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Winter is on it's Way

Staying warm

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#1 Robyn Sims

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Posted 20 March 2013 - 05:04 AM

It's been far too long since we had a post here at our Scleroderma Australia forum.

 

Try as I might to get people to use this wonderful forum I am not having a lot of success.

 

Just a reminder to all our friends, especially those in the Southern parts of Australia, to keep those layers of clothes ready for the months ahead.  Our weather changes so quickly.  Get those gloves ready and remember how quickly a Raynaud's attack can rear it's ugly head.

 

We havequite a busy few months ahead with seminars in Sydney and Perth this weekend, one in Melbourne on the Saturday the 4th of May and another in Brisbane later in May.

 

Will keep you posted on the date for Brisbane.

 

Cheers to all,

Robyn



#2 Joelf

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Posted 20 March 2013 - 12:59 PM

Hi Robyn,

 

Well, we're just approaching our spring and summer in the UK (not that you'd notice much difference!! :)) I've seen on our news how hot your summer has been and I think I'm right in saying that there was terrible rain in Melbourne over the weekend, so I can imagine how dramatically your weather does change, as you were saying in your post.

 

Here's hoping all our Australian friends are able to stay warm and as well as can be expected throughout the coming months!

 

Kind regards,


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#3 judyt

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Posted 20 March 2013 - 01:22 PM

Hi Robyn,

 

I have to agree with you about the scarcity of posts from this part of the globe, I don't know what the reason is but I suspect that in NZ it is to do with population.  There are just so few of us here and each one seems to working almost in isolation.   There are 3 support groups that I know about which are available on the internet and none of them are in Auckland which is puzzling since this city has the largest population.

 

I, personally keep in touch with Scleroderma NZ which is based in Wellington and Waikato in Hamilton but only on the net, no personal contact.

 

I notice that you in Australia have responded to Kirstin's predicament and I think that is great :yes: .

Best wishes

Judyt



#4 Helen

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Posted 03 April 2013 - 08:13 PM

Hi everyone

I just read about the scarcity of posts from Australia & NZ. Sorry, I usually only post when I have a big problem. Last one was toe ulcer which I still have 1 year later :( Not really looking forward to winter but as I live in Queensland it is not too bad.

Stay warm all

Helen



#5 Joelf

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Posted 03 April 2013 - 10:16 PM

Hi Helen,

 

How lovely to hear from you again!

 

Sorry that your toe ulcer is hanging around and still troubling you. I expect that you've tried most treatments, but I've included a link to our medical page on Treatments for Digital Ulcers to give you some more up to date information, which I hope you'll find helpful and interesting.

 

I hope that your winter in Queensland is as mild as possible!

 

Kind regards,


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#6 Robyn Sims

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Posted 03 April 2013 - 11:25 PM

Hi Helen,

 

No news is good news :you-rock:

Glad to hear that everything is going well for you.  Hope you get through the winter without any ulcers.

Kind regards,

Robyn



#7 Helen

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Posted 05 April 2013 - 03:43 PM

Yes Joelf, I have tried many things but willing to try anything. My main worry now is what type of shoe I can wear that will not hurt my toe. It wasn't a problem in summer but now that it is getting cool I will need to keep my feet warm. Might just have to wear socks.

Regards

Helen

#8 judyt

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Posted 05 April 2013 - 04:21 PM

Hi Helen,

 

Lovely to hear from you.   Yes it is getting a little colder here too.   Actually, it has started raining at long last, not right now but overnight the last couple of nights.   The first real rain we have had since mid-December really.   It has been lovely for those of us who feel the cold and I am not looking forward to it being colder.

 

However, we here in Auckland don't call Queensland cold!! at all but it really depends what one is used to.

 

When I had ulcers on my feet they were around the ankle and heel so I would wear scuff type shoes with no heels and that fixed the pain issue at least.   Depends which toe is bothering you of course but  would open toe shoes with socks or stockings do the trick?  

 

My ulcers were caused by Stasis Dermatitis which is a result of poor venous return and I blame that on the Sclero.   I have had shocking varicose veins since the Sclero started when I was in my 20's.   I have never had a pregnancy or a job which required me to stand all day so I have to blame my disease.   Fortunately I have discovered that wearing thigh high compression stockings does the trick of keeping my legs healthy and I haven't had an ulcer for 2 years now.

 

Only good thing about this whole issue is that the first person to suggest Scleroderma as being my problem was a young Professor at our City Hospital.   I was sent there by the ulcer nurses and had the good fortune to be seen by him.   No other reason but being in the right place at the right time.   His suggestion that I have CREST was soon backed up a few weeks later when I was an emergency admission vomiting blood.   Of course that highlighted my Oesophageal issues and here I am.

 

Good luck to you dealing with your ulcer, did you send it a Happy Anniversary card!!   Just kidding.

Best wishes

Judyt



#9 Helen

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Posted 05 April 2013 - 05:58 PM

Ha ha Judy, No maybe I should sent it an Unhappy Anniversary card...lol. It is on my second toe so shoes do hurt. I'll have to forget fashion and just go with comfort this winter. I went to Melbourne in October and it was the coldest they had in 40 years. I had aches I had never had before and was so glad to get home. I really don't know how people with this disease live in cold climates. I have always lived here so I am very sooky when it comes to the cold.

