Day 22- The Faces of Guillain Barre: Kaitlyn's Story

Sunday, May 22, 2016 0 Comments

It was something I had never heard of, and unfortunately I learned about it by getting it. After two trips to the doctor and three trips to the emergency room because of tingling in my hands and feet and not being able to move anything but my head, and having complete double vision and crossed eyes, I was finally diagnosed on July 17th 2015, and admitted to the hospital.A day after i was moved into the icu, I had aspirated. I had to have a feeding tube put in and was then put on a ventilator. I don't remember being intubated. The last thing I remember Is not being able to breathe, and trying to talk but I couldn't, I was freaking out, and the doctor telling the nurse I needed to go under. I was living with the help of a machine, and out for 10 days. I could not move or communicate at all. My parents were trying to get me to write to them on pieces of paper, but nothing is readable. When I woke up I had no idea I had been there for so long.

When the machine and tubes were taken out, besides the feeding tube, I was moved to a different room in the icu. Still not able to move or do anything on my own, or control any of my body functions, I had the worst nights of sleep and days of my life. I still felt like I couldn't breathe and was panicking at times, and could barely raise my voice to speak.
Being a teenager, having to have a diaper, and having to be changed, was absolutely humiliating to me. I was only 16, and was so scared. I had no idea why any of this was happening to me. I became really depressed and almost angry, I was angry that I had to go through all this pain and suffering. About a week after I was moved out of the icu. I had to have a second feeding tube put in because mine stopped feeding the things through.

I still wasn't strong at all, I couldn't change positions in my bed, I had to call my nurse to move me because of pain. I was barely strong enough to push the buttons, most of the time I had to ask my mom to call.

In the hospital they worked on trying to get me strong enough to sit up on my own. And then eventually start to walk with lots of help and a walker.
Then I was moved out of town for rehab, stayed for a bit. But was ready to go home, and discharged to recover at home. It had been a really long ride. And I still had a long way to go. I still had to teach my muscles to work again, and walk again. I had to work to get all of my strength back. Using a wheelchair and a walker until I recovered. It was really hard not being able to do anything I used to do on my own. I was using my walker and assistance to get to my grandparents pool, and with my papa's help, I swam to try and get my strength up, and the coldness of the water was so comforting to the pain my nerves had caused. Swimming worked more than anything I was doing with PT and OT. So if you're trying to recover from gbs, and working on getting your strength back, I definitely recommend swimming.

I'm not sure what the variant of my gbs was, but I do know that my doctor said that in most people, it either affects the coating of your nerve, or the nerve itself. In my case it affected both. Which was even more rare than the disease itself. I still deal with symptoms every day, I get sick a lot easier now, and when I'm sick I'm really sick. I still have tingling in my hands, and sometimes my feet. And I have excruciating nerve pain on an almost daily basis. My face is still drooped a little, one side of my mouth doesn't move like the other, and after long days of activity, sometimes I can barely walk the next day. It's hard, but I'm prepared to deal with this for the rest of my life. I'm not going to let Guillain barré define who I am. I'm still going to drive and get a job and go to college. I'm going to kick gbs ass!

This whole experience has given me a new appreciation for life and a whole lot of other things. Before I was sick, I was very depressed, suicidal, and was even harming myself. But after this whole experience. My whole outlook on life has changed. I love myself, and I know I'm strong. And I also know that I'm cared about and that I am so lucky to be alive.

 I want to give a very special shoutout and thank you to my amazing papa, who was there for every step of my recovery. He'd come in and make me laugh, and he motivated me to not give up and work hard to get my strength. To this day he makes sure I do my exercises. He's my best friend. And I don't know if he'll ever see this. But I just want to say I appreciate all he's done and does do for me.

I'd also like to thank my nana for always making sure I had on Chapstick, and making sure my mom was eating. I'd like to thank my dad, my mom, and my boyfriend Kyle for staying with me through it all, another big thank you to my aunt Jess and uncle, and my cousin Brandon, whose pictured above with me in the hospital.
For being there, and coming to see me and trying your best to make me laugh.
Thank you mom for taking all that time off of work to stay by my side. Thank you for playing cards with me and comforting me when I got discouraged. And thank you dad for being there to support me whenever you were able to.
All of your support means the world to me.

I rambled there near the end, I apologize! Well, that's my gbs story. And to anyone out there fighting, you're not alone. You can do this. I believe in you.