Well not quite the red carpet, but for a year now we have been waiting to see the results of the dvd we helped record last July! And it is looking fantastic! Everything you need to know when first stepping into the Eczema world is in there, lots of information and help in how to treat Eczema. This will help those coming into this blind and help the strain on the NHS even if just a little. As with the DVD there will be a pack of creams etc to start off with and see if it is a mild case or something a bit more is needed.
I am actually really proud to be a part of this and it wasn't just the dvd and pack that was mentioned but my Leigh support group was mentioned as well, and the Facebook group as all these including a website with a blog will be included. To say the least I was a little embarrassed but I know that the group needs to get out there and know and that I want to help more people and that it is needed in the community and beyond.
It is not fully finished yet but it will be soon and then it will be trialed out! Fingers crossed it gets the recognition it deserves! .
In other news.. there is no news ;) well no there is the general news we have now broken up for the Easter Holidays ( yes already!?) but i do think we have broken up early due to the fact Easter is so late and then it will clash with the May Bank holidays etc. As it is, they go back on the 23rd and May Bank holiday is the 5th. I'm not complaining, no early morning school run for two ish weeks! not much planned, wii games, dvd days visits to family will do!
Oh and a hospital visit to go to as well, taken long enough to get round to this! it was Last July when we last saw someone from the Drs and now we have blood work to do for her leg/ joint issues. The nut reaction we need to discuss and further tests i would like doing. If she will listen is another story! And not long after that we are back in Manchester to go over the blood results if they show anything. Again i fear we will be fobbed off with growing pain stories. Lets see what the month brings!
Saturday, 5 April 2014
Thursday, 20 March 2014
And just one more thing
Ever feel like just one more thing and you will snap? one more piece of straw will break the camels back?
Things seemed to be getting better regarding my daughter we had a nasty bout of skin infection which took a bit more then anti biotics to worse, it wasn't the worse spread infection we've had but it was getting worse, thankfully fucibet and anti biotics kicked it in the bum and we had a couple of days where her eczema calmed down a little, it didn't go completely but just wasn't full blown. Thing is, if it isn't this causing issues its something else, mysterious knee pains, joint pains, bone pains?! something now I know she likes to carry on but i know when she is putting it on. Tonight was no put on and she was in agony, she can't bloody bend her knee when its so bad. but there is nothing and no answers yet?. Because growing pains, don't get warm and neither do they swell up. Thankfully now we don't have too much longer to wait to see the ped's at Wigan. Though it's taken long enough to get there!
To add to the list of things, She had a full blown allergic reaction last week, not eczema wise, not asthma, eating a new type of cereal which had been bought special for her, she started to have a bowl when she told me her throat felt funny ( i must add here she says funny things like, her throat is sweet or she is "dying" for a drink but its never like this) she then started to itch at her ears, both sides, and I asked her what the matter was and she was just saying, they were itchy, no eczema, so i thought it was very odd. but I let her carry on her cereal. Well next thing I knew she was crying in pain over her eye, really rubbing it at and I had a look and nothing was there, getting concerned I asked other mums on fb for some advise and then gave her a anti histamine to try and calm her down. In the mean time looking up itchy ears etc realising she was having a full blown reaction!! Never ever had this before so que me feeling like crap for passing it off as nothing and her not having a clue what was going on. I pegged it down to the cereal and she had calmed down with the reaction after about 10-15 mins, though it took several hours for her eye to calm down.
Went to the drs, and we were told to avoid nuts and get some bloods done, took her after school and she didn't run away or scream the place down and was very brave ( does not happen often! ) and it was time to wait. One week later i ring the drs to see if they have returned to be told, yes they have and there was no further action needed. ERM?! pardon? did i make this reaction up? nothing has come up. Ok sigh lets try and see if we can figure out whats happened. Maybe i was playing it up all wrong or because she had rubbed her eye she made it that bad. resigned to the fact nothing had come up i asked for a drs appointment so we can have a chat. Today i went in just as i wanted to see the test results myself and or get a appointment closer, nothing except for on the day. Receptionist took a look at the results and went to see if she could print them off. Now she was gone a good 5-10 mins and when she came back she had been seeing the dr and something HAD come up. shock bloody horror! Now not a massive indicator but a mild one with possibly more ( it is ige levels and k/ul levels they look at through RAST, haven't a clue so don't ask) so since this had come up why the hell did i get told no further action? i could have very easily given her walnuts as i had made a home made carrot cake earlier this week, one with and one without walnuts! I am fuming!!
