ChristinaH

ChristinaHSharing helpful information on coping with your bronchiectasis and/or NTM diagnosis can be very helpful to others. This month's "Share Your Story" series question is on the topic of mental health. Click on the link below to share your best tips or advice on what you do to maintain a positive attitude and improve your mood.

https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers/Share-Your-Story-Mental-Health


2 days ago

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  • laff4evr
    Real stuff which brings me joy:  reminiscing, music, sunshine, fun, accomplishments, thinking, vacations, learning history, some TV shows,
    the color green, communing with the Creator, and a lot more stuff.1 day ago
  • Ksmiles123Christina,
    This is such an important topic for members to share experiences.   Many of us grew up being directed to accept the deck that you have been given and move on....It is not that easy when dealing with a new onset of a chronic condition which few fully understand.  
    A few tips for members:  
    Talk or write your worries out, this helps bring problems into perspective.
    Walk it out if you are able to do so- this lessens stress and improves well being.
    Time management- set priorities on what is most important to be done on any given day.
    Pace yourself- Do not continue to push yourself when you are unable to do so.
    Learn to say "no" to some requests.
    Avoid negative people and situations.
    Keep a gratitude list .
    1 day ago
  • ChristinaHlaff4evr​ you crack me up! 


    All great suggestions you all! I am definitely a fan of music for relaxation or a great book. Right now I am reading American Dirt and it's so good! I also use walks to clear my head and destress although it's  chilling down a bit in Virginia in the mornings.  1 day ago
Storyteller

Storyteller

Does anyone have any recommendations for a good pulmonologist in Atlanta, Ga ? We may be moving.

5 hours ago

Ksmiles123

Ksmiles123Hello! Self care assists us in dealing with stressors in our lives. Below are some quotes on practicing good self care. What type of self care do you practice while under stress?https://www.positivityblog.com/self-care-quotes/


8 hours ago

ChristinaH

ChristinaHcommented onThe Prevalence and Significance of Staphylococcus aureus in Patients with Non–Cystic Fibrosis Bronchiectasis – A Bronchiectasis and NTM Research Registry Study

 You're welcome Katie! Interpreting these studies into lay manuscripts are a challenge but I am learning so much every time I write one! I think it's important for our community to know how the BRR is being used to support research efforts. :)...

1 day ago

Ksmiles123

Ksmiles123commented onThe Prevalence and Significance of Staphylococcus aureus in Patients with Non–Cystic Fibrosis Bronchiectasis – A Bronchiectasis and NTM Research Registry Study

 Thank you for sharing this interesting update. It seems that Pseudomonas is the most worrisome bacteria in the group....

1 day ago

ChristinaH

ChristinaHadded a new article The Prevalence and Significance of Staphylococcus aureus in Patients with Non–Cystic Fibrosis Bronchiectasis – A Bronchiectasis and NTM Research Registry Study

This blog post was written by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education.

Non-cystic fibrosis (CF) bronchiectasis is a lung disease characterized by permanent widening of the airways. Patients with bronchiectasis are often burdened by frequent exacerbations (also known as...

1 day ago

Ksmiles123

Ksmiles123Hello! An important conversation to begin ahead of the holidays, in attempt to lower stress throughout the holidays:https://www.healthline.com/health-news/are-you-vaccinated-how-to-ask-others-before-holiday-gatherings?slot_pos=article_3&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=generalhealth&utm_content=2021-10-18&apid=25246343&rvid=94a84db5178149857828ced51c5f2056ff605e1649ff4cd9cb2111133e73b49f#The-importance-of-asking-in-advance

2 days ago

ChristinaH

ChristinaHasked the question: Share Your Story - Mental Health

Maintaining a positive attitude when you have bronchiectasis and NTM can be challenging. What types of activities bring you joy or improve your mood?

2 days ago

Ksmiles123

Ksmiles123answered the question Share Your Story - Airway Clearance

Carolyn, Hello! Welcome to the site. We are here to support you on the journey. Let us know how it goes with the ID doc on Wednesday. Kati
CarolynnKandyedaoand 4 others also answered the question Carolynnand 6 others also answered the question

3 days ago

Ksmiles123

Ksmiles123Hello! https://www.bronchiectasisandntminitiative.org/Learn-More/Learn-More/Travel

4 days ago

CAB

CAB

Going to be starting on the 3 antibiotics for NTM and have Bronchiectasis as well.  Wondering what lifestyle changes have helped others out there.  

5 days ago

Ksmiles123

Ksmiles123

Creating the optimal sleep environment is essential for both mental and physical health. The article below reviews a few good tips: https://www.mindbodygreen.com/articles/frank-lipman-sleep-tips

5 days ago

Ksmiles123

Ksmiles123

Hello! Are you under 65 and experiencing difficulty getting the high dose flu vaccination? I had not experienced this issue in the past decade. Neither cvs or Rite Aid will administer it to me. Awaiting to hear back from the insurance company.

