So whilst I have been shrivelling and sickening, the cosmos (and one lovely Laura Sparling) have been hard at work getting another List item crossed off with minimal effort from me. Happy news! Remember I posted about Laura's Lonelies Giveaway?? Well, get this - I WON.
I do not win stuff, okay? This is so unbelievably unlikely that I actually thought someone was playing an elaborate and cruel prank on me. But no, it seems that I actually have won something, and it's really rather a beautiful prize! I can't wait to receive the beads and touch them and play with them. It might be a while but I will be sure to do them justice as best I can and give them happy homes in pretty pieces. Thanks again Ms. Sparling :)
Showing posts with label bucket list. Show all posts
Showing posts with label bucket list. Show all posts
Wednesday, June 16, 2010
Friday, May 14, 2010
Making an Effort
So I think I'm just going to write about what's been happening in the hospital, more for myself really than anything so that I can refer to it next time and remember what caused which side effects! But also just to try to get all my complaints out for a while.
SO I came into hospital on Wednesday 5th, and was put straight onto Meropenem 3 times a day and Tobramycin twice a day. This was followed by the usual general exhaustion and nausea that I expect from IVs, but on Friday they added in Co-trimoxazole 4 times a day and things really went downhill... Crazy sickness and eating or even drinking water became an impossibility, by Saturday evening I decided to refuse the Co-trimoxazole and went back to just Mero and Tobra.
On seeing the docs on Monday they decided to switch the Tobramycin for Colistin IV since there was no real improvements happening, assuming I would be fine with it because I can tolerate it nebulised... wrong again! Tuesday I woke up so low on energy I couldnt talk or move, was flat on my back all day and it didn't help that that was the day my dad went back to Jersey aswell, so I was left all alone in that state! Everything felt heavy and broken, was finding it hard to breathe like someone was sitting on my chest and squishing my ribs, so Tuesday afternoon was taken off the Colo and left with just Meropenem... fine by me as I'd become used to the effects by then, though a worry that they originally wanted me on 3 antibiotics to have the best chance of fighting my Cepacia, and I was left with only one.
And well now, here we are, Friday afternoon. I think I have just about got back to the level of how I felt on my first day here! haha. Talked to the doctor this morning and he said rather than start me on the only other drug they can think of, Amikacin, (Tazocin, Gentamicin and Ceftaz are out due to allergies) and me have to stay another whole 14 days, they will just leave me on the Mero alone for 3 more days. To me it sounds overly-optimistic to think I could be well enough to go home in 3 days but we'll see, fingers crossed! I'm telling you now though, there's no way I'll be going without a fight if they try to send me home and I'm not feeling any better, no way I'm going to have lasted this out for nothing!
I'm sick, in agony, bored, lonely, tired, dirty, frustrated and hungry, but hopefully it will be for a reason.
And now the whinge is over. I will be making a real effort over the next few days to be POSITIVE!! Which if you know me is a bloody hard task. I am probably the most negative, pessimistic person you could find. Depression loves me.
But: I have been talking with my lovely friend Jordanna, and we are hoping to put some plans into action over the summer to do some fundraising - it is something we both want to do, will make us feel good and get another thing crossed off my list :)
I have also spoken to my friend Ollie who is super special to me and we hope to go on a hot air balloon ride over the summer, another list thing; and also hoping to go on a couple of travels with people - health (and money!) permitting of course.
I really want to actually get these plans into action and DO some things rather than just dream and talk though. Back in January when I was really poorly and the doctors were telling me I had maybe only two years left in this world unless I got a transplant, my dad and I made lots of grand plans and had big ideas, but none of them ever really got off the ground. Now its 4/5 months later and some of the things on my list are crossed off but I really want to create some experiences and memories with other people as well as the things so far which have been mostly more perosnal "achievements", if you could even call them that, like getting my piercing and tattoo etc.
I want the second half of 2010 to be different. I don't want to be looking back at the end of the year, as I did in December 2009, and be so thoroughly disappointed in myself and feel that I've wasted some of my precious time, what could theoretically be half of my time left altogether. You just never know what's going to happen. In the last six months-year we have lost so many CFers and I'm realising now that most of them weren't expecting to go... it just took one quick unexpected infection, one course of drugs that didnt help like they usually did, or a call that never came and then BAM, things were over.
It's not cancer, we aren't going to get told, "OK, you have 3 months to live, go out and enjoy it well". We need to live every day as if it is our last because it really could be, this is true of anyone ofcourse but even more so with CF... I just need to keep that in mind as much as possible, and hope you guys will too! We have been dealt a shitty hand but it could definitely be worse, and our lives are too short and prcious to be spending time miserable or doing pointless things that make us unhappy.
