S02, Ep. 3: Pregnancy Brain
In this episode, Mandi shares the challenges she faced during pregnancy as a disabled woman, drawing attention to the need for more published medical information.
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Transcript
Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.
Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.
[Upbeat Background Music]
Mandi: I'm pumped about recording this episode and must admit, I'm feeling a bit professional. I'll let you in on a little behind-the-scenes secret. I've recorded every episode up until 2 weeks ago on a tablet or phone. So, thank you for listening with less than consistent audio. Today, however, you should hear me pretty well because your support of my podcast has allowed me to purchase a real microphone! I hope to continue improving my little home studio, my living room, and producing meaningful content for you. Please listen through to the end to learn how you can support this podcast.
Now I'm ready to start an important conversation that may seem a bit niche. Today's episode will specifically speak to people with Arthrogryposis Multiplex Congenita Amyoplasia type. However, much of what I'll share is likely applicable to people with other disabilities, and likely to many women who don't identify as disabled.
Now I'm ready to start an important conversation that may seem a bit niche. Today's episode will specifically speak to people with Arthrogryposis Multiplex Congenita Amyoplasia type. However, much of what I'll share is likely applicable to people with other disabilities, and likely to many women who don't identify as disabled.
[Mandi voices Ad (ads change and will vary)]
[Doorbell Sound Effect]
Mandi: For the most part, my pregnancies were planned. I'm kind of a planner in general. My friends with disabilities will understand that having a disability pretty much forces you to plan. In regards to having babies, this was a very good quality.
My first step after deciding we were ready for kids was to talk to my Primary Care Physician. I've been at the same primary care clinic since I was about 8 years old and my current doctor has seen me most of my adult life. After several occasions where I came to him already knowing my own diagnosis, whether it was strep, a UTI, or something else, he knows I know my body pretty well. So when I told him I was ready for babies, he was excited and I started pre-natal pills. This is an important step that many people don't follow, but I knew it was especially important for me because I'd have a bunch of other challenges to face.
I was very blessed in that I didn't have to try long before I got pregnant. I honestly knew something was different very early and took an at home pregnancy test as soon as I missed my period. Ok, yes if you've been listening, then you know I took 7 tests. They were obviously all positive and the journey really started. My next step was to actually go back to my PCP to get blood tests done to confirm my pregnancy, which it did.
I think it's important for me to share here that there was a lot that was going on internally at this time. I was ecstatic and terrified at the same time. I believe many women experience this, but my feelings of terror were heightened because I couldn't base my experience off of anyone else's really. I'll insert here that I bought the good old "What to Expect When You're Expecting" book, but didn't find it as helpful for me. They definitely need to add in a disabled parent section. I started researching like crazy to see if there was anyone with my disability who had a baby. In retrospect, I probably should've done this during my early decision-making phase, but in a way, I'm glad I didn't because I may have been scared out of pregnancy. My fear wouldn't have been because of any horror stories, but because of the lack of information available. In fact, I only found 1 medical article about a woman with Arthrogryposis that had a baby, but she also had other conditions that complicated things. I also had to seriously educate myself on medical terminology just to get through one sentence.
Since What To Expect wasn't cutting it and medical studies were limited, I started looking for books. Surely, someone must have shared their story, right? Wrong! Books were limited too. However, I did find something, the closest I could get to what I was looking for. The book is called, "The Disabled Woman's Guide to Pregnancy and Birth" and it is written by Judith Rogers. In the book, she gathered information from 90 women with different disabilities. While Arthrogryposis was represented, it manifested quite differently than mine. However, some of the woman's experiences did help me consider things to be prepared for. Let's take a look into my biggest concerns and challenges:
The first concern is one that I'm always at risk for, but becomes a bigger worry with pregnancy, blood clotting. As someone who doesn't walk and already has poor circulation to my legs, I'm always at greater risk for blood clots, particularly in my legs. In fact, this is what made condoms my birth control of choice. The combination pill put me at greater risk for clotting because of the estrogen hormone. I even tried the mini pill, which only has progesterone, but I didn't like the effect it had on me, mainly that I gained 7 pounds in a month. Anyways, back to pregnancy. I knew I was at greater risk and since my doctor agreed, she put me on a blood thinner. This was an injection I had to do everyday and it stung! I hated it and honestly cried every night I had to do it. My husband cried with me some nights since he was the one injecting me. It was pretty awful, but a necessary precaution.
