Right sit down and get comfy this is going to be a long one!
I'm doing a ultra long physio as I type to make up for the quite pitiful 5 mins I did last night with my eyes closed! Before I get into the happy ten years post tx stuff I just want a little moan... diabetes can you just fu*k off now please? 3 hypo's in 24 hours isn't big or clever, it's annoying and ruined my much needed sleep last night.
Anyhoo... happy, happy, happy... I'm now 10years (and one day!) post liver transplant and it feels so totally amazing to be able to say that, 10 years!
On Sunday I got a helium balloon saying thank you and wrote a letter and attached it to the balloon, big problem was that the letter acted as a weight and it wouldn't fly off. So I got a CD pen and wrote directly on the balloon, I tried to write with a gold pen first but it was practically ran out so I had to write over it which didn't look as good as I hoped but it's more about the thoughts. I let that go in the late afternoon which I did video but I can't seem to put on here right now. I've got some pics too but I can't get them on at the bottom, only the top so I will do a seperate blog for the pics!
I had a chinese lantern to set off at the party so I wrote the letter for my donor out on that and let it off in my garden at 9pm, I may post the letter on here or I may not, I haven't decided yet... anyway it went off into the sky and looked beautiful in the dark sky. A filmed it for a short while and then when I stopped me and my flatmate just watched it in silence. Just before I lit the lantern I lit a candle which I left burning til it went out which quite strangely was around 8am the next morning, roughly the time I got the call, felt quite peaceful, can't quite explain.
That night I also made rice crispie cakes... lots of rice crispie cakes, I got a bit confused and thought I didn't have enough chocolate and put 3x 150g bars in! That was enough to make 37, mostly with mini marshmellows, Yummyness. I also made 12 fairy cakes from a kit but then next day remembered 25people were meant to be coming to the party so I brought 12more and decorated them.
Didn't sleep to well that night, woke late but just about managed to get all my meds done in time for my Mum picking me up to go get the food. I had got this skin glue for sticking things to your body and stuck diamonties on my scar and took a picture and then got this on a photo cake which I decorated with the same stuff I used for my fairy and rice crispie cakes. Managed to get a parking fine in ASDA for forgetting to get a ticket even though we spent way over £5, my mum was like 'Right I don't care, I'm not letting them ruin today!'
We kinda performed mini miracles and by 4pm I just wanted to go to sleep. Also whilst performing these miricles I was forgettign to eat, so that was hypo number one, the other two were not caused by my stupidity though!
Party time was at 6.30pm but my family are always fashionably late so got there about 6.45pm not going to go through everything that happened as went on til about 11pm! But we chatted about the transplant and the past in general, we ate lots, we planted a tree and we let off two more chinese lanterns. We thought the last one was going to set fire to the next door neighbours garden as it didn't want to get in the air to start with but made it up in the end!
Last thing I did before most people went was cut the cake (was meant have candles but forgot to get them!) and me and my great-auntie wrapped it up for everyone! Everyone loved their little party bags especially my great auntie as I had put a little diabetic choc bar in there and she thought it was really thoughtful.
Most us women shed a tear or two or ten whilst writing the messages for the donor on the chiniese lanterns, my Mum's was the one that set me off. I can't remember exactly what it said but it was just really simple.
All in all a really good day, lots of reflection and celebration, love and thanks.
R.I.P. To My Donor - 1937 ~ 2000
Tuesday 30 March 2010
Friday 26 March 2010
Uber-Fast Blog
This is a really fast blog because I need sleep, just quickly eating some toast before bed!
Anyhoo I have made up some party bags for my party and in them I have put some promotional stuff from the NHSBT website in them including forms to join the register. My cousin was round earlier and saw the fluffy bugs on the side and asked about them and I said what they where for and she asked about what been on the donor register meant (yes she is blonde! LOL) so I explained and straight away she asked how she could join the organ donor and I said that there was a form in her party bag so she said she will fill it in when she gets it and can't see why people wouldn't cus what's the point when you don't need it when your dead!
So I'm really happy, one more person to be soon be signed up... still way too many to go but every extra person is another step closer to getting that 96% signed up!!
Anyhoo I have made up some party bags for my party and in them I have put some promotional stuff from the NHSBT website in them including forms to join the register. My cousin was round earlier and saw the fluffy bugs on the side and asked about them and I said what they where for and she asked about what been on the donor register meant (yes she is blonde! LOL) so I explained and straight away she asked how she could join the organ donor and I said that there was a form in her party bag so she said she will fill it in when she gets it and can't see why people wouldn't cus what's the point when you don't need it when your dead!
So I'm really happy, one more person to be soon be signed up... still way too many to go but every extra person is another step closer to getting that 96% signed up!!
