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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. When I got my second (of 3) rare disease diagnosis, I said "so I'm not a d*mn zebra anymore, I'm a unicorn!" (except I exist 😉 ).
    Reading you and others in this thread is almost like reading my own story!

    1. I was late diagnosed with a Primary Immune Defiency Disorder-CVID in my 59's. I was a few years later with Sjogern's, then onset Mal de Debarquement Syndrome. Doctor spotted me havi g a Raynaud's Diesease reaction in his cold exam room, and did a evaluation for EDS, I am hyper mobile. I onsetCAs, which set off POTS and a reactive Orthostatic Intolerance. Few months later Gastroparis hit me. Already had Gerd issues and other autoimmune conditions so was diagnosed as a Pentad Super Syndrome patient. More than a dozen otherchronic health by issues that are being managed. Always one thing fixed or managed and here comes the next one. Things that were unnoticed or mild are now more a problem as I age. I am juggling and adapting as fast as I can. I don't have a good immune system, even with weekly infusions due to the CVID. I haven't always built or retained immunities after getting infections from vitals, bacteria's or communicate diseases so I fusions help me at times when prior exposure it I fection, or even vacci Ations have. Currently developed allergic reactions about a decade ago to some vaccination I graduated. My infusion serum takes up to two years to be collected, screened, and produced to get to get into patient hands. So variants aren't current. This, have spent last three years stuck at home doctors orders. Waiting for alternatives to become available. I can go out if isolated away from people outside my immediate family at home. I do arrange for doctor appointments inmoersosn if required otherwise zoom the appointments. I mask if out by anyone and socially distance. Wait in my car and go in once they calle to come on, staff has to mask, and limited interaction. I lived a life that was prior to the last three years full and busy dispute all this health issues. Had o e child, adopted three more. Worked and volunteered often. I kept busy dispute my health. Married 44 years as well.
      I am now less mobile, wobbly , sway and tremors when standing up, risk of passing out. Extremely exercise intolerant due to Autonomotic Neurapathy issues and no longer bei g able to sweat normally, that's usually only above the chest now, heavily if I sweat at all. So oversensitive to both heat and cold at the same time between the Raynaud's and POTS, and Dysautonomia issues. Have passed out openi g the dishwasher after it finished from the steam heat even. So afapti g , and doing my best to keep managing it all. Can't wait u til summer is done and I can go outside e without risking oassi g out from the heat. I wear cooling vests and scurry to my precooled down car if I have to go out. Not fun wesri g a frozen ice vest, but beats passing out. I am usually wearing thermal socks , compression socks under thosr and trying to keep my hands warm. So freezi g and overheati g at same time in different parts of my body as it can't regulate heat or cold properly.
      I still find something to get up for each day. I keepysrlf as busy as I can manage and have energy for. Less busy these days. I find a stubborn determined Outlook to not cave to it all something that keeps me going. I don't take things for granted, and appreciate even small blessings life gives me. I am still managing to enjoy life, difficulties and limiting, but still worth it. I don't think without support of family and friends, a weird high tolerance of pain, I would have done so well otherwise.
      My body is meanwhile gleefully plotting it's next move at me, I am sure. Will deal with it best I can.

        Thank you for your shares here. You are the definition of ‘resilience,’ as you continue to manage each new challenge while making sure to find as much joy in your daily life as possible. Kudos to you! Gina Miller, team member

    2. I’m sorry to hear that you’re going through this. I have three autoimmune conditions (one is rare, another one is more common but only a small percentage of the people who have it are diagnosed). Hoping my body stops at three because it is more than enough to navigate. I hope your appeal goes well and that you’re able to get the help you need. Wishing you a peaceful day, Jessica H (, team member)

      1. I'm sorry you're going through this. I'm currently on disability. It is common for your first application to be denied. My attorney told me that the system is literally set up to make it so hard for people to get approved that they'll give up and go back to work. No joke. My advice would be to get a good attorney from the start. Good luck on that! Truly. I was born hydrocephalic and had to have a shunt placed. My skull was soft for the first two years of my life and I had to wear a protective helmet. Luckily, the hydrocephalus resolved itself and the shunt was removed. And my skull hardened eventually. Over the years though my health has always been bad. In 2005, I was diagnosed with Alpha-1 Anti-Trypsin Deficiency and am lung affected. In 2009 I started having issues with my kidneys which led to a diagnosis of iGa Nephropathy in 2022. And in 2016, I was diagnosed with Ehlers Danlos Syndrome hypermobility (hEDS). I also have Migraines, POTS, MCAS, Raynaud's Syndrome, and Dysautonomia as a result of the hEDS. And, just to round out the mix I have Hypothyroidism and Narcolepsy without Cataplexy. But hey, when I was born, they told my mom I wouldn't live. So, every day is one day I wasn't supposed to have. So even though every day is filled with pain... at least I'm alive.

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