To say the least a complaint is going in and I am pulling the kids out of the practice atleast! thing is i still have to wait for this drs app with no indiction of what to do, I have had to ring up the community nurse team to talk to them about what to do! Been advised to keep away from nuts till we speak to the dr and that we might get a epi pen considering the reaction she did have.
Tonight she is covered in eczema, has serious knee pain and is well herself! wish something would give her a break, or actually us! some positive news or something to come along please. nice lottery win would be fantastic! lol. Would take us all away on a break, sod school fines! Because she bloody well deserves it!
Things seemed to be getting better regarding my daughter we had a nasty bout of skin infection which took a bit more then anti biotics to worse, it wasn't the worse spread infection we've had but it was getting worse, thankfully fucibet and anti biotics kicked it in the bum and we had a couple of days where her eczema calmed down a little, it didn't go completely but just wasn't full blown. Thing is, if it isn't this causing issues its something else, mysterious knee pains, joint pains, bone pains?! something now I know she likes to carry on but i know when she is putting it on. Tonight was no put on and she was in agony, she can't bloody bend her knee when its so bad. but there is nothing and no answers yet?. Because growing pains, don't get warm and neither do they swell up. Thankfully now we don't have too much longer to wait to see the ped's at Wigan. Though it's taken long enough to get there!
To add to the list of things, She had a full blown allergic reaction last week, not eczema wise, not asthma, eating a new type of cereal which had been bought special for her, she started to have a bowl when she told me her throat felt funny ( i must add here she says funny things like, her throat is sweet or she is "dying" for a drink but its never like this) she then started to itch at her ears, both sides, and I asked her what the matter was and she was just saying, they were itchy, no eczema, so i thought it was very odd. but I let her carry on her cereal. Well next thing I knew she was crying in pain over her eye, really rubbing it at and I had a look and nothing was there, getting concerned I asked other mums on fb for some advise and then gave her a anti histamine to try and calm her down. In the mean time looking up itchy ears etc realising she was having a full blown reaction!! Never ever had this before so que me feeling like crap for passing it off as nothing and her not having a clue what was going on. I pegged it down to the cereal and she had calmed down with the reaction after about 10-15 mins, though it took several hours for her eye to calm down.
Went to the drs, and we were told to avoid nuts and get some bloods done, took her after school and she didn't run away or scream the place down and was very brave ( does not happen often! ) and it was time to wait. One week later i ring the drs to see if they have returned to be told, yes they have and there was no further action needed. ERM?! pardon? did i make this reaction up? nothing has come up. Ok sigh lets try and see if we can figure out whats happened. Maybe i was playing it up all wrong or because she had rubbed her eye she made it that bad. resigned to the fact nothing had come up i asked for a drs appointment so we can have a chat. Today i went in just as i wanted to see the test results myself and or get a appointment closer, nothing except for on the day. Receptionist took a look at the results and went to see if she could print them off. Now she was gone a good 5-10 mins and when she came back she had been seeing the dr and something HAD come up. shock bloody horror! Now not a massive indicator but a mild one with possibly more ( it is ige levels and k/ul levels they look at through RAST, haven't a clue so don't ask) so since this had come up why the hell did i get told no further action? i could have very easily given her walnuts as i had made a home made carrot cake earlier this week, one with and one without walnuts! I am fuming!!
To say the least a complaint is going in and I am pulling the kids out of the practice atleast! thing is i still have to wait for this drs app with no indiction of what to do, I have had to ring up the community nurse team to talk to them about what to do! Been advised to keep away from nuts till we speak to the dr and that we might get a epi pen considering the reaction she did have.
Tonight she is covered in eczema, has serious knee pain and is well herself! wish something would give her a break, or actually us! some positive news or something to come along please. nice lottery win would be fantastic! lol. Would take us all away on a break, sod school fines! Because she bloody well deserves it!
Sunday, 23 February 2014
The power of shared troubles
I have come to realise this past week that running a support group is hard work on line, especially when people like to start arguments. Out there there are people suffering from something called topical steroid withdrawl and/ or red skin syndrome, which can cause some serious issues when it comes to stopping steroids or becoming to addicted to them. Most of these people go cold turkey stopping using the steroid creams all together! now personally i wouldn't want to do this as it looks like hell! though most in the situation would say there is no other way.
My problem with some of these people are that they come onto groups and start claiming that someone they haven't met has this problem or starts to scare people. Now I know there are issues with steroids, we know the risks and we are careful with what we do. I will not be told that I am harming my daughter as she is having no visible issues because of her steroids creams, she has no symptoms of these conditions so I take this advice like most with a pinch of salt.
