am currently living in Minnesota with my husband and two young children. I am working remotely as a Beautycounter Consultant, which allows me the flexibility we need as an “autoimmune” family. I have a background in special education and have a passion for advocating for underserved communities.
I had symptoms from Crohn’s Disease for about 2 years before I landed in the ER with a bowel obstruction a week after my 19th birthday. I was home for summer break after my Freshman year of college in NYC, so my healing journey was a bit difficult. I was diagnosed with Crohn’s upon the surgery, and was immediately put on Pentasa and Flagyl. I remember having abscess and infections from the surgery, and once I went back to New York, I saw doctors who put me on 6MP or Mercaporterine. I saw a GI Doctor at Mt. Sinai, where supposedly Dr. Crohn who discovered the disease was a researcher. I remained on 6MP for several years until I ultimately was getting frequent infections and my white count was concerning. I moved back to MN eventually and was put on Remicade, which put me in a beautiful remission for about 8 years. It then induced Lupus in my body and then was recently switched to Stelara injections which I give myself at home.
My Autoimmune Illness has affected every aspect of my life, but I would say most profoundly it changed my perspective on careers and the status quo of my peers. I still struggle with not measuring myself with the same ruler as y peers, because they are not dealing with the complex health issues I am facing at a young age. But I learned through much pain and heartache, that my illness was a gift in helping me have such difficult challenges with my career and lifestyle, that it forced me to examine what really was worth it in life for me and to adjust my expectations as such.
A clean and mindful diet is the number one thing that will make or break my symptoms. I have stay away from alcohol, spicy foods, and fried or heavily processed foods. Those 3 will hurt my gut almost immediately. I have found therapy very helpful to deal with the unique challenges we face. Finally, exercise is key to me feeling good and my gut moving well. A heating pad is always my best friend, and a hot bath works for me when all else fails.
I still struggle with moderation, which I found is key to me remaining an active member of my family while still feeling well. When I overdo it and try to keep up with my friends, I tend to “pay” for it physically the next day. I have learned to set boundaries and say “no” when I’m not feeling well, but it always is something I have to practice and remind myself of. I have a lot of co-morbidities that I am struggling with, such as endometriosis, EDS and Fibromyalgia, so I am currently trying to differentiate between my symptoms and how to manage them.
“Back in the days when pots and pans could talk, which indeed they still do, there lived a man. And in order to have water, every day he had to walk down the hill and fill two pots and walk them home. One day, it was discovered one of the pots had a crack, and as time went on, the crack widened. Finally, the pot turned to the man and said, ‘You know, every day you take me to the river, and by the time you get home, half of the water’s leaked out. Please replace me with a better pot.’ And the man said, ‘You don’t understand. As you spill, you water the wild flowers by the side of the path.” And sure enough, on the side of the path where the cracked pot was carried, beautiful flowers grew, while other side was barren. ‘I think I’ll keep you,’ said the man.” – story told by Kevin Kling
I recently heard storyteller Kevin Kling speak, and it was incredibly moving as someone with a disability. He had a physical disability and learned to appreciate his different as something that brought awareness and beautiful change and connection. I have recently learned to appreciate my autoimmune disease as my struggle that allowed me to widen my perspective and grow from it in a way I don’t think I would without the hardships. It sounds corny, but when we view or illness not as a failure or that we are useless, I think it’s important to know that it’s okay to feel that. Other people feel that too. So it’s vital that we own it, and then learn to share our gift of knowledge and growth with others.
Find Margaret | @ittakesavillageIBD