Platypus Journey

4am... sleep eludes

2007-04-12T03:56:00.000-07:00

This is Spike...

Well, I thought I'd just post a little progress. And a great big whine... 4 am, and there is no sleep...

I'm down to 40/40/40 as of yesterday. I took a 5 day break from my 5 mg weaning schedule, which I really needed. Yesterday is the first day I felt like a human in a long time, but of course, at bedtime I hit a wall so hard I had to be helped to bed. Again.

So. I saw Dr. L yesterday, and he was pretty grim. The high levels of steroids are starting to cause damage. I am cotrtisol resistant, and the sinus infection is eating my brain again. Can't really wean until the infection is gone, infection is getting worse, and I have to beat the ENT about the head and shoulders to make her understand the grave and serious nature of this. But I have to contine to peck awy at this until it's down. One of the dangers is that I'll need to stress dose, which will throw my completely off again. And this last weekend I sooo wanted to stress dose. I can feel my body screaming at my kidneys to try to force them to force the missing adreanals to do something... phantom limb pain...

I see the ENT tomorrow. Not sure what's gonna happen, but Dr. L said I have to push. I hate to push. But I also hate to end this jouney because of a stupid sinus infection. Not how I want to die, by the way... But new pockets of puss are forming, need sinus surgery to debreed my sinuses, need IV anti-biotics since I've been on oral antibiotics for so long that I'm in danger of destroying my stomach... Even taking the extra yogurt and live active acidopholis and lacto-bacilli... I don't want the explosive bloody diareah... I've already got 2/3 of that as it is....

Weaning is hard!

2007-04-08T18:54:00.000-07:00

"meaning of life" done with marker and watercolor. The rose is iridescent, which doesn't show up here.
Some people say everything gets written down in the Big Leger, while other people say that life is a series of lessons, and we are both the teacher and the student. As we go from life to life, we have different lessons to learn and teach, and this is meant to represent that.

I've believed in reincarnation since I was seven. Worked it out on my own, since my parents were atheists, but they sent me to an Evangelical private school, Alma Heights Christian Academy.

Yup, they had their hands full with me...

My wean is going very hard. I think in part because the sinus infection from hell is back. I have to call the ENT tomorrow first thing and find out when I'm scheduled for sinus surgery. Not that I want surgery mind you, but my cheek is so swollen that it's affecting my vision, and yippy, I have "new pockets of puss" forming. At this point, I think it is appropriate to say several bad words, really loudly. Repeatedly.

I'm now down to 45/40/40 and I have myself scheduled to wean again tomorrow morning. Today was the first day I felt half way decent in a week, so I think I'll put off weaning until Tuesday, and give myself one more halfway decent day. I've been sucking down so many zofran, I wonder if I was masking a little AI in the proess. 'Cause without it, I'd have been barfing for sure.

Spring Cleaning

2007-04-02T09:10:00.000-07:00

Since today's post is about Spring Cleaning, I figured it would be fun to show you some pictures of my massive reclamation project to reclaim some personal space in my house. And I thought I would share my work-space with you.

The first pix is my current work space. The other two room shots show my progress at about the 80% point.

And the 4th picture, the painting, is a called "The Studio."

I don't know about spring cleaning.... Never really understood that concept, but I was raised by wolves.

What I've been doing lately is clearing out, cleaning out, getting rid of things I have no use for anymore. And it is Spring.... So I guess, this is the first spring cleaning of my life.

So far this year I've completely reclaimed an entire room from being a soul eating pit of clutter. It was so overwhelmingly cluttered that we would open the door, shudder then quickly close the door. No way to even know where to start. But that room is now my studio/craft room. I just decided that the far corner would be the perfect place to put my work table.

I literally carved a path to the back corner, stacked stuff on other stuff, hauled a work table up from the basement *(at 4 am no less!) and just went one piece at a time until the room is mostly done. I did NOT do this as a marathon cleaning/organization session. Instead I did this in chunks of 10 to 15 minutes at a time. Sometimes I went longer, but mostly it was little tiny sessions that got it done.

I had wanted to paint the room before I put it together, but that was not going to happen, not this year anyway. And I wanted a place where i could be, that was just me.

It's funny. When I started cleaning and organizing that room, I was not paralyzed by the clutter. I was not owned by it, It had no power over me. It still has no power over me. And that amazes me. It's only been since my BLA that I've felt this freedom, and I'm not sure where it comes from. I haven't had a High since the BLA, and I'd had plenty of Lows before, so I don't think it's connected to that sort of cycle.

The next/current project is laundry. I think I have about 8 loads that need to be folded, and there are probably 5 or 6 more loads that need to be washed. Think I need to go through and weed out some fabrics????

I still have so many boxes to go through though. Condense and condense and condense.

gone to long...

2007-03-20T23:49:00.000-07:00

Okay, this isn't what you think it is. I had so much fun drawing this. Sure, it is a study in anatomy, and I guess it is a nude... but it's my nude left index finger!

Graphite

Okay lots of stuff going on with me.... here's from the last seven days...

3/17/07

Four people sharing one bathroom, where everyone has to use a hat isn’t nearly as much fun as it sounds….

So, Monica got here on Sunday and we had a great time until Tuesday night. Not that Tuesday night was bad, I didn’t go to bed. I was having on of my rare wired nights where I didn’t want to go to bed, couldn’t really make myself go to bed. Played WoW for most of the night, and had a good time with that. Got all my characters to a good place, and took care of a lot of game bookkeeping. And then I decided I ought to go to bed, around 5 am… I know, bad, bad Crystal.

5:00 am I lie down and discover that it is impossible to breathe. Not really surprising since I was so swollen from edema. That night I weight 270 pounds, and looked right freakish with my edema and my lopsided face. My right cheek is so swollen it is comical. So, since I can’t breathe lying down in bed, I decide that maybe I’ll try to sleep on my chase lounge. Not gonna happen because I start having chest pains worse than the ones I’ve been having. Yeah, yeah, yeah, I know, I should have had those chest pains checked out, but they always got better…. But this time they felt different. Pain radiated to my left arm and jaw and back… I felt like I was being crushed and stabbed at the same time.

I thought I was having a heart attack.

I woke Mike up, Monica wandered out of the craft room, and forced me to take a stress dose and a pain pill… After they called the health line, it was pretty clear that I needed to go to the ER. Instead of heading to Swedish, we went to Overlake, since we thought it was a cardiac thing… well, I probably just need to go to Swedish and stop screwing around.

The good news is that it was not a heart attack. The bad news is that my potassium was dangerously low. To give you an idea of how low it was, 3.5 is considered low. My potassium was 2.4, which is really, really bad. Like, they admitted me to the cardiac care unit and kept me there for three days bad. They let me go this morning, Saturday.

I guess my symptoms of low potassium have to fall under the weakness, fatigue, and muscle cramps. Of course the only cramps I got were in my chest… oh joy for me. The craziest part though, is that Tuesday was a Great Day! I dragged Monica out to lunch (not the best sushi place though) shopping to the local art store, and Starbucks and the bookstore, and generally wore her out… That, and I had a really wired night, probably not a fatigue filled night by any stress…

But here are some of the standard symptoms you should watch. Of course, part of the problem here is that these could easily be mistaken for a Low phase or cycle, at lease for me. I think for me, the biggest one to watch for will be the chest pain. (ya think???)

These are some of the symptoms of low potassium, or hypokalemia http://www.mayoclinic.com/health/low-potassium/AN01143

Signs and symptoms of low potassium may include:

Weakness
Fatigue
Muscle cramps
Constipation
Abnormal heart rhythms (arrhythmias)

Treatment is directed at the underlying cause of the low potassium and may include potassium supplements. A very low potassium level is life-threatening.

They had me on the telemetry boxes to monitor my heart functions, so those are gonna be ugly when I look at the places where the patches were stuck to my tender skin.

The cardiologist was astounded that no one has addressed the edema I’ve been having. I went from 270 to 254 pounds in three days. 16 pounds lost! I feel much better getting the fluid off, ever so much better. They had me on three different diuretics to get it off too. One was lacix, which is spelled so far off spell check will never find it…. But the problem with that one is that it gets rid of potassium, so they added two that are potassium sparing diuretics.

They had me on pills and powders and IVs trying to get my potassium up where it should be. They did treat me with magnesium, amiloride, a potassium-sparing diuretic, and spironolactone, in addition to the other horse pills. They didn’t do anything to try to figure out why my potassium was so dangerously low. Nothing at all, they were just concerned with trying to get it back to where it should be. I’m so glad that I’ve got an appointment with Dr. L this week, but I don’t know what the cardiologist said to Dr. L, but I do know that he was in contact with him.

So, we still don’t know the why I was so low. It might be the sinus infection. It might be the large dose of hydro I’m on. It could even be that I’m weird and that it’s a genetic thing since my mom and sister both have had to have IV potassium therapy. Great….

Speaking of my mom… my hospital roommate was like sharing a hospital room with my mother… anyone’s idea of a nightmare. Although where this woman was astoundingly passive aggressive, my mother doesn’t have a passive bone in her body… The first day she practically demanded a catheter, and then when they gave her one because she couldn’t manage working out how to pee in a hat, she was pissed off… so to speak anyway.

I guess part of my frustration with her was that she was lying to her doctors. She would tell them one thing, and then call her family and tell them the opposite thing. I guess because we fight so hard to be taken seriously, that we fight to be believed, and here is this woman who has decided that she doesn’t have to tell the truth about her drinking or her peeing habits…

I swear that if I have to be admitted to the hospital again for any reason, I need a central line. Oh dear gawd, as yucky as they are, that’s the only thing that’s gonna save me. I had three IV lines placed in two days. The phlebotomists had to stick me and stick me and stick me to get blood. Only one person was able to draw and get it on the first go. Unacceptable for me and my poor veins. Especially when they decided to dig to try to get the vein.

Not how I’d imagined I’d spend this week… not by a long shot.

I had this great week planned, but like all plans they don’t go the quite the way I had expected. I thought I’d be able to scam all sorts of free music lessons from Monica for my new electric guitar, and we’d be doing arts and crafts and watching cheesy movies and making ice cream and looking at paint swatches for her house and generally having a great week. That was the plan, but it wasn’t quite what happened.

This was the week I was originally scheduled to be in hospital for the four to ten day work up with the EEG and the seizures I may or may not have been having. Talking with Dr. L, he said that this was probably not the best time to do this, since I’m supposed to be doing a wean, and that because I’m still dealing with this sinus infection, not a good time to do a protracted study like this. That, and because Monica was coming for a visit, I called that clinic and told them I would reschedule, and probably call in April. April seems like a good time, since I should be able to wean to a reasonable dose.

Should, and well, April looks like it’s going to be May or June, depending on when Ami comes to visit.

Since the BLA, I am OFF that damned and cursed Cushing's roller coaster. Yes, I still have days where I'm high and Low. Mostly Low, but that's because of the infection. But. BUT I am convinced that we are supposed to have highs and lows. Everything in our natural world has a cycle, from blinking to the days to the tides to the moon to seasons to sun spots. Everything as a sine wave... up and down and up and down.

But I'm not being WHAMMED up and down slammed against the floor and the ceiling every few days. I'm not being crushed by G-forces pounding me into a pulpy mass of pain and grief and the desire for death to give me release from the torture that my life had become.

I still have issues that are unresolved... I don't know if they were caused by the Cushing's or if they are something else. My special brand of Cushing's seems to be complicated by not only having had it for probably my whole life, but it turns out I have a "special brain structure" where my brain seems to just "shut off." Oh joy for me.

But even with the difficult recovery that I've had, my life is so much better since the BLA. I have hope again.

3/20/07

Right,

I had my pit surgery Nov '06 , and got rid of an unwanted goo tumor.

I had my BLA surgery Dec '06 (almost exactly a month later) and got rid of malfunctioning adrenal glands.

Now I seem to be going through my possessions and getting rid of things I no longer need or want. Just getting rid of things without emotion or attachment in many cases. Oh sure, I'm not getting rid of many things, but I reclaimed an entire junk room and made it a usable space--my craft room/studio space. I just spent two hours cleaning the top of my dresser. Yes, two hours to dig through everything, and there were only a few things I didn't know what to do with.

In the past, my clutter has paralyzed me. Never sure what to do with lots of the stuff I've been dragging around. Oh sure, I've read all about the psychology of clutter, how it can hold us hostage to our stuff. But this letting go, it's something dramatic for me. Of course, y'all know I'm a drama queen.. but still. But I don't feel paralyzed by it, sure it takes me a long time to get anything done, but I'm doing it.

This is something I have never, ever done before. You have to understand, I come from a long line of pack rats, professional pack rats in fact. My grandpa had the largest Junk Yard in Western Washington... a real junk yard with real junk, not a dead car lot... My mother has a barn full of her junk, junk from past renters, my sister's house is packed to the rafters... as is their cargo container.. Yes, that's right, they have a shipping container in their yard. Of course, my own closets are jam backed with boxes and bins I haven’t gone through in ages, in some cases 8 YEARS! Ohhh, maybe I’ll find my green suede bomber jacket!

So, this getting rid of things, clearing out, unpacking and de-cluttering is so very odd and a little confusing. Have other people gone through such a dramatic change? I don't know if this counts as a personality change, or what it is.

Are other people getting rid of things easier? Letting go of the past?

Sea Stacks

2007-03-09T15:16:00.000-08:00

This is part of a series of seascapes that I did based on some pictures of the Sea Stacks out at the Olympic National Forest.

I did three different versions, one watercolor pencil, one in the Graphitint pencil, and one in color pencil. I'm wondering if I should do one in just graphite, hmmm, that would be interesting, shades of grey...

This watercolor pencil and this version is the one that has not been washed. I have since washed it, so it looks different now. I just have to scan it.

I did something great and crazy this week. I bought myself an electric guitar. Do I know how to play the electric guitar? NO! Do I know how to play the acoustical guitar? NO! Am I gonna learn? You bet I am! I figure that since I've got nothing much else to do, this is one of those perfect opportunities to do some personal enrichment things. I really love surf guitar music, along with so many other types, anyway, I'm going to teach myself to play the electric guitar with a little help from some friends!

I've started using my Piliates Ball for more than just a chair, I'm actually feeling good enough to do some simple excersizes with the silly thing. Love my Ball, and yes, at 260 pounds it is just fine with my weight.

Well, still have that cursed sinus infection. I'm now on a 3 week course of a new antibiotc. My new ENT is pretty funny, but her office is still not quite set up, since she has physically moved her practice. The last appointment there was no excavation needed, which is a good thing.

The pan from the Prismacolor Grey incident/burning down the kitchen is a total loss... I thought I'd be able to save it, but no If you gently boil a pot with automatic dishwasher detergent, you can usually save the pot. It might take a couple of applications, but it does work. VQ's helpful household tip of the day (Thanks Eloise!)

I'm still not driving, still feel like a prisoner some days. Ok, most days I feel like a prisoner....

Mixle, sad little Mixle

2007-03-05T09:13:00.000-08:00

Here he is, sad little Mixle. I had a lot of fun with this little guy, and he actually started out as a fish. Now sure at what point he turned in to this, but this is what he wanted, so this is what he got.

I used the new Graphitint set that I received for my birthday, and I really like working with them. They have a dry feeling going down, not at all like the color pencils, but closer to the watercolor pencils, but dryer.

I've been working on a series of landscapes. The subject is the Sea Stacks out at the Olympic National Forest. Each rendering is in the different set of pencils, so one will be in color pencils, one in watercolor, one in Crayola, and the Graphitint. All are completed, except for the color pencil, and that one is coming along quite nicely. I'm astounded at the difference in time I take in the different pencil. I haven't washed either one of the water color pieces yet. So, I might end up doing a second in those pencils. We shall see what we see. But that's part of the joy and majic of this, not knowing how things are really going to turn out.

I tried to burn down the house again... I washed my big cast iron pan, and forgot it on the burner. It had the perfect season on it, but now that is a thing gone... But the good news is that pan isn't a total loss, like my 1 quart copper bottom pot is. I also think I need to move my smoke detector, just so I feel better. Both Mike and Spud told me that I'm not allowed to cook anything unless I stay within "the ring of fire." Good thing I have a big kitchen... And it will give me some time to work on the sculpture that I've been planning for a while. And the best part is that this will challenge me to incorporate the smoke detector in the sculpture.

So, let's see, I weaned again, so I'm now at 60/60/50, and hope to wean again on Friday.

Something interesting is that I'm cleaning out my life. I've been going through various boxes and bins and bags and drawers and everything like that and just clearing out the old, the stuff I don't need or want anymore. Coming from a world class pack-rat, descended from world class pack rats... this is actually significant. Not sure why, not sure why now. But it's what I'm doing.

In other news, Methboy went to our mom's latest doctor's appointment, where he proceeded to tell him that she was insane, tried to get her to admit that she was insane... He's convinced her that she needs to sell her rentals and move to Arizona with him. Or at least, he thinks he has. More like he wants to move to Az because he has no children in that state, so he figures that he can spend all her money there. Also, she's mummify pretty quickly in that dry heat, if it's anything like SE ID, so he can continue to collect her pension and SSI checks.

New Toys...

2007-02-26T21:30:00.000-08:00

This is a single holly hock done with the Prismacolors. I didn't really use a reference photo for this, other than looking at a few. I was quite surprised to discover that most holly hocks these days are doubles! They look like pom-poms... Anyway...

Oh! This week I got two new sets of pencils! One is the 12 pack of Derwent's Graphitint set, and the other is the 24 pack of Prismacolor 24 Watercolor color pencils. So far, I've just played a bit with the new Prismacolors seeing how they are similar and different with the Derwent watercolor pencils I have. Right now, not having actaully created a new painting with the watercolor pencils, and just playing around with them, so far I'm more impressed with the Prismacolors...

But I sure had a whole lot of fun this afternoon with the Graphitint pencils. I got out my Mark Kistler book out, and just let it spark my imagination. I created a funny little flying monster flying through the a woods. I'm really impressed with them, but they don't really work the way I thought. The Graphitints are a water soluble graphite, but they don't lay down the same as any other graphite I've used. I don't have lots of experience with graphite, but these feel ... different. And boy are they!

I'll post my funny little guy later so you can see him. Made me giggle.

The staph antibiotic really is working, but I need to get the results from the sinus culture to make sure this thing is gone all the way!

Boogers....

2007-02-21T10:22:00.000-08:00

This is my latest painting. The view is a little complicated, but this is the view from my bedroom window... looking at the outside of my house, into my kitchen windows, and seeing the neighbor's house.
Prismacolor pencils on stonehenge paper.
I'm working on a floral painting right now. I find it rather funny that I can work with my pencils but video games are still beyond where I can operate.

I haven't posted or updated my blog in so long! Stupid sinus infection, and stupid AI! That said, this is what happened yesterday, when I finally got into see the ENT for the sinus infection....

ok, the ENT appointment lasted for something like... 2.5 hours. But that include the extra 1/2 hour she kept me waiting. She's got a new practice and her assistant was out sick.

So, what did we do during that 2 hours? A little more waiting.... and ... other things.

Ok, first things, Shelly, the Prismacolor of *my* sinus infection is Cream mixed with Lime Peel and Brunt Ochre... A whole lot of Burnt Ocher and some Raw Umber just for kicks.

She said I’ve got a staph infection, but after she was done with me, I swear by all the gods I've got a STAFF infection... She looked up my nose with her special light, was quite impressed by the pain and facial swelling I have. I look like I've got a case of mutant mumps, or a mutant with the mumps, one of the two. Or maybe both, I don't know. Many days lately I'm having trouble working a sweat shirt.

So, she looks up my nose, and decides that she can't culture the thing 'cause "stuff is in the way." Stuff? STUFF??? So she shoots some numbing spray up my nose and has me wait. While we are waiting, she attempts to look at my various CT scans and discovers that she’s forgotten her password, and no one in the office has any way for her to get her password, since she’s managed to lock herself out of the system.

(This is why we need a really good integrated biometric verification system, but I’m too sick to really go into the why and obvious wherefores of this, and besides, you all know the obvious whys and wherefores of a good integrated biometric system. )

She takes me back to the dun-dun-dun “procedure room” and starts to pull crap outta my nose. And then it HURTS. So she sprays more spray, and pulls giant boogers out of my nose. And then it HURTS EVEN MORE. So, she stops, and packs my nose with gauze and string and more numbing stuff. So there we wait for the numbing stuff to take effect. The clock in the room was off by an hour, so we thought we waited even longer than we did.

Eventually she comes back and proceeds to remove the gauze and string and more boogers. And sucks goo out, and then pulls out MORE boogers! AND GOO! And even with the extra numbing stuff, it hurts! Finally, she gets to the point where she got to “the” booger she was after, and had to break it up before she could remove it!

Turns out it wasn't just a damn booger, it was a booger dam! Mike was quite impressed with the amount and size of boogers she pulled out of my head. And you know it’s bad when the doctor is impressed… She said she’d seen worse, but that she was quite impressed with the amount of matter.

After all that, she was finally able to culture my nose to find out what exactly is causing the infection. Besides the staph infection.

She gave me one of those rinse bottles, which I used tonight, but it didn’t have much effect. Still too much swelling from the afternoon’s nasal spelunking session. The swelling has gone down quite a bit from this afternoon, and the pain level is different. Not sure if it’s better, but it… different.

Oh, and the pharmacy didn't have any record of the antibiotic being phoned in, so I'm guessing that they called the wrong pharmacy. I'll have to call the other local place tomorrow to see if it just went to the wrong place.

I spent most of the evening really cranky. Not sure why. Probably the pain, probably partly just wanting to be done with this whole thing. Dr. L says I sound really good on the phone. Sure, maybe I do, but I explained that it’s really an hour-by-hour thing with me lately. Thursday cannot come soon enough.

But I can tell a difference already in the infection. Just tilting my head a few degrees doesn’t hurt, and doesn’t threaten to eat my face….

So, I spent Friday and Saturday in AI. 10 hours on Friday, and again most of Saturday too. I have no idea which day, but one day I spent at least 5 minutes dry heaving and bile barfing. They always want to know how many times I throw up. I don’t ever count, it’s always measured in time. One after another, barf after barf and then barfing some more. After that I just lie there, with my face in the bucket, sharp pain from the edge cutting into my forehead. The zofran doesn’t help any more, at least not for very long. They gave me generic the last time it was refilled, but it doesn’t work as well for me. I need to talk to the soon to be fired PCP about it.

Speaking of her, she called me yesterday, wanting to know why I wanted to get a refill of the antibiotic. You mean, the reason besides still feeling like crap and still having a sinus infection for MONTHS???? I would have thought that was a good enough reason….

The refill I’d asked for a full week previously. The day she told me that she wasn’t going to treat me for the infection any more. I really need to fire that doctor. Really, really need to fire her. She kept trying to say that I’d been on it for two weeks already, the avelox, but I’d kept having to remind her that I’d been on it for THREE weeks, not two weeks. She said, “oh, it’s a really strong antibiotic, it should have cleared it up after one week.” Doh!

Ayla's Owl

2007-02-10T18:13:00.000-08:00

This little birdie was done with color pencil on Rising stonehenge paper, and is 14X11 just to give you an idea of the size.

Something rather interesting happened to me while I was working on the tree bits... I suddenly got this huge burst of energy, and had to just walk away from the painting. It was really, really strange, sort of like the energy burst I experienced while working on the portrait of Dobby the cat. But instead of anger, as with Dobby, it was more just energy! Go! Go! Go! I ended up just bouncing for a while on my Pilates ball, which doubles as my work chair in my studio... Love that Pilates ball...

These are just my current favorite art tutorials on the web....

Dragon Art Tutorials

Dragons. Drawing, inking, dragons and other critters, Photoshop techniques... Did I mention Dragons????

The Bergsma Gallery
http://www.bergsma.com/bergsmanews.asp

She’s provided a whole lot of drawing and sketches that she’s done, that are ready for you to color. I mean, how F-A-B is this! This way you can work on your inking and coloring techniques and not have to worry about messing up something you’ve spent hours on… (ok, I admit that’s MY fear…) While technically not a tutorial, more and excuse to color and work on color techniques... :)

FARP

Fantasy Art Recourse Project

Just a whole lot of useful tutorials from drawing to inking to digital media

Drapery tutorial looks at the way fabric folds and layers, every interesting

Return on the sinus infection

2007-02-09T18:44:00.000-08:00

Ahhhh! Will this cursed sinus infection NEVER leave??? it's like a crappy party guest that just forgets to go home. Except there was no party, and they were not invited!

I'm back to sleeping more and more and the evenings/afternoons are getting slower and slower, not fun at all!!!

Okay, this one is actually the original, larger work that I pulled the first tulip from. I posted the single tulip a couple of posts ago.

Last night I was feeling really tired, but still wanted to do something creative, so I down loaded some really fun drawings from the Bergsma Gallery. She's got some great things to color, and I thought it would be fun to just work on my coloring techniques. Plenty of fun there to be had. Anyway, I bought a set of basic Derwent watercolor pencils for another project, and decided that I was going to use those instead of the wax pencils. Wow! Now I'm gonna have to get a bigger set of watercolor pencils... heh. I think I've decided on Aqua Monolith Pencils, in the 24 set. The are the woodless ones, and I figure that will be the best value.

I've been looking at and working with a few art books and learning some more techniques, and one of those books devotes a full half to the water color techniques. I've only done one of the examples, but the results are wow!

Meditation

2007-02-08T05:53:00.000-08:00

I call this one "Meditation," and it was inspired by the Weekly Cartooning Challenger at Action Cartooning With Ben Caldwell. The challenge was to give flight to the poor flightless Penguin. There are so many very clever and talented artists over there, and well, I just couldn't resist the challenge myself.

I don't know if this is funny, but I really liked the juxtaposition between the two penguins.

Most of this was done using my PITT pens, but the background for the Astral Penguin is obviously my color pencils.

Heh, I wonder if Judy will accept this as my Animal assignment. Doh! I guess not, since it isn't very "realistic." Good thing the Owl for Ayla is finished. I need to photograph that so I can post it.

I'm at the point where I need to figure out how to save my loose finished pieces that I've done on this one paper I've been using. I guess I'll just have to work on of the books from now on, just for continuity sake. I know I was going to do that, but I find working on my drawing board in the living room just so handy. And comfortable, and bright light from my glorious picture window...

Looking at this piece, I can see that I would like to add some more elements to the meditater portion, maybe some butterflies or something. It's definitely missing something. I'm really looking forward to getting some constructive criticisms from that forum.

