COPD360social welcomes new member Tgodiva who joins 65,714 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐Ÿค Tell the Truth Day: What's One Truth You'd Like Someone to Understand?

Today is Tell the Truth Day, and I thought it would be a good reminder that sometimes the bravest thing we can say is the truth.

Maybe your truth is...

๐Ÿ’™ "I'm more tired than people realize."
๐Ÿ’™ "I miss doing the things I used to do."
๐Ÿ’™ "I'm afraid of becoming more short of breath."
๐Ÿ’™ "I wish people understood that some days are simply harder than others."
๐Ÿ’™ "I don't always ask for help when I probably should."

Living with COPD, bronchiectasis, or NTM can sometimes make us feel like we have to put on a brave face. But being honest with your family, your friends, your care teamโ€”and even with yourselfโ€”isn't giving up. It's how people know how to support you.

The truth also helps your healthcare team make better decisions. If you're having more symptoms, struggling with treatments, or finding everyday tasks harder than they used to be, don't be afraid to say so. Your voice matters.

So, if you're comfortable sharing...

๐Ÿ’ฌ What's one truth you'd like others to understand about living with COPD, bronchiectasis, NTM, or being a caregiver?

You never knowโ€”your honesty might be exactly what someone else needs to hear today. โค

5 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question Why do my symptoms return after stop using prednisone

Jalee, you didn't mention that you were on an antibiotic - is it possible that you have an infection? You may want to see if you can get an earlier appointment. Please let us know how you're doing.
Phyliss DiLorenzo NJ State CaptainJaleePat from Illinoisand 3 others also answered the question Phyliss DiLorenzo NJ State Captainand 5 others also answered the question

30 minutes ago

Tgodiva

Tgodiva

Getting over being sick and it is taking a long time๐Ÿ˜‘

2 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainMy thought for today is:
We are all so very lucky to have each other here on this website. ๐Ÿ˜‡

2 hours ago

DebbieB.-Connecticut State Captain

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

This is a nice, healthy side dish. Or, makes a nice, light lunch! Recipes are meant to be customized to your own liking. Karen, I hope you enjoy this without the garlic! ๐Ÿ˜€...

5 hours ago

Karen Deitemeyer - Florida State Captain

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

Yummy except I would leave out the garlic....

6 hours ago

DebbieB.-Connecticut State Captain

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

๐ŸŸกSAUTร‰ED CORN, ZUCCHINI, AND TOMATOES๐ŸŸข1 tap. olive oil 2 cups diced zucchini, in 3/4-inch dice3 medium ears corn, cooked and kernels removed 1 cup cherry tomatoes 1 garlic clove, minced 1 tbsp. minced cilantro 1 tsp. lime juice 1/8 tsp. salt 1/8...

6 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Tuesday, friends! 
Wishing you a warm welcome and a sunshiney smile on this lovely day! We are so happy to have you here with us! ๐Ÿ˜€๐ŸŒž๐Ÿ˜Š

11 hours ago

JeanO53

JeanO53This Indigo Bunting is looking forward to singing... ๐ŸŽถGood Morning ๐ŸŽถ to all at 360Social

14 hours ago

Margaret l

Margaret l

My mother has COPD. Sheโ€™s nauseous all the time.

21 hours ago

Melissa kelley

Melissa kelley

I am doing ok but scared about mild emphysema getting worse , as I was diagnosed with it two weeks ago

22 hours ago

Blowe

Blowe

Good morning everyone. Hope you all have a great day. 

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community ManagerGood morning, everyone! โ˜€

I hope you had a chance to enjoy at least a little bit of the holiday weekend, whether that meant spending time with family, relaxing with a favorite pet, watching fireworks from a safe distance, or simply enjoying a quiet moment at home.

Now it's Monday... and we've got a brand-new week ahead.

If your breathing feels great today, celebrate that. If it's one of those mornings where everything seems to take a little more effort, that's okay too. Every day doesn't have to look the same.

As we settle into July, remember that summer can still surprise us. Even when temperatures are a little kinder, humidity, poor air quality, and overdoing it can sneak up on us.

