Chilling

When I was in law school, what seems like a million years ago, we talked, in Constitutional Law about how bad public policy can have a chilling effect on speech.  At the time, I scratched my head, and thought that it would take an awful lot to shut me up…

But it hasn’t.  Or maybe it has, and I’m just minimizing things.

All it’s taken for me to stop writing in my own blog, explaining the day-to-day goings on of my life, my thoughts, my hopes, and my desires for the future, is the knowledge that there’s unwarranted wiretaps all around me and that my husband needs a new job.

I had to scrub my LinkedIn profile to get rid of any references to my blog or any work I’ve done in the MS community. I am legitimately thinking of deleting this blog in its entirety because I don’t want my diseases (and my honesty about them) to stop him from being able to get a new gig.

His current employment situation has become…untenable.

On the bright side, I completely conquered my suicidal thinking, after confronting some repressed memories, and I’m sort of experiencing a rebirth of self. It’s frustrating and beautiful and painful and cathartic.

There’s a lot going on here behind the scenes.  I mean a LOT a lot. But I can’t talk about any of it — because I am afraid of the potential consequences of sharing.

So, I’ll just be over here… chilling.

Hope you’re well.

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I shouldn’t be doing this.

Henry is at Busia’s. I haven’t finished cleaning. But I’m making a short blog entry anyway… because this thing is, in many ways, like a diary for me, and I need to write.

Today, I asked a question on FB that I’ve wrestled with for years. “How do you value your own work?” Because I’m in my late 30s, and I still don’t know.

I’m creative as hell. I write songs. I write poetry. I write blog entries. I create recipes. And yet, when I signed up for a Patreon account, one of my friends was actually like, “Patreon is really for people who make things.” I wasn’t sure whether to be offended or just laugh. So naturally, I laughed and then anxiety took over and I questioned whether or not I am actually an artist or maker or whatever.  I am. This bullshit entry is undeniable proof.

It’s just weird.  When I start feeling well for even a day, the first thing that pops into my head is that I’m not doing enough for my family.  Nevermind if I couldn’t get out of bed because of fatigue 4 days ago. TODAY, I need to fucking capitalize on it.  And that’s really how I live at this point — in the moment. Do what you can when you can.  That’s why I’m blogging right now instead of washing dishes.

I’ve got people bugging me about the keto cookbook that I’ve been working on, and when another friend asked if I was going to charge for it, I actually laughed out loud — partially because I refuse to pay for recipes (They can’t even be copyrighted, y’all.) and because I hadn’t even entertained the idea of selling it.  I just want people to feel better, and the idea of getting paid for something that I wanted to do anyway seems too good to be true.

It made me think about the Tao of Rae and the short amount of time when I self-published it on Amazon and Barnes and Noble, and how stupid I felt, having priced it as low as possible, and, yet, no one downloaded it. But worse, I felt ashamed for having tried. So, I took it off those services put it on here for free download, because, why not? I mean, I’d done every chapter on this blog anyway, and it was pretty clear no one was gonna pay to read it. Why should they?

I guess what I’m bumping up against is this sense of utter futility and pessimism. And that’s just familiar as all hell. I know how to deal with it. Ignore it and move forward.

I’ve come to view these feelings of self-doubt and sadness as a signal that I’m on the right track towards having a happier life. Like, if I’m feeling down and like I suck, I need to push harder. I know that if I just force myself to butt up against those feelings more, creation will begin. Something will come out of me.  Something good? Who knows. But something real? Certainly.  It might even be relateable for others.

Fighting ghosts is at least half of having PTSD.  And if you don’t fight them, they get to control you. Giving up control to a cycle you’ve already lived through more than once is just bullshit. And flourishing after trauma means not allowing yourself to become your abuser.

Resilience, I’ve found, has so much less to do with letting old wounds heal and so much more to do with acknowledging that the old wounds exist — saying “I see you.” to your past self and then just making better choices than she did. Fuck, even if the choices aren’t better, at least let them be different. Figuring out how to work around emotional booby traps has so much more to do with being present in your skin in the moment than thinking about the fact that they exist.

So, now, I’m going to go be in my skin, in the kitchen, loading the dishwasher. Adam is on his way home, and I’m pretty sure I’ve maxed out my skillset on overthinking. 😉

BTW – I’ve been published on Modern Day MS a few times since my last entry. Here are links to my articles, for anyone who wants more to read!

