Maxine’s Dysautonomia Journey: Part 1

This is the first installment of a three part dysautonomia story.

“Every woman has a moment in life that changes everything. What’s that moment for you?”

I read this question recently and it got me thinking. Did I have one day or event that changed my life?

When a woman looks back on her life, there may be a hundred different days that changed her world. Maybe it was the day she got her college acceptance letter or the day she got engaged. Possibly it’s the day she received her dream job offer or the day her child was born. While yes, all these days changed everything in my world, I had one day that truly altered my entire existence. To be honest, it wasn’t just one day, but a series of days over a series of years that led to that one moment when my entire world shifted. My life would never be the same again.

My moment started when I found out I was pregnant.

It was an average pregnancy– maybe a little rougher than typical, but nothing out of the ordinary. I had gestational diabetes and morning sickness. I hated being pregnant; not because I didn’t want my baby, but because I didn’t feel like myself. So, when it came time to deliver, I wasn’t surprised that it wasn’t a picture-perfect labor. Due to concerns about the size of my son, labor was induced early on a Wednesday morning and twelve hours later, to the minute, my son entered the world. During those hours, I had an epidural that went wrong and didn’t work, followed by a second that did work.

I lost over three hours to pain, coming back to the world with M*A*S*H playing on the television. And then at five that evening, my beautiful son joined us. He was a perfect baby, and I couldn’t have asked for more. But within a few minutes after his arrival, I began to hemorrhage. I was given two shots to help control the bleeding, then was cleaned up and moved down to a recovery room.

Side effects

Sometime after arriving downstairs, the shots’ nasty side effects paid a visit. I was stricken with diarrhea, dizziness, and nausea. I still had a catheter, IV, and was still being given drugs to contract my uterus. I was sick and frightened. I had seen my friends after delivery and knew something was wrong. My friends had been able to shower, eat, and hold their babies following birth. I couldn’t even sit up in bed. I remember crying myself to sleep that night. The next morning, the nurse brought my baby back to me from the nursery and was shocked that I was frightened to have him with me. She left him in the room, ignoring my pleas to take him back to the nursery. I knew I couldn’t care for him. At that point, I still couldn’t care for myself let alone someone else. I was relieved when my husband showed up and was able to help.

I don’t remember what day I came home from the hospital. I can’t tell you how many days passed, or how long I was tied to the bed with the IV and cath. I can tell you that I was never checked for the heavy bleeding. At the discharging, the nurse handed me a page about a culture test she thought I had failed and sent us home.

The next several weeks are a blur. I slept a lot. We bottle fed my son. My mother came to help me take care of my him. I bled more than I thought I should, but when I called to ask the doctor about it, he said, “You haven’t had a period in 10 months. It’s going to be heavy. I’ll see you at your appointment.”  I was clotting, which I had never done, and I remember asking my mother if that was normal. She didn’t know. She had been sick after having me but nearly 30 years had passed, so she didn’t remember. I loved my son, and I loved being a mom, but I still didn’t feel right.

At my son’s two-week check-up, I had an experience that I remember clearly (which is very surprising, since everything else during those weeks is unclear). As I drove to the doctor’s, I was so proud. It was the first outing I was doing alone. I found a parking spot and got out of the car. As I walked to the trunk, another car pulled into the spot opposite of me. I got the stroller out and got the car seat tucked into it. I took a deep breath and turned to start pushing up to the building when I looked up to the car across from me. The woman laughed and called out “you’d better get faster or you’re never going to make it.” In the time it took for me to do these little steps, she had gotten her newborn and toddler out of the car and into their strollers.

She was already pushing towards the building as I was just locking my car. I felt my bubble of pride burst and I was fighting off tears as we pushed into the building.  When I spoke to my mother later that night on the phone, she responded that every mother was different and I would find my pace. My son got a clean bill of health from his doctor and I was so relieved. He was a happy, healthy baby. 

I don’t remember what the date was that I was due to see my OB/Gyn. I know it was during the week of May 6th. On Saturday, May 4th, I met with family who were visiting from out of state. I was weak and tired. I looked very pale in the pictures taken that day, but I didn’t think anything was unusual. I was still bleeding heavily. But again, I had been told that was normal. The next day I went to church and visited with my father and family. My husband had kept our son home so I could have a day alone. My dad took me to a movie, as was usual pre-baby. After the movie, I used the restroom and was pleased to see that the bleeding had finally stopped. I was relieved and happy. I didn’t want to have to reschedule my OB/GYN appointment.

Then as I met up with my dad in the lobby of the theater, I was overcome with dizziness. As I grabbed my father’s arm for support, I looked down and saw that my denim jumper was wet with blood, and my white socks and shoes were spotted with red. I fell to the floor fighting to stay alert. In a panic, I called my doctor who told me that I might have a big flow just before the end, and I didn’t need to worry. He told me to go home and clean up and if I was still bleeding in an hour to call him back.

My father was none too happy, but he took me home. It took 15 minutes to make what was normally a 30 minute drive. I know that there was blood all over my dad’s car, but I can’t tell you how much. I can tell you that my shoes and socks had to be thrown away and the jumper was soaked from waist to hem with blood. My husband met us in the driveway, just as I hit the black asphalt. I woke up to the sound of sirens, looking up through the grass into the worried eyes of my dad and husband. Looking back, I don’t know how those two men kept so calm.

About the Author: Maxine Keith has shared her dysautonomia journey in three parts. Check back tomorrow to view the next part of her story.



Check out our partners the Dysautonomia Advocacy Foundation!

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