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Life on a Bed Options
jeanb
#41 Posted : Friday, February 11, 2011 6:37:58 PM Quote
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Ten green bottles, hanging.....no, no, no - sorry!
mel1
#42 Posted : Friday, February 11, 2011 6:43:25 PM Quote
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Hi Kathryn
Sorry to hear how you feel, it sounds similar to me at the moment. Just a thougt, I have had trouble with my Mtx for a year feeling sick for most of the week and mouth ulcers. I asked my rheumi and was advised to do the following, double my folic acid and take them, for example, on a friday eve then on sat eve take half of my MTX then on Sat eve the other half. I have to say it has worked a treat.
With regards to your symptoms it would seem to me that you should be trying an anti tnf or one of the other new drugs. I know that they have helped a lot of people deal with RA. So far I have not benefited but hope to try something else in the near future.
I would ask your hospital for some help
I hope I have been of some help
Take care
Love Melanie
fourmiles
#43 Posted : Monday, February 14, 2011 12:02:18 AM Quote
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Hi Kathryn (and hi to everyone else as I haven't posted before)

I just wanted to say I understand your worries about getting another dog. I am 48, I was diagnosed with RA in 1996 & it came on hard & fast. I had a 4 &6 year old & 2 dogs at the time. I had to think long & hard when it came to getting another dog around 5 years ago. In the end, not having a dog was not an option for me. We all end up having to give up things with RA, but I was not prepared for a dog to be one of them. We got a rescue border collie. My boys by that stage were old enough to help with the walking. I decided to go to dog training classes, the theory being I would then have a highly trained dog which would make life easier. I learnt a lot & border collies are easy to train, but he is a dog with issues!

My youngest went to university this year & it was always the plan at this point to get a scooter - haven't got around to it yet. For me it is not only walking, but also pulling on the lead hurts my arms. I have been scouring the internet for years for a good-looking scooter (I'm sorry, but I'm vain!), the best I can come up with are TGA - or course they also seem to be the most expensive. They also are the only ones I can find that have the option of a foot pedal - unless anyone else knows differently??

I don't regret getting another dog, & always hope to have one in the future. If you are worried have a look at applying for a guide dog for the blind that has failed to make the grade.

With regards to scooters, have you seen rentascoota.com? It gives you a chance to try before you buy. I tried to do this but the agent for my area seems to have gone awol & head office are not efficient about returning calls.

I also have to say that I too spend half my life in a bed. I felt guilty about it for years, but not any more. It's the only place I can get all my joints comfortable, I also have a mini internet research job, so I try to look upon the bed as my office!. I find that if I am able to factor in some rest time into the day, it makes everything else more manageable. Fatigue has always been a big issue for me, especially for 1/2 days after taking mxt (although don't take it any more). I was on Entanercept for 5/6 years & this for me was the drug which helped with fatigue the most, so like everyone else, I would recommend the anti-tnfs if you get the option.

Best wishes to one and all
Liz
Kathryn-H
#44 Posted : Monday, February 14, 2011 6:55:54 AM Quote
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Hi Melanie

Thanks for your reply. My rheumatologist rang me last week and suggested that I up my folic acid to from 2 to 4 times a week. I tried it and it seemed to work as I didn't get the mouth sores. I took it on the 2 days leading up to the MTX dose and the 2 days afterwards. This is really reassuring because, as he said, going on to the injections wasn't going to solve the mouth sore problem so at least that will still be an option for improving joint pain ... hopefully!

He also said that he's now got my NHS referral (I have been seeing him privately up until now) so I'm guessing that it means I will eventually be eligible for the other new drugs once I have worked my way up the waiting list and gone through the system. I was lucky to get diagnosed and treated quickly but it definitely has its disadvantages too such as no access to rheumatology nurses. I only went privately because of my husband's work health insurance.

Thanks again
Kathryn
x
Kathryn-H
#45 Posted : Monday, February 14, 2011 7:20:09 AM Quote
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Hi Liz

It sounds as if we have much in common!

I can well imagine that the pulling on your arm as being a painful part of dog walking. Our old dog was a heft labrador and it was only when he was on his last legs that he stopped pulling! Funnily enough, we were offered a border collie puppy last week and as I've always wanted one, it was very tempting. However I went to the Border Collie Rescue website and having read up about them, I was too scared! I'm a bit worried about getting a dog that's more intelligent than I am. The only people I know who have BCs are the most active family I've ever come across and that is definitely not how I'd describe myself right now.

I did look into adopting a retired guide dog (they're few and far between) but I didn't think of finding out about the failed ones. Something worth researching, I think. I'm glad you've got a job which allows you to lie on the bed. Sounds ideal. I write a lot (creatively) but it's never going to earn me a living, even if I do enjoy it. It also has the bonus that no one can really tell if you're busy in thought or just being lazy!

