34 Weeks Into a High-Risk Pregnancy In the Wake of COVID-19

Ladies and Gentlemen, let me tell you: there’s never been a more ridiculous time to be anywhere from 3 to 8 weeks away from delivering a newborn.

Only a woman who was diagnosed with and disabled by seizure disorder caused by multiple sclerosis 2 weeks before she was scheduled to take the bar exam could look at this shitshow of a situation and find herself laughing. But, you know, if you can’t laugh at the absurdity of life, you’ll just end up crying. And with these hormones, and the difficult decisions I’ve been faced with, I’ve been doing that too from time to time.

For those of you who are uninitiated in the process of enduring a pregnancy, 34 weeks is damn near done with your pregnancy.  You’re at the point where, if you’re high risk, you have to see your obstetrician every week to check on the baby. If you haven’t packed your hospital bag (I haven’t), you’re behind the curve.  Why? Because you’re likely to give birth anywhere between 37 (early term) and 42 (late term) weeks. And the closer you get to “full term” (39-40 weeks), the more likely it is that you will naturally enter labor. [1]

This is where things get “fun” for high-risk mommies-to-be in this season of imminent doom. While everyone is being told to shelter-in-place to avoid contracting and spreading COVID-19, we are still expected to come to the hospital for weekly check ups for the health and well-being of our babies.

We know, every time we go to the hospital, that it means risking infection, and that even if we’re asymptomatic and otherwise do not leave our homes, we may still transmit the virus to our spouses and/or children.   We also know that every time we go to the hospital, it might be the day where they say that there’s an issue with our little one, and that the baby needs to be delivered immediately. As someone with primary immune deficiency, I am hyper-aware of how likely it is that I will be come infected, and thus wear a N95 mask anytime I’m at the hospital.

For our family, it also means I cannot drop my 4 year old son off at his grandparents’ house and have my husband by my side for any of these appointments. My in-laws (grandmother, grandfather, and great aunt) are in their 60s and 70s, and they have too many medical complications that would mean a higher likelihood of death if any of us were to accidentally transmit the virus to them.

Of course, I also cannot drive because of seizure disorder. My husband is the only person who can drive me the 45 minutes to the hospital, safely. This also means that without any other family living with us, my son has to come along for the ride and wait with him for at least an hour in the car. While I still am allowed to bring my husband with me (as my 1 support person) to the ultrasound test, with the current protections for COVID-19 in place, my son is not even allowed in the hospital to go to the bathroom.

[Edit: Less than 12 hours after I wrote this, I received a phone call from the hospital, informing me that I am no longer allowed to bring my husband with me to ultrasound tests, and that they anticipate in the coming weeks, that he will not be allowed in for delivery or recovery.]

Normally, at 34 weeks, my high-risk obstetrician would have me do a weekly non-stress test to make sure that the baby is getting enough oxygen. Typically, a non-stress test is recommended when it’s believed that the baby is at an increased risk of death because of a mother’s physical condition.[2]

We started the NST process at week 30, but by week 32, the coronavirus had reared its ugly head in Chicago, and processes were changed. Now, we only do an ultrasound to check fetal movement, heart function, and to see if the baby is taking “practice breaths.” If the baby doesn’t pass, I would move to NST, and if that fails, to delivery.  But if the baby wiggles in the right ways, I head home without a non-stress test and without seeing a doctor.

Apparently, I won’t be seeing a doctor until week 36. At that point, I’ll have gone 6 full weeks without seeing a doctor. For someone with seizures, chronic hypertension, and immune deficiency, it is an unusually long time to go without in-person care — longer than any other time during my pregnancy, including first trimester.

When I do finally see a doctor, it’s not going to be the high-risk OB who I have a relationship with. Even though Dr. I was the practitioner my husband and I chose for my care — the same amazing physician who delivered my son in 2015 — he is old, in his 60s at least, and is entirely avoiding the hospital to remain safe from the virus.  So, I will be meeting someone new at the beginning of April, who will, ostensibly, be responsible for helping me to deliver.

Of course, it’s customary around Week 36, whether you’re healthy or not, to be talking with your OB about your “birth plan.” If there’s anything I’ve learned from living with multiple comorbidities, it’s that the Universe laughs when we make plans.  Flexibility is the key to survival (and maybe even happiness) and rigidity to expectations equates only to pain and unnecessary suffering.  Guidance from that lesson is exactly why I’m changing the “birth plan” that’s on my chart.

See, because of COVID-19, partners are not allowed in the operating room if you’re having a c-section.  There’s no PPE (personal protective equipment) for them. To be entirely fair, there’s not enough PPE in the hospital for the staff, let alone birth partners. Things have gotten so bad that my hospital is begging for donations. I will be sewing some masks for them. My only fear is that the fabric I have is too porous — but considering that the CDC is telling nurses to wear bandanas over their one-a-day N95 mask, I figure something is better than nothing.

Anyway, current protocol at the hospital allows for one support person for women who are attempting a vaginal trial of labor (traditional delivery), and even though Dr. I said that there are some very scary possible problems that can occur when a woman goes for a vaginal delivery after a cesarean, I have a reasonable chance of success.

