Back Again.
Day 12
September 12, 2024
It all started the night of September 10th. My feet were ice cold. Especially the numb right one. Socks didn’t work, blankets didn’t work, hot water didn’t work. I hate being cold. It’s my Achilles’ heel.
I will never forget the coldest I have ever been. Patriots Parade, Boston, February 7, 2017. 34 degrees Fahrenheit with light snow and a 20 mph wind. The “feel like” temp was 22 degrees F. School was canceled and my mom, her friend Timi, and one of my friends were headed to Boston. This was about a week before I was headed to Iceland and I had all the gear. Insulated Muck boots, a scarf, a hat, mittens, and a long thermal North Face jacket with a Pats jersey squeezed over it. I geared up and met my mom in the driveway.
“Steph, are you seriously going to wear ALL of that?” my mom laughed.
“Ummmm yeah. I HATE being cold. And you aren’t cold if you dress for the cold and I am super happy with my outfit!” I couldn’t believe she wasn’t dressing warmer. Well, I had warned her. To be fair, neither one of us had actually looked up the weather. We had been outside to check but there is a huge difference between a 5 second temp assessment and the reality of standing outside for hours.
Our friends came over and we hopped in the car. We laughed about the fact that school had been called off. There was hardly any snow. My friend and I were both teachers and we loved a good snow day. On the way my mom mentioned that my Uncle Michael was also at the parade and he had brought his grandson Connor.
We arrived in a little over an hour and the streets were covered with slush. Before it started snowing it had been raining. So now there were slushy rivers of various depths everywhere. Luckily, my Muck boots were waterproof—smart choice I thought. I had never been happier with my choice of attire than at that moment.
We texted Michael and made a plan to meet up. I will never forget the shock of what I saw just a few minutes later. There was Connor. He was ten years old and Michael’s tagalong. He was wearing a WINDBREAKER and SNEAKERS. He was shaking like a leaf. Michael did not share the same aversion to the cold and despite also not being dressed warmly, seemed unfazed.
Suddenly my happiness evaporated and was replaced with guilt. I couldn’t let him freeze to death. I decided to find a place we could go so he could take off his sopping shoes and warm up for a little bit. I found a spot and we went inside. Being inside was warmer, but his feet couldn’t warm up. My feet were toasty in my boots so I told him to slip them on for a few minutes. I stepped into his shoes…they fit. Oh man, it was a sign.
Flash forward 20 minutes and we returned to the parade. This time I was dressed like a unprepared 10 year old boy and he was bundled up for a proper hike in the Arctic. It only took about ten minutes before my feet felt like they were going to fall off and I was visibly shaking. It was the longest 2 hours (or more) of my life. It’s all a blur now.
After what seemed like an eternity, we were on our way to CVS. The tears stung in my eyes from the biting cold. It really was that bad. My mom, Timi, my friend and I walked in silence—too cold to speak. And then there was Connor. I swear he was skipping, laughing, and living his best life. I was glad he was warm, but man was I ready to switch back. How do you know you’re warm? Oh, you can speak, right. The steps off the curb felt awkward and shaky because I could no longer feel my feet. Something I never realized before is that when you are that cold, warming up HURTS. I decided that I liked Tom Brady, but maybe not this much…haven’t been to a parade since.
This was the absolute coldest I have ever been. Chicago was cold. Iceland was cold. But I was dressed for those. I swore that I would never let my feet get this cold again.
Until now. Now, my feet were as cold as ice—in fluffy thermal socks and a warm bed. Pretty much the worst. In addition, overnight my right leg felt as if someone tied a tourniquet above the knee. It was throbbing and pulsing and I was up all night tossing and turning with the pressure.
At one point I stood up, praying that the blood would run down my leg and relieve some of the sensations I was feeling. It did get slightly better for a minute and then I laid back down. It was like when your leg falls severely asleep but doesn’t wake up. Instead it tingles and the pressure builds until it feels like it is going to explode.
This continued and my family encouraged me to report my symptoms to the surgeon. I was very reluctant to do this because I assumed my circulation was tied to the nerve damage in my right/leg foot. At 2:00 pm I received a call from the surgeon. They wanted me to return and have a vascular test to rule out a blood clot.