Ok, well that got maybe slightly depressing but I meant it to be positive, I promise!
On a happier note, I think my dad is coming over tonight, I will have company and we will hopefully go out for some nice food. I need to get clean though!
Also I am so so grateful to those of my friends who have sent me things in the post which arrived today - Jordanna sent a book, Alice in Wonderland so that I can read it as it's on my list, Tiff sent me a lovely letter with some photos and a little "Happiness Kit" which I will post more about later! And Annie sent a cute card with some little teeny toy animals (she works in a toy shop hehe). Along with the card Megs sent me earlier in the week, these simple things have brought some sunshine to my stay, it's nice to know that when you're feeling so low and forgotten that people really are thinking of you and will make the effort to let you know.
Ok, I think I've probably bored the socks off you now so well done if you are not snoring with your head on the keyboard! Bath time for me now. So much love to you all and I hope you are well and happy xx
SO I came into hospital on Wednesday 5th, and was put straight onto Meropenem 3 times a day and Tobramycin twice a day. This was followed by the usual general exhaustion and nausea that I expect from IVs, but on Friday they added in Co-trimoxazole 4 times a day and things really went downhill... Crazy sickness and eating or even drinking water became an impossibility, by Saturday evening I decided to refuse the Co-trimoxazole and went back to just Mero and Tobra.
On seeing the docs on Monday they decided to switch the Tobramycin for Colistin IV since there was no real improvements happening, assuming I would be fine with it because I can tolerate it nebulised... wrong again! Tuesday I woke up so low on energy I couldnt talk or move, was flat on my back all day and it didn't help that that was the day my dad went back to Jersey aswell, so I was left all alone in that state! Everything felt heavy and broken, was finding it hard to breathe like someone was sitting on my chest and squishing my ribs, so Tuesday afternoon was taken off the Colo and left with just Meropenem... fine by me as I'd become used to the effects by then, though a worry that they originally wanted me on 3 antibiotics to have the best chance of fighting my Cepacia, and I was left with only one.
And well now, here we are, Friday afternoon. I think I have just about got back to the level of how I felt on my first day here! haha. Talked to the doctor this morning and he said rather than start me on the only other drug they can think of, Amikacin, (Tazocin, Gentamicin and Ceftaz are out due to allergies) and me have to stay another whole 14 days, they will just leave me on the Mero alone for 3 more days. To me it sounds overly-optimistic to think I could be well enough to go home in 3 days but we'll see, fingers crossed! I'm telling you now though, there's no way I'll be going without a fight if they try to send me home and I'm not feeling any better, no way I'm going to have lasted this out for nothing!
I'm sick, in agony, bored, lonely, tired, dirty, frustrated and hungry, but hopefully it will be for a reason.
And now the whinge is over. I will be making a real effort over the next few days to be POSITIVE!! Which if you know me is a bloody hard task. I am probably the most negative, pessimistic person you could find. Depression loves me.
But: I have been talking with my lovely friend Jordanna, and we are hoping to put some plans into action over the summer to do some fundraising - it is something we both want to do, will make us feel good and get another thing crossed off my list :)
I have also spoken to my friend Ollie who is super special to me and we hope to go on a hot air balloon ride over the summer, another list thing; and also hoping to go on a couple of travels with people - health (and money!) permitting of course.
I really want to actually get these plans into action and DO some things rather than just dream and talk though. Back in January when I was really poorly and the doctors were telling me I had maybe only two years left in this world unless I got a transplant, my dad and I made lots of grand plans and had big ideas, but none of them ever really got off the ground. Now its 4/5 months later and some of the things on my list are crossed off but I really want to create some experiences and memories with other people as well as the things so far which have been mostly more perosnal "achievements", if you could even call them that, like getting my piercing and tattoo etc.
I want the second half of 2010 to be different. I don't want to be looking back at the end of the year, as I did in December 2009, and be so thoroughly disappointed in myself and feel that I've wasted some of my precious time, what could theoretically be half of my time left altogether. You just never know what's going to happen. In the last six months-year we have lost so many CFers and I'm realising now that most of them weren't expecting to go... it just took one quick unexpected infection, one course of drugs that didnt help like they usually did, or a call that never came and then BAM, things were over.
It's not cancer, we aren't going to get told, "OK, you have 3 months to live, go out and enjoy it well". We need to live every day as if it is our last because it really could be, this is true of anyone ofcourse but even more so with CF... I just need to keep that in mind as much as possible, and hope you guys will too! We have been dealt a shitty hand but it could definitely be worse, and our lives are too short and prcious to be spending time miserable or doing pointless things that make us unhappy.
