February 23, 2017 will be a date that will forever be engraved into my life and the lives of the people closest to me. It’s the night that I died…three times…and came back to life to tell my story.
It was a cold, February night. I had been under a tremendous amount of stress. My ten year old had suffered a major concussion at school a couple of weeks prior. That led to several doctor’s appointments, a CT scan, a trip to the children’s hospital when his symptoms got worse, communicating with his teacher to get homework that he could safely do while he was at home recuperating, and a group of unneccessary text messages between his father and me, arguing about his treatment plan and the plan for our son to return to sports. Living with Adrenal Insufficiency has taught me that when I’m under any emotional or physical stress, I need to take extra meds in order to cope like someone who has healthy, functioning adrenal glands. However, when my cortisol levels drop to a certain level, I can’t think clearly and I don’t realize when I need to take the extra life saving steroids. My husband recognized it, but it was too late.
There is a block of time that I absolutely don’t remember. That block of time started right after I told my husband “I don’t feel right…” I was standing in the kitchen and I had just read a text message that apparently dropped my cortisol levels to a dangerously low level. My husband took one look at me, and told me to come lay down and he would get me some meds. To be honest, the meds I truly needed was my Solucortef Emergency Injection. However, it was sitting at the hospital pharmacy….all because…one, I didn’t think I truly had “that” bad of a case of Addison’s…I saw other people posting in our groups and they were constantly in crisis and having to inject, but that just wasn’t me. Also, it was $52 to pick it up and we simply could not afford it at the time. Please read that again. I could not afford my life saving injection that literally could have and would have SAVED MY LIFE!!!!! I started to walk towards him, and I collapsed in the middle of our dining room, not breathing and unresponsive. My husband told my ten year old to call 911 and he immediately started CPR.
It took emergency responders 14 minutes to arrive to our house. They attempted to revive me with no avail. I was in cardiac arrest. They couldn’t locate a good IV spot, so they chose to perform an emergency procedure known as an IO (Intraoasseous Infusion) where they drill into a person’s shin bone and are able to get an IV started. The problem is, the EMT who performed the IO drill led too far into my shin, so all of the medication that they pumped into my system went straight into the tissue of my leg. Since I was not responding like I should with the medication, they kept giving me more and more, not realizing the harm it was causing. A brand new EMT looked at my leg and asked if my leg was supposed to look the way it did. I apparently had compartment syndrome and my leg had ballooned up. Things suddenly took a turn for the worse.
My husband was on his way to the hospital, when all of a sudden I went into cardiac arrest again and my “spirit” visited him in his car. According to him, I told him that I love him and I was saying goodbye. Being the strong-willed person that he is, he told me to get back into the ambulance and start breathing. Although our wedding vows did not include “thow shall obey,” I left his car and started breathing in the ambulance. When he arrived at the hospital, he was met at the door by the hospital chaplain, who urged him to call my parents, as the doctors did not expect me to live. My husband was notified that I would require emergency surgery and they needed him to sign a release for them to operate. Knowing what surgery would do to my body, he insisted that the medical team give me 100mg of Solucortef prior to the surgery. It then became a battle of who would give in first. The person trying to get him to sign the release told my husband that I would die if they couldn’t operate qickly, and he told them that I would die if I did not have the emergency steroids on board prior to the surgery. In the end, my husband won the battle and after I was given the Solucortef, I was rushed into surgery.
The surgery performed was called a Fasciotomy Surgery. The surgeon sliced open my leg on both sides, then sliced all of my muscle and tissue away from my bones and cut them into pieces. During the surgery, I went into cardiac arrest once again. However, the surgery was a success. The surgeon left my leg open, to drain out the overdose of medications they had given me and because of how swollen my leg was, and wrapped it in bandages. I woke up in the ICU, wondering what had happened and why my parents and brother were doing at the hospital at 4am. The next week would become almost a complete blur. Have you ever seen the movie “50 First Dates?” Do you remember the character Tom who had a 10 second memory? That was me… I kept asking what happened and why I was in the hospital. I was told the story over and over again, yet my brain wouldn’t retain the information. My husband was concerned, but they had done a test to see if I had any permanent brain damage, and according to tests, my brain was fine.
I remember small but significant things. I remember seeing recitation pads on my chest, from above my body. I am assuming this was when I went into cardiac arrest in the operating room. I remember my daughter standing at the doors of the ICU and she just broke down and started bawling and grabbed onto my mom for comfort. I remember the nurse telling us that my son who called 911 had to be 11 to be in the ICU, and my husband told her that he was indeed 11, even though she knew he was 10. I remember some family and friends being in the ICU, talking amongst themselves and wondering if I was a ghost.
I ended up needing a second surgery in order to close up my leg, along with a blood transfusion, as I had lost so much blood. I received 85 staples in my left leg and a ton of sutures inside of my leg as well. Life was going on all around me, yet I felt so isolated and alone. I questioned my existence on Earth and really wondered why God had spared my life. I was about to find out.
