I’m alright.

As of today, it’s been 2 weeks since I last logged in to either Facebook or Twitter. I got my first, “Are you okay? People are worried about you.” text the day before yesterday.

I was both surprised (a) that anybody was worried (because Depression would have me believe that nobody cares) and (b) that it took 12 days for anybody to miss me enough to check in. (Though, to be fair, I’ve been checking in with a lot of people and making the first move because I recognize my responsibility to maintain relationships that are important to me.)

I had hoped that by posting here about my decision to step away from social media that it would have helped folks to not worry.  And then I found out that WordPress no longer publishes blog updates to personal timelines.  It only works if it’s attached to a Page and not to a personal account.  Adam thinks I should just create a Page for this blog. He’s probably right.

But, if I’m going to put in the work to do that, may as well put in the work to revamp the site and market it to increase readership… to start daily posting again, and hope that by leaving footprints on the path that I walk, that it does anything helpful and good for anyone else.

Thinking about it makes it feel like a lot more work than it is… It also would require me to log in to FB and Twitter and weed my digital garden to curate a better newsfeed experience. Right now, I’m not sure whether or not I have the time or energy for all that. I’ve just started to not automatically reach for my phone every few seconds.

Banality

To be really frank, I’ve dived deep into housewifery and stay-at-home mom-ness in the last few weeks. I’ve been focused on my family’s health and giving Henry the educational and emotional support he needs to grow up smart, kind, strong, and self-assured.

Sure, my house always seems to me to be in dire need of a maid, no matter how often I pick up (an act that feels constant and on-going), but life is happening here in full force. Loads of creativity through messy art projects and loud, often-dissonant, impromptu music sessions. Lots of science and math through baking and cooking and LEGO and video games.

As someone who used to live her life almost strictly for the stories (Cheers to you for being entertaining, 2004-2006 Past Rae), I find myself having a tough time feeling like I have much to gab about on my public, digital diary.

There’s not much excitement to be found in the daily, constant cycle of dishes and laundry, in religiously coupon-ing with multiple apps [Ibotta, Jewel’s app, Fetch Rewards (Use my referral code, 73962, during signup and you’ll get 2,000 Fetch Points just for starting.), & Coupons.com], meal planning around the weekly promotions at the 3 different grocery stores in walking distance to my house, and, oh yeah, managing my health.

The one remotely interesting thing that I’m doing right now is volunteering with Detention Lifeline, and writing legal briefs is only interesting to me because of the kind of nerd that I am. Truthfully, I’m just grateful that my legal knowledge might help, well, anyone at all.

Back on the Keto Bandwagon

One of the biggest changes of the last few months for me was stopping the keto diet and returning to the standard American diet (SAD for short) while trying to conceive because my high-risk OB wanted me to just do exactly what we did to end up with Henry. (The idea being that since Henry’s pregnancy was uncomplicated and he’s healthier than any of us, I had it right the last time around.)

Well, my 38 year old body isn’t my 33 year old body, and pain and seizures from unnecessary inflammation caused by diet does not make for optimal sexytime.  There’s an order of operations here that just cannot be ignored.

So, I gave the SAD 3 months. I gained 10 pounds and started genuinely struggling with MS, seizures, and depression again. Come to think of it, if it weren’t for the switch in diet, I probably wouldn’t have had the time-travel seizure that created the desire to quit social media. So, yeah. That’s enough of that nonsense.

Do I think I’m going to keep keto throughout my pregnancy?  Definitely not. I want to make sure a developing child has everything it could possibly need while inside me. And morning sickness absolutely begs for carbs. But fertility specialists recommend the ketogenic diet for both men and women who are trying to conceive — and that’s where we’re at. Plus, it helps with MS – both with managing symptoms and with slowing progression. I’m already supplementing with a prenatal vitamin with extra DHA and also take additional folate, so hopefully, everything will work out the way it needs to.

After having a spontaneous miscarriage in August of 2017 and having to end a pregnancy in late November of 2018 due to genetic abnormality, I’m really, really hoping that the 3rd time is the charm. I’ll do whatever needs to be done to help Baby Majka #2 to join our family. We all already feel their absence, and it sucks.

But it is nice to be able to sleep through the night, so I’m not taking that for granted for even a moment.

In that vein of thought, I’m going to get to work on a brief for a guy who is detained in one of our our many American concentration camps, so that he will eventually get to have some good sleep too.

