How awesome are Coeliac UK, I'll tell you. After my emergency admission to the local hospital last week and the ensuing problems with trying to access gluten free food, I came home and just copied in CUK in my communictions with the hospitals PALS department.
It appears that in my case there was a communication breakdown and I wasn't told something as basic as they had a separate Gluten Free menu (now I know!!) and that some of their procedures weren't followed for whatever reason.
The next thing to appear in my inbox is a request from CUK that the hospital do some digging into what actually went wrong.....this was a copied message. I tell you what, I felt so supported after the disappointment of the problems whilst I was in the hospital. They've kicked butt just for me, it made it feel worhtwhile being a member of the charity and is well worth the £20 a year they charge us for that kind of support.
I am impressed and really pleased, as I have had back up support. Wonderful. and Thank You to those of you that do this for us.
Wednesday 22 May 2013
Sunday 19 May 2013
Suspect your wondering
I suspect you're wondering where I got to this month!!
Firstly my brother was rushed into hospital at the end of April with a suspected heart attack, but it turned out to be Pericarditis, so although not life threatening I think it scared the wotsits out of everybody. Pleased to report he is doing well and should be fine for his wedding on 1st June.
Being Coeliac awareness week this week I thought I'd do my bit, I had posters put up in the Post Office the local Hairdressers and a very accomodating local coffee shop. I then got in the kitchen and was cooking and baking to take some food to Cubs on Monday (13th May) to explain to them that I have this illness and how hard sometimes it can be. The results of my improvised 'you go shopping game' was quite interesting, at one point the only 'safe' food I could eat was a box of pastry and a packet of fajita mix!! Despite the fact that a lot of the things I took with me were quite clearly marked gluten free....fortunately I don't have to rely on them to do my shopping!
I did have every intention on Wednesday of holding a coffee morning with gluten free goodies, however on Tuesday night/Wednesday morning I was admitted as an emergency to the local hospital with a suspected Deep Vein Thrombosis. Fortunately after some tests a DVT was ruled out, and within 24 hours I was back home dosed up on Antibiotics for a severe infection and Thrombophlebitis. Needless to say the coffee mornng never happened!! The experience at the hospital with my diet was not good either, they appeared totally clueless and I ended up with no food 3 times, now as a hospital I would expect better than that. Someone said I should have bought my own (at 2:00 in the morning unplanned?!)
I was presented with no breakfast, no lunch and no tea.......mmmmm. Anyway I'm home now and will be back at work (all being well) on Thursday next week.
So I've had an interesting month, the good thing that came out of the Cub meeting was this: They all decided that my Jaffa Cakes were really good, there weren't any Flapjacks left and they decided that GF food isn't as bad as many people think. But the best bit: PARENT: It's so nice for William to be able to eat everything, as usually he has to bring his own food. This Cub is allergic to a lot of things, but doesn't have Coeliac disease and I think Mum was really grateful that someone had taken into account, and understood some of the problems with the things that William can't eat. That meant more to me, than whether any of the kids had understood what I was talking about or even understood Coeliac Disease. I have no way of knowing but if only one went home a bit more aware then I achieved my goal.
Firstly my brother was rushed into hospital at the end of April with a suspected heart attack, but it turned out to be Pericarditis, so although not life threatening I think it scared the wotsits out of everybody. Pleased to report he is doing well and should be fine for his wedding on 1st June.
Being Coeliac awareness week this week I thought I'd do my bit, I had posters put up in the Post Office the local Hairdressers and a very accomodating local coffee shop. I then got in the kitchen and was cooking and baking to take some food to Cubs on Monday (13th May) to explain to them that I have this illness and how hard sometimes it can be. The results of my improvised 'you go shopping game' was quite interesting, at one point the only 'safe' food I could eat was a box of pastry and a packet of fajita mix!! Despite the fact that a lot of the things I took with me were quite clearly marked gluten free....fortunately I don't have to rely on them to do my shopping!
I did have every intention on Wednesday of holding a coffee morning with gluten free goodies, however on Tuesday night/Wednesday morning I was admitted as an emergency to the local hospital with a suspected Deep Vein Thrombosis. Fortunately after some tests a DVT was ruled out, and within 24 hours I was back home dosed up on Antibiotics for a severe infection and Thrombophlebitis. Needless to say the coffee mornng never happened!! The experience at the hospital with my diet was not good either, they appeared totally clueless and I ended up with no food 3 times, now as a hospital I would expect better than that. Someone said I should have bought my own (at 2:00 in the morning unplanned?!)
I was presented with no breakfast, no lunch and no tea.......mmmmm. Anyway I'm home now and will be back at work (all being well) on Thursday next week.
So I've had an interesting month, the good thing that came out of the Cub meeting was this: They all decided that my Jaffa Cakes were really good, there weren't any Flapjacks left and they decided that GF food isn't as bad as many people think. But the best bit: PARENT: It's so nice for William to be able to eat everything, as usually he has to bring his own food. This Cub is allergic to a lot of things, but doesn't have Coeliac disease and I think Mum was really grateful that someone had taken into account, and understood some of the problems with the things that William can't eat. That meant more to me, than whether any of the kids had understood what I was talking about or even understood Coeliac Disease. I have no way of knowing but if only one went home a bit more aware then I achieved my goal.
Saturday 4 May 2013
Stressed out
I got so stressed out the other day, as the invites for my brothers wedding came through. The reception is afternoon tea...... and the venue isn't listed on CUK.
I think I kind of panicked!!! Afternoon tea as you know usually consists of plates of Sandwiches and different types of cakes and fancies.........in fact a Coeliacs nightmare!!!
Got really wound up and spent most of the other day trying to calm myself down. I did email the venue asking lots of questions, and to date I've had no reply.
I needn't have worried my future Sister in Law is an events manager, which I had totally forgotten and I have been in communication with my brother too, they are talking to the caterers so hopefully all will be (and it had better be!!) fine.
My brothers wedding is not a celebration I wish to have spoilt by an uninformed venue. Well we'll see.
I think I kind of panicked!!! Afternoon tea as you know usually consists of plates of Sandwiches and different types of cakes and fancies.........in fact a Coeliacs nightmare!!!
Got really wound up and spent most of the other day trying to calm myself down. I did email the venue asking lots of questions, and to date I've had no reply.
I needn't have worried my future Sister in Law is an events manager, which I had totally forgotten and I have been in communication with my brother too, they are talking to the caterers so hopefully all will be (and it had better be!!) fine.
My brothers wedding is not a celebration I wish to have spoilt by an uninformed venue. Well we'll see.
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