Frustrated is a bit of an understatement.
Yesterday was a bad day. I don't remember the last time my chest felt so crap. It was like someone had poured glue down into my right lung, I just couldn't get a deep breath in it was so tight. I did everything I could to try and shift the stuff that was stuck - nebs, inhalers, physio, fluids, taking the dog a walk - all of which worked a bit eventually but it wasn't straight forward. Literally 1 minute into my walk with Fionn I started having haemoptysis and coughed so much that I vomited. Nice. The rest of the day I had super gross sounding cough and continued to have blood, in varying amounts, til about 5/6pm (after it starting at lunch time).
I'm annoyed cause it's a big change for me but I feel like I'm the only person taking it seriously. The fact it's "normal" in CF patients doesn't matter to me. I want to know why it's happening and I want it to stop! I don't want to become part of the group of CF patients for whom coughing up blood becomes a regular and normal thing. It's not normal, end of.
I'm also frustrated because it puts me off doing the things I love. I don't want to sing for fear of setting it off again. I don't want to go for a walk/run because it'll probably start it again too. I know I need to do these things to keep my chest in working order, but it seems counter productive if it's going to cause bleeding, after which I'm not supposed to do much physio, and certainly not allowed to use my PEP, and nebs aren't advisable either. Point?
On another note, it's less than 3 weeks til the Arran Music Festival. I'm singing, playing piano solo, accompanying singers, and just generally running about like a headless chicken for a night! I'm hoping it'll be a fruitful first festival for me and maybe result in some more work. Fingers crossed.
So, I'm off to get dressed and take Fionn a walk before going a rehearsal for the festival and taking a few lessons later.
Monday, 4 March 2013
Thursday, 21 February 2013
bye bye IVs!
IVs finished on Tuesday, yay, and got my line out today! My lung function was back up to what it was over Christmas which is good news, and almost up to my best reading in a year. Nobody could shed any more light on the bleeding, as nothing has really changed apart from the return of staphylococcus. After not growing it for around a year and stopping flucloxacillin in August (I thought I stopped it in October, but nevermind!) I have had 2 samples with a heavy growth (December and pre-IV). Sake. Dr was fairly insistent that I don't start back on fluclox though because of the bother I have with thrush, so we're just hoping at the moment that I'll manage without it.
I was really impressed with my numbers today because I've had some pain and a bit of a cold over the last few days but must not be on my chest this time.
I even managed to gain 0.7kg which is unheard of on IVs. I always seem to lose weight on them but I didn't have so much nausea this time so managed to eat like a complete pig and James kept buying me jelly babies and cakes, as did mum!
Next week we are hoping to have our house valued. I'm dreading it because our ability to buy it is based purely on how much they say it's worth :/
Work is going reasonably well. Feel a bit bored again and can't wait for the kids' exams to be over cause I'm sick listening to the pieces (regardless of how well they play them)! I'm anticipating a distinction and a merit for my grade 1s, although if the 2nd was to get distinction too I'd be over the moon! Only other exam this time round is a prep test, which doesn't get graded :)
BTW, stuff getting an epidural put in! I'm watching a midwifery program, apologies, and that looked painful.
I'm feeling pretty good at the moment, emotionally, and I am seriously enjoying seeing some sunshine :D
I was really impressed with my numbers today because I've had some pain and a bit of a cold over the last few days but must not be on my chest this time.
I even managed to gain 0.7kg which is unheard of on IVs. I always seem to lose weight on them but I didn't have so much nausea this time so managed to eat like a complete pig and James kept buying me jelly babies and cakes, as did mum!
Next week we are hoping to have our house valued. I'm dreading it because our ability to buy it is based purely on how much they say it's worth :/
Work is going reasonably well. Feel a bit bored again and can't wait for the kids' exams to be over cause I'm sick listening to the pieces (regardless of how well they play them)! I'm anticipating a distinction and a merit for my grade 1s, although if the 2nd was to get distinction too I'd be over the moon! Only other exam this time round is a prep test, which doesn't get graded :)
BTW, stuff getting an epidural put in! I'm watching a midwifery program, apologies, and that looked painful.
I'm feeling pretty good at the moment, emotionally, and I am seriously enjoying seeing some sunshine :D
Tuesday, 12 February 2013
Lots on my mind - bare with me
Sorry for this, it's going to be boring, but I feel I need to write it down because it's taking up too much mind space.
I'm sure you can imagine with having had a few episodes of haemoptysis (coughing up blood) recently it's been on my mind a lot. For the first few days this time it scared me - not because it hasn't happened before but because it was more than I've experienced - but now I'm less bothered. For 3 days I hardly slept, thinking about it constantly, worrying it was going to happen again and just generally freaking myself out. Wondering what it means for my health.
