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!
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)
I have Hydrocephalus as well. I acquired it through e. coli meningitis
Hi there. Thank you for sharing about also having hydrocephalus. I just took a moment to read up on this rare complication from meningitis...you are very lucky to have survived it, apparently. How are you managing currently? Hugs, Gina Miller, Team Member , oh my, did it resolve? Does it spontaneously recur? Thank you for being here and for sharing. - Warmly, Donna (Team Member)
It's become overwhelming lately, with so many doctor appointments, labs, assorted scans, the financial aspects of all. With no end in sight and more disease manifistations being added.
Hi
,
i totally understand this sense of overwhelm. I literally find myself, also especially lately, deciding things like what tests and doctor appointments are the least likely to harm me if I put them off for a bit.
It can be very disheartening when we focus on there being no real relief in sight. I am finding that taking it one week at time, and even one day at a time, with adding in at least one thing each day that brings me joy, keeps the sense of sadness at bay.
I strangely feel lucky to be 67 now, with Medicare and Medigap, as the costs pre Medicare, even with 'good insurance,' were distressing. Thankful, too, for the new out of pocket drug copay cap coming next year for those with Medicare drug plans.Hugs to you as you continue to manage best you can.
Gina Miller,
Team Member
