Day 21- The Faces of Guillain Barre: Bonnie's Story

Saturday, May 21, 2016 0 Comments
This was tough to write. It brought back some memories I haven't thought about in years. 

My name is Bonnie and I was 18 when I was diagnosed with GBS.  I had just graduated high school and was working at the City Pool the summer of 1995 when everything that I had been planning on came to a screeching halt. 

A month before GBS

The end of July, my left foot was itching and I noticed a strange sensation that would not go away.  Within the next few days, the itching changed to numbness and it progressed to both feet and to my left hand.  I was also having severe back pain during this time.  I thought it might have been the way I was sleeping or the mattress, so I was sleeping on the floor and even in my sisters bed.  Nothing was helping.  I went to my PCP and he gave me a prescription for a muscle relaxer and said if I wasn't feeling any better in a few days, to come back.  My symptoms were only getting worse and I was not sleeping because of them.  After just a day or two, I was going to step outside on the back patio and fell.  

I knew something was wrong, but just couldn't figure out what it was.  My mom made an appointment for me to go back to see my PCP.  She had to drive me at this point.  I don't remember much of this appointment other than my doctor telling me to go home, pack my bags and plan on spending a few nights in the hospital.  I didn't realize until later, he pulled my mom outside the room and told her that he thought I had Guillain-Barre Syndrome.  He told her that I needed to see a neurologist and he asked her if we wanted to go to Dallas, Oklahoma City or Tulsa.  We lived in a small town in Southeastern Oklahoma at the time.  My mom said Tulsa because we had family that lived there.  My Dr. called a neurologist in Tulsa and he said "if you send her here, send her directly to the ER.  But if it were my daughter, I would take her to Dallas because it's closer."  So off to Dallas we went. 

 I was admitted to Dallas Children's Hospital and was immediately taken to have an MRI done on my brain and spine.  A couple hours later, I had the first spinal tap done.  The protein levels were high and that confirmed my PCP's original diagnosis.  I had GBS.  I don't remember a lot during my stay in the hospital. I remember hating to have to ask for help to go to the bathroom since it took my mom and a nurse to help me.  I remember when I would walk, I could hear my feet hit the floor, but could feel nothing.  I remember the food being terrible and the one day I got something good, a Subway sandwich, I didn't get to eat it because I had to go for some other test. 

 I remember having the 1st EMG and crying because it hurt so much. I remember the 2 guys going the EMG standing over me laughing when they shocked me so hard my leg twitched and I kicked the wall.  I remember my dad and brother visiting me in the hospital and my brother, who was 12, was more interested in the package of M & Ms on the counter. It was when the new blue M&Ms had just come out.  (I can't blame him, it was pretty cool!)  I remember getting a visit from what seemed like the entire psych dept to see if I was making things up before they would give me 3 doses of IVIG, Physical therapy and another MRI. I remember telling my mom, "Who would ever want to be a nurse!  That would be the worst . Job . Ever!!"

After 7 days in the hospital, I was discharged to go home.  Driving home from Dallas to our house, I remember a song that came on the radio.  It hit me then and has become "my motto".  It was Fleetwood Mac's song "Don't Stop Thinking About Tomorrow".   My life had changed so much in such a short amount of time. I couldn't walk, I couldn't feed myself, I couldn't roll over, I couldn't do anything by myself.  I started physical therapy within a few days of being discharged.   I was going 5 days a week for a few weeks and then dropped to 3 times a week.  Physical therapy kept me going In more ways than one... I was so depressed and alone. Going to PT gave me a reason to get up and get going. It gave me the "social life" that I was missing out on.  It kept me "thinking about tomorrow."

After a few months, I was getting stronger and was able to do a little more for myself.  But that was about the time the neuropathy pain started.  My feet burned and hurt so bad. The only thing that would stop the pain was to soak them in a cooler of ice water to numb them.  I was having to soak them about once an hour, day and night, before and after PT.  

This was my rock bottom.  Between the pain, not sleeping at night, the depression and feeling so completely alone, I was ready to die. I considered suicide but the only thing that didn't make this the best option was my mom.  I didn't want her find me.  My biggest regret was not telling anyone how much pain I was in...physically, mentally and emotionally. I tried too hard to hide it all. I didn't want anyone to know how bad everything was. I didn't let anyone see me cry. I definitely could have benefited from some meds at that time.

That low point lasted too long...about 6 months.  By this time I was seeing a neurologist in Oklahoma City.  I had another spinal tap, an EMG or 2, EEG, sural nerve biopsy (I still have residual problems from this after 20+ years) and lab tests monthly.  The neurologist started me on Neurontin to help with the pain in my feet. After the first dose, it worked!!  I slept solid for the 1st time in months.  That was my wonder drug!!  I didn't have to soak my feet in ice water any longer, I was sleeping, I was still depressed but nothing like before. I was getting close to my one year anniversary...July 29th and was back to work at the City Pool where I had been before.

 I was enrolling in fall college classes and had my next job lined up to start when the pool closed for the season. I was driving again.  I was dating.  I was thinking about tomorrow. Even though I looked like I was back to normal, I wasn't. I didn't have any feeling over the majority of my body, I felt clumsy and wobbly, I couldn't remember anything because of the Neurontin. And worst of all, I couldn't wear any cute, stylish shoes.  I was 19 years old wearing "old lady shoes".  Ughhh!

Not knowing what the future held, I took a chance and enrolled in the LVN program.  I took the admission test and passed, interviewed and was accepted. Also during this time, we got the Internet at our house.  This was when everything was still pretty new and chat rooms were nothing like today.  It just so happened that I met my now husband in one of those chat rooms!  He flew to Oklahoma for my LVN graduation and 2 weeks later I moved to California where I found out I passed the LVN test and got my license.  It was July 29, 1999. Four years to the day I got GBS.   I feel like I went full circle at that point!

It's been almost 21 years since I got GBS.  (The neurologist in Oklahoma changed the diagnosis to CIDP because of the residual numbness and lack of reflexes.)  I still have very limited feeling in my arms, hands legs and feet and still no reflexes.  BUT... Because of thinking about tomorrow, I've gotten married,  I've had 2 children, I've gone back to school to get my RN license. Even though I thought that being a nurse would be the "worst job ever", I can't imagine doing anything else. Going through what I have had made me a stronger person and a better nurse.

I try not to think about what I've lost... Even though it kills me that I can't feel my kids hands or face when I touch them.  I have to keep thinking about tomorrow. I have to keep going and try not to look back. That period of time was only a small part of my life. Granted, it completely changed my life and my families life, but in the grand scheme of my life, it's a small part.

And... Oh how I wish I could wear stiletto heeled shoes. If I could, I would wear them daily with my scrubs!  I'm waiting for that tomorrow when I can wear the really cute shoes... And when I can, my husband better clear out closet space because I'm going shoe ...stiletto shopping!