On my own support group on facebook because I had, had enough of these conversations going round in circles and having what seems to be verbally abusive/ pushy people sometimes they are almost as bad as people selling miracles creams! I had one telling me I was a control freak! Hrm no I just don't want your advice forced down my throat!
My problem with some of these people are that they come onto groups and start claiming that someone they haven't met has this problem or starts to scare people. Now I know there are issues with steroids, we know the risks and we are careful with what we do. I will not be told that I am harming my daughter as she is having no visible issues because of her steroids creams, she has no symptoms of these conditions so I take this advice like most with a pinch of salt.
On my own support group on facebook because I had, had enough of these conversations going round in circles and having what seems to be verbally abusive/ pushy people sometimes they are almost as bad as people selling miracles creams! I had one telling me I was a control freak! Hrm no I just don't want your advice forced down my throat!
Anway! as we have had half term this week I asked to see if anyone wanted to do anything, This was a open invite on my own page and I have become friends with people from the group, some of the ladies wanted to come round! and it was so nice to finally be able to talk to someone face to face, one who suffers with the condition herself and one who's child suffers. It's the knowledge that they know how you feel, with all the doctors appointments, all the sleepless nights. No one truely knows what it is like dealing with severe eczema unless they are there themselves. I almost felt like crying when they had gone.
We are not alone! Don't get me wrong I know there are worse conditions out there, but these normally get more people to help out, financial help, support groups, councellors something! we get next to nothing! and its a fight to get that!
We are not alone! Don't get me wrong I know there are worse conditions out there, but these normally get more people to help out, financial help, support groups, councellors something! we get next to nothing! and its a fight to get that!
So my aim, this year, is to try and set up a support group in person, I should get some feedback tomorrow from someone in the National Eczema Society to set up a meeting and see if we can get anywhere!
I know its different trying to set up a group in person then on line. But i really feel this is something i need to do and can do. 6/7 years of this knowledge has to come in handy somewhere!!
Friday, 10 January 2014
Trying
Everything seems so hard at the moment. I wanted to get this new year off to a good start, find a job, get the house and things sorted and finally get on to things we want to do. Being promised call backs and hearing nothing is a blow. I know we create our own messes in life, but when trying to sort things out, pick ourselves up and make things better why does it all have to be a kick in the teeth?
Not that I want to go out and send the little man to nursery just yet, but needs must! though trying to find jobs working from home is a laugh, trying to find something around school is even worse, but my family work, i have asked about for child minders to see if any pick up from school and seem to come up with nothing.
I have been down the Avon route, and no one in the area is interested, or they do big orders then cancel on you. I have done so many online surveys recently they are annoying! There are the odd typing at home jobs on line. However! you have to pass obviously a lot of tests first and I have never done audio typing before now and doing the test, well I am not sure I am right for the job! I think I will have to find a cleaning job somewhere ( haha not like there are many of them around either! ) I would be better off trying to be a programmer!
On top of trying to find a job I have my poor daughter in pain, her eczema is so bad it looks like sun burn! her knee is causing her so much discomfort that it was even hurting this morning! I am pretty sure I will be told that it is growing pains still. But I can't wait till April for the Pediatric appointment to put a point across!
And this doesn't take more then an hour a day does it not? it is really infuriating me! I should be the one at home being able to take care of her, not facing the prospect of finding someone adequate enough to look after her needs!
Not that I want to go out and send the little man to nursery just yet, but needs must! though trying to find jobs working from home is a laugh, trying to find something around school is even worse, but my family work, i have asked about for child minders to see if any pick up from school and seem to come up with nothing.
I have been down the Avon route, and no one in the area is interested, or they do big orders then cancel on you. I have done so many online surveys recently they are annoying! There are the odd typing at home jobs on line. However! you have to pass obviously a lot of tests first and I have never done audio typing before now and doing the test, well I am not sure I am right for the job! I think I will have to find a cleaning job somewhere ( haha not like there are many of them around either! ) I would be better off trying to be a programmer!
On top of trying to find a job I have my poor daughter in pain, her eczema is so bad it looks like sun burn! her knee is causing her so much discomfort that it was even hurting this morning! I am pretty sure I will be told that it is growing pains still. But I can't wait till April for the Pediatric appointment to put a point across!
And this doesn't take more then an hour a day does it not? it is really infuriating me! I should be the one at home being able to take care of her, not facing the prospect of finding someone adequate enough to look after her needs!