6 days ago

Ksmiles123

Ksmiles123commented onExperiences of Bronchiectasis/Nontuberculosis Mycobacteria (NTM) Patients during the COVID-19 Pandemic: Call for Survey Participants

 It has truly been a challenging Covid Year. Looking forward to reading the results of these surveys. ...

1 week ago

JohnT

JohnTanswered the question What would you do: choose clofazamine or quality of life?

Hello Patikirk, I have taken Clofazimine for two separate NTM infections. Each of these times lasted a year. I was also multi drug resistant. The doctors told me horror stories about Clofazimine and made me sign all kinds of papers stating that I knew …
Ksmiles123 also answered the question Ksmiles123 also answered the question

1 week ago

Maggie O

Maggie O

Hi all, here are some of the books that help me stay sane, especially when I have a flare-up. Poetry has recently touched me, especially poetry by Mary Oliver. Just the thought of the wonder of nature makes me smile, and fills me with hope that I will get better. Right now I trying to get more into meditation, and reading the book, Comfortable with Uncertainty by Pema Chödrön. When I have a flare-up and not feeling well, I turn on guided meditation on my phone, and follow along. That calms me and make me feel better, mentally. Another book that has touched me, is When Breath Becomes Air
by Paul


Kalanithi. That book is both dark and positive. His thoughts of, "I can't go on, I must go on" often rings in my ears as I feel pretty hopeless. And I do go on!

A question to Ksmiles123​: you mentioned earlier about your strict infection prevention. What do you do now that you didn't do before? When I was a preschool teacher, and was in close contact with children daily. Then covid hit, and I see almost no one close up. Still my illness has become worse! What could I do more to prevent flare-ups?

I so appreciate all your stories and advice!

1 week ago

  • NewestOldest
  • Ksmiles123Maggie O,
    Thank you so much for sharing your experiences.   It is so important to feel that we are not alone on the journey.
    Re: infection control,  I did not carry paper towels, tissues to use on elevators,open doors, to doctors offices, turn off and on the faucet, etc.  I will wear a mask going forward whenever in a MD office.  I am just so much aware of how we can prevent transmission of germs than I was years ago.   Eating more fruits and vegetable , increasing Vit D levels is key.  I continue to work on better sleeping habits.  I avoid crowds, anyplace where you will be in close contact with a potential infection.  Learn to say "no" to family events where even one person is not feeling well- learn to communicate your concerns before the event not at the event when it is too late. Handwashing is also so important.  It takes awhile to really apply everything one reads into their daily practice.   This illness varies so much amongst patients.  I am so sorry to read that you are feeling worse.   I hope that your current therapies improve your condition over time.  1 week ago
  • Maggie OKsmiles123​, thanks so much for your response! I am doing all the things that you do, and have done for years. As a former preschool teacher, I am used to washing my hands frequently, etc. I am hoping, though, that after getting my third booster covid shot, that I will be able to see my family for Christmas. Hoping that my granddaughter will also get her first shot at least before then. For now, I am not seeing them inside the house as Covid still is very prevalent here in TN. I will try to stay positive despite nevertheless. Thanks again!6 days ago
  • Ksmiles123Maggie O,
    You are most welcome! Yes, some of the preventative measures work for many patients, some do not. Ongoing research is being done on our baseline immune systems, etc. 
    in the interim, we are here to support you. I will be posting different articles, information on preserving our mental health through these challenging times. You are not alone. I sincerely hope that your holiday wishes come true. 😄 Katie6 days ago
ChristinaH

ChristinaHadded a new article Experiences of Bronchiectasis/Nontuberculosis Mycobacteria (NTM) Patients during the COVID-19 Pandemic: Call for Survey Participants

This blog post was written by Arielle G. Hernandez, MPH, PhD

The COVID-19 pandemic has changed the world, transforming our lives in numerous ways with lasting impact. While the fight against COVID-19 is not yet won, there is at least a light at the end of the tunnel with reopenings occurring across the United States and in other countries. We are coming out of over a year in which we had to avoid gatherings, adhere to social distancing rules, and even now, we wear masks to keep...

1 week ago

Ksmiles123

Ksmiles123Stressors are a part of life, good and bad stressors.  Talking with others, journaling, walking are a few ways I cope with stress. How do you cope with stress these days?
Www.Cdc.gov/mental health/stress-coping/cope-with-stress/index.html







1 week ago

Ksmiles123

Ksmiles123

How are you sleeping these days? Sleep is so important for our mental health. The link below reviews causes of insomnia: https://www.webmd.com/sleep-disorders/ss/slideshow-insomnia-medical-causes

1 week ago

Ksmiles123

Ksmiles123

As we continue to focus on mental health issues throughout the month of October - I found this interesting article below.Languishing is the opposite of flourishing. The article below reviews the common indicators that you are languishing. https://www.mindbodygreen.com/articles/languishing

1 week 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. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.



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