Ke(y)to Happiness?

Posted in Multiple Sclerosis, Paleo Diet, Science, Seizure Disorder by Rae

The other day, I made a comparison chart for 7 diets that I had considered trying or had actually tried in an effort to improve my MS. It ended up getting featured on Modern Day MS, which is pretty cool.

I am almost certain that the diet that I need to be on is the traditional ketogenic diet. It’s ostensibly the best diet for overcoming NAFLD (Non-Alcoholic Fatty Liver Disease). This graphic outlines 7 ways that being in ketosis can help you, and I need help with all seven things!

Unfortunately, despite my logical brain knowing that this is a good idea, the most of me is absolutely dreading this shift. I will miss the convenience of restaurant food and delivery very much. I will miss comfort foods. I will miss the quiet calm of not having to justify my nutritional choices to others or to myself. (Because, let’s be real, the constant chatter and fretting of Anxiety will happen no matter what, and it’ll do its damnedest to make me question myself every bite along the way.)

I think one of the hardest things about changing my way of eating at the moment is the fact that I have a precocious three-year-old who survives primarily on Goldfish crackers, peanut butter Ritz Bits, chicken nuggets, French fries, and various fruits. Honestly, reading that, I feel Shame. (“Big S” shame. Toxic shit.) Of course, like anyone seriously considering this diet, I watched The Magic Pill on Netflix, and felt like a terrible parent.

My boy is 39 inches tall and nearly 40 lb. I don’t know that changing his diet is the right thing to do – but, I do know that I will absentmindedly snack on Chex Mix if I’m serving it to him. If I’m genuinely convinced by the science surrounding the ketogenic diet — about it being the optimal way for humans to eat — why would I continue to feed my child a diet that is likely to set him up for type 2 diabetes in the future?

My little ham.

Why am I so filled with anxiety over justifying these nutritional choices even to myself? Do I just like sugar that much? And, why is it so damn hard for me to just be part of normal society? Isn’t it enough that I’ve got a majillion chronic illnesses? Do I need more social isolation? Do I really have to make my life even more difficult?

And will it just make life more difficult, or will it actually work?

If it works, it could make things so much better for us. I want to be able to imagine a future free from complications of NAFLD, hypertension, high cholesterol, and depression and anxiety. I’m honestly a little giddy over the thought of raising my seizure threshold. If I actually believe the science regarding how my physical health should improve, then it’s absolutely worth it…

Unfortunately, I have doubts. And it’s reasonable that I have doubts! Scientists sometimes lie for money. I did everything I was told by my doctors regarding diet for most of my life, which meant eating lots of low-fat, high complex carb food, which has, in part, led to the health that I am currently experiencing.

I feel so hopeless and depressed. Living in a post-fact society, I have no idea who is trustworthy. I want to feel empowered and excited. I want to inspire you to come of a journey of health and rebirth with me, knowing that the outcome will be stellar and worth the emotional investment.

The truth, however, is that I’m having a really hard time even being motivated right now, and so I’m looking for as many credible studies as I can find. Like these… and these… and this. It’s easy to find pieces challenging it.

My therapist isn’t much help with my depression these days. She says I have all the tools in my tool box. It’s all up to me. Well, either it’s all up to me to take the best possible actions or it’s time to find a new therapist, which may also be one of those positive actions, depending on whether or not I’m able to continue to hold myself together. To be totally honest, the idea that I could have “beaten” my mental illnesses sort of cracks me up when I legit had to do EMDR butterfly hugs just this morning.

Still, I know meditation and my actions are only part of the equation. Major depression is a biological disease affected by MS and caused by brain inflammation. Oh, and btw, “[p]eople with depression who [experience] suicidal thoughts … exhibit significantly higher levels of TSPO, … indicating inflammation of the brain.” [source] I’ve only visited that thought pattern a few billion times.

But, guys — guess what is decreased when you’re on a ketogenic diet? Brain inflammation. [source]

So, I will start this diet on Memorial Day whether I feel like it or not.

I am ready to feel better. I want to be happier and lighter-hearted and thinner and to live longer for my boy. I’m just not looking forward to the hard part.

I’m glad to be reading Barbara Applebaum’s book Be Your Own Superhero. It’s really helping me with motivation right now.

—

Also in a positive direction, I have logged out of Facebook in Chrome on my telephone, and I will not log back in. So, now I not only do not have the app, but I have to actively log in on Chrome or open up my laptop if I want to immerse myself in other people’s opinions, problems, and other random bullshit.

I decided I’m tired of putting myself in harm’s way, and with the knowledge that real life is triggering my PTSD on its own, (Thanks, Dominionists!) I don’t need to poke the bear. I want to use my time better.

So, I’m using that time to craft a month-long meal plan with recipes. I’ll have a plan for ~1400 calories/day for me and one for whatever Adam’s ideal calorie count happens to be. I’m guessing ~1800.

Let me know if you want to do it with us.

8Jan2018

Challenges.

Posted in Paleo Diet, Seizure Disorder by Rae

Earlier this week, a new friend challenged me, since I hadn’t yet really gotten into the Wahls Protocol, to go ahead and try AIP first for 90 days.

I said that I could do anything for 90 days in the interest of not having seizures… but to be honest, I’m not sure that I can. I mean, I can’t even get myself to eat 9 cups of veggies a day… and that’s on days when I can make good food decisions for myself.

Physical

Yesterday and today have been difficult for me, health-wise. Bunches of seizures. (Like, so many I lost count.) Many ended in post-ictal confusion “time travel.” Lots of gastric pain. I even fasted for 24 hours because of the pain… It even hurt to drink water.

But you know what made the pain stop enough for me to be able to eat and return to being a mostly-productive member of this family today? Cannabis. To be more thorough, it was a high CBD edible. Specifically, 2.5 mg of CBD and 1.25 of THC — or an 8th of a piece of 1 Strawberry Peach sour gummy.

