26 weeks, 4 days--Q&A

You seem to have had a successful experience falling in love; do you have any dating advice for people with Cerebral Palsy?

Wow, what an intimidating question! As you may be able to tell I’ve been putting off creating a generalized answer that I could post here on the blog. However, this just might be my most popular question, so here is my attempt. Please remember that I am not an expert.

My first bit of advice is to get out of the house and go to where single people are. I know we all have different ability levels and this will be more difficult for some than for others, but when it comes to meeting new people--usually this means getting out of the house. Most of my dating and socializing as a single person came from two sources; church and college. These are two great places to meet eligible and datable people, both with and without disabilities. On top of dating I believe that church and college will foster one’s self identity and progression through life. So even if you don’t meet someone I think you will be a happier person for participating. If church or school are not your “thing” I would recommend joining a organization of “do gooders” and perform service for others—it’s a great place to meet the right sort of person to date and serving next to people helps build relationships and helps people see past your disabilities.

Another big issue with dating is transportation, I have heard people of all ability levels complain that they cannot date because they have no car or cannot drive. To this I can tell you that Matt and I had a 100% “Car-less Courtship” and about 8 months of our 2 year marriage have been car-less as well. I know that public transit isn’t ideal but it is something, don’t discount it.

 Here are another few pointers: 

• When socializing try not to complain about your disabilities; negativity and complaining aren't very attractive. If you need to mention something say that you would have difficulty with this or that activity, and try to say it with a smile on your face. 
• I think that is excellent to expect high standards from the people you date but also set high standards for yourself too. Be a person you would want to date. 
• And finally remember that it’s okay to be single, you can be very happy as a single person. Don’t settle for dating someone that demeans your ability level just because you don’t want to be alone. Besides being a happy single person is very attractive.

Do you have a birth plan?

Yes and no. There is a lot in how CP will affect my delivery that I don’t know, so I need to be flexible. Here are some of my thoughts. 

“Ideally” I’d like to deliver this baby naturally, aka no pain meds. I know this might be nothing but vanity on my part but after 6 osteotomies (where your bone is sawn in half and rotated) I figure that I can handle pain just fine. Pain tolerance is simply part of my identity so I don’t want to feel weak. Also of course, I have the same arguments against epidurals many other women have. I don’t want to give myself unnecessary medication and put the child in danger or distress. My doctor has suggested, though, that an epidural may reduce my spasticity. I’ve heard of woman with CP in labor for hours (30 hrs plus) and not being able to deliver due to spasticity, resulting in emergencies. If an epidural really would loosen my muscles and make delivery less dangerous I cannot let my pride get in the way. For now though I’m not convinced it really would loosen my muscles—if any of you have had an experience related to this, please let me know.

I would prefer to not have a C-section but I am not opposed either, under the right circumstances. If we decide that my pelvis is too tight to deliver, I am in favor of a planned C-section and avoiding any distress to the baby. Since I want to deliver vaginally so much the doctor has suggested that we could try and deliver vaginally but have a shorter time limit before moving to the operating room. I am most comfortable with this suggestion.

I am VERY opposed to an induction with my CP. Pitocin will increase distress on my baby and my tight pelvis will too. I will NOT put my child in that situation. If there is any suggestion of it I will schedule a C-section and skip all the inevitable trauma to my child.

So those are my thoughts so far—but admittedly I still have a lot to learn.

24 weeks 4 days

Well I am 6 months pregnant and still going strong! The baby as far as we can tell is healthy and strong, I’m healthy and the pregnancy seems to be progressing without a hitch. I'm feeling the baby move now which is very exciting :)

My OB has been a little concerned about my delivery.  I went yesterday to “delivery counseling” at a specialized hospital in regard to my heart. I had told her prior to this that my cardiologist had already cleared me for delivery and I had released those records to her—but a second opinion is always good. So, it wasn’t a surprise when this doctor told me that my PFO should not interfere with delivering vaginally. Of course CP could make delivery very difficult and I may end up with a C-section any way, but let’s take things one at a time.

