This Is My New Normal

I was diagnosed with Adrenal Insufficiency on March 23, 2016. When I met with my first Endocrinologist, we’ll refer to her as Dr. W, I knew nothing about Adrenal Insufficiency so I took a notebook with me, prepared to take lots of notes. In a nutshell, this is what Dr. W told me…”Take Hydrocortisone twice a day, I’ll see you every 6 months for labs, and you’re going to be able to live a normal life again!” The “2016 me” was beyond ecstatic, after suffering with symptoms for over 8 years. The “2018 me” rolls my eyes and wonders how this doctor ever made it through medical school, let alone becoming a “specialist” in medical care.

If you’re anything like me, I love knowledge! As soon as I was diagnosed, I started spending hours upon hours researching my new diagnosis. I found support groups on Facebook, with people who were members that each had their own Endocrinologists and ranged from being newly diagnosed to having Adrenal Insufficiency for decades. I quickly realized how much Dr. W did not tell me, and after having a couple more appointments with her, I realized that I knew more about my illness than she did. As you can probably guess, I fired Dr. W and found Dr. C, who is very knowledgeable and has an appreciation of the fact that I probably know just as much about Adrenal Insufficiency as she does.

Over the past couple of years, there have been many newly diagnosed people who have joined the support groups on Facebook and have posted questions, desperate for answers, just like I had been at one point. Over time, I have become very frustrated because of the overwhelming number of newly diagnosed people who’s doctors were basically telling them the same thing Dr. W told me, and nothing more. So, I figured I would compile the Top 10 things I wish my doctor would have told me when I was newly diagnosed. I’m not a medical professional, and before you change anything in the care of your Adrenal Insufficiency, you should consult with your doctor.

1.“Taking Hydrocortisone 2 times per day will not be enough!” Hydrocortisone stays in a body anywhere from 4-6 hours at a time. When I took my Hydrocortisone twice a day, I would feel great for about 2 hours each time I took them, but felt horrible the rest of the day. Little did I know, after the Hydrocortisone metabolized out of my body, I had no cortisol in my system, which is why I felt so horrible and continued getting sick. A normal body creates cortisol 24 hours a day, so it would make sense to take the medication that is supposed to replace the lost cortisol, as closely as possible to how a normal body would create it. In order for that to happen, a person needs to take Hydrocortisone between 4 to 6 times per day, depending on how quickly their body metabolizes the Hydrocortisone.

2. “How much and when to take Hydrocortisone matters!”In order to mimic a normal body’s output of cortisol, you have to take Hydrocortisone in a way that will be as close to how the body produces cortisol as possible. How do you do that? You have to follow the Circadian Rhythm dosing schedule. For me, since I metabolize Hydrocortisone every 4 hours, that means I need to take it 6 times a day in order to have 24 hour coverage. Is it a pain in the butt? It sure is….I have to set alarms and even wake up in the middle of the night to take my meds. Is it worth it? It absolutely is! Before I started following the Circadian Rhythm dosing schedule, I just guessed at how much I needed to take every time. I knew that normal bodies had higher amounts of cortisol in the morning and very little at bedtime, so I just took the highest amount when I woke up and tapered down during the day, and took my last dose at bedtime. This schedule not only had me feeling awful when I first woke up and having highs and lows throughout the day, but I was also over replacing my cortisol at times during the day and I had no cortisol in my body at night and early in the morning, when a normal body would have cortisol.

3. “You will have to stress dose!”Do what? Dr. W never told me that there would be times that I would need to take extra Hydrocortisone. In a normal body, anytime the body needs extra cortisol, the adrenal glands produce more instantly. This is not the case for people with Adrenal Insufficiency. At times when we need more, our bodies metabolize the Hydrocortisone faster and are left searching for more. How much extra to take and when to take it really depends on what is currently going on inside of your body. If you are having additional emotional stress, even if it’s good stress, like attending a wedding, you’ll have to take a small amount extra. If you have a stomach bug or an infection, you’ll have to double the amount that you take during the day. And if you’re puking or having surgery or get into an accident, you’ll need 100mg of Solucortef, which is the emergency Hydrocortisone. It’s very important to know what your symptoms of low coritisol are and to listen to your body.

