I guess I've been stuck for awhile. All I'm doing is waiting, when I want to be doing SO much more. At first i was okay, I was strong, and had the wisdom to know that it's all okay. But lately I've burnt out, that's one way you could put it. Waiting is so hard. And, what I'd never realized before, it's exhausting. What really sucks though is when you're waiting for answers, and you know those answers might not be what you want to hear, what you've been hoping for. We all hope for the best, the better outcome, but it's not always what we get. I'm at a point however, where I'm pretty much hoping for bad news because it would be an answer. and it will end this awful state of waiting. I find myself unable to picture the future because I have no idea what is going on in there (my body). Dealing with the loss of control in my life is beyond difficult. We all feel safer, happier, and much more relaxed when we know and are able to decide what we will do today, or tomorrow, or the next year even. But it seems my life right now and everything in it is being chosen for me. When this first began, I fought it. I played sports, I did all I could to live the life I did before. Now, I've kind of accepted things. I'm learning to accept the fact that certain things I had before have been taken from me. I no longer struggle to keep them in my life. I do not see this as giving up however. Yes, there have been times when I have given up, those nights where all I want, with all my heart, is for it all to go away. I long for everything the way it was. But no, each time I have gotten back up, somehow, and am still fighting; but in a different way. I'm not fighting the inevitable, I'm fighting to still be me. To have control over my attitude, to make the best of what I am blessed with. I fight to try to give those I love peace to know that I'm not suffering, I'm fighting, just in a silenced way.
Saturday, April 14, 2012
Do you ever wonder sometimes, why you were chosen to live this life you do?
That thought occupies my mind more than often.
Each of our lives are so different, so unique, it takes one exact person to fulfill what God plans to do through it. You were created exactly for that purpose. But when things happen, problems come and hope doesn’t seem to be close, how do you expect to get through things? Why were you given that life to live? Can you just give up, please?
I wonder why God thought I was strong enough for something like this. Why he thought I was right for this. The longer this goes on, the harder life gets, the more I realize how imperfect I am, how much I really do struggle, and how dependent I actually am. You begin to wonder what good can really come out of anything such as this. You seem to be a burden to people, now your problems are not only affecting your own life, but those around you. I guess that’s the point where you have to decide whether you are going to affect others for good, or for worse. Recently I have been struggling with how to be right. I guess what I mean is, there are a lot of different ways you can take the circumstances I have been given. Sometimes when I think about my future, I can’t get past the next few hours because I just straight up don’t know what will happen. But what I do know is how to be right in the present. I believe planning on being right in the future while ruining the moment you’re in is not the way to be right. It has taken me longer than I imagined to figure this out however, and I’ve made plenty of mistakes that way. I’m not sure where I’m going with this, to be completely honest, but I guess the point I want to make (okay well the first one) is that don’t worry about what’s going to happen tomorrow, or next week, or in a few years. When you spend your time and energy doing that, you neglect the present, which often times is the most important.
Also, have a little faith. As hopeless or wrong as life may seem right now, you don’t know what is in store for you. There are plans for your life that are beyond what you could ever dream or imagine, so keep on going, and be strong.
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus through-out all generations, for ever and ever! Amen." Ephesians 3:20-21
Friday, April 6, 2012
Tuesday, April 3, 2012
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.