Or, if you’re ignoring the medicine in it, and are only thinking about diet… an 8th of a piece of gummy candy that definitely contains sugar and probably contains artificial flavors and coloring. *sigh* Heck, there’s even a sign at the dispensary making sure everyone’s aware that edibles are not being created in a sterile environment and that anyone with allergies is advised to forgo them.

So, I find myself wondering if that small amount of verboten food, (truly, about a cubic centimeter of candy that may have come into contact with gluten, dairy, etc.) taken almost daily, would make the rest of the diet, well, pointless.

If it were for weight loss alone, I would know that such a small indulgence wouldn’t matter in the long-term — but when the dietary objective is to decrease inflammation and improve symptoms, I’m not so sure. Then there’s always the questions — “Is the CBD more anti-inflammatory than the sugar is inflammatory? And “How long do the effects last? Is sugar inflammatory for a half hour and CBD anti-inflammatory for 4 hours?” It’s really hard to science that shit when you have degrees in music and law and know diddly squat about chemistry.

And then there’s the whole “family planning” thing. Obviously, I’m not going to start trying to conceive while I’m still waiting for results from the hematologist and CT scan, but if I’m all clear in those areas, it’s time to make another Majka… and the last time I gave up paleo and cannabis was when I was in my first trimester with Henry, and the doctor stressed the importance of eating a “balanced” diet, including grains and dairy, and he dropped a whole bunch of pamphlets on me.

I honestly don’t know what the fuck to do. It’s not the optimal time to make any decision at all, when I’m hurting, anyway… certainly not the time to thoughtfully consider something that will change the way I deal with life a minimum of 3 times per day.

Mental/Emotional

For anyone who is curious about the psychological gems that I mined for in the dungeon of yesterday’s seizures, I got to spend a surprisingly long amount of time yesterday (almost 15 minutes!) as my 2008 self.

She was absolutely furious with my lack of career, lack of discipline, and 50 lb weight gain. She cannot believe that I’m not only living in IL of all places (There’s fucking snow here! UGH.), but that I refuse to take the IL bar. (She accused me of being lazy! It’s only a 2 day test!)

2008 Rae believed I gave up on life, and that I am now pathetic and worthless and deserving of contempt. But, hey, at least my kid’s cute, and Adam’s still hot.

She was waaayyyyy more of an uncompromising cunt to me than I realized while I was going through the process of being her. She was proud of herself for standing up immediately and continuing to study for the bar exam after she had drop seizures. She thought it was proof that she was tough and “has what it takes.”

But then again, that was before almost a decade of therapy. Before self-compassion was even a term that I’d heard. Before EMDR. Before marrying Adam. Before becoming a mother. Before redefining what “success” means to me.

My favorite incorrect insult from her was when she accused me of being a boring, suburban housewife with nothing to add to society. If I ever needed something else to rage against, it’s that.

God forbid I be boring.

*jazz hands*

5Nov2017

Wahls Adventure: Prologue

Posted in Multiple Sclerosis, Paleo Diet, Seizure Disorder by Rae

It’s been a tough weekend so far.

Yesterday, out of nowhere, I started feeling like there was a ton of heat coming off my solar plexus, and then it shot through my body like I was on fire all over. I could barely breathe (like, I was gasping for air), and in that moment, according to Adam (because I legit do not remember), I had something akin to a grand-mal seizure in the car, hitting the dash and tearing at my clothes before passing out.

I don’t remember getting home. In fact, I don’t remember much of yesterday, aside from being really frustrated when I opened my vape cartridges that Adam so thoughtfully picked up from the dispensary for me, and they were both unusable. So, tomorrow, we have to take them back and get them exchanged.

I remember that we were on the way to the Orland Park indoor neighborhood garage sale, and I’m still pissed that my body made me miss that. Next year, I guess!

Anyway, the panic attacks and seizures didn’t stop in the morning, or even after I slept. We’ve started keeping a log of my blood pressure, which is kind of all over the place, considering that I am on a high dose of Labetalol. Today, I keep feeling like Blanka… electric all over, and like even soft touches are too much for me.

This motherfucker gets me.

Pictured: Blanka from Street Fighter during his “Giant Bomb” attack – electricity coming off of every part of his body

I think I know what may have precipitated the attack, but it’s not the only variable in play. The day before yesterday, I was sick with stomach flu (fever and all), and I drank 64 oz of Gatorade, followed by a ton of Halloween candy. The intensity of pain and large number of seizures that occurred within 24 hours made the correlation of sugar consumption to discomfort too obvious to ignore anymore.

So, I finally decided that reading other people’s blogs while hemming and hawing about whether or not I’m willing to go paleo again was insufficient, and I purchased my copy of The Wahls Protocol.

The Wahls Protocol is very different than any other diet I’ve tried before because it has 3 steps to it — basically 3 discrete diets that increase in difficulty to adherence.

Step One: The Wahls Diet (or “What Rachael is going to be starting this week.”)

No gluten, eggs, dairy (except for ghee), refined oils, or processed foods.
Sugar is limited to that which occurs naturally.
6-9 cups of vegetables daily (3 cups of leafy greens, 3 cups of sulfur-rich vegetables (cabbage, broccoli, cauliflower, etc) and 3 cups of deeply colored vegetables and fruits, such as berries, carrots, winter squash, beets, etc).

Everything should ideally be organic, grass-fed or wild-caught foods, if your budget allows. Mine does not.

This is very close to the paleo diet, but it allows for non-glutenous grains like corn, oatmeal, and rice. Y’all know I can hang with the traditional paleo diet, but that’s “step 2,” and considering the point of the diet is to maximize the nutritional content of what you’re eating so that you can power up your mitochondria (and hence your whole body), as long as I’m getting the veggies in, while limiting sugar, I think I’m making positive headway.

Honestly, I’ve been through all the tests, and I don’t have Celiac Disease or any allergic reaction to wheat, so the only reason that I’m avoiding it is because it helps force me to find a way to put a vegetable in place of whatever bread product my brain immediately jumps to. So, fortunately, I don’t need to be afraid of cross-contamination like many folks do.

