Friday, 27 March 2009

Time is an overrated thing.

I can officially say that I take being blonde to new heights. On Tuesday, I walked into a door. A door that was locked, which wasn't my fault, but I had put my hand out to push the door open, and instead of realising that the door was locked and that I wasn't going anywhere in a hurry, I kept on walking and now have a lovely purple thing in the middle of my forehead. Ouch. To add insult to injury, it was in front of a bunch of twittering yr 10s were waiting by their classroom, next to the door, and probably fell about laughing the second I managed to get through the other door. (It was double doors. Just my luck that I chose the locked door first.)

I know I complained (what a shock) about the fact that I got a cold just as my IVs were finishing, and guessed that it wouldn't end well for my coughing-state. (And I was right.) But the thing is, IVs seem to fly by, but at the same time, seem to take forever. Two weeks is probably a preferable time of IVs for any CFer, providing the IVs work, and for me, they usually do. I can remember when I used to have IV lines in my arm or wrist. (We called them 'long-lines', which is a suitable name to explain them on the kids ward.) And the IVs would seem to take months, although this was down to the fact that those things were down right uncomfortable. The only way I can closely describe having a 'long-line' shoved up your vein, is to imagine a pipe-cleaner. (Those fluffy-ish, yet bendy things you'd love to play with in reception or nursery.) That is basically what it felt like, although maybe my veins were packing up there and then, as this was definitely the sensation I felt for my last two or three hand/arm IV sessions when I was 11. The feeling that something fuzzy, that didn't belong there, was slowly moving up my arm or wrist, was fairly disgusting. I'd go as far to say you could imagine a tape-worm wandering about under your skin. (Don't blame me for your choking on your food, you shouldn't be eating and reading this stuff in the first place).

Although now I think about it, that was a fairly graphic paragraph. You wouldn't think all that when you see someone with a drip hanging from their arm, would you.

Theres a lot of things that seem to take forever when you have CF. You'd think spending half your life in hospitals or waiting rooms would make you more tolerant. Well, maybe for some, but not for me. In fact, I'm likely to be the first in line to complain when I'm waiting for something. More than once, in various hospital waiting rooms (especially at the hospital I go to for my hearing) I'll often say 'But that's not fair, I was here first!' when someone gets called by the grumpy looking nurse in the waiting room. And it is true, I was there first. Its not my fault that my Doctor seems to be a bit picky on who she sees some days.

Ohh, something you have to check out, Meghann's blog, Queen of the O2 people, has a hilarious list, 10 ways to know you're on the lung transplant list. I'm not on the list myself, but somethings I already do from that list, like the blowing smoke rings with my nebuliser!

My next clinic app is about a week and a half away. I'm quite apprehensive about it to be honest. Theres that whole thing with the two Doctors thinking I didn't want IVs when the whole talking to actually turned out to be pointless, and the fact that whilst those Doctors are great, and probably get on with every other patient that isn't me, I just want to go back to the Doctor that I usually see. The past two appointments were with Missy Doc, but before that, I always saw my usual Doc (Who looks suspiciously like Ken Lerner). It's different being in adults compared to paeds. He's the only consultant I've had that talks to me, who makes sure that my next appointment or IVs are not bang slap in the middle of an important date (like exams, not something like a party :P) and he actually listened when I suggested getting off Tobra for a bit, and changing to something else (Thus resulting in the whole Colostin doo-dah, but either way, that antibiotic worked).

The point is, I want a doctor who will talk to me, regardless of the fact that I'm deaf. I honestly appreciate anyone's attempt when they talk to me rather than getting someone else to tell me something.

1 comment: said...

I'm kind of the opposite in which I think CF has played a huge role in making me super patient. I figure that everyday I'm able to take a breath is a great day and I'm just here to enjoy the ride.

I hope your clinic appointment goes well! I have mine coming up in about 2 weeks and we'll see if all this hard work is paying off.


Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...