Founder/ Administrator, Ms. Amanda M. Krzywonski
of My Life as Mandy… with Epilepsy
Phone calls are currently not permitted without
request. If you have any concern regarding making a donation, sponsoring, or
anything of that sort, please refer to my e-mail address and you can request a
phone call or mailing address from me that way.
About
Well, where do I start? First off, I want to say hello and welcome! Thank you for visiting, and I hope you will be coming by more often!
Just to tell you a little about myself... My name is Amanda M. Krzywonski. I prefer to be called "Mandy," because Amanda sounds too old for me! I also commonly go by the name EpilepsyBlogger (hence the name of the website, Facebook page, and Twitter), so don't be surprised if I sign off my blog posts with that name instead of my own. I will be 19 years old on April 21st, 2012 and I am from Colorado Springs, Colorado.
When I was just a little girl, I knew there was always something "different" about me. I wasn't the same as the other children on the playground at school. My mind didn't "work" the same. I saw blurry visions of colors, got lost in what I thought were "daydreams," and felt as if I had been absent for minutes at a time. I had severe headaches every few days, but no one ever thought it was serious. I never knew exactly what made me different, or when I would find out what it was, but I just knew that I was special and that someday I would make a difference in this world.
When I was 12 years old I became very ill for unknown reasons. My hormones were out of wack, I had headaches constantly, and I felt fatigued throughout each day. My doctors discovered a pituitary adenoma, in which they blamed many of my problems on. The rest, they blamed on migraines. I was forced to be homeschooled my 8th grade year of middle school because I was too sick to go to school. I ended up being partially homeschooled for all 4 high school years as well.
When I was just turning 14 years old I had a grand mal seizure. I was in my old best friend's car on the way to her basketball game when it happened. I don't remember a thing except for hearing the voice on the radio repeat, and having doubled and tripled vision. Next thing I knew, I woke up on my front porch getting yelled at by my parents who assumed I was being your normal teenager and experimenting with drugs.
These instances continued, and my parents realized that it wasn't a drug addicted child that they were dealing with. Later that year we found out that many of the problematic experiences I was having were not just migraines and were not caused by my benign pituitary adenoma - they were seizures. I thought seizures were just people flopping around, wide awake and fully conscious. I had never seen one, so I didn't know what they were. Nor did my family.
I can remember some types of seizures, after I learned what they were, occurring even back in Elementary school when I was as young as 8 years old. I never knew what they were, and they were not prominent enough to be noticed by my family, friends, or teachers.
I complained of these happenings often. They were always confused for eye problems, hormonal issues, regular headaches, or shrugged off as they didn't seem too important. Therefore, I consider myself to have had Epilepsy all of my life, but I wasn't officially diagnosed until I was 14 years of age. I lived my life getting used to them, which is what makes dealing with many of my seizures so easy today.
I didn't "suffer" with Epilepsy until age 14. Many of seizures I had as a child were not painful. They were scary at first, but I eventually learned to live with them, thinking they were a normal part of growing up. However, when I started having grand mal seizures, my thoughts on Epilepsy changed completely. I was terrified to leave home.
They were painful. The seizures took control of my body and brought me to the ground. Most of my seizures happen in the shower. They start with a funny taste in my mouth, which would lead me to scream as if I was being killed so that my parents would hopefully hear me. I would wake up naked with soap in my eyes and blood all over my body. My father busting open the bathroom door to carry me out of the bathroom to the EMS. This is not the ideal life of a 14 year old girl.
I was implanted with the Vagus Nerve Stimulator at age 17, which helped slow and suspend the grand mal seizures to a point. It also led me to start my popular blog 'My Life as Mandy...with Epilepsy'. From there my work expanded as I met other bloggers around the world, volunteered for Epilepsy Foundations, opened up Facebook pages, etc. I now reach over 104 countries around the world and I hope to expand even more as time goes on.
Although my seizures have not been controlled and I am still on medication, I have learned to embrace my condition. The volunteer work I do, and the online work I do through my blog, website, and webpages has shown me how blessed I really am. I've met so many amazing people, done so many amazing things, and I hope to make this a full-time effort when I graduate from college. There is a way to break the chains of this condition aside from pills and surgery, and my goal is to help others see Epilepsy through my eyes.
Aside from all the work I do for Epilepsy, I have tons of hobbies and things I like to do for fun. I am a local artist here in San Antonio, and I absolutely love to paint and sculpt. I am currently painting a piece for Terry Tracy, the author of 'A Great Place for a Seizure'. This opportunity is truly an honor as her book was phenomenal, and the piece is expected to be finished in the next four months.
I am a freshman in college attending Texas Tech University. I am taking my classes online at the moment, until I feel comfortable living on my own. Right now I live at home with my mother, father, two sisters and brother. I have been dating an amazing boy named Rafael for a year and three months now, and he is such a blessing to me. Let's not forget my 3 year old Australian Shepherd, Rudy and my 5 year old Chihuahua, Mia. They're family too!
I could go on forever and ever and ever, but I'll let you read the blog so you can learn more about me! Be sure to check out the other pages as well. There's something for everyone!
