My Chronic Illness: What's Next

In early 1996 I was diagnosed with MS. Early symptoms included numbness from the waist down and fatigue. Within a few months I began to have visual disturbances including the loss of the central portion of my visual field. In other words, only the peripheral portion of the field was visible, until I tried to focus upon it and it too became part of the gray middle. With extreme medical intervention, most symptoms resolved for a time, but the poisonous intravenous corticosteroids left side effects which lingered for months. My course of disease has been relatively benign through the years, with fatigue ever-present and with tingling, numbness and a burning sensation of the scalp coming and going over the course of each day, made worse by stress, exhaustion or heat. When I am especially tired or stressed, my left arm and leg become weaker and I lose my balance. I haven't lost my vision again, but it has steadily declined, and my left eye sees the world in a bluer shade than the right.

Healthy food has always seemed normal to me. Mom had a huge vegetable garden in our yard when I was a child, and she reveled in preparing delicious meals with vegetables and leafy greens still warm from the sun. Mom grew up working in her family's garden and kitchen, but she also learned a lot from her mother-in-law, my grandma, Eula. My heritage includes implementing wisdom from the readings of Edgar Cayce, who was a friend of my grandparents'. Many of my family members were helped by personal readings with Mr. Cayce, who imparted health and life purpose advice among other information while in a trance-like state. My Dad even had a reading himself at the age of 5, shortly before Mr. Cayce passed away. Each reading was unique to the person requesting it, but we can still benefit from the readings of others who may have been dealing with trials similar to our own.

After my diagnosis, I checked into the readings to see what I could find about MS. Among other strange and wonderful bits of wisdom was dietary advice: 80% vegetables and fruits, mostly dark leafy greens. Organ meats, lamb and bacon, prepared crisply were prescribed. Fowl and fish, preferably wild caught, were suggested. Cartilaginous meats were helpful for regeneration of cells. Grains were to be limited. These readings were made prior to Cayce's death in 1945, but they sound very much like today's Paleo diet.

My research on MS treatments went beyond what I gleaned from my family's connections. I also studied what I could about the latest neurological approaches, and found clinical research about the effectiveness of diet in treating neurological conditions. One, "The Swank Diet" seemed pretty similar to the ancestral wisdom from Cayce's readings. I took my findings to heart, and incorporated what I could, always intending to plan more precisely when I could work it into my lifestyle.

In 2010, when I read Alicia Silverstone's The Kind Diet, I realized that the complicated nature of the percentages laid out in Cayce's readings, and also in the Swank Diet may have been what was blocking my getting more veggies into my diet. 100% veggies, my favorite foods, worked for me. The vegan diet quickly paid obvious dividends for my health. There was a surge of energy with the lack of dairy and heavy, slowly digested meats. Annual sinus infections and seasonal allergies disappeared. Unnecessary pudge fell from my frame as I easily maintained a healthy weight while eating as much food as I wanted. Best of all, for the first time since my diagnosis, the MRI during my first two years vegan showed NO NEW LESIONS! Though I became vegan primarily for health reasons, Wilbur and his compatriots were never far from my mind, and soon I began thinking of raw meat as body parts instead of food.

Early success notwithstanding, health is never static, even when it seems we've found a formula that works. Nutrient and hormonal levels continue to change with time, whether because of the cumulative result, because of stress or environmental factors, or simply because of aging. Amidst my vegan successes, there were issues. 18 months vegan I began feeling weak and even fainted for the first time in my life. My Integrative MD checked my levels and determined I had developed anemia from a B12 deficiency. My iron levels were fine. I began a regimen of bi-weekly injections. When the problem did not improve, the frequency of my injections was increased to twice a week. I learned to do the injections myself to reduce the cost of the shots. All seemed fine for a while.

In March of 2012 we unexpectedly lost my wonderful mother. The physical effects of grief should not be underestimated. It packs a wallop, and I still suffer from the magnitude of her loss. Serendipitously, immediately after my mom's death I was offered a job at the office of my favorite doctor, the legendary Christine Gustafson, M.D. The work was a blessing, proving to me that I could, indeed, put one foot in front of the other each day and make a difference in the lives of other sufferers of chronic and acute illness. Tragically, within months Dr. Gustafson unexpectedly passed away as well. I continued to work with Dr. Gustafson's partner, Dr. Elizabeth Board, but began to notice a precipitous decline in my health. Fatigue was overwhelming and I noticed strong cravings for shellfish and salmon. I added them to my otherwise vegan diet and 'fessed up on the blog, renaming it "A Midlife Vegan+".

During this time of fatigue, I also began to notice cognitive deficits. I found myself unaware of things my coworkers said had happened. I had gaps in my memory. I was unable to follow a train of thought. My writing ability diminished. I tried to cover my deficits, feeling my brain burning from stress as I'd pretend to understand what was being discussed, spinning a tale on the spot to explain the unexplainable over and over again, working hard to maintain the appearance of professional competence. The duplicity was physically exhausting and confusing. I was losing my mind. I finally had to suggest that the doctor hire another worker. I didn't know how much longer I'd be able to adequately represent the practice.  My next MRI proved the loss of my mind was not in my mind. The proof was unmistakable -- the MS was again wreaking havoc. I left my job.

