20 Years of a Lie?

Almost exactly twenty years ago I was faced with a diagnosis of rheumatoid arthritis. Lots of meds. Lots of frustration. Years of steroids left me with osteopenia, treated that a decade ago, now need to check the status again. (Which reminds me that I need to call the facility that was supposed to contact me two weeks ago. In typical medical fashion.) I can't remember how many different medicines I tried. How many side effects I found--I'm looking at you, methotrexate.

But apparently it was for naught, and the times I felt good were from the steroids and times when my body just naturally calmed down. 

I saw a new rheumatologist last month, since my one and only other rheumie left last year. I'd been getting gradually worse joint and tendon pain after many years of remission of what I thought was RA. But apparently it wasn't RA. The new doc checked me out pretty well but found no actual swelling. We talked for a while and she dubbed it: hypermobility, barring other diagnoses. Specifically "hypermobility spectrum disorder", but we were checking for a battery of tests to come back. They mostly came back negative. It isn't RA. It isn't autoimmune at all. It's... Something. 

Now, I'm hoping that she doesn't brush me off and say to just deal with it. I've been "dealing with it" for all of my life. As in, at least as long as I can remember. As long as my mother can remember. And I'm sick of hurting. I'm sick of having my shoulder just drop out of its socket. My ankles, and hips, and fingers going on strike randomly. After consulting Dr. Google, there's so many symptoms that make sense with the HSD--including the joint issues, IBS, and menstrual issues. Fun fun! At least that last one was ousted and is no longer a problem. Now THAT was an awesome surgery for SO many reasons.

I see her again next week and I'm both looking forward to and dreading meeting up again. I don't know if I'm going to be dismissed as a hypochondriac (could be--but unlikely in this instance) or once again be told to lose weight, get more sleep, drink more water, have less stress. Yeah. Working on that. Why did I still have these problems as a kid? 

For two decades I thought my joints were eating themselves from the inside so I was on, quite literally, chemotherapy for YEARS. And it may have done nothing at all. Or not. I'm not sure. The money and time involved was probably astronomical. But I was physically disabled either way, no matter the diagnosis. I dealt with it, with a hefty dose of help from those around me--especially my man. So I guess the diagnosis didn't make much of a difference in the long run.

Fret fret. Stew stew. Ruminate. The doc visit will happen. If HSD is the diagnosis, not much can be done that I'm not already doing. Though I do need to exercise more. That's a fact. And I have the gear to do it. But... mope. It may be something else. I just feel lied to because of something that was a mistake.