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 http://www.mayoclinic.com/health/low-potassium/AN01143
Signs and symptoms of low potassium may include:
- Muscle cramps
- 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?