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. ūüôā

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

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

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

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

Fixed Mindsets Waste Gifts

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

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

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

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

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

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

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

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

The Gift Of Disability

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

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

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

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

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

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

What are YOU struggling with today?

Well, duh.

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

smart-vs-dumb

Gorgeous, either way, though, right?

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

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

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

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

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

Out Of Control, And That’s OK

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

I cannot:

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

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

relax

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

I can:

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

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

doit

 

 

Good Enough.

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

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

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

Ghosts of the Past

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

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

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

…but I’m not.

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

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

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

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

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

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

So Much More Than Good Enough.

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

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

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

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

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

hugabug1

 

And today I’m fine. (So far.)

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

fold

Happiness > Folded Laundry

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

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

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

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

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

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

domorehappy

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

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

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

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

The Sticker List

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

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

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

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

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

poopsticker

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

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

Hope you’re all having a wonderful day. ‚̧

 

#11 is free, right?

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.

12931135_10209025514217734_1111931706695910258_n

My one real talent: Getting Henry to sleep. 

 

*waves*

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.

12802977_10153932000039522_8111415572072856692_n

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!

Do It Anyway.

My drooly dragon on Halloween.

My drooly dragon on Halloween.

Hard to believe it, but Henry’s 6 months old now. ¬†Right now, I’m lucky enough to have a moment to write because he’s taking his morning nap.

Today, I was published on another blog — Modern Day MS. I wrote a piece about how to improve your sex life, since the great majority of folks with MS have to deal with sexual dysfunction at some point.

Surprisingly, the hardest thing about writing that guest post was keeping my word count down! ¬†There was so much more I could have written about because, let’s face it, there’s a lot of great information out there about having good sex.

One thing that surprised me was how much it helped to have a specific audience to write to, though. I think one of my downfalls here on In It For The Parking is that I have made this much more of a personal journal and much less of an MS-centric blog. ¬†Ah well. If I cared about making money from my blog it might matter, but I don’t. It’s not why I write here.

So About That Title…

You may have noticed that the title of today’s blog entry is, “Do it Anyway.” It’s the title of one of my favorite Ben Folds songs, and has become a huge part of my current way of being.

Being a mom is tough. It’s especially tough when you have seizures and sometimes don’t have an aura. It can be really scary.

For years — way too many years¬†— I spent my days on the couch and didn’t do a whole lot because I was afraid of hurting myself. I didn’t cook. I didn’t exercise, for fear of falling off a machine or embarrassing myself. I didn’t leave the house without someone else. ¬†It’s only in the last 2 years that my seizures subsided enough for me to be brave enough to go out in public alone.

And now, as a mom, sitting on the couch and hiding from life really isn’t an option.¬†So, I take the kiddo on walks to and from the store. I carry him up and down stairs. I have begun cooking again, and today, I think I might even be brazen enough to try to shower while my husband’s at work. (It smells like a good idea.)

There were a lot of people who asked me why I wanted to have children, and whether or not it was safe. They suggested that it wasn’t a good idea because they were worried about how I would take care of the kids and deal with my condition. ¬†My response to them was always that I wasn’t going to let MS steal motherhood away from me. ¬†So, even with all the fear, we did it anyway.

Why? Because one of the biggest, most important things I’ve learned is that even if you’re afraid, you need to do things anyway. ¬†Sometimes, the more afraid you are of something, the more important it is that you do it. ¬†That’s why bravery is a virtue.

Do I seize when I get overheated? Yeah, every time. ¬†But the dishes? Those need to get done anyway. And this body? It doesn’t like carrying this much extra weight, so exercise is going to happen.

Don’t get me wrong — I’m not trying to cause seizures. I’m learning how to do things despite them. ¬†For instance, it’s safer for me to swim (because it keeps your body cool) with Adam than it is for me to try to run on a treadmill. It’s safer for me to soak dishes in the sink and rinse in tepid water before putting them in the dishwasher than it is to use hot, soapy water. And it’s safer for me to keep the house at a crisp 68 degrees and only carry Henry for a few minutes at a time than it is for me to be afraid to pick him up.

