Tag Archives: Depression

I’m alright.

Posted in Just Life., Keto Diet, Multiple Sclerosis by

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

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

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

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

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

Banality

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

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

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

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

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

Back on the Keto Bandwagon

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

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

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

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

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

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

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

Not Alone.

Posted in Just Life. by

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

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

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

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

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

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

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

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

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

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

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

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

And then, I was diagnosed with MS.

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

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

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

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

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

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

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

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

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

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

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

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

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

Diet and Still-Not-A-Dictatorship

Posted in Just Life., Keto Diet by

Diet first. It’s easier.

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

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

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

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

Weight as of yesterday morning: 188.1 (Whaaaaat?)

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

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

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Not my sandwich, but very similar looking.

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

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

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

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

But Really Though…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Ke(y)to Happiness?

Posted in Multiple Sclerosis, Paleo Diet, Science, Seizure Disorder by

The other day, I made a comparison chart for 7 diets that I had considered trying or had actually tried in an effort to improve my MS. It ended up getting featured on Modern Day MS, which is pretty cool.

dietcomparisonpt1

.dietcomparisonpt2

I am almost certain that the diet that I need to be on is the traditional ketogenic diet. It’s ostensibly the best diet for overcoming NAFLD (Non-Alcoholic Fatty Liver Disease). This graphic outlines 7 ways that being in ketosis can help you, and I need help with all seven things!  

benefits-of-ketosis-min

Unfortunately, despite my logical brain knowing that this is a good idea, the most of me is absolutely dreading this shift. I will miss the convenience of restaurant food and delivery very much. I will miss comfort foods. I will miss the quiet calm of not having to justify my nutritional choices to others or to myself. (Because, let’s be real, the constant chatter and fretting of Anxiety will happen no matter what, and it’ll do its damnedest to make me question myself every bite along the way.)

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I think one of the hardest things about changing my way of eating at the moment is the fact that I have a precocious three-year-old who survives primarily on Goldfish crackers, peanut butter Ritz Bits, chicken nuggets, French fries, and various fruits. Honestly, reading that, I feel Shame. (“Big S” shame. Toxic shit.) Of course, like anyone seriously considering this diet, I watched The Magic Pill on Netflix, and felt like a terrible parent.

My boy is 39 inches tall and nearly 40 lb. I don’t know that changing his diet is the right thing to do – but, I do know that I will absentmindedly snack on Chex Mix if I’m serving it to him. If I’m genuinely convinced by the science surrounding the ketogenic diet — about it being the optimal way for humans to eat — why would I continue to feed my child a diet that is likely to set him up for type 2 diabetes in the future?

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My little ham.

Why am I so filled with anxiety over justifying these nutritional choices even to myself? Do I just like sugar that much? And, why is it so damn hard for me to just be part of normal society? Isn’t it enough that I’ve got a majillion chronic illnesses? Do I need more social isolation? Do I really have to make my life even more difficult? 

And will it just make life more difficult, or will it actually work?

If it works, it could make things so much better for us. I want to be able to imagine a future free from complications of NAFLD, hypertension, high cholesterol, and depression and anxiety. I’m honestly a little giddy over the thought of raising my seizure threshold. If I actually believe the science regarding how my physical health should improve, then it’s absolutely worth it…

Unfortunately, I have doubts. And it’s reasonable that I have doubts! Scientists sometimes lie for money. I did everything I was told by my doctors regarding diet for most of my life, which meant eating lots of low-fat, high complex carb food, which has, in part, led to the health that I am currently experiencing.

I feel so hopeless and depressed.  Living in a post-fact society, I have no idea who is trustworthy.  I want to feel empowered and excited. I want to inspire you to come of a journey of health and rebirth with me, knowing that the outcome will be stellar and worth the emotional investment.

The truth, however, is that I’m having a really hard time even being motivated right now, and so I’m looking for as many credible studies as I can find. Like these… and these… and this. It’s easy to find pieces challenging it.

