Hello!

Hello there!

I just wanted to introduce myself as this is my first blog entry.I'm in bed testing out my new iPad, which is very exciting!There is a little about me in my profile but I will write some more as the days pass.I have been diagnosed for about 15 years so am more than happy to support and listen,hopefully help if anyone is in need.And of course when things get tough I may call on you too!

In the meantime I hope today is a better day for you all than yesterday....

With love

Alex

X

28 Replies

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  • Hi!

    I'm also a new person on here, and I'm also on my iPad!

    Laura x

  • Hello Laura!

    It is lovely to meet you..how are you finding the iPad?It is much easier on my fingers than a keyboard,though figuring out email might be interesting!I shall go to bed with tea and chocolate to ponder on it ;)

    Alex xx

  • Hello!

    Nice to meet you too, I got mine at Christmas and I am now finding it great!

    Laura xx

  • Hello - and welcome! :-)

  • Hi Roamer!

    Thank you for the lovely welcome!Its great to meet you xx

  • Hello 'newbies'......I'm quite new to this blog too. Already I've had loads of help and suggestions for coping etc Hope you enjoy it...

  • Hi Bee!

    I'm so pleased you have found help!Finding new friends and support is just what the doctor ordered (as well as bed rest!)

    Hope you are doing ok today?

    Alex

    xxxxx

  • Hello, hope to hear from you again soon x

  • Hi Anteater!It is really good to meet you!The sun is shining here in Haslemere,how is your day?

    Alex

    xxxxx

  • Hi Alex, Ive had a pretty good day today although I'm really tired xx My sister does not live far from you shes in Liphook xx what a small world xx

  • Welcome to our fraternity.

  • Hi Zenabb!Thank you for the welcome,its good to be here..

    Alex

    xxxxxxx

  • I am at the Royal Free tomorrow morning if any one is also there do let me know! Love from Alex xx

  • Hi Alex,I'm not at the Royal Free tomorrow but have just had a long coversation with my GP about being referred there for a second opinion and hopefully better treatment than I've had so far at my local hospital-have you been going there for a long time?

    maybe we'll meet there soon love Yvonnex

  • Hi Salustro,

    I have been going to the Royal Free for about 16 years now and they have an excellent team xx You should do ok there and get the right treatment x

  • Hi Anteater,

    Thanks for your encouraging response.Its good to hear about the hospital from someone with first-hand experience .I know that this condition is different for everyone and as my GP said I still may not be happy but it's also an issue of respect as when I was seen yesterday the doctor did not appear at all interested in what I was telling him (about symptoms I was getting,pain I was in etc)He even examined a painful arm through my coat!! Unbelievable-You get the picture.

    I hope you're doing ok at the moment and keeping positive.Have a pleasant eveningxx

  • Thank you for the welcome, I too am in bed with new EE pad . I'm battling a bout of shingles so not moving a lot. I look forward to the support we can give each other. Thank you again.

  • good morning helion,sorry to hear about the shingles-you must be in a great deal of pain-hope you have a better day today and soon see some signs of improvement. best wishes Yvonnex

  • Hello Alex

    I hope you don't mind me writing to you on behalf of my Spuff ( Elspeth , whose middle name is Alexandra ). She has been mainly confined to bed for over a year. Previous to that she was either in the Great Outdoors or splashing away in a studio with her Artisan paints. Admittedly she had always been susceptible to arthritis for decades and things like easily sprained ankles. I'm trying to wean her on to the computer to communicate. i've got roomfuls of old IT junk that I have collected since I taught at FE using old BBC computers, IBM stuff and then on to Apple macs. But that stuff is no good to her. Are you finding your IPAD useful?. Spuff has been inspired by the recent David Hockney programmes on TV. She can't use her left hand at the moment but some function has returned to her right hand which was the first to go down in October 2010. She would love to be able to scrawl and then get her drawing skills and painting skills back again. I wondered if the IPAD was too limitting in terms of general comms eg emailing and Googling and whether she should have an Android based tablet eg Motorola Xoom. Sorry about the usual blokeish techno stuff.

    By the way, I used to teach Geography at O and A level in London and went down to the KIng's College Field Centre at Hazlemere, for training courses. Fabulous part of the country. Chalk grassland ecology on the South Downs if I remember. We're both retired, in the Forest of Dean, now.

