New: Hi! I was diagnosed with COPD 10 years... - COPD Friends

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Rosann profile image
22 Replies

Hi! I was diagnosed with COPD 10 years ago, a widow for 9 years. I have done quite well until the last 2 years when my life became very stressful due to personal family issues. I dropped to Stage 4 rapidly, and it has affected me in so many negative ways. It's so true that if you don't have it, you can't really relate. No one wants to be around someone who can't "keep up" or be in a fun, happy mood all the time. I have always tried to be positive, and never ask for favors, but it didn't make a difference apparently. Now, I just try to get through each day and sometimes I'm glad I don't have anyone else to take care of. More than anything, I pray for a cure someday so no one else has to live with this disease. Thanks for your time.

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Rosann profile image
Rosann
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22 Replies
valiejean profile image
valiejean

I totally understand where you are coming from. I get so sick of other peoples happiness and laughter while i'm sitting there just trying to grasp a breath. I am normally a happy person but sometimes it's just so trying. good luck. I am very severe copd for a decade now full time oxygen/ meds dragging around 10 lb backpack everywhere i go. getting clotheslined by that damn canuella....makes me very short tempererd.

Cynners profile image
Cynners in reply to valiejean

Oh wow..I can't tell you how many times I've clotheslined myself...I get so frustrated and throw it like a 2 year old sometimes lol. Thank goodness nobody is here to see me do it. Nothing worse than having to go to the bathroom bad and the 50 foot choRd is hung up on something..I throw the canula then too..I can't believe I admitted that. I thought I was the only one that had trouble with these things

tennkaren profile image
tennkaren in reply to Cynners

Totally know where you are coming from. I have the same problem with the oxygen cord it gets caught up and also get my feet tangled up.Praying for you. Have a blessed day.

nana131 profile image
nana131 in reply to tennkaren

Or my daughter thinks is's funny when I'm walking by her and she puts her foot on it !!! And I get clotheslined too !!! I get so mad but when she starts laughing , I start laughing with her..... :) :)

Brapp profile image
Brapp in reply to Cynners

Wow! Can I relate to your post Cynners. It sounds exactly like what I would say. Frustration to the max and nobody can understand the full magnitude of hopelessness we feel. Sometimes the deep anger comes out and we throw the cannula or other things. I do understand and not only feel put share in your frustration and pain. Praying for all of us.

valiejean profile image
valiejean in reply to Cynners

you are no alone sister.............i spazz out on a regular basis...i try to coil as i walk but for sure by the time I get within ten feet of my target it stops me by hanging up on something............grrrrrrrrrrrrrrr good luck

tennkaren profile image
tennkaren in reply to valiejean

Totally understand where you are coming from. Beside being on oxygen I have to depend on a walker to get around. Will pray for you. Have a blesed day.

lessido profile image
lessido in reply to valiejean

Be careful with he canaille. I have a friend togged tangled in it,fell and broke her neck. I have gotten it tangled around my feet.

Cynners profile image
Cynners

I know how it feels. I'm stage 4 and divorced. I live alone with my chocolate lab that runs my house. I'm 51 and I am also the one left behind because I can't keep up. I am glad I'm alone because I can't take care of someone else. I have a heck of a time taking care of myself. You are not alone! For so long I thought I was the only one feeling like this. Hugs my friend..hang in there

Hi Rosann, Yes this disease does take an awful lot out of people who have it. The people in our lives, including doctors, nurses and therapist, can never understand what we have to deal with. Have to walk in someone's shoes, to understand the problem. Very difficult to be positive, when you can't do like everyone else, and find yourself gasping for breath. I do pray for a cure, not only that no one else ever get this, but that it would help me!! Wish us both well.

tennkaren profile image
tennkaren

Know what you are going through. Am on oxygen 24/7 so can't go to far. Have to depend on others for help. Have to ride the bus when I need to go to the store. Don't mind riding the bus the waiting for the bus to pick me up I have to wait for them to pick me up. So spend more time waiting for the bus than riding it. Will pray for you. Have a blessed day.