My therapist isn’t much help with my depression these days. She says I have all the tools in my tool box.  It’s all up to me.  Well, either it’s all up to me to take the best possible actions or it’s time to find a new therapist, which may also be one of those positive actions, depending on whether or not I’m able to continue to hold myself together. To be totally honest, the idea that I could have “beaten” my mental illnesses sort of cracks me up when I legit had to do EMDR butterfly hugs just this morning.  

Still, I know meditation and my actions are only part of the equation.  Major depression is a biological disease affected by MS and caused by brain inflammation. Oh, and btw, “[p]eople with depression who [experience] suicidal thoughts … exhibit significantly higher levels of TSPO, … indicating inflammation of the brain.” [source] I’ve only visited that thought pattern a few billion times. 

But, guys — guess what is decreased when you’re on a ketogenic diet? Brain inflammation. [source]

So, I will start this diet on Memorial Day whether I feel like it or not.

I am ready to feel better. I want to be happier and lighter-hearted and thinner and to live longer for my boy. I’m just not looking forward to the hard part.

I’m glad to be reading Barbara Applebaum’s book Be Your Own Superhero. It’s really helping me with motivation right now.

—

Also in a positive direction, I have logged out of Facebook in Chrome on my telephone, and I will not log back in. So, now I not only do not have the app, but I have to actively log in on Chrome or open up my laptop if I want to immerse myself in other people’s opinions, problems, and other random bullshit.

I decided I’m tired of putting myself in harm’s way, and with the knowledge that real life is triggering my PTSD on its own, (Thanks, Dominionists!) I don’t need to poke the bear. I want to use my time better.

So, I’m using that time to craft a month-long meal plan with recipes. I’ll have a plan for ~1400 calories/day for me and one for whatever Adam’s ideal calorie count happens to be. I’m guessing ~1800.

Let me know if you want to do it with us. 

A Learning Machine

Posted in Just Life. by

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.

Posted in Just Life., Seizure Disorder by

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.

benny

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.

2016dumpsterfire

#11 is free, right?

Posted in Just Life. by

Looking for Answers

Welp, the ultrasound didn’t show any stones… but it did show fat deposits on my liver. Now, I have to go get an MRI (w/ and w/out contrast) of my liver so that my gastroenterologist can figure out whether or not I have nonalcoholic fatty liver disease. I’m 99% sure that I have it, because it would explain the pain in my upper right abdomen… and if I don’t, then who the fuck knows. I’m all about some answers.

For those of you playing along at home, this is my current medical condition.

  1. Multiple Sclerosis
  2. Seizure Disorder
  3. Hypertension
  4. High Triglycerides/Cholesterol
  5. GERD
  6. Gastritis
  7. Colitis
  8. Postpartum Depression
  9. PTSD

I joked with Adam that NAFLD would be #10, so my punch card should be full and #11 will be free.  He didn’t laugh. Probably because I haven’t made a punch card yet… but I might, just to keep myself laughing. I keep looking on the bright side. No stones means no gallbladder surgery.

The first line of treatment both for high triglycerides/cholesterol and NAFLD is to lose weight, a minimum of 10% of total body weight over 6 months. (So, for me, that would be 21 pounds.) In theory, that’s totally doable.  I honestly would *love* to lose weight.  I’ve been trying for years now with no success.  It doesn’t matter if I’m on the paleo diet or not. Or if I’m active or not. Or if I’m both paleo and weightlifting.  Even pregnancy didn’t change my weight by more than 15 pounds.

Fortunately, at the beginning of May, I’ll actually finally be seeing an endocrinologist, and hopefully, she’ll be able to help me figure things out.  I mean, someone’s got to be able to help.  I don’t want to die from a heart attack (triglycerides/cholesterol), a stroke (hypertension), or liver failure (NAFLD) – all of which are caused by my being overweight. I’m willing to do whatever’s necessary.