In the past, I think the biggest barrier to sustained compliance on the paleo diet for me has been the All-Or-Nothing mindset. To help ensure that I actually get this done, the only thing I’m going all-or-nothing for is eating the cups of veggies.

I’m trying really hard to shift my mindset from “This is gonna suck.” to “This will help me feel better and is totally worth it.” So far, it sounds like, “This is gonna suck until it helps me feel better.” 🙂

Ah, honesty. You’re almost optimism.

If I eat inflammatory foods, I’m literally feeding and empowering my disease.
If I eat the required vegetables and avoid foods that are known to cause inflammation, I’m feeding and empowering my mind and body.

When I think about it that way, choosing any other course of action seems beyond stupid.

Thus, once I’m done with this entry, I’ll be doing some meal planning… because I’m certain I won’t get Henry on board for green smoothie breakfasts and salads at lunch, but I’m pretty sure I can figure out meals for him that use at least some of the ingredients. (I mean, really, that’s definitely part of what makes me shy away from the level 3 ketogenic diet. I’m not sure how I’d do without bananas in my life.)

Adam is totally on board to power up his mitochondria with me. I really lucked out in the supportive husband department. But he’s also been watching Henry for several hours now while I read and then wrote this. So, I should probably quit blogging and go spend time with them before making the grocery list.

Hope you’re having a good weekend!

Have you tried the Wahls Diet? Do you have any favorite recipes that happen to contain a fuckton of veggies? Let me know in the comments or email me with suggestions!

10Oct2017

The Things We Cannot See

Posted in Just Life., Multiple Sclerosis, Paleo Diet, Science, Uncategorized by Rae

It’s been a while since I gave myself license to sit down and write. It’s easy right now because I’m sick with laryngitis, and my mother-in-law has Henry. After the miscarriage (which took an inordinate amount of time to resolve), I ended up having an MS relapse. Immediately following the 6 days of oral steroids, I am now sick… so, it’s been a challenge to get basic things done, let alone to opine on the finer points of life. That being said, today is World Mental Health Day, and I write extensively about my mental health, so it seemed like a good time to give everyone an update.

The Banal

Recently, I’ve been taking a second look at the Wahls Protocol. It’s a diet plan that Dr. Terry Wahls used to help her decrease the negative symptoms of MS. Obviously, long-time friends and readers know that I tried the paleo diet to improve my MS symptoms and found very little relief from seizures, but some relief from fatigue. Unfortunately, the number of dishes I created by following the diet used up any extra energy.

In the last month, scientists have discovered the brain’s lymphatic system. This might not seem like a big deal at first, seeing as how the rest of the body has a lymphatic system, but for those of us with MS, it’s huge. Essentially, this is not just proof of the immune system interacting directly with the brain, it’s the hardware in our bodies that make it possible. It’s literally part of our immune system, and it’s integrated throughout the entire brain… and until just now doctors didn’t even know it was there.

For those of us who have experienced the terrible side effects of MS disease modifying drugs, it’s galling. There’s something terribly unnerving about reading that “The discovery of the central-nervous-system lymphatic system may call for a reassessment of basic assumptions in neuroimmunology.” Essentially, it means that we’ve all been sold insanely expensive, and potentially harmful, snake oil. It reminds me of how “bleeding” patients with leeches to “balance the humours” used to be a real thing, which is kind of scary if you think about it.

The first mystery these scientists need to solve is how those vessels receive and dispel fluid, anyway. They already suspect that the flow of glymphatic fluid (That’s the fluid that goes in and out of the lymphatic system within the brain.) may affect folks with Alzheimer’s or other neurological diseases that disrupt sleep… like MS!

The article states that “The flow of glymphatic fluid can change based on a person’s intake of omega-3 fatty acids…” And that means that aside from the brain-gut connection, we can find evidence to improve our neurological health by eating well here, too.

I already take 750 mg of Mega Red Krill Oil every day for Omega 3 supplementation. It’s been helpful for lowering my triglycerides, and I believe that its use in conjunction with Vitamin D3 has been more helpful as an antidepressant for me than Effexor or Cymbalta ever were.

So, I’m looking in to Dr. Wahls’s research and am about to start Phase 1, which is simply adding 9 cups of vegetables a day (3 cups of dark, leafy greens, 3 cups of sulpherous, and 3 colorful.) to your diet.

Whether or not I will move forward to Phase 2 (which includes going on the paleo diet again — but this time using the autoimmune protocol), is yet to be determined. I think that it might be too difficult to try to keep paleo/keto with a 2 yr old in the house who basically subsists on Peanut Butter Ritz Bitz, Goldfish, and cookies. (Don’t worry. I offer plenty of fresh fruits and veg too.)

So, for now, I’m more interested in feeding my mitochondria the nutrients they need to produce energy than I am interested in reducing inflammation in my body by avoiding foods that I may (or may not) have reactions to.

The Sublime

With all of that setting the stage — I have to let you know that it has made me think about the bigger picture.

Back when I was living in California, I got the chance to take a walk and chat with Reichart Von Wolfshield — a notable scientist, and a pretty cool guy to hang out with. During our walk, we shot the shit about atheism vs. being a believer in a higher power. I was very well aware of his staunch atheism, and he was curious as to why I am a devout believer in God.

He wanted to know why, with a lack of evidence, I am so sure that God exists. My personal take is that everything is God — the whole universe and anything beyond — everyone and everything is a part of this higher power, which is part of why we don’t necessarily notice it. It’s too big to comprehend, and it very likely lacks the sort of sentient thought that we would like to attribute to anything that is omnipotent and omnipresent.

My actual response to him that day, however, was that I know that people are very limited creatures — that we can only see part of the visual spectrum and hear part of the auditory spectrum, and that I simply believe that since the concept of God has existed alongside all of humanity, it must have basis in reality, even if we cannot substantiate it yet with science.

