Being a Mom with RA

I've been wanting to write this post for a very long time... but it's something I had to wrap my head around and decide exactly what to write and how much to divulge.  So I decided to divulge everything... full transparency... even in those places I'm most complexed about.

I have had Rheumatoid Arthritis for over 10 years now.  I was diagnosed at 17, after having unexplained joint pain that was debilitating.  Before being diagnosed, there were days I couldn't stand up from being on the floor, or close my car door.  I didn't understand what was going on, but I knew it was severe.  After learning of my disease, I began to take action, but for the first few years nothing really seemed to work.  My pain was so extreme that by the time I was 19 I could barely walk.  I couldn't climb stairs, I couldn't wash my hair, I couldn't get up off the toilet.  It was the hardest time in my life.  I was a young woman with my whole life ahead of me, and yet I felt like I was trapped in the body of a dying 90 year old.  I fell into a deep depression and turned to things I am not proud of.

Then I found a medication that finally started working for me... Enbrel.  After taking my first dose, I immediately felt a difference.  Shortly thereafter Mauricio and I became involved and then I graduated college and decided to move out.  Only a few years before I thought I would never have a job, have a boyfriend, be independent... and then I was doing it!

After getting married, I began researching the affects of my medication while pregnant or nursing.  We knew we wanted to have kids and the way I saw it was, I'm as strong now as I'm ever gonna be, and I'm not getting any younger, so let's do this!  I learned that although Enbrel was a class B drug and mildly safe to take during pregnancy, it's counterpart, Methotrexate was not.  Enbrel and Methotrexate work hand-in-hand to attack the disease and the inflammation.  They really are super drugs... but in pregnancy, they really are super dangerous drugs.  In fact, Methotrexate is also commonly given to terminate a pregnancy when there is a problem, such as a tubal pregnancy or a chromosomal disorder.  There was no way I could safely take these drugs and have a baby.  I wasn't even going to risk it with taking just Enbrel, because seeing as it's a relatively new drug, new tests and research are coming out daily.  And, I just learned yesterday that they have recently linked women taking Enbrel while pregnant to children with Lymphoma.  HOLY COW! So glad I trusted my instincts!

So, in October of 2008, I took my last dose of RA medication.  I trusted God to reduce my pains and get me through.  It's also known that RA goes into remission during pregnancy.  There is no pain... but the disease is still active and causing damage.  I got pregnant that month and felt fine.  My RA stiffness and pain didn't return until roughly 6 months after Marco was born.  At that time, I  made an appointment to see a Rheumatologist, but it took so long to get me in, that by the time my appointment came along, I was pregnant again!  So, I didn't get back on meds.  And I'm still not on any meds... 11 months post pardum.  That's 35 months with NO RA MEDICATION!  Amazing!  God is so good.

But now it's time for me to get back to business.  This disease has been super active during my hiatus and has caused irreversible damage.  At this point, the only way to have "normalcy" is through surgery.  I'm not ready for that yet, but I know it's in my future.  Let me show you some of my most obvious damage:

Here we have some pictures of my hands.  That's as much as I can open them.  As you can see, the left one is FAR worse than the right.  (the pics were taken on my computer, so your left is also my left... like a mirror).  I have trouble typing... every time I type the T, my middle finger touches the 4... DANG IT!  I have trouble playing the piano... with the left hand I usually just play root notes.  I can't open ANYTHING... sippy cups are my nemesis!  Changing diapers takes forever.  Please tell me why baby clothes have to have so many blasted snaps?!  And car seats?  Oh, my... I can only open ONE kind of car seat clicker... and thankfully they make it in infant and toddler sized seats.  It's the Graco one that you push down instead of pushing in.  But even that, I need to use two hands.

My mouth can not close in the front.  Notice in this picture... my molars are touching, but my front teeth are not.  That's because the joint that connects your jaw (by your ear) has disolved.  It's gone.  Thus, it has moved my bottom jaw back and created a gap in the front.  My face has changed COMPLETELY from before I had RA.  The shape is drastically different.  (one day I'll do a before and after picture).  Although you may think, ah, that's silly, believe me... you want your front teeth to close.  You know how difficult it is to eat pizza?  or a sandwich?  Tomatos slide right out of my teeth.  Also, I'm afraid that since my top teeth never have any pressure on them and aren't used, eventually they'll die.  That'll be a sight!

Here's a picture of one of my feet.  All the toes are crunched and shifted outward.  I also have a nodule on the outside of my foot that has grown to compensate for my weak ankles that shift my weight to that side.  I have already had that nodule removed... and it grew back in less than a year.  I am unable to wear any kind of heals... not even a wedge.  I mostly wear flip flops because they don't constrict my toes and offer me the most comfort, although they do not offer any support.  I am fearful that my feet will be my biggest challenge, obstacle and problem.  When your feet hurt, your whole body hurts... you just can't function.  I'm afraid that one day I'm just not going to be able to walk anymore. 

Living with RA has been the biggest challenge of my life.  Being in constant pain and seeing your own body transformed with nothing you can do about it is a horrible feeling.  I have always strived to not let anything hold me down.  I do not want to be defined by my disease.  I did not want my disease to dictate whether or not I had children.  And now, I do not want my disease to dictate whether or not I can play with my kids, or take them to the park, or take them to Disney World.

I WILL do everything a "normal mom" does.  I WILL change all their diapers. I WILL change all their clothes. I WILL put them in and take them out of the car seat.  I WILL put the stroller in my car.  I WILL take them to play dates.  I WILL get on the floor with them to play.  I WILL do the hokey-pokey.  All these things, that for "normal moms" come easy, for me is not so easy... for me, it's a daily challenge.  But for me, I know that my strength comes from the Lord.  There is not a doubt in my mind or heart that HE is the only one that makes what I do possible.  How can I not be amazed at his grace, when I look at myself and I KNOW that I shouldn't be able to do these things... but I do, and I do them well.  Only by Him.


Heloisa said...

My dear niece Nicole!
Did you know that I have a deep admiration for you ????, I remember the day I met you ... I was amazed at your beautiful smile and then with the wonderful person that you are! The great love that unites you and Mauricio!, You have come so far! and God brought them together in a way so fabulous ... Nicole, you are an example for me, for our family ... you are perfect for us!! and you are! .... and I love you very much, and pray for you every day! and you are absolutely sure that God will be providing their healing, as of today I declare IN THE NAME OF JESUS​​, Nicole, you're already healed AMEN?? and save a thing for you: you are unique, wonderful, loved and Son of God!

D-L said...

Hey girl! We sure are going to miss you at MOPS this year! Thank you for this transparent post. You are awesome! I also want to tell you about some great shoes called orthaheel sandals. Heck in Miami you could wear them year round. They are super cute and have great arch support. Just google them at zappos. They are a little pricey but when your feet hurt, it's worth it! I have plantar fascitis and can't walk in the morning but if I put these on it's much more bearable!

Unpolished Parenting said...

You are amazing and strong and your faith is beautiful. :) Thank you for sharing yourself and all of the support you've given to me.

jessica ♥ The Fevered Pen said...

*hugs* I know how it feels to have a chronic pain disorder, so tons of hugs!

Allie said...

Wow how am I now just reading this! You are amazing for sharing this Nicole! I cannot even imagine your daily struggles, you are such a warrior! You rock mama! Xoxoxo

Erica Diaz said...

You are truly an amazing woman of God! With all that you have been through, you are still so positive and faithful. Thank you for sharing your story! You are touching many lives! Continue being a light unto this world!! You are beautiful.