Saturday, October 10, 2015

Update on Therese

I still haven't written what has led us to this point on Therese (I have that post started, but we have seen so many specialists and gone down so many paths that I am honestly overwhelmed), but the last two weeks have been *hard*. We were so thrilled to get a diagnosis for Therese's disparate and (to all other doctors) undiagnosable symptoms. It turns out that she has a Mycoplasma infection. For most people, that resolves itself in a reasonable amount of time. For a few people, though, the Mycoplasma makes its way into the cells and wreaks havoc in any number of untold ways. The problem is that you don't know it's there. All we know is that Therese started to have problems a few  years ago. The first one, and the one that has plagued her the most, is joint pain. Unrelenting joint pain. She was tested for RA Factor and arthritis. Lupus. Anything. Her ANA level was 1250 (so, so high). She has had two full cardiac workups, a liver biopsy, a gallbladder hida scan, numerous xrays and cat scans, an MRI, and God knows what I'm forgetting. It turns out she has a "fatty liver" that otherwise looks completely normal. She has a gallbladder that empties at 25% of the normal rate, but she isn't symptomatic in any other way. She has abnormally high bilirubin (probably an inherited, mostly non-symptomatic disease called Gilbert's (pronounced the French way). None of this helps us. At all. Interesting. Expensive. Doesn't help.

The Mycoplasma diagnosis helped. A lot. Our wonderful new doctor told us that six months of antibiotics should make her as good as new. She was put on two antiobiotics a day. Cue a couple of her worst weeks in awhile. She has had a terrible headache every day. Bad insomnia. Horrible weakness, dizziness, brain fog (which she has had for months now), small muscle spasms, and I don't know what. She has hardly danced this year at all. She hardly leaves the house.

On Wednesday I took her back to the doctor and he ran a bunch of blood work. Everything came back normal, apart from the fact that her red blood cells are hemolyzing. Essentially, her red blood cells are being destroyed, either from the Mycoplasma or from one of her antibiotics. Because that antiobiotic can also cause some of the other symptoms she's been having (notably the headache and muscle problems), he took her off of it. The good news is that she's not anemic, so her body is replacing the red blood cells as fast as they are being compromised. Her doctor did say that the bacteria did not like being displaced after residing in her cells for so long, and with the antiobiotics shaking it up, things could be unpleasant for her.

Basically, it sucks. It sucks for her and it sucks for us. It sucks because people don't understand. When she manages to get out of the house (only three or four times in the last couple of weeks), she doesn't have "symptoms" of illness - no runny nose or cough or anything like that. But she can't stand up straight or walk well. On Thursday, we were at debate club, and she truly could not even stand without support. She sways and falls into the wall (or over if the wall isn't there). It's not an act and it would almost be funny if it weren't so tragic (it's still kind of funny and she has a sense of humor about it). I wasn't in the room for her debate round (judging my own), but she told me that she got up to speak and immediately went on a sideways trajectory and headed straight into a wall (which is good, actually, because that means she didn't fall).

Pretty much the only way I'll let her out of my sight is if she's with Andrew (her boyfriend). I know that he'll watch out for her as closely as I will. He's also young and has better reflexes. He has a much better chance of catching her if she falls :-/ It's funny - I remember last debate season, many months before they were together, there were a few times when she was unable to get her things schlepped around or she had to get up or down stairs and I couldn't be there to help her. I asked Andrew back then to help her or to watch her and make sure she was okay. I would not have even called them friends back then, but I completely trusted him to take care of her. How much more would I trust him now? He's such a good guy.

The catch is (and I can't believe this even occupies my mind, but it does), that there is a "no romance" rule at Debate Club (a rule I completely support, by the way). Well, on Thursday, Andrew had to hold Therese's hand and arm in order to walk her from place to place so she *could* walk from place to place. And they got some looks. I'll be completely honest...NOTHING about that looked romantic to me. It was actually the posture of a someone escorting a little old lady. Teenage couples holding hands have their hands swinging free between them, they don't have their arms rigid between them at a 90 degree angle. Still. I am just waiting for someone to tell me that their conduct was inappropriate. Maybe I am too defensive (ya think?), but there it is.

In any case, that's where we are with Therese. Yesterday she thinks her headache was better, so I'm hoping that trend continues as the problematic antiobiotic makes its way out of her system. I have to keep reminding myself that she has been sick for years and I can't expect her to get better overnight. It will take months. I miss her the way she was... but considering she wasn't even a teenager when she got sick, I will probably never have her back the way she was. Not exactly. She's pretty great the way she is, and I'll take any version of a pain-free Therese I can get.

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