The discovery of the lymphatic system in the brain reminds me why I believe in God’s existence — not because it makes me more hopeful for a cure for my ailment (thought it certainly does), but because 2 months ago, we didn’t believe it existed, even though it did, and even though, more than likely, it was present for of all of humanity leading up to now.

I genuinely wonder what we’ll “discover” tomorrow.

30May2017

Giving Integrated Medicine A Shot

Posted in Multiple Sclerosis, Paleo Diet, Uncategorized by Rae

Tonight, I’m seeing a doctor that specializes in integrated medicine. She’s a medical doctor, a chiropractor, and she studied Chinese traditional medicine (acupuncture/acupressure/herbs) too. She thinks she can help me get my current comorbidity status to look a little less fucking scary before trying in earnest for a new party member.

For anyone who hasn’t been playing along for several years, I’m looking at MS, seizure disorder, hypertension, high cholesterol, obesity, GERD, NAFLD, PTSD, and depression. Oh, and my immunoglobulin is crazy low, but that doesn’t have a name yet… Anyway, I’m trying to avoid type 2 diabetes, lose weight, improve fatigue, and, you know, just generally not die early from lack of exercise, shit nutrition, etc.

They took almost a full pint of blood for the majillion (okay 8 or 9) tests she had me get on Saturday. On the one hand, I’m excited by the thought that someone might actually help me figure out my health puzzle in a way other than just adding more pharmaceuticals to the mix. Feeling better would be awesome, but my pessimistic mind won’t let me believe it’s something that could actually happen.

(I’m actually kind of afraid of how harshly I know my inner critic would judge my present life if I suddenly had more energy. I know that it does shit like that because when I stopped having nearly constant seizures after coming off of Cymbalta and Abilify for a video EEG in 2014, I became suicidal because I believed I had been doing literally nothing but seizing and watching TV for about 4 years. That was an erroneous belief, BTW. I wrote the Tao of Rae and created the Paleo Compendium during that time, and that harsh critic is part of depression. Depression is a motherfuckin’ liar 98% the time.)

On the other hand, I’m really not looking forward to whatever crazy, pain-in-the-ass diet I absolutely know she’s about to put me on. If I were a betting lady, I foresee a recommendation of AIP or Wahls Way… because before she sent me for the tests, she said, “You know, most of your ailments can be traced back to gut health.” *GROAN*

Either diet makes me want to weep because my son’s diet is at least 50% Ritz bitz or cookie bars of some sort — which mean that my diet, for the last year or so, has increasingly become that of “whatever Henry has left over.” This means major changes for my family. I’m not looking forward to them… but I am hopeful. And, on the bright side, I’ve got a decent resource already ready for myself.

I’m not entirely sure how I’m going to deal with Henry’s diet in conjunction. I know that I can avoid eating Ritz Bitz, but I’ve also been reading up some on Paleo Mom‘s website, and I’m feeling allllll kindsa guilt over the fact that apples and bananas are pretty well all that my toddler wants to eat in the “fresh fruits and veggies” department. Hell, half the reason that I feed him the Plum Mighty Snack Bars is because they’ve got hidden veggies in them and all kinds of vitamins and minerals.

I’m just fucking exhausted most of the time, and that’s no way to live. I just don’t know where the energy to clean out chamutz from my house and start exercising more is going to come from. I can barely keep up as it is.

And that’s why we finally got a Care.com account and are looking for a mother’s helper for a few hours a week… but interviewing candidates is another layer of awesome stress, coated in PTSD grossness.

Anyway, Henry woke up early from his nap, so I need to go do things in the other room with him. How could I stay away from this face?

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30Dec2014

A Decemberween Miracle!

Posted in Just Life., Multiple Sclerosis, Paleo Diet, Science by Rae

Woah, posting twice in a week?! IT’S A DECEMBERWEEN MIRACLE!!! Since my last post, I’ve done a lot of reading, talking to family and friends, and thinking about things, and I figured it’s a good idea to update.

Stem Cell Things

So, first thing’s first – stem cell transplants are making a splash in the MS community. CBS published an article discussing the positive effects of stem cell transplants for those of us with MS.

“In a small clinical trial [currently in year 3 of 5], patients experienced long-term disease remission after undergoing a transplant of their own hematopoietic stem cells.” …

“The researchers found that nearly 79 percent of the patients who underwent the procedure sustained full neurologic function for the three years following the treatment and symptoms of their disease did not progress. Additionally, patients in that time period did not develop any new lesions related to their disease.

More than 90 percent of patients did not experience disease progression, while 86 percent did not have any periods of relapse. Though a small number of patients did have side effects from the immunosuppressive drugs, they were no different than the side effects typically experienced by MS patients taking the drugs who haven’t undergone stem cell therapy.”

While I think this new research is awesome, I’m curious about what the control group looked like, and whether they were on a DMD. RRMS is a tricky sonofabitch because it’s different in every patient and we still don’t know what causes relapses!

It did, however make me think pretty hard about the cord blood banking issue, because these folks used their own adult stem cells, which makes me think that banking the cord blood might not really be necessary.

Private umbilical cord blood banking is crazy expensive. Even the least expensive option, ViaCord, is ~$1500 with a recurring fee for storage. At first, I thought, “Wow, we have to do this for our kid’s wellbeing!” …but then I started getting stuff in the mail, a ton of spam email, and pamphlets every time that I went shopping for maternity clothes. More and more, it started looking like it might be a scam. So, I did the research — and the truth of the matter is that it’s an extremely expensive insurance policy.

“[A]ccording to most experts, the odds that a child will ever use his or her own stored cord blood are small. According to a 2005 editorial in the journal Obstetrics and Gynecology, the chances are about one in 2,700.

