Hi all
I have started a new blog for my annual skin problems. You can find it here.
Showing posts with label sun. Show all posts
Showing posts with label sun. Show all posts
Monday, 28 June 2010
Tuesday, 27 April 2010
A quick catch up
My UV-induced rash has started up. That'll be me looking like a case of measles (hands and arms only, hopefully) till towards the end of October. Hey ho! Hence the feeling slightly miserable.
There's no news on the job front. Not even a phone call to say "we don't know anything", which is quite rude seeing as I have been sending e-mails and calling only to be told that someone will call me back later the same day. This is through a different agency to the one that currently employs me, not the company that was advertising the job in the first place. Hence the feeling slightly miserable.
My brother has the results back from his mole biopsy. Whilst not the worst news, there are definitely cells that have changed from 'normal' so, like me, he has to be careful. Hence the feeling more than slightly miserable.
Normal service might be resumed this week. (And before anyone gets excited I'm not THAT miserable, just bl**dy tired).
There's no news on the job front. Not even a phone call to say "we don't know anything", which is quite rude seeing as I have been sending e-mails and calling only to be told that someone will call me back later the same day. This is through a different agency to the one that currently employs me, not the company that was advertising the job in the first place. Hence the feeling slightly miserable.
My brother has the results back from his mole biopsy. Whilst not the worst news, there are definitely cells that have changed from 'normal' so, like me, he has to be careful. Hence the feeling more than slightly miserable.
Normal service might be resumed this week. (And before anyone gets excited I'm not THAT miserable, just bl**dy tired).
Tuesday, 2 March 2010
Oh shit!
It's my blog and I'll swear if I want to!
At the weekend I learned that my baby brother - 8 years younger than me - has a dark mole that itches and that he's having it removed tomorrow. It was very quick from him seeing his GP to seeing the specialist to getting the date for removal - 3 weeks as far as I can work out. This is the first time he's ever had to deal with his skin going off on one. Me, I live with it due to dysplastic naevus syndrome. Click on the link and scroll down the page to the relevant bit, but humour me and read ALL the page.
So far, I haven't had the dreaded words "I'm sorry Mrs B but it's malignant" despite having 3 moles removed on the 'better safe than sorry' principle - mine not the dermatologist's.
If you have any spare prayers, positive vibes, or similar going I'm sure he and his family will appreciate it. He has a wife and 2 young children.
Thanks muchly.
At the weekend I learned that my baby brother - 8 years younger than me - has a dark mole that itches and that he's having it removed tomorrow. It was very quick from him seeing his GP to seeing the specialist to getting the date for removal - 3 weeks as far as I can work out. This is the first time he's ever had to deal with his skin going off on one. Me, I live with it due to dysplastic naevus syndrome. Click on the link and scroll down the page to the relevant bit, but humour me and read ALL the page.
So far, I haven't had the dreaded words "I'm sorry Mrs B but it's malignant" despite having 3 moles removed on the 'better safe than sorry' principle - mine not the dermatologist's.
If you have any spare prayers, positive vibes, or similar going I'm sure he and his family will appreciate it. He has a wife and 2 young children.
Thanks muchly.
Thursday, 29 October 2009
Bognor's nice
Today I took K to look round the Bognor Campus of Chichester University. It's a couple of years early (she's planning to do 3 years at college) but she wanted a look to see if it really was for her. Bognor is a small campus, focusing mainly on Business and Education courses. There are only 3 halls of residence and it really is a very small site.
Anyway she thinks it's lovely. The rooms in the halls are bigger than hers. There are no big lecture halls; lessons are given in classrooms similar to those used in schools and colleges. She also likes the idea that it is less than a mile's walk to the beach. And the strangest thing of all, according to her, is how far it is to the horizon at sea when there's no Isle of Wight in the way. She couldn't get over it. It was very warm so we sat on the sea wall, eating ice cream, as the sun came out.
K reckons she gets the same positive vibes about Bognor Campus as she did when she looked round St Vincent (where she is now at college) - warm, inviting, friendly, welcoming, etc.
So look out all the other universities, you've got your work cut out to convince her to come to you.
Anyway she thinks it's lovely. The rooms in the halls are bigger than hers. There are no big lecture halls; lessons are given in classrooms similar to those used in schools and colleges. She also likes the idea that it is less than a mile's walk to the beach. And the strangest thing of all, according to her, is how far it is to the horizon at sea when there's no Isle of Wight in the way. She couldn't get over it. It was very warm so we sat on the sea wall, eating ice cream, as the sun came out.
