A contentious topic in America and, obviously, in rare disease communities as well is for-profit healthcare. I have strong opinions that healthcare itself, as an industry, should not be for-profit. It makes me extremely uncomfortable to think about pharmaceutical companies, insurers, or hospitals profiting of our disease and our sickness. I do…[Read more]
To be our most healthy self, we have to allow our bodies to heal, relax, and gain strength. This means doing our treatments taking our meds as consistently as possible, getting rest, drinking water, exercising (within our limits), and other things. But it also means recognizing when we’re trying to do too much and allowing ourselves a break.
I’ve found that since I try so hard to always be optimistic and “strong,” that I’m not as likely to reach out for help, advice, or just to vent.
- Are you comfortable asking for help?
- What about for advice or to vent?
- Why or why not? Is there anybody you do feel comfortable reaching out for help?
- What do you wish others understood…
Men need to be able to talk to their friends about their emotions in a healthy way. This is doubly true in the CF community.
- If you’re a man, do you feel able to talk about your emotions with other men? Why or why not?
- Do you feel like it benefits you to do so? (It definitely does for me!)
- How do you think we can make this easier…
One reason I got into writing is because I love how it forces me to seriously reflect on my thoughts and ways of thinking. Writing helps to put emotions into words, improves our emotional intelligence, and improves our ability to communicate. It’s also benefited me by being so vulnerable with others.
- What does vulnerability mean to…
I was talking to a colleague at work about dating. I realized that I carry a lot “baggage” due to having CF and also having lost my sister. This is a weird feeling – I’m open about it because I think it’s important to be, but I don’t want people to feel like they have to feel sorry for me for all of this.
- Do you feel like you carry a lot of “…
Traveling with CF can be very difficult – lugging the vest, compressors, medications, and more is cumbersome and stressful.
- What are some of the most frustrating aspects of traveling with CF for you?
- What are some strategies you’ve found to help alleviate those annoying concerns?
I went to DC for the weekend and I am beyond exhausted. It’s hard to get readjusted for me.
- What are some steps you take to readjust?
- What qualifies as a long weekend for you?
I’m curious to see the diversity of mutations we have in the forums.
- What is your fist mutation?
- Second variant?
- When were you diagnosed?
- Are your mutations rare?
- Any other comments.
- Do you have sinusitis? What about polyps?
- What is your sinus regimen? Steam, rinises?
- How often do you have to visit your ENT doc?
- Have you participated in clinical trials? Why or why not?
- What kind have you participated in?
- What is some feedback you have for those trials?
- Do you feel like your clinic keeps you in the know about upcoming trials?
Copyright © 2017-2019 All rights reserved.
©2019 KLEO Template a premium and multipurpose theme from Seventh Queen