Ke(y)to Happiness?

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.

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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!  

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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.)

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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?

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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. 

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Obligatory Title For Posting the Bloggything.

We have a new development, folks. One that is pretty significant.

Henry has reached an age where I can set up my laptop in the same room with him, and he actually lets me write!!!

This is awesome! It’s also frustrating, because I have so many things I’ve been wanting to blog about recently.

  • I had a relapse last month. It’s over. Nobody really needs to read about it.
  • Writing for “free” for other publications, and whether or not monetizing this blog makes any sense at all. (Does it? I’ve been writing here for 10 years and never tried to actually make money.)
  • The push-pull between accepting disability and struggling against it — because capitalism and parenting… (Kids are fucking pricey, yo.)
  • Comparing and contrasting the latest diets for MS and weight loss
    • Standard Ketogenic Diet
    • Wahls Paleo Plus (which is a specific type of keto diet)
    • Code Red (which also looks like a kind of keto diet)
    • AIP – Auto Immune Paleo Protocol (which may be done as a keto diet)
    • Wahls Paleo
    • Standard Paleo
  • How to meditate, and why it’s hard sometimes, especially when you’re upset.
  • I also need to finish Barbara Applebaum’s new book and review it.

I removed FB from my phone, btw. So, my engagement with depressed and/or angry strangers is way down and engagement with Henry is way up. He turns 3 in 2 days.

I can’t believe that my little guy is now an avid gamer — good with both tablet and PC video games, and he’s getting better with following directions for card games and board games. Like, I remember freaking out, worrying he was never going to roll over. How we got from there to him demanding freedom to jump between Disney Junior games and PBSKids.org is beyond me. I’m sure it has nothing to do with the foam polyhedral dice we gave him at 6 months…

Anyway, Henry knows his shapes and colors and can count from 1-20 in English (and 1-10 in Spanish, French, and Japanese, thanks to my months-long daily repetition of this video. He also understands some basic phrases in all 3 languages, thanks to Little Pim.) He knows his ABCs and can identify letters individually. He can sometimes sound words out, but real understanding isn’t all the way there, in no small part because he’s an impatient toddler.

Still, he’s able to recognize who I’m texting with even without a picture… so he knows his daddy’s name and the names of his BFFs mommies on sight. 🙂 And let’s not forget that before I entirely cleared my phone’s ICE presets, he’d figured out how to call Busia, MeeMaw, Pa-Pa, and Daddy whenever he wanted to.  The kid is clever. Needless to say, I’m proud of him.

I’m also not sold on the idea that he needs to go to preschool. It can be crazy expensive.  I’m not convinced it’s either necessary or good for him, though I am determined to get him into some quality extra-curricular classes, because he deserves more social interaction.

Right now, I’m looking at gymnastics, music, art, and dance offerings near us. If we still lived on the north side, I’d be signing him up for a kajillion classes at Old Towne School of Folk Music, but we don’t.

I’m actually really bummed that our local Gymboree Play and Music doesn’t offer music classes, art classes, or really anything for kids who are older than 2, other than a single class for families — which means he’d need a sibling under the age of 2…

Tinkergarten might also be a good option, but it’s only 1 hour a week.

There’s always time with other kids at our gym… but we’d have to actually go, and every time we step in the doors, we leave with a new illness.

The cycle goes

  1. Excited to work out!
  2. Obviously sick but going to the gym anyway, because FITNESS!
  3. Unable to get out of bed.
  4. Better but afraid to go back to the gym and get sick again.
  5. Sad about being chubby and determined to change my activity level.

(And repeat, ad nauseum.)

And then there’s always the park… which we’re going to right now, because if I waste a 60 degree, sunny day, shame on me.

Hope y’all are having a good day. ❤

Testing… 1, 2, 3…

*tap, tap, tap* Is this thing on? Well, I hope so.

This week, we, as a world, found out that FB gave out the personal info of, well, pretty much everybody in the country, to Cambridge Analytica — a move which has caused many of my friends to delete their Facebook accounts.

I say, “Good for them.”  I can’t bring myself to do it for a multitude of reasons, despite really wanting to.

