Shifting Gears

So many things to talk about...

First off, WOW, thank you to all my readers! I have now passed 10,000 views! That is AMAZING! Please keep reading and passing it on to promote awareness of both MG and POTS. The headings above speak specifically on MG and the "Part 1" "Part 2" and "Part 3" listed under August speak on POTS.

Sunday was the MG Walk Fundraiser. God blessed us with a beautiful day in weather and in strength. That morning and while driving there, I wasn't feeling very good. Sensory overload was hitting me, stomach didn't feel that great, breathing was bad and muscle weakness about average. But our team's name was "Mission Remission" and it seemed as the walk carried on I was walking (or wheel chair riding) closer towards that goal of remission. I walked a small portion of it, but what shocked me more so was my amount of energy- how talkative/energetic I was. I met up with my MG friend and her family which made up our team, and ran into so many other MGers and/or their families that I know. I realized after the fact that I was talking there like I used to before getting sick! Healthy people don't realize how much effort/energy talking is especially to someone whose muscles including diaphram and voice are affected. It was SO great to see all my MG friends and be surrounded by such support and courage.

Our team came in 2nd place for fundraising! We had about 10 people on our team and the first place team had 30! So 2nd is AWESOME! I, as an individual, came in 4th place which again is AWESOME because there were more than a hundred people and this was my first time fundraising. And lastly, I came in 2nd individually for bringing in the most donations within the last week. But I am not taking any of the credit. I am saying this because I am thanking all of YOU for making it happen! THANK YOU!!! This cause obviously means so very much to me and finding a cure, or even improved treatment, and spreading awareness so us MGers are no longer written off as "just anxiety" would be a dream come true. I so very much appreciate each and every donation. Thank you!

That was only 2 days ago, but since then I feel different. I feel better. No not pre-MG better, but better. Today I had an appointment and my mom and I planned to stop at 1 or 2 stores after quickly. Somehow that led to 3 stores plus Jamba Juice plus the video rental store plus the grocery store plus the farm stand. I was in the wheel chair for most of it but still that is a BIG day for me. And yet, here I am typing away, happy as a puppy being adopted (yes that's a hint we need to get a puppy mom and dad). When we were almost home I mentioned how it seems like I'm lasting longer these past couple days. My mom said she didn't want to say anything until I noticed, but she noticed that too. Awesome! I was hoping that Mission Remission was coming into full effect but then reminded that it's not that time yet when my legs stopped working. It's ok though. It's ok.

Now, this isn't happening on its own. At my last neurologist visit, he asked me to up my MG meds. I was concerned because I get side effects when I do that but I told him I would try again. The two doctor visits I had this past week weren't so great and really made me feel defeated, but I'm going to hold off on talking about that because I'm feeling too upbeat for something so negative right now. Anyways, I held off on really upping the meds until the day of the walk because it was my ultimate goal to make it to that walk LOL (stupid little things can land me in the hospital for weeks). Well I made it and then I upped the meds, and ever since then I'm feeling better and lasting longer. Thank you Jesus!

Quickly without going into detail, the reason my doctor wanted to up the meds not only because my symptoms aren't under control, but because he really thought everything was mainly POTS not MG. He said if we up the meds and I improve, there's good reason to believe the neuro muscular symptoms are in fact MG (the rest is still POTS). So now I have to report back. I had a gut feeling all along my MG wasn't as good as he thought it was, but I wanted to believe he was right. Oh well. So NOW there's a chance immune suppressants will come into play. My breathing tests still showed MG test at 20/30%- REALLY bad, and my pulmonologist said nothing but MG can really explain that one. So there you go. MG and POTS both affecting me, but I'm going to take them both down, you just wait and see.

So with all that said, today starts Dysautonomia Awareness Month. POTS is a form of dysautonomia. So I'm going to try to speak more about POTS/Dysautonomia this month, and less about MG. We'll see how that goes. For now I found this video that I think does a good job of showing a bit how we POTSies (that's what we're called) live our lives. I like it. It's short and somewhat informative, so turn on your volume, take a few minutes to watch it and learn. We need awareness. Next time you see someone park in a handicap spot and then walk into a store and you are thinking to yourself they don't need that spot, keep in mind that how we look on the outside does not match what our bodies are doing to us on the inside. http://www.youtube.com/watch?v=9iRwgvh9L0s

Happy October, Happy Fall, Happy Dysautonomia Awareness Month
Happy Heather :)