It began in January 2010-- the New Years resolution was kicking in. My resolution was to get in shape for summer-- every girls resolution, right? So I started out by getting involved with the "Biggest Loser" contest at work. It was 2 classes per week and each class was high-intensity aerobic workouts with circuit training. This contest only went for 8 weeks. I lost quite a bit of weight in that 8 weeks and now I was in the mode to get some muscle tone. So I set up personal training sessions to meet 3 times a week. I was doing aerobic workouts and weight training. My personal trainer's philosophy was to push, push, push until you just can't go anymore. I had a goal and I wanted to achieve it so I kept on pushing.
It was mid-March 2010 and I had just started a new job; I became a Building Manager for a sports complex in Wisconsin Dells, WI. It was Saturday morning at the dome and in fled all of the volleyball players and their parents. As the day progressed, I started to feel light tingling in my hands and feet. The first thing that came to mind was that I had worked out a bit too hard the day before; no big deal. I went home that night and didn't have a care in the world to go out with friends. I went to sleep at 8:30 that night and didn't wake up until 11am Sunday morning. When I got out of bed I felt very weak, but I went on with the day. The tingling was getting progressively worse, so I asked my mom to sit on my feet. I was trying to find any way to get that feeling to go away. My hands were slightly tingling, but nothing that annoyed me like my feet. I also had a personal training session Sunday night, so I planned on telling my trainer that I would be taking it easy that night. I started my workout and after about 20 minutes, I couldn't balance at all and my arms were very weak. I ended up leaving early and told my trainer I would make it up within the next week.
Monday morning, March 22, 2010, I woke up and realized when I got out of bed, my legs were very weak. I became very frustrated and wondered what was going on. I started the water to my shower-- I always test the water before I get in. The water was cool to me so I turned it up until it felt hot. When I got in the shower, I had scalded my skin; realizing my hands no longer had feeling. Once I came out of being in shock from the scalding hot water, I noticed washing my hair was quite a task-- my arms were barely working. I began to cry, feeling as though my body was ruined by my personal trainer. So I slowly got ready for work and went on with my day. As I was walking into the office I got a feeling as if I had club feet. I ignored it as if I was in denial. I sat down at my desk and started my day. My co-worker had handed me a piece of paper, in which I dropped because I could not grab it. I tried multiple times and nothing was working. My co-worker said I needed to goto the ER to get checked out. My hands and feet should not have been going numb.
I drove myself to the local hospital, where my mom met me. They ran blood tests right away and put my on an IV drip. The ER doctor came into my room only to tell me I had major muscle damage (myositis) and that it would 'just take time to heal'. The ER doctor scheduled a follow-up appointment for me the next day, Tuesday, March 23, 2010, and said I was not allowed to go back to work for the rest of the week.
I woke up Tuesday morning, March 23, 2010, only to realize that I had no feeling up to my knees and my arms were indefinitely 'gone'. My appointment wasn't until 1pm and I did not want to wait that long. I got up and called my mom in tears. I wasn't able to drive myself to the hospital, so our dear family friend came and picked me up. I was re-admitted to the ER at the same hospital, blood tests were being taken, and the doctor came in with the results. "Unfortunately, Emily, your muscles have been overworked and you will just have to rest. This could take some time to heal. Here is a prescription for Vicodin. Please go to your appointment at 1pm." It was very hard for me to believe that this was the only thing wrong with me, but what do I know? This is why we have doctors. 1pm rolled around and I went to my appointment. At this point in the day, I only had minimal reflexes-- the human body has 4: spinal, cranial, somatic, and autonomic. My leg didn't fly up when my knee was tapped, my wrist didn't bounce when my elbow was tapped, & my leg didn't jerk when my achilles tendon was touched. Interesting, huh? When the doctor asked me to stand on 1 leg, and look up, I nearly fell over. He asked me to do a pushup against the door, I collapsed. This doctor (doctor #3) was baffled because the arms and the legs should never be numb at the same time, especially just dealing with muscle damage. After asking me to do this and that, he wound up telling me that he scheduled me 14 more blood tests on Wednesday (the next day) and an MRI on Thursday. I basically rolled my eyes and waddled back to the car.
