Living My Own Miracle

There isn't a day that goes by that I don't think about my diagnosis. It was an event that would change the course of my life forever. I don't like to say that it ran me "off course" because it didn't ruin me; at least not long term.

When I started feeling symptoms, I obviously had zero idea of what was happening to me. I confided in my sister who convinced me to talk to my dad who then convinced me to go to the Emergency Room. My dad met me there and we both listened to the doctor tell me that I was having high levels of stress and anxiety. Meanwhile, I was only a week into my Fall semester. I had no stress, but I listened because he was a doctor and I am not. The very next day, my symptoms worsened. When they first started it was a minor tingling sensation in my feet and in my hands. So at this point, it had moved into my back and my tongue. I panicked immediately. I called my dad and again, he met me in the Emergency Room. And to no surprise, a different doctor said the same thing as the doctor before. "You are experiencing stress and anxiety." But this doctor said he believed I was hyperventilating...I know what you're thinking. If I was hyperventilating you would think I'd be able to tell. But again, we trusted the doctor and his advice to leave campus for the weekend and spend it at home relaxing.

My dad made the decision to take me to the ER at Children's Hospital of Philadelphia. Even though I was 19 and not a child, because I had surgery there previously, the ER promised to take me until I turned 21. The morning we went I started experiencing some pretty bad pain in my back and my neck. This time I was more confident we would get an answer. Unfortunately, it was just more speculation. However, the doctor told me that I probably pinched a nerve which is causing the pain and a lack of blood flow to my extremeities hence causing the tingling sensations. They informed me to make a neurology appointment, just in case. I finally felt a bit of relief thinking it was something minor.

That Sunday afternoon I drove myself back to campus. At this point, my pain was unbearable. I could barely walk. That night I slept for maybe a total of 20 minutes. I kept getting out of bed tryng to walk off the pain. I tried sleeping on the couch. Nothing helped. When I would try to get back in bed, it was nearly impossible. I had to climb onto my desk that was at the foot of my bed and then fall on top of my bed. When it was time for me to get up to go to my nerology appointment, I crawled out of bed to brush my teeth. My dad let me know he was close by and would pick me up to take me. I noticed something felt weird when I was brushing my teeth and realized half of my face was experiencing paralysis. Again, I panicked. I called my dad and told him that I thought I was having a stroke. I called 911.

After a few minutes on the phone with 911, my dad had arrived and told me that I have no other symptoms of a stroke so I told 911 that it was no longer necessary for them to send an ambulance. We decieded to go to my appointment and do whatever it is the neurologist suggests. After meeting with him, he informed us that there were two possible situations. One being multiple sclerosis and the other being guillain barre syndrome. He ordered me two STAT MRIs at the hospital to rule out MS. And then requested for me to be admitted into the hospital.

The first of countless IVs.

After my MRIs, I simply had to wait. Really it wasn't simple. The pain kept getting worse and I could barely even stand on my own two feet, but it also hurt to sit or lay down. After hours of waiting I finally got a room.We were informed that the MRIs came back normal which was good news. However, we knew the next step wasn't going to be pretty. The next morning I was due for a spinal tap in order to diagnose the GBS; it was the only way to do so.

Let's just say, after a few failed and painful attempts at getting fluid from the spinal tap, I was finally diagnosed. I started IVIG treatment which basically replaced the antibodies in my blood. The reason for doing this is because GBS is an autoimmune disease where the antibodies in my blood are basically confused and attack the nerves around my brain and spinal cord. It can cause parlysis throughout the body which is what happened to my face. I was very lucky because in most cases, the respiratory system collapses and the person is put on a ventilator until they are able to to breath independently. This did not happen to me.

All I could eat were chicken fingers and toast, if I ate at all.