K reckons she gets the same positive vibes about Bognor Campus as she did when she looked round St Vincent (where she is now at college) - warm, inviting, friendly, welcoming, etc.
So look out all the other universities, you've got your work cut out to convince her to come to you.
Wednesday, 2 September 2009
And so it goes on
I had an appointment this morning at the dermatology clinic for a review of my polymorphic light eruption (PLE) and a check on how the UV desensitisation was going. A came with me as his memories of the last couple of summers are different to mine - one of us is obviously getting Alzheimers LOL!
Before we went I had more or less decided to take next year off the desensitising just to see how effective it had been. Last year I had the treatment in the narrowband UVB machine, starting early February and finishing early-mid March. I had my first proper break out on May 11th. Yes, I had been 'foolish' insofar as going around in warm, sunny weather without long sleeves or sun cream. When I reacted I was devastated. However it never got as bad as the previous year (pre-treatment). Yet as the summer went on I slowly but surely reverted to that previous year's sensitivity levels.
This year I had the treatment in the 'other' machine (UVA & UVB), starting early March and finishing just before Easter (mid April). I broke out on Whit Sunday. Again it was probably my own fault for sitting in my friend's garden (too hot in the house, it was a sauna-like day) for 4 hours. I sat under an umbrella as much as possible but it was probably asking for trouble really. That evening I felt exhausted (could be down to the alcohol consumed or not) and very spotty, and a little itchy. This year I'd been a bit more careful and not taken so many chances, so I was particularly put out that although the treatment had started a month later it had only bought me 2 weeks extra freedom. And, like last year, as the summer has progressed I have once again reverted to pre-treatment levels of sensitivity. In fact in August my skin got spotty just from putting the washing out (grump!).
This is why I'd like a year off treatment to see how next year goes. The weather is rather an important, and uncontrollable, variable but if going into Southampton 3 times a week for 5 weeks for 20 minutes at a time (from entering to leaving) is not really going to get me more than 6 weeks or so's freedom is it really worth it? I think not, especially as all that radiation treatment ('cos that's what UV is) could possibly upset one of my moles and turn it cancerous.
So, after having a good cry in front of the SHO this morning, I got a chat with Dr Ardern-Jones himself. He is having second thoughts on the diagnosis of PLE. I have got to provide samples of my pee and poo, AND have blood taken (needles!!!!!!) all on the same day - yes I HATES needles, but if having regular jabs would calm all this down I'd do it. Oh, and none of them can be exposed to light. I have to catch them in foil covered containers, otherwise they will be contaminated and not be testable - any bright ideas on a postcard please.
That lot will get sent away and tested, mainly for porphyria with some blood being tested for lupus. If that lot come back negative I get a trip to Amersham/High Wycombe for some in-depth screening - they have better kit than Southampton. I had a choice between there, Cardiff and London. If I was on my own I'd probably have opted for London but, as A was with me and will be taxi driver on the day, he chose that one. What would I do without him!
Of course, I've been researching these conditions and, although I have no training whatsoever and therefore should not tell an expert he's looking the wrong way, I think it seems more likely to be lupus - certainly fits better with some of the non-skin issues I've had in recent years. If it does turn out to be porphyria (and there are 7 to choose from), please can it be one of those that doesn't have liver involvement. Me, no booze ever again?! Yeah, right.
Before we went I had more or less decided to take next year off the desensitising just to see how effective it had been. Last year I had the treatment in the narrowband UVB machine, starting early February and finishing early-mid March. I had my first proper break out on May 11th. Yes, I had been 'foolish' insofar as going around in warm, sunny weather without long sleeves or sun cream. When I reacted I was devastated. However it never got as bad as the previous year (pre-treatment). Yet as the summer went on I slowly but surely reverted to that previous year's sensitivity levels.
This year I had the treatment in the 'other' machine (UVA & UVB), starting early March and finishing just before Easter (mid April). I broke out on Whit Sunday. Again it was probably my own fault for sitting in my friend's garden (too hot in the house, it was a sauna-like day) for 4 hours. I sat under an umbrella as much as possible but it was probably asking for trouble really. That evening I felt exhausted (could be down to the alcohol consumed or not) and very spotty, and a little itchy. This year I'd been a bit more careful and not taken so many chances, so I was particularly put out that although the treatment had started a month later it had only bought me 2 weeks extra freedom. And, like last year, as the summer has progressed I have once again reverted to pre-treatment levels of sensitivity. In fact in August my skin got spotty just from putting the washing out (grump!).
