I want to make friends with people who understand me.

[IsabelSlays]

Hi there I'm Isabel and I'm 16 going on 17 in 2 months. I was just diagnosed with CF last year about 7 months after I began becoming sick. It's been a crazy year since it all started and I never new my life would change so much. I can't play my favorite sport anymore, my life plan has become difficult because of school, and even though I was just diagnosed I am in a severe state. Last year my lung function Dropped to 20% and 5 months later went back to 100. Now which is 8 months later I am at 50%. I stopped doing my treatments and taking my medication, I don't know I just don't want to do them anymore, I gave up on them. I feel like they don't even help me. I don't even sleep with my Bipap machine either. Or take my vitamins or anything. Idk I need help. I feel like the reason I stopped is because of my mentality, I've become very depressed and anxious all the time. My anger problems have increased so much and it's getting really bad. I don't have any ways to cope with what's going on and I have no one to talk to because my parents do like talking about it and I don't really have friends.

 

[2roses]

Isabel, I'm so sorry that you have CF. You are dealing with a LOT with the disease and getting a late diagnosis on top of everything else a 17-yr old has on her plate. I'm a mom of two girls with CF, one being your age, and my heart goes out to you.

Your depression and anger are completely understandable. It might help you to go on antidepressants for a little while. Can you talk with someone? Maybe with your social worker at clinic to start with? Your CF doctor may be good to talk too as well, and maybe can adjust your treatment plan too to take some pressure off. It's important to be completely honest with your team. Being a mom, I hope you're able to talk with your parents, but I imagine this is difficult for them, in a different but real way, and they are adjusting to this as well. But you are their daughter, you have CF, and you need their support!

CF has its ups and downs even when you do everything you're supposed to. It's hard to keep up with all of the treatments when you don't see an immediate result. It's so important though for your long term health. With the new Vertex medications out and coming out, you may benefit from them. This is life altering, but you can still have a great life!!!

I read about CFers running marathons and doing amazing athletic feats. Maybe you can get stable and back to the sport you love.

You'll be in my prayers that you get the support you need and your health, both physical and emotional, improves.

((Hugs))

 

[ethan508]

You sound a little depressed, which is a very normal and very common thing in the face of such a stressful life change and facing such a tough disease. Please get to a therapist to get professional treatment for your depression.

Go find a support system that can help you talk out your problems. Find something that brings you joy (service to others, exercise, learning/exploring) and make sure you do it frequently (joining a club, or a church youth group, or a recreational team of some sort). Hang out with people that are loving and accepting. Find your reason for living, then use that reason to motivate yourself to be compliant with your treatments.

Ask any questions you have and share your story here. There are a ton of great people on this forum that have been in similar situations (later diagnosis, problems with treatment compliance, anxiety and depression) that should be able to help you.

 

[IsabelSlays]

thank you so much

 

[IsabelSlays]

thank you

 

[beautifulsoul]

I agree with everything Ethan has mentioned. Depression is common with CF. Ask you CF team or social worker if they recommend someone to talk with. I personally find it helpful to write my frustrations and anger in a daily journal. I have found actives to do that don't involve a lot of physical movement so I can breathe easier. Things that involve sitting like art's and crafts, writing, reading. I can't imagine how hard the diagnoses has been for you especially at the teenage stage of life. Feel free to Private Message me if you are interested in talking further. Hugs to you,

 

[MikeInMT]

I am sorry that you were diagnosed in your teen years. I know CF can be very difficult at any age in life. And I am probably not the first to tell you, it is perfectly normal for us cfers to go through stages of not taking meds. Depression is also pretty much hand in hand with CF. I am 32 years old, and 2 years out from double lung transplant. I am still on anti depressants as they help me get through the rough times.
I would like to ask you a question. Did anyone tell you that you can not play your favorite sport? If they did then they do not know what they are talking about. I played tennis from 7th grade until 10th grade, the last two years I played was a little rough, but I feel it helped keep my lungs doing good. It seemed to me about the time I became less active was the start of the slow down hill spiral of my lung function. I would encourage you to discuss with your provider getting on an anti depressant. There is no shame in it, We have more on our plate then most people. I would also encourage you to keep being active in sports. Don't push your self so hard you are getting sick all the time though.
I hope the best for you, and if you need some one to talk to you can pm me, or any other of the wonderful people on this board.
In good health,
-M

 

[Kat Jewel Hoffmann]

Looking for someone to talk to that has cf. Seems like people that dont have cf dont understand me. If you wanna chat I have a facebook called kat jewel. I am 21 almost 22 years old. I live in lafayette la. If anyone would like to chat with me message me on here and or facebook if you have one.