THE KETOGENIC DIET FOR MULTIPLE SCLEROSIS

RACHAEL’S RECIPE OF THE WEEK: SHREDDED CHICKEN

RACHAEL’S RECIPE OF THE WEEK: ZUCCHINI NOODLES

And the Paleo Compendium, which I’ve devoted countless hours to and never made any money from, is up to nearly 3500 followers with 9000 views a month. 🙂  Another thing that fits my pattern.

I wonder what life will look like when I value my efforts.

Diet and Still-Not-A-Dictatorship

Diet first. It’s easier.

Keto’s still going well. I stopped using MyFitnessPal and actually paid for Cronometer. I regret it, since Adam is happier with MFP, and I’ve had to input no fewer than 20 recipes just for myself in the last 2 weeks.

Part of me wants to switch back to MFP because y’all can see my food/activity diary there, but more of me is like, “Dammit, I paid $40 for this program! I’m gonna use it!”  The reason I paid the $40?  To be able to share recipes with Adam. 😐

As far as deciding which caloric/macro goals to go with, I opted for the goals that I originally had in MFP because I don’t want to lose muscle mass.

Calories 1490
Carbohydrates 19 g (5 %)
Fat 116 g (70 %)
Protein 93 g (25 %)

Weight as of yesterday morning: 188.1 (Whaaaaat?)

I’m down 8 pounds since the start!  It’s kind of crazy to think about, since I didn’t lose any weight on paleo, even with exercise, even when I stuck to it for months at a time. What’s even weirder is that losing weight was not really the point.   Seizure control, improvement in depression and anxiety, and more energy was.

Presently, I’ve got more energy than I used to have on a daily basis.  It’s especially significant since I’ve been really sick this week with an upper respiratory infection.  Like on-antibiotics, sleeping-next-to-a-vaporizer, needing-to-put-Vaseline-on-my-nose sick. I haven’t had an appetite, but I’ve made sure to take all my vitamins and everything.  I’m still in ketosis, according to the strips.  Adam even rocked my socks off yesterday by making 90 second keto mug bread and turning it into grilled cheese.

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Not my sandwich, but very similar looking.

What might be the most significant change, however, is that my constant inner negative chatter is conspicuously missing.  The ruminating suicidal thoughts? Gone after the first full week at or below 30g of carbs. The constant fear that I’m doing something wrong and that my whole world is going to crumble to nothing because I’m somehow woefully inadequate in a way that I cannot even grok? Only present when my PTSD has been triggered.

If my experience is normal, I can’t imagine why changing to this diet wouldn’t be part of any regular treatment plan for folks who are chronically depressed and/or suicidal.  Maybe we just don’t understand the brain or nutrition well enough yet. Maybe I’m an outlier. *shrug*

Anyway, I’ve had fewer mood swings, been more patient with Henry overall, and I’ve been more motivated in every area of my life, despite being sick-on-top-of-ill. Altogether bitchin.

But what’s really super cool? The lack of seizures. Don’t get me wrong — I had a harder time last night (at least 4 of them), but I also had a low grade fever. Pseudoexacerbations happen, yo.  This feels like it’s getting the job done.  I hope it is.

But Really Though…

TBH, no amount of food-obsession-to-help-me-feel-in-control can stop me from thinking about the insane shit happening at our border.

I can’t believe that I find myself wondering why the “good guys with guns” would let thousands of children languish in prison camps.

I can’t believe that I find myself wondering — with police, soldiers, and thousands of other government employees also taking oaths to protect the Constitution, why no one appears to be actively protecting it, aside from lawyers and judges — who are working their happy asses off, I might add. (Seriously, my hat’s off to the ACLU, Southern Poverty Law Center, Lawyers for Good Government, KIND, and RAICES.)

I wonder how there can be so many millions of us deeply outraged at what is happening, and how we can organize marches that will undoubtedly be attended in record numbers — and yet, we march on peaceful streets rather than storm the camps and free the kids.

I wonder about how people can cheer over the President’s executive order when it doesn’t mandate that the children who have already been separated be returned to their families and specifically authorizes indefinite detention for all families in the future.  Nobody deserves “forever” in jail who isn’t a convicted murderer or serial rapist, whether they’re with their family or not. Innocent children should not grow up in jail. The mere thought of it sets me on fire.

I wonder what our lives are even for if we can’t protect infants from the horrors of the American prison-industrial system. Or from being trafficked by the government into illegal adoptions. (Many of the detained children have been sent to Michigan to be under the care of Bethany Christian Services. It is an adoption agency with ties to Betsy DeVos. The adoption system in America is a multi-billion dollar industry.)

