http://www.slightlydistresseddamsel.com/
After seeing rheumatologists, GPs, physiatrists, PTs, sports medicine doctors, geneticists, neurologists, pain specialists, endocrinologists, and orthopedic surgeons, I was still not getting anything useful from anyone. I had a posse of residents following me around the hospital and calling me 24/7 to ask me questions. Nurses would make little cracks about “Erica and her entourage.”
I was in so much pain that I was willing to try anything, including hypnotists and private meditation counselors. But it was finally decided that I had tried enough, and the only step left was to go to Johns Hopkins Hospital. I managed to get an appointment with the top pain specialist in the country, and in July of 2013, he diagnosed me with Chronic Myofascial Pain Syndrome, Hypermobility-Type Ehlers Danlos Syndrome and hypothyroidism. With these diagnoses he told me, as gently as he could, that there was a good chance it would never get better, and that there was a serious possibility I might never work again…
Not many people can relate to all of this. The fear, the immaculate planning, the general anxiety, the stuff you have to put up with from doctors and the judgment from people in general. I lost many good friends in this process—even people I thought I was really close to. The last two years have been gruesome, not just physically but psychologically. Watching all of your friends grow in their professions and their relationships—their lives overall, really—is hard to watch from your bed…
What to Pack When You Need to Go to the ER…
When I went to see my geneticist at GBMC, we could tell some of these were allergic reactions and some were something else, so she ordered me a Genelex Youscript Test. It’s a pricey one, but luckily my insurance covered it. It’s a swab cheek test that analyzes how well you metabolize certain drugs. It’s very confusing to read, even for most doctors but a lot of the reps there are very good at explaining to the least science-y person ever. But, no surprise, I was an “intermediate metabolizer”/slow metabolizer for the phenotype that includes many painkillers and antidepressants…
All Things Chronic 