Tuesday, November 3, 2009

Momentum: Losing It & Getting It Back

I've lost momentum somewhere. 

I suspect it's probably normal, especially nearly 2.5 years into a mystery illness. 

I had a recheck with my cardiologist last week. No real update, other than that he increased my dosage of Florinef since it seems to be helping with my dizziness/fainting. 

I really like Dr. M. But when he tried to be reassuring and told me, "Most people that have these kinds of symptoms get better within a few years. It just seems to go away," I questioned him about that claim.

Turns out, he's assuming that patients are better when they stop coming to his office. They just kind of fade away, he says. 

I smiled and nodded, because he's a nice man and I didn't want to puncture his balloon. But while I'm sure some patients do, miraculously, suddenly get better on their own, from the blogs I read and the folks I've exchanged email with, I fear that more common is that people stop going back to doctors who don't know what's wrong with them or have any way to treat it. 

Heck, I've done it myself with my gastroenterologist and with physical therapists. 

And honestly, lately my search for a diagnosis and/or treatment plan seems futile. The doctors all agree that something is wrong with me -- no one has accused me of malingering or that it's "all in my head" -- but they're not at all sure exactly what it is. And my treatment consists of trying to manage my symptoms, mostly with narcotic pain relievers since my stomach can't tolerate NSAIDs. 

Although the cardiologist told me to come back in six months for yet another re-check, I don't think I will. What's the point? There's nothing he's found wrong with my heart other than that it beats faster than it should. And that's reassuring, to a point.

But what's the point in going back, paying yet another co-pay and costing my insurance company even more money? My theory is that doctors never really say, "This is as good as it's going to get and there's nothing else I can do." So they keep telling me to come back, usually at longer and longer intervals, "just for a re-check." 

I assume it's partly a CYA thing that the don't want to have missed something and that's why they keep wanting a patient to return. I don't think it's just a revenue thing, but that's always possible too. 

Meanwhile, I lost momentum here on the blog too. And it's weird -- I kept wanting to get back to posting but in addition to the series of viruses I had that kept me laid low, the longer it had been since I'd posted, the harder it was to actually start writing again. I even ducked emails from Duncan Cross reminding me (and other past contributors) of deadlines for the Patients For A Moment blog carnivals. I'm sort of grateful to NaBloPoMo since it was incentive to jump back in and make a commitment to do so regularly. Otherwise, I don't know. I might have ended up letting the blog go dark. :-/

And I've kind of been that way about a lot of things. I can't remember the last time I was caught up on more than a handful of the blogs I (try to) follow. I wouldn't blame some of my email penpals for giving up on me entirely since I've been horrible about keeping in touch. The same goes for way too many of my local friends. And the kind folks who have left me comments here on my blog.

It's just hard to keep on top of everything when you have so little energy. Sometimes I feel like I'm drowning because there's so much I want to do and need to do, and I just can't keep up.  So the bare minimum gets done to keep my head above water.

Sigh. This is turning into more of a whine session than I intended. Sorry. :-) I probably need to talk to my doctor about tweaking my anti-depressants again since I'm so melancholy. Although I think simply getting over these bugs would go along way toward helping my mood. But at this point, it's hard to tell what's a virus/acute illness and when it turns into my new normal. 

Thanks for reading. :-)



Shiri said...

Hey... I've been thinking about you. I can very much relate to what you're saying here. What is the point in going back if they're going to tell you again what they tell you now, that they don't know? When that neuro said to me that "sometimes brains just do this" it was almost reassuring. He doesn't know, he is admitting he doesn't know, and I need to get used to this being the case. Its also terribly depressing at the same time.

Btw, the heart thing. They've tentatively diagnosed me with POTS and given me Mestinon. I think Florinef was an option but that the problem wasn't about my BP. I'm hopeful, but, you know...

Sometimes it gets too draining and it seems like there is no light in the tunnel. I know, I definitely know (coming up on 6 years!), but the only way things can change is if you push. It shouldn't be our responsibility but it is. Just writing this makes me feel drained, but I guess I just wanted you to know I'm thinking about you.

Hope you're doing ok.

p1nkg0dess said...

Oh the "if you're not complaining you're better" claim. Doctors are definitely the worst for this. I eventually stopped going to my PCP a few years ago bc it seemed like taking so much blood would worsen fatigue and spending time and energy on so many appointments was not helpful. She was annoyed when I came back months later for another issue and found out I was still experiencing symptoms. There's a point where you just try to live your life as best you can, and often doctors assume that everything is better. I have found the same thing with friends and family though too, that if I am not talking about my symptoms (which generally I am not) they assume they are better. It is difficult to strike a balance between conveying limitations, working to overcome them, and living without dwelling on illness all of the time.