Other estimates range widely. Advertising from one private cord blood bank puts the odds at 1 in 27. The American Academy of Pediatrics suggests it’s more like 1 in 200,000. Indisputably, there are very few documented cases of a child receiving his or her own banked cord blood as treatment. The Institute of Medicine says that there may only have been as few as 14 total of these procedures ever performed.” —WebMD

So, after a lot of thought, talking with my husband and family, I’ve decided to find out what stem cell bank the University of Chicago Medical Center works with most closely, and to donate the cord blood to them.

If, in the future, the kiddo or I need stem cells, that’s what those public banks are for! I see no reason to hoard potentially life-saving cells when there’s a better chance of winning big on a lottery scratcher than our kid needing those stem cells.

Cloth Diapering MADNESS!!!!

For the last several days, I’ve been learning about cloth diapering. Or, now that I’m in-the-know and part of the cool kids’ club, I suppose I should call it FLUFF.

At first, I was really overwhelmed at the sheer amount of information needed. I naievely thought there were 2 options – disposables and cloth diapers. NOPE. There are disposables… and then there are NINE different types of cloth diapers. NINE! (flats, prefolds, fitteds, contours, hybrids, pockets, sleeves, all in ones, and all in twos!) I’d be lying if I said I didn’t still feel a little bit overwhelmed with choices.

Truthfully, I’ve had moments over the last couple of days where I’ve thought that it’d be worth it to use disposables if for no other reason than it meant that I wouldn’t have to keep learning about diapers. But then I realized that thinking that way was not helpful. It was the first time I had to tell myself, “Don’t be a lazy parent.” It probably won’t be the last.

From everything I’m reading, it looks like these 3 choices are likely the way we’ll go – either prefolds w/ a cover, pocket diapers, or all-in-twos. I like the snap feature of the all-in-twos, but I’m gonna have to see about the washing routine with each of them before I make up my mind. And even then, if I make up my mind, there’s no telling whether or not it’ll be the best fit once the baby comes along.

Sure, cloth diapering is more economical in the long run, and it’s better for your kid’s skin and the environment. But let’s be real here… it’s all about fashion. Disposables have nothin’ on these.

Food-type Things

It’s getting towards the new year, which for most folks means New Year’s Resolutions. What’s the #1 resolution? GET FIT & LOSE WEIGHT!

Fortunately for me, being pregnant means I don’t need to worry about losing weight this year. Of course, that doesn’t mean that I can’t improve my diet. Today, my good friend Annie asked if I wanted to join her for a 30 Day Green Smoothie Challenge, and I agreed. I’ve gotta find a way to get all my veggies in! The kiddo seems to only want me to eat pizza, pickles, and ice cream. Not the healthiest! At least he’s not causing the same cravings that I did to my mother… which would be eating scrambled eggs on top of pizza! Then again, it’s only week 22, starting tomorrow. There’s all sorts of time for crazy cravings! 🙂

I’ve read about women who are able to continue the paleo diet while they’re pregnant, and I have to say, my hat’s off to them! I’ve been surviving on greek yogurt, whole wheat bagels, carrots w/ french onion dip, french fries, cheese bread (pizza), burgers, macaroni & cheese, and ice cream. I can’t seem to get enough dairy. It’s so unusual for me, so I’ll be grateful to get smoothies back into the rotation.

Speaking of food… dinner should be here any minute, so I’m gonna log off for now. Hope you’re all having a good day! ❤

17Jul2014

Fitness & MS… My Complicated Relationship

Posted in Just Life., Multiple Sclerosis, Paleo Diet, Seizure Disorder by Rae

In the 3 years prior to my MS diagnosis, I lost 70 pounds. I didn’t count calories. I wasn’t on any particular diet. I was single, and had decided that when I had nothing else to do (work, school, chores, or hanging with friends) that I would spend my time at the gym, doing whatever class was available or swimming. It kept me from feeling sorry for myself — especially when I was living with my grandfather right after the divorce.

When I was diagnosed in 2007, I was at my absolute healthiest. I even was in a great relationship with the guy who became my husband. I worked out at least every other day, and I was at my lowest weight since freshman year of high school, when I marched for about 3 hours a day, 4 days a week with a 30 pound bass drum. I was a mere 5 pounds away from a “healthy” BMI.

The diagnosis didn’t stop me from working out… but about a year later, seizures most certainly did. I was afraid of falling off the cardio machines. I was afraid of embarrassing myself in yoga class. I was afraid of falling down on a walk. And none of this was baseless fear. I was having hundreds of seizures a day at that point.

This lead to the only logical thing it could lead to: weight gain… and not a little bit either. I managed to gain it *all* back.

The Paleo Diet & Dances with Orthorexia

When one of my good friends found out that I was diagnosed with MS, she suggested that I start following the Paleo Diet. I laughed her off for a couple of years. It seemed like way more work than it was worth, and there was no reputable, repeatable scientific research that suggested that it would actually help me in any way.

Fast-forward to a couple of years after my seizure disorder diagnosis, and I was desperate for a way to lose weight that didn’t involve exercise. I started compiling a cookbook for myself that later became The Paleo Compendium.

My repeated attempts to adhere to the strict diet are well documented on this blog. For a short period of time in 2011, I was successful. But for the most part, it was a challenge that caused me to think about food almost all day, every day. When my therapist mentioned the word, “orthorexia,” I had never heard of it before… but I had many of the symptoms.

I worried constantly about what I was putting in my mouth. I wanted so badly to get better, and all of the propaganda that I was reading said that food was the only answer. Not medication. Not exercise. Just food. I mean, major news networks were reporting that Dr. Wahls “cured” herself with her protocol & the paleo diet. (Nevermind the fact that, in reality, she did not cure herself, but rather significantly decreased the severity of her symptoms.) If I wasn’t following that diet, I must have wanted to deal with the deterioration I was experiencing from MS, right?

I constantly worried that I was causing my MS to be worse by not being strict enough. If I “caved” and ate food at a restaurant or my in-laws’ house, I felt like a horrible person – a failure with no self-control who was causing misery to myself and anyone who cared about me. (My loving, wonderful in-laws are Polish. If there’s not bread, pierogi, or some preparation of potatoes, it’s just not a meal. Saying “no” to their hospitality always made me sad and embarrassed.)

