Okay this blog has been super inactive, and I have made a big switch in my focus, which prompted a new blog.
I know i know i keep changing thing.
Here are the new places you can find me posting more regularly:
my blog dynamic has shift from focusing on solely running and it’s expanded to be more about the educations of life with Cystic Fibrosis, and my life journey in general, which includes lots of traveling!
I’m very excited to get this started, please give me a look and if you like what you see subscribe 🙂
Wish me luck,
I have been asked quite a few times over the past few months why I am running, and I have come to a point where I give the generic response that I want to be healthier. I’ve said that so many times that it doesn’t even seem to mean anything anymore. The reason I am running is because I have Cystic Fibrosis and my lung are failing me. I run because if I don’t keep trying to get somewhere I won’t become anymore then I already am. I run because I’ve lost two friends to this disease and I refuse to sit and wait to be with them again, I will run for them because they cannot.
I have always said that I would never put my name on a charity, that I could never raise money in my own name. It’s always felt like a dirty thing, like a selfish thing to me. What does it mean to raise money in your own name when there are people out their who have no one to do the same for them? When there are people who no longer have the ability to raise anything for others themselves?
I lost two people who I held close to my heart to Cystic Fibrosis. One was completely unexpected and the other brought peace to someone who had been long sick and tired. The hardest part of losing my friends to CF was that they were both younger then I was. Life just felt so out of order knowing that they’d passed and I would continue to live. They say in war when others die and you live you feel a survivors guilt, I can only imagine that is what it feels like.
I am so grateful for the time I got to spend with them and for the memories we shared. It is my goal to bring justice to their loss, and to put meaning behind it. I will do all I can to help cure this disease, not for myself but so no one else has to lose their friends, or their family.
The last year of my life has been a roller coaster. I started living a dream that was better then I could have ever imagined, and I let it be taken away from me. The hardest decision in my life came from leaving my college program with Disney, I made a decision to put my health 100% ahead of my career ambitions. I have been questioned about that decision, and i have regretted that decision but no matter how angry I get with myself for not being healthier then part of me will always be grateful that I made that tough decision. In the time I left Disney and came home for treatment my health continued to decline and it still is today. I’ve reached a point right now where I am not sure if I will be physically able to complete my marathon in a year goal. I have to say the anxiety that thought has given me is becoming more crippling everyday. It will break my heart if I am unable to accomplish my goal because I will have let myself down, and the people that I am running for.
While the anxiety is building and my hopes begins to darken I know that no matter how many miles I run or how many miles I don’t, that I will still be fighting for them every second. That I will be fighting for myself. I’ve spent a long time trying to be more selfless, and I spend a lot of effort trying to be a kinder person though that doesn’t always work in my favor. I no longer want to be ashamed to say that I am fighting for myself, that I am running just because I want to be proud of myself.
I deserve to be proud of myself.
It has been a long three days for me. The bad reaction I had to the IV antibiotics got really severe wednesday night, so I contacted my doctor again and he called me in for a last minute appointment yesterday afternoon. After running another PFT and looking over my symptoms and sputum test results he found that there had been no increase in my PFT’s and that I hadn’t really gotten any better over the past week. My most recent sputum test also showed that I have cultured staph in my lungs and given my history or lack of history with Staph the doctor was concerned that there might be more underlying problems that the medications were covering up. The last time I had a staph infection it ended up being in my medical chest port and then went into my blood, which is very dangerous and deadly. It didn’t only make my doctor nervous it made me nervous, so I was admitted into the University of Michigan hospital last night around 8pm.
I may be in the hospital, but with the help of the physical therapists I am back in training mode for the runs in the coming fall. I’m not doing anything drastic though, just a few laps around the floor but that is still more then I have been able to do in weeks. One of my other focuses in the hospital is on gaining weight. I’m currently about 20 lbs underweight, which my doctor isn’t to concerned with saying I will get it back when my health improves.
I am just taking baby steps to get back to a healthy enough place that I can focus on my future goals and ambitions, extending beyond just the runs in the fall.
Wish me luck!