Not Alone.

“You’ve always been addicted to the internet.”

Those were the words that my brother spoke yesterday when we talked on the phone. And he’s right. I was actually addicted to social media before the world wide web was a thing. Back in the early 1990’s, I started getting on bulletin board systems (BBS for short) in an effort to connect with people during the times that I spent at home alone. I’m pretty sure that I was 11 years old and in 7th grade the first time that I dialed in.

“If you’re on the computer with other people, you’re not alone.” was my response. We chuckled about it and moved on with our conversation.

But it got me to thinking. Even when I went away to summer orchestral band camp in 10th and 11th grades, I spent a good amount of my free time (when I was not practicing percussion) in the library at Sewanee, telnetting in to Shadowscape in the hopes of saying hi to friends. I spent time when I could have been connecting with new friends, or growing as a person, desperately trying to stay in touch with old ones so that I wouldn’t be out of the loop when I got back.

The same was true for me in college. Using the BBSes to stave off loneliness was such a real thing for me that I continued to do it once I started at Berklee. With the advent of AOL Instant Messenger, I lost the big conversations that happened in teleconference, but I got closer to many people through individual chats.

I used my computer for friendship so often that my first set of roommates kicked me out for typing too loudly, late at night. My second-semester roommate also noticed how glued-to-the-screen that I was, as I chose not to try to find parties or hang out with other students and instead waited, often for hours, for my long-distance boyfriend to log on to say hi.

I transferred to USC my sophomore year of college, and tried in vain to rush a sorority and make friends in real life. My roommate was a total cunt who went out of her way to hurt me. And I met my first husband, who was similarly attached to his computer, though his addiction was video gaming.

I realized that USC wasn’t the place for me, and I went back to Berklee… but I didn’t have the self-confidence necessary to break up with that guy, so, even though I had my own apartment in Boston, I didn’t go out exploring. I didn’t go to parties in a city where there are more college students than regular citizens. I stayed in, waiting for him to log on to See-You-See-Me or AIM. And on the rare occasion when I did choose to leave the apartment or have friends over, he accused me of cheating on him (which is kind of hilarious in retrospect, since he went to parties at USC and admitted to cheating on me.)

After he moved to Boston, I will admit, my obsession moved from social media to him and business planning. I was convinced that if I wrote the business plan for AudioXtacy well enough, that I’d be able to get venture capital, and could help change the landscape of the music industry. Oh, the hubris!

In late 2002, one of my friends from the BBSes introduced me to Live Journal, and a new obsession was born. Not only could I keep up with my friends from the BBSes who were busy writing about their thoughts, feelings, hopes, and dreams — but also friends from college who were trying to promote their bands and build their brands.

In 2005, after my divorce, I moved to Los Angeles for law school, and Live Journal is where I found my people. There was another girl from the BBSes who had moved to L.A., and our friend-overlap was huge, so she invited me to meet “the geeks” she was friends with in L.A. It was love at first type.

If there was ever a time in my life when I actually got out of my home and lived, it was during my first 2 years in Los Angeles. I was the Section A representative for the Student Bar Association. I felt what it was like to be well-known for something other than being the weird, brainy Jewish kid, and I liked it. I went to bars or parties at least 2 nights a week. I read up on human sexuality when I wasn’t reading case law. I worked out at least 2 hours a day, and was in better shape than I had ever been in my life. I got on OkCupid — another social network — which was responsible for my meeting and ultimately falling deeply in love with Adam (my current and forever husband), who ended up getting a job at MySpace.

And then, I was diagnosed with MS.

The diagnosis itself wasn’t what drove me back to social media overuse, though it is what caused me to start this blog. Truthfully, I never stopped reaching out online. I was still posting daily (sometimes multiple times per day) on Live Journal, always had AIM open on my system, and with Adam and our friend Gideon working at MySpace, I spent a truly stupid amount of time on that platform as well. Once Twitter and Facebook became things, I was on them, immediately. And often, to my detriment, in class. Hell, I even had a Friendster account at one point.

When seizure disorder struck, and I couldn’t make it to all my classes or safely go out with friends, Live Journal and Facebook were my only real windows to the outside world and the people I cared about. Then Live Journal got purchased by some Russians, and everyone just stopped blogging.

