Today has been a fantastic day! Yesterday afternoon I was discharged from University of Michigan Hospital. Now I will still be on IV antibiotics for the next couple weeks, but thankfully I can do them from home for now. Today I was able to go for my first walk in almost a week. I was nervous that I would have a hard time breathing and that I wouldn’t even make it to the end of the road, but I went a whopping 5k. I did struggle a little so my pace was a few minutes slower then normal, but it felt really good to be out and walking again.
I received the second bit of great news when I got home from my walk. Disney has released the bib numbers for the Tower of Terror 10 mile run in October. I am not the fastest runner and I was honest when filling out my estimated finish time. I couldn’t be happier to find that I have been placed in Corral I, which is the second to last corral. Now I don’t know how long the time between corrals is, but I know that the extra couple minutes that I will get is going to be the make it or break it between my finishing or not. I may have cried from happiness when I found out that I have a serious chance of finishing now.
I plan on training hard core over the next few weeks, and it is my goal to have the minimum 16 minute mile by October for the run. My fastest minute mile so far is just under 18 minutes. I was making really good progress before I got sick and I am lucky to be on a fast track to getting better now. I have a long ways to go ahead of me, but I know I will cross that finish line!
Wish me luck!
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:
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 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.
I was going to share my run from tonight tomorrow, but when I got home and plugged in my Garmin and realized how far I ran I was to excited to keep it to myself!
So i set out on my run tonight with the goal of running/walking 8 kilometers which I figured would wind up being around 4 miles. I haven’t run since last tuesday which I completed a 6.1 kilometer walk/run in an hour and 12 minutes. I went on vacation with my family thursday morning and I had full intention of continuing my run schedule, but I just didn’t. I took the weekend to enjoy the company of my family, both of my grandfathers were up north with my family as well as one of my cousins, so we just had a good time enjoying each others company. I have a few pictures from the weekend and some interesting stories so I’ll write a separate post about what we do over on Lake Michigan tomorrow! Anyway back to tonights run.
My First 5 mile run!
I completed my 8.1 k in 1 hour and 33 minutes, which is 5.03 miles! My average mile per minute is 18:35 which has been close to my average mile per minute. I did really well this run. I never really got tired or super exhausted, in fact it was just the opposite I felt really calm and zen like. I have been running the same path for a week now and I enjoy it! I did start my run later then I had wanted to, so I didn’t get back home until after 10pm which is a little to late for me. I am not super comfortable running at night so I will be trying to start earlier for my next run/walk.
I have been trying to run more and more, but right now I’m really focused on making sure I can complete the full 10 mile distance for my run in October. Once I hit 10 miles I will start training more for speed. My goal is still a 12 minute mile by november, i don’t really have a goal for the October run besides the required 16 minute mile. It feels so good to know that I have reached the hallway point for my 10 mile run and that my mile per minute has improved by 3 minutes since i’ve started running.
After my disappointing doctors appointment a couple weeks ago this is exactly the kind of positive boost I need to keep my spirits up! I can’t wait to keep running and see how far I can go! Maybe after I complete my Marathon in a Year I will be able to run a real Marathon in a day!
Wish me luck!
Last night I went out for my run. I planned on running around 7pm but I didn’t make it out of the house until closer to 7:30. My goal for the evening was to do a 5k. I started off strong in the first 1k of my run, maybe too strong. I was a little more optimistic about how much I could run and over did it a lot, especially int he first 2 kilometers. I am excited to start going farther though with every run! I got some great running advice from a fellow Cystic her name is Emily and she is the main runner and operator for the charity I am working for this year the Rock CF Foundation. She is an amazing athlete and someone I admire very much, having her support and advise is a big motivator for me to keep working hard to fulfill my goals! Her advise to me was to run four days a week alternating days and to work in strength training on the in between days. SO I have been following that method with yesterday being my first full run, on off days I do push ups, crunches and planks. I am not the greatest at actual work outs, so it’s going to take some getting used to, but I know i will get better at it!
Here are the Garmin stats from my 5k yesterday. I am really proud to have my fastest mile to minute yet it’s just under 19 minutes! I need to be at least at 16 for my run in october, and i’m hoping to get it down to 12 for my run in November. It’s not going to be easy, but it’s going to be worth it!
My goal tomorrow is to do another 5k maybe go a little farther. I don’t want to do to much to fast, and this 5k was pretty exhausting for me. I’ll keep working on it though!
Wish me luck!
After spending a week in the hospital I was finally able to go home yesterday afternoon. The best news that the doctors didn’t find and sign of outside infection. My doctor was really concerned after the symptoms I showed that I might have a blood infection, especially since I have a history of one, but all my blood work came back clean! They even got my med port drawing blood again. The doctors were also able to change my medications around and get my pain under control. I still have another two week of IV antibiotics, but I can finally see some results.
I was able to make it home yesterday around 5:30, but my mom and dad took me out to dinner in order to celebrate my return home and to give me a proper birthday dinner. My birthday was Tuesday and my family was really generous and came to visit me in the hospital and they brought me outback steak house for dinner! It was nice though to be able to go out to dinner with my family and enjoy some real food.
This morning we all packed up and headed towards Lake Michigan to our summer vacation trailer by the Silver Lake sand dunes in Mears MI. We will be here for another couple days enjoying kicking some sand and cooking out!
For the best news of all though. This evening I went on my first walk in nearly a month! I walked about a half a mile with my dad and his dog. It was so great, I didn’t have to stop to take a break or anything! I haven’t been able to walk like that in a long time! I am so excited to be able to get back on track in my training, and to keep progressing towards my marathon in a year.
Wish me luck!
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
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?