The journey of a young woman with a chronic disease, Cystic Fibrosis

Saturday, July 10, 2010

ridin' solo

everything you had in your world and it is all taken away from you. that hurts.
everything you ever cared for, and it dissapears, it hurts.

but the thing you had plans with and great memories with, and shared so many experieces with, when the person decides hey don't know if they want those plans anymore, and they don't even walk out, they stay around.. soo close to you that you see them make plans wit someone else. well thats devestating.....

Wednesday, July 7, 2010

Today ...

It's hot and muggy.
Sticky, and slow moving.
It's not making for much of a good day as far as the CF pain crap goes.
I need the wind, I think today is a good beach day.

Theres a bit of stuff to update you on, but I'm to warm to write anymore.

cfprincess xxo

Sunday, June 27, 2010

Everything is just.. difficult.

I had SOOO much fun at prom with Dale. It was a day where we both got to be happy and get our pictures taken with a couple friends and dance together and just have a good time. After prom we went out for supper at jackastors with the same friends and just all around, it was SUCH a good time.

So of course it had to end.

Once I got home and was settled down I realized that my throat was really sore, but I just shrugged it off thinking it was from being at the dance and talking loud, laughing and all that. When I woke up the next morning my throat was more sore and I had a bit of a stuffed up nose and a cough. By the end of the day on Thursday I started having increased pain in my chest. Friday was the same deal, except the pain was a tad worse. Then yesterday June 26th, my 15th birthday, I went to upper clements.

I had another awesome day (I went to the park with Dale) and seemed to actually get along fine with the help of some advil and tylenol. Well, I got along fine until The 3 hour bus ride home.

As soon as we were in the bus pretty much, the pain hit me wickedly. I was leaned over and just couldnt get comfortable, yet didn't want to move because it hurt so bad. I ended up leaning over just holding my sides just trying SO hard not to cry at every movement, and to also not freak out at everything. I don't know if everyone can quiet get where I am coming from, but it is so hard to stay calm or act like you give a crap about anything when you are in pain. Although I didn't mean to I ended up throwing an ipod and headphones at dale for not getting it, which is no fault of his own. It seemed like so much longer then it was on the drive home, and I just wanted to lay down. Once off the bus mom didn't know weather to take me back home to rest or to emergency, but we decided on going home, which was a good thing.

Earlier this morning pretty much right after I woke up my mother called the Dr on call because I was still having really bad chest pain. To sum up their conversation, he said that there are NO beds available, and that we will have to have an appointment tomorrow even though he is flooded with patients...can't say that makes me feel to confident about anything. I'm not sure where I stand lately, one day i'm okay the next im not, even minute to minute it changes depending on how I am sitting and who I have with me.

I just really wish I would get admitted and they would keep me in until they knew what in the hell was wrong with me. This time I would like to see them actually put me on IV antibiotics, kill the pain with pills so that I can do some productive airway clearance, get PFT's done, and know what kind of bugs I am growing. This time I need to demand better for myself. I wish they knew better then I do instead of feeling like I know what I need better then the doctors do.

But my pain is getting to be extremly unbearable, so I am out for the night!

cfprincess xxo

Tuesday, June 22, 2010

Prom Planning !

Prom Prom Prom, everything is all about prom for the last week, and finally it's here in one more night!
I can't wait. Even though I still feel like crap, it's one night that will make me forget about being sick. Well until I have to take pills or insulin. lol.
Today at school is all of prom committee setting up and decorating, so thats where i'm headed!
I'll be sure to write all about it <3

cfprincess xxo

Friday, June 11, 2010

Another week down, Another one on it's way

So CF clinic sucked.
Then Wednesday sucked.
Now todays just...another day.

