TO: The COPD Veterans

[Blossom/Jackie W.]

I'm directing this note and request to those of you who have been living with, and dealing with COPD for several years.
This is also directed to current, former and to those of you who frequent, or are, or were, loyal to any given forum. ALL of us.....

Especially to those of you who, what I consider to be, as having "been around the block." The struggles; whether breathing, meds, doctors, family, insurance, surgeries of a multitude of types, oxygen .... you name it. And; though I hate the word, those of you with co-morbidities.

I've gotten to know many of you over the years.... from many different places and situations. I know who seems to have "specialities" and in what areas. I know who I have learned certain things from and "new to me".

But; and most important of all, if you frequent forums, not just THIS forum; but any forum perhaps you "use to" but you don't anymore?

Perhaps you participated for a number of years..... perhaps you think...... "that question has been addressed before" and, possibly /probably it has many times.

Or; I'm tired of all the COPD *rap.... I want to just get away from hearing about COPD or dealing with it.

I understand.

However; if you're even "reading" my post here, you and I both know two things...... you "can't" get away from this disease AND; most important of all, it's still "in there." It's with you. That being; your desire to help if you can. (Unless of course your reasons are less noble but for the true vets of COPD I refuse to believe that)

YOU have lived with COPD.
You have shared info and knowledge and received same about COPD.

If you think back to YOUR diagnosis, and what you learned and how, and from whom, chances are a LOT of it was from forums. We were ALL frightened with we got diagnosed. We were ALL lacking in knowledge. We were ALL seeking info and, many of us continue to do so.

We/you, regardless of the forum; fill in gaps that the medical profession or government isn't helping us with.

But; it can get old eh?

The fact of the matter is..... people are still being diagnosed. Their fears and lack of info or knowledge is just as prevalent for them, as it was for us..... So; many of the same questions are going to come up. Many of those same questions have new twists now.

But.... YOU have a lot of the info they need and YOU can help many.

Over the years I've seen many of you "fall off" from "participating" from your favorite haunts. Again; I don't mean just here per se. But overall. And yet; you're a testament to "living with" and not having died which you possibly thought you were when you were first diagnosed.

But what you don't understand is that you have a WEALTH of knowledge and info. The kind of stuff that just isn't available to people w/o organizations or forums.

So; may I ask........ and regardless of the forum or message board you feel loyal to.... and there's a few of them, go therebut please help those folks who post seeking help or info. Especially the newcombers.

Participate, educate, share your knowledge......

You have it in you AND you can make a difference!

[skate4life]

Blossum, thanks for your post espcially for the Veterans. I joined last March and visit every day, I rarely post as I am in the middle of the road in my E., but am now retiring March 1st (65 in December) as I can no longer do my job full time. While I have learned a fair amount from the many posts, I still facilate about doing anything constructive about my future. Will see pulmy later this month and he has already expressed going to rehab after I retire, but am resistant to the idea.

Anywat, thanks for your post and maybe some will remember what it was like before needing oxygen

[chrisw]

I try to do just that Jackie - recently I have been frequenting a facebook COPD forum - often the posts there are strictly emotional support (and those who know me know that this is really NOT my bag) but the actual level of knowledge of COPD, what to do and what not to do is sadly lacking - especially as regards to the use of oxygen.

The problem comes that this does take a LOT of time, especially reading the posts wanting emotional support as these are often where the knowledge of the disease and how to live with is so lacking.

And then I find I am getting behind on this forum and on other support groups (I haven't read an Efforts post since December 5th - and that is one of the best sources for keeping ME up-to-date! Just not enough time and I am getting tired

[bobbioh]

Me myself I fight depression and sadly it gets the best of me during the winter. And my knowledge is all through living with COPD. I have not been posting as much as I used to. And I think most of it is personal and dealing with wearing o2 all the time. after I relized it has been a year now its put me in a slump. so bear with me this to shall pass. Bobbi

[susanny]

I, too, am finding I am not posting as much personal experience as I used to because by the time I'm done reading everything I am too tired to write anything. I'm finding this to be the "new me" since last summer. I am going to try to make it on here more than I do and see if I can't offer more. Thanks for the boost, Jackie. It was needed.

[John]

Thanks Jackie ;
I was told 3 to 5 when I first was dxed in 06 . Well I'm still here & plan to be for another 3 to 5 & hopefully another 3 to 5 . Two things are happening here in my live .Yes complacency sets in, but some times I just get emotionally tired of this affliction on a day to day bases & just want to ,as they say "sit on the bench and watch " . I do remember coming in here everyday in the beginning just to watch others get better & to get the message of hope that I to would get better if I did certain things . I hung on every word of the members who I thought had great knowage of the this dilemma ,not realizing that sometimes they were just 10 min ahead of me ! I thank them everyday for sharing . I believe the hand of help will always be held out to the newcomer ! All they have to do is take that hand & join us on the broad highway of life . I love you all & thank You for being there for me .. My life would of been defiantly of less quality & love if I had never met all of you

[Blossom/Jackie W.]

I hope no one read(s) what I posted here as a criticism becasue I assure you it's not meant to be. Rather; it's meant as a gentle reminder. And I certainly know the doldrums and depression of winter..... and yes; we do get tired of this "affliction."

But whether you're a regular poster, or a visitor/reader, if you have info and "lived/learned" knowledge, and you see a post and someone needs your input, please don't be afraid to share. Just remember to check the COPD portal areas when you come in. Only the "latest" last "post to" is shown so you have to click on the category to see if there's other recent posts.

