Friday, 27 August 2010
back to band!!
I received a facebook message at the beginning of the week from my old trumpet teacher asking me to join a local wind band that he started last year...so I went. I hadn't touched my trumpet in 5 years and was a bit concerned about how my chest would react, but it was fine, my lips died long before my chest lol. I have to say though that I'm glad I had the IVs before hand though cause thinking about how I was I know it would've been a lot harder on me.
We are playing at both the National Concert Band Festival and the Scottish Concert Band Festival, in November and December, and big Friel (or Alan, as he shall be known from now on...we used to call him Friel instead...Alan Friel, you know how it goes...) has decided that we will play 2 completely different programmes...joy!!! My sister joined as well. She plays French Horn and just left school so isn't nearly as out of practise as me, but I think I did ok considering.
So far we have been given 5 pieces, including a medley of songs from Wicked! SWEET! There's not much point in mentioning any other pieces as I don't know them yet and I doubt anybody else does either lol...Schostakovitch and Eric Whitacre etc, nah. Although I will say that our only slow piece so far is an absolute stunner :)
That's me, done, had my ramble about band, feel like I'm 15 again. All I need now is a residential weekend and a competition and I'll be right back there! Although I'll miss out the vodka this time cause a trip to the headteachers office is not on the cards for me now...haha, good times! Not the getting caught part, but the part before that ;)
We are playing at both the National Concert Band Festival and the Scottish Concert Band Festival, in November and December, and big Friel (or Alan, as he shall be known from now on...we used to call him Friel instead...Alan Friel, you know how it goes...) has decided that we will play 2 completely different programmes...joy!!! My sister joined as well. She plays French Horn and just left school so isn't nearly as out of practise as me, but I think I did ok considering.
So far we have been given 5 pieces, including a medley of songs from Wicked! SWEET! There's not much point in mentioning any other pieces as I don't know them yet and I doubt anybody else does either lol...Schostakovitch and Eric Whitacre etc, nah. Although I will say that our only slow piece so far is an absolute stunner :)
That's me, done, had my ramble about band, feel like I'm 15 again. All I need now is a residential weekend and a competition and I'll be right back there! Although I'll miss out the vodka this time cause a trip to the headteachers office is not on the cards for me now...haha, good times! Not the getting caught part, but the part before that ;)
Wednesday, 25 August 2010
stuff
A very original title...I'm rubbish with titles.
James and I enjoyed our wee holiday :) He enjoyed it so much that he didn't want to leave. James in his element = chopping wood all day for the fire and going long, extremely taxing walks which left me knackered and wanting to cry lol. On the plus side, I felt a bit fitter when I got home than when I left. There's not really a lot to say about the holiday other than it was quiet, partly relaxing, partly knackering, pretty and different :) We spent a day on Bute which was nice and Rothesay is a pretty town. Fudge (the dog) really enjoyed herself too, she loved the walks! She was extremely well behaved and thought she was the queen for sleeping on the couch every night...sneeky. I don't have any pics at the moment as they're on my dads computer but when I get them I shall post a few.
I'm feeling now that I would really like a Monday - Friday job. Working til 10.15pm is not good for anybody, it's far too tiring, and then coming home and not sleeping properly just makes the next day workikng til 10.15pm even harder! I would've done anything to get home at 7pm last night lol. I'm also not keen on the fact that I'm working this whole weekend while James is off and 1 of my best friends, Leeanna, is going to South Korea for a year on Monday and I will only see her briefly on Saturday night as I'm working at 7.15am on Saturday and Sunday mornings! gutted. Normally I would sense a cancellation of a shift so that we could go out properly, but I have no money from being in hospital and if I cancel then I will have even less money next month! GAH!
My chest is feeling a lot better. I think, even though in terms of spirometry figures there wasn't much change, that the change in how my chest felt had been so gradual that I hardly noticed until the pain started. I find my left lung is still more productive than the right and it still looks pretty infected but who knows. That could just be the staph making it look that way. I suppose I'll find out when I'm next putting a sample in.
Hope everyone is keeping as well as can be :) x
James and I enjoyed our wee holiday :) He enjoyed it so much that he didn't want to leave. James in his element = chopping wood all day for the fire and going long, extremely taxing walks which left me knackered and wanting to cry lol. On the plus side, I felt a bit fitter when I got home than when I left. There's not really a lot to say about the holiday other than it was quiet, partly relaxing, partly knackering, pretty and different :) We spent a day on Bute which was nice and Rothesay is a pretty town. Fudge (the dog) really enjoyed herself too, she loved the walks! She was extremely well behaved and thought she was the queen for sleeping on the couch every night...sneeky. I don't have any pics at the moment as they're on my dads computer but when I get them I shall post a few.
