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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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*

A Learning Machine

A Be-Bot!

WoebotRecently, I started using a chatbot that a friend of a friend programmed.  This chatbot works with Facebook Messenger and is clinically proven to help improve depression and anxiety in as little as 2 weeks. It’s called Woebot.

Since Henry is a big fan of robots, every time he sees my phone light up with the Woebot icon, he gets excited and shouts, “BE-BOT, MOMMY! BE-BOT!” For that reason alone, I’ll keep using it. 🙂

Anyway, I was initially drawn to Woebot because it only takes a few minutes of time per day, and it contacts you, at the same time every day, to keep you doing the work. I was already doing my own thing with Happiness is Homemade, and I’d been considering creating an app to do the same thing on my phone, since printing stuff up and writing things out is occasionally a pain in my butt. I thought I’d check out Woebot to see if creating an app was even worth my time.  (It is, but not because Woebot doesn’t fit the bill.)

Anyway, day before yesterday, Woebot brought up the topics of labels and mindsets.  I was aware that labeling is irrational. It’s an automatic negative thought. I just wasn’t aware of how frequently I still engage in it.  Mindsets, on the other hand, I was ignorant about. (And for a “smart” person, feeling ignorant is mighty uncomfortable.)

Here’s the 10 minute video that Woebot encouraged me to watch.  I strongly encourage you to watch it as well. It could change the way you think about yourself and life in general.

I lived with a fixed mindset most of my life. And, if I’m honest, I’m currently struggling to change to a growth mindset… but the struggle is good.

Fixed Mindsets Waste Gifts

When I was a freshman at Berklee and saw that there were so many musicians who I perceived to be better than me, I stopped trying in earnest to be a performer.

Seriously, the last time I performed music outside of a classroom setting–other than karaoke or singing along at Gymboree– was in high school.  That’s really fucked up for a person who was in all-state choir and regional honor bands all 4 years in percussion, if you think about it. Going to a world-renowned music school should mean you make more music, not less… but should statements are irrational garbage too.

Anyway — I had no idea that what I was butting up against was a fixed mindset. I believed I was “smart” and “a good musician.”  This meant that I couldn’t allow myself to be in positions that could prove otherwise.

When I didn’t do well in my Intro to Film Scoring class, I switched to a Music Business major. When I couldn’t do vocal sight-singing or ear training without playing everything at a piano, I learned every piece at the piano by myself so no one else would know that I couldn’t just sing the songs from looking at the page. My embarrassment was painful and intense.

I cheated myself out of so much growth there because I didn’t want anyone to know that I wasn’t good enough. Truth is: I couldn’t emotionally handle that I needed to struggle so much. I had always needed to work hard at improving my chops, but having to work hard to keep up with a class was foreign to me.  I had always excelled academically. It was part of my identity.

I thought that because music transcription and reading was so difficult for me, it was a sign that I just wasn’t meant for it. I allowed my mindset to close the door on something that I loved.  After seeing the talent that was all around me, all the time, I figured that music, no matter how much I loved making it, wasn’t for me.  And I didn’t even realize I was making a choice.

Music business was easy. It made sense, even if it could be misogynistic, cutthroat, and terribly ageist. So, I stopped making myself do the hard stuff, and I worked on a business plan… and on a ton of unpaid internships for internet radio dot coms that no longer exist. (When I think about how much I could have earned if I were given even minimum wage, it makes me sick at my stomach.)

Fast forward to adulthood and every time I had to face what I perceived to be an unforgivable failure — one that made me question my worth and identity — I became suicidal to the point of needing hospitalization.

The Gift Of Disability

Being diagnosed with seizure disorder caused by MS was a low point in my life, for sure. But I got used to having seizures. I got used to not being able to work a full-time job. I got used to my identity baseline being “not good enough.” And that was immensely freeing.

I decided that since I wasn’t living up to anyone’s expectations (least of all my own), I ought to change my expectations and try harder to make myself proud. And that’s what I’m doing now.