That night, (we're still on Tuesday 3/23/10) I had a craving for one of my favorite restaurants. By the time my mom picked it up and put it on the table, I had lost my appetite and wanted to goto sleep. At 10pm Tuesday night, my dad came over to the couch and said "Emily, you need to wake up and move around. We need to see if you're getting worse." I went to sit up and no longer could move on my own. He slowly helped me to the floor where I laid flat on my stomach. It was at that point that my parents looked at one another and said, "Let's get her to Madison." (A well-known hospital in the State of WI)
My mom walked in her bedroom to get ready to leave only to find something meaningful--- meaningful, yet disturbing at the same time. Above my parent's bed is a crucifix. (We are a Catholic family) The bed is about 3 inches from the wall. The crucifix had fallen off of the wall and landed in between their 2 pillows. My mom witnessed this and yelled, "Noooo!" It was clearly a sign that they had something ahead and that Jesus will be there to help. She continued to get ready and off we went.
We arrived at the ER in Madison where I was admitted at roughly 11:30pm (Tuesday 3/23/10). They immediately did a spinal tap and had me diagnosed with Guillain Barre Syndrome that night. And the nightmare began...
I was admitted to the Neurology general care floor where I was receiving excellent care. I started physical therapy right away and by day 2 was doing somewhat better. I was receiving IVIG treatment and got to experience the EMG (electromyography) test. (I don't wish this upon my worst enemy) The EMG test consisted of testing the electrical activity of the muscles. It is also performed with another test that measures the conducting function of the nerves. Having both of these done at once is very painful because Guillain Barre Syndrome is an auto-immune disorder that destroys the nerves. Some cases are worse than others, however, damaged nerves are not pleasant to deal with. After receving a few rounds of IVIG, I was starting to go downhill. I had collapsed in the middle of the night on my way to the bathroom; thank God I had a male nurse because he had caught me before I hit the floor. I was starting to have trouble talking and my breathing was getting harder and harder. I felt as though a truck was sitting on my chest. Before long, I no longer had feeling in my face, I could not smile, and my speech was very hard to understand. My body was shutting down. I had explained to my doctor's and nurses that I have asthma and I just needed my inhaler. The doctor talked to me in such a calm manner and stated, "Emily, at this point we believe that your inhaler won't help. Guillain Barre tends to creep into your respiratory system and when that happens, we need to give you a breathing tube." At this point I was desperate for help and gave in. At that point, they moved me into the Neuro-ICU where I was placed into an induced coma and given a breathing tube. The last thing I remember is seeing my mom crying and my doctor's arms around my mom. I just prayed I was going to make it and I prayed that God helped my parents along the way.
I woke up one day with my mom and dad in the room with me. I tried to move and nothing happened. At this point, I was 100% paralyzed, was receiving a plasmapheresis treatment through a port that was inserted in my clavical area, I was being fed through a g-tube that was inserted in to my stomach, and had gotten a tracheostomy done. I couldn't believe what I woke up to. My dad leaned over me and asked, "Emily, how long do you think you've been here?" I spelled out on the letter board, 2 days. My dad lightly replied, "You've been sleeping for 3 weeks." I started to cry. God left me with 2 ways of communication-- blinking and nodding yes and no. Other than that I had a color-coded alphabet board for communication. The nursing staff placed a call button behind my head if I needed assistance in my room. At this point, I was experiencing major depression. I didn't see light at the end of the tunnel. I had never experienced anything like this ever before in my life. I thought I was near death.
Since I was on such a high dosage of drug therapies, the "demons" started to seep through. I had started experiencing something I would have never thought would happen... anxiety attacks and hallucinations. Each morning I would usually wake up at the same time... right around 6:30am. I've never been a morning person, but one of my main axiety issues was knowing I was losing my night nurse and changing over to the day nurse. For some odd reason, I was so fearful of something happening in my room while the nurses were giving report from 7-7:30am. I made sure to be awake at 6:30am so that my night nurse could come in and check everything and turn me. Then from 7-7:30 I would lay there with bug eyes; praying something wouldn't happen. Why I had a fear that something would happen, i'll never know. Oh wait, it's because I was helpless and didn't believe the alarm would go off on the ventilator if an error occured. So there I layed, waiting for the nurses to finish up, and if my day nurse didn't come in my room when they were done, i'd freak out and hit my call button multiple times. By the way, I knew exactly when nurses were done with report because I ALWAYS had my head turned toward the door. I never wanted my tv on or music playing-- I just wanted to look out my door. I was such a watcher, I knew who was coming down the hall by the sound of their shoes... i'll be proud of that the rest of my life.
Another anxiety issue I dealt with was getting bathed. There were only certain nurses that knew EXACTLY how to handle me. As crazy as it sounds, lifting an arm the wrong way, putting a fingertip on my calves, or accidentally knocking my vent tubes sent me to the ceiling and i'd cry for awhile. It didn't take much to ruin the moment. One morning I had 2 "students" come in my room with the bucket (to wash my hair in) and soap. I knew what they were about to do and I wasn't havin' it. So I hit my call button multiple times. My main nurse wasn't showing up, so I was shaking my head to get another nurses' attention that was standing by my door. She came in and I spelled out, "I want you to give me a bath, not them". She chuckled and said "no problem, Emily". So she told the students to leave. Talk about being the boss! Yikes...