I spent days (not just hours, but actual days at a time) adding recipes to the Compendium. I spent hours every week planning menus and making grocery lists. I started asking Adam if we could go longer between visits to his parents’ house, just so I could avoid looking my mother-in-law in the eye and telling her that I couldn’t eat whatever she’d made. I became increasingly depressed by the fact that even though I was doing everything I could do to control my eating, I was still experiencing MS symptoms. I felt guilty for craving bread, even after I acknowledged that wheat is addictive.

I was so embarrassed about having a “new” eating disorder that I didn’t even tell my husband about it… or anyone else, for that matter. It wasn’t until a friend posted about orthorexia on FB today that I felt that it was important to share my experience with others. It was only today, after several months off of the diet and 3 weeks of working with a FitBit that’s making me crazy in a whole other way, that I felt like I should come out.

The Paleo Diet is especially hard to follow for those of us with MS because of fatigue. So tired you can barely move? Tough. You can’t pick up any convenience foods. Everything you eat has to be made from scratch. Raw fruits and veggies and nitrate-free lunch meats are convenience foods to folks who are on the paleo diet.

“Eating clean” meant putting more effort into making food every day than I used to put into food prep for an entire week, not to mention the avalanche of dishes that it created every day. I would calm myself by telling myself that I was doing what I could do to keep myself as healthy as I could, despite MS. I would tell myself I was doing this for my husband, for my family, for my friends. I was hopeful that I was keeping the really bad stuff at bay.

But then, even though I was eating clean, I had an MS exacerbation where I lost feeling in my hands. It forced me to acknowledge that I cannot control my MS. Not by diet. Not by medication. MS is simply uncontrollable… but orthorexia is not. When I realized that eating paleo wasn’t stopping the MS from doing its worst, I gave it up for good. I’m pretty sure Adam and I wouldn’t have made it through that last exacerbation without Grubhub & Delivery.com.

That’s not to say that nothing good came from the experience, nor is it to say that you shouldn’t follow the paleo diet if you feel it’s right for you. There are many people who have experienced a decrease in symptoms due to its focus on anti-inflammatory foods. I know, at the very least, eating more nutrient dense food helped abate some of my fatigue.

I am happy to say that because of my time trying to follow the diet, I’ve substantially increased my intake of vegetables and still keep my grain consumption much lower than I used to. Fewer sandwiches, more salads. Fewer bagels, more smoothies. Honestly, just yesterday, I picked up a loaf of 100% whole wheat bread and felt deeply guilty…but I enjoyed the sandwich I had for lunch. Baby steps.

Working Out & Pseudoexacerbations

Regardless of diet, exercise is important for people with MS. It helps fight fatigue and depression, keeps your heart healthier, and helps regulate bowel and bladder function. Honestly, there’s no downside to exercising besides being sore the next day. The only problem is that it’s scary.

Why’s it scary? Because it can easily make you feel like crap. Uhthoff’s phenomenon causes MS symptoms to show up temporarily when your body temperature rises by even half a degree for some people… and exercise, well, it raises your body temperature. The good part of Uhthoff’s phenomenon, however, is that once your body temperature gets back to normal, the MS wonkiness stops. Because of this, I’ve decided that it’s well past time that I invest in a cooling vest.

When I looked at the scale in 2012 and saw a number that was higher than I’ve ever seen, I decided that I could no longer afford the “luxury” of being afraid of working out. Since my seizures are entirely caused by MS, this means that I have a disproportionate amount of seizures at the gym.

Fortunately, I’ve stopped worrying about what will happen if I seize while on a machine. I can tell you exactly what will happen because it’s happened so many times I can’t even keep count anymore. Adam will pull me off the machine and I will sit down until I feel better enough to walk to the car, and then I’ll try again the next day.

I’d hoped that I would be able to lose weight as quickly as I did in 2004-2007, especially since I was dieting and exercising, but that just hasn’t been the case. I started back at the gym in 2012, and here in 2014, I’ve only lost about 20 pounds — and 10 of those were in the last month alone.

Curious what changed in the last month or so? I stopped taking all medications other than my blood pressure medication and got a FitBit One.

FitBit Makes Me Crazy, But It’s Effective.

As I mentioned in a previous entry, I received a FitBit One as a part of a study on the effectiveness of activity trackers on improving MS symptoms. So, for the last 3 weeks, I’ve been logging all my foods in MyFitnessPal and all of my activities on Fitbit’s website.

Yesterday, I stepped on the scale, expecting to see no change. FitBit had told me that I was only at a deficit of 637 calories for the week. I was shocked to find that instead, I’d dropped another 4 pounds. FitBit’s calculations had to be wrong. I realized that all of the information it provides is an estimation at best. I have come to the conclusion that the simple act of food and activity journaling is enough to make me mindful to the point that I change my habits to conform as well as I possibly can with my goals. This little device has shown itself to be as helpful for my weight loss journey as meditation has been to my overall well-being.

Because I really want to get back down to the weight I was when I was diagnosed, I’m going to keep using the device even now that the study is over. Even if counting calories makes me feel crazy some days, looking in the mirror and hating what I see consistently makes me sad. At the end of the day, I’d rather be crazy and hopeful than sad and hopeless.

Then again, I fully admit this might be about controlling what I can in a life filled with things I cannot control. *shrug* As long as it gets me to a healthy BMI, and it doesn’t negatively affect my relationships with the people I love, I don’t really care.

23Apr2014

600th Post!

Posted in Just Life., Paleo Diet by Rae

I’ve wanted to make a post for the past several days, but for whatever reason, writing just hasn’t happened. There’s been a lot going on.

First visit with the high-risk pregnancy specialist

Last week, Adam and I saw the high-risk pregnancy doctor, in the hopes that we’d be cleared to start trying for a family. Unfortunately, my blood pressure was insane at the visit. 174/95. Crazy, right? The doc wants me to lose 20 pounds and get my blood pressure under control before I see him again.