Specific to CP

I am still active and mobile although I am exhausted ALL the time. I still am walking 2.5 miles every morning, although, by October I plan on cutting back. Someday's I do very well and others are complete torture—I don’t want to hurt myself, I am going to try and make prudent choices regarding my exercise. I’m really surprised I’ve made it this far and I believe that my walks are the number one reason I am still able to walk at this later stage in pregnancy.

My ankles are doing better and have stopped hurting and giving out. I did choose to stop physical therapy due to both the cost and quality of care that I was receiving. I am grateful for the tools and exercises received on my first visit, though, and credit that in part  for my current success.

A moderately boring post I know… but the good news is that, that is good news! I’m an exhausted woman with CP carrying a pregnancy better than expected. I hope that my boring posts can give HOPE to other woman with CP curious about pregnancy.

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Next time I’ll have a Q&A post where I will answer a question about dating (the last Q&A brought about several questions on this subject) and I will be discussing my “birthing plan.”  Remember you can contact me at IhaveCP@gmail.com.

20 weeks

Wahoo! I’ve hit the halfway point! Just to let you know, the pregnancy is going well, the baby’s development is right on track and if it weren’t for CP I don’t think I’d have any complaints.

Specific to CP

Starting 2 or 3 weeks ago I started having some problems with my ankles giving out and increased lower leg pain. I discussed this with my doctor at my last appointment and she suggested starting physical therapy, an idea I was very in favor of. She wrote me a prescription for an associated office and my first appointment was yesterday.

I really miss the days of receiving physical therapy services at the hospital where I had my surgeries and receiving specialized cerebral palsy care. Now I have to sit and explain my surgeries and spasticity to people with eyes popping out of their heads. “Yes I am sure that I am an interesting case to you.” I cannot complain to much though, I really feel that I received the care and recommendations that I desired.

The biggest obstacle I face now is the cost of the therapy. Ever since leaving the office I’ve been trying to wrap my head around it and find solutions. I’m forced to analyze my need verses my pocketbook—I’m wishing now that I hadn’t made a complaint until week 30 or perhaps I should make physical therapy priority during my postpartum rehabilitation and simply opt-out of it for the duration of my pregnancy. All of these thoughts also spark thoughts of my middle and late adulthood and how find to affordable care for that time of my life.

No, I am not “pining” over this issue I’m sure that my husband and I can find the right solution, I’ve always been able to take care of my body. I am thinking that I will take and use the information from the PT, then opt for a gym membership where I could have access occasionally to personal trainers for the duration of my pregnancy. (The gym has always served me well.) Then start physical therapy again after my child is born and physically I am at a very low point.

I can imagine medical professionals shaking their heads at me and other persons with cerebral palsy nodding (I know others have made similar choices.) Please understand that I am not complaining, making a statement on the country’s health care, or asking anything from anyone. I am writing my reflections here, because if you or someone you love is a woman with spastic diplegic cerebral palsy considering pregnancy this is something you will likely need to think about too. I will keep you updated on my choices on this subject.

18 weeks

Its a boy!

17 weeks Q&A, or is it 18?

First I want to apologize for having this be 2 days late. Monday I was totally separated from my normal schedule and Tuesday I had to catch up on everything.

How did you meet and fall in love with your husband? Does he also have CP?

My husband and I met in college, during my last year. We lived in the same apartment building and attended church together. The first thing that intrigued me about Matthew was how carefully he used his words. No matter what the situation I only heard him speak when he had something very kind or intelligent to say. What manner of college boy was this?! We fell in love over long talks in the evenings. I was very busy writing my thesis and working so he would also regularly fix me dinner to ensure that we had time together. Everybody has to eat! I remember one particularly busy day, I did not return home until 1:30 am and there he was sitting in the hall reading a book just so he could say good night to me.

One night in February after about a month of talking every night, he asked me to be his girlfriend. The question really threw me off guard! After a few moments of incoherent thought and struggling to find the right words; I told him yes, shook his hand goodnight and ran away to bed. Our first kiss was the next day and out first date was 2 days after that—so we did things a little backwards.