I have always wanted to draw cartoons, but of course because I thought you had to have the "drawing gene" or talent or inate ability, there was no way I could ever draw, I thought I was doomed. (Oooh, what an ugly sentence!) Last year I picked up Ben Caldwell's Action! Cartooning, but I haven't really done much with it yet. Other than read it, and re-read it, and then read it some more. I've checked out his sequel Fantasy Cartooning a few times from my local library too, but I've actually worked out of that a bit.

I think I'm intimidated by the human form. Yeah, that's it. I'm intimidated by it. And currently my faces are not even close to what I'd like. That's pretty obvious from my self portrait...

On to other stuff...
I finished the anti-biotic earlier this week for my sinus infection. Not cured, still have it. Need to call and make an appointment for more and deadly anti-biotics. I don't know though, I was on them for over a month, and still I have this cursed infection. A couple of weeks ago they said no to the IV anti-biotic, even though Dr. L and Dr. N said yes... Stupid ER docs... I don't CARE what the CT scan said, the infection is NOT GETTING BETTER. or at least, not GOING AWAY.

I cannot afford to let this get away from me again. I know I cannot face another week like that week from Hell. I just don't know that I can do that.

Signs of Hope

2007-02-04T07:58:00.000-08:00

I drew this early this week, it's actually half of a two tulip composition that I'll probably post later. It's colored pencil, but I used a blending pencil on the flower and the stem, leaving the leaves unblended. I really like the effect. I think, all in all for my first attempt at a tulip since I've been learning to draw, it's not bad.

I have been working with a couple of different books for color pencil technique, and they really are wildly different in their approach. One really advocates layer after layer, while anther wants you to go with as few as possible. The third book is a combination wax/oil color pencil and water color pencil. That one has been hard to wrap my mind around, but well... She really pushes using solvents to blend and break the surface of the pencil. I haven't done really anything beyond using the blending pencil, but I'm going to buy a blender marker the next trip I get to make.

I'm still feeling like my brain has been eaten by Cushing's.... that or the Addison's... or the AI... or well... the point is, I'm trying. Trying to learn new things is important. My son has me so pegged it's funny. He knows that my Sims Aspiration is Knowledge, no denial of that!

I read an interesting article Friday about people who have had brain trauma who suddenly have these bursts of creativity or who become actual artists. Neuros are only now starting to look at these people, and they are not sure if it is because of damage to the frontal lobe where our control lies, or somewhere else. I can see it with a little damage to the controller, that makes sense to me. If we hold ourselves ridged, then we are not open to trying different things... no brainer?

So, I actually went a full week without a full blown AI or Crisis. This is big, big exciting for me. I know that I'd given up the previous week. Being thrown repeatedly off that cliff onto the the chasm, with no hope of it stopping... it was more than I could handle, more than anyone should have to handle. But not only did I NOT go into AI, I also didn't need a stress dose 3 of the days! Hurray!

I still have the stupid sinus infection, and I need to call in a refill, but it's Sunday, and I will have to do that tomorrow. Or go in if I have to... Stupid infections...

Immitation of life

2007-01-31T11:59:00.000-08:00

This is my first attempt at a self-portrait, it was one of the assignments for my art class. It's not the one I had wanted to do, I still want to figure out how to manage the piece I have in my head--it's a double exposure, if you can do that in a drawing... one of the fat Cushing's me ghosted over the real me, the vibrant me that I know has to be there somewhere.

I was amazed at the other student's self-portraits, since that was a reoccurring theme in most of them, either being trapping inside or breaking out of their bodies and heads. I suppose it is something to think about further.

I used my avatar photo for this self-portrait. It was taken minutes after we took the stage for the ISU dance recital last winter. I reduced the picture to an outline, and transfered that to a piece of sketch paper, where I used the Prismacolor pencils to do the drawing.

I really miss belly dancing, but for now, it is so far from what I can manage. So, this picture represents something of joy for me. Bitter sweet joy, but joy nonetheless.

The last three weeks have been very hard. Especially these last two. This sinus infection has kicked my ass, and last week was probably the worst week. I had a crisis every single day, with one exception. Three trips to the ER, once in the aide car, one doctor wanted to admit me, but for some reason the ER doc said no, I guess a BP of 152/102 is nothing to get excited about... My labs keep coming back "normal" or "slightly elevated" what ever the hell that means.

Considering that my MRI readings all came back "pituitary looks normal" when in fact it it was crushed by a previous tumor...

I'm just not sure how many more days I can endure this imitation of my life. There is no escape from this. There is only "will I crash today?" and if so, how hard it is going to be? How bad is the pain, will I stop breathing again? How many hours am I going to spend retching and twitching and dry heaving, the zofran being only mildly effective. It's so hard to think that this is never going to end, because I feel like it never will. It will just go on and on and on, this misery.

Part of me is ready to just call it quits. Just refuse to take my medication, since it feels like it is only prolonging the inevitable. If I stop taking the medication, perhaps it will be like pulling off a strip of tape from my arm, ripping all the hair and part of the skin, leaving a rash, quick, but painful. Or will it be more like slowly peeling it away, one hair ripping out at a time...

I went in for another full MRI/MRI-V and MRI-A on Monday. The new neuro is concerned about the noise, she said something to the effect that normal people don't have noise in their heads. Ya' think? The noise had gone away mostly, after my adventure in November, but it's back full force, all day, every day. I think it is connected to the what I have currently going on, but only because it returned about the same time that I started this slide.

I want my life back. I want to have some sense of normalcy, some sense of hope something, anything to keep me going. But for now, I feel like I'm on a death's march.

2007-01-19T14:15:00.000-08:00

I finished this today, and I'm really happy with it for the most part. It is based on a photo from the Hummingbird's Society's picture gallery, just this really great picture of this royally pissed off hummingbird. I love his attitude, and I figure I'll be working with him more as I figure out his character.

This is the first time I've attempted to draw a bird, feathers, wings or attitude.

This was done with my F-A-B new Prismacolor color pencils, with a black water color wash over the background. This technique was recommended to me by my new art Mentor, Judy in Pgh, but I cannot for the life of me remember the name of the technique... I'll update once I get the name of it though. Crazy Italian word, that I can't even pronounce... At least i think it's Italian.

I'm battling a really bad sinus & ear infection, which has thrown me into a really deep Low. I almost feel as bad as I did while taking the dope-o-max, but the anti-biotics are starting to kick in, so I should be feeling better here directly.

2007-01-11T14:48:00.000-08:00

This little kitty was part of a tutorial from "Realistic Pet Portraits in Color Pencil" by Anne deMille Flood. I used Crayola colored pencils, not the really nice ones she recommends. But I'm really happy with how it turned out.

So, for Christmas I got a set of Prismacolor pencils, but it's obvious that I need to get some that are not in the set of 48 that I got. It's okay, I can handle getting new art supplies!

In addition to getting the pencils, I also got a set of color pens, Faber-Castel Pitt brush pens. I am still trying to figure out how to best use them.

I'm really excited to get these new toys!

2007-01-08T09:08:00.000-08:00

Here are my two latests dragons. I'm still figuring out the color pencils, but the scanner work still isn't quite right. The red one is much better blended in RL, but maybe I need to take photos instead of scanning... Dunno, I'll have to experiment I guess...

Pet Portraits!

2007-01-07T15:56:00.000-08:00

I can hardly believe that I haven't updated my blog in a month!

But I've been busy, and we lost power for a week, and I have all sorts of excuses!

Anyway, enough whining on my part...

I checked out a book from my local library, called "realistic pet portraits in color pencil" by Anne deMille Flood, so I can learn to do color pencil work. I have this idea for a painting in my head that is trying to get out, but I have to be able to create not terrible cats. The idea is a clown cat, but I'm still working on it. Funny, haiku are so much easier to get out of my head, buy I think the clown cat is going to be more like the rubber duckies that haunted me...

The first cat is Spike, and the second one is Dobby. These cats belong with friends of mine, Monica and Ami. You can't really say a cat belongs to someone, being cats and all... At least, not with most cats... Anyway, I've also been working on dragon heads. So far, I'm pretty happy. I'm using J "NeonDragon" Peffer website and her excellent book, Dragonart

I have two more dragon heads that haven't yet been scanned in. Okay, one is only finished, but the other one is close, mere hours from being done. I'm using the lessons I've been learning from the portrait book on the dragons. I do know that my poor Crayola brand color pencils are just not up to the task, and I'm going to invest in some real artist pencils. Good thing I got a gift certificate for Christmas! (Unless I decide to go with colored ink pens, instead of the pencils... So many choices! So little backbone!)

2006-12-08T11:25:00.000-08:00

Cyclical Cushing's

I think to explain what Cyclical is, we need to first talk about endocrine tumors in general. Unlike many other tumors, they produce hormones and affect the body that way. They also turn on and off, which is unique to endocrine tumors. Now, it just depends on how long a switch it is. Some folks turn on and off like a toggle switch, like a light switch. For other people it's like a riostat, a dimmer switch where you can slowly dial up the lights.

I think that even folks with florid Cushing's have cycles to, just not very dramatic. These people will and do consistently have high test results, with no normal or low readings. The difficulty lies when you have a tumor that shuts off and on, with patterns that are difficult to see at first. This is why journaling is VITAL, so that the pattern can be visualized. Folks with Cyclical Cushing's can have very dramatic swings in their physiology, which of course, gets captured in the test results.

And that is the problem. There are many, many doctors that do not "believe" in Cyclical. If you have one normal or low result, they will only focus on that normal or low, claim the other High results are a fluke or find someway to write it off.

Technically it is impossible to have both Cushing's and Addison’s, because these diseases are polar opposites. Cushing's of course is too much cortisol, and Addison's is too little. Many doctors who don't understand the nature of endocrine tumors refuse to see the obvious. I've had the argument with several doctors and nurses who insist that it isn't possible to have both because they insist tumors don't shut off and on. They keep telling me that it is a gradual process, not something that flips.

And they are idiots because they will not see what is standing before them.

Those of us who fall into this category have a very difficult time getting both diagnosis and treatment. There are a few of us here on the board who are documented to have both Cushing's and Addison’s, I'm one such platypus.

2006-12-03T12:34:00.000-08:00

Wheee! It is good being on a High, but not too High.

Yesterday was my husband's company Holiday Dinner and party. It's the first one I've been to in three years. Because of the schedule at ISU, there was no way for me to get there and back in time during Finals week. I needed to be reviewing my course work, not driving 14 hour each way. Ah, sweet break from school!

No one puts on a party like my husband's company, hands down. A few years ago he was in a different group and they rented the EMP in Seattle, and the "pick-up" band that played Had about a dozen members... from groups like Yes, Styx, Pink Floyd... The lead singer was Edgar Winters. The lead guitar player was Jeff Beck... some pick-up band, eh?

And the dresses! oh the dresses! Everything from the finest saris to bead encrusted gowns to cute little cocktail dresses and beyond. I wore my black knit sheath dress with my cream beaded and pearled knee lenth coat. I know I didn't technically need any more jewlery, but I decided to wear my huge amethyst pendant, which added the spot of color I needed. I sure need girl shoes... I ended up wearing my back cowboy boots. And this are not dress boots :blink: but they are new and they are black, and smart looking too.

My hair was wonderfully co-operative, and my curls were perfect. I had wanted to make an appointment to have an up-do, but as usual I procrastinated and didn't get that appointment made.

The parking garage locked it's doors at Midnight, so we had to walk down one floor to the elevators. Part of the problem with cowboy boots is that they are not made for walkin', they are made for ridin'. We'd parked down on the 4th floor, so it was a good think that the elevators doors were open inside the garage. I insisted that we go back up to let other people in. Mike just looked inside the door way, and didn't see anyone, but I went outside and called everyone to the door.

I checked out one of Lee J. Ames' Draw 50 Cats books from the Library. He's got a whole collection of Draw 50 (fill in the blank), and I really like the series. I know when I've done a good job... I show Mike the cat, and if he gets sad, then I know I did well. I'm allergic to cats, and he loves them... He doesn't want to get an outside cat, and he doesn't want to do the work necessary for an inside cat. The reason I'm learning to draw cats is that I want to do a cat painting for my sister-in-law. A cat clown. She loves cats and she loves clowns. I thought to combine her love of the two into a cat clown. No clown holding a cat from me! At least not the painting I have in mind specifically. I just need to scan what I've done now and post it to my blog.

Still fighting the good fight

today's pic this is one of my "beverton" fish that I started drawing my last trip to OHSU. I used this as a modle for the last painting I did. I need to as my sister to take a picture of it, since I forgot to before I handed it over to her.

2006-11-27T08:48:00.000-08:00

Social butterfly

I've been remiss in posting the last week, but I hit one of my deep lows, spent some time at "The Farm" with my family, and had a wonderful time with a house guest. I felt really bad for my friend though, she got here just in time for me to crash, but she's a Cushie too, so she understood.

I've been spending some quality time with both my sketch book, and WoW, I am planning to paint a clown picture for my sister-in-law-in-law (she's a lawyer), and she really likes clowns. The one that I'm working out is a cat clown, I am planning it as a portrait, but I'm still working on the background and the media. The background will likely be a watercolor wash, since I like that effect. I just need to decide if I'm going to have smaller cats in the picture as well.

I forgot to get a pix of the fish painting I did for my niece Becky. It was a birthday gift, and I hope she likes it. I used all "her" colors, so if nothing else, she can use it as a background piece. I did scan in the dragon cave pix I did for her sister Jen. I believe I posted a copy of that already.

Links from friends that vastly amuse me: this is to the Llama song, from Amiamiami, and this is to the Badger Badger Badger song, from my friend Kevin. This one is truly twisted Headcrabs... it's made from the Half-Life 2 engine, so if you've never seen the game it probably won't make much sense to you. I woke up with this as an earworm, so be careful...

This is one of my asteroids, graphite pencil of course, in many different hardnesses.

2006-11-20T00:25:00.000-08:00

I'm super special... only about 1/4 of a pituitary

I have been trying to process this news. I found out a couple of weeks ago, and I really think this is the reason the tumor board has been so wiggly with me.

Dr. L is still working like a madman trying to get me help. I think I've discovered why I'm having sugh a difficult time moving forward. I've had plenty of high and normal and low values in my tests, and those normal and low tests are probably what's making the board all wiggly.

But the other news that I think I know is holding up the board back from approving me for pit surgery. It seems that I only have about 1/4 of my pit left. Left after what you ask? It looks like I had a very large tumor at one time that crushed my pit. This large tumor apparently died after it outgrew it's blood source, and has been re-absorbed. I do not have a visible tumor now. We think that the remaining tiny little tumor has taken over and is very powerful, given the wide and hard swings I have with my cycle.

I don't know what my future holds right now. I just don't know. It is likely that if I ever do get to surgery, that I'll have to ultimately have a BLA.

I don't know how many people have had a tumor that died, taking most of their pit with it, only to have another tumor show up wreaking more havoc.

So much for "Asymmetrical Pituitary..." it more like a crescent moon with a little blob at both ends...

I crashed hard on Wednesday, here it is Sunday night, and I'm still crashing. Crashing and crashing and crashing and crashing. It's like my starter motor is going bad or perhaps it's my alternator ....

We spent the afternoon with my family, I hadn't realized that it's been since July since I've been up to Whidbey. Too long, but when you crash every five days, not a whole hell of a lot I can do. i just have to hold out that I'll be cured soon. I have to hold that thought close.

Back on-line--Huzzah!

2006-11-16T01:27:00.000-08:00

Hip-hip-HUZZAH! I'm back on line. We lost all connectivity at home for five days, there was some weird problem but now it's fixed. Oh sure, I had to call our ISP several times a day to get it resolved, but we are all good now.

I've got a friend visiting me for a few days, and I crashed hard today, so I've been asleep since 10:30 am, and here it is 1:30 am. Well, I did get up several times to drink water and to have dinner, and to visit with my friend for a while. But I've been asleep for most of the day. I'll be heading back to bed after I finish that last water bottle. Gotta stay hydrated.

I'm at almost 20,000 words for my NaNoWriMo novel, Shades of Grey, so I'm a bit behind schedule. All in all, it is coming along really well, but I've slacked off since Monday... I know, excuses, excuses, but I hope to write tomorrow. Okay, it's technically tomorrow right now, but you know what I mean.

Today's picture is based on one I took at Snoqualmie Falls. Because we have out of state visitors, I think we will have to take them there, if we can. But let's just face it, I want to go because it is beautiful and with the recent flooding, it should be amazing!

2006-11-05T17:15:00.000-08:00

NaNoWriMo day 5

I'm at around 6,400 words, that's just a SWAG on my part. The last couple of days have been rough going, since my pit tumor shut off and I'm in a cortisol Low.

It really is going to be every bit as challenging as I thought it would be. It is almost 5 pm and I've been awake for ... less than 4 hours today.

The funny part so far is that when I'm really low like this I seem to concentrate on the story from the Alien invader's point of view. I noticed this a couple of weeks ago when I was in another Low and working on my character sheets. The aliens were just more... real to me. Too funny!

I just ate a bunch of salt, so I should stop itching soon. What a crazy disease I have!

The rain's back here in Seattle too. I’ve heard the month of November described as the NO month… no sun, no leaves, no fun. Dunno about that, but the rain has been amazing. We don’t normally get such heavy rain, and certainly not for long periods of time. The onther night my feet were burning hot, as opposed to the freezing cold when I’m in a Low, and I had to go stand out in the rain. I had to go stand in the wet grass for about ten minutes. I was astounded at how squishy the ground was, but it sure felt good standing on that cold wet grass. My husband couldn’t’ figure out why I was outside in my pajamas, but he doesn’t worry about my weird things, unless I’m really Low.

I’m so very lucky to have my husband and son. I know that there are lots of Cushies out there who are married to jerks, jerks who cannot or will not understand this awful disease. My heart breaks when other Cushies tell me what they have to put up with at home. I would like to just invite them all to live with me, but I know that isn’t realistic.

I'm off the Dope-o-max completely now! Hurray! That drug was the worst thing ever... It made my cycle a 5 day crash-to-crash, so I couldn't get a decent High... But now that I'm in a Low, my tumor keeps shutting off and off, sort of like I've got a bad starter or something. Or maybe it's my solenoid... car analogies...

As you know, I'm doing NaNoWriMo this year. I'm just not having much luck getting any kind of word count when I'm Low. So, I'm going need to figure out a strategy for that. The funny thing is that when I'm low I've been thinking about my antagonist’s point of view (invading squirrels from outer space), and because this is a sci-fi novel, at least nominally, this might work out well. Especially since I didn't have time to plot out the book from their point of view.

2006-11-03T10:14:00.000-08:00

Crash day....

These are so hard. Anyway, the tumor Pitunia shut down sometime last night, so I am just draggin' my b-u-t-t this morning.

Shades of Grey is coming along, I've maintained my pace of 2,000 words a day. It's been two whole days into NaNoWrimMo, so I suppose it's not time to call in the dancing girls just yet.

I had thought I would just post the Novel as I went along, but that just isn't realistic, especially since I have a tendency to edit while I'm writing. I don't know if I can break this habit, I don't even know if I want to break it. I'm not sure if I need to create a separate blog dedicated to the novel or what. I'll figure something out in the next day or two though.

While I was in student housing at Idaho State University, my little two room apartment had these wonderful huge floor to celling picture windows. Unfortunately, as you can see from this picture, looking out my bedroom window, that mean zero privacy. The curtains were left over from when the rooms were motel rooms, so they were those wonderful heavy blackout insulated ones. Perfect for keeping out winter chill or possibly even radiation blast from a nuke, but that meant no sun light when they were drawn. I'm one of those people who likes to wake up with light. I had to come up with a way to keep the curtian open a little bit, so I could get some daylight, but try to maintain some privacy.

I'd seen a segment on the Christopher Lowell show (miss you Chris!) where they had painted a window for privacy, but they didn't go the same artistic way I did. I think they painted it to look like a screen, but I don't remember. On a different craft show I seen them painting glass fixtures, so I decided to paint the window.

I used acrylic paints, mostly just the 99 cent little pots of paint from the craft store, so the materials were not expensive. They would also wash off when it was time to move, with little hassle. I painted the branched first, then added the leaves and the flowers. Then I outlined it in black. I needed to keep an eye for how it would look from the outside too, so some times I would line in black, paint the leaf or blossom, then re-line in black so it looked good from both sides. I needed to let it dry between coats, which in SE ID, is not a problem. After painting the details, I thinned out white acrylic to almost a watercolor wash to paint the background white.

To give you an idea of the scale, the finished painting was 3'x4'. I chose this view of the painting because it gives the best view of what I was trying to block out ... my glorious view of the complex parking lot, and the utility room.

Shades of Grey

2006-11-01T06:54:00.000-08:00

This is the first installment of my NaNoWriMo novel, "Shades of Grey" I wrote this today from 2:30 to 3:30 AM... yes, that's right, I've been up all night, but that's okay because I'm sky high... I will update as the day progresses... There is no picture with this post because no Blogger kept barfing everytime I tried to upload one...

He tried to warn me. He did his level best to warn me, to warn us all, but we, in our ignorance, paid him little heed. Oh sure, I thought it was just because he hated squirrels. Most dogs like to chase them. But my dog had a special reason for hating them. He knew what they were really attempting to do.

Even as he got old, and he got very old, no matter what, those squirrels would get him up off his dog bed. Up and barking! He would chase those squirrels away with such vigor. It always amused me the care he took to chase away those little puffballs of grey fur.

When the neighbor’s cats decided that liked our yard better than theirs, my poor old dog didn’t give them so much as a woof! No, “hey you! Outta here!” for them. It was pretty funny. We would come into the kitchen to see one of them chowing down on his dog kibble, inside his dog food bin. His attitude was “eh, let ‘em be, no harm, no foul.” One of them was always getting inside at night… some watchdog he was... not even a bark to let us know what was up… The neighbor’s cats would be on my counter top, eating my bread. I finally had to go get a metal breadbox.

But if a squirrel so much as poked it’s little head anywhere near our yard, well he’d be up and barking. It would wake him out of a sound sleep, and believe you me, that dog could sleep soundly.

It is only now that I know what he was trying to do. I couldn’t understand at the time, but now I know better. Now we all do. Well, the ones who believe understand anyway. Invaders.

My name is Debby Shiloh, and this is my story. I thought I was going to grow up and have a normal life. Grow up, go to college, meet a great guy, have kids, a great career, you know, all the normal things. And for the most part, I had those things. I did grow up. I went to a great college where I majored in Computer Information Systems, got a great job. I have a wonderful husband Greg and a really great son, Jack. Well, as great as teen-aged boys gets I suppose. I have a really great job as a Network Analyst for (really Big Company) where I get to travel to set up and trouble shoot networks all over the country. I have a beautiful house just east of Seattle. I live in the posh neighborhood of Bellevue, which always makes me laugh.

My house and neighborhood were built in the early ‘50’s. Mid-century archetecture split level house, a perfect example of that style of building. Yes, interiour decorating and archecitureal details are one of my many hobbies. I remodeled my kitchen practically single handedly. I had a lot of time on my hands during the dot-com bust…

But everything changed when I got sick last year.

I started having all these really bad headaches. I mean, they were really, really bad. Searing my brain bad. And other things started going wrong, health wise too. I would have terrible fatigue, where I would sleep for days on end. I’d come home from work, and just head right for bed. Not normal behavior, not for someone who normally had lots and lots of projects. I had a lot of other weird symptoms, and I saw a lot of doctors who only wanted to treat my symptoms. As a geek, I naturally want to know the root cause of the problem; I want to know why there are symptoms. Finally, I got to the cause of my trouble all right.

I was diagnosed with a brain tumor.

I will never forget that day. Never I think. I guess its’ something that sort of sticks with you. I don’t think that it couldn’t not stick with you. Something you always remember. Your first kiss, your first time you have sex, the first time you get a traffic ticket, the birth of your baby. Some things just stay with you. Etched into your memory as permanent as can be.

Greg wasn’t able to make that one appointment. He had a meeting that he had to attend, and so he didn’t go with me. We didn’t think it would be anything monumental. None of our other appointments with the doctors ever turned up anything, so why would this one be any different? Famous last words as that turns out.

This was my third appointment with this particular doctor. The first two were not very impressive, just your normal specialist doctor’s appointments I guess. I do remember that I was running a little late, I’d been really tired that day, and I felt like I was moving in slow motion. Like I was in one of those allergy commercials, in a fog or a blur. A haze. Anyway, I just was not my normal me, if that makes any sense. I’d been to get an MRI and a MRV and the doctor had the results from the radiologist.

The doctor’s nurse had me go into the doctor’s office and wait while she was with another patient. I was listening to my MP3 player; I had my mix of New Wave dance music playing. Devo was playing. At the time, the irony escaped me, now I have to laugh about it. I was sipping my cooling latte. I know it’s a cliché, but sometimes the things we do are clichés. Lattes in Seattle. Almost as much a cliché as the rain, although just as true. I heard her come in, and I took off my headphones.

She sat behind her desk, put the report down, and just looked at me. What doctor just looks at you? Then she told me. Told me what they found. What the radiologist found.

Tumor. The word haunted me for a long time. Or at any rate, it felt like a long time. I know that it echoed in my head, tumor, tumor, tumor. Like the word itself was something terrible. Something that I couldn’t accept all at once. That I had to keep coming back to.

There is an expression, that someone is dogging you. I always thought that expression was just something colorful, but then I had a dog that actually did dog me. She would follow me everywhere. And I do mean everywhere. To the bathroom, the bedroom, the kitchen. Everywhere I went, that dog had to be right with me too. She just couldn’t stand to not be near me. She dogged me. Sure, it got a little annoying at times when I’d want to be in the bathroom, by myself, thank you very much. But it was also endearing.

The tumor dogged me. There was nothing endearing about it. Tumor.

Tumor.

2006-10-28T17:06:00.000-07:00

The week so far...

As you know, I've been using the Snowflake Method to model my novel. I still don't have a name for it, but I'm at steps 6 and 7 similtainously, creating a 4 page synopsis from the one page synopsis (ok, page and a half synopsis) and full fledged character charts. From there it's step 8, create the spread sheet with the scenes. I should be all plotted and planned in time for the start of NaNoWriMo!

Here's what I have so far...

Before she got sick, Debbie Shiloh had been a very successful communications annalist with (BIG name) Company. They found the tumor in her Palfitzer gland, which as you know, nestles up close to the pituitary gland. The Palfitzer gland is thought to be the source of a person’s magic base, and in the rare case where a tumor forms, they must be removed. When Debbie when in to surgery to have it removed, she ended up having a seizure while they were removing the tumor as a complication to the surgery. After the surgery, and as part of her recovery process, her doctors put her on medication that completely surpassed all activity in her Palfitzer gland. This medication was backed up with spell support to make sure that the gland was completely paralyzed so it could heal properly. But once returned home, she started to hallucinate. At first, it was small things. Like a fire in the oven, when there shouldn’t have been one. Then it progressed to seeing people and small grey blurry images that would whip by her feet when she wasn’t expecting it.

