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...

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 ...

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...

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...

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...

I have finished my first week of classes post illness (I say post, as if I'm out of the woods, I'm not). I'm only taking 3 classes this semester since I am now working on my thesis. Sooo...that's still 20 credits. Whoops. Luckily, classes are interesting. I'm taking my senior seminar, environmental economics, and congress and the legislative process. I'm also auditing media and politics because it just sounds so interesting and I'm a huge dork. It's very hard to get around campus on my own. I'm not confident about walking without the chair alone so I'm still in it most of the time. While this makes my arms look fantastic, I'm tired almost all of the time. Luckily, I have possibly the best group of friends in the entire world. There have been numerous times when I have just gotten too tired to wheel back to my dorm and I've texted my friends and they've dropped everything to come help me. There have been a similar amount of times ...

As I mentioned, I have returned to WAC a week early to train as a Peer Mentor. The Peer Mentor program is designed to match upperclassmen with first year students during orientation and the first semester so that the first year students have someone to guide them through their transition. This is my second year as a PM and I really enjoy it. Two of my suite mates and a bunch of my other friends are also PMs, so training and orientation is a blast! We started training on Friday. Then, on Saturday, we went to Echo Hill ( http://www.ehos.org/ ) for a bonding retreat. Now we are back in the classroom, training until the freshman arrive on Thursday. I've been using this time to practice in the wheelchair and experiment with my walking abilities around campus before everyone else arrives. I'm getting pretty good but there are still many of parts on campus that are too steep for me. Peer Mentor training is surprisingly fun and exciting. Although we have several boring sessions a ...

My last day of PT was Wednesday. Kate and Hannah drove me since my mom has returned to work. I had a really good session (especially compared to my last, when I fainted) and I spent the entire time talking with Maddie, the assistant, and Kevin, the owner. We talked about the ways I can continue working towards progress at school and they congratulated me on the progress I've made in PT. When I left the hospital, I was barely walking and staying upright on my own. It took us a while to find Kevin and McLaughlin Physical Therapy but when we did I started seeing some improvement. My improvement is most apparent in the analysis of my tachycardia. My resting HR is falling and my flares of tachycardia are becoming much less extreme. After the session and my "graduation," I got a t-shirt. It's pretty awesome. Then, Hannah and Kate drove me home and fed me chocolate covered bananas, as real friends often do. 

The other day my friend Kate asked me a question about how I was feeling. I'm so used to spouting out my BP or HR in response to "How are you?" or giving a generic "Oh, you know, been better been worse" or the ever so popular "Fine, how are you?"  But Kate was more specific. She asked me how I was doing with adjusting to the new phase of all of this. The phase where we've stopped looking for a solution to my syncope and started working to adjust and manage it. Learning to live with it. Creating a new normal.  I hadn't realized it until that point, but I have been feeling frustrated. When I was first diagnosed with the tumor I was scared, but I was determined and hopeful. I've lost that. In the last few weeks I have lost hope of an independent existence or a normal life without fear of fainting. I've stopped saying "When I get better..." My mindset has shifted from defensive action to maintenance and survival. People ...

Today, I'm feeling a little defeated. Maybe I got cocky or too comfortable with the last few days of normalcy. Monday, Tuesday, and Wednesday were really good days for me. I had a slight headache on Monday, but other than that, I have been fairly non-symptomatic. I started doing some normal things, shopping with Kate, going to the dentist, going out to dinner. I even went to see Jim Gaffigan at the Wolf Trap. I've been feeling pretty good. Until today.  I knew when I woke up, with a BP of 78/68, that it wasn't going to be as successful of a day. My stomach was hurting, I felt a little foggy, and by noon, I had fainted.  Still, I went to PT with the hope of getting my energy level up and leaving the session feeling better. Well, I made it half way through the session before the squats got the better of me. This was the first time I've ever fainted in PT (this office, at least). Kevin, my physical therapist, was right there with an additional spotter so I did not h...

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...

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...