For a long time, I thought that Kayla Montgomery was insane. ¬†I mean, who wants to run races and trigger pseudoexacerbations over and over again, falling into her coach’s arms at the end of each race, just so she can keep running? ¬†It sounded insane to me. But now, for some reason, I get it. She knows that someday, she’s not going to be able to feel her legs. She’s making the most of every moment she has control of them, and refuses to let this disease take any more from her than it absolutely has to. ¬†And that takes a lot of guts.

I’m more than a little ashamed to think about how much time¬†I wasted because of fear. ¬†Sure, it was legitimate fear, but it was also depression. It wasn’t just that I wouldn’t push myself, I couldn’t. After failing the bar exam twice, I didn’t see the point of trying anything anymore. I didn’t want to¬†find my physical boundaries, because I didn’t want to get hurt.

But, that’s pretty much what life is — getting hurt and getting over it and learning new ways to be… over and over again.

I’m tired of the internet being my only social outlet (aside from seeing my in-laws). I’m tired of defining myself¬†by this disease. I’m tired of wallowing in how tired and/or afraid of seizures I am to the point that I allow myself to not be ambitious. It’s a waste. Not only of my potential but of the time I have here to enjoy life.

So, I’m fucking tired and scared. That’s great. It means I’m human. Big deal. Do it anyway;¬†whatever “it” is. Acknowledge the fear and move forward thoughtfully.

Today, “it” is writing this blog entry and doing whatever I can to get up and be active. I can’t let my son learn that being an adult is comprised of sitting on your butt staring at a screen all day long every day. I won’t. Unfortunately, we can’t go to the gym today because the little guy is sick, and they’ve got rules against bringing sick kids to the gym. ¬†So, I think I’m gonna walk¬†to the store and get stuff for dinner and return a toy that I wish I hadn’t bought. (Toys with lights and sound aren’t always the best idea. Gotta find the right ones.) ¬†Don’t worry, I always wear my medical alert bracelet and have an ICE app on my phone in case I seize in public.

If, at some point today, I’m able to vacuum the living room, make the MRI appointment I keep postponing because I’d rather not know how¬†my MS has¬†progressed without DMDs, and find a good dentist in the area, I’m giving myself all kinds of bonus points. Mostly because I don’t want to do any of that, but it all needs to be done.

So, I’m going to do it anyway.

Do-It-Anyway

Maintaining a Happy Marriage with MS

I spend a lot of time online, engaged in MS support groups. ¬†Recently, there has been a theme in some of the groups that I find upsetting — and that theme is complaining about husbands/caregivers. ¬†The women who engage in this think that because it’s a support group, they can complain about their partner without any sort of judgement or negativity coming their way, and oftentimes, they’re correct. ¬†These are support groups after all, not group therapy sessions.

My most frequent contribution in discussions like these is to suggest couples counseling, but, on the other side of the screen, I’m almost always thanking God for my husband, Adam, and thinking about all the things we do to make our marriage work while enduring MS together.

Truth be told, Adam has taught me a lot about the meaning of unconditional love, teamwork, and intimacy.  I think one of the best ways I can repay him for that is to share some of his lessons with you.

How to Have a Happy Marriage With MS.

1.) Make MS the third wheel that it is.

notyourdiseaseI love Adam, and Adam loves me. But we both hate MS.

He’s seen what it does to me more than anyone else has. In fact, he was holding my hand when the doctor gave me the diagnosis. ¬†He has reminded me, innumerable times over the 8 years that I’ve had this disease, that I shouldn’t internalize or own this disease. MS is not a part of who Rachael is. I didn’t ask for it. I didn’t cause it. I don’t want it. He reminds me that if it were a head cold, I wouldn’t apologize for having to take¬†medicine or needing to rest. ¬†He doesn’t see it any differently.

So, when I tried, several times, to push him away while we were engaged so that he would leave me so that he wouldn’t have to deal with having MS, it was silly to him. Neither of us want MS in our lives, but neither of us can imagine life without each other.

Who you are is how you react to the challenges that MS throws in your way. You are not MS. And to have a happy marriage, your partner needs to know that.  They also have to help you fight it.

2.) The Golden Rule Is ALWAYS In Effect.

