Late night thoughts

Being chronically sick is a funny thing, no matter how sick I am there is part of me that always believes I'm going to wake up the next morning and be okay. I spend most of my days being "good" or "okay" fort he sake of other people, but I truly believe that someday I am going to be better. I've been in a weird limbo the past year because my health has kept decreasing, but I'm still convinced that I am okay so I make plans for my future. When I think of waking up tomorrow I never consider that it could be a bad day full of chest pain and shortness of breath, I always see a tomorrow where I can run and skip and just be okay.
It's a really weird thing to realize that I still see myself as the healthy(ier) me from my freshman year of college. I went through a lot of emotional stress my freshman year of college but my physical health was at a peak I hadn't seen and have yet to see again. I was not only exercising regularly, but I participated in outdoor activities with my friends, like playing frisby. I couldn't imagine being able to run after a little flying disk today without hurting myself. Part of me gets upset when I think about the things I was able to do then and how I can't do them now, but part of me is so proud of myself. I am so grateful to those memories and I hold them so close to my heart in the hopes of returning to a healthy place where I can run and play again.
I hold such a reckless sense of optimism for my future sometimes I question if I truly have accepted the means of my condition, or if I am keeping myself locked in a fairytale.

I am so desperate to be healthy again, I just feel like I'm running out of ways to get there.

Beginning Again: Work out #1

Last night I began my journey of training for my half marathon in May. I am really late and according to the training schedule that Disney has made I should be running 9 miles, and to be honest yesterday I had a hard time completing just one. I spent 30 minutes of my treadmill and managed a distance of 1 mile at 2.5 miles per hour. It isn't anything to brag about, but I am proud to have found the motivation to begin again.
After feeling like my efforts in 2014 were a failure I have decided to do my best to push that disappointment and continue running anyway. I spent 2014 running in an attempt to improve my health and by the end of the year I was worse off than when I started. I am hoping that I will still be able to improve my condition with this exercise.

It is my goal to be at a 5 MPH pace by the time I get to my first 5k May 1st. I am participating in the Expedition Everest 5k at Disney World with a good friend of mine. I am confident the 5k won't be a problem. Even the 10k the following week should be no problem. It is the half marathon I am most concerned with, and just the follow up of doing all of these things back to back.
I have 2 months to prepare for this 21 mile weekend, I am going to need your luck!

Past Due Unboxing Video and Chibi Tenshi Review!

I posted a haul video to my youtube channel some time ago, and I promised I would review the shopping service that I used! So i'm going to break down the cost of my order, and review the shopping service!

Here is the video if you haven't seen it:

Everything I ordered came from the Baby the Stars Shine Bright  Alice in Wonderland collaboration collection with Disney Store Japan.
I ordered:

Blouse (size medium): 5,292 Yen
Skirt: 6,372 Yen
Socks: 972 Yen
Clutch Purse: 3,564 Yen

I placed my order with the shopping service Chibi Tenshi on January 28th. She responded the 29th letting me know she got the order and she would order the items as soon as she could!
January 29th she e-mailed me again to let me know she was able to order everything except the skirt, but she said she would try going to the store to get the skirt.
January 29th She gave me the best news, she was able to get the skirt!
February 4th I was e-mailed the invoice for the order via Paypal
February 9th I got an e-mail letting me know everything was shipped
February 13th I received my package! It had to be picked up at the post office, but there were no custom fee's or anything!

The total order in US Dollars was $191.74
That includes The shopping service fee and all the shipping fee's, exchange rates and the Paypal fee.
I couldn't be happier with my order! I will definitely be using Chibi Tenshi in the future for any shopping service needs i have, and I recommend her as well.

As soon as I find a petticoat I deem worthy I will post outfit picks!

February Health Update

Unfortunately I am back in the hospital. I checked in on February 17^th, which makes it around a month since I was in last. I can’t remember a time when I’ve had such a short break between rounds with IV Antibiotics, but I am hopeful this will be the round that kicks my lungs back into shape and gets them working right again.

I had e-mailed my Doctor Monday morning expressing my concern over an extreme shortness of breath, and he called me in for an appointment the next day, and admitted into the hospital that evening.

My oxygen stats were holding around 92% resting, which made my doctor nervous.  My PFT’s were also down 4% from January to 30%. It’s really frustrating for the numbers to be so low, this time last year my PFT’s were in the mid to high 40’s and my oxygen levels were close to 100%. It’s hard to think that all the work I did training for the runs I have done haven’t had any benefit to my overall lung heath. 