At clinic on Tuesday I had PFT's which showed that my lung functions dropped about 21%FEV1 ... which bites. So becasue of the fact that my lung functions dropped, I'm brining up stuff when I cough, and that I have increased pain, they made a new plan. I am now on 2 antibiotics. Inhaled Tobra, and oral Keflex. They also decreased my morphine because it suppresses my cough and I need to cough stuff up to get rid of the new chest infection. Because they dropped my morphine dose, they upped my Lyrica to 3 75mg pills instead of 2 75 mg pills twice a day -which brings me to why Wednesday sucked.

When I first got on Lyrics I was really dizzy when the medicine first got into my body. That whole first day I was crazy dizzy, I couldn't even walk without my mother holding me as I was walking. After I got use to that dose we moved it to 2 75mg pills, and my body just accepted it right away, no dizziness. I was on that dose for 3 weeks, then thats when they moved me to 3 pills. I guess because it was such a sudden change in dose, my body got the same dizziness, but it didn't kick in until I was at school. I was trying to write something for English because my teacher needed more marks for the class when the dizzy spell hit and I just sat there unable to focus on my sheet. Once I came home it was all I could do to sleep and lay around- so thats what I did.

That's all the last week has been... just a lot of sleep and catching up on lost sleeping time. Rest has been much needed, but I still feel completely drained, so it's time for more sleep.

cfprincess xxo

Tuesday, June 8, 2010

Good Time - Killed By Old 'Friends'

Hey sorry for the lack of posts.. life has been soo busy !
I only have time for a little update.. I'll leave more later.

About 2 weeks ago my pain doctor took me off of morphine and onto lyrica which was working awesome. Then 2 or 3 days off of morphine I started coughing non stop all night. The morphine basically also suppresses your cough .. so they put me back on a night dose to get rid of the cough. It worked and has continued working. But now somethings different..

Last Friday night I went to the Races with Dale. This time it was so much funner, It was dark out.. the cars were spinning around, cars were sparking... I kinda loved it :) But after the races we went down to his campground for the rest of the weekend.. It rained like the WHOLE time but it was still awesome, Especially when we were playing football. I'm not sure anyone else thought that it was as awesome as I did but when after running around I brought up gobs of 'green stuff' from my lungs I was kinda pumped! Only problem with that is that it left me sore. Again.

Now today I am going to CF clinic so I will be able to talk to everyone about whats been going on, then see what else they can pull out of their sleeve.

Right now I'll basically take any answer or fix that they can give me... I'm tired of all this stuff.. it's been months and I just want a fix.. even if it only lasts a bit and then I need a new fix, I could live with that, It's better then this isn't it?

On the plus side.. at least it's sunny today!

Now I'm off to Clinic.. wish me luck :) But just as one last thing... I wanna know what you would do if you were in my shoes.. maybe you can give me different insight.

cfprincess xxo

Tuesday, May 25, 2010

My “alright that’s enough!” moment.

I wrote this awhile back before I ever had a blog and though I would post it for you guys to see what you thought.. tell me what you think!

