Me too. 40 and still going. We CFers are a strong bunch.

Stay strong all of you!!

Leroy Garcia stay strong 💜💜💜 and good job!

i have cf in only young

Do you get the hiccups with cystic fibrosis

I totally agree

***** take care my freind..

Yes thank you

Yes she is

I wouldnt like to speak for her but I would imagine she is probably athiest as majority of people in the UK are! Otherwise she would most likely be a member of the church of england

thanks for the response. usually people don't respond in a such a kind manner, so thank u so much. please visit my channel and maybe leave a comment. sherrie lm

um, ok. im a Christian and love my Jesus but I don't care for those Christians that beat people over the head w/ the Bible. in the US we call them "bible beaters" but God loves them too. I like to share The Lords love for all and leave it to Him to do the judging or whatever else He see's fit. there is so much hate in this world and so many people choosing to threaten w/ fire and brimstone and then talk about His love afterwards. to each their own, Im a Christian and im not perfect but I am forgiven and am loved by the Highest. thanks for the history lesson too

sherrie LM Being an intelligent and highly rational individual, she's probably an atheist

Hi Holly. You haven't posted in a while. I hope things continue to be OK after your lung transplant. Best.

Tips: 1. Insert the thing yourself. Then you have direct control over insertion, AND you can feel the feedback from what you're doing. 2. Get the narrowest size you can use without it clogging and with it still being long enough. 3. Take the guide wire out and don't use it - nasty thing designed to help nurses force their way through sensitive tissue. 4. Pull your upper lip down. This pulls the tube away from the sensitive bits as it goes down. 5. Go slowly! 6. Do NOT just force through any resistance - this is what causes pain, and understandably so. Instead stop, back up a bit, and try again until you find the way through. Tilting your head back can help open up the passage. 7. Once you feel it just above your gag reflex, swallow several times without advancing the tube. Eventually the swallow will pull it past the gag reflex on its own, and also past the danger point where it could go down the wrong way into the lungs, and then it's plain sailing from there. 8. After that, keep swallowing and threading slowly and steadily until you've inserted it to your pre-measured distance. Take little breaks along the way as necessary. Basically, be kind to yourself and remember there's no rush. Done this way you get NO pain, and any gag or swallow reflexes get a lot less very quickly with practice - kind of like getting used to contact lenses.

@@catherinespark thank you for the detailed reply!!! That's impressive! I had the tube for anorexia, so it's unlikely I'll need it again! I'm also a nurse now, I insert them into little premature babies all the time - poor little guys. Take care and hope you are ok xx

Narisa Amel same 🥺 and hey army! haha

I also have ehler danlos! It's always interesting to see how differently people are affected. My major problems don't really cause me to take any drugs, they just cause some pain I have scoliosis and had two surgeries for it. I have acid reflux, but rarely need to go on a course of medication for it. I have severe joint pain, but that can't be helped really. Our genetic condition seems to have so many different down sides and different levels of coping required. Either way it's always weird for me to meet people with the same condition as me lol.

oh wow that's very fascinating! it's crossed my mind before, that the EDS could coincide with CF in some way, at times. Also other genetic things, my hubby seems to have "half CF" but they don't take him seriously yet. He has the symptoms of chronic congenital pancreatitis, stunned puberty, very underweight etc.. i get really concerned about the weight especially. he seems to not aboard fats well, has all kinds of symptoms indicating it. it's either that or some metabolic condition. his grandfather had some mysteriously similar health issues. we have two little ones with similar issues, one EDS, one classic autism.so i push myself a lot, and end up sometimes feeling like i have to rest or i'll pass out. i've been starting to rest more to prevent getting to that point, because it's been happening more. it's been a struggle to have these things identified and understood formally. i speak out and blog, but that's a double edged sword best not elaborated, hehe. these things all probably have similar base. my hubby has aspergers, i also have aspergers, which is highly genetic too, and people with ASCs (autism spectrum conditions) are more likely to have the EDS and other genetic anomalies (i hate the word mutation lol) etc.. I am not sure about with CF, but i think the most presenting condition can upstage others many a time. I believe both treatment and research would be better and more fruitful if everybody's individual "constellation" was mapped out, examined, and explored as to how they all interrelate and why. I think more solutions would be seen "thinking outside the box" rather than in. time if money, but i still think there could be positive compromises. people would shift from hopeless to hopeful, when they look past their fingers and see that there could very well be answers to these things, and prevention measures, in places they didn't think to look before; "outside the box."Hence my name :P i wrote a blog on how gov'ts need to pay more attention and care to genetic illnesses and support them. most of the research that helped to improve CF treatment was via donation from the people who loved and cared for those with CF, not gov't or institution. Boooo!.... yeah, the pain cannot be helped, we have to get our minds around it or be miserable which only sells us short of the moment. Good for you for not taking any drugs for it, really it only worsens the systemic condition. i've gone that route and felt like i was going downhill. but there are some meds we do need obviously, i need things for my gut. benefit outweighs risk. it's a question of discernment. You have inspired me because you so eloquently rise above it all, something i should do more of. I'm getting much better, for awhile i let the pain get to my head and interfere with my happiness. medicals weren't' even supportive of that and threw labels at me, which only made it worse, but in retrospect forced me to have to rise above them and their subjective attitudes also. I always knew there was something "fragile" about my body hence why i was extremely averted to sports that were heavy on stamina and contact. I was always extra cautious. I knew about the AS too, and then at first i attributed the physicality to that, but there was always something "fragile" about my body tissues. i always felt weak, soft bodied, and it really hurt when i injured (not to mention, i felt i injured more severely.) When my sons' paediatrician pointed it out in him, the lightbulb went off. Before then the label was simply "fibromylalgia". now, i'm trying to find out the type, there has been though it's "classic 2" i'm mild to moderately affected. not the mildest of, but lets say "grade B" if you were to grade severity from A-D. Ok I've said enough. Thanks for inspiring me and thanks for your reply. Take care!

www.willienelsonpri.com/images/health-3.jpg Check this out, and talk to your doctor about it... Yes this is Marijuana :) But do not take the medical benefits of this lightly. I have CF and I think it has kept me more healthy than I should have been over the past three years. My doctor is AMAZED at my health. She said I am the first patient she has seen that has never had to go in for a clean out at my age. Three months ago at my last check up my lung function was 107% which is greatly above the expected for a 21 year old male. I think she often wonders what my secret is but I am too scared to talk to her about it.... I strictly stick to eating edibles which is what you should look into it...

How come??