Growing Deeper Roots: My Story of Invisible Illness

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...

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...