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,
So I took some time off for a wedding, but this week is going to be my redemption. I got back into walking last week and I was really discouraged because I was doing poorly and on top of that I really wasn’t feeling the greatest. Well I did something crazy to force myself into being more motivated and I signed up for an 8k this weekend with one of my friends from high school. We will be participating in the Crim Festival of Races 8k walk this coming saturday. The crazy thing is I also have a baby shower to go to that afternoon it’s going to be interesting weekend.
To get back in the swing of things I have been working on getting my distance back up. I did a 5k yesterday evening and I was disappointed when it was over an hour (1:05 to be exact). I set out this evening to do a 6k and while I didn’t meet the distance I did do 5k in 55 minutes! I was really excited to have it under and hour and shaving off 10 minutes over night wasn’t to bad. It gives me a lot more faith in my ability to complete my 10 mile run in October.
My favorite part of my walk this evening though is that I also had my fastest mile yet. It was a glorious 16:37. It might not be an olympic pace, but thats my fastest mile yet! It is so encouraging to see my time improving, it really lifts my spirits from the poor month i’ve had. It’s definitely motivated me to keep going!
Tomorrow’s goal is 7k, which 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.
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
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?
Okay so my walk today may be nothing to brag about, but this is the first walk I have tracked. Seeing a documented time for my walk makes me excited! I finally have a way to show my progress and really compare past to present, well future pasts to future presents. I don’t have any really fancy technology that I am using, it’s just a cheap little sensor that I got from Apple. It pairs with the Nike+ iPod app, and it only cost me about $15 to order it brand new on Amazon. I haven’t tested it out a ton with this being it’s first use I did notice a couple glitchy things with it, it didn’t start tracking my walk right away and it kept resetting the pace time to zero, but that all could have been user error. I’m just really excited to be making progress! I am sure with these little devises you get what you pay for, and while I would love to buy a fitbit bracelet I just can’t see spending the money on one as a beginner.
I went on my first real walk with my Dad and his dog Bear. When I told my dad about my intentions of running a combined marathon this year he told me that he would walk and run with me. Having my dad do this with me makes me excited! We get to make progress together, even though I anticipate it taking me longer to get to the finish line I know I will make it!
Hopefully tomorrow I can go on an even longer walk. I am starting with walking to make sure that I have the lung capacity built up before I attempt any kind of faster pace movement. It doesn’t take much for me to have a coughing fit and to get winded. In the past i’ve even encountered decreased oxygen to the point that my limbs started changing colors and going numb, so I’m working on easing into it.
I am hoping that this exercise will help increase my PFT’s (Pulmonary Function Test) they’re pretty low for me and have been since around november. My PFT the last time I went in for an appointment was around 33% it would be a welcomed miracle if I could get them into the 50’s which is where they were about 2 years ago.
To hopes for progress I say, lets keep moving forward!