4. “You will need to carry an Emergency Injection with you at all times!”Not only did Dr. W not tell me about Emergency Injections, when I asked her for a prescription for one, she told me I didn’t need it. Make no mistake, not having an Emergency Injection on you at all times can be deadly! I didn’t realize just how important having one at all times was until I had an Adrenal Crisis, wasn’t breathing, and ended up “dying” three times in one night. Where was my Emergency Injection? Sitting at the pharmacy because I hadn’t gotten around to picking it up. I have had a few times where I’ve gone into an Adrenal Crisis and wasn’t breathing, and after my husband injected me with the Emergency Injection, I started breathing within a minute or two. Dr. C makes sure that I can have several on hand at a time, with plenty of refills. She also advised me to inject as soon as I cannot keep my oral meds down if I am puking.

5. “You will gain weight!”Say it isn’t so! I have always been a very thin person. I could eat whatever I wanted and never had a weight problem. At my second appointment with Dr. W, I was horrified when I had gained 15 pounds. Dr. W told me not to worry about it because it was just the Hydrocortisone getting my body metabolized, and that I shouldn’t gain anymore. Now, I look back at those 15 pounds and how horrified I was, and only wish that I could go back to that weight. I kept gaining weight and had no idea why. I rarely eat sugary foods and I hadn’t changed my eating habits to support the weight gain. I saw many posts on the support groups of people who had gained weight, so I thought it was just something that happened and couldn’t be controlled. Finally, one of the Admins of one of the support groups on Facebook wrote a post about why people gain weight on steroids. Basically, she said that carbs instantly turn into insulin, so our bodies have a huge rush of insulin every time we eat carbs, and that turns into fat. Seriously? I love carbs! Give me bread and pasta and I’m a happy girl. Well, now I’m a chubby, happy girl. After doing some research, I found that following the Ketogenic way of eating was one of the only options for losing weight while on steroids. When I follow that way of eating, I do lose weight, but when I give into my carb cravings, I start gaining again. So, carbs and I had to break up.

6.“You’ll need to take a Calcium supplement and other supplements!”I have a good friend of mine that is a doctor. After I was diagnosed, he asked me how much Calcium and Vitamin D my doctor had me on. “None” was not the answer he expected. He told me the importance of taking Calcium and Vitamin D every day, because steroids rob your bones of Calcium and it can lead to Osteoporosis at a very young age. Also, because the Adrenal Glands control so many of your hormones, it’s important to have your other hormones tested to see if you need to be on any other supplements. For me, I have to take a DHEA supplement every day. I didn’t even know what DHEA was until recently. I was feeling sluggish and had to take naps during the day. Dr. C tested my DHEA levels and they were low. Now, I take a DHEA supplement every day and my energy level has improved tremendously. I also take a daily Potassium supplement, along with Magnesium and with the heat, and being a “salt waster,” I also take multiple Sodium Chloride tablets throughout the day. If you have Amazon, I’ve listed some of the supplements that I’ve personally tried and take on a daily basis. Of course, before you start taking any supplements, please consult with your Personal Care Physician or your Endo. Most likely, they’ll want to run some labs first to see how much you’ll need based on your own personal situation.

7. “The days of going to the hospital are not over!”Not only are the days of going to the hospital not over, now that you have been diagnosed with Adrenal Insufficiency, you are going to have to be very knowledgeable and become a strong advocate for yourself for when you do have to go to the hospital. I thought my hospital days were over…I was wrong. I also thought that since I finally had a diagnosis, doctors would treat me with the correct treatment plan and would finally stop treating me like my symptoms were in my head…again, I was wrong. Unfortunately, I’ve been to the hospital many times since being diagnosed. I have found that there are two types of doctors. The doctors who took an 8 hour class in med school that think they know “everything” about Adrenal Insufficiency. And the doctors who admit that they don’t know as much as I do about it and ask me how to appropriately treat me. You will quickly figure out which kind of doctor you’re dealing with, and you need to be prepared to deal with the first type. I have “fired” doctors in the hospital because they refused to listen to me and have actually caused me to go into an Adrenal Crisis, in the hospital, under their care.

