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!

What To Do When You And Your Baby Are Sick

This is one of those posts I was kind of hoping I wouldn’t have to write.  But, alas, my little one got the flu and a bonus ear infection a while back and then just kept getting sinus problems coupled with (BONUS!) teething.  For all the fellow autoimmune disorder moms out there, you know what that means, right?  Yup.  It means you’re getting sick, too.  Over the course of the past couple months, I also got the bonus ear infection (full with perforated eardrum) plus a super sized sinus infection and limited edition stomach flu!  So here are my first-hand tips on what to do when both you and your baby are sick:

1. SANITIZE ALL THE THINGS

Not even kidding with this one.  My husband usually teases me because of my OCD and proclivity for decontaminating things, but this time of year no one is joking about the Purell!  Your little one, no matter the age, is carrying a copious amount of germs.  Whether your baby is sneezing in your face, putting everything in his mouth, or touching everything with sticky hands, he or she is spreading germs.  Your first line of defense?  Sanitize things and do it often.  Wipe down hard surfaces and plastic toys, wash bedding and soft toys, and pay special attention to communal areas (like the living room or bedroom) and shared objects (like remotes or pillows).  So even if you are already sick, this will help limit the length of your sicky days and will hopefully prevent it from being reintroduced into your family.

Dean knows what's up

Dean knows what’s up

2. Limit Time in “Danger Zones”

Whether you’re trying to prevent getting sick or you already are, it’s a good idea to limit your baby’s and your exposure to germy hotbeds.  Now may be the time to cancel play dates, say no to Chuck E Cheese, and avoid busy malls.  This goes both ways, too.  Not only are you trying to reduce your chances of getting sick, but you also don’t want to be “that mom.”  You know the mom I’m talking about.  It’s the mom who brings her clearly sick child to daycare or a group play date and seems oblivious to the fact that he’s snotting all over the toys and is coughing directly into your child’s mouth.  So yeah, don’t be “that mom.”  And limit time in potential danger zones so you don’t have to run into “that mom.”

You know the type. Won't even turn away to sneeze

You know the type. Won’t even turn away to sneeze

3. Rest, rest, and more rest

Easier said than done, right?  While I’m inclined to agree, there is one exception to the rule.  You can’t properly care for your sick child if you are running on fumes.  Take it back to the newborn days when you repeated this mantra like a bloodshot-eyed zombie “you sleep when the baby sleeps.”  If your baby is sick, hopefully he or she will actually be taking more naps than usual since they’re feeling pretty rundown themselves.  So forget dishes and errands.  Seize every opportunity you can to nap and take it easy.

God bless this girl for having the courage to do what we all wish we could

God bless this girl for having the courage to do what we all wish we could

4. Ask for (and accept) help

Thankfully I live within ten minutes of both my mother and mother-in-law.  And thankfully we all got sick when people weren’t terribly busy.  So thankfully (again) I had no shortage of help when my baby and I needed it.  I’ve said it before and I’ll say it again, don’t mistake pride for courage and remember it’s not a Mompetition (remember that one?).  No one is going to judge you for letting your mom watch the baby while you get some shuteye or if your mother-in-law graciously brings over dinner.  And if anyone does judge you, they are either jealous or… well no they’re probably just jealous and you should feel bad for them.

Let yourself feel a little braggy for a minute

Let yourself feel a little braggy for a minute

How to Survive Baby’s First Holiday

The holiday season is upon us once again!  This time last year I was on bed rest, beyond ready for the baby to come, and feeling like a beached whale.  This year, I’m always on my feet chasing my mini monster, beyond ready for a nap, and… actually I still kind of feel like a beached whale some days.  I guess some things don’t change *wink wink*  Another thing that hasn’t changed is the high level of stress that the holidays can bring.  So here are some tips to help you survive your baby’s first holiday season!

Plan Ahead

Nothing is worse than that ‘trying to keep my head above water’ feeling when it comes to getting overwhelmed by the holidays.  Okay, well maybe a few things are worse than that, like explosive diarrhea in a bathroom with no air conditioning or driving on I-4.  But holiday stress is still pretty gnarly.  One way to try and make the season more manageable?  Plan ahead.  Things become a lot less intimidating once you start breaking them down.

