Biggest challenges you face in your current journey?
Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a difference?
One minute at a time. With a big smile on my face. 🤗
My biggest challenge has changed over the 4 years since my diagnosis of Myasthenia Gravis. I already had Rheumatoid Arthritis and right before Covid, my doctor literally disappeared. Closed his doors and no contact, notice, nothing. So as I was starting to experience a flare, I contracted Covid, then I had a MG crisis. But didn't know that's what it was. Getting a diagnosis was the first challenge, getting over Covid and the crisis was the next, and its been one challenge after another. But one that has been constant is battling the depression that I already had to battle, except now, there is another 10lbs added to it. My biggest help has been a friend who has several health issues and has gone through the battle of getting diagnosed, having to leave work, fighting depression, disability challenge, getting the right meds, etc. She has guided me, encouraged me, prayed with and for me, cried with and for me and pulled me out of my pity parties more than once. I am still struggling and thankful I have her and God. Because, I still haven't figured out the best route to handling the challenges. My prayers for anyone with a rare disease, God be with you.
Finding a doctor. I have Arthogryposis Multiplex Congenital Distal Feldman -Hall with Dupuytrens Contractures. I'm 76 years old. Treatment is done as the child grows. Once the child becomes an older teen or adult, treatment ends as it is felt the bones can no longer be manipulated to aid the child. So when we start breaking down with excessive wear and tear or arthritis we have no doctors with the knowledge on how to treat us. People age 50 and above are the first generation that was no automatically institutionalized. And our operations are no longer performed. Very few of us have hospital or doctor records.
It depends on how we define "difficult". Most of the time I don't. Back to bed, fan on, curled in a ball, and blanket over my head. I pray for release from the demons and I stay there until they pass.
