My name is Corey (some call me Lindsey, my middle name), I am 28 years old and I live in New Hampshire.
My long journey with Guillain Barre started in March of 2015. For weeks I had been suffering from the flu and major pain in my abdomen. I am not one to rush to the doctor every time I feel sick so I decided to wait and see what happened, I never imagined it could get any worse. After a few days of non-stop vomiting I threw in the towel and decided to take a trip to the ER. After some tests, blood work, and an x-ray the doctor told me my liver was double in size and I would being admitted to the hospital. I was scared of course but I tried to remain optimistic. After an upper endoscopy and a biopsy of my liver, I was given the official diagnosis: I had non-alcoholic fatty liver. They gave me some potassium pills, assured me that everything would be just fine, and sent me on my way.
Over the next few days Guillain Barre got it’s hands on me and still has refused to let go. The tingling and weakness was almost immediate, it felt like my hands and feet were just about to fall asleep but never quite got there. My legs were so weak I couldn’t even make it up the stairs and I began to fall at random if I walked to much in my house. I became very frightened and took a trip to the ER. After some blood work and a lot of waiting around I was told to go home because there was nothing wrong with me. Two days later I was completely paralayed from the neck down.
My neighbor was kind enough to pick me up and place me in the back of my mother’s car, she rushed me to the hospital. When we arrived two paramedics came outside and picked me up, they brought me in, and placed me in an examination room. After more blood work and some tests the doctor said there was absolutely nothing wrong me. He suggested I see a psychiatrist or perhaps seek help for whatever addiction I had. A nurse then forced me to my feet which was probably the most excruciating pain I have ever endured, she placed my hands on a walker and let go of me. I fell to the floor and couldn’t move, I just lay there crying. Not only was I in a massive amount of pain but I was terrified and humiliated. The paramedics brought me back to the car and again sent us on our way.
Early the next morning a family friend was kind enough to help us get to Maine Medical. I was quickly admitted and the hospital would become my home for 34 days. The first couple of weeks were extremely scary because no one knew what was happening to my body. I went through every possible test and a massive amount of blood work yet we still had no clue as to what was going on. Then finally came the spinal tap and that was all we needed, I was officially diagnosed with Guillain Barre Syndrome.
The recovery process almost felt like torture but I was willing and ready to do anything in order to save my life. There were moments I felt like giving up and there were times I was so humiliated I didn’t think I could go a step further. I went from being an able bodied, healthy, young adult to someone completely dependent on others. In order to get a nurse I had a rubber ball placed between my neck and chin, since my head was the only body part I could move I would have to use my chin to squeeze it. I used it for everything from needing a sip of water to requesting the ever so elegant bed pan that I was stuck using for longer than I would like to admit to. I received IVIG treatment for 5 consecutive days which worked wonderfully in my favor. The movement in my hands came back just a little bit and at that point I was able to start my occupational therapy. I progressed slowly but surely and eventually I was given the green light to head to a Rehabilitation Hospital where I would start learning how to be human again!
I spent a total of 3 ½ months at Northeast Rehab, the average patient sent there only stays about 2 weeks - so that gives you an idea of the severity of my condition. This facility changed my entire life and I am incredibly grateful for each and every staff member that I was lucky enough to work with. Within that time frame I went from completely bed-ridden to using a walker/wheelchair combo. I was discharged on August 18th, 2015.
Since coming home I have been committed to lots of physical and occupational therapy which has helped but I am still wearing leg braces and using a forearm crutch, my balance is much better but nowhere near where it should be. I have gone through a gallbladder removal, hernia repair, suffered through lung infections, hearing loss in my left ear due to nerve damage, asthma attacks, chronic fatigue, nausea, and sadly I was diagnosed with CIDP. I no longer have reflexes in my arms or legs and I still suffer from constant nerve pain. I am getting better but it’s a slow process.
For the next 3 months I will receive in-home IVIG. Once I have completed the treatment I will be assessed by my neurologist to see what’s next. Nothing about this has been easy but each day I am so thankful I have made it this far and I will continue to fight! Thank you for allowing me to share my story. If I can ever be a help to anyone going through this disease, please reach out to me. At the very least I can be a listening ear or a shoulder to cry on.
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IG: @lindseyrushe