The fact is I still don't really know what it means for my health. All I know is it's just "one of those things" that sometimes happens in the lungs of people with CF and that I haven't had enough blood to warrant an embolisation (woop! :/ )
Anyway, I thought it had come from my right lung because I had some pain/tightness in there, but during a physio session in hospital I shifted old blood from left side, swiftly followed by more fresh blood. That confirmed for me it's my crappier left lung. In particular, the crappiest bit of my crappier lung! Thinking back to the 2 weeks ago when this all started, I remember feeling a pop at the bottom of my left lung when I went to bed during the day, followed by bit of a gurgle. It made me cough but I didn't think much more of it because sometimes things pop and gurgle and that's that.
What also came back to me was the blood from when I had the nasty cold, that I thought was sinus blood, but now I'm convinced it wasn't. I think I had a small lung bleed during the night while asleep, but there was so much gunk in my chest blocking it from rising to my mouth that it just sat there. I know this now because of the amount of crap that came up before the blood! Duh!
Anyway, tomorrow is the start of my 2nd week of IVs. I did feel a bit better before starting them after a week on oral septrin, but I decided just to stick to the plan of having IVs anyway. From Thursday til yesterday I thought I'd made a mistake because I wasn't shifting a single thing from my chest. I was just getting tight as heck and wheezy during physio, barely even coughing at all. I don't like to take any antibiotics unless I need them so I was getting annoyed with myself. This morning however was like a mass exodus from the lungs so maybe it wasn't such a bad idea after all, just needed time.
I'm sure you can imagine with having had a few episodes of haemoptysis (coughing up blood) recently it's been on my mind a lot. For the first few days this time it scared me - not because it hasn't happened before but because it was more than I've experienced - but now I'm less bothered. For 3 days I hardly slept, thinking about it constantly, worrying it was going to happen again and just generally freaking myself out. Wondering what it means for my health.
The fact is I still don't really know what it means for my health. All I know is it's just "one of those things" that sometimes happens in the lungs of people with CF and that I haven't had enough blood to warrant an embolisation (woop! :/ )
Anyway, I thought it had come from my right lung because I had some pain/tightness in there, but during a physio session in hospital I shifted old blood from left side, swiftly followed by more fresh blood. That confirmed for me it's my crappier left lung. In particular, the crappiest bit of my crappier lung! Thinking back to the 2 weeks ago when this all started, I remember feeling a pop at the bottom of my left lung when I went to bed during the day, followed by bit of a gurgle. It made me cough but I didn't think much more of it because sometimes things pop and gurgle and that's that.
What also came back to me was the blood from when I had the nasty cold, that I thought was sinus blood, but now I'm convinced it wasn't. I think I had a small lung bleed during the night while asleep, but there was so much gunk in my chest blocking it from rising to my mouth that it just sat there. I know this now because of the amount of crap that came up before the blood! Duh!
Anyway, tomorrow is the start of my 2nd week of IVs. I did feel a bit better before starting them after a week on oral septrin, but I decided just to stick to the plan of having IVs anyway. From Thursday til yesterday I thought I'd made a mistake because I wasn't shifting a single thing from my chest. I was just getting tight as heck and wheezy during physio, barely even coughing at all. I don't like to take any antibiotics unless I need them so I was getting annoyed with myself. This morning however was like a mass exodus from the lungs so maybe it wasn't such a bad idea after all, just needed time.
Friday, 1 February 2013
running
http://vimeo.com/58668299
I'm sorry this video is on its side, stupid phone couldn't rotate it and neither can any of the video programs on my laptop. Anybody got any ideas? Also, I tried to embed it but it was having none of it. Technology does not like me at the moment.
Ok, so that's a quick update that I made on Sunday 27th Jan. On Monday I felt even worse than I did on Sunday and took myself back to bed, only to cough up pure blood after 45 minutes, forcing me to cancel all but one of my lessons cause I didn't want a repeat performance infront of anybody, especially kids! Tuesdays lessons were also cancelled as I trailed my butt the 3 hours to clinic (living on Arran has a lot to answer for!! It only used to take me half hour) to be asked to go back next week to be admitted to start home IVs. I can't go home straight away because of levels and I ain't traipsing back and forward by boat all week.
So, I made it 12 days between clinic appointments lol. In that time my lung function dropped about 10% (not too shabby), my sats dipped a little but the biggest kicker was losing 2.3kg in under 2 weeks. What?! To some people it might not be much but when you're only 4ft 10 it makes you look quite skinny. My mum was so funny "What do you mean you've lost 2.3kg? How is that even possible without trying? They must've measured you wrong!" I think she's forgotten what CF is lol. If I lose another kg I'm right back to where I was in April, which is skinniest I've been since I was 15. Ah well.
