To bobbioh and everyone else

[paul]

Hi
first of all thankyou to everyone who replied to my first post on this forum.
I do hope that others continue to do so.

I saw a post from bobbioh who had replied to someone whos a year older than I am and said that when they first had there DX they were 42/43 ?
And now at 47 thay they are severe copd.
I was trying to get my head around what my Dr told me that he believes I can get into my 70s plus without becoming disabled by copd and ending up gagging for breath.
Also from some of the replies which say that he is right.
It's not that I do not believe him. Or any of you. My minds still on all the googling I have done in the last 3 months which say I will not live long at all, and that the most is 10 years with a fev1 of around fev1 50%
And since seeing bobbioh reply to someone that they have become severe in the last 4 or 5 years terrifies me even more so.

Hope to here back from you all soon

Paul
42 yrs of age

[Blossom/Jackie W.]

Hey Paul; I sooooooo hope you slept a bit better last night.

Look; I'm gonna go out on a limb here and I'll probably be criticized by some (though those who know me better will understand where I'm coming from).......

I think I know what post you're referring to.....

Anyway....

You have to understand that people seek help (re: COPD) at different times and reasons. when they suspect.... I.E.; someone may not be "active" then all of a sudden they "become active" becasue they feel they have to (they may not be feeling well in the breathing dept) then lo and behold they find out they have COPD....... it might be mild; and it might be severe!

Someone else may have been very active and start having problems and finally get tested. Here's your baby! "You have.... COPD"

Others postpone; knowing, maybe for years that something's wrong but still smoking so they don't get tested....

Then there's some that figure...."Hey I quit smoking 5 or 10 years go"... Now I have COPD???

How we each get here, or the reasons/rationale/ is different! So too; is the stage when we finally do get tested.

For me.... I was 39% 5 years ago when I was diagnosed and I blew 41 after the bronchodialator. I delayed getting tested, and actually it was missed by the medical profession for awhile. I got on proper meds and it brought me up a few points.

My biggest problem isn't COPD for I feel that in actuality it's something (COPD) I'm more in my control of (in terms of managing and living with....) And there isn't much I can't or don't do!

As for many of the members here..... believe me you don't want a laundy list of their health ailments beyond COPD yet they keep on feeping on! But; the biggest thing; at least at it relates to COPD ... they manage it.

Key words here Paul.... "living with" and "managing"...

I do/we all do...... most things. We get smart, we get educated.

Like I mentioned before... there isn't a "one size fits all" with this disease.

You have gotten what I consider to be some of the best advice from folks who have a LOT going on, and a LOT of "lived" knowledge. These are folks who know better than any piece of literature put out by anyone, anywhere, because they're PATIENTS. They have 1st hand knowledge and experience.

Now; (and here's where I may be criticized)....

I see it as you have 2 choices dear.....

Learn, live with, and control COPD, OR
Suffer with COPD and miss all those years and things you're afraid you "might" miss because, frankly, you will if you don't get a handle on this.

You're dwelling on the negative for reasons unknown to me. Maybe something personal that's happened beyond COPD?

Most folks will yes; read the negative, but also seek out the positive becasue survival is human nature and it's so ingrained in all of us.

So; whatd'ya say? Wanna learn to maintain being active, involved and loving your life?

[the bear]

Accentuate the positive and eliminate the negative would be a good start Paul.
How we die really does not matter. It is how you live your life, no matter what, that matters most of all.

[paul]

Hi Blossom
thanks so much for your reply.

I may be wrong in saying this, but I want to get it off my chest.

May 2001, a call from my dad, he wanted me, it was 3am,,, I ignored the call. I was tired after flight the previous day, and I was due back in work at 6am. I needed my sleep.

On my way to work, I called into my mum and dad, and found my dad unable to talk, unable to breath hardly at all.
18 hours later he passed away. If I had gone to him at 3am, he may still be alive today.

four years later, Christmas time, my dear mum passed away, she drowned on her own fluids. I couldnt do anything for her. I tried to no avail.

6 months previous, a good friend and work collegue died of lung cancer, he was 42. The dx was out of the blue and so unexpected.

Christmas 2006, I had a call from a good family friend, he was so full of life and a great help to me after I lost my mum. The next day, his brother called me, my friend had died.

1978, I was 11, my best friend also aged 11 died of cancer.

1979 I was 12, a kid in my school and a freind, died of leukimia

1981 I was 14. a friend who was 15 died.
1981 my couson aged 13 died of a brain hemmourage.

When I was around 6 years old, I found a guy in laying in the road, he was dead.

2000, I was 33. A good friend who was also 33. Dropped dead from a asthma attack.

Viruatally all of the above resulted in terrible suffering.
Sorry for airing my baggage. But I need to.

You guys are all amazing I mean that. I just keep picturing myself gasping for air at some point before I am 50, like I am holding my nose and breathing through a straw.

Paul

[paul]

My sofa, that is in my living room, was as good as my dads death bed, thats where I found him.
It was also my Mums death bed. I can't get rid of it.

