Good Enough.

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

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

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

Ghosts of the Past

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

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

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

…but I’m not.

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

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

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

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

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

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

So Much More Than Good Enough.

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

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

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

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

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

hugabug1

 

And today I’m fine. (So far.)

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

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Happiness > Folded Laundry

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

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

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

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

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

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

domorehappy

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

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

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

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

The Sticker List

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

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

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

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

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

poopsticker

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

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

Hope you’re all having a wonderful day. ❤

 

Too many thoughts not to blog.

It’s been a couple of months since I last wrote. Being a mommy makes finding time to sit down at the computer tough. If FB and text wasn’t available on cell phones, I probably wouldn’t communicate with anyone other than Adam and my mom.

I just put Henry down for his nap, and even though I know I should go lie down too, I feel the need to write – so that’s what I’m doing.

There are sick people in this world. I’m one of them.

Truth be told, I’m feeling pretty rough today. My stomach is hurting really badly… like I swallowed something that’s eating me away from the inside. I’ve been having a hard time making myself eat or drink for the last 2-3 days, but I’ve been forcing myself.  Today, my stomach is hurting all the time, whether I’ve eaten or not. I’m debating making another appointment with my gastro team.

There’s definitely something amiss, and I’m becoming increasingly confident that it’s more than fatty liver. Last time I saw them, they ordered extra tests for immunology, and it turns out that I’m so deficient in immunoglobulin that they want me to see an immunologist.  That news was delivered to me a couple of weeks ago… and I’ve been waiting for their letter to arrive in the mail with their referral. That’s right, I haven’t made an appointment yet. I keep thinking this stupid thought: “Well, my MS is not progressing on MRI, so it’s probably a good thing that my immune system isn’t working right.”

Stupid. Ignoring health matters never makes them improve.

Today, my left foot is all tingles, the tops of my legs and my lower back feel like they’re on fire, most of my left chest is numb, and I am achy all over (on top of the tummy ache and headache).  Because it’s my special lady time, I’m inclined to just suck it up and bet that this is a pseudoexacerbation – but if it doesn’t go away in 2 days, I’ll call my neurologist and request steroids. I can’t not request steroids when I start having time travel (complex) seizures for more than 2 days.

Who needs The Doctor?

Yesterday, I “traveled” again… and the results were simultaneously eye-opening to me about myself and how badly I still need to work on self-compassion and how totally bizarre our world is at the moment.

See, yesterday, I woke up thinking it was 2009 and that I was supposed to take the bar exam in a couple of weeks.  The first thing I did, (Again, stupidly. There’s a theme here.) is check Facebook and try to get my bearings, since I was aware that I was dealing with post-ictal confusion.

This lead to me reading about the latest Supreme Court move that guts the 4th Amendment (Seriously, the damage to our civil rights that have happened in the last 30 years is staggering.), followed by a ton of people debating the 2nd amendment (Who honestly cares about the right to bear arms when our military is so big we could never hope to use force to overcome martial law at home? Or when cops can stop you for no reason at all just to check your status?  “Papers, please?” anyone?), followed by a ton of Donald Trump/Hitler comparison memes.

This was going on while my kid was alternating between eating crackers and throwing them at the dog. That was much less of a shitshow than the discourse I saw on Facebook.

And you wanna know what upset me? That I very clearly wasn’t an attorney. That I wasn’t doing more to fix things that are out of my control. (Our country is basically a fascist oligarchy at this point. I can’t undo that by myself, much as I wish I could.)

And then, I got angry that I’m not doing enough to fix things that are in my control. My house is too messy, and I was not ok with that… or the fact that I have no one that I can call to help me with the baby when this shit happens. Or that my husband works so far from home that even if he were able to leave work at the drop of a hat, it would be at least an hour before he’s here.

Essentially, yesterday, I realized that the world is on fire, and I am walking a tight-rope without a safety net. And I got very angry with myself for that… but anger doesn’t help anything.

I deserve to be able to call someone to be with me and Henry when I am having complex seizures.  And if that means that I need to interview strangers and hire a damn babysitter, even if Adam doesn’t think anyone can handle my seizures but him, that’s what I’m going to have to do. Henry and I deserve at least some measure of security.

Grateful.

