I think the best analogy for a family member to understand COPD would be to actually have them wear the 50' cannula around the house for a day and experience: 1) trying to avoid people standing on their tubing and yanking it when they do; 2) having to walk back the way you came so the cord doesn't get wound up around a circular path; 4) having to flip the cord like a lasso to untangle it; 5) twist the cord from time to time to uncurl it from all the right hand turns we make automatically during the day; 7) use nasal spray to ease up the dry nostrils; and lastly, 8) scare little children who come to the door. (Actually my husband just tells them I'm a mermaid and I need the salt water supplied by the cannula.)

To be honest, I don't think anyone can truly understand COPD unless they experience it for themselves just as we can't fully understand whatever ailments, visible or invisible, that they might have. As cumbersome as COPD is I am grateful that I wasn't born in a third world country where I probably wouldn't have the benefit of the advanced medicines and oxygen concentrators that I have available to me.

FYI, I have three concentrators: one for going out (Inogen One G3); one for around the house (Inogen home unit); one for using in hotels when I travel in U.S. & Europe (Sequal Eclipse - portable continuous air), as well as the oxy-view oxygen glasses which has an almost visible cannula. My MediCal pays for the two Inogen machines and I bought the rest and write them off my taxes.

Wishing everyone a blessed day - with easy breathing - and determination to stay active and alive and have some fun!

stemcell treatments are still unproven...pulmonlogists say the body just can't reair damaged lung tissue as of yet...studies still ongoin...just pray

Tell them to read this print it and put it on your frig.

SICK LUNGS DON'T SHOW
(adapted from 1998 EFFORTS Brochure by Edna Fiore)

I may not look sick, BUT....I have Chronic Obstructive PulmonaryDisease(COPD)
What is COPD? It includes such illnesses as emphysema, chronic bronchitis and sometimes asthma. It is primarily characterized by extreme shortness of breath.

LIVING WITH COPD IS VERY RESTRICTIVE
It means having to avoid strong odors, smoke, flowers, perfumes, cleaning agents, paints, solvents, vehicle exhaust, shaving lotion, bath powders, incense. I also have to avoid temperature extremes or wind, crowds, molds, and dusty places because they make me short of breath.

PHYSICALLY: Living with COPD can mean having difficulty walking up stairs or inclines, not walking very far, being unable to rush or "being rushed" tiring easily--especially if things last too long, being unable to tolerate tight clothing and the inability to talk for any length of time.

SOCIALLY
Living with COPD can mean coughing in public which attracts attention and embarrasses me, having to use or wear devices or equipment, or take medication which invites public comment (oxygen, cold weather masks, inhalers), being concerned (often excessively) about contact with cold or flu germs, and having my friends make short, pleasant, smokeless visits

EMOTIONALLY:
Living with COPD can mean crying easily, angering easily, becoming frustrated and impatient because I can't do the things I used to do. Feeling resentful when others tell me, "You don't look sick." It can cause me to be panicky and tense, and to become dependent and demanding because it's frightening when I can't breathe.

COPD AFFECTS MY FAMILY ..
By having to adapt to my physical, emotional, social and environmental needs and limitations, often having to leave social functions earlier than they wish because of me or sometimes never getting there and by having to check out all of the details in advance, getting places early and all the while having to remain calm and reassuring at all
times on my account

REMEMBER: I may not look sick but-- SICK LUNGS DON'T SHOW!!!!

I have always tried to explain what COPD feels like in terms I felt each person could identify with on a personal level. Sometimes they seem to understand, other times I see glazed eyes telling me they just don’t get it. Forward to Christmas Eve this year...I’ve been caring for my husband a week post op for a kidney transplant. Then cooking, cleaning, tending to the house and running him to the transplant clinic every other day for 4 hour appointments.
So, we have our son and his family over and right in the middle of putting out food...bam....no breath! My son looked at me and said “geez mom, you look like you’re suffocating....what should we do?”.....he was frantic, which is the last thing we need when we are trying to deep breathe ourselves out of an attack. My daughter in law was stunned. My grandson was crying because his dad was loosing control. It was a hot mess.
After I caught my breath and everyone calmed down, my son remarked he never realized when I would say I need to catch my breath that it actually meant no air could get out to let air in. He said he got an unexpected gift of a greater understanding of COPD. Teach by example works.....it sure made an impression. Bet I don’t have to try to explain it to them again. Bet they share it with friends. Bet they are more understanding when I decline outings I know I can’t enjoy for fear of becoming breathless.
Have a blessed week everyone...laugh often to feed your soul with joyful medicine.

Like a fish outa water