Your the first person I have told.
paul

[bobbioh]

Paul, I will be back in a bit to post a few things to you I think may help you along. Bear with me please. Bobbi

[bobbioh]

Paul, First off I'm sorry for your losses, I can match you in tragic things in my life. But I have promised myself a couple years ago, I will not focus on the bad things or the losses in my life. I will only forage forward and onward.
But I will share with you my Dx with this disease. I had my Daughter take me who at the time was 17 yrs old. The Plumo, Laid it all out, Said I needed a TX NOW! I left Sobbing openly, And thats not me. I'm a strong women and rarely show my weak side. But I was reduced to nothing. I was so scared. I wanted to run and hide. I wanted to end it all and not fight. I cried for days. Researched everywhere. Was sure it was over. But like you I found a web site. It was larger and more in personal. I followed Phil our founding father here to this site. I was 4 th to join. I'm very proud of that. I have found the friendship and support I need here. I have also lost a bunch of friends here. And that pains me greatly. But I know they are free now. And I know they in trust me to Carry on their work. We all have each other here. We are all free to be ourselves here. I welcome you and I'm telling you put your fears and personal pain away. Today is the first day of the rest of your life. Focus on what you CAN do not what you cant.Work on self improvement, It could be exercising, or your diet or both. Maybe you would like to work on COPD information to better your condition. Life's to short grab on and take off as long as you believe it, it is so. A good friend of mine used to say I said it I believe it so its is. Live by those words. You can do it If I can anyone can. Bobbi

[wendyco]

Paul many folks here have given you very good advice and we are all real....we are going through this disease just as you are..it has been mentioned that we are all in different phases of this and no two go through any of this the exact same.....but we have one thing in common besides this disease, a will to fight and live a good life!
If I sat around fretting because I was afraid I might not live to 70, I probably wouldn't want to live to 70 because I would have become a nervous wreck......you can choose to live and grow and enjoy or you can choose to mope around and live in the past with death and depression......life really is a joyful, beautiful thing and perhaps you need some professional help to get you past this, many with copd need some extra help so nothing out of sorts with doing this.............we are here....I was diagnosed at 46 and now, 12 years later, life is still good and I expect it to be good for a long time!!!!!!!
Life IS what's happening while you wait for life to happen

[Blossom/Jackie W.]

Paul; please check your PM's (your private messages)
You'll see the link at the very top where your name is; it'll say "Messages"

[Deleted]

Paul,

It is sad you found out abouth death so early, we all have suffered losses,you should have been able to move forward with your life ,It has consumed you. , then you find out you have COPD. I agree with Wendy, mabey you need professional help. we cannot change the past, andmabey we have no clue what tomorrow will bring, all we can do Paul is live today, everyone here has been through the rough roads. A lot of people take meds to calm them down, for depression ect. Know what? You have to take the first step , and take some control of your life. Many people have shared so many things with you, but you are are not listening, and thinking about the very real and personal things that were said. You are suffering and carrying a huge bag of sorrow, Just wish There was something someone could say to you to make you understand, you are not alone, help your self so we can help you carry your load. I didn't mean to be so blunt but Paul we all care.

[paul]

I'm sorry everybody

I wish you all well

God Bless

Paul

[Deleted]

Paul,

You have nothing to be sorry for.........
We all honestly deeply care about you. I know you have had many many tragic events in your life. I was trying to make you see, that you deserve so much in life, you deserve happiness and peace. We will try our best to help you, just try and see the glass as half full, not half empty.

Please do not go away, I am sorry if i didn't say things correctly, my heart and concern for you as a fellow human being was all i was trying to make you see. You deserve a nice life.

(((((((((((Hugs))))))))) Your friend Linndie

[Deleted]

Hi agaiun Paul,

I was wondering if you had any hobbies? Do you read? Sometimes we need things to distract us. You mentioned a sister, are you guys close? Mabey you can go to lunch, or a show?

I wish I had the right words to express what my heart is trying to say. I love crosswords, I do the hard ones, and it keeps my mind off a lot of things. We all experience a little depression in our lifes, but Paul you have to find things that make you happy. Hope to see you by the fence soon! ((((((((((( Hugs) Linndie

[the bear]

Paul, Paul come in Paul. The bear is calling. Come in, come in.................

[paul]

Just want to thank everyone for all the support they have given me. I took a phone call yesterday and that made me realise that my thoughts were correct. Thanks everybody and I wish you all well,

[Blossom/Jackie W.]

I don't know who might tell you those things which are totally eroneous but sometimes people only hear what they want to hear; even if it isn't the truth.

We'll be here, waiting with open arms, when you want to join us and learn. And; in time, you can help educate others as well.

Jackie

[paul]

Jackie, you will have a private message in a few mins
Thanks
Paul

[Blossom/Jackie W.]

This thread is closed.
I have been in contact with Paul and I hopefully he'll join us in other areas. I know you will welcome him.