Growing Deeper Roots: My Story of Invisible Illness

When I got my POTS diagnosis in July, I applied to the Vanderbilt Dysautonomia Clinic to try to find some answers. Since Dysautonomia is a field of medicine that is underfunded, under-researched, and fairly new as a diagnosis, there are not a lot of specialists, research clinics, or POTS-literate physicians. The clinics and specialists that do exists are swamped with patients and the wait-list is months long. I applied in July and my appointment was March 10th. My incredibly supportive parents drove me out to Nashville last week for my appointment at Vanderbilt Dysautonomia Clinic with Dr. Robertson. We spent the night with my aunt and uncle in Franklin and then arrived at the clinic Thursday morning at 7:30. First I had a blood volume test. This consisted of using an IV line to take blood samples, administer a radioactive substance into my line, and then take more blood samples in 6 minute intervals. The purpose of this was to measure how the radioactive substance was diluted in ...

One of the nicest ways that people have shown me that they care about me since I have been sick has been with investing their own time to learn about my illness or treatment. Since I have decided to apply for a service dog, several people have sent me stories about service dogs and, as someone who loves pictures of puppies, I've really enjoyed this. So I thought I would share the joy: A story has been circulating about a bride and her service dog. I really like this picture because I know how important my dog will be when I finally have him/her and I know that he/she will be by my side for every important day and I can't wait to have such a strong bond with my dog.  http://www.wusa9.com/story/news/nation-now/2016/01/15/touching-photo-captures-bond-between-bride-and-her-service-dog/78839078/ http://www.onegreenplanet.org/news/loyal-service-dog-to-wear-cap-and-gown-at-his-humans-high-school-graduation/ I particularly like to read articles that help explain tha...

As it is with every New Year, my newsfeed has been covered with reflections of 2015 and resolutions and promises for 2016 this week. As I watch the hardest year of my life come to a close, I can't say that I am even slightly sentimental. 2015 was an asshole and I'm not going to miss it at all. I walk into 2016 beaten and bruised from all the bullcrap that 2015 put me through. Though I am trying to be hopeful for a better year, I am facing 2016 with the reasonable expectation that it could be just as challenging, but this time I'm a bit more prepared and a heck of a lot stronger. So I've made a decision.  As the longevity of my disability has become more and more apparent, I have begun making plans revolving around my new normal. I started with the investment of the wheelchair. I had to plan a way to make it through the semester at school with my limited independence and mobility. Now, I'm looking more than a few months ahead. I'm coming to terms with the card...

Last night, our Peer Mentor boss took the team to an outdoor school called Echo Hill. We went to this out door school in August to partake in some team building exercises. This time we went at about 6 pm and got to watch the sun setting on the Chesapeake. We played some games and went on a night hike, ending the evening on the beach cooking s'mores. It had every ingredient for a lovely fall night.  But, my foot still hurts whenever I walk on it and my heart and head aren't too good with the whole hiking thing. I was managing fairly well but I had to take breaks to sit and avoid syncope episodes. I was with Alex, a good friend of mine who is also a peer mentor, and he helped me up and down every time I needed a rest.  When I stopped for the longest period of time, the guide came back to me and asked if I was okay. I told him that I had a heart condition-cause explaining my disability isn't always my favorite conversation and it often doesn't even help clarify anythi...

It has been a beautiful week here in Chestertown! We have had gorgeous Fall weather all week and I'm loving it. But, when I said that I love Fall, I didn't mean that I like to fall. But I did. And I hurt myself. Wednesday night I had a bit of an issue. I got out of bed to go to the bathroom and I fainted/tripped and fell hard to the ground. My foot rolled and made a loud popping noise (according to my roommate, who was awaken by this noise and my fall). Then, it quickly swelled to look something like this: I'm no doctor, but I'm pretty sure that that bump isn't suppose to be there. Just a hunch.  So I iced it and went to the Health Center on campus in the morning. I don't remember how much I have talked about the Health Center at WAC but there are great! I usually see PA Beverly Clarke and she knows my whole situation as well as I do. She is a God-send and has made this whole process much easier. Anyway, she sent me to the hospital for X-Rays. At ...

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...