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

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, :)

Sunday, May 23, 2010

CT Scan

Hey guys!
Sorry I didn't post to tell about the CT scan, but heres the update:
After the ct scan( which was simple, you really just lay there so thats no biggie) I then went to the CF clinic just down the hall to see my Dr. After he and 4 other people looked at the scan for over half an hour I started worrying. It turned out there was really no need for me to worry. The scan didn't show anything. No muscle tears, no rib fractures, no change in my lungs. Then the question was, well WHY on earth am I having all this pain ?! The other doctor who is a pediatric Dr. that specializes in pain in CF had a 'answer' . Basically earlier back I had a bad chest infection which caused my nerves to say ' oh no theres a problem here protect' and made every touch painful so that the infection could heal or what ever you wanna call it. After the infection went away, the nerves were still working to help my lungs be able to heal, which is why I am still in pain. To fix that they have put me on a med called pregavalin to calm my nerves so they can relax and the pain will stop. They said the pill should also help with anxiety and the irritability that comes along with the pain, so my boyfriend is one happy camper, :)
NOW.. on too todays excitement, :)
Today I was getting ready for the day and my boyfriend Dale called me and asked if I wanted to go down to the races, so me and Dale went down for the day. I may be a little burnt.. but it was SOO nice to get out for the day. I must say even better then watching the races and seeing people spin out, was the fat guy I saw. He was really big.. anyways he was trying to walk up the stands and step over each bench seat thing. Well his leg didn't go up high enough and he still went to walk.. can you say F.A.C.E.P.L.A.N.T ! I really had to hold back the laughs at that one.
I Hope you guys had an exciting and warm day in the sun!

cfprincess xxo

PS - The picture added , Is one I took of driver Terry Roma !

Friday, May 21, 2010

You Know You Have CF When ...

Today I thought, hell, why not a post to brightens someones day! So here it goes..


1) You do a happy dance when you hack up a huge wad of mucus, show your dad and he gives you a congratulatory high five!

2) You know more medical terms by the age of ten than most people know their whole lives.

3) You have multiple scars from PICC lines, IV's, Ports, and other 'experimentations' as the doctors like to call them.

4) You are so used to getting blood drawn that you are the proverbial 'test dummy' for all the new nurse fresh out of college—"you don't mind do ya?!"

5) You can smell smoke hundreds of feet away and go searching for the source so you can thump them upside their retarded heads!

6) You quite adamantly think that smokers are THE dumbest people you know—Isn’t it great when they walk up a flight of stairs huffing and then say they NEED a cigarette?!

7) You laugh at those who whine & complain from a common cold or worse yet stay home because of it!

8) Some of the most memorable times with your friends/family is hanging out and wasting time at the hospital.

9) You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF.

10) You make people wince because of the sound of your cough.

11) You can sleep through anything—you perfected the skill by having to be up at 5:30 am for years listening to noisy compressors when trying to sleep.

12) While doing you're nebulizers you MUST do your make-up, straighten your hair and have a conversation with your mother about your most current ache in your chest all at once or it would never get done.

13) Many adults have commented to you that you are very wise for your age—yippee!

14) You really did have a midlife crisis at the age of 18 — what the heck do I do now? I wasn't suppose to live this long!

15) You laugh at your friends and their newest drama—hah! Don't we all wish it was THAT easy!

16) You get truly pissed at people who don't put yes as organ donors on their driver's license—what the hell are you going to do with them when you're dead,?!

17) You are constantly on the go, realizing that time stands still for no one.

18) You grew up thinking that everyone in your class does machines, nebulizers, inhalers, sprays and pills for an hour or two each morning before they came to school and an hour or two after.

19) You are more scared of losing your loved ones, family and friends then you are of dying yourself.

20) You realize at an extremely young age that you can buy everything but time and as a CFer that is the one thing you would love to have!

21) Your doctors ask you which antibiotics you would like this time.

22) You become less and less sympathetic towards people with colds; in fact you do everything in your power to avoid them.

23) People ask you how you are; your automatic response is "fine" even if you feel awful.

24) All of your friends have tried your TOBRA arousal and gagged at the taste.

25) All laughing attacks lead to coughing fits.

26) You know your drugs would sell for a fortune on the streets.

27) Your wrists are the same size the whole way up and down.

28) People can identify you just by your cough before you walk into the room.

29) You can down 10 tablets in one sip of water.

30) You are the only one carrying 3 different bags full of stuff to a sleepover — one for clothes, one for medicines, and another for your mask machine.

There are the quick top 30 ways you realize; my god I'm a CFer! If you have anything else to add comment :)I'll post again later after I come home with the results of my CT scan.. wish me luck!

cfprincess xxo

Thursday, May 20, 2010

One of Those Days.

RAWR! You know those days where you just don't want to get up, and you're in this slump? But then you get up anyways. Sometimes it might feel like you are going to regret getting up.. but other times it's like thank god I dragged my lazy butt out of bed! Well lately those are the days I have been having. I'm stuck home sick, and I don't have anything to really do. I sometimes wish there was a magic wand or something, and I could flick it, and no one would have CF anymore. Or any other disease really. No one really deserves a disease it just happens to you. I think the only people that should be allowed diseases are those who do things they know they should. Like smoking, and alcoholisim, or people who abuse other people. They are the ones who I would rather see sick. But onto the point of this post! I have been pretty sick and in alot of pain lately, and none of the doctors my CF doctor has brought in can explain it. At first they said maybe a muscle tear, but after they gave me treatment for that, it was shown that it wasnt a muscle tear. So then they said maybe it is a rib fracture, theres nothing we can do for it besdies give you pain medicine and make you rest. So I did. I've been resting for weeks, and the pain has only gotten worse. Once I went back to my doctor, he said he wants to take a closer look inside my chest, so he has put in a rec. for a CT scan. Now I am left to patiently wait, for this scan to find out the next step. Has anyone else has this problem before ?

cfprincess xxo