This cool cat is taking it one step at a time

This cool cat is taking it one step at a time

If the thought of driving 3 hours with your baby to go see relatives is keeping you up at night, try envisioning the actual situation in your head.  For instance, if you know you will be going somewhere your baby is unfamiliar with, bring a blanket or toy from home to make them feel comforted and safe.  Thinking ahead makes things less scary and helps you figure out what you need to do to be prepared!  Speaking of prepared…

Extra Clothes (for mom AND baby)

You can never have too many back-up outfits when you’re getting ready to take your baby on a trip.  Whether it’s a quick visit with Grandma or an all-day event, always pack extra clothes!  My son has acid reflux issues so he spits up frequently and thus goes through more wardrobe changes than Lady Gaga.  But it wasn’t until one day early on, when I was still a wide-eyed mom full of optimism, that he puked all down the front of my shirt (and missed himself, of course) and things changed.

I call it "The Embarrassment Sweats"

I call it “The Embarrassment Sweats”

 

I had tons of onesies for him in the bag, but nothing for me.  A lesson I only needed to learn once!  So save yourself the embarrassment and subsequent awkward explanations – “Oh this?  Haha yeah, it’s pureed squash and puke. Hashtag ‘mom life,’ riiiight?? Haha okay bye! – and pack a back-up shirt for you and your partner.

Don’t Underestimate People

If you know me or have read any of my previous posts, then you know I’m inclined to convince myself that the worst case scenario will happen.  I also carry a nice British-sized dose of guilt and awkwardness around.  So I tend to get nervous about how people will react when something bad (inevitably) happens.  What if my baby spits up on my in-law’s rug?  What if I have to say no to an event invite altogether?  What if we have to leave a party early because my son is reaching a nuclear reactor level meltdown?

It's about to get real

It’s about to get real

Having actually experienced all of these things, I can tell you firsthand the surprising outcome: everyone was actually super nice and understanding about the situation!  Unless someone is just a major Grinch (get it? Holiday humor!), people are actually fairly accommodating and sympathetic to life’s little mishaps especially when it concerns your health and/or babies. So breathe a sigh of relief and don’t underestimate the kindness of people.

Smile… a lot

This one may sound a little cheesy, but hear me out.  As a mom with multiple chronic illnesses, I’m often in some degree of pain or discomfort.  Don’t go pulling out the violin, I’m just stating fact here and I’m sure all you other moms with similar issues can appreciate my candor when it comes to health.  And since I’m no stranger to feeling uncomfortable, I’ve mastered my “serene” face.  However, upon looking at some photos a few weeks ago, I noticed just how calculated my “serene” face looked.  It was a cross between a mannequin and a the snob who just has to mention that she knows those are last year’s  shoes you’re wearing.

In my head, I thought I looked totally dignified

In my head, I thought I looked totally dignified

Basically, my face didn’t display the kind of mirth and joy one expects to see in family holiday photos.  You may think this sounds a bit superficial, but trust me.  Any other time of year I would say, “Hey, I’m gonna wear sweatpants, I don’t care.  Deal with it, blah blah feminism blah blah.”  But since this is my baby’s first holiday season, I don’t want the pictures of our new little family to remind me of my disease every time I look back at them.  I want the photos to capture all the wonderful emotions my heart feels in spite of my health.  So if that means having to summon the majestic power of a thousand bald eagles to keep a smile on my face for a few minutes, so be it.

Make time and BREATHE

If you remember only one thing from this post, let it be this.  Take a moment during this busy season and just breathe.  Everything will be okay and the world will keep on spinning even if things don’t turn out quite the way you had pictured.  If you find yourself getting overwhelmed, remember that it’s all temporary and things will be calmed down and back to normal soon enough.  Try not to let the little things get you down.

Rise above it!

Rise above it!

And most importantly, take time to just celebrate your wonderful baby and allow yourself to forget about all the hullabaloo for a little bit.  My partner and I always make a point to snag a moment where it’s just us and our baby.  Granted your baby will have no idea what’s going on, but it can be special bonding experience for you and your partner to revel in the awesomeness of parenthood.  Treasure this first holiday season with your little one because it only happens once!

Happy Christmas, Kwanzaa, Hanukkah, Bodhi Day, Pancha Ganapati, Soyal, Yaldā, Yule, and Festivus to you all!!!

(Sorry if I forgot anyone!)

Why It’s Okay to Complain

Maybe it’s because I’ve lived with health issues my whole life. Maybe it’s because I’m a new mom. Maybe it’s just me. Or maybe it’s not. But I’ve long felt the necessity to stay strong and never complain. Perhaps I felt as if I were betraying all the strong, fierce feminists that came before me. I’ve always thought that if I complained, asked for help, or took a break that it somehow meant I was giving in and letting my struggles get the best of me. Thankfully, I’m here to tell you that that’s just not true. It really is okay to complain sometimes.

