Rags 2.0 Dishes

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So I have this other blog which has sat unedited for more than a year. It’s full of recipes, but as of yesterday relaunched with a new edible agenda.

Even if you’ve been there before, check out the changes and new recipes!10313308_10152866448678038_6391666696199100858_n

My goal is to cook according to Wahls Protocol, but this is a continuing journey on which I am not infallible.

Sometimes I’ll still eat a little cheese. And maybe I put that cheese on organic, GMO-free tofu instead of actual animal protein. Oh, the adventures I have!

Don’t you judge me.

Or do, and give me consternation and feedback. I’m easy.

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“Producing” Results

11230223_10153911164248986_2330038506098254361_nIt hasn’t been a luxury hiatus* full of spectacular new changes, so don’t worry. The summer has begun, and I’m indoors again today. This past week my diet fell (way) short of vegetables, and even without gluten dancing anywhere into frame I’ve been paying for it with fatigue, dizziness, and a touch of cognitive dulling… so I used the opportunity as an experiment! Yesterday I focused, with effort, my remaining smarts on fixing produce-based meals. I ate at least 3c of kale (kale chips are a blessing!), 1c of zucchini (as noodles!), 1c of cabbage, and 2c of broccoli. That still leaves me about 3c short of what my daily intake should be, but even still… well, I am farting more.

Today’s results are in: It wasn’t a punishment to get out of bed this morning, and I feel more awake while being awake. I took the garbage outside and to the curb. I am planning dinner and making a grocery list, and don’t feel weepingly overwhelmed by the myriad of other chores I feel the impetus to undertake. The difference is incredible; you’d better believe this grocery list is heavy with greens.

Rehearsal pic

Rehearsal pic

It’s fortunate that I need to be confined to air conditioning right now because my wife’s got a lot on her plate with work and rehearsals as The Witch in Into the Woods. She hasn’t been on stage since we first met (and I fell in love with her before I ever met her because she was so damn good… I’ve probably talked about all this at length so let me put a kibosh on the gushing).

*I guess “luxury hiatus” could, under different circumstances, include an entire day devoted to eating vegetables.

Musical Medical Chairs (+GRATITUDE ADJUSTMENT)

This is still a big problem.

This is still a big problem.

Because my neurologist’s office makes a big point about not switching doctors within the practice, I’ve just been needlessly detained for weeks while they keep losing paperwork sent by my neuropsychiatrist that details why I need to switch physicians. I don’t know what other practices are in the area, but it’s time to check. I need to sit and write a complete history of my time under the care of this physician. I lost a year of my life and gained “many new” brain lesions under his lack of care; he made “using a wheelchair” gestures to chastise me… for not receiving care that his practice withheld. Most recently, I made the choice to not go through the Gilenya all-day First Dose Study because, after having gone a year without treatment, I was still not receiving a time or place to do it. I just started taking them on my own and, good news!, nothing bad happened. I have been my own physician for longer than any layperson should, and many of the physicians I have trusted with my care have fallen farther than short.

Don’t get me wrong — The Wahls Protocol is still remarkable, and the changes are still epic in my book. A warm day this week, however, was a polite tap on the shoulder from my nervous system after which it took an entire evening to recover. A sudden loss of motor skills and cognitive slowing almost seemed foreign (almost). Summer reminds me that it is no chump and can still best me.

But end of rope reached (before anything really bad happens!? Go on, girl!) and I need to look into finding physicians.

In the meantime, there’s laundry to fold, dinner to make, and a house to clean. Maybe before I even do those things, I need a full-on GRATITUDE ADJUSTMENT:

I am grateful that my health is, in many ways, better than it’s ever been.

I am grateful that I feel like I can have a productive day.

Back center in the red wig: I was going to marry that musician.

Back center in the red wig: I was going to marry that musician.

I am grateful for my incredibly talented wife; I get to be privy to her private home rehearsals as she gets progressively more amazing as The Witch in a stage version of Sondheim’s Into the Woods. (I fell in love with her after the first time I saw her on stage several years ago. But I didn’t say anything to her then because she just looked… so above me, y’know? Without costume, I didn’t realize the waitress I seemed to hit it off with was the same siren that left my knees weak months earlier.)

I am grateful for kale chips.

I am grateful for a fridge full of produce.

I am grateful, now that summer is here, for Sheex®  on the bed.

I am grateful that my mom is recovering from her second knee replacement, and even more grateful that my dad is there as caretaker/cook/landscaper/houseboy. 🙂

I am grateful that #MindsOnMain wass successful enough to become an annual event!

