Tuesday, December 31, 2013
Today I came across a photo on Instagram of diet pills. The hashtag was #mybreakfastlunchanddinner. It made me angry. I used the same hashtag in describing my TPN aka IV nutrition. This person also said food was not needed. It made me angry because food is needed. Food is needed to survive. Food is good and I would love to eat food if I could. However I can't because I have Gastroparesis and food allergies. It is not an option for me to eat or not. Yet, this person is taking food for granted as I would cry just to have one meal that is pain free. I don't see how it is worth it to use diet pills daily instead of eating. There are so many of us in the world who are unable to eat food. Fed by an IV or feeding tube. I'm not lucky because I am so skinny. I would rather be fat and happy than skinny and starving. I wonder if this person would think I'm lucky because I am fed into my heart and can't eat anything? Not able to gain weight having countless hospital stays, doctor appointments, and surgeries...yeah I'm lucky alright! Lucky to be sick and starving 24/7. Maybe I would see this differently if I wasn't sick. I'm jealous of someone who can eat REAL FOOD!! She chooses not to eat. On another not diet pills are extremely unhealthy and you are more than likely to gain back the weight you just recently lost by starving your body of nutrition and taking these pills. It almost seems unfair. Like can I trade places with her and eat all the food I want to if she doesn't want to eat? Gastroparesis is a disease that paralyzes the stomach. Food and liquids will sit in my stomach for hours and not move until I puke it up or my stomach decides to function slowly. Learn more here: gpact.org. Even into my intestines my digestive tract will not work properly. This is why I am giving TPN daily so I can survive and receive proper nutrition without becoming malnourished. Next time you think about skipping a meal or several and taking diet pills. Think of me and the thousands of people out there living with chronic GI conditions that give our body the inability to take in food properly. You never know how lucky you are to eat food unless you are unable to.
"Never get mad at God for what He can put you through."
This year has tested my faith more than I will ever know. 2013 was definitely not my friend. It included several surgeries, hospital stays, and doctor appointments. I've been struggling a lot with everything that has been going on. I'll admit it is hard to trust God to take care of everything when it seems that nothing has ever gone right. It is something far beyond my understanding or anyone else's understanding. No matter what happens today, tomorrow or the next day. God's got this. He will save the day. My struggle is what makes me special and I am lucky God chose me out of everyone to live this fight everyday. No I don't like it nor am I happy about having to deal with this. Maybe he is just building up my strength for something even better. Something that is amazing and far beyond what I could ever expect. Look at the positives because of Him I will be okay and I just have to keep telling myself that. This fight is a battle that is so hard yet it is beautiful. My life is beautiful because it is turning out just the way God planned it to and he wants me to be thankful for all the opportunities in my life. Life is hard, yet it is so beautiful. <3
Friday, December 27, 2013
The Good Things
-I started at a new school and love it!
-Took a mission trip to the beach
-Made some amazing new friends
-Tyler's surgeon was able to reverse his ostomy and reconnect his GI tract
-I was confirmed in May
-I gained two more safe foods making our total three
-Went to the ACC Championship game!
-Was in our Children's Hospital Radiothon
The Bad Things
-I was diagnosed with Gastroparesis in September
-I need a central line to live and I'm TPN dependent.
-I am NPO
-Had six surgeries
-Lost a lot of my independence.
-Failed nearly 50 food trials
-Missed half a semester of school
Although life has not been easy this past year I've been happy with how things are going. I've missed out on a lot but also had some amazing opportunities despite my diseases. I am blessed beyond compare to have so many people's support in my life. I am praying that 2014 is a much better year for me health wise and I can't wait to see what life has in store for me next!
I believe in superheroes. My brother wears his superhero cape and mask around the hospital as it shows his strength and his courage as he fights this battle against Mitochondrial Disease. It’s a disease with no treatment, no surgery, no magic pill, and no cure. My brother, Tyler and I both have several rare, incurable diseases and this has brought a bond between us like no other.
I was twelve on April 16th, 2011 when Tyler had a seizure in my arms. I remember screaming for help, thinking it was my fault, collapsing on the ground crying with my younger brother, not knowing what was happening or if he would survive the night. Tyler turned blue within a matter of minutes and ended up having two seizures that night. Soon later he was diagnosed with Mitochondrial Disease and he is still showing the world what amazing things he can accomplish despite the obstacles that are in his way.
Since then Tyler has cheated death twice more making our total five times. Which is way too high for an eight-year-old boy! I will admit the facts and statistics scare me because I know I will probably loose my best friend but I pray every day a miracle treatment or cure will come. I just hope it comes and saves my superhero before it’s too late.
Over the weekend Tyler and I were talking while I was pushing IV medication through his Arteriovenous fistula and several things he said reminded me of the past. We were just having a normal conversation about something funny and then he said he had something to say. I listened and he broke my heart. I hate it when he says he feels lonely and scared. He told me how thankful he is to have me so he doesn’t feel so lonely because I understand the pain, the tears, the tubes, the wires, and the hurt. I started to cry. It’s not fair that an eight-year-old boy says he wants to rip his tubes out because it hurts too much. Sadly, this is the reality of Mitochondrial Disease.
Through everything that has happened we are both somehow alive today. I think it is because we have each other. Being sick has made us best friends ever since day one. I am proud to be his sister because he has shown me how to live my life a little differently than most do. Before I finished giving him his medicine the last thing he told me was “But life is just life, you know? Whatever happens, happens.”
Superheroes are supposed to sacrifice things in their life for others and that is exactly what Tyler does. Everyday Tyler could only care about himself and how much pain he is in. Instead, he puts others first including myself. It is just something we have always done since the beginning. Having two sick kids in our family is hard enough on our parents and siblings. They need a break just as much as we do. Even though Tyler is hurting so bad he takes the time to worry about them before he worries about himself. Tyler defines what a true hero is courageous, bold, and a fighter.
Friday, December 6, 2013
At fifteen years old most normal teenagers take care of themselves, make meals, go to bed by themselves, shower by themselves, and manage their everyday needs however that isn't the case for me. My disease has taken away my ability to play sports, go to school everyday like a "typical" teenager, to drive, to shower alone, to get dressed without help at times, to eat or drink, sometimes I am physically drained to where I can't even give myself my own medication, and to care for my daily needs. Most doctors and people don't realize that a chronic illness is more than just being sick and feeling ill. It's the emotional aspect of the disease. How you manage and cope daily. Do you think you could have all of your independence taken away from you at once? How about loosing your independence at fifteen and needing your mother to help you shower daily? All of this just ripped away from you at once...sometimes I think I'm handling it pretty well other times not so much. It is really hard I will tell you that. I always feel people forget I am only fifteen years old and trying to manage a "normal" life despite the conditions. You have nights where all you do is sit in your room and cry and cry and cry you don't stop, other times asking God why he chose YOU, and just being angry at everyone because you aren't "normal" in a world that is so hatred in those who are different. I start the day the war begins another day where I have that constant reminder I can't do this or that because I am sick. At the moment I am not entirely happy with the situation I'm in. I don't think anyone would be happy if they were me either. However this battle has only started and we have a long way to go to beat this! Maybe, my disease can stop me from doing all the things I want in my life but it can't stop me from doing the one thing I will always do. I will Never Loose Hope...and that is a guarantee.