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 should be asleep but I’m not. I’m usually not asleep when I should be. Tonight I’m not asleep because I have been stricken with terrible heartburn causing my esophagus to feel as though stomach acid will melt straight through my chest wall. I suspect I have gastritis again from taking pain meds.
Another day, another illness.
I was looking forward to visiting the rheumatologist next week. Cortisone shots relieve the back pain I’ve been plagued with for weeks now. The rheumatologist retired at the end of July, however. Surprise! His office contacted me today to let me know he retired last month and to cancel my appointment.
To get a new rheumatologist, I need to visit my PCP, get a referral, attempt to get in an “approved” rheumatology practice (which almost never happens), get a letter from the “approved” offices stating they’re not accepting new patients, submit the letter to the insurance, and find an “un-approved” rheumatologist accepting new patients. This process takes months. I don’t know how other people navigate the system. What if I were elderly, less tenacious, sicker, or less intelligent? Would I just go without treatment?
Jonathan found some jobs with potential to lead to more jobs. Fingers crossed this leads to steady work for him. Steady work and steady income would greatly benefit our finances.
The Rheumatologist is Weird
Yesterday, I got cortisone shots in my back. The rheumatologist worries me because he seems to think fibromyalgia is a mental health issue rather than a chronic pain issue. However, he does prescribe treatments for the chronic pain I experience and doesn’t treat me like a med seeker.
The rheumatologist drops little odd hints during our conversations about how much Lexapro I’m taking or needing to up my dose or needing to add another psychiatric drug to my current treatment plan. For instance, when I told him I was having problems with TMJ pain and headaches, he mentioned something about stress and adding an anti-anxiety medication. I explained that my level of stress is presently mild and taking 20mg of Lexapro has already made me a mood-less, unemotional zombie (obviously anxiety is not the source of my jaw pain). He seemed totally unconcerned that I was possibly overmedicated on Lexapro and said something that can best be summarized as “Good”. Then he suggested that I try a sports mouth guard while sleeping.
Dealing with the rheumatologist is weird. He treats the symptoms I experience, but also seems to feel the symptoms are almost entirely in my head too. Perhaps this is because he’s old enough to be my grandfather, deals with frustrated elderly people, chronic pain patients, and med seekers all day. I’m quite a bit younger (and more cheerful) than his usual clientele. He is also very hard of hearing and has a cochlear implant for one ear and a hearing aide for the other. Since I also have hearing loss, we sort of mumble at one another and only understand a portion of what the other is saying so I’m sure this does our ability to communicate no great favors.
Whatever the rheumatologist thinks of me, at least I have scripts of the meds that help for the next 6mo until our next appointment.