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.
A friend of mine from the chronic life and spoonie communities is in dire straights. If you have even an extra $5.00, it would help her tremendously. Presently, she’s staying at a shelter until she can find housing. She’s unable to work due to EDS so she has little alternative but to depend on donations to help her find housing and receive medical care.
The link to her GoFundMe page is: https://www.gofundme.com/2j24q8us
My scalp itches. My hair is falling out. I’ve struggled with skin allergies and bouts of eczema all summer.
Luke and Oliver won’t stop being cruel to one another. Oliver hits and calls Luke names. Luke yells, curses, and calls Oliver names. They argue and fight constantly. I don’t know what to do to help them be less cruel to one another. We have a family therapy session next week to discuss these issues.
Jonathan feels too poorly to help around the house again. All responsibilities fall to me. If I don’t cook dinner, assign chores, clean the house, watch the children, check homework, sign papers, feed the animals, and clean the house it simply doesn’t happen.
Jonathan’s paycheck was also a month late causing a huge checking account overdraft. I’ve spent several days trying to sort out the overdraft and persuade the bank to refund hundreds of dollars in fees.
I’ve also spent several days getting in touch with Luke’s teachers in hopes I can proactively set up tutoring and study sessions to keep him from failing 8th grade.
It would be very convenient if I didn’t have a chronic illness right now. I’d have so much more energy for all of this. It’s utterly exhausting. Unfortunately, these are the cards I’ve been dealt and I’m trying hard to accept my hand.
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?
I’m still alive and kicking. Unfortunately, I had an awful RA flare that lasted for the past two weeks. Normally RA flares leave me practically bedridden, giving me plenty of time to blog – mostly about symptoms and pain. This time, I had too much that had to be done. Christmas preparations, work…stuff…, Oliver’s Harry Potter themed 11th birthday party…the list goes on.
Instead of resting, I pushed through the exhaustion, fever, and pain until I was in a miserable state and nearly hospitalized. Now I’m on a mega-dose of prednisone. I had cut back to 2 Ultram a day, and I’m up to 6-8 pills a day again. I had hoped the guaifenesin would allow me to stop taking Ultram daily, but no such luck. I’ll just be glad to be off prednisone.
If there was time, I’d write another story about Dee. Dee is an accidental nexus of drama so there is almost always a Dee story.
I finally had a few days off from work. Unfortunately, I accomplished next to nothing.
Thursday I was on rotation for work so I couldn’t leave my house and worked most of the day. Jonathan cooked Thanksgiving dinner. I’ve been struggling with miserable RA back pain so I rested my back as much as possible. I didn’t spend a moment of time with my side of the family. I do miss my grandmother, but I do not miss the family shenanigans so I’m not upset.
Friday, I was off work and wasn’t on rotation. I drove to Dee’s house to help her get her farm use truck off her round pen. The truck’s transmission is stuck in drive so the truck can’t be backed up. We disassembled the round pen so the truck could drive through and we parked it on the other side out of the way. I also hauled off some trash for Dee because she has absolutely no transportation and, since we live in the middle of nowhere, no way of hauling trash to the dump. I often feel frustrated with Dee, but I also feel sorry for Dee because she’s a lightening rod for bad luck and unfortunate events.
While I was at Dee’s, MediumDog rolled in a pile of horse manure then on a putrid deceased groundhog carcass. I gave MediumDog a bath at Dee’s. Lifting a squirmy 60lb dog into the bath tub did my back no favors. However, allowing filthy MediumDog into my car for the 40min ride home wasn’t an option.
Saturday Jonathan’s family had their Thanksgiving so I spent the majority of the day there helping Jonathan’s grandmother. She is still recovering from a lengthy hospital stay. The majority of the visit I just tried to stay out of the way and hide my significant back pain. Jonathan’s family is very kind and accepting. It was nice to enjoy a Thanksgiving meal without an undercurrent of hushed drama.
Today I gave MediumDog a second bath. Fortunately, MediumDog hadn’t rolled on any new putrid carcasses or feces, she just had the residual stench of Friday’s adventures. I also gave BigDog a bath because he’s a lab and labs always need baths. Washing two dogs and cleaning up the bathroom did my back pain no favors. I had to go grocery shopping tonight which I only managed because Luke rode with me to the store and helped lift groceries and load the car.
Three days off work and I haven’t accomplished anything I set out to accomplish. My office is still a mess, the bedroom full of clutter, I didn’t list any items on Craigslist or Ebay to earn much needed extra money, I didn’t seal the tile in the downstairs hallway or accomplish any other home improvement chores… At least the dogs don’t reek?