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Thursday, February 19, 2015

Sad status update will stay at the top until I find a solution please scroll for new pics

Okay Sad status update: Its all gone wrong since January.
Many of you know I have a genetic condition, EDS. Many of you know that I struggle with this condition, and its many and varied effects, eg: Dislocation of Vocal chords, Tearing of the Hyaline cartilage between the ribs causing my ribs to be in 6 seperate pieces, etc.
Well unfortunatly this next manifestation of my EDS means that I am no longer able to spend more than 30 mins per day looking at any type of web page. My EDs has now affected my sight, the muscles adjusting my vision are not responding after 30 mins, and the difference between wearing glasses and not wearing Glasses at this point is negligable. This affects my ability to drive, read, watch tv, everything especially being Shortsighted!
So having had confirmation from the GP that the steps we tried are not working I am having to withdraw from a lot of online activities.
No Games, No blogs, no competitions, limited access to forums and groups.
I have to preserve my vision for things like emails, and shopping. And go back to relying on hubby being able to drive most of the time as I dont trust my eyesight. Or until the kids pass their Driving Tests and can come with me, and swap over if my eyesight goes.
Until some smarty pants out there comes up with a working soloution to my various EDS manifestations (Pretty Please God, I wouldn't mind if someone came up with something!!)
I am still going to craft, but all you will recieve from me now are pictures, no details on how I did it, sorry but I cant affford to loose the little response I have left in my vision. I try to keep up by my mobile, easier as its not so white based, which is the area of concern, so will keep in touch via FB, but all else has to go, xxx

Thursday, March 27, 2014

My Craft Studi, Crafting.co.uk Warning

Word of warning to any and all customers of My Craft Studio, Crafting.co.uk:
 Make sure you chase your order up as soon as possible! I placed an order for in stock items on the 12th March, and paid for it. I even had to do most of it via the phone as it had been a while since I ordered, so they even had the opportunity to tell me that items were out of stock in person at the time of ordering. Nothing was said at all about items being out of stock. So sit here waiting for the items hubby was buying me for my birthday to arrive, until the 24th of this month. 24th I phoned up to be told that due to staff sickness and large volumes of orders that my order would be picked and packed that day or the next. Today, 26th, phoned up, and was asked what I had been told on monday (Huh? you dont know what you said? And yes it was the same person, and the same person who had helped me reset my password for the site) so repeated the conversation back to her, and was then informed that 2 of the items were out of stock, and would be another 2 weeks until they are back in stock again, but would send the other 2 parts to the order out now, and would I like a refund on the out of stock items?
So in other words, they had taken my money 2 weeks ago, and shoved me to the back of the queue, giving the items I had ordered to other customers AFTER I had paid for them!
Its taken me some time to go back to MCS and re-order items from them, once this last part of the order has arrived, well I wont be ordering again, and I suspect that this comment will mean I am black listed if I do ever decide to order again from them, and wouldn't be surprised if they dont refund my whole order immediately!


Fortunately I posted this on FB yesterday, and there are now at least 4 others that I am aware of that have had EXACTLY the same happen to them, so its not just an isolated incident, so if you are waiting on an order then phone up and check that its complete and on its way.
Also they eventually posted on fb that due to the delays they are offering a 10% discount as an apology, but they haven't offered it to any of their affected customers via email, let alone informed customers about any delays to their orders!