I feel, strongly, that I owe it to my husband to at least try to make it possible for him to be there for the birth of our daughter.  The way I figure it, the most likely worst-case scenario is that I endure the pain of labor until they end up choosing to move me to the OR for an emergency cesarean, which was initially our preference anyway. Arguably, VBAC is a safer bet than a second cesarean anyway, since I only had the 1st one because Henry was breach.  It also would get us out of the hospital 2 days earlier, which, during a pandemic, really matters.

Of course, there are no visitors allowed, and hospital protocol is changing daily. If, suddenly, women are told that they will have to labor on their own (as they are in NYC currently), you can bet your ass I’m going to be signing up for a planned second cesarean in a millisecond. I can withstand pain, but I doubt my ability to withstand the pain of labor without any emotional support.

[Edited to add: Oh yeah! I forgot that they cancelled all labor prep classes, so I’m learning breathing techniques and labor positions from YouTube videos!]

And then there’s other stuff to consider that we had not previously had to deal with: since COVID-19 has made travel unsafe (every gas station and hotel posing its own dangers), my parents cannot come in from Colorado to meet their granddaughter. This also means that they won’t be here to watch Henry. It means for their safety and for ours, I’ve had to ask them to stay home. It feels gross for all of us. I want them here. My mom was going to stay with us the whole first month. But now, my mother worries she’ll transmit the virus to me or the baby… and I worry for her and Dad picking it up in the first place, either on the road, on an airplane, at a hotel, or from us. I couldn’t live with myself if either of my parents died because of this birth.

When it comes time, and I go into labor, what are we going to do with our toddler?  Because of the weekly checkups, I worry infecting anyone who would help us. What family members do we believe are healthy enough that we would ask them to care for him for at least 3 days?  Do we trouble my husband’s brother who has 2 children and a wife who is enduring her own medical problems?  They’re already stir-crazy from the lockdown. Do we ask his other brother who has no kids? He still has to leave the house to go to work at a place with other people who have family members who have been exposed to the virus. Do we pray for the best and leave him with his grandparents?  There’s really no good answer.

And then there’s the existential dread: What if I die giving birth? I’m nearly 40, and according to the CDC, I’m more than 7 times more likely to die in childbirth than someone under the age of 25.  Women aged 40 and older die at a rate of 81.9 per 100,000 births. [3] I’m 39 and a half.

What if I survive labor and delivery and contract COVID-19 while in recovery at the hospital?  As someone with so many comorbidities, would they save me because I’m a new mother? Or would they decide that since I have multiple sclerosis, I’m not worth saving?  My home state of TN has already made the decision that folks with MS don’t deserve to live if they’re rationing care.

And then there’s this nightmare fuel: a NICU nurse tested positive for COVID-19, and now newborns on her wing are being placed in isolation. So, I not only get to worry about me picking it up, about anyone in my family getting it because I’ve got to go to the hospital instead of staying home, but I get to worry about whether or not my newborn will be tended to by a nurse who has it.  And with the lack of PPE, the likelihood of that is significant.

I’ve never, in my life, thought that a home birth sounded sane, let alone safer than a hospital birth… but here we are. And I am not a candidate.

So, for everyone who has hit me up over FB Messenger or text and asked, “How are you doin?”  This is the real answer.  This is what “fine” means.

It means I’m sitting with all of this, and I’m still raising a precocious, headstrong toddler and rationing the food in our home and helping friends whose mental health is failing them because they haven’t spent this many days in one place before.

It means I’m treading these waters while sharing information on Facebook about the mathematic reality of the oncoming storm and while vetting fact-checked, peer-reviewed studies and articles about the virus.  And advocating to free the prisoners in the concentration camps before they become death camps. And sharing funny memes.

It means that literally everything about life is harder and more frightening than it needs to be, not just for me, but for every mother-to-be with a disability while idiots (and by idiots, I’m talking about President Trump) still talk about how this is “just a flu” and that it only affects people who are old or sick (as though our lives are worthless).

It means I’m growing life inside me and protecting it, while privileged idiots like the governor of Mississippi actively work to make our lives more dangerous. While the talking heads on FoxNews act like it’s more important for people to get their hair cut and their nails done than for me to live. While the President tells people we’re going to have to “let people die” to maintain the economy.

It means that every day, multiple times a day, my existence is attacked, and I am charged with the sacred duty of standing up for my right to live.

“Fine” or “okay” is the only word I have for it.  Because “furious” or “disheartened” or “lost in grief” or “hopeless” are not good options for how to be while you’re gestating.  You know, stress isn’t good for the baby. (Really, it’s not. It affects their neurological development and likelihood to experience anxiety as they age.) So, paying attention to what’s going on, while it’s not optional, is also objectively harmful. And I get to feel guilty about that. (But, hey, I’m Jewish, so I’m practiced in this arena.)

So, I try to take breaks and do some yoga. I color and play games with my son. I cook some food. I take a not-too-hot bath. I focus on maintaining good mental health. I call my parents and remind them that I love them, because I never know when it will be the last time. And, for whatever good it does, I pray – not just for myself, but for the safety and well-being of us all.

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.

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!

 

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.”

are-you-not-entertained-24264909

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.

img_9810

 

 

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?