And today I’m fine. (So far.)

Posted in Just Life., Uncategorized by Rae

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!)

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.

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.

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. ❤

20May2016

News of the Rae

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

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. ❤

10Mar2016

waves

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

Hey there.

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

Here’s a link to my most recent stuff.

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

Love That 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.

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.

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!

2Nov2015

Do It Anyway.

Posted in Just Life., Multiple Sclerosis by Rae

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.

10Sep2015

Maintaining a Happy Marriage with MS

Posted in Just Life., Multiple Sclerosis by Rae

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.

I 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.

Did 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.

When 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.

There 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.

One 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

Lastly, 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. ❤

29Jun2015

2 Months!

Posted in Just Life. by Rae

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.

9Jun2015

Sending a Letter Through Time

Posted in Just Life., Seizure Disorder by Rae

Henry says, “What are you lookin at?”

It’s been a good day. Challenging, but good.

It’s a Tuesday, which means that Adam’s at work, and this is only the second day that I’ve had to take care of Henry and myself without any help.

The morning started out rough. Yesterday, we ran out of disposable diapers, so we started using cloth diapers from the stash that I’d put together before Henry’s birth. Fortunately, he’s now over 8 pounds, so they fit him. (If cloth diapers had the yellow-turns-blue-so-you-know-he-peed technology, that would rock my world. Scientists, get on that, won’t you?)

Anyway – the change from velcro-like closures on the disposables to the snaps on a reuseable Best Bottom shell got the better of me this morning in a suuuuper annoying kind of way. You know that scene in all the baby movies where one of the parents gets peed on, and the baby pees on everything around it too, in an impressive and comedic fashion where you think to yourself, “Wow, kid got a lot of height with that whiz!” Well, that was how I started my day — but it’s not where I am now.

Somehow, today, I managed to keep the kid fed and mostly clean (He needs a bath, thanks to spit-up, but we’re waiting for Daddy for that one!), to eat breakfast and lunch (Ok, so breakfast was just a Fiber One Protein Bar and a few swigs of RC Cola, but it’s better than nothing!), pump 3.5 oz of breast milk, do 2 loads of laundry, and take the kiddo with me to the grocery store and pharmacy down the street.

I know to a regular SAHM, this is probably not such a big deal — but I’m not a regular SAHM. Today’s the first day that I’ve managed to find time to put clothes on instead of pajamas, and is the first day in 3 weeks that I haven’t had any seizures at all. Even on a good day, prior to giving birth, I would have been proud of myself for this level of activity. Adding in diapers, bottles, and pumping for breast milk, and I feel like I need some sort of gold star on a chart somewhere… which I guess is what this blog entry really is. I’m proud of myself, my kid is napping, and I get the chance to tell the world how far I’ve come.

If I could send letters back in time, I’d write this today.

Dear early 2011 Rae (the one having so many seizures per day that she has to use a chair to shower, isn’t allowed to cook, is bankrupt and suicidal),

You know how you are worried that you have no good reason to live, and that you are nothing but a burden to your family and society? Well, in 4 years, you’re the woman walking to and from the local (non-chain) grocery store and Walgreens with a 6 week old baby that strangers can’t stop cooing over, to shop for fixings for dinner and baby supplies…and you haven’t had a single seizure today.

Thanks for not killing me! There is more to look forward to than you can allow yourself to imagine.

-2015 Rae

I doubt she’d believe it was real. I’m a cynic — always have been — and depression/suicide is a crafty demon that doesn’t let anything positive in… but if I could show up in a TARDIS and give her a pep talk, I sure as shit would do it. I hope that sometime in the future, if I need a pep talk, I remember to look back here and see how far I’ve come, and remember that things are never really as bad as they seem.

Look what I had to look forward to!

