What does your CF look like to you?

[LisaV]

To me, as a spouse, it looked like a succubus.

 

[wallflower]

I don't think about it much, but when someone looks at me when I cough (people I don't know, or when I'm out in public), I feel like a giant germ - all gross and disgusting.

With people who I only know a little (like co-workers, or others in the same organizations as me), when they find out I have cf I feel like I become a small weak little girl that they expect to call in sick every day.

And sometimes a combination of the two.

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>

I have always pictured CF as a lie in my life. Ha I know that sounds dumb, but since I was dx, I keep waiting for them to say.. OOPS just kidding... I don't know why it is so hard for me to accept. I am better about it but still don't totally accept it. I guess I think that if I accept "it" "It will get the best of me. ...</end quote></div>

Guess that's how I am. Still find it hard to believe that DS has CF. He passed his sweat test with flying colors. We were told several times they didn't get enough of a sample for the genetic blood tests -- although later they came back as homozygous delta f508. But part of me thinks -- maybe they just THINK that's what it is because that is the most common mutation.

Reality is when DS cultured pseudo. When he didn't get enough enzymes and the first time he pooped a little oil. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[LouLou]

I try not to picture anything too ugly. I'm a big believer in positive mental imagery. If I picture my lungs I picture healthy pink tissue with lots of open airways. If I have a lot of congestion I picture a small amount of pglyem moving upwards on the exhale. I'm getting into yoga breathing. Risa, have you done yoga before?

 

[EnergyGal]

I have had that visualization as well pink lungs Lou Lou. When I had my transplant before the operation I imagined my lungs flying out of my chest (told the surgeon and he laughed) so I have lots of positive visualizations as well.

I do yoga stretches three times a day now. I am seeking out a class in my area. I find that yoga does so much for the mind and body(spine) and especially the lungs.

 

[Lilith]

I suppose I see mine as an adversary I face in battle, and when I
daydream, I mostly see a deceptive image of a black-winged,
beautiful angel with beastly eyes.  Because CF in itself
is quite deceptive, I think.  It can appear to be nothing at
first, but then it slowly decays us until its just a raging
monster...<br>
<br>
Sorry for the "out there" description, but I try to
picture everything physically and dramatically.  I'm an
artist.  That's what I do. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[mneville]

I try to think positive when it comes to my son's CF. Diagnosed at
8 days old, he is doing wonderful at age 2 besides some sinus
surgeries. I am going to try and stay positive for him so he does
not view it as a horrible enemy. I think CF is making him the
amazing little boy that he is now. It is almost as if he knows he
has to fight a little harder than the average 2 year old so he does
and he makes the most out of every day! He has taught me so many
things already about courage and strength and loving life.<br>
<br>
I also hang on to Warwick's words: CF is not in itself a disease.
It is a condition of inherited gene mutations that leads to a
higher risk for many diseases. But with good, preventative
treatment those risks can be minimized to that of the general
population without CF.  That is the way I choose to look at
it. I realize that I have that luxury because Aidan was diagnosed
so young and at a time when treatments are the best.  Aidan
does not have lung disease, he is at higher risk for lung disease.
Aidan does not have diabetes, he is at higher risk for diabetes and
so on....<br>
<br>
Megan

 

[EnergyGal]

Hi Megan

That sounds very encouraging. I had a doctor many years ago (who passed away) he was like the popular Dr. Warwick and we would drive four hours to see him. His name was Dr. Harry Schwachman
It is so great to have a doctor who you admire and believe in. That can change your entire perspective on life.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Risa</b></i>

Hi Megan



That sounds very encouraging. I had a doctor many years ago (who passed away) he was like the popular Dr. Warwick and we would drive four hours to see him. His name was Dr. Harry Schwachman

It is so great to have a doctor who you admire and believe in. That can change your entire perspective on life.</end quote></div>


OMG Dr. S dx me at Bostons Children hospital. He was the one that put me on the lovely Viokase! Small CF world!

 

[EnergyGal]

Me too I took viokase. Yuck that stunk. I also took cotazyme. Now I have my own wonderful enzymes.

 

[Brad]

mcbrash

Sandy,

My Brother Franky Passed at 27 with Cf as well.

He was also an Artist , he worked in oil, charcole,
and he also carved....

He sometimes would draw in great detail some really
crazy looking objects, I am not sure if we still have them
because he would get mad and tear them up, I didn't know
it then , but I think that was his way of fighting back, This was
way back in 72 when he passed,so the meds were few for Cf ....

Franky called these drawings Snot Monsters ,