Growing Deeper Roots: My Story of Invisible Illness

It's been almost 2 years since I have posted to this blog. Believe me, I have tried. I have about 25 saved draft posts that never got published because they ended up sounding like the same repetitive story. Another pattern of rumination. Another soliloquy of self pity.  That's because the last three years of my life have been fairly cyclical and unchanged. I have a few good weeks where my symptoms plateau and I faint only once or twice a month. Then, a storm hits. I get a cold and I crash into a regressive phase where I faint daily, injury myself, get frustrated, and then slowly move back up to the plateau.  I have been tired and frustrated as I put grad school on pause, as I continue living with my parents, as I take three steps forward 2 steps back. So I stopped blogging and started to do what I could to move forward, pretending I am not sick, and working on ways to get healthier like a normal 24 year old. But still on pause.  But over the last few weeks, ...

As you may remember, I am on the (seemingly endless) waiting-list for a service dog. The organization I am working with is called Canine Partners for Life. The only thing that makes me feel better about how long and excruciating this wait is, is knowing that I’m waiting for something great and that as I’m waiting, K9P is getting better at training and matching dogs. Learning about this process has been such a joy. It started in August of 2015. I researched many organizations that worked with alert dogs and choose K9P because they had the best reputation, highest success rate, friendliest staff and alums and community, and a great structure to their organization. Training dogs can be difficult and training them to do tasks for people with disabilities is an art. K9P provides and sustains professionally trained service and companion dogs by using positive reinforcement. They train their dogs to meet the specific needs of individuals and the environments in which they are liv...

Yesterday was my last day of classes in undergrad. I will be crossing the stage at graduation on May 21st and will promptly begin my post-grad life, searching for jobs, studying for my GREs, and researching graduate programs. What a sweet time to be alive.  But with my celebration, I feel a strong sense of dissatisfaction. As I collect my cords and regalia, I am painfully aware of how empty parts of my college experience is.  I never studied abroad. I didn't finish my independent research for Cater Society.  I dropped my economics major.  I have a long list of trade-offs I made for my health and while listening to so many other soon-to-be graduates recount their undergraduate experiences, I am hyperaware of everything I missed out on.  Sometimes I can't resist obsessing over what I could have done differently over the last three years; should I have stayed for all 4 years even though it would mean $25k more debt? Should I have taken time off when I ...

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 ...