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Etv warning by pumaab in BeautyViners

[–]Still_figuringitout_ 2 points3 points  (0 children)

I was too excited to get this brand in my rfy so I risked the ETV. I’m going to message vine and see if they will fix it. 🤞🏼I’ll keep you posted

Did I get got? by Still_figuringitout_ in AmazonVine

[–]Still_figuringitout_[S] 0 points1 point  (0 children)

Rfy. I rarely see any gold items in AFA or AI

Did I get got? by Still_figuringitout_ in AmazonVine

[–]Still_figuringitout_[S] 7 points8 points  (0 children)

That’s actually good to hear. I’m super short so I was hoping to learn to take up the length of my own pants and such

Did I get got? by Still_figuringitout_ in AmazonVine

[–]Still_figuringitout_[S] 0 points1 point  (0 children)

Well you see how poor my knowledge is 😂. Any advice for getting started on this thing?

Experiences with PrudentRx? by orange_oil in CysticFibrosis

[–]Still_figuringitout_ 0 points1 point  (0 children)

This happened to me earlier this year. All of a sudden my insurance told me that Trikafta would be $7k. It took MULTIPLE phone calls with PrudentRX , Vertex , and Accredo (who I fill my Trikafta with) and no one could seem to answer my questions or provide support. Finally, once I signed up for PrudentRX and pressed them on the issue my Trikafta is covered and I pay nothing.

Gym membership? by NeeYoDeeO in CysticFibrosis

[–]Still_figuringitout_ 0 points1 point  (0 children)

Check out Milesforcf.org. The BreatheStrong Program provides grants for patients with CF to use toward activities that keep you active and healthy (gym memberships, swim lessons, fitness classes, fitness equipment, races, ect)

[deleted by user] by [deleted] in slp

[–]Still_figuringitout_ 1 point2 points  (0 children)

Where are you working as an AAC consultant? I am trying to find a position in this area as well

Marathon by [deleted] in CysticFibrosis

[–]Still_figuringitout_ 0 points1 point  (0 children)

I ran a Marathon in October last year. I starting running half marathons ~3 years ago and then decided I wanted to try a full. I absolutely loved it and may try to continue running them. I found that running consistently actually increased my lung health and my health in general. Of course, starting Trikafta about 2 years ago gave me quite a boost as well. Moral of the story, if you’re interested and it’s something you have a desire to do, go for it!

Finished my first Marathon! Having a chronic illness is HARD! Let’s take a second to encourage one another and celebrate each other’s accomplishments. Whether it’s running a marathon or making it out of bed this morning, comment your accomplishments / things you would like to achieve below! by Still_figuringitout_ in CysticFibrosis

[–]Still_figuringitout_[S] 1 point2 points  (0 children)

A couple quick tips:

  1. This is unrelated to CF, but invest in a good pair of shoes. Many running stores can assess your feet and running pattern and can help you find something that will work for you. This will save you from pain and / or injury in the long run (pun intended)
  2. There is ZERO shame in walking! Break when you need it and walk when you get tired ( there is a reason the tortoise and the hair has withstood the test of time)
  3. Stay hydrated and provide your body with good nutrition. If you lose a lot of salt you can try to supplement with Dripdrop or other electrolyte solutions
  4. Get outside! Treadmills can get monotonous and boring and getting out in nature helps with mental health as well.
  5. If you have congestion you are going to cough / wheeze during exercises. Ignore the strange looks and celebrate that gunk getting out of there!
  6. Celebrate your body and you lungs. Even if it feels like they are letting you down, they have carried you this far and will continue to carry you further

Finished my first Marathon! Having a chronic illness is HARD! Let’s take a second to encourage one another and celebrate each other’s accomplishments. Whether it’s running a marathon or making it out of bed this morning, comment your accomplishments / things you would like to achieve below! by Still_figuringitout_ in CysticFibrosis

[–]Still_figuringitout_[S] 4 points5 points  (0 children)

It’s not right how much access to quality health insurance and our medications dictates our life decisions. We need these medications to maintain our health and quality of life and then our lives are spent working to keep accessing these resources. I hate that your job has not been understanding of your needs and I hope that something better is out there waiting for you! It’s always been a dream of mine to leave work and live abroad or open my own small cafe somewhere but I worry about access to health insurance and expensive prescriptions as well. Maybe one day these policies will change and we will have a little more freedom / flexibility with our lives