Diagnosis
By the time we made it over to the ER I was not able to walk in a straight line (although I thought I could), the right side of my
face was drooping, I couldn't get up after sitting down. Actually while dad was parking the car I went in to the ER and sat down on a chair, when the triage nurse called my name it took me about 3 times before I was able to get up- there were other people sitting and standing beside me and they just looked the other way. The nurse took me in right away, my blood pressure was something like 140 over 120 and my heart rate was something like 140 or higher. They took me in and checked my heart, which was fine. They called the neurologist again, the first thing that they did was a cat scan as they thought that I might have a brain tumor- this was ruled out. They then did a spinal tap- which took 45 minutes, the longest one my neurologist said he had ever done, it was only coming out drop by drop. That was very stressful as I was so scared of it, I was sweating so much the beads were running down my back. It did not hurt though, I believe this is probably because I was numb. My leg did kick up a few times as the doctor hit certain nerves. After this was done they took more blood and said that they were admitting me into the hospital and that I would spend the night in the ER. Mom, dad and my brother (who had driven up from another city that night- at which point I thought- yikes this must be something serious) went home. It was a long night as I was not able to sleep well but I also was not able to get up very well by myself, all night I kept praying to God that I did not have MS. This was one of the options the doctor had mentioned (also what was on my mind), he also mentioned GBS, fluid on my spine and a few others I can't remember. The next morning first thing mom, dad and my brother were back, the MRI technician came in to get me for the MRI, they were going to check my head and my neck and spine (I think). When she came to get me I told her I could walk, of course my walking was crooked and now that I look back I know that I was leaning on her quite a bit. I must have looked pretty bad as the people in the waiting room all stared at me as we walked by. We ran into the CAT scan tech who had come in the night before, who I kept apologizing too for having to come in. Also my high school friend was a nurse in the ER that night before and had put me into a "semi private" room. Everyone was so nice and helpful. I was in the MRI for 1 hour, MS was ruled out as was anything else from the MRI, the test results from my spinal fluid (high in protein), no reflexes below the knee, numbness on both sides of my boday all indicated GBS. They hooked me up to an IV immediately when they found out, this was IV IG (immunoglobulin- which helps to stop the progression and reverse the effects). They then took me for an EMG- after which the doctor said that my nerves were extremely damaged. That normally during GBS the myelin sheath around the nerves are damaged but in my case the axons inside the nerves were extremely damaged as well (to the point that the graph were flat lined- meaning there was no nerve conductivity at all). He said this was rare and he felt I had been fighting it for months in order to see this kind of damage. I was then sent from the ER I to the pallative care unit (the only place there was a bed for me).
Hospital Stay and Rehab Stay
I was still walking (although barely and probably shouldn't have been trying) when I arrived in pallative care. This was also when my extreme headaches and neck pain started- nothing like I have ever felt before. They gave me dilauted, to high of a dose as I was feeling great and was inviting everyone to come visit me. By the next day I was not feeling well and was sleeping most of the time. At one point I asked my friend (who is a nurse) to take me to the bathroom, she with a nurse had to walk with me, basically carrying me as my walking was going downhill pretty fast- this was the last time I walked until I was getting better and the physiotherapist came to get me to stand, which was days, maybe weeks later- I don't really have a good perception of time lines. So that was on August 18th when I stopped being able to walk and get out of bed for that matter- that is when they started to use the bed pan, when the nurses had to roll me over in bed and prop pillows up behind me if I wanted to lie on my side, where they had to pull me up to get to the top of the bed, where they had to basically do everything for me. The rest of the days I am not to certain about, other then on the Thursday the 19th it was the worse day, the neurologist thought that he was going to have to send me to another city to plasmapheresis (blood taken out and cleaned and then put back in), he had booked a bed in the ICU unit for me and they thought that they were going to have to put me on a ventilator and life support. I later found out that they even thought that I might not make it and that I was so close to not making it and stopping breathing that they