Another issue-- the ventilator. As I mentioned before, I always thought if something happens, the alarm won't go off to get the nurses attention. In my opinion (at the time of being a GBS patient and NOT now) the night nurses didn't pay as close attention to me. Because my pain was so intense, I had to be turned about every 15-20 minutes. Everytime i'm turned, the call button needed to be switched to the opposite side of my pillow. Well guess what-- the call button was on the table next to me and not behind my head. The anxiety kicked in. 'What if I need help? I can't scream, I can't move...' I hope you're read for this... I shook my head back and forth as hard as I could to make my neck muscles and pressure pop the ventilator cuff off so that the alarm would go off. Once the ventilator alarm went off, the nurses would come in. I had this all planned out and it worked. I think my heartrate went up to about 300, but I got my call light back. Would I have needed that call light before the nurse came back in? Probably not. But when you're helpless, you want anything to help you out. The call light was the ONLY freedom I was given.
Ok, let's move on to hallucinations...
As I mentioned before, the nurse would come in when I woke up to do the normal routine and then go out for report. Each morning I had a companion join me. From the mirror that sat on the wall in my room came out a male human being-- one arm and one leg at a time. EVERYDAY! I never once saw this gentleman's face, but he came out of the mirror every morning. The HUC that worked the desk at night would occasionally walk past my room. Everytime I saw him I always wondered why he had a tattoo above his ear. Because I never had glasses on, I never saw what the tattoo was. One night, a night nurse came in my room to turn me and started talking about how we played in the same softball league. I thought that was incredibly cool. Another night, I went to a restaurant with my parents and got up in the middle of dinner to goto the bathroom. While I was going to the bathroom, I realized I had to go back to the hospital to get put back on the vent because I lost my breathing. There I lay in the bed and told the nurse, she couldn't help me until I took off my jeans and my Nike's. Confused yet?? Let me explain....
The man coming out of my mirror is something I will never be able to explain. Just another hallucination we'll never know about. (Thanks to the drugs!) The HUC never had a tattoo-- it was a pencil that he always had behind his ear. The nurse that played on my softball team laughed the day I asked her what position she played-- we never had that conversation. She said she's never stepped foot on a softball field. I went out to dinner with my parents? Not a chance. I had a dream I went out to dinner with them and then I slowly started to come out of the deep sleep (from being drugged) and my nurse was in my room changing my catheter. She told me she had to move me and that's when I slipped back into my dream thinking I was in normal clothes at dinner. Hence, 'Not to help me until I took off my jeans and Nike's'.
I went through some weird stages, too. For a few days I went through, what felt like, hard plastic dug into the roof and bottom of my mouth. I was constantly moving my tongue around to get it out, but nothing seemed to work. Whenever my parents were there (everyday) I'd tell them to suction out my mouth to get the broken pieces out. There was never any pieces in my mouth. Again, i'll never know what caused that to give me such a feeling. Let's talk about how I turned into an amphibean for a few days. My hands were shedding skin like I was an iguana. My mom, the nurses, and even one of the medical students that loved me would lotion them up multiple times a day and nothing seemed to help. After a few days they went back to normal. Reason: Unknown. Here's a good one: One morning I was getting a chunky sensation at the back of my throat. Almost as if I was throwing up and it was sticking to my throat-- except I couldn't vomit because I was on the ventilator. So I asked my nurse to call respiratory therapy. They came in, deflated the balloon that allowed me to breathe, re-inflated it, and left. Not 2 minutes later it started up again. So I called the nurse back in, the nurse got respiratory therapy and they were baffled. They could not figure out what was wrong. Before long, my doctor entered the room. (He usually didn't come to see me at this hour, so I knew the issue needed attention) He fooled around for a bit and all of a sudden goes, "Are you kidding me?" Next thing I knew, I had woken up and 2 hours had gone by. There was a hole in the balloon which was causing air to get out and go back up and out of my mouth instead of filling my lungs. That was the sensation I was getting-- air bubbles. They did an emergency surgery to put another balloon in, in which they put me out for. When my mom showed up later that day, she saw the emergency kit laying on the floor. Ooops! The staff blew that one... and the explanation had to come out. Oh well, at least they saved me.