GoldenRule-2Did your partner leave dishes in the sink, or even all around the kitchen? Take a moment and think before you gripe at him or her about it. Would you want to be chided for not doing chores? Of course not! So just do what needs to be done, and allow them some grace.

The same thing goes for allowing grace within your relationship for hard times caused by¬†chronic illness. ¬†Would you want someone to put you down for not being able to work? ¬†Of course not! ¬†You’d already be wrestling with shame yourself. ¬†So, don’t make your disabled¬†partner feel worse¬†about themselves.

This doesn’t mean, however, that you should be a doormat or be doing all the work all the time — which brings us to #3.

3.) You Are A Team. Act Like It.

nowinnerWhen you got married, you started a family. ¬†It’s you and your partner versus the rest of the world. Even the law acknowledges that spouses cannot be forced to testify against one another because it would be like testifying against themselves. In community property states, they have codified the idea that “what’s mine is yours” in marriage.

So don’t ruin your intimacy and happiness by playing tit-for-tat games or being¬†consciously¬†passive aggressive. ¬†You don’t help yourself or your partner when you start comparing things between the two of you or expecting your partner to read your mind. Ask for the things you want, and give of yourself to them generously.

4.) Engage In Good Self-Care — Both Of You.

selfcareThere have been times when Adam has told me that the best thing I can do to make him happy is to make sure that I am safe and am taking good care of myself, because it means he doesn’t have to worry about me when he’s at work.

As someone who deals with MS and seizure disorder, it’s my job — my #1 job — to minimize the effects this illness has on me and my family. ¬†It’s Adam’s job to support me in doing so.

This means that I make and keep regular appointments with my various doctors (and he helps me get to those appointments and to remember what the doctors have said), set alarms to remind me to take my pills on time (and he follows up to see if I have taken them), do my best to eat healthfully (and he joins me in the effort), get regular exercise, meditate daily, and talk with a therapist when I need to.

Adam takes good care of himself too, maintaining his health, acknowledging when he needs to rest, and calling friends and family when we need extra help.

When you take the time to take good care of yourself, you make things easier for your partner, whether you’re the one with MS or the one who is a caregiver.

5.) Practice Gratitude.

spousegratitudeOne of the things that I¬†am acutely aware of is how much Adam does for me. ¬†This is not because he has said to me, “Do you realize I’ve done XYZ?” but because life runs so smoothly.

I know all the things I want to do to help out around the house and can’t always get done because of fatigue or seizures, and I acknowledge how much work goes in to all the things he does to keep our family comfortable. ¬†He works full time. Most nights, he cooks dinner. He runs all the chores that require a car. And I honestly can’t remember the last time I took out the garbage.

Every night, just before we fall asleep, right when we’re cuddling, I make sure to thank him for at least one thing that I can think of that he did that made my day better. ¬†Sometimes, it’s as simple as, “Thank you for making a delicious meal.” and other nights, it’s more like, “Thank you for working so hard, for so many years, that we were able to save up and buy a house.”

Our marriage is happy, not just because I recognize all of his hard work, but because his response to me is almost never just, “You’re welcome.” Most nights, he’ll¬†thank me for something specific as well or to let me know that I had a hand in his success.

Does he need the praise? Probably not.  But he deserves it, and taking the time to show appreciation to one another goes a long way during times when things are difficult.

6.) Foster Intimacy

A big complaint that I hear a lot about in support communities is the lack of sex that happens when you have MS. ¬†Let’s be real here — there’s nothing sexy about fatigue or numbness or pain or cognitive fog. ¬†So we have to work harder to keep any kind of passion in our relationships.

You can’t fake the funk when it comes to sexytimes. If you do, you get caught up in the bad sex loop. ¬†You force yourself to have coitus. You don’t enjoy it because you’re too busy thinking about how your body feels or how uncomfortable you are with the situation. Then the next time you’re ready to get busy, you worry it’ll be bad this time because it was bad last time, because you couldn’t stop thinking about all of the things. The bad sex loop is treacherous. And it doesn’t just hit folks with chronic illness. ¬†Even Coupling¬†acknowledged The Melty Man.

So, take the pressure off, and quit focusing on your illness. ¬†Even perfectly healthy couples go through dry spells. Heck, maybe you just had a baby and are healing from a c-section. That’s 6 weeks of mandatory celibacy!

