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...

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...

It is the end of another long week. I've always been one to love school and this year, though more difficult than ever before, is no different. In fact, after just the first two weeks of classes, this year has been quite rewarding.  But, the week didn't start out that way. Sunday night, only five days ago, I was frustrated. I was very very frustrated. I was finally admitting to myself that I was thinking of leaving. I even said the words out loud. As much as I wanted coming back to school to work out, I wasn't sure that it was. After a frustrating day of callbacks (callbacks that I thought went poorly, at the time) and unfinished homework, I had a mini meltdown.  Luckily, as you know, I have friends sent from heaven. So I spent a good hour and a half crying and spilling out all my frustration on my friend Alex. Alex knows me extremely well. We've been friends since freshman year and we spent a good bit of our friendship as a couple. I thought it would be hard to co...

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...

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...

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 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 ...

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...

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...