While it’s true that I could just write here, I would lose connection with too many people.  My phone already frequently complains that it doesn’t have room to update apps, and I’ve barely got any on there to begin with. (The latest Android system update feels bloated AF.) I hardly use Snapchat or Instagram. I only Tweet when I’m on my laptop, and I’m too tired to learn a new media platform this week. (I’m sick with another upper respiratory virus.) Besides, I don’t want to miss out on any of the psych-ops that are targeted at me. 🙂 Why would I want to waste those agents’ hard work? 🙂

Honestly,  there’s a lot that I want to write about.  So much, in fact, that creating a cohesive entry seems too tough.

So here are things.

Henry’s about to be 3, and he’s pretty fucking amazing.  He’s pooping in the potty now, like a big boy, and that blows my mind wide open. It’s the best. It’s game-changing.  I can’t wait til the potty becomes the toilet.  We’re so, SO close. Of course, once that’s complete, odds are rather good that I’ll be wiping butt #2. (Dear Lord, please see fit to let me wipe butt #2.)

He’s also gotten really good at turning my words around on me at the perfect moment.  “Be calm, Mommy! Big breaths up in your belly!” is probably my favorite thing he’s said to me all week.  He’s also decided that I deserve M&Ms when I make tinkle, too. When I refuse them, it makes him sad. It’s a good reminder that I don’t give myself credit.

Speaking of credit… I’ve been thinking about creating an app or piggybacking on another one.  See, in Habitica, you get coins and experience points for doing things. You “level up” and can use these imaginary chits to buy crap for your avatar — or you can assign “things” to yourself.  (Like 200 gold for a real-life something or other)

I feel like it’s super important for my mental health that I start recognizing the things I actually accomplish, since so many of my tasks are revolving (dishes, laundry, etc.) — and I’ve been repeatedly hearing “You must imagine Sisyphus happy.”

I’m also exhausted right now, and am going to try to nap before my husband gets home with the kiddo.  So, even though I’d love to talk about the many levels of exciting and amused I would be to read a headline like “President Trump Goes Down Because Of Porn Star Gag Order,”  it’ll have to wait.

Oh, yeah, and March is MS Awareness month. Be awarer. *lol*

It’s Not Cancer!!!

The tumors in my liver are benign, likely caused by ~20 years of hormonal birth control. My bone marrow looks good. Chromosomes look good. Doc thinks that the high LDH was caused by nonalcoholic steatohepatitis (NASH) — a specific type of fatty liver disease, which we already knew I was dealing with.

So, amazingly enough, there’s nothing new to deal with here — just another situation where I’m being told to lose weight and increase activity. I’m on board. I’m eating less, thanks to gastritis, and I’m almost done meal planning for a month’s worth of AIP. Part of me is looking forward to it.  It’s gonna be my form of Lent.

One great side effect of genuinely believing that I was about to have to fight cancer is that I have a fucking long to-do list, filled with awesome things.  Stuff like, “Record all your original songs, even the ones that you think are mediocre.” and “Remember how to have fun by going on lots of adventures and writing about it.”

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I will try harder. This health bullshit is boring AF.

I think I’m going to need to hire someone to transcribe music for me. For too many years, I’ve let my distaste for transcription (read: knowledge that my skills are so weak that it’s painful, slow, and often inaccurate) stand in the way of my songwriting.  It’s actually the reason that I dropped out of Songwriting I at Berklee.  I rocked all available lyric writing classes and absolutely loved them, but when it came to actually writing out my own music, to be judged by a guy who has taught iconic songwriters, I cowered. There’s no other word for it.  I felt like I just couldn’t do it… so I couldn’t. And I haven’t. Add the facts that the class was at 9 a.m. and I’d just chosen music business as my major, and dropping the class seemed like a no-brainer at the time.  If ever I wished I had pushed myself harder while in college, it’s then.  Opportunities like Berklee songwriting classes don’t come around every day.

One thing that 2 weeks of wondering about my mortality was good for was recognizing areas where I’ve let myself down, and I’m kind of sick at my stomach over my level of cowardice. I’m gonna work a lot harder on feeling bad about myself for actually making mistakes instead of feeling bad about myself for not doing things that I’m afraid I’m going to fuck up. You can’t fail if you don’t try… but if you don’t try, you’re kinda failing at life.