In the meantime, Adam and I are getting back to the gym starting today. Being active never hurts. We took about a month off because Adam burnt his hand terribly on a hot pan, and I was having tons of seizures because of tummy troubles and hormone imbalances.  I’m not expecting magic or anything, but I’m really looking forward to just going for a 30 minute walk on the treadmill if nothing else. I hate being as sedentary as I have been. I’m tired of my tummy hurting, and I’m tired of feeling gross.

12963873_10209025515017754_2491198053406512411_nOn a totally different note…

I was lucky enough that my mom came in for 10 days to help out and hang out with me and Henry while Adam was in and out of town for work.  I always appreciate my mom’s help, and am honestly flabbergasted at where she gets her energy.  To be honest, I’m ridiculously jealous. The lady’s 22 years older than me, and runs circles around me. She cooks and cleans and gets on the floor with the kiddo and doesn’t bat an eyelash…whereas I have given myself numerous mental high-fives just for remembering to transfer the laundry last night.

She also takes great pictures of her grandbaby. Here’s Henry in his Graco Bumper Jumper. He’s too tall for it, but he still can’t get enough. I’m really looking forward to Mom and Dad putting together his rocking horse for his birthday.

Celebrations

Speaking of… Adam’s birthday is tomorrow and Henry’s birthday is in 2 weeks, and I really haven’t done anything to prepare. Yes, I bought Adam a present, but he already got it – so that’s sorta anticlimactic.   And as for Henry… I have got to get my shit together.

Ilovetrash

Patterned tableware is 50% off at Party City right now.  I just have to force myself to stop being such a lazy curmudgeon. I’m like, “How the fuck are these paper plates this expensive even when they’re on sale? I can get 100 plain white paper plates for the cost of 8 of these ‘Wild at One’ plates, on sale.  Why do we need a tablecloth and paper cups?  Will he even CARE if I make him a smash cake? He can’t eat solids other than purees yet, and he won’t have any memory of it… It’s all just gonna be garbage!”

And then I have to remind myself that this is 100% postpartum depression talking. It’s the same inner voice that has dealt out other helpful advice such as, “Henry and Adam would have more money and be better off without you. You should just kill yourself.” I don’t listen to that voice. I treat it like the mental flatulence it is – odious and ephemeral.

Equally ephemeral… the quiet solitude of naptime.  Kiddo’s been down for almost an hour, so I’m gonna see if I can get a few things done before he stirs, and it’s time for me to feed him lunch.

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My one real talent: Getting Henry to sleep. 

 

*waves*

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

Hey there.

Life’s been crazy. I have been writing – just not on this blog. I’ve been writing here.

modern-day-ms

Here’s a link to my most recent stuff.

I was actually just featured in an interview on that site yesterday.

Love That Hugabug!

hugabug

Henry is growing like crazy. 10 months old, wearing size “18 month” clothes. He’s babbling all the time, blowing raspberries, and pulling himself up on furniture. He’s so close to walking that I’m trying my best to appreciate how easy it is to keep up with him these days.

I’ve started working on planning his 1st birthday party, which will be a joint party with his Grandpa (my dad), since they share a birthday weekend.  I think I’m actually more excited about my parents, my brother and his awesome wife coming in town to celebrate than I am about the fact that we managed to make it a full year without accidentally killing our beautiful, amazing baby. Being a parent is hard, yo.

I’m a mess, but I’m doing my best.

My health has been frustrating and upsetting, so I’ve been doing my best to minimize the struggle while responsibly handling it.

I believe I had an early miscarriage a couple of months ago. I’m usually very regular, but had a couple of very faint positive pregnancy tests and then didn’t bleed for 50+ days.  When I did get my period, it was the heaviest, most awful period I’ve ever had.  Dr. Dad thinks I might have just missed a period. He said it happens all the time, and not to worry about it. Adam has decided Dad’s right, so I’ve jumped on the “don’t mourn something that never was” bandwagon with my conscious mind and have been dealing with terrible depression and nightmares because of the choice to repress my feelings of guilt and sadness. I see my therapist on Saturday, thankfully.

