Thank you for visiting my "MG Walk" personal fundraising page!
Please take a moment to read my story and understand why this is such an important cause:
On May 21, 2014, I went to my first appointment with a neurologist in Houston. I told this man every single strange symptom I had experienced off and on since 2009. Drooping eyelids, double-vision, shortness of breath, difficulty lifting my arms above my shoulders, difficulty walking, difficulty chewing food, difficulty swallowing food, nasal voice, extreme overall weakness. I spent less than 15 minutes talking to and being examined by this doctor and he gave me the answer I had been searching for over 5 years. He looked at me and said he knew exactly what I had and uttered the words: MYASTHENIA GRAVIS.
In 2009, I started having trouble keeping my eyes open because my eyelids were drooping. At first, I thought this was due to exhaustion because it usually happened at night. Double-vision started soon after and I saw two different eye doctors about it as it became more frequent. One did not respond to my questions at all and the other told me my eye muscles were weak which could be corrected by daily exercises. I agreed that my muscles were weak, but why? Between 2009 and 2010, there was a great deal of stress and transition happening in my life. I stepped down as the store manager of the Movie Gallery I had been working at for nearly 5 years; the entire company would close within a year. I finished my Associate of Arts degree. I quit my job altogether, started job hunting and moved out of my parents' house. I had started work rolling silverware at Chili's when my car was totaled. Immediately, I began working double the hours. Not long after this, I started to notice I was having trouble lifting buckets of utensils which I had not had difficulty with before. In 2011, I started working as a prep cook and my difficulty to lift heavy bags of potatoes or large lexans of salsa and pico de gallo became increasingly apparent. I started looking for work arounds to get things done. I'd use carts to move around things I used to be able to carry from room to room or I'd ask someone else for help. At home, I couldn't hold my arms up to brush my hair. I would prop my elbows up against a wall to use the brush. I was holding my hand over one eye while driving.
In 2012, I started dating Robert. My living situation had gotten weird and I moved in with him and his family not long after we got together. For my 27th birthday in December of 2013, Robert surprised me with tickets to see Celine Dion in concert in Las Vegas. The concert was great, but I couldn't see the stage clearly. I couldn't smile in our photos and I couldn't get out of bed for New Year's Eve fireworks. On the way to the concert, I nearly fell on my face because there was something wrong with my legs. When I was able to stand, my gait was so awkward that I was waddling. This was the second time this had happened to me. The next year was the worst of my life. I was now working two part time jobs: rolling silverware at Chili's and processing books for the county library system. Lifting a single book was impossible. I struggled to roll a handful of silverware when I could once roll over 300 in an hour. I could not sit up in bed and I could barely roll off it. All I could do was sleep, but I couldn't sleep through the night anymore and I never felt refreshed in the mornings. Robert had to help me bathe. I couldn't stand in the shower anymore and I couldn't wash my own hair. I had to have help getting dressed. Sometimes, when Robert was gone in the mornings and I had to dress myself, I would wait until after arriving to work to button my pants because my hands just couldn't do it until then. I don't wear shoes with laces anymore. I couldn't speak for any length of time without becoming short of breath and my voice becoming very nasal. I could only eat a few bites of any meal before losing control of my mouth. I would choke on my food because I had trouble swallowing. I lost somewhere between 15-20 lbs because I couldn't eat or move.
Everything began to change in February of 2014, when I became pregnant. I had recently started working full time for the county which meant I finally had health insurance. I scheduled an appointment with a doctor because I felt that as an expectant mother, I could no longer procrastinate about finding answers, especially if the baby was at risk. The first trimester was like death. The weakness I was already feeling was compounded by pregnancy. My obstetrician was the first doctor to really listen to me when I said there was something wrong and she gave me the name of a neurologist in Houston. I scheduled that first appointment and finally had that answer of Myasthenia Gravis at 16 weeks pregnant. He prescribed me a tiny dose of Prednisone and Mestinon. I felt nearly 100% like me again! I read that many women with autoimmune diseases experience remission while pregnant and I was lucky enough to be one of those women. I hadn't felt so great in over five years. My neurologist and my current obstetrician discussed my diagnosis and referred me to a high risk obstetrician. He took excellent care of me and on November 3, 2014, I gave birth to my son, Benjamin Everett. Without Ben, I would not be here. He saved my life.
It's been hard becoming a family of three in the shadow of Myasthenia Gravis. This disease has broken my heart in the moments when I could not lift my 7 lb infant or had to turn him down when he wanted me to pick him up. I lost some of the last good years with my grandparents (both of whom had Alzheimer's) because I couldn't get out of bed. But it has also given my life a breadth and depth it was missing. The lens I view the world with is sharper now. My family takes care of me on bad days and more importantly, helps with Ben. I have a job that I love with people who support me and through which I met another person like me with MG. I've found people across the world through Facebook who are in the same place I was or just plain understand exactly how it feels! That's huge.
UPDATE: The intervening year between the 2016 walk and the 2017 walk has brought, and will continue to bring, a great deal of change for me. I've lost both of my grandparents and I will be bringing a daughter, Vera Eden, into this world in November. Her arrival is due just two days before the Houston Walk, so I'm unsure that I can participate this year, but I hope that everyone will continue spreading the word about MG and walk in my stead.
UPDATE!!: I look forward to seeing everyone at the walk now that Miss Vera arrived this past Friday, November 3.
I am excited to be supporting the Myasthenia Gravis Foundation of America (MGFA) through the MG Walk. The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis.
MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
Please register to walk with me OR make a pledge to help me reach my goal!
Together We Can Make A Difference!