“Do you take this woman to be your wife, in sickness, and in health?”

Most men who are asked this question rarely give it any thought before blurting out, “I do!” My husband is not “most men.”

Mike and I met in February of 2012. We worked together and quickly became friends. He was aware that I had an undiagnosed illness, but aside from knowing that, at times, I became very sick, he didn’t know much about the daily struggles that I faced. Mike’s first look into my illness came in June of 2012. I was driving and he was sitting in the passenger seat of my car. I all of a sudden felt extremely nauseated and he quickly dumped out his coffee and held his cup for me to puke into. The next few months, he would get more brief looks of my illness. I would go periods of time where I felt great and we had a lot of fun together, going crabbing and fishing. Once we lived together, Mike started to see my daily struggles and he took a hands on approach to try to help figure out what was wrong with me.

On December 9, 2013, we were in Las Vegas for a work convention and we became engaged. My doctor at that time thought that I had a gluten allergy, so Mike made sure that I would not be exposed to gluten. We went out to eat and I got very sick, even though nothing I was eating had gluten in it. Mike made the decision for our entire family to start eating gluten-free food and he removed all food from our house that could potentially make me sick. We stopped eating out, for fear of cross contamination. Although this seemed to work a lot of the time, it would prove to not be the answer we were hoping for.

Mike had to take me to the emergency room quite a few times, and at this point, he felt like he was able to help with my illness, talking with the doctors, rubbing my back when I felt pain and running hot baths when I was puking. The next symptom that came was about to turn his life around and leave him with a sense of hopelessness. I started randomly passing out and not breathing. Mike had to perform CPR on me, and he suddenly took on a new role. The doctors were perplexed as to why this was happening. Mike felt certain that he would come home one day and find me dead on the floor. This left him feeling helpless and scared. Although Mike was deeply in love with me, the fear of losing me to my illness took over and he decided to leave me.

I was heartbroken, but on one level, I understood. It takes a great deal of courage to be with someone who is chronically ill. Thankfully, it took less than a week for Mike to realize that he would rather be with me and risk losing me to my illness than to not be in my life. And so, on May 9, 2015, when he was asked if he took me to be his wife, in sickness and in health, he courageously and boldy said “I do!”

We honeymooned in Puerto Vallarta. The first couple of days were amazing. We felt like we were in paradise. We soaked up the sun, went swimming, got henna tattoos, and booked some adventures that we always had wanted to do. One of those adventures was deep-sea fishing. We had a blast, but I ended up getting sick and for the remainder of our honeymoon, I remained very ill. I encouraged Mike to go have fun without me, but he refused to leave my side.

The frequency of me getting sick and passing out started to increase, even after my diagnosis of Adrenal Insufficiency. Mike was forced to start wearing several hats. Because of the amount of time I was unable to work, he had to work extra hard to provide for our family. He became the sole provider, the parent who picked up and dropped off kids to school and sports practices, the cook, the house cleaner, a scholar of Adrenal Insufficiency, emotional supporter for the kids and family, and his biggest and most challenging role…my caretaker and advocate.

Last August, I underwent a surgery that for most women is an outpatient surgery. My surgeon consulted with my Endocrinologist to help ensure the correct protocols were taken for the surgery. The surgery, itself, was a success. However, the medical team that was in charge of my care after the surgery failed miserably and I ended up in the ICU. The doctor knew little about Adrenal Insufficiency and decreased the dosage of the corticosteroids that my body requires in order to maintain life. This caused me to be in a constant state of Adrenal Crisis and I was fading fast. Mike was outraged and scared. He felt completely helpless and unheard, as the doctor refused to listen to him. He spent countless hours researching online medical documentation that he could show the doctor to help educate him, but the doctor still refused to hear him out. Mike decided to take control and started giving me my medication from home, without anyone knowing. My vitals started improving and I made it out of the ICU, and after two weeks of being in the hospital, I was able to come home. The recovery was long and slow. I was in an incredible amount of pain, which lowers the level of cortisol in my body, so Mike had to be extra aware of how I was doing every minute of the day. Because I can’t think clearly when my cortisol levels are low, he took charge of my dosing schedule. This was the first time he had to monitor me 24/7, but it wouldn’t be the last.

