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 ...

I haven't posted on my blog in a very long time. I promised myself when I started this blog that I wouldn't neglect it. When I started it in the depths of my illness, when I was the sickest I'd ever been, I found that blogging was therapeutic and cathartic but it was also hard. So I promised myself that no matter how busy or tired or stressed I was, I would make time for my blog. I knew it was good for me. But I made another promise. I promised myself that I wouldn't let my blog become an echobox of self pity or whining or complaining or self-indulgent gloominess. I was going to write from a place of honesty but I was also going to write from a place of hope. Lately, these two promises have been in competition with each other. During my winter break I celebrated my first Christmas with my illness. My first New Years. I had a hard time balancing my health and my strong desire to celebrate and live normally. I'm still having trouble accepting my new normal, espec...

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...

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 ...

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...

One of the biggest hurdles for people with dysautonomia is the lack of research, funding, and awareness about the spectrum of disorders. Although this invisible illness affects millions of people worldwide and targets people of all ages, races, and genders, very few people, including medical professionals, know much about the it.  To help combat this major issue, Dysautonomia International is hosting a Tweet-A-Thon today to spread awareness.  Check out their  website  for more information about the outreach movement!  Here are some of the trending tweets!  I also tweeted this image because it is a very concise and accurate graphic about my specific form of dysautonomia. I hope you are all inspired to Tweet about Dysautonomia to help spread awareness and work towards more research and better treatment!

I guess I spoke too soon. It seems like every time I have a victory, my body reminds me that I'm sick. Last week was lovely. I was feeling strong and able-bodied. I fainted Friday but I got back up and had a nice weekend with my family and friends.  Sunday evening, I could feel my body starting to tire. With thesis deadlines, the show coming up, and the excitement of feeling even just a little bit more normal, I ignored my fatigue.  Monday was an exciting day for me. One of my favorite political journalists was visiting my campus and my Media and Politics professor, who is also my thesis advisor, was hosting a dinner for him. Being the blessing of a professor that she is, she sat me next to him and I got to pick his brain for a three course meal. As I sat there talking to him about Trump-fever and Jeb Bush's pathetic campaign, I could feel my mind beginning to fog.  I got through the dinner and his talk that followed, but most of his talk was blurred in my mind. I couldn'...

Today I had a follow-up visit with my Frederick cardiologist and the electrophysiologist that serves their office. He reviewed the results of my last Holter monitor and we updated him with all the new information we had about the pituitary and POTS. After reviewing my Holter monitor and doing an orthostatic test in the office, Dr. Sinha confidently disagreed with my POTS diagnosis. We showed him the work up from the Tilt table test at Johns Hopkins and he told us that it was not performed for a traditional POTS test. Great. His opinion? Neurocardiogenic syncope, the same diagnosis I was given in March. However, unlike the 2 cardiologists in Chestertown who wanted to load me up with Midodrine and ignore the possibility of any other cause, Dr. Sinha wants to look further into the cause of this syncope. With a diagnosis like neurocardiogenic syncope you have an explanation of the physics behind the symptoms but not necessarily a cause for the mechanism causing this abnormal reactio...

Yesterday I had a migraine from hell and two syncopal episodes. I ended up spending most of the day resting and trying various things to remedy the migraine, with little success. Finally, I fell asleep at around 5 this morning.  Today, I woke up with a slight ache but by this afternoon it was gone. Feeling a little better, my mom and I decided to try some water aerobics. We've read online and heard from other POTS patients that water jogging can be a helpful exercise to recondition your body to vertical exercise and orthostatic tolerance. My aunt and uncle live down the road from us and have a pool so we spent the afternoon working on some water exercises.  I started by speed walking the border of the shallow end of the pool. Using my super awesome Fitbit Charge HR, I monitored my heart rate. Because this speed walk was a warm up, I aimed to keep my heart rate at "Base Pace," which is 145 bpm for me.  Then, I jogged in place for 30 minutes. I wanted to k...