Why are we asking #wherearethegirls? Why are we asking #wherearethebabies? Why are we accepting that the camps are demanding 2 weeks notice from government officials before they’ll allow them to even VIEW what’s happening on site with their own eyes? How can we bear witness to kidnapping and false imprisonment and not take direct action against it to make it stop?

Because these acts are being perpetrated by our government, under our watch, with our money, we, as citizens, have an affirmative duty to mitigate the damage and right this wrong as quickly as possible. We are not bystanders! We are part of this.

Are we, as citizens, really so desensitized, so tired, so weak, and comfortable that we can hear the screams of babies in detention, caused by our government, funded by our labor and wages, and not only not feel culpable, but believe there’s truly nothing we can do to make it stop other than giving money to fundraisers and complaining loudly to people who represent private interests (like the for-profit prisons who line Trump’s pockets) more than they do their constituency?

Can we be aware of rampant (1,224 complaints so far!), horrific abuse and still be too afraid of our government to rise up in any meaningful way?

Yeah, probably, until they start coming for us… which is pretty likely to happen since 2/3 of the population has no 4th Amendment rights when it comes to border security.

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The real kicker here, though, is that Congress is already gunning for us. They want to fund our concentration camps by getting rid of Social Security, Medicare, and Medicaid. They want to pay to enslave people who wish they were citizens by killing actual citizens. The irony isn’t lost on me — especially since  our own government’s study showed that refugees don’t cost us money. They bring in money.  My strong suspicion is that Social Security, Medicaid, and Medicare are also bringing in money to America by propping up Big Pharma and the medical industry, but that’s just a guess.

Besides, we all know this isn’t about money.

There are members of the disability community who say that we’re literally fighting for our lives now.  I think our lives are already forfeit, and we should go out swinging if we’re not running, but I’m admittedly pessimistic.

My husband’s litmus test for whether or not we should try to leave the country is if there’s a registry that gets started.   But, let’s be real here: I don’t need a registry to be in danger.  I’m disabled and on SSDI and Medicare.  I’ve been on a registry since 2011, and I know how fascism works.

What I wonder is how long it’ll be before America relents and accepts these concentration camps as “normal” and forgets that the government has already “lost”  1500+ children? How long before another school shooting?

If Americans can’t or won’t stand up to make it safe for our children to go to school without fear  of of being shot — to the point that it’s actually more dangerous to go to school than it is to be a solider in an active war-zone, and they can’t stand up in a meaningful way to stop the literal torture of refugee children whose only crime was hoping for a better life in our country — then they’re sure as shit not going to stand up for their aging parents or disabled friends and family.

So, the question becomes “What can we actually do?”  And I think that the elderly and disabled can do a lot more than Congress supposes. We have a lot more value than most folks realize.

Immigrants do too.  Maybe we’ll all be lucky and Melania will save the world… but probably not.

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Better Living Through Science: Keto

When your mom calls you an hour earlier than normal and says that she’s looking forward to reading about Week 1 on the keto diet, you set up your piece-of-shit laptop  (which will hopefully not crash while I am writing this entry and also will be replaced by the end of the week) and hope for the best.

Week 1: “Lazy” Keto

Adam got tired of me driving myself nuts trying to create perfect meal plans. It mattered far more to him that we get started. So, on 6/4, we decided to jump in with both feet and give it a shot, even though we didn’t have much of a plan.

We’re lucky enough to live in easy walking distance to 4 grocery stores. (No joke: Walmart, Aldi, Jewel-Osco, and Al Nour Supermarket are all less than a half mile.) So, unlike the majority of people on the ketogenic diet, going day-by-day was actually doable and helpful.  It gave me a chance to get out of the house, change our dinner plans as necessary, and pick up ingredients for new recipes that we wanted to try.

For the first week, I went based off of this keto calculator.

1481 kcal Daily Calorie Intake
25 g Carbs (7%, 100 kcal)
80 g Protein (22%, 320 kcal)
118 g Fat (71%, 1061 kcal)

But, when I went to set my percentage goals in MyFitnessPal, I only had options by 5’s, so I ended up with this.

Calories 1490
Carbohydrates 19 g (5 %)
Fat 116 g (70 %)
Protein 93 g (25 %)

I’ve made my food diary on MyFitnessPal public because it’s easier to link you to the information than it is for me to take screenshots — or worse — to type it all out by hand.

