The following post is part of The Girl Behind The Blog series that details my story of illness and recovery starting in March of 2007. I believe that God created me for a reason and each experience I have can draw me closer to HIM and be used to encourage others. This post and those that follow in the series detail a pivotal moment in my life that changed me forever.
So what in the world was I diagnosed with and what did it all mean? Typically when I am making a new friend this topic usually comes up within the first or second iced tea or workout date together. If you have the desire and time to listen to all of this that is an indication to me that we are probably and most definitely going to be amazing friends.
After weeks of medical testing I was diagnosed with Guillain-Barré Syndrome (also known as Acute Inflammatory Demyelinating Polyneuropathy). It is totally a mouthful but sounds super impressive when you can pronounce it correctly (pronounced: ghee-yan bah-ray). I will try and explain Guillain-Barré Syndrome to the best of my non medical degree ability.
- Acute: a disease of rapid onset or a short course (as opposed to chronic or longterm)
- Inflammatory: the body’s protective attempt to remove the cause of injury and promote healing by causing pain, heat, redness, swelling, and loss of function to the area
- Demyelinating: a disease of the nervous system which causes damage to the myelin sheath
- Polyneuropathy: a serious, unpredictable, occasionally progressive, life threatening disorder of the nervous system
Guillian-Barre Symdrome is a very rare medical condition (only affecting 1 out of every 100,000) believed to be an autoimmune disorder. The nerves outside the brain and spinal cord are affected and often cause people to have some degree of paralysis. Each time the brain sends an impulse to the muscles, the impulse travels along the myelin sheath that covers the nerve. When the myelin in my body became damaged, the signal from my brain to my muscles became distorted. My brain could no longer communicate effectively with my muscles.
Weakness and tingling sensations in the legs are the first symptoms and can rapidly increase eventually leaving the muscles in a state of paralysis. It can take a few days to several weeks for the disorder to develop and there is no known cause. Usually symptoms appear after the patient has had a respiratory or gastrointestinal viral infection or has had a recent surgery. There is no known cure and the recovery period can last anywhere from a few weeks to a few years. While it is not as common there is a small percentage of patients who relapse years after the first attack.
My first treatment plan consisted of several weeks of high volume prednisone along with an anticonvulsant medication called neurotin. As much as I disliked the havoc the prednisone released on my body, namely a puffy face and major breakouts, I did start to feel somewhat better around mid June.
I was still off of work and on short term disability and getting ready to consider easing myself back into my job with my doctors approval, when I encountered a set back in my progress. I lost all feeling from my neck down. From there it gets pretty crazy. It is hard for me to believe everything that happened over the course of the next two years. Are you ready for the highlights?
For several weeks I had to move back into my parents house to be taken care of. My amazing and wonderful family. I can’t say enough about how supportive they were. Driving me to the doctors, bringing me food, bathing me, helping me get dressed, carrying me to the bathroom, and doing whatever they could to lift me up and encourage me.
My symptoms continued to worsen and I was referred to a neurologist whose subspecialty practice focused on neuromuscular diseases. I spent many hours in that doctors office, consult room, and treatment room. I was given more drugs and each month had two days of back to back treatments of Intravenous Immuno Globulin or IVIG to aid in my recovery. IVIG is composed of healthy antibodies from a multitude of donors. It is mixed in a bag and a tube runs from it to a vein in the arm. On the day of my treatments I would bring my iPod filled with movies and music to keep me occupied for 5 hours. Each day of treatment cost $10,000 and was covered by my insurance.
The human resource manager at my job told me over the phone that he thought I was making up my illness and that I must not want to return to work. He said it was highly suspicious for a person of my age to be plagued with the amount of symptoms that I supposedly had. Reading the newspaper a year later I let a smile spread across my lips when I read his employment had been terminated.
The sweet and wonderful man who married me during all of this was my rock. I don’t know how I would have survived any of this without him. I think back to our wedding and it was beautiful. God provided me with the strength I needed to walk down the aisle holding on to my Dad as we walked towards Josh.
Days after our wedding we learned that Josh had made it past the last round of interviews for the Mesa Fire Department. I couldn’t have been prouder of him.
In the fall of 2008, almost a year and half after my initial symptoms, when Josh was going through his fire academy I became very sick again and had to be hospitalized. My immune system was shot from all the medications and my body was on the verge of shutting down. I was hospitalized for a week and can remember my Grandpa coming to sit with me. I was in so much pain. Tears were running out of my closed eyes and I had no energy to even attempt to move or talk. I was so thankful at that moment for my Grandpa coming to sit with me, pray over me, and hold my hand. After I was released I stayed with my Grandparents while Josh went through his fire academy. I needed someone to be with me at all times. It is very humbling to have your Grandma give you baths when you are 24 years old. I was very thankful and so very grateful.
Medication is an amazing thing but the side effects can be nasty. Breathing difficulties, problems going to the bathroom, blurred vision, fatigue, and a loss of appetite were several of the larger complications that I encountered in addition to the paralysis. My weight went from 130 down to 110 and I was constantly exhausted.
I never returned to my job. My short term disability ended and I had to apply for social security disability. This is such a long story and seriously made me doubt the process that has been set up for those who truly need assistance. The paperwork took me weeks to fill out because my arms did not work and I felt so hopeless after 3 rejections letters. I was ordered to sit before a social security judge and tell my story, but this did not happen until almost 3 years after my initial diagnoses. By this time I had started teaching yoga and was well on my way to being fully recovered.
There is so much more I could tell you but hopefully this paints a larger picture of what when on in my life during this period of time. I love sharing this part of my life with people. Tomorrow please check back for my final post on this series. I will be sharing resources I used during my recovery and several lessons that I am thankful to have learned from this experience.