The second major concern actually came later in pregnancy, once I was into my second trimester and my baby was growing. As with most women, disabled or not, my baby started pressing up into my chest. However, since I can't stand and I'm of a smaller stature, this happened much earlier for me and there was little relief. As my baby grew, the more challenging breathing would become. I could not lay down much and slept in an almost sitting position. Eventually, trying to sit up completely also became difficult because of my breathing. I had to be in this sort of limbo reclined position for weeks.
Of course, babies don't just grow one direction. As my baby pushed up into my chest, he also started pressing down into my pelvis. As someone with limited joint movement and weaker muscles, and limited movement because of both, the pressure on my pelvic bone was very painful. At my 33 week check-up, I told my OB about my pain and she could see it on my face. I went into the hospital and wound up staying there until delivery, 3 weeks later.
The third biggest issue I faced before delivery is known as Vasovagal Syncope. Basically fainting. I've never fainted before or since pregnancy, and I only fainted with my first pregnancy, though I came close on several occasions with my second. It's difficult to pinpoint exactly what would trigger these episodes, but my blood pressure would suddenly drop very low, I'd go pale in the face and become extremely nauseous. During one of these spells in the hospital, on the toilet, I did in fact faint. It was very scary and there was little I could do to prevent it since the spells would come and go suddenly.
I have no idea if other women with my disability have, or will, have similar experiences. I'm honestly sharing because I wish someone had shared with me. I wish there were more information about disabled parents. It's sad that in 2019, information from a medical perspective is still so limited. I hope you benefit from my story. As challenging as pregnancy was for me, I'm glad I did it both times. The result is truly Beautiful!
My first step after deciding we were ready for kids was to talk to my Primary Care Physician. I've been at the same primary care clinic since I was about 8 years old and my current doctor has seen me most of my adult life. After several occasions where I came to him already knowing my own diagnosis, whether it was strep, a UTI, or something else, he knows I know my body pretty well. So when I told him I was ready for babies, he was excited and I started pre-natal pills. This is an important step that many people don't follow, but I knew it was especially important for me because I'd have a bunch of other challenges to face.
I was very blessed in that I didn't have to try long before I got pregnant. I honestly knew something was different very early and took an at home pregnancy test as soon as I missed my period. Ok, yes if you've been listening, then you know I took 7 tests. They were obviously all positive and the journey really started. My next step was to actually go back to my PCP to get blood tests done to confirm my pregnancy, which it did.
I think it's important for me to share here that there was a lot that was going on internally at this time. I was ecstatic and terrified at the same time. I believe many women experience this, but my feelings of terror were heightened because I couldn't base my experience off of anyone else's really. I'll insert here that I bought the good old "What to Expect When You're Expecting" book, but didn't find it as helpful for me. They definitely need to add in a disabled parent section. I started researching like crazy to see if there was anyone with my disability who had a baby. In retrospect, I probably should've done this during my early decision-making phase, but in a way, I'm glad I didn't because I may have been scared out of pregnancy. My fear wouldn't have been because of any horror stories, but because of the lack of information available. In fact, I only found 1 medical article about a woman with Arthrogryposis that had a baby, but she also had other conditions that complicated things. I also had to seriously educate myself on medical terminology just to get through one sentence.
Since What To Expect wasn't cutting it and medical studies were limited, I started looking for books. Surely, someone must have shared their story, right? Wrong! Books were limited too. However, I did find something, the closest I could get to what I was looking for. The book is called, "The Disabled Woman's Guide to Pregnancy and Birth" and it is written by Judith Rogers. In the book, she gathered information from 90 women with different disabilities. While Arthrogryposis was represented, it manifested quite differently than mine. However, some of the woman's experiences did help me consider things to be prepared for. Let's take a look into my biggest concerns and challenges:
The first concern is one that I'm always at risk for, but becomes a bigger worry with pregnancy, blood clotting. As someone who doesn't walk and already has poor circulation to my legs, I'm always at greater risk for blood clots, particularly in my legs. In fact, this is what made condoms my birth control of choice. The combination pill put me at greater risk for clotting because of the estrogen hormone. I even tried the mini pill, which only has progesterone, but I didn't like the effect it had on me, mainly that I gained 7 pounds in a month. Anyways, back to pregnancy. I knew I was at greater risk and since my doctor agreed, she put me on a blood thinner. This was an injection I had to do everyday and it stung! I hated it and honestly cried every night I had to do it. My husband cried with me some nights since he was the one injecting me. It was pretty awful, but a necessary precaution.