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Uncorked.

So, this entry is a little overdue, and I’m not even going to pretend that I’m going to be able to be terribly organized in my thinking… but I’ll try.

I’ve been living through a medical shitstorm. Here are the highlights.

  • Tummy Troubles: I had an endoscopy last Friday (1/12). I have gastritis. Unknown cause. Stopped omeprazole & ranitidine. Started taking Dexilant. So far, so good. I don’t know the cause, but I’ve had more energy since I started taking it.
  • CT Scan results: very small hiatal hernia, small umbilical hernia, hypodensities in the spleen & liver
  • Hematology: Lab results were abnormal. They found immature cells in my blood. My immunoglobulins are low across the board and wonky especially in my igAs. LDH was really high. Doc said I needed a bone marrow biopsy, so I did that yesterday (1/17). Results will be given 1/31.

Of all of the diagnostic testing and surgeries I’ve endured in my life, the bone marrow biopsy was, without question, the most painful to endure (though for a short period of time), and the quickest to recover from (less than 24 hours before I was feeling fine.)

I actually said, while still in the room, that I’d rather get another c-section than go through that again. (I’m talking about the surgery being done with spinal anesthesia.  As long as I can’t feel it, I have absolutely no fucks to give. Recovery? That’s another story. Also, I want another baby, so sign me up for another c-section. Seriously.)

I still think it’s hilarious that my mom thinks that it looked like they were trying to uncork a bottle of wine when they were doing the aspiration. I kinda want to do that right now.

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I’m a lightweight, but that doesn’t look like enough.

See, I’m a realist. I know that if they’re seeing shit on CT and my immunoglobulins have been decreasing for a year and my LDH is up and I need to use marijuana to be able to eat that I probably have cancer. Blood cancer? Liver cancer? Is there such a thing as Spleen cancer? Who the fuck knows. It just is a question of whether it’s the kind that you can survive.  I’m ready for a name so that I can kick it’s ass.

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I name you, Carrier Knight!

Anyway, it turns out my deepest, darkest fear right now is that my son will grow up and have no memory of me, so I plan on recording videos. Like, a lot of really awful, candid videos. I might post em here. I might not. I honestly don’t know.  I’m not sure who would want to see them who isn’t related to me anyway. Hell, I don’t even know if Future Henry will want to watch em. Or if he’ll even need them. God, I hope he doesn’t. Truly, I can’t really get settled on whether or not I’m worried.  It all seems surreal.

Like, I’m not scared about adding another disease to the roster. I’m resigned to treatment already. I’m honestly thinking things like, “Hey! If I have to nuke my whole immune system to survive, I might be able to kill cancer and MS at the same time. TWOFER, BITCHES!!!”

And on the other side of things, my parents want to be at the 1/31 appointment, and that part that’s in complete denial about how much this could all suck is like, “WTF, guys. Nothing to see here. This is all boring crap. Stay home. I’ll text when its over.”

So, IDK, guys. This is what my life is like right now.

I’m grateful that my mom is in town, and that Henry is getting special time with her.  I’m grateful that my biopsy site is healing up well. I’m grateful that Adam’s root canal surgery was painless today, and am hopeful for a similar experience for him day after tomorrow.

If I find out that I’m terminal, I wonder what about life I would do differently.  If I can answer that question, I’ll be making the changes anyway.

 

Challenges.

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*

Taking My Sweet-Ass Time

HAPPY DECEMBERWEEN!!!!! 🙂

It’s the most wonderful time of the year… the month of a millionty holidays, including 4 family birthdays, 2 anniversaries, Chanukkah, Christmas, and a ton of other reasons to celebrate that I’m, frankly, too lazy to delineate. Other sites have my back.

Anyway, there’s a lot of scary medical stuff going on with me right now that I have been trying not to focus on.

My Immune System Is Very Slowly Getting Worse

You know how I told y’all that my immunoglobulin is low across the board? (Not low enough to require IVIG yet, but if I get sick for an entire month again like I did in October, I’ve got to go in.) Well, sadly, it’s low and not stable. It’s been consistently declining for over a year now… so my hematologist wants a second set of eyes on me. He says that he doesn’t know why, with all my other bloodwork showing readings that are normal, that my immune system would continue to be in decline, but it is — so, I’ve been referred to a blood cancer specialist at Loyola. My appointment is the day after my birthday.  *tosses glitter in the air*

It’s Probably Because Of My Liver.

