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...

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...

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...