Ok, well that got maybe slightly depressing but I meant it to be positive, I promise!
On a happier note, I think my dad is coming over tonight, I will have company and we will hopefully go out for some nice food. I need to get clean though!
Also I am so so grateful to those of my friends who have sent me things in the post which arrived today - Jordanna sent a book, Alice in Wonderland so that I can read it as it's on my list, Tiff sent me a lovely letter with some photos and a little "Happiness Kit" which I will post more about later! And Annie sent a cute card with some little teeny toy animals (she works in a toy shop hehe). Along with the card Megs sent me earlier in the week, these simple things have brought some sunshine to my stay, it's nice to know that when you're feeling so low and forgotten that people really are thinking of you and will make the effort to let you know.
Ok, I think I've probably bored the socks off you now so well done if you are not snoring with your head on the keyboard! Bath time for me now. So much love to you all and I hope you are well and happy xx
Friday, April 30, 2010
Inked
So today was the day!
I now have my first tattoo. Might be kinda cliche, but it's what I wanted, and kinda needed, so there we go.
Pain - a LOT worse than I expected, though worth it. I was counting on the theory that it feels like "scratching a sunburn", well it was more like he was slowly cutting my foot in half with a razor blade :O
And well to be honest there are some things I'm not so happy about with it, it's slightly wonky in one place and now that I look at it, it seems obvious that when i asked him to put the words in a different order, swapping hope and courage, he just moved the words about but didnt actually change the design so it doesnt flow as well as it should, REALLY nto happy about that! Hopefully it's not too obvious though. And as I said, I'm putting it up to life experience. I'm happy I got it (and very grateful to Jordanna for being my hand to squeeze!)...
Photo time :D
My personal favourite photo face!
End result, tattoo by James at Skin Scene, Jersey. 1hour:
Everyone, including me, seems to be getting unwell at the moment, thinking of you all!
XX
I now have my first tattoo. Might be kinda cliche, but it's what I wanted, and kinda needed, so there we go.
Pain - a LOT worse than I expected, though worth it. I was counting on the theory that it feels like "scratching a sunburn", well it was more like he was slowly cutting my foot in half with a razor blade :O
And well to be honest there are some things I'm not so happy about with it, it's slightly wonky in one place and now that I look at it, it seems obvious that when i asked him to put the words in a different order, swapping hope and courage, he just moved the words about but didnt actually change the design so it doesnt flow as well as it should, REALLY nto happy about that! Hopefully it's not too obvious though. And as I said, I'm putting it up to life experience. I'm happy I got it (and very grateful to Jordanna for being my hand to squeeze!)...
Photo time :D
My personal favourite photo face!
End result, tattoo by James at Skin Scene, Jersey. 1hour:
Everyone, including me, seems to be getting unwell at the moment, thinking of you all!
XX
Monday, April 26, 2010
Sunday Driving
So yesterday I had my first driving lesson since about a year ago. And it went... ok?
Well first of all the woman was late, but only by 5 minutes. But when I got in her car it felt like it was going to be great to drive! It's a Fiat 500, pretty much brand-new...perfect for me in that the pedals and steering were BEAUtifully smooth and light, and the gear-stick is raised almost to where the radio controls are on most cars, rather than down by the handbrake, which I found really made things easier... I had been having trouble changing gear before I think just because of my small size and that I'm not "strong" or fit in the first place, and the position my arm had to be into change gears made the muscle feel very weak! So it was nice to have that change in the Fiat 500.
Unfortunately from there my pixie proportions of 4 foot 11 inches tall meant that with the highest dashboard I've ever encountered, I couldnt really see the road! If i strained to strech I could just about see where I was going, but I was secretly using the side mirrors to drive for most of the lesson (shh!) - like checking my position on the road and stuff. The dash was pretty high anyway but along with a high steering wheel and a "hump" right in front of my face in the dash which housed all the speedos etc it became a problem.
Got to remember to take a cushion to sit on next time - or a booster seat! Haha :)
I do think I will try one more lesson with this lady, but she was kind of annoying! At the start of the lesson she insisted on explaining the complete basics to me, even though I explained I have been driving for a year and a half, but I can kind of understand that, I could have been lying I suppose! But once we FINALLY got going she spent probably 95% of the lesson - no exaggeration here - with her hand on the wheel, not guiding it or anything just with it sitting there? And don't forget this is after she has drummed into me that my hands must never leave the "ten and two o clock positions"... Did she expect me to leave my hand under hers, or rest mine on top?! So it was basically a one-handed hour of driving. This driving was also never fast than 20miles an hour as whenever the speedometer crept over the 20 mark she would say all calmly-but-scarily: "and eeeaaase off a little, eeaase off, thats it, eaase off"...it got really infuriating! I know it was my first lesson with her and the island limit is 35mph, but jeeze! I'm sure I'm not that bad a driver and it would have been obvious that I was experienced. As I explained to her, the only reason I need the lessons is to go over reversing and parking as I have never covered that.
