The story of Allison
I lost 50 pounds in 3 months back in 2013, leaving me at a tiny 102 pounds and standing at 5’8 it made me look even smaller. Over the matter of a couple years and numerous doctors in the Bay Area and at the Mayo Clinic Scottsdale to get my diagnosis of Addison’s disease, gastroparesis, POTS, mastocytosis and celiac disease. I was vomiting daily, passing out, memory loss, diarrhea, palpitations, extreme pain, I was stuck in a wheelchair due to being so exhausted and many more symptoms. I was on TPN, had numerous abdominal surgeries including a pacemaker in my stomach for my gastroparesis. My amazing specialist retired and sent my husband and I on a 3,000 mile adventure to Johns Hopkins, we moved from CA to MD in order for me to survive. I got much better but then started getting sick again and, after more tests and procedures I discovered I also have Crohn’s disease. Life with multiple rare chronic illnesses is not easy by any means. I have home nurses, doctor appointments multiple times a month and I can’t work but also can’t get disability support. But, after it all, I’ve finally learned to accept my new self. When the chronic illness hit so did a very long mourning period, I lost my life I loved, running 5 miles a day, working 40+ hours a week, hanging out with family/friends, I was so active….now active to me means showering and getting the grocery shopping done. But I’ve learned to embrace my new life and my husband and I (after numerous miscarriages) are adopting a baby. Life has a funny way of acting like a tornado and uprooting everything, but as my quote over the scar where my port was, that almost killed me from septic shock reads “There is peace, even in the storm” which couldn’t be truer. God bless!
Meet other people talking about living with adrenal insufficiency on RareConnect. Join the conversation, share experiences, ask questions, and discover your support network…