My story begins in 2005, with the pregnancy of my youngest. When I was about 6 months’ gestation I developed drop foot, though I didn’t know that was what it was called. I thought the baby was sitting on my sciatic nerve like the first baby. During my first pregnancy, I experienced about 24 hours of not being able to stand on my legs. I would immediately fall. Then the baby rolled and things went back to normal. So, with the second pregnancy I thought a similar thing was happening until the OB said that was not the issue and I should see a neurologist. So, I did. The young doctor did some strength evaluations and an electrical impulse type test to see if the messages where getting to my foot. He also asked about my fatigue (yes, I was more tired but now I have a toddler and pregnant so I thought nothing of this fatigue) and other sensations such as numbness in my hands (again didn’t put much thought into this because I was always washing dishes or the baby) After his evaluations he said to me, “Well, I think that you are either crazy or you have MS”. He wanted to do an MRI but not until the baby came. I went home crying to my husband “the doctor thinks I am crazy!” a month later the baby came and I had my MRI which showed two large lesions on the spine at C3 and C4. The places on the spine that would affect the nerve signals to my extremities. The day I went in to receive the results of my MRI I had both babies with me in the double stroller (newborn and 17 months) I was hormonal from the pregnancies and I could not walk without the brace on my leg holding my foot up. The doctor told me it was MS and explained what that was and how it was too soon to know which kind or if I would ever walk again. I was devastated. Actually, devastated doesn’t describe it. I was scared. Scared for my babies whose mother may not be able to care for them. I then was referred to a neurologist who specializes in MS and immediately put on intravenous Solumedrol and weekly shots of Avonex.
After a year of weekly shots, 800 mg ibuprofen the night before to ward off the flu like feelings from the shots, Provigil for fatigue, and an average of every 3 months needing more IV Solumedrol I felt so weak and sick I was falling into a depression. I couldn’t stand up and balance in the shower to shave my legs or carry the vacuum up the stairs or bathe the babies and wash the dishes in the same night because that was too much hot water and it would cause my handles to have pins and needles to the extent of pain. At 28 years’ old, life was hard. Thankfully my husband was very supportive with everything from the babies to cooking and cleaning.
Then the Avonex caused my liver enzymes to elevate and the doctor wanted me to switch to Copaxone. While we were poking around on the web looking for reviews on the side effects of Copaxone, we came across several sites that discussed approaching symptom management though lifestyle (diet mostly and exercise and stress management) and also found very scary things about Copaxone such as craters in the skin at ejection sites (I was 28 and didn’t want to look as bad on the outside as I felt on the inside) so I decided to read the book by Dr. Swank and follow his advice. I cut out all processed foods and dairy and other saturated fat such as red meat (this one not so hard because I didn’t ever feel good eating it anyway). I felt better, a lot better, but not myself. I researched further and found Direct-MS and their research on diet and how it effects the body. Dr. Embry who heads up this research has a diet he calls Best Bet Diet for MS. He has his son on this regime and his son is doing great. I talked with my husband and then my doctor and decided to jump head first into this world of alternative health so see if it would make a difference before beginning the new drug my doctor recommended.
Best Bet Diet (BBD)
Per Direct-MS the first step is to get an ELISA test to see which foods you are sensitive to. My results came back highly lactose intolerant (yeah, kind of figured that out after the repeated stomach aches after the tubs of Ben and Jerry’s) (yes, I would eat the whole tub, don’t judge you have been there too) and gluten sensitive. The BBD omits dairy, gluten and legumes. I gave up dairy and gluten but legumes were just too much for me to give up. I had toddlers, not a day goes by we didn’t eat peanut butter! To set the setting, this was back in 2007 when gluten free was not a “thing”, it was difficult. However, I felt great. My energy was getting better and my symptoms slowly disappeared. I was hooked. I became a believer. I wanted to know more and more and I wanted to spread the work, so I began taking classes at Clayton College of Natural Health for Holistic Nutrition. I learned so much in the two years I studied. SO MUCH. I also attended Life University for Nutrition and Dietetics.
I eventually removed legumes my from diet and I actually do not miss them. As it turns out, beans created so much gas and the peanuts cause my hands to swell with inflammation. I learned more and more about food and inflammation. I experimented with reducing, then eventually giving up, grains after an additional diagnosis of Sjogren’s Syndrome and Lupus. By this time, gluten free had become main stream and things got easier, and then Paleo became a thing which also helped me feel a bit more “normal” with my dietary habits.
So, this is where my current story leaves us. Trying to balance kids, work, and my health. I hope my story helps you to not feel alone or maybe inspire you to join me in this journey of trying to balancing this Crazy life with autoimmune diseases.
I can’t say that I am completely without symptoms. I am majority of the time but when I get too busy to get exercise or lax with nutrition my stress gets high and fatigue and gut issues will arise; along with poor sleep and attitude. I found health is the lifestyle. Healing foods, movement, positive attitude and stress management.