I could write for days about the intense therapy sessions I went through, so i'll try and sum things up. As I mentioned above, physical therapy started the day I was admitted. Not only was it physical therapy, but occupational therapy, too. And it doesn't stop there! It became a joke in our family because there was a "team" for everything. One day the swallow team showed up when my speech started to slur-- Yes, there is a such thing as the swallow team; they test with different foods and liquids and stick cameras through your nose and down your throat to watch how everything is working. Quite interesting, might I add. When the paralysis really started to take over my entire body, I experienced major pain. It really wasn't until I was placed into an induced coma, when they put me on strong drug therapies. (That's a whole story in itself) So as I started to get more and more pain, I was begging for something stronger. Low and behold, the pain team showed up! So up to this point, i've got physical and occupational therapy, speech therapy, the swallow team, and now the pain team. Later, when I came out of the 3 week coma, I felt as though I was going deaf. My sister was visiting at the time and I spelled out to her that I couldn't hear anyone. Her reaction: "Oh no! GBS takes hearing too??" So they called the nurse in and she said she'd get a doctor there immediately. Are you ready for the outcome? The Q-tip team showed up. Just kidding. But the on-call doctor came to my room and said they've never known GBS to paralyze the ear drum so he cleaned out my ears and ta da! I could hear again. I guess because I had been laying for so long and getting my hair washed with a bucket under my head, build-up had occurred. Phew!
Oh, I forgot to mention the "office team" that showed up. There was a man that came into my room one day; I remember this like it was yesterday. I remember this guy to be very good-looking and I didn't know who he was because he didn't have a white coat on. (Doctors wear the white coats for all of you who didn't understad that) At this point, I was in the ICU, falling asleep every 10 minutes, and was VERY irritable. The last thing I wanted to do was to answer more questions. So this man sat beside my bed and was talking to me about power of attorney stuff. I say "stuff" because I had no idea what he was talking about-- I was COMPLETELY drugged up. I felt like him and I were floating on clouds talking about nothing. Seriously. The main part of that day I clearly remember is how rediculous I thought this guy was for making me REPEAT A SENTENCE THREE TIMES! (Because it was supposedly VERY important and he wanted to make sure I was giving him correct information) Hold up... I'm on the ventilator and can't talk. I'm also going in and out... barely keeping my eyes open. And you want me to repeat stuff I don't even really understand??? So I spelled it out on the letter board THREE TIMES. What a day. I tried explaining this to my parents when they arrived later that night. My mom said, "You did what? Who was in here? I'll go talk to the nurse." Here's the kicker: To this day, NO ONE knows who came in my room that day. There is NO record ANYWHERE that a guy came in my room and talked to me about power of attorney "stuff". That's always a good laugh to have. Wow. One will never know.
Needless to say, I had so many people that came to my room to help me. My room was a constant revolving door. And I want to thank all of you for helping me in so many different ways. I couldn't have done it all without you.
As time went on, I started to see the "light at the end of the tunnel"--which I never thought I would. The sad thing about being a GBS patient is how bad the minds games are and how deeply depressed it makes you. I should really just be speaking for myself. I cried day after day just about every 6 hours. It wasn't because of the people around me, but simply the depression that my mind had fallen in to. I didn't care that everyone who walked in my room told me I was going to get better. When I thought about what I looked like, I cried. Imagine being trapped in your own skin-- not being able to move, but having your mind run a mile a minute. What if I had an itch you ask? I didn't... my nerves were damaged so I didn't have any nerve impulse to tell me I had a twisted hair on my arm. Itching and sneezing didn't occur. If I would have had an itch, perhaps I would have felt a little bit better about myself... but I had nothing. Well, I take that back-- I could blink and nod my head yes and no after I came out of the coma. I don't even want to think what I would have been like if I didn't have my neck movement. Thank goodness for that. However, the days got old very quickly when I had "nothing going on". A dear friend of mine and my family's brought a book of DVD's for me to watch. One afternoon my nurse asked if I wanted to watch a movie, I thought, eh what the heck, so she turned on "I Now Pronounce You Chuck & Larry". Who would have thought a movie like that would have upset me?? Well, here goes the crazy psychological demon I battled daily-- Watching a movie or tv, going outside or anywhere other than my room would make me cry. Why? Because it reminded me of home. Everyone else (in the movie or walking around) is enjoying their lives and getting around. I couldn't. It was a ferocious demon, let me tell you. One night my mom turned on American Idol before they left. At first I was ok with it, until the contestant started to sing "I Believe I Can Fly" by R. Kelly. Not only is that song one of my absolute favorites, but again, the words describe getting away, being an inspiration, and enjoying life. I was taken away from that. I was put on depression meds to help me get through it, but they didn't do the trick. The Doctors didn't want me to be on too high of a dosage simply because they didn't want the depression meds to overtake the nerve pain meds. Sometimes drugs cancel out others so my drug therapy was VERY important. Who would have thought there's a drug therapy specialist? You'd be surprised.
