So yeah. I'm trying to remember what I've done over the past 3 weeks. Bit of a challenge in itself considering I have trouble remembering what happened yesterday. Mostly I've been at college, its a lot better than first year I'll admit - whilst we have been thrown right back into it and have already completed the first module consisting of three projects, its fast paced but enjoyable. Plus the social side is improving too; I'm very quiet around people I don't know very well, its a hearing thing, but it's getting better, and knowing sign language is helping even more, as theres a woman who can sign too, and we have a laugh either having complete conversations in sign with everyone else wondering what the hell we're saying, or teaching the others various signs... mostly swearing, haha!
College aside, my health has been... shit. I was doing fine, my last IVs did very little, I blame the constant insomnia I had from the last week of them exhausting me so much that the IVs didn't end up working because of it (don't argue with my logic, it works for me) but I was doing well enough that at clinic last week my dr sent me off with just another appt in a few weeks time, no ivs or anything needed or scheduelled as everything seemed to be going well enough - he'd also ordered some blood taken so they can check my IgE levels and see if we can get me off pred, or at least lower the dose; at their highest a couple of years ago, they were 2000+ b/c of my ABPA, and my levels really haven't been checked at all, aside from my annual reviews, and last time they'd come down to below 1000. However, they really should be below 100. So if they've finally come down, I can get off pred, which I've been on the whole time since I started it nearly 3 years ago. Talk about longterm.
But THEN... I caught a cold. Usually I'm not too bad, I have managed luck in the past to avoid it going to my chest, maybe picking up a bit of an increased cough but nothing worse. This one knocked me for six, and showed every sign of a hell of a chest infection. We're talking low sats, the resulting headaches, coughing 24/7 with a horrendous cough, hemos, coughing till I throw up (resulting in loosing the most amazing cake I'd ever had, so I went back and got one again the next day, HA!) general exhaustion and feeling like crap. So the only choice was to phone the hospital and say I needed IVs. The dr agreed over the phone and had the form sent off before I arrived a few hours later. Unfortunately when I got there, it was the dr I hate, with a passion, who saw me. My lung function dropped 10% in a week, and he said 'well its still quite good' - my ARSE. I don't know why he won't listen but I don't feel like someone with the lung function I have. At the moment its in the 50s, I'm well aware some people would give their left arm for a lung function like that, but I just don't feel like it's that high myself. I'm a bit backwards, my lung function completely doesn't reflect how I feel. It doesn't even help I only managed one blow on the machine before the tech took pity on me and asked if I'd like to stop, as the coughing fit after that one attempt was verging on ridiculous levels.
So IVs were started, I got a lecture off my physio as I said I was too exhausted at the moment to get past 10 minutes of physio, my dietitian took pity on me and refrained from her own lecture on my weight, accepting that b/c of how crap I feel, I can't help loosing weight right now, and it wasn't very much. (But I am trying - the amount of kormas I eat, and constantly stuffing my face with crisps and chocolate. It beggars belief how I loose weight really.) And I also had the usual argument with the dr as I just generally dislike him and I'm sure he doesn't like me as I'll admit that I'm not your average patient and anything that is strange and unlikely will happen to me - probably out of his comfort zone compared to patients who follow the rules and get ill when you'd expect them too and only get side effects that he expects. Okay that sounds like a digression but I'm sure I have a point - for example, this insomnia lark, I'm positive that IVs were to blame, and as soon as the course of IVs finished, my appetite came back and I started sleeping again. I told the nurse when I went for a port flush, and she relayed it back to the dr. Apparently he said that its very unlikely the two are related as insomnia isn't a listed side effect for either of the two IVs I was on at the time. So basically, I deviate from the book, and he doesn't like me for it. Or at least thats how I feel.
This course of IVs seems to be going differently than they usually would. I'm on colo and ceft, and colo usually sends me into a drunken mess for at least a few days. This time that hasn't happened, and although I don't exactly miss walking into walls with more frequency than usual, it's a bit unsettling. I'm not sure if the insomnia will come back this time or not. I didn't sleep aside from maybe an hour or so on monday night (after starting IVs earlier that day) and it can't be just random as I never have insomnia, not like this. If I do, it might keep me up a few hours, but I don't see every sodding hour up till about 6 or 7am, drift off, then wake back up and fail at any more sleep, resulting in effectively being awake for almost 36 hours straight. I did sleep last night, but I'm not sure how much, and I'm not sure if it was just pure exhaustion from coughing horribly, constantly for a couple of hours with no let up, and waking the entire house up in the process.
My head is now absolutely pounding now so I think I'll just add a few photos and then go stick my head out a window as per Gem's advice and see if we can't get my sats back up, at least for a bit.
3rd project - Hands face feet. Creeped everyone out with this doll, haha!
First project of 2nd year - Mask
I got a new tattoo :D This was taken a couple of hours after it was done, it's healed up now and looks a lot better :)
I got a hold of my xrays along with my med records :D The one on the right was 2004, when I was 12, and the one on the right was taken march this year when I was 19. My port looks different, that's cos it is - they're my 2nd and 3rd ports.
2 comments:
Sorry you're not feeling well but hope the IVs get you back on your feet soon and rid yourself of the constant cough.
Glad college is going so well.
Thanks for the post update and those are great photos!!
"GA" xoxo
Dammit how can you still look gorgeous when you're ill!? I had to laugh at your face with the water balloon though!
It'll be interesting how the change back to your old IV duo goes! Hopefully changing things up will work and your chest will behave itself a bit. (Ok, that's a bit optimistic but hopefully it'll keep you feeling better for a bit longer!)
Feel the hell better soon please!!!
Lovelovelove
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