Task Specific Focal Hand Dystonia

I'm new here and am looking for people to connect with whom have the same diagnosis as myself. My case is severe and affects my hands and my forearms. There are a lot of things I can't do with my hands because of this, but the most affected is my work (I am a jewelry designer/artist) and writing. I have to type most everything and working with beading, metalworking and even painting is difficult. Guess I choose the wrong profession! My neuro-muscular doctor didn't give me much hope in coping. My alternatives were the drugs (no thank you...too many people become addicted) and DBS. He stated that Botox injections are not really the answer for me as it is so severe in my hands and forearms, isolating every muscle affected would take between 2-3 hours per session and must be repeated every couple of months. He is fearful in doing that high of volume of injections of Botox, and besides, my insurance won't pay for it. So, right now, I try to cope the best I can. I do not write if at all possible and I can only work for an hour at a time, if that. Then I take a break and go back to it later. It is very exhausting.

I am looking for friends with this same problem. How do you cope with it? There has to be a way to live with this as it doesn't look like a cure is in sight any time in the future.

I apologize if I sound like I am whining about my problem when there is people here who have far worse dystonia than myself. This has been a real blow for me because it affects my livelihood and it is really hard not getting down about it. I love working for myself and never want to have to work for someone else ever again!

Thanks in advance for listening.

Lisa