It was mid-March 2010 and I had just started a new job; I became a Building Manager for a sports complex in Wisconsin Dells, WI. It was Saturday morning at the dome and in fled all of the volleyball players and their parents. As the day progressed, I started to feel light tingling in my hands and feet. The first thing that came to mind was that I had worked out a bit too hard the day before; no big deal. I went home that night and didn't have a care in the world to go out with friends. I went to sleep at 8:30 that night and didn't wake up until 11am Sunday morning. When I got out of bed I felt very weak, but I went on with the day. The tingling was getting progressively worse, so I asked my mom to sit on my feet. I was trying to find any way to get that feeling to go away. My hands were slightly tingling, but nothing that annoyed me like my feet. I also had a personal training session Sunday night, so I planned on telling my trainer that I would be taking it easy that night. I started my workout and after about 20 minutes, I couldn't balance at all and my arms were very weak. I ended up leaving early and told my trainer I would make it up within the next week.
Monday morning, March 22, 2010, I woke up and realized when I got out of bed, my legs were very weak. I became very frustrated and wondered what was going on. I started the water to my shower-- I always test the water before I get in. The water was cool to me so I turned it up until it felt hot. When I got in the shower, I had scalded my skin; realizing my hands no longer had feeling. Once I came out of being in shock from the scalding hot water, I noticed washing my hair was quite a task-- my arms were barely working. I began to cry, feeling as though my body was ruined by my personal trainer. So I slowly got ready for work and went on with my day. As I was walking into the office I got a feeling as if I had club feet. I ignored it as if I was in denial. I sat down at my desk and started my day. My co-worker had handed me a piece of paper, in which I dropped because I could not grab it. I tried multiple times and nothing was working. My co-worker said I needed to goto the ER to get checked out. My hands and feet should not have been going numb.
I drove myself to the local hospital, where my mom met me. They ran blood tests right away and put my on an IV drip. The ER doctor came into my room only to tell me I had major muscle damage (myositis) and that it would 'just take time to heal'. The ER doctor scheduled a follow-up appointment for me the next day, Tuesday, March 23, 2010, and said I was not allowed to go back to work for the rest of the week.
I woke up Tuesday morning, March 23, 2010, only to realize that I had no feeling up to my knees and my arms were indefinitely 'gone'. My appointment wasn't until 1pm and I did not want to wait that long. I got up and called my mom in tears. I wasn't able to drive myself to the hospital, so our dear family friend came and picked me up. I was re-admitted to the ER at the same hospital, blood tests were being taken, and the doctor came in with the results. "Unfortunately, Emily, your muscles have been overworked and you will just have to rest. This could take some time to heal. Here is a prescription for Vicodin. Please go to your appointment at 1pm." It was very hard for me to believe that this was the only thing wrong with me, but what do I know? This is why we have doctors. 1pm rolled around and I went to my appointment. At this point in the day, I only had minimal reflexes-- the human body has 4: spinal, cranial, somatic, and autonomic. My leg didn't fly up when my knee was tapped, my wrist didn't bounce when my elbow was tapped, & my leg didn't jerk when my achilles tendon was touched. Interesting, huh? When the doctor asked me to stand on 1 leg, and look up, I nearly fell over. He asked me to do a pushup against the door, I collapsed. This doctor (doctor #3) was baffled because the arms and the legs should never be numb at the same time, especially just dealing with muscle damage. After asking me to do this and that, he wound up telling me that he scheduled me 14 more blood tests on Wednesday (the next day) and an MRI on Thursday. I basically rolled my eyes and waddled back to the car.
That night, (we're still on Tuesday 3/23/10) I had a craving for one of my favorite restaurants. By the time my mom picked it up and put it on the table, I had lost my appetite and wanted to goto sleep. At 10pm Tuesday night, my dad came over to the couch and said "Emily, you need to wake up and move around. We need to see if you're getting worse." I went to sit up and no longer could move on my own. He slowly helped me to the floor where I laid flat on my stomach. It was at that point that my parents looked at one another and said, "Let's get her to Madison." (A well-known hospital in the State of WI)
My mom walked in her bedroom to get ready to leave only to find something meaningful--- meaningful, yet disturbing at the same time. Above my parent's bed is a crucifix. (We are a Catholic family) The bed is about 3 inches from the wall. The crucifix had fallen off of the wall and landed in between their 2 pillows. My mom witnessed this and yelled, "Noooo!" It was clearly a sign that they had something ahead and that Jesus will be there to help. She continued to get ready and off we went.