There are all kinds of things you can do – from backrubs to breathplay, phone sex to making bucket lists together – the options for improving intimacy are damn near endless, and there are a ton of articles with suggestions to help you out.

7.) Refuse To Give Up

galaxyquestLastly, and perhaps most important is honoring the commitment you made to one another.

People grow and change with or without illness as a complicating factor in a relationship.  It takes two people working together to make a happy marriage. It only takes one partner working against it for it to fail. You have to both want it. You have to have both meant it when you said that you would be together for richer or poorer, through sickness and health.

Sometimes, this means that you need a marriage and family therapist to help guide you back to the relationship that you want and deserve. ¬†There’s no shame in that.

Othertimes, you just need to step back, take stock of the situation, and correct from there. I personally am a fan of the Gottman method, and think if you’re looking to improve your relationship, it’s a great place to start.

—-

To my darling, wonderful, patient, hilarious, warm, helpful husband: thank you for being the inspiration for this post. I love you more than human thought can comprehend, and I can’t wait to see you when you get home from work tonight.

And to my sweet 4 month-old baby boy, thank you for napping long enough for me to write this. ‚̧

A Really For Really Real Entry.

Let’s try this again.

logoutToday, I’m trying to get back on track doing the things that make me happy. Blogging is one of those things. Singing’s another. And truth be told, I am really missing the gym, even though right now I can’t walk for more than 20 minutes without being in pain. (What can I say? 3rd trimester is no joke.)

I’ve been spending an inordinate amount of time surfing Facebook and sleeping. I’ve come to recognize that when my day looks like, “Wake up, eat breakfast, check emails,¬†surf FB, eat lunch, surf FB, nap, do some laundry, eat dinner, watch some TV (often while also surfing FB), go to bed.” that I’m doing it wrong.

That’s not to say that by sitting here and writing a blog entry that I’m breaking out of the “sit on the couch on the computer” habit very quickly¬†— but every moment I spend doing something productive, as opposed to reading about strangers problems cloth diapering or raising their children is a moment that I feel like I’ve earned¬†back.

That being said, I’m grateful for the truly staggering amount of knowledge I’ve gained in the last month or two about how to deal with¬†cloth diapers and fussy babies. I have no doubt that the time I spent reading will be helpful, even if I don’t have a book to show someone.

Truth be told, that kinda pisses me off. At least when you read a published parenting book, you can be like, “I read parenting books.” ¬†It’s like getting a gold star for having done your homework or something. Instead, every day, I’ve been reading countless posts by frustrated parents who can’t get their diapers properly clean or whose kids are having what they consider to be behavioral problems and the responses that helpful members of the parenting community have given them.

easytillyouhavekidsOf course, there were parents in these communities who I’ve very badly wanted to smack.

No, random gentleman, wearing a princess costume is not going to “turn your son gay” — and if your 2 year old son happens to grow up to be gay, ¬†you should accept that and love him anyway for who he is. You don’t get to publicly be mad at your wife for letting him get into his sister’s toy chest without people thinking you’re an idiot. She didn’t do anything wrong. I hope his sister got into her little brother’s¬†toys too and is happily exploring the wonderful world of Bob the Builder. I promise that being proficient with tools will not make her crave vag.

To the paleo-crossfit-full-time-career-control-freak moms (who I definitely¬†would have become without seizures): One of your kid’s classmates is going to bring shitty snacks to some event. Probably more than one. Odds are, at school or daycare, your kid will eat something with grains and refined sugar or high fructose corn syrup. I assure you, they will survive, and you really don’t need to take the time to write a strongly worded letter to the mother of the offending classmate. ¬†One afternoon with Goldfish crackers and apple juice isn’t going to ruin your child for life. Ain’t nobody got time for the drama that letter would create. Go lift and release that stress. ¬†There are bigger fish to fry in natural, non-hydrogenated oils.

And every one of you parents out there who is actively complaining about feeling “poor” when you make more than $250K/year and own¬†a house – or those of you who are frustrated and feel entitled to loudly complain and dock pay¬†when your nanny can’t come¬†in to work after a 20 inch snowfall when many of the streets haven’t been plowed and the windchill factor is below -30 – all y’all can seriously just go cry in the corner. ¬†Join the parents who are publicly bemoaning the schools being closed and would rather their kids stand outside, waiting for the bus, in temperatures that cause frostbite in less than a minute. ¬†None of y’all have my sympathy. Not one. Not even kinda.