It wasn’t easy to allow myself the freedom to complain. Honestly, it still isn’t easy even now. I still hesitate sometimes when asking for help. And when I do ask for help, I’m convinced that the other person is secretly mad that I bothered them. Again, this could just be me dealing with my own issues, but from the other moms and women with chronic illnesses I’ve talked to, it doesn’t seem like I’m the only one. So here are five reasons why it’s not only okay to complain, but it may just be the best thing you could do for yourself.

5. It Puts Your Pain into Words

So often, when I’m having a health issue or beyond exhausted, pain just becomes a part of this unspoken routine. Even before I had a child, I still couldn’t just take a day off whenever I was in pain or sick. If that was the case, I would have been home more days than I worked. So, you learn to just “deal.” But I did eventually get to my breaking point, as we all do. So I complained. And it was awesome! I got to put into words exactly what I was feeling which did two things: 1) it helped me articulate just how debilitating my health issues can be, emotionally and physically, and 2) it gave everyone around me a better picture of what I was going through and how to help. Contrary to popular belief, glaring at someone does not actually tell them what’s wrong.

4. Better Out Than In!

That saying has stuck around for a reason. It really is better to let it out than to keep it all in. When you keep things in – health issues, relationship problems, anger, sadness, etc. – it becomes toxic. And what’s even scarier is, if you hold on to the problem long enough, it becomes a part of you. One day, I caught myself in the mirror and realized I looked miserable. Not sad, not unhappy, not even angry, just plain miserable. I was holding in all this frustration that it was physically manifesting on my face and it wasn’t cute. So I wrote down a list of all the things that were causing me stress or pain. Then I showed it to my husband when he got home. The conversation that followed wasn’t exactly cute either, but I caught myself smiling for no reason the next day 🙂

3. Perspective

Not all the things I put on that list were really stress-worthy. Sure, some issues on the list were serious (like finances and health), but some were downright silly. I wrote “all out of Baked Lays.” It’s funny now, but at the time I’m sure it was a very legitimate thing to be stressed out about in my life. But reading it on that list not only let me see how small and easily fixable some of my problems were, but it also showed me (and my partner) that if you let things build up, it only takes one little thing to push it over the tipping point. That saying “the straw that broke the camel’s back” definitely fits here. And not to worry, I finally got my Baked Lays and all was right in the world again.

2. Healthy Alternative

I’m not suggesting everyone who bottles up their issues immediately becomes destructive, but I have seen firsthand the negative consequences that can come of it. One of the most important things I should point out first, is that this can happen to women and men. I’ve seen both mothers and fathers who never complain, yet they are visibly unhappy and some are even resentful or bitter. I’ve also seen pain eat away at someone until they’re just a shell of who they used to be. Partly because of what I had seen, I knew it was important to me, my partner, and my son that I never let myself become overwhelmed under the weight of chronic illness and motherhood. So if a little venting from time to time prevents you from a life of resentment or unhappiness, then I say it’s worth it.

1. Forming Bonds Stronger than Denture Cream

Believe it or not, giving myself permission to complain didn’t help just me. It was like a magic wand had been waved! Out of nowhere, all these friends and mothers were released from their guilt-ridden spell of silence. Suddenly I was getting texts and calls and Facebook comments and messages from both friends I’d known forever and people I’d just met saying things like, “Oh my God! I thought I was the only one!” or “Finally, someone is talking about it!” I began to forge new friendships and strengthen existing ones by simply “complaining” on social media about how real the struggle of balancing motherhood with chronic illness can be. So if you haven’t already, be the first person to break the “Guilt and Silence Spell” and enjoy the deep sense of camaraderie that you will find among friends new and old.

A Day in the Life 2.0

Once before, for funsies, I did a little glimpse into what happens in a given day of a high-risk pregnant woman.  Since everyone seemed to get a kick out of it, here’s a day in the life of a new mom with a chronic illness in 10 gifs!

1. Wake Up via Crying Baby

NOTE: This is what I want to say, but do not

NOTE: I would never say this, I just think it… very loudly

2. Calm Down Baby

It could all go horribly wrong at any moment

Much like trying to pet a wild animal, attempting to cuddle away the cries usually ends in scratches and more crying

3. Prepare Bottle

hot fuzz

Trying to function early in the morning whilst holding a baby in one arm is akin to trying to walk in a straight line after one too many lagers

4. Burp Baby –> Take Cover –> Change Baby

hammer

This one is pretty self explanatory

5. Attempt to Have Educational Play Time

Oh, Max, this is just the beginning of how uncool you'll think I am

Oh, Max, this is just the beginning of how uncool you’ll think I am

6. Try to Sneak Out to Pee/Eat/etc. While Baby Plays

If only I was this stealth

If only I was this stealth

7. Don’t Let Baby Kill Himself

So much energy, so little coordination

So much energy, so little coordination

Repeat Steps 2 – 7 ’til Bedtime

The days begin to blend together

The days begin to blend together

8. Do Any/Everything to Get Baby to Sleep

Praying is a viable option, right?