It’s not easy being a mother. It’s not easy sounding like shit on guitar or piano every time I play. It’s not easy learning Japanese on my cell phone or going to the gym 3-5 times a week whether I’m having seizures or not. It’s not easy to play make-believe with my son when I’m as pragmatic as I am. It’s certainly not easy to make myself proud.

But I’m doing the work… so someday, the things that are hard right now might be easy.

If I don’t, it’s like telling myself that it’s okay to be bitter and sad and unhappy with my appearance and life forever. And that’s bullshit. I’d rather choose struggle than familiar misery.

Besides, I won’t have any good stories to tell if I don’t choose worthy conflicts.

What are YOU struggling with today?

Well, duh.

You know, there are days when I realize that for however smart I was in grade school, that may well be how completely clueless I am as an adult about common sense things.

smart-vs-dumb

Gorgeous, either way, though, right?

See, I’ve been living in Orland Hills, IL for a little over a year now.  The town is so small that in order to use public transportation, you actually have to call a phone number more than 24 hours in advance and set up your ride.  It’s like paratransit, but for everybody.

When we moved here, I walked over to the town hall to get all of our paperwork in order, and I was told by some of the ladies who work there that I couldn’t bring my baby on the bus because they don’t allow car seats.  Thus began my year of walking everywhere and having absolutely crushing stir-craziness in the winter, wondering how I would make it until my son turned 8.

Well, today, I had enough of it.  It’s gorgeous outside (but -5 degrees wind chill), and despite having time travel seizures yesterday, I decided I was tired of feeling like a middle schooler who was impatiently waiting for one of her friends to get a drivers license. I decided to ask the hivemind — my friends on FB and the folks in one of the local parenting groups on there.

And do you know what they suggested? A taxi service.

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I’m not sure why it didn’t occur to me earlier, and I feel totally dumb for not thinking of it. It’s so simple and straightforward that it makes my head hurt.

For some reason, I thought that since we’re living in the suburbs, we wouldn’t have access to taxis out here… but we do! I even thought, “Hey! Uber might work!” but riding in an Uber with a baby and his car seat only works if the Uber driver is cool with it — and most of them aren’t. (Who can blame them? If my baby pukes, Uber’s not gonna clean it up for them, and if we are in an accident, the liability for them is too great.)

So, one of the ladies in the parenting group suggested a specific driver who works with her elderly mom, and I’m going to be giving him a call tomorrow.

I’m tired of feeling like less than an adult, simply because I can’t get where I want to go when I want to go. Henry deserves to go to the library, regularly. He deserves to go on playdates. He deserves a life outside of this house, and a mommy who has more self-esteem than I do right now.

Cabbing it might seem kinda costly, but I’m going to do everything I can to remind myself, when I’m feeling too cheap to give us freedom, that if I had a car, I’d be paying more for gas, maintenance, licensing, and insurance. Not to mention how much we’ll save on psychological therapy in the coming years for me and Henry. (No agoraphobia allowed!)

So, I’m now looking very forward to going to pilates or yoga classes during the day at our gym like I’ve wanted to for so long. I’m going to make friends here and be a functional member of this community. I’m going to stop using my inability to drive as a reason to feel sorry for myself. I’m taking back at least some of the freedom I’ve unconsciously given to seizure disorder.


On a completely different note, I was approached by an employee of Earnest a few weeks ago who asked me to write an entry on holiday budgeting. Over the course of our emails it appeared that they wanted me to suggest to my readers that they refinance their student loans. They didn’t offer me any compensation to promote them, so my link above exists out of nothing more than goodwill towards someone who may have read one of my entries, but who definitely has a tough job if they’re trying to get sporadic writers like me to pimp their product.

Anyway, I have a ton of tips that I would be happy to share about how I personally save money, but I also have a massive amount of respect for my small and dedicated group of readers. I don’t believe that y’all care one iota about reading about that sort of thing here.  If I’m wrong, let me know, and I’ll happily write it up for you.

