First, this is a long post – whoops! Second, if you want to see a really cute and clever video made by my social media agency, take at look at the bottom of this post.
I had mentioned in my last post that I have a neurological disorder called Spastic Diplegia, which is a form of Cerebral Palsy. Already it sounds like a really serious condition, and if you haven’t met me before I’m sure you’re imagining that I live in a wheel chair and sport a claw-hand. While there are many people with CP who have extreme lack of mobility, I am not one of those people. As far as Cerebral Palsy is concerned, and even Spastic Diplegia, my case is very mild affecting only my ankles and calves. In fact, I often have to over-explain the complications I experience with my condition, because to any untrained on-looker, I walk and look perfectly normal.
I’ve never really talked about this condition on my blog, because I have found great treatments for living with my condition, and as a result, am able to live/work/play just like everyone else. I’ve had Spastic Diplegia since I was a year old. Things were really hard when I was young, but I’ve never thought of myself as handicapped and have never sought support groups or discussion boards for people who are similar to me. In other words, I just didn’t let CP take up that much of my brain space.
Then I got pregnant.
Before my husband and I conceived, we asked my leg doctor if my Botox treatments would be available were I to become pregnant. She told us that Botox is not approved for pregnant patients, but she was excited for us and would work with us to seek alternate pain management treatments.
I love my leg doctor. I pay a lot more for Kaiser Permanente, because I love her so much.
We decided that we would time conception attempts as close to receiving my Botox shots as possible. The Botox lasts for 4 months in my legs, and we wanted to make sure I was out of pain for as long as we could. It didn’t take long after my last treatment of Botox to conceive, and we waited anxiously for that 8 week introductory appointment with my OBGYN. The OB brought up my CP immediately, and I mentioned to him that we knew Botox was not allowed, and would need to put together a pain management plan. For the life of him, the OB could not understand why a local injection of Botox would be off-limits during pregnancy, and wanted to research a little more.
This is where things get complicated.
Matt and I were suddenly filled with hope! We had an advocate in our corner who seemed to be as logical as we were. Oh wait, not so fast. Long story short, the high risk pregnancy doctor had to get involved who called me and told me that I can’t get Botox while pregnant, because it just hasn’t been tested. Well, it has… on 19 people. The results of those 19 people were positive (1 elective abortion, 1 miscarriage in the first trimester and 17 healthy babies with no side-affects whatsoever), but there simply was not enough data for Kaiser to take the risk. By this time the Botox had pretty much worn off, and I was experiencing extreme amounts of pain and spasms. In desperation I exclaimed “What am I supposed to do?!” That OB who had never met me before had the nerve to say “Well, that’s just the consequences of getting pregnant for someone with your condition.”
I’m sorry. Did I do something wrong? Am I inconveniencing you with my condition? Perhaps because I have CP I should just be sterilized, right? How are you licensed to deliver babies, and furthermore, how on earth are you supposed to be the designated High Risk Pregnancy doctor?
Grrr… Okay, rant over.
For the first time in my life I went to Google and looked up “Spastic Diplegia Pregnancy Botox.” You know what I found? Nothing. I got rid of the Botox part and found one article written by a woman who sounded like her condition was slightly more severe than mine, and was definitely a lot smarter than me. She wrote about how with her 2nd baby she hired a personal trainer to get all her muscles ready BEFORE she conceived, then kept it up after she got pregnant. Smart. She was also able to get muscle relaxers from her doctor called Flexeril, which she said was safe during pregnancy. Due to the CP, falling is an inevitability, so she also worked with a physical therapist to learn the right way to fall to not hurt the baby. Eventually, she was able to give birth vaginally to a healthy baby with the help of an epidural. Big win, because she was expecting to have to do a C-section.
I dashed to my see my leg doctor and ask her about Flexeril! Womp, womp. She told me that no muscle relaxer is safe during pregnancy. Then she asked me if I plan to breastfeed (which I do). Guess what, it’s not safe to receive Botox while breastfeeding either! I was just receiving more and more bad news, and it wouldn’t stop coming. She did, however, offer me a prescription for Physical Therapy and Acupuncture. That was definitely a step in the right direction.
I spent a little more time online trying to find other women with my condition who had to give up Botox treatments while pregnant. I still found nothing, except for a few people who were warned to never get pregnant or have kids because of their condition. So disheartening.
You know what I did find though? There are a lot of online support groups for parents of kids with Spastic Diplegia. Of course, it’s of no help to me to read long discourses of freaked out parents whose kids have to wear braces (been there), whether their kids should have ankle cord surgery (discussed that, didn’t go there) and what other treatments will be available to their little bundles of joy (I’m telling you, Botox is definitely the way to go). That’s when it occurred to me: adults with my condition don’t seek out support groups – this is their lives, and they don’t go talking about it on the internet.
