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, ...

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...

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 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'...

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...

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 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...

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 ...

I'm on a roller coaster. And for someone who faints at the slightest increase of altitude, this is not good.  BUT! I have an update.  After many tests and a hormone treatment/analysis my team here at Johns Hopkins Bayview Medical Center has decided that removing the tumor is not our best option. From here they have diagnosed me with POTS.  POTS is a type of dysautonomia that is characterized by orthostatic intolerance and excessive tachycardia. POTS stands for Postural Orthostatic Tachycardia Syndrome and affects over 1 million Americans. While there is no definitive known cause for POTS, many believe that viral infections can cause this malfunction of the automatic nervous system. One of the leading viral infections to cause POTS? Lyme disease. (I think I've seen this tree before) While the name and credit of POTS is relatively new (1993), the syndrome has been around for a while under many other names.  Treatment of POTS is difficult because it is o...

Remember when I said that I was excited for the tilt table test? Remember, I thought it would be fun? I was wrong. I was very very wrong. So they strapped me to a table and let me lay flat. Then they recorded my BP and pulse. Then they tilted me up 10 degrees at a time while measuring these vitals. The goal? To induce my symptoms while measuring my vitals. Induced, they were. The head rushes, nausea, vertigo, disorientation, dizziness, blurred vision...all of it at once, combined with the anxiety of a potential syncope episode and the fact that I was strapped to a table, was the complete opposite of fun. In addition, my BP dropped from 117/65 to 89/55 while my pulse when from 84 bpm to 135 bpm...not a normal reaction to sitting up. I'm keeping the new med students and interns interested as we await more news. On the upside, I have been moved to a new diet at the hospital and now have twice the amount of options!

I've heard this is true for many chronic illnesses and I've seen it to be true for myself: there are good days, there are okay days, and there are bad days.  When people ask me how I'm doing I usually respond with "I'm alright," or "I'm okay today." But when I have the bad days, the dog days, the rough days, it's hard to lie. This is when I usually say something vague like "Oh you know, there are good days and bad days."  Unfortunately, I can't control when those days come. If I could plan them, I would choose days when I have no plans and it's raining, or days when I can just lay in bed. I wouldn't pick the days when I have family visiting, or I want to go out and see friends, or when I have plans to actually have a life.  Today was a dog day. Today was a 4 faints in 4 hours day. Today was a vertigo day. Today was a nauseous day. Today was a leg spasm day. Today was a brain fog day.  But today was also Father...

Okay, fair warning: This post is going to consist of me rambling about being a huge baby when it comes to needles and tests.  I went to a new cardiologist and neurologist yesterday. Two appointments for a total of 4 hours of answering the same questions for the 100th time.  In addition to the usual recommendations (drink more water, eat more salt, stand up slowly) both doctors ordered a slew of new tests. Luckily, I have nothing better to do than sit in an MRI machine for several hours.  Between the two doctors I have the following tests to do: MRI (brain) with and without contrast MRI focus on pituitary gland MRI with orbits MRI cervical MRI thoracic MRI lumbar Carotid ultrasound  More blood work Ophthalmology evaluation Tilt table test Electrophysiologist evaluation Stress test Another Holter monitor So I've had a ophthalmology evaluation before and I'm not too worried about that, except when they blow in your eye--that's just obnoxious. I'v...

Sometimes, mostly on Twitter, I have a self deprecating sense of humor. A while ago I tweeted something snarky and jaded about my struggles. In my attempt to be funny but blunt I tweeted this:  And to be fair, I'm mostly right. When we are hurting we like to listen to music that we can relate to. That's why there are about a zillion songs about heart break. There I was, extremely frustrated with the state of my life and feeling extremely isolated. I have great friends but none of them understood what I was going through. My family is extremely supportive (trust me, there are days when I need to be escorted to the bathroom because I can't stand on my own. My sisters take turns helping me to the bathroom. That is love right there) but when I'm having hard days there is only so much they can do.  At the end of the day, I can listen to Taylor Swift when I need to wallow in self pity about my failed relationships. I can listen to Justin Timberlake when I need...

So I'm not even sure if this is beneficial to anyone ever but I like graphs. So I made some graphs.  I started having my syncope episodes in mid March. I didn't really know what was happening or that it would turn into all this so I didn't start recording them effectively until April.  Syncope is temporary loss of consciousness and posture, also known as fainting or passing out. When I pass out I usually feel dizzy for a second, the room spins, and then my vision blacks out. Most of the time I am out for about 5-10 seconds, but there have been times when I have been out for minutes at a time. My syncope episodes occur when I'm changing positions-walking up stairs, standing from sitting, getting up in the morning-and can occur several times a day. They don't care if I have a trip to the beach planned, or if I'm in public, or if I am in class, or if I really just have to get out of bed once today to go to the bathroom. There are days when I barely feel dizzy a...

When you fill out patient forms in doctor’s offices, especially when visiting a specialist, there is often a reoccurring question, “When did you last feel normal?” I’ve always struggled with this question and it wasn’t until I heard the words “Chronic Lyme” that I understood why. My Lyme disease story starts in 2000. I was only 5 years old and I can only remember bits and pieces of my initial contraction, the rest of the story is filled in by my parents. Everything went right for an early diagnosis; my mom saw the tick on my eyebrow, I developed the bull’s-eye rash, I went to the doctor immediately. But there was one big hurdle. It was allergy season and my primary physician at the time was convinced that it was just a case of allergies and I was given a dose of Benadryl. Still, my body was persistent in telling me that I had Lyme. A few weeks after my first visit to the doctor, I developed Bell’s palsy in my face and had severe vision and hearing issues. My mom, the advocate she ...