On February 23, 2017, I collapsed and was unresponsive. For 14 long minutes, he administered CPR, while waiting for emergency responders to arrive. As the minutes slowly went by, Mike started questioning whether or not I was going to have permanent brain damage from lack of oxygen. Knowing that I would not want to live that way, a part of him wanted to stop performing CPR. However, he kept looking at my 9 year old son, who was on the phone with 911, and he knew that he couldn’t stop. The paramedics, firefighters and police arrived. As I was in cardiac arrest and they were working to revive me, Mike was being questioned by the police. 45 minutes later, I was in the ambulance and he started the drive to the hospital that would cause emotional scarring like he had never felt before. I went into cardiac arrest in the ambulance, and my spirit appeared in Mike’s car. I told him that I love him and I was saying goodbye. Mike spoke to my spirit in a way he had never spoken to me before, and told me to get back into the ambulance and start breathing. My spirit then disappeared. He braced himself for how he was going to tell our kids that I didn’t make it, as he thought for sure that this time was the deadly crisis that lead to the impending death that he had feared for so long.

When Mike arrived at the hospital, the chaplain was waiting for him. He told Mike to call my parents and family because they did not expect me to make it. He was then approached by a doctor, who explained that the EMT’s had messed up the I.O. procedure and with the deadly amount of medications they had given me, it caused Compartment Syndrome in my leg, and I had to be rushed into emergency surgery, which required his consent. Mike told the doctor that I would need an injection of Solucortef, a liquid form of my corticosteroids,┬áprior to surgery. This turned into another tug of war battle between a doctor that knew little about Adrenal Insufficiency and Mike, who knew that I would surely die without the medication. Mike persisted and only signed the consent forms once they had given me the Solucortef. Although I would end up going into cardiac arrest once again on the operating table, the surgeon later admitted to me that he truly believed that the only possible explanation that I survived was Mike’s persistence.

The next two weeks in the hospital provided Mike with a range of emotions, yet he subconciously put himself on auto pilot to make sure that I stayed alive. I had severe PTSD, which blocked me from having any short-term memory. He was afraid that this would be permanent. The initial few doctors who were in charge of my care would not listen to Mike when it came to the dosing schedule of my corticosteroids. Each night, before he left the hospital, he would tell my nurses what to expect, how to handle it, and to call him, knowing that I would go into Adrenal Crisis since the doctors wouldn’t listen to him. Eventually, the CEO of the hospital and the head of the department met with Mike to work together to put a care plan in place. For the first time, Mike had gained total respect for his knowledge of Adrenal Insufficiency and what was required for my care.

When it was time to come home, Mike was physically prepared, but not emotionally. He had purchased a walker, crutches, and a shower seat for me. He set up a bedroom for us downstairs, bought a daily pill-box and filled the box with all of the medications and supplements that I needed to take. He had me install an app on my phone that reminded me which pills to take and when. He comforted me when I cried, yet he was going through emotional turmoil inside. He spent hours upon hours playing video games, trying to avoid feeling the deep sadness and the thoughts that plagued his mind. Mike finally opened up to me, once I started counseling. He admitted that he had been emotionally distancing himself from me so that he would be prepared for when I die. He had thoughts of starting to do activities that we normally would do together, without me, because he thought he had to get used to the idea of me one day not being there with him. However, after a period of time, he realized that he would rather enjoy as much time as he could with me than to prepare himself for me not being alive. He stepped down from his management role at work, and he focused all of his time when he was not working to create as many happy memories with me as possible. To this date, he has continued to put “life” first and work second.

A few weeks ago, I decided to cut back on my corticosteroids. It started with wanting more sleep at night, but when I started getting comments about how I looked like I had been losing weight, it turned into hopes of losing more weight that I had gained from being on the medication. It was a small decrease, but it was enough to start causing symptoms to pop back up, which included the brain fog that doesn’t allow me to think clearly enough to realize when my cortisol is too low. Although I felt like I was surviving ok, any amount of stress started eating up my cortisol quickly. A little over a week ago, I had some extra stress one day and it was enough to cause another huge Adrenal Crisis. Mike found me unconscious on our deck. At first, he thought that I was sleeping because he could see me breathing, but then he realized how shallow my breathing was. He called 911 and injected me with my emergency injection of Solucortef. I had slipped into a coma. He called my parents on the way to the hospital and was greeted once again by the chaplain, saying that he was there to offer his condolences. My mom asked the chaplain if I was dead, and he said that he wasn’t sure. They had to wait an hour before the doctor came to tell them that I was in the ICU, but alive. Once we were home from the hospital, Mike asked me about my reasons for lowering my dose. The look on his face when I told him was of pure heartbreak.

