Being sick all the time has really put a downer on my life right now. I am not able to be "normal", and that has been really hard, especially because I just started high school. I'm in bed typing this right now because I have not been well for a while, and haven't made it to school. We have had to already change things with school because I am barely able to make it...so now I am doing online work. But, the nice thing is, I am still able to go to the school and do it there and have lunch. So, I am still going to be with my friends...and if I miss I have no worries. Hopefully this will make things easier. I am really sad to miss out on the full high school experience, and this is not what I planned to do or ever wanted to do, but it is best. Everyday I have texts from my friends, wondering if I want to hang out, or go to dances, or birthday parties. Most of the time I have to tell them we should do it another time or no. It breaks my heart, because I used to be able to do that stuff, but right now I am not well enough. And I can always tell that they sometimes wish I could be more involved in that kind of stuff, but the fact is most of the time I don't feel well, but I would love to go if I could. Luckily, I have the best friends in the whole world, who understand me, and get that sometimes I'm not able to do things normal teens do.
I have developed a new motto, from one of my favorite Disney Pixar movie Finding Nemo. Also, from one of my all time favorite characters, Dori. It is "Just Keep Swimming...Just keep Swimming!" That is all I can do at this point. Keep my head high and keep pushing through, and just keep on swimming. I have been in love with Instagram, and it helps me express myself through pictures, and quotes. Some of my favorite quotes I have found are these:
"JUST KEEP SWIMMING"Last month I had surgery again to repair my arm. Because of the first surgery, I had scar tissue trapping my nerve, so I didn't have feeling in my fingers. So they repaired that, and it's doing pretty well. I have had my transfusions like normal, every four weeks, and my IVIG every three weeks. These have given me a little boost of energy, but I still have gotten sick. About a week and a half ago my ears started to hurt, so we went in to get those checked out, and of course the first time the doctor said no they look fine, and then he said we'll just wait to see how they do. That day I was getting a transfusion so I thought that would kick in a little, but it hasn't. Then we went back in and of course it had gotten worse, and I now have a double ear infection. At the same time my foot started to hurt, the same foot that had MRSA in it while in the hospital. So just to be safe we got an MRI on it, thank goodness its not back, but we don't really know whats going on with it or my ears. They took blood cultures too, and nothing showed up, so we have no idea why this would all be going on. I have also had low grade fevers for a week and a half. Then I got IVIG on Tuesday, we thought that would kick in but again it hasn't...so we have absolutely no idea what's going on. I do know that I am in a lot of pain, and the antibiotics are not helping. I go again tomorrow to see what else we can do!
I have also done some speaking in public for both BeTheMatch and United Blood Services. Those were great experiences. I had a negative attitude going into both of them, and really didn't want to do it. I kept on wondering why do I have to do this. This is not how I wanted my life to go and not what I wanted to do with it. I quickly realized this is what I am supposed to be doing, and like it or not it's not going away for a while. My purpose right now is to do all I can for these associations...and I know by putting a face with an organization, it makes people want to donate blood or want to join the registry. Of course no one enjoys public speaking, but it makes a difference in peoples lives. And it sure has made a difference in mine. It has helped me to enjoy life a little more, and make the best of it. A lady came up to me after I spoke at BeTheMatch golf tournament and said,"if it weren't for you, I wouldn't of joined the registry!" Wow! I have made a difference in someones Else's life. And you know what, I sure enjoy that, and this is what I am supposed to do, and what I was meant for.
About a week ago I was having a really rough day, and at the end of it, there was a knock at the door. I opened it and a lady from my ward was standing there with a handmade quilt, my favorite thing of all time,some ladies in my ward had made for me. It was the best present I could have possibly been given. Thank you so much, I will always always cherish that. And you know who you are. It was amazing.
wow, this has been a long post, but I had a lot to catch up on.Also, on October 28, we are scheduled to be in Maryland at the NIH. My whole family will go out there for more testing, and for more info about transplant. Hopefully we can get good news and have a good experience.
Just Remember........"JUST KEEP SWIMMING!"