(Almost) six weeks post-AVS.

And I know NOTHING new really, absolutely nothing. My internist was able to pull the results for two of the three tests the endo ordered (two weeks ago) and they were negative, which was good news but not surprising.

So. Six weeks without the nephrologist calling, two weeks without the endocrinologist calling. I’m a little frustrated. I think tomorrow I’ll be making some phone calls.

~ ~ ~

A couple months ago, I felt so close to having not just some answers but and actual solution. Now I feel like I have nothing, really, other than the knowledge that for at least the last 10 years my body has been malfunctioning and my health care has been grossly mismanaged. And I found that out almost six months ago. So for the last six months, I’ve been walking around with a known but untreated condition.

Yes, I know it could be a lot worse. But what the doctors don’t realize is that it’s bad enough. Some days, the symptoms all add up to one big mess of awfulness: headaches that affect my vision, palpitations, digestive stuff, giant muscle spasms, dizziness. And there’s nothing being done about it. And when those symptoms all come crashing down at once, it’s not like I have the option of checking out and taking it easy. It’s just me around here – there’s nobody else to earn a living and take care of things. And sometimes, it’s overwhelming.

People have a hard time understanding this because I don’t “look sick.” I’m not a complainer and I’ve never been very good at not feeling well – generally I just push myself through it, because damn it, life’s too short to waste resting on a couch or taking a nap. I have places to go and things to do! And sometimes, a body that just won’t cooperate with the mind.

It’s not as if I want to be treated differently because of my illness, not really. I do want people to respect certain things – that I can’t eat out without becoming sicker, for one, and that their “cold” will likely land me in the hospital with a potassium-dropping fever, so please don’t come near me if you’ve got one – and I don’t think that’s asking too much. But yet a day hardly passes that I don’t have to practically beg forgiveness for not participating in something food-related, or be an absolute asshole about somebody’s cold. And it’s usually the person I’m interacting with who acts offended, when I’m the one who has every right to be.

I guess what I’m trying to say is that there’s a whole psychological side to dealing with illness – this one, probably any one – that is completely and totally overlooked by both doctors and society in general. I’m barely able to put that into words, let alone sort out how to deal with it. So I’ll put it this way: think of how truly suckworthy a garden-variety bad day can be when you’re just in a funk for some reason. Then add to that a bunch of physical pain, and powerlessness to do anything about it. And throw in a lot of fear.

Yeah. That’s pretty much how it feels a good part of the time.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s