I'm feeling now that I would really like a Monday - Friday job. Working til 10.15pm is not good for anybody, it's far too tiring, and then coming home and not sleeping properly just makes the next day workikng til 10.15pm even harder! I would've done anything to get home at 7pm last night lol. I'm also not keen on the fact that I'm working this whole weekend while James is off and 1 of my best friends, Leeanna, is going to South Korea for a year on Monday and I will only see her briefly on Saturday night as I'm working at 7.15am on Saturday and Sunday mornings! gutted. Normally I would sense a cancellation of a shift so that we could go out properly, but I have no money from being in hospital and if I cancel then I will have even less money next month! GAH!
My chest is feeling a lot better. I think, even though in terms of spirometry figures there wasn't much change, that the change in how my chest felt had been so gradual that I hardly noticed until the pain started. I find my left lung is still more productive than the right and it still looks pretty infected but who knows. That could just be the staph making it look that way. I suppose I'll find out when I'm next putting a sample in.
Hope everyone is keeping as well as can be :) x
Friday, 13 August 2010
holiday time!
James and I are going away tomorrow :) We've been looking forward to it for ages and it's finally here...shame it'll be over in a flash. We're heading slightly north west to a place called Tighnabruaich, west of Dunoon, across from Bute, should be good! The cottage has no electricity so I have an inverter for the car so I can use my nebulisers lol. It'll be back to the olden times for us, heating the water using a log fire and getting light from oil lamps and candles, but it'll be fun, I'll just need to make sure I don't get too close to the fire or I'll be coughing like mad.
Yesterday is the first time I haven't wakened with a mega wheez in a while which was nice. I have been sleeping terribly and have this tickly feeling at the top of my chest...it's not quite the back of my throat, it's lower than that, makes me want to cough quite a bit but I'm putting it down to using nebs 3 times a day as that's quite new for me. I'm totally amazed by how well the h.saline is working, it's the first time in who knows how long that I've been able to physio properly cause it's not so sticky down there. Only thing I don't like is how long it takes my chest to settle again after it. I've been coughing on and off for a couple of hours after, still coughing up disgusting green junk. Ew. Oh, and my tummy STILL hasn't settled properly which is causing me greif and I might need to phone the nurses after my holiday to see what they suggest. If I stop my movicol I get blocked in less than a day, but if I take it regularly I'm ending up going the other way after a few days...I dunno what to do about it.
Anyway, boring stuff aside, I'm going on holiday!!!! It's finally sunny and warm so here's hoping it stays that way for at least a couple of days. I'm not gonna be chopping the wood so I actually don't care lol. It's my sisters birthday today and my mums on Monday, so we're having a BBQ tonight at mum and dads. I love scoring free dinners cause we're quite poor at the moment.
James got back into uni :) He's going to do PGDE English. This time next year he'll be a part qualified secondary english teacher :D go James! He'll make a fantastic teacher, he's basically always in teacher mode anyway, correcting everybody's grammer and spelling mistakes etc...nightmare.
I hope everyone is feeling well and enjoying life as much as possible. I know the CF community has had some losses this week which saddens me deeply, but I try not to let it get into my head too much cause I find it difficult to claw myself back when I get too down. I just hope the people left behind know how much we all want the best for them and how many people love them xxx
Yesterday is the first time I haven't wakened with a mega wheez in a while which was nice. I have been sleeping terribly and have this tickly feeling at the top of my chest...it's not quite the back of my throat, it's lower than that, makes me want to cough quite a bit but I'm putting it down to using nebs 3 times a day as that's quite new for me. I'm totally amazed by how well the h.saline is working, it's the first time in who knows how long that I've been able to physio properly cause it's not so sticky down there. Only thing I don't like is how long it takes my chest to settle again after it. I've been coughing on and off for a couple of hours after, still coughing up disgusting green junk. Ew. Oh, and my tummy STILL hasn't settled properly which is causing me greif and I might need to phone the nurses after my holiday to see what they suggest. If I stop my movicol I get blocked in less than a day, but if I take it regularly I'm ending up going the other way after a few days...I dunno what to do about it.
Anyway, boring stuff aside, I'm going on holiday!!!! It's finally sunny and warm so here's hoping it stays that way for at least a couple of days. I'm not gonna be chopping the wood so I actually don't care lol. It's my sisters birthday today and my mums on Monday, so we're having a BBQ tonight at mum and dads. I love scoring free dinners cause we're quite poor at the moment.
James got back into uni :) He's going to do PGDE English. This time next year he'll be a part qualified secondary english teacher :D go James! He'll make a fantastic teacher, he's basically always in teacher mode anyway, correcting everybody's grammer and spelling mistakes etc...nightmare.