Hope everyone’s feeling well, and that 2017 isn’t half the shitshow that the Great Dumpster Fire of 2016 was.

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Out Of Control, And That’s OK

There’s been a lot going on recently that has been anxiety-producing…an unusual amount of mass murder, a trainwreck of a political circus, and, of course, personal stuff.  There are so many things that I would change if I could. The inherent unfairness of life weighs on my spirit.  I desperately want to help make the world a better place — or at least a kinder one… but I am one Rachael. I can only do so much.

I cannot:

  • Stop complete strangers from shooting, stabbing, or running over people.
  • End systemic racism.
  • Fix end-stage capitalism or neo-feudalism.
  • Make the geopolitical landscape either make sense or work the way that I want it to.
  • Force anybody’s political ideals or morals to match my own.
  • Make any decisions about American domestic or foreign policy.
  • Disarm all the nuclear bombs in the world.
  • Make teething less painful for my son.
  • Force the higher-ups at anyone’s place of employment to make wise decisions for the health and morale of their workers.
  • Make it any easier or more fun for anyone to look for a job.
  • Know whether or not the estriol treatment is having a positive effect on my MS.
  • Know whether or not it would be more beneficial for me to get back on Copaxone or if I should try to convince my neurologist to let me try Lemtrada or Ocrevus… or if I should just keep doing Vitamin D and estriol.
  • Know when the optimal time actually is to have a second child. (I have been thinking about this particular question way too much recently.)
  • Make Humana stop messing up my medical billing from over a year ago.
  • Make the muscles in my arms and legs stop randomly, painfully spasming (though cannabis does a good job of quieting it down for a few hours at a time)
  • Cure MS or seizure disorder… or any other medical condition, for that matter.
  • Blow thousands of dollars and hire a full staff.  All I want is a maid, a gardener, a contractor to renovate our home, a nanny, a full-time driver, and an on-call masseuse, so that I can get all the things done that I feel need to be done. Totally reasonable, right?

Panic and despair don’t help anything, and no one else can “fix” life either.

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I recognize that I’m not helpless to be at the effect of these worries and situations.

I can:

  • Meditate and let the fear pass.
  • Exercise.
  • Take all my prescribed medicines as scheduled.
  • Talk with my therapist when I need to.
  • Hold my baby tight, love him with all my heart, and teach him to be compassionate to himself and others.
  • Do as much housework as possible to help relieve some stress for my husband while also showing myself in a clear way that I make a visible difference in the world around me.
  • Make healthy food choices for my family.
  • Comfort friends who are sad.
  • Find a way to compliment or show appreciation to every person I talk to.
  • Make music and art.
  • Share my experiences so that others who face similar challenges don’t feel so alone.
  • Be an ally, an advocate, and involve myself in the community
  • Do my best to both give myself credit for what I already do and still be ambitious.
  • Choose optimism.
  • Focus on gratitude.
  • Consciously look for the good in life.
  • Remember that I don’t have to read my FB newsfeed like it’s my part-time job. I don’t need to internalize anyone else’s stress.

My mantra for the last few weeks has been this, and it’s serving me very well:

doit

 

 

Good Enough.

Well, 6:30 a.m. rolled around this morning, and Henry decided that since Daddy was very obviously awake, he needed to be doing things too.  I would still be cranky about this if not for the fact that he is, mercifully, napping right now, which puts us on schedule for him to attend a Gymboree class at 12:30, assuming it doesn’t rain.

You know, life is funny. When you’re little, you rage against naps and against sleep. Fear of missing out is so strong that you can’t even comprehend why your parents want you to rest.  As a grown up,  I know that what I’m actually missing out on most of the time is… a restful nap.

The irony that I could be taking one right now instead of writing is not lost on me.