๐Ÿ’™ A few gentle reminders:
๐ŸŒค๏ธ Check the weather and air quality before heading out.
๐Ÿ’ง Keep water nearby and stay hydrated.
๐Ÿ’Š Take your medications as prescribed and don't wait until you're struggling.
๐Ÿ˜Œ Pace yourself. There's no prize for doing everything in one day.

Most importantly... be kind to yourself this week.

Whether you're living with COPD, bronchiectasis, NTM lung disease, caring for someone you love, or simply cheering others on, know that you're an important part of this community.

I'm glad you're here, and I'm looking forward to sharing another week with you.

๐Ÿ’ฌ What's one thing you're looking forward to this week? Big or smallโ€”I would love to hear it.

๐Ÿ’™ If today feels like a fresh start, wonderful. If it feels like you're picking up where you left off, that's okay too. Either way, I'll be here, cheering you on, one breath and one day at a time.

1 day ago

Ken Benson-California Lung Health Advocate and State Captain

Ken Benson-California Lung Health Advocate and State Captain

Monday Morning Music
The 59th Street Bridge Song (Feelin' Groovy)
Simon and Garfukel
https://www.youtube.com/watch?v=-xhJcQEfD5s

1 day ago

DebbieB.-Connecticut State Captain

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

๐ŸฅฃKALE AND QUINOA SOUP๐Ÿฅฃ2 cups diced onion1 1/2 cups diced carrots 1 cup diced celery with leaves2 tbsp. olive oil 2 cups diced zucchini1 large red bell pepper, diced3 cloves garlic, minced7 cups vegetable brothOne 28-ounce can crushed...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Monday! You can bank on the fact that 360Social is a wise, smart way to spend your time! Keep on smiling friends! ๐Ÿ˜€

1 day ago

Caroline West Virginia State Captain

Caroline West Virginia State Captain

Praise God from whom all blessings flow.  I was able to sustain my oxygen saturation as I made coffee and returned to my seat at my breakfast bar.  No supplemental oxygen needed.  I will put my oxygen on to sleep, but please do not ever give up and do the things that we say will help which is to eat well, exercise, get enough rest and keep a positive mental attitude.

1 day ago

Oxygen tank Man

Oxygen tank Man Only short 5k this Sunday surport by lovely wife Marie. Beach race on the Yorkshire coast

1 day ago

Oxygen tank Man

Oxygen tank Man

Over 4800ft climbing 17 hours change 5 oxygen tanks. 

1 day ago

Oxygen tank Man

Oxygen tank Man Did my first ultra marathon last Saturday 47 miles. First man in the world to carry oxygen tank in ultra marathon and the oldest. Waiting for Guinness book of records to comfirm the record. 

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Hello, friends! 
This morning I rescued a pretty little zebra finch! 
(IFKYK) People know me, and they call me about animals. So, I got a call. A person had a 6 month old zebra finch. They had the finch for 3 months, and decided they didn't want to take care of her anymore. 
Went and picked her up. The rest is history. She had no name, so I named her Rhoda Zimmerman. No pictures yet. Don't want to scare her.

1 day ago

COPD239now

COPD239nowanswered the question Check-in: How Summer Heat and Humidity Can Affect COPD

I use a hand held fan, not just in the hot weather it also really helps when your struggling to breathe. It really does work extremely well.
Jamie Jarrard (COPDF Sr. Communications Specialist)HIcopd - Hawaii State CaptainAurieland 5 others also answered the question Jamie Jarrard (COPDF Sr. Communications Specialist)and 7 others also answered the question

2 days ago

Totally Terri

Totally Terri

Spent yesterday at urgent care AGAIN. Already had two rounds of steroids and antibiotics in less than a month so the doctor wouldnโ€™t prescribe more. Just coughing up crud. Literally made an entire Walmart order of facial tissue so I can have it everywhere. Donโ€™t see my pcp until the 9th. Sheโ€™s only in the office twice a week. Anyway exhausted after the neighbors did big illegal fireworks until 1 AM. No respect for the sick, the elderly, the very young, or pets. Ugh. 

