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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
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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?

May the Fourth Be with you!

The past couple days have had there ups and downs, and I am happy to report that I have been walking! I went for a walk this past Wednesday and my Nike+ sensor just quit working on me so I made a split moment decision to buy a Garmin 110. I ordered mine through Amazon it was roughly $130.00 but I was super excited to make the investment in my running future. I received it saturday morning and of course I had to charge it and use it right away! Well after using it tonight on my longest walk yet I am pretty heart broken to report that it quit working, to say that i am disappointed is an understatement i think terms like pissed off are more accurate. I asked around for a bit before I made my purchase and everyone seemed really happy with Garmins and told me that they are really the only way to go for serious running, so I am hoping that this can get sorted as quickly and painlessly as possible. 

What am I most upset about? That all that data from my walk tonight is lost. No I did not reach my 5k goal, but I did go on my longest walk and now it is just non-existent. In all I can’t if I am more upset that this Garmin let me down, or that I feel i’ve let you down. I’m not really upset for not meeting my 5k goal, tonight I walked (with my dad) 2.15K and I was exhausted. I completely underestimated how long 5k is, so I am rescheduling that 5k goal for this coming sunday. Now that I have abetter idea of what kind of a distance I have ahead of me, I think I can accurately tackle my goal!

My bigger goal for tomorrow is to figure out what is wrong with this Garmin! Hopefully to get it on the track to working again. I don’t by myself nice things very often, I have been trying to make a change in that. It’s hard to change when you spend a lot of money on yourself and it just falls apart in front of you. I am confident it will get fixed though!

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.

some nights you just need a hug

This will just be a short update of the past couple days because it is after 1am here and while I have nothing to wake up early for I am not usually a night owl.

I’ll admit i haven’t walked in two days. My excuse for yesterday is that the house was a bag of cats! My dad left for Australia this afternoon and they were making sure everything was situated for that. So far he is safe in Los Angeles his flight leaves soon for Australia and then he will be back in a week! I admit my Dad being gone on international flights like that makes me nervous. I am a Daddy’s girl 100% and I just worry about him.

My excuse for not walking today is less of an excuse and more of a real reason. I was having a hard CF day. I haven’t slept through a whole night in about 2 months and the lack of sleep is just crashing down on me, to top it off I started running a fever of 102 for reasons unknown. I just relaxed and laid on the couch after I made dinner, I’ve done the whole ignoring your sick thing and that does me no favors. I had a goal today to walk a 5k, but I think i’m going to extend that to by the end of next week and since I am adding extra time I will add that I want to do a 5k in an hour or less by Sunday May 4th!

My dad and I did go on a walk wednesday though! We’re going farther and faster which is great! We did .94 miles in about 30 minutes. That may not seem like the most impressive time, but I am proud to be able to go that far. It is so exciting to me to see even the slightest improvements and I can’t wait until my 10 mile run and half marathon!

I would also like to put a shout out to a couple of my best friends Hillary, Jen and Kayla! When I have bad CF days I tend to complain a lot, but they’re always right there to offer a hug and listen to my griping. I try not to talk to much about my Cystic Fibrosis because it can be annoying and hard to listen to and even hard to understand at times, but they always offer a smiley face and comforting words.

So readers if you’re out there, I am always here to be the hug you need on a bad day.

You have to walk before you run

Image

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!

The Disney effect

The Mouse and

On my way to work this morning Imagine Dragons came on the radio with their song On Top of the World. A simple 3 minute song but it brought back so many memories of being at Disney. When I would drive to work I would listen to that song because it’s impossible to have a bad day after you hear it. I’d have my windows down and the radio up driving through the Magic Kingdom gates and around the look to the cast parking lot. Sometimes it would even make its way into my earphones as I walked through the lobby of the Polynesian and to the cast break room. That song is the sound track to my Disney college program. When I first heard the song come on I thought it would make me sad and miss the home land, but it did something completely different.
I felt inspired. I just met with an advisor at the University of Michigan in Flint and I have a good tracked plan to finish my Bachelor’s degree in a couple years and the song just made me realize that I will have the opportunity to return to Disney in the future. I listened to the lyrics of the song and I realized how well they coincide with my life and it brought me so much joy to know that it wasn’t just a song I listened to at Disney, it is a song that has followed my life pattern and is leading me somewhere better. I think all we can ask for as people is the opportunity to improve and life has a funny way of putting you in the position to be better if you just accept it. The song ended just before I pulled into work and it put me in such a good mood. Sometimes all you need in the morning is a good song, and everything else will follow after.

Alarm Clocks, College meetings and Super heroes… Oh my

Do you ever have those nights where you think, okay i’m going to bed early to catch up on some sleep, I don’t have to be awake until 10 tomorrow and I’m going to sleep through it all! But then you wake up around 5:30 because you sleep in the basement and someone is awake up stairs, and then against at 6:30 because you were a moron and didn’t turn your alarm off, and yet again at 7:30 because you have a panic attack that you over slept and missed your 11:30 meeting? Well it was that kind of a night for me.