I am grateful to have had the time to begin creating book covers!

11020769_10206485101228382_3872190026647930666_nI am grateful for great new housecleaning music

I am grateful for Cowboy, despite his new aged persona named “Lord Grumblebark” who appears only when Cat has been out of the house too long (after-work rehearsals) to release a litany of arbitrarily-timed woofs from the very pillow on which she will hopefully soon again lay her head.

#MindsOnMain

Now that's a #MindsOnMain PARADE! #video

A post shared by NAMI Mid-Carolina (@namimidcarolina) on

I am both beside myself and humble (those two things are possible in tandem, right?) to have been a part of this event. Cat came with me and we joined the hundreds of other people who came on a parade down Main Street in Columbia, SC. The weather was beautiful and kind, and I made it to the end with minimal loss of coherent speech (which resolved after a short sit in the shade). Please enjoy a few errant photographs I took, and feel free to view many more at NAMI Mid-Carolina’s Facebook Page.

We were somewhere in the middle of the parade route as it lined up to start.

We were somewhere in the middle of the parade route as it lined up to start.

The parade ended just a couple of blocks from the state house.

The parade ended just a couple of blocks from the state house.

Mayor Steve Benjamin met us at the end of the route.

Mayor Steve Benjamin met us at the end of the route.

The street was flush with local vendors selling food and art, so of course there was face painting for the kids!

The street was flush with local vendors selling food and art, so of course there was face painting for the kids!

1472085_10206401971990203_7684935774769445181_nThere was also a live DJ and all the street dancing you never thought you’d do during the day in a busy city. And not only did I get a t-shirt with the logo I designed printed on it, but so did at least a hundred other people.

This event’s aim — to celebrate the understanding of mental illness instead of fearing it in the dark — is near to my heart. Your brain is a part of your body and needs health like every other piece of you.

Living with multiple sclerosis effects your brain in ways many clinicians don’t completely understand, but there is assistance available. Contact your local chapter of NAMI if you or a loved one needs help.

Habits and Hashbrowns

Proof that, because I am not a monster, sometimes I go to Waffle House.

Proof that, because I am not a monster, sometimes I go to Waffle House. (Photo by wife)

I’m glad that my good habits are really sinking in. I use the active verb tense of “sink” instead of “sunk” here because I am still a normal human person who needs dinner sometimes when it’s late and everything is closed except Waffle House. I’m reflective of science’s miraculous abundance, yes, but have you tried the new hashbrown bowls there?

The carbs are unacceptable, yes. Having dinner after 10pm is a bonehead move for glucose intolerance. But a grilled chicken breast isn’t bad for you and Waffle House (mine, at least) has never given me any gluten-esque responses as long as I don’t order bread (or waffles, for shame).

But please, don’t fret over this greasy indiscretion! Today I’ve already eaten 2.5c of kale, 1.5c of broccoli, and dinner is simmering: a cabbage-based stew. A coconut milk/blueberry smoothie is also on today’s menu. This is the habit I’m in now, and I like it, but practice makes perfect: we don’t live with financial resources generous enough to to get it right every day. This is kinda how the last 6 months have played out:

Hiking is so pretty!

STEP 5: Hiking is so pretty!

STEP 1: Give up gluten. After two months, give up your cane and Rx for walking. Walk more because you can.

STEP 2: Learn that the phrase “gluten free” does not grant allowance on the unhealthy things that happen to be gluten free. (Talking to you, gluten free pasta)

STEP 3: Just eat kale every day. As much as you can. In fact, eat as many vegetables as possible. Put broccoli, cabbage, kale, spinach, and cauliflower on every grocery list (really, do that — you’re not guaranteed all of their presences at the supermarket). Keep a gallon of blueberries in the freezer. Append this list with other produce on a regular basis, and think of new and creative ways to prepare it so you don’t get mouthbored.

STEP 4: Aw, sugar, I will miss you most of all… except for the fact that cutting you almost entirely out (re: not perfect) has cut my every-day panic attacks by over 50%.

STEP 5: Be active because you suddenly can be.

STEP 6: Keep reinforcing the good habits even when bad ones want to sneak in. Because they will, and nobody’s perfect. In fact, trying to be “perfect” is usually going to set you back.

I am pumped for well-being! I am terrified of the impending summer heat! I still can’t actually run for some reason, but I haven’t gone numb from the waist down while walking for about four months. Even in cooler weather I still lose some control of the muscles in my mouth/esophagus after a small distance. By the end of a walk or hike I am slurring my words like a college kid on spring break. Maybe one day I’ll take a video of that since we live in the future ‘n all. Erstwhile, I still have more to be thankful for than which I have to gripe. Time now to sweep and mop the kitchen: now with an ample amount of increased succcess!

