Is A Chronic Illnesses Really A Secret Superpower?

Have you ever had a “light bulb moment” about an issue that completely changed your perspective? I’ve been struggling with the challenges my chronic illnesses present for years, but motherhood was a curveball I didn’t expect. But was I really as unprepared as I thought?

Light bulb moment!

What if…?

 

Today I had the privilege of sharing my story of chronic illness, motherhood, and attempting to achieve superhero status. Head on over to Mom Babble to check out the post and let me know what your “light bulb moment” was!

How to Survive a Four Hour Drive with a Toddler

Prior to becoming a mother, I told myself I wouldn’t be caught dead driving long distances with a child. I figured I could put off accepting any kind of out-of-town social event until the kid was say, oh I don’t know – how old are they when they stop misbehaving? Oh right. Never. My genius pre-motherhood plan lasted less than two years. Last week my husband, eighteen month old son, and I set off on a cross-state drive for a wedding and I’ve lived to tell about it!

If you want to survive a long, family car ride without needing to call someone for bail money (presumably for assaulting whoever woke your sleeping child), then read on:

1. Expect the Unexpected

Before our trip could even get off to a proper start, I somehow managed to dislodge the right side of my front bumper. I’m talented like that. I’m like ninety percent sure it wasn’t my fault, but let’s not squabble over details. There we were: in the predawn hours, dragging rubber and plastic down the highway, praying to the travel gods the baby would stay asleep while anxiously looking for a safe place to pull off .

This looks safe, right, Honey?

“This looks safe, right, Honey?”

Despite neatly packing snacks, quietly transferring my sleeping son from the crib to the car, and carefully hanging fancy clothes without wrinkling them, I was not prepared for this. So what do you do when the proverbial fecal matter hits the fan? Aside from performing a ritual goat sacrifice, I strongly suggest you embrace the chaos. The more you try to fight against the craziness, the less calm you (and everyone around you) will be. Just try to roll with it – even if you’re screaming internally.

Just breathe in and out.

Just breathe in and out.

2. Breaks. SO. MANY. BREAKS.

Keeping in theme with the previous rule, you’ll need to adopt the mantra “F*** The Schedule!” When the mini vehicular catastrophe was finally remedied (thank you, zip ties!), we were a solid two hours behind schedule. I thought to myself, “That’s okay. We factored in a bonus hour for breaks, so we’re really only one hour behind. I can make that up with clever driving and no breaks. It’ll be fine!” Oh how innocent I was.

So young, so full of hope I was.

So young, so full of hope I was.

A funny thing happens when you try to drive long stretches without a break. Perhaps “funny” isn’t the right word. Pee. Yup that’s the word: PEE. Pee happens when you don’t take breaks and you have a toddler with the bladder the size of a thimble. Unfortunately my seizures left me with the inability to smell (True story! Ask me about it some time) which meant I was blissfully unaware of the urine soaked car seat and horrifyingly wet toddler until it was too late. Do yourself (and your upholstery) a favor, and take as many breaks as necessary. Those with functioning olfactory receptors will thank you.

WHY, GOD? WHY?!?!

WHY, GOD? WHY?!?!

 3. Baby = “Get Out of Jail Free” Card

Okay, this one may sound like I’m a horrible person – and maybe I am, who cares? – but one of the perks to having a baby is that it is the best excuse you’ll ever have! I’m not recommending you lie and say your baby is sick to get out of a party because, ya know, karma. But if you have a legit situation which has created some negative outcome, don’t be afraid to blame your exit strategy on the baby. Just don’t get drunk with power.

drunk with power highlander

It’s deceptively easy to use the excuse too much.

The final key to being able to survive a long drive with your toddler is to not worry about what others may think. Merely showing up in one piece should be accomplishment enough, in my opinion. Yeah, we were late and probably smelled of baby pee, but we MADE IT! The ride back? Now that’s an entirely different story…

How Chronic Illness Prepared Me For Motherhood

Math and I aren’t really best friends.  In fact, we’re barely on speaking terms.  There is one thing that Math and I have in common: a love of Venn Diagrams.  Get it?  “Have in common” haha, oh man, puns.  Point being, a light bulb went off for me recently when I was thinking about how my chronic illnesses interact with my new-found motherhood.  I started thinking about what the two things have in common and how having a chronic illness got me ready for the challenges of motherhood.