When she was having a good day, she was out back doing some yard work and removing some vines from trees. She stepped on one of the squirrel’s network nodes (that look like oak tree acorns). She crushed it against a rock. Because the summer had been so dry, the electronics inside the communication device sparked on the dry leaves, starting the slow burn for the fire. It wasn’t a big fire, and the fire department is able to put it out without too much trouble. The one neighbor loses part of a fence, and the fire’s cause is listed as unknown. She decided that now is the time to clear the one area for a open room for summer-time sleeping and general hanging out. While Debby was out poking in the rubble of the burned out woods, she finds a burned rubber ducky (for the Seattle Duck challenge), and some odd assortment of toys. While she is working on this, Mr. Tibbles starts talking to her, and makes it known that he can talk to her. He introduces her to Marrok and together they start to explain about the squirrels and all that those strange toys she finds are not toys at all.

After speaking with Mr. Tibbles and Marrok for a while and after examining the evidence, she becomes convinced that there is indeed an invasion. She starts trying to convince people of this. Several people are convinced, but they don’t understand -- they think the squirrels she is talking about are real pest invaders from a different part of the planet, not space invaders. She gets put into a loop with the local fish and wildlife folks. They completely do not understand that she’s trying to explain that this is a space invasion, not a pest thing. Her nurse is convinced that she’s gone mental, and convinces her doctors and family that she needs to be placed in hospital for “a period of observation.” Just to make sure that her medication is stable and that she is not a danger, just slightly bonkers.

While Debbie is in the hospital undergoing tests of various flavors, the squirrels launch the first attack. However, while she’s in hospital, her husband starts to examine the weird toys, and her son explains that they aren’t like any toys he’s ever seen either. They discoverer that something else is at work, Perhaps she is not imagining this squirrel thing after all. The squirrels launch a concerted attack on several power substations, and they choose to launch their attack under cover of a massive regional thunder and electrical storm. However, they are not expecting so much of the area to be heavy magic run, so the damage is not as great as they expected, Their goal is to shutdown the Puget Sound Energy Basin and the Hydro Dam Systems, but they do enough damage to get the attention of more than just the Fish & Wildlife department

The first days after the attack have all kinds of wild speculation about just what happened. It is not until later that during the clean up that odd things are found at all the affected sites. Workers from The Division of Energy discover the mess left by the squirrels. Some of the odd things include too much plant material that shouldn’t be there, some of it is actual alien squirrel technology. Debby and her family receive a cryptic message from a mysterious person, vindicating all her warnings.

Now for real life.

I spent much of the week crashed. I ended up with one of my terrible headaches that sent me to the ER. The jerk doctor accused me of drug seeking, of not even having Cushing's. The fool obviously knows nothing about endrocin tumors. So, he told me that they won't be treating me anymore in the ER, I don't even know if they can turn me away, so I'll be calling the patient omsbusman at the hospital, and see if they can refuse me treatment. My endo faxed them information on 10/2, and somehow it's MY fault the hospital lost those records? The Jerk ER doc kept wanting to know why I haven't had brain surgery yet. Hello! this is brain surgery, not some ellective surgery for an in-grown toe-nail we are talking about.

Jerk.

Anyway, I don't know when I'm going ot be having surgery. I'm still in limbo about that. And I'm still facing yet more and more and more cycles. I feel that I will never never be free of this. I'm hurtling towards another crash and there is nothing I can do to stop it. And then the next crash, and the next one, and the next one after that.

Last night my husband and I went to the Seattle Opera's production of The Italian Girl in Algiers (L'italiana in Algeri) sung in Italian with English supertitles. It was my second opera, the first one was also a Rossini, the Barber of Seville. Madcap and silly!

My 100th Post!

2006-10-22T07:12:00.000-07:00

Weekend check in...
I'm doing well with the wean off the Dope-o-max! Hurray! Still haven't found a new neuro, the new one that my PCP referred me to doesn't exist So, that means she either saw me coming and quit, or my doc is referring me to imaginary doctors.

I don't know if the wean from the Dope-o-max is having an effect, but this High feels higher than the last high. I don't know if I feel this way simply because my Cycle is getting shorter, or if there is something else in play. But I do know that I had a "regular" headache yesterday, yeah, I know. Well, it was layered on top of my normal everyday headache, but it wasn't a "Countdown" headache, and because I'm High, it obviously wasn't a Crash headache. A couple of OTC pills and I was fine. Yeah, I know! amazing!

I'm having a lot of fun with gearing up for NaNoWriMo. I've got my Novel almost all plotted out, my characters are almost all fleshed out. Wednesday I wrote a thousand word short story for a Challenge as part of the Seattle Chapter, and Thursday (ok, it was Friday between 2:30 and 4:30 I wrote 1,000 words of dialogue for another Challenge. I've never done dialogue before, but it turned out pretty good. It's just a couple of women having coffee.

Tonight I'm actually going to a party, a costume party for a Halloween theme party. A friend is turning 40, which is a great age. I liked turning 40. It meant for me, I was an official grown-up, and I didn't have to take Koi from anyone, ever again. Not even from my mom. I'm going to cheat though, I'm not going in a costume, I'm simply going to wear my most FAB belly dancing outfit. Mike's gonna borrow my pirate gear though.

I am now EXALTED with Frostwolf Clan. I think that will mean something to only other hardcore gamers. As you know, I play World of Warcraft, or WoW, but I simply cannot play when I'm Low. Can't do it. I've tried, and I just can't do it. And I can't play when I'm Super High either. (last night I told Jamie that I was Potaoe High) I have no idea what that means, but it's a pretty good indicator that I'm whacked... So, if my post seem extra-extra silly, I'm blaming the High.

Now if I can only keep from braking out in freaker/tweeker... yesterday Spud make me drink vodka. That's how high I was, and how concerned he was about that High. I'm out of medicinal rum though...

The party last night was great. And quite the victory. On so many levels it was a victory. I was High, so that was a victory, I didn't let the fact that I knew only the birthday gurl stop me. I didn't let my fear of strangers or strange places stop me. No sirey bub! We went and had a mah-vu-lous time! It was really, really hard at first, and Mike wasn't helping. I know he was trying to help, but I was overwhelmed, and his being overprotective wasn't helping. But I got a grip and had a great time! The band was great, called 8-track, and they did covers of all the great 80's hits.

Today's art
Today we have last year's pumpkin. I'm gearing up for Halloween. This is the front of the pumpking. I didn't carve through it here. The back, which I didn't get a picture of, had a cut out of a mouse that threw a shadow (and let in the oxygen so the candle wouldn't go out...). I will be carving two of the "fake" pumpkins this year as well as real ones. Well, that's the plan anyway. I'll definately be carving one fake one. I've already got it, just have to decide what the design will be. Shade carvings don't work well with those types of pumpkins, gotta be a full cut through.

2006-10-19T17:02:00.000-07:00

The Aristocrats!

A man walks into a talent agent and says, 'Have I got the act for you!'" Squeezed into the talent agent is more like it. The man was corpulent; there was no getting around that. He weighed 300 kilograms if he weighed a kilo and the talent agent wondered how the man even fit through the door. On the other hand, the agent would have wondered if that was part of the its programming.

It’s not often one runs across someone this large, the prospective client is quite remarkable on his own; he would stand out in any crowd, in any of the settled planets. To say he is massive misses the mark; it just does not capture the bulk of the man. The client not only fills the frame, the focus is not wide enough to capture him completely. He is dressed fashionably, and obviously takes pride in his appearance. There is a sparkle in his eyes, and his short black hair curls softly around his ears.

Scanning the man’s chip, the agent produced a suitable chair for the man. The chair blank in place quickly and quietly morphs into a comfortable yet sturdy chair and a half, upholstered in pink cabbage rose chintz.

While the chair was designed to be physically comfortable, the chintz fabric was specifically designed to unnerve the man, ever so slightly. It did its job. It was designed to give the talent agent a little more of an upper hand in the dealings that were to come.

The man lowers his bulk into the proffered chair and waits for the Agent to appear. There was a time once when receptionists were quite common. Now those niceties belong to only the highest level of society. While this was a posh area, there are levels of classy and this did not quite rank a receptionist. Almost, but not quite.

There are rumors that there was a time long ago when talent agents were actual people, not rooms. Now they are all automated, robotic and holographic. The talent agent scans the man and quickly determines the best hierarchical Talent Agent Hologram to use with the man. The Keith model is chosen, very generic, and very bland.

While the Keith could have quickly materialized or morphed in front of the prospective client, it was considered poor social convention for humanoid objects to do this. While it is certainly done in some sectors, it is frowned upon in more polite circles. This being a posh talent agency, the Keith simply used the cover of the side door to materialize.

The Kevin sits directly across from the client. Nothing like a little face-to-face with human males to create a little tension. All the better for bargaining. He touches a small button on the desk and a carafe of ice water with two companions glasses materialize on a tray to his left. He offers a glass to the client.

The man introduces himself. “The name’s Kepton, Norton Kepton.” But of course, the talent agent already knew this. The talent agent already knew many things about Mr. Kepton because it has scanned his public H chip the moment he’d walked into the agent.

The Kevin waited a moment while Norton greedily gulped down the ice water, not so much finesse to the fat man’s drinking style. It should have been obvious to even the casual observer that Mr. Kepton was using the robotic enhancement though help maintain some mobility but it was still going to be a struggle to move that much personal mass around. It didn’t matter if you were a heavy worlder or not, 300 kilograms is 300 kilograms is still extraordinary amount of weight to move.

When Norton poured himself a second glass of ice water, the Kevin knew this was his cue to start his sales pitch.

“Welcome to The Sparkle Sky Talent Agency, Mr. Kepton.”

“As you know, we supply The Imperial Cruise Experience almost exclusively. While we do handle other companies and other liners, The ICE makes up the bulk of our business. While most Talent Agencies manage their talent, we are more concerned with our contracts with our large customers. That is where our loyalties lie. It is important for you to understand that up front.”

“I assume you manage this act?”

Mr. Kepton nods, although not entirely enthusiastically. He reaches into the folds of his blue velvet robe and produces what looks like a sheet of holographic paper. He places this on the desk in front of himself. “The act is not your typically act, but you will understand once you see a performance.”

Norton, of course, had done all his research. He knew that The ICE was not small time. He knew that one typically did not just walk into The Sparkle Sky Talent Agency with dog and pony shows, or small acts. Only the best acts would do for The ICE, and he was confident that his would meet the criteria.

“So, Mr. Kepton, tell me about your act, and how they could possibly serve the discriminating tastes of the passengers of The ICE?”

Norton smiles and settles back into the depths of the chair. If it had not been created specifically to handle his bulk, it would have groaned ominously.

“It’s an aerial act. Meet the Duchess.” He leans forward, lightly touching the paper in front of him. A tiny lavender shooting star leaps from the page and hovers at eye level. “Now the Viscount and the Palatine, if you please.” An emerald green and a crimson star join the lavender one. Norton whispers something quietly to the lights and they begin to swirl and twirl about each other. “Now the Baronet and the Dame please.” Yellow and orange stars leap off the page and join the others in an aerial ballet, dancing to music that slowly becomes audible. As the music becomes louder, the lights become larger, more than just points of light, they become fairy royalty. Fairy princes and princesses.

It is only later that The Kevin realizes that as the fairies become larger, Mr. Norton Kepton shrinks smaller and smaller, until he is the size of an unremarkable man.

"The agent asks, 'and what do you call an act like that?' 'The Aristocrats!'"

(This short story is from the Seattle NaNoWriMo 1K Thursday challenge. I had to use the beginning and ending sentences and write a story that fit.

The fish pictures I drew on one of my last trips down to OHSU.

I'd had a really bad day. I mean, it was about as bad as they come. I'd gotten lost in Vancouver Washington on my way down to OHSU. I was supposed to drop a UFC and have a blood draw, which was fine, but then I got lost. I never get lost, not like I did. I couldn't remember my husband's work number. The one he's had for 10 years. It was bad. Really bad. Everthing just seemed to suck. They didn't even have rooms at the hotel we usually stay. I was a total and complete wreck.

But that night, to console myself, while I was eating dinner, I got out my pad of paper and my pencil pod and pretended that I was a famous artist from Seattle. I was a famous artist and I just drew. My husband found me a hotel room before it got too dark to see, and I of course got lost on the way there. But it was ok, because I was a famous artist... Play acting and denial are useful tools...)

2006-10-18T12:07:00.000-07:00

Poetry Wednesday

These haiku are all inspired by my experiences with Cushing's. Hopefully the words today will paint the picture.

8/15/06
tossing and turning
insomnia is my bane
elusive slumber

REALLY PISS ME OFF!
Cushing's makes me so cranky
looks like the High's here

Look! It's 4 AM
the time between day and night
wish I was sleeping

UFCs crucial
for tyranny of the jug
pee into the hat

8/24/06
swollen abdomen
told that I'm not fat enough
a Cushie's heart break

8/31/06
My head is pounding
moving fast than I thought
tomorrow at noon

I'm wired that way
random thought not nearly so
I'm weird that way

freaker or tweaker
like I'm all spun out on speed
too much cortisol

9/30/06
my head cracks open
thoughts spill out like brilliant leaves
what was I saying?

10/12/06
tumor crescendos
narcoleptic butterfly
laying me out cold

10/18/06
platypus are rare
can't possibly exist here
look at me right now

2006-10-17T15:41:00.000-07:00

The Art of Distraction
We know is how magicians work their magic, how they misdirect our attention so they can razzle-dazzle us. We also know this is how con-men work their dark arts on us as well.

I’m performing my own sort of art distraction on myself. I’m trying to fill my attention with my new novel. I’m trying to also continue to fill my time with my artwork. It’s difficult to fill your attention when you have such a short attention span. And that’s one thing I realized last night, my attention span last night has cropped. I think part of this is because I’m so distracted waiting to hear from The Tumor Board. But part is that I’m just not able concentrate. Chronic pain will do that to a person.

But I’m filling my time right now learning how to write a novel. One of the tools I’m using is The Snowflake Method by Randy Ingermanson. I’ve signed up for his zine, and I figure the man has something to teach me. I’ve been crawling the boards and forums at nanowrimo trying to learn as much as I can about character and plot development before I can start writing. I’m also making heavy use of the character sheets and other resources I found at the National Novel Finishing Month site, NaNoFiMo. It’s a spin-off site from nanowrimo, and I’ve found it very useful. I found it while digging through the forum. I think it’s worth checking out.

So, I have several of the characters, in outline form. They aren’t even line drawings. Just vague shadow forms. Need to get cracking with those cool character sheet tools I was just bragging about. But it’s just so much geek fun playing with the active forms Pookel has, with the drop down boxes, too much fun to actually get any real work done. I need to poke around on the forums and figure out how to make my main villain not cardboard and cartoon like, anymore than he has to be of course.

I don’t have a name for my novel yet. Still working on the plot out line too. I had fun with a new character tool today. Apparently you run your character through the Mary-Sue test to see how believable they are. I ran myself though it, I’m apparently not very believable as a fictional character. And they didn’t even have any of the weird Perils of Pauline plot twists I’ve had in my life. If your character has greater than 56, you need to seriously rework that character. According to one test, I personally come out with a Mary-Sue score of 110. I think it will be fun to see if there are other people out there with ridiculously high personal Mary-Sue scores.

It’s kind of funny, that November 1st deadline, when there is no writing permitted, sort of like the excitement for when I get presents and gifts. Everyone makes me wait to open those packages. I don’t’ care who that package is for, it needs to be opened, NOW!!!!! No taking it home to be opened later, open it NOW!!! I’m such a child. “Whadja get? Whadja get? Whadja get? I wanna KNOW!!!”

Speaking of it’s, I need to figure out once and for all the difference between its and it’s. I’m just going to have to get a yellow sticky and stick it to my monitor. That and the difference between affect and effect. I have no idea why those just won’t stay in my brain.

Well, I think I am going to go work on my latest painting. Ok, I have no idea if I can call it a painting if I use pastel oil sticks, but since I use mixed media, the pastel oil sticks and water color I call it a painting. Of course, I might just do the back ground in oil sticks… I suppose it doesn’t matter as long as I’m the artiste and I’m the one doing it. I can call it a painting if I so choose.

(and WooT! I'm Exalted with Frostwolf Clan! My son's so jealous.. and I’m back to being Stone Guard. I really wish I could go on some serious raids. I can do some grinding, but anything serious is out of the question for now. )

Today's art I call "Coffee with Capt'n Jack" It's for my favorite Banded Pirate Chiropractor in OR... Graphite

2006-10-15T04:07:00.000-07:00

Crash so soon

I don't know if anyone else with Cushing’s is able to predict when their tumor shuts off, and I don't know how severe their fall is.

I have degrees of shut-down, and falls. Typically total shutdown happens at 1:30 AM, but I've had 4 shutdowns now that were not Dex induced at about 1:00 and one at 10:00. (Told you I journal everything) The hardest ones I will have the feeling that I'm absolutely smashed out drunk, unstable, slurring word, not able to walk a straight line, not coordinated. Well, less coordinated than usual anyway.

The first time this ever happened to me I was about 28, and it woke up out of a dream where I was at a party. I thought I just dreamed a powerful drinking dream.. but that's one reason I know I've been Cushing’s for a very long time. That was the summer I gained 50 pounds in 2 months.

After being told that my headaches are nothing more than narcotic induced rebounds, and that I was a drug addict, I decided that I had to journal when I use them as well. (don't tell me you didn't see that one coming)

I need pain pills two days before the tumor shuts off, the day it shuts off, and then the day after it shuts off. This is when it gets really bad, like ER trip bad, usually.

The noise gets the loudest, typically, just in the couple of days building to a shutdown too.

Right, anyway, The Noise started getting really bad a few days ago, and I started taking pain pills a couple days ago. I popped High a couple days a go. Well, not terribly high, more like “Normal” than High, but I was able to get things done. Like the dishes. And most of three loads of laundry. Small victories.

I know in the WLS community we have NSV, our Non-Scale Victories. I think we have to have something like this too. Something that we recognize as victories over our Cushing’s. I know that part of the problem is that for some of us we just physically cannot do many things that we need to, like the laundry or the dishes. Or things we want to do, like go shopping or stay awake to watch a TV show.

My tumor shut off this afternoon at 1:30 while I was grocery shopping with my husband. I hoped that I would have an extra day of being High, but I didn't. My last Crash was Monday, and here it is Saturday. I did have two days of being High though. But 2 days of terrible headaches, 2 days taking pain pills. Pretty much like I expected, given my pain journal.

My tumor shut off at 1:30, the small coma, the peu de mort, the little death, lasted just shy four hours. Gotta love Babel fish!

I don’t know how much longer this can last. I don’t know how much longer I can go. Monday morning I’m going to page Chris and see if there are any answers for me.

But darkness calls. I cannot resist the warm embrace.

2006-10-12T13:37:00.000-07:00

Hurray! It’s almost NANOWRIMO time!

The most magical month of all! Okay, so that might be a little hyperbole. But not by much.... I mean, not only do we have nanowrimo, but we have Halloween, Thanksgiving, Yule and Christmas! Then New Years! I’m hoping that I get to get cured of Cushing’s too, which will make it even more magical and special!

For those of you who don’t know: National Novel Writing Month is a fun, seat-of-your-pants approach to novel writing. Participants begin writing November 1. The goal is to write a 175-page (50,000-word) novel by midnight, November 30.

I found out about it last year from my friend Lori, about 5 hours from the start. I wasn’t able to finish, mostly due to my life imploding from the Cushing’s. This was pre-diagnosis.

Mind you, I don’t know if I’ll be able to finish my November Masterpiece, but I’m going to give it a go. Dunno yet what it’ll be about, haven’t figured out a plot yet. Heck, I haven’t even gotten as far as a subject let alone plotting. No idea on characters, or setting or anything… I haven’t a thing to wear! I’d better get cracking. I think it might help me to do an outline, if only it helps me know where I’m going.

I got my e-mail today letting me know that it’s almost time. Pretty exciting. Tomorrow I am going to attend a workshop at my local library for short story writing. It will get me out of the house, and that will be good for me. It will poke my brain, hopefully stirring up some activity, rubbing those last two brain cells and warming them up. Yes, I know, short story writing and novel writing are only similar in that they are writing. I don’t care. Gonna go.

There is one theory that really good novels are written by short story writers. They cut out all the fat, cut out all the extraneous and superfluous words that clutter the landscape. Others will argue that it is exactly those seemingly additional and irrelevant that add texture and shading, shadow and nuance to the picture. Sort of like the difference between a line drawing and a fully rendered model I suppose. Each beautiful in their own way. Just a matter of taste.

Still no word. STILL NO WORD!!!!! AHHHHH!!! How much longer are they going to make us wait? I know, I know, patience is a virtue. I know. I just have to be patient one more day. That’s all. Just one more day. That’s all. Just one more day. I can do just about anything for one day. If I don’t get The Call today, I can call Chris tomorrow. I just can’t call her and bug her before then. Oh sure, I WANT TO CALL HER NOW AND IS THERE AN ANSWER NOW? NOW? IS THERE ONE NOW??? POKE POKE POKE

But that probably will not endear me to her, probably not at all. So, all I can do, I try to patiently bide my time. Drink my ginger ale, take my zofran, and try to find something to amuse myself with, short attention span and all.

Oh, my neurologist fired me yesterday. I’ve been having issues with the dope-o-max he put me on. He thinks my only problem is that I’m a drug addict. That I’m having rebound headaches.... of course, that makes those the MOST POWERFUL DRUGS EVER GIVEN since they gave me rebound headaches before I ever took them. Yup, they are THAT powerful. Idiot neuro. Besides, any competent doctor should know that 40 to 60% of all pituitary tumors do not show up on standard MRIs. Most pit tumors are smaller than the standard 5mm slice they use in MRIs… Anyway, he fired me, and my regular doc is none too happy about referring me to another neruo.

Think I should just call every day and ask whether there’s been a cancelization at the idiot neuro’s office? But the only problem with that plan is that I would then have to go into see him. I seriously doubt that I would change his mind about my headaches. The whooshing will never stop. The headaches will never stop, at least not until I get this damned tumor removed.

But his opinion made me take a hard look at when and how I’m using my pain killers, so it wasn’t all for naught. I get the worst headaches in the couple of days just before my tumor shuts off, the day it shuts off, and typically the following day. The pattern has been that once a month it gets so very bad that I have to go to the ER for pain meds, but since my cycle runs about three weeks normally, that would fit, just about.

Anyway, I hope to get THAT call today! That call that will end this ride from hell.

Today's image is from Snoqualmie Falls, here in Washington State. I took this pix a little down river, and then did some digital manipulation. I call simply, Rock at Falls. If you ever get a chance to go, you really should.

2006-10-11T06:21:00.000-07:00

Ranting and raving.... About video games…

First off, so far, this is not one of my bits of art work. I pulled this directly off the World of Warcraft Player vs. Player (WoW PvP) site. I just wanted to make that clear. Also, I mostly play a female Troll, not a male, so that also needs to be cleared up.

I MISS WoW!!! http://www.worldofwarcraft.com Whine! Whine! Whine! Whine! Oh yeah, whine some more. Stupid Cushing's. When I'm really High I can't play because I get frustrated and want to throw things at the idiots in the battle grounds who just don't understand a thing about tactics or strategy. Heh, my cortisol gets so High that I get... well a bit unreasonable. Okay a whole lot unreasonable. But the other thing when I get High I want to physically do things, like yard work. Or run around in circles like a crazy woman, but that’s a different story.

http://www.worldofwarcraft.com/pvp/rewards-mounts.html

When I’m Low or on the Low end of Normal, I can’t play WoW because it sucks up all my cortisol. Part of the same reason I can’t drink. Well, I don’t want to drink when I’m Low, but when I’m Low or Low Normal, I need to conserve all my cortisol.

I just really miss WoW. I feel like I’m never gonna get my Black raptor. Like I’m never gonna make Lieutenant General (rank 11). And I’m never gonna get my Black War Raptor. It sure doesn’t help that I lost 2 ranks. I’m back to being a First Sergeant. Whine, whine, whine. I’m not gonna get my PvP gear, and I’m not gonna get my Beast master gear. Whine, whine, whine.

I play on Thorium Brotherhood, a role playing server. I originally started on a PvP server. It got too much for me with all the ganking. I just couldn’t handle it. I know, I know, big whiny baby, gotta play on a care-bear server. I don’t care. I have trouble some days with the mobs that I don’t need to worry about being ganked. And I feel bad ganking people in return. I just feel bad. Now, the Battle Grounds, that’s different. Everyone is ready, everyone is prepared. It’s sort of like going paint-balling without the bruises, and without getting my acrylic nails destroyed by the paint balls. I don’t know what it is, but the paint in the paint-balls simply dissolves my acrylic nails. Not that I currently have acrylic nails… and not that I currently have the energy to go paint-balling… but when I do, and when I do… well, you get the picture.

Anyway, my younger sister prefers to play on a PvP server. I don’t remember off the top of my head which server she’s on right now. One of the relatively newer servers, about the same age as Thorium Brotherhood. She’s got a hunter as well, but that’s all I’m telling. For now.

I don’t play FPS games. Those are First Person Shooters. I can’t handle the video aspect. It will give me a headache and make me want to barf even without being on a Low. I’ve never been able to handle the video aspect, and I don’t hold much hope that I’ll ever be able to handle it. My older sister and my mom on the other hand, they really like FPS games. My mom went into her local video game store and was looking for the latest and greatest FPS that could be played stand alone. She doesn’t have the best luck with internet, being somewhat rural, and more than somewhat... well, not competent with technology... (She once deleted all the .dll files in her windows directory because she never used them. If you don’t understand why that’s a baaaad thing, that’s ok too.)

Anyway, she went to the video game store and wanted buy the latest and greatest FPS. The uber game boys thought it was for her grandson, but when she explained that it was for HER and that she’d worked her way through all these other FPS titles… they now think she’s the coolest little old lady on the face of the planet. Little do they know… little do they know… muahhaa hhaaa hhaaa

I really hope that I’m better by the time Burning Crusades comes out. I’m not sure exactly when it will be released. You know game release dates. We are promised one thing, but then they actually ship on another date. Or worse, they ship on the date the marketing weenies promise, and we get a buggy product. Same with the entire software ecosphere.

