Time To Say Goodbye...: I have joined several... - COPD Friends

COPD Friends

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Time To Say Goodbye...

9 Replies

I have joined several groups looking for others who have COPD and want to discuss and share their stories! Those groups, as well as this one, has too many people who like to be Drs when they are not at all! Those of us with COPD may all have different experiences at different times, there is no set timeline of how and when things will affect us! At this time, there is no cure for COPD! If there was I am certain Drs would share this with us! I get so upset when others tell me how I should deal with my COPD and how I should feel! I thought these sites were for sharing stories of our illness, NOT a place for Medical Advice! Let's leave that to the Professionals! Thanks for listening and I wish you all well!

9 Replies
Toci profile image
Toci

I agree that nobody on here can or should try to diagnose a condition or determine the treatment of it but sharing tips on how to deal with the effects of it can be really helpful. I am sorry you did not hang around long enough to see this and benefit from it. I wish you well.

Sorry to see you go. I thought we were sharing our experiences. And as far as medical advice, I have only seen it in the sharing of what we went through and how we deal with it. I don't agree that doctors know what's going on with COPD. They aren't trained to cure, they are trained to treat. But that also is from my experience. The third leading cause of death in the U.S., just before COPD is conventional medicine. The "professionals" don't have the answers and if they did, COPD is a billion dollar industry, why should they want to find a cure. Just saying. Alternative therapies and others' experiences help me to deal with my problems. I hope you will reconsider. Take a deep breath and have a good day.

Karbear023 profile image
Karbear023

I understand your feelings , I'm there.

Shirat1 profile image
Shirat1

I feel compelled to respond to your post, first to say I'm so sorry you felt anyone was or would ever attempt to Tell you what you should do or should take. I have been here for a couple of years and when I found this forum I was a hair away from clinical depression. Not one physician or anyone in the medical arena had given me a ray of hope. I was end stage/ stage 4 with 17% lung volume. Oxygen 24/7 and all the meds that go with copd and afib. Sounds bad huh??? Well, I changed Drs , got a pacemaker and a pulmonist that didn't say 1 to 1 1/2 years but then I accidentally found these folks and I found a light beginning to glow, with jimmy, Vashti , Nikkers , toci, coughalot, and I could go on and on with those that told of their journies down this road and how after a while I found those that 11 to 17 years ago had the same diagnosis but were so positive and encouraging to those of us having a very hard time adjusting to the disabling effects of this disease. So I had been told it's incurable, and it is but you can, and I learned this on this forum, you can get better with Postive input, exercise , diet and meds. I am now about 30% lung volume and much stronger than before and these folks are a great part of the reason. I don't post often but I visit often and I am always lifted up. So thankful for you all!!!

Shirley

PastMeBest profile image
PastMeBest in reply to Shirat1

Hi Shirat1 well said. When I became ill with IPF I felt a bit isolated not knowing anything about my condition or having anyone to talk to about it. Then I found the British Lung Foundation forum on HealthUnlocked. It really helped me understand what I was going through by reading the posts and talking with people with the same illness. No one has ever told me what to do or take but if I have a question about something I know it will be answered honestly by people who know what they are talking about.

I am pleased that you have managed to improve your own condition. A lot of that is most probably due to having a good positive attitude.

Best Regards. John

Shirat1 profile image
Shirat1 in reply to PastMeBest

Hi John, must say my positive attitude is a result of the folks here and I still have time that are somewhat bleak when I'm having an episode. Between my breathing and my heart i can get a little down and out but then I've learned to, pull my boots on, kick myself in the behind and walk 5 to 15 minutes on the treadmill. Clears my mind and helps me breath better.

Also exchanging what we each experience is realllly helpful, comforting and you don't feel so alone in a foreign land.

Have an easy breathing night.

Shirley

LarryGee profile image
LarryGee in reply to Shirat1

How much did Medicare cover for u ,,,and if a person is in a nursing home ,will that person lose his house to pay for the medical bill and nursing home???

Moyz profile image
Moyz

Well done you , I have recently been told I have c o p d a bit shaken and stirred , but going to give it a run for its money, refuse to bow down to it, when it comes at me in the night like an express train , I get out of bed refuse to let my brain take over,I have a nice cup of tea ,and read what all you very brave people have to say ,you are a great life line thank you .

Shirat1 profile image
Shirat1 in reply to Moyz

Good for you Moyz!! Looking back 5 years to the time I was diagnosed, it makes me so aware of the journey I've been on and realizing it's been a time of getting aquatinted with my disease up close and personal. BUT I'm not going to die "right now", well unless the Good Lord says so. I learn something new everyday that may help. Also, everyday brings something different!!! I research some new something almost everyday. And it really interesting!!

Time to shut things down. Just had to admire your attitude and determination. You're going to do great.

Shirley

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