Growing Deeper Roots: My Story of Invisible Illness

Well, we finally got into the Johns Hopkins' Pituitary Center. We made the appointment 6 weeks ago, that's how long the waiting period was. After 6 weeks, a blood test, a 3 hour appointment, and one of the world's best endocrinologists, we haven't made any progress. Dr. Salvatori diagnosed me with a prolactinoma, a pituitary adenoma that causes an imbalance in the prolactin levels. He did not see any issue with my cortisol levels or my adrenal gland. Normally, he world advise hormone treatment for this mass but the treatment has one concerning side effect...dizziness. Due to my already oppressing syncope, we won't go forward with treatment for Voldemort. Instead, I will have regular hormone level checks and MRIs. The good news? Tumors that behave this way, interacting with the pituitary, are very rarely malignant. The bad news? We have no more leads for treatment of my syncope. But hey, at least it's easier to catch yourself when you fall if you are...

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...

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...

              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...

I don't know if I ever really understood "living for the weekends" more than I do this summer. Last summer I worked at an all day summer camp. It was exhausting and sometimes frustrating but I really liked it. I felt like I was getting a lot of fun exercise and vitamin D. Then, I had money to spend during the weekend. I could drive to my boyfriend's house and visit him and I got to spend free time with my friends. I was starting to experience the fatigue, muscle pain and GI symptoms that have since wrecked havoc on my body, but I was still functional. I was still independent. During the school year, I had a busy stressful schedule, but I loved every minute of it. I love learning and I loved all my jobs at school. Weekends were fun, but so were weekdays. I had control of my life.  That's not what this summer is like. This summer, I spend every day researching self prescribed physical therapy, crafting an anti-inflammatory diet, and trying to work towards a more ...

WARNING: This is going to be ranty and a little obnoxious. I've always considered myself very lucky in many departments; I grew up with enough to eat, we weren't rich but we always made ends me, my parents are super cool (dorky as hell, but still really cool), my sisters are two of my best friends, I have had great opportunities in education and life in general, and because of my mom's job as a teacher, I have health insurance. For the majority of my life I have been blessed with fairly inclusive health insurance. I could go to the dentist when I needed to. I could go to the doctor when I was sick. I wasn't afraid of needing to get a prescription, because the insurance would cover it. I'm lucky. And I'm one of few with that much luck. But still, I face hurdle after hurdle after hurdle to treat my syncope. My team at JH decided that my best treatment plan would rely heavily on POTS specific PT. That's great. But here's the issue: 1. No one knows ...

I figured out how to Internet. I have a tumblr now. I don't really post much but it's fun to read other people's posts. I also figured how to make BuzzFeed posts, so I made a thing: http://www.buzzfeed.com/torabella216/what-its-like-to-live-with-dysautonomia-in-colleg-1p0st If you know me at all you probably know how much I love BuzzFeed. So I'm pretty pumped. I'm probably going to make more because it's really fun... I also made cookies today while listening to music. That seems like a really small accomplishment but let's keep in mind that standing successfully is new for me. And baking has always been one of my favorite stress reliefs. Today was a good day. 

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...

I'm a little late but here is my graph for June showing my pattern of syncopal episodes. As you can see, this is a clear increase from previous months. Hopefully, with treatment and physical therapy, July and August will be better. 

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 ...

If you have ever been in the hospital or a rehab center or suffered from chronic illness, you are probably familiar with frustration.  When you spend four months looking for answers from a dozen doctors in half a dozen different specialities but are still left empty handed, you get frustrated.  When you can't find the words to describe how you are feeling physically, mentally or emotionally and you feel completely misunderstood by your friends, family, and doctors, you get frustrated. When you wake up to your team of doctors saying that you haven't made enough progress to be discharged to rehab, you get frustrated.  You feel frustrated and angry and helpless with all of your doctors every time you get bad news.  You feel frustrated with PT and OT for not giving you more opportunities to make progress. You feel frustrated with PMR for not letting you prove to them that you are making progress.  But most of all, you feel frustrated with your weak, bro...

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!

My family, It's been a hard few months for us. We've been through a lot and we have more to come. This isn't easy but we are doing the best we can. You are doing the best you can.  Thank you for being by my side. Thank you for every time you've held my hand and every time you've told me that we will get through this, even when I didn't believe you. Thank you for lying to me when I ask you if I look okay when I'm self conscious about my bed-head. Thank you helping me up when I'm dizzy but I have to use the bathroom. Thank you for pretending you aren't watching me with held breath and a worried mind when I want to walk on my own. Thank you for lifting my wheelchair in and out of the car a million times. Thank you for the forehead kisses and for holding my hand during every needle or poke or prod. Thank you for driving me around to doctors and errands and thank you for letting me drive you crazy and still loving me the same. Thank you for being ...