Saturday, August 11, 2012

Top Ten

Years ago, I started doing research on what it would mean to become pregnant while living with MS. At the time my disease wasn't "stable",  and my doctors agreed it wasn't safe to start trying to conceive. So I busied myself with gathering as much information as I could get my hands on about what happens when a woman with MS decides to try and carry a child.

Turns out, there ain't a heck of a lot of info out there
In fact, women who get diagnosed with MS and then decide to have a baby are actually a very small subgroup. My neurologist and ob-gyns could count on one hand how many they have ever had.

On one hand, I totally get it. MS is devastating and one of the most unpredictable diseases out there. You don't know if you will sail along fine for years or if tomorrow you will wake up with certain limbs not working, or not be able to see. And from what I hear (and my many friends tell me) parenting brings its own set of unpredictable challenges. It's a lot of unpredictability for someone to consider undertaking.

But if you are reading this, you probably know me well and you already know I rarely shy away from a challenge. Certainly not one as worth having as this.

Furthermore, most of the studies and medical journals I read stated that during pregnancy, most MS patients feel amazing. Relapses are rare during these 40 weeks and, in fact, many symptoms (even ones we have had since Day One) mysteriously disappear during pregnancy. Sadly, they usually return with a vengeance along with a 50-60% risk of relapse after the baby is born. But, seriously - the past 5 months - it is the best I have felt in 5 years. I have some symptoms off/on but nothing like I normally have. It's like an MS vacation!

So even though we are a super small subgroup, and I can understand an MSer's reticence to start a family, I would argue that in many ways, women with MS are as capable of handling pregnancy than anyone. Maybe in some ways, more so. I got to thinking about it and it inspired a Top Ten List.
So for your reading pleasure...

Top Ten Reasons Why Women With MS Are Already Prepared For Pregnancy: 
10. We are expert patients. We have spent years of our lives in doctor's offices and navigating the medical system. We know the drill. We know to ask lots of questions, take good notes and we aren't surprised by waiting hours to be seen by a physician.

9. We already meet our deductible every year. Easily done when our medications cost upwards of $9000/month! So while it might be a shock for a healthy person to shell out $3000-$4000 for their labor/delivery hospital stay, many of us will receive a  $0 labor/delivery charge. Sure nice for a change!

8. What body image issues? If you have been a generally healthy person with normal weight your whole life, then suddenly gaining upwards of 30 lbs could be a hard adjustment for your ego. But I say, give me pregnancy weight gain any day of the week. Adjusting to my body image as a disabled person with a paralyzed arm who walked with a cane was 20 times harder than gaining 30-40 lbs for a really good reason. Bring on the cookies.

7. Bladder issues. Been there, done that. MSers are sadly used to our bladders not always being under our control, especially during relapses. We already mentally take note of the nearest bathroom everywhere we go, so we are totally prepared for pregnancy bladder!

6. Pain and discomfort..but actually for a purpose. Yes, pregnancy is uncomfortable and often painful. As I write this, I have gotten no more than 3-4 hours sleep the past few nights due to the shooting pain in my hips that forbids me to go back to sleep. The heartburn/reflux alone is enough to knock you on your butt. But as long as I live, I will never forget seeing a facebook post as a friend of mine went into labor: "It's pain for a purpose! You can do it!" At the time, I was writhing in purposeless nerve pain from MS and my herniated disc and I was so disgusted and disheartened I almost threw the laptop across the room. Last night's pregnancy pains had me in tears, but I am comforted by the fact that (finally) this pain is most definitely for a purpose!

5. Fatigue is part of our daily life. Hey - most of us already own shower seats for when we are too tired to stand up and take a shower. Yes, pregnancy makes you tired. And MSers definitely are used to extreme fatigue. We have learned to manage "our spoons" as best we can.

4. We are used to not being in control of our bodies. For many pregnant women, this is the first time they have had little to no control over the physical (and emotional) things happening to your body. Other forces have taken over! I had to admit years ago, that I was no longer in control of my body and that many times the MonSter held the reins and I was along for the ride. So far, even when I'm in pain or feeling crazy hormonal, I much prefer this baby's way of running things over the MonSter's!!

3. We had to learn to say No years ago. It's such a tiny word and yet so difficult to say, especially to the things we really want to do. But managing a disease like MS means saying NO...a lot. It sucks, but it is necessary to our health. Pregnancy is not a lot different. It's important to acknowledge what your body needs, even when it may not be what you really want to do.

2. We also became experts at asking for help when we need it. This is maybe one of the most important. I can safely say that for the majority of my peers, being pregnant and having a kid was the biggest "medical" thing they had ever experienced. For many it was their first hospital stay, or first surgery and therefore, their first recovery. Chris and I both have learned the importance of asking for help and we are blessed with an amazing village that has risen to the occasion so many times for us. Pregnancy/childbirth/having a newborn will be no different. We know we will need help, from our friends, our family, and from professionals. I am no less of a person or a mother because I can't do it all myself. We all need help sometimes! Certainly during a major life change like this one.

1. We are thrilled to be a patient with a positive medical issue! No one congratulates you when you show up to their office with MS or cancer. I am so used to the sympathetic looks of healthcare professionals as they hand me a new diagnosis, or tell me what surgery I have to have, that this whole experience has been such a unexpected joy. How often in life do you get to be at the doctor's office for something positive?!

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