So I've not done any running this week. My Dr asked if I think I'm doing too much, and at the time I said no, because I don't think I am, but then that got me thinking about what I actually do. I walk the dog 5 days out of 7, usually for an hour minimum. I sing in a choir and smaller singing group, as well as sing in my own time. I work for myself, which involves long Friday and Saturday every week as I drag my ass 3 hours over to mum and dads on a Friday, and then back on a Saturday, with 15 piano lessons in between lol. There's housework to do and last few weeks we've been stressed with so much other stuff happening. I don't think it's too much but maybe my body thinks otherwise...it would certainly explain why I'm so exhausted.
Hey ho, onwards and upwards as they say! Hope all you lovelies are well.
PS I have good news, but I want to wait til it's absolutely finalised before I share, so keep an eye out!
I'm sorry this video is on its side, stupid phone couldn't rotate it and neither can any of the video programs on my laptop. Anybody got any ideas? Also, I tried to embed it but it was having none of it. Technology does not like me at the moment.
Ok, so that's a quick update that I made on Sunday 27th Jan. On Monday I felt even worse than I did on Sunday and took myself back to bed, only to cough up pure blood after 45 minutes, forcing me to cancel all but one of my lessons cause I didn't want a repeat performance infront of anybody, especially kids! Tuesdays lessons were also cancelled as I trailed my butt the 3 hours to clinic (living on Arran has a lot to answer for!! It only used to take me half hour) to be asked to go back next week to be admitted to start home IVs. I can't go home straight away because of levels and I ain't traipsing back and forward by boat all week.
So, I made it 12 days between clinic appointments lol. In that time my lung function dropped about 10% (not too shabby), my sats dipped a little but the biggest kicker was losing 2.3kg in under 2 weeks. What?! To some people it might not be much but when you're only 4ft 10 it makes you look quite skinny. My mum was so funny "What do you mean you've lost 2.3kg? How is that even possible without trying? They must've measured you wrong!" I think she's forgotten what CF is lol. If I lose another kg I'm right back to where I was in April, which is skinniest I've been since I was 15. Ah well.
So I've not done any running this week. My Dr asked if I think I'm doing too much, and at the time I said no, because I don't think I am, but then that got me thinking about what I actually do. I walk the dog 5 days out of 7, usually for an hour minimum. I sing in a choir and smaller singing group, as well as sing in my own time. I work for myself, which involves long Friday and Saturday every week as I drag my ass 3 hours over to mum and dads on a Friday, and then back on a Saturday, with 15 piano lessons in between lol. There's housework to do and last few weeks we've been stressed with so much other stuff happening. I don't think it's too much but maybe my body thinks otherwise...it would certainly explain why I'm so exhausted.
Hey ho, onwards and upwards as they say! Hope all you lovelies are well.
PS I have good news, but I want to wait til it's absolutely finalised before I share, so keep an eye out!
Thursday, 24 January 2013
My Lagan Love
So, yesterday I joined a ladies singing group called Vivace. I think there are 8 ladies who meet every week to sing with the aim to performing in festivals and at weddings etc. I've recorded myself singing the tune to My Lagan Love which is an Irish folk song. I'm slightly embarrassed about posting a link to it on here as it is terrible quality and not my best singing either (just can't get the first few words of each verse to sound nice!!!) but hey, I need to get over myself and stop being so embarrassed to perform, and you're all a nice bunch so seems a decent place to start. There were slightly better recordings but I had horrible throat clearing and coughing so they're no good! Damn CF has been ruining my performances all my life lol.
http://picosong.com/3GCQ
I also recorded myself singing and playing Brahms "Der Tod, das ist die kuhle nacht" but it's even worse quality and it goes very high so makes your speakers do that nasty buzzing that happens when a track hasn't been edited properly, or the performer has been too close to the mic (both of which are true in my case because the only place to put the laptop is right next to the piano and I can't remember how to work editing software....naff)
Please send thoughts to my family, and prayers if you're that way inclined. My step-cousin has been missing since 2am on Friday. Mountain Rescue, divers, police, everyone is looking for him and so far no luck other than his wallet. It's a terrible time but people have been so supportive to my Uncle Malcolm and David's mum Donna. It really is awful though, he's only 18 and just started studying at Stirling Uni in October :(
Friday, 18 January 2013
busy doing nothing?
