Em, your whining less than me right now-so that's still good:)
With regards too the Tobi-are you on one month on, one month off? If not ask your docs why not, as the new month on month off thig is much better for you apparently. Also it means you cn do some planning too ensure that everything fun is happening in your month off Tobi.
With me at the minute-they want me too have these antibiotics, that mean I can't have paracetamol for the 2 weeks I'm taking them, and I can hardley move through pain without paracetamol. I told them I'm just not going to take them, as another thing is, it's 4 doses in a day. I struggle with remembering 2 doses.
Basically they've said that I should be able too manage 4 doses in a day, and that they don't react with paracetamol. I can't understand why it would say on the leaflet "do not take with paracetamol" if their wasn't really a problem. Especially as the leaflet was only revised in July 2007. And, it also says you must not miss a dose, and must tell your doctor if you do miss a dose-jeez, I'd be having to ring eery day. I've never seen that warning on meds before-I've only ever seen it as, move onto your next dose and don't make up for the missed dose. There's gotta be something major problem with these ones if it says that you have too ring your doc.
It's like they promote you to make your own decisions, but then purposely tell you a load of rubbish, and make you feel guilty, until you conform too what they want. Just remember though-they can only advise not order, and should be advising you of all options available. They have too accomadate your needs. Now adays adult care is all about
managing your condition, and you can't manage if you feel you can't live your life because what they give you gets in the way.
Friends with CF are in my expericance invaluable. At the kids hospital-we weren't stopped from mixing. They did the sensible things like put us all in seperate bays, and never introduced us. But there wasn't the blanket ban like there is now a days. I remember 2 occasions, where me and other CF patients, along with physios, all went too play football on the park. Our CF teams now would throw a fit, yet back then they just let us. We were going to be mixing anyway-may aswell get some excercise done while were at it.
The silliest thing now, is that my unit even advise that I don't meet with my brother, who also has CF. It is beyond ridiculous. They didn't seem impressed, when I went with him, while he was in hospital on IV's, to a nearby shopping center. They were fine when they thought he was going alone-but going with me suddenly it wasn't good idea.
All CF patients now, are banned from being in the canteen at the same time, yet we are also hidden, and not supposed too know the other patients. I think they must want us all too have "cf patient" tattooed across our heads, so we know who too avoid lol.
Another thing hun-be loud and proud-if you feel uncomfortable with something let them know, it's their job too find an alternative. It should be your choice how you use what they give you. They really only can and should advise you on your options, the decisions should be yours too make. What ever you think is in your best interests.
Love and uncontaminated hugs