Growing Deeper Roots: My Story of Invisible Illness

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...

I talk a lot about the frustration and difficulty that I face every day with my struggles with dysautonomia. I can't pretend that this is a battle that I wanted to fight or a gift I wanted to receive. But it is something in my life. It is something huge that was thrusted upon me and I can't change that. So sometimes, I have to own it. I have to proudly wheel through the grocery store. I have to make tumor jokes. And I have to take note of the changes that are happening in my life, because although they feel out of my control and some of them just really suck, there are a few changes in my life that aren't so bad. Saying that the tumor and the dysautonomia gave me something positive sounds odd, but when you're faced with a something like this, sometimes it helps to count the blessings. If I had never started faint, if I had never found the tumor, if I had never gotten sick, I would have spent my summer in Scotland or D.C. working life changing internships and taking c...

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...

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 ...

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...

Hello outside world! It's the end of Day 2 in Johns Hopkins and I just got my laptop so here's the update.  After my lovely weekend with my friends, I spent most of Sunday relaxing on the couch. My BP was not great (78/49) and I spent a lot of the afternoon working to raise it (If I ever liked Gatorade, I don't anymore). After dinner I felt very ill. I got nauseous, with very little energy. I could feel my BP dropping so I spent the evening in the wheelchair. my vision went blurry and I couldn't focus on anything. In the middle of a conversation with Ally, I fainted in my chair. My family worked to pick me up out of the chair and lay me flat to try to regain consciousness. I was out for about 3 minutes and then spent another 20 minutes going in and out. When I tried to get up to use the bathroom after resting, I fainted again. I couldn't stand or walk or hardly sit up.  So we went to the Emergency room at Johns Hopkins Bayview Medical Center on Monday morning....

After my first MRI (the one of my brain and focus and contrast on the pituitary gland), my neurologist called me in for a follow up appointment. Most of my tests weren't finished and lab results hadn't come back so we knew that this meant they saw something on the first MRI so I was prepared to receive a diagnosis or a new lead. A couple days ago, I was diagnosed with a pituitary macroadenoma. This is a tumor on the pituitary gland. More times than not, this type of tumor is benign. However, the size of my tumor, 8 x 9.6 x 12 mm, indicates that it is invasive and is affecting the function of my pituitary gland. It is also encroaching upon the base of the central optic chiasm and cavernous sinus. The enlargement of the pituitary gland and its proximity to the optic nerves is the cause of my vision spots and decreased peripheral vision. Because the pituitary gland regulates hormones, the tumor has affected my digestive system, as serotonin contributes to digestion. The pituit...