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 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
, have you consulted an attorney to help with your appeal? Just a little wisdom from our migraine community - document, document, document - and get your doctor to document as well! - Warmly, Donna (Team member) Thanks for your support Sis. Donna, I'm currently at 90% in Determination w Disability Case. I do not have a Lawyer yet, If somehow I'm denied Again, after this, I will Most Definitely Seek A Law Firm!! Asap. , we're always here to share support. I'm sending love and light out to the Universe for a favorable outcome on your behalf. Let us know how it goes! - Warmly, Donna (Team Member)
I started with sjogrens (diagnosed in 2015 officially),. Since then I was diagnosed with Raynaud's, mctd, lcv, ra, autoimmune gastritis, and the rare cryoglobulinemia. Every single one effects different parts of the body. When things flare up it's painful then it effects my mental health. I hate not being able to do the things I want to do that I did before my major health flip when I was admitted to the hospital for heart failure. During that hospital stay is when I was diagnosed with cryo. I have not been the same since. There is still something going on in my system but all my labs keep coming back normal. So there's not much they can do. It's frustrating.
Hi
,
Thanks for sharing. I hear your frustration. Having so many medical conditions will certainly strain one's sense of safety and peace. I hope that you have some tools onboard to use when your flares happen? Not sure why, but when I just went to search our site for "Mental Health" articles, I get a list but am not able to click onto any to open them, or to grab a URL to share with you here. I will need to contact tech... Perhaps it will work for you on your end, or you can search the net for mental health tips for chronic illness?Another reaction from me: your share reminded me of the Netflix Series "Diagnosis," in which a doctor outsources help via articles she placed in a major newspaper and online to try to help patients with many varied symptoms find what might be driving them, or to find a treatable diagnosis, via replies from other patients or providers.. I recall wishing that we all could get such assistance. Forums such as these serve in similar ways, but minus a medical provider overseeing or sorting through replies. Given that, perhaps someone else on this forum might offer some additional insight for your providers to consider.
Hugs.
Gina Miller,
Team Member