Oh! And I only just remembered this but there was a very dodgy incident with a narrow lane, two cyclists (clearly worse for wear after a boozy Sunday lunch) and a family of walkers, plus two cars coming from the opposite direction... She made me try to get through when CLEARLY it was dangerous and never going to happen! I ended up stuck with a kid on one side, car on the other, family of kid behind and cyclist in front, all looking at me very angrily!!
Deary me. But for some reson I have arranged to meet her next Sunday for another lesson?! WTF? She was really sweet though and I didnt want to offend her. And the car was so easy to drive, discounting the height issue!
Should I keep next Sunday's appointment? Or maybe I should ring and use the height problem as an excuse to cancel, try to find someone else? On looking at it when written down it seems like a no-brainer, lol.
Well first of all the woman was late, but only by 5 minutes. But when I got in her car it felt like it was going to be great to drive! It's a Fiat 500, pretty much brand-new...perfect for me in that the pedals and steering were BEAUtifully smooth and light, and the gear-stick is raised almost to where the radio controls are on most cars, rather than down by the handbrake, which I found really made things easier... I had been having trouble changing gear before I think just because of my small size and that I'm not "strong" or fit in the first place, and the position my arm had to be into change gears made the muscle feel very weak! So it was nice to have that change in the Fiat 500.
Unfortunately from there my pixie proportions of 4 foot 11 inches tall meant that with the highest dashboard I've ever encountered, I couldnt really see the road! If i strained to strech I could just about see where I was going, but I was secretly using the side mirrors to drive for most of the lesson (shh!) - like checking my position on the road and stuff. The dash was pretty high anyway but along with a high steering wheel and a "hump" right in front of my face in the dash which housed all the speedos etc it became a problem.
Got to remember to take a cushion to sit on next time - or a booster seat! Haha :)
I do think I will try one more lesson with this lady, but she was kind of annoying! At the start of the lesson she insisted on explaining the complete basics to me, even though I explained I have been driving for a year and a half, but I can kind of understand that, I could have been lying I suppose! But once we FINALLY got going she spent probably 95% of the lesson - no exaggeration here - with her hand on the wheel, not guiding it or anything just with it sitting there? And don't forget this is after she has drummed into me that my hands must never leave the "ten and two o clock positions"... Did she expect me to leave my hand under hers, or rest mine on top?! So it was basically a one-handed hour of driving. This driving was also never fast than 20miles an hour as whenever the speedometer crept over the 20 mark she would say all calmly-but-scarily: "and eeeaaase off a little, eeaase off, thats it, eaase off"...it got really infuriating! I know it was my first lesson with her and the island limit is 35mph, but jeeze! I'm sure I'm not that bad a driver and it would have been obvious that I was experienced. As I explained to her, the only reason I need the lessons is to go over reversing and parking as I have never covered that.
Oh! And I only just remembered this but there was a very dodgy incident with a narrow lane, two cyclists (clearly worse for wear after a boozy Sunday lunch) and a family of walkers, plus two cars coming from the opposite direction... She made me try to get through when CLEARLY it was dangerous and never going to happen! I ended up stuck with a kid on one side, car on the other, family of kid behind and cyclist in front, all looking at me very angrily!!
Deary me. But for some reson I have arranged to meet her next Sunday for another lesson?! WTF? She was really sweet though and I didnt want to offend her. And the car was so easy to drive, discounting the height issue!
Should I keep next Sunday's appointment? Or maybe I should ring and use the height problem as an excuse to cancel, try to find someone else? On looking at it when written down it seems like a no-brainer, lol.
Friday, April 23, 2010
Some Pictures and Things...
So... things still aren't great.
But I've been very busy this week! Unfortunately not very social, still a hermit!
But Ive been to the dentist - and dear me was it horrific! I was meant to be getting the toothypegs whitened! As they are something I am really concious of like my bloated belly. But I ended up have instead: FIFTEEN (15!!) injections in my poor gummies!! 4 fillings and 5 enamel replacements! Damn you fruit addiction, you wreak havoc on my enamel :(
But at least that's all sorted now.