I spent a good 5 years couch-locked because of seizures. During that time, if I wasn’t preparing for the bar exam or doing the basic chores of life, I was on Facebook (or, for a hot second, Google+). That includes when we had to move to Romeoville because MS and 2 years of unemployment had basically bankrupted us, and the years we lived in Chicago-proper, before having Henry.

After Henry was born, Facebook became even more important to me because the message boards on TheBump were filled with angry, self-righteous bitches. I was so painfully lonely in that apartment, trying to figure out how to be a mom while dealing with MS, seizures, lack of transportation, and a horrible case of PPD.

And now, after studying how food affects me, I have fewer seizures than I have for the past decade. Most days, I can walk to the store or Gymboree with Henry easily. Most weeknights, I can make it to the gym. But I wasn’t fully living in meatspace.

Where did I look for healthy recipes? Facebook (and Pinterest). Where did I go for support and guidance with weight loss or suicide prevention or questions about motherhood? Facebook. Where did I do research into the best methods for homeschooling my son? Facebook. Where did I spend most of my time, when I should have been cleaning and connecting with my son? Facebook.

I was still looking online for companionship. I was still scrolling compulsively. I was still feeling innately lonely. Hell, even with my husband in the room, I still felt the need to constantly check in, and I didn’t realize how that may have been hurting him. (Sorry, babe.)

And when my PTSD went absolutely haywire a couple of days ago because of the combo of time-travel and a terrifying news cycle, I got angry when confronted with the fact that I quite literally couldn’t look away.

So, at the age of 38, I’m breaking a pattern that has served as an emotional crutch for 27 years — nearly two thirds of my life. It’s downright painful.

I feel like I’ve abandoned a ton of people who I deeply care about, even though I am actively reaching out to folks on the phone and over text. In the interest of personal growth and positive mental health, I’ve abdicated responsibility as an admin on more than 20 groups, without warning anyone, which feels really shitty, since I derived a sense of purpose from helping people in those groups. And to be frank, I feel like I’ve entirely cut myself off from society, since I still can’t drive anywhere, and all of the community’s social events are available to view there.

I feel like a failure at one of life’s most basic skills: just being okay being alone. And I have no idea how to make friends who aren’t the mothers of my son’s playground playmates anymore. That being said, I’m profoundly grateful for that small handful of mommies. They are real friends, and it’s because of them that I feel like I am up to this challenge.

I hear that making friends after your 20s is tough for most people anyway, and that fear of loneliness drives some of humanity’s most prolific and toxic behaviors, like substance abuse.

So, I guess, when it comes to needing to grow this skill, I’m really not alone.

Opting out of psyops.

So, longtime readers of this blog are well aware of the fact that I have seizures that occasionally culminate in postictal confusion where I believe it’s a different date when I wake up. I like to jokingly call it “time travel.”

Recently, I had a larger seizure (which is increasingly rare for me since making changes to my diet), and when I woke up I was certain it was 2003.

16 years is a huge difference when it comes to life, the news cycle, and, well, pretty much everything! It really freaked me out to know that I was married to a different man, had a 4-year-old child, and owned property in Chicago.

Back in 2003, Chicago was probably my least favorite American city because of some ridiculous shenanigans that occurred here in 1996/1997, when my then-best-friend moved here from Memphis. We made some terribad decisions together on New Year’s Eve. Anyhow — in 2019, Chicago might be my favorite American city — and not just because I live in the burbs. It has all the best things of Boston (accessible, inexpensive public transit), Los Angeles (arts!), and Nashville (low cost of living for a major city) without the detriments of each of those cities.

Anyway, I found myself compulsively scrolling Facebook after I came back from the confusion. I habitually check my timeline when I come back from postictal confusion to try to jog my memory and make sure that I am up to date. This time, I couldn’t look away.

Now, I understand that fight/flight/freeze is a real thing, with or without mental health issues — but I also recognize that I have both the opportunity and obligation to opt out of the info stream that is causing exacerbated problems! So, rather than continuing to be affected by psyops, I am taking a social media break.

The constant news cycle and prolific articles about what is happening in our country are genuinely terrifying. It was so bad that I was feeling an intense need to run to another country, with or without my family. And that’s a terrible, terrible idea.

It is really difficult to not be constantly checking my phone right now. The fear is real. The anger is real. But the idea that staring at the dumpster fire will help me feel more in control of the situation is, well, just false.