This is why I'd like a year off treatment to see how next year goes. The weather is rather an important, and uncontrollable, variable but if going into Southampton 3 times a week for 5 weeks for 20 minutes at a time (from entering to leaving) is not really going to get me more than 6 weeks or so's freedom is it really worth it? I think not, especially as all that radiation treatment ('cos that's what UV is) could possibly upset one of my moles and turn it cancerous.
So, after having a good cry in front of the SHO this morning, I got a chat with Dr Ardern-Jones himself. He is having second thoughts on the diagnosis of PLE. I have got to provide samples of my pee and poo, AND have blood taken (needles!!!!!!) all on the same day - yes I HATES needles, but if having regular jabs would calm all this down I'd do it. Oh, and none of them can be exposed to light. I have to catch them in foil covered containers, otherwise they will be contaminated and not be testable - any bright ideas on a postcard please.
That lot will get sent away and tested, mainly for porphyria with some blood being tested for lupus. If that lot come back negative I get a trip to Amersham/High Wycombe for some in-depth screening - they have better kit than Southampton. I had a choice between there, Cardiff and London. If I was on my own I'd probably have opted for London but, as A was with me and will be taxi driver on the day, he chose that one. What would I do without him!
Of course, I've been researching these conditions and, although I have no training whatsoever and therefore should not tell an expert he's looking the wrong way, I think it seems more likely to be lupus - certainly fits better with some of the non-skin issues I've had in recent years. If it does turn out to be porphyria (and there are 7 to choose from), please can it be one of those that doesn't have liver involvement. Me, no booze ever again?! Yeah, right.
Friday, 29 May 2009
So far, so good
I've now done two Pampered Chef parties and earned myself £65. It doesn't sound much for 3 weeks work but when you realise that it was less than 8 hours work in total, the hourly rate is much more interesting - somewhere around £8 - £10 per hour. Certainly worth my while! June is already busy with 5 parties (but I can certainly squeeze in one or two more), and I've already started booking for July.
Today is a beautiful day. The kids are in town with friends, and A is at work, so the house is all mine - a rarity till September when both D & K are at college. So I'm sat at the computer listening to Bon Jovi and catching up on reading some blogs. I may even drag up Civ IV shortly. Oh, the decadence! I probably should point out that there are already 2 loads of washing on the line and all the paperwork from last night's party is dealt with, so I'm not being a lazy toad all day - though it does have its appeal.
Last Sunday friend E had a house-warming party. Her back garden has very little shade but some kind soul had brought along some umbrellas to act as parasols, so I borrowed one - not a perfect solution but better than nothing. I survived in short sleeves for a few hours until the rash started. I'm not downhearted about it this year, as spending 4 - 5 hours in direct sunshine is probably asking for trouble. However I am feeling quite smug about it as the rash didn't develop into full-blown red spots - it was more bumps in the skin. Now all I have to do is wait for them to clear off (up to two weeks from flare up).
The kids have finally spotted themselves a nice little earner - unfortunately it is me that is coughing up. They've twigged that voluntarily doing chores round the house and helping me with my PC stuff will probably trigger financial remuneration. D, in particular, has been most helpful in the last few days as he has too much month at the end of his allowance (as usual).
A is working hard but seems to have his hayfever under control (so far!). I've probably jinxed him now. We're making a slow but steady effort in sorting out the garage so that - GASP! - we can get to anything in it from the internal door instead of having to open the main door to get to the fuse box. Wonder if the local tip will start charging us business rates for all the clutter we're getting rid of.
Today is a beautiful day. The kids are in town with friends, and A is at work, so the house is all mine - a rarity till September when both D & K are at college. So I'm sat at the computer listening to Bon Jovi and catching up on reading some blogs. I may even drag up Civ IV shortly. Oh, the decadence! I probably should point out that there are already 2 loads of washing on the line and all the paperwork from last night's party is dealt with, so I'm not being a lazy toad all day - though it does have its appeal.
Last Sunday friend E had a house-warming party. Her back garden has very little shade but some kind soul had brought along some umbrellas to act as parasols, so I borrowed one - not a perfect solution but better than nothing. I survived in short sleeves for a few hours until the rash started. I'm not downhearted about it this year, as spending 4 - 5 hours in direct sunshine is probably asking for trouble. However I am feeling quite smug about it as the rash didn't develop into full-blown red spots - it was more bumps in the skin. Now all I have to do is wait for them to clear off (up to two weeks from flare up).
