What started as abdominal pain during long runs & slowly advanced to passing out at the Boston Marathon, 39 months later, finally has a name. I underwent two major surgeries, numerous doctor appointments, dietary changes, & experienced a huge decrease in my mileage (to avoid another fainting episode) during those 46 months.
There were many tears. A copious amount of frustration. Embarrassment at the “runner” I had become (Who passes out at 7.1 MILES & gets hauled off in an ambulance?!?!?!?!).
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| Starting line at Boston! |
Yet I’m A LOT Type A & wouldn’t accept this new reality. A couple things happened in April & May of this year that led to the big “AHA” moment.
One of my best friends noticed, while we were enjoying the views on the rooftop of a frat house, with our feet dangling off the side, that my feet were purple. She pointed out that I must be cold & we had to go inside. It was not cold. But down the sketchy ladder we went. (The frat house & sketchy ladder have absolutely nothing to do with my disease, yet I think it ups my cool factor, since I passed out at mile 7 in Boston. We MAY have been there with our college kids.)
In May, Kiana, who was home from school for a week, noticed my feet were purple while I was standing in the kitchen making dinner. She mentioned that her feet are purple often due to POTS (postural tachycardia syndrome). This led to a lot of questions about my symptoms. And a call to my doctor.
My doctor thought there was a good possibility that I have POTS based on a heart rate & blood pressure test in his office. He was certain that if I increased my sodium consumption, I would be fine. I watched my daughter first hand struggle with POTS for 3 years, before a diagnosis at Mayo Clinic in Rochester, & knew that although sodium intake is part of the treatment plan, it’s way more complicated than eating potato chips!
Thankfully I still communicate with her doctor in Rochester, & he recommended one of the few POTS specialists in country. 4 months later I was seen at Mayo Clinic in Scottsdale & after 4 days of testing, a POTS diagnosis was confirmed. I also have Mast Cell Activation Disorder, which is common among ⅓ of POTS patients. This disorder causes stomach inflammation and pain It’s intriguing because many things that I thought were “normal”, are not normal at all.
*Heat intolerance. I don't do well when it's hot. Especially while running. Yay for now living in Colorado, except when it's 80 degrees in the afternoon in the middle of November.
*Hives after a day at the beach
*Hives after running in the cold (totally thought EVERYONE, but Steve & Kai, came in from the cold itchy with hives).
*Near fainting after standing for a few minutes when pregnant. During both pregnancies, I sat down in line at the grocery store, during church, & holding conversations with people standing still. Multiple times. Thought all pregnant women felt faint.
*While sitting and talking to someone for awhile (teacher’s conferences, interviews, dinner table conversations, ect..), they become blurry and small and I can’t hear them anymore. Guess that’s not normal and it’s because the blood is pooling at my feet. It happened while talking to my Dr and he noticed.
FACEPALM.
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| Napa Valley Marathon 2013. 1st race with the abdominal pain. Mile 22ish and I'm thinking the pain is making this marathon not so fun. |
I’ve had this for a VERY. LONG. TIME. My running has kept the severe symptoms at bay yet it finally caught up with me. Dr said it’s rare for someone my age (I glared at him when he said it) to become symptomatic. He also said, and this is my favorite, that I'm an example of “45 is the new 25”. So there’s that. ;) It's not a well known disorder yet in the last few years researchers have noticed a genetic link.
Gravity is not my friend and when upright, including sitting, blood pools in my feet & stomach. Which is why I have excruciating abdominal pain while running, as blood is not going to my digestive system. And why I’ve been getting dizzy.
The good news is I now have a confirmed diagnosis and a plan to manage the symptoms. It is not curable but manageable. I’ll continue to run as exercise is part of the treatment protocol. I need to consume 10 GRAMS of sodium a day. That 1 is hard as I’m not a fan of salt. Wearing compression on my legs & abdomen will help with blood flow. I also have 2 prescriptions that I now take daily.
I’ve been asked multiple times if I have my sights on racing again. And the answer is honestly, NO! When you’re forced to step away from something, you reevaluate what brings you joy. I accomplished more than I thought my body was capable of doing. I feel I am in a good place in regards to life balance. Running is back to being my stress release & the mountains are my playground. Not saying I won’t sign up for a race, but the pressure to PR just isn’t my focus anymore. Being an "outsider" of the Goal PR Training Party has also given me a much needed perspective on what is most important to me.
"He is a wise man who does not grieve for the things for which he has not, but rejoices for those which he has." Epictetus
About POTS
http://www.dysautonomiainternational.org/page.php?ID=30
