Changes can come from a lot of places, like new or adjusted treatments, stress, routines, or even the seasons. If something you’re trying has played a role, feel free to share what that’s been like for you. #TreatmentJourney
No, David. We all have to manage as best as we can. I’m on lorazepam for anxiety, have a therapist and psychiatrist. There is no shame ☺️
I spent most of my life worrying about everything. But since getting the gMG diagnosis, I have resigned myself to having limitations and have accepted them. I no longer worry about most everything. What is the point, as it seems to make things like MG worse. I follow the GP and neurologists advice and study some of the issues on line so I can be part of the medical decision making. I do feel bad for those with severe cases of MG and I worry about the younger people who have MG. They have to balance many more issues than I do just to get through years of working, child raising, etc. Perhaps all we can do is our best and pray that a higher authority has it all planned out for us. Instead of asking for help, I have spent the last many years asking who can I help, and that makes it all much easier for me.
Cheers, Bill Z
Hi CindyJackson👋🏾
I use audible and if I could get to the library I'd do that. Thanks.
My eyes are okay today😎🥰
Hi Joanna. It must be very frustrating not to be able to read. You didn't mention it, so I wanted to ask if you have books on tape? It's a wonderful service through the Library of Congress. I don't know where you live, but your local library probably has a service you can access to listen to books. I am staying hopeful for you. Cindi Jackson
Before MG I was an avid reader. I read everything. Loved the huge history books. the more info the better.
Then suddenly I couldn't read one word without it turning into massive eye strain. Later it became temporary blindness. My eye couldn't adjust to any light at all. That lasted about 2 years.
Today 4 months after my thymectomy and I can scroll my phone in daylight. Open my curtains and enjoy the sunshine. My poor pants are fine.
I have to remind myself that I'm being monitored for the next 5 months. I get eye strain after too much reading and that's daily. It might be from reasons or watching t.v or scrolling on my phone. I wake up the next day with a little double vision but if I allow myself some grace just take it slow it disappears pretty quickly after I take my meds. Some mornings I'll have a headache. So I'll dawn my shades for about a hour or so. I habitually wear them sometimes. They're very comforting.
I remind myself daily that surgery isn't magic.
Stay hopeful 😎