Thank you, MS Paint

Thank you, MS Paint

5. Just Dealing with It

Not all of us are lucky enough to live life without worrying about finances.  For me, I worked two jobs to put myself through college.  Looking back, I have no idea how I managed to do all of it.  Actually, I have no idea how I manage to accomplish a lot of things.  But, just like many people with a chronic illness, when I am told I can’t do something, I am just that much more determined to do it.  So you learn to deal with it.  Have to pull an all-nighter to cram for finals but you’re in the middle of a flare-up?  Tough cookies.  There are just some things in life that you really can’t bail out on no matter how much your chronic illness sucks.

If only I could fix my scoliosis like this

If only I could fix my scoliosis like this

And learning to just deal with the suckiness of it all turned out to build up this thing I call a “Stamina Callus.”  Just like you need calluses to be an awesome guitarist (I think?  I don’t know I’m not musical), you need to have a certain stamina level to survive motherhood.  So when the baby needs to be fed and I’ve only had 2.7 seconds of sleep, I can just do it.  Thanks Stamina Callus!

4. Compensating

Compensating, to the average person, means to counter-balance something.  To a person with a connective tissue disorder, it means constantly shifting your weight or changing your stance in order to prevent or manage a dislocated joint.  I was diagnosed with Ehlers-Danlos when I was a teenager, but I had been living with it my whole life, obviously.  Even from a young age, I remember wondering how my T-Ball teammates could just jump off the bench and run on the field.  Whereas if I had done that, my hip probably would have given out and I’d just wipeout before even exiting the dugout.

So funny, but so true

So funny, but so painfully accurate

So bending over to pick up a fifteen pound infant a gazillion times a day really didn’t seem so bad after a lifetime of faceplants.  I already had experience balancing, being uncomfortable, and knowing when to ask for help to avoid a really bad spill.  And trust me, once you have such precious cargo in your arms, you become even more aware of the dangerous, slippery world around you.

3. Sleeeeeep

Clearly nothing compares to the lack of sleep you experience once you become a mother.  But I would bet good money (like four bucks, maybe?) that the fatigue associated with Lupus and other autoimmune disorders could be a close second.  Lupus fatigue also comes with a pesky side of anxiety.  It’s like you can feel it coming on, yet you know you have little to no control over it.  Imagine you are driving a semi-truck on an icy road on the side of a mountain and right as you are about to go around a scary curve, this blindfold begins to descend over your eyes and you are defenseless.

Supernatural GIFs are always appropriate

Supernatural GIFs are always appropriate

The fatigue/anxiety combo actually was a pretty accurate test run for being a new mom.  In those first weeks, you’re desperately exhausted, yet every time your head hits the pillow, you immediately panic thinking the baby needs you.  I’m not gonna lie.  That panic is still with me almost eight months later.  I still hear “phantom cries” and get up to check on the baby “just one more time.”

2. Must… Remember…To…?

Have you ever walked into a room and completely forgotten why?  Well, some people with chronic illness experience these “mental fog” states on a fairly regular basis.  With the amount of times I’ve searched for my keys whilst holding them in my hand, you would think I was driving to get the early bird special with my AARP discount.  Not only do we experience lapses in both short and long-term memory, but we can be absent-minded as well – and not in that adorably awkward, professor way.

Totally believable

Totally believable

Long before pregnancy or motherhood had me putting dishes in the fridge, I was bringing the remote into the bathroom.  That makes for a really weird sentence, but you get the point.  I guess I just wasn’t as rattled or shocked by memory lapses since that had become the norm long ago.

1. Time for an Epiphany

Once, when I was walking across the stage at my hard-earned college graduation, I suspected it.  Then, again, after fighting through red tape and regaining my license after seizures, I wondered about it again.  But it wasn’t until I held my child in my arms did I realize my suspicions were true: “I AM A FREAKING SUPERHERO!”  And guess what?  You are, too!  Women living with chronic illness and balancing motherhood are amazing.  We are warriors, we produce life, we rise from the ashes again and again.  Can you tell me how that’s not the making of a superhero?  Exactly.  So go find your cape because it’s about time you accepted the truth that you are an amazing forth with which to be reckoned!!!

Whoooo! Go girl!

Whoooo! Go girl!

