Anyone out there with LGMD1C?

I am a mother of three and 42 yrs old. LGMD1C affects my everyday life in a major way. I am on disability because I was unable to work. I am a published artist (I am in the top 100 Colored Pencil artists in the world) and I credit that to working hard to find something that could be therapy. I needed an outlet and I found that in my art. I am believer and that has helped the most. I couldn’t draw a stick figure and now I do portraits and florals.

I haven’t been able to see a specialist yet. I live in Alabama and getting a Neuro/Musc specialist has been like pulling teeth. I have an appt in July that I have been waiting for, for 18 months!!! I have learned a lot from my sons doctors at Childrens Hospital. I have a pain doctor who is a Neuro but they know nothing about this and tell me to see a specialist. It’s pretty much them saying they can’t help me.
I am so glad to say that my son has very mild symptoms so far with rippling muscles, light pain and weakness in one hip and elbow. My symptoms have progressed to where I have to use a wheelchair if I want to go shopping or to go to museums and such. I can walk around in the house, church and to make a super quick trip in the store but that’s it. I spend most of the day in my inclined bed.
The progression has been very hard on me and my husband. I can’t keep my house well enough and I can’t go often out with my husband. I have struggled with Depression since getting sick in 2009.
I took dance lessons my whole childhood and was a majorette. I was in amazing shape with small but muscular build. I am still a small person but my muscles are just gone and don’t want to function. I was a very active person and now I feel trapped in my stupid body!
I haven’t really had any treatment as I only found out about 4 months ago that I have LGMD1C. I have been taking pain medicine for 10 years because the pain is so bad. I hate taking it but I have to be able to have some quality of life and be there for my children.

Anyway I feel I have vented and I am sorry about that. It would be amazing to know someone else with this disease. I do have my sweet son who I can talk with but I don’t talk deeply about it because I don’t want him to dwell on this disease. I want him to find a career that he will be able to do with these symptoms I’m the future.
I am pretty sure that my daughter has this as well but she doesn’t want to get tested. She is like I was and very active and she is in college. She is denying it and I don’t really blame her.

Thanks so much for the job you do. I know so many have benefitted from your efforts.
Thanks Mike