REWW profile image
REWW

I pray for cure as well. Have a hard time just walking

Brapp profile image
Brapp

Rosann ...I too am facing challenging times and understand how you are feeling. I hope and pray you can find some measure of happiness and continue to seek positive ness. Hopefully one day they will find a cure but until then I wish you all the best and better breathing.

Rosann profile image
Rosann

I have taken probotics

Rosann profile image
Rosann

Sorry... I accidentally posted too soon when trying to correct my comment. I take probiotics, and eat clean. No refined flour or sugar. I think that is why I did so well for so long. But due to age, stress, and the progression of the disease, it has started taking a toll on me. I do not use oxygen, and do what I can do, when I can. I'm so glad you have found ways to breathe easier.... I know how positive it can be.

ti24red profile image
ti24red

DEAR ROSANN, SORRY THINGS HAVE NOT STARTED TO GO UPHILL YET.BUT WITH YOUR POSITIVE ATTITUDE IT SOON WILL. THATS HALF THE BATTLE. YOUR PRAYERS ARE SOON TO BE REALIZED.THATS WHAT I READ AT REV. 21;4. MY COPD IS LIKE YOURS IT TAKES A DRASTIC DOWNWARD TOLL.THIS LAST TIME HOSPITAL COULD NOT STOP MY LACK OF BREATHLESSNESS.I REALLY THOUGHT I WAS GOING TO DIE. THEN I REMEMBERED MY GOD JEHOVAH. AND I STARTED TO REMEMBER HIS PROMISES AND NOW A YEAR LATER I HAVE SLOWELY IMPROVED. ROSE

PteW43 profile image
PteW43

Good Morning Rosann and all - Although I signed up to this site a couple of months ago I have only just today put up a post. Trying to find my way around I've come across the daily posts. Think I know what I'm doing now lol. I wish you well and all on here who suffer with COPD.

Hi Mickeys mom, That's a big message you posted, one that will give a lot of people hope. When you posted that, do you know if it is true? Did you try this for yourself? Call people at New York Presbyterian and they don't know anything about what you have posted. I am wait for my Doctors office to get back to me about this. If there is truth to this, she would know. I am being treated there for COPD an Pulmonary Hypertension. I hope that I can validate what you have posted here, not only for me, but for the many others, who are suffering.

Please, check your information again and see if you can get more then what you have posted?

Thank you

Brapp profile image
Brapp in reply to

Bigjohn23 I am also being treated for COPD/Pulmonary Hypertension and would be very interested in getting some more information on the post for the "cure". I can't find any information but will discuss with my pulmomologist next week.

in reply to Brapp

Yes, can understand you wanting and getting more information. The word "CURE", for me is unrealistic, at least right now. Can't let that word, get my hopes up, only to find out it may happen eventually. If some treatment works, 10 years from now, not sure I will be around, must less able to use it. Have looked at the site, MICKYSMOM, mentioned, but I need more information. These people she mentions, I have never heard of, and I have doctors at NEW YORK-PRESBYTERIAN. Where this site is, they are asking for money. Before, I get my hopes up and shell out money, need more information, at least for me. MICKYSMOM, may well be right, but I haven't seen that, to my satisfaction. Like you, am going to bring this to my doctors, when I have my next appointments.

Brapp, would appreciate it, if you would keep me up to date on what you find and I will share information with you and the others on here.

Brapp profile image
Brapp in reply to

I wish with all my heart that there would soon be a "CURE" on the horizon. While I know it takes money to do research, I fear being scammed or at the very least donating to a bogus study. My pulmomologist is at Temple in Philadelphia, a teaching university/hospital and has never mentioned the "CURE". We have discussed clinical trials, so either the "CURE" has not progressed that far, is wishful thinking or something else yet to be determined. Hidden I will keep you and others apprised of any new information I garner. Be safe and breathe better.

frissykat profile image
frissykat

I see your note is 2 months old but I just got it so wanted to respond. your very brave, I'm sure I could "make it" without my family but I wouldn't want to & they do make it way easier for me. The only thing they don't do IS CLEAN MY HOME ! Good luck Rosann

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