Weekend Up North

My family spends every other weekend and our trailer over by Lake Michigan. This used to be a place I went all the time as a child, but as I got older my family moved onto different hobbies and we stayed away from this gorgeous area. Last year my dad and mom decided to buy a Camping Trailer and they got a seasonal spot in a campground in Mears MI, or as everyone calls it Silver Lake. Silver Lake has a lot to offer. It has the gorgeous views of Lake Michigan, the quiet tranquility of an undiscovered boardwalk town, and the thrilling dips of the Sand Dunes.

This past weekend it was my middle sisters 13th birthday and her favorite thing in the world is cruising through the Silver Lake Sand Dunes. My dad has a 2012 Ford Raptor that he has souped up to be one of the baddest vehicles that hit the sand (yes i’m biased). Nothing makes my little sister happy like gliding across the sand and flying through the air. I have to admit she is far more fearless then I am, because while my need for speed is great my concern for the well being of people in smaller vehicles out weighs it.

We spent three nights at our trailer this weekend, hit lots of sand and for my first time this year I took a shallow dip in Lake Michigan. I thought I would share some of my pictures here because I took a lot and what is the use of a picture stuck on my phone for no one to see?

Dad and Adaline walking to the beach.

Dad and Adaline walking to the beach.

Shelby playing in Lake Michigan

Shelby playing in Lake Michigan

The coast of Lake Michigan towards Pentwater

The coast of Lake Michigan towards Pentwater

Sunset over Silver Lake

Sunset over Silver Lake

Sunset at the Top of Test Hill off the truck

Sunset at the Top of Test Hill off the truck

 

How far was that again?

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!

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.

 Run Summary 7/8/2014

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!

 

5K round two!

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!

Screen Shot 2014-06-30 at 7.31.02 AMScreen Shot 2014-06-30 at 7.30.49 AM

 

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!

 

 

Doctors Appointment update

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!

There is no place like home!

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!

I was getting restless in the hospital after a few days so I decided to create a video. I don’t make video’s very often, i get very nervous and shy trying to speak in front of a camera, but here we go! My own homemade hospital tag.

Finally on the mend

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!

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!

Sometimes you get the hiccups

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?