I saw my rheumotologist on Monday for my 6-month follow up appointment. She is the first rheumatologist that I’ve seen that thinks Sjogren’s patients only need to have blood-work done once a year. All previous doctors want blood work done every 6 months.
Even with my pre-diagnosis Cutaneous T-Cell Lymphoma, she doesn’t see the need. I find it bizarre. When I ask her each visit what can she do to help me manage my Sjogren’s pain and fatigue, she blames that on Fibromyalgia. She doesn’t think that Sjogren’s is very serious.
She thinks that Sjogren’s is just dry eyes and dry mouth and a potential risk of Lymphoma. I really should try to find another rheumatologist, but that’s always a gamble. So many of them are no good. They offer PT for pain and fatigue and Plaquenil.
Since Plaquenil didn’t do much for me, she told me to stop taking it and see what happened. When I did that about 6-months ago, I did notice an increase in joint pain. So, I started taking the drug again. But, it doesn’t do very much good.
She wants me to see a neurologist for my shaking hand and the pain doctor to help me with fibromyalgia. Then, she reminded me about physical therapy. I really can’t complete PT and have tried it numerous times before.
After reading a lot about the experiences of patients with Chronic Fatigue Syndrome, I wonder if I don’t also have it. I can’t endure physical exercise. It makes me so much worse.
She did bloodwork that was checking for dermatomyositis, polymyositis or anti-synthetase syndrome. I’m not sure when this test result will be back, but it looks like it’s not a quick test.
So, I have many appointments on my calendar and I don’t look forward to any of them. I don’t have my hopes up that there will be any good news or good ideas to make me feel better.
My poor health just seems to keep to the same pattern. I’m having lots of rashes, itching all over, severe fatigue, and pain. I have to keep going to doctors in order to keep my medications filled.
My dental appointment today was for a cleaning. Unfortunately, the dentist found a back tooth that had a chip in it. I thought I could feel that happen about a month ago. There’s no cavity, but he’s going to do a filling. Ah, the joys of a Sjogren’s mouth….always breaking and crumbling teeth!
I’m thankful that at least I have a very supportive husband and family. They’re very helpful and offer to help me all the time. I hope to travel soon again to see one of my grandchildren. That will bring me lots of smiles (even if it does bring me more pain).
“I am content; that is a blessing greater than riches; and he to whom that is given need ask no more.” Henry Fielding
@2022, copyright Lisa Ehrman