The kids have finally spotted themselves a nice little earner - unfortunately it is me that is coughing up. They've twigged that voluntarily doing chores round the house and helping me with my PC stuff will probably trigger financial remuneration. D, in particular, has been most helpful in the last few days as he has too much month at the end of his allowance (as usual).
A is working hard but seems to have his hayfever under control (so far!). I've probably jinxed him now. We're making a slow but steady effort in sorting out the garage so that - GASP! - we can get to anything in it from the internal door instead of having to open the main door to get to the fuse box. Wonder if the local tip will start charging us business rates for all the clutter we're getting rid of.
Wednesday, 4 March 2009
A selfish post
This one's all about me and none of the others are going to get a mention.
Yesterday I started broadband UVB desensitisation for my P(M)LE. It was only a small patch test to find out what dose would give me a burn. I ended up going pink in two of them, and applying copious amounts of aqueous cream to soothe the stinging.
Today I had my first proper session. They started me off at 50% of the dose that caused the pinkness yesterday. This evening my whole back is slightly pink and quite warm, as is one elbow. A (the only mention, honest) has had a pleasurable few minutes slapping E45 all over.
Also yesterday I got a reply from a job I applied for last week, the Junior Accounting Clerk one in Eastleigh. I have an interview tomorrow at 2pm. Fingers crossed I do alright. They are proposing to send the lucky person to college in September to start their accountancy qualifications.
Oh, and I got a haircut today at the local college.
Yesterday I started broadband UVB desensitisation for my P(M)LE. It was only a small patch test to find out what dose would give me a burn. I ended up going pink in two of them, and applying copious amounts of aqueous cream to soothe the stinging.
Today I had my first proper session. They started me off at 50% of the dose that caused the pinkness yesterday. This evening my whole back is slightly pink and quite warm, as is one elbow. A (the only mention, honest) has had a pleasurable few minutes slapping E45 all over.
Also yesterday I got a reply from a job I applied for last week, the Junior Accounting Clerk one in Eastleigh. I have an interview tomorrow at 2pm. Fingers crossed I do alright. They are proposing to send the lucky person to college in September to start their accountancy qualifications.
Oh, and I got a haircut today at the local college.
Tuesday, 29 July 2008
Not much happening
Just thought I'd check in.
The kids are off on camp till Sunday - peace and quiet reigns.
Scooby is on antibiotics again. This recurring superficial pyoderma is a pain. His appetite will go and it will be 'interesting' trying to get all his pills down him - the ones that go on his food will be untouched otherwise.
Thank goodness today is a little cooler. This hot weather is not doing my sense of humour any good. I have lumpy skin but it's not glaringly obvious like it usually is at this time of year.
Gammon, egg and chips for tea tonight.
The kids are off on camp till Sunday - peace and quiet reigns.
Scooby is on antibiotics again. This recurring superficial pyoderma is a pain. His appetite will go and it will be 'interesting' trying to get all his pills down him - the ones that go on his food will be untouched otherwise.
Thank goodness today is a little cooler. This hot weather is not doing my sense of humour any good. I have lumpy skin but it's not glaringly obvious like it usually is at this time of year.
Gammon, egg and chips for tea tonight.
Sunday, 29 June 2008
One of life's lessons
My two have been to the beach today with a couple of friends. One of the friends parents did taxi duties, otherwise the kids were left to their own devices for the day. They took towels, sun cream and a packed lunch.
Apparently they all had a great time. Mine now have a better idea of how much sun cream is enough and that they should re-apply it every 2 - 3 hours. My after-sun supplies are taking a heavy hit.
Me?! Laugh?! As if.
Apparently they all had a great time. Mine now have a better idea of how much sun cream is enough and that they should re-apply it every 2 - 3 hours. My after-sun supplies are taking a heavy hit.
Me?! Laugh?! As if.
Saturday, 14 June 2008
This week's round-up
I thought I'd write one long post instead of several smaller ones.
D's last GCSE exam was on Thursday afternoon. Technically he is now finished with compulsory education, even though the official leaving date for Yr 11's is 30th June. He's planning to spend the next 3 months being lazy - apart from the two weeks work experience next month - but he can plan again. I've told him that he is going to be improving his domestic science skills.
