For Day #2 of World Rare Disease Month,
I will be addressing how my RARE illnesses have affected my life:
My life has been deeply and greatly affected by my chronic illnesses and especially the ones that are rare. My education has come to a halt. After missing over half of my freshman year of high school, I was forced to switch to a homeschooling program through my same school system for grade 10. At the beginning of my junior year of high school I then switched to an online school that I still attended in person as much as I was able too. It was for 4 hours a day where I sat in a computer lab/classroom and did my online work. It was set up this way for immediate access to any problems or help we needed (versus 100% online work, you email a teacher and could wait up to 24 hours after you ask for help for a specific question). I attended this school for my entire junior year. For my senior year of high school I was "still enrolled" in that school but switched to hospital-homebound instruction. When I was both in the hospital and out of the hospital, I had someone available to help keep me updated on my schoolwork and able to keep on track for graduation. In due time, I was able to graduate on time to keep my plan of enrolling in my local community college that coming fall. I started college this past fall, starting out as a full time student. After a short period into the semester, I realized there was no way I could manage both my physical health and the overwhelming amount of schoolwork required. So I dropped most of my classes and tried to finish out the semester with credits less than a part-time student. I finished out the semester with more failed classes than passing and realized that I could not keep on the same path I was on. So I'm currently at a stand-still with my education and my schooling and will try my best to return in the future!
Another part of my life that has been affected is working and holding a job. In late 2012, I got a job at a local craft store. After working for 3 months, I was forced to put in my 2 weeks. During the 2 weeks, I spent it in the hospital, unable to even finish out my job there. At the age of 16, I realized that because of my illnesses, I was unable to get a job. Still to this day, I am maintaining hope that someday I will be able to get a job again, even something small. I have a couple ideas for what I want to do as my dream job. Some of them include pediatric oncologist or pediatric mitochondrial disease specialist, with minors in child life specialty or ASL interpreting.
Many more aspects of my life have been affected by rare illnesses such as friendships, hobbies, etc... But no matter what may happen as my diseases progress, one thing that will never change is my hope. Hope that someday I will be able to manage my health in a way that is comfortable and allows me to be more me than I've ever been. Hope that someday I will go back to school and get degrees in what I want to do. Hope that someday I will be able to get a job again and love that I am physically capable of having one. Hope that one day, my rare diseases no longer affect all aspects of my life.
I will be addressing how my RARE illnesses have affected my life:
My life has been deeply and greatly affected by my chronic illnesses and especially the ones that are rare. My education has come to a halt. After missing over half of my freshman year of high school, I was forced to switch to a homeschooling program through my same school system for grade 10. At the beginning of my junior year of high school I then switched to an online school that I still attended in person as much as I was able too. It was for 4 hours a day where I sat in a computer lab/classroom and did my online work. It was set up this way for immediate access to any problems or help we needed (versus 100% online work, you email a teacher and could wait up to 24 hours after you ask for help for a specific question). I attended this school for my entire junior year. For my senior year of high school I was "still enrolled" in that school but switched to hospital-homebound instruction. When I was both in the hospital and out of the hospital, I had someone available to help keep me updated on my schoolwork and able to keep on track for graduation. In due time, I was able to graduate on time to keep my plan of enrolling in my local community college that coming fall. I started college this past fall, starting out as a full time student. After a short period into the semester, I realized there was no way I could manage both my physical health and the overwhelming amount of schoolwork required. So I dropped most of my classes and tried to finish out the semester with credits less than a part-time student. I finished out the semester with more failed classes than passing and realized that I could not keep on the same path I was on. So I'm currently at a stand-still with my education and my schooling and will try my best to return in the future!
Another part of my life that has been affected is working and holding a job. In late 2012, I got a job at a local craft store. After working for 3 months, I was forced to put in my 2 weeks. During the 2 weeks, I spent it in the hospital, unable to even finish out my job there. At the age of 16, I realized that because of my illnesses, I was unable to get a job. Still to this day, I am maintaining hope that someday I will be able to get a job again, even something small. I have a couple ideas for what I want to do as my dream job. Some of them include pediatric oncologist or pediatric mitochondrial disease specialist, with minors in child life specialty or ASL interpreting.
Many more aspects of my life have been affected by rare illnesses such as friendships, hobbies, etc... But no matter what may happen as my diseases progress, one thing that will never change is my hope. Hope that someday I will be able to manage my health in a way that is comfortable and allows me to be more me than I've ever been. Hope that someday I will go back to school and get degrees in what I want to do. Hope that someday I will be able to get a job again and love that I am physically capable of having one. Hope that one day, my rare diseases no longer affect all aspects of my life.