After trying to calm myself down for a few minutes and go back to sleep yet again I gave up and decided to start the day. I stuck with my usual morning medication plan and decided to switch it up after that. I had been meaning to try getting into some kind of after wake up stretching routine and I thought yoga might be a good thing for me. I googled beginners yoga poses (because i’m not daring enough for anything further then that) and I started to test them out. Having Cystic Fibrosis working on breathing exercises is important for me and my past as a singer (college nothing professional) to really take the time to breathe deep and properly. I thought I would do great at yoga, i have a pretty good sense of balance and flexibility range and I’m always looking to improve both of those.

I started out with the Mountain Pose (I hope i get these names right). I found it a bit difficult to breathe in deep being so outstretched but who doesn’t love a good stretch? So I kept going and then moved into the Warrior. Now this pose is my favorite I mean probably because it’s the easiest but I also really enjoy the leg stretching too.I am going off Fitness.com for these poses and all that and they say hold each side for 1 minutes. I was doing pretty good on my first side held out the full minute but I started to notice that my breathing was way to shallow on my second one. I took a minute to compose myself before I moved on and then I gracelessly moved into the tree pose.

The tree pose was more of a challenge for me then i thought it would be. I can balance on one leg pretty well, but putting my arms up threw me off balance every time. The longest hold I had in this pose was maybe 30 seconds probably closer to 15. I couldn’t relax in this pose either, it just made me frustrated so i moved on.

I went into the triangle pose more confident because it reminded me of the warrior one and I knew I could handle it, well I thought I could. I started out with the right side and it only took a couple of seconds before I had a searing pain in my chest. Now any intelligent person would have realized they reached their cap and stopped, but I however was determined. I held each side for a full minute, and by the time I was finished my lungs thought I was being stabbed in the ribs.

Still being stubborn and refusing to give up I did a final pose called the child. I will say this one is also a the for being my favorite because it was so relaxing and soothing I could have fallen asleep like that.

After my war with yoga I felt like I had run a mile. Who knew such simple stretching could make your body so angry? As I mentioned previously I did have a meeting at 11:30 today, it was over the University of Michigan in Flint with my new advisor! I am very excited to say that I now a visual communications major at U of M. I can’t wait to start classes at the end of June and to complete my Bachelors degree and move into a serious career. After my successful meeting I returned home and met up with my mom and we went shopping for Easter dinner on Sunday. I have the joy of making a Prime Rib (my first). I think it’s safe to say (without offending my mother) that I am the chef of the house. I enjoy cooking and creating new dishes and experimenting with flavors, it is a passion for me! After all everyone needs to it right? So it should all be delicious!
I even made dinner this evening. I prepared a marinaded and grilled flank steak (another first for me) with sliced grilled potatoes and steamed green beans. I was actually surprised when it turned out to be really good, being my first flank steak I was scared it would be tough but it was fantastic!

Right from Dinner one of my good friends Travis picked me up and we headed off to the movies! He really wanted to see Captain America: The Winter Soldier and while I admit I seen it opening day. I always jump at the opportunity to see the Marvel movies in theaters, no matter how many times I’m repeating. Oh and if you haven’t seen the Winter Soldier go, drop whatever you’re about to do and go, I’ll still be here when you get back. Movies is another passion I have. I love everything from the acting to the set design and the film scoring. I was determined to be a film score writer at one point and it’s still a buried dream that I have, you never know right? I actually have a pretty extensive collection of movies though most are Disney movies, I love collecting new titles.

That was my day which all leads up to now, which i am sitting on my bed typing this out in the silence. My sore chest led me through the rest of my day, I am hoping it will subside so I can get the sleep that I lacked last night! I rightfully set my alarm for 6:30 this time though. My goal is to be to work by 8:15. The earlier I get there the more hours I can collect, and with all these Disney trips coming up I am going to need ever second I can get!

Wish me luck!

P.S: I plan to start my running/walking adventure soon, we got snow the other day and today was the first day we got over 41 again.

 

A day in the life

I was hoping tonight would be the night I start exercising and walking but we got our first thunderstorm of the year! Which consisted of 75 MPH winds and an inch or two of hail. The winds knocked out the power and we are in high alert of falling tree branches so over all we’re keeping it inside. I’ll start my journey tomorrow!

Instead of hearing a riveting tail about the mile I didn’t get to walk I’ll give a brief overview of a day in my life. My life isn’t bursting with thrill and adventure on the daily, but it will help give an idea who I am and hopefully inspire me to make the changes to keep being better!

Lately my sleep pattern has been a mess. I only get a handful of hours of sleep if i’m lucky, I have a hard time laying at any kind of slant because I can’t breathe and I will start coughing.
I wake up in the morning between 8:30-9:00am on average and the first thing I do is my morning albuterol treatment. If I try to get out of bed before doing my first breathing treatment it will take me about 20 minutes of recovery because I just can’t breathe.

