ANITA A. TARLTON

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!

You are fortunate!

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.

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.

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!

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…[Read more]

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 husb…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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.

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.

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…[Read more]

Maria…. wow.  Just wow.

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.

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.

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.

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-…[Read more]