For me crying is mostly has come to tears just rolling down my cheeks. Not much sound anymore. Lovely disease!! As are all I guess.

I did not mean to add this but for those that say "do not let this disease define you", I say BS. How can it not? You bend to its will each day as do family members around you.

I want to meet the person that has stage 4 emphysema and can say with a straight face that this disease has not defined who they are or better yet tell me they have a definition of define that has totally escaped my world.

Ok, my rant for the time being.

Leonie69, Never heard it described as a dinosaur but then I can't hear it too well so you could be right. LOL

Sorry to hear of the death of your friends. No matter when, how, why - it's painful. I've had a few deaths in my life recently with a few people from this group.

COPD doesn't control my grief - I will not give it that power.

Sorry for your loss.

I am so sorry for your loss.
I can relate to the crying---it hurts physically and emotionally.
(((HUGS)))

So many thanks for your warm words and wisdom.

Yes, LilEllie, you said it like it is. I've tried hard, very hard, to put on a brave face and a sunny smile to not allow this disease to pick away at my life. But it does, relentlessly. Since being diagnosed I've changed over the years, particularly since been hooked to the O2 machine like a dog tied to a pole in the back yard. I know there are many things I can still do, even at a slower pace, but there are also real meaningful things I simply can't do - like having a good cry and letting it all out in huge howling sobs. Like seeing my world shrink to the size of a postage stamp because I get around much. Forget a game of tennis, a cuppa java with my pals at the mall, an outing to a movie or a stroll around the flea market, spending a whole day in the kitchen baking and cooking up a storm, or good 'ol roll in the hay with my old boy. Couldn't even attend my daughter's bridal shower because my portable O2 wouldn't have lasted long enough.

So yes, whether I like it or not, this dang disease certainly does define my life and dictate the boundaries. I've shouted my damndest against this disease and challenged it to dance to my drum but it's power is undeniably greater than I can control.

So when my on-line friends leave the room it hurts real deep and makes me realise that this disease isn't playing games. My only defence is a positive attitude, a quirky sense of humour and the love of my family and friends.

Okay, I've vented too and bounced my frustrations off the wall.. :-) Thanks again to all. Enjoy a happy breathe-easy sunny day.
Leonie

so sorry for the loss of your friends....our disease is so terrible & it does rob us of so much.

(((HUGS)))
Michelle

I truly feel your pain as I sit here with tears running down my face. I swore 15 years ago, after a devastating divorce that no one would see or make me cry again. Well guess what? I lied. Every once in a while I have a real good snotty nose cry and a pity party that no one wants to come to. I think we all have these days (some of mine last longer than days.) Do you know what I find the most frustrating? That this disease has made it so I cannot yell very well so I cannot even yell. rant and rave and howl at the moon. My other "whine" is that the kind man I live with does not understand what a good cry can do for me. So LilEllie, when you need a shoulder or want to come to my Pity Party - just call. Another thing I like is to be told I am at Stage 4 - not End stage, which is what one thoughtless, heartless Dr. told me.
Love and hugs
Carolyne (the one who just blew her nose, wiped her tears and is/was always the one to say something funny or off color - gonna try to find that person again.)

"I did not mean to add this but for those that say "do not let this disease define you", I say BS. How can it not? You bend to its will each day as do family members around you."

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In one breath I agree with you but in another I don't. We are fortunate compared to many others. We have a disease that still gives us many years to enjoy our familes and appreciate life and help others. When I get in a pitty party I think of others that have a it worse than me. I push those negative thoughts out of my mind and thank God for what I have and what I can still do. If you have your mind it is up to you how you live and view it..

Yeah....it was getting me down...same on my FB group..but I just accept it now and share the journey....at least we are speaking the same language...

Yes, Charley61, I agree with you on every count, but please don't overlook those of us who still struggle to come to terms with this insidious disease and how it affects every aspect of our lives and the lives of those around us. Some of us find relief and strength in a good old cry with a few F-bombs thrown in. Not all of us are as tough as coconuts or as blase as others. So please cut us come slack and exhibit a small degree of tolerance and allow some space to vent our frustrations and fears.

Youall pretty much agree with my personal view. We all think well live forever, but reality tells us it aint gonna happen. Im 70 which only mean two things:
1.) Considering the way Ive lived it is pretty amazing I made it this far, and
2.) Looking around at some of the horrors others have to contend with COPD aint that bad.
However, If I was 50 something or younger Id likely feel very cheated.

Dont think Im tough as coconuts or blas, but understand how one can appear so when they attempt to console someone who is really down. Not sure anyone can help. I remember a time I lost my job, the car broke, my wife was sick with a two-year old, and the rent was due and a friend told me to Cheer-up, it could be worse. I wanted to punch him. I can remember that moment of rage like it was yesterday = although all the other feelings have long past. LOL

I am one of those that literally flinches when I hear the words "so and so has it worse than you". It seems like an attempt to negate someone's suffering, and don't anybody dare say we don't suffer with this dang disease. The extra time you see as fortunate I see as my family having to watch me deteriorate from the vigorous, playful, downright silly mother they grew up with a weak, almost invalid who has to sit on the sidelines and watch all but the most passive of life go by, while they suffer along with me knowing they can't do anything to help me.

I'm not in a total wallow; I do thank God daily that I can at least still get myself to the bathroom, do some grocery shopping, and marvel in the change in relationship with my children. But being grateful that I'm 'at least still alive' shouldn't keep me from grieving what I've lost to dumb ol' COPD. And while I don't let it define me per se, it has changed the definition of who I am, and I resent the heck out of that.

Hmmmm. I think I worked my way through several of the stages of grief in one post. Hooray me!

I often look at how COPD has changed my life even though I am still in a "moderate" stage they tell me but I feel changes every month now.
I am 76 and amazed that I made it this far - like Gnott who is still a youngster after all. lol I do feel cheated of a normal social life, several activities I can't be a part of any longer, on and on, but I have to agree, to some extent, that it could be worse.

I was sole caregiver for my husband for 18 months after he was diagnosed with advanced, inoperable pancreatic cancer. They say it was a miracle that he lasted that long and I have to say that I never saw an uglier cancer than that one and they still have no really good treatments either. My husband was one of the strongest, most courageous patients I ever saw and it still breaks my heart to think of what he went through.

Still, I remember the horror stories of what the final stages were like with Dennis and several others. I dread what may be coming my way and wonder if my age will take me out feet first from some other health issue instead?

As I used to say when Don was still alive "One day at a time and make the best of that day." Some days it works too. LOL

I have always been a dyed in the wool optimist. I awake every morning with the affirmation - vida es buena - life is good.

I try to live every day like it was my last day.

When you give up you're a goner.

Here is a share while we are on about our feelings....Something to think about!!!!!!
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Yes, it's important to stay hopeful and positive . However, we are mere mortals..it's OK to have your melt downs ..it's OK to say it's NOT ok and you're not happy..of course we count our blessings..but I have to be honest with you. there comes a time when the loss of quality of life and losing that precious independance..being so totally dependant on others when you have been the 'motivator' and ' doer ' and go getter all of your life..well IDK about anyone else..but I can only " fake it " for so long..Tears of a clown..? yeap ..ok..I can smile on the outside and mourn privately on the inside for only so long..I cant say these things out loud at home..so I"m saying them here..I have to let it out..or I"m gonna bust.