Friday, January 31, 2014

Time, time, time... See what has become of me

(Quick Thank Yous to Steve for picking up my Rxs, & Bianca - who called for an ambulance for me in Colorado while she's in Kansas!)

I always prefered the Bangle's version over Simon & Garfunkle. But when I looked around at my possibilities, I was easy to please. I enjoyed so much, the landscape was WONDEROUS. Even now, sick, I still enjoy so much. I live in my head, and (with the help of much therapy and pain control) my mind, onceagain, is an awesome place to be. No one really understands hoe soul-stealing pain can be, until they've lived it. God knows I thought I did. I had two trick knees, kidney stones... Black-out, seriously-respected-by-doctors levels of pain. And it was. 

But then it got worse.

The problem with pain is that it is DESIGNED to be attention grabbing and holding by the very functions on the body. Depression with pain is UNAVOIDABLE. Not because of a personal lack of anything.... Rather, the same chemicals that make our mood feel happy are also the same chemicals used by the body to HEAL. When those stores run out because of a constant drain of pain, NO ONE could even possibly be immune to a decline in mood. THINKING CANNOT FIX A FUNDAMENTAL LACK OF BRAIN CHEMICALS. The patient is not to blame. Blame the disease.

After I came back from the hospital with an Adrenal Crisis yesterday, I happened to spot a photo of myself when I was 29, and near the point of death. And I was like, no WONDER people didn't think I looked sick. I looked stunning!!! 35 pounds underweight, shoulda been in a coma, and I look like a million bucks.

So OF COURSE people don't believe when I say I hurt or my feet are on fire, or I can't feel my hands or hold things. Well, they can see that I drop things and that half of my fingers are limp... they can hear the swears, and can see my "pain wrinkles" come & go (involuntary facial cringing from pain). But that's not obvious, and certainly not noticeable if you don't know what my "normal" looks like.

And bless, there's a LITANY of symptoms!!! I had a medical screening today for a very basic life insurance policy, and the poor girl was 30 minutes over time because of everything I had to explain!

The autoimmune hypophysitis causes the body's master gland to not function completely. That causes vision problems (damage to the optic nerve that cannot be corrected with eyewear), chronic migraines (because my immune system is literally trying to eat part of my brain), hypoadrenalism (deadly + over 100 of it's own symptoms), hypothyroidism (deadly, also with multiple other symptoms), hypogonadism (lack of female hormones & all associated symptoms). Add to that MRSA from the bionic device surgery for the migraines,  Sjogren's Syndrome, small fiber neuropathy as a result of the MRSA (body-wide nerve damage, internal & skin) and something yet to be determined that is rapidly destroying my teeth like my orthodontic surgeon has never seen before. 

The migraines mean I cannot distract myself from pain and also mean severe episodic nausea with paralysis of my stomach which can cause an inability to get medications in my system in a timely matter (they just sit in my stomach & can't pass into the small intestines to be absorbed). This complicates EVERYTHING.

I cannot go any higher on opioid painkillers because I start sleepwalking. The gaba class of pain medication causes pitting edema, which is dangerous to my heart. Any medications affecting the salt channels don't work because I'm on prednisone which is supposed to keep those levels flat & steady, but for some reason, I'm hypokalemic and have unexplained rapid tooth decay, and the calcium gets deposited in my kidneys as calcium oxalate stones (last two were 7mm each, in 2012). 

I cannot go higher on namenda. I cannot use muscle relaxants (I fall asleep with more than 0.5mg of benzodiazapam). I am extremely sensitive to stimulants, some which have the opposite effect (anything from the cocaine family and caffeine make me sleepy). Anything effecting norepinephrine makes my heart tachycardic & I vomit that night & the day after.  

I cannot use beta-blockers or anything that could potentially lower my BP. I'm usually 110/70, since forever, but the issue is, I constantly run the risk of an Adrenal Crisis where my BP bottoms out so my blood stops flowing and my heart grinds to a halt. I also feel terribly, terribly cold, cannot get warm no matter how many blankets you pile on me, and if I fall asleep, I could potentially not wake up (coma, then death).

When you feel the worst you've ever felt in your life and it's been that way for years, when a doctor says, "We need you on medication yesterday. I don't know how you're not in a coma!" you get really serious, really fast. Everything changes and your life is turned into a situation you didn't know could exist. What you though was solid ground is air, and you're falling still, with no idea where the ground and that sudden, final stop is.

So it goes without saying, I'm a little freaked out, because I was doing SO well! I was becoming reliable and dependable again! Symptoms were managed or manageable! It wasn't perfect by a long shot, but it was workable. I was happier and more grateful than I'd been in years! 

But oh, what was waiting to pounce.... So now I feel like I'm back at square one: a life-screwing set of symptoms of unknown origin are creating not just issues but life-threatening issues, and no doctor wants a "problem" case like mine, even though they consider me, personally, not a problem.

If this were my fault, I could atone! I could change my behavior, I'd have the ability to do something about it. But this is not something I'm doing of my will. I wish it was, just to be able to influence it! I do everything I possibly can, yet I'm still losing ground. 

And while, yes, this frustrates me and saddens me, I also cannot deny how much compassion, wisdom, understanding, and love for my fellow humans this condition has given me. I have seen horrors, and I have seen real, living, breathing angels-on-earth in humans and animals alike. There is something to be said for truly understanding how precious life and a functioning body are, and how quickly, easily it can all be lost, no fault of anyone.

When I was able to start working again, I was so damn grateful, nothing was ever a problem, even when everyone around me was losing their cool. I'd been through so much worse. Like the combat medic who was my ER RN in Seattle said when I asked him how he was so incredible compared to all the other nurses, he replied simply, "No one is shooting at me." 

When my symptoms are raging, it's like I'm being shot at. I know any second it's going to be massive pain, or worse, and I've got to try to think and keep myself alive and manage whatever life is throwing at me when my disease decided to flare. It makes a girl not at her best, to say the least. And then there's the effect on my mood, which kills my ability to see opportunity & hope. My mind is fixated on problem solving, not flights of fancy. Pain roots my brain in my body, precicely when it is most miserable to be there.

So symptom control is everything to me. I don't dare use ANY substances recreationally, even legal, socially accepted ones, because there may be a point when I need it as a medicine, so I don't want to build a tolerance at all... I'm at the end of options, just waiting for a change: a new drug clearing the FDA, a new experimental program, ANYTHING that could mean getting my ability to work and live normally again. Hell, I'd like to be able to eat without pain! I've lost 25 lbs in 2 months from the pain diet. When food is FAR more painful than hunger, starving acutally feels better than eating. It's only when hunger gets as painful as eating that I'll take a cracker or two and a few sips of liquid. 

Point is, I'm scared, and have pleanty reason to be. This is not an unreasonable nor unwise emotional state. I need to be vigilant and wary, but this too, comes with a price on my health. There's no winning, rather there's a choice of how I want to lose.

And this post is long enough.... so I'll leave it at that. Thanks for letting me vent ;)

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