I hope everyone is feeling well and enjoying life as much as possible. I know the CF community has had some losses this week which saddens me deeply, but I try not to let it get into my head too much cause I find it difficult to claw myself back when I get too down. I just hope the people left behind know how much we all want the best for them and how many people love them xxx
Thursday, 5 August 2010
IV free
All I can say is thank god for that! I have my arm back and it doesn't itch anymore from the dressings and bandage.
I finished the IVs yesterday morning and started neb colomycin and oral cipro lastnight. I can't say I'm overly pleased at having to wear sun cream because of a bloody tablet but heyho, anything is fine if it means my chest gets better. I'm pretty sure I did my nebs too close together though cause my right lung was mega rumbly and had me coughing for ages afterwards, so will need to try and come up with a system that allows more time in between. It'll be hard on work days unfortunately but maybe just give the saline a miss then. Still monitoring my blood sugars too and they seem to be a bit all over the place. I can't eat enough in the morning to keep them up before lunch and then they're high after dinner. Meh, just need to wait and see what they have to say about it, no point dwelling on it, it's fine.
Health worries aside, I had an interview this morning :) I think it went pretty well, they seemed happy with how I answered their questions and hopefully found me to be pleasant enough! I hope I get it, cause the part time rotas are worked out so that you work about 3 days a week, and the rota I was shown seemed to be maybe a back shift onto sleep over onto early, then a short shift, followed by 4 off or something. Obviously it's changable and the sleep over bit might be a nightmare but will just need to drag all my meds with me - if I get it that is.
I finished the IVs yesterday morning and started neb colomycin and oral cipro lastnight. I can't say I'm overly pleased at having to wear sun cream because of a bloody tablet but heyho, anything is fine if it means my chest gets better. I'm pretty sure I did my nebs too close together though cause my right lung was mega rumbly and had me coughing for ages afterwards, so will need to try and come up with a system that allows more time in between. It'll be hard on work days unfortunately but maybe just give the saline a miss then. Still monitoring my blood sugars too and they seem to be a bit all over the place. I can't eat enough in the morning to keep them up before lunch and then they're high after dinner. Meh, just need to wait and see what they have to say about it, no point dwelling on it, it's fine.
Health worries aside, I had an interview this morning :) I think it went pretty well, they seemed happy with how I answered their questions and hopefully found me to be pleasant enough! I hope I get it, cause the part time rotas are worked out so that you work about 3 days a week, and the rota I was shown seemed to be maybe a back shift onto sleep over onto early, then a short shift, followed by 4 off or something. Obviously it's changable and the sleep over bit might be a nightmare but will just need to drag all my meds with me - if I get it that is.
Wednesday, 28 July 2010
still in!
Well, I'm still in hospital which is marvelous. Finally got a long line in today after 3 venflons - 1 of which is still in incase the line fails, but it's in my left hand which is just inconvenient. The Drs have been taking huge advantage of the fact that I'm in and have been catching up on things that they've been meaning to do.
Tummy packed up again after 2 days off klean prep so had gastrografin on Monday which seems to be working, but I'm also taking movicol twice a day, so who knows! My OGTT showed that my glucose tolerance is impaired. Bit miffed, but nevermind!! Still waiting to speak to the diabetes team to see what they want to do. I've not been eating much and for the first time in donkeys my weight is falling, but not by a great deal.Down 1.5kg in a week though so if it keeps up I'll be getting into bother. I'm sure once I'm home and eating properly again it'll go back on as my weight's still totally healthy so we're not worried.
Hopefully I'll be out by the weekend but just need to see how the old tum holds up and the IV access. Hate feeling like a pin cushion and the bloody tobramycin is the sorest thing in the world to put through a vein...why do they use it as first choice? :(
No London at the weekend :(:(:( Dr MacG said he's definitely not letting me go which is just poopy, but I can see why he'd say that.
On a positive note, I have an interview next Thursday! Woo!! Basically the same job as I do now but with contracted hours and as a result, sick pay! I've had to cancel 2 weeks of work to come in here and that means I'm losing 2 weeks of wages that I can't afford not to have...god only knows where my rent is coming from. Even if I was on home IVs the full 2 weeks, there's no way I could go into my work with a line/venflon in...even if I had a port I wouldn't go, it's far too dangerous and risky.
Enough is enough! Hope everyone else is doing well :) x
Tummy packed up again after 2 days off klean prep so had gastrografin on Monday which seems to be working, but I'm also taking movicol twice a day, so who knows! My OGTT showed that my glucose tolerance is impaired. Bit miffed, but nevermind!! Still waiting to speak to the diabetes team to see what they want to do. I've not been eating much and for the first time in donkeys my weight is falling, but not by a great deal.Down 1.5kg in a week though so if it keeps up I'll be getting into bother. I'm sure once I'm home and eating properly again it'll go back on as my weight's still totally healthy so we're not worried.