Also in the “all tests show normal, but you’re clearly not ok, so I really don’t know” camp is my gastroenterolgist.

About a year ago, I had such severe abdominal pain that I stopped being able to get myself to eat without medication, since the pain was always most severe right after eating.

An ultrasound came back showing lesions on my liver.  So, I got an MRI which showed nothing more than a ton of hemangiomas and the fact that I have a “fatty liver.” Hemangiomas are not troubling. They’re totally natural. They’re noncancerous growths of blood vessels that usually resolve on their own.  The MRI radiologist wanted me to follow up with a CT scan.  I didn’t, because I felt fine after they increased the dose of omeprazole I take, and being this “being medically interesting” thing gets expensive.

Fast forward to earlier this year — I became pregnant, so they took me off of omeprazole and switched me to ranitidine because it’s safer for the embryo — you know, the one that died anyway. (Boooooo for miscarriages.)  I was doing great on ranitidine until November, when the intense pains after eating returned.  Dr. D put me right back on omeprazole and now wants me to get that CT scan.

I have no idea why I don’t want to do it, but I really don’t.  I’ve been taking my sweet-ass time making the appointment, since the medication seems to be handling it.  But I should try to get in before January, since that’s when deductibles reset.

I’ve actually come to the point in my life where I’m trying to comparison shop tests at hospitals to figure out where I can get care for the most reasonable price. UCMC is almost always my #1 choice because of their financial aid options, but Palos Health is much closer. Still, my gastroenterologist works out of MetroSouth, and it’s an option with my health insurance. I can’t get a straight answer from anyone about how much the test will cost. So… I haven’t scheduled shit, thanks to anxiety.

Anxiety Doesn’t Cause Cancer, But MS Drugs Do.

Healthcare in America is BROKEN, y’all. BROKEN. I’m on a Blue Cross PPO through my husband’s work. I have Medicare A & B, and I *still* don’t know if we’ll be able to afford my care.  It’s still no reason not to try to get it.

So, while the GOP debates just how badly they want to fuck over literally everyone in the country, I get to worry about whether or not I have a blood cancer or liver cancer (both of which were potential side effects of my MS meds), while raising a precocious 2 year old and managing my multiple comorbidities.

Oh, and hoping that I’ve gotten the “right” gifts for everyone I love.  😉

Wahls Adventure: Stalled

Another thing that I’m taking my damn time on is starting the Wahls Protocol in earnest.

I tried adding 6-9 cups of veggies to my daily diet, and it looked almost exactly like eating paleo again. (Green smoothie for breakfast, soup and/or salad for lunch, roasted something or other for dinner.) Unfortunately, I tried doing that at about the same time that my stomach was like, “Uh, no food please.”  9 cups of veggies is a lot of volume when it comes to food, folks.

So, I’ve been “feeding my disease” instead of “eating clean” because I have to fucking eat, and whatever stays down and doesn’t cause a fuckton of extra kitchen work is pretty good with me right now.  Besides, it can take up to a year of being strict on her diet before you even feel better — which, TBH, sounds fucking exhausting.

Fatigue has gotten me so badly in the last few months that I’ve spent full days in bed (not on the couch) on several occasions.  I mean, it’s gotten to the point that I keep a protein shake in my bedroom just in case, so I can take necessary medication.

I honestly don’t know how we would handle things without my in-laws’ help with Henry.  This is something I regularly think about when anyone brings up the idea of trying to get pregnant with a second child or my PTSD tells me that for our continued health and safety, we need to leave the country.

My thought is that I’ll plan out Wahls-friendly food choices for January (since everyone and their mama seems to be doing that for Whole 30 anyway), and I can start in earnest then.  Adam got me an awesome dehydrator for my birthday, so that ought to help too. I am looking forward to making some bitchin’ jerky, fruit roll ups, and veggie snacks.

Don’t worry. I’ll share my January plan here and share the love. 🙂

I genuinely hope that you are having a happy holiday season, and that you and the ones you love are doing well. ❤