Thursday 25 March 2010
Weighty Issues
Well it is official, I'm overweight! My BMI is now 25.1. I received my letter from Heartlands reviewing my clinic last week and I realised that the weight gained was actually 4kg not 3 like I wrote a few posts ago, I then weighed myself again today and my scales say I've put on a further 3.4kg in NINE DAYS!!! This is a little scary, I know my lungs are better when I have weight on and it is better to be able to gain it easily rather than struggling to but it is definitely getting to a point where my female vanity is kicking in! And a good 70% off the weight seems to be going to my belly and boobs (I don't mind the boobs bit!) and I am totally sick of people thinking I'm pregnant (it would be an immaculate conception if I was) I even have people who have known me for ages and know I have a bit of a belly who think it now. 
Excuse the sexy PJ's but this is actually my 'sucking-in-slightly' belly! I wouldn't say I'm normally a confident person but I'm not someone who cries over a few rolls, but I just feel quite down about it right now and I really hate CF for making me need to keep a body shape I hate. Ha ha, maybe I just like moaning, when I first saw my body properly in underwear when I was 47kg I cried and now I'm 66.2kg and I want to cry again, never satisfied huh?
I also know a big part of my belly problem is because of all my muscle been cut with my transplant which makes me feel quite guilty because I know I should just be grateful because transplant is amazing but I just can't help hating this 'side effect' right now!
Anyway to end I would like to ask any CF women reading a few questions, how do you feel about gaining weight? How have you felt at your heaviest or most bloated? Have you ever wanted to lose weight? Did you? Did you try and fail? Did you not bother and is so was it to try and maintain lung function? Answers on a postcard please... Or maybe in the comments would be easier :-P
I also know a big part of my belly problem is because of all my muscle been cut with my transplant which makes me feel quite guilty because I know I should just be grateful because transplant is amazing but I just can't help hating this 'side effect' right now!
Anyway to end I would like to ask any CF women reading a few questions, how do you feel about gaining weight? How have you felt at your heaviest or most bloated? Have you ever wanted to lose weight? Did you? Did you try and fail? Did you not bother and is so was it to try and maintain lung function? Answers on a postcard please... Or maybe in the comments would be easier :-P
Wednesday 17 March 2010
Brain? Where are you?
So I do still plan on doing a blog about CF, weight and vanity and all that but I'm leaving it until I have a little more brain power.
Infact I'm not quite sure why I'm writing a blog right now, I don't really have anything to say, but then I don't really have loads to say most of the time but I still manage to write long rambling blog entries!
My phone is really playing up, it keeps deleting all my text's and my call log. It's been doing this for a while now but to start with it wasn't that often and now it does it within minutes of recieving a text or call, even if I haven't read them or realised I have a missed call. One of my friends works at The Carphone Warehouse and she said I need to link my phone up to the Blackberry webpage and do a software update but this will flash wipe my phone, AKA delete everything off it! My pics, songs and videos are mostly on my memory card and whats not I can transfer onto it but all my numbers will be gone, so I have to write them all down and then put them all back in when it's done! If that doesn't work then it's going out the window!
I should know next week if I passed my first module on my learndirect, I really hope that I have, I'm really enjoying it all and not looking forward to it finishing but at the same time can't wait to have the qualifacation. I really enjoy learning and knowing stuff, I always wish I'd put more effort into college instead of dicking around but hey!
Anyway I've really ran out of brain power/things to say so I'm off. Night all!
Infact I'm not quite sure why I'm writing a blog right now, I don't really have anything to say, but then I don't really have loads to say most of the time but I still manage to write long rambling blog entries!
My phone is really playing up, it keeps deleting all my text's and my call log. It's been doing this for a while now but to start with it wasn't that often and now it does it within minutes of recieving a text or call, even if I haven't read them or realised I have a missed call. One of my friends works at The Carphone Warehouse and she said I need to link my phone up to the Blackberry webpage and do a software update but this will flash wipe my phone, AKA delete everything off it! My pics, songs and videos are mostly on my memory card and whats not I can transfer onto it but all my numbers will be gone, so I have to write them all down and then put them all back in when it's done! If that doesn't work then it's going out the window!
I should know next week if I passed my first module on my learndirect, I really hope that I have, I'm really enjoying it all and not looking forward to it finishing but at the same time can't wait to have the qualifacation. I really enjoy learning and knowing stuff, I always wish I'd put more effort into college instead of dicking around but hey!
Anyway I've really ran out of brain power/things to say so I'm off. Night all!
Monday 15 March 2010
Quick Update
Going to try and keep this pretty short and sweet as I'm rather tired and can hear the calls of my bed!
Went to clinic today and things are rather good, FEV1/FVC back up to 67/68%, SATS -98%, weight up by nearly 3kg! Would have been a perfect clinic if it wasn't for a few diabetes and a few stomach issues. I have a CGMS (Constant Glucose Monitoring System) for the next few days to try and get a better picture with the blood sugars.