8. “Be prepared for an Adrenal Crisis!”Some people with Adrenal Insufficiency can go years without having an Adrenal Crisis. Other people have several a year. Knowing the symptoms of low cortisol can be detrimental to keeping you out of an Adrenal Crisis. Knowing the signs of an Adrenal Crisis will save your life! Always make sure you have your Hydrocortisone and your Emergency Injection with you at all times. Last summer, I was camping and decided to go out on our boat without any meds. I started having low cortisol symptoms, so my husband drove the boat to shore so that I could walk back to our campsite and take my Hydrocortisone. However, I got lost while looking for the campsite. By the time I finally found it, I was already in an Adrenal Crisis, and ended up spending the next two weeks in the hospital because of the severity of the Crisis. Also, making sure you always wear a Medical Alert ID bracelet is essential and making sure your loved ones know what to do when you do go into a Crisis is crucial.

9.“You are not alone!”When I first got diagnosed with Adrenal Insufficiency, I felt very scared and alone. I had no idea that there were thousands of people, from all over the world, just like me, who were living with this disease. Once I found the online support groups on Facebook, I felt a sense of peace. Suddenly, I could find someone to talk to or ask for advice 24 hours a day. Some of my best friends now are people I’ve met online in the support groups. Although I love my friends who do not have Adrenal Insufficiency, they don’t completely understand it, so it’s nice to be able to talk to people who are living with it every day like I am.

10. “This is your new normal!”Based on what Dr. W told me, I expected my life to go back to the way I felt prior to diagnosis and prior to having symptoms. I’m a little hard headed, so I waited over a year before I finally came to the realization that this life was my new normal. I will always have Adrenal Insufficiency, I will always have to take replacement steroids to live, I will always have to be prepared for good days and bad days. The sooner you can accept this, the happier you’ll be. Just remember, you’re stronger than you think you are! You are an Adrenal Insufficiency Warrior!

 

LIST OF MY DAILY SUPPLEMENTS…. Click links to read more about them… Again…before taking ANY supplements, consult with your doctor first.

 

Pure Encapsulations – UltraMag Magnesium – Enhanced Absorption Magnesium for Cardiometabolic, Neurocognitive and Musculoskeletal Health* – 120 Capsules

Pure Encapsulations – Potassium (Citrate) – Essential Mineral for Vascular Function and Overall Health* – 180

Pure Encapsulations – DHEA (Dehydroepiandrosterone) 25 mg

Thermotabs Each Buffered Salt Tab, 3 Count

Saturday morning felt like one of the longest days of my life, and it was just getting started. My spirit had been broken and I spent the majority of the morning in tears. This was unlike me. I’m not someone who just gives up. I sat there, in my wheelchair, a box of kleenex on my lap, sobbing, looking at my schedule for the rest of the day, and I had a little heart to heart talk with myself. I could “accept” that my new reality was learning how to live life in a wheelchair…or I could fight like Hell to walk again.

Next up on the schedule was Physical Therapy. I was ready! We first worked on how we could transfer me from my wheelchair to my bed without the hoyer lift. Using a support board, I learned how to use my upper body strength to scoot myself into my bed and then back into my wheelchair. My physical therapist was impressed with how quickly I was able to catch on and how strong my arms were. I felt great! We were off to a good start. She then wanted to go into the “gym” to see what else I could accomplish. There were mats that were at wheelchair level and we practiced having me transfer onto the mat. Once again, I felt accomplished.

“Ok, now I want you to lay down. I want you to move your left leg towards me….” I took a deep breath, I closed my eyes and said a quick prayer “Please God, please give me the strength to do this!” I then opened my eyes and focused as hard as I possibly could to get my leg to move. Nothing happened. I took another breath, this time holding my head up so that I could see my leg, as if I would be able to somehow make it move with my eyes. I focused hard, I even imagined being able to kick my physical therapist with my leg…and…nothing.

The tears just started rolling down my face. I felt like such a failure. “It’s ok, honey, now let’s try your right leg.” I tried moving it but kept thinking “What’s the point?” There was no movement. I just layed there, crying. I could see a mixed look on Mike’s face. He was trying really hard to show me encouragement but when I looked deep inside of him, I could tell that he was worried that I wouldn’t ever walk again. My physical therapist tried calming me down, and had me keep trying to move my legs, as she moved them for me. She explained that she was trying to teach my brain what it was supposed to do, and that she wasn’t expecting me to be able to move my legs on my own yet. Although her explanation brought some comfort, my spirit felt completely broken.