Saturday, 4 January 2014
Wheat free child
Telling the 6 year old that is quite use to cake, bread, toast, crumpets, pasta etc etc that now we have to change her diet to wheat free to try and come to some conclusion or answer for her severe eczema has not been easy. At the same time we have had to stop any large quantaties of potato as I am almost certain she has an allergy, having flared horribly before with large amounts (chips for lunch mash for tea being large) and before Christmas she was feeling sick after a potato lunch and sick with just chips for tea. However once all up she was fine! And I mean fine. Now I know this is not conclusive but gut instinct here no matter if the pediatrician has never heard of it. Magic of the internet has and even the dietician even listened last time we saw her!
It is hard though trying to make her understand that we are trying to do this for her own good. I think there has been some improvement her skin is weak and breaks easy on the main issue points and is still dry but think for now we are getting somewhere.
The price is not cheap for these alternative foods not that I put a price on her health but unless we get her teasted as a celiac we won't get help. Thanks for that. Sometimes I wonder if people think I am making all these reactions up. Like I have nothing better to do. Well the new year can only bring answers... right?
Wednesday, 1 January 2014
2014
Well it's here 2014. Doesn't seem like a moment ago that we were bringing in the millennium let alone 14 years later. So much has happened in that time. I finished school, college and 2 years at university. Welcomed in 2 neices and 2 nephews as well as having 2 children of my own. Got married, had all my job experience so far. Seen my family grow with members and then in laws and also lost family and not in the general terms off loss, more like a severing of ways. Seems rather drastic to say but sometimes it is for the best and not to dwell on it though idlely I do.
Too many what ifs and unanswered questions. Friends have come and gone and like we all say we know who our friends really are. I just hope it stays that way or actually for old friends to make contact that would be nice. I have tried to build bridges but on deaf ears and too much trying sounds like pleading.
I hope to change for the better this year, loose weight, gain confidence, get a job (as needs must) I would love to go back to university if I can between a job and home life. Still fighting the eczema and allergy battle but we will get somewhere I hope. Answers, miracle cream something! Things might seem tough, but I know if we can pull together we will be okay. We have to be.
Sorry for the little reminisce and long time between posts but life took over for a time as it should. Love and light for 2014.
Thursday, 14 November 2013
you know when...
Things just seem to be going awry? nothing seems to really go your way or something just sets you off in a bad mood? I feels like one of those days today or rather one of those months! Today I just can't shake the bad mood feeling, the failure feeling, I want to get myself by the shoulders and give them a good shake but it wouldn't change things.
I would like some good news for a change, something to go in our favour, anything! don't care if its a lottery win or just something good!
I have mentioned previously how i hated form filling and that of a particular government form? well we got knocked back for our renewal which means two parts of our money were stopped. Which technically means we are down by a wage in the house. It's a lot of money that we are currently missing and with Christmas coming up all i can see is decorations and things for the family that I can't pick up and can't even bother to look at because there is no point. All of any extra money we have is being spent on the very tightly reigned food shop. Not that it is bad to reign ourselves in a bit but it was tight enough as it was! Our renewal was knocked back on the basis of the very vague report the gp sent in, late mind you i was hounding them over it and god i wished i hadn't bothered!! they didn't bother to get in touch with one of the main people my daughter sees, her dermatologist. I feel like taking people's heads and hitting it against a wall for all the aggrivation they have caused! So we are appealing the decision but need to get dermatologist to write a letter, she has and she's sent it.. has it arrived here??? nooooooo twice they've sent it out and no sign of the bloody thing! i've checked the address too. At this rate i will have to personally go and pick it up! and might send it on as a recorded delivery so i know it's got there! Royal mail are a total waste of space imo!
They (DLA) are telling us that our 6 year old girl can basically care for herself, so would you trust a child to put on cream to all over her body, hard to reach places etc and rub it in properly, steroid creams which are potent, inhalers, nasel spray, anti histamines, bandages when needed etc? hell i've been told some adults can't even handle their care and so they expect my daughter too and that it is no greater then any other 6 yr old. Erm... pardon? how many other 6 year olds are waking up in the night hysterical over leg/ joint pain, or are tearing at their skin trying to claw it off because it is itchy and not caring if it bleeds. I couldn't cope with that as an adult! It is alot of work and care that goes into her care not that i begrudge doing it but i don't have to do this much effort with the 21 month old! It's heart breaking! she suffers so much and yet she doesn't let on when it comes to things like this, yes if she falls over the world is ending but eczema itchy? not bothering her.
