I have started a meetup group that I can share or also organize from here for anyone interested in SE Michigan. Post here if you interested. Though everyone here is likely already very educated and informed. But an understanding ear still helps, I think.
I am just wondering where in SE MI you are? I just recently quit working due to my migraines and it was my neurologist who actually brought up along with my friend for me to tell my story. I really didn’t think it was different from most but he went as far as stating when they get their clinic up in running to full speed he would probably ask for me to speak. I guess it’s because my fight to come off of opioids and how to handle these horrible things along with having a heart attack from DHE (aka triptan/sumatriptans mother, as I was told) to then having my liver try to shut down using Depakote. I am still standing. I fought back. But after years of refusing to go on disability I have finally given in with the total support of my doctors as he even said “it’s time”. Yet I ask of you….then what do I do with my life? I was home for 3 months with a feeding tube and I won that fight. I hated it I was bored so what do I do? I feel this is going to take me into depression like never before…hopelessness. Maybe no one will answer this. But at least I wrote it. So I can say I tried.
Thank you for sharing your difficult journey with us. I’m so sorry things have been so rough. I wanted to let you know you’re not alone, we’re here with you!!
Being on SSDI can be a blessing and a curse, in my opinion. I’ve been on it since 2010 after trying to work a part time job I was overqualified for, to prove to myself it was time to apply for SSDI, it was.
Finding purpose is a challenge, but I’ve found mine being a migraine disease and headache disorder patient advocate. Sharing our journey is a great way to connect with other people who are in similar situations.
You could also seek out volunteer opportunities in your community. When you’re having a good day, you can participate.
Being on SSDI is an adjustment for sure – it was for me!!