I spent the remainder of the day trying not to cry, or at the very least, to cry only when no one was in my room. I put on a fake smile, but I felt emotionally shattered. I just wanted to go to sleep and wake up, realizing this whole thing was one big nightmare. I tried going onto social media to take my mind off of things, but seeing posts and pictures of people enjoying their warm, sunny day with their families was just short of depressing. Soccer games, fishing, out on their boats….all things I imagined was probably not going to be in my future any time soon. I looked over at my female urinal and thought “Ok, at least I have something to look forward to….being able to pee without depending on someone else.” Saturday night after Mike left, I spent a lot of time praying and crying. I felt so angry with God. I kept thinking about how this disease has turned my life upside down. Why would God spare my life and my leg just a few months ago, just to leave me paralyzed now? My prayers were pretty whiny…”Why God? Why me? What did I do to deserve this? Please give me back my legs! Please help me to be healthy!”

Sunday, I woke up to a text from my oldest son, Austin. He was coming to see me. I was so excited! Austin always has such positive advice for me and knows how to put things into perspective. Also, I just wanted a huge hug from my first baby. When he got to my room, he told me he brought me a surprise. It was Natalie, his girlfriend, and she brought me a beautiful flower arrangement that she had picked from her backyard. I knew that my day was going to be good! I had no PT or OT that day and I could just hang out with Mike, Austin and Natalie. We had a good time, laughing and talking about their Senior year in school.

We were eating dinner, and in walked Soodabeh Mokry, a friend of my Mom’s, who was an RN and a divine healer through Angels and Reiki. We had talked on Facebook but I hadn’t met her in person. She had asked if she could come visit me, but I had no idea she was coming that night. I was excited that she was there though. She had such a warm aura about her. We had an instant connection. She was everything wonderful that my Mom had told me about her and much more! We had a great conversation and she shared some insight that she had received from Angels about my health and my life. Everything she said made perfect sense. The Angels had told her that I was afraid Mike leaving me because I was paralyzed. I started to tear up. They were right….that was my biggest fear. Soodabeh reassured me that the Angels also told her that he was going to be by my side, no matter what happened.

Soodabeh told me about how she used to work at Providence and they had sent her to classes on Reiki. She asked me if I minded her using healing energy on me. I thought “Why not? What do I have to lose? If nothing else, maybe I’ll at least feel better emotionally.” Soodabeh started by placing her hands on my back. I felt a cold sensation run through my body. She then placed her hands on my adrenal glands. The cold sensation grew stronger. I didn’t really understand what was happening, but it felt comforting. She then placed her hands on my leg. All of a sudden, my feet felt really cold and extremely heavy, like tree stumps. Soodabeh sat down and asked me how I felt. I told her what I had experienced and she got really excited. I had a feeling that was a really good thing.

After Soodabeh left, Mike took me outside for a stroll. We talked about Soodabeh and I told him that my feet felt tingly and then they started feeling even heavier, like I was actually standing up. Neither one of us knew what that meant, but we figured it was probably a good sign. On our way back into the building, my left pinky toe twitched. I looked down at my feet and thought “If that toe can twitch, maybe my toes will move….” It twitched again and then my big toe twitched. I decided to try to move my toes…they moved! I started laughing and I screamed out “Mike, my toes! Look at my toes!!!!!!” He was ecstatic. He told me to try to move my right toes. They moved, too! I was on Cloud 9! I took a video and sent it to Soodabeh and everyone else that I could think of. We went back inside and I showed everyone I could find on my floor that I could move my toes. It took a lot of concentration and they barely moved, but I finally had hope!

That night, I cried. This time, tears of joy. My prayers that night were very different. Although I still prayed for God to let me walk again, I also thanked Him for the movement in my toes and for sending Soodabeh to me. I wasn’t sure when I would be able to walk again…days, weeks, years…..but I felt so incredibly certain that I would walk!

Monday morning, Taylor FaceTimed me and I told him I had a surprise for him. I turned my camera around and I started wiggling my toes. “Loooook what Mommy can do!” I think he was more excited than if I had told him I was taking him to Disney Land. He started crying and I cried with him. I knew this day was going to be good! My physical therapist walked in and I showed him how I could move my toes. I told him that I planned on walking out of this hospital this week. He laughed, like he thought I was joking. My determination and my stubbornness grew more and more. After his “You need to learn to have patience” talk with me,  he then picked up my leg and bent my foot back. “Ok, I’m going to let go of your foot and I want you to keep your foot straight…” I blinked, and then he let go…

….to be continued.

