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Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐ŸŽค Honesty Dayโ€ฆ letโ€™s talk about it.

Todayโ€™s a good reminder that sometimes the strongest thing we can doโ€ฆ is just be honest.

With COPD (and any lung condition), itโ€™s easy to fall into the habit of saying โ€œIโ€™m doing okayโ€โ€”even when things feel a little off.

But what if today we tried something different?

๐Ÿ’ฌ Being honest with your doctor
โžก โ€œIโ€™ve been more short of breath lately.โ€
โžก โ€œThis cough feels different.โ€

๐Ÿ’ฌ Being honest with your family or friends
โžก โ€œI need to take it easy today.โ€
โžก โ€œI might have to sit this one out.โ€

๐Ÿ’ฌ And maybe the hardest oneโ€ฆ being honest with yourself
โžก โ€œIโ€™m tired, and thatโ€™s okay.โ€
โžก โ€œI need a breakโ€”and Iโ€™m going to take one.โ€

Honesty doesnโ€™t mean limitationsโ€”it means understanding where you are so you can take the best next step forward. Sometimes that means resting. Sometimes it means speaking up. Sometimes it means doing the thing youโ€™ve been putting off.

๐Ÿ’ก Being honest can actually open more doors than it closes.

๐Ÿ’ฌ Letโ€™s hear from you:
Whatโ€™s one thing youโ€™ve learned to be more honest about when it comes to your health?

1 hour ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐ŸŒธ VMCOTWW: Spring Has Sprung โ€“ Coming Tomorrow! ๐ŸŒฟ

Itโ€™s almost time for Visit My Corner of the World Wednesday, and this week weโ€™re leaning into all things spring. ๐ŸŒผ

So hereโ€™s your little heads-upโ€ฆ

๐Ÿ“ธ Start thinking about what you might want to share tomorrow!

It could be:
๐ŸŒณ Your favorite park or walking spot
๐ŸŒท Flowers starting to bloom nearby
๐Ÿฆ Birds or wildlife youโ€™ve been spotting
๐ŸŒ… A peaceful view from your porch or window
๐Ÿš— Or even a drive-by view that always makes you smile this time of year

No pressure, no perfect photos neededโ€”just a little piece of your world.

๐Ÿ’ฌ Tomorrow, weโ€™ll be sharing all things โ€œSpring has sprung,โ€ and weโ€™d love to see what that looks like where you are.

So keep your camera (or phone) closeโ€ฆ you never know when that perfect moment might pop up. ๐Ÿ˜‰

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐Ÿ’ฌ Letโ€™s Talk: How do you recognize when your COPD is changing?

Sometimes the earliest signs arenโ€™t always obviousโ€”and thatโ€™s where this community really shines. The little things youโ€™ve learned to notice over time might be exactly what helps someone else connect the dots sooner.

Weโ€™d really love to hear from youโ€”whether youโ€™ve been here a while or youโ€™re just getting started. Every perspective matters.

๐Ÿ‘‰ Whatโ€™s the first thing that makes you pause and think, โ€œsomethingโ€™s not quite rightโ€?
๐Ÿ‘‰ Are there symptoms that tend to show up for you when things are worsening? (breathing changes, more mucus, fatigue, etc.)
๐Ÿ‘‰ When you talk to your doctor, how do you describe what youโ€™re feeling?

If youโ€™re newer here, this is a great way to jump inโ€”no pressure, just share what youโ€™ve noticed or even what youโ€™re still figuring out.

โฌ‡ Add your thoughts in the link to our Q&A below so others can learn from your experience and come back to it when they need it.

You never knowโ€ฆ your comment might be the one that helps someone else take that next important step.

https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/How-do-you-know-your-COPD-is-getting-worse.aspx

How do you know your COPD is getting worse?

What symptoms worry you the most when this happens (for example, trouble breathing, more mucus, coughing, chest feeling tight, etc.)? How do you tell …

2 days ago

Tara Shedor, COPDF Communications

Tara Shedor, COPDF Communicationsasked the question: โ€‹What do you know about new COPD treatments?

Take our survey! We want to hear from you if: - you are over 18 years of age - have been diagnosed with COPD - are currently using any inhaled therapy The survey only takes about 5 minutes to complete. Take the anonymous survey: …

8 minutes ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

๐ŸฝRADISH SALAD๐Ÿฝ2 cups sliced radishes1/2 tsp. salt1 cup sliced red onion 1 cup seeded and sliced cucumber 1/2 cup olive oil2 tbsp. white wine vinegar 1 tsp. chopped fresh dill 1 clove garlic, minced 1/2 tsp. sugarIn a medium bowl,...

2 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Thursday, friends! Let's get that pep, vim, and vigor going! A can-do attitude guides us through the day, helping us to accomplish many tasks. 
Sending multitudes of positive vibes to everyone, here on 360Social! ๐Ÿช„ โœจ๏ธ 

6 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Is there a list of online pulmonary rehab clinics ?