We arrived at the ER in Madison where I was admitted at roughly 11:30pm (Tuesday 3/23/10). They immediately did a spinal tap and had me diagnosed with Guillain Barre Syndrome that night. And the nightmare began...
I was admitted to the Neurology general care floor where I was receiving excellent care. I started physical therapy right away and by day 2 was doing somewhat better. I was receiving IVIG treatment and got to experience the EMG (electromyography) test. (I don't wish this upon my worst enemy) The EMG test consisted of testing the electrical activity of the muscles. It is also performed with another test that measures the conducting function of the nerves. Having both of these done at once is very painful because Guillain Barre Syndrome is an auto-immune disorder that destroys the nerves. Some cases are worse than others, however, damaged nerves are not pleasant to deal with. After receving a few rounds of IVIG, I was starting to go downhill. I had collapsed in the middle of the night on my way to the bathroom; thank God I had a male nurse because he had caught me before I hit the floor. I was starting to have trouble talking and my breathing was getting harder and harder. I felt as though a truck was sitting on my chest. Before long, I no longer had feeling in my face, I could not smile, and my speech was very hard to understand. My body was shutting down. I had explained to my doctor's and nurses that I have asthma and I just needed my inhaler. The doctor talked to me in such a calm manner and stated, "Emily, at this point we believe that your inhaler won't help. Guillain Barre tends to creep into your respiratory system and when that happens, we need to give you a breathing tube." At this point I was desperate for help and gave in. At that point, they moved me into the Neuro-ICU where I was placed into an induced coma and given a breathing tube. The last thing I remember is seeing my mom crying and my doctor's arms around my mom. I just prayed I was going to make it and I prayed that God helped my parents along the way.
I woke up one day with my mom and dad in the room with me. I tried to move and nothing happened. At this point, I was 100% paralyzed, was receiving a plasmapheresis treatment through a port that was inserted in my clavical area, I was being fed through a g-tube that was inserted in to my stomach, and had gotten a tracheostomy done. I couldn't believe what I woke up to. My dad leaned over me and asked, "Emily, how long do you think you've been here?" I spelled out on the letter board, 2 days. My dad lightly replied, "You've been sleeping for 3 weeks." I started to cry. God left me with 2 ways of communication-- blinking and nodding yes and no. Other than that I had a color-coded alphabet board for communication. The nursing staff placed a call button behind my head if I needed assistance in my room. At this point, I was experiencing major depression. I didn't see light at the end of the tunnel. I had never experienced anything like this ever before in my life. I thought I was near death.
Since I was on such a high dosage of drug therapies, the "demons" started to seep through. I had started experiencing something I would have never thought would happen... anxiety attacks and hallucinations. Each morning I would usually wake up at the same time... right around 6:30am. I've never been a morning person, but one of my main axiety issues was knowing I was losing my night nurse and changing over to the day nurse. For some odd reason, I was so fearful of something happening in my room while the nurses were giving report from 7-7:30am. I made sure to be awake at 6:30am so that my night nurse could come in and check everything and turn me. Then from 7-7:30 I would lay there with bug eyes; praying something wouldn't happen. Why I had a fear that something would happen, i'll never know. Oh wait, it's because I was helpless and didn't believe the alarm would go off on the ventilator if an error occured. So there I layed, waiting for the nurses to finish up, and if my day nurse didn't come in my room when they were done, i'd freak out and hit my call button multiple times. By the way, I knew exactly when nurses were done with report because I ALWAYS had my head turned toward the door. I never wanted my tv on or music playing-- I just wanted to look out my door. I was such a watcher, I knew who was coming down the hall by the sound of their shoes... i'll be proud of that the rest of my life.
Another anxiety issue I dealt with was getting bathed. There were only certain nurses that knew EXACTLY how to handle me. As crazy as it sounds, lifting an arm the wrong way, putting a fingertip on my calves, or accidentally knocking my vent tubes sent me to the ceiling and i'd cry for awhile. It didn't take much to ruin the moment. One morning I had 2 "students" come in my room with the bucket (to wash my hair in) and soap. I knew what they were about to do and I wasn't havin' it. So I hit my call button multiple times. My main nurse wasn't showing up, so I was shaking my head to get another nurses' attention that was standing by my door. She came in and I spelled out, "I want you to give me a bath, not them". She chuckled and said "no problem, Emily". So she told the students to leave. Talk about being the boss! Yikes...
