Forum Replies Created
November 17, 2021 at 5:48 am #17704
Trikafta actually made my GI issues quite worse. I was never able to change my enzyme dosage and many of my symptoms got worse or were more active. However, I didn’t fully realize this impact until coming off of Trikafta (because the mental health side effects). Things have definitely improved with my GI situation since stopping Tri thankfully.
August 19, 2021 at 2:17 pm #17349
I am soooo dang excited about fall!
This summer has been particularly hot and smoky and I’m ready for cooler weather and hopefully some cleaner air before the winter inversion hits.
we are hoping to go to the zoo (during a private event which means limited people, yay!), explore Red Butte gardens while it’s a bit cooler, and maybe do a little fall hiking if my lungs will cooperate. I also really want to go apple picking, even though apples don’t agree with my stomach lol.
As far as appointments, getting these asthma symptoms in better control is at the top of the list along with having a plan with my therapist and psychiatrist as winter isn’t far behind fall, and my depression definitely gets worse in the winter months.
July 8, 2021 at 3:03 pm #17156
I actually grew up going to CF camp in the summer! It was a week long, and obviously before anyone realized the risks of cross infection. It’s one of my favorite memories and I was devastated when it all ended, though I understood why. Since it was CF camp I was on top of all my treatments and meds, it was part of the ‘schedule’. While I was responsible in the care of my health, we found other ways to be rebellious!
July 8, 2021 at 3:00 pm #17155
I love the taste of Hawaiian style shaved ice, soft serve ice cream cones, a cold crunchy pickle or a cold Topo Chico.
I love the smell of the forest and lake water, but my favorite smell is probably rain on hot cement. However, I haven’t been able to really smell anything for years, so this is based of memory!
<p style=”text-align: center;”>I love the feel of the grass on my feet or I’m some sand. I love the feel of water on my skin. Dipping my toes or feet into some kind of body of water, preferably something in nature (lake, river, etc) as opposed to a pool.</p>
June 23, 2021 at 12:01 pm #17093
My morning routine sometimes varies a bit day to day, but it’s something that’s important to me and makes me feel grounded at the start of the day.
1. Get up and pee then take the dog out.
2. Water, coffee, morning meds and treatments.
3. Journal, meditation, then breakfast.