After a few days of treatment I started to feel a bit better, but I did have some real struggles. I had to figure out how to walk properly without any assistance along with needing help getting up if I knelt down. During my treatment I was also told that I had Lymes Disease. This explained a lot considering the pain I was in on top of the pain I was enduring due to GBS. After 11 long days in the hospital I was finally discharged. At this point, it was decided that I were to medically withdraw from the semester and I would be graduating late because of it. I was extremely upset, but I knew it was best for my health. Because little did I know, just 7 days after leaving I would relapse. I ended up back in the hospital and was there for another 8 days. When I was sent home, I was given an at-home nurse who would administer treatment to my PICC line 3 times a week for 3 weeks (A PICC line is an IV that goes all the way through your arm into the top of your heart).The reason behind this was because my body needed more treatment than the usual 10 days. I received 29 days worth of treatment. Thank God for insurance!

My hospital bills were absolutely insane, but of course the majority of it was covered. My bottles of IVIG alone were about $20,000 per bottle. Sometimes I would have 2 bottles in one day. And again, I had treatment for 29 days...yeah I know. Anyways, it took me a very long time to adjust. Everyday was a challenge. I had a routine. On treatment days I would wake up early, receive my treatment for about 4 hours and have a shower. Simple enough right? Nope. Showering was the hardest part of every single day. I would be so out of breath afterward that I'd have to sit for about 2 hours to get back to normal. My mom would come upstairs as soon as I was done every day because she knew I would be crying. I can't imagine the heartbreak my parents went through watching their child go through this.

Me out of the hospital, but still receiving treatment. You can see the netting covering my PICC line (bottom left).

During my stay in the hospital and almost every day for a month afterward, all I kept telling my mom was that I just wanted to die. I wanted it all to end. It was the only thing I thought about. Eventually with some physical and occupational therapy, I gained some of my strength back and was able to shower no problem. This helped me gain some positivity back. Some things were still hard like walking up stairs. Even today this is a struggle for me. I do my best to make it through the days without complaining because 1. it is now much easier than it was at first and 2. there are many more people with worse problems. But I have to admit, sometimes the day gets the best of me.

There are some days I lay in bed all day long so exhausted that I just have no energy to even move. Or when it rains really hard, my joints hurt beyond belief. I eventually developed some pretty bad social anxiety. I isolate myself for days at a time and often wonder how much of a burden I am to my friends and family. Don't get me wrong, I have high and low days, but when they're low, it's hard to see the light at the end of the tunnel. I know my life will never be the same because of my diagnoses, but it's in many good ways, as well. For example, I found out about a year after my diagnoses about the GBS/CIDP Foundation. I regularly make donations and always organize a team to particpate in the walks close to my home. Because the disease is so rare, I never really meet anyone else who has it. These walks have helped me find a community that can relate. It's weird sometimes because I am one of the youngest people in the community. It's even less common to have this as a teen/young adult.

My face is red and broken out here because I had an allergic reaction to my treatment due to over-exposure.

Without GBS I wouldn't appreciate my life the way that I do. I try my best to stay positive every single day and I strive for a better outlook on life. I'm much more grateful for the little and simpler things. And I can empathize with people way more than I used to. On my 20th birthday, my first birthday after my diagnoses, I cried so much because a few of my greatest friends were there and both of my amazing parents. At one point, my dad told me "I didn't think we would be celebrating this day if I'm being honest. I didn't think we would make it." That has stuck with me in the best way. I know it sounds dark, but it makes me reach for more in life and take all the risks in the world. It's also a reason I came to Peru.

I have always been kind of a reckless person, but today it's even more. I don't mean it in a bad way either. I live life with absolutely no regrets, no care what others think of me, more spontaneity and passion. I've learned to live my life as if every single day were a miracle. Because really it is.

My tattoo of the symbol for GBS. My mom now has a matching one!

To finish, I'd like to thank my unbelievable parents for sticking by me through those dark days. My mom slept at the hospital with me every single night and my dad drove to see me every single day. I'd like to thank my sorority sisters that came to visit me, especially my big and to my friends who made the drive to see me, too. And if anyone from the ICU at Atlantic Care in Galloway, NJ sees this, I thank you for saving my life. Although I didn't have the best days there, I did have some amazing nurses who tried to make each day just a little better for me.

Love this life, love your friends and family, live in the moment and live in this miracle.

~Feed the Soul