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decisions, decisions

Posted Oct 30 2008 12:00am
So, I'm broken again in yet another new and interesting way, and have a number of issues to figure out and decisions to make. To whit:

1. Figuring out if this is real or just an artifact of my thyroid meds being off. "This" is two things, which may or may not be related.

First and familiar, the gastroparesis persists, and is worse. I feel nauseated a lot of the time, particularly before eating. The first bite is always dicey, but it seems that the act of eating makes me feel better for a little while. Then as soon as I stop eating, I feel gross again. This evening at dinner I had an odd thing happen, when I took my first bite it felt like it was going to come right back up again, because my stomach was closed for business. It was very strange and not at all like nausea, more like a physical obstruction. I sipped some water and the spasm passed and I was able to eat, but it was very weird.

Second is the new thing, which may or may not be Sjogren's Syndrome. My eyes are very dry and I never have enough saliva to swallow. Thankfully I have enough to keep my mouth moist, but that's it. It's very peculiar. I'm doing eye drops and nasal saline spray about four times a day, and that helps, but the eyes burn constantly anyway. My salivary glands all hurt, but not in the old, RAI-damaged-salivaries way. My submandibular glands in particular are cranky. I have a persistent ache under the right side of my jaw. This has all been going on for about 10 days I think, it's hard to keep track and I'm kicking myself for not writing about it sooner.

Both of these things could be related to thyroid meds, but otherwise, I'm fine. I've had some episodes of feeling colder than everyone else, and a bit of itching, but nothing systematic or major that would indicate I'm hypo. Much more likely would be that I'm hyper, but I'm not having any palpitations or other hyper symptoms, either. OK: the occasional thumpers, but not even once a day, certainly nothing to be concerned about.

2. How do I know when to escalate these and bring them to my doctor(s)? Which doctor(s) do I go to?

I broke down already and made an appointment with my g/e doc. I'm going to ask him for some erythromycin for the gastroparesis. Maybe it will help, and antibiotics have often helped with my other autoimmune issues. So if the dry eyes/mouth thing is Sjogren's (therefore autoimmune), maybe that will get better, too.

This question is mostly about the possible-Sjogren's. Do I take it to my rheumatologist? What if it is just another manifestation of RAI damage to both salivaries and tear ducts? As much as I love my ENT, this is outside his bailiwick, I think. I could go to my TMD doctor for the under-the-jaw pain... I have no idea.

As to how long to wait before I call the doctor, I have this idea about giving things like this some time to resolve themselves, because that would obviously be the best outcome. But it's not getting any better, if anything it, too, is getting worse -- and it's horrid because I'm parched so I drink but then I feel nauseated because of the gastroparesis.

But, and this is my most important argument, none of this stuff is preventing me from doing what I have to do. I have markedly less enthusiasm for things I might otherwise want to do (I took a 2 hour nap this afternoon), but as far as housework, homework, volunteering, and working out, I'm keeping up just fine and doing my usual reasonable impersonation of a healthy person.

It gets very tiring walking around feeling as if you are about to throw up all the time. Like many people, I have a phobia of vomiting, I haven't done it over 20 years, and I don't remember how. That sounds stupid, but it's true.

3. Last but not least - this is funny, actually, considering I'm writing this all out here for anyone to read - I don't want to admit that there's yet-another-thing wrong with me. It's embarrassing. At dinner today of course everyone noticed when I took a bite and then just stopped and sat very still for about five minutes, waiting for whatever-that-was to resolve itself so I could eat my dinner. "Are you all right?" DD asked. I had to answer her truthfully and say no, I was having some trouble swallowing. I'm glad they haven't called me to work since fall break ended, I don't know how I'd manage a whole day at school. I'd probably manage fine, I manage at home -- but it's different being on your feet and talking all day. I suppose I'll find out.

Meanwhile, after spending the last five years lurching from medical crisis to medical crisis, I would really like all of this to just go away. Life's not fair, but it's particularly hard to deal with something else just when I'm getting in a good groove and trying to get on with my life.

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