Dear fellow person with cystic fibrosis:
I want you to know I see all you do, and I am proud of you.
Our families saw our daily treatment routines when we were kids and then watched us leave their homes -- taking our routines with us. Our friends hear our stories about being sick or visit us in the hospital, but don't see or feel all we go through. Our co-workers think we are the guy or girl who coughs a lot, misses work for doctor appointments and routinely takes sick days.
If you have a significant other, they see your daily routine and hopefully pitch in where they can, but it's ultimately up to you to carry the burden.
But, I want you to know I know what it feels like to:
- Get up at 5:15 a.m. and do treatments before work
- Take your intravenous antibiotics to work and run them on your lunch break
- Finally access your own port, after many failed attempts
- Boil nebulizer cups and cook dinner at the same time
- Be on the phone with the pharmacy at work while sending a firestorm of emails at the same time
- Go to the gym every day to keep your lungs strong
- Pay your hospital bills and co-pays
- Stock your own in-house pharmacy drawer in your kitchen
- Have to come home and do treatments late at night after dinner out with friends
- Cough up enough blood to scare you to into going to the ER
- Wear an insulin pump
- Go to bed at 8:30 p.m. during the week
- Be in the hospital on holidays
- Pack for vacation and drag your vest through airport terminals
- Feel like crap on the inside of your body and look normal on the outside
Through a mutual friend, I had the chance to speak to another person with CF on the phone a few weeks ago. It was a great feeling to have someone who could relate to what I go through each day on so many levels. It was an ear to bend and a welcomed confidant. I am going to keep in touch with this person. I recently sent her a text when I finished my IVs over Thanksgiving. We both agreed that "freeing" is the best word to use when you complete your course of IV antibiotics.
I hope this helps you realize that you are not alone. You may feel like you are some days, but you're not -- I promise.