I feel like I am running out of things to do or try to get better. At this point I am just really hoping that the Kalydeco for the Double delta mutation will be available soon. I really am hoping that will be a game changer in my life. 

I am going to keep working hard throughout this year to improve my lung function so I can have the option to pursue a long standing dream of mine that I thought I lost.

It's not going to be easy, but it's going to be worth it.

UPDATE: I was able to make it home on Monday February 23rd. I will be on home IV antibiotics until the 3rd of March at least. It feels good to be out of the hospital. exhausting though! I didn't realize how much I didn't move while I was in there.

Lets Start 2015 off right!

It’s finally happened; I am officially finished with the IV antibiotics for this round! I started IV’s on December 18^th and I finished January 16^th. It is a beautiful thing to be able to get a solid night’s sleep, and to shower regularly again. I also experienced something with my antibiotics this round that I hadn’t in the past and that is side effects. Usually when I am on IV antibiotics I am able to continue my life without much change other than my shortness of breath and coughing, but this time was different. I found that my energy level was always extremely low, and if I could I would sleep all day only to wake up for an hour or two and need a nap. It’s a really strange feeling going from feeling like you can do anything (even being sick) to feeling like you can’t get out of bed.

I was concerned about my energy level and I talked to my doctor and I was relieved when he told me that for the combination of antibiotics I was on that severe fatigue is common. My mind had wandered to the idea that I would be living the rest of my life exhausted, it’s a scary thing to face. I have only been off the medications for a day now, so I haven’t seen a real improvement on my energy levels but I am still optimistic. I am sure all I need is a few more nights of good sleep.

I am still super optimistic about the future! I am working towards some big goals to accomplish during 2015, some of those resolutions may just be happening and I can’t wait! I have two trips planned at the moment a very ambitious attempt at what is called a vacation but is going to be more of a work out than anything.  I will be traveling to Orlando Florida for the Expedition Everest run held at Disney’s Animal Kingdom Park on May 2^nd. I don’t have the official dates for that trip set in stone yet, hopefully a nice relaxing week of fun. And because you can never have too much Disney I will be traveling to Disneyland May 6^th – 11^th with one of my friends to complete the Pixie Dust Challenge. The Pixie Dust challenge is a Run Disney event that includes a 10k, and a half marathon run throughout the Disneyland Resort parks. My friend and I also opted to run the 5k the day before the challenge. It’s safe to say it will be a long weekend.  I also have a half marathon schedule in March, but I haven’t even started training yet. Hopefully I will be able to start walking and running again this week. I can’t wait to get my distance back up to where it should be and start working towards my running goals again!

I am really excited to start 2015 off on a healthier note. I hope to raise my PFT’s and my weight back to a healthy level again. It’s not going to be easy, but I know I can do it!

Hospitalization and The New Year

Check out my latest video, it covers my recent hospitalization and health problems as well as my goals for 2015!

Tell me what you think!

3 Steps Back

People constantly ask me what it’s like living with Cystic Fibrosis, or what it’s like to breathe with CF and those questions always puzzled me. I always stop and think about it and try to find the answers that I know they’re looking for.  When people ask me what life with Cystic Fibrosis is like I know they’re looking to hear the worst things, no one asks a question like that with the intentions of getting the highlights of my life.  After years of being asked and being curious myself I think I finally have a decent explanation.

One thing I’ve learned in the past few years is that as time moves on I seem to slow down.  It can be so easy to overlook CF from an outside perspective. There isn’t much that shows visibly for people to see, so it can be forgotten.  It happens quite often that I am left to follow because I can’t keep the same pace as everyone else. I fall behind a lot. For a long time I tried walking faster, but that only made things worse because then I would have to stop and catch my breath. I got into a the routine of just  falling behind, sometimes my friends would stop and wait for me to catch up, more often times they wouldn’t seem to notice my absence. It is fairly upsetting to think that you’re not worth the slower pace to others, that wherever it is we’re going is so much more important than the time we’ve taken to get there.  It’s a very isolating experience to see the value of your friendship reflected through people in this way, realizing that they may not even notice when you’re not there or they don’t even look back to see.

That is what it’s like living with Cystic Fibrosis, it’s like living three steps back. I spent a long time trying to keep up with other people, but that never really works.  I’ve learned to find comfort in my own pace; sometimes walking a little slower just means you get to enjoy the view a little longer. You really learn to let your senses override your thoughts and you get to notice and enjoy everything.  I know people say that life is more about the journey then the destination, but I think it’s more like a maze. You don’t know where you’ll end up until you reach the end.