Mike arrived at the hospital with Taylor and Emilee. While Mike talked with the doctor, the kids came over to me and tried comforting me, even though it was apparent that they were the ones needing comforting. Tears running down his face, Taylor said “Mommy, you’re going to be ok! I love you so much!” I kept thinking about how lucky I was to have such brave kids. I can’t imagine what was going through their 10 and 12 year old minds, as I was unable to move or talk. I could tell that they were scared to death but they did their best to hide it so that I would not worry about them.

The tech came in and took me to imaging. They did a full body CT scan, an MRI on my brain and spine, and an X-Ray.  I was transferred to the Neurology Unit, also known as Tower 6. The Neurologist looked over my scans and came in to talk to Mike. The results were all the same…they came back “Normal.” The doctor was dumbfounded. Over the years, I have grown accustomed to hearing those words, but how could my scans show nothing was wrong with me when I was trapped inside of my own body?

Over the next few hours, I started to regain upper body movement, thanks to the steroids needed to sustain life. My legs were still paralyzed and I still couldn’t talk. I had a shooting nerve pain that went from my left leg all the way up and across my back. The best way to describe the pain was that it felt as though my leg was hooked up to an electric chair and that pain would last for at least 2 minutes at a time, and then it would start throbbing. I was in constant pain, which drained my cortisol levels. My arms and hands were extremely weak, but I was able to communicate by typing on my phone. I understood everything that was said to me, and I was able to tell my Neurologist that I couldn’t remember how to talk. I tried screaming at the top of my lungs, but my mouth wouldn’t move. I could open my mouth….I could cough…stick out my tongue….but words would not and could not come out. How was it possible that after speaking for 39 years, I could not remember how to form one word?

“Well, the good news is that you didn’t have a stroke. The bad news is that you have something called Conversion Disorder, which is basically a neurological disorder which cannot be explained by medical evaluation.” His best guess as to why I had this was that it was caused by my severe PTSD when I had my major Adrenal Crisis in February and died 3 times. The difficult part of this diagnosis was that there was truly no way to know if I would ever recover. Would this be my new life?? Am I going to be confined to a wheelchair? Will I ever be able to tell my kids that I love them again? As terrified as I was, I put on a brave face with a fake smile so that Mike, my kids and my parents knew that no matter what the outcome was, I was going to be ok. Mike and all of the kids tried to trick me into talking but it didn’t work. Austin suggested sign language but since none of the family or nursing staff knew sign language, I was left with communicating with my phone. That was becoming my new reality.

Day 4…Tuesday morning came and I woke up in severe pain, just like every morning that I had been there. My nurse came in and asked how I was doing, expecting to have a pre-written message on my phone. “Well,  Jose-Nicholas, I’m in a lot of pain. It woke me up and….oh my gosh…oh MY gosh….I’m TALKING!!!!!!! I can TALK!!!!!! My voice is back! Oh my gosh, I CAN TALK!!!!! Can you hear me?????” He laughed, with a joyous laugh and said that he did hear me but didn’t want to say anything until I recognized that I could speak.  It was a miracle! I couldn’t remember the last time I felt as happy as I did at that moment. I was so excited that I called Mike, knowing that I would be waking him up and he was expecting it to be a nurse with some bad news. When he answered the phone, I could hear the panic in his voice. “Hi babe! I can TALK!!!!!” He was ecstatic. I could feel his excitement through the phone. He told me that he would quickly get ready and come straight to the hospital. We hung up and I asked if I could be transferred to my wheelchair. I had made good friends with a couple of CNA’s and I knew that I had to tell them the good news! The nurse called my CNA and new found friend, Yajaira, who I called YaYa. She came into the room and I excitedly said “YaYa, I can TALK!” She gave me a huge hug, as though she had just won the lottery, and hooked me up to the hoyer lift to transfer me to my wheelchair. She wheeled me around the Tower 6 floor so that I could go say hi to all of the many nurses and CNA’s that knew me. Mike came in and it was time for shift change, so I had a whole new set of nurses and CNA’s to talk to. My CNA friend, Jennifer, cried when I said hello to her. Both YaYa and Jennifer had been following my blog posts and  I would send them text updates on my progress, which they shared with my other nurses and CNA’s. It was so nice to make new friends. I normally always have such nice nurses and CNA’s but to make friends with them that I knew we’d be lifetime friends was such a blessing. The one thing that we had in common was the beauty of nature. Every night, we all took pictures of the sunset and every morning, whoever was here, we would take pics of the sun rising. It was so blissful. It literally took me away from the horrible reality of the possibility of not walking again.

