I don't have much to update on, or even anything to ramble about. I know that Bree is doing really well now, and has written her first post-tx blog post! I got my medical exemption certificate, which now means that I don't have to pay for my prescriptions because I have a port (even though not all doctors agree that a port-a-cath is a 'indwelling fistula device'). They haven't yet got CF as an official claim for medical exemption, but there's another 5 years till I need to get this renewed. I hope they get a move on though; its ridiculous how much we get from the pharmacy, and even more ridiculous if you have to pay for it all, seeing as you hardly asked for this illness.
I officially cannot wait to get these IVs finished. I had actually hoped they'd do a bit more for me (in other words, I'm still coughing probably just the same amount, but its less 'death rattle' now). than they have so far. I suppose I can hope that the last day or so will bring a big boost, even though I'm feeling pretty good despite the current cough (I don't think IVs will ever completely get rid of it now) or the left over pleurisy. Or, I can hope that the IVs will actually kick in after I've finished them. I've heard about that happening to some people.
I don't know if you've noticed, I've added another thing to my 'list'... I want a tattoo. Haha. I've always been iffy about tattoos; I don't like them much unless they're really nice, or there's a good meaning behind it, which brings me to what I want for a tattoo - I want it to be simple, just 'Breathe' and I want it on the back of my neck. Then its also easily hidden underneath my hair. I know some people wouldn't get it why I'd want it to say 'Breathe' but those people don't know that I have knackered lungs! Its not really a negative reminder of CF - its a goal I want to reach one day; to be able to breathe clearly and freely.
I've made a few doodles of it, but obviously won't be getting it done this second. For starters, if you're not going with you're parents, you're supposed to have ID to prove you're over 18 or 21, I forget which age it is. And the fact that I don't have any decent ID would put these permanent doodle plans on hold for a bit.
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First and last of 2018
Oh dear. I think this is a new record, one post for the entire year (Technically. I wrote on 1.1.18 but its likely I wrote it a few days bef...
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I am the worlds worst blogger, although this is for many a reason. As always I blame the whole writers block thing, although maybe this one ...
2 comments:
Hey - isn't it great that people can just be accepting and not judgmental.
Keeping my fingers crossed for you for tomorrow.
Mad x
So question...You get IVs done at home?? Is it Anti Biotics?? Is it considered your "clean out"??? Is it an option to do this at home in the UK???
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