Early signs, a two-year struggle to get diagnosed and learning to live with an autoimmune disease.

First day of college jitters. I was so nervous and incredibly full of butterflies in my stomach. I was all packed up and excited to go. You could’ve sworn I had a marvel comics lunchbox packed in brown paper bag a la old school. Even my dad had tears in his eyes (even though school was about ten minutes away from my house). It was the most important day in a young person’s life. Everything was going great, teachers were being teachers and assigned about 20 million things at a time. By the end of the day I was mentally exhausted from the amount of assignments I was being bombarded with. In fact, I was so tired my legs felt numb. What can I say? I totally ignored this feeling. The next couple of months it got worse. I was in my second semester, things were still pretty steady.

One day, I was finished with my music class had the same numb feeling in my legs. Once class was done I got up and I still tried to shake this feeling off and it wouldn’t go away. I told my parents and they thought I was making things up. So they told me I needed to be more physically active. I did just that. I played tennis, ran, and swam. I lost about 40 lbs that summer. Seemed pretty sweet right? The sensations of numbness and tingling did not go away. I kept losing my balance and I couldn’t hold my books anymore. I used to enjoy walking to school on a nice day, but at this point I was so over it. This numb feeling and tingling left my legs in a weird weak stage. It was kinda like “The Walking Dead” type of pep in my step. Not a cute style when you’re already not feeling well and people start to question things. I was so confused about what was happening. It definitely took the focus out of school and made me into an emotional wreck.

A couple of weeks later, I came home crying. I had fallen from my trip back to my house from school……let me finish! At this point of my symptoms, I’ve been unable to walk well or keep my balance. I was walking down a muddy hill, slipped and fell on the “good grace” of a shady pine tree. The temperature was in the upper 90’s (great Chicagoland heat wave) I was muddy, hot and in excruciating pain. I was pissed off. So pissed off, in fact, that I went on a tangent and started to cry like a five year old. “Why is this happening?, Why me?, What did I do wrong?” those were the pesky questions I asked myself, over, and over again. I obviously went back home at some point. I don’t really remember how or when I got up, but I was done!. It seemed like an eternity to get back home. I saw my dad and I cried. He picked up the phone and called Children’s Memorial Hospital. (Now known as “Lurie Children’s Hospital”)…. Now before anyone starts to ask me why I went to a children’s hospital in the first place was because I was 17 years old at the time.

“One Doctor contemplated brain surgery; the other wanted to completely eradicate my immune system.”

I saw a neurologist and he quickly said “This looks like Guillain-Barre syndrome”. After that Doctor, I went to see about 7 more (you know, “just for fun” ). One Doctor contemplated brain surgery; the other wanted to completely eradicate my immune system. I went to Delnor Hospital and the neurologist there was very nice and patient. He asked me to try one more Doctor in the city. He sent me off to University of Chicago Hospital. There I met a neurologist/neuromuscular specialist. She was able to narrow down the big diagnosis umbrella from Guillain-barre to Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) then to be even more specific: Lewis Sumner syndrome.

It took two years to get a diagnosis and begin to receive proper treatment. By that time, I couldn’t walk or write and was in constant pain. I saw myself spiral down into a deep depression which, I thought, was the end of me. I saw my mom cry when she saw that I couldn’t walk. I saw my dad cry when they first put me into treatment. I had to put school on hold. My new friends from college did not visit me, while my old ones tried to pull me out of my dark depression. My boyfriend, at the time, left me when he couldn’t understand my illness. I gained my weight back from the medicines and lack of movement. My immune system was destroying itself and my sense of being. I was put on Intravenous Immunoglobulin (IvIG). I vomited with every treatment, had killer migraines and flu-like symptoms. It was a hard time to adjust.

Ten years after my diagnosis and I still suffer from the symptoms. Not only was I getting back on track with my own life, but I learned to mentally heal myself through accepting and fighting back. If there’s one thing I have learned through this unforgettable process, it’s that life keeps going. It keeps going in a way where things are meant to happen to certain people to truly find themselves. I take my immune disorder as a blessing in disguise (yes,I really do). I have learned what I could do regardless of ALL the odds against me and my life plans. This process has guided me to be in the medical field and help those who are going through the same painful experience and emotional times. I have hugged, laughed, and cried with my patients through their time of need. I am truly thankful for the support of the closest of people. I’m blessed that I had the opportunity to find a treatment.