Better Living Through Science: Keto

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

Week 1: “Lazy” Keto

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Recipes That Are Totally Worth It

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

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My Italian sub roll-ups are so freakin good.

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

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

Mulligan.

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

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

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

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

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

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

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

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

Obligatory Title For Posting the Bloggything.

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

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

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

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

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

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

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

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

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

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

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

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

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

The cycle goes

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

(And repeat, ad nauseum.)

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

Hope y’all are having a good day. ❤

It’s Not Cancer!!!

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

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

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

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

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

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

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Uncorked.

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

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

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

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

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

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

New-York-Magazine-Wine

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

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

witches-cauldron-shakespeare-code-drwho-doctor-who-back-when

I name you, Carrier Knight!

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

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

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

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

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

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

 

Taking My Sweet-Ass Time

HAPPY DECEMBERWEEN!!!!! 🙂

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

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

My Immune System Is Very Slowly Getting Worse

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

It’s Probably Because Of My Liver.

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

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

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

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

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

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

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

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

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

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

Wahls Adventure: Stalled

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

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

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

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

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

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

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

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

The Things We Cannot See

It’s been a while since I gave myself license to sit down and write. It’s easy right now because I’m sick with laryngitis, and my mother-in-law has Henry.  After the miscarriage (which took an inordinate amount of time to resolve), I ended up having an MS relapse.  Immediately following the 6 days of oral steroids, I am now sick… so, it’s been a challenge to get basic things done, let alone to opine on the finer points of life. That being said, today is World Mental Health Day, and I write extensively about my mental health, so it seemed like a good time to give everyone an update.

The Banal

Recently, I’ve been taking a second look at the Wahls Protocol.  It’s a diet plan that Dr. Terry Wahls used to help her decrease the negative symptoms of MS.  Obviously, long-time friends and readers know that I tried the paleo diet to improve my MS symptoms and found very little relief from seizures, but some relief from fatigue.  Unfortunately, the number of dishes I created by following the diet used up any extra energy.

In the last month, scientists have discovered the brain’s lymphatic system.  This might not seem like a big deal at first, seeing as how the rest of the body has a lymphatic system, but for those of us with MS, it’s huge.  Essentially, this is not just proof of the immune system interacting directly with the brain, it’s the hardware in our bodies that make it possible. It’s literally part of our immune system, and it’s integrated throughout the entire brain… and until just now doctors didn’t even know it was there.

For those of us who have experienced the terrible side effects of MS disease modifying drugs, it’s galling. There’s something terribly unnerving about reading that “The discovery of the central-nervous-system lymphatic system may call for a reassessment of basic assumptions in neuroimmunology.” Essentially, it means that we’ve all been sold insanely expensive, and potentially harmful, snake oil.  It reminds me of how “bleeding” patients with leeches to “balance the humours” used to be a real thing, which is kind of scary if you think about it.

The first mystery these scientists need to solve is how those vessels receive and dispel fluid, anyway.  They already suspect that the flow of glymphatic fluid (That’s the fluid that goes in and out of the lymphatic system within the brain.) may affect folks with Alzheimer’s or other neurological diseases that disrupt sleep… like MS!

The article states that “The flow of glymphatic fluid can change based on a person’s intake of omega-3 fatty acids…”  And that means that aside from the brain-gut connection, we can find evidence to improve our neurological health by eating well here, too.

I already take 750 mg of Mega Red Krill Oil every day for Omega 3 supplementation.  It’s been helpful for lowering my triglycerides, and I believe that its use in conjunction with Vitamin D3 has been more helpful as an antidepressant for me than Effexor or Cymbalta ever were.

So, I’m looking in to Dr. Wahls’s research and am about to start Phase 1, which is simply adding 9 cups of vegetables a day (3 cups of dark, leafy greens, 3 cups of sulpherous, and 3 colorful.) to your diet.

Whether or not I will move forward to Phase 2 (which includes going on the paleo diet again — but this time using the autoimmune protocol), is yet to be determined. I think that it might be too difficult to try to keep paleo/keto with a 2 yr old in the house who basically subsists on Peanut Butter Ritz Bitz, Goldfish, and cookies. (Don’t worry. I offer plenty of fresh fruits and veg too.)

So, for now, I’m more interested in feeding my mitochondria the nutrients they need to produce energy than I am interested in reducing inflammation in my body by avoiding foods that I may (or may not) have reactions to.

The Sublime

With all of that setting the stage — I have to let you know that it has made me think about the bigger picture.