Oh, and don’t even get me started about Spore! http://www.spore.com If you want to make me cry, start talking about how they have slipped their ship date, AGAIN!!!! Spore comes from EA games, the makers of The Sims, The Sims2 http://thesims2.ea.com/ and of course MULE! My Sims2 town is almost completely populated by aliens. Woot! I don’t have the latest expansion pack, but not being gainfully employed has put a crimp in my playtime.

Lately The Sims2 is easier for me to play than anything else. I do play lots of puzzle games on zone.msn.com. Well, maybe not lots, but that’s more my speed than anything else. I find them meditative. I always have. My son, Mr. Gameboy-oh has always been in awe of the scores that I rack-up, but I don’t think they are terribly impressive. He has beat me once at Chuzzle though. One of the high-lights of his life, the day he beat his mom at a puzzler game…

Heh, sounds more like I’m a teen-aged boy-oh rather than some respectable matron. But I suppose that’s part of the point, isn’t it.

2006-10-07T10:45:00.000-07:00

Waiting for the Call 10-6-06
Today Monica and I are having our cases presented before the Tumor Board. It's sort of like we have turned in all our tests, we've presented our case, argued and defended our side, researched and presented for examination for the most rigorous test we have ever presented for. And now it is out of our hands. It is like waiting for Finals, like waiting for the Masters board to meet, or the MBA. We think that after this they should just hand us another degree.

I think I won't hear anything until next Thursday. I'm dealing with an Academic institution, after all. And school is my career, if you will. They have their own pace.

And as compassionate as Dr. L is, when I call in the middle of a freaker/tweaker he's not interested in making it stop, he's only interested in getting me to TEST. How can I get to a lab and get blood drawn. Can I drive in the middle of one of these? Hell, I can hardly string a coherent sentence together and he wants me to drive to a lab. Don't get me wrong, I love Dr. L, but he is a researcher, and sometimes they have their priorities a little skewed. He told me that I was going to hate him, since his priority was to find out what was going on with me while I was in the middle of on of those episodes, not to make it stop.

So, I can really appreciate it when folks are tired of testing, honestly I can appreciate it!

Speaking of researchers, I'm still having mixed results with my experiments with licorice. I was able to wake up NORMAL one morning, but it seems I need to keep eating licorice throughout the day to maintain the normal status. I will continue to track my progress. Dang, this means that I better start keeping a lab book! dang it.

Yesterday just before I went to bed I had a minor crash again. Like I was moving in slow motion. It was pretty funny. I figured that if I was doing tai chi during one of these slow motion phases, it would look like I'd completely stopped! HaHa! Too funny!

Anyway, the rains seem to have returned here to the Pacific NorthWe(s)t (the "S" is silent) I went out and got a box of fire logs. I almost couldn't get the box out of the cart, and there was no way I could get it out of my trunk.

I have to get cured soon.

Good thing I have a "freakishly high amount of testosterone" in my system.

Mike is going to Idaho today to get the rest of my stuff. I won't be returning to school soon. It's a hard reality. But soon is not never. And I realize that I won’t be using my spinning wheel there. I just won’t. And besides, that dry, dry climate isn’t good for it anyway. I’ve decided that when I return, I’ll bite the bullet and get room mates. I’ll just get housing in the new housing they built. It’ will be nicer than living in the old Travel Lodge.

2006-10-05T11:17:00.000-07:00

Hurray! The Neuro says my MRI is clean!, and there is no whooshing in my head either!

*warning* Sarcasm Alert!!

Hurray! I just got off the phone with the neuro's office, and the report from the MRI & MRV is back! They said I don't have any tumor and there is no reason there for my headaches! Party time! Wooo

Apparently, my headaches are solely caused by rebound from taking narcotics, and I need to wean myself off them. But if I don't have a pill for weeks I'm fine, and it's only when I hit a Low that I have headaches..... They couldn't explain to me why I can go for a week or more when I'm swinging High and am actually HIGH and don't need any pills and don't have any head aches (but still have the whooshing), yet still have my headaches still be caused by rebounding from the narcotics. That line of reasoning is gonna give me a head ache even though I don't have one....

They haven’t been able to explain how I’ve had rebound headaches from the narcotics from before I was prescribed the narcotics. Probably the tumor they say I don’t have is not giving me the headache…

(for those of you who are just tuning in to the fine art of diagnosing pituitary tumors, most pit tumors are small, very, very, very small. But that’s to be expected, given that the pituitary is about the size of a pea. Dunno if we are talking about a petit pea or what. But that gives you an idea of what we are talking about. Most MRIs don’t read anything smaller than 5mm, which is very large for a pit tumor. And most pit tumors don’t show up on imaging anyway. They are sort of liquid and squishy, not lending themselves to traditional imaging techniques.)

hmmm but if I don't have a tumor, how is it spilling ACTH?

Anyway, I was none to nice to the nurse. She started it. But you know what? She works for ME. And she doesn't have any way to stick me with a needle so I don't care.

When I went down to OHSU for my Dex I took the CD with the very cool entire brain image that proves that someone has a brain, so the team there has that disk.

I just looked up "rebound headache" so I suppose I shouldn't be so hard on the neuro.

http://www.dummies.com/WileyCDA/DummiesArticle/id-1757.html f some of the following signs apply to you, you're probably having rebound headaches (but be sure to see your doctor for evaluation of your problem to confirm that it's a headache and not something more serious):

* You suffer from headaches daily or every other day.

* Your pain intensifies about three hours after your last dose of medication.

* Your pain medications don't work as well as they used to.

* You take more medication, but your headaches are worse.

* You rely on more pills, and you take them more often.

* You take medication even for mild headaches, and you often try to ward off a headache by using a medication.

* You take pain relievers three to four days a week, and you average more than three tablets per day. (This depends on the kind of medication you're taking, so you'll need your doctor's advice.)

* Your pain runs the gamut from mild to moderate to horrible. Usually, the pain is a dull ache that you feel on both sides of your forehead and, sometimes, on the top or back of your head.

* Your headaches occur much more frequently.

Because you're in pain, you may use medications too often. The theory behind the rebound headache is that the overuse of drugs makes the headache rebound after your body has absorbed all of the medication. Painkillers are supposed to relieve pain, of course, but if you overuse prescription or nonprescription drugs, they can turn on you and actually cause headaches.

***

So, most of those actually do apply to me, other than taking pills for mild headaches. typically, I don't take anything for less than a 7.5 on the pain scale. I don't know if this is the way it is for most folks. My background is pretty much a 5, and I don't even bother with over the counter pills for my head. Body aches, yes, but not for my head. They won't do anything for my head, so I don't bother.

Of course, my headache started in Nov 05, so it can't get any more frequent that ALL THE TIME. And the top of the head and the back, is pretty typical for the "Cushie headache" no?

And yes, my headaches are getting worse, but over all, my Cushing's is getting worse.

I know the doses I take seem large. I guess the normal person would be dropped like they'd been darted, but two percaets don't even phase me. I'm pretty sure that if I gave my Spud half the dose I take, he'd be rendered unconscious for week. Spud out weighs me by 25 pounds. When I go to the ER for the head aches, the amount of duladin makes the nurses double check because it is such a huge dose. And again, they have to give me two doses.

But I'm not taking pills all day every day. Or even every other day.

I suppose I ought to cut the man some slack. Not cutting the snotty assistant any slack though.

Of course, when I next see him, I'll have to bring a print out of this, and with point/counter point.

It's just hard to swallow the rebound headache arguement when I know how many pills I take, when I take them, and the pattern I take them. Point/counter point....

2006-10-02T21:07:00.000-07:00

Freeking/Tweaking in the ER...

I haven't been around much, I've been in a deep Low. Deep Low. Had to go the the ER twice in as many days for the head aches, and spent most of the rest of the time asleep. I did lurk some, but it was easier to just sleep.

I still had my Picc in in from my 32 hour blood draws and my CSS, and Chris wanted me to go in Saturday to the DR and have them pull it, but instead I slept. I just figured that since I'd be seeing my doctor, she could just pull the line. No big deal. I could have pulled the line myslef, but I didn't have the stuff to disolve the adheasive. I just have such thin skin that pulling the bandage and tape will tear my skin. You know the drill... So I went to my doc's for my headache checkup. I needed refills for my narcotics. She only wanted to focus on the imitrex. I tried to focus her on my special brand of headaches. I think I finally, FINALLY got through to her. My special brand of headaches are steroid withdrawal headaches. At least that is the working theory according to Dr. L.

He tells me that my headaches will all go away will go away once away once my tumor goes away.

The thing is... when will the tumor go away...

So anyway, I go to my doc's to have my Picc line removed, but she sort of freadked out, went "icky" sent me to the hospital. I have no idea why docs do this. It's a simply matter of just removing the tape and just pulling the line. And pulling. And pulling.... and pulling. Then putting pressure. Not a big deal. ...

Sigh.

Dropped off my precriptions, and headed off to the hospital. the nusrse in the ER wasn't sure what to do with me, since folks don't normally come to the ER for this. So she consulted with another nurse who said that they didn't do that. More calm waiting until I asl the next nuse, in a good-naturedly way what I was supposed to do, since it needed it come out. She said that I needed to produce paper work from OHSU or something. She waundered off, and I start feeling off... I should have known that I was starting to tweek.

I called Chris. I was amazed that I got right through to her... By this time I'm in the teeth of the freeker/tweeker.... they thought I was psycotic, until they got the paperwork from OHSU, and spoke with Chris... I know they thought I was psycotic because they moved me to my very own darkend waiting room where I would be more comfortable by myself. It didn't help that I was flailing my hand and shaking my head and pacing and muttering.... alteraining by hugging my purse to my body tightly (it's a poodle purse) crying, muttering, rocking, and shaking my head... The soda machine wouldn't take my dollar bills and I NEEDED water. I get DI when I freak/tweek...

I called Mike when I was back in my private waiting room. He said it was the worst freeker/tweeker episode I've had.

Anyway, I finally got back to a room, and finally stopped tweeking. The ER doc came to see me while I was coming down and he was looking over all the paperwork and chart notes they faxed from OHSU. He made an interesting comment... "So, it looks like you are heading to surgery here in October"

I continued to come down, to the point of near passing out. I came home and slept for a good five hours.

Low all weekend. Swing high for a few hours, not even enough time to feel normal if you will, then I freak/tweek. It just isn't fair. I don't know if I'm back Low, or if I'm going to be back High in the morning. I have no idea any more.

I'm so tired of this.

Some one tell me they freak/tweek, just so I don't feel so alone....

2006-09-30T08:56:00.000-07:00

Today's painting is party of my "Patio Junk" series. This one was done for a friend's house-warming

Yesterday was the first time in about a month that I've felt good enough to play any serious time in WoW. I spent some quality time in the Battle Grounds. I logged in this morning thinking to check how much honor I've generated for the Horde, but alas and alack, I must have been playing past midnight server time. I did get close to 320 HKs yesterday though.

I'm afraid that I'm going to have to admit to myself that I'm not going to be able to play much WoW. At least, not until I can figure out how to ration it. I haven't played much in the last month. Ok, make that "I haven't played at all" in the last month. No brutal trips to the ER in the last month for headaches that need duladin. Twice I've played WoW this week, twice I've needed to go to the ER.
Now, it could be a coincidence that I'm also in a Low. And I've had my tumor shut off 3 times this week. That right there is enough to be hard on me.

So, no playing WoW hardcore until I'm High again. I didn't have this problem for months, then all of a sudden I"m having it when I'm really Low. Not fair!

It might be something to do with the tumor screwing with my eyesight. I can play The Sims2 just fine, but the video requirements are vastly different. Then again, it could be the excitement. If I'm already Low, and I'm getting all worked up because some idiot can't figure out tactics, or some cowardly NE rogue and druid combo keep ganking me, that's gonna both generate cortisol and eat it. Eat more than I make, I think. Which is why I end up in trouble.

Great, so while I love my Sims, I guess I'm restricted to them when I'm on a Low. No world domination in any form when I'm Low.

Phooey.

***
right. I was in the ER again last night. Normally my husband "gets" it, but last night he wanted me to ride it out, or some such nonsense. This one was different that the usual ones. It felt like a bolt of lightning, and I ended up passing out on the kitchen floor. He made me wait 2 hours before taking me in to the ER. They did a CT and shot me full of duladin. We got home at 4 am. This morning, I woke up at 7:30 with a different kind of brutal headache. I don't think the pain is any less than it was last night, ok, it's an 8.5 as opposed to a 9.9, but I've gone to the ER with 8.5 headaches. But this is a manageable headache. This one I can drink a litter of water, two large cups of coffee and some overt the counter pain meds, and I"m good. I don't even have to dip into the prescription meds. At least, I don't think I'm going to have to. But that's a big difference between the two headaches, that have the same sort of pain scale. I'm going to have to figure out some way to get it through my sweet husband's thick skull, that when I need to go, I need to go. I know I'm Low, I just have to make it through this one Low. That's all I have to do, is make it through this Low... My surgery date is coming, it has to be.

2006-09-29T14:50:00.000-07:00

CSS done! 9-21-06

I’m On a RAGING High still. My cortisol is Sky High, still, which is good for traveling. Better than being crashed anyway. I was able sleep for three hours this morning, which is the most I've been able to sleep in one stretch since Sunday, even while I was sedated after the CSS. I'm still going 8,000 miles a minute, so please forgive me if this isn't making the most sense.

I just got back from OHSU a few hours ago. Normally it would be a 4 hour-ish drive, but since I had to go to South West Hospital in Vancouver for more tests it turned into a six hour drive. Ah well.

I got a call from Dr. Ludlum just before I got home, and he said that the results from the CSS were good. That the tumor has lateralized. I'm not exactly sure what that means, but he was pleased, so it's good for my case.

I will continue to do UFC tests while I'm still raging High; the more High numbers, the better for the board. Monday I will have a full MRI and MRV for the Neurologist, but Dr. L is convinced that my crushing headaches are caused by the Cushing’s, and the MRI will just add proof of the pituitary. Right now the head aches are so bad Oxycodone is just taking the edge off the worst of the head aches. The Neuro is pleased that I'm mixing the different prescription so that I'm not getting hooked on them.

So. Dr. L will be taking my case to the Tumor Board next week. Which means that I will probably be looking at having Pituitary surgery in a few weeks, according to Dr. L.

So, I just go home. Like I said, I'm still sky high, and I'll prolly be up for most of the night, yet again.

I'll let you know more, as I know things

Courage and Strength!

2006-09-29T14:24:00.000-07:00

Third time’s a Charm! 9/18/2006

Ok, I'm going to OHSU tomorrow for my PICC line, starting the 32-hour blood draws at Midnight, and checking in for my CSS at 6:30 am Wednesday.

Good thing I woke up BING! at 4:30 am High. Of course, not so good to be freaking/tweaking at the grocery store. I started twitching and tweaking just before I started checking out. and the muttering. Me, I was muttering, not other patrons, but I know I was getting some weird looks from my fellow shoppers. I'm just glad I got home before it got bad.

My son greeted me at the door with "oh good, you've got that crazy look in your eye, anything else in the trunk?"

10 minutes later I'm in the full teeth of the freeker/tweeker and I'm talking to Dr. L. He said to Page him the next time this happened to me, so I did. I know I wasn't very coherent, but possibly more importantly, HE knows I wasn't very coherent.

So, I just got back from a blood draw, nice to see if they caught anything during this latest freaker/tweaker episode. And as usual, it lasted just about 2 hours.

The following IM log was while I was in the teeth of the last freeker/tweeker episode. I was trying to tell my husband that I needed to go back to OHSU to get a PICC line, which he knew, because I’d just spoken with him about it on the phone. It didn’t matter, my brain didn’t work. Each key stroke was so very hard to make. Normally I type about 90 words a minute, not terribly accurate, but I’m a light touch. When I was trying to type that conversation. I was mashing each and every letter. I was crushing each letter, with all the force my body could muster

I say:

mike ike ike

I say:

get opc line tomrrow

Husband Says:

where?

I say:

ohoh oh

I say:

ohsususu

I say:

damn

Husband Says:

You driving down there?

I say:

yes

Husband Says:

today or tomorrow?

I say:

morrow orrwo orrw

Husband Says:

Have you called Tracy to see if you can stay with her?

I say:

nonononoono

Husband Says:

are you sure you are safe to drive

I say:

not sfe to do asny thingthing thing

Husband Says:

have spencer take you to the store then

I say:

just got back

I say:

back back

Husband Says:

oooh okay

I say:

this started ed ed whil I was thereerere

Husband Says:

ooo,

I say:

hes taking me to get t t bloddddd

Husband Says:

okay, good

I say:

att local laaabblablab

I say:

makke it it it stoptoptpppp

I say:

willlll walll wenn gettt backkkkkkkkkk

Husband Says:

Okay

At This point we left to get the blood work done…..

I say:

there is something exquisitely terrifying about not being in control of one's body

I say:

I started to tweak while I was at the grocery store.

I say:

I was praying that I was going to make it home before it really started

I say:

or at least, before it got bad.

Husband Says:

I am glad you made it home safe

I say:

I don't think any of what I typed made sense, did it?

Husband Says:

It did

I say:

I mean, while I was in the teeth of that ... episode

Husband Says:

I know

I say:

I couldn't make my fingers work right. I was pounding the keys, mashing them, smashing and crushing the keys

Husband Says:

I could tell it wasn't easy for you

I say:

I have no idea why I called you to tell you I was calling Dr. L.

I say:

Spud couldn't figure out why I was calling you and not Dr. L

I say:

for for some reason, it was vital that you knew i was calling him

Husband Says:

I understood

Husband Says:

Did you talk with him?

Husband Says:

or with his assistant

I say:

I'm glad someone understood

I say:

stood

I say:

I spoke with him.

I say:

he said it's time to get me cured

I say:

that I wouldn't have to do this much longer

I say:

something about either Lynne will call or I need to call Lynn to get the Picc line set up for tomorrow, and start the draws at 00:01 Wednesday...

I say:

00:01, 00:30, 04:00 and I need to be at the hospital at 6:30 am for admitting...

Husband Says:

Okay

Husband Says:

Getting thursday off isn't a problem. It is the company meeting that I wasn't planning on attending anyway

Husband Says:

I just need to be able to squeeze out Wednesday.

I say:

I'm tired

Husband Says:

I say:

I got up at 4:30

Husband Says:

Oh, I didn't know

I say:

yup, popped High

I say:

BING! I was awake

2006-09-29T14:22:00.000-07:00

Back to OHSU, trip #3

Well, Dr. L called me last night to go over last week. I'm always impressed with his dedication. He called me at around 5:30 pm, on a Friday night no less.

So, I failed the dex test. No big surprise there. But since my tumor shut off an hour or so after taking the first dose, he's not sure that I'll ever "pass: that test. We are going to give it one more go though.

I had more high UFC numbers while I was down there, as well as one high midnight cortisol. My ACTH was way out of range as well. But no good on the salivaries.

So. I'm headed back to OHSU for another full week's test. This time there will definitely be a CSS involved.

He thinks he has enough to take my case to the Board. But he's not 100% sure. Part of the problem with being cyclic is that it's so hard to catch the numbers consistently. Except for the UFCs being 3-4 times normal, the other numbers could be dismissed as "slightly elevated."

If you take a group of florid Cushies and a group of healthy folks and have them test the same way, you will get a range of numbers that over lap. The Healthy folks will have some high numbers and the Cushies will have some low numbers. Most of my numbers fall in the over lap range.

So, I'll be heading back to OHSU for the full week treatment again, on the first available time slot.

We talked about me turning into the freaker/tweaker princess. Chris had explained to him a little how I was, and I tried to hammer it home to him how aweful it is when I’m like that. It goes beyond being manic, it goes right into hypermania. Hyper-mania isn’t even a recognized word, but it is sure how I feel when I’m in the teeth of one of those episodes. He told me that I was going to hate him, but he doesn’t want me to make them stop, not yet anyway. He wants me to test, test, test. Because I typically have a mini crash right after one of these, the UFC won’t do much of a good test. So, I’ll need to go have blood work done. Because I don’t have a good grasp on reality while I’m in the middle of one of these episode, Spud has been directed to take me to the lab so they can do my blood draws.

I had originally wanted Spud to give me a big stiff drink. I showed him how to make a light and refreshing rum drink, but he wasn’t terribly impressed. Heh, not my Spudders. But Dr. L put the kibosh on that plan, since he wants me to test. I don’t’ want to test. I want to throw a world class temper tantrum at the thought of testing while one of those episodes, when all I want to do is make it stop.

The appointment with the neuro. Dr. Fosmire, I think went well. He’s not quite sure what to do with me, given my Cushing’s. He put me on Topomax for the headaches, and he’s ordered a full MRI & MRV test. At OHSU they just did an MRI of my Pit area, he wants to check to see if I have a problems with my arteries in the head. He thinks that the washing-machine in my head might be a blood vessel near my ear, but he couldn’t explain why it would switch sides of my head. He’s going with the “atypical-migraine” theory. At least until the films come back.

2006-09-29T14:19:00.000-07:00

Week at OHSU.. no CSS 9/8/06

I did NOT have the CSS like I thought I was going to, nor have I met Dr. D. There is a possibility that I will meet him tomorrow, but I'm not actually holding my breath. I don't know why I didn't have it after Dr. L said last Tuesday, and now I feel somewhat foolish for saying that I was going to have one.

I've had a great visit with a couple of Cushies who were in town! One of the husbands is a hoot and a half, and my husband and I had a good time geeking out with him at Lunch. But poor cushie-wife was in a Low while I was Sky High...

I got really good at drawing my blood for the 32 hour draws, and my dear husband was ever so thankful he only had to play messenger service, not actually do the blood draws.

One thing I figured out is to make up all the packets for the tests as soon as I got my orders and supplies. It was VERY annoying trying to dig out everything for the 4 am draw, especially since I'd made the kits ahead for earlier draws.

Hopefully I won't be doing another 32 hour test, but if I do, I'm prepared.

The other thing I learned was to bring an insulated no-drip coffee cup. Being from Seattle I only have about 8 or 10 of these things about the house, and it was so much easier for my hubby to just take the cup filled with ice to the ER than to try to worry about an ice bucket and random ice going around those really sharp corners up the hill to OHSU. I think next time I will bring small baggies to put the tubes in when they go inside the insulated coffee cup.

Tuesday I had lunch with a cured Cushie and her cousin, and I could feel myself spinning up faster and faster. I know that I must have appeared to be a speed freak, or a coke-head as fast as I was talking, and as tangential as I was. They are absolute dolls, and it was helpful for me to know that they had a darn good idea of what was happening.

So, I go up early for my 2:30 appointment at the clinic and I'm suddenly spun WAY out of control. Patty at the front desk wanted me to fill out the "why are you here" paper work, and I couldn't figure out what the heck I was there for. I couldn't think, I couldn't concentrate, and I think I wrote down something like "I'm here for Cushing’s but my brain won't work anymore, help" So I get back to the room, and my blood pressure is the highest it has ever been in my entire life, I'm crying, and I can't stop moving! I couldn't stop pacing, shaking my hands and head at the same time. I was a freaking out, and not having a good time at all. Chris had me do an immediate draw, but I had to have her help because I was so frenetic. I explained that I've been like this before. Or at least I tried to explain that.

Frenetic is the only word for how I felt for close to three terrible hours.

Chris had me draw my blood at 3, 4 and 5 o'clock. I'd done one at Noon, and then the regularly scheduled one at 8. I can only hope and pray that they caught something. Chris wanted to know if I've ever done that before, and yes, all the gods and goddesses help me, I've been that way before. I finally started to calm down a few minutes to 5, but I was still mighty spun High.

So, Wednesday, I started the Dex. Before I started, my back hurt so bad, I was pretty sure the crash was on its way. My husband and I decided that we would kill some time by taking a drive up to Mount Hood, but by the time we got to the Village of Government Camp, an hour or so after I took the first dose of Dex, I crashed as hard as I was afraid I was going to. For about 4 hours I was completely out of it, with a few dips back to lucidity. Or what I thought was lucidity. My brain would work, but it was too much effort to say more than a few words. I don't think I've ever sat still that long before, not moving a muscle.

He called Dr. L, but my symptoms were bad enough to need to go to the ER, but that I needed to be watched. Since I'm staying with my friend here, whose mom just happens to be a nurse, Mike makes the call to go to their house early. He had to half carry me to the Mom's bed, where I slept for several more hours.

Then Bing! I wake up! I'm alert and my entire body functions just like it is supposed to.

But, being on the Dex, I don't have the BRUTAL headaches that normally accompany such a crash. That was significant, all by its lonesome. Dr. L told my husband that the dex would make things better. Or make me feel better, anyway. I don't know if there is a difference there.

I was really afraid that I was going to crash as hard as I ended up doing. I knew that as High as I was, my Low would be that low. But the amazing thing is that I didn't have the headaches or the back flank pain I normally get when I crash. I know I said that before, but I wanted to repeat myself because it was so significant.

Since I've been on the Dex, I feel GREAT! I mean really wonderful. There have even been times where the washing-machine noise in my head has completely stopped! It's been amazing to have that noise shut off, even if it's only for a few hours at a time.

I don't know what to expect tomorrow when Chris shoots me full of that stuff to see if I suppress or not. I don't know if it is going to call the head-aches that the Dex has been able to put off. I just don't know.

But one thing I am going to do is ask for a prescription for Dex! It makes me feel... like a normal person. Like I've been able to strike a wonderful balance between that High and Low. These last couple of days have felt nothing like when I Swing up High from my Low, because I know what those feel like. These last couple of days I have felt like I think Normal is supposed to feel like (except the part where I have to get up at 1 AM to take the dex or the 4 am Potty trips.... I'm pretty sure that Normal doesn't include those

The last time I did the dex test, it didn't seem to have any affect on me. Nothing that I could detect anyway.

But oh mamma! What a difference this time! I feel absolutely great on it. I think partly because I was headed for a land-me-in-the-ER crash, and this time, while I did have an extended period of "extreme weakness" I haven't had the terrible headache that I normally do.

How terrible to have a normal headache. Sorry, but that's just odd to say that. To be like that.

After the Terrible High I was on Tuesday, this crash should have been just as bad, but since I've been on the Dex, no headache! No brutal back ache!

I wonder if I'll be able to talk them into giving me a prescription for it to take home.

It is wonderful to not live on peracets for half the time. Just wonderful.

Anyway, sorry for such a long post.

I prolly won't post again until Saturday. I'm still in Portland at my friend's place. Hopefully I'll be able to leave mid-afternoon. If it gets much later than 3 pm I'll have to stay another night because I cannot see in the dark. When you can't see in the dark, you don’t' get to drive in the dark.