Challenge Accepted.

Doubled the hypertension medication. Got back to the gym. Fortunately, the relapse is over, and because of that, seizures aren’t stopping me from exercising. Yesterday, I was finally able to do 45 minutes of cardio again. We also keep saying that we’re going to go paleo again. We did well yesterday, but tonight, we’re going to a Blackhawks playoff game… so I guess we’re aiming for 80/20 this week.

Awesome Find: Once A Month Cooking

One of my friends introduced me to Once A Month Cooking, which has more than 2 years worth of paleo menus and recipes already made. Talk about a time-saver.

And if that weren’t enough, there are other sites for once a month cooking too, such as this Whole 30 Freezer Menu, and this article about how to freezer-cook in the first place.

Big 600!

And apparently, this is my 600th post here. That blows my mind.

Hope you’re all doing well!

14Mar2014

My Future’s In My Hands

Posted in Just Life., Multiple Sclerosis, Paleo Diet, Recipes by Rae

Can you feel me?

This has been one heck of a week. It started on Monday morning when I woke up with absolutely *no* feeling in my hands. That was scary as hell. I could still move them… I just couldn’t feel them. Surprisingly, I could mostly type. Maybe it’s because I have it so hardwired into my muscle memory. I type most of the day 5 days a week.

I repeatedly asked Adam to take me to the emergency room, but he thought we should call the neurologist again (I had called prior to 9 am and again at 10:30 am) and wait to see what he wanted me to do. The answer came around 4 in the afternoon –come in on Tuesday to see him. So, that’s what we did.

Fortunately, when I woke up on Tuesday, I could feel my hands again. They were burning and stinging terribly, but at least they felt like they were *there.* Dr. J took out a safety pin and told me to close my eyes and let him know when I felt something. I didn’t really feel the pin until he was at the upper part of my arm. I felt a little pressure, but certainly no sharpness. I thought he was playing a trick on me or something. I really didn’t feel the pin at all on my hands. Adam, however, has assured me that I got poked repeatedly. This did not sit well with me.

Dr. J asked what I wanted to do. I told him that I’ve always had solu-medrol when I had an acute MS exacerbation, and was immediately told that there’s a national shortage of solu-medrol right now and that he couldn’t give me any without MRI proof that I have new, active lesions. (Maybe I’m being simple, but isn’t suddenly and completely losing feeling in your hands prima facie evidence that you do have new, active lesions in your spine?)

So, instead of putting me on an IV of corticosteroids, he prescribed a second medrol dose pack (I took 1 two weeks ago and it only got rid of the numbness on my left side.) and scheduled MRIs of my brain and spine for 3/21. I then see him on 3/25 to discuss what the MRI showed.

For anyone playing the, “How long has this shit been going on?” game, that means that it will have been 15 days between losing all feeling in my hands and a discussion about what my MRIs show. To me, that seems like a really long time for something as important as use of your hands. Moreover, I will have finished the medrol dose pack on 3/16, which, if it works, would make the new lesions inactive, right? I wish I understood his methods, but I have to trust that an MS Specialist knows more about this disease than I do.

He also was not pleased that this happened only 4 weeks after quitting Gilenya so that we can try to start a family. He said that depending on what we see on the MRI, we’d have to have “a very serious discussion.”

I said, “We haven’t even had the chance to start trying.” I’m not going to choose to not have a family because I had one ill-timed exacerbation. That’s just crazy. I’m guessing he might try to get me to go back on Copaxone, since you can be on it even during pregnancy. I only stopped using Copaxone because he said it wasn’t doing anything for me, but I felt so much better when I was on it, regardless of how much I loathed giving myself a nightly injection.

I have no idea what the right thing is to do, to be quite honest. The only thing I do know is that if he suggests that I should not get pregnant, after all the work I’ve done to prepare my body, I’ll be getting a second opinion.

Clean Bill Of Mental Health

During the time that I lost feeling in my hands, I also had a huge up-tick in seizure activity. I was so scared about how many seizures I was having that I actually contacted my therapist so that if any of them were pseudoseizures (like many were back when I was working with EMDR), I could do the work to stop them.

Well, it was good seeing Karolina for the first time in over 6 months if for no other reason than I enjoy talking with her. I was very pleased when she let me know that I am not experiencing pseudoseizures and that I am in such good mental health that she doesn’t want to hear from me again unless I am going through some difficulties and really need her or have some happy news to share with her.

I talked to her about all my worries (none of which were irrational automatic negative thoughts!) – about what could happen if I lose all feeling in my hands and I’m holding my baby, and she said that it’s a legitimate fear, so my best course of action is to be extra careful to pay attention to my body and be safe with the baby. You know. The baby I don’t actually have yet.

My current challenge is to only worry about handling things when there is actually something to deal with! No fighting ghosts. My real job in all of this is to be fully present in the now and to continue to practice good self-care. So far, so good.

Cheesy, gooey goodness…

On a completely different note: I’ve been thinking more and more about how I really miss cheese when we’re being strict with the paleo diet.

Don’t get me wrong — I know the plan was to be strict during lent, but when you’re dealing with an MS exacerbation, you don’t always have the time or energy to cook and clean the way you need to in order to be eating clean. I have to confess, I’ve had pizza this week… more than once. And I don’t regret it even a little.

I did, however, decide, on a whim to google “paleo cheese” and was surprised to see information pop up! Apparently, there are a kajillion different kinds of vegan cheese that also fall under our paleo guidelines. (Ok, so apparently a kajillion is a term in my mind that means “more than 20.”)

To celebrate this, I created another board on the Paleo Compendium just for paleo cheeses.

The one I’m looking the most forward to trying is this Velveeta-wannabe.

I’m hoping it’ll actually be melty and good to use when making enchiladas or jalapeno poppers.