My Neurologist and my doctor suggested that I be transferred to the Inpatient Rahab unit. I had already had people from the Psychology team and the Physical Therapy team come and speak with me. It seemed like the best possible next step in my healing. Mike was desperate and didn’t have faith in the care plan. He went to my chiropractor’s office to speak with them. Dr. Allen was not there, so he spoke with his son. Knowing that Dr. Allen had provided miracles before, he was sure that he could get me walking again. He asked about getting me a pass to leave the inpatient rehab, not only for going to see Dr. Allen, but my stepson, Devin, as also getting married that Saturday and I very much wanted to attend, even if it was in a wheelchair. Mike conjured up a perfect plan and included my Dad in it, so that no one would know what we were doing. The only challenge that we faced was how to get me in and out of the Tahoe, along with the wheelchair that did not fold up.

I’ll be perfectly honest. Mike had more faith in me being able to walk again with Dr. Allen’ help than I did. I was so nervous that his plan would fall through that I actually tried talking him into postponing our “road trip” to see Dr. Allen. I had several emotions. The biggest one was what if Dr. Allen could not cure my paralysis? Mike was literally placing ALL of his cards on the faith that Dr. Allen could heal me. And even though I had a lot of faith in him as well, I was left with the “what if’s” of the situation. Never for a second did I not think that I would walk again. That thought never crossed my mind, even though it had crossed the minds of Mike, my family, my doctor and the care team. I was scared to death of Mike placing all of his hope on Dr. Allen to heal me, and so many thoughts crossed my mind about what would happen if he wasn’t successful. A few months back, he jokingly told me that if I was ever confined to a wheelchair, he would leave me. Naturally, those thoughts raced through my mind. Am I going to lose my husband, my best friend, the only person on earth that I 100% feel connected to, along with my stepkids, especially Emilee, whom I love just the same as my kids I gave birth to? My cortisol levels dropped as I was in panic mode. I had to ask the nurse for extra Hydrocortisone, since a normal person’s body would just produce more cortisol in this situation, but mine was depleting quickly.

I was so torn in this situation. I knew that Dr. Allen had performed miracles for me before, but what if he couldn’t this time? How would Mike react? He was placing ALL of his belief in him and I was nervous. I spent hours upon hours thinking about it. I knew that I was about to be transferred to Inpatient Rehab and although I didn’t have high hopes of it working, I felt more comfortable with that failing than I did with the idea of Dr. Allen failing. My only concern at that moment was the emotional well being of Mike. I made very excuse I could think of to talk him out of “breaking me out” of there. Even if there was a1% chance of him not being able to fully help me, I didn’t want to risk Mike’s spirit. I was in a Catch 22. I desperately wanted to walk again, but I was afraid that if Dr. Allen could not cure me, Mike would lose his spirit, which drove my ambition.

On Saturday, I was handed my daily schedule. It showed my eating times and more importantly, it showed when I had PT and OT. I was nervous, to say the least. I knew that this was going to be an uphill battle. I felt ready, but at the same time, I felt incredibly scared to death. My first few sessions for the day were just evaluations, so I took comfort in knowing that I wouldn’t have to push hard. The first Physical Therapist came into my room and introduced himself to me. His name was Aaron. He was kind and gentle. We started talking about football because of my Steelers blanket and the Steelers shirt I was wearing. He was not a football fan, or a sports fan in any way, but we were able to joke about it and laugh.

Aaron then started talking about the goals for me for PT. I sat up straight and was ready to get down to business. He said that PT’s goals for me were to be able to go home with the ability to go to the bathroom by myself and to get dressed by myself. I sat there, waiting for more to come out of his mouth. Nothing came. I said “Okayyyy….I thought that the goal was for me to walk again…..” He looked at me, tilted his head as if he was saying “Oh sweetie, you’re so cute for thinking that way…” and said “Well, we are hoping for the best, but preparing for the worst. My job is to get you to be able to function at home with the tools that we can provide to you.” I felt a shock come over my body. I thought the whole reason I was in the inpatient rehab was for them to get me to walk again. Never once did I ever consider, for one second ,that I would never walk again. My heart started racing and I instantly felt a really hot feeling flowing throughout my body. So many thoughts ran through my mind in an instant. I was scared that Mike wouldn’t want to be with me if I was confined to a wheelchair. I thought about how embarrassed the kids would be when I showed up at their school, unable to walk. I wouldn’t be able to go on our boat or be able to fish like I had been able to. We had just bought a Tahoe so that we could have room for all of the kids so that we could go camping and take trips. My hopes and dreams were floating in front of my eyes.

