So I'm sure some of you have noticed my tweets about today's one thing. But I want to explain a bit, in the hopes that writing it down will help me get a handle on how to live with this.
I should start with a bit of medical history here for those who aren't familiar. I've been combing through old LJ entries to try to find dates for some of this stuff, but haven't yet. I'll probably update this and repost when I do.
I should note that I've had intermittent insomnia since I was a teenager; 6 hours is a good/normal night of sleep, 8 hours is I'm overly exhausted. Right now, I usually sleep 10+ hours/day and that's on adderall.
In college I was diagnosed with arthritis from a hairline fracture in my right hip (I have a small a bone spur in the socket; they can remove the spur but it'll probably grow back) and repetitive stress in my shoulders because "the connection between your shoulder blades and ribcage is too short". I also had TMJ by then thanks to braces and shifting my jaw about 2" to reduce the overbite (I was in braces from 2nd to 12th grades).
So I've lived with chronic pain for over 20 years now, my pain tolerance is ludicrously high for my hip, shoulders, and jaw. The spoon theory has been part of my life for over two decades, and with a few exceptions I've been active and busy in spite of the constant pain.
Ovarian Cysts started showing up while I was in grad school?; the first time I noticed one it was the size of a "large lemon", and the pain was so bad I was having dry heaves and crying so I went to the ER. They did an ultrasound and said you have a cyst, but it's not fibrous so have some pain meds. Unfortunately changing birth control through every type imaginable did nothing to control them, and my cycle ran 10-14 days between periods. No fun, lots of pain, Doctors will not remove the left ovary which is the site of every cyst. But since they burst on their own and are not cancerous, the ovary stays. They did finally do an endometrial ablation (burning off the surface of my uterus) to at least reduce the bleeding to a trickle. Another increase in my ability to tolerate pain occurred while I struggled to cope with this.
Throughout College, Grad School, and life post academia I had frequent colds, sinus and ear infections and occasional bronchitis. But since I was always busy working and enjoying life that wasn't a surprise - when you work in a NOC with 20 other people in a 15x20' room, or do theatre tech work where no-one takes sick time, everyone gets sick and illnesses are passed around like candy.
Then I was diagnosed with hypothyroidism in 2005? 2006? and put on synthroid by my Doctor. It worked for a while: I wasn't so frustrated and angry; I wasn't gaining weight in spite of eating little food, all of it healthy, and exercising a lot; I started to feel like myself again.
But synthroid wasn't the right treatment as I found out in 2007 - synthroid is a form of T4, which normal bodies break down into T3, or in times of famine Anti-T3 (which blocks the T3 sites to slow down metabolism severly) my body was turning T4 into Anti-T3. I still managed to have an active life, and while I felt tired it wasn't so bad that I stopped doing things.
In 2006 I moved to CA, in part for the weather. The constant colds/sinus infections, and the fact that the cold and damp in MD severely aggravated my pain made LA a good landing point. There were friends here, good clubs (dancing has been keeping me sane since I was a teenager), and my pain dropped from a 6 on a good day to 2 most days. I could exercise more, I was more active, I went out or swam or hit the bowflex almost daily.
Still, I started to feel run down and tired all the time again. The new Doctor who diagnosed the incorrect treatment for my thyroid condition (Hashimoto's Thyroid) put me on straight T3. My anti-T3 level was 5x the norm, and my T3 level was about 1/10th of normal on synthroid. Switching to T3 worked wonderfully. Once again, the real me was enjoying her life rather than slogging through her days exhausted and cranky.
When I was diagnosed with Hashimoto's I was also told I have a depressed adrenal/immune system and a chronic candidia infection in my bloodstream. I've been on fluconazole intermittently from then until January along with Nystatin. Fluconazole no longer works; I seem to have developed an -azole resistant strain of Candidia now.
I was also diagnosed with Chronic Fatigue Syndrome (CFS) and Fibromyalgia in 2006/2007. We started treating those as well, and it helped. I mostly stopped worrying about whether I had enough spoons for things for two years, and I still only use spoons for keeping a handle on my pain levels, and have no idea how to use it to keep track of constant exhaustion that's this bad.
Then in the summer of 2008 I started to go downhill again. The Doctor thought it was stress because my separation was going badly and fucking up my finances majorly plus I was working a lot of OT to help cover bills, many of which were for a house I didn't live in in MD. He added in clonazepam temporarily to help me relax and sleep so my body worked better. That helped for a few months, then my ex did a few things that made it impossible for me to afford some of my medications for months. T3 and hormones I didn't synthesize properly I kept taking but I couldn't afford the other stuff to control my conditions.