And; as for newcomers, please don't ever be afraid to ask questions. There isn't a one among us who hasn't "been there" and, in many ways, we're "still there" Something new will come up and we will need info as well...

Because of our main Organization, sometimes I get to hear some pretty sad, sad things. At times it just centres around lack of knowledge or understanding. Other times I'd like to grab their Drs by the throat. Some stories are just flat A** downright sad.

Quite often I'll point them here because there's so much info avaialble. And; I have to say, I also get to hear from people who feel they have learned/gained so much from here.

I just don't want any of you to fall away from what you do well or are capable of ..... winter or not.

If you need a warm fuzzy; it's a good way to get it I assure you!

Finally; Skate......I'm curious..... why would you reisit Rehab? Heaven knows we ALL need it though few get into a structured program (at least here in Canada.... maybe 2% of the COPD poulation does) But; whether in a structured environment or at home..... as long as we're "doing it" I do hope that you are exercising regardless.

[wendyco]

well heavens knows I am one of the "old timers"....have "known" I had copd for years. since then have had a spinal fusion, a TTO, LVRS and a chest wall hernia repaired. I have been in trials and have had mystery illnesses.....3 bronchoscopy's....you have to keep on keeping on.

Jackie, I look at several forums everyday and see if I can be of help, if so I respond. but the main reason I stopped participating so much is each forums seems to have an "expert" that knows everything and it doesn't matter what others say, they knock them down, their opinion is the only one that is right. I just got tired. and I have priorities with what air I do have left... of course it's the kiddos and animals.

But, anytime I see someone struggling and no one has responded to ease the fear, I always do....

[Blossom/Jackie W.]

Thanks Zoom.. I know you do. And; I also know that even if you haven't seen a post I can call on you for input, particularly in certain areas of " Lived expertise" shall we say since I've gotten to know a lot of what you've experienced. And yeahp.... .... I think that makes you a veteran of a few tours... ;D

Same thing with Chirs.... and oxygen. I know that even if he doesn't see a question, he'll respond if I contact him and ask him to have a "look see"

Here, as with all Pro Boards, it's laid out differently than other forums so it's easy to miss unfortunately....

[aero63]

Criticism...no, gentle reminder...yes. I am guilty of the above sometimes, other times I think I posted because I read, other times I feel everyone has said what can be said and I would only be repeating.

I was visiting everyday, but then I switched to every other day. I thought it was getting away from the COPD. I think about, and heck, I think I just need to get away from my self most times, .

[Deleted]

This is a wonderful post, Jackie. My DX is almost 4 years and it is groups such as this that has furnished most of my knowledge as to how this disease manifests itself. I can read the internet and get a lot of factual information but the most valuable that I get is when someone posts their personal experience. That is "telling like it is" and we can do better if we know how to help ourselves. I get the emotional support from my family and friends and from you, I get all the rest!!!!!!!

Thank everyone of you that has helped in ways you may not even realize.

[Blossom/Jackie W.]

Christal; thank you. That's a lovely post and I know the folks here or anywhere/any board (for the veterans of COPD) will see it and it'll remind them the good of what they do, just by being involved and "doing". And the doing is "living with" and sharing their indo and iknowledge.....

Again.... TY for helping me to remind them.

[linndie2]

We are all a part of this tapestry, the copd tapestry and each of us ia blend of the finest threads of experience.

We get down we get up with a little help from our copd canada friends. Having had lung cancer twice I'm still here, on o-2 getting tangled under every opening the couch, the chairs ect.

Some days are good, some not so good and some are just fantastic. I slid down along slippery slope of depression and have finally climbed out.

Copd, cancer depression, when we have no where else to go we come up, and start a new day in between we have family problems, money problems, but above all we have each other and before you know it the sun rises again and we can sometimes choose how our day will go. I get so much more support here than in my real life. I try and give back, i hate to see people in pain, or sad or scared.
You have all saved me so many times, most of i am grateful for all of you. even when i go away for awhile your all still in my heart. I just get plain scared sometimes. Love you all Linndie

[susanny]

Your words say it all, Linndie. I love you, too. And I really miss you when you go away for a while, ya know.



Sue

[linndie2]

Thanks Sue


On CI i have sent people medicines, sprivia, advair, inhalers who had no money for their scripts, one lady i sent her a few bucks, yes she was really struggling, in return i have been repaid with friendships and just knowing i made a difference in someone's life makes me grateful. I hate copd but the one good thing about it is............. we would have never met, I beleive everyone crosses your path for a reason, some stay some leave some come back but it makes you who you are. We are in charge of our selfs. I try and get up as postive as possible, and grateful for waking up. When i see my Grand daughters it makes me want to try harder to not merely exist but to live, and being around them you can't help but smile ;0

[John]

We love you too Linndie

[Suzanne (Suz)]

Jackie your message is clear and concise and true to the blue. I don't come on often that is true, I used to, but then got consumed with my teenage daughters *they are a handful* and when I logged in today I had a message about the 3 day diet I had posted months and months ago as her message to me was dated September - I did respond to her with all my knowledge that this diet may work for some and may not work for others and had a few suggestions of mine to help her with the weight problem she has. I don't think I was crititcal but a little helpful as I am not a doctor, trainer or anything, but managed to have lost 8 - 10 lbs in the last year and maintaining my weight for now.

I will try to come more often and help out the best to my knowledge, but I am no veteran and am still learning about COPD, but love to help out too.....


You guys are ALL wonderful and it was nice to stop by tonite and I will talk to you guys very soon!

Love Always, Suzanne from Keene Ontario