Of course, all this emotional upset is pointless. Yesterday, we were safe. Henry spent a little more time in the pack and play than he would have liked, but he had toys and TV, and he enjoyed a lot of roughhousing with Daddy when he got home. I listened to my postictal playlist and “came back” pretty quickly — in less than a half hour, which is pretty great. I didn’t have any more complex seizures the rest of the day. Calling someone to come over would have been completely pointless.

So, who the fuck knows what the right thing is to do? I’m just grateful this doesn’t happen all the time.  Heck, last week, I was doing so well that I was able to take Henry to Gymboree every day. This week… not so much. But that’s life. You just gotta roll with it.

If you’re feeling well today, I strongly urge you to find something you can do, using your body and your good health, that will make you feel proud of yourself. Be active, and enjoy it. Exercise. Clean. Volunteer. Have awesome sex. Eat spicy foods. Go to a dance club filled with strobe lights. Watch a visually-intense movie at a theater. Drive wherever the wind takes you. Swim in the deep end. Nobody knows how long their good health will hold out, and those of us who deal with the crazy ups and downs of having multiple chronic illnesses hate to see anybody not enjoying that gift.

Carpe the shit out of this diem, people. It only happens once.

yolopug

News of the Rae

Today, I was thinking about how much I miss actively participating on LiveJournal. What I really have been missing is reading about what’s actually going on in my friends’ lives (as opposed to looking at memes about politics, sarcasm, and incorrect grammar), and writing about what’s going on in mine.  Twitter and FB are absolute shit for emotionally meaningful communication, and the only way for me to remedy things is to do some writing myself and to reach out to friends on the phone or Skype.

Medical Insurance Is A Lot Of Work

This week has been fucking crazy. I’ve gotten calls from almost every medical care provider I’ve worked with in the last 3 years because Humana was given incorrect information by BCBS of MN with regard to my coverage, and they sent out letters to those providers requesting a refund of the money they paid for my medical care.  You can just imagine how many providers I’ve seen in 3 years with my health being the way it is. Needless to say, a tiny mistake turned into a ridiculous clusterfuck (and one hellacious panic attack) for me.

See, BCBS does identification numbers weird.  Our family has 1 identification number and 3 member numbers, one for each of us. When CMS (Centers for Medicare & Medicaid Services) and Humana asked BCBS how long I’d had coverage, they only provided the identification number (because, apparently, all the other insurance companies have unique identification numbers for each person), without knowing that there were 3 members under that number. This lead to a simple, but unfortunately large, misunderstanding, since Adam’s had BCBS since 2011. It also lead to about 30 minutes of actual talking and 4 hours of sitting on hold to clear this shit up.

insurance

So accurate that it hurts.

In the end, it all boiled down to BCBS needing to fax a letter to both Humana and CMS letting them know that my coverage only started in January of this year. I just had to call back and forth between the different organizations and talk to different CSRs, explaining the situation over and over again. (For the record – customer service at BCBS is much faster to get a hold of and to work with than that at Humana.)

But I learned important things!  Like that every insurance company has a department devoted to the coordination of benefits, and that if you are on Medicare or Medicaid and you purchase private insurance or change providers, you absolutely must call CMS (at 1-855-798-2627) and also let their coordination of benefits department know, so your billing doesn’t get all jacked up.

I also learned that if you have Medicare (or Medicaid), and you choose to purchase another policy from a private insurance company, then the private insurance will always be your primary insurance, and Medicare (or Medicaid, or whatever other state-based insurance) will be your secondary.

Pharmaceutical-Grade Supplements Are Totally Worth It (For Me).

Also filed under “crazy” this week (but in the crazy GOOD category), I weighed myself after 2 weeks on the diet and supplement regimen prescribed to me by the endocrinologist I saw at BodyLogicMD.  I lost 7 pounds!  That’s a tenth of how much I want to lose, and it happened without any frustration.

This may not seem like the biggest deal in the world to anybody but me, but I seriously have been trying to lose weight for years with no success. I went paleo for months at a time. I weightlifted. I tried South Beach. I tried doubling my cardio. I tried calorie restriction, eating 1000 calories a day or less for a couple of weeks.  I  GOT PREGNANT AND HAD A BABY, and still had no change. (I seriously gained a total of 18 pounds with the pregnancy and lost 10 of it when Henry came out, and went right back to the same weight I had started at within a week.)

