The Faces of Guillain Barre 2017: Day 9 Elise

Tuesday, May 9, 2017 0 Comments

Before Guillain Barre, I was healthy girl, very active. I lifted weights, I nannied, and was always out and about doing something exciting. Exciting in my eyes at least. The summer before my Junior year in college everything changed. I started to have back pain, out of the blue. I thought it was just a weird body thing that will just go away, cause you know those tend to happen, but it didn't. 

The back pain slowly became worse and spread to other joints: first my wrist, then my ankle, my knee, my elbow, and finally my shoulder. All on the left side of my body. I started to lose weight, and I thought it was due to not working out for a while (losing muscle). I started to see a chiropractor who made adjustments to my spine and knee and etc, but it only got worse. I would try to ice my joints, bu I didn't have enough ice packs to cover them all. Despite it all, I packed up and went to college. I saw a chiropractor there who diagnosed me with scoliosis, but told me that that can't be the cause of sudden pain. Frustrated, I attempted to focus on my first week of classes.

One morning I woke up and the toes on my right foot were tingly, sort of like my foot was asleep. I expected it to go away, but it didn't. I ignored it. The next day I woke up and the tinglyness had spread to my arms and legs, also my left shoulder lost some of its strength. I freaked out, and went to urgent care where they took blood tests and after finding nothing, told me I was just stressed. Just relax, they said.

I continued to see the chiropractor as the symptoms got worse, and eventually she told me that there is something else going on, not spine related. The next day my doctor had told me to go to the emergency room and to ask them to take more tests than just blood tests. I went to the emergency room like he suggested. They took a blood test, sent a spinal surgeon to go talk to me, and he told me that I was just stressed. Just go home, he said. I did.

After being sent home for the 3rd time

I continued to go to classes that week, and then the pain stepped up. My neck started to hurt so bad, I couldn't think. I woke up crying, and was too stubborn to take any pain killers. I went to bed every day hoping it would just go away. I woke up every day to more symptoms. I decided to call a neurologist, and sent a quick and desperate prayer up. The first one I called told me that the earliest appointment would be a month from then. Frustrated i said "yeah that won't work" and hung up. (I'm nice I swear). 

I called another neurologist and they set up an appointment that week. He ended up being a pediatrician, but he knew what he was doing because he told me what I had right away. I was like "Gubulubulu whaaaa?" He sent me to the hospital again and called them with a list of tests to perform on me. I had my friend drive me there because at that point I was too tired to drive myself. Another few hours in the waiting room. When I was emitted they performed a Spinal Tap on me, which came back negative. My mom drove up to be with me and we stayed in the hospital for three days in order to wait for a certain neurologist, apparently top notch, to take a look at me. 

When he finally came in, he performed some reflex tests on me for about a minute, told me that there's nothing wrong with me (although at that point I couldn't walk) and sent me home. They wheeled me down to the parking lot, and then something awful happened. I have never had a migraine before, but this was one of the worst days of my experience with Guillain Barre. I was in so much excruciating pain, and I couldn't stop throwing up. A block away from the hospital, my mom turned around and brought me right back. They drugged me up and sent me away again. This seems to be a trend.

For about a week, I stayed at my boyfriend's parent's house, because I didn't want to go home. Going home meant giving in to whatever was going on in my body. It meant taking the semester off. It meant that something serious was going on. I didn't want that. I just wanted to live my life like I was supposed to. Like everyone else my age was doing. And so for a week I stayed there waiting for any improvements, which didn't happen. 

Every morning I woke up, and thought that maybe that day I would be able to walk normal again. Every morning I woke up less able to function. I became so very tired and depressed of not being able to move. I had lost my independence, and started to have to depend on others to help me with everything, including fun stuff like going to the bathroom. Netflix became my best friend, but like that annoying friend that you're so sick of. Actually no, I don't have that kind of friend but I'm sure some people do.  At this point, I started bargaining with God. I would've traded anything to be able to move again. At this point, if I had to endure even another month of being paralyzed, I would've rather died. Dramatic. I know.

A week came and went and my mom picked me up and took me home. More doctor appointments, more worsening of symptoms, more pain. Going to the bathroom became the worst part of my day because moving became harder and harder, and my poor mom wasn't strong enough to carry all of my weight. Wake up. Take drugs. Sleep for another half hour until the pain was more bearable. Eat food that I couldn't even taste anymore. Throw up. Cry. Watch netflix until my brain became numb. Sleep and repeat. Until FINALLY a neurologist diagnosed me and sent me to a hospital who TOOK ME SERIOUSLY and started treatment right away. And there were so many tests. Two hour MRI, spinal tap, blood test, weird nasal test that hurt, blood test, CT scan, and it never stopped. 

Three days later I could lift my leg up. I cried, my mom cried, my nurse cried. We all cried. It was great. I kept trying again because I was so excited that I could lift my leg! You should try it sometime, it's fun. More treatments and tests and physical therapy. Ten days and I was sent over to the Rehabilitation hospital where I spent a week relearning how to walk, dress myself, shower, get up without falling over, walk in a straight line, and the list goes on. Then I was finally allowed to go home and recover on my own. And oh boy! I so missed being allowed to pee without people watching.

The story sadly doesn't end here. During my recovery stage I've had to go to urgent care, or some other doctor's appointment for the most random stuff. Guillain Barre is basically a "figure it out yourself" kinda illness, because it's so different for everyone. I had pain in random places, the feeling of constantly needing to pee, and no one mentioned that flare-ups were a thing. Flare-ups are the best. The symptoms come back and it scares you into thinking that you're gonna relapse but then it just goes away. Fun stuff. 

Standing without assistance. First day home from the Rehabilitation Center

Now it is ten months after the first symptoms came, eight months after my diagnosis, and seven months out of the hospital. I still have a long road ahead of me, but I am stronger than I ever was before. Life is so much more precious to me, and I appreciate every piece of it.