running for my life

Lets turn 10k into 10 miles!

I know I made the goal to do 7k the other night, well we got storms. So I set out on my mission last night around 7pm. I got to my usual turn around point and decided I would just keep going. It wasn’t long before I had gotten back to the cross roads and I decided instead of going back the way I came, I would go around the big block.

I ended my walk with a record distance of 10 Kilometers or 6.22 miles, and it only took me 1:57. That might not be the most beautiful time, but my average pace was around a 17:50 minute mile, my fastest average yet. The best part of this long walk, was that I really enjoyed it. I finally found a great playlist that keeps me energized and motivated to keep going.

My goal for the next week is to get up to 10 miles of distance. I want to spend the whole month of September working on my pace so that I can confidently go into my 10 mile run in October.

Here are a couple pictures from my walk last night:

IMG_0496

 

IMG_0494

This coming saturday I will be participating in the Flint Crim Festival of Races 5k walk. My dad and I will be doing it together, and I couldn’t be more excited! 

Wish me luck!

I’m Back Up and Running

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!

Lazy days ahead

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:

 

Cinderella's castle

Cinderella’s castle

Shelby, Dad and I

Shelby, Dad and I

 

Port Orleans Riverside Ferry Dock
Port Orleans Riverside

Port Orleans Riverside

Excited Anna

Excited Anna

Disney Quest

Disney Quest

Shelby and Pooh Bear

Shelby and Pooh Bear

Dad and Shelby on Dumbo

Dad and Shelby on Dumbo

dragon

Doctors Orders!

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!

Running for my life

As I am sitting at the edge of my bed reading over some run disney blogs a thought occurred to me. Accomplishing this Marathon in a year goal would change my life. When I left Disney and ended my college program early because I was sick I was pretty much devastated. That was the one moment in my life where I let my CF rip me away from an experience I had dreamed of for years. I will always look back at that moment and think there must have been more I could do to stay. I realize that was the moment my health just got away from me. I let Disney become the most important thing to me, and I left later then I should have because I was very sick by the time I made it back and into the doctors office. I go to the University of Michigan in Ann Arbor and my doctor is Richard Simon and he is so wonderful. I didn’t realize at the time what I had done to myself but looking back now I can see that if I had come back from Florida a week or two sooner my health today would probably be 100 times better.

I made my return from the land of Magic and my Pulmonary Function Test (PFT’s) were low, I mean mid 30’s which is down from my usual high 40’s and low 50’s. The doctor put my on IV antibiotics and I went home and took time off from working, school and I just relaxed. A week and a half went by and I saw no improvements so the doctor decided to switch some of the meds around and keep trying. I continued my IV antibiotics at home for another three weeks. I finally started feeling better, my attitude was more positive and I just had more energy I thought I was back to my baseline. I went back in for a check up and my PFT’s had done gone about 5%, which to me was horrible. I was mortified that there wasn’t more improvement, i always bounced right back after IV’s I just didn’t understand why i felt better but they were still so low. The doctor was happy that I felt well concerned about the PFT’s but decided that continuing IV’s at that point wouldn’t help the PFT’s improve, and the physical and emotional stress of IV’s would just have a reserve effect on me in the end.

I did pretty well for a couple weeks, but it wasn’t even a month before I was back down and sick again. I e-mailed my doctor and he wrote me a prescription for Cipro which is a standard CF Pneumonia pill, and I kept going.  It was February when I was put back on IV Antibiotics, which is a fairly normal schedule for me every three months. The problem was I didn’t have any time to feel better. The IV’s came and went three weeks later and I didn’t see any improvement. My PFT’s were in the low 30’s and my energy level was shot. Unfortunately I haven’t felt any kind of recovery since then.

I’ve been losing weight which a tragic sign of sickness in the CF community and that combined with my energy levels scares me to death. I have been sick many times in the past, but I’ve never truly felt sick. I have my days of complaining and hating life just like everyone else, but i’ve never been scared of my CF before. I believed for the longest time that I didn’t have a can do attitude, i had a will do attitude and that it pushed through the obstacle that stood before me sick or not.  I let my CF get the better of me and it is taking a lot of work to get that attitude back, and this goal is going to be a big part of that. I was so used to coasting ahead and now I am battling just to keep my place in line, I am determined to win. I am determined to be better.