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!

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What The First Week Is Like With A Newborn

Even though it was almost seven months ago, I can vividly remember what the first week was like with our new baby.  It was exciting, scary, emotional, and – oh yeah – exhausting!  I’m sure you probably could have guessed that having a newborn while living with a chronic illness wouldn’t be easy, but there’s something different about once you’re actually living it.

Too bad this isn't a real card

Too bad this isn’t a real card

This isn’t meant to scare you, of course.  I just want to give you a little heads up (no pun intended) on what your first week might be like.  Here are five things you can expect:

5. No Wonder Sleep Deprivation is Used as a Torture Method

Apparently your newborn has not yet heard of the Geneva Conventions.  If he or she had, then they’d know that sleep deprivation is listed as one of the forbidden methods of torture.  Yes, you read that right, torture.  And that’s just what it can feel like in the first few weeks when you are still adjusting.  Sleep deprivation can cause memory lapses, hallucination, confusion, irritability, headaches, and an overall case of the yuckies (not a scientific term).  So it’s no wonder that getting up to feed your baby every 2 hours, be coordinated enough to change diapers, and calmly console your baby takes a toll on your mind and body.

 

No joke I could fall asleep in 5 seconds

No joke I could fall asleep in 5 seconds

4. Sometimes Babies Just Cry

There really is no nice or easy way to say it, but there will be times that your baby just cries.  You go through the checklist in your head – Okay, the baby isn’t hungry, wet, too cold or too hot, doesn’t have a fever  – but still your little one is crying.  Like any new parent, I probably made unnecessary calls to the pediatrician wondering if there was something wrong that was making my baby cry.  After all, newborns can’t talk yet, so how would I know if my baby’s appendix was bursting or something?!  (Which is actually a real concern I had)  And just like every nurse, mother, and grandmother told me, sometimes they just cry.  Don’t ignore your instincts, though.  If you really think something is wrong, then please call your doctor.  But do know, that even if you’ve tried everything and your baby is still crying, it’s okay.

Foolproof method

Foolproof method

3. Now is The Time to be Selfish

As I’ve said in posts before, my tendency to be stubborn and even a tad prideful when it comes to dealing with Lupus and a connective tissue disorder has never had a good outcome.  Sometimes if I bend over, my hip dislocates.  Sometimes during a flare-up, my joints are so stiff it hurts to sit in one position for too long.  And as I’ve also said in previous posts, once a baby enters the picture, don’t turn down help.  So with a new baby in the picture, now more than ever is the time to accept any and every offer you get.  Whether someone offers to come over and watch the baby for an hour so you can sleep or someone wants to bring you dinner, SAY YES!  You won’t regret it.

Why, yes, I will take that sandwich

Why, yes, I will take that sandwich

2. Play Nice

With hormones and tensions running high, your filter may be a little more lax than usual.  You might find yourself snapping and speaking more harshly than usual.  And the little things that were once just mildly irritating are now cause for WWIII.  If you have a partner, the biggest piece of advice I can give you is to try and speak sweetly to them during this very crazy time.  Studies show that the first year of having baby is one of the toughest for married couples.  So while it’s completely understandable to worry about finances or to be grumpy about whose turn it is to change the diaper, remember that a little bit of kindness can go a long way.

cam feel to much

Let it out, honey

1. Routine is Your Friend

All the adorable Pinterest boards and all the articles with perfectly-styled nurseries left out one little detail: it’s just not realistic.  When it’s two in the morning and you need to change and feed the baby, you won’t be thinking about how cute your changing station set-up is.  In reality, the most convenient set up in the first few weeks for me was having the bassinet in the living room where I could crash on the couch.  The living room was right next to the kitchen, where I set up bottles with pre-measured water in them.  It may not seem classy, but having some semblance of a routine – something easy that didn’t require much effort – made a world of difference for me and my sanity.  I’m not saying my way is right, but just find something that works for you.  You don’t need to make things harder and you certainly don’t need to worry about appearances.  Do whatever fits you and your baby’s needs and I promise it will make things just a little smoother.  And if all else fails, just relax and think of this adorable kitten massaging a little pug dog.

kitty massage

5 Lies You’re Told

This is going to be a fun one!  Not only are we going to discuss the lies you’re told about being pregnant, but also about the lies dealing with illness.  Even before I was pregnant, there were all these misconceptions out there about how a “sickie” is supposed to feel and act and live.  Now that I’m with child, it seems like I’m fighting two different yet equally prejudicial battles.  So here are some things I’ve been told that have turned out to be completely false.

5. You Can (and should) Have it All

Now I’m just as much a feminist as the next gal.  I even hyphenated my last name when I got married!  If that’s not proof, then I don’t know what is 😉  But seriously, there’s this unreal standard that women are held to in society.  You’re told you should be able to juggle your personal and professional life – all while staying in perfect shape, of course!