Yesterday was clinic day. I hadn't been feeling my best the last few weeks after the cold from hell, with horrible chest tightness and coughing up lots of icky crap, but ramping up the exercise has obviously done the trick because lung function was only down 1%! yay! It was a very boring clinic actually, but that's usually a good sign that things are fairly stable. I got a new drug for my tummy called prucalopride (or resolor) which is a drug for adult women with chronic constipation who don't respond well enough to laxative therapy. Not a CF drug really but my friend was prescribed it by a gastro doc and the cf team jumped on it when they found out how well she was doing with it. I'm not gonna lie though, the headache is immense, and the dizziness, slightly numb mouth and nausea are pretty yuck so it better work!!
January is definitely the month for trying to get life back on track. This morning I have been on the phone to the bank setting up a payment plan to start repaying some debt. I've also filed a tax return and have nothing to pay (thank god, cause don't know where the money was coming from!) As I said I've ramped up the exercise, given myself a good kick in the butt and made myself get on with it, which is hard when all you want to do is stay in bed. I decided to run another 10k so started training for it last week (it's in 16 weeks, eek!) and it's been tough. Arran is not flat, it just isn't, everywhere you turn there's another hill, so running there is quite challenging, but as I said it's done my lungs the world of good because the more I clear from my chest the less tight it feels and the less I cough the rest of the day. Fionn has been running with me and trying to kill me in the process! The first day out he thought it was a game and kept running at me and jumping right up at me which nearly sent me flying every time, but now he just puts things down ahead of me and picks them up again just before I land on top of him. He obviously likes the thrill of nearly being stood on...weirdo.
We are still trying to find a way to buy the house we are living in, which is causing no end of stress, but think we might be getting somewhere after I had a meeting with a mortgage advisor yesterday and should start reapplying on Monday. All it means though is that I need to become a domestic goddess and get the house tidied for a survey...I am no domestic goddess, no matter how much I try and kid on I am...our house is a tip (apart from my teaching room, cause I'd die if people thought I was as messy as I actually am lol) so I'm gonna need to get cracking on that.
Next week I am judging Arran Young Musician/Singer of the Year....kill me now lol, and in March the Arran Music Festival is happening. I have a young singing pupil and a piano pupil both wanting to enter competitions taking place during the festival and James is making me enter (although I hope to enter the only non-competitive class). I have had some interest from people wanting lessons just so they can enter the festival competitions too, which is a bit weird but fair enough I suppose. My Saturday teaching sessions are starting to cause bother for pupils. They all want the early slots so they have the rest of the day but I can only teach 1 person at a time and the morning sessions are all gone! I think I'll be losing 2 in the next few weeks probably because they come from 1-2 and having tried it for 6 months are not happy with staying at that time. I can't take them another day unless they want to get the ferry to Arran, and actually to be honest I think the young boy wants to stop his lessons anyway. He keeps telling me how much he hates coming and how he wants to be at home lol. I just keep telling him I feel exactly the same and if he doesn't sit down and get on with it I'm gonna cancel his lessons for him. We definitely have a love/hate relationship, but it's quite entertaining.
Anyway, that's all for now. Hope you are all fine and dandy :)
January is definitely the month for trying to get life back on track. This morning I have been on the phone to the bank setting up a payment plan to start repaying some debt. I've also filed a tax return and have nothing to pay (thank god, cause don't know where the money was coming from!) As I said I've ramped up the exercise, given myself a good kick in the butt and made myself get on with it, which is hard when all you want to do is stay in bed. I decided to run another 10k so started training for it last week (it's in 16 weeks, eek!) and it's been tough. Arran is not flat, it just isn't, everywhere you turn there's another hill, so running there is quite challenging, but as I said it's done my lungs the world of good because the more I clear from my chest the less tight it feels and the less I cough the rest of the day. Fionn has been running with me and trying to kill me in the process! The first day out he thought it was a game and kept running at me and jumping right up at me which nearly sent me flying every time, but now he just puts things down ahead of me and picks them up again just before I land on top of him. He obviously likes the thrill of nearly being stood on...weirdo.
We are still trying to find a way to buy the house we are living in, which is causing no end of stress, but think we might be getting somewhere after I had a meeting with a mortgage advisor yesterday and should start reapplying on Monday. All it means though is that I need to become a domestic goddess and get the house tidied for a survey...I am no domestic goddess, no matter how much I try and kid on I am...our house is a tip (apart from my teaching room, cause I'd die if people thought I was as messy as I actually am lol) so I'm gonna need to get cracking on that.