It was only two months later, while standing in the pouring rain and trying to obtain shelter under the plastic canopy of a playground jungle gym, that he pulled out a diamond ring and asked me to be his bride. At that moment I essentially panicked, the word “Marriage” had not even entered our conversations—and there he was with a diamond ring? I held on for dear life to the playground equipment as my legs gave out and I tried to process the information. Luckily, I had decided the week before if our relationship ever moved in that direction I would not resist. I said Yes! And 4 months later we were married.

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Matt does not have CP, in fact he is completely able-bodied and a distance runner. He was the first boy to COMPLETELY look past my disabilities. He told me that it wasn't even a factor in considering our relationship, although he did make a point to educate himself on Cerebral Palsy.

On our first date

Matt running (wish I could do that)

What size of family would you like to have?

As large as possible! If I had written this last week I would have told you that we planned on having 2 children biologically (close together) and after they grew a bit and became more independent we would adopt a few.  Now though I’ve had a few “reality checks” and I’m not sure what we will do. It looks like my leg bones might be bending under the weight of the pregnancy; this could be cause for concern (see page “Our Choice”) and we might choose to adopt after this pregnancy.

I come from a family of 7 and my husband comes from a family of 8, so siblings are very important to us. In our previous plan siblinghood would be established and we would have time to save the necessary money to adopt. Now though we may not have that money saving grace period.  We will see how things go, I have not lost faith in having a 2^nd or even 3^rd pregnancy. We simply have to be willing to take things as they come.

  

15 weeks 4 days

I had a nice appointment today. We, the baby and I, are just where we need to be.  I did have some questions related to my CP for the doctor but she wasn’t able to be in her office today so I met with her nurse. If my questions can’t wait until next time, I can call her as soon as Monday.

Specific to CP

Now that I am in my second trimester I’m noticing some interesting changes, I have more energy but I am less stable. My weight gain is hard on my ankles and my big belly is shifting my center of gravity. I am avoiding both stairs and pets (they—the pets, have a way of unexpectedly getting under your feet) and I am extra careful on my daily walks. I’m hoping be able to maintain them through September, but we will have to see.

Good news

In 3 weeks I will be having my “Find out what the baby is” ultrasound! Wahoo!!

Oh, and in a week and a half (July 25^th) I’ll be doing another Q&A. If you have a question contact me at ihavecp@gmail.com, on Facebook or leave me a comment.

14 weeks- Q&A

Since becoming public with this blog I have received a number of emails with questions and comments.  I have been able to write everyone back personally—but I thought it would be good to address common questions here.

Q: What are your pregnancy symptoms like? (unrelated to your CP)

A:  I decided from the beginning of this project to avoid making comments on my everyday symptoms because I did not want to detract from the main purpose of this blog; to explore the affects of pregnancy and CP on each other.

My mornings are my best time of day, from 6am-10am I try to accomplish as much as possible, including my morning walks. Starting 10:30 or 11:00 I start to feel queasy and exhausted and this escalates throughout the day. While making dinner I am probably the most unhappy. I am very unsteady, sick and easily confused.  I have developed a very strong aversion to meat, cooking and preparing it can be miserable. I am probably worst off after dinner—eating it makes me sick.  I’ve stopped doing the dishes at night because all my energy is spent, I have less coordination, and I get very dizzy. I usually go to bed by 9:30 pm.

I have not vomited, although sometimes wish I would.

Once every week or so I have a good day where I have energy and I don’t feel sick at all.

Q:  How do you manage to walk so far with CP

A:  I owe this to several things.  I was very dedicated in preparing/strengthening my legs for pregnancy.  I started 9 months before becoming pregnant.  The increase of the hormone relaxin in my body (this is a natural side effect of pregnancy) reduces the spasticity of my muscles.  This decreases my typical chronic pain.  Finally, there is my mother-in-law, she walks with me and interesting conversation really helps.  

I will point out though that prior to pregnancy I don’t think I would have been able to walk 1 mile without being in agony afterwards. The relaxin is a tremendous help and I will miss its effects. We’ve decided that 4 miles causes to much pain and to long of a recovery time so we have capped out walks at 2.5 miles.   

Keep the questions coming!  I will do Q&A sessions as long as there is interest.