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…)
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 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.
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.
Jonathan got paid well for his most recent jobs, and he gave me a little extra money . Now, I can afford guaifenesin and groceries at the same time! I can afford to buy more foundation to hide the butterfly rash that has been ever present for a few weeks now. I’m not ashamed of the butterfly rash, really. I just prefer to cover it up for work so people don’t ask what happened to my face daily. Butterfly rash doesn’t commonly occur with RA or fibromyalgia, I’m just one of the “lucky” few who has the face plague.
Speaking of work, I’m required to post my photo and name on a public website. Only my closest friends and coworkers know where I work. I’m very careful to keep my personal life and work life separate for many reasons, but the company I work for has been emphasizing “family culture” recently. I guess I’ll try removing photos of myself from social media so it’s harder to see if I’m me?
I don’t want coworkers hunting my social media profiles…or worse, the person who has stalked me in the past getting an updated photo of me. The HR representative who wrote me up for having a social media account in 2007 works in HR at the company I work for now. While she’s not necessarily smart enough to track down my social media profiles herself, last time she requested a coworker to add me on social media and print out my personal profile which she used to write me up. Also, out of the hundreds of people who work in my building, a few are friends with an ex-boyfriend who has stalked me. All of this makes me leery of advertising who I am and what I look like to the corporate world when I’m usually unwilling to admit that I’m part of the corporate world.
(And I can’t even replace my worn out clothes)
Today was a bad day. I often feel physically bad, but don’t often have what most people call a bad day. Today I felt physically miserable and everything went wrong. There are so many things I cannot write about because it will reveal my identity or location. So I’m left saying only that today was a horrible day.
I bought more guaifenesin today even though I technically didn’t have the money. I figure that if it helps me feel even a bit better, it will be worth the grocery money I spent. Naturally I bought the smallest bottle available.
Tonight I added new clothes to an online shopping cart. Of course I didn’t complete the purchase. I have no money. But window shopping for a while and pretending like I had money was fun. Having money to replace some of my worn out clothes would be lovely. It’s just not in the budget.
“Twerking Harry Potter”
Physically, I’ve been extremely achy and exhausted. I can barely hold my eyes open. I had to take a nap again when I got home from work because I was too miserable to cook dinner. I woke up a short time later to the kids misbehaving. Oliver threw a empty plastic mop bucket at Luke’s head which had something to do with Luke pretending to be “twerking Harry Potter”. Luke was holding a huge icepack to the side of his head when he burst into my bedroom shouting about Oliver. It’s funny in retrospect but was extremely annoying as it was happening.
Jonathan has let the kids stay up waaay too late tonight. I remember when Jonathan would be in a grouchy mood if I let the children stay out until 8:30 on a summer, weekend night. I guess he’s forgotten how unpleasant the kids are in the morning when they don’t get enough sleep.
I’ve set a goal for myself to go to bed around 9P at night and wake up between 5-5:30A since I tend to have less pain and fatigue in the morning. I stayed up far too late last night because the kids wouldn’t go to bed and I haven’t felt quite right all day. When I woke up my ear was filled with fluid and I felt dizzy. Since then I’ve just been a ball of aches, pains, tiredness, and headaches. I tried to take a short nap at 7P which turned into a super long nap when I slept through my alarm.
Naps aren’t allowed. Last year Luke told his school administrator that he “never knows when [I’ll] be asleep or awake. I think Luke said this because he didn’t want to wake me up from a nap to ask for help on an assignment. Although I’ve told Luke it’s ok to wake me up if something serious happens or if he needs help with school work while I’m napping. However, the school administrator took Luke’s comment to mean that perhaps I am on drugs or guilty of child neglect – rather than being a person who works 50hrs/week in spite of having 2 diseases that cause fatigue.
Since I’d prefer to avoid a visit from CPS and/or a social worker, I’ve been doing my best to nap as little as possible no matter how bad I feel. Unfortunately, this doesn’t always work out. Some evenings I’m so drained and having so much pain that it’s hard to keep my eyes open. My body feels physically heavy and my eyes close no matter what and I have to rest.