There is a time in everyone’s life that they want to give up depending on what’s happening to them. We all have those days where we just think we can’t pull through; but we do. Sometimes these days have a way of repeating themselves. For those who have this problem, at some point they reach their “alright that’s enough!” moment and realize what they have to do to stop these times. I have recently had my “alright that’s enough!” moment.
My way of coming about it is a bit strange; I just told myself
‘alright Megan enough is enough why are you suffocating
yourself in the bad, when you have the good reaching out to
help you’. I was finally fed up with my pessimist self, thank
The reason why I finally started seeing it this way is largely
due to having my two best friends Kayla and Dale (now my boyfriend) beside me to support and
encourage me to have the strength to deal with everything that comes my way. Kayla is like
my twin, and Dale my polar opposite, with this combination of differences and similarities it
gave me the view of someone who has the exact same view as me, and one who has the opposite,
I get to see both and it changes how I think of things.
You see, I was diagnosed with Cystic Fibrosis at three months months old. When diagnosed
this young you don’t know much else, you learn to think your life is almost normal. I didn’t have
any big complications as I was growing after I was diagnosed until that first year of school when I
was 5 years old. Within a matter of weeks of being exposed to 20 other kids’ germs I landed with
an infection putting me into the hospital. My first hospital stay since I was diagnosed. After a 17
day period I was out and stayed out with minor complications until I reached fourth grade. Then
again, I was kept in for 17 days with IV antibiotics, then sent home with increased lung functions in the mid 90’s. After which I again was doing fairly well until seventh grade, the beginning of a new school. The problem was the same; decreased lung function. Sure enough with a 14 day stay my lung functions came right back up and I was back into the swing of things.
In Spring of 2009 with me now a grade eight student at the same school, I came across a whole new set of problems. With traveling to different classrooms every hour for a new class, problems became obvious; I was having SUCH a hard time walking the three flights of stairs. I then started taking some form of an oral antibiotic for three weeks which failed to work. Into the hospital I go. You see, my doctor believes that after 14 – 17 days in the hospital, there isn’t much more of any improvement, so I did my stay with the IV antibiotics, arousals and physiotherapy three times a day along with some oral antibiotics, but had no budge in my lung functions. At the end of this 17 day stay, my lung functions go up by about 10%, I was then sitting at roughly 75% FEV1. Frustrated mom and I then packed my things back up to head home. For the next three months I continued going into clinic every 2-3 weeks to get a lung function test to see if I had improvements by just oral antibiotics at home.
In July of 2009, my symptoms increased causing a ‘tight’ feeling in my chest. I was given Prednisone by my family doctor; my respiratory doctor was away. I had absolutely hated the prednisone, I wasn’t myself on it, I was extremely anxious and I wasn't getting noticeable relief. I was taken back into the hospital. After an x-ray was taken they found that I had a little bit of fluid in my lungs and that the lower left lung and middle right lung were my ‘problem’ areas. This time we would try something different. Instead of my normal IV antibiotic I was put on two different ones, an oral antibiotic, a new type of Physio, a Tobra nebulizer, and was to use a new machine the hospital had to create a speaker like wave to ‘rattle and move’ the secretions in my chest. I was in the hospital for 21 days exactly; my longest stay yet, and it was summer.
There was a lot going on in my life at this point and I started seeing who my real friends were for sure. There were a lot of people that were in my life that I rarely saw that summer, they just weren’t there for the support that I needed. Looking back I regret taking things the way I did. I ended up getting depression. It only got worse when I still was not feeling any better. My social worker at clinic was always someone who I could trust and talk to, and she thought it was best to send me to see a therapist. I only went to his session once, but it was what I really needed for someone to just listen and not judge me. All in all, he kept me pointed towards those two friends.
Kayla and Dale are two of the most supportive and understanding people you could ever meet, and they are exactly who you want on your side. They have stuck with me through everything, from when I am in a crazy mood from prednisone to me just feeling so blah and not knowing where to turn. I couldn’t ask for two better friends. Kayla and Dale are my support and courage to go through everything with stride and a smile on my face; I owe all my happiness and fun times and the smile on my face to having them. Now in early 2010 I can’t say I’ve had a great start to my year. I have been in the hospital for 2 weeks, and completely missed 2 whole months of school in my grade 9 year, but I am pushing through.
If I didn’t meet Kayla through an old friend 3 years ago, or Dale through an Ex a year ago, I don’t know where I would be standing in my life at this moment. The biggest change thing I see now because of them is that with the time, effort, and patience they have put into me, they deserve for me to put the same energy back into my life. Help someone else like they helped me; help to see the light, because there is always someone else having a harder time and worse off than I am.

If you guys wanna know where I am at now, be sure to comment and I will write another blog like this :)

cfprincess xxo

PS - I decided since it is Cystic Fibrosis Awareness Month, I will write in either blue or purple all month :) Also in the picture is Dale and Kayla, :)