beating the "what ifs"

Today is just a crappy day for me so far, for a variety of reasons. But part of it I've done to myself.

I had one severe blood disease last winter that has led to another. I'm good with the first one so far, but I found an article about it this morning and stupidly read it.

I'm still on meds for it, but I'm being tapered off, and will be off completely by mid-September. According to this article, it turns out that it can come back once you get off the meds.

My hematologist told me that it usually recurs, but not for 10 years or so. That's still not terrific odds, but now I'm all freaked out about getting it again a lot sooner.

The disease it led to I am still learning how to deal with. There isn't a lot out there about it, as it's fairly rare, but I'll be on meds for life. I've had to radically alter my diet and make other lifestyle changes because of it. The meds will keep me from the worst symptoms, but I'm having others that aren't going away. In one thing I read, it said the disease can lead to vision loss and blindness.

Well, I'm having problems with my eyesight, so now I'm all freaked out about THAT. I mean, it's probably a worst-case scenario, but I can't get over the hump of the "what-ifs." (Yes, I've been told repeatedly that I catastrophize ). It could just be the issues of middle age, or it could be that I need new glasses, as I haven't seen an eye doc in a couple of years. But my mind jumps straight to "OMG, what if I'm going blind?"

Anybody got any helpful hints for not making huge jumps over the logical conclusion bridge?

Candy

Not too sure what to advise, except try to take it one day at a time, live for the present. There is no point worrying about something that might never happen. Either that would drive you miserable and/or you would waste precious time by spoiling the present. I also know it's easier said then done but... one can only try!

What might also help calm these irrational or unjustified fears is to counteract them with concrete/objective facts or knowledge. For instance, can you not have it checked to see whether it is simply your eyesight? If you *know* what is happening, you might be better able to deal with it. Plus, that would reassure you.

That would be easy, yes, and that's my first choice except that I can't afford the copay for the dr. visit.

Oh crap... Are there any online resources or support groups maybe (usually hospitals havea list)?

Yeah, I've posted a question to the ONE online forum for the disease (did I say it's really, really rare?!). We'll see what turns up.

If it gets much worse, I'll hit up my sister for the dr. fees.

CandyBear, do you have secondary aplastic anemia? and do you know what caused it? it isn't genetic, is it?

if it was caused by something, externally, were tests run to find out what it was that did precipitate the secondary aplastic anemia? i realize that you did almost died. but the better way to look at that is to quit thinking about dying and start thinking about living........

i suggest that you read the positive articles about the recovery rates and if it isn't genetic, your recovery is pretty much there.

if i read all of the articles, from the neurological associations, that say silicone doesn't affect a person's body....i could get very depressed.

instead, i research everything that i can find on what will help boost my immune system.

obsessing upon the negative doesn't help me at all. and i already know my prognosis.

but i'm going to continue to look at every day positively and drop to my knees, thanking my higher power, that i have this day!!

good luck on the anxiety..........p

I have (or had, my counts have been good for a while) primary aplastic anemia. It seems to have gone away, but it caused me to develop antiphospholipid syndrome, which might have caused me to develop lupus -- jury's still out on that one.

The aplastic anemia was caused by my psych meds, they think, in particular the Lamictal. They cold-turkeyed me off all of them in the hospital and then only gave me back Effexor and Risperdal, and those at half the doses I'd been at.

APS is a clotting disorder and can cause kidney failure, strokes, heart attacks, blindness and all kinds of goodies.

I'm too bummed out today to try thinking positive.



Candy

hmmmmmmmmmmmmmm...you do have a lot ahead of you.........p

I can get freaked out by "what ifs" and worrying about what might happen, too. And I often read articles or see stuff on TV I know I shouldn't, but I read them because I'm hoping they'll say things that ease my fears and give me good news. When that doesn't happen, it can make things worse.

I do agree that it can help to see a doctor if and when you can, but aside from that, I would say to try to get your mind off of it. I know, easier said than done. But if you can focus on a movie or a book, or maybe some crafts, for instance, it will ease your tension.