Back when I was living in California, I got the chance to take a walk and chat with Reichart Von Wolfshield — a notable scientist, and a pretty cool guy to hang out with. During our walk, we shot the shit about atheism vs. being a believer in a higher power.  I was very well aware of his staunch atheism, and he was curious as to why I am a devout believer in God.

He wanted to know why, with a lack of evidence, I am so sure that God exists. My personal take is that everything is God — the whole universe and anything beyond — everyone and everything is a part of this higher power, which is part of why we don’t necessarily notice it. It’s too big to comprehend, and it very likely lacks the sort of sentient thought that we would like to attribute to anything that is omnipotent and omnipresent.

My actual response to him that day, however, was that I know that people are very limited creatures — that we can only see part of the visual spectrum and hear part of the auditory spectrum, and that I simply believe that since the concept of God has existed alongside all of humanity, it must have basis in reality, even if we cannot substantiate it yet with science.

The discovery of the lymphatic system in the brain reminds me why I believe in God’s existence — not because it makes me more hopeful for a cure for my ailment (thought it certainly does), but because 2 months ago, we didn’t believe it existed, even though it did, and even though, more than likely, it was present for of all of humanity leading up to now.

I genuinely wonder what we’ll “discover” tomorrow.

Well, *that* happened.

suckitIt’s been 2 months since my last post.  In part, it’s because of the 12 week rule.  I found out in late July that I was pregnant. I found out last Wednesday that I no longer am.

On the one hand, the outpouring of kindness from my friends and family has been heartwarming.

On the other hand, I’m pretty sure that I don’t have full access to that heart right now.

I don’t want to talk with anyone. I haven’t even wanted to blog. I barely wanted to Facebook. I had no idea so many amazing women, who I genuinely care for and love, had experienced this kind of loss quietly or even silently.  The compassion I’ve showed friends who had experienced this was present, but seriously lacking. I had no concept of the depths of emotional darkness and physical pain that come with this experience. I’m finding it hard to emotionally connect with my husband without turning into a sobbing mess, and that is profoundly uncool because I really love that guy.  We started dating 11 years ago today, and I can’t even think of a quirky way to celebrate it right now.

My brain is, of course, doing what it always does when things go sideways (and man-oh-man, do they go sideways frequently!). Idiot brain is rationalizing all the ways that it’s my fault that the baby died (It isn’t.), berating me for those imagined slights (No, brain, I’m not sorry that I went on an airplane.), and then forcing me to find all the ways that the change in direction is positive.

Here’s why my brain believes I “should be happy” about the miscarriage:
(Name the ANTs!  SPOILER: They’re all “should” statements.)

1.) It means that I can pick Henry up again.  He’s at a phase where he wants to be held or touched almost constantly. Pick him up and put him in the stroller. Pick him up and put him in the swing and then push him. Pick him up to change his diapers. Pick him up to put him on the potty for the billionth time, silently praying that he will eventually take a dump in the toilet. Pick him up to put him in the high chair he’s outgrown, because watching him teeter on our kitchen chairs is too much for my anxiety. Pick him up to move him away from distraction when I have to discipline him. Pick him up to take him off the couch when he won’t stop jumping. Pick him up to put him in his car seat to go anywhere. Pick him up to give him hugs, all the time. Pick him up to dance.

2.) It means that I can take the medication I need to help with MS & PTSD symptoms again.  Yes, I’m talking about weed. I missed the help with the pain in my limbs.  I missed the help with anxiety, especially when Nazi-palooza exploded onto the scene.

3.) It means that I can get Henry potty-trained for sure before we introduce more diapers into the mix. A woman can only wipe so many butts per day without losing her mind. I’m pretty sure he’ll be using the big boy potty like a champ in a couple of months. He already pees in it at least 3 times a day.

4.) It means that we have more time to save money. Kids are expensive. This is also not something that I care too much about. But my brain likes to rattle off anxiety about money, since I’m disabled, so it’s counting this situation as a fiscal “win,” in that sort of way that makes me want to smack myself.

5.) It means I can get back to losing more weight. I dropped 10 pounds in the 2 months prior to this pregnancy, thanks to participation in accountability groups online.  I’ve now been under 200 lbs for 12 weeks. Didn’t even gain 2 lbs in 9 weeks. I’m not sure why I’m proud of that. Anyway, the next pregnancy is more likely to remain viable if I can drop even more weight.  It’s even supposed to help with my GERD issues, since that’s being caused by fatty liver. So, hopefully, once I stop bleeding, I’ll also be able to stop wanting to eat my feelings. (I have had way too much chocolate this week. I cannot actually care. I may buy one more clamshell of brookies before the week is over because they taste like what I imagine feeling “good” is like.)

