Growing Deeper Roots: My Story of Invisible Illness

I've written and spoken a lot about the difficulties of getting diagnosed. I spent years suffering from various GI symptoms before my fainting spells got severe enough for me to be diagnosed with POTS (and then diagnosed with several other types of dysautonomia). Even once I started fainting daily, it took me four months to hear the word "dysautonomia."  That was frustrating.  Know what was 10x more frustrating? Coming out of the hospital, being told that if I wanted to ever feel normal again I would have to go through rehab and physical therapy with a specialist who was familiar with dysautonomia and how to treat it, and then being told that there were only a handful of those doctors and none of them were taking new patients.  I was in the same city as one of WORLD'S BEST POTS doctors, but I was 20 years old and he was a pediatric specialist who wouldn't accept me as a patient. I was less than an hour from another POTS specialist, but his hands were alread...

I don't know if I ever really understood "living for the weekends" more than I do this summer. Last summer I worked at an all day summer camp. It was exhausting and sometimes frustrating but I really liked it. I felt like I was getting a lot of fun exercise and vitamin D. Then, I had money to spend during the weekend. I could drive to my boyfriend's house and visit him and I got to spend free time with my friends. I was starting to experience the fatigue, muscle pain and GI symptoms that have since wrecked havoc on my body, but I was still functional. I was still independent. During the school year, I had a busy stressful schedule, but I loved every minute of it. I love learning and I loved all my jobs at school. Weekends were fun, but so were weekdays. I had control of my life.  That's not what this summer is like. This summer, I spend every day researching self prescribed physical therapy, crafting an anti-inflammatory diet, and trying to work towards a more ...

So it has been another roller coaster of a week. And you all know how I feel about roller coasters.  After Monday's half productive half syncopal session of PT, I was given a lot of fluids and more medication.  Tuesday morning I was told that we were not at the point of discharge/transfer because my level of abilities and baseline health were too low. This was very upsetting because I felt ready. And I knew that if they would give me the chance to work with PT and OT, I could show them that I was ready. However, I was only ever given 30-45 minutes a day with them so I could never really prove my potential. To make it all worse, they never even saw me on Saturday, Sunday or Tuesday. This series of events made me very frustrated and angry. There were many tears of frustration.  Yesterday we were told that between the OT and PT recommendations and the insurance companies utter tomfoolery, I would probably only be approved for sub-acute rehab. Sub-acute rehab is basica...

When you fill out patient forms in doctor’s offices, especially when visiting a specialist, there is often a reoccurring question, “When did you last feel normal?” I’ve always struggled with this question and it wasn’t until I heard the words “Chronic Lyme” that I understood why. My Lyme disease story starts in 2000. I was only 5 years old and I can only remember bits and pieces of my initial contraction, the rest of the story is filled in by my parents. Everything went right for an early diagnosis; my mom saw the tick on my eyebrow, I developed the bull’s-eye rash, I went to the doctor immediately. But there was one big hurdle. It was allergy season and my primary physician at the time was convinced that it was just a case of allergies and I was given a dose of Benadryl. Still, my body was persistent in telling me that I had Lyme. A few weeks after my first visit to the doctor, I developed Bell’s palsy in my face and had severe vision and hearing issues. My mom, the advocate she ...