Well my symptoms have only gotten worse as of today. I woke up at 5am to do my morning IV antibiotics and I could hardly make it up the stairs in my house. My mom insists that I should stop all medication until I can speak with my doctor, but I don’t want to hinder the recovery of my lungs and out of everything that right now is most important to me. I can suck up the pain and live with it for another couple days until my doctor can get back to me if I have too. The pain has gotten bad not only in my knee’s but also in my shoulders. I can’t lift anything over 5 pounds without my arms giving out. I am trying to take it easy so I don’t cause any tissue or joint damage, especially when I don’t know what is actually going on.
Now I mentioned that last week I was at Disney World so I have pictures and the story to share! I spent 5 days there with my Dad and my youngest sister Shelby (10). We had a pretty good time although I do feel like I missed out on doing a lot, the big reason for that was because I was just to tired.
If you’re interested in reading about my Disney journey including where we ate and what parks we visited check out the Disney blog I run with my friends! http:www.thedisneydolls.wordpress.com Not only will you find my adventure but if you’re interested in the Disney life you can find travel tips and all sorts of good information on there!
Now for some pictures! I will post some of my favorites, if you’re interested in seeing more pictures let me know. I will try to find some digital source to share them with you. I took over 300 so I don’t think they will all fit right here!
I hope you enjoy them:
Shelby, Dad and I
Port Orleans Riverside
Shelby and Pooh Bear
Dad and Shelby on Dumbo
I know it’s been a while, but I return baring gifts and by gifts I mean pictures! I spent last at one of my favorite places in the world, Disney World! We returned last Thursday afternoon, but I was beyond busy because I had to take my grandfather to the doctor the next day and we went over to Silver Lake (MI) for the Memorial Weekend. I packed all the essentials to go up north my laptop, charger, berthing machine, cell phone and then we arrive at our camp ground to find the wifi is nearly useless. I mean you can’t open google useless. I unfortunately have also been experiencing some complications with my breathing as well. It was quite the weekend.
It was around thursday or Friday night when I realized that I not only wasn’t breathing properly I felt like I couldn’t breathe at all. I had anticipated that it was from exhaustion of playing at Disney and that it would go away, but I have seen no increase in my ability to breathe. It’s terribly frustrating for me to admit when I am having a hard time. I am very much the person who puts on the brave face and pushes through the pain or complains about something much milder to give this illusion of better health. I admitted defeat to myself this morning and e-mailed my doctor with all of my symptoms and issues. I had an appointment scheduled for next week, but given the type of problems I am having he has asked me to come in tomorrow morning.
This is just a preliminary update, no fuss or anything to worry about. I am confident that I will overcome this hiccup in my plans, and that I will keep moving forward.
I did not want to include my beautiful disney magic, or the rather quirky story from my memorial weekend in what I feel is a somber post, so you will be seeing all that soon.
Wish me luck?
On my way to work this morning Imagine Dragons came on the radio with their song On Top of the World. A simple 3 minute song but it brought back so many memories of being at Disney. When I would drive to work I would listen to that song because it’s impossible to have a bad day after you hear it. I’d have my windows down and the radio up driving through the Magic Kingdom gates and around the look to the cast parking lot. Sometimes it would even make its way into my earphones as I walked through the lobby of the Polynesian and to the cast break room. That song is the sound track to my Disney college program. When I first heard the song come on I thought it would make me sad and miss the home land, but it did something completely different.
I felt inspired. I just met with an advisor at the University of Michigan in Flint and I have a good tracked plan to finish my Bachelor’s degree in a couple years and the song just made me realize that I will have the opportunity to return to Disney in the future. I listened to the lyrics of the song and I realized how well they coincide with my life and it brought me so much joy to know that it wasn’t just a song I listened to at Disney, it is a song that has followed my life pattern and is leading me somewhere better. I think all we can ask for as people is the opportunity to improve and life has a funny way of putting you in the position to be better if you just accept it. The song ended just before I pulled into work and it put me in such a good mood. Sometimes all you need in the morning is a good song, and everything else will follow after.