The rheumatologist’s nurse called me today. My labs are abnormal. My sed rate, TSH, and T3 are high. The Sjogren’s antibody test was negative. The rheumatologist is referring me to an endocrinologist. The endocrinologist doesn’t have appointments available for three months. Another day, the same medical shenanigans.
I tried to explain to the nurse that taking oral contraceptives can cause an elevated TSH and elevated T3. However, the nurse didn’t understand the difference between a T3 hormone level and a thyroid antibody test. She kept telling me that my “T3 antibodies are elevated”. That statement doesn’t make sense. T3 is triiodothyronine which is a hormone level, not an antibody. TPO and Tg are antibody tests but she couldn’t tell me if the rheumatologist ordered an antibody panel. The nurse snapped at me for questioning her…for having more medical knowledge about this topic than she does, really. Again, same medical shenanigans, different day.
Now I have the “pleasure” of waiting months for treatment again. Just when I felt I was starting to make headway with treatment, or at least have a diagnosis, it all gets turned upside down. If I had an option, I’d quit medicine. I’d quit seeing doctors, making appointments, having tests – all of it. I’d just move on with my life and focus on something-anything- other than how much time I spend feeling sick.
(Oh! And the Sjogren’s antibody testing being negative? That doesn’t really mean I don’t have Sjogren’s. The test has a 30% false negative rate. Sigh…)
My previous rheumatologist retired unexpectedly. After months of waiting, I was finally able to see a new rheumatologist. She ordered new labs, questioned my current diagnoses, and (of course) recommended I stop taking pain meds.
Yes, she said I should stop taking Ultram. In her opinion, I should completely stop taking the only medication that has allowed me to remain active and functional. I should stop taking Ultram, which I’ve taken for a few years now, because some people become addicted to Ultram. <insert grumpy eye rolling face here>
I am not addicted. After several years of taking Ultram, I’m unlikely to become addicted (less than a 1% chance, actually). I only take Ultram to reduce the exceedingly high levels of pain which I experience daily. I don’t even take enough Ultram to eliminate the pain, just reduce the pain so that I can function and focus on something other than, well, being in excruciating pain.
So, even though I am supremely irritated with this course of treatment, I’ve started the slow process of tapering off Ultram. I don’t want to be written off completely as a non-compliant patient (which is what happens if you are both fat and do not do exactly as your doctor recommends). This week, I reduced my dosage by 25%. I’m already experiencing a marked increase in pain and pain-related sleep disturbances. Things are only going to get tougher from here as I return to my excruciating, pre-medication state. I really don’t want to go through this. I can only hope that there are other pain relief options which may work for me.
I’m still around. I’ve been sick, then slightly less sick, then sick again. The only thing that has changed is that I’m tired of talking about feeling awful all the time. Feeling awful is tiring. Sometimes talking about feeling awful is tiring as well.
The rheumatologist is retiring. Soon I’ll be without the pain medicine I need to function on a day to day basis. No other rheumatologists in my area prescribe pain medication. I’ve been diagnosed with Sjogren’s recently which helps explains why my eye lids stick together and my tongue breaks out in blisters.
TheJob is still working on their bizarre social media policies. While they can’t ask for anyone’s account, they’re kinda asking for everyone to follow, friend, or otherwise allow a corporate account to access their information. Ridiculous. Restructuring continues. Covering up information about the restructuring with the artful guise of “complete transparency” continues as well. It’s frustrating.
Luke has hard times; probably bipolar disorder. Oliver has been bursting into tears for no reason since his mother’s boyfriend moved in with her. After a long discussion with Jonathan, I’m taking a less active role in parenting. The children resent me. They resent me for parenting because I’m not their parent. I’m not anyone’s parent.
Less parenting means more time to devote to artistic pursuits. Perhaps I’ll make something of myself as an artist yet. Frida Kahlo managed to paint in a body cast. I’ll somehow manage to create art with a full body disease. I purchased a sketch book for planning photoshoots and have scheduled several friends to model for photographs. I’ve also been considering a series of self portraits – possibly portraits expressing how it feels to live with chronic illness. Strangely, when I tried to order a Prismacolor pencil set, I found out there was a shortage of colored pencils because adult coloring books have surged in popularity.