2 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Caroline West Virginia State CaptainI hope that you find answers and feel better soon.1 day ago
  • Karen Deitemeyer - Florida State CaptainIโ€™m sorry youโ€™re having such a rough time right now.  Do you have a pulmonologist?   If not, please make an appointment with one as soon as possible.  They are the specialists and best able to get you on a good regimen of meds that will hopefully keep you out of urgent care in the future. 1 day ago
  • Karen Deitemeyer - Florida State CaptainTotally Terriโ€‹ - PS to my comment above - I have just seen your earlier post in which you said you do have a pulmonologist (or did have).  In that post you said you had been recommended to go to Cedars or UCLA - Apparently your doctors feel that your medical condition merits review by a much more specialized team than they are able to provide you with.  Do you live anywhere close to thise centers?  If it's at all possible, I think that's your best course of action.  And I hope you start to feel better soon. 1 day ago
Wildebeest

Wildebeestanswered the question Does anyone have constant Air hunger/sighing dyspnea

You might have a breathing pattern disorder. That can be inmproved. I would suggest maybe seeing a respiratory physiotherapist before writing this off as anxiety, which I find is a very useful catch all for medics when they don't really have a clue. I …
Mike99Young98 also answered the question Mike99and 1 other also answered the question

2 days ago

sammie49

sammie49

Ok so, in 2015 age 38 I had full lung function test and was told my lungs at the time were 68. I'm now 49 and have just had full lung test and been told my lungs are 79 and I have copd. Is it possible to determine rough prognosis from this as thats all they have told me until my next appointment in a weeks time

2 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • DebbieB.-Connecticut State CaptainWhen I had hand held spirometry tests, I remember the results would give a "lung age". The best thng to do is to wait and see your pulmonologist. You will discuss the test results, and it will be determined which medications you will need, if necessary. Best of luck to you!2 days ago
  • sammie49Thankyou Debbie xx2 days ago
  • DebbieB.-Connecticut State CaptainYou are quite welcome, sammie49! ๐Ÿ˜Š1 day ago
DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Sunday, everyone! Wishing all of our friends a lovely day! 
May you find many of life's simple pleasures! ๐Ÿ˜Š

2 days ago

Totally Terri

Totally Terri

My pulmonologist finally admitted he had no idea how to help me THEN PROMPTLY DROPPED ME after years of my being his patient and two weeks ago tons of blood, urine, and even biofire sputum came back negative.  Heโ€™s talking about a lung biopsy. I am on blood thinner and have a history of PEs so Joe Blow doctor at everyday hospital is NOT doing that to me.   I vaped nicotine for four months in 2014 until I got phlebitis. In the 80s, I hung out w the cool kids which you guessed it smoked!!  Even though I didnโ€™t. I have been in and out of urgent care and ER repeatedly.  I have been told to go to Cedars or UCLA. I was told today in urgent care after xrays I am full of โ€œold damageโ€. That my lungs have been โ€œshredded to fluffโ€. Even though I am running a fever, the doctor didnโ€™t put me on a third round of steroids and antibiotics this month. He checked to make sure I had no clots and had not had a heart attack. I didnโ€™t and hadnโ€™t. Anyway my pulmonologist turned my file back over to my medical group w every code for lungs ever. COPD ASTHMA OVERLAP AND EMPHYSEMA being the big ones.  I am on Stiolto at night. Air Supra for emergencies. And Levabuterol three times a day for now.   I am very scared. I am on 2 liters of oxygen 24/7.  Have been since being hospitalized w pneumonia in January. Had bronchitis in October.  I got prior authorization to get RSV vaccinated. I am 55. Scared to do it.  Know itโ€™s a dead virus. Just scared. My rheumatologist said to do it. Heโ€™s had people hospitalized in intensive care w RSV. I am obese. I am hoping I qualify for the 18 months of $50 a month GLP1s. I gave up my CPAP. I barely qualified for it and the struggling to exhale no matter how I adjusted it made me feel like I was going to die. I was told perhaps a bipap would be appropriate in the future. 

2 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Does anyone else get leg cramps from their meds?

I had a patient who swore by a dab of dry powdered Colemanโ€™s mustard on the tongue instantly relieved her leg cramps when swimming. She kept it in waterproof container on side of pool when swimming.
GAnneKim HDebbieB.-Connecticut State Captainand 5 others also answered the question GAnneand 7 others also answered the question

2 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.