Monday, July 11, 2011

The rapacious randomness...

One thing I positively loathe about my disease is just how effing random it is. Not just day to day, but hour to hour. It makes planning a nightmare. Sure, I can set dates. That's just a promise. Doesn't mean when the time comes I have the resources to meet that promise.

When I wake up in the morning, I stake stock immediately. How did I wake up? Was it natural or jarring? Was there urgency because I'm not feeling well? Was it difficult to get up because I'm not feeling well? How do I feel emotionally? Am I depressed, anxious, or neutral? How's the temperature? Am I hot or cold? Can I tell where my hands and feet are?

I then have about an hour, two hour window before my body wakes up. Most people start producing cortisol a few hours before they wake up. It builds in your system and just about the time your starving for breakfast is when it peaks. I wake up by adrenaline. I sleep very deeply and have difficulty waking up. But eventually my body realizes it's in distress and I'll wake up with a bolt. That sends me into a rush to the medicine cabinet where I take my prednisone, thyroid med, flornef (another steroid) and anti-nausea med.

I absolutely require the antinausea med because quite frequently my stomach decides to atrophy and just not digest things. When that happens, my meds don't get into my system. I'll get shakey but will feel like I'm moving through molasses. It's difficult for me to think and make decisions. I get really, really cold to where I still need a hot shower on a summer's day to warm up. My hands and feet will feel like ice to the touch (one of my common symptoms as a kid). My heart will beat irregularly and my blood pressure bottoms.

Emotionally, it feels like the world is ending. Which isn't too unreasonable in my mind... Because in terms of physical health, it's completely true. If my body isn't producing cortisol and I don't take my prednisone, I could die. I've got an emergency shot I carry with me at all times in my purse. If I start vomiting or experience trauma (car accident, etc), my adrenal glands are supposed to produce cortisol like crazy. Mine can't. It comes in a shot.

After that two hour window has passed, I take stock again. How am I now? Do I have pain, and if so where's my pain? Can I eat yet? What's safe to eat? With food, I can generally tell by smell and by thought: if my stomach flip-flops, that's a no. Not no doesn't always mean yes, however. I can still get sick on something that sounded like a good idea at the time. That can turn a morning into an afternoon really fast.

If I'm somewhat bodily stable, meaning I've eaten, pills are in my system and working and my pain isn't slowing me down, I can then make or keep plans of the day. I usually do things short notice, as I don't like broken promises on my watch. Doctors appointments are another story and I'll push as much as I can, but I always make afternoon appointments to give me that wiggle room for self-maintenance.

I watch the weather religiously, as I know storms and pressure changes lay me out. I get migraines that turn me into a zombie. And/or I get body pain that makes me feel like my body is filled with sand, or hand and foot pain that feels like lightning and burning.

I try to schedule appointments around the weather, but I'm not always so fortunate. This spring and summer monsoon in Denver has kicked my @$$ I've become isolated and out of touch with my local, in-real-life friends, and that's miserable to me. I'm partially an introvert, but I'm an extrovert too. I love small gatherings of arm-chair philosophists and political advocates. Facebook helps, but it's no substitute for real people.

I'm literally a fair-weather friend: it the weather isn't good, I can't be there. People think they understand, but so often they don't get that I feel and before during and after the storms have passed. Most folks tend to think along the lines that I'm made out of salt: as long as it's not raining I shouldn't melt, right. Not quite, unfortunately. Those red and blue fronts that sweep through an area, the switch-out of high and low pressure systems... I feel all that physically. Its the roller-coaster of randomness I have to ride.

It reminds me of the Police song:

First to fall over when the atmosphere is less than perfect
Your sensibilities are shaken by the slightest defect
You get so dizzy you've been walking in a straight line
You live you life like a canary in a coal mine
Canary in a coal mine...

What else can I do? It's my reality. I'm working to make it better, but in the meantime, it's sill a wild ride.

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