There was a moment several months ago in December that I really thought I was going to die. That moment was followed by several other events that have put me on medical leave from work and dependent on others to help with every day tasks like grocery shopping.
It was an exciting day. It was my last day of work before we drove to Florida to spend Christmas at Disney World with Grandma and Grandpa. We had been planning this trip all year, and the car was completely packed and ready to go. I had gone to the store to pick up a few last minute things on my lunch break at work when something happened. While I was standing in the checkout, I got really hot. I started to sweat, my pulse was racing so fast that I couldn’t count between the beats, and I was covered in hives. I sat down and pulled out my epi-pen. I had just started a series of allergy shots and had asked the doctor for the epi-pens, just for peace of mind. I have never had a serious allergic reaction to anything in my life, but at that moment I was very glad to have them.
I debated on whether or not to use it but I knew something was wrong, and it was not just anxiety. With my pulse racing that fast, pumping myself with epinephrine could be counter productive. I started fading in and out and realized that if I passed out, I wasn’t waking back up. The employees in that store were just kids. They wouldn’t have had any idea what to do so I took a chance. I stabbed myself in the leg with the epi-pen. Immediately my heart started slowing down and my temperature regulated. When the ambulance arrived, they told me I was definitely having an allergic reaction and I had done the right thing.
At the hospital, the doctors were afraid to treat me because they were unsure what really caused the reaction. After several hours of being monitored and a few rounds of Benadryl and steroids, they sent me home. The doctor told me I was ok to go ahead with our vacation if I felt ok in the morning and to follow up with my regular doctor when we got back. I had to go to Florida. Disney world was my kid’s entire Christmas.
When it came time to leave in the morning, I wasn’t feeling great, but I did feel better. I was going to stay on the highways during the drive, just incase something else happened and I told the kids to watch the mile markers so I knew what to tell the ambulance if I had to call one. An hour in to the trip, it started happening again. I pulled over at a gas station and I cried. I was in an unfamiliar town, with three scared children, about to have to use an epi-pen again. I held off using it knowing it would require another day in the ER and asked someone to call local EMS to monitor me until I could have someone drive down and follow me back home.
I felt defeated, I felt like I had ruined everything. We had to go home. I just couldn’t make the trip. When I tried to eat, I realized my body wasn’t accepting any foods. I couldn’t use any hygiene products or makeup either. There was something very wrong. Two days later my kids woke up on Christmas, to absolutely nothing under the tree. There were no presents, no Christmas dinner, and their mom was laying on the couch fading away. For the next two weeks, I lived off of collards and rice. I lost 20 pounds very quickly and my doctor was just as confused as I was. She scheduled me an appointment with an immunologist and I tried to get back to life as normal as possible.
A few weeks later, I was sitting at my desk at work and something felt wrong again. I couldn’t stand up or breath very well. I knew it wasn’t anaphylaxis, but I had to go to the emergency clinic. That appointment revealed an abnormal EKG, and my job ended up putting me on medical leave. I was scared again. I needed to be better and I still had no answers. My mom came up from Florida for over two months to help me with the kids and my appointments until something was figured out.
When I finally saw the immunologist, he mentioned something called Mast Cell Activation Syndrome and started treating me for it. It is a rare auto immune disorder that basically makes you allergic to things you’re not truly allergic to. Your body sees things that are not dangerous as invaders and attacks in various ways. There is no cure for it, but the treatment seemed to be working. Within a few more weeks, I had been able to add some more foods to my diet, but was still having a hard time doing anything alone.
It’s been a little over three months since then, and I am on a complex medication schedule, a strict diet, and constantly monitoring my own vitals. I feel I have regained enough strength to go back to work part time, but I am still waiting on a miracle to get my body back in line completely. No doctor in the world could ever convince me that this is truly permanent. There might not be a cure from doctors, but I know my God doesn’t work in the natural world.
I have had people leave me through this process, and I have had people step up to help as well. I have learned that slowing down is so important, and we all need to take a mental and physical break from life to stay healthy. I also learned that I don’t need makeup to feel good about myself. Even if I can wear it again, I probably won’t. I learned that what we put in to our bodies is vital to longevity, and what we put in to our minds is equally as important.
When your auto immune system crashes like mine did, you have to slow down. It makes you miss the little things. Setting my alarm clock on a Sunday night to go to work Monday morning, is one of those things. It makes you crave normalcy and simplicity. It makes you enjoy even the most miniscule of tasks. Walking to the mail box with the sun shining on my face is something I look forward to. As I continue my journey to healing my body and my mind, I will continue to share what I have learned. When you go to set your alarm clock on Sunday night, remember me, and smile. Take a moment to thank God for your normalcy, and your health as you go to your boring 9-5.