Wednesday, May 18, 2011

Do we get the trend yet? I suck at updating.

So, been a fun month. You know, the kind of fun that goes along with multiple health problems.

I've been to the ER for a migraine. I spent most of the last three weeks choking on an entire meal at least once a day. I walked around NYC for a day without my can or proper braces (yeah, we already established it was a stupid idea, believe me). I ended up in the ER again (for what may or may not be either a sprained knee or ACL tear). I saw my new rheumatologist.

So, the choking....comes and goes. Seems to have been in a massive "come" cycle lately. But, I don't know what else to do about it than what I'm already doing. So, I just have to pray that I can keep up with coughing frequently to keep it all clear.

Um, girls week. That was actually pretty nice. Off work for a week. But spent so much of each day going out to do things. I was pretty exhausted after two or three days. But it was still so much fun. Then Friday to cap the week, we spent the day walking around NYC. Which I didn't think would be such a major deal. I mean, I spend 12 hour shifts walking and straining everything in my body at work. However, my joints disagreed. I was feeling muscle fatigue halfway through the day, but we were taking breaks a lot, so it wasn't so bad. Then at one point, I took a step and felt a sharp pain. That NEVER went away. The second half of the day hurt. I limped. I tripped on stairs a lot, my muscles and other joints were arguing because I was using them more. I had to hold someone's hand just to take a step up onto the sidewalks. Really fun. Not. I could not move when we got home. And still hurt the next day. And after that. That was Friday, I got on the plane home Saturday. I had hoped to see my GP on Monday. But I couldn't get in so I went to the ER.
Here's what kills me: My EDS diagnosis is "pending", as in, clinically speaking, the geneticist is leaning that way, and we're STILL waiting on the skin punch biopsy (more on that momentarily). But any halfwit knows that if EDS is suspected, you treat it like it's EDS to be safe. No matter how many times I mention it to an ER doc, it doesn't seem to register (that and too many docs don't know anything about it past EDS 101: the body sucks in all things collagen). So when I went to the ER, I got the same workup and treatment as anybody coming in with joint pain. In somebody with EDS and a specific pain like this, an MRI shouldn't be considered going too big. Because you really don't know what's going on in someone with EDS, you just don't. So I got my knee wrapped, got non-narcotic pain meds (I requested the non-narcs because I would still like to be conscious more than 2 hours a day). So far, my knee still kills me, I can't walk on it, and the tramadol sucks (I swear the stuff is just tylenol).

But I saw my new rheumatologist today. She is very concerned about my knee given the likelihood of EDS. She gave me something else for pain (which I didn't get because the pharmacy computers crashed just before I got there, and this one was called in, so I couldn't take it elsewhere and they couldn't authorize to send it elsewhere with no computers), told me not to hesitate to ask for another note for work if I felt like I still couldn't use it in a couple days, and told me to call her regardless next week to update her.
Everything else went well. She agrees with the EDS I/III suspicion based on my H&P (she did a thorough exam herself!!! points for her). She is increasing my Lyrica for the fibro pain; she said that if I am benefiting from what I'm on now, I would do better with a little more (because I'm at the low end of the dosing spectrum). She has also given me a questionable Dx of Raynauds. While my hands and feet don't get blue/black or white, they're always cold no matter what the temperature is, and half the time, my hands/fingers turn red and hurt when they're cold. I'm not terribly worried about the Raynauds now though. If it gets worse, sure, but I can't do anything about it and it's not severe enough yet.
She also told me to call my geneticist again (I do about once every 6 weeks or so). She said if they still don't get back to me or give me a firm answer about the test, then to go ahead and switch docs. Because she wants to help me find PT/OT nearby who specializes in connective tissue disorders like this - not just any Joe Schmoe PT/OT who would push me past my limits. We both agree that I need specially fitted braces and support devices and exercise to keep my body as healthy as possible for as long as possible. So we're going to get the test done and then start looking for therapists.
She was reading my mind through everything, it was really incredible. And she sent me for x-rays of my worst joints. Which I hate, I just don't want more radiation, but I'm glad she's keeping track and getting a current baseline look at my joints to keep track.
It was definitely a good visit.

And in case anybody is wondering, I'm completely and totally sick of my knee brace. I switched from the wrap to the hinged brace 24 hours after my ER visit. It's more supportive. But it's not like when I usually have problems with my knee where I would wear it for the bulk of the day while I'm up then take it off when I flop in front of the computer or just to walk around the house. No, now I have to wear it the entire time I'm up. It keeps it supported and aligned and reminds me that I can't bend it (I sit on my feet without thinking about it, instinct to keep my toes warm). So my toes are cold and my foot swears it's falling asleep every ten minutes because the brace pushes on about ten nerves that head south. It's not tight, at all! It's looser than how I usually keep it for work. My foot is still protesting anyway. (I think part of it is from keeping it propped up on a pillow all day)

So, that's been my fun in a nutshell. Actually, the real nutshell is that (despite my body's protestations) this is the month of EPIC WIN! My nephew was born at the beginning of the month, I had girls week with my chicas, I am going to CA to go to GleeLive with my friend out that way this weekend (OMG! It's less than a week away!), and there's a float trip at the end of the month. All in all, the pain and tired that will come of this month will be more than worth it. That's what I have June for...sleep (or death, that's fine too, just as long as I make it to the end of the month :P ).

That's all I have for now. I've been writing and my wrist is done with the keyboard. So I'm going to work on some arts. That's easy enough.

::hugs and love::

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