everyone has a story, here is mine:

I have Cystic Fibrosis, diagnosed at birth by Meconium Ileus (an intestinal blockage requiring surgery). Although considered healthy most of my life (with no lung involvement), I've always dealt with fatigue, digestion complications and sinus issues.

As a child it was thought I was miraculously spared the devasting effects of CF - it was believed I had a mild case of CF, and wouldn't develop the typical complications of a person with Cystic Fibrosis. Respectively, my health was taken for granted, and I wasn't taught the importance of lung maintenance.

So, when I woke up sick one January morning in 2002,
I simply thought I had the flu, and didn't feel the necessity to go the doctor. Two weeks later after no improvement, I found myself in the hospital, on I.V. antibiotics and oxygen for no less than 14 days.

Not until just recently have I come to understand that what I experienced was my first CF exacerbation, which, sadly, caused irreversible lung damage by waiting for treatment.
So much for being "healthy".

Although I tried to return to work, it proved to be too stressful, too demanding, and too exhausting.
So, that October I retired and started my "life with CF".
And here we are today....

Thursday, February 7, 2008

Don't Assume (a poem my an unknown CF author)

Don't assume that because I look well, that I feel well. Looks can be very deceiving.
Many days I look great but feel terrible.

Don't say, "I know how you feel." No one knows how anyone else feels.
We all have varying thresholds of pain, and pain cannot be measured.

Don't tell me about your Aunt with so and so disease or ailment and how she managed in spite of it.
I am doing the best I can.

Don't tell me, "It could be worse."
I don't need to be reminded.

Don't decide what I am capable of doing.
Allow me to make those decisions.
There may be times I'm wrong, but I'll know soon enough.

Don't be upset that you cannot ease my problems.
It won't do any good for both of us to be miserable.

Don't ask me how I feel unless you really want to know.
You may hear a lot more than you are prepared to listen to.

Don't assume because I did a certain activity yesterday that I can do it today.

Don't tell me about the latest fad cure.
If there is a legitimate treatment, my doctor will let me know.

Do realize that I am angry and frustrated with the disease, not with you.
Do let me know that you are available to help me when I ask.
Do offer me lots of encouragement.
Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel.
Do continue to invite me to activities.
Just because I am not able to bike along with the gang
does not mean that I can't meet you for the picnic at the end of the trail.

Please let me decide.
Thank you.

~Author Unknown

Posted by Sally at 1:49 PM

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