Back to the ER we went. Back in the wheelchair I went. In, check in, security, registration, and then to a bed. I set off the alarm going through security.
“No pockets right?”
“No.”
I couldn’t figure out what would have set it off. I racked my brain. Then I remembered.
“Must be the staples in my back,” I smiled and lifted my shirt to show the train wreck that had replaced my sun-kissed summer glow. My bronzed back had now been hacked, stapled, and stitched. Not like the tan mattered now. Now it was overshadowed by the scar-in-progress.
“Emergency spine surgery,” I explained.
“Owww, that’s serious.”
“Yeah, I’m not supposed to be sitting.”
I went to the waiting room and awkwardly laid across one of the wider benches. Only ten minutes passed before they called my name and got me a bed.
A nurse came in. “Hi, I’m not your nurse. I’m just helping out your nurse and I’m going to get some things started.”
She took my blood pressure and proceeded tie an elastic around my upper arm. She pulled out a needle and I looked away. Wow, was that uncomfortable. Suddenly it was clear why she wasn’t my actual nurse. Judging from how that went, I was probably her second attempt at taking blood. She walked away and I realized she had inserted a catheter in my arm. A catheter? I was here for an ultrasound. I asked her about it and she said, “It’s protocol.” Perfect, I thought. Now the needle that felt like it went through my vein and not into it would be dangling from my arm for the foreseeable future.
“Hey, how are you?” I looked up and saw the ER doctor that had ordered my MRI and called the neurosurgeon for me just a week ago. His name was Dr. Matthew Zogby.
“Hi! Thank you so much for taking great care of me. I’ve read so many stories. So many people get turned away from the ER, don’t get the MRI, and end up paralyzed. Were you surprised it was Cauda Equina?”
“Yeah, I was a little surprised. I was talking to a couple of colleagues about it. You didn’t present with the typical weakness associated with Cauda Equina when you came in so I was really unsure about it.”
“Well I really appreciate it, I can walk. And that isn’t the outcome for everyone, thank you so much!”
We talked for a few more minutes and he got me the last appointment at the ultrasound lab. They conducted test on each leg and brought me back to the ER.
The nurse came in, the actual nurse, and he said, “Oh, I guess she can’t get blood out of that catheter so I will need to put another in your hand.”
I wasn’t surprised. The one in my arm I’m pretty sure went THROUGH the vein… “Ok,” I said. He took blood and sent it to the lab. After he left in walked Dr. Lambert. He was the resident neurosurgeon who had been with me from my ER visit through discharge. It’s funny how it’s exciting to see your care team. We talked for a few minutes and he performed the strength tests again.
My right foot could still not pass the strength test. This wasn’t surprising since I couldn’t feel it. My heel was numb. The sensation in my foot ended about an inch above my heel. This left me feeling like I was walking on a rock constantly. Like a permanent shoe that didn’t extend to the toes, making my walking uneven. This was impacting my gait, knees, and hips.
The rest of my tests came back clear. Dr. Lambert told me that the circulation issue was unrelated to the nerves. That if nerve damage was causing the problem, my foot would feel cold, but not actually be cold. And my feet were COLD. They didn’t give me much explanation but maybe just lying down instead of being on my feet 14 hours a day was having an impact.
I pulled my thick, wool, winter socks back on and dragged myself back into the wheelchair. After what I had been through I was less reluctant to use a wheelchair. I definitely wasn’t strong enough to walk the entire length of the hall and even if I was, I was so unsteady on my feet that I was a fall risk. And falling was not something I needed right now.
Jay got the car and we trekked back home. Icy toes but blood clot free.
Shout-Outs!
Thank you so much to everyone who has checked in, offered to help, sent flowers, gifts, and came to visit. ❤️
Aunt Carol
My sweet Aunt Carol came over with a card and a light-up pumpkin bowl with gorgeous white flowers planted inside. Love you Aunt Carol! 💜
Brittany & Lori
Britt and Lori sent me the sweetest gift basket with gifts and a few activities for the kids. I loved everything, love you guys! 💛
Mom and Mark
Mom and Mark being the “glue.” Helping to cart my belongings here, there, and everywhere. Taking excellent care of the kids, cleaning my house, and assisting with literally EVERYTHING. Love you both! ❤️
Surviving Cauda Equina Syndrome 