Most of you know me as a 15 year old sophomore in high school, doing school and other things, just enjoying life so far. However, in addition to the normal stresses and problems facing high schoolers, I’m also dealing with an incurable disease, which has changed my life completely.
This is my story, so far.
After coming back from Spring Break in my freshman year, I started having weird symptoms and pains that affected everyday life. I began work up for a rheumatologic disease. I continued to finish school, having to play softball on and off through the season, depending on how I felt. At this time I had fevers often, headaches, stomach aches, joint pains, muscle weakness, muscle pain, shortness of breath, chest pain, extreme fatigue, and dizziness as daily symptoms. But life kept going and soon school was finished and it was summer. I continued to go through many, many tests, and doctors. We began slowly ruling out one disease at a time, in attempt to find what was causing these problems by elimination. The doctor appointments were not fun, and the tests were painful a lot of the time, but I made it through. In the summer I tried to prove that I could still do sports and I was strong enough to continue my life the way it was, so I joined a hockey camp. On the first day I couldn’t make it past the first 15 minutes of warm up skating, and had to cancel all sports plans for the summer, and was banned from physical activity by my doctor. Soon fall came, and school again. Starting up again was rough, and I began missing a lot of school.
For my health situation however, it has been continually worsening and although we are closer to figuring out what disease(s) is attacking my body, we don’t know for sure yet. Unfortunately, being as we have no definitive diagnosis, no treatment or attempt for treatment can be given, just a few pain medications to try to help me get through the day. My symptoms have increased to, including the ones that I started with (which have also worsened considerably), now I have been losing weight, I lost my appetite, my gut can no longer process food correctly and I depend on medication to eat. When I eat I have awful stomach pains which can last a long time. I often can’t sleep at night, my eyes swell up and are very painful, I have difficulty swallowing food or water, my heart rate is often way above what it should be, my temperature now goes from a fever to being hypothermic, I have extreme Reynauds in my hands and feet, my lungs have been getting much worse, and I have muscle atrophy. I think that’s a pretty complete list.
I can’t explain how difficult it is to go to Cranbrook, to try to live a normal life, and to be struggling with a potentially devastating disease, knowing that there is a chance you might live through it. Every day is a fight to get out of bed, and I find I have to often force myself to suck it up and go to school. Life is complicated; there are so many different parts that make up your life. School, family, friends, your circumstances, and how you choose to live it. For me, slowly the different parts of my life, and what I thought made me, me, have been taken away. I have been banned from all sports, which were what I enjoyed so much, and I miss them completely. I’m not even allowed to do a push up. My grades, what used to be As, are now all falling consistently, which is hard to deal with especially when I know what I can do. I have also had to give up my instrument, and almost all social activities outside of school. I find I barely have the strength to make it through five days of school, and if I try to do extra things during the week, I can’t finish. As of right now, I have not made it a full five days of school since November. I have missed atleast one day each week. It’s crazy, and trying to make up all the work and catch up in class discussions and keep up with what we are learning is almost impossible.
I also struggle with even the easiest things. Such as, when I wash my hands, a lot of times I have to rest my arms on the sink because I don’t have enough strength to hold them up. When I go up the stairs sometimes I have to sit down half way up because my heart is beating extremely fast, I feel like I’m going to faint, and my legs are giving out.
Coping with the drastic changes and dealing with what my life has become is almost impossible it seems. Having such a normal life has turned into a huge challenge. By sharing this with you, I do not want to complain or get sympathy; all I want to do is encourage you. Life is unexpected, incredibly hard, and sometimes impossible, but enduring what comes and pushing through makes you the person you are. Never give up hope, and always press on.
Thank you for reading.