Cystic Fibrosis: A gift or a burden?

CYSTIC FIBROSIS:

is a deadly genetic disease affecting 1 in 3000 people in the US. It is considered rare. It affects the lungs, the pancreas, and depending on your genetic mutation, it affects pretty much every organ you have. The body creates mucus that is too thick, thus allowing the germs to buildup and lead to an infection.

_____________________________________________________________________
And now I understand the risk that comes from being in close proximity with a person who also has cystic fibrosis. As we stare in awe at each other, I can feel the curiosity as to whether or not the other person has CF or if they are here for a different clinic visit. The tension is only there because; not knowing whether or not the other person has the same disease or has b cepacia is an even bigger risk than just communication with one another. It is scary, but at the same time knowing that they know what I am going through at this point in my life, knowing that we are on the same meds, wake up early to do the same treatment, it’s comforting; A sense of comfort that cannot come from a hug. The hacking cough, we share, we don’t scoot away from their seat because we think they have a cold, we scoot away because we don’t know if they have MRSA. The knowledge of one another’s disease is soothing and at the same time, stressful. Only we know what we go through.
People with CF cannot live normal lives. It is utterly impossible. No matter how old you are, how severe your case is or whether or not you follow the medicine regimen. In order to have a good start to my day, I must wake up at six thirty ( I know its not that early!) I start EVERY day by taking four nebulizer treatments, vest therapy for thirty minutes (at least), I "pop" at least 30 pills a day. The treatments total to about two hours in the morning, one in the evening and two hours at night. Every CF'er who does their job right goes through this. We can't come in contact with each other; its a danger to our lives. meaning, if i had a sibling who had CF as well, we couldn't even hug. sucks huh? well I'm sure there are worse things out there.
Having CF has allowed me to realize the true beauty of life; not knowing when my time is going to come, but knowing that I have less time here on earth than others has given me the opportunity to see all the greatness in life, it helps me live my life to the fullest. But on the down side, being constantly sick is a pain in my life all around. The medicines are so time consuming, so is CF a gift or a burden? For me, its a bit of both.

Bookmark/Search this post with:

 •    •    •    •    •