I do not think there is a one size fits all plan for dealing with injury, chronic illness or disease. This is merely the humble opinion of one person diagnosed with a chronic illness but it makes sense to me. My own experience is purely in the realm of living with MS, but I still think that each individual has to find their own formula to health, a sort of a personal wellness plan.
It has taken me a few years to get my own plan figured out. The process was one of trial and error. The first year after my diagnosis, I felt ill and exhausted a lot of the time. About a year and a half into things, the MS seemed to be progressing as evidenced by my MRI. The results of last summer's MRI motivated me to take some action. Until that point, I had not stuck to any drastic diet changes and I had not committed to a medication. I wanted to make some more informed choices so I did two things. First, I researched DMDs (Disease Modifying Drugs) a bit more, and then I also ordered extensive genetic testing to see if food allergies might be contributing to my symptoms.
I won't claim that my DMD research was particularly scientific, but it fit my personal style. I put a set of queries on this blog and out through emails to other people with MS where I asked about personal experiences with the drugs. Frankly, I was most interested in the unique experiences of the users. I wanted to hear about side-effects and how taking the DMDs effected people's day-to-day life. After looking through all the responses to my questions, I chose Copaxone because I felt it fit my lifestyle best. I wanted a drug with minimal side-effects that would hopefully allow me to make it to work every day. This proved to be a good choice for me because my only issue has been site reactions, and these have not had a major effect on my daily life. My most recent MRI showed no new lesions and a small decrease in activity on the left side of my brain.
The genetic testing involved a few steps. I ordered some of the tests online from a place called Entero Lab. I had to send in a cheek swab and a stool sample for this. They tested for soy, gluten, yeast, egg and dairy allergies. I also went to my acupuncturist and he did a blood test that we sent in.
The results from my genetic testing indicated an allergy to gluten and possible sensitivity to soy and yeast. The lab also suggested that I give up eggs and dairy because of my autoimmune disorder. This suggestion was later amended by my acupuncturist because I did not show a significant allergy to these things but rather, I was on the high end of normal. My acupuncturist said to eat these things in minimal amounts. I have tried to do this. One thing I did was switching to mainly goat cheese.
My blood tests indicated some other additional areas to watch. I was cautioned to stay away from most beans. I was also allergic to tuna and garlic.
Both sets of tests seemed to indicate that gluten was my biggest problem. At the time, I was vegetarian and relied heavily on gluten, soy, dairy and beans for my protein. I decided to cut all of these items out of my diet and to try eating meat again. It was hard at first, but now I am accustomed to my new diet. I think the hardest thing to give up was the gluten.
I cannot say for sure what changes have made the difference, but about a month after I started Copaxone, and a few weeks after I changed my diet, my daily migraines began to taper. This year I have felt much better then last year, so I am sticking to a few simple things.
My personal wellness plan is pretty simple. I get plenty of sleep. I try to carve time out of every day to meditate, do yoga or take a little mental break. I get regular exercise through my yoga practice. I try not to eat foods with soy or gluten, and now I eat some meat. I take my copaxone and I try not to take many other medications. This summer, I am mostly staying away from caffeine. During the school year, I will have some to help me keep going instead of relying on other medications. I am hoping to keep my caffeine intake down this year as well. I don't spend a lot of time dwelling on my diagnosis and for the most part, I don't worry about what direction the MS will take. I try to make healthy choices but MS takes the back seat to living my life.
I won't claim that my plan will work for everyone but I will claim that everyone has to engage in some trial and error to find a plan that works for them. I think a good plan has to be flexible because circumstances change. Just because I have a plan that works for me today, I do not delude myself that this plan is set in stone. I will keep adjusting as things come up. I think that is all anyone can do.
TISCH MS -- 18th Annual MS Patient Symposium
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