Of course, just afterwards, I had a MS relapse, complete with tons of seizures, neuropathic pain in my legs, muscle spasms, and tingling/burning on various parts of my back. A medrol dose pack seems to have done the trick to quiet most of it. Come to think of it, it’s been almost 6 years without a drip — so that’s pretty good, I guess.

My stomach is still up to its shenanigans, reminding me after almost every meal that eating is not a good idea… and that’s despite my gastroenterologist doubling the amount of Prilosec I take. I am scheduled for an upper and lower GI scope on St. Patrick’s Day.  (Fun, right?)

After 2 years of not seeing a dentist for a myriad of reasons, I finally went in for a cleaning and exam. I have 2 cavities to get filled this month as well, in 2 separate visits.

I honestly don’t remember the last time that I went to the gym to work out (though I did see a nutritionist), and today, I’m fantasizing about finding a chiropractor because my neck is super-sore from my head dropping thanks to seizures. Unintentional headbanging FTW. Honestly, I’m tired of hurting. Apparently, not tired enough to use my foam roller, but just enough to think about it and then whine to myself you.

cantwin

The bright spot in the health area is that I finally got glasses.  They’re cute and helpful. I had no idea how badly I needed them!  I now look forward to the day when Henry stops wanting to rip them off my face and throw them. I’m sure that will eventually happen someday.

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Anyway, that’s all for now. The little one is stirring, and I need to change and feed him.  Hope you’re having a good day! Be well!

Slightly more effective than whining to myself.

Posted in Just Life. by

A long time ago, I started keeping a journal online. Back in 2001, LiveJournal was all the rage with the group of friends I had made during high school. I loved it. I wrote all the time, about any little thing that came into my head, and so did most of my friends. I was always excited to read what they had written because it made me feel close to them, even though we were miles apart from one another.

I kept that online journal through the end of college, through my entire first marriage, and even through law school.  That blog was responsible for me making some of the best friends I’ve ever had, as well as learning a lot about myself, mostly because I had absolutely no verbal filter on there whatsoever. I never considered how I was publicizing my emotional garbage or how it affected anyone else. I just wrote — raw and honestly. And there was a sort of freedom in that. A kind of validation that I was able to give myself. It was proof that what I thought and how I felt mattered. I miss writing with that kind of abandon, but I also value the restraint that I’ve learned to have with my words.

Words can hurt or they can strengthen. They can inspire and they can thwart dreams.  They can foster intimacy, and they can degrade reputations. Words have power. But so does silence. And when I’m silent, it usually means I’m either terribly busy or that something’s wrong.

Over the years, I’ve chronicled some serious stuff here. Some deeply painful emotional growth, struggles with disease, diet, mental health and, sure, even some random bullshit. But at least I was writing.

These days, with a 3 month old, it’s hard to do much of anything. It’s hard to get restful sleep. It’s hard to remember to eat full meals. It’s hard to go to the bathroom without feeling guilty, to remember to brush my teeth every morning, to shower regularly. But mostly, it’s hard to be creative.

It’s both hard to find time to write, and harder, when I get some “free” time, to find the words to discuss what’s on my mind without breaking down and crying.  The only way out is through, and someday, God-willing, I’ll feel like myself again. I just have a feeling it’s going to take a lot of effort.

And, yes, I’m very well aware that this is textbook postpartum depression. I’ve seen my therapist, and she’s basically said that I’m handling it as well as anyone can.  She said that PPD creates ANTs (automatic negative thoughts) on steroids. To be clear: I’m not actually the worst mother ever, ever.  But we all knew that. Postpartum depression has been written about exhaustively.