Morlan Health has a virtual pulmonary rehabilitation program that serves an expanding area and is covered by many insurers and Medicare.
Damian Solorzano Aaron Stillwellstefb1and 2 others also answered the question Damian Solorzano and 4 others also answered the question

8 hours ago

eric63

eric63answered the question Has anyone used Wixela for COPD and if so, was it useful in relieving any symptoms?

I have COPD and have used both Advair and its generic replacement Wixela. Both work the same and they do help with relieving COPD symptoms.
TJ69Smokey100Ken Benson-California Lung Health Advocate and State Captainand 1 other also answered the question TJ69and 3 others also answered the question

17 hours ago

Bob puff dragon

Bob puff dragonHappy hump day.

22 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

I wonder if the marinade could be used as a sauce and the chicken cooked in it in a crockpot?...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

GRILLED CHICKEN WITH โ˜•๏ธCOFFEEโ˜•๏ธMARINADE"Great for the upcoming holidays..."Marinade:1/2 cup olive oil 1/2 cup balsamic vinegar 1/4 cup lower sodium soy sauce 1/2 cup brewed strong coffee1/4 cup Worcestershire sauce 1/8 cup lemon juice3/4 cup packed...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy wonderful Wednesday! It doesnโ€™t matter what the weather is like outside. It can always be a sunny and bright day in your world. It's all in your mindset. Focusing on the good things makes each day a better day! 
Keep those positive vibes flowing! Youโ€™ll find that wearing a smile matches anything you decide to wear! Plus, a smile is one-size-fits-all!! ๐Ÿ˜ƒ

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question How do you know your COPD is getting worse?

A drop in saturation rates as measured by oximeter, difficulty maintaining saturation above 90% at rest (normally Iโ€™m up to 95%), discolored mucus (normally I have none or itโ€™s clear/white) are my normal signs of a flare up. Sometimes I can take it easy, …
TJ69eric63Richard DJand 5 others also answered the question TJ69and 7 others also answered the question

1 day ago

Kintsugi๐ŸŒฟ

Kintsugi๐ŸŒฟ

Hello to each of you๐ŸŒฟ๐Ÿ˜Š
I humbly thank each of you for your lovely  "Welcome!"
I have an appointment with an actual Pulmonologist in a few weeks! 
My brain is wired differently than most people ๐ŸงŸโ€โ™€๏ธ๐Ÿ˜‰ I am often talked at by health professionals. I need to process every word I am told, for me, there is constant input to process. Questions as to what to do, is there any help I can benefit from. Any programs? Any tools I can have that will help me to improve my breathing? Do not come to my immediately. You are my Resource ๐ŸŒฟ Thank You! ๐Ÿ˜Š

1 day ago

Bob puff dragon

Bob puff dragonToday is going to be a great day can just feel it....

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

๐ŸฅฃSPRING VEGGIE RICE๐Ÿฅฃ1 cup basmati OR jasmine rice2 cups water1/2 tsp. salt, divided 2 tbsp. olive oil 1 bunch asparagus, trimmed and chopped1 cup frozen peasLarge handful cilantro, chopped Juice of 1 lemonJuice of 1 limeAdd the rice to a...

2 days ago

GroovyLit

GroovyLit

I was first diagnosed with COPD in 2011. At that time, it was moderately severe. As expected, it did progress. In 2014 I stopped working after a year of precipitous decline -- only to improve to such an extent that I returned to work in 2016. In 2022, I stopped working again due to both my own health, and my elderly parents (my father died the same year). In 2024 I contracted Covid for the first (and then second) time and by the end of the year had been hospitalized overnight for acute respiratory failure. 


In 2025 I was diagnosed with non-allergic rhinitis, non-type 2 asthma, and common variable immunodeficiency. Last fall I was diagnosed with end stage COPD. 


Last May, I finally accepted I would be unable to go back to work in any capacity and applied for Social Security Disability. A couple of weeks ago I finally received a couple of packets of forms for both me and my husband to fill out and return, which we did. Last week I received another form -- the website says we should expect more forms for my husband to fill out.


I spoke to my Claims representative. At this point, she is gathering information to forward my application for medical review. That review will only take place once someone has been assigned to review it -- a process likely to take at least the nearly year it took for my representative to actually be assigned and review my application and supporting medical records (which I had provided proactively with my application). One a medical reviewer is assigned the website says the average time for it to complete is 328 days. My representative confirmed there will be yet another review by someone else before an initial decision is even made. 


Has anyone else applied for Social Security Disability due to severe or (like me) very severe COPD? What was your wait time like?

