gra_is_stor (gra_is_stor) wrote,
gra_is_stor
gra_is_stor

Updates from the scary doctor thing

Well, my "umbrella" trick worked - the doctor today was not scary at all, and was respectful and knows that the conditions I was concerned about are real (though he loses points for not knowing what CFIDS is, but that wasn't my own concern anyways).  

What was scary for me was this was my first time seeing a rheumatologist ever.  It finally occurred to me that I may have fibromyalgia myself, and have had it the whole damn time (at least 15 years now) that I've known I shared symptoms with others who have it, but kept thinking that because my main problems were digestive, that I must have something else.  Now that it has been confirmed that I do in fact have something else, that has been treated, and I *still* have all the same symptoms in common with my friends with fibromyalgia, plus now that my gut has stopped trying to kill me, my fatigue and joint pain has been able to get more of my attention; it finally occurred to me, oh, maybe I have that *too*.  Duh.  

And I had been forewarned, but he really did run a large bunch of tests.  Lots of labwork (lots of vials of blood drawn), and I even got x-rays, because he's trying to cover all the bases where I have pain (which is still mostly everywhere, just not as much as what had been in my gut before surgery).  And I'm being referred to specialists who look for sleep disorders too.

So, after 3 hours in a medical facility I finally got to leave.  If he doesn't see something else in the various tests and x-rays, I'm looking at a potential triple diagnosis, of fibromyalgia, costochondritis, and possibly mild arthritis in my hands.  Not terribly happy news on that last count.  And, I won't have a definite answer for a couple of months, because their office is just slow like that.  My appointment where I got to see him today was made at the beginning of December.

So, good news bad news.  Good news: getting confirmation that this really is not just in my head, and hasn't been this whole time, is nice.  Getting actual names of actual conditions gives me new ways to understand and organize my symptoms in my own head, and it feels less overwhelming to me to be trying to manage about 4 or 5 conditions, rather than trying to manage about 20 or 25 independent symptoms that aren't terribly consistent.  This is one of those situations where I can clearly see how naming something can give you power over it.  It could also give me better starting points for looking stuff up for even better understandings, and possibly more ideas for how to manage them.  

Bad news: I sooooooo don't want anything acute to be wrong with my hands, wrists, or anything involved in playing the harp or dancing.  Those are two activities I would like to keep doing for a long time.  I know having systemic issues, those activities may always be somewhat limited for me, but I still want to keep being able to do them.  Now, even if it were arthritis, we don't know yet what kind.  We still have to wait and see.  I hate that part. :(  I would like it to be something that is NOT doomed to get worse, and to be something that be managed sustainably.  Something that can be totally reversed and go completely away would be awesome. ;)  But with the auto-immune disorder soup I've already got going, I'd be ok with I just have to be mindful of how I manage it in the future.

So, to sum up, the doctor was not evil or scary; my interactions with the doctor, the lab techs, and even the people who had to schedule me for more appointments were all positive; and the end result was another round of good news/bad news/wait and see. ~:P

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