The Dirty Truth About Breastfeeding

Breastfeeding – whether you’re a fan or not, one thing is for sure: everyone seems to be talking about it. For many mothers around the globe, this is a wonderful celebration of the emotional and physical bond shared with their child. Breastfeeding pride is everywhere you look these days. From Instagram protests to celebrity magazine spreads, this topic has caught some media attention, as well. Olivia Wilde’s photo shoot in a diner seems appropriate since that’s the purpose of breastfeeding: nourishment.

via Glamour

via Glamour

But here’s the dirty truth about breastfeeding: not all women are able to do it. I’m sure breastfeeding is an amazing experience between a mother and her baby. And I think I may have even had a small glimpse of it. But that’s all it was for me, a brief glimpse. I cradled my son, tears streaming down my face, asking the heavens for a miracle while he cried, hungry and unable to receive any life-sustaining milk from the very body that unceasingly nourished him for nine months.

But the milk never came.

Don’t get me wrong, I am in total support of breastfeeding and completely aware of all the benefits. I could even cite you ten statistics off the top of my head about how awesome breastfeeding is. I am full of this knowledge for two very important reasons: first from the overwhelming amount of pressure and opinions from doctors, nurses, lactation consultants, other moms, friends, family, strangers, etc., and then from the debilitating guilt that followed and had me desperately searching the internet for answers.

Bottom line, I cannot breastfeed. My heart breaks a little more every time I admit it out loud. But my shame diminishes just a little, too. You are not a whole woman; you’re not even a real mother.” Those thoughts still poke their way into my mind every so often and it’s difficult to ignore when tags like #FreeTheNipple started trending on Twitter and famous celebs started posting breastfeeding pictures on social media. All this pride, all this “I am woman, hear me roar” type empowerment can be both intoxicating and poisonous at the same time. I could scroll through beautiful photos of women breastfeeding their children for hours, envying them and hating myself at the same time.

The dried up desert aka my mammary glands

Dried up desert lake beds aka my mammary glands

If I’ve said it once, I’ll say it again: you are not in control of your body when you have a chronic illness. I know this, but I am stubborn. And bitter. And I think all of us with a chronic illness are better off for being so insanely optimistic even if we never get the results we want. I wanted so badly to breastfeed. I wanted it so much it made my insides hurt (or maybe that was just the c-section). Three intimidating lactation consultants, some very caring friends, a connective tissue disorder, multiple breakdowns, a gazillion hippy-dippy remedies, and one empathetic mother later, I came to the conclusion it just wasn’t in the cards.

Shut up, tarot card!

Shut up, tarot card

The moment I finally resigned myself to my milk-less fate, I felt like an udder failure. Get the pun?  Eh, this blog post needed a lame joke, but I digress. It took my very kind OB-GYN and my own mother to pull me out of my pit of despair. My doctor told me that many women are unable to breastfeed and that it’s common for women with Ehlers-Danlos Syndrome to have issues with breastfeeding. The connective tissue disorder can make it difficult, if not impossible, for the mammary glands (which are made up of connective tissue) to produce and maintain a milk supply. So that helped on the factual, medical side, but my hormonal, emotional side still needed consoling.* Thankfully my mother was there for that. Though her story is not mine to tell, I can say that I trust her completely when she said there was nothing more I could have done and it makes me no less of a “real” mother for it. So let me tell you, if you haven’t been told already, you are a real woman, a true mother. Being able or unable to breastfeed does not make you any more or any less of a mother. Shame on anyone who would try to tell you otherwise. While I still openly support breastfeeding, I wish there was someone like me on the cover of a magazine. I wish I could see a woman – flawed, chronically ill, unable to breastfeed, tired, and with loose skin where a tight stomach once was – in the spotlight, praised by the media and told how beautiful she is. Until that happens, you have me, telling you the dirty truth and reminding you that you are beautiful. 

 

*If you feel you are unable to cope or are having serious concerns after having your baby, you may have postpartum depression. Please don’t hesitate to reach out for help. Click this link for resources and support.

Goodbye / Hello – A Tummy Timeline

Warning:  This post contains a large dose of whining, a pinch of self-loathing, and a heaping spoonful of hormones.  Read at your own risk.  

