Hey folks! Gracie has invited me to join her with a glimpse into life with chronic illness. When I was diagnosed I didn’t know that a woman I’d only had a handful of conversations with would become my spoonie sister. Gracie seems to understand the symptoms, complications and emotions that come with this in a way that few do so I appreciate the opportunity to share.
One of my favorite characters as a kid was Dorothy Gale. I had to have the braids, the dress, and even made my poor dog play Toto (he was an unusually patient little mutt). Looking back, I’ve realized that everyone faces their own version of the yellow brick road with lions and tigers and bears (…oh my!). I never thought mine would turn into something as simple as getting through Halloween.
Five years ago I was working 60+ hours a week at a job that had brought me so much joy. I loved work. It gave me a sense of purpose and I never imagined NOT being able to be so productive. On October 31, 2012 I was diagnosed with Postural Orthostatic Tachycardia Syndrome. Since I have had dizzy spells for my entire life and been known to faint on occasion, we didn’t think this would be much of a game changer. We learned that I should be able to keep it mostly in check with fluids, medications, and exercise– I wasn’t too thrilled by having to start that part but I figured I could handle it. We even thought we had found the underlying conditions and were getting them under control for a couple months.
Since I was diagnosed on Halloween it has become the day by which I track my progress. By October of 2013 my fainting spells seemed to have become more frequent. In 2014 I was experiencing such overwhelming fatigue, brain fog, and weakness that I had to leave my job. 2015 brought on the symptoms of bone pain and hair loss. And we started fighting this as an autoimmune disease in 2016, which came with insurance denying immunoglobulin treatment and all of the appeals.
So here we are, Halloween 2017 and I feel crippled by a Halloween parade and a batch of cookies. Once again I spend my weekend glued to the floor because I feel like I’m going to fall off of the couch. I’m still unable to go back to work, which leaves my parents stuck with all of my medical bills *I don’t have enough space in this post to get started on how amazing and supportive they are*. All I’m left with are tears more often than I care to admit.
Don’t get me wrong. These guys are absolutely worth being down for a week. Just look at how cute our little Shine and Jack Sparrow are.
So for now it’s parades, and cookies, and tears… oh my! But we’re still trying. Between the most recent discovery of Autoimmune Autonomic Ganglionopothy and the advancements in subcutaneous immunoglobulin, Dr. Goodman thinks we have enough to push for treatment again. Here we go on appeal number one… again. Wish me luck!