Growing Deeper Roots: My Story of Invisible Illness

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....

Three tests done! Today I had the ultrasound and the MRI. Ultrasound was easy and uneventful.  The MRI was kinda cool. Luckily it wasn't just a tube, it had openings on the side so I didn't get too claustrophobic. They also gave me headphones and let me listen to the radio. However, I'm pretty sure that being told I couldn't move made me develop itchiness all over my body. I had no desire to move until I was in there and couldn't.  I also needed an MRI with contrast so I needed to get an IV. Unfortunately, it's really hard to find veins in my arms and hands since I have extremely low blood pressure. So that part wasn't fun but eventually we managed.  The place we went, Family Imaging in Frederick, was very nice. The people were really friendly and they played music and gave me a blanket. Take away the giant magnets and it could've been a spa. AND they gave me a disc of picture of my brain. So now I'm blogging them, like the little wei...

Okay, fair warning: This post is going to consist of me rambling about being a huge baby when it comes to needles and tests.  I went to a new cardiologist and neurologist yesterday. Two appointments for a total of 4 hours of answering the same questions for the 100th time.  In addition to the usual recommendations (drink more water, eat more salt, stand up slowly) both doctors ordered a slew of new tests. Luckily, I have nothing better to do than sit in an MRI machine for several hours.  Between the two doctors I have the following tests to do: MRI (brain) with and without contrast MRI focus on pituitary gland MRI with orbits MRI cervical MRI thoracic MRI lumbar Carotid ultrasound  More blood work Ophthalmology evaluation Tilt table test Electrophysiologist evaluation Stress test Another Holter monitor So I've had a ophthalmology evaluation before and I'm not too worried about that, except when they blow in your eye--that's just obnoxious. I'v...