Joyce Hoffman

About the Author: Joyce Hoffman is one of the world’s top 10 stroke bloggers according to the Medical News Today. With the help of her team, Joyce created this newsletter inspired by the format of Dear Abby. The newsletter is a dialog with Joyce on issues only a survivor could fully understand.You can find the original post and other blogs Joyce Wrote in Dear Joyce.

As you might well imagine, many things changed after three back to back strokes, a craniotomy and the discovery of a congenital hole in my heart. Oddly enough, even all that did not cause me to make permanent changes that would benefit my overall well-being.

Oh, I have made many temporary changes throughout my life, but none were permanent.  I can say with certainty that it is more difficult for me to focus on changing my dietary habits than it is/was to physically recover from all of the above.Why? Hell, if only I knew,

During stroke recovery, I had several therapists, nurses, doctors, family members, I went to a stroke recovery facility and the focus was on getting me better. They taught me to walk again, how to shower, other people wiped my ass, sat me up, dressed me, made my bed, walked my dog, shopped, cooked, cleaned until I started to do those things for myself. Some of those skills came along relatively fast, others took over a year.

More than two and a half years later, I find myself still working on others.However, making lifestyle changes, in particular, dietary changes, is a lone endeavor.  Earlier this year, I was diagnosed with a rare autoimmune disorder that causes my body to attack the mucous membranes-mucous membrane pemphigoid or MMP.

For me, it started in my mouth. A tiny sore spot, the size of a pin prick, was the first sign. Over the following weeks, my gums began “bubbling” up and literally sloughing off. The first time it happened was while I was chewing a banana and a piece rubbed against my gum, causing a chunk to come off. Then the bleeding started. Not just a little, either. After brushing, blood would pour out between my teeth as if I was an actor who bit into a prop to cause that effect.

I was terrified and felt like a leper. However, I fought really hard to get treatment and finally found it. But, it requires day long trips to UCSF, 100 miles away. (Did I mention that I no longer drive very far since the strokes?)Well, recently, a rheumatologist strongly encouraged me to try something called the autoimmune protocol(AIP).This is a specific way of eating, the first of which is called the elimination phase.  During this time (my doc suggested a minimum of 7 weeks, 90 days is preferable). In this phase,  you remove MANY known triggers from your diet so that your gut can heal (gut is where the majority of our immune systems lie).

So, what you end up with is all natural meats-no hormones, grass fed, free range, etc., most veggies, many fruits, water, black or green tea, real maple syrup, real honey (in small amounts).No nightshades-tomatoes, tomatillos, peppers, no eggplants, no beans/ legumes, no grains, no pseudo-grains, no dairy, no coffee, no alcohol, no spice mixes, no nuts, seeds(pumpkin, sesame, flax-none of it), no food coloring, no processed sugar, no corn, no potatoes(yams and sweet potatoes ARE allowed as they are completely different from starchy potatoes), no nitrates, no wheat, no baking powder, no sugar substitutes or alcohols, no eggs (I follow paleomom.com).

Oh, I also went back to intermittent fasting and typically go 16-20 hours between meals. Not always, though. But never less than 14 hours. I am a single woman. I have a roommate and he drinks soda all day, smokes, eats a trough of ice-cream every night and cannot keep enough weight on his frame.  Our 11-year-old grandson is here at least half the time. He eats like an 11-year-old and loves things like french toast, pancakes, waffles. So, all that stuff is here.

What I have noticed is that I am on this journey alone, not because my family doesn’t care or want me healthy, they just do not need or want to be as restricted. So, the grown ones don’t expect me to cook for them (well…sometimes my kids do. I’m a really good cook!) My grandkids are 2 and 11 so, they don’t count. But, right now, it FEELS like there are SO MANY no’s…TOO many.

It feels very isolating. Not just because sounds, lights and crowds can cause an all out meltdown since the strokes but, being surrounded by all the things I cannot have can also be too damn much. It reminds me of the other things that I feel are absent from my life, affection being the biggest. (Never underestimate the power of a good hug, kiss on the cheek, a card or note, etc.)

Since the strokes, life became much smaller. Doing this protocol sometimes makes it feel infinitesimal. I have to be my own support system, my own motivator. I have to celebrate myself and learn to express myself differently. Not an easy task after being scrambled up. Things like concentration, creativity, appropriate emotional expression are all very different now. I’ve been aware of that for some time. But, what I often forget is that life doesn’t care if we had strokes or not, it just keeps happening. We all have to figure out ways to do things with our current abilities.

The reality is that is this way it is for everybody. We always had a variety of abilities, of emotions and coping mechanisms.In this moment, I am acutely aware that even though I have experienced miraculous healing, there is still fall-out from the strokes and surgery. In the absence of so many of my favorite foods, alcohol, coffee and even sex, it has become crystal clear that I used each of them like blindfolds for feelings that I could not deal with at the time. I have to work through all of it, just as I am, with my eyes wide open. And I don’t like it.

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