Saturday, February 25, 2012

The unexpected...

There are plenty of unexpected moments involved in motherhood.
Ahhh, the unexpected joys! The flutter in your belly that you thought was a result of bad fish tacos, but turned out to be little baby movements soon to turn into swift Pele-style kicks to various organs and nerves. The first time you hear your child clearly utter 'Momma' instead of incoherent baby babble. The first time your toddler poops in the potty and you dance around the bathroom like a teenager at prom, complete with doing the running man (ok, yes, that was me this week).
But there are unexpected pains, too. The sound of your baby crying hysterically at 3am and nothing you do will soothe her. When you first hear of your child being excluded on the school playground and you know you probably can't track down the child's parents and straighten them out. When your nose realizes your son has had his first potty training accident in your kitchen pantry while playing hide-and-seek (yes, also me this week).
Most of these are things that other mothers will experience in one form or another. But sometimes motherhood can deliver something entirely unexpected...
My first pregnancy wasn't all that wonderful, but I made it through and was induced at 37 weeks. A healthy, happy baby girl was the result and all the craziness of 6 weeks of bedrest and 80 pounds of baby weight was forgiven and forgotten.

We experienced the same things most parents experience the first few weeks. Like the sleep deprivation that people warn you about, but you can't even possibly understand until you've experienced it for yourself. Then you realize why that's used as a torture method for prisoners of war. And the agony of making sure the baby is eating enough. Which side did I last feed on? What time was that? How long was the feeding? What day is it? How many poopy diapers? What? Are you talking to me? Oh, sorry, I think I fell asleep.
But, we also experienced the intense joy of being parents. In all seriousness, while we were still pregnant we looked at our 75 pound mutt of a dog and said to each other, "How can we possibly have rooms in our hearts to love someone more Willie?" Seriously. We were those dog people that didn't understand what was so great about kids. So we got to experience the amazing love that grows inside your heart and blossoms between husband and wife to where you realize,"Oh, we created new life. That was cool."

But while basking in that afterglow, my journey into motherhood was thrown a curveball. In the middle of the night I woke up to feed Lily and noticed my ankle hurt. I thought I must have stepped on a dog toy going to her bassinet. "Stupid dog", I thought. The next morning I woke up and could not even stand on the ankle. It was swollen and extremely painful and I just couldn't believe my luck that I had somehow broken my ankle with a 4 week old baby to care for. My husband stayed home from work and we went to the hospital and after x-rays no fracture was found. I bounced around to several different doctor's and was put on a crazy dose of steroids to relieve the swelling. Then the pain and swelling travelled to the rest of my body. My knees, my hips, my fingers and wrists. I got to where I was afraid I may drop my baby and didn't quite trust myself to take care of her. Fortunately my parents live close by. My mother was almost a surrogate mother to her new grandbaby and my caretaker for a few months. I couldn't get out of bed to even change a diaper at one point. My mom brought her to my bed so I could feed her and try to be a mom. Once I could get out of bed I couldn't walk up or down the stairs without sitting down and going down one at a time on my bottom like a 2 year old. I couldn't sit down or stand up without grabbing onto the walls and using my arms to pull my weight. My mom and my husband were like my right and left arms. Without them I don't know what would have happened to me.
Lots of couchtime! 

Those were some dark days. I cried a lot. I cried at every doctor's appointment and yelled and wanted answers and was frustrated and confused. What disease do I have? Am I dying? Why can't you fix me? I have a baby! Don't you see I need to be a mom? Why me? Why now? What did I do wrong?
Then it became a game of treating the symptoms without a diagnosis. Just get the joint swelling the go away and then we'll figure it out. If you've ever been unfortunate enough to go on prednisone for anything, you know that it is a crazy drug. It makes you hungry, irritable, unable to sleep, emotional and fat. Yes, fat. My face puffed up like I was having an allergic reaction to bee sting. So, instead of losing weight after having a baby, all the weight stayed on and I actually looked fatter! How encouraging for a postpartum first-time mom!
My balloon face...
A few months later I started to slowly ween myself off the steroids and started methotrexate, a drug used in chemotherapy for cancer patients. It's highly dangerous to breastfeed while taking this drug so I had to weigh all my options and finally decide to quite breastfeeding, cold turkey, so that I could give myself a chance at being healed and be a better mother to my child. I fed my daughter for the last time in my mom's car in the rheumatologist's parking lot. It was a terrible decision to have to make and I was angry about it and I'm crying right now even thinking about it. But I would do it again in a heartbeat. It was a leap of faith. I was lucky enough to find a doctor who would pray with me for my healing at each appointment. I knew that God was able to do immeasurably more than all I could ask or imagine so surely he would heal me.
Well, it took several months and a few more medications, but I was finally able to return to walking up and down the stairs, driving a car, changing diapers, rocking my baby and returning to work full-time. I was lucky enough to go to the Mayo Clinic in Jacksonville and see one of top rheumatologists in the country. But he concurred with my local doctor that I did indeed have a HLA-B27 associated undifferentiated spondyloarthoropathy. Say that 3 times fast. I dare ya.Well, it's basically treated the same as rheummatoid arthritis, so that's usually what I tell people so I don't get the head turn of confusion look. I'm blessed to have the opportunity and the health insurance to take an extremely expensive medication once a week which has prevented any joint damage. I deal with chronic pain on a daily basis and moderate flare-ups from time to time. I faired better during my second pregnancy, but I almost went blind in one eye towards the end of the pregnancy because of an acute case of uveitis. Another fun symptom I didn't really know about until it happened. But it was nothing a steroid shot in the eyeball couldn't take care of! No biggie!
And I share this with you not so that you feel sorry for me or pity me in anyway. I mean, I probably wasn't going to climb Mount Everst or run a marathon, but I did enjoy it as being a possibility. In fact, I have altogether stopped praying that God would miraculously heal me from this disease. My prayers have shifted to:

Father, if you are willing, take this cup from me; yet not my will, but yours be done. Luke 22:42

That God would use my brokeness to glorify Him in someway. My point in telling you all about this is because I think there are so many other women out there who have experienced the onset of autoimmune disease as a result of pregnancy. I have stumbled upon many of them since going through all of this. Some of them may never develop symptoms as severely as I did. Some my go through exactly what I did. But the desperation and frustration and confusion that goes on during that crazy time of unknowing can be helped by being in community. I had no community at all. If fact, I had almost no mommy friends at all. I searched all over the internet to reach out to anyone who may have gone through this to try to find answers. So hopefully this story isn't told in vain and can help someone out there who needs hope, who needs community during a dark time. And if you of an online community for this please leave it in the comment section!

And to those who are in my shoes,  let me pray with you. Pray for you. Pray for your family.

And eat a Bon bon, of course.
Or a cupcake, perhaps


  1. Oh Stacie, I just want to hug you right now! I didn't know you when Lily was born and can't believe all you went through. I am hoping and praying that each day gets better with less and less pain. You are an amazing mommy!

    1. Thanks, Lynn! Virtual hug! I'm so blessed by the amazing people I have in my life now! So grateful!

  2. You went through so much! I am so glad He was by your side.