Ghosts of the Past

Social media never ceases to amaze me. Several days ago, I got a friend request from someone who used to be my best friend in the whole world.  When I say “used to be,” I mean that it’s been 25 years since I last saw her. We went to elementary school together, and after my family moved to Collierville, for all intents and purposes, I never saw anyone from elementary school again, and I was more than okay with that.

See, I went to a prestigious (read “snobby”) private school.  From 2nd-6th grade, my daily thought processes were consumed not primarily with learning, but rather, with an unrelenting psychological struggle for acceptance. On the one hand, I would desperately try to convince a bunch of rich little girls that I deserved acceptance, despite being of a different religion and socioeconomic background than almost all of them — and on the other, I would desperately try to convince myself that their acceptance was completely meaningless and empty.

In my ideal imaginary world, where I never ended up with MS or seizure disorder, I’d have made my mark by now as a rich and powerful entertainment attorney who also just happened to be happily married, beautiful as an adult, and energetic enough that I could still perform music on the weekends — you know, just for fun.  I could totally talk to the girls I grew up with and be like, “See. I am your people. Aren’t you glad you grew up with me now?”

…but I’m not.

I’m a disabled stay-at-home-mom who writes sporadically and doesn’t wear pink on Wednesdays. Mercifully, I’ve not only come to terms with that, but I’m actually pretty proud of it. It took years to get healthy enough to have Henry, and it takes concerted effort to carve out time to write.

Surprisingly enough, after I accepted her friend request, I found myself worrying about whether or not my life was “good enough.”  I openly questioned whether this person genuinely wanted to rekindle a long-lost friendship or if she was going to be headed to a reunion and she wanted some good gossip for everyone.

A day later, another elementary school classmate requested friendship, and I had to really consider whether or not I was going to accept.  It’s not like this request was from a former bully. This woman was the nicest (and prettiest) girl in class, and I didn’t even have an inkling of bad intention on her part — which really gave me pause.

In that moment, it hit me square in the face just how toxic and deep my shame is over the direction my life took after I was diagnosed with seizure disorder… and I had to figure out both why I was shaming myself and what I could do about it. My life is not a trainwreck people can’t help but stop to look at. It’s performance art.

Turns out that despite all of my years of growth as a person, my inner child is still classist, ableist, and misogynistic. She attended enough ballet classes, watched enough TV, and read enough magazines to know that she’s only pretty if she’s thin, important if she’s rich or in a position to help someone else social climb, and worthwhile as a person if she’s “contributing to society” through paid work, glamour, or widely-accepted art or music.

It’s a damn good thing that I’ve grown past those old ways of thinking as an adult.

So Much More Than Good Enough.

I accepted both friend requests, and I’m glad I did. It’s cool to know that my old bestie and the girl I was most impressed with while growing up actually care to know me as an adult. I’m curious to see who they’ve become too!  We’re all mommies now. That alone changes you a lot.

It’s even cooler to know that the good side of my early-life struggle finally won out. I give zero fucks about what other people think of me at this point. I would actually give negative fucks if that were possible. (Like, my fuck deficiency is so pronounced that I could really use some of yours. I might have to declare fuck bankruptcy.)  I’m also entirely certain that my father, upon reading this, will pump his fist in the air, and think, “That’s my girl.”

What matters is what I think of myself… and my record for awesomeness is pretty good. I’m well educated in interesting topics. I’m relentless in the pursuit of bettering myself as a person. I engage in community service, and I make an effort to have fun too. I’m raising a kid who’s not a little asshole, and my husband still grabs my butt after 10 years.

Altogether, I know that I am more than “good enough” for myself, even if I have to remind my insecure inner child of that. I try hard to be the kind of person I’d want to hang out with. And sometimes, that person needs to be someone who reminds you of how special you are.

I’m happy that these very old friends unintentionally gave me the opportunity to take a good hard look at the life I’m leading. I’m even happier with what I saw… because, really, how could I be anything but happy when I get to see this face all day?

hugabug1

 

And today I’m fine. (So far.)

