Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I recently took the plunge and decided to go after my RA after about 6 years of pretending that I didn't really have it. After my initial diagnosis, I tried a few treatments, decided I hated how they made me feel, really didn't know anything about RA and never saw a doctor about my RA again for 6 years. I've already posted on this before - but I'm in medical school now and learning so much about RA that I never was informed about by my rheumatologist. My new knowledge, along with worsening symptoms, have prompted me to finally seek some treatment. So this is it. My doctor called today and confirmed my anti-CCP is still off the charts (over 400) and that neutrophils are high and lymphocytes are low. All classic RA. I don't get why I'm finding myself grieving again. I knew I had the diagnosis. I guess hearing it a second time really confirms it. Sounds stupid, I know. But I can't help feeling this deep sadness today. And anger. And frustration. I want to cry. I want to wallow in this feeling of self-pity. But I will not. I have already let RA do too much to me that I despise. I'm not sure why I'm even writing this post or the point of it. It's just nice reading everyone else's and knowing that if anything, I am not alone in this. Just knowing you all are out there and that you understand is a comfort to me. Thank you for that.
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I've been on high dose prednisone for pneumonia, and now I am slowly weaning. But lots of symptoms I don't like having, plus overeating has put at least 10 lbs on me. The food is "loud" as the GLP-1 users refer to it.Also pressured speech. Which comes out in my posts. Sorry I posted so much. I just need an outlet for my agitated and irritable brain. Just scroll on by my posts, if they are too...
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I haven't been around in a long time. I am admin in a private group, and I would like to upgrade someone else to that position. I thought I knew how to do that, but the prompt has gone missing. Or is it not allowed to upgrade someone else to admin? I just find "ban and demote" under "Edit." I don't get notifications to DS anymore, but I wil come back in a few days to find out the answer. There...
And I went to see an Occupational Therapist and she says my hands and wrists are in really rough shape (we didn't get to the feet yet! Wait till she sees them!)
I've been downright depressed since I saw her, realizing the implications of the progression of this disease. I do a lot of typing, and I have played flute for over 45 years. I still play a lot of advanced classical music, and in church on Sunday. Yesterday, it seemed like everyone in the church came up to tell me how much they enjoyed my playing.
I have a cousin with ruined hands (talking a life time - 61 years of RA and no meds in the early days at all!) and that is what I am visualizing. Well, maybe if I use the splints and don't do anything except the exercises the PT gave me, not quite so bad!
My bright lining in the cloud, is every time my hands get worse, I hold onto my flute with a lighter and lighter touch. I am beginning to sound downright like a professional, ironically.
So, do allow yourself to grieve, as long as it takes, so long as it doesn't become full fledged depression. And look for that silver lining - what speciality are you going into? Think of what a compassionate rheumatologist you would make!
Hugs, and it is ok to cry!
Be well
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