Tuesday, December 10, 2013

I nearly had to give up crafting....Due to My Benign Essential tremor

some of you may have caught some of this on FB.........
So I had better explain hadnt I?
Okay, well some of you know I have EDS, Ehlers-Danlos Syndrome III, in most cases it is non-life threatening, except for the odd one or two of us, yeah okay I caught the life threatening part, and NO this is not a sob story, or a plea for pity!
I have EDS, a connective tissue disorder which means that my tendons ligaments, muscles and skin is too stretchy. Things arent held in place as well as normal people. I dislocate parts of me very easily, and my muscles arent always doing their proper jobs, which means that they work harder to do the wrong job, than they would if they did the right job!  I dont like taking tablets, I cut down as far as I can, I wont use morphine but I use coping and distraction mechanisms, I really dont like tablets, and I also forget to take them a lot, especially in the mornings!
Its not something I "developed", its a genetic issue, (boy did I fall on the wrong side of the scale for genetic issues!) Mum had it, Dad Has it, I got double dosage, while my brother only got one!( Wimp!)
As a result of my EDS I developed osteo arthritis at a very early age, and due to the damage to my spine by the arthritis I developed an Benign exacerbated Essential Tremor. Basically think of an engine running smoothly, thats an undamaged spinal chord, mine is like the most badly tuned engine in existence, constantly mis-firing, (causing the Bang you suddenly hear as a car goes past) and causing my nerves to Mis-fire and jerk my body randomly. It started in my legs, and I got rushed to hospital having fallen while crossing the road to get to the GP's to see him about this sudden wobbliness of my legs. Now its all over my body. I am 45.
 I take a medicine for my Tremor, and if you know someone who has a tremor then you need to make sure that they know there's a medicine for it! Believe me it makes all the difference in the world!
How do I know, well firstly I take the medicine myself and know that there is a massive difference in what I am able to do with the medicine, and secondly, I spotted a woman on the bus some years ago, who had a tremor, luckily she got off at the same stop as me, and she must have been in her early 50's, I stopped her and spoke to her and explained about the medicine, (once she got over the sheer embarrassment of being stopped for her tremor that is!) you should have seen her face light up! About half an hour later, I passed her again, and she dragged her son over to meet me, take notes, and find out more about it.
You see a Tremor is embarrassing, especially at a young age, no offence but if you are knocking on the doors of 80-90 then fair do's we expect it, but we dont expect it from people who arent that old in reality do we?
It can also affect your self esteem, I know that the poor woman was uncomfortable being on a crowded bus, being seen like that by people she didnt know, with kids and teenagers and older staring at her.
I know it affected her home life, she will have spilt things all the time, she wouldnt have been able to do a lot of things you think normal, she wouldnt have been able to apply make-up for herself, hold a book steady to read it, it would have to be on something instead of her hands.
So you might not see much of people who have a tremor, we tend to try to hide away and not let others see us, we dont really talk about it.
Now I am a crafter amongst other things. I am a mother, a Grandmother, someone people come to ask questions of, a cook, a listener. I enjoy the internet, and games, reading, crafting, going out, all the things you do however.................
Ten days ago, right before an old school friend came to stay, I had a phone call from my Pharmacist, my Tremor medication had been discontinued.
What? What does that mean?
Well they dont make it any more.
But surely theres an alternative?
Well you'll have to speak to your GP........
so 4 phone calls to the GP later, and today I found out that there is NO other alternative medication for a tremor.
I would have to use my remaining supply to wean myself of the tablets, and revert to full Tremor mode.
After several hours of sitting here, considering everything that would be lost to me without the medication, grieving for my life that was, I posted on Facebook :
To the Powers that be that USED to make Primadone: Mysoline
I would like to thank you for returning me to a state where I wont be able to have a hot drink or hot food. I would like to thank you for completely confining me to the house by making me unable to drive. I would like to thank you for making me ashamed to go out in public. I would like to thank you for making me unable to hold my hands steady enough to craft. I would like to thank you for making me unable to hold a book steady enough to read. I would like to thank you for massively increasing the wash load from spilt food and drink. I would like to thank you for destroying my LIFE!
I have EDS, as a result I have Arthritis of the Spine, which causes the nerves to mis-fire in the spinal chord. I am 45 and have an Essential Tremor due to the damage to the Spine. I do not do drugs or Alcohol. The ONLY treatment for this was Primidone, so thank you so very much Mysoline!
Please share this information, I am not asking for pity or sympathy, I dont want it, what I want is a treatment for an Essential Tremor!
The only other way to stop my Tremor is believe it or not.......Alcohol, yet I cant see the government paying for me to be an alcoholic to stop the Tremor can you? And not that I actually enjoy being drunk in all honesty!