Me thinks Photoshop has been used

Me thinks Photoshop has been used…

There is absolutely no shame in picking your own path, even if you feel like you’re admitting defeat.  The moment I realized it was okay for me to take time off work to focus on the health of me and my baby, I felt amazingly relieved.  Don’t fall prey to the lie that you are supposed to be some kind of “Wonder Woman.”  You’re growing a human inside of you!  How much more Wondrous can you get?

Real women. Real bodies.

Real women. Real bodies.

4. It’s Just in Your Head

Pre-pregnancy, when I was searching desperately for a diagnosis, I was told by many doctors and specialists that the joint pain, fatigue, and subsequent anxiety was all in my head.  I had never felt more confused, full of self-doubt, and even angry than when I started to let those doctors get to me.

NO IT'S NOT!

NO IT’S NOT!

Thank God (after quite a few years) I found a doctor that listened to and believed me and was able to give me my diagnosis.  Then, as a high-risk pregnant woman, I’ve also been judged by non-high-risk women telling me that I was just exaggerating my symptoms.  The insulting part was when they would tell me their “real symptoms” as if a) mine weren’t real and b) that their symptoms were worse than mine.  Honey, I would take your puffy ankles over my hip dislocation any day!  So just tune out the negative people in your life and don’t back down with your health professionals if/when they don’t take you seriously.

3. It’s All About the Birth

This was a new one for me.  Out of all the weird comments I was expecting to get, this was kind of a curveball.  While it’s true that “It’ll all be worth it in the end,” some people take it to the nth degree.  Some people made it sound as if the entire process of pregnancy is only about the end result.  So anytime I would be talking about a speedbump we had encountered in the pregnancy, the validity of my concern was immediately thrown out the window, because I should just “focus on the main event.”

The indignation of it all!

The indignation of it all!

But the entire nine months are important in their own right.  For instance, my husband and I have never felt closer than through these months of pregnancy.  I’ve gained a new perspective on motherhood from many late-night phone calls and talks with my mother and mother-in-law.  I’ve made deeper layers of friendship with the women in my life that are moms or moms-to-be.  I’ve even formed bonds with people on internet support groups where we can all rally around each other and our shared health issues. There are so many wonderful experiences I’ve gained through this pregnancy, that I would hate to think what would have happened if I only let myself focus on the end result of birth.  Live in the now and appreciate the process, warts and all!

This applies to so much in life

This applies to so much in life

2. Just Push Through It

Whether you are pregnant, have a chronic illness, or a combination of the two, you have had days where the word “pain” is an understatement.  For the average person, pain is your body’s way of saying something is wrong, but often we are told that as high-risk pregnant women, the pain is just something we will need to learn to live with.  While there are some things that I’ve gotten used to with my Lupus or EDS, I know from experience that not all pain is the same.  Listen to your body.

Some days are a 10

Some days are an 11

There is also this misconception that asking for help = weakness.  Admitting that your body can no longer do the things it used to isn’t being weak, it’s being honest!  To “push through it” and “suck it up” is not only delusional, but potentially harmful to both you and your baby.  So, no, don’t stress out over every little twinge of pain, but also don’t ignore the signals your body sends you.

1. You’ll Get That “Pregnancy Glow”

Maybe this one is just me, but one of the things I always heard about was how women will get this “glow” during pregnancy.  I imagined that when my pregnancy was in full swing, I’d have this cute little bump, radiant skin, and fabulous hair.  Well with a little help from MasterCuts, my hair is pretty fabulous, but besides that I don’t feel like I’m glow-y.

SHE'S SO RADIANT!

SHE’S SO DARN RADIANT!

And I’ve realized that’s okay.  At this point, I’m actually just stoked that my baby is staying healthy and is growing how he’s supposed to be.  Us high-risk ladies find happiness in the little things “normal” moms-to-be take for granted.  While some of my pregnant friends were talking about how their skin cleared up and their hair and nails seemed stronger than ever, I was over here being like “Hey I had a brief moment where my joints didn’t feel like they were on fire!  It’s gonna be a good day!”  It’s also good to remember that most celebs (and even some of our friends) just happen to have the extra time, money, and stylists to make it possible to look like an actual human in the morning.  For me, not so much.

I ain't even playin right now!

I ain’t even playin right now!

So in the end, no two pregnancies are exactly alike and we shouldn’t expect ours to hold up to the magical standards portrayed in movies and on magazine covers.  Your pregnancy is your pregnancy.  What is normal for you won’t necessarily be normal for everyone else.  This is basically how life goes, by the way.  The quicker we can acknowledge and accept that we make our own definition of what’s beautiful, the better.  Now I love the bags under my eyes, sallow skin, and swollen joints.  You know why?  Because it means the little life inside of me is still alive and kicking and my body is so busy keeping him healthy, it doesn’t have time to worry about looking “fresh.”  Flip the script and embrace it!