Fortunately, more often than not, parents have valid (often interesting) questions, and are not assholes to each other. It is awesome to participate in communities of people who are willing to offer words of wisdom or actual assistance when someone needs it.

A Month? Really?

It’s hard to believe it’s been 4 weeks since my last post here. It doesn’t feel that long.

I’m not sure why, but somewhere along the way, I started to think that I should only write here when I have something meaningful to say and not just whenever I felt like writing. I’ve decided that way of thinking is crap, if for no other reason than it means that I unnecessarily self-censor and therefore do not end up entertaining myself or you by writing.

There was a week in there when I was working on an entry, but I seriously depressed myself writing it. ¬†It was going to be 20 Ways You’re *Actually* Doing Better Than You Think You Are – which was an answer to a similarly named entry on ThoughtCatalog that primarily focused on earning enough money to be comfortable, and thus had a needless slant against disabled people. (I say this because 6 of the 20 things focused on earning/having money.)

Instead of focusing on money, I focused on things like being alive, not being trapped by human trafficking, not being in jail, being able to read, and living somewhere where you are not persecuted for your race, gender, or religion (all discussions of privilege or nationalism aside).

If I’d kept it on the shiny, happy side, y’all would have definitely seen it, and it would have stayed short — but that’s not the way my brain works. (Stupid brain!) Each one of those “good things”¬†ended up with its own short¬†expos√© about how shitty other people have it and what you can do to help. ¬†After “working to bring ¬†awareness” of so much awfulness that exists in this world that I really cannot affect in any meaningful way, I managed to depress myself pretty thoroughly. Fortunately, I’m carrying a happy thought inside me.

Less than 10 weeks til I’m a Mommy.

This was taken at 28 weeks after several friends requested a baby bump shot.

This was taken at 28 weeks after several friends requested a baby bump shot. Don’t I look classy?

According to the calendar, we’ve got fewer than 70 days to go. I can’t believe that Adam and I have only¬†2 months left of being irresponsible. fancy-free adults a 2 person family.

The fact that our lives are about to be permanently changed is kind of a mindfuck. I don’t think it’s actually possible to be prepared for it… but at least we have the crib built, even if we don’t have the hospital bag packed yet. (I keep meaning to do it, but keep putting it off for God-only-knows-why.)

There is one thing that I did today that both made me very happy and very weepy, as I tried to sing along. I created a playlist of songs that I want to sing to him on YouTube.

 

Here are the tracks:

Heaven – Bryan Adams
Beautiful Boy – John Lennon
Here Comes The Sun – Beatles
Lullabye (Goodnight My Angel) – Billy Joel
Sweet Child O Mine – Guns N Roses
I’ll Be There – Mariah Carey
You Are The Sunshine Of My Life – Stevie Wonder
Close to You – Carpenters
We’ve Only Just Begun – Carpenters
You Are My Sunshine – Johnny Cash
A Dream Is A Wish Your Heart Makes – from Cinderella (Sung by my favorite Berklee voice teacher, Donna McElroy)
Once Upon A Dream – from Sleeping Beauty (sung by Lana Del Rey)
Blackbird – Sarah McLachlan
Goodnite Sweetheart, Goodnite – the Spaniels
U Smile – Justin Beiber
Baby Baby – Amy Grant
Closing Time – Semisonic
Three Little Birds – Bob Marley
Beautiful – Christina Aguilera
I Will Always Love You – Whitney Houston
Everything I Do, I Do It For You – Bryan Adams
Godspeed (Sweet Dreams) – Dixie Chicks
Baby Love – The Supremes
Danny’s Song – Kenny Loggins
Edelweiss – Sound of Music
Waltz – Fiona Apple
Sweet Dreams – Tori Amos

Anything you think I’m missing? ¬†I’m always happy to add to it.

And… that’s all for now, because Adam’s home, and I’ve got to get myself off this couch for a while. Happy weekend, everybody. ‚̧