Thank you for visiting my "MG Walk" personal fundraising page!
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!
Here is my personal story:
Many of you know me, Carmelita, Carma, and or Dita. I began my journey with MG in 2006. I was only 23 when my symptoms begun to make its presence. I began having trouble pressing my lips together after applying lipstick, then the difficulty to close my mouth while chewing was impossible, shortly after that my vision began to become very weak, I had droopy eye lids that were so heavy I could barely keep my eyes open, then double vision, and lastly a weakened voice. These symptoms became apparent only as the day progressed, mostly in the evening, I thought I was losing my mind! One late afternoon I had very bad double vision and I was in attendance at a party, someone asked me if I was blind. I was so taken back by this comment. I replied no, but this person said I looked like I was blind. I looked in the mirror, and one eye was looking back at me while the other eye was completely turned up and all I could see was the white of my eye. I'm not gonna lie, I was freaked out! My husband looked as worried as I felt when he saw my eyes. I went to the ER 2 days later and was diagnosed a week after that. Two weeks after the intial diagnosis, I went into crisis. I was admitted into the hospital. I started high doses of Prednisone, Cellcept, and IVIG. Six months after that, I had a thymectomy. Almost a year later I became pregnant and I stopped all my medications. Sadly I lost my baby, after our loss I did not start my medications again and I went into a 6 year remission. In that time I got married, graduated from college, and finally had my little miracle baby, Yanabah.
After my 6 year remission, MG reappeared with a vengeance! I had no idea what I was in for, none of family did. After 6 years of remission, I forgot about my life with MG. This time around I was a mom and MG meant something totally different. My symptoms were much more difficult to deal with and I was scared! My breathing was affected greatly, full body muscle weakness was intense, and my face had a lot of weakness as well. My daughter was only 1 at the time this all started again, I spent days unable to hold her, care for her, I missed out on memories and milestones I'd hoped to make with her, being mom was not how I imagined it would be. At the same time, our time and memories together are cherished even more and that to me is a blessing. Working as a Pre-k teacher was becoming more and more difficult, eventually I had to quit my job. Everything in my life was changing because of MG. It was difficult, but we are still pushing forward.
I had my first real scare with choking and breathing a year after my symptoms began. I woke up choking so badly I could not take in any air, my body felt like it was shutting down, and I I felt like I was gonna pass out. I recovered and cleaned up, barely breathing. I cried myself to sleep and thought maybe I would not wake the next morning. When I did wake, I went to the hospital where I had a 5 day ICU stay and began IVIG again. I had many more ICU stays in the years following. I got Aeseptic Meningitis 3 times from IVIG. I also was on all the medications I was on when initially diagnosed. Currently I have infusions every 3 months
I remember the first time my legs gave out and I fell to the floor. I army crawled back to my bed and I laid there and wanted to cry but my daughter was home so I waited until I was in the shower that night. I cried mostly because I had no idea what was in store for me and with MG, I wondered how much worse could this get. The list goes on and on regarding the symptoms I have experienced over the past four years. Its been difficult but I am also thankful that I am here sharing my story with you all.
Without my incredible support system I would not be as strong as I am today despite MG. My daughter and my husband need me to push forward, if I don't continue to push forward I will have lost hope for all of us. They keep me focused on my future and their love is powerful and some of the only real medicine I need to get through the toughest of days. Thankfully my husband and I have some of the best parents in the world who help us whenever we need them. Our support from our family is tremendous, as well as the support from friends who feel like family that are right there with us when the time comes and we need help. All these people have taken care of my daughter while my husband had to work and I was bed ridden, or when he stayed with me at the hospital , making Yana feel so loved, they cooked meals for us, cleaned for us, held my hand, laughed with me, pushed me around in a wheelchair, and so much more. We are unbelievably blessed.
I am still positive that remission is in my future and am hopeful that there will be a cure in my lifetime. In the meantime I will continue to be part of the MGFA and our local support group. I am all about the TURTLE POWER! What the turtle represents to me is longevity, wisdom, and luck. Turtle Power has become my personal mantra over the course of the past 4 years and my love for turtles has been around since my earliest memories. I hope to see you all here at the walk. I am so glad that I was able to help put this together here in New Mexico. I look forward to seeing everyone in October.