But now, I have movement on the scale, and all I’ve been doing is taking the supplements (prescribed based on deficiencies that showed up in my bloodwork), eating small meals every 3 hours (just like during pregnancy), drinking at least 64 oz of water a day, and not eating bread or pasta. I’ve been eating rice. I’ve been eating potatoes. I haven’t been working out. And the weight just  disappeared.

Another bonus: I have a ton of energy that I haven’t had in years. It’s amazing to me. I didn’t even expect that it would affect my fatigue… but it has.  There have been days where I didn’t even feel like I have MS. I mean, I went 2 whole weeks without an energy drink, or even 2 cups of coffee.  I don’t think that’s happened in the last 10 years.

But What About BioIdentical Hormones?

The doc at BodyLogicMD also prescribed me some bioidentical hormones to help with MS and seizures.

Based on the studies on estriol that have come out of UCLA, she put me on an estriol cream. It looks like it should be as effective at staving off relapses as Copaxone, at least for the first year.  I start it tomorrow.  I’m hopeful that it will be just as good as a DMD.

I’ve been very lucky not to have any progression since coming off Gilenya in February of 2014 to conceive Henry.  Dr. Javed wants me back on something if we’re not actively trying to conceive, but I have yet to try a disease-modifying drug for MS that isn’t somehow worse than the disease itself — so I’m keen to give Estriol a try, since the second and third trimesters of pregnancy were very much like a vacation from MS.

I’ll be starting a daily progesterone pill on Day 12 of this cycle to help combat catamenial  (read: caused by hormonal fluctuations around menstruation) seizures. When I was pregnant, I went for months at a time without a seizure. It is my most profound hope that I can return to a life where seizures are a “sometimes” thing and not an everyday occurrence.

I’ll be sure to let everyone know how these therapies affect me.

But for now, my honey just got home, and I wanna go give him kisses. ❤

love

All Hail Second Nap!

Good Lord, have I been having a hard time getting to write recently!  So much has happened since my last entry. Fortunately, the little guy is down for his second nap, so allons y!

Happy Birthday, Hugabug!

13122875_10209419410351888_2676262525585641334_oA couple of weeks ago, my little guy turned 1. We celebrated on his actual birthday with the Majka family, and then the Shapiros came into town the next morning and stayed the weekend to celebrate Henry’s 1st and my Dad’s 59th birthday, too.

Our family gets SLAMMED at the end of April. Henry was born on the 29th, Uncle Stuart (my mom’s brother) was born on the 30th, and Aunt Caren (mom’s sister) and my dad were born May 1st.  So, we have 4 birthdays in 3 days. No big deal.

sillyhenry

I can’t love this little goober or his birthday tuxedo more.

Not for nothing, I think that we have an interesting birthday pattern happening. I grew up with my aunt and my dad having the same birthday (but different years). Henry gets to grow up with his mom and his Uncle Nick having the same birthday, all the way down to the year.  If he ends up marrying someone that shares a birthday with one of his future siblings, I will be consulting an astrology expert to find out the real meaning of it all. *lol*

The stats.  At 1 year, Henry was 24 pounds and 30 inches tall. He took his shots like a champ.

Obviously, being the daughter and granddaughter of doctors, I’m a fan of vaccinations — but I’m so glad we’re able to protect him against chicken pox. I had it so badly that I still remember how it felt, even though I was really, really young when it happened. (It was in my ears, people, and between my toes, and pretty much, well, everywhere.) I have a special place in my heart for Caladryl.

He is cruising. Adam and I are sure he will walk any day now. He’s just not doing it yet, for whatever reason. He can hold on to stuff and move quickly and easily. He climbs up and down from the couch. He is eating solids, like cereal puffs and baby cheesy poofs, and he’s learned how to drink the purees from the pouch instead of having me spoon-feed him. He still isn’t comfortable with using the spoon himself, but that will come with time.

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Smash cake tastes good!

And what else? His favorite TV shows right now are Sesame Street, Creative Galaxy, and Tumble Leaf — though he still brightens up when I put on Daniel Tiger, and he’s shown some interest in Peep and the Big Wide World.

He’s babbling like crazy. I expect he will be speaking in sentences within the next few months.  He has several words – Mama, Dada, Nah-Nah (Grandma), Buuuh (book), Bahbah (bottle), and Lahyew (love you) are the most common we hear.