After I got home I popped to ASDA which is quite close to my house and got a few bits, nothing heavy and as I was walking home some bloke offered to carry my bags for me because his misses was due soon and he wouldn't let her struggle with bags. Firstly I wasn't struggling I was adjusting my handbag cus the strap was lying over my port and was uncomfortable after just been flushed, Secondly, 2 bags! Seriously a pregnant woman can carry 2 bags! Thirdly, oh yeah, I'M NOT BLOODY PREGNANT!!! Yeah I have a belly, but nothing too huge, and it just makes me feel quite self conscious. I think if my LF wasn't correlating so well with my weight I would defiantly be dieting, I am planning to start doing sit ups once my CGMS is out though, I wasn't really loving this weight gain much, my clothes are quite tight and this has made me hate it more. Anyway I'm hardly keeping my eyes open here so I'm going to go bed but I may write more about gaining weight/female perceptions of weight gain/LF's and all that!
Went to clinic today and things are rather good, FEV1/FVC back up to 67/68%, SATS -98%, weight up by nearly 3kg! Would have been a perfect clinic if it wasn't for a few diabetes and a few stomach issues. I have a CGMS (Constant Glucose Monitoring System) for the next few days to try and get a better picture with the blood sugars.
After I got home I popped to ASDA which is quite close to my house and got a few bits, nothing heavy and as I was walking home some bloke offered to carry my bags for me because his misses was due soon and he wouldn't let her struggle with bags. Firstly I wasn't struggling I was adjusting my handbag cus the strap was lying over my port and was uncomfortable after just been flushed, Secondly, 2 bags! Seriously a pregnant woman can carry 2 bags! Thirdly, oh yeah, I'M NOT BLOODY PREGNANT!!! Yeah I have a belly, but nothing too huge, and it just makes me feel quite self conscious. I think if my LF wasn't correlating so well with my weight I would defiantly be dieting, I am planning to start doing sit ups once my CGMS is out though, I wasn't really loving this weight gain much, my clothes are quite tight and this has made me hate it more. Anyway I'm hardly keeping my eyes open here so I'm going to go bed but I may write more about gaining weight/female perceptions of weight gain/LF's and all that!
Thursday 11 March 2010
Happier Me!!
So I took a little break from blogging, kind of intended and kind of not. Not really many reasons but I'm back now! LOL!
I'm a little sore because I'm not a good go-kart driver, I manage to bruise my abdomen, not badly but it's still quite sore so I'm best friends with paracetamol! Over all I don't feel bad, I dont think my lung function is back up to it's best but I don't think its down, so fingers crossed and I'll found out next Monday!
Went to my Dad's last week and loved it, the weather was OK but not amazing but just loved seeing the kids, everytime I see them I miss them more when I get home. Can't wait until the little man's 1st birthday cus they are coming over to England for a days for a party, talking of parties mine is coming along nicely, my flatmate has got the week off work and she wants to help with food and stuff! Things are alot better there and we had a chat, I kinda skirted around the edges of my issues but mentioned things about living donors and how unselfish it is and I think I got my point across and how important it is too me. I've ordered a few little bits off the NHSBT website to go in party bags, I have 22 people at my party, I know my Mum and Dad are already on the list and a few other people but hoping the rest of the people there will sign up too!
I still have a letter to write for my donor, I know he won't be able to read it but I still want to write it, to show how much I am thankful for what he did. This is actually proving harder to write that I first thought, I thought it would be easy because I know how much it means to me but the right words are proving hard to get onto paper!
Just before I go (I've been writing this for alot longer than I planned) I just want to say a massive congratulations to Rachael Wakefield (Rachy) who had her lung transplant yesterday, last update I heard she was out of theathre and in ICU. Can't wait to hear how she enjoy her new lungs and also to hear that other people waiting have got their calls as well (and not false alarms!)
I'm a little sore because I'm not a good go-kart driver, I manage to bruise my abdomen, not badly but it's still quite sore so I'm best friends with paracetamol! Over all I don't feel bad, I dont think my lung function is back up to it's best but I don't think its down, so fingers crossed and I'll found out next Monday!
Went to my Dad's last week and loved it, the weather was OK but not amazing but just loved seeing the kids, everytime I see them I miss them more when I get home. Can't wait until the little man's 1st birthday cus they are coming over to England for a days for a party, talking of parties mine is coming along nicely, my flatmate has got the week off work and she wants to help with food and stuff! Things are alot better there and we had a chat, I kinda skirted around the edges of my issues but mentioned things about living donors and how unselfish it is and I think I got my point across and how important it is too me. I've ordered a few little bits off the NHSBT website to go in party bags, I have 22 people at my party, I know my Mum and Dad are already on the list and a few other people but hoping the rest of the people there will sign up too!
I still have a letter to write for my donor, I know he won't be able to read it but I still want to write it, to show how much I am thankful for what he did. This is actually proving harder to write that I first thought, I thought it would be easy because I know how much it means to me but the right words are proving hard to get onto paper!
Just before I go (I've been writing this for alot longer than I planned) I just want to say a massive congratulations to Rachael Wakefield (Rachy) who had her lung transplant yesterday, last update I heard she was out of theathre and in ICU. Can't wait to hear how she enjoy her new lungs and also to hear that other people waiting have got their calls as well (and not false alarms!)
Subscribe to:
Posts (Atom)
