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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Patricia's Story'


Dandelion field

My name is Patricia Goldberg I am the face of Autoimmune Disease more correctly Diseases. I am 63 years young and I am divorced after 30 years of marriage, I never thought I would have to face illness alone but here in am. I have 3 grown sons and 3 wonderful daughter in laws who have given me the privilege of being a Grandmother which I swear makes me Wonder Woman when I am with them. A 13 year old grandson, a 12 year old granddaughter and a 1 year old grandson. Smiling all the time and strength that amazes me every time I’m with them.

Patricia

I have Sjogrens, Raynauds, Scleroderma, Interstitial lung disease, Vasculitis, Neuropathy, nerve damage and organ involvement with complications from all of them. Sounds terrible right? But Sjogrens was my first AI disease and I slowly added more which happens to many of us so I have an indomitable spirit that will always try to overcome or learn to live with my circumstances.

My diagnosis was not easy but it never is with Autoimmune diseases. My little sister started with UC and I had Liver failure(or so I thought) and things just kept getting worse for us, she found Sjogrens on the internet and we went from there. Notice neither of us started with dry eye, dry mouth or brain fog first so remember we are all so different but the same. Isn’t that a quote from Sesame Street. Ha ha! I was even sent for a transplant and after all the tests they couldn’t find a problem even after I thought I was going to die.

The pain can go from nagging to excruciating in a heartbeat freezing, stabbing pain, aching, brain fog, organ pain, numbness etc. etc.. As a ENT Specialist told me this set of diseases is Willy Nilly you’ll never know which flare you’ll get, how many you’ll get or how long they will last. She also added “Live your life and don’t waste too much time feeling sorry for yourself” I take Myfortic which is a wonder drug for me also 7 diuretics a day, Potassium, amlodipine, gabapentin, vitamin D, glucosamine for arthritis in all joints, Zyrtec, baclofen and very sparingly pain pills. My passions are golf and driving my convertible Corvette so to do this I workout 3 days a week, do Accupuncture, Reiki, therapeutic yoga and stay positive! When things get really hard I will get in my red Corvette put the top down and crank my music loud, the wind in my hair and the sun on my face with the beat of the music in my soul make me happy. As they say Sjogrens is the hidden disease as well as others and by my picture it’s true but that’s a plus until you hit the ER and they think you’re a hypochondriac.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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