That being said, it would be totally bitchin’ if 2019 Rae could send me a letter or show up and let me know that we’re gonna make it through this infant stage without me losing my mind or ending up in the hospital because of sleep deprivation and stress. *looks around, expectantly* Well, I guess that’s not happening, so I’m gonna have to just keep doing my best every day, and remember to do my future self as many favors as possible. 🙂

Speaking of — that means getting off my butt, putting a freshly-laundered mattress pad & sheet back on the pack n play, washing all the bottles that have collected around the apartment, putting up another load of laundry, and straightening up a little bit. Heck, I might even go for extra credit and spritz on a little bit of pretty stink. Adam’s on his way home!

14Mar2015

32 Weeks & Personal Growth

Posted in Just Life. by Rae

Hey, party people!

Yesterday, I saw my OB. I was hoping to have a new ultrasound to show everybody, but Henry was all balled up on my left side, so we couldn’t get any good shots. Maybe we’ll be more lucky next week.

The breech tilt -- something I'm supposed to do 3 times a day for 20 minutes a session. Laying upside down on an ironing board... totally natural, right?

The breech tilt — something I’m supposed to do three times a day for 20 minutes at a time. Laying upside down on an ironing board is totally natural, right? Did I mention that I don’t own a full-size ironing board yet?

Currently, the kiddo’s transverse. He’s really taken to using my left lower rib as a pillow recently. While a part of me thinks that’s sweet, the most of me is tired of the pain and wants him to flip around and get into ready position. I’ve been reading up on how to do that and doing some of the exercises suggested on YouTube (like this video) and sites like SpinningBabies. To be totally honest, though – this site‘s my favorite, for no other reason than it’s both helpful and hilarious.

I’m 99% sure that his breech position is entirely my fault because I spend so much time sitting, either at the computer or on the couch, and I’m almost never pelvis-forward. Time to start sitting on the floor, the balance ball, or flipping chairs around backwards.

Oh, and some things I’ve learned…

One way I didn’t expect pregnancy to change me was on a personal level. I thought I was already pretty mature, and that all the personal growth would be happening after the baby came out. But, it doesn’t work that way. Here’s what I’ve learned recently.

1.) Everybody knows at least one pregnancy horror story, and they all will tell you that story, regardless of whether or not you want to hear it. People who haven’t been pregnant don’t really care if it’s going to freak you out. There’s a real feeling that if they don’t let you know what happened to their sister’s best friend’s aunt, it could happen to you too. I’m getting really good at reminding myself that being afraid isn’t going to stop anything bad from happening, so it’s not worth it.

2.) Most people who had babies more than 30 years ago seem to believe that the science of baby-rearing stopped progressing when they had their kids. So, when they tell you how vitally important it is to have bumpers on your crib or that the best way to calm your baby is to put it on its belly with a fluffy stuffed animal and a blanket, they’re not actively trying to kill your kid. They just can’t fathom that the parenting advice that was given to them by doctors (and that they followed) isn’t considered safe anymore. What’s worse is that many of them feel personally attacked if you correct them… which is why I am becoming incredibly good at just saying “thank you” for advice that I have no intention of following, and acknowledging that the bad advice is just a long-winded way for them to say that they want the best for me and my kid.

3.) Speaking of opinions — everybody has one, whether it’s an opinion on how you should be raising your kid, what you should be eating and/or doing during pregnancy, or what they consider socially acceptable… except for me, now.

I honestly don’t care if you use disposable diapers or cloth, if you formula feed or breastfeed (in public or private), if you co-sleep or strictly crib it. I could care even less if both you and your spouse work full time and have a nanny or if you are so committed to attachment parenting that you’ve decided to quit your job and spend all your time and energy homeschooling your kid from birth. Don’t believe in western medicine or giving birth in a hospital? Mazel tov! More resources available to those of us who do. The circumcision debate? Both sides have merit! I really don’t care how you choose to parent.

I have decided to believe that everybody wants to do right by their kids (unless they’re a total sociopath or narcissist), and that if their personal decisions do not personally affect me or my family, they’re not worth my emotions or energy.

