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

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