My first undiagnosed attack was when I was 15: a combination of muscle weakness, insomnia and abdominal discomfort. It left me with confusion, confusion, and muscle weakness. anxiety. These symptoms would not have been too scary on their own, but when combined, they were very scary.
I felt worse and more severe symptoms, until I was 20. I traveled the country and visited more than 20 doctors in 5 states. Each blood test and every lab result came back as normal. On two occasions, I was referred to allergists to test for food sensitivities. Again, "normal."
These years I have also had the opportunity to meet with many nutritionists and dietitians. Although I was able to learn a lot about healthy choices, and supplement, none of these actually helped my abdominal pain.
One doctor told me it was toxic stress. A second doctor sent me to a therapist, claiming that it was all in my head. I was tired of being called a drug-seeker or a head case, so I began to experiment with managing stress my own way.
One way I tried to make progress was by trying out different diets. It all was there: paleo and the South Beach Diet. No refined sugar, wheat-free or dairy-free, vegan, vegetarian, pescatarian, low-carb, slow-carb, no carb. I even briefly considered becoming a complete vegan. I also took magnesium and used essential oils. Don't forget the cleansing! Cayenne, Ayurvedic, green, candida--I've lost count. Although I did not find any pain relief, it didn't occur to me that I might be doing more harm than good.
For a variety of reasons, I tried the keto diet in January 2016. I wanted to improve my running performance and lose fat instead of sugar. It would also help with my constipation and debilitating stomach pain. Healthy people tend to cut out sugar, dairy, and grains.
Wrong. It was a surprise to me that my colon would shut down six months after I started this diet. I ended up being hospitalized 27 days in total over the course 5 months.
My doctors were initially stumped. The team from St. Mary's Hospital, Rochester, MN examined me and gave me a series of tests including one for porphyria. The one that I received was the most abnormal of all the tests I've had over the years.
AIP is a rare genetic condition that affects less than 3,000 Americans. They diagnosed me with acute intermitent porphyria. I discovered that symptoms can come in waves and last for days or even weeks. I am able to live a normal life with no major flare-ups.
It turns out carbs can help with symptoms. This is why keto caused so many problems. When I started feeling symptoms, my doctor told me to eat potato chips. My liver produces heme from carbs, which can trigger symptoms when it is low. It's still difficult for me to accept that the food group I used to demonize is actually key in my ability feel better. It has made me feel better.
Instead of avoiding certain foods, I now avoid stress-inducing situations, limit alcohol intake, prioritize sleep and monitor my hormones. If my body is cooperative, I can run slightly more than 10 miles per week.
I also discovered a medication that works. My treatment for AIP is still very experimental because it is so rare. Only a few porphyria specialists are in the U.S., and I visit Salt Lake City once per year to see a doctor. He is a member of my John Stoddard Cancer Center team and I see him once a week at a local hospital to receive AIP medications. The treatment takes approximately three hours. Although it's not fun, the treatment is effective.
I wish more women understood that they shouldn't accept an unanswered question as their fate. Be your own advocate. Ask questions if you aren't clear. There is no easy way to diagnose every disease.
My food motto is "Everything in moderation". I try to eat a variety of foods while still being true to my feelings.
My journey taught me one surprising thing: Not all diets are healthy. Sandwiches are a great way to have fun in life.
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