2006-09-29T14:18:00.000-07:00

CSS Bound, but the question is when 8/30/2006

I met with Dr. L down in OHSU yesterday.

I have enough high UFCs, which DR. L says are the tough ones to get. I just need the high other numbers. I will be going down again for the full round of tests, since my last time there I was on a Low. Instead of going on their schedule, I'll be going on my schedule.

I'm not sure when my next High will hit. I've been on a terrible Low for over two weeks now, or at least I think it's been two weeks, I don't remember going on a good raging High in the last couple of weeks. I might, but my brain isn't working on all cylinders lately.

So, when I start heading High again, I need to call Dr. L that I'm coming down. I'll be doing the full week's work-up, including the 32-hour blood draws (every 4 hours), and a CSS with Dr. D.

"Cavernous sinus sampling (CSS) is highly accurate in distinguishing Cushing's disease from the ectopic adrenocorticotropin syndrome and in predicting intrapituitary tumor location." So basically, the CSS will tell the surgeons where to look for the tumor.

I met Jamie and Mars and Mars' mom for Lunch. It was really great to meet y'all, and you really helped me. I was such a basket case because, well, I was/am Low, and I think anyone would be more than a little emotional just before a big appointment.

But the key is to get High.

Anyway, I just wanted to give y'all a heads up.

Oh, and this morning I got a call from the lab for the local Endo (the one who put me on the Mediterranean diet because I need to lose weight. You remember him...) they did the tests on one of the UFCs WRONG. I have no idea what they did wrong, but there you go. I told the lab tech that I'd be in when I'm High, and not before. She was kind of taken aback, but there is no point in doing a UFC when I'm not High. At least not for that Endo...

Oh, after sleeping today until 11 am, then drinking two giant cups of strong coffee and falling asleep in the middle of drinking one of them... I slept for another couple of hours. Then I went to my husband's company picnic and rode my first ever Jet ski! It was a blast, and I went fast enough that I thought my glasses would fly off! It was so much fun, and I'm gonna do that as soon as I can! Of course, when I got back, the first thing I did was change into my jammies and bed where I napped a bit.

2006-09-29T14:15:00.000-07:00

OHSU, part II 8/28/2006

Tomorrow I go see Dr. L at OHSU again. A couple of weeks ago Lynne called me and told me that they want to see me. That I didn’t need to test any more. I guess when they tell you that it’s because they have all the data they need or want.

Part of me is so afraid that he’s calling me down to tell me that there is nothing they can do for me. That I don’t need to test any more because there is nothing wrong, at least nothing wrong that losing weight won’t fix. Oh sure, if only I could lose weight.

My husband said that I shouldn’t worry, that they wouldn’t have us drive 3 hours plus each way, just to tell me that there is nothing more to do. He figures that Dr. L would just dump me over the phone, like any bad relationship.

My son asks me every day when are they going to take this thing out of my head. And then he either punches me in the arm or bitch-slaps me, or attempts to anyway. That’s one way he can tell if I’m High or Low… if I’m High there is no way he’s going to count coup on me, no way. But when I’m Low on the other hand… well, he knows that I’m going to be moving in slow motion, tai chi slow… He’s got a long way to go before he counts enough coups on me, that’s for sure; I’m so far ahead on the coup count he will never catch up.

Last week was really rough for me. I was very, very Low, and my headaches were beyond reasonable. I was temped to go to the ER a couple of time, but it wasn’t until Friday night when I was throwing up that I went. I’d taken two phengren during the day, but by 8:00 pm I was throwing up, or at least I was giving it the old collage try. After the fifth dry heave session I gave up and had Mike drive me to the ER. I didn’t’ want to go, but I couldn’t’ stop heaving, and I couldn’t keep anything down.

We had to wait for over an hour in the waiting room, so many sic people on a Friday night. The doc thought it was another migraine, but this time I didn’t have the weakness, so I could explain exactly what the headache felt like. These headaches are nothing like migraine, but something more. I can only hope that when I finally do have the pit surgery they will go away.

Anyway, it took the nurse three tries before she was able to start the line. But she used lidocane, and besides, my head was in so much pain I don’t know that I would have even noticed the IV going in. Yeah, that bad. The doc wasn’t convinced that I’m not having “atypical migraines” so she wanted to try a combination of phenegren and benidryl. She said that was a sure fire way to knock out a migraine. Well, like I said, it wasn’t a migraine, and no it didn’t work. So she ordered a large dose of the narcotic for me. She said they were done pussy-footing around.

On previous trips to the ER they gave me the usual small amounts, then had to repeat several times before I was beyond the pain. The last time they gave me a double dose, but again, had to keep repeating the dosage of the medication. This time they just game me a large syringe of the good stuff, lowered my bed and put me on oxygen. I have no idea how long I was knocked out, but it worked. I didn’t have a head ache the next morning. You have no idea how wonderful it is to wake up without a headache. If you do know, you have my deepest sympathies.

Before she gave me the injection, we talked about pain management. She sent me home with a prescription for the highest dose percacet they make, a big bottle. She wants me to keep on top of the pain, and to not let it get away from me. So, now I don’t let the headaches get to far into the really bad range before I start managing the pain. No more “riding it out.” No more being the tough girl. She also had the radiology department make a CD of my CT scan from last week. We thought I was having a stroke or a TIA because the right side of my face was melting.

I see the neurologist in a couple of weeks, but tomorrow I go to OHSU to see Dr. L. Back to that worry.

And now for something completely different…

The chinchillas are my husband's pets, but I've been training them to get used to being handled, so they will willingly come to me in their cage, because they know I always have a treat for them. Tonight I decided that I'd start working on them to see going in their balls as a happy thing, so I put treats in them, and let it be their decision to go in the ball, or not. Usually my husband stuffs them in there so he can clean their cages, very high adrenaline stuff...

I was able to coax them into their balls and they had a good roll-around. Now I have these basketball sized balls roaming freely around my house. One of the chinchillas is really adventuresome, while the other got himself stuck between some pillows and boy shoes...Chilly got out of his ball, and it didn't take much effort to catch him. Spud, my son, scared him under my Chase lounge then I had him turn on the light, and I got one of the millet sprays to try to coax in from under it. Instead, he just crawled up between my arms as I was kneeled beside the chase

Chilly let me pick him up without any fight or struggle. He wasn't interested in the millet, he just wanted me. He didn't struggle at all while we walked to the cage, all the while I was telling him what a good boy he was. Then he stretched out on one of the platforms, like they do when they are hot.

2006-09-29T14:14:00.000-07:00

Weekly check-in 8-25-2006

I’m still super low but I'm finally starting to swing back up. I'm yawning my head off and I didn't sleep too well, kept waking up every couple of hours.

Tuesday can't come soon enough, I have an appointment with Dr. L in the afternoon. I'm super nervous, I'm so very afraid that they are calling me down to tell me that there is nothing wrong with me, that I'm just fat and lazy. My husband tells me that if that was just the case that they would just call me to dump me over the phone. I was just going to take the train down from Seattle, but Husband nixed that--he wants to go with me to make sure that they understand how worse I've gotten. My Highs are higher and my Lows are lower. Someone let me off this scary ride, it isn't fun!

I was concerned that I'd still be really low next week for my trip to OHSU but now it's looking like I'll have swung High in time for them to see me as a lunatic.

My son is so funny. Everyday when he gets home from work he has to check where I am in my cycle. I know he gets a kick out of rough-housing with me, and counting coup on each other is one of our favorite games. when I'm High he rarely gets in a touch, but when I'm low it's effortless for him I know he's really worried about me, but he hides it well.

2006-09-29T14:13:00.000-07:00

Thoughts 8-24-2006

How terrible it is to doubt one's self. I know that for a long time I was told that there wasn't anything wrong with me that losing weight wouldn't cure. I was seeing one idiot doctor that thought all my troubles were because I was a hypochondriac, nothing more. I suddenly developed insomnia, and was sent to therapy because people don't just "suddenly develop insomnia." It had to be stress. After years of feeling exhausted when I would wake up, I finally got sent to a sleep clinic where low and behold, I had really bad sleep apnea, not something that could be treated with therapy.

The point is to keep pushing.

As for the cycles, one way to think about it is that your pituitary gland is like the master thermostat for your hormones. When it doesn't function right, it might flood the system one day and starve it the next day. I know for a fact that my cortisol levels do fluctuate, I went from 299 to 61 cortisol levels in 3 days, and probably dropped lower because I didn't test after the 61 level day.

Some people cycle for very long periods, months at a time where they are in different phases, while other people cycle much shorter, almost like a light switch flicking off and on. These cycles make it much more difficult to catch a High, especially if we haven't figured out how our system reacts.

And I don't think it's all that rare, just rarely diagnosed. Because one of the main symptoms of Cushing's is obesity, we are dismissed and fat and lazy.

Courage and Strength!

2006-09-29T14:08:00.000-07:00

Restless legs 8-21-2006 at 05:07 PM

I've had restless legs all my life, so does my mom. I've found that if I eat LOTS of broccoli it seems to help. Unfortunately, not even I can eat 8 servings of broccoli a day/night. I take extra folic acid supplements and that seems to help. My mother read an article in Prevention magazine about 800 years ago and they suggested extra folic acid as a possible treatment/cure.

My entire bed gets destroyed when I sleep, On the nights I don't/can't sleep, I'm absolutely astounded that when my husband get up, he can just smooth down the covers on his side of the bed, and of course, mine hasn't been touched. When I sleep alone in a bed, everybody's side gets messed up!

I've been taking Mirapex for about 3 years now and it really makes a huge difference in my restless legs. The difference is in getting to sleep, or being miserable until I drop from exhaustion. You see, for me, when it's bad, it isn't a case of wiggly legs, but flailing about like a woman possessed by demons. I'm sure I'd have been burned at the stake!

When I'm feeling compelled to audition for the Rockets, I find it's just easier to get up and high step round the house until I can't move another muscle. (Usually only when I run out of the Mirapex.) If I lie on my tummy, I just do flutter kicks, like I'm swimming, then my husband kicks me out of bed. Not really, but I’m sure he wants to kick me out on night like that. Instead, I take pity on the poor man, and go wiggle and vibrate in the kitchen until I’m ready to drop.

Someone suggested heavy blankets to keep one's legs quite... what torture that would be for me! My ex-husband would get fed up with me and my legs and would try to physically restrain me... what torture.

As far as I know, RLS and panic attacks have nothing to do with each other. To give you an idea of the difference between the two, consider these the following:

RLS is sort of like that guy who sits next to you with his leg wiggly, and just won't stop wiggling it. Bouncing that knee, like there was an imaginary baby being entertained. Wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, and wiggle. You kind of want to stab him with your pen, but it's nothing serious...

Panic attacks, on the other hand... AHHHHHHHH!!!!!!!!!!!!! Impending DOOOOOMMMMMM and AHHHHHHHH!!!! Impending DOOOOOMMMMMM!!!!!!! Impending DOOOOOMMMMMM!! and AHHHHHHHH!!!!! KIDNAPPERS!!!!!!!! and AHHHHHHHH!!!!!!! Impending DOOOOOMMMMMM!!!!!! and AHHHHHHHH!!!! SPIDERS IN MY SHOE!!!!!!!!! and AHHHHHHHH!!!!!!!!!!!!! and AHHHHHHHH!!!! MISSING BABIES!!!!!!!!! and Impending DOOOOOMMMMMM!!!!!!!!!! and AHHHHHHHH!!!!!! DEATH !!!!!!! and AHHHHHHHH!!!!! Impending DOOOOOMMMMMM!!!!!!!! and LOOKOUT!!!! CAR CRASH!!!!!!!!!! and AHHHHHHHH!!!!! SPIDERS!!!! Impending DOOOOOMMMMMM!!!! and AHHHHHHHH!!!!! WATCH OUT!!!!!!!! and AHHHHHHHH!!!!!!! DOOOOOMMMMMM!!!!! and AHHHHHHHH!!!!!! Impending DOOOOOMMMMMM!!!!!!! And DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!!

But that's probably just me.

2006-09-29T14:07:00.000-07:00

wacky weight loss 8-21-2006

LMAO

Ok, I have to laugh, really really hard. I had the entire fill removed from my band, because of the nausea I've been fighting, so I don't have the extra protection from over-eating. I've been on a rip-roaring High and so I expected to be gaining weight. I also have been drinking Rum and light fruit beverages, because I wanna. (There is some evidence that alcohol reduces the amount of free cortisol in the bloodstream) I've also been eating ice cream and pasta. Yes, that's right, I've been eating pasta this week! Pasta and bread, everyday! (Well, almost every day)

The new Endo I saw for my Cushing's told me that I need to lose weight (you think?), and he's going to help me do it. He completely glossed over me having WLS... Anyway, he put me on the Mediterranean Diet, lots of pasta and grains, very low protein.

I'm down 5 pound this week.

I go back to Portland next week, hopefully they will schedule surgery to remove the tumor.

2006-09-29T14:03:00.000-07:00

crazy gardener lady 8-20-2006

Highs and Lows are so personal, and some of us find our Highs and Lows merge into one weird feeling. I'm lately finding Highs and Lows crossing over into each other.

Right now I'm on an insane High. Wednesday I crashed hard and ended up in the ER with "profound weakness." Today I was doing yard work like a crazy woman, like a woman possessed. Moved one of my compost bins, started to pressure wash the back of the house but the Husband took over because I was crying because I'm ... possessed. I have no idea why I'm driven to do yard work. I mean DRIVEN to do yard work when I'm on a High. I just put down two big bags of beauty bark in the back-yard, moved the compost, spent an hour killing blackberries, raking ... Mike gets mad because I keep over doing it. Well, mad isn't the right word, concerned I think more. I explained to him that I don't know how to not over do. I don't know when to stop. I don't know when to stop because it changes from day to day, hour to hour.

Sorry, I'm rambling again. I'm the amazing motor mouth, chatter chatter chatter.

It's like that credit card commercial, where the guy has dug himself into deep deep debt, and he finally says "somebody please help me."

I haven't figured out why I don't do this in the house. Clean the inside of the house, empty drawers and cupboards and closets. I don't know why I don't turn this energy inside. I don't know why I don't use this energy to pain and refinish furniture or texture walls or retile my bathroom or my kitchen.

2006-09-29T14:00:00.000-07:00

Mediterranean Diet 08-15-2006

Ok, I saw a new local Endocrinologist yesterday, mainly because I needed some local support, someone to locally help me interpret lab results and the like.

I also wanted to see if he could help me come up with an action plan so I don't end up in the ER any more because I crash so Low.

Well, he ordered yet more UFC tests because he didn't believe the other test results because they are too high, and I don't really "look Cushing's." Cushing's is a biomedical condition. No one says you don't have high blood pressure because you don't "look like you have high-blood-pressure..." And no plan of action to keep me out of the ER either...

ANYWAY...

He decided that I need to lose weight (ya' think??? ) So, he wants me to do the Mediterranean Diet. I suppose that would be ok, but it seems to be very high in Carbs, which as a Bandster, I have problems with on several levels, not the least being difficulty eating them . But it calls for drinking wine, but I don't drink wine , especially red wine, I just have never been able to develop the taste for it.

But I thought I'd share, since it sure gave me a laugh. Ok, so yesterday it was more hysterical laughter, but laughter still...

2006-09-29T13:59:00.000-07:00

World Domination! 08-15-2006

I'm High again
I just mowed the front yard
and weeded part of my rock garden
and watered the rock garden
and cleaned the rust off the 3 different types of hoes
and cleaned the rust off the spade and the fork
and cleaned the fern
and mulched two flower beds
and watered the lilacs...
and two days ago a trip up from the basement needed a rest in-between
all last week I was weak and tired, could hardly do anything but sleep
I still don't feel "strong" like I will later in the week
if only I didn't have theses lows, can you imagine how much I could get accomplished?
World domination!

2006-09-29T13:58:00.000-07:00

A memorial weekend 08-14-2006

Well, this weekend I spent with my mother-in-law, while she took care of some things for her best friend who recently died after a protracted illness. Every year, my MIL and her friend went to this charity high-tea out in Kelso, WA. The two charities support families in need, one is a family homeless shelter and the other provides new school supplies to kids in need.

The weather was lovely, but since we are having one of the driest summers on record (the next dry one was in 1960) It's been a lovely summer, but man I miss the rain!

Anyway, we went to the second sitting for the tea, which is the one that they always went too. I know it was hard for my MIL, especially since she brought several tea things to give to the Tea Lady.

We had several things that she needed to do. The next day we were going to go to their church, but we didn't sleep well, so we didn't go. She'd neglected to tell me that that was part of the plan, so I wasn't prepared. Pagans don't really attend church...my in-laws are Lutherans, but I've never been to a Lutheran service. Oh well. I didn't pack any "church" clothes...

So, we slept in, and went to breakfast at this cute little place, with ginormous portions. Since I'm unfilled I had heavenly French toast! ok, I had 1/2 piece of French toast and some bacon, but man, have I missed French toast ! We met the friend's son and his family for breakfast. It was pretty funny, I thought we were going to be eating with Church ladies, but my MIL headed straight for the table with the tough burly biker-looking dude sitting by himself. Massive tattoos on his biceps framed by his black tee-shirt, in the wife-beater style... Not the usual "type" of person my in-laws associate with! Nothing "proper" about him, but he was the nicest guy. I took pity on their 11 year-old grandson. The poor kid had to try to entertain himself quietly with a spoon and paper-napkin. I gave him my PDA to play with. I just couldn't sit there and let that kid be miserable... I know how it was with my son... Ah yes, I made a friend right then!

We spent a good chunk of the afternoon going to boxes and bags of the Friends things. Looking through the remains of a long life. The life of a stranger.

2006-09-29T13:57:00.000-07:00

calories in/out debate 08-11-2006

I know that lots of people are convinced that weight loss is about calories in/out and I know that that holds true for the majority of people. But I have to wonder about us Cushies. I don't think that it is a matter that we have a really slow metabolism.

But the thing is, it doesn't matter how much I eat or don't eat. The calorie in/out would hold true if I gained massive amounts of weight on 1200-1500, when I couldn't lose on 1200, 1000, 800 or less than 700 calories. (I did gain 10 pounds in a week at 1000 calories, but that was one week.) It is entirely possible that my weight gain/loss has been only water, which is fine on one level because it lessens my edema problems. But not fine for why I had WLS. If my metabolism was truly that slow, I wouldn't metabolize medications as fast as I do, and I would gain constantly.

But as for low calories, I just don't see how other people can function on sub 700 long term. I will give you that it is entirely probable that I entered into a deep Low during the month I was too restricted. But I think the lowered calorie intake made the Low worse.

2006-09-29T13:55:00.000-07:00

AI part II 08-09-2006

Well, I feel like I've been put through the wringer.

For a couple of weeks I was on a heck of a High. Or at least it feels that way. Sunday I was raging around for no good reason, felt like a bear someone was poking with a sharp stick. I've learned that a crash soon follows these rages, but crap! Monday I couldn't sleep and got up really early on Tuesday but felt really tired in the afternoon. I took a nap, and new a crash was eminent.

Oh man, but I sure wasn't expecting the crash I had. I rarely remember having any dreams when I nap, but yesterday was way out. New I was introuble in the dream. Got freezing cold, terrible drunk feeling with the spins and everything. I woke up and dry heaved for a while, terrible itching. But the worst was having the right side of my face... melt, along with slurring speach.

I had my son call Chris, and my husband. Chris had my son drive me to the ER and to not wait for my husband to get home. So my boys took me, and I waited in the ER for almost an hour to get a bed, and I waited almost 2 hours before I was able to get something to help with the nausia and the seering headache and flank pain.

They did a CT of my head, and it showed no problems. All in all I spent a almost 6 hours in the ER.

I placed several calls to various doctos, but no one as called me back yet.

I sure wish I knew what was "urgent" and what is just bad.

So, I've had three of thse in the last while. Two trips to the ER in the last four weeks. This one was worse than the last one.

I've been High for the last couple of weeks, and except for the bad parts, like the rage and anxiaty and general pissiness, I prefer the Highs to the Lows. I think being High for so long made the crash all that harder because I was hit bottom so hard.

2006-09-29T13:53:00.000-07:00

Boozin' boozin, just you and I! 08-09-2006

Oh! We all are bloody-well boozin! (Chorus from my favorite Victorian Drinking song.)

One of my weird personal observations is that when I'm in a High I want alcoholic beverages. I mean, I almost crave them.

I'm not now, nor have I ever been an alcoholic, but I'm certainly predisposed to being one. My Great-grandfather was, my grandfather, my dad and 3 out of my 4 sibs are alcoholics. Because I've always know of my family history, and the possibility of being predisposed, I've always been very careful with my alcohol use.

When I'm on a High, alcohol has little if any effect one me that I can feel. No Buzz for me, no tipsy feeling no nothing. As an experiment I'm gonna see if I can find some of those personal use alcohol tester that I've been told they sell at continence stores. When I'm in a Low, I don't have any desire to drink.

I just thought this was very interesting.

Drinking Alcohol May Correct Stress-Hormone Malfunction http://pn.psychiatryonline.org/cgi/c...ull/36/12/20-a
A new study has linked an abnormal response in stress hormones to alcoholism and proposes that for a person with alcoholism, drinking alcohol may actually "correct" the abnormality.

The reward of a euphoric response to alcohol that most people experience is known to be related to the release of stress hormones. A new study suggests that people who are alcoholic may actually drink alcohol for its apparent ability to help correct a dysfunctional stress response.

The study reported two significant findings: First, some patients recovering from alcoholism, even after prolonged abstinence from alcohol, continue to have a significantly suppressed stress-response system. Secondly, their systems appear to be hypersensitive to serotonin. The study is described in the May issue of Alcoholism: Clinical and Experimental Research.

According to the authors, some patients who are alcoholic respond differently from nonalcoholic patients to stressful situations that involve the brain’s serotonin system and may drink alcohol under stressful conditions in order to "correct" their brain’s response to the stress.

Subjects recovering from alcoholism were given fenfluramine to cause an acute increase in serotonin activity. This was then suspected of causing increased activity in the subjects’ limbic-hypothalamic-pituitary-adrenal (LHPA) axis—the system of interconnected brain structures that becomes especially active in response to stress—leading to secretion of the stress hormone cortisol by the adrenal glands.

"Our major finding," said researcher Robert M. Anthenelli, M.D., "was that alcoholics who had been abstinent for an average of more than four months had a twofold greater cortisol response compared with nonalcoholics following administration of fenfluramine." Anthenelli, the study’s lead author, is an associate professor of psychiatry at the University of Cincinnati College of Medicine and director of substance dependence programs at the Cincinnati Veterans Affairs Medical Center.

He said the finding is surprising in that it contrasts with most other published reports indicating a blunted or unchanged stress response in patients who are alcoholic, with shorter periods of abstinence.

"We also found that the stress-hormone response in recovering alcoholics did not return to baseline levels as quickly as it did in age- and race-matched nonalcoholic control subjects. In other words, it appears that some of our recovering alcoholics had difficulty turning off the fenfluramine-induced stress response."

While the authors did not directly speculate on the implications of the findings, other researchers have. "It is reasonable to speculate," said Stephen Woods, M.D., professor of psychiatry and of neuroscience at the University of Cincinnati, "that there are physical consequences of this." Whether the change in the LHPA axis is the result of prior brain differences or is a consequence of former consumption of large amounts of alcohol isn’t yet known, Woods said in a press release issued by the National Institute on Alcoholism and Alcohol Abuse.

"An interesting clue, however," Woods suggested, "is that the elevated cortisol response is reminiscent of what has been observed in individuals who have never before experienced alcohol, but who are considered at high risk for developing alcoholism. One possibility, therefore, is that the prolonged elevation of cortisol following fenfluramine is characteristic of certain alcoholism-prone individuals and can be observed either before they ever drink or after a prolonged period of abstinence."

"We propose," said Anthenelli, "that this may represent a trait marker of alcoholism . . .that could distinguish subgroups of alcohol-dependent people or those who have a predisposition for alcoholism from people who do not."

Woods thinks that the findings may suggest that the reason some people drink more alcohol and eventually become alcoholic "is that a ‘defect’ in their LHPA response to serotonin is ‘corrected’ by alcohol. If this were the case, then alcohol would have a greater degree of reward value for those individuals than for people who do not have the same ‘defect.’ "

"Stress Hormone Dysregulation at Rest and After Serotonergic Stimulation Among Alcohol-Dependent Men With Extended Abstinence and Controls" can be accessed on the Web at www.alcoholism-cer.com by entering "Anthenelli" under "Author." {blacksquare}

--------------------
Oregon 5-day work up 4/24
UFC 214 on 6/21
UFC 299 on 7/21
UFC 292 on 7/22

Cyclical Cushing's

If it walks like a platypus, talks like a platypus, looks like a platypus, it must duck because it has a duck bill and besides, platypus are too rare around these parts....

UFCs crucial
For Tyranny of the Jug
Pee into the hat

2006-09-29T13:49:00.000-07:00

ramblin' ramblin' rambin' 08-05-2006

Nothing special planned for the weekend. I was going to spend some quality time with WoW, World of Warcraft, if everything co-operates. Hope to get a movie in on Sunday afternoon.

I spent about and hour this afternoon trimming bushes and waging war against the blackberries. Oh the Blackberries! Nothing says "abandoned property" like blackberries! Sure the English Ivy will take over almost as fast, but some how it looks genteel as opposed to abandoned and unloved. But I topped off the giant yard waste bin (not composing because of the blackberries) and a medium sized garbage can (again, not composting because of the blackberries.)

It's almost 3 am and I'm wide awake. I've been up since 7am and good grief. Kind of figures that the day I take a break from testing I'd be up all night. I don't care! I'm making a break from the Tyranny of the Jug!

Still no word from Chris at OHSU, I had called Thursday morning and left a message, I had hoped that she would call, but no such luck. *sigh*

I heard back from my niece tonight. I strongly suspect that she too has Cushing's. She saw her PCP, and he send her to an Endo requesting RUSH testing. She actually saw the Endo the next day. Doesn't look good, Her hump isn't humpy enough, she's not weak enough, her stria isn't red or wide enough, but he did order some blood tests and a UFC.

My son came home bragging that he'd gotten to see a Pirate rock band at the local mall. Every Friday they have live music on the stage, as well as several other nights, and tonight they had a group called Captain Bogg & Salty Spud and his girlfriend BabyGirl (I"m working on a new nickname for her, this week I'm calling her BabyGirl) bought all their CDs and had a really great time. Apparently the group had a FisherPrice, My First Mosh Pit... When I ripped the CDs to my hard drive it came up as Children's genre, so there were lots of kids in the audience. So there you go.