2 days ago

  • NewestOldestClick to View All Comments9 comment(s)
  • GroovyLitSomething I want to add, it isn't only that massive SSA and Medicaid funding shortfalls over the decades have resulted in across the board layoffs -- in deep red states like mine, SSA workers are paid far less than they are in other states, and open requisitions that do exist go unfilled. Then, once a decision is finally made, it is usually a denial, resulting in an appeal and hearing. I am married and my husband still works so that we can afford health insurance. If I were single I would be flat broke, my savings completely depleted, with nowhere to live, no way to move, no health insurance, no food... and would almost certainly be dead before my claim could be fully adjudicated. Add to that decades of failure to modernize the systems used by our bureaucracies and you end up with a nearly complete failure of a system I, personally, have been paying in to throughout 45 years of employment. I think so-called entitlement programs like Social Security, Medicare and Medicaid will not only continue to see priority focus in coming elections; I think actual action will be taken to strengthen those systems. Well, either that, or the government will simply keep the existing funds and end all three programs at once (worst case scenario... not that we haven't seen an awful lot of those lately).22 hours ago
  • David Mannino, MD (Chief Medical Officer, COPD Foundation )Criteria for SSI with COPD depend on the degree of lung function impairment (generally needs to be FEV1 less than 50% - but varies a bot by height, etc)13 hours ago
  • GroovyLitMy FEV1 was 25% at its best, last year. The year started at 21%. The last test was at elevation in Denver (I live in Austin) in August. My best there was 23%. I am 5' tall.
    8 hours ago
Clairaw

Clairaw

Hi ime new here.  My mum was diagnosed with copd dec 2010.  The last few months she is blacking out with 3 falls easter weekend with a 2 week stay in hospital.  She has brittle bone as well because of the meds over the years, so its taking her longer to recover from bruising at 83 its hadd enough.   She is on 2lt of oxygen round the clock.  Over the weekend my daughter came to stay so i could have a short break and her oxygen dropped to 83 and then spiked and carried in like that.   Last night i rang for an ambulance as her gp refused us palative care or acp.  I took her yesterday to see gp as shes very lathargic, forgetful, confused and eghasted.  I explained about the spikes and drops in her oxygen and he asked i ring lung health this morning.   Lung health wants me to put her oxygen back upto 2lt and leave her over saturated till 21st may.  Her oxygen went straight upto 98.  I dont know what to do as i am scared of loosing her 

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy terrific Tuesday, everyone! 
Wishing all of you the best day ever! Lots of reasons to smile! Plenty of things to look forward to! ๐Ÿ˜ƒ

2 days ago

David Mannino, MD (Chief Medical Officer, COPD Foundation )

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question Flow volume loop

FET is the forced exhalation time. Yours stopped after 4.5 seconds and probably should have gone on for 6-8. The curve is a bit caved in relative to what it should be (shaded part). So this is consistent with mild obstruction.

2 days ago

Kmcnamara68

Kmcnamara68asked the question: Flow volume loop

Here is that flow volume loop Dr. Mannino, I have attached a pic of the flow volume loop from the rent pft here. How can one tell what the exhalation time was on a pft? Thank you

2 days ago

David Mannino, MD (Chief Medical Officer, COPD Foundation )

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question Most recent PFT not ruling out copd

Interpretation does not quite work that way... You did have a 4.5 second exhalation on this one ( which is shorter that the usual 6-8 seconds we like). The flow volume loops would be helpful to see if the loops looked obstructed or not,

2 days ago

TJ69

TJ69answered the question Shortness of breath does not improve after inhaling of albuterol what is the reason

One thing for sure, it is not likely due to one thing. I am currently investigting myself regarding this problem wiwth Albuterol as well as with the Maintainance Med generic Advair...which, whenit works is wonderful...but for some reason it was just …
GAnneDiane Z.Cammie31and 5 others also answered the question GAnneand 7 others also answered the question

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

A nice treat to serve to your friends when they stop by to visit! With all the different fruit to choose from, there's something for everyone! ๐Ÿ™‚...

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

๐Ÿ”ถ๏ธ"COULDN'T BE EASIER!"๐Ÿ”ถ๏ธ16 graham crackers3/4 cup cream cheese, slightly softened 3 tbsp. powdered sugar Fruit: Berries, pear slices, peach slices, drained Mandarin orange segments...Lots of choices to make. Be creative!In a medium bowl,...

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Motivational Monday!
Keep those positive thoughts flowing, and keep moving forward! ๐Ÿคฉ

3 days ago

Catch22

Catch22answered the question Age 33 Diagnosed with COPD

Hello, Lately I have COPD (71) yo, and I have been noticing the importance of sleep. I cannot emphasize it enough. It is becoming apparent to me that some of my worst exacerbations come when I have not had enough sleep for a few nights in a row. So …
Liza MDavid Mannino, MD (Chief Medical Officer, COPD Foundation )DebbieB.-Connecticut State Captainand 6 others also answered the question Liza Mand 8 others also answered the question

3 days ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.