The older I get the more confused I become about my health. That sounds odd coming from this midlife woman because we’re supposed to get smarter as we age. But my health issues have grown exponentially this year and I’m running in different directions searching for solutions to my problems.
Where to turn for help?
My health issues are not all MS-related, and as many of us know we should never automatically credit our disease for every ailment we have. That’s where the confusion begins. It’s difficult to know where to turn for help.
As I’ve written before I received four digestive diagnoses in 2017: acid reflux, hiatal hernia, SIBO (small intestine bacterial overgrowth) and a bout of diverticulitis. The last two were extremely painful and SIBO is chronic. Yes, another chronic illness to add to my cocktail.
My gastroenterologist gave me a few pamphlets, told me to focus on eating more fresh fruits, vegetables and whole grains and sent me on my way.
Educating yourself when doctors don’t have time
Should I trust my doctor for sound advice? After all, I trusted him to perform colonoscopies, endoscopies and countless other invasive tests. Why shouldn’t I trust him again?
The answer is that not all doctors have the time or inclination to sit down for informative discussions on what patients need to know. Important information such as recent studies and research, recommended books to read or how to heal yourself using complementary medicine.
In today’s healthcare climate we’re lucky to have more than the allotted time for an appointment or abbreviated instructions on taking the doctor’s usual solution of relying only on traditional medicine.
A double whammy
I followed my gastro’s instructions. I ate loads of fruits, vegetables, and whole grains but the wheat, unfortunately, caused excruciating bouts of stomach pain and ongoing diarrhea which, you can imagine, set my MS into motion. A double whammy.
I knew something was awry and decided it was time to put my advocate hat on again. I turned to Amazon for books on healing my gut and asked trusted friends with similar diagnoses for sound advice on healthy eating. Then I tested the waters of eliminating gluten, dairy, and sugar from my diet.
High amounts of stress
I also needed to manage the increase in stress because my MS was noticing my body’s reactions to food. My legs were weaker and more numb and I couldn’t think clearly. I felt sad and anxious and knew the high amounts of stress I was experiencing was not optimal for my health.
Once my stomach began feeling a bit better after my change in diet I went back to my daily walks at our local park. My slow pace and short distance would seem ridiculous to some, but being out in nature and getting any exercise at all made me feel like a million bucks.
But fate had other ideas for me. At the park, I felt a slight twinge in my left ankle and knee that soon turned into pain. I found myself back home resting in bed with an ice pack.
The need for quality care in one central place
Several years ago a dear friend told me his dream about a place where patients could find quality medical care under one roof. A dedicated internist himself, my friend often witnessed the anguish he saw in patient’s eyes when, after a thorough examination, he advised they see a specialist miles away. Much like an MS comprehensive care center, his dream center would house every type of medical specialist in one building. Electronic medical records would be in a shared system, and the disability community would not have to travel long distances for the doctors they needed to see.
I only wish my friend’s dream became a reality. Our comorbidities illustrate the need to ease our MS journey by helping us find answers in one central place. If this dream came to fruition it could help us feel better, not worse, while easing our anxieties and fears.
A comprehensive health center to make our lives simpler. Wouldn’t that be perfect? It certainly would take some of the confusion out of our ongoing health equation.
Tips to advocate for yourself
But back to reality for now. When we’re faced with health questions we need to step into our advocate shoes. First, we need to breathe, breathe, breathe. Then:
- Do your research
- Communicate with others
- Question advice given and ask for more information from the medical community (from a list of questions you create)
- Explore websites from trusted sources on the condition(s) in question. Subscribe, if desired, to newsletters
- Watch podcasts to learn more
- Sign up for events of interest (Example: I recently attended a conference about gluten/allergy sensitivities)
- Explore Youtube for trusted videos on subjects of interest
- Try stress-reducing avenues such as meditation, yoga, walking and reading for pleasure
- Journal your thoughts and feelings
- Go outdoors to sit, walk, bike or run. Nature is restorative and healing
- Contact Multiple Sclerosis organizations for names of local doctors, nutritionists, seminars or support groups, such as The National Multiple Sclerosis Society (nmss.org) or the Multiple Sclerosis Association of America (mymsaa.org