A downward spiral ensued, including increased pain, sleep issues, rebounding (and now apparently -azole resistant) candidia, and a totally new symptom - what I call mind blanks. This is not the fogginess that some people describe with Fibromyalgia and CFS - I have that too, but I'm aware of it and do something that doesn't require serious thought or slow down at work or whatever. This is more like a hard drive with problems - either the data's there but I can't retrieve it, or it doesn't write from RAM to the disk, or I get the blue screen of death. We've been trying to diagnose the cause of these memory problems since November 2008? Nothing so far, just possible causes eliminated. I also have the fogginess and numbness in my extremities other Fibromyalgia patients describe, but I'd never experienced major problems with them with any frequency until late 2008/2009. I'm doing my best to re-learn how to do basic tasks without injuring myself (cooking, cutting veggies or fabric, using the sewing machine or even hand sewing) and on good days I can do that. I can't multi-task anymore (ie: watch video and hand sew, listen to tv and cook) though or I'll burn myself or sew into my hand or slice a finger open, which means everything takes longer. Again, this is difficult but something I am getting better with.
But the last few problems I'm having seem insurmountable right now:
Major fatigue. As in sleeping 14-16 hours a day during the summer/fall of 09. As in slicing 1/2 a cucumber and some cheese makes me out of breath and dripping with sweat. As in if I take a shower today then I have no energy to leave the apartment or cook food. This has nothing to do with my pain spoons; this has everything to do with whatever is broken in my body slowing me down to the point that I fall asleep on couches at the club, that I make T carry me up the stairs at Malediction so what energy I have can be used to dance, and that I usually get "one thing a day" as in one physical activity. I can cook a real meal, but I can't load the dishwasher or clean up the kitchen. I can go to the grocery store, but then I have no energy left to cook. Walking 4 blocks to the bus leaves me panting and dizzy and by the time I get to the Dr's office my heartrate is still 109 after 20 mins on the bus and another 30 in the waiting room. I can work out or go dancing, but that usually puts me at 0 or even -1 thing the next day, however if I don't do those then my muscles will atrophy and I'll probably never get back to a semblance of normal. Anyone who's known me for more than a year knows how active I've always been; yes, I used a cane to walk when needed; yes, I took it easy when I hurt; but this exhaustion is not me. My T3 levels, etc are normal, and I'm even on adderall to help with the fatigue - I'm not sleeping 16 hours a day with that, but I'm also still exhausted after one physical task most of the time.
Mind blanks - described above; actual examples - three checks written wrong to my former employer when I was taking care of taxes (not the wrong amount, I filled the checks out totally wrong); rent check for the wrong amount sent to landlord this month; inability to keep track of paperwork, projects, etc; no longer able to listen to music and read at the same time (let alone watch videos which I've been doing while working since I was 12?) losing anywhere from a few hours to ten days of what I've done except for going back and reading my twitter feeds, asking friends, etc. Not being able to find my own apartment or my Doctors office without getting lost (Dr. is a straight shot down the street).
Lyrica side effects that continue nearly two months after I took two 25mg doses. Smells and scents are amped through the roof - cooking food makes me nauseous, the smells at the grocery store or a restaurant are enough to send me running outside so I don't puke, eating is a battle of will against my body. Also, constantly ringing ears (right is usually louder than left), increased skin sensitivity (BPAL scents I loved a few months ago make my skin hot, red, bumpy), intermittent blurred vision and vertigo.
Just figure out WTF is wrong, find a treatment that works for me, and at least give me back some of my energy and normal sense reactions. I miss being able to eat a whole meal in one sitting (as opposed to picking for hours at a plate), I miss being able to drive or ride my motorcycle, I miss having enough energy to cook dinner, I miss being able to walk up a set of stairs. I get that I'm disabled now, and that some of these problems are likely permanent, but this constant exhaustion, elevated heartrate after a simple task, not being able to do things that are important to me is driving me up a wall. I'm 43 years old; my grandmother at 89? can walk farther than I can; this is not right.
And that's the wrap of one of the things I've been trying to talk about but not getting clear. Some of it is likely TMI or falls under the category of 'Things we do not talk about', so thanks for reading.
Feedback is greatly appreciated; I'd especially love memories of some of the crazy busy weekends, club/dance nights, and of course Pennsic, cons, and roller coaster trips if you have any. Remind me who I am so I can better explain to the doctors why this is so not right.
note: I just updated the post time on this; I have had this in a private entry for a few days while working on it, I think the final version was posted at the time I 1st saved it, because it seems no-one saw the entry.