Today’s post is in honor of National Love Your Belly Day! Actually I have no idea if that’s a real “day” or not, but it sounded good, right?  Fake day aside, I was feeling a bit down in the dumps about my lovely lady lump-iness (aka my post-baby body) when I went swimsuit shopping recently. You see, having a chronic illness had already prepared me for what it feels like to be a captive in my own body.  When you live with an illness you feel neither in control nor certain. Yet one thing was always for sure, though: when I went shopping, I never had to try anything on. I was always a small.  Pregnancy changed that.

Not that I would ever be bold enough to step outside of the dressing room

Not that I would ever be bold enough to step outside of the dressing room

But let’s take it back a little. Because you didn’t just wake up with this body one day. It took nine months to expand and seemingly a lifetime to learn how to deal with it after. Remember a time, before the embarrassing dressing room meltdowns, to the time right when your body was beginning to change? I call it the ‘it’s not a food baby’ stage. This is probably just me, but I found myself to be incredibly weirded out by my no-longer flat stomach. I was so unfamiliar with this that I felt the desperate need to constantly tell people that it was a human baby, not a food baby. People would laugh it off or say I was silly, but I saw their judgmental eyes looking at my poochy tummy.

The subtle art of the "side eye"

The subtle art of the “side eye”

Then FINALLY my stomach went from being a behind-your-back conversation starter (is she pregnant?) to being a legitimate baby bump! It was just so cute and I loved showing it off all the time. “Oh this?  Yeah, it’s my super adorable baby bump. No big deal.” And as my baby bump grew, so did my confidence. Aside from the unending nausea and chronic aches and pains, there were distinct moments of that pregnancy glow I’d heard so much about!  Or maybe I was just shiny and sweaty from all that puking. But still! This was a good time for my baby bump and me!

YAAAASSS

YAAAASSS

Just as I started to hit my peak of awesomeness, a beached whale began replacing me in the mirror. My bump wasn’t a bump anymore; it was a mountain. And then there were all the lovely things that came with my growing stomach: swollen ankles, puffy feet, and cottage cheese (aka cellulite) started showing up in unexpected places. I even swore my armpits got fatter.  I have no scientific proof of this, but since it was the one place I could still shave without pulling a muscle, I became quite familiar with it. And let me just say, the shaves got trickier because my arm”pits” were more like arm”lumpy-waterbeds.” Maybe that was TMI, but you can’t honestly tell me that as you entered those final weeks of pregnancy you didn’t become crazy analytical of your body. With it being a high risk pregnancy, I was practically helping the doctor by being so focused on my ever-changing shape – even if it meant I was constantly breaking myself down in the process.

Mirror Meltdown Amnesia is quite normal

“Mirror Meltdown Amnesia” is quite normal

I remember thinking to myself that things would start to go back to “normal” once the baby was born. I’d be able to sleep on my stomach again (ha, sleep, how naive I was) and wear things besides flowing dresses and stretchy leggings. I also remember looking down immediately after being cleared to leave recovery, seeing a mushy blob of a stomach, and crying. Logically I knew that my stomach wasn’t going to be firm and flat. Reason told me that no one would judge me for still wearing maternity pants. But logic and reason mean nothing to the hormonal brain of a woman with low self-esteem. Everyone even told me that I looked good for just having had a baby. They’re just being polite, I told myself. Only I knew the real truth. Only I knew what my stomach really felt like. My body was “home” and my stomach was an uninvited stranger. How was I back to my pre-pregnancy weight, yet the muscles felt like they had been spread apart? My skin now felt uncomfortably soft and malleable.

Pity Town population me

Pity Town population: me

Want to know the shocking twist ending to this blog post?  I’m not going to say that one day I woke up and there were rainbows and sunshine everywhere. I won’t say that I walked out of the store with a brand new, super cute bikini. I won’t lie to you or myself and say I am in love with and proud of my body. It’s a work in progress. I remind myself that my body, my “home,” also became the nurturing home to my son. I also remind myself that things could have been so much worse during the pregnancy and even afterwards. I feel shame, sometimes, for being so superficial. Yet I feel comforted when I open up, like I am now, and find that other mothers – women I deemed flawless – have the same struggles. So let’s get back out on the beach and start taking full-length selfies again. We should share our battle scars, talk about the Play-Doh tummies we have, and make a safe neighborhood for our “homes.”