After the dentist - and a good hour of walking around town, covering my mouth if i had to speak to anyone since i noticed i looked like i had super-gravity on my face - it was time for the hairdressers and I went to a different place than normal as they had an offer of free colour with any cut and blowdry, obviously with a junior but it still went pretty well! I have gone a few shades darker, not quite to the black i used to have but a dark brown... The only thing was the girl was really messy and my hairline and ears are very stained! :( And also, I'm pretty sure once it fades (i only got a semi-permanent tint this time) its going to be red-ish which i asked the, to make sure it wouldnt, but it does seem to have red tones in.
Oh, and about 5 minutes into the appointment the girl asked me how old i was, and literally spent the entire time after that exclaiming "Thats crazy! you look about 13, 14 at most! I dont believe you! You are NOT 18! you know i would still colour your hair if you were under 18, you dont have to lie!" etcetc... I was imagining giving her a good smack! I dont mind a quick word of surprise but this was literally a constant hour and a half of saying i looked like I was in year 8 or 9, I got so pissed off. And the thing was she was only 19 herself, surely she would have realised that I probably wouldnt be comfortable with it? In the end i said a few times "ohh, yeah, i hate it, people always go on about it..." quite pointedly, but she still didnt get the hint. Grr!
So here is the new look... Plus my i <3 zombies tshirt :D love it
And... next change...
Ouch! I *hope* this kinda suits me. But it's what i wanted, well actually I wanted my lip done and have since I was 13 (stupidly did it myself at 15 only to have mother force it out a day later), but my teeth are such a mess already i dont want to risk them being damaged at all more! So my little (well, quite big lol) blue sparkly is now settling into my nose. It freakin hurt for an hour afterwards but now i cant feel a thing!! :D though the hook inside is HEE-UGE and so noticeable from the slightest angle! But 6-8 weeks and i can get something a little more discreet :)
Oh, and a picture or two from the last week or two. Enjoy XX
^ My new owl doorstop :D i love owls! Isn't he cute? He needs a name though. Suggestions on a postcard please...
a genuine Jersey cow <3
But I've been very busy this week! Unfortunately not very social, still a hermit!
But Ive been to the dentist - and dear me was it horrific! I was meant to be getting the toothypegs whitened! As they are something I am really concious of like my bloated belly. But I ended up have instead: FIFTEEN (15!!) injections in my poor gummies!! 4 fillings and 5 enamel replacements! Damn you fruit addiction, you wreak havoc on my enamel :(
But at least that's all sorted now.
After the dentist - and a good hour of walking around town, covering my mouth if i had to speak to anyone since i noticed i looked like i had super-gravity on my face - it was time for the hairdressers and I went to a different place than normal as they had an offer of free colour with any cut and blowdry, obviously with a junior but it still went pretty well! I have gone a few shades darker, not quite to the black i used to have but a dark brown... The only thing was the girl was really messy and my hairline and ears are very stained! :( And also, I'm pretty sure once it fades (i only got a semi-permanent tint this time) its going to be red-ish which i asked the, to make sure it wouldnt, but it does seem to have red tones in.
Oh, and about 5 minutes into the appointment the girl asked me how old i was, and literally spent the entire time after that exclaiming "Thats crazy! you look about 13, 14 at most! I dont believe you! You are NOT 18! you know i would still colour your hair if you were under 18, you dont have to lie!" etcetc... I was imagining giving her a good smack! I dont mind a quick word of surprise but this was literally a constant hour and a half of saying i looked like I was in year 8 or 9, I got so pissed off. And the thing was she was only 19 herself, surely she would have realised that I probably wouldnt be comfortable with it? In the end i said a few times "ohh, yeah, i hate it, people always go on about it..." quite pointedly, but she still didnt get the hint. Grr!
So here is the new look... Plus my i <3 zombies tshirt :D love it
And... next change...
Ouch! I *hope* this kinda suits me. But it's what i wanted, well actually I wanted my lip done and have since I was 13 (stupidly did it myself at 15 only to have mother force it out a day later), but my teeth are such a mess already i dont want to risk them being damaged at all more! So my little (well, quite big lol) blue sparkly is now settling into my nose. It freakin hurt for an hour afterwards but now i cant feel a thing!! :D though the hook inside is HEE-UGE and so noticeable from the slightest angle! But 6-8 weeks and i can get something a little more discreet :)
Oh, and a picture or two from the last week or two. Enjoy XX
^ My new owl doorstop :D i love owls! Isn't he cute? He needs a name though. Suggestions on a postcard please...
a genuine Jersey cow <3
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