Scarversary

Yesterday was my 6 year anniversary of my thymectomy.  It's not something I'm sad about... It's something I cherish.  It has a lot of symbolism.  Mostly because what happened, and what I still go through is not about the scar.  The scar is the only visible evidence that something was/is wrong.


It's a battle wound. I won that battle... I still fight the war every single day.


Speaking of... After 6 years I decided to do some neurologist shopping.  I was getting tired of the same old thing.  I go in. Wait. See the doctor for 5 minutes. Tell her my woes.... complain that it's the same thing. Highs and Lows. Tell her what dose of meds i give myself.  Have her say... well... yes, you have a chronic disease, this is how it works. Okay... see you in 6 months. And I pay my $30 as I walk out the door.


I am going to try the osteopathic neurology route.  This week I did a "try out".  I think that just having a new perspective on the same old thing is a really good thing.  My expectations are not too high, I mean. Neuro One was right... It is a chronic disease.  It IS possible that where I'm at is as good as it gets. I went in... I sat and talked to this new doctor for an hour.  It was great.  I really like her.  She's married with kids.  Somehow she told me she goes to Mariner's and was really happy to hear that I was a Christian as well.  She has epilepsy, which actually makes me respect her even more.  She herself has a neuro disease.  She understands how sucky this is.  She even used the words "this sucks" several times.  She was just normal.  It was refreshing.


She gave me a few options... all kind of centering around trying to eliminate or shrink the stress that I feel.  Since Myasthenia Gravis really plays on stress, emotion, exhaustion we want to really try to minimize those.  And life is pretty stressful in general.  So some of it is impossible. 


So I'm starting with some baby steps.  Some honesty, and a little med. We'll give it a shot.  

Three Year Anniversary

It's been 3 years today since I've had the thymectomy. And just a month more than that since I was diagnosed with Myasthenia Gravis. I can't believe it's been that long. Still feels like just yesterday.
3 years ago I couldn't smile, squint my eyes, see straight, feel my lips, swallow, or even talk at times. I was exhausted all the time. I would eat cereal and food would fall out of my mouth. That's when I started to think something was wrong. It wasn't until the inability to swallow, smile, or talk did I know for sure.
I thought for sure I was going to die in a hotel room by myself in Milwaukee, Wisconsin. Definitely not a place I wanted to spend my last days.
And now, 3 years later, I'm still here. Although MG is a chronic auto-immune neuromuscular disease, it's quite treatable. It is still a struggle every single day. I still have awful awful days. There are still days that I can't feel my lips, see straight, swallow, or make my arms function properly. I still have to take pills every 4 hours. But when I remember back to what I was like, when I look at pictures of the non-facial expression, I can't help but be amazed at how much better I am. For some reason I think that's why I burn the candle at both ends. I try and fit as much into life that I can, right now while I have it. What else are we here for?