I'm detecting a theme to his latest gifts to me.. Pirate CD (but not pirated one ), pirate playing cards, pirate rubber ducky, and my very own tooba pirates... Well, I'll be well prepared for International Talk Like a Pirate Day, Sept 19th. (I'll be having my 3rd annual Pirate party... on 9/16, since ya can hardly have a rip-roaring Pirate party on a Tuesday Depending on how I feel tomorrow I might see if I can get my husband to take me to the SeaFair Pirates landing. Yeah, like I can handle the crowds... LOL!

2006-09-29T13:47:00.000-07:00

Ah-hah, mystery explained 08-02-2006

Q: I'm just wondering if we know why we don't lose weight. Why we can't lose weight? As you know, I spent a month at less than 700 calories a day, an managed an impressive 1.5 pounds lost. Which I promptly gained when I went to 1000 calories a day. Can someone point me to some links? (and also hopefully break it down so I can understand it when I'm in a brain fog.)

Is it true that exercise increases cortisol levels or production?

This is the information I got from my Cushing's board http://cushings.invisionzone.com/index.php?showtopic=17111&st=0&gopid=145400&#entry 145400 (might need to register to view the thread.) LynneC is one of the long time Cushing's board member, and a great all-around resource.
Quote:
Originally Posted by LynneC
The basic thing is that our bodies are designed to compensate when we're under stress. Our bodies haven't changed much since our caveman days. So when our bodies are under stress, like from a famine, the cortisol response kicks in and makes sure we have plenty of energy stores (fat) available to help us survive, just in case we need an energy boost while being chased by a sabertooth tiger. With Cushing's, of course, we have a source of stress hormone operating independently of our circumstances and it doesn't shut off. Our entire digestive and metobolic system changes. Food, any food, is sent to our fat stores. Around our trunk/upper body is the most efficient place to store it for "easy access". We then receive all our energy from the breakdown of muscle. If not enough food is consumed for our needs, then the body will turn the muscle itself into fat.

Some people have been able to lose weight with Cushing's. It may have to do with intermittant cortisol secretion, so their bodies get a break once in awhile. Severe dieting (like a 700 cal. program) can actually make things worse. For example, anorexics have high cortisol levels. If their cortisol didn't kick in, they would die much sooner from starvation.

Wow, I don't know about anyone else, but this has been a light bulb moment for me.

Ah-HAH This makes sense.

This headache that I've got that WILL NOT go away, started in Nov, the month I was *super* restricted with my band. This is also when my symptoms started to be real. I've always had the symptoms, always had these stretches where I would suddenly gain weight but otherwise feel pretty good, vs. long stretches where I felt practically immobilized with Fibro...

2006-09-29T13:41:00.000-07:00

Holy meth-addict Batman! 08-01-2006

I got my results from Chris yesterday, before I became a raving lunatic.

7/21 299
7/22 292
7/23 171
7/25 61.2

So, I'm not surprised that I felt so horrible when I dropped. I had a drop of 230 in a matter of days. I have no doubt that I dropped further than that.

I am still working out when I'm High. I thought I had figured this out perfectly, but as it turns out, I apparently get really 'roid ragy *just* after I peaked.

Previously I've been testing just one day, when I felt I was at my highest, when I was at my most crazy pissed-off lunatic. If this last testing phase holds true, where I tested for several days starting when I thought I was entering my High, then I should be testing before I think I'm High, I should start testing when I'm swinging High.

It might be that when you think you are swinging you are actually higher, and when you think you are high, you are dealing with the flood of cortisol in your system.

Just a thought anyway. But I also have heard other cyclical Cushies say that the thought they were low when they were high.

I really think the only way to know when you are where is to test. If nothing else, it gives you a baseline so that you know that when you feel X, your numbers are probably within Y range.

Now, as to being a lunatic yesterday. Holy meth-addict Batman!

Yesterday morning I still felt really bad, nauseous, back hurting like a mutha-fucker. I spent all weekend sucking down phenegrin and vicodin. Well, not so much the pain killers, just power through that pain, but then it got the point of am I nauseous because of the pain, or am in pain from the nausea? That didn't make any sense, how could one be in pain from the nausea, so I figured the pain was making things worse. Anyway. I felt like dog-pooh all weekend. Friday was really bad because I felt like I had my HIGH and Low both together. I felt so bad no WoW for me!

I did manage some PvP in the battle grounds, I lost my Blood Guard rank with Palan, and I really need to work on getting my tier 1 Beastmaster kit. But I ran some lowbies through some dungeons to help them with their quests. Mike was amazed that I was able to one-shot just about everything in the Wailing Caverns. I really want to both work on my Beastmaster Kit, but I also want to drag Karada up so we can do instances together again, where we both will get benefit.

Ohh, nothing like a little ADD thrown in the mix! Okay, back to yesterday. ... I felt crappy all morning, then about noon I started to feel better, then by 1 or 2 in the afternoon I felt GREAT! I mean, really, really good. I had lots of energy, but by 3... I started feeling like I had almost too much energy, if that was possible. Like I'd had 2 or 3 Red Bulls one right after another.

Time seemed to dilate, like I was moving faster than everything around me. I tried to type out something on my Cushing's board, to see if anyone had similar symptoms, but I couldn't type, my fingers were moving too fast, and it was just ... wrong. I had way more energy than I should have.

I went for a super fast walk around the block, I was almost running, but power walking for sure. Then I started in on the yard work again. Then I made my son get the pressure washer out and move it so I could pressure wash the front and side walk ways. I was completely out of control.
Quote:
Oh my, my!

I was incredibly manic and completely out of control. I did a ridiculous amount of yard work. I was completely out of control. I was frantic and frenetic. I called Chris, and she told me to test. (of course she would tell me that.) I just couldn't work that out on my own. I should have been able to but I couldn't. I was standing there just vibrating, and flailing my right hand, shaking it as hard as I could.

I eventually got so sweaty, I had to take off my shoes, then when I sat down, I felt like I had a strong electric current running through my mouth. Then I crashed for about two hours, woke up stiff and hardly able to move.

I feel more normal. At least, normal for me.

It is like I didn't swing High, I was just suddenly and completely HIGH. It was terrifyingly High.

I crashed out for a couple of hours, until about 8pm, and then was up for several more hours. I went to bed about 1:am, but I was still buzzing. I didn’t want to get up because I was enjoying snuggling with Mike. I missed him while I was sleeping outside.

2006-09-29T13:38:00.000-07:00

no help for the wicked 07-29-2006

Wow, so much has changed since I originally started the thread "no help for the wicked." It was 3 months before I was banded, and I was really struggling with my asthma. I mean, really struggling. Death looked like a real possibility.

I really thought that by now I would have lost if not all my excess weight, I would have lost a big whack of it. I was sure that I would be a size 16 by now, not still 22/24. But that is not in the cards for me. I still struggle with this.

But I suppose I should have clued into the "sudden weight gain" since no one else seems to experience that particular "joy." I've since learned that it's one of the hallmarks of Cushing's, and I've had to come to terms with learning that my journey is not the typical journey.

Someone on a recent thread was commenting on how pissed they were because someone told them that by having WLS they were not doing it "right" that they were not doing it the old fashioned way. That somehow having the band was cheating and so any loss would be less valuable.

I personally think that WLS is the easy way, because it makes it makes it possible for so many people to actually lose weight and keep it off for possibly the first time in their entire lives. I have absolutely no problem with this being the easy way, because I have no need for people to suffer. I see little value in adding suffering and grief to life. It's hard enough without looking for extra hardness to add.

2006-09-29T13:37:00.000-07:00

performance enhancing drugs... 07-27-2006

It seems like the only sports stories I hear about are the scandals involving professional athletes and steroids and/or performance enhancing drugs. It got me thinking. How can I personally relate these stories with my life?

Imagine if you will, that I am a world famous athlete. I’m one of the world’s top baseball players. Never mind that in reality I’m recently 44, 5’4” with frizzy hair and I’m shaped like a baseball… Why, even my face is shaped like a baseball… Anyway, someone gets suspicious… my bat’s on fire, and I hit for the cycle almost every game! Hey battah-battah!

My batting average gets better and better, until finally, the baseball commission finally has no option, they must test me for steroids and performance enhancing drugs. Bad news for me! The blood tests come back and my testosterone comes back “freakishly high” and I’m clearly on steroids… They are even starting to affect my life off-field, getting into fights…

2006-09-29T13:36:00.000-07:00

Dr. Bruce Banner... Cushing's patient? 07-27-2006

Okay, we all know that Dr. Bruce Banner got dosed with too much Gamma Radiation, which turns him into The Incredible Hulk.

So...

I'm thinking that it was his Pit that got especially zapped. His ACTH has to be affected, since he turns green. (I'm not sure where the ACTH is produced, so I could be wrong.)

"You wouldn't like me when I’m angry" pretty much sums me up when I'm High...

So is he cyclical with *really* short cycles, or full blown Cushing's?

I edited this because I got his name wrong! Good think I married a Geek-boy-husband because he was able to straighten me out!

Also, someone pointed out to me that The Hulk is green not because of t he extra ACTH, but green from nausea. Some folks have nausea with their High phase... And most people agree, the Hulk is probably definitely cyclical...

2006-09-29T13:34:00.000-07:00

benign breast mass Date Posted: 07-27-2006 at 02:59 PM

Well, the mass in my breast is benign. The whole process was so painful, and I ended up with tears streaming down my face as she mashed my breast in the machine.

I don't know if there will be a bruise, but I'll be surprised if there isn't one.

It’s funny, in an odd sort of way, but I’m surprised at my reaction to this whole “you have a mass in your breast” business. Denial is such a protective reaction to news. Shock is one of our body protects it to keep us from bursting into flames from the stress. I suppose that being on a deep Low helped as well. Although the Low made the whole breast squashing ritual all the more painful.

2006-09-29T13:33:00.000-07:00

Friday's UFC, a personal best 07-26-2006

I've been on a dewsy of a High since about Thursday, I've been testing back-to-back since Friday night. (ok, I didn't test from Midnight last night to 10:30 this morning because the lab I use was out of UFC jugs.)

Chris called me this afternoon, which I missed her first two calls. I was in the backyard sleeping under the maples. She called again this evening, and gave me Friday's results ....

Friday I hit 299. The Gods only know what I hit yesterday and today, when I feel like I was much Higher than Friday. I should have those results probably on Thursday... I don't even want to think about what happens on Thursday.

Anyway, Chris said they want me to come back down to OHSU on my next High cycle. So, that should be in two weeks, give or take.

I expect to crash in the next day or so, if my pattern holds true.

2006-09-29T13:32:00.000-07:00

temper temper : 07-25-2006

So, I'm feeling really High, which doesn't help.

I woke up late, not that I have anything to do with my life, but I wanted to get up before it got hot.
Husband refuses to sleep with me, so I'm generally pissed off about that. He doesn't want to sleep outside with me, and inside is ... well there is no way I can sleep in the house its so hot. He said there was no room. IT'S THE FREAKING BACK-YARD! HOW MUCH ROOM DOES HE THINK HE NEEDS????

So. I got up late. Took my two full UFC jugs from yesterday into the lab so I could have my blood drawn. They always want it fasting, so no coffee yet for me. Because it's a fasting-draw, it means the my morning is disrupted, because I don’t' have my coffee. It's the ritual, more than the caffeine, I think.

Get to the lab, they draw my blood. I've been doing back-to-back UFCs since Friday, but they ran out of the containers because I'm pee-ing my brains out. (Is it normal to pee 5000 ccs a day? I think not.) Anyway, this morning they got a shipment of supplies, and the containers they got for the UFCs are 3 ounces. THREE OUNCE BOTTLES FOR ME! Ok, that was actually funny.

Did I mention that I got a phone call about 5 minutes after I got up? It was from the breast cancer center. They found a large mass in my right breast.

Obviously, 3-oz bottles are not going to cut it for the pee machine I've turned into, so the other lab-tech drives over to their main office to get the right ones for me. While she's gone, I decide I'll head over to the grocery store to get a latte. I bought some small grocery items, while I was there, some specialty coffee stuff. I got some cash back so could go to the movies to beat the heat.

I go back and get my correct UFC containers, and it hits me that the total at the grocery store was a little excessive, so I double checked my receipt. They over charged me for the maple sugar, by $4! So, I drive back to the grocery store and get that straightened out. I leave the store, and the sugar on the counter. Then I realize I've lost the $20 bucks I got earlier, and the guy comes out with my sugar.

So, by this time, I'm cranky, my head is splitting, my kidneys hurt, and I've just realized I've lost a $20 bill. Oh, and I have to pee. I go to call my husband, wanting him to say something sweet to me, and discover he's forgotten to pay the cell phone bill. In my frustration, I had a temper tantrum, and threw the phone onto the passenger seat, which promptly bounced against the window.... That was the best part of the morning. That I'd rolled up the window.

I didn't realize that my son, who's been driving my car, left me on empty. I don't think I have enough to make it to the gas station. So, he's not going to drive my car again, not for a long while. Oh, and the last time he drove it, he and his girlfriend destroyed my MP3 adapter so I can listen to it through the car stereo.

All I wanted to do when I got home was take a baseball bat to something. Anything. My husband's motorcycle. The broken one he bought for me and refuses to fix. Smash all the mirrors in the house because I can't stand the sight of me anymore. Break every dish in the house, throw all his clothes out on the lawn and set them on fire, take an ax to the shed.

2006-09-29T13:30:00.000-07:00

Cushing's in the News 07-24-2006

My Cushing's was found because I refused to give up finding an answer about why I couldn't lose weight. Weight issues are one of the more obvious symptoms of Cushing's.

Anyway, right now I'm on a cortisol High, and I'm testing. Keep your fingers crossed for me to get really high numbers. One more high number and I'll be on my way for my Pit surgery!

http://www.49abcnews.com/news/2006/j...hings_disease/ You will need quicktime7 to play the video, but you are offered a download.

I continue to believe that some of my beloved Turtles are also Cushing's. Especially the ones who've mentioned that they have new stretch marks, etc. Because almost all Cushies are fat, if not MO, I suspect that there will be a higher proportion of Cushies who've had "failed" WLS. That their choice, no matter which WLS they chose fails them because food is not our issue.

I had a therapist who specialized in eating disorders tell me that I didn't have any eating disorder, and that baffled him, because he'd never run accross someone who was MO who *didn't* have some sort of eating disorder. Turns out I have a BRAIN disorder

I told my DH yesterday that there is a significant portion of the population that need a second Pit surgery because they often don't find a cure on the first go. Then he started singing to "my boyfriend's back" substituting 'the bitch" for "my boyfriend" in that silly way he has . He makes jokes when he's uncomfortable, but his song was sure appropriate! I really was a bitch yesterday, pissed off at the whole world.

We sat outside last nigh for more than an hour, just enjoying not being hot. He sprayed the swing down with the pressure washer, playing more than anything, but it sure was hot. While we sat out there, I explained to him why I get like I get when I'm on a High. He knows some of it, but he didn't realize all of it.

You see, when I get on a High, I for the most part, feel really good. Except for the being a major bitch part that is, wanting to throw dishes and tantrums. But I basically feel physically good right now, except for the chronic headache. I have ENERGY, which is something I don't have when I'm on a Low. When I'm High, I have the drive to tackle all the big projects that I want done, like painting and gardening and pressure washing and basically taking over the world. And because I only feel like this for a few days or a week at a time, I feel that I *HAVE* to get busy and get things done because in the past I didn't know how long I will be able to feel this way. And I get mad at Mike and Spud because they don't share my sense of urgency.

I suspect because I have figured out my cycle, or think I have anyway, I might be able to mitigate this sense of urgency. Until I have my surgery and am cured anyway! I'm hoping that this will be so soon. But until then, I feel very confident that I'll be able to tell the Guys that I'll be feeling good again in 10 days, and that they'd better be ready for the next project. I'll be able to give them a schedule so they can prepair for the next round. So they can start getting ready *now* instead of having it sprung on them with no warning

2006-09-29T13:29:00.000-07:00

swinging High 07-18-2006

I'm now higher than not, but not yet high enough to do more testing.

It's sort of fascinating, in a Dr. Spock sort of way, to watch every mood, every physical symptom, charting it to determine where I am. Sometimes I wonder if people are really supposed to be so in-touch with our bodies, and other times I wonder why everyone isn't so in-touch.

The last two weeks have been physically difficult. I've been in a low, but thankfully not as low as I was in June. No adrenal failure, knock on wood, but I was very low nonetheless. The last couple of days I've had terrible kidney pain, an 8.5 or 9 on the 10 pain scale. I suppose I should have called Dr. L, but I didn't. I'm so tired of doctor visits, I want a normal life. But I have no idea what that is like. I remember when I was in my 20's that I had so much energy, so much ... life. I can only hope that the headaches stop once I have the pit surgery.

This morning when I got up my face was very puffy. My eyes looked like I have a bad case of poison oak, which in a very weird and twisted way is a good thing because it lets me know that I'm going to be a screaming maniac soon. The bruise from my last acupuncture treatment still hasn't healed, but then again, I am not really expecting it to since it's only been a week.

I have the will to do things, which is another sign that I'm heading high. Yay! But unfortunately, I don't have the stamina. The lows leave me so weak. It’s like I have Addison's on top of the Cushing’s, which is all part of the magic of Cyclical Cushing’s. I either have too much or not enough. Overdose of cortisol or withdrawal from it, with now a week or so in the middle where I feel somewhat normal.

I've done a few load of laundry today, which is great for several reasons, the least of which is that I need clean panties! The key is to not over do, which is such a delicate balance. When I feel good I want to do all the things that I don't have the energy to even think about when I'm low.

I suspect I have a CSF leak, which considering I haven't had the surgery is a bad thing. Well, a CSF leak is never a good thing, ever. Last month while we were in Seaside I had the leaky feeling, and again on Sunday. It just isn't normal to have your nose suddenly leak when you bend over. It usually happens when my headaches are at their worst, and then I'll do something like bend over to pick something up off the floor, or I'll sweep up something into a dustpan... and then I'll feel something tear loose and my nose will run. It doesn't taste like snot, sort of salty and bitter. Again, it's weird to be so in-touch with my body that I know when the flavor of my snot is wrong.

So, the weather is supposed to be getting hot, just in time for me to be heat intolerant. Funny how that works. Oh well, it will all to my stress.

2006-09-29T13:27:00.000-07:00

UFC of 214 07-04-2006

Dr. L called last week to tell me that I'd tested really high I went through a whole range of emotions.

214 from 6/21. He wanted to know what was going on with me that day, but I was on vacation in Seaside OR, trying to forget that I had any problems at all. Funny how things come and drag you away from the lovely river in Egypt…

Part of me was very excited, part of me was very distressed. Yes, I know the MRI showed a tumor. Yes I know part of the beauty of the River is that it is a defense mechanism.

So, with the number I am closer to some sort of resolution.

I call my husband and cried after I got off the phone with Dr. L. This makes it more real, it means that it isn't a delusion, that it isn't a fabrication. I still don't know how I feel.

It is so hard, for so many reasons. I mean, on the one hand we desperately want answers, answers to why we have all these crazy symptoms. But unfortunately, the answers are as frightening as they come.

I don't want this, but I do. It's terrible, but wonderful sort of. It is validation. It is hope, but a hope that brings with it new fear. That number brings out new questions, new unknowns that I have to deal with. I know that other people have tread the road that lies ahead of me, and I am grateful that they are willing to share what they have seen and felt, willing to share their experiences both good and bad.

This number represents validation. Validation that this is real.

I too think that the testing is nearing an end. I feel that this is starting to speed-up, that it is becoming faster and faster. I know that my cycle is speeding up, and getting stronger at the same time. Like it's some sort of demented oscilloscope. There are some days where I feel like I'm going through a full cycle in a day. But I want this to stop.

I want it to stop, but I am afraid that once this get taken care of, that I'll be fixed in a place where I feel terrible. I am starting to recognize where I am, by how I feel. I have good and bad days, of course, but I'm afraid that I'll get "fixed" in a low state. I suppose we all have this same fear.

Damn, I'm crying at a stupid twilight zone episode. The low has started. I only hope that I don't have the same depths of lows as June. I ended up with my adrenals shutting. Ending up in the ER because it scared my son and he called 911.

2006-09-29T13:26:00.000-07:00

facing the facts, facing reality 06-23-2006

A few weeks ago I got an e-mail from someone who's been courting me for a job. The e-mail wasn't good, there was a re-org and the position was eliminated. To put it mildly, I was devastated.

Devastated not only for not getting the job, but it was a much deeper emotion than was warranted over not getting a job.

I'd been putting a lot of energy into this job hunt. And I realized that what I was doing was trying to run away from the Cushing's. I was trying to do what I do so often, distract...

If I could distract myself with this job, and all the responsibilities that would come with it, then maybe I could convince myself that this wasn't really going on. That I'm fat because... because I eat too much.

Yeah, that's it, I eat way too much, so of course I am fat. I mean, I fill my plate when I eat, and sometimes I even go back for seconds. Never mind that my dinner plates are saucers instead of plates. A bread and butter plate is filled to the brim with dinner is a large meal. Yup, I eat way too much off those plates. I use regular dinner plates for Charger plates, and well, a real Charger is a wonder in it's hugeness.

I have road rage because ... the drivers here are so stupid. It's all their fault. there is no room for error, you didn't plan to merge a mile ago, so it's all your fault I'm screaming at you. Honking my horn at you because you are too stupid to be on the roads. Don't even thing you are going to merge in front of me, and there is no way in hell I'm going to let you pull out of the parking lot. Wait your turn. Oh sure, if I got more than 4 hours of sleep at night, maybe I wouldn't be so furious over everything.

Sure, that's it. It's because I can't sleep. except for when I can't wake up. Or I'm too tired to do anything. And then, of course, it doesn't matter how badly you drive, because I don't care. Sure, cut me off, I know you didn't mean to, sometimes you can't help it. Here, I know that spot is tough to get out of, let me wave you ahead of me. That's okay, you go first, you are probably having a tough day.

I thought if I got that job, I could tell myself that it was manageable. That the tumor wasn't that big of a deal. Oh, wait. Tumor. I forgot. Okay, okay, I didn't really forget. I just wanted to forget. And isn't that the same thing? Isn't it just as good? No? Damn.

So, not getting that job really made me step back and take a hard look at my life. No more trying to dstract myself. No more, if I ignore it, it has to go away. I mean, I've always gotten better, I always feel better, I always get in a better mood. Right? Don't I? Well yes, sort of. Except now the cycles are getting shorter and shorter. It used to be that I would go a long time until I finally snapped. Until I started screaming at random people, or worse yet, the people I love. What used to take months to cycle is now taking weeks. I am afraid that it will get to the point where I cycle hard within a week. Wheee! Won't that be fun?

2006-09-29T13:23:00.001-07:00

whirl-wind work-up at OHSU 05-04-2006

Well, last week I had my week's work-up at OHSU.

My PIC line closed off, and the tape they used ate the skin off my arm, so I've been fighting an infection there. It really chewed up my arm, but it finally stopped hurting.

I got my famous jugs yesterday, so I'll do the first UFC tomorrow. I'm so wound up tonight, that I'm probably high.... Heh, any where else, in any other context, that would sound bad.

So, I didn't perform at the bellydance party on Friday, like I was supposed to. There will be other solos so I'm not really upset. I just couldn't face the questioning looks with the way my arms ended up being chewed up over the week. It would have just been too hard dealing with the questioning looks. Too hard.

Sunday afternoon I got a call from my sister. Our mother had been having some serious health issues, and the doctor called her on a Sunday, and told her that's she's got pancreatic cancer, it's verified. So now I have to deal with that, and with my rotten brothers.

Sunday night my Spudboy started throwing up with diarrhea, so I spent all night in the ER with him while they pumped him full of IV bags, pain medications and anti-nausea drugs. I think I got about 15 minutes snooze time in the ER.

Monday, after we got Spudboy home, and socked away in my bed, I think I got about 90 minutes of sleep, I was too wound up. I had a job interview at 3:00 and had to find and print my resume. Had to get the printer out, the good paper, and all that stuff. Road construction in addition to not being sure where I was actually going for my interview added to the stress, but I arrived in plenty of time. I WOWed him. It was only an informal interview, to see if either one of us wanted to set up the full and formal interview loop. A full loop is an 8 hour loop, and is quite the endurance test. Anyway, I WOWed the guy! He's off for a 10 day inspection of one of the facilities in India, but he wants me to think about where in the organization I think I would fit best, what I would like to do most within the organization, where I want to focus.

Yesterday I had a partial unfill. I "only" had 1.5 cc in my band, but it was too much. I was getting tighter and tighter, and we decided that I should have .25 removed. I have had every meal without pain or PBs or slimes. Heaven! I'm hungry, and I know I'm eating more than I should. Funny, only a Banster would think that an entire chicken breast was too much food? I'm not tracking my meals, which is added stress I don't need right now. NWWLS has a new surgeon who's joined their practice, and he's an experienced neuro-endo-surgeon who's apparently one of the leading docs in the area, both subject and geography. He quickly outlined what the surgery would be in I had to have the adrenals done.

So, tomorrow I get my test results from Dr. L. I am excited and scared at the same time. I don't know what time he's going to call me. And I'm sitting here, wound up like a top.

2006-09-29T13:23:00.000-07:00

not reading threads... Date Posted: 04-14-2006 at 09:00 AM

I'm avoiding threads where people talk about their weight loss, no weight loss challenges for me, and I'm even avoiding the threads where people talk about their first year. Just too painful, and I find I cannot face their successes that so thoroughly elude me. I feel like a heel for not congratulating them, for not cheering their successes, but I just can't face it. It's like the other day when I went shopping, and wondered into the Nordstrom Rack. To say that I was depressed because I still wear the same clothes I did before I was banded is like saying the Oakland Firestorm was a small brush fire. I was absolutely devastated knowing that being a good little Bandster is so futile, so pointless. I'm never going to lose weight, and I'll be fat forever.

2006-09-29T13:21:00.000-07:00

belly dancing last night 04-06-2006

Last night was my Wednesday night belly dancing class. It was my second class with this group, and the intermediate class is also the solo class. So I thought I'd be doing a solo next week, but as it turns out, we didn't have a soloist this week, and the instructor wanted to know if I was ready to go.

So, I haven't got anything prepared, all my music is still packed up, and well, I told her to pick a slow veil piece. So there I am, in front of every one and the new music starts, music that I've never heard before, and I dance. It was such a beautiful piece, so sensual and flowing.