One of the things that I’m really concerned about is that I participate in a ton of communities on Facebook that are designed to help with accountability and support for chronic illness, weight loss, and mental health. I don’t want the people in my communities to think that I’m abandoning them, but I have to put my and my family’s safety and wellbeing first.

Fortunately, having a memory problem makes it a little bit easier to avoid social media. I was able to log out of all of my accounts on all of my devices, and I genuinely do not know my passwords to get into, well, anything. That road block is far more effective than the BlockSite app at stopping me from logging in despite my better judgment.

So, if you need me, or if you want to respond, please email or text or ping me here by replying.

Hope you’re all having a happy Friday. ❤

In the Interest of Honesty

It’s been a very long time since I let myself write here. That needs to change.

It Hurt Too Badly Then.

My last entry was private because I wasn’t sure if I could handle response to it. But, it’s been months now — so, in the interest of honesty — I feel like it’s only fair to share that Adam and I had to make the terrible choice to end a very wanted pregnancy at 14 weeks because of a whole bunch of bad physical shit involving both the baby’s and my likelihood of survival. It was a layer of hell, and I’m glad it’s over. It’s been about 2 months since the surgery, and I’ve never been more vehemently pro-choice or more grateful to live in Illinois.

It Hurts Right Now.

I saw Dr. J (my neurologist) in December, and he let me know that he expected me to have a flare because of the surgery, just like I would have if I’d been able to carry to term. Well, it’s presently medrol dose pack time for me, and I figure if I can’t write about having an exacerbation my 10+ year MS journal, it’s time to hang up my blog… and I’m not ready to do that.

It Just Might Hurt Forever.

Also in the interest of honesty — I’m genuinely sorry for saying that I “conquered” suicidal thinking. That shit is habitual AF after 30 years. So, the thoughts still happen most days, and I am still expert-level at acknowledging the thoughts and dismissing them — or telling Adam when they get persistent and not engaging in active self-harm.

It was blithe of me to act like I was “all better.” Truth is, I understand myself a lot better, and getting to that point was freeing. But 30 years of consistent incorrect thinking doesn’t re-route over night, or even over a decade, apparently… much as I wish it would. I just hope, in the great someday, when I actually am dying (not by my own hand), that the part of me that begs for relief or release finally gets to be happy, right at the end… though I’d settle for passing without there being a moment to acknowledge I’m done. I wouldn’t want the opportunity to judge my story like a book. I’m too harsh a critic.

But Life Is Pain. Anyone Who Says Otherwise Is Selling Something.

Real talk, someone I barely knew died about a couple of weeks ago. She was vibrant, sarcastic, geeky, and hilarious — and friends with a bunch of my friends from growing up. I thought really well of her, despite not being close. Her death, while it has no day-to-day affect on my life, hit me harder than I could have anticipated. I’ve been thinking about her (and our mutual friends) every day since I found out.

I keep wondering “Why did she just randomly die, and not me?” It’s a question that is only natural when someone younger than you dies — especially for anyone who is already acutely aware of their mortality and natural human fragility. I keep trying to answer that question, as though an answer exists. (Ha!) I both want to vent my unquenchable fury at the random chaos that is existence *and* justify my being. So, I’ve been trying to focus on being kind and supportive of others. It’s more productive.

Should I Be Selling Something?

In that vein (kindness and support), I’m still working on refining the keto cookbook. I’ve even gotten a domain name for it, and I’m thinking about setting up a simple meal-planning/support service. I just wish I felt more confident in offering that sort of help without a nutrition degree.

I’m doing my best, sticking to the diet and staying under 20 net carbs, but all the seizures I’ve had this week have me questioning if I actually know what I’m doing. More and more, the answer seems to be “no.” Of course, MS does sort of gaslight you about how your body’s supposed to behave… but I think it may be wise to buy a blood testing kit to be sure that I’m actually accomplishing neurologically therapeutic levels of ketones. I’ve heard that the pee strips lie.

Unfortunately, the blood glucose/ketone meters are ~$60, and the test strips are a buck a pop (on Amazon, at least). I’m going to call Aetna tomorrow and see if they offer it to Medicare patients through mail order for cheaper. Heck, even if they don’t, I should probably get one anyway, in the interest of honesty.

