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...

Writing about my journey with chronic illness has been both therapeutic and difficult for me. Many times, processing my pain and recovery is more easily done when I start writing about it. Other times, the stage of recovery in which I have found myself is so full of complex emotions and thoughts, that stitching them into words coherent to another person, even one on a similar journey, is just impossible.  So I have been upfront when writing this blog, letting you know that my posts might come more sparingly as the journey's direction changes. When I started going to therapy and working on the grieving component of my illness, I was honest with you, letting you know that I wasn't always going to write about the process, I would have to keep parts of it private. That's the stage I was in most of this spring, sorting my own thoughts out and wondering if I'd ever be able to put them into words. Or if I would ever really want to, if I would want to open that story up to...

The last week has been a complete whirlwind. So much has happened and I'm so tired that I can barely recount it all. The pictures are barely uploaded and I haven't even unpacked but it has been so long since I have updated my blog that I felt it was worth a summarized post.  Last Saturday, May 21st, I graduated college. With many many mixed emotions, I crossed the stage and received my diploma for a BA in Political Science and minor in Economics, magna cum laude. As I've written about on here not long ago, my early graduation came with many bittersweet considerations and it was very difficult for me to remember the triumphs of the day. I tried my hardest to remember that my graduation, a year early, was not to be taken for granted, as this time last year, I was uncertain that I would be returning to school at all. I tried to remember that graduating from college is a distinct accomplishment under any circumstance but my situation should have made the occasion even sweete...

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...

When people talk about the "isms" in society, racism and sexism are usually the first that come to mind. Later in the list comes agism. Often forgotten and misunderstood, is ableism.  Ableism: Discrimination in favor of able-bodied people.  In the last 9 months of my life, I have thought a lot about ableism. A year ago, when I whole-heartedly identified myself as "able-bodied," I never even considered the nuanced meanings of "disabled" or "abled." I assumed that, like the other "isms" I've learned about or experienced, the categories were cut and dry. You were either "able-bodied" or you were "disabled." I never imagined that I would one day live in the hell that is the grey area.  On my worst days, I am undeniably disabled. I am in bed or, if I must go out, I'm in the wheelchair. On my best days, I am walking on my own and participating in society like an able-bodied 20 year old. That lasts for about ...

"Everything happens for a reason." -Someone who has never mourned.  This dangerously misled and shallow misinterpretation of life is nothing less than emotional, spiritual, and psychological violence. It is nothing less than utter bullshit.  Whether you are mourning the loss of a loved one or a failed relationship or your lost health, this is the last thing you want to hear but it will be said to you. Someone out there with their incredibly naive perception of reality and Pollyanna outlook on your tragedy will utter this bullshit in response to your pain.  "Everything happens for a reason," "God has a plan," "This pain will make you a better person," and all your other painful paradoxical platitudes will not make it easier for me to watch my life shift in response to my lost health. All you are doing with these phrases is replacing my grief with unsolicited advice.  Now, I'm not saying that I do not recognize that I have grown immens...

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...