Good luck with winter, will be thinking of you.

Helen



#10 Amanda Thorpe

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Posted 13 April 2013 - 05:48 AM

Hello Helen

 

I have foot ulcers, now 2 years old, and stasis eczema, the ulcers are caused by scleroderma, the eczema by my immobility. Scleroderma causes my skin to break down and unfortunately this is also happening on the underside of both wrists. Doctors think that an ulcer here is how I ended up with a terrible case of cellulitis necessitating a 10 day stay in hospital for IV antibiotics. Let me tell you my hand, had to be the right one as I am right handed, was so painful I was actually disappointed when the doctor said no to surgery in case the incision didn't heal. I asked they cut if off instead.

 

Anyways the constant bandages on my feet mean I by shoes 2 sizes to big and as I use a wheelchair I don't walk much in the footwear so don't suffer any side effects from wearing such big footwear, assuming I would suffer side effects from it! I was going to suggest that you consider larger footwear and depending on how much walking you do, slippers/slipper boots. I have been out many times in both, you gotta do whatcha gotta do!  

 

My feet are covered in tight skin and have lost much of their padding and as I can't bend my ankles shoes with any sort of heel are out of the question so even pre ulcers I had to be selective with footwear. What I would not recommend are catalogues advertising "comfortable" footwear, designed especially to be a treat for your feet. Not only ugly but actually uncomfortable and overpriced, well I did order about 6 boxes of them. I found better in a high street shoe shop that had their own comfort range. I bought a pair of dark pink, patent sandals with velcro adjustable straps, not just at the ankle but also across the toes, for maximum comfort. They might be 2 sizes to big but they're pretty, pink and comfortable!

 

Tomorrow is supposed to be sunny and warm, warm and sunny tomorrow, tomorrow, sunny, warm...how many time do'ya think I have to write it to make it happen??

 

Take care.


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#11 Helen

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Posted 16 April 2013 - 04:22 PM

Hi Amanda

After hearing your problems mine don't seem so bad. I have also lost padding from under my feet. I do walk but when I go shopping I take a wheelie walker as it takes the weight off my feet and I can sit whenever I need to. I have to go shopping for shoes for winter so I will try the larger size and see if that helps. Thanks for the suggestion. It is good to talk to someone with similar problems.

Sending sunshine your way
Take care

Helen

#12 miocean

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Posted 16 April 2013 - 07:05 PM

I am sorry that those in the southern hemisphere will be putting away their sandals and flip flops and getting out their boots. I am thrilled to be back to warm weather as although I don't have ulcers, my feet don't do well in shoes. I gave up on even slight heels many years ago and would never order shoes without trying them on. I also have trouble getting my feet into boots as my ankles are not that flexible so they have to zipper up, not slide in. I found a brand that works well for me and I buy the ones that are flat soled and have a fur like lining. They are water resistant so that is a plus. I also buy a bigger size and bring heavy socks when I try them on.

The problem is when I need a dressy shoe in cold weather. I have given up on fashion and go for comfort.

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#13 Amanda Thorpe

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Posted 02 May 2013 - 03:46 PM

Hello Helen

 

Let us know when your ulcer goes and we can party! :woohoo: . Although I wish ulcers on nobody I did feel better hearing you still had an ulcer a year on, made me feel less alone somehow :emoticon-dont-know:  :emoticon-dont-know: . Yes, I know you're thinking you'd happily leave me to it! :lol:  :lol:

 

Take care.


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#14 judyt

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Posted 06 April 2014 - 02:36 PM

Hi Amanda,

How are your ulcers doing?? Or should I not ask??

 

I have been searching through posts to see if I can find one where I mentioned to you about a topical cream which aids healing of ulcerated skin, when I came across this thread.   I see I commented and it was May of last year.   Little did I know then that within the month I was going to start another ulcer :crying: and that nearly a year later I am still battling to get that ankle completely healed.   The first ulcer eventually healed but by then two more areas had broken down and right now I am still trying to get the third area healed and it just seems to be in an expansion mode.    I have not been discharged from the hospital ulcer clinic but am on a monthly review with them and I think I might be headed for a more intense round of weekly visits before long.

 

If only I could remember the name of the healing cream I mentioned to you I might be able to try it.

 

Hope your winter hasn't been too hard for you and that this summer will be along soon.

 

Judyt 



#15 Joelf

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Posted 06 April 2014 - 09:25 PM

Hi Judy,

 

I am sorry to hear that you're having more problems with ulcers that stubbornly refuse to heal; it must be so painful and debilitating. :(

 

Unfortunately, ulcers that don't heal properly do seem to be a feature of autoimmune diseases; thankfully, I've never experienced them on my fingers or toes, but did have a bout of ulcers in my mouth last year, which were really miserable.

 

I do hope the the ulcer clinic will be able to help and advise you.

 

Best wishes,


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