When the instructor announced that I'd be the soloist that night, I was greeted with some curiosity, because here I am, my second night, being the featured performer. I started with my back to the audience and started with beautiful arms and the slowly unwound myself from the veil. It was a 5 minute solo, and I rocked their worlds.

At the end of the dance, the soloist sits in front of the troupe, and they critique the dance and dancer. Last week, there were two soloists, and this week just me. The combined critique time from last week took about as long as my single critique. I knocked their socks off! One woman asked how long I'd been dancing, and I said, 'I've been taking lessons off and on since I was 18, and now I'm old." At which point they all started laughing.

After the class one of the drummers made a point of telling me how much he liked my dance, and wanted to know if I understood the effect it had, if I had done it on purpose. The instructor laughed, and said "of course she did, she's an experienced dancer!"

It was such a great night last night. Just great. I still feel rather unsure in the regular class, but that comes with being new to the group. Every group does things differently, and I just have to get used to the way the group does things. I sure need work on my zill work!

The instructor really wants me to dance at the hafla next week. Its an "alternative hafla" where it was described as a any music, any costume with a bellydance flair dancing style. It doesn't have to be strictly belly dancing, and I think it will be a while lot of fun. I'm thinking one of the pieces from Southern Culture, new bra, gold belt and jeans. I think that would be a whole lot of fun! I think a shimmy/fast piece would be nock-out! Espeically since I am a fat gurl.

2006-09-29T13:20:00.000-07:00

how much worse? 04-04-2006

The last couple of weeks have been rough, and they are getting worse for me. I feel like I'm on a high steroid taper for asthma, but instead of tapering, it's getting worse, and I'm not talking any steroids.

I also look like I'm on steroids. And it's getting worse. When I shampooed my hair yesterday, I had enough leftover hair to make a mouse. I've always had really super thick hair, but now its falling out fast. I'm freaked out, which doesn't help my stress levels.

But probably the most disturbing thing is that I'm turning into a screaming harridan. I am so close to bitting anyone's head off for no good reason other than they looked at me funny. I'm afraid to go out into public for fear that I'm going to really hit someone.

I feel like I've hit critial mass, but things are getting worse.

I've tried chamomile tea, bio-feed back, walking, but nothing is helping. I'm pissed off at the world and ready to pick a fist-fight over a parking space.

This is NOT me! I'm normally so laid back that I'm practially asleep. My husband was 30 minutes late lastnight and I was ready to rip him a new one.

2006-09-29T13:17:00.001-07:00

week's activities for week ending 4/1/06 04-01-2006

Well, It's sure been a wild week for me.

I got all moved out of my apartment at Idaho State, and moved back with my husband and son. I've sure missed them. My MIL drove back with me, which is a good thing because I'm doing that "completely blind in the dark" thing. Hard to drive 14 hours, but we did it.

I still have half a dozen bins to unpack, and re-integrate back into my family. I have to go through things and repack things that I don't need. I'll be saving them if I decided to go back to ISU, after everything is taken care of.

Still haven't figured out what my husband did with my main pencil pod with my drawing pencils, nor my main sketch book, but I have a back up set of pencils and sketchbook, even if the pencils are not in a nice contained pod.

One of the first things I did was find out if the local parks departments was offering bellydance. Joy of Joy! They are, and they are offering it at the new facility they built by my house. So I have belly dancing in walking distance! Today my husband took me down to a local Egyptian shop and I bought my first professional dance bra, I'm so excited! I got a gold beaded one, in the Turkish style. http://www.pyramidimports.com/bellydancing/bdbs1004.htm is a pix of the bra I got, but I sure don't have her body! :blink: I was amazed that they had a bra to fit me, but they did, and in stock! I'm so excited. I already have a burgundy and gold belled dance belt, so I didn't buy this one.

I spent the morning clearout out our pantry, getting rid of almost all the grains and open pasta and bread mix types of thing. Some of the packages have been in there for ... gosh, 3 years, and some how, moths got into the flour products. So everything went into my neglected compost/worm bins. I was happy to see I still have some worms hanging out, neglected as they were.

This week I got my date to go to OHSU for a complete test pass.

Wow, what a week.

2006-09-29T13:17:00.000-07:00

a dream. 04-01-2006

Last night I had some very strong dreams, some pleasant, some not, but the one that is sticking with me, (besides the part about being feed shots of Senior Frog's green tequilla) was one of love and self acceptance.

The scene was after a huge flood, the waters had receded and the clean-up had begun. A very large woman was being interviewed by a national morning talk-show, like Goodmorning or Today (I don't watch these types of shows, but you know the type). She was about 350 pounds, and a professional belly dancer. She finished her interview, than ran out infront of the celibration parade and started dancing. She wasn't wearing typical belly dancing costuming, but it was still very pretty. She started dancing, and suddenly she opened her costume and "gave birth" to two other large dancers, who were strikingly beautiful, even though they both weighed about 300 pounds. They were also dressed in skimpy costumes, but they didn't care what anyone thought, they just danced their hearts out, danced to show their joy and happiness that the flood was over and reconstruction was to begin.

This was so amazing for me. I woke up with a sense of renewed determination. Here were these fat dancers who were out there for everyone to see, they didn't care what anyone thought, they just were out dancing their joy that the disaster was over, and time to rebuild.

I have been so stressed lately, feeling like I'm treading water and not making any headway in my journey. It's hard to face the scale when I gain weight on 1000 calories, but I'm not giving up.

I'm dancing like no one is watching, whirling my way through the debre of my life. I'm a bull terrier, once I latch onto something I don't let go, even when common sense says to move on. But I'm not giving up. I'm not letting go.

Never give up, Never surrender.

2006-09-29T13:14:00.000-07:00

home again, home again, jiggity jig 03-27-2006

Well, I'm all home. We got almost everything in the truck and my car except for my spinning wheel and 4 totes of stuff. My M-I-L drove back with me and we had a very nice time together. I've never really spent much time with her, so this was a chance to bond.

It took what felt like forever to get everything packed and cleaned, but it only took a day. I left the apartment like I like to move into one, with a few hangers, a shower curtian, soap and TP. Once you have to pass Navy housing inspections, well you know how to leave an apartment!

It snowed about 3 inches of wonderful wet big flaked snow Saturday night while we were packing up the truck. We'd gone to dinner in our t-shirts because the night was so relatively warm--high 50's. That's warm when the weather has been for months in the teens as a daytime high... By the time we were done, a big storm had blown in, and I do mean blow! The temp had dropped about 25-30 degrees in an hour, and was snowing hard!

By the time we got up the next morning, late because the motel lost power, all the roads were bare and wet, so we didn't have to worry about that, but it was C-O-L-D with that wind blowing. But DH got off and only had to stop the truck about 8 times to re-secure the load. It was blowing so hard that he almost lost one bin--it was litterally hanging off the end of the truck by a bungie cord! The cheze lounge was almost a lost cause too, but he was able to get it home safe and sound!

It took us about 14 hours to get home. That is a long-ass trip when you are crammed into a vihicle with a big chuck of your worldy possessions... And your MIL whom you hardly know. I did most of the driving, and had to stop when it got dark. I can no longer see in the dark. This started a couple of weeks ago, I can't read road signs until they are 2 seconds close. Not a good thing. So Mary Lynn took over and drove the last 4 hours home.

Heh, I was Miss Cranky-pants when we got home, so I took my meds and went to bed.

So, now comes the long process of unpacking and re-integrating myself and my junk back into my family. I already have a few rules that will change, like "thou shalt put the new roll of TP onto the spinner" and "thou shalt hang up your jackets" and "thou shalt not cover the antique furniture with your motorcycle parts and gear" to implement.

I'm going to take a break from unpacking to drive down to the lab and pick up my lab results.

I want to thank all of you for your love and support. It really means so much to me knowing that you are here for me, weaving a mesh of love and hope around me, prayers and white lights and positive energy combining to create a cocoon of kindness to sustain me for my fight.

Thank you, most sincerely and honestly

2006-09-29T13:12:00.000-07:00

cortisol--cushings ramblings 03-21-2006

... cortisol is the determining factor and that cortisol ( a potent steroid)can destroy or affect every organ in your body: skin, hair, heart, muscles, etc etc etc, diabetes, etc. ....and that you want to make sure this steroid does not destroy you ...

I'm just so out of sorts, out of time, out of place right now.

I'm leaving school for now anyway. I just cannot handle school, being away from my family, and my health right now all at once. Perhaps it will be different by the fall, perhaps it will not. I just don't know.

And the not knowing is what is so hard on me right now. --sometimes I know that I am the very definition of patience, and other times I know that I'm the most impatient person on the face of the planet. The waiting for results right now is so very hard. I had my first round of tests 11 days ago, the DHEA, LH FSH and serum total testosterone. On the 11th I did the 24 hr urine free cortisol test, the famous pee-ina-jug test.

Part of me thinks that I should be happy that the restults are taking so long, because it means that there isn't a problem with them, that they are all normal.

But the defeatist in me says that the results were way out of normal, and they don't believe the results.

I've been feeling like I have early onset of alzheimers, even though it doesn't run in my family. It is so hard to find the words sometimes. I notice it most when I'm talking, the words elude me, or are just flat out wrong. Sponker told me that he thinks I've always been a little scatter brained, which is probably true, but he said he has noticed that it is getting worse. We were trying to find cheap gas (as opposed to saving the money driving and just going to a near place, but that's what he wanted to do... ) and he kept pointing out to me that my words were wrong. We were driving past Park Place ltd, that car place with the exotic cars, when I pointed out the orange car. But the problem it wasn't orange, it was yellow.

I sure feel like a hypocondriac sometimes. I know I've been one in the past, but usually it comes on after I've had something that they missed. I know I panic after something goes terribly wrong, and I worry about every little symptom. I know that many people with cushings are accused of making it up. Mike is worried that I'm going to end up making myself sick if Im not sick now. "the mind body connection." but I don't think he gets it.

Someone had posted a very interesting thread on the Cushing's board about whether PCOS was a red herring, very interesting, and it's gotten me thinking about it.

2006-09-29T13:11:00.000-07:00

not patient, not happy 03-15-2006

I found out today that it will be a week or two before I get my results from the first round of Cushing's testing. I can't help but pitch a big hissy fit at the thought of waiting two whole weeks for my test results. Dr. E will be out of town until next Monday, and I'll be back in Idaho by then. It just feels so far away, not only in time but space as well.

I see a new PCP tomorrow, my doc has moved to Everette, and that is just too far to go. I've been with her about 10 years, but I was thinking it was time to move on to a different doctor, since she wasn't really taking me seriously anymore. I mean, I had sleep apenea and serous sleep problems and I basically had to twist her arm to get it taken care of. She wanted to blame most of my issues on "needs therapy" as opposed to really wanting to find the cause.

I am just feeling so sorry for myself lately. Monday I ended up in the ER with another bout of celulitus. And my headache has gotten worse. Probably from all the stress from the Cushing's and decideing to quit school for now.

Pain makes things worse. It just does.

I feel anxious and stressed. I'm out of the lexapro, so I guess I need to get that refilled. Duh.

I miss my pilaties ball. How funny is that?

I started to use a new drawing book, "drawing on the Right side of the brain." it's pretty interesting. A very different way of looking at things, much more an adult program than the Mark Kistler books.

2006-09-29T13:10:00.000-07:00

1 year bandivarsary 03-14-2006

HI Campers! (Hi Crystal!)

Well, today is my one year bandivarsary. Not a single expectation I had before my banding has materialzied at least when it comes to weight or size, but perhaps the evaporation of my asthma symptoms (yay me!) makes up in some small measure for not losing weight. (that whole not-dead thing goes a long way I think)

I have lost a net of 30 pounds since being banded. I've lost 15 pounds since April 2005, which is hardly impressive.

This last year has been quite a ride for me. Right now I'm not even bothering to try to lose weight, I'm just concentrating on maintaining. And I'm doing a very good job of that. :d Someone on another board told me that they were disapointed that I've given up, that I wasn't even trying, so of course I would fail. But that's just it, I haven't given up and I haven't failed.

I don't think the band failed me either. Or maybe I do. I dunno. I know that I was very angry that I wasn't able to lose weight. I was well on my way for a while to developing my first eating disorder -- this summer and fall I was completely obsessed with counting everysingle calorie trying to lose weight. (tooth paste does not have any significiant calories, BTW) I spent a month at 700 +/- 100 (okay, mostly - ) because I couldn't lose weight at 1000 or 1200 or higher. I lost 1.5 pounds that month I was too tight.

I thought I had developed a leak, but it was just a case of an interventional radiologist who didn't have enough experinece letting out more fill than he was putting in...

It's hard watching everyone pass me by. It's hard to watch folks who started out with similar stats to me loose 10 sizes to my one size lost. It's hard to watch them lose so much more in pounds that I feel like I ever will. But at least I've recorded every one of my NSVs that I've ever noticed, which does help. After all, when I'm invited to go on Oprah when I finally do get things figured out, I'll be able to share more than pounds lost, I'll be able to share the life I've gained.

So, since I badger everyone at their bandivarsaries for their favorite NSVs, here are my favorite ones right now.

My top ten NSVs in no particular order.
1. I didn't die from resperatory failure. Probably my biggest NSV, that whole not-death thing. Probably my favorite one too.
2. I have wiggle room when I fly, and I don't need an extender anymore either. (is that one or two?)
3. I've run for the bus without even thinking about it
4. I've been able to chase my Spudboy down the stairs and out into the street before having to stop becaue I was laughing so hard
5. I've started belly dancing again, and I'm a professional belly dancer too now.
6. I no longer have a "breathy" quality to my voice, but I'm told it's strong and clear now. (no more asthma!)
7. I am no longer The Great Crystal Dam in the bathtub
8. I can cross my legs. HOLY SH*T! I can cross my legs!
9. donuts no longer have any appeal
10. I have realized that I will never go hungry again. (it's a wolves thing)

2006-09-29T13:08:00.000-07:00

Saw the Endo today 03-10-2006

Well, today I saw the Endo, but it didn't go quite how I would have liked. Becaue I don't have the strechmarks, and because I work out I don't have the thin arms and legs, he doesn't think I have cushings, but he ordered the 24 hour urine test and three other tests. (my husband has my PDA with that information). I do know they are testing my testosterone because of the increased body hair, the increased facial hair (6 laser hair removal treatments and it is all growing back) and the male patterned baldnes, he thinks I might have something wrong, like a masculinizing tumor, but probably not cushings.

He wasn't interested in my sudden and unexplained weight gains, my fatigue, or my inability to lose weight. I think the man weighs 150 soaking wet. He's going to send me to a doctor that specializes in metabolic issues, although she mostly sees professional atheletes. He kept refering to me being obese (no kidding) and thinks that is why I'm having all the problems. He thinks I should work harder at losing weight. (hello! I had WLS for crying out loud, I work out, and I've managed to lose 15 pounds net since April.

I'm not terribly optimistic, but he didn't dismiss me altogether either.

He did tell me to stop taking the thyroid medication. He looked at my test results from Jan and couldn't believe the other doctor put me on thyroid medication.

This doesn't mean that I don't have Cushing's, it just means that I won't know until after I get the test results back from the lab, and until I finish peeing in a bottle for 24 hours. Oh joy that one...

I just sort of thought that after reading all that I've been able to read about Cushing's that some of the major symptoms that I have would have been looked at, and not brushed aside.

He wasn't interested in my journals, my before and now pix to see the difference and I was disapointed at that. The Cushings's board said to bring all that stuff, and he didn't even want to see any of it.

2006-09-29T13:05:00.000-07:00

More Cushing's ramblings 03-06-2006

Friday I meet with an Endo, finally. I will be going to Seattle this week, and I have the appointment with my husband's Endo. (Husband is diabetic, and this is his doc)

I tried to make an appointment with the Endocrine Clinic at the UW, but they wouldn't even talk to me without a referral from another Endo and a wad of test results. My Aunt wanted me to go there right off, but they wouldn't even talk to me.

I'm sitting here in near tears because I'm so jumbled up I don't even know what my feeling are, but none of them are happy and light. My husband doesn't totally understand why I'm in a panic, because he comes from a medical family. He and his sisters feel that since I haven't been officially diagnosed, then there is no point in worrying about anything. Since no tests have been run, what's the problem?

I know that part of my grief comes from my past history with doctors not taking me seriously, until something really serious has happened. I had kidney stones, and they sent me home because I "just had a back ache" When I brought in the stones they at least had the good grace to be shocked. And that is just one of many examples of doctors not believing there was something actually wrong. When I had a collapsed lung, the pulminologist told me my only problem was that I was fat. I had an oxygen saturation on room air of 82, but because I was fat, not because my lung was stuck to itself. Like I said, doctors don’t’ take fat women seriously, that or they just don’t take me seriously.

I’m afraid that this new doctor will just see a fat woman and just tell me to lose weight. It’s not like I haven’t tried to lose weight, I mean crap, I had the Lap Band put in last year, and since the end of March, I’ve managed to lose 15 pounds net. Yes, I am very, very glad I was banded, but it’s been hard watching people lose 100 pounds who started with a similar BMI. I spent a month at about 700 calories and managed to lose 1.5 pounds in a month. Of course, when I went back to 1000 calories, I gained 10 pounds in a week. I’ve managed to lose 5 of those pounds.

I’m scared that they won’t find anything wrong with me, that I’m just another head case. I’m afraid that once again I’ll be told to tough it out.

2006-09-29T13:00:00.000-07:00

No help for the wicked (2-2-5)

No help for us. We are fat, we are gluttons, we are weak and undeserving of help, sympathy, or adequate medical care. Like Orson Wells said, “Gluttony is not a secret vice.”

Do I believe that? Some days I do in fact believe it, when I’m down, and lately more because of how ill I have been. Mostly it is a load of hog wash. Fat does not equal ugly.

There has long been a weird relationship with food, the body and the Christian church. And of course, we all know the impact that both Protestant and Catholic sects have had on Western Civilization…

Some of the Christian based weight-loss schemes are screaming “fat people don’t go to heaven,” and “use our program based on Leviticus and you will loose weight and be closer to God!” Sorry, I’ve read Leviticus, and I am NOT eating bugs…. (I call them schemes because I think we all here have come to the understanding that “diets” are just schemes…) If you had better self-control, more self-esteem, more will-power, were a better person, loved God more…. You would lose weight and be a better person.

There is no understanding for the overweight from most doctors. Before my husband had his band installed, the cardiologist said “Have you just tried cutting out sweets?” Now, on the face of it, this is good advice, advice we could all use. However, this showed a complete lack of understanding on the part of the doctor. You see, before my husband had his band installed, he weighted 596 pounds with a BMI in the high 80’s. Cutting out sweets would have certainly helped, it wouldn’t have stopped my husband from eating two or three fast-food meals at one sitting, or any of the other overeating behavior some of us know intimately, and other behaviors we are only starting to understand in ourselves and others.

I am currently having difficulty with my asthma: hospitalizations, steroids, greatly reduced lung function, other things as well. What am I told? Well, just lose some weight, we aren’t going to help with this, we are just going to pass judgment on you. Sudden and unexplained weight gain? Well, just don’t eat as much… (never mind that I gained 10 pounds overnight with severe edema…). I have to suspect that part of Delarla’s current adventure with gauze might have been caught earlier if she was thin.

I was told by my doctor that I just need to take up running. Yes that’s right, take up running. Can you imagine a woman with a BMI in the high 40’s running? (Please see the thread about giving one’s self black eyes…)

Being fat or overweight or big boned, or under tall, or metabolically efficient or famine resistant doesn’t make us failures, bad people or jerks. We might be over sexed (skin is the largest sex organ…), but we are not failures, or bad people or jerks. If we are failures or bad people or jerks, it is independent of our weight or size.

2006-09-24T01:37:00.000-07:00

Flash of insight, Turtle Style 02-15-2006

Today I had a bolt of insight. My Cushing's makes it close to impossible for me to lose weight. The band isn't going to help me lose weight. Cutting my calories and increasing my exercise and actives isn't going to help me lose weight. Until I get this thing straightened out with the celulitus and my skin graph, all work on the Cushing's has to go on hold. Boo-hoo for me.

No matter how I try, I cannot make the change in my Firefox browser so it doesn't show signatures, so I have to look at everyone's signatures. All the Turtles have to look at everyone's signatures.

Now, if you are not a Turtle, you cannot understand what this does to us. You cannot understand what it is like when we see your signatures and you have lost twice as much weight, in a third of the time. It is so incredibly discouraging when we see that you have lost 60 pounds to our 30 pounds.

We Turtles understand all too well that you want to celebrate your success. We in fact, celebrate them with you. But watching your tickers makes us feel like we did when we were kids, when we were the last ones picked for sports teams, when we never were asked out on dates, when we were outsiders.

This is just something that hit me today. This is one of the reasons Turtles get discouraged and leave.

2006-09-24T01:31:00.000-07:00

Your changing body 02-15-2006

One of my bandsters had written about being dissatisfied and bored after losing more than 60 pounds. She wants more, but isn't sure what is going on because she's changing so rapidly. ...

Romance is not just for the beginning. Romance is for sustaining the relationship.

Okay, I can't talk about losing weight, and the changes it brings, but I think I can speak to the base issue.

Everyone gets bored occasionally, even I do. But the key is finding something that makes you passionate. I'm not just talking sex, but passion for life.

Of course you are in a weird place right now, and of course you wouldn't know what you are doing, where you are going. You, my dear, are entering uncharted territory. You are physically changing dramatically, and with those physical changes come emotional changes. Instead of hating what is happening to you, instead of hating the changes, I think you need to fully embrace the new you. Celebrate because you are going where you wanted to go.

But it's hard to understand the why and how when you are right in the middle of the transformation. I think butterflies don't like it when they first change. They used to be one thing, and everyone around them knew what to expect, they knew what to expect as the caterpillar. Becoming a butterfly means that they have a whole new skill set to learn, they must learn to fly, they must learn a new way to eat, and they must learn a new way to interact with everyone around.

You have all this new found energy that you are not used to having. Of course you want to shake things up because you now have enough energy to want something more, something different.

I think your needs go beyond the bedroom. I think right now you need a little application, because we all do. I think you need some extra TLC because you are changing so rapidly, and change can be very scary. But I think if you want more romance, you will need to be more romantic in turn. But only you and your husband can decide what is romantic for you. Late night picnics under the stars, love notes, camping trips, dancing... all different.

Perhaps that's it! Dancing! I know that ballroom dancing is making a comeback big-time, and for good reason. Its great exercise and romantic at the same time. It will give you a way to connect with your husband on an intimate level, that doesn't involve being naked, but rather on a different level that is just as important as sex.

But one thing I think is important here. You need to find something that you are passionate about that has nothing to do with sex. You need to channel this new energy you have into something constructive. I don't know if you have community parks and recreation centers where you can go learn a new hobby like painting or ceramics or woodworking or something like that. You might look at your working situation, maybe transfer to another group or take some classes that will further your career. (my career is one of my passions) Perhaps volunteer with an organization that you feel strongly about, the local animal shelter, homeless shelter, or battered woman's center. Get involved with politics or the local gardening club. Start a catering business where you only do children's parties. Buy a new video game....

Your husband and children cannot fulfill all your needs. I don't believe it is fair for you to ask them too either. You need to find something else you can focus on, something that gives you passion, or fires your smoldering passion

2006-09-24T01:30:00.000-07:00

The Band is taking the easy way. 02-05-2006

so many of our bandsters, our celebrated Rabbits, it really does seem like magic. It has worked almost like magic for my husband, who most definitely is a Rabbit.

Something that has me viewing eating as a chore many days MUST BE MAGIC.
Something that has given me back my life MUST BE MAGIC.
Something that has given me back my husband MUST BE MAGIC.

In many cases the only difference between magic and technology is understanding the science. Since they don't know exactly why the band work, because they only theorize that because of the way the band is place people feel satiated.

This is in some respect the easy way. I mean, I can't even begin to count the number of people who've lost 50, 75, 100, 150, even 200 pounds with the band. For the first time ever for so many people, they have success. THEY HAVE SUCCESS. Not only have they lost the weight, but they have kept it off. They have success. THEY HAVE SUCCESS.

So, what's so wrong about taking the easy way? Why does it make it better if it's a struggle than if it is easy to lose weight. Is the weight loss less valuable, less worthy of celebration than if every ounce is a struggle like mine? Need to start an entire new thread.

2006-09-24T01:28:00.000-07:00

Turtle Tribe call to action. 02-01-2006

TURTLE POWER!!!! We are slow losers. But we need to demand answers.

I've been thinking about this for the last forever. Or at least it feels like forever. Why are we so different, why doesn't the weight fall off of us like it does our rabbit sisters and brothers?

So, I decided that instead of ranting and raving about not losing weight, crying to the folks that can't help with the underlying problem, I decided that I would start crying to medical doctors, not to therapists.

I went to my PCP and demanded answers. He couldn't help me, other than putting me on thyroid meds, which as it turns out I needed. But he couldn't help beyond that, and I haven't seen much activity scale wise from the increased thyroid function. He said I should find an endocrinologist, and good luck. Not much help there, but I have a sneaking suspicion that he was baffled, well, basically because he told me "I'm baffled."

So I went to another doctor demanded answers. He couldn't do anything, but he did refer me to an internist. She's wonderful; she doesn’t downplay my problems, or my concerns. She doesn't blame me for being fat, she doesn't view all my problems through that if-you-lose-weight-your-problems-will-go-away lens.

And who here hasn't had all their medical problems blamed on their weight? I think that might be why we, as turtles, haven't demanded answers, demanded that they figure out why we can't lose Wight on 1200 calories, or 1000 calories or even less. We think that if we just follow the Bandster rules and guidelines like good banisters, that if we do, the weight will fall off of us. I mean, this works for everyone else, why doesn't it work for us?

Because I think there has to be something else going on with us. Medically speaking, there has to be something that is keeping us from losing weight. If all the literature says that women will lose 1 to 2 pounds a week eating 1200 calories a day, if all the banding literature says that we should expect to lose 1-2 pounds a week, if we follow the rules.

Well, we are following the rules. We are eating within the stated guidelines, or if we are too tight we eat less, we exercise, we drink water, we attend support groups (LBT if nothing else); we do all these things and in most cases see a 1 to 2 pound loss a month.

So, how long do we beat ourselves up? Why shouldn't we get discouraged and stop trying because, just like every other wild hair-brained scheme to lose weight, this one doesn't work either.

Someone said that their doc said that if the thyroid med didn't work that we couldn't blame the medication, which I took to be one more example of blaming the fat person. The implied message that I took away was if it doesn't work, it's your fault, again. Well I say rubbish. It may be that the thyroid medication isn't the answer, but there has to be an answer somewhere.