You know what hasn’t been written about?  How totally shitty it is to be a decent writer and to be reading absolute garbage to your kid repeatedly.

Every day, I read books to my beautiful son. He loves them. His eyes light up, and he smiles the moment a book comes out.  He doesn’t light up when I bring out my laptop and read stories out loud. He actually cares about the paper in my hand, and his happiness makes me smile, so I spend a lot of time flipping pages and accidentally giving myself paper cuts.

Sadly, these books are terrible, people. They’re 5-10 pages long at most, and each page has maybe 2 lines. More often than not, those lines rhyme in a sing-song fashion.  And beyond rhyming, they teach basic stuff that in today’s day and age don’t matter one iota.

Who cares that the cow goes “moo?” when you’re more than likely never going to spend any time whatsoever with a cow? We are not an agricultural society anymore. Why are we teaching kids about livestock?

Why, if you’re reading about “all the thinks you can think,” would you challenge a baby to imagine places and things that don’t exist (and never have), when they’re still trying to get a basic grasp on the world around them?  I mean, he doesn’t even know what “blue” means yet. I’d love to challenge him to imagine a lake rather than “a day in DaDake.” He doesn’t know what “day” is yet. But who’s allowed to rip on Dr. Seuss? It’s blasphemy. The guy was a genius, and most of his books are amazing. I guess I’m lacking proper respect.

So, yeah, I find myself getting irrationally angry and frustrated with children’s baby literature, but even more irrationally angry with myself.  I am constantly thinking, “I could write something better than that!” And yet, when I sit to write something, I think the most unhelpful thoughts – like “What if this has been done already?” or “Am I wasting my time? I could be making myself something to eat. Is this a good use of my time?”

It’s a sort of writer’s block that I can only compare to how I have dealt with music.  And I’ve dealt with music very, very poorly. I mean, I graduated from Berklee College of Music and studied voice, but I don’t perform with anyone, anywhere, ever. It’s not like you can go to karaoke when you have a newborn, and when I sing at home, I have a hard time silencing my inner critic. WTF is that about? Not helpful, ever. It’s not like Henry has anyone to judge me against or that a 3 month old would have the audacity or even the ability to be shitty to a mom singing him lullabyes.

And God help me if I consider spending any time with my piano or guitar. Even before I’ve tried, it’s like, “Have you ever taken a lesson in your life, Rae? (Only several years worth.) Not sure why it’s like I don’t know a damn thing.” I don’t have any idea what I’m actually afraid of, but it legit feels like panic and fear. I remember sounding bad for years to get to sound good. Why should I be so impatient with myself now?

So, yeah, I’m creatively constipated. That’s the only way I can describe it. I desperately want to make music and write new songs. I wholeheartedly want to create children’s books that Henry will find helpful and that will show the world that there’s some value to my existence… but I can’t seem to do shit. (Pun intended.)

At least, I can blog while my husband and child sleep.  Because blogging is basically whining to yourself. You just happen to let the whole world see it, and that accountability counts for something. It’s not high art, but it’s a damn sight better than being silent.

Mostly Better

Posted in Just Life., Multiple Sclerosis, Seizure Disorder by

It’s been a week. My last entry happened on a day when I had more than 20 seizures. I’ve learned that if I’m that incapacitated by seizures, I’m definitely having an MS relapse. I called my neurologist to follow up, and he called in a medrol dose pack on Friday afternoon. The effect was damn near instant. Thursday: 20+ seizures, Friday prior to meds: 13 seizures (I took the first day’s worth after dinner), Saturday: 0 seizures. NONE. Not one.

I wish I could say that I haven’t had any since Saturday, but that wouldn’t be true. Yesterday I had a couple, but they were simple partials (facial twitches), so I’m not worried about them. I’ve come to the point in my experience having seizure disorder where 1-2 simple partial seizures a day doesn’t feel like any big deal to me at all. Today, so far, I’m good. Maybe that means that tomorrow I can get back to the gym. I’d really like that.