Hopefully I'll be out by the weekend but just need to see how the old tum holds up and the IV access. Hate feeling like a pin cushion and the bloody tobramycin is the sorest thing in the world to put through a vein...why do they use it as first choice? :(
No London at the weekend :(:(:( Dr MacG said he's definitely not letting me go which is just poopy, but I can see why he'd say that.
On a positive note, I have an interview next Thursday! Woo!! Basically the same job as I do now but with contracted hours and as a result, sick pay! I've had to cancel 2 weeks of work to come in here and that means I'm losing 2 weeks of wages that I can't afford not to have...god only knows where my rent is coming from. Even if I was on home IVs the full 2 weeks, there's no way I could go into my work with a line/venflon in...even if I had a port I wouldn't go, it's far too dangerous and risky.
Enough is enough! Hope everyone else is doing well :) x
Saturday, 24 July 2010
hospital
Can't believe it! After 13 years free I have pseudo. I'm not moaning, as I am extremely grateful to have had so much time free of IVs, but it was a major shock to be told. I must've looked like I was gonna cry or fall over cause Dr McG looked a bit worried lol, but he was really nice about it, punted me off to X-ray and then up to the ward. He also gave me a bit of a row cause I didn't phone and let them know I was having chest pains, especially the kind that are worse on inhalation...woops! I just figured it was probs cause I was a blocked up and that I'd just wait a week and tell them at clinic, but he wasn't impressed. I won't be making that mistake again anyway cause the pain is originating where my lung is clogged, so at least now I know it's def lung pain and that it's cause of infection.
I'm on IV tobramycin and ceftazidime...yuck. Then I'm gonna be on 3 months of neb colomycin and an oral, which I can't remember the name of, but hopefully that'll shift it. I've had them all before so at least I know they've worked for me. I'm a bit annoyed that they'd known since May that I had grown pseudo and that nobody had contacted me and I've obviously been feeling worse in the 2 months...nevermind, I'm to blame too cause I didn't bother phoning. I've also finally been started on hypertonic saline neb. About time!! It definitely makes a difference.
I did my own IVs yesterday morning and will be doing them again from Monday so that I can hopefully be home by Thursday *fingers crossed*. I didn't expect that they'd let me do them seen as it's the first time I've had them at the adult service, but I know they're always desperate for beds and it means I can go home! I'm not impressed with the venflon cause it still hurts, but the nurse who checked it reckons it's still ok.
I also had more kleanprep, which was lovely, as always. Hate the stuff, although the taste is kinda growing on me...does that mean I get it too often? lol. I have virtually no appetite which is fun cause the smell of the food makes me wanna boke. Fortunately it tastes like the food at work, and I'm used to eating that crap, so I can manage something. I always make sure I eat anyway cause I know I have to.
Anyway, all that medical nonsense aside, I'm meant to be going to James' sister Ashley's graduation on Friday, in London. That means if I'm out I will need to take sharps etc on a plane...does anybody know the deal with that?
I can't think of anything else to say just now, it's been all go since Thursday and I'm shattered/head's up my bum!!
Hope everybody else is well :) x
I'm on IV tobramycin and ceftazidime...yuck. Then I'm gonna be on 3 months of neb colomycin and an oral, which I can't remember the name of, but hopefully that'll shift it. I've had them all before so at least I know they've worked for me. I'm a bit annoyed that they'd known since May that I had grown pseudo and that nobody had contacted me and I've obviously been feeling worse in the 2 months...nevermind, I'm to blame too cause I didn't bother phoning. I've also finally been started on hypertonic saline neb. About time!! It definitely makes a difference.
I did my own IVs yesterday morning and will be doing them again from Monday so that I can hopefully be home by Thursday *fingers crossed*. I didn't expect that they'd let me do them seen as it's the first time I've had them at the adult service, but I know they're always desperate for beds and it means I can go home! I'm not impressed with the venflon cause it still hurts, but the nurse who checked it reckons it's still ok.
I also had more kleanprep, which was lovely, as always. Hate the stuff, although the taste is kinda growing on me...does that mean I get it too often? lol. I have virtually no appetite which is fun cause the smell of the food makes me wanna boke. Fortunately it tastes like the food at work, and I'm used to eating that crap, so I can manage something. I always make sure I eat anyway cause I know I have to.
Anyway, all that medical nonsense aside, I'm meant to be going to James' sister Ashley's graduation on Friday, in London. That means if I'm out I will need to take sharps etc on a plane...does anybody know the deal with that?
I can't think of anything else to say just now, it's been all go since Thursday and I'm shattered/head's up my bum!!
Hope everybody else is well :) x
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