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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!Scars are deep. Visually or Non-Visual

  1. , 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)

    1. 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.

    2. , 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)

  2. 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.

    1. 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.

      Gina Miller,
      Team Member

  3. I have not had the chance to yet

    1. Amen!! Thanks for sharing 🩷

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