believe it is a miracle that it didn't happen. I remember seeing mom and dad, my brother and sister in law, my best friend and godmother's faces and thinking- boys this isn't good- and then seeing the neurologists face and thinking wow I am going to die (which I guess I wasn't far off). They had me breathing in a machine and it could not go below 1 or I would have to go on a ventilator, sometimes it was as low as 1.3 or 1.5- so very close but I stayed above 1. The next days were a blur, I slept a lot, I was drugged with gravol, another form of anti nausea drug and dilauted- all via injection- my head and neck pain were extreme, for 3 days I needed someone with me 24 hours a day, I was extremely nauseated, felt like I was going to throw up all the time and actually did a couple of times if I tried to take pills or eat. I could no longer eat food, my mouth would not open, I had to drink through a straw and even that was almost impossible and it was on one side of my mouth only, my face was paralyzed- my eyebrows would not move, I could not smile, my eyes were bulging, my eyes wouldn't close all the way so when people looked at me when my eyes were closed all they could see were the whites of my eyes, my face was swollen (so everyone tells me as I did not look at myself for 2.5 or 3 weeks- I was to sick to even want to and no one was telling me what I looked like, the doc would come in and tell me to smile and say good even though I wasn't moving my lips at all- but I didn't know that). I had no expression on my face, no movement, only able to have some liquids, but I also had no appetite at all. I was able to swallow though- which was a good thing. I was not able to move- not able to lift my legs off the bed, the nurses had to move me around in the bed, only using a bed pan, I did not have a bowel movement for over a week, the nurses had to lift me up in the bed, the nurses had to wash me, wipe me, wash my hair. I had to have a fan on me at all time, as well as have ice packs on my face and cold facecloths on my face- these had to be changed often as it seemed like the ice would melt as soon as it was on my body - although my body was not hot to the touch my insides were on fire. My blood pressure and heart rate continued to be very high (they actually didn't go down until the week before I went to Stan Cassidy (the rehab facility)- then my blood pressure went very low). It was like I was paralyzed, all I could do was lie in bed and sleep. I went from being completely independent to having people have to do everything for me, I couldn't even brush my own hair, my brother and others were brushing my teet for me, holding glasses for me to drink out of, lifting things for me- basically doing everything for me. The week of August 23rd I think I started to get a bit better- I think- at least they were not thinking they had to send me to another city anymore. I remember my mom and godmother would massage my feet and hands with lotion until one day my mom touched my feet and I screamed as they hurt so badly. That is when I started to get the extreme pain in my hands and feet- it had left my head and neck (only to come back a few times), my face also hurt for a long time. That is when they started to put me on gabapentin, quickly increasing it to the highest dose allowed and the nerve pain never went away to this day- although it certainly isn't as bad as it was then. Being extremely hot started to get a bit better when I was moved to the rehab unit of the hospital- although to this day I still get very hot and I still sleep with a fan whether it is Winter or not. During recovery various parts of my body have twitched at different times, my face, my chin, my legs, my whole body- almost like a seizure thing- I am not able to stop it and that still occurs to this day. My hands, feet, legs and arms at times feltl like they were tearing- I guess that nerve pain can also feel like bugs crawling inside you skin or running water. When I started to come out on the other side it was time to learn how to do eveything again, like walking, picking up glasses, opening containers, zipping up my clothes, tying my shoes etc. The first time I saw a physiotherapist they came with a walker and wheelchair. When I first just stood up I was so wobbly and unsteady someone had to stand beside me and hold me. After I was able to stand the physiotherapist got me to walk with the walker- when I first started walking it was like I was shuffling, I wasn't picking up my feet- still thrilling though since I had not been able to walk or stand. My legs felt like they weighed a ton and were wooden blocks. I was so exhausted that there were times when I didn't want to do anything when the physiotherapist came to get me, but I would push myself to do it, each time walking- or shuffling- haha- my way ahead. Eventually I was able to lift my feet off the floor- this lead to my feet and lower legs feeling like dead weight, kinda like logs- I had no feeling and since my nerves were so damaged it was very difficult to feel how to walk properly. So