I am in a holding pattern. I have a follow up appointment with my new rheumatologist on April 8th. I am not sure how having an actual diagnosis is going to affect me. I have tried many many things in the name of the unofficial diagnoses I have received just in the last three years. My last rheumatologist was willing to try almost anything, chemo, steroids, cortisone injections, non-narcotic pain relievers reserved for rheumatoid arthritis.
I am not sure what treatments will be available to me once we (hopefully) have a concrete answer. I am placing almost all of my bets on Lupus, but who knows anymore? I have been through so many appointments where doctors sat baffled by my test results and symptoms. I am not sure if the befuddlement was a product of missing information on my part, as doctors these days are held to a tight schedule, and I never could quite get my entire history and list of complaints out.
But here we are… if it is NOT Lupus, I will be quite flabbergasted. I know there are other conditions that mimic Lupus, and so I am trying to prepare myself for any of the other possibilities. But if there is more befuddlement from THIS doctor, I think I might pull my hair out and run around in circles, screaming. I am already prepared that I am probably going to be quite emotional, no matter the outcome. I have made a point of not scheduling ANYTHING for the rest of the day of the appointment, or the next day, just in case.
How is my life going to change if I receive an actual diagnosis?
I am hoping the hellish levels of pain will decrease, even if only slightly. I have not had a pain free day in at least a couple of years. At my last appointment with my primary care doctor, she revealed that I have stage two kidney disease. Another sign of lupus, but also a sure effect of all of the NSAIDS I have taken in my life. My last rheumatologist prescribed IBU in higher doses and increased the daily limit. My current primary care doctor scoffed at that and told me to go off ALL NSAIDS immediately. What, pray tell, shall I take then, while I wait two weeks for my rheumatologist to offer a suitable replacement?
She said she could send me to pain management, which I haven’t tried for two reasons. One- I would have to cease all use of cannabis, which is the only way I am able to relax in the evenings. Two- I have had friends that had to go to pain management, and it was less than ideal, too much of a hassle. Plus I don’t really want to be on an opioid.
How is my life going to change after the 8th? There has to be something better than this.
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