The Things That Need To Be Said

It’s been a long time since I have written here… and that’s by design. Truth be told, this blog is, in many ways, much more like a personal diary than anything else. Not sure if that’s a good or bad thing, or if judgment is even necessary (It’s not!) — but it is what it is.

If I don’t write something about this last week right now, it probably won’t ever get written… and something about that feels, well, wrong.  So, even though this emotionally feels like what I imagine getting your brains yanked out of your nose would feel like, I’m going to let the words do their thing, so that, hopefully, I only have to do this once.

On Wednesday, November 28th, I had to terminate a very wanted pregnancy at 14 weeks because of both genetic abnormality in the fetus and additional medical complications that placed both the fetus and my health in jeopardy. 

I didn’t want to do it, but the likelihood the kid would be born was less than 10%, and if it did manage to survive childbirth, the likelihood of it surviving to age 2 was even lower. Its immune system, lungs, and heart were all compromised, and it had a genetic abnormality that would require full-time medical care.

So, it wasn’t much of a choice. Adam and I had to “decide” between ending the pregnancy quickly (before the fetus developed to a point that it would begin suffering) and a best case scenario that involved impossible odds and required money we could never scrape up.  The most likely outcome of not deciding to end the pregnancy as soon as possible was that at least one of us would die, possibly both of us.  On the other side: if I ended the pregnancy, Adam and I could try again, and would most likely not face the problem again. (One educated friend described our situation as being hit with genetic lightning.) 

Family members and close friends keep checking in — wanting to know how I’m doing, and the answer is the same as it has been since the cystic hygroma was first spotted at week 11. I’m shitty!  And okay.  I’m very sad about the situation. I’m angry at nature. And I don’t want to talk about it. In fact, I’m typing about it right now because it requires the least amount of using my voice or emotional strength to communicate with anyone about this. 

Presently, I’m sore and achy and exhausted on every level. I’m still healing, and will be for the next 2 weeks, apparently.  But really, really — no matter how much grief I’m dealing with, no single emotion has overwhelmed me as strongly as the intense fury I hold for the people of Ohio, who, while I’ve been going through this, have been working hard to make the seemingly-unending agony that I was experiencing into a capital offense

So, while wrestling with the situation, waiting for genetic testing to be done and then returned, while worrying about what this could be — for the week leading up to the painful testing (CVS: not comfortable.) and the next 2 weeks leading to surgery, I kept asking myself, “Why not me? Should I die instead? Am I a murderer? Do I want to kill my child?”

I kept thinking about how hard I worked over the last decade to stop cyclical suicidal thinking. I kept asking myself if it wasn’t a more ethical choice to just kill myself instead — if this wasn’t somehow my fault. Doctors assured us that neither Adam nor I could have caused either of the medical situations that affected our fetus, but I kept searching for reasons to hate myself. I kept looking for malfeasance.

I found myself genuinely wondering how a loving and all-knowing God could create pregnancies like the one I was experiencing and then also make unkind idiots who believe that a woman should be put to death by her government if she, her doctor, and her partner made the horrifically painful, but necessary choice to end a pregnancy that was already all but guaranteed to kill the baby within the womb, and definitely within the first 2 years of life, but also put that woman’s very existence in danger as well.  

It honestly boggles the mind to think that an action that my OB/GYN — an expert in high-risk maternal fetal medicine — called “the only compassionate choice” is also, somehow an action deserving of death in the minds of folks who have never had to experience it. 

To be clear on my perspective: There’s no goodness in letting a fetus develop to the point that it has cognition and can feel pain, just so that it can definitely die, painfully, before it would ever utter a “hello.” There’s no Godliness in making a woman choose the life of a doomed baby over her own. There is no legitimate government interest in actively increasing the misery, pain, and financial burden of the parents of a doomed and dangerous pregnancy.

Society does not need to be protected from mothers like me. I do not belong in prison for life for this. I have to live with this. I have to live with myself and the knowledge of what this experience feels like and means about nature and my place in society and even the cosmic order. I chose to live… so I had better fucking live.

Part of the reason that I haven’t written about this or been willing to talk with the many of you who have reached out is that I’m not looking for anyone’s permission or absolution. I’m not signing up for judgment, and writing about your life or sharing with concerned friends or family members oftentimes seems like an invitation for others’ comments. I don’t have the emotional energy to deal with more negativity. I have enough. Shit, I don’t have the emotional energy to deal with thanking more people for caring! I barely have the will to “person,” let alone to entertain other people’s thoughts and questions.

