I'm tired, and grumpy and bitchy b/c of it. And really short of breath with minimal energy. I decided to have an enshake the other day. And I always put it in this bottle thing to shake rather than stir like hell, as it's easier. And I got exhausted pretty much as soon as I picked the damn thing up. I had to get my dad to shake the drink up for me instead whilst I stood there pathetically, feeling like shit and contemplated dying all over the kitchen floor to demonstrate what a dramatic child I am.
I keep wondering why these IVs wore off as quickly as they did this time. It's similar, but also different to last year. My first IVs of last year made me feel like death b/c Mero decided to be a total bastard to me and pretty much render me comatose for a couple of days. Or at least that's how I remember feeling like. I remember sleeping for about a day and a half and waking up starving. Anyway. My point is, almost right after these IVs I needed MORE IVs consisting of more competent abx and thus making me decide that I'll probably never touch mero again without a barge pole. It brings me back to now, where I'm 4 weeks out of my last dose of IVs and wondering who the hell fucked off with my feeling good-ness. I feel like I need IVs again. I probably won't get them at this point. But it doesn't magically make me feel better if I'm told to wait.
It just feels like 2009 all over again, where IVs are being total shits and not working for me much. I WILL be pissed if the same thing happens, where basically no IVs all year seem to get me back to where I'd prefer.
Every time I cough its like every breath has been knocked out of me. I feel like I'm at a low point. But I'm not, not really. Not with all this progressive shit CF likes to do. For all I know, this could be my new normal. I'm tired all the time.
It'd be much better if they could find more meds which would tackle whatever is causing the problems (I'm guessing Pseudo. It always was an attention seeking little bitch). The meds they know that my pseudo is sensitive to are:
Ceftazadime - Which I've had as one abx in every dose of IVs probably since I was 6
Tobramycin - My Dr is reluctant to give me this to prevent 'more hearing loss'. Which I agree with, but also reply with 'Is that even possible?'
Cipro - Not fucking likely. I'm pretty sure I'm resistant now.
Meropenem - Why I'd want a repeat of last time is beyond me. So... maybe not.
Colistin - Which I now have as the second abx in all my IVs since stopping Tobra.
There. So, I have ceft and colistin every IVs. I really, really want these to keep working for me, as I don't have a lot of choice left. Unless you'd like to eradicate my Pseudo entirely for me?
Even despite the rubbishness, I still got these photos. I like them. It's from my bedroom window, and seeing as I pretty much didn't leave my room all day on Weds, it wasn't exactly a hard missed opportunity. All I had to do was pick up my camera which was about a foot away. And clickclickclick.
And finally, not forgetting the hot chocolate which I had. Seriously makes everything better. And yeah, that's a 'Lost' mug. I'm erm... slightly addicted to the show. Please excuse the fact I look like utter crap here, b/c I couldn't care less.
5 comments:
there are other antibiotics, aztreonam and tazocin off the top off my head, maybe ask for some different ones next time?
I'm on Timentin for Pseudos, works for me.
Hey,
Timentin also works well for me as does tazocin. these days i either have one of those plus tobra. sometimes i have cefepime, which is similar to ceftaz. Ceftaz doesn't do much for me anymore, and meropenem makes me really sick, although it does a pretty good job of sorting out my infections.
hope u feel better
aussie
Maybe you could try having 3 lots of antibiotics for your ivs, I have 3 antibiotics for 3 weeks, works well with me. And also maybe try other ones like the orhers suggested.
Do you have many antibiotics to take in between your ivs?
Hope you feel better soon, love the photos, there really cool!
Sorry you aren't feeling well and the Mero is giving you trouble. I was put on Mero for pseudo this last admission and it made me feel like crap. They wanted to keep me on it and just "pre-medicate" me and I told them no. I was throwing up all day and didn't want to keep doing that. So they put me on an "intermediate sensitivity drug", which seemed to do ok, but didn't knock it out completely.
Yes, there are other antibiotics, but you have to be sensitive to them for them to work. And pseudomonas has its limitations on drugs that kill the bacteria. I ended up getting Tobra each time with whatever other iv abx I am taking. I'm also doing TOBI. And my hearing has not gotten any worse over the last 6 years or so. So it might be worth a try despite what your doctor predicts. Tobra is one of the best drugs for pseudo. Praying you feel better and can avoid another round of IV's for a good while.
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