The Learning Pendulum

~1m walked, a dozen posters hung

~1m walked, a dozen posters hung

Yesterday while driving across town from a street on which I’d just walked the length to drop off posters, a heavy ball settled in my gut as though its motion, otherwise subtle in its propulsion, suddenly became evident by an unexpected rest. Everything felt right. I had just spent the day walking boldly through sunny shopping centers with a small stack of posters under my arm, smiling with genuine cheerfulness, talking to strangers without anything embarrassing coming to pass, and, now, driving a car safely and well.

In last night’s Adaptive Yoga class, I got to assist again. I felt strong and capable and nearly left in tears because of that. I can’t find a way to accurately, but not awkwardly, convey how much this class means to me

The day before, I’d spoken with a new Functional Medicine practicioner at length about how to continue these positive changes. I’ve done pretty dang good for myself as an MS patient coming into the sunlit side of neurological crisis without having had any doctor’s care in a year. I feel like my cognition is finally getting back to its baseline (although, let’s be honest, it’s fundamentally impossible to know everything I now leave behind). I then also made dinner, did the dishes, some laundry, and spent 20 minutes in the front yard on some simple labor that resulted in ZERO new injuries.

duchamp4Everything good that happens to me right now feels like a record-skipping visit from Santa that keeps happening. I feel hope in getting — being — better. Science is easy to understand again and I am excited instead of fearful to keep learning. This is the pendulum of things swinging, and I am smart enough to again see that; I am smart enough to know that everything could still be lost to me in a moment and that the pendulum’s nature is always in the reverse of itself.

Until whatever circumstance reveals a return, however, I can focus on the problems that do remain while I can also be lucky enough to help other people (what’s the point of getting yourself better without paying it forward? If the airplane is crashing and you put your air mask on first, the very next step is to help others put theirs on as well.)

Maybe I’ll write that coffee table book on local public restrooms (I have seen and judged them all).

State of The Function

Kale-for-Alzheimers-dietThe more strictly I follow the Wahls Protocol, the more I can feel improvement slowly fading back into normalcy with nearly the same quiet apology with which it left (sorry to leave the party so early, yet chagrined to return without a bottle of wine for the host). It’s been over three months now that I haven’t needed a cane, my fatigue levels have stabilized, and my cognition feels more trustworthy.

I had a cold this week. The ease of dealing with it broke me into tiny peals of laughter more than once. Of course it was a pain in the bottom and I felt bad. I stayed in bed one day. Every moment of this situation passed under rapt scientific awareness — specifically, how different it felt to stay in bed with a cold as opposed to staying in bed because of MS. Of course my entire body was tired… but I could still move any part of it I liked. I sneezed a lot and am sporting one of those red noses dusted with a snow of dead skin to prove my victory over this tiny trial; I took 50mg of zinc and was better by the morning.

And as if to overshadow that tiny joy with terrible reminders so as not to yet take newfound health to heart (and thereby, for granted):

  • Remember that your bladder’s not paying any attention to dietary changes
  • Neither is the spinal degeneration
  • My eyeballs still hurt almost all the time
  • Swallowing is still a thing
  • The Pseudobulbar Affect and thundering anxiety cause too many problems

…But, hey, remember too:

After over a year of terrible care from my neurologist resulted in significant cognitive and physical disability (dude, that speech impediment was completely terrifying and I am endlessly grateful it hasn’t stuck around) I finally got that appointment with a neuropsychiatrist (it only took a year). It was a huge relief to talk to someone, knowing they were schooled in exactly how lesions on the brain can manifest, about the emotional side effects of MS.

(I am honored to have designed this logo for the event)

(I am honored to have designed this logo for the event)

There have been so many more reasons to feel grateful than maligned; sure, there’s still bad stuff… But right now I can walk without a cane (not since 2010!) and without going numb from the waist down (not since 2005!). For those and other reasons, I’m going to join the parade for the upcoming #MindsOnMain event in Columbia. Please consider helping me raise money for the National Alliance on Mental Illness Mid-Carolina chapter by clicking here or on the image to your left — all donations go directly to funding programs and services that help the 1 in 4 adults who are living with a mental illness. Mental illness is a common attachment to MS, either by way of lesions (Pseudobulbar affect, holla!), by being terrible to you, or to your loved ones.

#MentalHealthMatters because the brain is a part of you, and you are a part of everyone else.