I'm sorry to hear about this rough patch you're going through. Sometimes just two weeks of meds don't fix whatever is going on. I've had some treatments that have been two weeks and sometimes as long as four. I've also had my doctors change meds on me because the one's they started with weren't working. It all depends on the bug you have and your doctors are just finding the right combination to kick that bugs butt. Also don't get too upset about your chest pain. You have CF and you're sick...you're lungs are gonna hurt from time to time...lol. Just be aware of your breathing and your game plan of calling the doctors if it gets really bad, is a good one. Just try and not stress, I know it's easier said than done, but the more you stress the the more strain you put on your body. You'll be back on your feet in no time!
I'm not sure if you saw my most recent PM. Good news- There's another mom that would love for her daughter, who is 12, to connect with someone her age with CF.
Hopefully this will help you feel not so alone.
Hi my name is Katrina. I have had cf since I was born, I would love to chat without anyone who is looking for a penpal or just someone to talk to. I have a fb called Kat Jewell just message me on there or my email firstname.lastname@example.org
Hi, so my name is Anna and I’m recently 14. So... I don’t really get to talk about cf as much as I’d like to, my family doesn’t like taking about it. They aren’t in denial or anything - It’s just that they don’t like taking about the negative sides of it. I have literally never spoken to another person (online or in person) who has cf. I’m hoping to rectify that today.
So. I was diagnosed when I was born, and I’ve basically been at peace with it ever since. I actually kind of enjoy it when people ask why I’m shoving twelve pills into y mouth before every meal - it’s a good conversation starter. But, I’m curios... Has anyone here gotten bullied because of it? I have a bit of a belly due to it, but I’ve never been made fun of. Has anyone on here been teased because of Cystic Fibrosis?
When I was in 2nd grade, one of my friends laughed at me and told me I looked pregnant because of my CF belly. It did bother me, and I still remember it all these years later. I know she wasn't trying to bully me or be mean, she was just a little kid with no filter. But since then, I actually started to really work on my core. I started doing a lot of abs and swam and ran and by the time I was in 7th grade, I had a 6 pack of abs. Then everyone was jealous. Of course they still stuck out because I will always have a CF belly, but with working out it really helped it go down and tighten it up. People who don't know I have CF thought I was anorexic because I was so skinny, until my friends started sticking up for me and telling them they need to see how much I eat and love to eat. Just remember, if anyone tries to make fun of you for your CF, they have their own issues that didn't start or come from you.
While I wasn't diagnosed until my 20's until recently I had always been underweight and was constantly teased and called anorexic, my good friends would stick up for me and talk about how much I ate at home, because lets face it even 15 years ago school lunches sucked. I can understand the frustration of having no one to talk to it was especially hard for me to adjust to my diagnosis. I was really grateful earlier this year when I attended my first Breathcon and actually got to connect with others that have CF, unfortunately I don't know of any that are centered around adolescents but maybe you or your family can get something out of one of these CFF virtual events
February 27 - CF MiniCon: Self Care and Relationships (for adults with CF and family members) June 3 – CF FamilyCon, (for adults with CF, family and community members) August 5 – CF MiniCon: Transplant (for adults with CF and family members)