My Grown-Up CF Christmas List
I know you are very busy this time of year granting the gifting wishes of many—both children and adults; but, if you could, would you mind granting a few very specific wishes of my own? I’m not asking for much, just a few things here and there that would make my days with cystic fibrosis a little less daunting and a whole lot more jolly. You could consider this my grown-up CF Christmas List.
1. No insurance drama
I wish this year for all my insurance claims to be processed correctly the first time without a need for me to call and “straighten things out." No one seems to listen to my initial request and they keep transferring to another representative that is just as clueless.
Please Santa, it is so frustrating and I’m losing my patience! If you grant me this simple wish, I could use that time to call the people I love and actually want to speak with over the phone. At the very least, would you be able to add Christmas songs to the on hold music playlist next year?
2. Hassle-free prescription filling
I wish that all my prescription medications would be covered by my medical insurance and delivered on time to my home with as little effort as possible. When you take 20 plus medications, it takes far too much time and mental space ordering and tracking those very important packages.
I wish my prescriptions would show up at my doorstep with ease as the nicely wrapped presents show up under the tree on Christmas morning. Santa, how do you do that? Can we think of a better system? The pharmaceutical industry could learn a thing or two from you.
3. Personal assistant
4. Comfort items
If you have time, I wish for some small comfort items for when my body feels wildly out of my control. Heated blankets, comfy PJs, slippers, and lunch made by a friend would be perfect cystic fibrosis gifts for the days I struggle to do anything else but rest.
The tough days equate to how you feel on December 26th—fatigued, achy, and in need of a nap. I know you understand because you’re just as busy as me.
5. Treatment for the ones still waiting
Two-thousand and nineteen has been a great year for a lot of people living with CF. The holidays will be special for many of us with the approval of Trikafta. Personally, I will be celebrating the holiday season with a little more breath beneath my ugly Christmas sweater.
However, I wish for the ones still waiting continued hope and patience, and ultimately, life-changing treatment for all. They have waited so long for their own Christmas miracle and it’s time they got one.
But most of all, Santa, I wish for the simple relief of stability and improvement for everyone with CF and myself. Often, we try so hard to take care of ourselves, but sometimes it's not enough. We simply wish the results matched our efforts— no more defeating frustration or puzzling decline. The majority of us would just like the simple ability to “plan." Please, grant us high holiday pulmonary function tests, bellies like bowls full of jelly, protection from the germiest of germs, and the mental stamina to tackle it all, day after day.
P.S. Instead of vacations to the hospital for tune-ups, I know many people with CF would enjoy actual vacations to any sunny destination of your choice. I’m included in that “many”. Happy holidays!
Jingle all the way,
Janeil, 29 years old
What cystic fibrosis gift would you like most?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?