My name is Lori. I’m the face behind A Story of Being Human. My passion for storytelling and advocacy goes back a few decades, when I started working for a grassroots disability advocacy organization, New Horizons Un-Limited.
One of my favorite parts of that work was meeting people who had lived a life I knew nothing about and hearing their stories. Little pieces of each story have stayed with me all these years and shaped me into who I am. Seeing as so many beautiful humans have been vulnerable with me, by sharing their stories, it’s only fair that I drop my veil and share mine. If I’m being honest, this isn’t super easy for me, but here goes.
March is Autoimmune Disease Awareness Month, and this is my story…
Everything changed during my second pregnancy with my now 8 year old son. It started in my first trimester. I was chatting with a coworker, and suddenly I couldn’t breathe. I was gasping with each breath and it felt like they never fully reached my lungs. I called the nurse line at my OBs office, they quickly told me to go to the nearest emergency room.
They feared I had a pulmonary embolism. They hooked me up to all sorts of monitors, checked for blood clots. They didn’t find anything. They sent me home with no answers, no instructions. My breathing normalized and I went on with my life.
At my next follow up appointment my doctor didn’t bring this episode up. I was too embarrassed to bring it up. I figured if it was a big deal she would have addressed it.
I remember feeling particularly fatigued during this pregnancy, even in the early days. Walking the few blocks into work each morning felt like I was walking through quicksand. It was exhausting. I made sure to mention how fatigued I felt at my next appointment. But knowing me, I probably laughed it off too much for my doctor to take it seriously. I did that a lot. I didn’t want to come across as a whiner. Why was I like that?
She told me to be sure to eat enough calories, stay active, and rest when I could. So that’s what I did. I went on with my life.
During one of the later growth scans they noticed my baby to be was measuring quite large for his gestational age (his head was particularly large) and that there was an excess of amniotic fluid. (Which wasn’t surprising because I was HUGE, huge.) While this wasn’t overly alarming, they started seeing me weekly to keep track of his and my growth.
During these visits I would routinely bring up my extreme fatigue. My doctor would always have one reason or another why I’m probably feeling more fatigued than what I thought was normal. She never offered any sort of follow up tests or anything that might give me answers.
Well into my second trimester I was walking to the local park to meet a friend with my older son. It was a beautiful summer day. Not too hot. About two blocks in I started seeing spots, and then my vision blurred, I was about to pass out. I sat down on a neighbor’s lawn and told my son that I just needed a break. He was only 5, I didn’t want to scare him.
I called my friend and asked if she could come meet me where I was sitting. I honestly don’t remember if she drove me home or I walked. When I got home I called the on call doctor. He suggested that maybe the heat and lack of calories caused me to get light-headed. I ate a banana and convinced myself I felt better.
Once again, my doctor did not call attention to this episode at my next appointment. And once again, I went on with my life, because, clearly I just needed to suck it up. This is just how pregnancy is, it’s exhausting.
At least that’s how everybody who was supposed to take care of me made me feel.
I was so exhausted. I could barely walk, barely breathe. I was miserable. But I stopped bringing it up. I was not a good self-advocate at the time, but this experience lit a fire that hasn’t stopped burning.
About a month before my due date my doctor decided that a VBAC might not be the best option, given my baby’s size, and prior delivery complications and subsequent NICU stay with my first son (that’s a whole other story, I had really bad luck with OBs.)
So we scheduled a C-section at 38 weeks, mostly because the amniotic fluid kept building up. He was born healthy, nearly 10 lbs and 22 inches long. He was big, especially for my slight, 5’2″ frame. (Which, as it turns out, his size was a result of my continuing symptoms.)
We all went home after the typical 2 days in the hospital.
Shortly after getting home I ended up getting really, really sick. To the point that I was too weak to even lift or hold my big boy. I couldn’t take care of him. I wasn’t producing the milk he needed to thrive. It was heart wrenching. I felt like a failure as a mom.
I once again called the nurses line, and what do you suppose they told me?
To be sure I stay hydrated.
It took me weeks to recover…but in reality, I wasn’t really recovering, I was just surviving.
There was a period where I felt okay. My boys kept me active. I was still dragging myself through the days. Falling asleep at my desk. Forgetting the simplest things. I was in a haze. So tired.
Then it leveled me! One night I was too weak to lift my arm to brush my teeth. I was scared at that point. I knew something was very wrong.
Thankfully I was able to get into my husband’s wonderful doctor, who has a small private practice, the day I called. He ran a blood panel and referred me to an Endocrinologist. They got me in the next day.
Just one simple blood test is all it took.
I had undiagnosed Hashimoto’s, an autoimmune disease that attacked my Thyroid. It’s quite common, particularly in pregnant women, and manageable…if it’s treated.
My TSH (Thyroid Stimulating Hormone) Reflex was 79.85. The normal range is 0.35 – 5.0
When the Endocrine doc saw my numbers she was shocked and said, “I can’t believe you drove yourself here, or are even standing. How have you been living this way for so long?”
I’m sure I smiled and laughed it off. Because honestly, I had no idea.
Finding the right dosage was tough. Too much medicine caused symptoms of HYPERthyroidism, which paired with my long-standing Anxiety made life unbearable in other ways, insomnia, extreme mood swings, rage, the “shakes.”
Even though medical professionals will tell you otherwise, there’s no magic cure with a pill. I changed my diet, I started a probiotic/prebiotic regimen (which helped a ton), I exercised when I had the energy. I slowly started to feel better.
Recently I had someone who has known me for a very long time say to me, “You’re always smiling. I just wanted to check in and be sure that you’re not hiding anything behind that smile.”
He saw through me. I used my smile as a shield (that last photo was two days before my diagnosis…my smile didn’t reach my eyes), probably to convince myself, more than others, that I was okay.
So here’s the thing…
Listen to your gut. Advocate for yourself. If it doesn’t feel right, it probably isn’t. Find a doctor who will listen. Talk about what you are going through. You never know who you might help.❤️
New Horizons Un-Limited 
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