So, if you are a true turtle, or even a winded wabbit, call your doctor and demand answers. Don't take no for an answer, don't take, "if you just lost weight" for an answer. If your surgeon's office can't help, talk to your PCP. If she can't help, demand a referral. Cry, weep, and threaten a break down if you must, but demand those answers. Don't let them shuffle you off to see a therapist as the only course of treatment either.

I think we owe that much to ourselves. We owe that to ourselves, our families and loved ones. We even owe it to the other turtles who come after us. But mostly, we owe this to ourselves.

2006-09-24T01:27:00.000-07:00

Fears 01-29-2006

The other day someone posed a question for a fun Friday thread -- what are you afraid of.

Well, I'm afraid that I have Cushing's but at the same time I'm afraid I don't have Cushing's. I know that doesn't make sense, but that's where I am. If I don't have it, then I have something even more rare and weird, possibly something call something like "metabolic disorder X..." Oh good.

But if I have Cushing's then what kind do I have? I'm afraid I have a brain tumor. I'm afraid I have some tumor on my adrenal. I'm afraid I have lung cancer. Tumor. That word echoes in my brain, in my head, in my very soul. I'm not used to being afraid. I picture myself as more the fearless type, but I cried myself to sleep last night.

I'm afraid that if I have Cushing's I'll be part of the 20% that isn't cured. I'm afraid of more surgery. I'm afraid that the recovery will be as awful as it has been described by some of the folks that have recovered. One woman said that she was in constant pain and it was like she had fibromyalgia. Okay, I had to laugh at that, if the worst of her recovery was feeling like she had fibromyalgia, then sign me up. You see, I have fibromyalgia.

Is it worth walking through fire? I guess the real question is more along the lines of why wouldn't it be worth it to become healthy and have no more symptoms.

2006-09-24T01:15:00.000-07:00

Cushing's Syndrome 01-27-2006

1/27/06 I feel like this all make sense, like I've been working with a jigsaw puzzle with out the box, blindfolded. The more I read about this, the more it is just an ah-HAH!

I figure I'll just track my Cushing’s stuff here, just to keep it in one place. This is what I posted on 1/24:
Well, I have a tentative diagnosis. The internist thinks it is very likely that I have Cushing’s syndrome. So, I go for a new round of tests Friday to find out what kind I have, so I can start a treatment plan.

I'm in a weird place. This sort of makes it real, but yet not real. I don't want to go to work, but well, I have to. I just want to go to bed and sleep, which is what I usually do when depressed. I thought I'd be happy with an answer, but I have a head ache. My DH reminds me that it is only a tentative diagnosis, even if it makes sense.

Cushing's Syndrome http://www.niddk.nih.gov/health/endo...s/cushings.htm
Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year.

... Treatment depends on the specific reason for cortisol excess and may include surgery, radiation, chemotherapy or the use of cortisol-inhibiting drugs. If the cause is long-term use of glucocorticoid hormones to treat another disorder, the doctor will gradually reduce the dosage to the lowest dose adequate for control of that disorder. Once control is established, the daily dose of glucocorticoid hormones may be doubled and given on alternate days to lessen side effects.

***
So, I've had a few days to get used to this. Funny. Right now I'm not scared of this at all. I could have a brain tumor, and I'm not scared. I'm not stressed, I'm not freaked out, well not very freaked out anyway. Weird, weird, weird.

I guess part of it is that now that I have a name, or even might have a name, it isn't scary. It's like in Fantasy, you never give your true name to the bad guys, and once you have the true name of a demon you own it. You control it, and it has no power over you. I sort of feel like I have its name. This thing that has prevented me from the weight loss success I so desperately crave.

I called my sister last night. Under pain of never speaking to her again (I know, an empty threat) I made her promise that she wouldn't tell our mother. I just really can't deal with my mother having to come up with her own rare-and-potentially-deadly-but-very-treatable disease just so she gets all the attention. I didn't tell her that it was potentially deadly, but that it was rare and treatable. No sense causing her stress where she doesn't need it. She said she couldn't deal with our mom needing another new rare-and-potentially-deadly-but-very-treatable disease either.

Today I had more blood work done because that's what they do, more blood work. I was able to get my appointment moved up a week, so I'll see the internist next week instead of in two weeks. 3 days is easier than 10 days.

****

I have to admit that I'm afraid that they won't be able to do anything to help me. That I'll be fat forever. That there will be nothing that they can do, and I'll just have to live as a failure.

I try so hard to not read about other people successes. I know that makes me so very shallow. But I can't help it, I feel so miserable when I read about how someone with a lower starting BMI has lost 75 pounds in the time I've gained and lost the same 5 pounds. I feel bad that I can't share in their joy, that I can't celebrate with them.

2006-09-24T01:11:00.000-07:00

My complete list of NSVs 01-25-2006

Here is my complete list of NSVs (non-scale victories) today. Since I am not seeing any change in the scale, I decided that I needed to review my progress, to see how my life has changed since March 14th, 2005. Because I was so distraught earlier this week because I listened to the damn scale, I decided I needed to list them all in one place.

If you are not currently tracking your NSVs, I really want all y'all to start tracking them. Besides, when we are all invited to the Oprah show we need to have some evidence besides what the scale says, right?

My most important NSV is that I haven't died from respiratory failure.

03-27-2005, 11:04 AM
I finally have an NSV! my rings fit again! And I don't have the terrible edema problem I developed over Christmas any more! Woot! Two NSVs for week two!

03-29-2005, 08:18 AM
This is a gi-normous NSV. I haven't used my inhaler in five whole days! As many of you know, I have terrible acute and chronic asthma. Five days before my band installation, I had to be taken to the ER via ambulance. My asthma was one of the main reasons I got the band, that whole prospect of death by respiratory failure just didn't appeal to me. (..."I want a death by misadventure)
My book bag doesn't seem as heavy as it was before I was banded. (and I do almost all my walking with that book bag)
It doesn't hurt to stand at the sink when I do the dishes anymore. I believe it is because I can get closer to the sink because my tummy is smaller. I've lost an inch from my waist!
Speaking of inches lost, I've lost a total of 11 from my entire body.

03-30-2005, 06:29 PM
another day, another NSV! I ran up a flight of stairs this evening. I didn't even realize what I had done until after I had done it! And my had my 20 pound backpack on. I wasn't even winded when I got to the top either!

New crop of NSVs 4/5/05
Okay, one of the women in my math class wanted to know how much weight I’ve lost. “You’re looking good! How much have you lost?”
My purple robe fits me! My jeans slide off my butt!

New NSV 5/7/5
Monday will be my eight week bandiversary. All my pants have been very baggy, so today I tried on a pair of pants I haven't been able to fit for 4 years and I could button them! Size 22 black jeans.

05-10-2005, 07:44 AM
Sunday night I woke up because I was laying on something hard. I figured that I must have rolled over on a book or something like that. (I sometimes fall asleep reading). I felt around in the dark, but I couldn't find anything that didn't belong in my bed.
The hard thing? it was my ribs.

05-19-2005, 11:20 AM
the other day the weather was on the wet side, so I zipped my jacked. Just like that, without even a second thought, zuup up the zipper went.
And then it hit me. I. Zipped. My. Jacket!
No wiggling, no struggling, no thought! Holy weight-watchers Batman!

05-24-2005, 11:56 AM
I got a great NSV Sunday night when I got home. My sweet son wanted to know how I was doing, with the band. We've been apart since I got my band 10 weeks ago. He said I looked really good, and that my face was full of life, and that I was glowing.
Then I had to chase him down the stairs and out the front door, and around the truck. I RAN down the stairs, I RAN around chasing him until we nearly collapsed laughing!

06-21-2005, 10:09 PM
Today I wore a pair of jeans I haven't been able to fit into since 2002.
Today I walked 15 minutes to and from the restaurant for lunch, and I wasn't winded, and I didn't need my inhaler.
Today I took a walk with my son and he had to tell me to slow down (of course the silly boy wasn't wearing any shoes...)
Today I went grocery shopping after work, and then DID NOT collapse on the sofa all night.

06-23-2005, 11:23 AM
Another day, another NSV. Today, not only am I wearing for the first time, a shirt I got for Christmas, but I RAN FOR THE BUS. Yes, you read that correctly, I RAN for the bus. It's not like there wasn't another bus in 5 minutes... but I RAN. Me! and I wasn't winded either!
Heh, sure, I'm happy with all my NSVs but a part of me is wondering when I'm going to start having some weight loss!

06-26-2005, 09:40 AM
And here I was, worried that I'd never have any NSV when I started this journey...
Today, I needed a belt! Now, I'm not in any real danger of pulling a Jonathan in the grocery store, but my pants are uncomfortably loose. I didn't even think that was possible!
So, I dug out an old belt that I haven't been able to wear and it fit!
1 notch down, 13 more to go!

07-13-2005, 08:29 PM
Major NSV time!
I had to get a pair of Khakis for my trip to NY this weekend. I was told "brown khakis" which don't really exist... Anyway, I digress.
I tried on a pair of 22, thinking they might fit. Nope, too baggy. I tried on a pair of 20s! They were on the baggy side! I got a pair of 18s, and they fit!
I fit into a size 18 today!!!!! Okay, I didn't buy them because they were not pretty, but I could put them on! Oh my gawd, oh my gawd, oh my gawd!
A size 18! I haven't been able to squeeze my pretty little self into a size 18 since my baby was small!
Oh sure, my jeans aren't a size 20, but still!
It looks like I'll be bringing some clothes to the Las Vegas Bash after all!

07-28-2005, 10:17 AM
Okay, I apparently gained 3 pounds but I lost another notch on my belt! Woot!
Maybe the best one of all... This morning I realized that I will never go hungry again. (it's a wolves thing)

08-07-2005, 11:28 PM
This weekend at the Beach I discovered that forgot a jacket. So I had to buy a new one. I picked up a 2x and it fit fine. A little roomy but that's okay. Wait a second... The sleeves are a bit long. Let's try the XL. I know, I know, an XL? That’s crazy talk. Hey! This XL is pretty roomy... but the sleeves fit.
So, I had this totally insane idea... What would happen if I try on a Large? oh, it's never going to fit, it won't even zip up. Nah.. I'm too fat for a LARGE.
oh my gawd, she's actually going to try to put on a LARGE jacket??? What, is she nuts? Is she a glutton for punishment?
No! She's the proud owner of a powder blue fleece Long Beach Washington jacket!!! SIZE LARGE

8-11-2005
I am not hording food anymore.

8-14-2005
I just realized that on my cross country flight to Syracuse NY I did not need a seatbelt extender. Not only did I not need one, I actually had wiggle room in my seat.

8-21-2005
Well, my NSV has to do with my hording. I gave 2.5 big black lawn & leaf bags of clothes to the help house. I was going to bring them to the bash, but I felt that they were more needed here. I got rid of them while packing to return to exile.

8-22-2005
back to school, and I fit into the desks so well my tummy doesn't even touch the table! No squishing into the desks!

8-25-2005
I just realized that I didn't have any trouble with the change in altitude or the change in heat this year. For the last 2 years going from temperate Seattle to the extremes of Pocatello were very hard on me. A week after being here I ran up 2 flights of stairs in the COB without being terribly winded or needing my puffer. I also have been handling the heat just fine. Of course, having an AC sure helps...

8-30-2005
I had to go buy a big skirt for my Middle Eastern Folk dance class... Yeah, they don't want us to call it "belly dancing" here, they feel it has "negative connotations." Yeah, what ever, it's belly dancing. I went to several stores trying to find a skirt that would match the requirements, let alone worry about the size thing... So at the 4th and final store I found one, a cocoa dip-dyed skirt. The biggest one was a LARGE, so I wasn't too hopeful. But I was brave and went to try it on. IT FIT! I just bought a size LARGE skirt. Not 2X, not XL, but just LARGE!!!

Mind you, when I bought my Large jacket, I really suspected that the label was wrong, that it had been marked Large in error at the factory, and that it was some sort of cosmic joke on me. Sort of like that pair of size 18 pants that I was able to fit into (didn't buy but that's a different story). I felt that was in error as well. Maybe it wasn't an aberration, maybe it's the truth.

I feel like I have no restriction at all. I still haven't lost any more weight, but I'll take my size shrinking.

My other NSV is a medical one, and has to do with my leg skin graphs. In about 2001 I had a revision of one of my skin graphs from my motorcycle accident. Every day since the revision, I had to wrap my leg in an ACE wrap to give it support so it wouldn't blow-out. I had such bad edema that if I didn't wrap it, it would bulge out quite a bit because of the nature of the graph. I stopped needing to bind my leg a couple of months ago. I simply don't need to any more, no more edema problem.

9/1/2005
My knees don’t rub together when I walk anymore. My belly roll is squishier and hangs a bit lower. This is an NSV because it is proof that I am loosing fat.

9/12/2005
This past weekend was the Bandster Bash in Las Vegas. I had to tighten the airplane seatbelt. Sure, I've lost 3 pounds since 2/29, but I'm trying so hard to not focus on that. Focus on needing to tighten the seat belt.

At the Bash this weekend, I got several pieces of clothes. Okay a whole new wardrobe. When you wear your own clothes over and over, it is really hard to notice any difference. I mean really hard. I've been working my way into several pairs of pants that I haven't been able to wear in years and they are size 22. Yet at the bash, I found size 18 pants that were comfortable. What gives with that? Anyway, I have a few pairs of size 18 that are comphy.

9/15/2005
I've been looking at my body fat % and my current Fat Free Mass. If I don't put on any more muscle mass, and stay current where I am, I only need to lose 55 to 70 pounds, not 70 to 100 pounds. I think that's counts as an NSV. Of course, if I can manage to put on 15 pounds of muscle like NanaHarly (Pat in Virginia) did, then I only need to loose 35 to 50 pounds! Woot! I know what I'm going to focus on!

I was talking to my DH on the phone and I casually crossed my legs. HOLY SH*T!!!! I CROSSED MY LEGS!!!!!

9/17/2005
As of today, I have had 46 NSVs. That amazes me. Today's NSV is that I dropped a .5% in body fat.

9/27/2005
I had an NSV this weekend of a sexual nature. Let's just say that I'm not as bulky....
My forearms and calves have amazing definition.
My low belly is shrinking, and starting to gain some definition.

10/1/2005
My 50th NSV is that I am no longer The Great Crystal Dam in the bathtub. There was room on both sides of my hips in the tub! At this rate I'll have to invest in some rubber duckies...

10/2/2005
Spoke with my mom on the phone last night. She said it has been years since my voice sounded so strong. She said there wasn't any breathiness at all. I guess after years of severe asthma, I'd developed a sort of wheezy -breathy sort of way a speaking.

10/22/05
I had a fitness assessment done yesterday. While my aerobic fitness score wasn't very high, 22 out of a scale of 20-50 (needs work), my over all fitness level fell into the Fair range, and my blood pressure is in the Fit range. (mind you, I've always had good BP, except for the first few weeks I'm back in SE ID due to the altitude and heat change)

10/27/05
I am officially no longer Morbidly Obese, but simply Obese. Today my BMI is 39.6, so I might not even qualify for the surgery, if not for my co-morbidities, which are all under control.

My second NSV for the day is that I have been invited to dance professionally at a Greek restaurant here in town. It will be fun to be able to put on my resume that I'm a Professional Belly Dancer.

11/5/05
All my pants are starting to look like giant clown pants, none of them fit in the butt or thighs anymore. If I didn't have this damn thick waist, I would really be in honest size 18 jeans.

My black leather jacket is going to have to be retired soon. It's ridiculously large on me now. The sleeves alone now hang past my finger-tips and it looks like I could smuggle a medium sized ham in each shoulder. So I tried on my big winter coat, and now it really is my huge winter coat. It's about XX too big. It's fully reversible a suede stadium jacket, with leopard fake fur on the other side. I love this jacket, but next year, some other lucky Bandster gets to love it.

It's important for me that last winter before I was banded I couldn't zip the black leather jacket up. There was a 2-3 inch gap that just wouldn't meet. While the stadium jacket fit, it was pretty snug. Not any more!

11/10/05
Last night I was using my laptop. In my lap. This means that I HAVE A LAP!!!!! Woot!

11/14/05
When I sit on the floor or in a hard chair, I feel the bones in my butt. Not only my tail bones, but other bones (probably my pelvic bones?) as well.

11/17/05
Okay, time to bump the thread. Last night while I was talking on the phone to an old friend from high school I again casually just crossed my legs. Without thinking about it. I know I've done this before, but it's a mind thing I think.

Other NSVs include belly dance stuff. My DH won a few auctions on eBay for me, a couple of B-E-A-U-T-I-F-U-L belts, a gorgeous silk veil and a pair of harem pants. The pants looked impossibly small, even with an elastic waist. I just knew that they were NOT going to fit, but being the glutton for punishment that I am, I attempted to put them on anyway.

They fit! They are too sheer to wear without a skirt, so that will have to be next on my list of things to get. The other victories around dancing are some of the skinny ones are asking me for help, since they cannot get some of the moves quite right.

I'm also getting really excited about dancing at the restaurant. I'll do that once I get home after Thanksgiving, and I complete my costume. I still need a top and a skirt I mean, I just barely broke out of MO, and I'm going to be a fat professional dancer. What am I thinking? I mean, what am I thinking, other than I'm dead sexy and a fine belly dancer.

11/19/05
Okay, Thursday I passed up free donuts, and this weekend I've been busily working in my yard now that I'm home. Raking big fat soggy leaves, clearing flower beds, and the like.

DH is amazed at my level of energy, and so is son. I guess I'm a little amazed too, since for the last several years the only energy I've had at this time of year has been spent trying to breathe or something aerobic like reading or playing video games. I've gotten used to a more active lifestyle in ID with all the walking and PE/dance classes I attend. I routinely walk up several flights of stairs with my heavy book bag, where this time last year I was using a rolling bag, and needing to take the elevator because my asthma was so bad.

12/09/05
Well, tonight I make my semi-professional debute again!

We had our dance department dance review Wednesday night, and pix will be forthcoming. We were great, several people told us that we were the best group on stage, so that was awesome!

I went out on stage, in front of an audience of maybe 300 or 400 people, and I OWNED the stage. I wasn't the slightest bit nervous, and I'm quite amazed at that, believe you me! I made eye contact with many of the audience, and I had the biggest smile on my face the whole time. Not only did I look like I was having a great time, I WAS having a great time!

The next NSV is my costume... my top was a crop tank top that I've added bead work too to make it sparkle. But the important part of that sentence is CROP TOP! Yes, that's right, I was wearing a belly shirt on stage, exposing my ample belly to the public, with my surgery scars clearly visible! And I did it on purpose!

Okay, this next one isn't an NSV, not really, and it properly goes on the "Skinny Bitches" thread, but here it is We had just come off stage after doing our two numbers and we were all still amped up on adrenaline. We were talking about how we had done, bla bla bla. A group of ballet dancers were there, I mean, right there and one of the skinny blond said to another skinny blond the snottiest comment I've heard in a long time. Okay, all the ballet dancers were skinny blonds, but that's beside the point. She said, in a loud voice "well, at least we weren't shaking our Bon-Bons." In the snottiest possible voice mind you. So, I simply said, with sugar in my voice, "well that's because you can't shake your Bon-Bon." And then I smiled so sweetly at her. (then she said that I was probably right, and the group of them walked away) So, I suppose that makes me a fat bitch, but I just decided that I wasn't in the mood to take crap from anyone.

So, the next part of the Belly dancing NSV is that I'll be dancing again tonight at a local restaurant, and yes, I'll be dancing for tips, so Big Paul, you'd better leave now so you get here in time, and yes, you'll probably need to take out a second mortgage

So, finally, I'm doing this when I weigh 240 pound and not waiting until I get closer to goal. I'm doing this at size 22/24 and not when I get to my goal of 12/14

12/22/05

I'm less invisible. Last year at this same time I felt so invisible when walking through the halls at school. Now guys hold the door open for me, and men and women smile more at me. Perhaps they just needed a couple of years to get used to me, or perhaps I am more self assured and confident. Confidence attracts confidence.

This time last year I could not breathe. I was in and out of the hospital and making near daily trips to the ER, having several nebulizer treatments every single day. Since I've been home just about a week, I've used my inhaler much more often than usual of late. I've used it 3 times in a week.

This is a weird NSV, but I finally have doctors seriously trying to figure out why I'm not having the sort of weight loss I should. I guess I had to go on the Supermodel Diet for a month before they would take me seriously.

1/4/6
Today I went skiing for the first time in 5 or 6 years! Woot! It was a lot of fun, and I fit into my ski pants from 5 or 6 years ago. I'm so happy! Okay, this was a MAJOR NSV for the DH too because he went skiing too! Spudboy and I had to talk him into it, but he did it! I'm so proud of him!

I didn't use my puffer once while skiing, but was wicked cold because my gloves weren't good ski gloves. Oh, and I didn't have a water proof jacket either...

So, 3 for the price of one.

1/13/06
I just got back from several days in DC, for a scholarship symposium and job fair. I have a conditional job offer for when I graduate, if I can obtain a security clearance! Woot! That's an NSV, since it would be a major job!

I have a whole string of NSVs, the very most important one is that I went to DC WITHOUT AN INHALER. What's more, I didn't even need it. This is super significant because this time last year, and for several years prior, I couldn't go anywhere without at least 2 inhalers on my person. I had an inhaler in every single piece of clothing that had a pocket. Last year this time I had spent 10 days of the Christmas vacation in hospital, don't know how many trips to the various ERs. I didn't even realize that I didn't have an inhaler until the puddle jumper from Salt Lake to Pokey, AFTER my trip was almost done.

I was constantly being mistaken for a much younger woman, and when I would talk about my son, people assumed I was talking about a baby or a very small boy. Oh if they only knew!

1/18/06
In class yesterday I realized that my belly wasn't even touching the desk in two of my classes!

2/7/06
I had two NSVs this week. One is that I went to a party where I only knew one person. Big deal? Yup, big deal since I am terrified of groups people. It's not like they are spiders or kittens or something like that, but I have a very difficult time with groups of people I don't know, I'm very shy. (yeah, who would believe that?) But I went to the party, and I was charming and talked to everybody. I don't think my husband would have recognized me....

The other NSV is that I've accepted that I'm not going to lose weight. Not until this Cushing's thing has been addressed or resolved. But because I've accepted it, I don't have to stress over it. I don't have to beat myself up any more.

Oh wait, one more NSV, I need to take my watch to the Jewelers to have one of the links removed from the band!

3/5/6
Well, I haven't had that many NSV's lately, or if I have, they have been lost to me.

I need links removed from my beautiful watch, and I can wear more of my rings. I have to stop wearing one of my rings because when my fingers get cold (winters in SE ID are COLD!) it flies off my finger! Woot!

So, 3 NSVs for Feb 06!

2006-09-24T01:09:00.000-07:00

9/29/2005 Turtle Tribe Spokes-model

Posted to LBT today the following. “Live2canoe” had created a thread nominating me to be the leader of the Slow Losers.

“…we need to elect a leader. Someone who will voice our opinion clearly and with wisdom and humor. Our Leader will support us in our efforts and remind us of our NSV's and to not be discouraged.

I nominate - Vinesqueen. I can think of no on here on the board more eloquent and positive in her day to day outlook. (she has no idea about this, by the way - this is my own little invention - but I still think she should be our leader)”

Tuesday was really hard for me. I've been beating myself up because I'm not losing weight. I mean, I'm seriously obsessing over this. I obsessively count calories trying to stay near the 1200 calorie mark, but I allow myself +/- 100 calories before I wig out.

I know that doesn't make sense, none of this does. I feel like a failure. All around us we se so many people "6 months out and I've lot 70 pounds!" People that started with very close to my BMI & height/weight. I see posts from newbies "help! I'm two months out and have only lost 50 pound, how can I lose more?!" and I want to scream, I want to throw things at my monitor. I want to rant and rail at them, tell them to shut the hell up.

I'm very happy for the rabbits amongst us. I celebrate their rapid victories, their fame and glory, but at the same time, I rant and rail. I am envious and jealous, which is know isn't good for my soul, but I cannot help the emotions. I would never want to see any of them the frustrations I feel; I never wish them ill, I only wish some of their success was mine.

On the other board I'm on, I don't get any real support there, I only feel like I get beaten up there... I had a serious PB with peanut butter on toast... The only feed back I got was "oh I never eat peanut butter, bla bla bla" Well, you got your band with a BMI of 32, so SHUT THE HELL UP!

I've been seeing a therapist about my trouble. She has some experience with eating disorders, this being a college campus and all, but no experience with anyone with WLS. *sigh* But she and I decided that I should just forget this band thing. I'm not able to function at school.. I mean I'm seriously obsessing over this and driving myself into depression. Not a healthy place.

She said that I should probably stop going to the on-line support groups that I currently use, and find a group for folks that are not successful with the band. I thought that was probably a good idea. That I should find people who were struggling with the same lack of success I find myself facing.

She also said that I need to stop counting calories. That I need to just back away from the whole weight loss thing right now, since it has taken over my life, and not in a healthy way either. Not being able to study or do my school work is bad bad bad for a college student, especially one on a scholarship with academic requirements...

Well, that was Tuesday afternoon. When I got home from work, there was your "Slow Losers Unite!" thread. I broke down and cried really hard when I saw it. I didn't have to go find the slow losers, they were there waiting for me with their squishy hugs and soft arms. Not to judge me as harshly as I judge myself, but to accept me and to celebrate me like I cannot.

And so, I sit here with tears streaming down my cheeks, salty pain yet salty hope as well.

2006-09-24T01:08:00.000-07:00

9/16/2005 the forest for the trees

Sometimes when we are right in the middle of things it is hard to see. The forest for the trees sort of thing. It can be almost impossible to chart our way if we cannot see the way out of the forest if we are focused on the trees. That said, it is hard to see the general lay of the land if we only look at the trees. Sure, we are intimately familiar with the trees, the texture of the bark, the shape of the leaf or needle, the smell of the loam.

We miss the underbrush when we focus on the trees. The delicate ferns, the sweet huckleberry, the various mosses. We miss the rock formations, the root patterns, the mushrooms, the streams. We miss the bird songs and the way the light filters through the tops of the trees. We are only focused on the trees. We miss the smells, the cool touch of breeze on our skin, the delicate chill of glacier fed winds when we only focus on the trees.

I think plateaus give us a chance to see all these other things. I am trying to view my slow progress this way. It is giving me a chance to savor the small changes that I might otherwise miss in my pell-mell rush to a thinner me.