I already have family members who have decided to bitch behind my back to my mother about how I update about my life quickly on Facebook instead of talking to them. Honestly, I’m just getting info out to people who care about me as expediently as I can. I’m floored and slightly overwhelmed by how many people have reached out with love and support in this gigantically awful time… and my ability to respond has been emotionally stunted, at best.  So, if you’re actually cranky about me not giving you “preferred status” with regard to windows into this hellscape nightmare, do us both a favor and get yourself a hobby. Gossip obviously isn’t entertaining you enough, and I’m not calling to entertain you. 

I am grieving.  But it doesn’t mean I have to share it.  My grief may not look like yours would. I’m not on anyone’s schedule, and I don’t owe anyone. Grief doesn’t care about schedules. Neither does pain.

TBH, I’m not crying much. I’m not thinking about what should have been my 4th child, if pregnancy were always perfect. I’m thinking about how Real Child 2, version 2.0 didn’t make it through beta testing, and hoping against hope that version 3.0 does better. 

I’m thinking about how, if version 3.0  is also a girl like its rainbow sister, I need to fight harder to protect her reproductive rights. 

I’m seething for the women of Ohio, who deserve more respect and care.

And, I’m grateful to live in Illinois, for the time, attention, and care given to me by the medical teams we worked with at UCMC and Northwestern, and to have both my mom and Adam around to help me get through this.

And for Henry, who cannot really understand what’s going on, but who is really enjoying extra time with MeeMaw.

And, yes, sometimes I’m crying out of absolute frustration over my lack of control over some of the most meaningful bits of life… but crying doesn’t help me feel better. Writing does. So, I’ve written the things that need to be said, so I can stop hearing them in my head.

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.

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.

Another month in.

It’s been a month since my last entry. It seems like as good a time as any to update.

Adam has lost 30 pounds in the 6 weeks since we started the keto diet. I have lost 10.  I’m not really sure why I have only lost 2 pounds in the last month. I’ve been doing all the things – food journalling, measuring everything, counting calories as well as macros, but I am at a personal plateau. I got stuck around 185 for months when I was losing this weight the first time. Besides, my shape is obviously changing, and I’m sure that I’m benefiting anyway.

How do I know? Because July 11th was my 10 year seizure-versary, and it came and went without me even thinking about it.

I am becoming accustomed to having energy and being able to think clearly.  And, despite having catamenial seizures, I did not cave and order sweet & sour chicken w/ fried rice… no matter how badly my mind thought I wanted it.

But What Are You Eating?

I’ve been getting this question a lot. It makes me think that folks who are considering the diet haven’t been able to really wrap their heads around how the diet works because it’s so different from the one that they’re used to.

For the curious, my day usually looks like this:

Breakfast

  • bulletproof coffee -or-
  • coffee & a mug cake -or-
  • coffee and scrambled eggs w/cheese

Lunch –

  • leftovers from dinner or
  • a big bowl of spinach and/or lettuces plus whatever I’d have on a sandwich (turkey, hard salami, a slice of cheese, 1 tbsp mayo, 1 tbsp mustard, and a diced pickle is a favorite, as is chicken, bacon, blue cheese, & avocado)

Dinner –

  • some kind of grilled meat (chicken, steak, lamb, pork chop) or fish (usually salmon, swordfish, or tuna) w/ a cooked green veggie (asparagus, zucchini, broccoli, spinach, artichokes, Brussels sprouts) -or-
  • a recipe I’ve grabbed off the internet or created from family favorites, like
    • Adam’s Hand Pies/Calzones
    • Baked Chicken & Cauliflower “Mac & Cheese” Casserole
    • Homemade Pizza with Fathead Dough crust
    • Zucchini Noodles w/Turkey Meatballs & Pesto
    • Keto Jambalaya

Dessert – almond butter or cheesecake “fat bombs”

Snacks – 

  • baked cheese “crackers”
  • string cheese
  • precooked breakfast meats (bacon, sausage links)
  • pork rinds
  • nuts & seeds

Wherein I whine about whining…

Oddly, friends of mine have been adding me to keto communities on FB, whether or not I have expressed any interest.  I mean, it never hurts to have more recipes, I guess… but I’m getting really tired of  the support aspect of many of these groups.

