Living A Physically Active Life With Three Chronic Diseases
RA, GERD, B12 Deficiency, and Running.
I consider myself a healthy person. Until recently I did not see my three medical conditions as chronic illnesses or diseases. The National Center for Health Statistics defines chronic disease as “a disease that persists for a long time. A chronic disease is one that lasts three months or more….Chronic diseases generally cannot be treated by vaccines or cured by medication, nor do they just disappear.”
I have three chronic diseases: rheumatoid arthritis (RA), GERD (gastroesophageal reflux disease), and myelopathy of the spinal cord due to severe B12 deficiency. Although these serious diseases have incapacitated me at times, I live a fully productive and very physically active life.
I was first diagnosed with rheumatoid arthritis after the birth of my first-born. I was unable to brush my teeth and dress myself. When my second-born was about five years old, I had an even more incapacitating flare-up. I was unable to brush my teeth, dress myself, get in and out of the car, and run.
Sometime in 1996, while eating dinner, a piece of chicken got stuck in my throat. A series of tests from an endoscopy, to a manometry and a pH test, to a video swallow revealed I have a hiatal hernia, low LES pressure and ineffective peristalsis, and reflux (GERD). I have endured many episodes of food getting stuck in my throat. I have had 13 endoscopies.
Sometime in 2008 I began experiencing twitching and cramping in my fingers, painful calf spasms in my right leg, painful curling of my numb right toe, and painful numbness and tingling in my right leg and toes. It spread to my left leg. I lacked energy. My legs and feet could not move in the manner they are accustomed while walking and running. I was tested for ALS and MS. A spinal tap revealed high protein levels. After 48 vials of drawn blood in the span of two months, three doctors, and no diagnosis, a top neurologist properly diagnosed me. In 2009, I was diagnosed with myelopathy of the spinal cord due to severe B12 deficiency. My body does not produce B12. I was immediately placed on B12 shots and oral B12 for life.
These chronic diseases have sidelined me. But I live a very physically active life that keeps me healthy. I’m a runner. After my first bout with RA went into remission, I ran my first 5K in 1989. When my second-born was six months old, I ran my first half-marathon in 1991. Two years later, I ran my first marathon. I ran my first 50-mile ultra endurance run in 2005. I ran two 100-mile ultras in 2011. In 2012, I ran my first 24-hour ultra event and placed third overall woman. In 2013 my RA returned. I was placed on Methotrexate and Plaquenil. But I didn’t let it stop me from walking and running slowly. I went back to the same 24-hour ultra event and managed to place seventh overall woman.
They Won’t Just Disappear
My three chronic illnesses cannot be treated with a vaccine, can’t be cured, and won’t just disappear. I can’t anticipate when I’ll wake up with painfully stiff joints and when RA will resurface again. I can’t predict when I’ll gag on a swig of water or when a piece of food will get lodged in my throat that will require a trip to the ER and the OR for another endoscopy. Even though I get bi-weekly B12 shots and take daily oral B12, I can’t prevent my fingers from suddenly painfully twitching or locking. I cant’ prevent my toes from suddenly and painfully cramping and fanning out, or painful calf and leg cramps in the middle of the night and when I stretch in bed in the morning. I grin and bear them. They will pass!
While another RA flare up can present itself at anytime, I have changed my diet to prevent it. My husband and I continue to eat lots of fruits and vegetables (we now have an organic vegetable garden). We have eliminated wheat flour, dairy, rice, beans, corn, and sugar. These processed foods are known to cause inflammation and joint pain. We cook and bake with almond and coconut flour, drink almond and coconut milk, and have replaced sugar with coconut sugar. But I must confess — even though we bake Paleo donuts, cookies and muffins, there are moments when I have to have that supermarket donut!
Since my severe B12 deficiency diagnosis, I have trained for and finished eleven ultra endurance runs. My B12 shots gave me back my running legs! In a couple of weeks, I’ll be running my 20th ultra and my 6th 24 hour endurance event. Untreated B12 deficiency has serious consequences: paralysis, dementia, and psychosis.
As for my GERD and my abnormal esophagus, in 2016 I had 3 endoscopies. In January I learned my GERD has progressed. I have Barrett’s esophagus, a precursor to esophageal cancer. I continue to be monitored. I avoid acidic foods. Chocolate should also be avoided but it’s not always easy. It’s a good thing I don’t drink alcohol or smoke — both must be avoided. My favorite drink is a nice ice-cold can of seltzer, especially after a long run. But carbonated drinks should be avoided, too.
Patience, Endurance, and Faith
Despite these chronic health challenges, I have a blessed life! I have a loving and patient husband who takes care of me. I have supportive and caring children. Good family support is essential in the lives of people with chronic illness. I have very good doctors who know how important running is to me. And I have learned that when life throws you a curve, swerve, lace up those shoes, and walk or run when you can. I’m as disciplined about my chronic illnesses as I am about my running, which keeps me going and thriving. Patience, endurance, and faith also help me to manage my chronic illnesses and to live a physically active life.