This is as true for the mommy who has decided not to treat her kid’s ear infection with antibiotics (and instead to use essential oils) as it is for the parents who have decided that once their kid hits age 6, she’s going to boarding school. Would I personally make either of those decisions? Oh hell no. But you’re welcome to them.

4.) Speaking of — I remember my pre-pregnancy days. I thought my opinion mattered when it came to how my friends were raising their kids. It didn’t. It still doesn’t. I remember losing a friend because I so passionately argued against the use of leashes on children, and she was committed to using a backpack harness and leash on her daughter. That friend didn’t need the aggravation of dealing with my unwanted opinion, and she was right to unfriend me. She was working hard to raise her kid and keep her safe, and my approval of her methods was not necessary.

Do I still think the use of child leashes is a bad thing? Most of the time, for the great majority of kids, yes. But does my opinion make a damn bit of difference? Hell no. I’ve learned that there are times when I just need to keep my mouth shut. And during times when I can’t (and yes, I acknowledge that they exist), just say what I have to say, and then back the fuck off. Arguing is not helpful in any way to either of us.

5.) I am super-grateful that I have been through the emotional bullshit and therapy that I’ve been through. I’m not ashamed of it. I feel so much more prepared to parent because I have already accepted that I’m gonna fuck up along the way and that fucking up is part of doing things right in the long run.

If I can teach Henry to not fear failure but to embrace it as a step on the way to greater success, I will have saved him from a lot of pain and anxiety. And I’ve been feeling a lot of anxiety recently about becoming a mom. My mantra recently has been, “We’ll figure it out.”

Am I gonna breastfeed or formula feed? Who knows?! I want to breastfeed as long as possible, but if I have an MS relapse when Henry’s born, I won’t have much of a choice — so we’re preparing for both eventualities. We’ll figure it out.

Are we going to use disposable or cloth diapers? Well, I love the look of cloth diapers and that they save money over time… but I have no idea about what my health is gonna be like or whether or not it’ll work with our lifestyle. So, we’re registered for cloth diapers, but we’re also gonna have a beer & diaper party for Adam’s birthday. When Henry’s born, we’ll see what works best for us and figure it out.

Heck, I obsessed over everything on the registries… but at the end of the day, if anything doesn’t work for us, we’ll figure out what does. None of these things are life and death.

14Nov2014

Apples & Oranges

Posted in Just Life., Spirituality by Rae

Week 15!

I’m currently very amused by the fact that some websites say our baby is the size of an apple and others say s/he is the size of an orange. There’s something poetic and hilarious about it because it means that you really can compare apples an oranges, at least as far as size is concerned. 🙂

For all interested parties, I am now showing! Most of my clothes, though, are loose, so unless you felt my belly, you still wouldn’t know. One of the perks of losing ~20 pounds before conception has been that most of my clothes still fit very comfortably, jeans aside. I basically am living in my pajama pants and t-shirts. That hasn’t stopped me from falling in love with maternity clothing, however. I honestly believe that belly panels and shirred sides on shirts are some things that plus-sized women’s fashion has been desperately needing for a long time.

And can I just say how totally bizarre it feels to have all of your organs shifted around and up, and for your lower abdomen to start feeling kind of like an inflated ball? Because it’s straight-up weird. And it’s occasionally acutely painful. The best way I can describe it for guys or ladies who haven’t experienced it yet is that sometimes you get cramps that feel sort of like the cramps you get when you are super constipated and really have to make a bowel movement, but slightly higher in your abdomen… and no amount of pooping is going to make anything better, so eating a big handful of prunes, while great for its fiber and nutrients, is ultimately folly.

This week has been much better in the realm of tummy issues, though. Only 1 day where I got sick – otherwise, things are alright!