I started crying and said “I thought that the goal was for me to walk again…” Aaron looked at me, head tilted, once again, and said “Sweetie, like I said, right now we are hoping for the best but preparing for the worst. I’ll be honest….there is a very high chance that you will never walk again…..” I was speechless. Tears started running down my face.  No words came out of my mouth. All I could do at that very moment was blink twice….for NO!

….to be continued.

 

 

 

“Jennifer, I want you to blink once for Yes, twice for No!” Tears were streaming down my face. As I laid there on the hardwood floor in the entry way of my house, I looked around. Taylor was holding my hand, telling me how strong I was. Emilee was standing behind him, trying to comfort him and also telling me that I was going to be alright. Mike was talking with the first responders, telling them what had happened. There were two first responders trying to find a vein to do an IV. Why couldn’t I speak? Why couldn’t I move my body? The EMT next to me told me that I had gone into Adrenal Crisis, fainted and that they were trying to help me. He asked me if I could understand what he was saying and told me to blink once for Yes, twice for No.

I was completely paralyzed. The EMT said he was going to do an IO (Intraosseous infusion) so that they could give me medications because my blood pressure was dangerously high. I tried telling him no. I was screaming but nothing came out. My heart was racing. The last time they did an IO, I ended up with Compartment Syndrome, an Emergency Fasciotomy Surgery, where they almost amputated my leg, and went into Cardiac Arrest 3 times. I didn’t want to die. I have things to do and people that need me to stay alive. I quickly looked over at Mike, tears flooding my eyes, the look of terror on my face. “Please don’t let them kill me, Mike! Please say something!” Mike told him that unless I would die on the way to the hospital, they absolutely could not drill an IO into my knee. They loaded me into the ambulance. I could see Taylor out of the corner of my eye, as they were desperately trying to get an IV site going. All I could think about was how scared he must be. He knew that the last time he saw me in an ambulance, my spirit had left my body and tried telling Mike goodbye.

They got an IV going and we headed towards the hospital. They injected me with the steroid that was needed to pull me out of the Adrenal Crisis. My blood pressure started going down and suddenly I could feel my left hand. I squeezed the hand of the EMT who was sitting next to me, holding my hand. “We have movement,” he said excitedly. He gave me another shot of steroids, and then started asking me yes or no questions about how to save my life; we communicated with me blinking.

We arrived at the hospital and I was taken to a trauma room. Suddenly, I had several nurses and a doctor surrounding me. They kept asking me questions and I desperately tried moving my mouth, with no success. I knew they had to talk to the EMT in order to know how to communicate with me, so I blinked rapidly and looked over at him in the hallway, then blinked rapidly again. They looked confused. I did it again. “You want him?” a nurse asked me. I blinked once. He came over and held my hand, telling the doctor and nurses how to communicate with me. The EMT did his best at telling the doctor what had happened. I squeezed his hand when he got some of the information wrong and he was able to talk to me and ask me questions until he got the information I was trying to say right. The doctor tried asking me questions but he kept getting confused, and even laughed when he couldn’t understand what I was trying to say. The EMT then told me that he had to go and that I was in good hands. I started crying. He couldn’t leave! I blinked twice and squeezed his hand as hard as I could. He was the only one who truly knew how to communicate with me. He was my voice. He let me know that he knew that I was scared but that my husband was on his way and he promised me that he would make sure that he could come into the trauma room to be with me. I blinked once and he knew that I felt ok with that. He told me how brave I was and that he was glad that he met me. He said that he knew that I was going to be ok and that he hoped to be able to see me when I got better so that I could say hello to him. I squeezed his hand and blinked once, and then he left.

The doctor then came over to me and started talking. I was not prepared for what he was about to say. “Jennifer, you had an Adrenal Crisis. You passed out and hit your head. Right now, you are paralyzed. I have to send you to get some images done because I think you had a stroke……do you understand? Blink once for yes, twice for no….”

……to be continued.

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, prior 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!”

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…”