Platypus Journey

Thursday, April 12, 2007

4am... sleep eludes

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....

Sunday, April 08, 2007

Weaning is hard!

"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.

Monday, April 02, 2007

Spring Cleaning

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.

Tuesday, March 20, 2007

gone to long...

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!


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


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

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.



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?

Friday, March 09, 2007

Sea Stacks

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....

Monday, March 05, 2007

Mixle, sad little Mixle

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.

Monday, February 26, 2007

New Toys...

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!