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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. Amen!! Thanks for sharing 🩷

    1. I see my Rhuematologist regularly, just take one day at a time. Yesterday is gone, tomorrow is not promised, we have no idea what tomorrow may hold,today is here and now. We can make tentative hopeful plans for tomorrow, today has to be lived today

      1. , this year has taught my family how true all that you have said is. Do you ever find yourself struggling to maintain this mindset? - Warmly, Donna (team member)

    2. 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.

        1. 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. Oof I can definitely relate to the struggles that come along with having autonomic disregulation symptoms such as Raynauds and POTS! I also struggle with both, they onset when my narcolepsy did after a severe viral illness. I can't even take showers anymore, I have to take lukewarm baths and then sit for a long time after the effort of it all. (I have a chair that I keep in my bathroom for just such occasions.) POTS also affects my ability to walk very far, or exert myself. Salt tablets help, and avoiding extreme temperatures, but these definitely aren't a "fix"! In fact I used to live in Arizona but had to move due to the extreme heat making my POTS symptoms so terrible. The ice vests you mentioned wearing in the heat sound ingenious!!! What other kind of techniques help you while living with your conditions? Anything similar or difference to what I use for managing POTS? Also I just wanted to note that you sound like a chronic illness warrior! Managing a household and volunteer positions while living with all of your conditions is simply amazing. Thanks so much for sharing with our community. Warmly, Tatiana ( Team Member)

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