    Best wishes

    Joe

  • Hi Joe!

    Its lovely to meet you both..

    This is all very valid as they are the questions I asked myself before getting one.I have one fused wrist and one about to be,so was worred that lack of that angle at the joint would mean I couldn't touch the screen in a easy pain free way.I asked a chum to come over with one and discovered that its is very easy to use the sides of my fingers rather than the pads.Does this make sense?

    Also the fact that is only needs such a light touch is wonderful,barely have to touch it,and you can 'flick a page' or enlarge an image or a painting to look at detail.There are absolutely wonderful art apps (one of which David Hockney used to to the latest work in his exhibition,I haven't yet downloaded one as I want to look at the reviews,But the choice is amazing,and you can make art using special 'pens' on the screen or fingers.The ipad is super quick surfing the net,reading,emailing.My requirements were basically to be able to Skype my family,email and write on blogs like this one,and some fun with the odd art or game app.So for me..perfect.

    I think thought the main thing for me with my body and being creative,I am most excited about becoming sociable again and creative and having fun instead of laying in bed or on the sofa feeling quite isolated or frustrated.What I also like is the ability to turn it on in a flash,quickly looking at something and turning it off...not having to tgurn on my computer..wait and sit at the desk getting sore knees etc.

    You know Joe if you are both managing pain etc well and in the car on a warm day you are very welcome to come over and let Spuff have a try with the Ipad?It def needs trying before buying as position of wrists and hands is the deal breaker.Let me know!

    I hope that long ramble helped a little!If Spuff and You would like to see some of my art is is on alexandramarler.com

    Lots of love to you both

    Alex

  • Hello Alex

    Thanks very much for your reply. It is very encouraging about the use of the Ipad. Spuff has set up her bed in the "parlour" so she can get a good view of the birds outside the picture window and the wildlife pond I am digging in the front lawn. I shall wheel one of my chunky, wire-strewn, boxes into her from my computer room so that she can look at your website and respond to you more directly. I think a little Ipad will be a more elegant solution.

    I hope things went well for you at the Royal Free Hospital. I know it is an important centre for Scleroderma research and treatment. We used to live in bedsits above a restaurant on Haverstock Hill for over a decade with only tennis courts between us and the Royal Free. I have set up a page on Flickr documenting the RA attack on spuff's hands at flickr.com/photos/spuffhands

    Spuff will get back to you soon,

    best wishes

    Joe

  • Hi Joe

    How are things with you and spiff? The photos of her in her studio are just lovely!Did you take down the pictures of the progression of joint disease?I found them so interesting and useful.Anyway she is beautiful!HOpe that some art is being made in whatever form..take care and best wishes to you both x

  • I typed Spuff but the iPad changed it! Oops! X

  • Hi Joe I hope you dont mind me commenting but Spuff's hand looks just like mine did when I was first ill 12 years ago. I have now lost all of my fingers and find life as I once knew it a huge struggle. I have Systemic Scleroderma and find myself isolated with very poor local medical care. I am starting to feel I now know more than my GP!

    With best wishes to you both

    Suzy xxx

  • Hi Alex

    Welcome to the club, lovely to have you. I do hope that you find us all helpful and supportive. Lovely day here today in Melton Mowbray, I used to live in East Grinstead, so kind of your neck of the woods, moved north to be near my daughter for support after losing legs. Its great to chat on here to like minded folk. Take care love sue x

  • Hi Sue!

    How are you doing this weekend?Thankyou for the lovely welcome.

    How lovely to be near your daughter,I don't know Melton Mowbray sadly...is it worth a visit? I love historical and interesting places.

    Take care

    Alex

    X

  • Hi Alex and indeed everyone else I suffer with raynaulds and ertythromelgia and since having hysterectomy the menopause too I was at the Royal Free hospital a couple of weeks ago for the first time and found them very helpful I have been booked in for my first ilprost infusion in may. We seem to have alot in common regarding being creative I love these things to and have recently taken up glass painting and I have the desire to paint again never been to any classes just enjoy it as long as no pressure with it. Years ago i did beauty and the beast on my kids walls. I have tried to set up support group in my area but so far no takers I live in Essex. I find it very helpful and heart warming that we can all support eachother as best we can .x

  • Hi Britty!

    How are you doing this weekend?

    It's lovely to meet you

    Love from Alex x

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