Doing The Right Thing

Sometimes, I do the right thing without even realizing that I’m doing it. It always makes me smile when that happens. Take that letter that I wrote myself last week, for example. Apparently, science has proven that writing yourself compassionate letters is good for your mental health. It stops you from ruminating on the negative and allows you to take positive action. (Like taking a much-needed nap!)

Today, I’m doing my best not to ruminate on an irrational concept that a friend brought up in reference to herself. She said that she didn’t want to live a mediocre life.

A Mediocre Life? There’s No Such Thing.

For whatever reason, reading the phrase “living a mediocre life” felt like a punch in the chest. The idea that I might be living what she considered to be a mediocre life stuck in my craw. What upset me worse was the idea that I might think that I’m living a mediocre life.

I mean, I spend most of my days alone in an apartment, doing household chores and participating on social media.  It’s not exactly the stuff of legend.  Back in the day, before seizures, I used to be much more social and was very career-driven. But does a change from that way of being mean that my life is second-rate or ordinary? Since when has anything about me been ordinary?

Truth be told, I spent a significant amount of time in therapy wrestling with the question of why I’m even alive, if I’m not doing anything important. The answer to that question was remarkably simple: Because it’s better than the alternative! And, besides, how am I supposed to accurately know what is or isn’t “important” in the grand scheme of Life, The Universe, and Everything? That requires a level of objectivity that no human can possibly attain.

So, sure, I’m not living life the way that I had hoped for myself. So what? What person living with a chronic illness is? Hell, I’d go so far as to wager that no one is! We all deal with shit being thrown at us that we neither expected nor wanted, and we deal with it. Does living a life that is different from the one “of my dreams” mean that my life is inferior, insignificant, or of poor quality?  No, it doesn’t.

Just Because You’re Not Living The Life Of Your Dreams Doesn’t Mean You’re Not Living Well.

There’s so much pressure in our society to stand out and be considered important, and it’s totally unnecessary. It comes from our constant consumption of narratives: TV shows and movies and books. And most of these narratives are fictitious. In real life, we’re each the protagonist of our own story, but none of us knows the whole story because it’s constantly unfolding before us.

Hell, the US military even capitalized on this idea by asking the question, “If your life was a story, would anybody read it?” in recruitment ads. It’s such a silly way of thinking. Comparing stories from our lives with other people’s stories based on entertainment value is fruitless. It’s a directive for misery. There will always be people who have it better and those who have it worse. There will always be people achieving more and those who aspire to far less.

I mean, let’s take a step back from the question of “Is my life mediocre?” and ask an even more important question: who’s judging? Society? The media? History? Why should I care what anyone (other than me) thinks of my life? I’m the one living it, and I’m proud of who I am. That’s what studying Tao is all about: the idea that your path is unique to you, and that you can’t do life wrong.

If we must put ourselves up for judgment, I think it’s better to focus on a set of objective metrics.

  1. Do you do something to learn and grow as a person every day?
  2. Do you engage in activities that contribute positively to your community, such as philanthropy, charity, or advocacy?
  3. Do you treat yourself and others with kindness, compassion, and respect?
  4. Do you make an effort to use your unique talents when you’re able to?
  5. Do you take time to express gratitude and to appreciate the people and things in your life?
  6. Do you share your knowledge with others? Everybody knows something you don’t! It’s one of humanity’s greatest gifts!
  7. Do you make an effort to be empathetic and honor the experiences of others?

I think that if you can say “yes” to those questions, then you’re living a life you can be proud of.  And to be honest, even if you can’t answer “yes” to all of them, it doesn’t mean that your life is mediocre.
 

Shake It Off

Today’s earbug is a pop song by Taylor Swift. I usually don’t like her music, but I’ve had this song stuck in my head for a few days, and it works with the theme of today’s post. I hope it makes you want to shake your booty too.