One thing that has been a bit disturbing to me is that I’ve had a few seizures. Not like, a ton or anything – heck, it’s nowhere close to what I dealt with prior to pregnancy, but it still freaks me out when it happens. I got so used to not seizing! I got some tinglies in my feet and back yesterday too, so I’m willing to bet money that I’m fighting off some kind of ickyness. It’s nothing to be worried about, just so you know. My epileptologist told me that as long as I continue breathing through the seizures and am not falling, it’s not likely to harm the baby. Her biggest concern is making sure that me and Hush Puppy have sufficient oxygen at all times.

Pre-Birth (or “Soul”) Contracts

So, one thing that Facebook is really great for is introducing me to concepts that are second-nature to friends of friends but are totally unusual and bizarre to me. One of these things is the concept of the Pre-Birth Contract.

A quick summary: Before you were born, you and a bunch of spirit guides got together, reviewed your last lives for what was good and bad, and decided a path or “destiny” for yourself to move towards enlightenment — to better understand what life is all about — to better understand how you are a part of God. This solidifies the idea that there are no coincidences or accidents — this was all part of God’s (and your) plan. The curve ball? You forget all about the contract you made upon incarnation and have to experience it without the knowledge that you’ve chosen your path for your higher self’s greater good. That’s the only way for you to experience free will and the ability to creatively problem solve.

At first blush, this notion made me angry (It seemed like the cruelest form of victim blaming I’d ever seen.) and then it amused me greatly. My response to my friend’s friend was, “If I planned the life I’ve gone through for my greatest good, I am a serious pain in my own ass.”

I mentioned it to Adam, who is an even bigger fan of table-top roleplaying games than I am, and his immediate response was, “What a neat idea! It’s like cosmic character creation.” He made a joke about how there’s got to be real estate in Heaven, and that we’re all just trying to get to the de-luxe apartment in the sky — that folks with harder lives get better quarters. Imagining that I’d get better digs because of MS and seizure disorder gave me the giggles. When I said, “I’m doin’ it all for us,” he was quick to remind me that we’re only married until death, so he’d have his own place. I asked him a moment later if my eyes were actually shooting laser beams into his face or if I was just imagining it. 🙂

I wondered if Hush Puppy was currently in negotiations, or if that happened before conception. Then I wondered, with all the things I’ve endured (and continue to endure), what enlightenment my soul was after.

Why NOT me?

Yesterday, my friend Erika wrote a great blog entry about how she deals with self-pity in regard to having MS. Her tactic is not to say, “Why me?” but rather “Why not me?” She reminded us all that everybody’s got their burdens to bear, and that it’s better to do so without unnecessary sadness over the hand you’ve been dealt — but then she said something that I’ve seen many, many folks with MS say. She said, “I want my ‘old’ life back.”

For whatever reason, when I read that, it made me think about those Pre-Birth Contracts. It made me wonder, “What am I trying to learn?” I can’t count the number of times over the last 7 years that I’ve wished that I never developed MS… the number of times I thought about how much better life would be if I were still able to drive… to be a full-time attorney and to still perform musically without fear of experiencing seizures on stage… the number of times I have shamed myself for not being an equal financial contributor to our household… the number of times that I worried about being a burden to the people I love, or worried about frightening children with my seizures… the number of times I’ve had to fight suicidal ideation.

It got me thinking: what good has come out of dealing with MS and seizures? And the answer was, “Quite a lot.”

The Upside of Down

Having MS and seizures has caused me to learn many lessons that I would not have otherwise have learned.