For a few months now I've been working on healing myself with rest, yoga and meditation. When we become still enough to notice, the next step becomes apparent. From multiple sources over the past few months, through contacts, professional and otherwise, the work of Dr. Terry Wahls has fallen into my lap. Around the time I was leaving the office, one of the doctors mentioned that I should look into mitochondria and its link to MS and other autoimmune diseases. I downloaded a book onto my Kindle by Dr. Wahls called Minding My Mitochondria. Not invested in the notion of these organelles within cells and what they might mean to me (and baffled and confused about everything at that point since I was losing my mind, after all) I lost interest, and actually forgot I had downloaded the book. Over the ensuing months, amidst impenetrable brain fog, there was a funny little familiar feeling each time I read about, or heard about, Dr. Wahls. It seems unbelievable I wasn't making the connection, but it is difficult to understand brain fog if you've not experienced it.

One day I made an off-the-cuff sassy comment on a Pinterest pin which seemed to denigrate the vegan diet. I had not bothered to read the pinner's article. Within a couple of days the author replied, saying she wished I had read the article, that I'd have understood it was in jest, and that in fact she herself had been vegan in the past. I apologized for not having read the article and we had a brief, friendly exchange. When she learned I have MS she asked me to watch a short TEDx talk video. It was Dr. Wahls. Finally, I made the multiple connections. Dr. Wahls, a successful medical doctor, world traveller and athlete, had succumbed to MS and was quickly confined to a recumbent wheelchair. With her scientific mind and time on her hands, she resolved to solve the puzzle of what was happening to her. The importance of supporting the mitochondria of our cells became her focus. Despite neurologists' claims that regeneration is impossible within the Central Nervous system, Dr. Wahls effected a nearly complete recovery from her disabling symptoms. She reports many similar recoveries of patients utilizing her protocol. Through my work with the Integrative and Functional M.D.'s, I happened to already have all the nutrition requirements covered in the form of supplements -- some 40 pills a day, plus the B12 shot. But I learned from Dr. Wahls that the nutrients in food do what nutrients in pills cannot. The reasons for this difference in efficacy are unclear. My tight little vegan mind began to open.

I had such dramatic early success with the vegan diet. Was it because I had stopped eating meat? (I never ate much meat before anyway) Maybe it was because I had stopped dairy. Maybe it was because I had added a lot more vegetables. Honestly, it's become apparent the vegan diet for me has now reached a point of diminishing returns. But I love eating like this! What about Wilbur? I am obviously conflicted, but it's time to tend to my health. In watching the Wahls TEDx talk, her discussion of organ meats got my mouth watering! I wanted liver and onions! With a big squeeze of lemon! Weird. That night, as I was eating my Tofurkey sausage my husband had grilled me, I asked him for a cubic centimeter of his steak. I didn't want it the way I still want salmon and liver, but I needed to see what would happen. I slowly put the meat into my mouth and chewed carefully, trying not to think about the sweet faces of cows. It didn't taste good to me. It didn't taste bad. I swallowed. Immediately, palpably, a grounded strength spread through my system.

As I've been losing my mind, it's happened so gradually that I hadn't noticed the frenetic panic in which I've been living. In order to answer a simple question such as, "How'd you sleep, hon,?" I'd had to gear up all my energy and focus,

just         to        understand         the         words.

With that small bit of meat, I was momentarily relaxed. Thoughts flowed. Focus was effortless. I thought straight for three days. When I began getting foggy again, I fixed myself the slice of liver, the way I'd been craving it. It tasted good. It felt heavy -- I'm not used to eating such filling food. I took my time. The frenetic panic left me once again and I could think. Today I ate a boiled egg. Eggs are not on Dr. Wahl's diet. I am not sure why, but I think it has to do with food sensitivities. The egg gave me some calm strength for a few hours, but wasn't as sustaining as the meats. I am learning all I can about Dr. Wahls' approach. It is clear gluten is the root of many evils for folks like me, so getting rid of that will be an initial focus. I am not sure in what way exactly my diet will change from here on out, but it will be changing. Being vegan for four years has ingrained a psychology about food preferences that will make any transition complicated. I think journaling about what I eat and how I feel will be helpful as I go through the transition. For now I am still mostly vegan, minus gluten, minus some legumes, plus some meat and fish here and there initially, and if my health improves by leaps and bounds I may go further.

I've loved being vegan. I love and admire all you vegans. I don't want to let you down, and I don't want to let the animals down. My decision to change my diet has been reached after years of slowly declining health and many desperate, hopeless moments. Mainstream medicine doesn't have the cure for what ails me, so I need to walk this path. If I find health I will necessarily need to change this blog, obviously, but during this period of transition there seems no point in jumping to that end. In the meantime I have started a parallel blog, A Midlife Regeneration which will serve as the food and health diary that Dr. Wahls suggests. I will continue to contribute to A Midlife Vegan+ any fabulous vegan food that I create or eat along the way. Thanks for your understanding and patience!