I’ve also been thinking that I should create a graphic for the Paleo Compendium that folks can use to link to it.

MS Walk 2014 – Chicago Lakefront

It’s been a few years since I participated in the yearly fundraising efforts of the National MS Society because of seizures. For almost 5 years, seizures stopped me from feeling comfortable with exercising. Heck, I didn’t feel comfortable even walking anywhere alone. I didn’t feel safe. Fortunately, this year, I’ve overcome that fear.

Nowadays, I regularly hit the gym 4 days a week at least. Some days, I’m even so awesome that I can bike 12 miles in 45 minutes! 🙂 But I’ve also had a few days here and there where I’ve ended up seizing while on an elliptical strider or during weightlifting, and have had to go home. 😦 At least I tried! No matter what I’m doing when I’m at the gym, the goal is to honor my body, so I work out with Adam and am very careful not to over-do it.

Yesterday, I created a team for MS Walk 2014! It’s Team MS EL Redux, named after the support group that I participate in on Facebook. You don’t have to be in the group to join us or even in Chicago! You can be a virtual participant and help us raise funds if you’d like to.

I also personally registered both Adam and me for the walk. Here’s a link to my personal fundraising page. I’d really appreciate it if you would donate! And if you don’t have the funds to donate, don’t sweat it. I’ve been there. Please share the link! Every little bit of promotion helps!

Here’s a shorter link: http://main.nationalmssociety.org/goto/rachaelshapiromajka

Hope you’re having a great day! Thanks for stopping by. ❤

7Mar2014

What’s shakin’? (Not me!)

Posted in Multiple Sclerosis, Paleo Diet, Recipes by Rae

I can’t believe it’s already Friday of MS Awareness Week (though the whole month is MS Awareness Month), and I haven’t done a blog post. That seems kinda wrong.

To be fair, however, life has been challenging this week — lots of seizures. It was like I was back in Glendale when I was first diagnosed. I was just having them over and over again in what felt like a loop.

I called my MS specialist on Tuesday, but I haven’t heard back from him. His nurse called and scheduled me for the soonest opening, which is March 21st… two weeks from today. (He’s actually booked up through June!) I think I’m going to call and cancel it. I was having really intense pain in my lower back and unrelenting seizures when I called in the first place, and now, I’m pretty much fine. I only had 5 simple partials yesterday, which is nothing. I can handle some facial twitching.

Today, so far, I’m seizure-free, and my back feels fine. I was really worried when I called that I was still having a relapse, even though I took a medrol dose pack about 2 weeks ago. My body’s been acting so weird. I’m glad that it was just a pseudoexacerbation. I must have been fighting off a cold or something.

Increase Your MS Knowledge: What is a pseudoexacerbation?

From Health Central – “A pseudoexacerbation is a flare up of existing symptoms caused by another medical event, such as a urinary tract infection, flu, or elevated body temperature. Pseudo or not, it can stop you in your tracks as sure as any true exacerbation. However, new lesions are not being formed and your MS in not really progressing.

True MS exacerbations are caused by inflammation in the central nervous system which damages the myelin and disrupts the transmission of nerve signals, causing a wide variety of symptoms. This type of event can cause new symptoms and permanent damage, lasting from 24 hours to several months. Severe exacerbations may be treated with steroids in order to reduce inflammation and shorten the length of the exacerbation.”

So, for those of us with MS, we get to feel awful while also questioning ourselves to figure out if we might be sick or too hot or whatever before we even call our doctors to treat the problem. Basically, if I feel awful for 3-4 days, I’ll call a doctor. Otherwise, I assume everything weird that happens in my body is a pseudoexacerbation.

Pseudoexacerbations annoy me less than pseudoseizures.

Since I only tend to have seizures nowadays when I’m also experiencing other MS symptoms, I always think of my seizures as being part of MS… but when I initially began dealing with seizure disorder, doctors suggested that I also see a psychologist. While they could identify the epileptic activity that caused the simple partial seizures that I experience, they were stumped by the time travel (complex) seizures and thought it was likely that they were caused by subconscious psychological issues.

For over a year, I saw a psychologist and worked with EMDR (Eye Movement Desensitization & Reprocessing) Therapy. I’ve written a lot about it. It was immensely helpful to me. In fact, the majority of my seizures stopped, thanks to the work we did.

To give you an idea of how intense and repetitive the seizures were on Monday, I actually went so far as to contact my most recent therapist to see if we could do some work (potentially with EMDR), just in case any of these recent seizures are being caused by my subconscious. She said it was good self-care, so even though the vast majority of the seizures have abated, I’m still going to see her.

(Fun fact: I found out, after already starting the therapy, that the doctor responsible for the creation of EMDR therapy is actually the mother of one of my good friends. That was pretty cool to me. I’m a big fan of her work both in the realm of therapy and as a mother, because her son is a truly awesome person.)

46 Days of “Strict” Paleo

It’s Lent! You know, the time between Mardis Gras and Easter.

This Lent, instead of giving up caffeine, Adam suggested that, just like in 2012, we be strict with keeping paleo. We’re not doing another Whole 30 or attempting a Whole 46. We’re just doing regular Paleo, so we can still have a little honey and maple syrup here and there. In truth, I am pretty sure my Whole 46 was just regular paleo too, looking back on it.

The big challenge for us will be not cheating on the weekends, when we’re out with friends and family, or when we’re feeling sick. (The craving for wanton soup when I’ve got a head cold is damn near undeniable.)

To make things easier for us (and anyone else who happens to be interested), I created a meal plan for Lent. I even made sure that on Fridays we’re scheduled to eat seafood and not meat, for all the Catholics out there who still follow that rule. (Fortunately, Adam’s as devoutly Catholic as I am devoutly Jewish. He doesn’t really care much about following a tradition that was created to help the fishing economy just for tradition’s sake. I can’t say I blame him. It’s not like I keep kosher.)

Tonight’s dinner is Garlic Roasted Shrimp with Zucchini Pasta.