I then sat and cried my eyes out. You see I know what its like before the tablets, I know the embarrassment of having major tremor attacks in public, even in A&E they rush you through! I know the spilling, and scalding, I know that I am unable to drive like that, that I dont want to be seen like that, its bad enough now on crutches for as long as I can bear it, before having to resort to full wheelchair status as I was informed I would be by the time I was 35, did I say I'm 45? I fight to be me every day of my life,  to maintain mobility, to maintain my independence, to continue to craft, yet to take away the medication that reduces the Tremor to a manageable level would have taken all my Soul with it.
I would be stuck inside an Pain filled un co-operating body with no Coping strategies
I gave up cake decorating, and calligraphy years ago because of the tremor, but to be unable to get the body to co-operate long enough to put a dab of glue on a piece of paper would have been the end of me.
And thats what the tablets mean to me, LIFE. Now I'm not saying that the Tremor is totally controlled by this tablet, as it isnt. I still have my moments, and triggers, and actually I look forward to a tremor Attack sometimes, as its the only time I am totally pain free! It overloads my nervous system, and blocks the pain triggers for a few hours, I might be physically exhausted by the attack, but for a couple of hours, no pain! Then I can get the painkillers in BEFORE the pain comes back again, but it is generally a result of injuring myself that triggers the attack! Slipped disk? No problem, I then promptly had a tremor attack, and overloaded the nervous system so didnt feel the pain from it for another 3 hours, sometimes it works for me instead of against me.
I was very lucky today, It turns out that Primidone IS still available. The company that made it ceased production, and passed it to another company, Audley Mackenzie, it was showing as discontinued on the SERB ordering system, and hadnt hit the Audley Mackenzie system in the meantime.
Some very kind lady on FB sent me a link where I could trace the Primidone down. I frantically started making phone calls, I bawled down the phone at this poor receptionist at Audley Mackenzie, dislocating my vocal chords in the process, (Yes thats the life threatening bit) and she gave me all the details I needed for my pharmacist to track the tablets down.
Then I phoned my phramacist, bless him at just gone 5.30 pm! He had actually ordered it that morning as he had spotted it on the system! He was sitting there waiting for them to arrive there and then! He hadnt told me about it as he wanted to make sure that a) He could get them, and b) they were the right tablet. 
For 10 days I havent crafted. I havent interacted with anyone really. Because of the worry that not having this tablet caused. I havent even spoken to FG, who I am sure is very upset with me by now, for my total silence. I didnt even post my challenge for Krafty Hands, I didnt think I would ever craft again. And I couldnt talk to anyone either, I have been hidden away since Lucy went home, on the computer trying not to think, but still thinking............... 
So if you know anyone who has a Tremor, tell them that there's a tablet that can help reduce the tremor, please, its not a cure, but it helps, massively
Thank you for reading, and hopefully some of this information will be of use to someone out there. If a member of your family has a tremor, there is a tablet that can reduce the effects, that can allow you to function more as you were in the past, but you need to speak to your GP, or Neurologist, but know that there is ONE thing out there to help, and hope it doesnt vanish!

Lou

Friday, November 15, 2013

Getting to that time of the month....

Well the 19th of this month sees Kraftyhands returning to the screen with some old and new stock.
So its about time I started showing a few of my new creations...........
My reason for not blogging is that I'm setting up an online shop, and I dont really like to post about cards which are to be given to others really, I dont think its fair that strangers get to see the card before the recipient.
So hopefully you will understand my silence.
But here's one that's for TV! In other words, one I am happy to blog about!
Sympathy cards are hard to make, give and recieve. But it comes to us all, and as humans, and some animals, we need to be supported in our loss and for most of us we use a Card.
As I sit here writing this it's actually my husbands birthday, a day he shared with Karen across the road, who died of Cancer 3 years ago. A day I always Remember Karen, and her gentle spirit, so posting this card for me is quite apt, as I still miss her presence. I was touched the other day when Pintrest told me someone had pinned one of my Cards, It was actually My Sympathy Card for Karen, to the person who pinned it, Thank You, xx.
Sympathy Cards are hard to do, and as Card makers its the less pleasurable side of card making, something that takes thought, consideration, restraint.
But occasionally a resource comes along that helps, and such is the CD In Sympathy By Kraftyhands, restrained, thoughtful verses, gentle, hopeful images.