most of the time it was like I was stomping. I looked unbalanced although my balance was pretty good, actually very good- but because I had no nerve activity and very little sensory the signals were not going to my head- therefore it was like I was walking on foam with 5 lb weights on each leg. A very odd feeling. When I started walking on stairs I had no perception of where the step would be when I stepped down- making it very difficult to walk up and down stairs- I had no judgement. I remember they used to have to wash me in bed, that meant washing my hair too. I also remember the first time they showered me- as I was sitting down- it felt so good- then I remember the first time I was able to shower on my own sitting down and then standing and then at home. I still remember the first time they let me go home for the day- it was so great and then for the weekend- even better and then every night (these times I was staying at my parents place). When I first went to the rehab floor in the hospital it was a long weekend and no physiotherapists were working so I walked everywhere - when people came to visit- as long as I had the walker and they had a wheel chair behind me when I walked. Then I found out I pushed myself to hard- I over did it. That is one of the hardest things about GBS- it is easy to overdo it and not know. When I first tried to start typing it was really hard too- it hurt a lot and I was really slow and I couldn't type like normal. My hands were very puffy and sore- one of the things the occupational therapist did was have me soak them in hot (well warm) and cold water- contrast baths in order to help with the swelling- and when I was out of the hospital and rehab I continued this and the massage therapist did lymphatic drainage- they stayed puffy and sore for many months, probably around 5-6 months. Another thing that the ocupational therapist had me doing was putting my hands in barley and massage them, the barley felt like sharp knives to me, then I "graduated" up to wire and copper and tubing- this also felt sharp but it was sharper- of course- but after doing it for about 1 minutes my hands would be numb and not hurt for awhile. They had me hanging clothes on a clothes line, cutting food, tying my shoe laces. Then physiotherapy had me biking, balancing, doing obstacle courses, doing stairs, doing the Wii games (for balance) and after each 1/2 hour session of any of these things I would have to go sleep for awhile. My finger tips hurt and feel odd, almost like when you have had them in water to long. I wasn't able to pick things up, like pills, I couldn't feel where they were. One of the biggest things is the fatigue and adjusting and not thinking that you are just being lazy. It was (and still is) hard to know what to do and what not to do. Most of the time all I wanted to do was sleep. In some ways it seems like learning to walk again was the easy part- although I know that's not true as the first time I walked to the bathroom with the walker I cried cause it was so hard.
I did have a couple of down days - I think when things started to sink in- when I wasn't as sick and I was starting to walk- or I would try to walk and realized how long it was going to take me to get better- mind you it was really only a couple of days- but it is a lot to deal with - going from being able to do everything to nothing- not even feed yourself. I actually ended up being able to get home from the hospital and rehab in two and a half months- which was amazing and the docs and therapists said was exceptional. Not all cases are this good. I think that not having a clue what GBS was, what the odds were, what I was up against was the best for me- I had no clue- I thought I would get the IV IG and be better then I thought if I could just walk I would be better- all which took me much longer then I thought it would. Each stage is hard- the first one being really sick, then being moved to the rehab although you don't really feel like you are ready- I had a complete meltdown- I was so used to the nurses I had and didn't want to leave them- I have never had a meltdown like that before. Then moving from the rehab unit in the hospital to Stan Cassidy (rehab centre) was hard- not as hard- then going from Stan Cassidy to home was not hard but different and then from my parents to my place- seemed overwhelming. Each step held new challenges and although each one meant I was getting better it still brought on new emotions and feelings and challenges.
I do have to say that I had excellent health care, from the nurses, LPN's, doctors, therapists, even the cleaning ladies- everyone was so excellent and kind and I feel so lucky.
Below I have added the song which inspired me while I was in the hospital trying to walk again. I would listen to the song and picture myself not only walking but dancing, I pictured myself dancing many times and one night I even had a dream that I got up and walked out of the hospital- there was absolutely nothing wrong with me and I told the nurses that I shouldn't be in there and I left.