6.) I wasn’t sure I could handle it anyway.  2 kids? They’d outnumber me all day.  Good luck, “Mom.”  At least now, life is manageable.

But all the sunshine in the world won’t change a turd into a flower.

The shitty truth is that we lost a baby we were all really excited to have — even Henry — even his grandparents.  I’ve been bleeding profusely and in sometimes shocking amounts of pain for a week straight. I’m more than ready to be done with it…

I just really hope the next one sticks, when I get brave enough to give growing our family another chance. I don’t ever want to go through this again. I can’t imagine anyone would.

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?

All the things.

Argh! So many thoughts. So much going in my brain. Unfortunately, it’s not organized, really, so you’re getting a good, ole fashioned Rae braindump.

I woke up this morning well-rested, which almost never happens. I think it’s because of the new strains of medical marijuana that I’ve just gotten access to. (Harmony for daytime, which is a 1:1 THC/CBD strain, and Mag Mile, a heavy indica that puts muscle spasms down, for bedtime.)  Crazy thing, sleeping well because you’re properly medicated!

Even better, I woke up to find out that “marijuana cannabinoids hold the capacity to literally kill the brain inflammation responsible for causing cognitive decline, neural failure, and brain degeneration. ” {story here}  Put plainly, it means that if you have multiple sclerosis and you’re not using cannabis in some form, you’re missing out on something very helpful for you!

I mean, today I almost feel like a normal person who can get things done, even with a toddler. Almost. 🙂 I’m still blogging instead of doing dishes, so…

Anyway. I think the best thing I’ve done recently has been to really look at some of my worst case scenarios in an attempt to fight anxiety. And really, they’re not so bad.

If Trump & party decide to go full Nazi, Canada and Japan are both making it easier for Americans to immigrate. Sure, Adam and I would dearly miss our family and friends, but we started out in Los Angeles, without any of them.  Japan is lower on the list for us, since we don’t speak Japanese yet, and they’re easily within North Korea’s nuclear radius.

Then again, nuclear annihilation is instant and painless. We all have to die sometime. It’s the only guarantee in life. How great would it be to not worry about death hurting? We’d be dust before our pain receptors got the message. And the afterlife? If it’s actually the brain activity that exists after death, there’s no suffering there either, because there’s no brain.

And can you imagine not worrying about who and what you’re leaving behind, and how they’ll be because it all went kablooey at the same time you did?  WHEW.

I mean, it’s fucking dark to think this way, I know — but I’ve been dark as long as I remember being alive. There’s definitely something comforting to me about going out with the rest of humanity… In a really warped way of thinking, it’s kind of a merciful possibility. Nobody would have to deal with calling ScienceCare or planning a memorial for me. Less stress for everyone! (Dead people can’t stress.)

Of course, I’m thinking about this because the POTUS has some serious mental health issues, and North Korea is actively running tests for a first-strike nuclear program.

Oh, and because I read all of the bullshit linked in this blog entry on Facebook, which is both a good thing and a bad thing.

I took a FB vacation for a few weeks in February, and it was really helpful. It let me know that a huge amount of my anxiety comes from reading news that my friends think they should share… but I had to ask myself whether reading that stuff was making me happy or if any of it was helpful.  And the answer to both questions was a resounding “nope.”

My signal-to-noise ratio was all fucked up again.  I was seeing multiple stories about terrible things that I cannot affect every day, multiple times a day (since the stories pop up over and over and over again when people comment on them). Even though you train yourself to just scroll past, it still takes up mental/emotional bandwidth.

So, these days, I only hit FB when the kiddo is sleeping or I’m killing time in a waiting room or going to the bathroom or something.  Whether or not I read about it, antisemitism, poverty, class warfare, fascism, racism, and sexism are going to exist. I’d really rather spend my time dealing with shit I can affect, like potty training Henry. (Pun very much intended.)

He’s really amazed me, picking up potty training so fast.  He’s doing really good about staying dry as far as pee-pee is concerned, but he hasn’t learned how to poop on the potty yet.  I know we’re getting close though, which is both incredibly exciting and a very tiny bit sad. (He’s a big boy! He’s not a baby anymore.)  We need to pick him up some big-boy undies. Right now, I’ve somehow got him snowed into thinking that cloth diapers are big-boy pants. I know it’s not gonna last long. *lol*

Anyway, if you’ve stuck through this entry long enough to get to this point, you totally deserve a picture… because my boy is beautiful, and he makes me smile. I hope this pic makes you smile too. I took it this morning.

Henry 22 mo