So although it's been a rough week, I'm feeling hopeful. A friend from church called me earlier this week to check in with me, since I wasn't there last Sunday. She thought I should see an allergist, in case I have food allergies, and she gave me the name of her son's allergist. I have an appointment with him later this month, which I am looking forward to. Even if I don't have food allergies, I think I do have other allergies, because I'm always sniffly/coughy, and I have awful dark, yellow circles around my eyes.
People are so funny. I generally do not say anything when I feel sick, and the only people who know are three people at church, three people at work, my sister, and Laynie. My principal and assistant principal knew but I think they assumed I got better when I had my gallbladder removed. I'm not a big whiner. And I would never tell people all of the symptoms, because I don't want them to think I can't do my job or something. When people find out I'm sick (which doesn't really describe it, but whatever), they always want to advise me on what they think it is. People think it's whatever they have heard of or have experienced themselves. I don't mind hearing their theories, though, because I know they're trying to help.
Since I can't change it, I'm now focusing on what I need to learn from this experience. That has been really positive.
Sometimes it's scary and overwhelming. I guess when I think about it, that's how I feel, but I don't think about it a lot. Mostly I focus on compensating, like saving my energy during evenings and weekends. And I've tried some elimination and challenge dietary changes, which gives me a purpose, even if it doesn't help much.
I'm gearing up for another round of "Let the doctors poke and prod, ignore most of what I say, and find nothing." I've been off doctors for a few months, so it's probably time. I have the new allergy guy, and I got a GI recommendation from my boss, who has Crohn's. She's a discriminating GI consumer, so hopefully her recommendation is good. I want to find a new internist/GP. Laynie's family doctor seemed pretty with it, although she was a really strange person. I have a GI doctor who I think is a really good doctor... if your symptoms fit his research interests. He's into Barrett's esophagus and stomach problems. I became less interesting to him when he concluded that my GERD is due to a plain, old, run-of-the-mill hiatal hernia, and when my biopsies showed no signs of Barrett's. Too bad, because he is a brilliant guy, and I want brain power on my problem!
GI is a part of it, the only part that anyone knows. I get a lot of stomach cramping, and sometimes I'll have diarrhea for a day or several days, for no apparent reason. And the surgeon removed several lower abdominal lesions, which he speculated were to due to inflammation/infection unrelated to my poor, tired gallbladder, which had given up the ghost by that point. But there's more.
What's up with limb weakness, abnormally high muscle tension (torso), tingling, and a feeling that I need to MOVE my limbs. I think it might be what they call "restless leg syndrome," but sometimes it's my arms--like right now. I've had a few times where I had a problem with my left hip, that it's weak and hurts when I try to use my leg. I literally cannot support myself. One time it happened just after I entered a preschool classroom, and I had to stand there, balancing on my right leg, because I could not bear weight with the left. Luckily the class was in circle time, so it was not abnormal just to stand there watching them. It happens more often when I'm sitting and go to stand up, and my body says, "Surprise! I've been saving this for you.. You can't stand, silly!" It's not like this happens frequently, but I doubt it's normal to happen at all. I just go ahead and stand with my right leg, and I gently stretch the bad hip. That helps. Or I can wait for it to go away.
I am loath to admit that I have cognitive symptoms, like word retrieval issues, losing my train of thought, and confusion. I know that everyone experiences going into a room only to forget why you're there. But there are days or weeks that it happens to me frequently, then I'm fine for weeks or months. And have you ever suddenly not known where you are? Not just forgotten where you're going but not even known where you are. I'm not sure if that's normal or not. It happened to the title character in Still Alice (a book I highly recommend), and she ended up having Alzheimer's. When it later happened to me, of course I thought about that book, but I don't think I fit the profile for Alzheimer's. Whew. But the description in the book was right on the money.
And then there's the exhaustion. Sometimes I'm so tired when I get home from work, I can't do anything but lay there. That's pretty much guaranteed to happen on days when I work my regular job and take a freelance interpreting job in the evening. Even thinking about doing anything when I feel that way is enough to make me cry. I feel like such a weenie. It's not like I'm out on a construction site all day! My job is mentally and emotionally draining (try interacting all day with people who need you precisely because they can't interact with people), but I really don't think I should be that tired. It's not all the time. And maybe food plays into it, because there are times I'm too busy to eat properly.
The tough thing is that I don't even know that my problems are related. I wonder if the GI stuff is separate from the rest of it.
I'm so glad [next to] no one reads my blog. It's so helpful for me to process.
OK, I'm formulating a plan. I have the allergist appointment. I'm going to make an appointment with my nurse practitioner (give her one last chance--she did order the right tests to identify the gallbladder problem, after all). I'm going to make an appointment with my boss's GI doctor. And I think I'll make an appointment with Laynie's weirdo doctor. When it comes to doctors, I'll take intelligence over good social skills any day, and I think she's intelligent.
Sometimes I feel like I need to get a medical degree to solve my problems!
0 comments:
Post a Comment