Sea Scouts had invited D along last night to give it a go. I must stop calling it sea scouts though as it's really Explorers. During the day K decided she'd like to try to, so at 6.15 yesterday evening we were down at the quayside. I introduced the kids to one of the organisers and that was the last I had to do with it till they came back at 8.15 ish. K was ecstatic - she'd been allowed to helm the boat - and had a dreamy expression on her face. D came back with a broad grin. Malcolm (organiser) had taken them out in a Wayfarer and introduced them to the art of sails and rudder - many thanks Malcolm. K accidentally crashed into a wooden piling but blamed the boys for not telling her it was there. No damage was done. They both can't wait till next Friday evening.
The results of my patch-testing were a bit of an anti-climax. I reacted quite well to balsam of peru - no I'd never heard of it either - and fragrances. The suncream set were normal! So it seems I can slap it on with gay abandon, making sure it is fragrance-free - no more tacky coconut-smelling gunk. This morning I took the dog a walk and slapped some suncream on my face and arms. So far, so good. No redness, itching, runny eyes. Yet this same product (as in it's the same tube) made my face go all hot and red last year. Confused? Yeah, me too.
I have an appointment for January to see Mr Arden-Jones, my wonderful dermatologist, to schedule another session of 'medical microwaving'. A and I have discussed this and decided that, for now, the benefits outweigh the risks. I get a P(M)LE rash every year but I may never get malignant melanoma, even though my chances are somewhere around 1-30 to 1-40. Apart from a little outbreak in May my rash is behaving itself quite nicely this year. You watch, now I've jinxed msyelf and will look like a bad measles outbreak till October.
Almost forgot to tell you about the compliment I was paid by friends on Thursday. Bearing in mind my skin issues, particularly on my face, and the fact that only use water on it - no make-up, no cleanse/tone/moisturise - I was pleasantly surprised to be told my skin is looking really good. Apparently I am glowing with health and they can tell I've lost weight.
D's last GCSE exam was on Thursday afternoon. Technically he is now finished with compulsory education, even though the official leaving date for Yr 11's is 30th June. He's planning to spend the next 3 months being lazy - apart from the two weeks work experience next month - but he can plan again. I've told him that he is going to be improving his domestic science skills.
Sea Scouts had invited D along last night to give it a go. I must stop calling it sea scouts though as it's really Explorers. During the day K decided she'd like to try to, so at 6.15 yesterday evening we were down at the quayside. I introduced the kids to one of the organisers and that was the last I had to do with it till they came back at 8.15 ish. K was ecstatic - she'd been allowed to helm the boat - and had a dreamy expression on her face. D came back with a broad grin. Malcolm (organiser) had taken them out in a Wayfarer and introduced them to the art of sails and rudder - many thanks Malcolm. K accidentally crashed into a wooden piling but blamed the boys for not telling her it was there. No damage was done. They both can't wait till next Friday evening.
The results of my patch-testing were a bit of an anti-climax. I reacted quite well to balsam of peru - no I'd never heard of it either - and fragrances. The suncream set were normal! So it seems I can slap it on with gay abandon, making sure it is fragrance-free - no more tacky coconut-smelling gunk. This morning I took the dog a walk and slapped some suncream on my face and arms. So far, so good. No redness, itching, runny eyes. Yet this same product (as in it's the same tube) made my face go all hot and red last year. Confused? Yeah, me too.
I have an appointment for January to see Mr Arden-Jones, my wonderful dermatologist, to schedule another session of 'medical microwaving'. A and I have discussed this and decided that, for now, the benefits outweigh the risks. I get a P(M)LE rash every year but I may never get malignant melanoma, even though my chances are somewhere around 1-30 to 1-40. Apart from a little outbreak in May my rash is behaving itself quite nicely this year. You watch, now I've jinxed msyelf and will look like a bad measles outbreak till October.
Almost forgot to tell you about the compliment I was paid by friends on Thursday. Bearing in mind my skin issues, particularly on my face, and the fact that only use water on it - no make-up, no cleanse/tone/moisturise - I was pleasantly surprised to be told my skin is looking really good. Apparently I am glowing with health and they can tell I've lost weight.
Thursday, 12 June 2008
Self-experimentation
Yesterday I had all my sticky patches removed - talk about a free NHS back wax! There were a few possibly/maybe pink patches of skin but nothing raised or itchy. In fact it itched most where the sticky stuff had been.
