I'm really trying to go day to day with what's been happening to me. When this all started with stomach problems I didn't really expect to end up here. I keep worrying about things like scleroderma, even though I don't seem to have any of the symptoms of it. I've made a little progress on the gastro front, I've been able to have CT images which show my internal organs are fine, no evidence of much of anything. I would assume that's good news. I finally had my endoscopy and colonoscopy on Tuesday, and it turns out I have gastritis. That's probably been the source of most of my discomfort internally, but I'm just worried about how everything is connected. My blood tests have shown that there is probably some kind of autoimmune issue. Elevated ESR, neutrophils and monocytes. I'm seeing my gastroenterologist tomorrow, and this time, since it's going to be a really long wait to see a rheumatologist it seems, the next series of blood tests I'm going to ask to run will include an ANA test.
I've definitely been having a lot of anxiety. I worry about my skin, and my aching inflamed joints. I've not seen any evidence of tightening skin, or thickening. But it seems drier, and perhaps more wrinkled than it was, perhaps thinner. I don't really know. I've had slight rashes crop up, odd pink raised sore blotches on my chest. And my skin feels sensitive.
I seem to alternate between not being able to sleep and feeling very tired. This whole ordeal has been exhausting. I should note I don't live in the UK (I live in the US), but after finding this community, I just felt I had to get things out there, try to talk to people who have gone through similar things.
My eyes, mouth, and throat have been dry lately as well. I've been wondering if perhaps I have Sjögren's. It's been frightening for me to try and figure it all out, and I know the only way is through investigating it. But I do want to prevent things from getting worse. I wonder if there's something my doctor can do now, some kind of medicine I can take in the mean time which may help me. I don't want to get worse, or go many months or even years without answers getting worse all the while.
I don't know if there's relief at all when people find out what it is, when they start getting treated... if it improves. Currently that's my hope. I don't want to be 30, as I am now looking at the last years of my life. In some ways through this process, I've had some fears, at first thinking what if I had cancer and now I know that I don't. So I should feel better. I wondered about IBD, but it seems I don't have that either. I feel like it's a diagnostic maze, and even though each time so far I've come up with 'good' news, the way I feel currently isn't good.
I'm sorry for rambling, and I know I have to find the answers, and hopefully get the help I need from my doctors. I just, at this moment I felt I had to get it off my chest. Passing the time waiting is very slow.