As a Cushing's Disease survivor, what do I fear most? What do those of you who deal with it fear most? Feel free to share in the comments section.
I could get into a lot of fears, but I'm limiting these strictly to this disease. My top ten fears:
- A recurrence
- Never getting better
- Being a burden to my family/daughters
- Not being able to live on my own for the rest of my life or at least until I'm "old". (50 is NOT old!)
- Adrenal insufficiency
- Not being able to work.
- Having to work until I'm old.
- Losing my parents. They are such support in many ways, and they are dear to my heart.
- Losing my daughters. Ditto to the above.
- Always being fat. I want to be slim again.
Ouch, how depressing. But true. I don't dwell on this, but a friend's post on the cushings-help message boards tonight made me think how tough this disease is on us. Even when we get a diagnosis and help toward a cure, there is nothing promised. It's a damning disease. I hate it. Don't you, Christy? (Love you, girl!)
EDIT: Ok...I have to add two more things:
11. Losing Dr. Friedman.
12. Losing the cushings-help website and support boards (and all the friends that go with it).
I am afraid I will never "live" again, never have any real fun or joy again. It seems like each day is a clone of the last. I'm accomplishing nothing because I'm sleeping too much. My fatigue is still overwhelming and I don't see it improving, ever.
ReplyDeleteAnd Robin - you're a young thing compared to me!
Keep up the good work!
Mary
Mary, you accomplish so much. I don't think you realize just how much.
ReplyDeleteThank you!!
I had someone ask if I was afraid to die and my immediate response was, "NO, I'm afraid to be alive without living"!!!!
ReplyDeleteBut, we've got to push those fears aside and find courage to live each day......that's a hero in my book!