The upper section of patches that had been UVA blasted on Tuesday lunchtime are refusing to react. So this evening, being the inquisitive mare that I am, I decided to slap some of my sun cream on the right hand side of my face. It's been on for 45 minutes now and I've spent maybe 4 - 5 minutes standing in what is left of the day's sun and it just feels slightly prickly. NO streaming eyes, NO red, hot skin! Think I might have to try again tomorrow and make sure I get plenty of rays on it. It's only last year that my face would react quite quickly to sun cream.
I should be happy, but it was because of this problem that they had me in for patch testing in the first place! AArghh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The upper section of patches that had been UVA blasted on Tuesday lunchtime are refusing to react. So this evening, being the inquisitive mare that I am, I decided to slap some of my sun cream on the right hand side of my face. It's been on for 45 minutes now and I've spent maybe 4 - 5 minutes standing in what is left of the day's sun and it just feels slightly prickly. NO streaming eyes, NO red, hot skin! Think I might have to try again tomorrow and make sure I get plenty of rays on it. It's only last year that my face would react quite quickly to sun cream.
I should be happy, but it was because of this problem that they had me in for patch testing in the first place! AArghh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Monday, 9 June 2008
Make sure you have a clothes peg....
.......if you see me this week. Why? Well, today I have started my patch-testing sessions at the dermatology unit. My back is awash with micropore holding down swathes of allergen-coated metal discs. I am not allowed to have a shower till at least Friday night and with the weather being as seasonal as it is I'm going to stink to high heaven by then. Hence the need for a clothes peg for your nose if you have the dubious pleasure of being in the same postcode as me.
Also I'm not allowed to do anything which may cause me to sweat - which rules out pretty much everything whilst it's this warm! I can't do anything which would involve lifting or twisting the back so that I don't dislodge the micropore and introduce air/moisture to the patches. It's a good job my kids are domesticated. K made a delicious curry for tea tonight. All that was needed was for A to show her how to do rice when we got back from the hospital.
I caused great anarchy at the hospital. In my defence it was a case of left hand not talking to right hand. I had told the head derm that the sunlight causes a fair number of skin reactions with suncreams and perfumes, so I would have thought that someone would have picked up on the fact that photo patch-testing would also be required. This IS the NHS so, of course, no-one had. Fortunately the ladies who run the light treatment room remembered me and, after asking how I was doing after my sessions in February/March, bent over backwards to fit me in.
One stayed later this afternoon for my test session. It being a hot day I had gone in in t-shirt and capri pants with sandals. So this nice nurse fetched a pair of blue scrubs and a large roll of elastoplast and, along with a couple of towels and blankets, proceeded to mummify me - apart from my face (protected by UV goggles and a clear welders mask) and a small spot on my right buttock that got zapped by the UVA. I was a little put out to hear I was going to be zapped for 7 minutes! I'm not claustrophobic as such but do prefer not to be enclosed for that sort of length of time, especially in a mummy outfit - BTW, my arms were inside the scrubs top as there was no real way of covering them up. Somehow I made it through and became a bit sweaty, which isn't allowed is it?! Then tomorrow I get to go back (12 noon) and have some allergens applied to an arm, and then be zapped again (legngth and strength of zap to be determined by how today's test session reacts) for up to 7 minutes.
On Wednesday I go back at 3pm to have all the micropore bits taken off and my back decorated with indelible marker - to mark where the patches are so that reactions can be seen. I hope it doesn't take as long as today as I'd really like to be out before rush-hour kicks in. You see, on Wednesday Bon Jovi are playing at St Mary's football stadium which is less than a mile from the hospital (no, I'm not going, it's too expensive), AND Hampshire have their first 20-20 cricket match at the Rose Bowl that same evening. Some genius somewhere deserves a medal - NOT! The most popular junctions of the M27 for St Mary's are 5, 7 & 8, whilst the Rose Bowl is smack against junction 7 and it's Park & Ride scheme is at junction 8. Total gridlock will be the most likely outcome, so I am planning to return home via Fair Oak and Wickham.
I get a hospital day-off on Thursday (so far!) but D has his last GCSE paper in Portsmouth in the afternoon. I think we'll use the train.
On Friday it's back to the derm people at 3pm so they can assess what has caused a reaction. Hopefully they will tell me all about it at the same time. It'd be just my luck for them to say "We'll send for you in a couple of months when we've analysed all this". That'll be another summer down the pan, not knowing what suncreams I could try.