The second major concern actually came later in pregnancy, once I was into my second trimester and my baby was growing. As with most women, disabled or not, my baby started pressing up into my chest. However, since I can't stand and I'm of a smaller stature, this happened much earlier for me and there was little relief. As my baby grew, the more challenging breathing would become. I could not lay down much and slept in an almost sitting position. Eventually, trying to sit up completely also became difficult because of my breathing. I had to be in this sort of limbo reclined position for weeks.
Of course, babies don't just grow one direction. As my baby pushed up into my chest, he also started pressing down into my pelvis. As someone with limited joint movement and weaker muscles, and limited movement because of both, the pressure on my pelvic bone was very painful. At my 33 week check-up, I told my OB about my pain and she could see it on my face. I went into the hospital and wound up staying there until delivery, 3 weeks later.
The third biggest issue I faced before delivery is known as Vasovagal Syncope. Basically fainting. I've never fainted before or since pregnancy, and I only fainted with my first pregnancy, though I came close on several occasions with my second. It's difficult to pinpoint exactly what would trigger these episodes, but my blood pressure would suddenly drop very low, I'd go pale in the face and become extremely nauseous. During one of these spells in the hospital, on the toilet, I did in fact faint. It was very scary and there was little I could do to prevent it since the spells would come and go suddenly.
I have no idea if other women with my disability have, or will, have similar experiences. I'm honestly sharing because I wish someone had shared with me. I wish there were more information about disabled parents. It's sad that in 2019, information from a medical perspective is still so limited. I hope you benefit from my story. As challenging as pregnancy was for me, I'm glad I did it both times. The result is truly Beautiful!
[Bling]
Mandi: So you've noticed I'm behind on episodes, huh? Writing and recording content regularly is hard work! Now I know why people take podcasts on as a full-time gig. Honestly, I'm not there yet. However, you can help support this podcast so I have more flexibility to drop other things and focus on creating awesome content for you!
These are 4 important things you can do today to support Find Your Beautiful:
1. Please give this podcast a 5 star rating on Apple Podcasts and/or on the MandiBox Beauty Facebook page. It's even more meaningful if you include a sentence or 2 about why you listen.
2. Go to the Find Your Beautiful website at th3mandibox.wixsite.com/fybpodcast. Click Episodes and choose any episode you want to listen to. Then scroll down and click on the link to support this podcast. My friend Laurie's $5 per month contribution is what helped me get this microphone. Your support will make this podcast better and better.
3. The more the merrier! Share this podcast with 3 friends this week.
4. Download the Anchor Mobile App and leave me a voice message so I know you're listening. You can give feedback and ask questions. You may even get featured in a future episode.
This podcast is also available on iTunes, Google Podcasts, Spotify, and any other place you like to listen! Visit my website linked in the description to get access to all the platforms.
[Mandi voiceover to 'Compton' music]: In the next episode, "Special Delivery," I'll talk about issues I faced during labor and delivery ‘Til next time Beauties!
These are 4 important things you can do today to support Find Your Beautiful:
1. Please give this podcast a 5 star rating on Apple Podcasts and/or on the MandiBox Beauty Facebook page. It's even more meaningful if you include a sentence or 2 about why you listen.
2. Go to the Find Your Beautiful website at th3mandibox.wixsite.com/fybpodcast. Click Episodes and choose any episode you want to listen to. Then scroll down and click on the link to support this podcast. My friend Laurie's $5 per month contribution is what helped me get this microphone. Your support will make this podcast better and better.
3. The more the merrier! Share this podcast with 3 friends this week.
4. Download the Anchor Mobile App and leave me a voice message so I know you're listening. You can give feedback and ask questions. You may even get featured in a future episode.
This podcast is also available on iTunes, Google Podcasts, Spotify, and any other place you like to listen! Visit my website linked in the description to get access to all the platforms.
[Mandi voiceover to 'Compton' music]: In the next episode, "Special Delivery," I'll talk about issues I faced during labor and delivery ‘Til next time Beauties!
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