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! 

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! 

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!!

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!

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?

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.

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!

Mummy moments

Well another week has gone by and it is Saturday again!  swimming shopping the usual set out for today and the cleaning of a bus tomorrow ( don't ask!!)


Little man has a chesty cough with plenty phlegm to go around which is all coming out  now  must make sure i take lots of tissues with us today because yuk! not pleasant! We had a productive dermatology appointment last week which i forgot to mention. We got given a new nasal spray for all of daughters sniffing! and it has worked thankfully!  she still has black circles under her eyes but its better at least and her eczema is.. ok. Well as okay as it can be with her,  though picking is a pain as she has picked her head again grah!!!  i really wish she wouldn't. But least she has done it now and not earlier in the week when we had school pictures!! though her eczema on her neck was flaring. I will have to wait and see what the picture comes out like!

Have a few mummy moments this week:
Thomas being more aware of himself and telling me when hes done something in his nappy! well its one step towards potty training not that I am going to rush him, I don't plan to potty train him until he is past two !

Another moment, for those of you who don't know we are club members of Eddie Stobart trucks ( thanks to eldest.. and hubby :-p) and so we are quite happy to go looking out for the names. And even the little man is in on the act calling out "Bobart" when he sees one!  Sorry it's the cutest thing ever. Even sat on the couch at 6 am the other day with a little book of them he kept hitting my arm and going. " mummy, mummy... Bobart" pat pat on my arm. " mummy, mummy bobart!! car! (car transporter) " his speech is really coming along now and he is saying things more clearly! he might not  babble but he  does get us to understand what he wants.

Now for my super star,  my daughter is a good reader ( funny that this time last year she had only just begun to read) and now she has just gone onto lime stage books which are the top end of 7-8 year old books ! she has just jumped two stages again!  she is now on bigger books for school  and i do hope they don't expect her to read it three times! not sure  she could manage that just yet! Not sure I can keep up with her, i love reading myself but don't think i was this good so young. Then again dyslexic yada yada!

So proud of them both! I know little man is learning anyway but  he does take notice of what we say and takes it all in. And so i'll leave my mummy boasting there for now :)  even if her teacher playfully said my daughter was a genius lol. Scary ! hope she keeps this up

Seriously?

I dispair sometimes, the intelligence of humanity is bloody scary, or rather the lack of it!  I don't claim to be smart, not in the slightest, I have learning issues that do really bother me sometimes especially my memory and It is not something I can help.

But I try and read up what I can and get information on what I can, I don't boast to know everything but I think i know quite a bit when it comes to Eczema now and things. So much so i think about going into the field sometimes! but wishful thinking lol. But peoples lack of knowledge on the subject scares me, surely if your child has it you would go and look it up? see what people say? how they manage etc. Seems we are answering the same questions all the time.

But in the last couple of days I've found people don't even have the decency to read how to spell my name, Rachelle, look, not so hard its just a bit more then a Rachel but no I've had Rachel and then Rachael in the space of days and it drives me mad! Rachelle...Rashell (say as) not so hard is it? especially if you are reading it off a screen its not so hard to copy it!

Or being pointing out the obvious of things, well all i feel like typing is well Duh!! but i don't i restrain my fingers and don't type anything and so i've saved all my annoyed ness for here ...sorry!

I want to take some of these peoples shoulders and shake them. Oi pack it in, go and read up some things or go find the brain cell you are hiding because it is needed!!