ANITA A. TARLTON
Forum Replies Created
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That is really interesting to learn! I’m about to order a new pair of glasses, and I believe I will try the blue light.  I see screens better without my glasses (which I’ve always found odd), so maybe this explains why!
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It absolutely does. A low pressure system (think: thunderstorms, hurricanes) makes me feel like my arms and legs are as heavy as telephone poles. I can barely open my eyes.
Heat is another trigger. I have a cooling vest that helps.
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The overwhelming fatigue that comes out of nowhere is the most difficult thing for me to come to grips with.  Today, for example….beautiful weather, I haven’t done anything physically exerting. Yet, I have moved from bed to recliner, all the energy of a sedated sloth. If I’d had plans, I couldn’t have done them. It’s really frustrating.
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I think we each learn our own limitations.  There are days when I can go go go, just like before.  But by mid afternoon, I feel “tired in my back”. That’s my signal of enough.
Funny, I was a teacher for 30 years. The last 15 years I worked, when I got home, I would have to lie down 20-30 minutes. I remember telling g my kids that my back was tired. Sounds crazy…. but it’s just a feeling like my back doesn’t want to hold me up any more!
I appreciate this thread to compare notes with other seniors.
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Yes!! Great guinea pig analogy!! We are all diagnosed with a variation of the same disease. Yet how we present it, how we respond to different treatments, and how we come to manage our lives may be completely different!
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I understand the worry. I was diagnosed 4 years ago at age 61. On oxygen 24/, unable to do the things i was accustomed to doing easily. Now at 65, I am better than I was. I’ve learned to adapt a lot. I’m still able to drive, though I didn’t drive for a year because I couldn’t trust my vision.
I am concerned about what I may saddle my husband and grown kids with. I’m praying for strength for us all.
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I’ve always had lots of projects going on. I like to sew, cross stitch, cane chair seats…. the list goes on! I am still doing most of those things, though for a good 18 months I couldn’t. I was shaky (didn’t work to “embrace the shake” too well. But mainly I was too weak to do much. Slowly, I began to pick back up my projects. I had to re-learn a few skills, and made a few modifications. One day, I went through a box of things I was going to do ” someday”. I decided I did have to do all of them. Decluttered a bunch of stuff. It was liberating!
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I’ve always had lots of projects going on. I like to sew, cross stitch, cane chair seats…. the list goes on! I am still doing most of those things, though for a good 18 months I couldn’t. I was shaky (didn’t work to “embrace the shake” too well. But mainly I was too weak to do much. Slowly, I began to pick back up my projects. I had to re-learn a few skills, and made a few modifications. One day, I went through a box of things I was going to do ” someday”. I decided I did have to do all of them. Decluttered a bunch of stuff. It was liberating!
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I’ve always had lots of projects going on. I like to sew, cross stitch, cane chair seats…. the list goes on! I am still doing most of those things, though for a good 18 months I couldn’t. I was shaky (didn’t work to “embrace the shake” too well. But mainly I was too weak to do much. Slowly, I began to pick back up my projects. I had to re-learn a few skills, and made a few modifications. One day, I went through a box of things I was going to do ” someday”. I decided I did have to do all of them. Decluttered a bunch of stuff. It was liberating!
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I remember my life before MG. I mourned the loss for a long time. Then, I decided slowing down some wasn’t such a bad thing.  Life’s easier when you accept yourself.
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1. I finally weaned off prednisone!
2. Began a more sensible diet plan and have lost 20 lbs so far.
3. Discovered water aerobics, and I try to work in 4 hours a week.
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I keep a journal. For about a year, I kept a list of “To Do” and “Ta Da!”
Things I needed/wanted to do were listed for each day under “To Do”.
As I completed them, I could put a check in the “Ta Da!” Column. If I tried and couldn’t complete something, I gave myself credit for the attempt, or extended time to complete it. If I just couldn’t do it, I’d write “Another day”
It was really a pretty good motivational tool for me. It made me attempt things, and allowed myself Grace to continue building strength and resilience.
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Maria…. wow. Just wow.
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My husband is an amazing caregiver. When I was first diagnosed, he studied everything he could find about MG. I was unable to ask questions, but he certainly did!! I need some fresh ideas for Caregiver Month.
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I keep my go bag packed and in the closet. I have pajamas, cell charger, notebook, pens, toiletries, etc.
I’m getting ideas here to add to my bag.
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I’ve been on Cellcept since 2018. I take 1500mg twice a day. At first I was on 60mg prednisone along with it but I was able to wean off of it this year.
Cellcept took about 9 months to really kick in for me. I had some hair loss but nothing drastic.
For me, it’s been a game changer.  I am pretty much able to do everything I did pre-MG. I’m grateful to be able to take it.
I was wearing a mask in public before Covid, though, because of the suppressed immune system.  I haven’t had so much as a sniffle though.
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You are fortunate!
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As a child, I also was exposed to chlordane.  I was diagnosed with MG at age 65. However, I can look back and see many red flags that could be MG.
I think there might be a connection, at least to autoimmune issues in general.