Next week I am judging Arran Young Musician/Singer of the Year....kill me now lol, and in March the Arran Music Festival is happening. I have a young singing pupil and a piano pupil both wanting to enter competitions taking place during the festival and James is making me enter (although I hope to enter the only non-competitive class). I have had some interest from people wanting lessons just so they can enter the festival competitions too, which is a bit weird but fair enough I suppose. My Saturday teaching sessions are starting to cause bother for pupils. They all want the early slots so they have the rest of the day but I can only teach 1 person at a time and the morning sessions are all gone! I think I'll be losing 2 in the next few weeks probably because they come from 1-2 and having tried it for 6 months are not happy with staying at that time. I can't take them another day unless they want to get the ferry to Arran, and actually to be honest I think the young boy wants to stop his lessons anyway. He keeps telling me how much he hates coming and how he wants to be at home lol. I just keep telling him I feel exactly the same and if he doesn't sit down and get on with it I'm gonna cancel his lessons for him. We definitely have a love/hate relationship, but it's quite entertaining.
Anyway, that's all for now. Hope you are all fine and dandy :)
Monday, 31 December 2012
2012
2012 has, like most years, been a mixed bag. It has been amazing at times, but rubbish at others. I've been ill, people around me have been ill, even died from illness, but at the other end, I got married, more or less stabilised my work and turned my health around through hard work and refusal to let it stay bad.
There are people no longer with us who I will truly miss forever. They were lifelines when things were bad, offering support and comfort (from a distance, seen as we couldn't mix!) and just being there to listen to me moan and I hope I was able to do the same for them.
James and I had a fantastic wedding and really loved our honeymoon (take me back!) followed by a house move which wasn't so much fun and new work loads etc. We got a new rabbit after my wee sausage Coco passed away :( We also got our first dog, who is hilarious and just loves his wee life.
As for the end of 2012, it's been good. Christmas was lovely. We spent it with family and just chilled out. James and I have both been ill though. James woke up with a heavy cold on Christmas eve, followed by me on Christmas day. Mine is on my chest, with viral bronchitis, and I can't smell a thing! Boo! I have to go back to hospital 17th Jan for my normal clinic so it better have cleared up with the extra steroid inhaler doses and antibiotics to keep everything else at bay. My sinuses have been rubbish with it, really painful and bleeding while I've been asleep, leading to me coughing up a whole load of old blood when I get upright again. Yum :/
My mum has been coughing since October so my sister and I have been badgering her to go to the doctor for tests. Every excuse under the sun from her, but she better go because it's not just a wee pathetic cough, she says she can't get a breath in and ends up barking and gasping. Not cool, mum, get it sorted.
Today is new years eve. I'm supposed to be in bed still so I can last the night (cannot be bothered, but hey ho) but my stupid stomach woke me up and I caught Fionn chewing my mums new fat face scarf. Now I need to buy a replacement. Great.
I hope you all had a great Christmas and have a good start to 2013 when it comes. I doubt this post makes a whole lot of sense, but thought I'd just pop by to let anyone reading know that I'm still about and still just doing what I do.
HAPPY NEW YEAR when it comes :)
There are people no longer with us who I will truly miss forever. They were lifelines when things were bad, offering support and comfort (from a distance, seen as we couldn't mix!) and just being there to listen to me moan and I hope I was able to do the same for them.
James and I had a fantastic wedding and really loved our honeymoon (take me back!) followed by a house move which wasn't so much fun and new work loads etc. We got a new rabbit after my wee sausage Coco passed away :( We also got our first dog, who is hilarious and just loves his wee life.
As for the end of 2012, it's been good. Christmas was lovely. We spent it with family and just chilled out. James and I have both been ill though. James woke up with a heavy cold on Christmas eve, followed by me on Christmas day. Mine is on my chest, with viral bronchitis, and I can't smell a thing! Boo! I have to go back to hospital 17th Jan for my normal clinic so it better have cleared up with the extra steroid inhaler doses and antibiotics to keep everything else at bay. My sinuses have been rubbish with it, really painful and bleeding while I've been asleep, leading to me coughing up a whole load of old blood when I get upright again. Yum :/
My mum has been coughing since October so my sister and I have been badgering her to go to the doctor for tests. Every excuse under the sun from her, but she better go because it's not just a wee pathetic cough, she says she can't get a breath in and ends up barking and gasping. Not cool, mum, get it sorted.
Today is new years eve. I'm supposed to be in bed still so I can last the night (cannot be bothered, but hey ho) but my stupid stomach woke me up and I caught Fionn chewing my mums new fat face scarf. Now I need to buy a replacement. Great.
I hope you all had a great Christmas and have a good start to 2013 when it comes. I doubt this post makes a whole lot of sense, but thought I'd just pop by to let anyone reading know that I'm still about and still just doing what I do.
HAPPY NEW YEAR when it comes :)
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