On top of all that her asthma has been plaguing her ! and after two weeks dr still says it is tight, winter is going to be a bug bear i think!
So on top of that the little boy has been ill for the last 5 weeks, firstly it was hand foot and mouth, straight after that he got a chesty cough that hasn't left him for 4 weeks, took him to the drs ( didn't want to be fobbed off before hand) and found out that he has tonsillitis ... thankfully he takes his anti biotics without much fuss! It is a bacterial infection and on top of that he has a viral infection, as he had a rash, was being sick etc. Then we have me who has been having problems for a while and got a phone call today asking me to go and speak to the dr who said that she wouldn't need to see me when i saw her on Saturday unless it was different... oh fab! and i have to wait for the news next Friday, nice way to spend hubbies week off work!!
Speaking of which there is an event on next Friday that he doesn't wish to speak about!! wish i could do more for it! not that he would let me and might try and see it as a normal day ... he wishes! heh.
There I think i might have got it all of my chest for the time being and don't have to keep explaining whats the matter. As well it's a lot of crap at the moment!! It's hard enough with the eczema but with the rest of it? well it's enough to make me want to go and cry. or eat the packet of biscuits down stairs! Either way ! over and out for today!
I would like some good news for a change, something to go in our favour, anything! don't care if its a lottery win or just something good!
I have mentioned previously how i hated form filling and that of a particular government form? well we got knocked back for our renewal which means two parts of our money were stopped. Which technically means we are down by a wage in the house. It's a lot of money that we are currently missing and with Christmas coming up all i can see is decorations and things for the family that I can't pick up and can't even bother to look at because there is no point. All of any extra money we have is being spent on the very tightly reigned food shop. Not that it is bad to reign ourselves in a bit but it was tight enough as it was! Our renewal was knocked back on the basis of the very vague report the gp sent in, late mind you i was hounding them over it and god i wished i hadn't bothered!! they didn't bother to get in touch with one of the main people my daughter sees, her dermatologist. I feel like taking people's heads and hitting it against a wall for all the aggrivation they have caused! So we are appealing the decision but need to get dermatologist to write a letter, she has and she's sent it.. has it arrived here??? nooooooo twice they've sent it out and no sign of the bloody thing! i've checked the address too. At this rate i will have to personally go and pick it up! and might send it on as a recorded delivery so i know it's got there! Royal mail are a total waste of space imo!
They (DLA) are telling us that our 6 year old girl can basically care for herself, so would you trust a child to put on cream to all over her body, hard to reach places etc and rub it in properly, steroid creams which are potent, inhalers, nasel spray, anti histamines, bandages when needed etc? hell i've been told some adults can't even handle their care and so they expect my daughter too and that it is no greater then any other 6 yr old. Erm... pardon? how many other 6 year olds are waking up in the night hysterical over leg/ joint pain, or are tearing at their skin trying to claw it off because it is itchy and not caring if it bleeds. I couldn't cope with that as an adult! It is alot of work and care that goes into her care not that i begrudge doing it but i don't have to do this much effort with the 21 month old! It's heart breaking! she suffers so much and yet she doesn't let on when it comes to things like this, yes if she falls over the world is ending but eczema itchy? not bothering her.
On top of all that her asthma has been plaguing her ! and after two weeks dr still says it is tight, winter is going to be a bug bear i think!
So on top of that the little boy has been ill for the last 5 weeks, firstly it was hand foot and mouth, straight after that he got a chesty cough that hasn't left him for 4 weeks, took him to the drs ( didn't want to be fobbed off before hand) and found out that he has tonsillitis ... thankfully he takes his anti biotics without much fuss! It is a bacterial infection and on top of that he has a viral infection, as he had a rash, was being sick etc. Then we have me who has been having problems for a while and got a phone call today asking me to go and speak to the dr who said that she wouldn't need to see me when i saw her on Saturday unless it was different... oh fab! and i have to wait for the news next Friday, nice way to spend hubbies week off work!!
Speaking of which there is an event on next Friday that he doesn't wish to speak about!! wish i could do more for it! not that he would let me and might try and see it as a normal day ... he wishes! heh.
There I think i might have got it all of my chest for the time being and don't have to keep explaining whats the matter. As well it's a lot of crap at the moment!! It's hard enough with the eczema but with the rest of it? well it's enough to make me want to go and cry. or eat the packet of biscuits down stairs! Either way ! over and out for today!
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