So guess what? I’m going to talk about it – the good and the bad. I’m going to let you know what treatments I’m getting and what treatments are working. I’m going to let you know how annoying it is when people who have no idea what CP is like tell you what should and shouldn’t be doing during your pregnancy. I’m also going to tell you that your plate is full, so DO NOT WORRY about eating a scoop of strawberry ice cream if you’re really craving it. I think the baby will think it’s delicious too!
All right, here goes… This is what I’ve tried so far.
Physical Therapy: BIG LET DOWN. The lady taught me how to do stretches I was already doing, and didn’t have much else to offer. I thought I was going to be stretched. I thought I was going to be worked out. But nope. I was told to take it easy, and not exercise too much. In other words, a huge waste of time.
Acupuncture: A+! I’ve been receiving acupuncture for 2 weeks now and I definitely feel a difference in my calves. Unfortunately, the acupuncture has not helped much with my Sciatica (Did I mention I have that too? Awesome, right?). If you choose to get acupuncture, do not go in thinking it’s not going to hurt. IT DOES HURT. It hurts a lot. I cry every time I go, which is twice a week. For me, the tears are definitely worth it.
Chiropractic: My acupuncturist is also a chiropractor. When the needles weren’t working for my Sciatica, he knew I needed an adjustment. Instant relief! Just received one treatment so far, but signed up for more.
Exercise: My husband has been helping me stretch out my calves and we have been going on daily walks. It’s hard, but it’s totally necessary.
Drugs: Sigh… Tylenol only. 🙁
I’m feeling like I can keep this up for a while after the baby is born, so I can breastfeed. However, everything requires time. Appointments, work out time. Just TIME. I’m not making any bones about knowing how exhausting motherhood will be, so for now the breastfeeding question is just filed under “We’ll see.”
Okay, this is what has been annoying me.
Midwifery articles: I’ve stepped into the Facebook algorithm that thinks I would naturally want to read articles about childbirth all day. I know people who have had their babies with midwives, and apparently it’s a wonderful experience. Here’s the thing: the people who write these articles are so stinking arrogant. “Trust your body!” “Your body knows what to do!” “You are not a lemon (whatever that means)!” “The doctor deception!” “Women who have epidurals lose control over their bodies!” “Epidurals will kill your babies and ruin your life!” Okay, maybe that last one is a bit of a stretch, but that’s what it feels like. Well, guess what! I Have CP. That means my body does not know what to do. Literally, it can’t control itself. So in order for me not to violently kick and knock out the person on the receiving end of delivering my baby, Mama needs an epidural. Besides, haven’t I suffered through enough pain during my pregnancy? GIVE.ME.THE.JUICE!
Nursing in Public articles: All I see in my Facebook feed is boobs. On a personal note, as much as I think it is rude for people to insist that a nursing mother do so in the bathroom, I think it’s just as rude to assume that everyone in public should be cool when you whip your boob out for everyone to see. There are cover-ups for that. That’s my position. End of story. (Update: Already people have taken offense to this, and began with a lot of language of “You have no idea what it means to be a mother.” First of all, don’t be rude – I am a mother, and have sacrificed and suffered humiliation quite a bit for my baby thus far. Second, my main beef is with articles and seeing boobs on social media. If you have an emergency, you’re not going to get a snide glance from me, but posting photos is an entirely different thing. Third, this awesome Orthodox lady who is an advocate for nursing moms agrees with me, so there. Believe it or not, even though my child is still in utero I’m still entitled to my opinions.)
Judgment for craving ice cream: Just stop it. I am hungry all the time. I was losing weight during my pregnancy for way too long. I will eat whatever I damn well please.
What’s been blessing me?
My Husband: Matt is seriously the best. Most husbands have to deal with hormonal stuff, pregnancy aches and pains and that huge pillow in the bed. Mine has to deal with all that and my CP. He is willing to do anything and everything so that I’m the most comfortable, and never shows me any frustration or anger. That’s true love.
Texts from friends: I have wonderful friends who regularly check in with a simple “How are you feeling?” With work and all, I don’t always have time to reply right away, but it really means so much.
Baby Shower planning: I don’t know the plans, and the baby shower is 3 months away, but my friends have been buzzing about it! I know I shouldn’t be, but I’m just so amazed at how excited they are for me and how they want to celebrate Matt’s and my new baby! It makes me feel so special.
Parents: Both mine and my husband’s parents have been very supportive and very excited for us. It’s neat.
Working Moms: I’m going to be a working mom, and I’m grateful for friends who are working moms, and give the real practical advice that I need. There’s no shame in working to support your family. Yes, I will miss some milestones, but Matt has a phone with a video recorder, so I think we’ll survive.
Facebook Moms: Whenever I have a question about pregnancy, they are there! I love getting lots of different opinions and experiences. It reminds me that we’re all doing this differently, and that’s ok.
My co-workers: Because they do things like this.
That’s it for now. I will come back with more updates sporadically. 🙂