The MOG Blog

This blog is about me, a girl struggling with a rare nuerological disease. I made this blog to have an outlet for my emotions and feelings and what I deal with on a day to day.

[themogblog]

CVS

What is CVS? Cyclic Vomiting Syndrome. Something I've been dealing with for like 8 years. This has involved waking up almost every morning with nausea and trying not to vomit, sweats, shakes, and conscious comas. I just discovered on my FB CVS Support group this is NORMAL for people with CVS. I was all yal normal people to imagine waking up feeling sick to your stomach EVERY MORNING. And the only way you can have an appetite, is to smoke a little devil's lettuce.

Sorry, this just blew my mind. The fact that I'm NOT alone. And that my health can go from 0 to 200 in a matter of minutes.

[themogblog]

Who Are You? What Is MOG? (cont)

Well, It's been a busy couple weeks. Starting March 1st I have to be out of my childhood home, and am trying to hurry up and close on another mobile home so we can have a place to live. Anyways, I have dealt with swelling on my optic nerves (the part of your brain that connects to your eyes) to the point where both of mine are mostly dead. As scary as it sounds, I'm so used to things going wrong, I just keep going. Which has gotten me into trouble. Like I have NO peripheral vision, so I run into things with my shoulders a lot. I have run into so many things and people are always just like "OMG ARE YOU OKAY?" Yeah bro. Just pretend it didn't happen, I'm fine. Please ignore the fact I have the sight of a mole. Which is why you will never see me behind the wheel again. So MOG symptoms? What does this cause? It causes blindness, headaches, brain fog, and other nerve problems. Along with my other diseases, it just makes every day a symptom party. Feel free to send in asks about MOG, and I'll answer to the best of my abilities.

[themogblog]

Who are you? What is MOG?

Hello! I'm so glad you asked, my name is Indy, I'm 27 years old and I have a rare neurological disease. MOG/MOGAD (Myelin Oligodendrocyte Glycoprotein Antibody Disease). It's kind of a mouthful, as just about every medical condition is. If you want to get down to the sciency portion, you should check out TheMogProject.com because I failed Chemistry in college. So I will be using a lot of metaphors, because that's how I relate things. We should probably start from the beginning? Yeah the beginning.

So let's skip back 21 years ago, as little Indy was coming into childhood and school. Well, my best friend at the time (for privacy sake, names will be changed) Terry, had glasses. Little me wanting to fit in, also wanted glasses, especially because I couldn't see as well as others. So After a visit to an eye doctor, I had bifocals. Yes, tiny child with bifocals.

And before you read any further I hit the rare disease lottery. I was also diagnosed with WPW (Wolff Parkinson-White Syndrome), which is a condition in which your heart has extra electrical pathways. I got lucky, I had two extra pathways! So when I would work out or run around, or just be a kid my heart would start racing, and it wouldn't slow down. My record was 325 bpm, and I stayed conscious. I'm apperently a medical marvel.

And just writing all this is making me tired, so I'm gonna take a break and go play some Sims 4. So here's Indy signing off, with the rest of the stories to come.