Then it's a nice long shower and hairwash, followed by taking D to sea scouts to see if he likes it. Seeing as the leader has told me to make sure he wears old clothes that can get wet and to take some spares I think D will be getting out on the water.
Anyone want to trade places this week?
Also I'm not allowed to do anything which may cause me to sweat - which rules out pretty much everything whilst it's this warm! I can't do anything which would involve lifting or twisting the back so that I don't dislodge the micropore and introduce air/moisture to the patches. It's a good job my kids are domesticated. K made a delicious curry for tea tonight. All that was needed was for A to show her how to do rice when we got back from the hospital.
I caused great anarchy at the hospital. In my defence it was a case of left hand not talking to right hand. I had told the head derm that the sunlight causes a fair number of skin reactions with suncreams and perfumes, so I would have thought that someone would have picked up on the fact that photo patch-testing would also be required. This IS the NHS so, of course, no-one had. Fortunately the ladies who run the light treatment room remembered me and, after asking how I was doing after my sessions in February/March, bent over backwards to fit me in.
One stayed later this afternoon for my test session. It being a hot day I had gone in in t-shirt and capri pants with sandals. So this nice nurse fetched a pair of blue scrubs and a large roll of elastoplast and, along with a couple of towels and blankets, proceeded to mummify me - apart from my face (protected by UV goggles and a clear welders mask) and a small spot on my right buttock that got zapped by the UVA. I was a little put out to hear I was going to be zapped for 7 minutes! I'm not claustrophobic as such but do prefer not to be enclosed for that sort of length of time, especially in a mummy outfit - BTW, my arms were inside the scrubs top as there was no real way of covering them up. Somehow I made it through and became a bit sweaty, which isn't allowed is it?! Then tomorrow I get to go back (12 noon) and have some allergens applied to an arm, and then be zapped again (legngth and strength of zap to be determined by how today's test session reacts) for up to 7 minutes.
On Wednesday I go back at 3pm to have all the micropore bits taken off and my back decorated with indelible marker - to mark where the patches are so that reactions can be seen. I hope it doesn't take as long as today as I'd really like to be out before rush-hour kicks in. You see, on Wednesday Bon Jovi are playing at St Mary's football stadium which is less than a mile from the hospital (no, I'm not going, it's too expensive), AND Hampshire have their first 20-20 cricket match at the Rose Bowl that same evening. Some genius somewhere deserves a medal - NOT! The most popular junctions of the M27 for St Mary's are 5, 7 & 8, whilst the Rose Bowl is smack against junction 7 and it's Park & Ride scheme is at junction 8. Total gridlock will be the most likely outcome, so I am planning to return home via Fair Oak and Wickham.
I get a hospital day-off on Thursday (so far!) but D has his last GCSE paper in Portsmouth in the afternoon. I think we'll use the train.
On Friday it's back to the derm people at 3pm so they can assess what has caused a reaction. Hopefully they will tell me all about it at the same time. It'd be just my luck for them to say "We'll send for you in a couple of months when we've analysed all this". That'll be another summer down the pan, not knowing what suncreams I could try.
Then it's a nice long shower and hairwash, followed by taking D to sea scouts to see if he likes it. Seeing as the leader has told me to make sure he wears old clothes that can get wet and to take some spares I think D will be getting out on the water.
Anyone want to trade places this week?
Saturday, 10 May 2008
Why I hate hot nights
It's now officially too hot to leave the bedroom windows closed. Unfortunately that means that I get woken up, frequently, by people coming home from the pub/nightclub. I have enough difficulty sleeping in hot weather as it is without being roused from my slumber by shrieks and giggles or one-sided mobile phone conversations.
I'm not ecstatic about hot days either but at least I can take refuge in front of a fan. I need peace and quiet to sleep so have to turn them off at night.
Going off at a tangent - I can't decide if my hands/arms are reacting or not. The skin isn't smooth at the best of times so it isn't always obvious if new spots are UV related or just a coincidence. Fingers crossed it's the latter.
I'm not ecstatic about hot days either but at least I can take refuge in front of a fan. I need peace and quiet to sleep so have to turn them off at night.
Going off at a tangent - I can't decide if my hands/arms are reacting or not. The skin isn't smooth at the best of times so it isn't always obvious if new spots are UV related or just a coincidence. Fingers crossed it's the latter.