MS is so weird. One day, I’m damn near immobilized by fatigue and seizures, and the next, I’m feeling great and am having a genuine debate as to whether it’s smarter for me to blog or fold and put away ALL. THE. THINGS. (It can’t be some of the laundry. That’s just not enough. I’m adulting so hard today!)

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Happiness > Folded Laundry

Of course, since you’re reading this, you know what choice I’ve made. Surely, I’ll make a dent in the mountain of clean laundry at some point today, but I felt like writing was a better use of the short time that I have while Henry naps.  Why?  Because writing is one thing that makes me genuinely happy, even if I’m writing about tough stuff… and if I don’t do simple things that make me happy, I have no one to blame but myself.

I think that’s one of the hardest things about being a SAHP (Stay-At-Home Parent, for the uninitiated). It’s way too easy to spend the entire day focusing on your child’s needs and housekeeping and to completely neglect yourself.

If you can sing every jingle from every Daniel Tiger episode, but you haven’t listened to a new release from one of your favorite artists that was released almost a year ago (like this one for me), you just might have your priorities slightly out of whack. (And that’s ok.  Friends help each other. Yes, they do. It’s true!)

If you don’t carve out time for things that make you smile, you can become overwhelmed and sad so easily. Heck, when I first started this gig, I had to set alarms to remind myself to eat (Ok, I’ll be honest. I still use those alarms.) and take showers. (More than 1 a week! It’s important!)

After going back to therapy, this time for postpartum depression, I realized something: I’m doing a fantastic job of challenging automatic negative thoughts… but I’m doing a crap job of giving myself credit for the things I do and an even worse job of having fun.

A thought really struck me hard the other day — Henry is learning how to be a person from watching me.  If I don’t do things that make me happy, I’m teaching him (by example) how to be miserable. We can’t have that. I refuse.

domorehappy

So, I’m gonna keep doing my best to show him that you rest when you feel bad, and you do whatever you can when you’re feeling well.

On that note, I’ll be busting out the guitar this week…finally bringing it out of retirement. It’s been almost a year and a half now since I played. (Baby belly bumps get in the way!)  I’m not expecting that it’ll sound particularly good — but something is so much better than nothing. I’ve been thinking about it for weeks now, and I think he’s finally at an age where I could play it and he wouldn’t automatically try to wrestle it away from me.

Truth be told, I miss parts of my identity from before I became a mommy… from before MS made my life wonky… from before I stopped thinking that I could be and do anything I wanted to do be and do. It’s time for that thinking to end. My mindset is in my control. Self-empowerment is about owning your bullshit and choosing to powerfully move past it.  You can’t be proud of yourself and be mired in self-pity at the same time.

How do you kick self-pity’s ass?  Gratitude and credit.

The Sticker List

Y’all have heard me talk about how important Gratitude Rampages are, and how you can rewire your brain to be more positive by writing down 3 great things that happened yesterday, every day.  Well, we can add another exercise — one that I made up myself that is helping me out loads.  The Sticker List.

What’s “The Sticker List?”  It’s a simple list of everything that you believe you deserve a sticker for.  See, we give kids stickers (or other little treats) when they behave well, in an effort to give them positive feedback and attention so that they will develop good habits. Some kids gets stickers for using the potty. Others get them for brushing their teeth or doing basic chores.

Today, I believe I deserve a sticker because I’ve chosen to write… and I think I probably also deserve a sticker for:

  • changing 3 poopy diapers before noon
  • remembering to take all of my morning meds
  • eating within an hour of waking up
  • not being ashamed of sharing this. 🙂

It’s like a to-do list in reverse… a “Done” list, if you will.

poopsticker

This would be the sticker I would give myself for changing diapers. Have you ever seen such a happy crap?

And, now that I’ve shared this, I actually want to go fold clothes. (Who am I becoming?!?)

Hope you’re all having a wonderful day. ❤