The Dream....

Have you ever heard of a sleep disorder called, "Sleep Paralysis?" It is a condition characterized by temporary paralysis of the body shortly after waking up. Sleep paralysis occurs when the brain awakes from a REM state, but the body paralysis persists. This leaves the person fully aware, but unable to move. There are several possible causes for sleep paralysis including irregular sleep schedules, sleep deprivation and experiencing highly stressful situations.

The first time I experienced this was when Bud was dying. For those of who you don't know Bud, he was my father-in-law. Rod's mom passed away in December of 2003. Her name was Hetty Jane. She was hands-down the most loving woman I have every known. Rod's dad was then diagnosed with pancreatic cancer in June of 2005. He fought a hard, hard battle and passed away in July of 2006. He moved up from Lincoln and lived with us while he received treatment at UNMC and until he passed away. I experienced my first "bout" of "Sleep Paralysis" during the end of his battle. One afternoon I laid down for a much needed nap. When I awoke, I discovered that I was unable to move a muscle. My eyes were open and I could see. I could also hear, but I couldn't move a finger, a toe or even speak. I was alone in the house and was scared to death that I was dying or dead. Eventually, after what seemed like hours, that was actually closer to just a few minutes, I was able to move again. It was one of the scariest experiences in my life. I was wide awake but was unable to move a muscle. I called Rod who contacted a doc in the sleep disorder clinic. We soon found out what happened. I was told to try to have a very regular sleep schedule, including a daily nap. I was also told if it happened again, to just try to relax and remind myself that it will go away. Well, it did happen again, actually 3 more times during Bud's last few weeks. But each "bout" was shorter and was not anywhere near as scary, since I understood what was going on.

When I had to go into the hospital last month, I was admitted on Monday, May 7th and I was discharged on Sunday, May 13th (Mother's Day). Saturday had been a rough day in terms of steroid side effects(steroid storms). I am still very grateful that my doctor listened to me when I asked to stay one more night. After a full day of "riding the storm" I was exhausted but still too wired to fall peacefully asleep. When I finally did get to sleep the night was filled with dreams of diseases, monsters, flying dogs that looked like Charlie (our 135 pound yellow lab!) and even some visits with relatives (both alive and dead). These dreams somehow morphed into a dream showing me in my hospital bed. I was hooked up to the heart monitor, just like I was in real life. But, in my dream, the steroids stopped working. When the steroids stopped working, the stress made my pulmonary hypertension worse. Then the Flolan (the medicine I get 24/7 via a central line in my chest) stopped working. I was going into a physical downward spiral. The nurses were talking about that "sometimes these things happen. We do the best we can but we can only do so much." Then I saw a newspaper article that was written about my passing. It commented on how I had gone into the hospital with some serious problems with an unknown cause. By the time the doctors were able to diagnose the adrenal problem, it was too late. My body just couldn't handle both the adrenal insufficiency and the pulmonary hypertension. In my dream, the heart monitor started slowing down, beeping slower and slower and slower and then it stopped. Then, I woke up. But, when I woke up and opened my eyes, I found that I was unable to move. At first I thought I was having another episode of "sleep paralysis). But, every time I closed my eyes, I saw a bright light. I had no idea at this point if the light was a light in the room or if it was "THE light from God." I closed my eyes and prayed to God that if it was my time to go that I was ready. I really didn't want to leave, but I knew that He knew what was best. When I opened my eyes, I could see around the room, so I wasn't sure if I was experiencing the "REAL light or not." I closed my eyes and again asked God to help me understand what was going on. Then my body started to tingle and become numb. It didn't happen all at once. It felt like it was happening in cm squares, starting at my toes and working it's way slowly up my body. I decided that I must indeed be dying. I tried to call out to a nurse for help, but I could not speak or make any kind of noise. The numbness continued to work slowly up my body. I continued to close my eyes asking God to please give me guidance. I told him that I was surprised it was taking so long to die. I expected it to be a quicker process. Every time I closed my eyes to talk to God, I saw a bright light. I was not really afraid. Ever since I was diagnosed with PH in June of 2004, I decided that I needed to work on my relationship with God. Over the last couple of years, I had become a bit angry with God. Losing Rod's mom, our company going bankrupt, getting diagnosed and then having Rod's dad being diagnosed with pancreatic cancer had managed to push my faith to the edge. I have been working on building a loving relationship with God and, at this point, my faith had strengthened considerably and I had no fear of dying. I knew my boys and my husband and friends would be sad. But, I also knew they were strong. As the tingling and numbness of my body continued to progress, I could hear nurses in the hallway. I decided that maybe I wasn't really suppose to die. That maybe it was going so slowly so that someone could come in and get my heart going again. Remember, I had already dreamed that I had flat-lined. "Waking up" being unable to move just seemed to reinforce that dream as a reality. Anyway, when I heard the voices of the nurses, I tried to call out again. The sound that came out of my mouth was a pitiful, very quiet moan. I wanted it to be louder so they would hear me and save me. But, if this was suppose to be my time to die, I didn't want to disagree with God as to what His plan was for me. I closed my eyes to pray again and this time there was no white light. Ok, that was it! I was going to put every bit of strength I had into screaming for help. I let out another moan, this time it was louder. I tried again. This time not only was it louder, but the numbness was starting to go away in my fingers. One more louder moan did get the attention of one of the nurses aids. She came in and I tried to tell her to please help me, but of course, she couldn't understand me. She went and got my nurse. By the time she got into my room, I had lost most of the numbness in my hands and arms. I was able to move my mouth more and my voice was getting stronger. I "yelled" that I had died! That I had really died! I couldn't move, I couldn't call for help! I couldn't feel my heart beating and I was not needing to breath except for small little breaths. She tried to calm me down and told me that I hadn't died. She reminded me that I was still hooked up to the heart monitor and the pulse oximeter and if I would have had any problems at all, alarms would have gone off and someone would have been in right away to help me. I was in such a state, I was worried that I had actually died and that I was in some holding zone for heaven. In fact, the room looked totally different than what I remembered it looked like before I went to sleep. Even the bed seemed like it was different. All that did was reinforce my fear that I had died. This poor nurse, I was close to hysterical. I told her I need to talk to my family. Would she please call my family. She said that it was so early in the morning that she hated to wake them up. But, if I knew their phone numbers, she would help me make a call. In retrospect I realize that she was trying to see how coherent I was. I knew Rod's number and Nick's number and she helped my call each of them. I told each of them that I had died. I gave them a very, very short version of what I had been through. They each tried to console and calm me telling me that I had not died. They also told me that it sounded like I had another sleep paralysis episode and that along with the help of the steroids I had become very confused. Talking to them calmed me down and I then talked to my nurse about sleep paralysis. She went and spoke to the doctor on call and came back to tell me that they went through the cardiac data collected while I was asleep. They both agreed that between the stress, the steroids and the lack of sleep that I had another sleep paralysis episode and experienced a doozy of a nightmare.