The Tag and Backing paper are from the CD, the cut file I made using the flourish from the Tag.
I chose to do this style, as I find it hard to do Sympathy cards for people I dont know. When I do a Sympathy card it needs to be simple and elegant, and this Tag and paper were my choice.
The Flourish on this tag inspired me to take the card further, Its beautiful, intricate like life.  So I Imported the pdf into MTC and pixel traced it to get the flourish on the tag. Then made a frame linking 4 of the flourishes and a separate mat mat of 2 linked flourishes. It was cut on the Zing, from Anna Maries Chocolate card stock.
An 8 inch scalloped card base, a chocolate matt, the backing paper with a grey organza ribbon and bow, the two layered flourishes, and then the tag. Inside it has one of the verse toppers on insert paper.
A beautiful elegant Sympathy card.

hugs

Lou

Saturday, November 02, 2013

Finally!

Well its been a while hasnt it?
Unfortunately I am now on my 6 th printer within 11 months, can you tell I'm not impressed so far? The last one started turning up its toes, just after the samples were done for the Craft Nouveau CD, and then went and died, deceased, pushing up the daisies, etc.
So printer number 6 is here, and had a rough introduction to my craft room, with a mass stack of printing as soon as it was plugged in,
First out of the printer was my Challenge card for Kraftyhands:  Santa's Little Helpers, a beautiful CD and one of my all time favourites.
Now this month the challenge is JUST FOR FUN, there is NO PRIZE! and the theme for the challenge is Classic Christmas ( Red, Gold, and Green).
Now the set I have used is intended for a 5x5 or 6x6 card, well I disagree, and Mine is 8x8, lol, and is just 2 sheets from the cd, a backing paper from the cd, card stock, and die cuts:



I created an 8x8 card base in forest green cardstock, and then cut diagonally across the card front. Then I started cutting all the mats and layers for the card, 1 base mat from Gold, embossed with the Embossilicious holly folder, one from red, then 2 from Green gloss card, One piece of Gold Linen textured paper, and 2 from the red Merry Christmas backing paper. And finally the main image and the backing that goes with it.
But if you've looked at the photo's and read this far your busy saying to yourself, "erm , hold on a minute you havent said about all the gold layers, or the other green layer?"
No I havent, because they are not layers. Although this card looks lavish, the gold layers were created using a gold paint pen on the edge of every layer. I cheated in other words!
So , having cheated, and saved a huge amount of Gold mirri for next time, I started to position all the layers.
The inside: I used the insert panel, and the gift tag  together for the sentiment.
The outside, I obeyed the rule of thirds, and aimed for the right hand corner of the card front, leaving the left hand bottom corner free. the backing card and topper base are the same size so I offset them on top of the Gold Linen.
I then did the decoupage, and managed to get loads of dimension by folding the presents on the edges of the parcels, some 3D glaze on the eyes to bring them to life, and some clear glitter on the snow. Add the slim ribbon at the base of the card
The I added some die cuts, Spellbinders Christmas Lights border die, and a freebie little tree from Papercrafting Inspiration magazine. The snowflakes were punched from the Gold linen paper with a Martha Stewart punch. Finally some pearl gems to finish off,
and a nice big statement card, without all the weight and layers!
Right no prize this month, its just for fun, so do pop over to the challenge blog, have a look at what my Teamies have done, and join in, but remember the theme, Classic Christmas, using Red, Gold and Green.

Hugs

Lou