Growing Deeper Roots: My Story of Invisible Illness

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...

As I mentioned a while back, I was in a senior thesis production this semester. It was a two character play called Running by Arlene Hutton. I took on the role because I needed to have a creative outlet while pushing through my last year at WAC. It was a tolling process and there were many times, like two weeks ago when I could barely stand without fainting, when I thought that I had made a horrible mistake when I committed to the show. I was terrified of fainting on stage or falling into a brain fog period while performing. I took a major gamble.  The crew worked to develop a plan for every possible situation that could arise. I had an understudy ready to take my place in the worst case scenario and the ushers and house managers were alerted to the possibility of a potential episode. I had a heart monitor on the whole time and the stage manager monitored my heart throughout the performance, with a threshold in mind for an indiction that I was symptomatic. We even had a "fainti...

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...

Sometimes, the hardest part about being sick the way that I am is that on most days, I don't look sick. I suffer from an invisible illness. Those who I haven't told, don't know that I'm sick and those who do know, rarely understand the severity.  In my last few months, I have felt misunderstood, doubted, and judged because I can't do what a healthy person can...and yet, I look healthy. Managing my invisible illness, neurocardiogenic syncope (whether from a virus producing POTS or from my pituitary macroadenoma) would be significantly easier, if people understood it. Unfortunately, I have rarely met anyone who has any familiarity with dysautonomia.  Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The autonomic nervous system controls "automatic" functions of the body like heart rate, blood pressure, digestion, pupil dilation and constriction, kidney func...

Thursday I moved back into college. Although it had only been 3 months since I left, things feel immeasurably different. I feel immeasurably different. I moved into a suite style dorm with three of my best friends: Erin, Anna, and Cat. With every worried thought and dreaded moment about returning (see last post), I reminded myself of how great living with these girls will be. They (the universal 'they') tell you that you won't keep your 'freshman orientation friends,' but they haven't met these baller chicks.  Erin is everyone's pseudo mom. She will be proud of me when I'm doing well and love and console me when I'm down. I can already see her cheering me up even when she doesn't know I need it.  Anna is my school version of Kate. She can be weird and goofy with me and then turn around and give me the best advice, and hugs, a girl could ask for. She is, and always has been, great at looking out for me and I'm 98% sure that she...

We finally found a PT!  After asking around on the POTS Facebook page, I found a physical therapy office in Jarretsville, Maryland called McLaughlin Physical Therapy. The owner, Kevin McLaughlin, has 6 or 7 POTS patients and is pretty familiar with the exercises and therapy needed to help work against the mechanisms of POTS or neurocardiogenic syncope.  In his evaluation yesterday he determined that my posture could be improved to help the blood flow to my brain. Apparently my shoulders turn in too much, but since I am young, we can train them not to. He says this can happen from being on the computer, reading, or leaning over too much. I guess my years of leaning over a book are catching up to me.  He also noticed that my right shoulder is pulled back abnormally, indicating a weakness in my rotator cuff. I explained that in May 2013 I ripped my rotator cuff. I was hoping that he wouldn't ask how, but of course he did. Sports? Nope. Lifting something heavy? Nope. R...

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...