It’s absolutely forced me to learn the importance of regular meditation and/or prayer for physical and mental health.
It has highlighted the need for self-compassion and made me learn how to practice it.
It’s made me question the way that I think about everything – and to constantly examine those thoughts for truth and rationality.
It’s made me wildly change my expectations of myself and others.
It’s made me face some of my biggest fears (like spending huge amounts of time alone or being locked up in a mental hospital against my will) and to learn how, not only to cope, but to thrive in situations that prior to seizures, I would have avoided at any cost.
It’s required me to face demons of past abuse and to do the hard work to move as far past those memories as possible by both growing as a person and learning to forgive the people who caused me harm to begin with.
It’s made me take a long, hard look at what I thought was important and to reassess my priorities.
It’s made me redefine what love means, and to see how vital it is to not only feel gratitude, but to express it loudly and regularly.
It’s made me a more kind, empathetic, compassionate person to others.
It’s made me much, much more patient. (Which isn’t saying much, since, emotionally, I’m still wildly impatient – especially with myself. Still, 2014 Rae is way more patient than 2006 Rae.)
It’s made me redefine what it means to be a good friend, and to more fully appreciate the people who are willing to be on this ride with me.
It’s made me painfully aware of mortality, of the importance of never taking any aspect of your body or health for granted, and of the fact that doctors are just people who are doing their best to help people with the knowledge that they currently possess.
It’s helped me to recognize what’s really important versus what society and advertisers suggest are the things we should be focused on.

If it weren’t for my disability, I wouldn’t have the privilege of staying at home with my future children. I wouldn’t know, deep down, that the most important work I will do in my life will be to raise kind, emotionally intelligent, community-minded, curious kids. I would be trapped in the Quest for More Stuff and More Power.

I wouldn’t know the joy of the double-nap day or the freedom that comes with being able to say, “The dishes and laundry will be there tomorrow.” I wouldn’t be able to laugh about people who are genuinely fretting over fashion or other “first world problems.”

Does that mean that I’m grateful for my challenges? OF COURSE NOT. That would be silly. Challenges suck! Nobody’s genuinely grateful for disability. But I am genuinely grateful that there’s gold to mine from the rubble. I am genuinely grateful for growth that wouldn’t have otherwise occurred.

When I think about my “old” life and my current existence, it really feels like looking at two very different people… sort of like comparing apples and oranges. 🙂

But either way, the fruit is sweet. Life is good.

Everyday Earbug

And just because life is amusing in its serendipity, while I was writing this, I found out that one of my favorite bands (Marina and the Diamonds) has released a new single. The name? “Froot.” I couldn’t make this up if I wanted to. 🙂 Hope you enjoy.

Happy Friday!

12Sep2014

A Very Cold Love Story

Posted in Multiple Sclerosis by Rae

My Review of the Cool58™ Secrets Vest

A while ago, I picked up the Cool58™ Secrets Vest from Polar Products after spending a lot of time researching cooling vests.

It wasn’t bad! A few weeks later, I received a request from the company to write a review on their site. I know several of you were interested in learning about whether or not it was a good investment as well, so I’m sharing the review here as well. This was what I wrote.

“Great for large-chested women with MS!”

Details: I got the Cool58 Secrets Vest because most of the other cooling vests were more like traditional vests – they went over your shoulders and chest. Personally, I am a large-chested lady, so finding a vest that would have a snug fit was challenging. The Cool58 Secrets Vest is great in that regard. It fits comfortably on my abdomen, above my belly button and below my bra. It’s easy to sit while wearing it, which makes it ideal for bike riding and use at the gym.So, why a 4 and not a 5? A few minor things. First, I’m not sure that the upper abdomen is the most effective spot for cooling the body. Depending on the kind of bra I’m wearing with it, I sometimes still end up with sweaty boobs and 1 inch lower have a cold tummy. It’s a weird feeling. Secondly, for me, it doesn’t cool enough on its own to be a stand-alone. I almost always end up grabbing something to put on my neck to help in addition. (So one of their kits might be good to try.) Lastly, it takes a while for the packs to “freeze” if you use the refrigerator instead of the freezer. Since I’ve ended up using the freezer anyway, I kinda wish I’d gone with the Kool Max Secrets Vest.At the end of the day, it’s great to be able to walk around in the heat without MS kicking my butt. My complaints are honestly minor.

You Can’t Ask For Better Customer Service Than This.

