3:27am March 4, 2014

And about that fragility.

I’ve been living the last several years aware of how fragile my life had gotten, and yet not aware that I would ever find out why. I had figured that whatever I had, it was not something that would show up on a blood test or be treatable by medication. When my doctor ordered a blood cortisol test, I was more puzzled, than anything.

But I’d known something was wrong. I’d known because whenever I was sick enough to put me in the hospital, I also became so sick that things like typing or rolling over in bed became monumental efforts. There were times I insisted to the hospitalists that I was in danger, and they basically ignored me. At the time I thought it was entirely the neuromuscular problem – for instance, that repeated vomiting meant that I’d become too weak to move, that I’d then have trouble breathing. And it was partly that. But I now see it was also the adrenal insufficiency.

And I knew there was something beyond the neuromuscular condition but I’d already figured they’d never figure it out.

I hate the way most doctors assume that if you have a wide variety of symptoms, then they all have to be accountable to one condition. Like I once had a doctor tell me, “You can’t have myasthenia. You have general fatigue, not specific muscle weakness. I’m confident that you won’t respond to the trial of Mestinon.” Well I had both general fatigue and specific muscle weakness, and I figured they were from different causes, even. But he assumed that if you have one, you don’t have the other. He also assumed that I would tell him every symptom I have, even though I only see him as part of a headache clinic.

This is a common doctor thing. I mean, my doctors know I have multiple medical conditions, and they must know that most disabled people do, that having just one condition is much rarer. And yet they still try to think only in terms of one condition at a time, and if every symptom can’t be explained by that condition, they assume you don’t have it. If someone had discovered the adrenal insufficiency first, I am confident that one doctor would have said “But you can’t have adrenal insufficiency, you have specific muscle weakness, not general fatigue.”

But I knew something had to be wrong, and dangerously so. Because I knew that when I got sick, I had trouble doing things that even many people who are actively in the process of dying, can still do. And I could feel, many times over, that any amount of physical or emotional stress led to something outright dangerous.

For instance, a couple years ago I attended an opening at an art gallery. It wore me out badly because of the stress of being poked and prodded by hundreds of drunk people. And before I could recover from that, I participated in an online debate with people who wanted the legal right to kill their disabled children. At the end of the debate, my oxygen level plummeted, I became so weak that I needed my bipap to assist my breathing, and most worrying of all, I could feel the presence of death in the room.

When I say feel the presence of death in the room, I don’t mean that I was absolutely going to die. Obviously I wasn’t. But there are times when I can “see” death hanging around someone, including me. It’s like the air becomes filled with light, and there’s a sense of patient watchfulness. It’s happened to me several times when sick enough to be in the hospital, and other times when I wasn’t hospitalized but was very sick anyway. Death hanging around means that it’s close enough for you to feel its gravitational pull, the pull that says “It’s so much work to keep your body going, why don’t you just lie down and rest, and everything will be okay?” At a certain point, you can’t fight it, and you get closer. If you get better in time, you will begin to have the strength to fight it and pull away. But it also has an event horizon, and once you get that close, there’s no going back.

I’ve felt death in the room many times over the last several years. Always during an illness or after a stressful event that wiped me out enough to make things like breathing and running my body difficult. But I didn’t tell most people, because it’s hard to talk about things like that. I told my closest friends, some of whom could pick up on it anyway. But other people I usually didn’t tell, because how do you even talk about that?

And I couldn’t shake the feeling that my body was too fragile, so fragile something could easily happen to me long before we knew what was wrong with it. I assumed, for some reason, that lab tests would never show anything, no matter how extreme my symptoms got.

I still can’t quite believe that they found something and that it’s treatable. And I can’t believe how sturdy and robust I feel, like the fragility is going away. I was worried about being on a steroid for the rest of my life, but now I don’t mind. I mean it’s possible we’ll find what’s wrong with my pituitary gland, fix it, and that will be that. But they also said my adrenal glands have been out of practice so long that even when flooded with ACTH they don’t produce as much cortisol as they ought to. So even if we fix my pituitary gland, there’s still a chance I’ll have to take these meds. But now that I know what these meds can do for me, I’m okay with that, despite the risks.

Because I don’t ever want to go back to being so fragile that a stressful weekend can affect my ability to breathe. Apparently it’s possible with adrenal insufficiency to get slightly more steroids at times they’re going to be putting a strain on your body, like surgery and the like. I’ll need to talk to a doctor.

This all just seems like it couldn’t possibly be real, that the fragility is finally over, or on its way to being over, that I won’t die just because I got sick or sufficiently stressed out. I’ve lived so long knowing my life was in danger, but not believing that anyone would believe me in the absence of any hard evidence at all.

But despite how fragile I’ve felt over the years, I’m now realizing that I must have been really strong. Because every single time that fragility brought death into the room, I fought it off and pulled through until I could finally get treatment. I never went all the way into adrenal crisis to the point of no return. And now that we know, hopefully I never will.

It still feels like it’s a dream, that I’ll wake up and everything will be back how it used to be. The change I had with Mestinon was amazing, then the feeding tube, and now this. A year ago at this time my health was spiraling downward so fast my friends were afraid I was going to die. Now it’s doing the opposite. For the first time in my life my health is getting better. It’s so strange.

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