Don’t get me wrong — I’m all about supporting one another in our journeys, but I’m sick to death of reading people whining about how hard this diet is.  I hear enough whining from my 3 year old and from my inner fat bitch who would prefer for me to subsist on pizza and donuts.  YES, the diet is a tough adjustment from the SAD, but whining is toxic.

I want to tell each of these people, “Listen, you don’t have to be on this diet. You’re making a powerful choice and powerful change. Change is the opposite of comfortable!”

I think part of the problem is that listening to other people complaining does nothing to strengthen my personal resolve. It only amplifies the voice in my head that encourages me to quit or purposefully slip up.

I am well past acknowledging that I have automatic negative thought-patterns whispering in my ear, telling me to harm myself. My full-time job is to tell those thoughts to fuck off.  And right now, one way I do that is by powerfully choosing what I do and don’t put in my mouth.

I think that when it comes to dieting/changing your lifestyle/way-of-eating or WHATEVER you want to call it, it all comes down to one question: What’s your motivation?

It’s okay to admit to yourself that you’re changing your lifestyle in order to lose weight and be healthier. It’s important to be honest with yourself. The real problems that cause yo-yo dieting and will whittle away at your self-esteem come in when your motivation for becoming healthier stems from a place of negativity.

If you’re trying to lose weight because you are sad about what you see in the mirror, it’s easier to get down on yourself along the way because you’re focusing on something that makes you sad.  Your weight loss journey then becomes one of escaping the pain of your own self-flagellation.

The sort of negative self talk that comes from this sort of motivation can sound like, “What’s more important to you? Looking good or tasting a cookie? Nothing tastes as good as thin feels.”  The problem there?  Being unkind to yourself becomes habitual, and habits are tough to break. When and if you reach goal weight, you’ll still have more practice at being unkind to yourself than you have practice at giving yourself credit for your achievements, and you’ll wonder why you still feel sad.

If you’re trying to lose weight because you want more time with the people you love, it’s a lot more difficult to shame yourself.  I mean how can you feel bad about wanting to spend time with people who make you smile? “Would you rather eat a cookie or have more time feeling well with your kid(s)?” makes the choice easier for me, at least.

Of course, it’s absolutely ideal for weight loss to be secondary. I’m extra lucky in that regard.  Seizure control matters to me far more than weight loss — but I’d be lying if I didn’t want to get back to a healthy BMI.   The thing is, I know that in order to achieve weight loss or lasting lifestyle change, I need a happy thought to focus on to get me there. The sad or angry ones don’t help as much, and plateaus are very real.

Anyway, I’ve been really appreciating that I learned in therapy that I can’t control my automatic thoughts, but I can always control my actions.  6 full weeks with no cheating is a big deal for me.

The trick to not cheating? Always have something on hand you can eat. Prepping ahead for grab-and-go eating is the name of the game.

Without further ado, here are more keto-friendly recipes that are worth the dishes they’ll create to make them.

Recipes That Are Totally Worth It

keto mug cake

Eat your heart out, Otis Spunkmeyer.

Here are some recipes that Adam and I have work-shopped and fallen in love with over the last month:

Keto Party Mix – This tastes JUST like Chex Mix. It’s the first time I’ve liked pork rinds. I strongly recommend a deluxe nut mix without peanuts, like the one we got by The Snack Artist.

Rae’s Chocolate Chocolate Chip Mug Cake – I love to split this with Henry for breakfast! Best served with whipped cream and/or coffee.

Rae’s Lemon Blueberry Mug Cake – Another good one for breakfast or just as a treat. 🙂

Adam’s Keto Jambalalya – This one takes time, but yields plenty of delicious leftovers.

fathersdaynutsFather’s Day Trail Mix – This is what Henry and I made for Adam for Father’s Day 2018.  Which reminds me… he’s all out and I need to make him more today. 🙂

Anyway! I have taken a long time writing this out today, and I am frankly amazed that Henry let me get away with it.

I hope that you’re feeling well and are having a good day.

It’s time for me to go do chores, despite somehow being sick with a headcold yet again. (If only Keto also improved my immunoglobulin count!)

Let me know in the comments if you have any questions or recipe requests for me and Adam to makeover!

 

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.

grilled-cheese-1

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.

niemollerquotemonmouthnj580pxw

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.  ❤