Feel like shit, but I’m okay (right now).

As sick as I am feeling right now, it’s comforting when my vital signs are okay.

Being chronically ill, we become experts on learning our personal degrees of sick–as bad as I feel, I know what much worse feels like, and I remind myself as bad as I feel right now, I’ve been in worst spots in the past.

For someone chronically ill, there’s basically four stages of living: stage four: need to be hospitalized, stage 3: at home but too sick to do anything productive, stage 2: at home but able to run some errands , and then stage 1: finally, on the best days, able to go out for a few hours, and maybe even an entire day, though still in pain.

(There’s never an ‘all’s good in the clear’ kind of day. That life ended years ago.)

The last few weeks I’ve fluctuated in between the top three categories, mostly in stage 3.

I’ve been through a lot over the years, but what’s scary right now, is the massive amount of medications I’m on–I’m on heavy heavy heavy duty antibiotics, for a few different reasons.

(I don’t even want to say how much, because most people wouldn’t understand. They’d just be stone cold shocked at what I’m currently putting into my body.)

Unfortunately, part of the reason I need so much, is because I’ve been doing antibiotics for the last ten years, and now I’ve developed resistance.

That’s why it’s such a scary time for me. To feel this sick while on this many drugs is not a good sign. Usually, I should be bouncing back by now.

When I’ve had health crises in the last, I usually do a few months of IV antibiotics straight before I can ease up on them. The problem is now, I’m very far away from home so if I need a refill it’s logistically much more difficult.

And for me to be feeling this bad on this many drugs, means I’m going to need an even longer course than my normal (or worse, that they’re not working so good and I might be headed towards a really really bad storm.)

At least if my blood pressure is stable, then I’m holding my own under all of this right now. If my blood pressure starts to drop, then I’m in big trouble. My sister whose a nurse looked up some good antibiotics for resistance that are available here in Canada, which is good, the problem is getting my hands on them when my case is so complicated.

I scare doctors away on a good day “I’m sorry, but I just don’t feel like I’m the right doctor for you.” When I’m in the midst of a crisis, then they really freak out.

With new doctors, usually the way I have to ‘prove’ to them I’m as sick as I say I am, is by getting to the point I’m almost dead. That’s where I’ve been really spoiled by Dr. Sherman for so many years now–because he’s seen with his own eyes my looking healthy/having normal test results, then proving I’m super ill, he now collaborates with me closely and we jump in sooner so my body doesn’t have to go through the hells it once had too.

But I had to earn it. And it was painful, and this kind of relationship is built up over many years.

And now, I don’t think I have it in me to live through another major health crisis. I’ve just been sick too long. But that’s what I think doctors are going to need to see here in Ottawa, there going to need to see ‘the show’ before they jump in to help me. They’re going to need the blood pressure failing and the positive blood culture even though I look completely healthy before they believe me.

And that,

is very very scary. Too scary.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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