After talking to Rod, Nick, my nurse and the on-call doc I felt very convinced that I had not died. Although, I'm also convinced that my conversations with God were real. If there had ever been a time that I need my Heavenly Father for support and comfort, the night I just had would have been it.

I got out of bed and felt very, very good. I asked my nurse to help unhook me and hook me up to portable equipment so I could have a little quiet alone time. I walked all around the floor. I stopped and looked at pictures and photos and magazines sitting around at various little "rest areas." I wanted to go down to the chapel, but the cardiac wires wouldn't let me off the floor. That was ok. Everyone else on the floor was fast asleep so I had plenty of time to have a conversation with God. When I turned the corner of one of the halls, I discovered that the floor I was on was also the ICU. There was a waiting room for families, and there were families in there crying and hugging and supporting each other. I stopped in my tracks and thanked God for showing me that even though I had just had the scariest experience of my life, that it was nothing compared to what so many people were going through. I thanked God for helping me get through my nightmare. By the time I got back to my room, I felt like a million bucks! I called the kitchen and ordered some breakfast and knew that I was ready to go home.

I tell people that during my last evening in the hospital, I was rebooted. I have no other way to explain what happened to me that previous day, evening and morning. Since then, I have not questioned anything that happened to me during my last evening in the hospital. I firmly believe between the medicine, the sleep, the sleep paralysis and the support and love of God, I have been "rebooted."

I am not trying to convince you that something miraculous happened to me while I was in the hospital. I’m certainly not asking you to believe that what I experienced was anything other than a bad dream. What I am asking you is to keep your mind open, your heart open and your arms open so if an opportunity comes along for you to be “rebooted” whether it’s physically, emotionally, intellectually or spiritually, you’ll be ready.

Thank you for taking time to read this post. Thank you for your continued support. Thank you for letting me share my steroid story. My hope is that none of you will have to experience an adrenal crisis, a loss of your pituitary and/or the need to be hit hard with massive doses of steroids. But, if you do maybe my story will help.

Much love
Annette