Being a Bad Patient Saved My Life, Part 1

Part 1: A Terrible Itch—and Unspeakable Loss

Everyone knows that I am an autoimmune mess due to an invisible chronic illness comprised of multiple autoimmune diseases. Here is a part of the story that people have never heard. Long before I was an autoimmune mess, I was diagnosed with a rare disease that only occurs during pregnancy.

When I was pregnant for the very first time, other than some initial morning sickness, everything seemed pretty routine as far as I thought pregnancy should be. My doctor’s visits were normal, my health seemed pretty normal, everything was running smoothly. Around the sixth month of smooth sailing over the waters of pregnancy, I started to get itchy. Particularly my feet were itchy and it seemed to be worse at night.

I told my doctor, who quickly informed me that as my skin stretched throughout the pregnancy, itching would be quite normal. This itching didn’t seem normal, though. I itched so bad I could no longer sleep at night. Desperate, I started filling the bathtub with ice cold water and sticking my feet in, trying to make them numb, so I could get relief. The freezing attempts only provided temporary comfort and to my horror, the itching seemed to be spreading. My hands started itching as bad as my feet.

Again, I talked to my doctor and she laughed in a very confused but desperate attempt to humorize something that sounded like a crazy pregnant woman’s plight with swollen, stretched-out skin. I insisted that this had to be more than that but she didn’t seem to think so.

Nurse and patient.
My doctor laughed in a very confused and desperate attempt to humorist a crazy pregnant woman’s plight with swollen, stretched-out skin. Source: Pixabay.

I drove home from the office wondering if the entire thing was just in my head? Was I just zooming in and magnifying a normal annoyance of a changing pregnant body?

No matter what the answer was, the itching continued. I no longer slept at night. Sometimes I would fall into an exhausted two or three-hour nap in the morning but any sleep I did manage to get was soon interrupted by the incessant itching. I was now scratching the skin off in places on my hands and feet.

I looked like I was covered in sores where I had tried to relieve the unrelenting itching.

Finally, around my eighth month of pregnancy, I started having some contractions. I went to the hospital and was told it was just Braxton Hicks, or “practice contractions” that some women have during pregnancy. While I was there, an intern was in my room and looked at the condition of my hands and feet where I had scratched. As he talked to me about my Braxton Hicks he refused to touch me. Before they sent me home, I tried to explain that I was extremely itchy and needed to scratch all of the time, and he looked at me like I was crazy.

The disdain on his face was evident to all and I felt truly erratic and humiliated all at once.

The end of my pregnancy finally rolled around and by this point, I was a scratched up shell of myself. Months of staying up all night with my hands and feet in ice cold water had taken its toll on me. When I finally went into labor I was so relieved it was almost over.

As I settled into the hospital bed to begin the final step in this long, arduous journey, the nurse expertly hooked me up to all of the typical monitoring machinery and flipped them on. She began fidgeting with the monitors, moving them here and there, trying to get them to read. After a minute or two of this, her face took on a look of worry, panic, and fear. She quietly got up and called for a doctor.

She sat back down and said in as sweet and caring a voice as she could muster, “I couldn’t find a heartbeat but I need a doctor to confirm that. I’m so sorry.”

Naturally I am filled with terror, yet there is still this vain, fleeting hope that the doctor will waltz in and we will all hear the little thump, thump, thump that I had been living with for the last nine months.

Waltz in the doctor did. She sat next to me, moved the monitors around for several minutes and quipped to the nurse, “Yep, the baby is dead.”

The nurse’s mouth dropped at the doctor’s heartless way of announcing this news then looked at me to apologize.

Her apology caught me going into shock. The entire room sprang into action with people running in and machines being moved all around. I just remember being so cold I was shaking violently and then so hot I thought I would die just trying to breathe.

Several hours later I gave birth to a perfect, beautiful baby girl who when I looked at her was like looking into my own face. Just, she wasn’t alive.

Miraculously, the itching stopped almost immediately after delivery.

The only explanation that I received from the doctors was that sometimes these things just happen. I should just try again.

And I did. They hooked me up to a non-stress test throughout my pregnancy several more times, but other than that my care remained the same.

And the same exact thing happened all over again.

I started itching, I went into labor, the baby died.

I buried two babies within the span of two years.

After my son died I requested an autopsy which revealed nothing clarifying. Something wasn’t right. He also was perfect and beautiful with a shock of red hair that I loved. There was absolutely nothing to indicate what had gone wrong in their precious little bodies to cause them to die. I needed answers.

Clearly, after the second stillbirth, I was not planning on being pregnant for a very long time if ever, but I had physical complications from the birth control I started and much to my dread and horror, I realized I was pregnant merely a few weeks later.

I wept over the two pink lines that appeared on that pregnancy test. I knew that I had exactly eight months to figure out what was going on or it would happen again. I felt like I was trying to dismantle the walking time bomb of my mysterious pregnancy.

That is when I became a bad patient.

Click here for Part 2

Read more about Nikole here and check out her blog.

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