Another issue-- the ventilator. As I mentioned before, I always thought if something happens, the alarm won't go off to get the nurses attention. In my opinion (at the time of being a GBS patient and NOT now) the night nurses didn't pay as close attention to me. Because my pain was so intense, I had to be turned about every 15-20 minutes. Everytime i'm turned, the call button needed to be switched to the opposite side of my pillow. Well guess what-- the call button was on the table next to me and not behind my head. The anxiety kicked in. 'What if I need help? I can't scream, I can't move...' I hope you're read for this... I shook my head back and forth as hard as I could to make my neck muscles and pressure pop the ventilator cuff off so that the alarm would go off. Once the ventilator alarm went off, the nurses would come in. I had this all planned out and it worked. I think my heartrate went up to about 300, but I got my call light back. Would I have needed that call light before the nurse came back in? Probably not. But when you're helpless, you want anything to help you out. The call light was the ONLY freedom I was given.
Ok, let's move on to hallucinations...
As I mentioned before, the nurse would come in when I woke up to do the normal routine and then go out for report. Each morning I had a companion join me. From the mirror that sat on the wall in my room came out a male human being-- one arm and one leg at a time. EVERYDAY! I never once saw this gentleman's face, but he came out of the mirror every morning. The HUC that worked the desk at night would occasionally walk past my room. Everytime I saw him I always wondered why he had a tattoo above his ear. Because I never had glasses on, I never saw what the tattoo was. One night, a night nurse came in my room to turn me and started talking about how we played in the same softball league. I thought that was incredibly cool. Another night, I went to a restaurant with my parents and got up in the middle of dinner to goto the bathroom. While I was going to the bathroom, I realized I had to go back to the hospital to get put back on the vent because I lost my breathing. There I lay in the bed and told the nurse, she couldn't help me until I took off my jeans and my Nike's. Confused yet?? Let me explain....
The man coming out of my mirror is something I will never be able to explain. Just another hallucination we'll never know about. (Thanks to the drugs!) The HUC never had a tattoo-- it was a pencil that he always had behind his ear. The nurse that played on my softball team laughed the day I asked her what position she played-- we never had that conversation. She said she's never stepped foot on a softball field. I went out to dinner with my parents? Not a chance. I had a dream I went out to dinner with them and then I slowly started to come out of the deep sleep (from being drugged) and my nurse was in my room changing my catheter. She told me she had to move me and that's when I slipped back into my dream thinking I was in normal clothes at dinner. Hence, 'Not to help me until I took off my jeans and Nike's'.
I went through some weird stages, too. For a few days I went through, what felt like, hard plastic dug into the roof and bottom of my mouth. I was constantly moving my tongue around to get it out, but nothing seemed to work. Whenever my parents were there (everyday) I'd tell them to suction out my mouth to get the broken pieces out. There was never any pieces in my mouth. Again, i'll never know what caused that to give me such a feeling. Let's talk about how I turned into an amphibean for a few days. My hands were shedding skin like I was an iguana. My mom, the nurses, and even one of the medical students that loved me would lotion them up multiple times a day and nothing seemed to help. After a few days they went back to normal. Reason: Unknown. Here's a good one: One morning I was getting a chunky sensation at the back of my throat. Almost as if I was throwing up and it was sticking to my throat-- except I couldn't vomit because I was on the ventilator. So I asked my nurse to call respiratory therapy. They came in, deflated the balloon that allowed me to breathe, re-inflated it, and left. Not 2 minutes later it started up again. So I called the nurse back in, the nurse got respiratory therapy and they were baffled. They could not figure out what was wrong. Before long, my doctor entered the room. (He usually didn't come to see me at this hour, so I knew the issue needed attention) He fooled around for a bit and all of a sudden goes, "Are you kidding me?" Next thing I knew, I had woken up and 2 hours had gone by. There was a hole in the balloon which was causing air to get out and go back up and out of my mouth instead of filling my lungs. That was the sensation I was getting-- air bubbles. They did an emergency surgery to put another balloon in, in which they put me out for. When my mom showed up later that day, she saw the emergency kit laying on the floor. Ooops! The staff blew that one... and the explanation had to come out. Oh well, at least they saved me.
