This is not a fun game of tag

Okay. I have bones to pick.

I love my doctors. I have many really wonderful doctors (because I've been through enough to find the good ones). I have two cardiologists working as a team from separate offices since I'm at school during the year and here over the summer. I have a whole neurology office working diligently for me. My primary physicians at school and at home are great. And soon I will have my team at Johns Hopkins coming up with my treatment plan. All of them are really great and helpful.

But here's the thing. Everything is slowed down by this horrible game of phone tag that I play with everyone!

"She's out of the office today, can I take a message?"

"Hi, this is Dr. ****, I'm calling for Victoria Venable. Give me a call back at 301 *** ****."

"We need to have you come in for {insert test or lab work}, but the scheduler is out for lunch, can we call you back?"

Guys, I'm in a wheelchair. I won't win any games of tag.

And don't even get me started on the lists of options for operators.

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My first trip to Johns Hopkins

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....

A new chapter and a new partner

It's been almost 2 years since I have posted to this blog. Believe me, I have tried. I have about 25 saved draft posts that never got published because they ended up sounding like the same repetitive story. Another pattern of rumination. Another soliloquy of self pity. That's because the last three years of my life have been fairly cyclical and unchanged. I have a few good weeks where my symptoms plateau and I faint only once or twice a month. Then, a storm hits. I get a cold and I crash into a regressive phase where I faint daily, injury myself, get frustrated, and then slowly move back up to the plateau. I have been tired and frustrated as I put grad school on pause, as I continue living with my parents, as I take three steps forward 2 steps back. So I stopped blogging and started to do what I could to move forward, pretending I am not sick, and working on ways to get healthier like a normal 24 year old. But still on pause. But over the last few weeks, ...

Fall update

Okay, so I'm starting to run out of ways to say "I haven't written in a while." I have also run out of excuses. The last time I wrote, I had the excuse that I didn't have any internet all summer so I couldn't post. Well...I moved out of that house August 15th...so that doesn't work. No excuses. I'll just catch you up. I spent the last month of my job at WAC in a cute 1 bedroom apartment in Chestertown. I got to live alone, cook for myself, shamelessly sing in the shower, and host girls-only wine nights. It was a lot of fun but by late September, I was ready to move on from WAC. So I did. Yesterday, I started a new job as the Legislative Director of a Delegate for the Maryland General Assmebly. Onward and upward. But first, I'll make it up to you for neglecting you for so long. Feast your eyes on a photo-list of all the wonderful happenings since mid-July. 1. I helped one of the best people I know move out of his house in Chestertown and ...

Growing Deeper Roots: My Story of Invisible Illness

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