Karen Martin

Hi Karen and Bob @casey @oxygenman, Thanks for sharing your thoughts.

Yes, Karen you have a great perspective that I agree with wholeheartedly! The world is better when we can support each other–give help to others when they need it and gratefully accept it ourselves when it’s our turn. We are all just a big human tribe after all. Connection is…[Read more]

Happy to connect with you about this Karen @casey. It’s a very invasive surgery that has lasting implications on your health (good and bad ones) so I would honestly be more concerned if you weren’t having yo-yo feelings about it. It’s a really big decision with a lot of uncertainty. But, as you said, none of us is alone in this journey. 🙂 If…[Read more]

@casey Karen, ditto what Dennis said, and your friend does make a great point, haha! Not to minimize the whole transplant experience into a simple “yes/no” discussion. It’s a huge life choice, should you be eligible. I know people who have been listed without really wanting to be, and have struggled to accept the consequences. I also know people…[Read more]

I am also truly sorry to hear of your experience @casey! The assumptions people make about 02 can be truly astounding. And yes, a really powerful exercise to help others realize how difficult it is to breathe with fibrotic lungs is called the “Straw Challenge”. Participants put a nose clip on and walk 100 meters as briskly as they can with a…[Read more]

@casey Karen, I can’t believe they said that! Don’t they realize people depend on oxygen to like, I don’t know, breathe!? Unacceptable. I would definitely call back and ask for a supervisor. And while you’re at it you can share with them an exercise that @charlene-marshall taught to a bunch of researchers to see what it feels like to have IPF.…[Read more]

@casey

Thanks for writing, it is nice to hear from you 🙂

I completely agree that everyone has ‘something’ they’re dealing with that we may not be aware of, including the things you listed. In addition to their response often being “I’m fine, thanks” as a cover-up, I think our society is really good at also glorifying busy to cover up the…[Read more]

Hi @casey,

So interesting you mentioned this Karen, as I just had this same conversation with my Mom. We think part of it (in addition to drug side effects maybe) is the foaming hand soap I was using. While effective, I think it was too rough on my hands and I’ve made the switch to a gentle non-foaming hand soap in the bathroom upstairs and an…[Read more]

@casey Karen, I totally get that. I can see how it could make you feel like something is wrong with you or that you are doing something wrong. Both of those feelings are hard to handle when you already are struggling! But I do agree that doing sort of real-life things that exercise your body and lungs is good. And practicing things like a…[Read more]

@casey Karen, I could definitely see that causing anxiety. My mom struggled with that too, and when I was trying to do breathing exercises with her she would get frustrated (self-conscious, perhaps, but definitely scared about her waning ability). I think the exercises that distract your mind a bit while also working your lungs are really great.…[Read more]

@casey

Hi Karen,

Thank you so much for sharing your thoughts and these resources with me re: the dizziness and stiff neck/shoulders. I’m happy to report the dizziness is much improved this week, but I do still have some issues with my neck. Unfortunately, I think the culprit is what you suggest: “tech neck” and stress. I’ve been more mindful the…[Read more]

@casey

So well said, you’re absolutely right! This is 100% what I believe too, though I admit: I’m guilty of falling into the stress/worry scenarios, but those ultimately are not what it is important. I hope to be more intentional in where I choose to place my (already limited) energy in the new year, and focus just on the ‘here and now’. It’s…[Read more]

Our pleasure @casey , truly! 🙂
I submitted a column on this topic for my publication date of tomorrow. I’ll try to remember to send you the direct URL, but it will be posted on our PF News homepage as of tomorrow (Thurs) morning! Glad you’re finding the forum helpful, thanks for being part of this special community.

Char.

You’re most welcome Karen ( @casey ) … glad you found it helpful! This is always something worth reviewing! Actually, I think I might write a column on it with the tips that I find helpful in proactively preparing for an emergency. I’ve learnt along the way, and sharing information is really important 🙂 Stay tuned!
Char.

@casey

Hi Karen,

So sorry you endured a power outage! I know how anxiety-provoking that is when you rely on oxygen 24/7 and are at risk of it running out due to a shortage. Do you also have tanks stored at your house for this? While I usually use my home concentrator or POC, I always try to keep some full E tanks at home just in case of a power…[Read more]

@casey

Hi Karen,

Thank you so much for writing and sharing this with us. The Governor’s response was brilliant, I agree. Unfortunately, many of the people creating the controversy around wearing a mask are likely (this is an assumption) those who have not been touched by the virus personally, and I hope they aren’t. However, that might be what…[Read more]

@casey

I am glad this information is helpful my friend! I hope you’re keeping as well as possible. Think of you often!
Charlene 🙂

@casey

Hi Karen,

Thank you so much for your kind words, they really mean a lot to me! I knew some members of the online PF community that I am so privileged to be a part of, would indeed be stunned or upset by the news of my sharing my COVID+ result. I was a little reluctant to do so as a result, but I thought it was important to show that you…[Read more]

Really interesting conversations about how often folks change and/or clean their nasal cannulas. Thank you for contributing to the discussion @patriciadubose @casey @burma and @cactus run. I was always afraid cleaning my cannula with vinegar would overwhelm me with its incredibly strong smell, but it sounds like if you follow up with soap, the…[Read more]

@casey

Thank you for sharing the tonic water tip again Karen! I had heard of this prior, as being something that helps with restless leg syndrome, although I completely forgot about it. It’s been quite uncomfortable for me this week, so I am going to give this a try and keep my fingers crossed that it helps! Thanks for the reminder 🙂