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.
Yesterday I had a Doctors appointment at the University of Michigan in Ann Arbor. I am kind of sad to report that it didn’t go as well as I had hoped it would. I have been feeling really good since I’ve gotten out of the hospital and i had really anticipated my PFT scores being higher, but all in all nothing really changed. The doctor did take me off IV antibiotics though after being not hem for four weeks he said if I was going to see an improvement it would be there. My weight hasn’t increased at all, and my lugs still have a lot of crackles but the doctor seemed optimistic that getting back into the mode of running would help both of those things out a lot.
My PFT was at 32% and I am still pretty upset about it. I really thought it was going to be at least in the mid 30’s but it just didn’t work out.
I have to be honest I am pretty upset and disappointed. I really did everything the doctor wanted me to and I’m just not seeing positive results anymore. I am just not sure what I can do now to get the improvements that I want, and I am beginning to think that they just won’t happen at all.
Cystic Fibrosis is degenerative so I know that it is only going to get worse and at some point I will stop getting better but it is pretty fooling when you feel better but the tests say you aren’t. I just can’t help but question how long it will be before I don’t feel better either. All I can do now is just try to keep a positive outlook.
Wish me luck!
It’s been a couple days but I am back with my update from the doctor. All in all the appointment went better then I thought it would. I was afraid that with how bad my shortness of breath has been he would put me on oxygen but my O2 stats show that even being short of breath my lungs are compensating so my oxygen saturation is hanging around 95%, which is low for me but not close to any red flags.
My PFT’s however are down even more. Let me just say when I am standing in the little PFT room and I do the breathing thing and the guy goes “awesome, you did great!” apparently he means I put in a good effort, not that my PFT was actually good. I was very disappointed when the Doctor told me that my PFT’s are now down to 31%. The low PFT score wouldn’t bother be as much except for the fact my PFT’s haven’t increased in over 6 months. They have been going down when I am sick, and then just leveling off not increasing when I get better. Hopefully this time it will be different I can at least get back into the mid to high 30’s by mid June.
The medications I am on are Colisten and Cefepime, unfortunately for me I am already having side effects. The common side effects i’ve had previously were tingling and numbness in the mouth and teeth, but it is currently being extra tingly and numb. I am also encountering a constant bad taste in my mouth, which isn’t that bad just kind of annoying. The best side effect for the first time in nearly 3 years I can smell! By that i mean I can smell EVERYTHING. I lost my sense of smell a few years back after tackling a series of severe sinus infections. It is really strange to me to be able to smell things now, I hope this will be a permanent side effect, i like to smell things.
The worst side effect I am starting to experience is my joints locking up. When I was on IV meds in Feburary I had the same issue, it got so severe the Doctor switched my medications. Right now it’s only in my right knee and ankle, but the last time it went from both hips down and in my wrists and elbows. I can play through the pain so far, but the last time I wasn’t able to walk for about 3 days and I am really scared that it will happen again, I don’t want any permanent damage. I also don’t want to switch the medications though either, I am resistant to a lot of the medications that are normally used to treat my strand os Pseudomonas, so it would be nice to stay on the medications that are both sensitive.
I will be on the IV Antibiotics for the next 3-4 weeks, and if worse comes to worse I will restart all my training after that. I am confident that I still have enough time to make my 10 Miler in October and to reach my 13 Minute Mile pace. I’ll just have to work extra hard after this dose of medications.
I’m sure it will all work out for the better, but wish me luck!
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?