#chronicillnesschallenge

#chronicillnesschallenge {{{Day5Video1 see other days today posting more videos shortly!}}} (For days 3-5! (at Parachute, Colorado)

These are just clips to more topics #pregnancy dealing with #chronicpain which I eill be touching more on soon! #chronicillness #chronicillnesschallenge {{{Day 2!of 30}}} (at Colorado)

Im gonna do this next month!! #chronicillnesschallenge (at Colorado)

To start with, when I was 5, I had encephalitis, and I was hospitalized for close to four weeks, with the first week in an induced coma - it was the very early ‘90s though, and no one was testing kids for autoimmune diseases or more serious things along those lines, and with no children’s hospital in Connecticut at the time (Connecticut Children’s Medical Center would open a couple of years later), there weren’t necessarily specialists to focus on things like that in kids. I recovered though, not too much worse for the wear (some death of grey matter in my brain, but surprisingly, no loss of intelligence, language, or the like, and only some left sided deficiencies, and the need for glasses two years later). Time went on, and about ten years later, the summer I turned 16, I started getting weird rashes, and pain in my hands and feet. I was referred to an infectious disease specialist, who ran innumerable tests, and then started me on medication for Rocky Mountain Spotted Fever (the west coast version of Lyme Disease). Three weeks later though, it was determined that I did not in fact have RMSF, and I was referred to a rheumatologist. And thus began the tests for every autoimmune disease under the sun (I most closely fit the profile for Bachet’s Syndrome, except for not being Asian, or a male). I was diagnosed as having vasculitis, and was started on prednisone, which began (slowly) helping. That December, I had an adrenal hemmorrhage, and saw a rheumatologist at Columbia Presbyterian in New York, who corroborated the vasculitis diagnosis. I continued the course of treatment, eventually getting off all medication by my sophomore year of college. That was short lived though, as three days before moving back for my senior year of college, I had a Mallory-Weis tear (my esophagus tore), and it was discovered that I had a low platelet count, in addition to hypothyroidism.  I was also diagnosed with Antiphospholipid Antibody Syndrome, which, I was told, typically develops into lupus. Over the next year, I began taking blood thinners, and plaquanil, an anti-malarial used to treat APLS. Fast forward to the summer I turned 25, and I woke up one morning with hives on my arm and hand. Over the course of the day, they spread to the rest of my body, symmetrically, and Benadryl was doing next to nothing. Over the next couple of days, the hives worsened, and I began having constant chills (it was August, and I was wearing long sleeves and still cold), and intense nausea and stomach pain. I was admitted to the hospital three days after the hives started, because I was vomiting every few minutes, and it was believed that the hives had spread internally as well (I have a wonderful GI doc, who took one look at me, talked to me about what had been going on for about 5 minutes, and then let me sit in his office for half an hour while he arranged for a bed for me in the hospital, instead of making me go in through the ER and wait who knows how long). Over the course of that hospitalization, we began to again discuss a lupus diagnosis, but I still tested negative for all relevant lupus bloodwork. A couple of months later, I was in the hospital again, with adrenal crisis, I had gotten a bout of food poisoning, and not taking my prednisone for just one day, cause my cortisol levels to plummet, taking my blood pressure along with it. It was at this point, with everything that had been going on over the previous three months, that my rheumatologist said he was confident enough to diagnose me with lupus, I had more than enough markers, and more minor drugs weren’t helping (he had taken me off the plaquenil, and by that point, the prednisone was really only keeping my cortisol levels up, not keeping the inflammatory processes down). 

How haven’t these illnesses affected me. For one, I was on my way to potentially have a career in theatre, stage managing my fourth show off-Broadway when I got diagnosed, and due to the fact that I had been working a day job, and commuting into the city at night, effectively sleeping three hours a night, that was no longer possible. I’m also not able to work as much as I did before, any more than six hours a day at my receptionist “survival job” completely wears me out and lays me up for days. I have to continue working at least for the time being, as I have insurmountable student loans from both college and grad school, but it’s hard for me to find the time and energy to look for and get a new job that matches what I went to school for. I could go on forever about how my life has been affected; people not understanding invisible illness, back in high school, when my peers judged me for “getting away with not doing work” (my dad was the chairman of the Board of Education, so kids thought I was getting a free pass for that reason, not because I was hospitalized and out of school for a month, and since I was a good student, teachers didn’t push me to finish all assignments), etc.