Since we are in week two or more of weather in the 80's 90's I thought I would take a moment to address MG and heat. People with autoimmune diseases know all too well what the worst triggers for their illness are. These include stress, illness, infection, and obviously heat. Thankfully I have air conditioning, however it is a catch 22 because I LOVE SUMMER. Unless I am in a pool I cannot tolerate the temperature if it is above 75, I literally melt.
This morning it took 2 hours for my legs to work well enough to get out of bed. It is now 5:20pm and I am still stumbling and using the walker for safety reasons. In addition to my legs giving out the MG has attacked my muscles used for speech so it has been a quiet day in my home. I sound like a drunk when I talk and if I talk too long I have swallowing difficulties.
I know this sounds absolutely mortifying and while it is no walk in the park I am thankful that I have kept the breathing and swallowing difficulty at bay enough to avoid the hospital. Tomorrow is treatment day for me and for those of you who follow my blog you are well aware that as the days draw nearer to treatment I go downhill. The heat has just gotten the best of me this go around. I think two weeks ago it was my legs and eyes. I don't know why my legs have been a constant as I rest them when I am weak, maybe they just haven't had enough time to recover?
Some good things have happened in the past week that I would like to post on as well. Saturday was the Annual Meeting for the Great Lakes Myasthenia Foundation and it was a wonderful event. I met some new people and got to meet a few friends in person for the first time. The speakers did a fantastic job. Lisa Gigliotti was there to tell her encouraging story of living with courage and battling RA and MG. Dr. Glisson, a neuro opthalmologist presented a great presention with video on Ocular MG.
Wednesday, the radio show I taped 2 weeks ago aired locally. You can download it for free on iTunes, just search "The Johnnie Tuitel Show" or you can listen to the podcast here... http://www.publicrealityradio.org/programs/the-johnnie-tuitel-show/episodes/show-5-jen-walsh
I hope my readers are having a strong blessed week!
Jen
I am so sad I missed that meeting!! BUT...my puppy needed me. He is doing SO much better, thank God. I swear, it was like my child was hurt!
ReplyDeleteThe heat is brutal for me too... even moreso the humidity. It just drains me. LIke I'm unplugged. Boo.
I am from Karachi Pakistan, and the summer here are in the 90's and 100.
ReplyDeleteI have MG since 5 years and was on a minimal dosage of Mestinon, Predisonole and Imuran, but this summer the MG has been bad.
I literally cant leave the house till about 2 hours before sunset.
Atleast from your blog I now know there are others like me affected by the heat.
Its so hard to explain to others!!!
Some think, I am faking it!!!
IAE - Thank you for reading my blog, I am sorry you are struggling with the heat. Feel free to share my post with your skeptical friends:)
ReplyDeleteHugs,
JEn