Although I have endured a lot with my illness, Mike has experienced more than I could ever possibly imagine. He is the bravest, most caring man I have ever met in my life. I would not be alive today if it were not for him. There are not enough words to express to him how much I love him and how much I appreciate each and every single thing he does for me and for our family. Like I said before, he’s not “most men.” He meant it with all of his heart and soul when asked “Do you take this woman to be your wife, in sickness and in health?” and he said “I do!”

“You have Adrenal Insufficiency…”

Four words that would change my life forever….”You have Adrenal Insufficiency…”

Hi, my name is Jen and I have an incurable disease. How’s that for sounding as though I am at a 12 step program meeting? In March of 2016, I was diagnosed with Adrenal Insufficiency, also known as Addison’s Disease. I had no idea how four words would change my life so drastically. But my journey didn’t start there. Let’s back up a bit….

It was New Year’s Eve of 2008. My ex husband and I went to Los Dos with our best friends to celebrate. Before our drinks or food came, I suddenly got a stabbing pain in my stomach and had to run to the restroom so that I didn’t puke all over the table. We left the restaurant and I continued to puke for several hours. The pain was so awful that my ex husband decided to take me to the emergency room, in fear that I had appendicitis. The doctor ran tests, gave me nausea and pain meds, and said “I have no idea what’s wrong with you…” Little did I know that for the next 8 years, I would hear that sentence over and over again. Little did I know that when I woke up on December 31, 2008, that would be the last day I would ever wake up not sick. Little did I know that my life was about to change forever.

The next 8 years of my life were spent in and out of emergency rooms, doctors’ offices, specialists’ offices and more hospital rooms than I can remember. I felt like a human lab rat. Hundreds of tests run, multiple different medications given to me that didn’t work, and doctors that either guessed at a possible diagnosis or simply decided that it was all in my head and I was just drug seeking. I literally felt like I was dying. I constantly had nausea and pain in my stomach. I went through long periods of time where I couldn’t even keep down water. I had uncontrollable anxiety, brain fog, low energy and I kept passing out and not breathing, for no apparent reason. My ex husband left me, the majority of my friends disappeared, my career fell apart and I could barely take care of my kids, let alone myself.

Fast forward to March of 2016. I was admitted into the hospital. This was nothing new to me, as I had come to refer to the hospital as my second home. However, one thing was very new to me….a doctor that refused to let me leave without figuring out what was wrong with me. Her name is Dr. Lam and I honestly don’t believe I would be here today if it were not for her persistence. Unlike all of the other doctors who had treated me in the past, Dr. Lam looked at my records and decided to run tests that were not already run a thousand times before. I was cautiously optimistic for the first time. She decided to discharge me, while waiting for some tests to come back and promised that she would call with the results. And when that call came in, my life would soon be changed.

“You have Adrenal Insufficiency…” Come again?? She started talking about cortisol levels and how I needed to see an Endocrinologist and be placed on corticosteroids right away. It was as though she was speaking to me in another language, yet I was so excited. As she was talking, my brain started to race. Could it be that this is the answer? Will I really be better if I just start taking medications? Will I finally feel normal again? I hung up and called my doctor right away. She had me come in that day and started me on Hydrocortisone. She explained what Adrenal Insufficiency was and gently told me that there was no cure for it and that I would be on corticosteroids for the rest of my life.

I was ecstatic that I was finally diagnosed! If taking a few pills every day would make me feel normal again, sign me up! I gladly had my prescription filled. I told all of my family and friends and everyone who had known how sick I was for years about my new diagnosis. This was it….my prayers had been answered! I had no idea that those four words would change my life forever, and I was about to embark on a whole new journey that I refer to as “My New Normal…”