Once I made it out of the ICU, the initial surgeon came into my room. He said “I don’t know if you remember me, but I’m the one who performed your surgery.” I did not have any idea who he was. When he started talking, it was surreal. He explained what had happened and all I felt was numbness. “So, let me give this to you straight. You had an Adrenal Crisis. You were unresponsive. The paramedics performed an IO into your leg. Somehow, they really f’d up. Not sure how….I’ve performed hundreds of them in the Army, as I am an Army Major. Heck, we do that for fun. Well, this caused compartment syndrome in your leg. I wasn’t even sure I’d be able to save the tissue in your leg, let alone your entire leg. So, here’s the thing…you died…three times in fact. You went into cardiac arrest on your dining room floor. You then went into cardiac arrest in the ambulance, and then you died one more time….on my operating table. Now, I really don’t have an explanation as to why you are still alive. What I can tell you is that the only thing that spared your life was because of your husband’s stubbornness. He refused to sign the waiver to operate until you had your steroids on board prior to the surgery as well as enough to get you through the surgery. That is the ONLY possible thing I can attribute to you being with us today.” I went into a total panic. I hadn’t remembered anything from before that moment, but from that moment on, I remember every little detail. My heart rate escalated and all of a sudden, I had the Psych Team in my hospital room. They gave me Ativan to calm me down and explained that I had severe PTSD.
I remember being so angry. Angry at God for letting me live. For putting my family through Hell. Why was I alive? What was my purpose? Surely, it was not to suffer. However, no one could explain why I was saved. I asked for a Chaplain in the next coming days. I was so confused and just needed some answers.
The first Chaplain came into my room. She was nice and caring. I asked her why my life was spared and what my purpose was on Earth. She said “Your purpose on Earth is to write!” I didn’t understand. “To write? What does that mean?” “I’m sorry but that is all the information I have for you…” I was so upset…that was not an acceptable answer to me, so I asked for a new Chaplain. The next day, I was greeted by another Chaplain. I asked the same questions. And got the same answers. “Your purpose on Earth is to write!” Clearly, this did not sit well with me. So, this time, I asked to speak to the Chaplain that always greeted Mike at the door, telling him to call my family because I was going to die. I again asked him the same set of questions. “Why was my life spared? What is my purpose on Earth? Why does God hate me and continue to put my family through Hell?” All he could say was “Jen, I know this is hard for you…and your family. But all I can tell you is that YOUR purpose on Earth is to write!” “Yes, Chaplain….but what does that even mean????” “You need to be patient. It WILL come to you….” And with that information, I decided to buy a journal.
I spent the next two weeks in the hospital, reflecting on what exactly I wanted to write about in my new journal. I had a lot to say. I had a lot of anger, a lot of resentment towards God, a lot of depression, PTSD, sadness, loneliness. I was a sitting mess. On top of that, Taylor had a talent show that he wanted me to go to because he was singing and he dedicated the song to me. So, I had to get out of the hospital in order to go listen to my baby sing to me. Luckily, they allowed me to leave a day early.
The day of the talent show, I ended up going and talking to the school counselor to prepare her. I explained that I had literally died in front of Taylor and he was going to be an emotional mess for a while, but that I was hoping she could help “check in” with him. She agreed to it and appreciated the fact that I was getting him help. And with that, I hobbled over to my seat with my walker and waited for my baby to sing to me. I cried. Over the top emotional. It was beautiful yet so powerful. A true tribute to how he felt.
The next month was extremely difficult on our family. I often times felt as though I was a ghost. Mike had his own set of PTSD symptoms he was having. He played Xbox video games 24/7. He was trying to process the idea of me not being in his life anymore. What would he do without his best friend? We were tied at the hip. We made a promise to love each other until death. Well, my death was surely imminent. Would he be able to love again? Would he be able to function on his own, without taking care of someone so sick all of the time? He wasn’t sure and I sure as heck wasn’t either.
So, I decided to start writing in my journal. That was not an easy process. I had so much to say. I was angry. Angry at God. Angry for not dying. Angry for what this disease had done to my family. So with my pen, I got it ALL out. I wrote how pissed off I was. How dare God!!!
And then with that, I was done writing…or so I thought. I was still angry, but I had great family support and I also had my mom pushing me to start a “blog.” Honestly, I knew nothing about blogs. But she just kept persisting…pushing me weekly to just start writing. And that is how my blog came to life. I thought about what I would write about. I mean, who would even read it? I was about to find out. I decided to write my story about how I got diagnosed with Adrenal Insufficiency. And that honestly was my only intent on my whole “writing career.” I had to pick a domain, and really gave that some thought. I realized that my old life was over…and this was my “New Normal”. And that is how This Is My New Normal came to life.
I quickly realized that I was actually making an impact on the Adrenal Disease Community. My first “follower” was Winslow E. Dixon. I was pretty excited to have a “follower.” So, I decided to Google this Winslow Dixon, and boy was I intimidated!! She was a blogger as well and a published author. There was NO way I could compete with that. I laugh now because now we are best friends! But I truly had no intention on ever writing again. I’m so glad I did though. I’ve really made an impact on the Adrenal Disease community and I help people daily with inspirational posts and educational pieces. It feels good to help people out. I like being their voice, when they feel as though they have none.
God truly meant what He put out there…my purpose on Earth IS to write. And that is what I intend on doing. Welcome to “This Is My New Normal.”
Below are some things that Mike had to purchase in order to make my life as normal as possible. Of course, insurance wouldn’t cover any of the items. But they were necessary and we just did what we had to do to make things happen. If you ever find that you need any of these items to help you feel normal, please just click on the links below and you can purchase them on Amazon Prime.
I also have an online store on Facebook. Check out the summer t-shirts for Addison Disease Warriors. www.facebook.com/thisismynewnormal