Here is how I ate last week.  I did not food journal on Saturday, but I stayed to foods I knew were okay.

Based on my personal data, it said the keto calculator said I should stay above 79g of protein because I am mostly sedentary. I could go as high as 131g — but the best idea is the middle ground of about 105g. When I put my percentages into MFP, it gave me 93, which seemed reasonable.

When I switched to Cronometer, yesterday, however, and chose the Ketogenic diet, my goals appeared very different.

Calories 1640
Carbohydrates 20 g (net: total minus fiber)
Fat 156 g  (Much higher than the original calculator recommends)
Protein 39 g (Much lower than the original calculator recommends)

I’m not really sure which calculator to trust… but I do know that following week 1’s recommendations was doable.  I feel good about my ability to follow that diet.  And, it had a ton of benefits.

  • Reduced seizure activity (thought seizures were still very present towards the end of the week, when I was due for my period)
  • OBVIOUS CHANGE IN BODY SHAPE (My pants are literally falling off me today.)
  • Cognitive fog: lifted
  • TONS more energy

There was, of course, the other side of the coin — Keto Flu, which is bizarre. I needed a ton more sodium and potassium, but twice, chicken stock (bone broth) made all the difference in the world.  The supplement helped too, but I’m not sure how much good 99mg is when you’re supposed to aim for 3500mg

If you’re on Cronometer, and you want access to my food diary, send me a request. My email is rachael.renee at the gmailz.

Recipes That Are Totally Worth It

So, one of the things that happened this week was a lot of experimental cooking and recipe synthesis.  There will obviously be more next week, but here’s some of the recipes that got me through this week.

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My Italian sub roll-ups are so freakin good.

I also tried my hand at making cookies with almond flour, coconut flour, Swerve, and cacao nibs.  They were pretty rough, so the  recipe doesn’t deserve to get shared.  I’m going to try again, this time with Lily’s chips.  If it works out well, I’ll post the recipe.

I’m sure there was other stuff I was going to write about, but I have too much other crap to deal with today.  I’ll try real hard to get back on before next week’s update and write more.  ❤

Mulligan.

I legit believed that going to visit my parents for a week would give me the time and opportunity to finish putting together a keto meal plan, recipe archive, and grocery lists. So foolhardy!

I always forget that the first 2 days in Colorado are eaten up by travel and altitude sickness and the last one is also eaten by travel.  I also tend to forget that “visiting my parents” actually means visiting my parents.  It doesn’t mean “dropping my kid off with my parents and taking the opportunity to finish doing a lot of work.”

I have to say that I’m incredibly proud of myself — both for going on this trip and for the way that I handled a ton of situations while I was there. I flew twice with my 3 year old, without anyone else on the plane with us, and everything went well. (We even got compliments!)  I saw my parents, brother, sister-in-law, nephew, cousin, and aunt, and despite the millionty reasons that PTSD, GAD, or depression could have thoroughly hijacked our good time, I managed to leave town on good terms with everyone, and only had a couple of less-than-optimal moments. I managed to leave the room, collect myself, and cool down instead of being immediately reactive and escalating anything. I asked probing questions and listened to the answer to see if what someone was intending to communicate was, in fact, what I actually understood. I used the butterfly technique successfully when necessary.

So, I have no regrets about not starting the ketogenic diet today.  I could have done it anyway and tried flying by the seat of my pants, but every website I have read with regard to this WOE (Way Of Eating, for those not in diet discussion circles) says that careful planning and execution are the keys to success… and even though it means 1 more week of the SAD (Standard American Diet), I’m not wasting any energy on being disappointed in myself.

TBH, I’ve been too busy today alternating between schvitzing like a refrigerated can of coke on an August day in Memphis and suddenly having intense chills and seizing. Thank goodness I’m back in IL and can take an edible that I know works to make it stop. Heck, once the temperature goes above 85, I’m not really good to anyone outside unless I have the right medication and am wearing the proper equipment…

Which brings me to my yearly reminder for anyone who has MS: GET SOME COOLING PRODUCTS SOONER RATHER THAN LATER.  You’ll thank yourself.  I wholeheartedly recommend these guys, but there are plenty of other retailers out there with cooling equipment options. I’m still in love with my under-boob corset of cold and neck wrap.

And now I’m going to get back to work on the diet stuff, because Henry is enjoying Blaze and the Monster Machines, and nobody knows how long this “downtime” will last.

Wishing you the most enjoyable day possible on our national day of outdoor grilling and mourning loved ones.

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. ❤

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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