Growing Deeper Roots: My Story of Invisible Illness

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 Maryland General Assembly passed it's first Lyme Disease bill during 2016's legislative session. I was lucky enough to have an internship in an office in the MGA this semester and spoke with the sponsor of the bill, who is also my Frederick County district representative. Delegate Kathy Afzali represents District 4 of Maryland and sponsored the Lyme Disease - Laboratory Test - Required Notice Act, which requires health care providers to provide notice of potential inaccuracies in diagnostic tests. The goal of this patient-driven act is to ensure that patients are receiving accurate information about the tests used to diagnose Lyme disease, hopefully significantly decreasing the number of misdiagnoses.  Today, only a month after the MGA Sine Die, Maryland Governor Larry Hogan has signed this Lyme Disease - Laboratory Test - Required Notice Act into law.  Taking affect in October, this law will require health care providers to provide the following disclosure to...

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...

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 ...

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...

GUYS! I did something! I did a thing that makes me feel a little bit more whole.  Yesterday, after going a full week without fainting, I walked to class on my own. I've been practicing walking with my friends around to help me if I get weak or dizzy but yesterday I left my suite and walked about 600 yards to my first class. I needed some help, for my own peace of mind, up the hill of Cater Walk to lunch and across the street to work but other than that, I was independently mobile.  A year ago, this would have been a regular Friday. This wouldn't have even crossed my mind. But 5 months ago, I wasn't sure that I'd ever be do this again. 3 months ago, I wasn't sure I'd go back to school. 3 weeks ago, I thought this campus, with all its hills and bricks, would be the death of me.  But I did it. Even just for a day, I walked on my own and had a taste of normalcy again. What was even more amazing, was how many people knew how much of an accomplishment this...

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...

              Long before my life was turned upside down-or rather, sideways-from my illness, I knew that I wanted to go into public policy or law to focus on health care reform. I've been interested in the ethical and public interest components of medicine since taking a freshman seminar called Ethics of Globalized Medicine. I suppose, since I signed up for the course eagerly, my interest may have started even before then.               Since then, I have taken several other classes that delved into the inner workings of health care and medical law. While we often debated the legitimacy and ideology surrounding the Affordable Care Act, more often than not, our discussions surrounded the shortcomings of the American Health care system that no one could deny: our wasteful spending, the gaps in coverage, the profit margins within the industries. As much as I have learned in the classroom about these issues, I hav...

I've been into yoga for a couple years now. I can force myself to run or swim for exercise but yoga is really the only exercise that I can honestly say I enjoy. It helped me get through a lot of stress and anxiety in high school, it's helped me with my IBS and GI symptoms, and when I first started having syncope it was one of the only things that made me feel normal. But as my symptoms and condition got worse and worse, I wasn't able to keep up with it.  Today, my mom and I went to my first chair yoga class. We went to Sol Yoga in Frederick. ( http://www.solyoga.org/ ) Mom had been there a few times for drop in classes and she used to go to the Sol Yoga in New Market for Happy Hour Yoga (yeah, that's a thing, it's also one of the things I can't wait to do when I turn 21). I was a little nervous cause it had been weeks since I had done any yoga and I had never tried Chair Yoga. I had no idea what to expect.  There were about 10 of us in the class. We each ha...

So it has been another roller coaster of a week. And you all know how I feel about roller coasters.  After Monday's half productive half syncopal session of PT, I was given a lot of fluids and more medication.  Tuesday morning I was told that we were not at the point of discharge/transfer because my level of abilities and baseline health were too low. This was very upsetting because I felt ready. And I knew that if they would give me the chance to work with PT and OT, I could show them that I was ready. However, I was only ever given 30-45 minutes a day with them so I could never really prove my potential. To make it all worse, they never even saw me on Saturday, Sunday or Tuesday. This series of events made me very frustrated and angry. There were many tears of frustration.  Yesterday we were told that between the OT and PT recommendations and the insurance companies utter tomfoolery, I would probably only be approved for sub-acute rehab. Sub-acute rehab is basica...

The other day, I fainted in PT. I had had a really good session, making it up to 80 degrees on the tilt table and tolerated it for 13 minutes. However, while trying to sit up after the session, I fainted, giving one of the med students on my case, the OT, the PT, and my mom and sister a good scare.  While I was trying to recollect myself, the group discussed how they could tell I was about to faint. My mom said her classic line, "I can see it in her eyes. They lose their sparkle." My OT said she could see it in my breathing. My PT said he saw it in my heart rate. But they all agreed that my eyes go a little duller right before I pass out. They even compared me to the Genie in Aladdin.  Our discussion about my fainting eyes got me thinking. I've learned a lot during this process and one of the biggest things I've noticed is how people respond to this tumultuous journey. You can always see it in their eyes.  When I bring up Lyme to the cardiologists, their e...

When things started to get bad for me and I started to lose parts of my life to my illness I read up a lot about my symptoms. I read a lot about Lyme and POTS and Pituitary growths. I read medical records and reports. I read everything I could find online about treatments and illnesses. I read news articles about new research. And I read personal blogs. I learned a lot from experts, researchers, and patients. I came into this fight armed with information and knowledge so I could be my own advocate. However, nothing could have prepared me for what would really happen. Nobody told me how hard it would be. I knew I would have needles and IVs shoved into my arms and back and legs and everything. I knew I'd be peeing in a commode. I knew I wouldn't be able to shower. I knew I would be uncomfortable and sometimes in pain. I knew it was going to be a long recovery. But there were many things that no one warned me about. No one told me I would feel guilty. I never imagined that ...