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I've never been a huge alcohol drinker. My parents did the smart thing when I was growing up, and if I asked to taste their drink, they'd let me. I was repulsed by almost everything I sipped that when I turned 21 and could legally drink, I didn't care. I usually only have a drink on the...
I try to do this as often as I can. I search for what I call "butterfly moments" in every day. Butterfly moments because the lives of butterflies are extremely short, and they spend those lives looking for some of the most beautiful things in the world to sustain them during those lives.
I've got a barrel chest and this probably isn't the advice you're looking for, but I'd just try and accept it. I have. Shopping for a bra is a little difficult, since my rib cage is on the large size, but I make do. It's just a part of me, like my short legs (compared to my family) or my large...
Ladybird, have you heard of the Day Designer? It's a pretty expensive daily planner, so I'm not suggesting anyone purchase one, but part of the daily plan is a place to write a daily inspiration. Based on that idea, I make sure to write (using a dry erase marker) on my bathroom mirror something...
Windex, I do have something that's almost like a modern day corset for when I am wearing a dress that needs a smoother tummy area, but it doesn't really "tuck it in." It just smooths my stomach so it doesn't look like I'm trying to chop my stomach in half, haha.
I did eventually get veneers for...
I don't think I can quantify how much of my depression is CF related. I was predisposed because depression runs in my family, so I likely would have experienced some depression regardless of having CF. I'm on an antidepressant, but I don't use it to fix my depression. The med only allows my...
I must've had an extremely different school experience because I never minded going to the office to get my pills. The entire school knew I had CF because my dad and I did presentations for every class at the beginning of fundraising for the CFF, but I never felt ostracized for it. I'd walk to...
I've had pseudo for so many years, I can't remember a time when I didn't culture it. For the most part, the inhaled antibiotics work for me. I tend to need two tune ups a year for pseudo infection. The "nice" thing about pseudo for me is that it's a slow infection. I can tell weeks in advance...
You know your body better than anyone else. If you think your body is telling you something, listen. My lung function is not as good as yours, but when I'm healthy my O2 levels are about the same. Ask for a sleep study to check your overnight O2 levels. I was feeling extremely run down, despite...
I take a few antibiotics all the time. I am always on an inhaled antibiotic for pseudo. I've taken azithromycin three days a week for as long as I can remember. I contracted MRSA in July of 2013 and am now always taking an antibiotic pill. I take bactrim one month followed by doxycycline the...
I've had so many PICC lines, I've lost count. Working isn't a problem. I was told to carry on with normal activity (as tolerated by how I felt), and the only restriction I had was to not lift anything above 30lbs. It cannot get wet, so the area must be wrapped for showers, and any other...
I don't really have any advice, but I offer my misery with Aetna. They've been denying my sister an MRI for severe back pain and now they're denying coverage for a few days of my most recent hospital stay. They've given me the most trouble out of every insurance company I've ever been with.
Beginning when I was 14 and lasting until I was 18, I had hemoptysis episodes much like the one you are describing. They happened every three months, like clockwork. I'm not even joking when I say within two days of any scheduled clinic visit, I would be coughing up large amounts of blood. I'd...
All my refrigerated meds have their own shelf in the refrigerator. All my other meds are stored in a tub in the pantry, and I keep a weekly pill container, separated into mornings and evenings for each day, on the kitchen table. My vest and nebs are kept in a small cabinet in my family room...
I had something similar on Thanksgiving. It was a sharp, stabbing pain. I got in touch with my docs and they thought it might be a mucus plug since I wasn't displaying any other symptoms. I'd definitely call your doctor, though.
Wondering about CF care in Denver & TX program
I go to National Jewish and love it. I typically see Dr. Saavedra, although I've met with all docs on staff and don't really have any complaints. Each doctor has his or her own style, but they're all dedicated to treatment and prevention.
I'm...
I have to side with Dank on this. Reading this thread has made me a little uncomfortable because a lot of suggestions of things to avoid are the very same things I did growing up. I helped my dad dig a pit for the sandbox. I swam in any body of water I was allowed to. I jumped in huge piles of...
I played sports from the time I was five until I was 14, when I had to stop playing the sport I love (volleyball) because of my feeding tube. I became horribly out of shape, but recently started swimming. It never really feels like a workout, and it centers me. I strongly think that my swimming...
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