A Whirlwind of Change

I’m not sure there’s a single adjective that can describe the past couple days. In fact, I’m inclined to characterize them with several near antonyms: confusing, disappointing, relieving, stressful, tiring, worrisome, and hopeful to name a few. They’ve been emotionally exhausting to say the least. I’ve had two medical appointments that I successfully handled myself, driving and all, but that largely change the trajectory of my health treatment.

On Monday, I saw a geneticist. This appointment was a big deal for me because it was far away, involved a lot of talking and body poking and prodding, and sort of “big question” concerns and considerations. I imagine this latter point is the reason that there are genetic counselors; facing the possibility that one may have various genetic abnormalities or problems can be emotionally burdensome.

Yesterday, I went to my rheumatologist and received a revised diagnosis of psoriatic arthritis. I say “revised” because, back in May, it was hypothesized that I had the hypermobility form of the connective tissue disorder Ehlers-Danlos Syndrome (EDS). However, after seeing the geneticist, she determined that while I absolutely have hypermobility and meet most of the criteria for EDS, she didn’t think that EDS completely explained my symptoms and physical presentation, especially given the fact that I have frequently recurring acute flare-ups of joint pain, fevers, and nausea. She said this isn’t characteristic of EDS and that all of the joint swelling seen in my extensive series of MRIs is indicative of inflammatory arthritis. I had psoriasis of my elbows, knees, and scalp in 2009-2011, but with topical medicated ointment and my celiac diagnosis and subsequent gluten-free diet, it resolved and I pretty much forgot about it.

The rheumatologist reviewed 15 MRIs and my dermatology reports and amended my diagnosis. Psoriatic arthritis is an autoimmune inflammatory condition of the joints and skin. It is treated with injectable medications that combat the inflammation and suppress the immune system so that its attack on the body is attenuated. As such, the risk of infection increases and the treatments come with a host of other potential risks like skin cancer and multiple sclerosis, but with routine checkups with the appropriate specialists, most people sidestep these problems. Unfortunately, given my health comorbidities and my highly reactive body, medicating me is not so simple. Psoriatic arthritis patients are usually started on methotrexate, but my liver enzymes are much too high at this time to tolerate that medication safety. Given my body’s widespread hyper-reactivity, it is unwise to assume the highly potent injectables will be readily tolerated or effective. I will probably need to consult with the geneticist or an allergist to figure out if we can determine my body’s compatibility with the medicine prior to injecting it. It’s one shot every two weeks, and once it goes in, it’s not like you can retrieve the medicine back!

The dust kicked up by all this new information and its ramifications has not yet settled. I’m not sure how I truly feel about any of it. There are still many unanswered questions, tests to be conducted, and research to gather. I’m anxious about the genetic and endocrinological testing and its potential findings. I’m nervous that I won’t tolerate the necessary medications for the psoriatic arthritis. I’m sad that I’m often in so much pain, and frustrated that finding answers and getting effective treatment is a long and meandering journey. Yet despite all of this, I am a believer that while finding answers about yourself (medical diagnoses, psychological, or otherwise) can be a painful process, it can also be one that ultimately leads to knowledge, understanding, and better ways to cope, feel well, and feel happy.

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