Monday, 10 March 2008
My love/hate relationship with the sun
Those of you who know me know that I have a UV intolerance. This means that once the sun's rays get to a certain strength my forearms and hands come out in tiny red raised spots. If I overdo it outside - and we're not talking more than 5 minutes at the height of summer - then they itch like anything! The dermatology department has diagnosed Polymorphic Light Eruption or PLE/PMLE. Last year the rash started in mid-March and lasted till mid-October, even with all that cloudy wet weather we had.
For the past 5 weeks I have been going to the local hospital for desensitisation treatment. This means I get to spend 30 - 45 seconds in a medically controlled sun-bed that emits UVB frequency lightwaves. Today was my last session and I can't say that I'll miss it. Certain bits of my body that are never normally exposed to daylight have reacted quite well, no itch fortunately, but plenty of spots. Yet the arms and hands that are normally the problem haven't reacted at all. Here's hoping that this means that they have been desensitised and I'll be able to hang my own washing out on the line this summer. I'm fortunate that both D and K are willing and able to do this for me when I'm suffering. A is at work and excused.
To add insult to all of this I also have Dysplastic Naevus Syndrome. This is where I have several moles that are 1cm+ in diameter. The syndrome increases my chances of getting malignant melanoma, and of all the skin cancers out there this is the least nice.
I also have issues with lots of skincare products, particularly when they come into contact with my face - and if they're on my hands they're going to get on my face. My face goes red, hot, itchy, sore, and my eyes start to run. For this reason the only thing I use on my face is tap water - no make-up, no cleanser, no moisturiser, no soap, no suncream. I've tried all the sensitive/hypoallergenic stuff but it still upsets me. Fingers crossed the hospital doesn't move my appointments for patch-testing again. They've already moved from February to April to June. Any later and that'll be another year of lurking indoors.
I'm supposed to bath myself in suncream before I go out to try and stop the PLE and a rogue mole. It's just not practical to slap it on my hands before hanging out any washing as it gets all over the washing. So I don't bother with it at all. Instead I try to wear long-sleeved/long-legged garments and a big hat. It's not a lot of fun when the temperatures rise.
I live near the sea, I have a beautiful garden to sit in, sunny days give me a lift, yet I am more or less housebound in summer. I have to plan my forays out with military precision. Friends are very good. They make sure there is a seat in the shade if we all go out together. It's not always enough as I often feel wiped out the next day as well as spotty.
I'm not asking to be able to sunbathe for hours at a time. I'd just like to be able to function normally.
For the past 5 weeks I have been going to the local hospital for desensitisation treatment. This means I get to spend 30 - 45 seconds in a medically controlled sun-bed that emits UVB frequency lightwaves. Today was my last session and I can't say that I'll miss it. Certain bits of my body that are never normally exposed to daylight have reacted quite well, no itch fortunately, but plenty of spots. Yet the arms and hands that are normally the problem haven't reacted at all. Here's hoping that this means that they have been desensitised and I'll be able to hang my own washing out on the line this summer. I'm fortunate that both D and K are willing and able to do this for me when I'm suffering. A is at work and excused.
To add insult to all of this I also have Dysplastic Naevus Syndrome. This is where I have several moles that are 1cm+ in diameter. The syndrome increases my chances of getting malignant melanoma, and of all the skin cancers out there this is the least nice.
I also have issues with lots of skincare products, particularly when they come into contact with my face - and if they're on my hands they're going to get on my face. My face goes red, hot, itchy, sore, and my eyes start to run. For this reason the only thing I use on my face is tap water - no make-up, no cleanser, no moisturiser, no soap, no suncream. I've tried all the sensitive/hypoallergenic stuff but it still upsets me. Fingers crossed the hospital doesn't move my appointments for patch-testing again. They've already moved from February to April to June. Any later and that'll be another year of lurking indoors.
I'm supposed to bath myself in suncream before I go out to try and stop the PLE and a rogue mole. It's just not practical to slap it on my hands before hanging out any washing as it gets all over the washing. So I don't bother with it at all. Instead I try to wear long-sleeved/long-legged garments and a big hat. It's not a lot of fun when the temperatures rise.
I live near the sea, I have a beautiful garden to sit in, sunny days give me a lift, yet I am more or less housebound in summer. I have to plan my forays out with military precision. Friends are very good. They make sure there is a seat in the shade if we all go out together. It's not always enough as I often feel wiped out the next day as well as spotty.
I'm not asking to be able to sunbathe for hours at a time. I'd just like to be able to function normally.
Subscribe to:
Posts (Atom)