Those TGA scooters are much cooler looking than the ordinary ones, aren't they? I used to have a motorbike in my youth so maybe that's why they appeal to me so much. Rather expensive though. I think that when we book our holiday this year (probably Cornwall, I should think), I'll arrange to hire a scooter so that I can see what it's like. Perhaps I could hire a dog too?!

Thanks for all the dog and the scooter advice!

Kathryn
x
Kathleen-M
#46 Posted : Monday, February 14, 2011 7:56:48 PM Quote
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Hi Kathryn, my friend has a failed guide dog, he's fantastic. All the training is still there, such a gentle dog, loved by everyone.
The only problem is he won't let anyone else take him out except for her and her partner. Don't know if this is part of his training or just him.
Could be something to bear in mind.
Hope this doesn't put you off getting a dog, I would dearly love one but it's not to be just yet.
Take care Kathleen xx
jenni_b
#47 Posted : Monday, February 14, 2011 9:19:34 PM Quote
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I had a canine partner for a time.

anyone with a disabiling condition can apply

http://www.caninepartners.co.uk/

when I first looked I thought I wasnt disabled enough as could walk then etc. then when I got into it I thought I was too disabled!

they are not pets having said that.

they are working dogs so much more than that,

Jenni
xx
how to be a velvet bulldoser
fourmiles
#48 Posted : Monday, February 14, 2011 10:21:55 PM Quote
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Hi Kathryn

I have to say I have a soft spot for Border Collies and I love their intelligence. This is my 2nd, and from a RA point of view, within a few days I was able to teach him to go in/out rooms, up/down stairs ahead of me, so that even though he's a boistrous dog, I never worry about being knocked over. I know they are not for every one. They are very interactive dogs & can be a bit manic, but we quite like that.

I am a bit of a closet would-be-writer myself. I thought that now both my sons are at university & I have more time, I would give it another go. Have you ever submitted anything?

Liz.
fourmiles
#49 Posted : Monday, February 14, 2011 10:35:52 PM Quote
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Hi Jenni

Canninepartners looks very intersting. When you say they are not pets, were you told to treat the dog in a certain way? How helpful did you find it?

Thanks
Liz.
Kathryn-H
#50 Posted : Tuesday, February 15, 2011 1:21:48 PM Quote
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Hi Kathleen

Just yesterday, I emailed the guide dog people asking for information about adopting a failed guide dog so I'll wait to hear what comes back from that. That's just what I need, I nice, gentle one!

Kathryn
x
Kathryn-H
#51 Posted : Tuesday, February 15, 2011 1:24:41 PM Quote
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Hi Jenni

I followed your link to Canine Partners and it looks great! I really don't think I'm in as much need as the other people shown on the website but that's exactly what they say in their information about applying, that you never know until you ask. So I have! Thank you so much for that as I would never considered it in a million years.

Kathryn
x
Kathryn-H
#52 Posted : Tuesday, February 15, 2011 1:35:17 PM Quote
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Hi Liz

Glad to hear from a fellow writer! What sort of thing are you interested in writing about?

I only started writing regularly when I began my MA in Creative Writing and Personal Development at Sussex University. It was like a cross between writing for authorship and personal therapy at the same time. I also studied for a basic counselling qualification at the same time. During the MA, I did have some short stories published in anthologies. However, I now that I am at home with all the time in the world to write, I seem to be less successful. Rejection comes hard, I find, although apparently, it's all part of the writerly experience. I usually stick to short stories and poems. I have written one novel (a novella, really) but it needs rewriting and one day I'll get around to it.

I'm still attracted to the idea of a Border Collie but I'm sure I wouldn't be such an expert at training. Our old Labrador was 8 years old when we got him (16 when he died) and he came pretty much ready-trained. I'm following up on Jenni's idea about the Canine Partners though!

Kathryn
x
JulieM
#53 Posted : Tuesday, February 15, 2011 2:38:01 PM Quote
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Hi Kathryn, Border Collies are fabulously intelligent dogs but the reason i didn't get one was because of their never ending energy supply and i knew i wouldn't be able to keep up with him!

The dog we lost before Xmas was a retired ex racing greyhound. These dogs are ready trained to walk absolutely beautifully on a lead, are well used to being handled by trainers etc. and are big soft gentle elegant couch potatoes. they only enjoy a couple of short walks although if you have an enclosed area they do enjoy a run now and then. (Their recall is sometimes not wonderful, especially if they spy a small furry object which they have been trained to chase after!}

You have to choose carefully however as some are very strong and could easily pull you over. However we got a small greyhound called Little Bud and he was a delight-loved babies, children adults in fact everyone he met. His favourite things were eating and sleeping.
However if anyone was to consider one of these dogs I would STRONGLY advise you to choose one who is dog friendly, Bud wasn't and walks were NOT fun.


This is where we got Bud anyway- you might like to have a look.


TIA GREYHOUND & LURCHER RESCUE is an independent charity based in Sowerby, Halifax, West Yorkshire UK - dedicated to rehoming retired greyhounds since 1997.
www.tiagreyhounds.org.uk

The dog we have now (Jack in my avatar)we found in the Oldies Club-just Google it-he loves to snooze, sit on our laps for a stroke, eat, and go for a short walk. Perfect as he is older as we are!



YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
jeanb
#54 Posted : Tuesday, February 15, 2011 4:02:10 PM Quote
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Borders are the most amazing dogs. Steve has had and trained 5 in all, and they were all extremely intelligent. However, they do require lots of long walks! If you do decide to go for it, all the very best - I have to admit to pangs of envy!
Love Jeanxxxxx
jenni_b
#55 Posted : Tuesday, February 15, 2011 6:36:08 PM Quote
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fourmiles wrote:
Hi Jenni

Canninepartners looks very intersting. When you say they are not pets, were you told to treat the dog in a certain way? How helpful did you find it?

Thanks
Liz.


Hi liz, yes you are trained alongside the dog (who has already passed basic training) so they do days with you to try out all the commands then a supported short residential etc. there are certainly some rules you have to keep, keeping your dog stimulated with learning a new thing every so many months, giving the dog walks and resposibility for the dog is important. You pay a token of £1.

Once the dog is home you feed it and pay for it- you can get direct payments from the council to cover this.

basically, you develop a symbiotic relationship you do for the dog and dog does for you. you develop a very close relationship. They are expert at helping you work out ways of doing the above on the rougher days.

I loved my doggy but it was impossible to keep my side of the "bargain" with a baby in tow and so he went to another family with young children.

the dog chooses you.

they are all clicker trained so no shouting!

Jenni xx

PS I do some writing- www.wonkywarrior.blogspot.com

how to be a velvet bulldoser
Kathryn-H
#56 Posted : Wednesday, February 16, 2011 5:06:09 AM Quote
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Hi Jenni

Just visited your blog - great writing and very amusing!

I have neglected my blog. It's one of the things I've let slide since feeling fatigued recently. I really must do something with it again soon.

Kathryn
xx
fourmiles
#57 Posted : Wednesday, February 16, 2011 3:10:07 PM Quote
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Hi Kathryn

Good luck with the guide dog/caninepartners. I am glad you haven't given up on the idea. I find my pets very theraputic. I will be interested to hear how you get on as it is something I will probably look at myself next time around. Border collies pick up words very quickly, so are not hard to train, but I doubt I would be able to manage one next time unless it came fully trained first.

I am very impressed that you've had work published! I have only ever submitted twice, both pre-children & pre-RA & both to Mills & Boon, simply because they are always actively looking for unsolicited manuscripts and at the time it seemed like the easiest place to start - although of course it wasn't at all. But as I already have the start to a couple of M&B stories hidden away, my plan this year is to send off 3 chapters to them & to enter their competition in the autumn as it seems quite good for getting feedback, if only from other entrants. My ultimate goal would be to write a complex thriller, but I don't think I'm ready for that yet.

How well controlled is your RA? I am on rutiximab. I've just had the treatment for the 2nd time. It took 3/4 months to work last year, but they say it can be quicker 2nd time around.
fourmiles
#58 Posted : Wednesday, February 16, 2011 3:36:42 PM Quote
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Hi Jenni

Loved your blog. I have never really got to grips with the blogging scene and had no idea there was such good stuff out there - I have clearly been missing out.
It must have been hard having to give up your dog. I notice you have a cat. I also have 2.5 cats, all strays. The .5 is work in progress!
I read your post on another thread - sorry to hear you've had such a rough time, it must all just seem never-ending.
Thanks for the doggy info - I'm storing it up for the future.

Liz.
Kathryn-H
#59 Posted : Wednesday, February 16, 2011 4:04:40 PM Quote
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Hi Liz

Keep submitting, that's what writers are supposed to do, apparently! I read a quote somewhere recently that said 'If you're not getting rejections, then you're not a writer'. Some comfort!

My RA is poorly controlled at the moment. I've been on MTX at 25mg for over 2 years, tried Sulphasalazine and then Leflunomide with it but had to stop each of those so I'm just left with the MTX. Having been seeing the rheumatologist privately up until now, I'm now waiting for an NHS appointment so that I can move over to MTX injections to see if this helps. I got the appointment in the post today and it's for May so looks like a lot more moaning coming my family's way!

Kathryn
x
fourmiles
#60 Posted : Thursday, February 17, 2011 5:20:34 PM Quote
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Hi Kathryn

Sorry, I belatedly realised you had given all this info earlier - my memory is so useless.

When I was first diagnosed my husband had just started a new job & the new private health care had not been set up, so RA became a pre-existing condition. I have often wondered over the years if going privately would have been any difference, so it was interesting to hear that you have ended up going back onto the NHS anyway. Having said that, I'm extremely happy with the treatment I get.

Sorry to hear you have to wait until May. That's a long time when you are feeling rough. At the risk of repeating what's been said before, do ask about anti-tnfs. It sounds as if you would qualify. They made such a difference for me, and a lot of people seem to do well on them.

Liz
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