Praying is a viable option, right?

9. Wonder if Baby is Really Asleep

Babies are sneaky little tricksters, like mini-Lokis

Babies are sneaky little tricksters, like mini-Lokis

10. Rejoice! Baby is Asleep!

Be happy (even if it only lasts for a few hours), you've earned it!

Be happy (even if it only lasts for a few hours), because you’ve earned it!

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!

5 Confessions Of A Chronically-Ill New Mom

With the past few blog posts dealing with heavy topics such as inability to breastfeed and body image issues, I figured we could do with something a little lighter.  So here are some of my embarrassing, honest, awkward, and funny confessions as a new mom dealing with chronic illnesses!

1. Eau de What??

Some of you may know this about me, but I can’t smell (thanks, seizures!).  This has its pros and cons.  Pro: I can walk by a horrifically awful dumpster and not have any reaction.  Con: I can walk around for the better part of a day with baby puke on the back of my shirt and not realize it.  And if you’re thinking that example sounds oddly detailed, you’re right, because it actually happened.  Unfortunately I can’t always blame my inability to smell.  Sometimes I am fully aware of the pureed sweet potato on the front of my shirt, but I am just too darned busy to change.

Confession: Some days I may smell like a combination of spit up, poop, and old food. I don’t care. It happens.

I'm insecure, so this is what I imagine people are thinking when they're around me

I’m insecure, so this is what I imagine people are thinking when they’re around me

2. Nature’s Napkin

You remember when you were a mom-to-be and you could spend hours on Pintrest looking up cute little DIY projects and clever hacks for life with baby?  Oh, it all seemed so possible and so adorable!  Those were the days.  And then your baby sneezes with reckless abandon directly into your mouth.  Snot happens.  As was mentioned in the above confession, I am often covered in so many fluids, I would make a hotel room on CSI look clean.

Confession: When my son is sick, and he thinks my shirt is a tissue, I oblige because I’ll do anything to make him feel better.

Sneeze away, baby

Sneeze away, baby

3. Back Burner Syndrome

Let’s face it.  When you’re a new mom, you’ve got your hands full.  Slowly but surely, more and more things start to be placed on the back burner.  It starts with not sorting the mail on a daily basis, then leaving clean laundry in the dryer, and finally you’re just lucky if you can remember where you put something.  Some of that I can blame on the “Lupus Fog” or  my memory issues (thanks again, seizures!), and sometimes I’m just prioritizing.  Surprisingly, my house actually stays pretty clean, but I guess I just feel guilty about not being able to “do it all.”

Confession: Laundry and dishes can wait.  My baby’s needs cannot.

Dust it off, boo

Dust it off, boo

2. I’ll Tell You What I Want, What I Really Really Want!

While the Spice Girls may have had more R-rated things in mind, what I really really want is much more G-rated.  I just want to be able to go to the friggin’ bathroom for like more than five seconds.  And I know I am not alone in this, so don’t even try to play like you wouldn’t ugly-cry tears of joy if someone said you could have a luxuriously uninterrupted, hot shower.

Confession: I love every second I get to spend with my baby, but there is only so much my bladder can hold.

How I feel when I finally et to go to the bathroom

How I feel when I finally get to go to the bathroom

1. Silver Lining

Oh you know me, always looking for the silver lining.  This time I really have found one!  I used to get bummed (and borderline offended) when people would assume that because I don’t look my age and have crazy hair that I must be a teen mom.  I even had one older lady behind me in the check-out line make a snide remark to her friend, “It looks like babies having babies.”  To which her friend replied, “I’ll bet you it wasn’t even planned.”  Perhaps their hearing aids weren’t properly adjusted and they thought they were being quiet?  But then I realized, I hadn’t been a teen in almost a decade!  Those crones’ comments were more of a self-esteem boost than getting carded at a restaurant 😉

Confession: When rude people think I’m a “teen mom” they’re actually just telling me I look great for my age!  Thanks, haters!

AND I'M OUT!!!

AND I’M OUT!!!