I could write for days about the intense therapy sessions I went through, so i'll try and sum things up. As I mentioned above, physical therapy started the day I was admitted. Not only was it physical therapy, but occupational therapy, too. And it doesn't stop there! It became a joke in our family because there was a "team" for everything. One day the swallow team showed up when my speech started to slur-- Yes, there is a such thing as the swallow team; they test with different foods and liquids and stick cameras through your nose and down your throat to watch how everything is working. Quite interesting, might I add. When the paralysis really started to take over my entire body, I experienced major pain. It really wasn't until I was placed into an induced coma, when they put me on strong drug therapies. (That's a whole story in itself) So as I started to get more and more pain, I was begging for something stronger. Low and behold, the pain team showed up! So up to this point, i've got physical and occupational therapy, speech therapy, the swallow team, and now the pain team. Later, when I came out of the 3 week coma, I felt as though I was going deaf. My sister was visiting at the time and I spelled out to her that I couldn't hear anyone. Her reaction: "Oh no! GBS takes hearing too??" So they called the nurse in and she said she'd get a doctor there immediately. Are you ready for the outcome? The Q-tip team showed up. Just kidding. But the on-call doctor came to my room and said they've never known GBS to paralyze the ear drum so he cleaned out my ears and ta da! I could hear again. I guess because I had been laying for so long and getting my hair washed with a bucket under my head, build-up had occurred. Phew!
Oh, I forgot to mention the "office team" that showed up. There was a man that came into my room one day; I remember this like it was yesterday. I remember this guy to be very good-looking and I didn't know who he was because he didn't have a white coat on. (Doctors wear the white coats for all of you who didn't understad that) At this point, I was in the ICU, falling asleep every 10 minutes, and was VERY irritable. The last thing I wanted to do was to answer more questions. So this man sat beside my bed and was talking to me about power of attorney stuff. I say "stuff" because I had no idea what he was talking about-- I was COMPLETELY drugged up. I felt like him and I were floating on clouds talking about nothing. Seriously. The main part of that day I clearly remember is how rediculous I thought this guy was for making me REPEAT A SENTENCE THREE TIMES! (Because it was supposedly VERY important and he wanted to make sure I was giving him correct information) Hold up... I'm on the ventilator and can't talk. I'm also going in and out... barely keeping my eyes open. And you want me to repeat stuff I don't even really understand??? So I spelled it out on the letter board THREE TIMES. What a day. I tried explaining this to my parents when they arrived later that night. My mom said, "You did what? Who was in here? I'll go talk to the nurse." Here's the kicker: To this day, NO ONE knows who came in my room that day. There is NO record ANYWHERE that a guy came in my room and talked to me about power of attorney "stuff". That's always a good laugh to have. Wow. One will never know.
Needless to say, I had so many people that came to my room to help me. My room was a constant revolving door. And I want to thank all of you for helping me in so many different ways. I couldn't have done it all without you.
As time went on, I started to see the "light at the end of the tunnel"--which I never thought I would. The sad thing about being a GBS patient is how bad the minds games are and how deeply depressed it makes you. I should really just be speaking for myself. I cried day after day just about every 6 hours. It wasn't because of the people around me, but simply the depression that my mind had fallen in to. I didn't care that everyone who walked in my room told me I was going to get better. When I thought about what I looked like, I cried. Imagine being trapped in your own skin-- not being able to move, but having your mind run a mile a minute. What if I had an itch you ask? I didn't... my nerves were damaged so I didn't have any nerve impulse to tell me I had a twisted hair on my arm. Itching and sneezing didn't occur. If I would have had an itch, perhaps I would have felt a little bit better about myself... but I had nothing. Well, I take that back-- I could blink and nod my head yes and no after I came out of the coma. I don't even want to think what I would have been like if I didn't have my neck movement. Thank goodness for that. However, the days got old very quickly when I had "nothing going on". A dear friend of mine and my family's brought a book of DVD's for me to watch. One afternoon my nurse asked if I wanted to watch a movie, I thought, eh what the heck, so she turned on "I Now Pronounce You Chuck & Larry". Who would have thought a movie like that would have upset me?? Well, here goes the crazy psychological demon I battled daily-- Watching a movie or tv, going outside or anywhere other than my room would make me cry. Why? Because it reminded me of home. Everyone else (in the movie or walking around) is enjoying their lives and getting around. I couldn't. It was a ferocious demon, let me tell you. One night my mom turned on American Idol before they left. At first I was ok with it, until the contestant started to sing "I Believe I Can Fly" by R. Kelly. Not only is that song one of my absolute favorites, but again, the words describe getting away, being an inspiration, and enjoying life. I was taken away from that. I was put on depression meds to help me get through it, but they didn't do the trick. The Doctors didn't want me to be on too high of a dosage simply because they didn't want the depression meds to overtake the nerve pain meds. Sometimes drugs cancel out others so my drug therapy was VERY important. Who would have thought there's a drug therapy specialist? You'd be surprised.