Dealing w more than one
Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess I'm just as rare☺️. I was denied Social Security for Ihh and lost the.appeal. I'm reapplying years later ( Now) for this new rare skin condition I'm dealing with. I pray I finally get the help I deserve!
One day at a time.
, that's the only thing we can do! Sometimes the days feel like being on a carousel going 50 mph, with no safety harness. So staying n board is a great achievement every day! - Warmly, Donna (Team Member)
Listening to reading online my Dr seems useless
And makes it harderSo I go by what works doing the best I can
Many times feeling hopelessThankyou Blessings 🙌
, I'm sorry to hear that your doctor is not trying to connect with you. Have you sought a second opinion?
Listening to your body is essential!. - Warmly, Donna (Team Member)
I have 7 autoimmune diseases my first one was autoimmune hepatitis and that took 4 years to get it to stop attacking my liver but had CIDP at the same time I didn't know I had it just 3 reasons in my brain 25 years latter I have disfunctioning bowels and bladder I worry about the one that's causing the worst problems I am in a wheelchair outside my home so I don't fall I can not stand longe . I got my autoimmune diseases from my mother and have exposure to solvents as a young child and my best advice is to fill your tool box with meds you might need at night's and weekends so you needent wait to see you doc that what helps when I am hurting
, that's a heavy load! Thank you for sharing your tips and experience. How are you doing, especially at this busy and difficult time of the year? -Warmly, Donna (Team Member)
I do a podcast on rare diseases called Rare Connection. If there is one thing it has taught me is you are never alone. It is very easy for those of us in the rare disease world to feel alone. Find your community. Most of us have more than one condition. I have 2 of them Homocystinuria and Dupytren's Contracture. I have a facebook group by the same name as my podcast if anyone wants to join. I am also looking for guests if you have a cell phone you can record on and don't mind being on camera.
, thank you for sharing! It is easy to feel alone and not understood, it is so important to remember that there are more rare warriors than we might have imagined. We're glad you're here! - Warmly, Donna (Team Member)
