Have had COPD for nearly 70 years

Hi. Thanks for writing.

Yes I have PMR also along with Emphysema.

I do think the steroids play havoc with your body (and mine).

I am recovering from pneumonia at the moment and think although antibiotics are good Drs can drown you with them.

I have had five courses in six weeks and each one left me weaker and weaker.

I cant even get out for a loaf of bread and have no relatives or anyone to go for me so I do understand about not missing what you don't have and yes it would be lovely to smell and eat a piece of toast.

We can dream though and we can hope, no one can take that from us.

I sincerely hope you realise how much you have helped me with your writing this here. Thank you you wonderful caring person.

I am sending you love, hugs and lots if kisses. Xx

Good Morning Gladioli!  Thank you for your discussion.  I too, have tried to encourage others to "live each day with a positive attitude".  I know we ALL have been frightened with the diagnosis of COPD and I, too, was mis-diagnosed 2 years prior to the real diagnosis of COPD.  I think YOUR encouragement of telling all that you've had COPD all of your life may give many others encouragement that COPD is NOT the end.  I am 72 and plan to live to be 95.  Doing everything possible to forge ahead, medically and mentally is the key to fighting this disease.  Again, thank you!   XOX

 

Hi Gladioli30,

I too have not breathed normally since birth. Diagnosed at birth with severe asthma and spent my early life in and out of hospitals and underneath oxygen tents even at home. My stories are quite horrific as I can remember as young as 2 years as age and can also vividly recall one of the three times I was at death's door. When I gave birth at age 23, five months later I nearly died again and while in ICU, I felt that I would not breathe again the same crippled way I was already accustomed to...and it was true. From age 23 to 30, I permantly lost 70% of my lung capacity and since then they added COPD to my diagnosis.

Honestly, I have become quite used to not breathing normally and do not even dwell upon the possibility of dying from it, for I refuse to. Something else will have to kill me instead. I feel stubborn about that point, no matter how unrealistic it may seem.

As to the use of corticosteroids, there was no other choice but to begin using it at age 23, because it saved my life. However, 30 years later, the steroid use has caused both my hip joints and shoulder joints have died requiring replacement. My skin is so thin that one brush of a branch in the garden causes bruising. Sometimes little veins break open in my hands without provocation. The weight gain while on steroids is difficult to battle.

I avoid dairy products as much as possible to avoid extra mucus, I have never smoked but my parents did while I was growing up. I became disabled at age 27, then began college work and was later able to work myself off of disability ( I am in the US), but then my condition worsened, so I returned to disability income. Now I am 56 and adopted my three granddaughters ten years ago and these lungs continue to cripple me. Actually I am surprised to still be alive! But there are so many new medications that work like miracles for me! Spirava inhaler, Break inhaler and Singular are my main staples. I still end up hospitalized at least twice a year. Even though raising my granddaughters is difficult, I am thankful that meeting their needs keeps me from dwelling in self pity which is so easy to do.

I am with you in Spirit and share my story only so that you will not feel alone. Please know that I care about your suffering to breathe and know exactly what it is like to wish for a piece of toast and be unable to help myself. And when I see people smoking I wish to slap their hands because in my opinion, they are purposefully destroying their precious lungs when I would give nearly anything to be able to know what it must be like to breathe normally.

My best to you,

Dawn

Hi yes, I have PMR and now Emphysema. I was just told the steroids are worsening the chest problems