He also has started fighting sleep. So, getting the kiddo to go down for naps has been an exercise in patience and mindfulness. Right now, for example, I can tell he’s awake. He’s smacking his headboard and turning on and off his mobile, but he’s not crying, so I’m letting him be. He’s got a couple of stuffies in his crib, so I’m sure he’s enjoying talking to them.

Health Crap

Speaking of exercises in patience and mindfulness… let’s talk about my health for a second.

Last time I wrote, I had to get an MRI of my liver. Well, I did that. And the gastroenterologist told me she was worried, based on the images, that I might have a tumor.  I did blood work for that, and thankfully, I don’t have one.  She does, however, want me to get another MRI in 3 months. I’m not really sure why, but I’ll be asking when I see her at the end of this month. I’m also not sure if I have a positive diagnosis of NAFLD, but I’m trying to lose weight anyway.

I also finally saw an endocrinologist.  Turns out that I’m terribly chromium deficient, which is causing me to become insulin resistant. My cortisol is also totally out of whack, and the combination of those 2 things means that losing weight isn’t something that my body will agree to. It believes, very firmly, that I need to hold on to all my fat… you know, because winter’s coming.

So, I’m making some big lifestyle changes to change my body’s mind. I’m on a bunch of new pharmaceutical-grade supplements that are helping with energy (I have to take, like, this whole handful of them 3 times a day), and I’ve started a new diet (which is basically the same as The Primal Blueprint, but allows legumes) where I have to eat every 3 hours (or else I get dizzy). I also have to drink about 100 oz of water a day.

As for other hormones: I’m starting estriol in a cream form in a few days as a treatment for my MS (arguably better than any of the currently-available DMDs) and bio-identical progesterone pills to help control catamenial seizure activity instead of going back on Seasonale.

The goal is to get down to what’s considered “healthy” BMI before I get pregnant with baby #2. I am disciplined enough to do the diet and exercise, but I have to hope that my body will play along nicely enough to allow me to get the exercise done. It will be a slow road, since I can’t get my heart rate up too much or I’ll cause seizures.

Fortunately, I have really good support from my heath care providers and my family, and a membership to a 24 hr gym with a cold lap pool. It could be a heck of a lot worse.

Aaaand Henry’s starting to sound not so happy, so this has to be it for now. Hope you’re all doing well. ♥

 

#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.

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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.

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Here’s a link to my most recent stuff.

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

Love That Hugabug!

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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.

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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!

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

Living In The Moment

One thing that having MS has really done well for me is to force me to live in the moment.  Prior to developing seizure disorder (thanks to MS), I was almost always focused on the future. I was in law school, working all the time towards a goal that I would not achieve. These days, my goals are much more short-term and achievable.

Yesterday, for example, I had a crazy to-do list — more stuff on it than I could possibly achieve in one day.  I live by by the motto, “Do what you can when you can,” so I got a lot done before the evening, when I had a bunch of seizures.

This morning, I’m fighting the urge to be upset with my past self.  I have a ton of dishes to do, including bottles for Henry.  If I don’t do them first, he won’t have anything clean to eat from.  But I remember yesterday. I remember walking to the village hall and the grocery store. I remember going to the chiropractor. And I remember going to sleep confused and post-ictal.

yesterdaySo, I didn’t get everything on my list done… but I did a lot, and practicing self-compassion means not ruining today by being a bully to my past self. Nothing helpful occurs by being mean to myself for things that are outside of my current control.

There are times when I credit my ability to live in the moment to learning and practicing meditation, but the truth of the matter is, when you have an uncontrollable seizure disorder, you learn both to prioritize your activities and to focus on what really matters — safety and caring for your (and your child’s) most basic needs. Everything else takes a back seat from time to time, and that’s ok.  You have to give yourself some mercy. Dishes will wait. Unfolded clothes will wait too.  And yes, even a shower or bath will wait too. Nobody died from being stinky for a day.

Today, my neck and back are crazy sore, but I’m going to do my best and do what I can.  That means getting out the blanket and toys for Henry to do some tummy time while I wash dishes. When he naps later, I’ll work on the seemingly never-ending comparison spreadsheet that will help me decide my Medicare advantage plan for next year and answer the question of whether or not we should add me to my husband’s insurance policy.  (I’ve got to learn how secondary insurance works!)  I honestly can’t imagine how folks who have more cognitive hardships than I do make these important decisions. They certainly don’t make it easy to figure out which plan is the best.

