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.
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5 comments:
Hi there! I found this post to be very interesting as I have Crohns Disease (another autoimmune disorder). I like the idea of a Personal Wellness plan!
Yes I do like the way, you have found your plan. I have seen so many different ways to deal with MS.
kim
Great post! I'm convinced that every person is chemically unique and agree with you that one size (treatment plan) does not fit all. Unfortunately, the medical system seem to prefer treating people as if we were all one size.
It definitely is more of a challenge to figure out what treatment plan works best for us as unique individuals, but it's so much more rewarding and we learn so much more throughout the process.
I've been diagnosed with MS for almost 5 months now and am giving myself a year to discover my Personal Wellness Plan. I'm sure it'll change over time, but this way I'm approaching it as a journey of discovery rather than a final destination.
Sounds really great. I think I'll get tested too.
Great to have seen your blog. Very interesting and so informative.tro
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