Recent content by mamaScarlett

  1. M

    IV ball options?

    Oh also-one of my meds wasn't available via eclipse, the imipenem. It was that particular home care co didn't carry it. So my nurse opted for a different home care co that did carry it. Imipenem-similar to Meropenem-can't be pre mixed in the ball ahead of time. So a simple solution is, they give...
  2. M

    IV ball options?

    Hi, I'm on Imipenem, Tobramycin and Vancomycin all via eclipse. They're also giving me 500cc a day of hydration via eclipse. I'm hooked up much of the day but I don't care-anything is better than a pole in the house or pump beeping all night!
  3. M

    How do you avoid the pity party when you tell people you have CF?

    I think most people see me living my life to my full, they don't feel the need to pity me and see that I don't have time for pity! I hate pity. I do like understanding-but they are very different things. In a situation like not being around smokers, I remind myself I'm not that different from...
  4. M

    What does your CF Clinic say re Exercise

    My clinic says exercise is crucial and encourages as much as I can do. Right now I run about 12 miles a week, and do core and weights in between running days. Hydration and salt replacement is vital. There are good products for runners/athletes that are great for Cfers. Sport beans-an...
  5. M

    CF Clinic + Holistic medicine, does it exist? America or Europe?

    My C doctor is extremely supportive of holistic treatment in conjunction with medical treatment. She even has acupuncture, massage, ect treatments for in hospital patients. She always suggests natural type treatments at the first sign of a cold or virus in addition to our arsenal of medical...
  6. M

    Can cleaning products make you cough up blood?

    For me, absolutely. I never cough up blood. Once in a blue moon if I'm forced to work with bleach based cleaning products I will have streaks of blood or even tiny dark balls of it. For this reason I got rid of all harsh cleaners from the house, but especially bleach. If there is mold/mildew...
  7. M

    AffloVest : any experience or thoughts

    I would love to try this. I found it on Pintrest of all places, and watched some of the videos out there. I don't see a chance in getting insurance to pay for it, or even to 'rent' it to me, since I already have a hillrom Vest under my current policy. But I'd love to try it out. Having 3 kids in...
  8. M

    Where are all the people with CF on this forum when you need support?!

    Support is an EXTREMELY important part of Cf, and emotional health too. Since Cf is an isolating illness, its even more important. I believe for too long its been an overlooked aspect of Cf care. I've been coming to this site for 10 yrs. When I come here, its not to get scientific...
  9. M

    We remember Jazzysmom. 5 years

    I remember her kindness as I was a new patient at old St. Vincent's, getting settled in my room for my very first stay there. She was always very sweet, to everyone. As was her adorable little girl who is likely growing into a lovely young woman now! I will always remember Melissa's kindness...
  10. M

    Anyone allergic to Levaquin still able to take Cipro?

    Cipro doesn't bother me at all, while I have trouble tolerating Levaquin for sure.
  11. M

    What does life look like after CF diagnosis?

    I'm sorry for the stressful situation you're in, no doubt you have many questions and what ifs about your baby girl. (congratulations on her birth, btw :) I was diagnosed at 1 yr old, so Cf is all I've ever known. My situation is a little different bc I'm the mama with cf, to a 2nd grader, 3 yr...
  12. M

    Red Band Society

    Not realistic at all, but I didn't expect it to be, being on primetime tv and all. I did have a few laughs at some scenes, which reminded me of life back in the day-80s, 90s, we did stay in the hospital sometime for months on end and many funny situations where kids 'bent' the rules and got into...
  13. M

    Disney DAS Cards

    The new DAS card is by no means a no wait card-no such card exists now. It has your picture on the front, and lines on the back for cast members to write a time slot window for you to return. So what we do is, go to the attraction, get a return time window, (it is usually giving you a full hour...
  14. M

    Cowardly Private Messages

    Yes I did too. Glad to hear this has been taken care of.
  15. M

    Levaquin Experiences

    No mental symptoms, but I did sprain my ankle while on Levaquin, and it was from a very minor bang-nothing worthy of causing a hairline fracture. That was a red flag of concern. If your son is having symptoms like that, such severe mental confusion, I'd obviously take him off but tell the doctor...