Time to go snuggle a baby, put on some Sesame Street, and do all the things. Hope you’re having a good day.

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2 Months!

Hard to believe it’s only been 2 months since Henry was born.  What? You thought I meant to say, “I can’t believe it’s already 2 months!”  Nope. That’s not now newborn time works.

With all the feedings, diaper changes, cries-that-you-really-hope-meant-that-he-had-gas-because-otherwise-you-have-no-idea-what-was-wrong, lack of consistent sleep, and changes to your body and sense of self, 2 months seems like a surprisingly long amount of time for this new mom.

I’m takin’ it back!

One of the hardest things for me about pregnancy and the 2 months postpartum has been changes in my sense of self.  I don’t want to say that I’ve become the most boring person alive, because that’s not true. I have an adorable kid, and any thought that includes the superlative adjective “most” is almost certainly irrational.  But outside of being a new mommy who is handling MS and seizures, I haven’t had a lot of energy to devote to doing the things that made me feel like myself.

I’m here to pump *clap* ME up!
The first thing I’m addressing is my activity level. I spend entirely too much time sitting on the couch surfing social media — and let’s face it, Facebook can be crazy depressing, even when everybody’s happy about something. (Take, for example, the legalization of gay marriage and the resulting celebratory bashing of bigots.)   ANYWAY. There came a time, around 5 or 6 months into the pregnancy, where going to the gym every day after Adam got home from work stopped being a thing…  and shortly thereafter, I stopped trying to work out at all.  I reverted to being the full-time couch potato that I was back when I was having seizures all the time. Sinking back into the fluffy comfort of the couch and company of other folks who were as cranky as I was (if not moreso), was far too easy.  Well, as of today, I’m allowed to work out again, and I’m pretty damn stoked about it.

For me (and most human beings), engaging in some form of physical activity is necessary to having good mental health.  When I work out, even for 10 minutes, I feel better about who I am as a person. I feel less lazy, more attractive, less hopeless, and more in control of my life.  So, today, I’m determined to walk a mile with Henry.  I’ve suggested to Adam that when we take the dog for his afternoon walk, we do it all together and take a longer walk than usual.

I’m also looking online for free pilates and yoga workouts, since I also want to stretch and tone. Youtube is filled with them. The tough part, for me, is separating the wheat from the chaff and finding a routine that I actually want to do. So, if you have a routine online that you love, I’d be stoked to hear about it.

Turning Back On The Tap.
A few years ago, I had memorable conversation with my friend Mike, a guy who actually makes a living as a composer. (It’s true! There are actually people out there who can do that! Just not many.)   I was in law school at the time, and had let all of my musical endeavors fall by the wayside in favor of spending almost all of my free time blogging on LiveJournal, learning all there is to know about BDSM, dating, and working out. Considering how busy I was studying during law school, I was actually living a reasonably well-rounded life, but without regular music practice, I felt like I had abandoned a big part of my identity.

Mike told me about this theory with regard to the practice of music: It’s just like getting clean water out of plumbing that has rusty pipes. You’ve got to turn it on and let the water run for a while.  At first, the water is gonna be brown and gunky, but eventually, you’ll get clean water.  The same thing’s true for the practice of music. You’re gonna suck for a while. It’s gonna be hard for you to hear yourself, but you gotta keep practicing. Eventually, you’ll sound like yourself again.

With Henry’s arrival, I’ve been singing much more — every night, in fact.  And, I find myself struggling not to harshly judge myself. I often forget lyrics. I wonder if my tone is okay. I wonder if I’m singing the right songs. (I never sing traditional lullabyes.) I wonder if the songs sound weird without their normal background accompaniment. I wonder if the kid actually likes being sung to or if I’m torturing him by singing the same things over and over again.  And I wonder why I’m not writing lullabyes just for him.

So, my goal for this week is to write Henry a song and sing it to him.

And Everything Else
Eventually, I’m hoping to also get back to creating the card games I was working on (“Flavor Friends” and “Bake!”) and write some children’s books, but I don’t want to self-sabotage by overloading myself.   I’ve still got a 2 month old to care for, medical bills to sort out (Thanks for your incompetence, Humana!), a house that we’re trying to buy, and all the rest of the responsibilities that go along with being a housewife.

One step at a time… starting with feeding the little one.