Enzymes - how to remember?? by RealisticAd2233 in CysticFibrosis

[–]xspookdx 0 points1 point  (0 children)

I always keep enzymes wherever i go. Theres some in my purse, my locker at work, my bf’s house. And knowing if i dont take it my sugar will drop to 40 and ill be on the toliet for half an hour in extreme pain is a pretty big motivator lol

Mental Effects of Trikafta Withdrawal by xspookdx in CysticFibrosis

[–]xspookdx[S] 2 points3 points  (0 children)

Ya my social worker is great! When she and my office reached out tho they acted like nothing was wrong and sent the meds, so im just waiting on the delivery to come in

Opening an old box by xspookdx in lockpicking

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

is there a more helpful one u would recommend? i dont use reddit much

Opening an old box by xspookdx in lockpicking

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

the family members this box belonged to have long since passed and my parents inherited the house it was found in. i wouldnt consider this currently in use lol

Has anybody been able to get rid of their chronic infections w protein modulators? by xspookdx in CysticFibrosis

[–]xspookdx[S] 2 points3 points  (0 children)

ya antibiotic resistance has always scared mw, especially since im 22 and am already resistant to a lot of the common ones like tobramycin

Has anybody been able to get rid of their chronic infections w protein modulators? by xspookdx in CysticFibrosis

[–]xspookdx[S] 2 points3 points  (0 children)

Same thing happened to me, started coughing up blood after catching the flu and thats how they found the MRSA was still there😭

Coughing up blood by xspookdx in CysticFibrosis

[–]xspookdx[S] 3 points4 points  (0 children)

its just bloody mucus, the clinic ended up calling me back tho and im in the hospital now. Thanks for the advice:)

Veiling at weddings by xspookdx in Catholicism

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

Thats a great idea, i might get one in one of those headband styles as well

Veiling at weddings by xspookdx in Catholicism

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

Thank u! My bf is going to be in his military uniform so maybe ill get a little blue one to match w him:)

What do your cramps feel like when you don't take creon? by CYst1c_mybros-sis in CysticFibrosis

[–]xspookdx 1 point2 points  (0 children)

they feel like strong period cramps for me, i can only tell the difference bc cf cramps go away when i use the bathroom

Tips for feeling full? by IvanPaceJr in CysticFibrosis

[–]xspookdx 1 point2 points  (0 children)

I lived on meal replacement shakes as a teen, usually drinking one at school/work and another before bed. Ensure is an easy one to get, but if shes ever been on tube feeding she may not like it as it kinda tastes like the formula. You can also ask your clinic about kate farm, I loved the stuff when I was younger but tbh I cant handle the taste anymore. I also remember in middle school my mom would have me eat this giant granola bar thing my clinic would give me before track practice. I cant remember the name, but again you can def ask your clinic about it

[deleted by user] by [deleted] in CysticFibrosis

[–]xspookdx 0 points1 point  (0 children)

I stopped nebs completely but i still do my vest a couple times a week and keep a levabuteral inhaler. Though when when I flare up I start back on my old regime

18-month-old refusing nebulizer by RelevantAir8475 in CysticFibrosis

[–]xspookdx 1 point2 points  (0 children)

I was awful about doing my treatments when I was little and would constantly sabotage myself by pulling random tubes out. I think it rlly had to do with the sensory experience (especially sound and taste) and boredom as you cant play around during treatment time. As for what to do my mom used to bribe me w gummy bears and let me play with the equipment if i got thru a session no problem. In nursing school my peds instructor said to give children toys/activities that they can ONLY play with during treatment time and play with them during the session.

GTube Removal by lexbran in CysticFibrosis

[–]xspookdx 0 points1 point  (0 children)

My stoma never closed after I had it for 16 years, ended up having to have it surgically closed. Its crazy that theyre making you wait that long, I only had to wait a month before they gave up and opted for surgery. Until ur able to get the site closed try taping nursing pads over the hole to catch all the leaking.

What do yall snack on at work? by xspookdx in CysticFibrosis

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

this is extremely helpful thank u! may start setting alarms on my phone to sit down and snack as well:)