After that is finished I go upstairs to get my second breathing treatment (Pulmozyne). I usually grab a water from the cupboard and then head back downstairs to finish off my morning treatments. After I do my second breathing treatment I do my vest. Now the Vest is basically what it sounds like, it’s a vest I put on that connects to a machine that allows the vest to inflate then it shakes at frequencies I control. The shaking motion helps to break the mucus off the lungs of my walls allowing me to cough it up and making breathing easier. I do the Vest for two 10 minute sessions, one shaking fast at a lower pressure and one at a high pressure shaking more slowly.  My morning treatments take about an hour, they can’t be done together or out of order or I won’t get the best benefit from them.

I admit while doing my morning treatments I usually scope out Facebook or watch morning cartoons (somethings you never out grow).

Usually after my morning treatments I do my homework. I currently attend online classes at Iowa Central Community College, I am taking Math for Liberal Arts and it is my last class before finishing my associates degree! I have 6 weeks left and I couldn’t be more excited to get it behind me! Math class can take anywhere from 15 minutes to an hour. I struggle greatly with math and the frustration provides me with a great desire for distraction which I cave into often.

After math I freelance. If it is a week day I might go to work. I work part time in an office and there isn’t always work for me to do so I don’t work everyday (to my dismay). On days I don’t go to work I do nothing, nothing productive at least (this is what I’m hoping to change). I could give a thousand excuses as to why I do nothing or what I’m really doing, but I hate excuses and it wouldn’t amount to much.

When the clock strikes 11:00am (if i’m not at work) I will go out to lunch with my mom. If you notice I didn’t write about breakfast and that is because I don’t usually eat it. Lunch will consist of anything in the Linden/Fenton/Flint area and is usually something we’ve both had a hundred times even though we’ll spend 10 minutes stating all we want is something new.

Lunch comes and goes and my mom and I usually make a trip over to the local grocery store to pick up any last minute things we may need for dinner. Dinner being whatever sounds good to most of the household granted we all have different tastes and ideas of what is good (me being the most picky it seems).

The grocery store becomes a speck on the rear view mirror as we make our way home. We’re welcomed home by our dogs Bear our Keeshond being the most eager to see us after he stops barking because he realizes he knows who we are and our other dog Christy being only excited because it means she gets out of the house away from Bear. The cats in the house don’t care if we come home at all, unless they’re outside and need to be let back in to get a drink, because the lake across the street isn’t good enough for them.

The welcome home gets overstayed and the family pets quickly become bored of our return and move on to their much more exciting lives and then it is just my mom and I waiting until she has to pick my sister up off the school bus. We usually watch Roseanne, that is one of our favorite TV shows. She has seen every episode and I’ve only seen a handful, but we always joke about how our family is similar and how realistically funny it is. She usually leaves to pick up my sister after a couple episodes and I head off to do whatever it is I do which for the second time that day seems to be nothing.

The one productive thing I do is another Albuterol treatment. It’s usually around this time I start having a hard time breathing again and need the extra boost. Other then that I really couldn’t tell you what it is I do. It is a combination of Facebook games, chatting with my friends and taking buzz feed quizzes because it’s important that I know which vegetable I am. I don’t understand how I can spend hours doing it, but I do. It’ll be around 4:00pm when I go back upstairs, I usually have to help make something for dinner, or just make dinner itself.

Dinner ends and sometimes there is dessert to be made, but I don’t eat sweets or most of those kinds of things so I just go back to my room downstairs.
It’s a few more hours of chatting with my friends and the same ole nothing as before. It is around 9:00-10:00pm when I venture back into doing another Albuterol treatment and the Vest again. I do the Vest again for two 10 minute sets. I have to stay awake for at least another 30 minutes after doing the Vest. If I try to lay down too soon all the mucus that I just shook free will choke me. The extra 30 minutes is usually enough time to cough up all the extra stuff that I broke off the walls of my lungs. Then I attempt to lay down and get some sleep, which lately hasn’t been an easy task. It’s usually around 4:30am when I finally get in a good position that is comfortable and sitting up enough where I won’t cough to often.

 

 

So my life may not be a page turner, I am hoping to use this blog to turn things around and to become more adventurous! I don’t want to spend my time in the nothing zone i’m ready to jump off this train and into something better! Of course the hardest part of making a big jump is the courage to do it. I hope I can find that, I hope I can grow and continue to change into the person I want to be.

Today is an important day to me. Today is the two year anniversary of the passing of a good friend of mine. She also had Cystic Fibrosis and she was younger then I was. I was sitting in my dorm room when I got the text that she had gotten admitted for a routine tune up and her body just couldn’t handle anymore. It was 1 day, she was up laughing one day and gone the next. I just couldn’t understand how that could happen and part of me still doesn’t understand. I still have days where I think of her and want to send her a text and sometimes I still text her old number just to get that error message that comes out. I keep her memory close to me everyday. Any day could be that one day and I can’t stand the thought of her loss not weighing enough on me to make these basic changes to have a more fulfilling life.

That is my goal for 2014 to celebrate everyday!