- Chronic Inflammatory Demyelinating Polyneuropathy
- Interviews
Amy's interview
How did all start?
Weakness, muscle loss, and neuropathy
Do you already have a diagnosis? How long did it take you to get it?
Yes. Was diagnosed within 6 months
For what medical specialties have you been treated? What has been the most useful specialty for your?
IVIG, steroids, Horizant, and Lyrica. Already on Remicade for other reasons.
What has been the most useful thing for you so far?
I'm not improving but IVIG is helping me not get worse as fast.
What have been your biggest difficulties?
Daily activities, showering, cooking, just living.
How has your social and family environment reacted? Have your social or family relationships changed?
I dont have a social life outside the infusion center. My immediate family is very supportive but outside of that I don't think others understand until they spend time with me.
What things have you stopped doing?
Everything
What do you think about the future?
I try to look forward to events in the future to make daily life worth it.
So far, which years have been the best years in your life? What have you done during them?
Well I was diagnosed with RA at 24 (1997). After that I was disabled within 3 years. Biologics gave me some of my life back and able to push thru the pain. 2007 came crohns disease. Life got more challenging 2012 and on. Moved to Texas 2014 and was diagnosed with Lupus, vasculitis, cyst on my spine, and many more but to top it off CIDP. So I guess anytime before 2007 because I could be somewhat normal. I could go places without a scooter or walker.
What would you like to do if you didn’t have your condition?
Everything!!!
If you had to describe your life in a sentence, what would it be?
Doctor visits and infusions. My family, my dogs that are my support animals, night and day beach runs to recharge my soul then playing Pokemon. My sports teams, Go Pack!, Texans, Astros, Cubs, Roll tide! Yes a little of everything. My life was sports before my life changed.
Finally, what advice would you give to a person in a similar situation?
Find things to feed your soul. Things are going to be hard so find someone to talk to. Find good doctors. Keep searching until you are in good hands!! Dont get down on yourself. That is the hardest thing...if you can't shower wear a hat or do a sponge bath. Take each day as it comes. Some will be better than others.