You can imagine my surprise when I received this email the very next day:

Thank you so much for writing a review about your Cool58™ Secrets Vest! We really appreciate you taking the time to share your thoughts with other customers.

It sounds like you might be interested in the Kool Max® Packs, since you are freezing the Cool58 packs. I would be happy to send you four to try in your Secrets vest. Let us know how you like them in comparison to the Cool58 packs!

Thank you very much for your business, and if there is anything you need in the future please let us know.

Warm regards,

Erin
Polar Products, Inc.

I was over the moon! A few days later I received not only 4 Kool Max® Packs that fit into my Secrets Vest, but also a Kool Max® Deluxe Cooling Neck Tie! I was shocked and excited.

How do I love thee, neck tie? Let me count the ways…

Prior to receiving this gift, I had used an Elasto-gel Cervical Collar to cool my neck. I loved it! But it didn’t last more than a half hour, which is fine if you’re just using it after going the chiropractor, but not the best if you’re battling heat sensitivity.

In contrast, the Kool Max® Deluxe Cooling Neck Tie is freakin awesome in terms of how long the cooling power lasts. Truth be told, I haven’t tried wearing it longer than an hour or so, but I didn’t take it off because it had lost it’s cooling ability – I took it off because I was cold! And even better, it didn’t look nearly as weird to wear out in public as the Elasto-gel Collar did.

I wouldn’t use the neck tie as my only cooling device if I was going to the gym or hanging out in weather that’s hotter than 80 degrees, but when it’s in the 70s or below (or if I’m inside and in air conditioning), I don’t even think about putting on the Secrets Vest anymore, it’s so intensely cold. It gets the job done on its own, and makes doing the dishes so much easier for me.

Another thing I really like about the neck tie is that you can easily take the Kool Max packs out of the tie to wash it — or to use the Kool Max packs with another tie/scarf! You don’t *have* to use the tie, though it is convenient. If you’re trying to look your best, you can even wrap those packs up in a fashion scarf that you have that won’t be damaged by water condensation. (No silk!)

Kool Max® vs Cool58™

The Kool Max® packs are *so* much colder than the Cool58™ packs. The difference is actually kind of stark. Come to think of it, there’s probably a difference of 58 degrees.

You can activate the Cool58™ packs, put em in the vest, and put the vest directly on your skin and it’s still comfortable. They’re designed to stay at 58 degrees. It’s a calming kind of cool — like drinking a nice iced tea on a hot summer day. It’ll cool you down, but it won’t make you cold. The stuff inside the Cool58™ packs will even squish and break apart if you press on it. The stuff inside the packs acts kind of like a wax.

Not so with the Kool Max® packs! They’re essentially blocks of ice, and are just that cold. You actually need a t-shirt or something under your vest or it can be too cold to handle. And that’s not a bad thing – especially when you’re trying to have an effective workout! 🙂 Wearing a shirt under your vest also keeps it cleaner longer.

At the end of the day, for folks like me who immediately get MS symptoms as soon as they’re a degree over their normal body temperature, I would recommend the Kool Max® line over the Cool58™ line every day of the week, just for sheer intense power of cooling. And I definitely would go for a neck tie, because I honestly didn’t even realize how incredibly helpful they could be.

For folks who don’t have MS and are looking for something to keep them cool at the gym, I think Cool58™ is a great solution. For folks with MS, Cool58™ is great if you’re trying to stay cool for short periods of time, are indoors, or aren’t being very physically active. Otherwise, Kool Max® works like gangbusters.

Thank you, Polar Products!

I want to take a moment to thank Polar Products for giving me the opportunity to try their other line of products and review them. This experience has been very valuable, hopefully not only for myself, but for other folks who are debating on whether or not to get a cooling vest because they can’t decide what kind! (And to those folks, I say, “Quit debating! Get a vest! They help!”)

In It For The Parking

I May Not Be A Rockstar But I've Got Rockstar Parking…

Tag Archives: self-care