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KeiKei

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Hi KeiKei,

 

Oh dear, it sounds like you had a lot of fun from your MRE ordeal...not! I never had an MRE but I did have a bronchoscopy which caused me to have extreme head cold symptoms such as you've described. Thankfully it didn't cause a reaction in my stomach though.

 

My hands can feel very stiff and the nurses at The Royal Free Hospital did suggest using a hot wax basin to soften and make my hands more comfortable. I did do this a few times but quite honestly found it rather a palaver so I must admit I haven't pursued it perhaps as much as I should have done. They also gave me some very useful Hand exercises which are replicated in this link and I hope they'll be of some help to you.

 

I do hope you have a good appointment with your rheumatologist tomorrow and have an equally good result when you see your gastrointestinal consultant in September.

 

Roger Rabbit got it about right.....many a true word spoken in jest! ;) :lol:

 

:emoticons-group-hug:


Jo Frowde

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Hello KeiKei

 

Yikes! I had to look up what a Magnetic Resonance Elastography was a I had never heard of it. Amazing what they can do...as long as they never do it to me! :lol: My bi ventricular ICD is my passport out of the world of magnetic anything!

 

Take care and keep posting.


Amanda Thorpe

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Yeah -- that's the one! I keep looking it up but can never remember the next time someone asked me. D'oh!

 

I had to look up what a biventricular ICD was. I have to look up just about everything really!

 

Thanks for the link, Jo. I have tried some of them, and it's depressed me at how bad my hands have become. I paint and am finding it really hard to hold a brush lately. I haven't bothered to pick up my needle work yet.


"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

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Hi Loki.

 

Wow. As I'm sure I've written before, I'm not ill!!! :)

 

I have recently seen an Occupational Therapist, but didn't find it too helpful as a lot of my stresses in life revolve around my commuting halfway across the country each weekend and looking after my rather ill Multiple Sclerosis boyfriend. He's tried to slice off his finger today instead of slicing the bread <*sigh*> And I won't see him 'til Friday now to kiss his boo-boo better.

 

I have been advised to look at the UK disability living allowance, and it's been suggested I look at getting a cleaner, but quite frankly, the forms are over whelming and I'm not sure I'd be happy for some stranger to clean my house. (CONTROL FREAK!) Especially as we're still moving in (it's been a year already! Where'd the time go?!) There's also loads of DIY and unpacked boxes and therefore clutter. How'd we accumulate so much clutter?!?! We haven't even filled the forms out for the “oh so MS-sy one” yet, and he’s much much much worse than I am. (He’s only able to work part-time, 2 days a week). You need a degree in filling out those forms!

 

As for treatments, I'm not really on any serious medication/treatment, nor have I been offered any. I guess I don't need any, as everything internal has been given the all clear. I am however, soon to join those of the Royal Free! So they may pick up something that was overlooked by my local hospital. I think dinner and a theatre show might be the outcome of the day. Now, which show to see? I think I've seen most of them already. How'd that happen!?

 

Meanwhilst, I think I'll treat myself to a lovely two course meal of complan tonight. Yum yum...


"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

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Hello KeiKei

 

Ma used to help with my cleaning but it became better for our relationship if she did a little less so I now have a cleaner come in. I put it off for ages as I am at home all the time and didn't want a stranger in my home when I am still in it and in my PJ's at that! However, she is an absolute dreamboat, she comes in, cleans like a whirlwind and then goes, she comes once a week for 2 to 3 hours depending on what I need doing and is very reasonable and most importantly she is an excellent cleaner. I can't tell you what a weight off my shoulders it is.

 

I would encourage you to persevere with the application for disability living allowance, it includes a component for mobility and a component for care, so, for example your boyfriend would apply and then be awarded either the lower, middle or higher rate for mobility and care. The care component is based on how much A N Other (presumably you?) does for him each day, what it is, how long it takes each time and how many times a day. Obviously the mobility component is based on how well he can get around, what aids he needs and so forth.

 

Apparently you can apply online now, when I first applied in 2008 the form was 50 pages long but I was approved and awarded both mobility and care components and I recently updated my details and the award didn't change. Financially it makes a tremendous difference, it also makes a tremendous difference to me mentally as I don't feel so bad when I can't get our of bed because I am still bringing money into the household albeit a benefit. If your boyfriend was declined you won't be any worse off so you have nothing to loose. Just make sure his general practitioner/Consultant are on their toes so they wax lyrical about what he can't do when they are contacted.

 

Have a look at www.direct.gov.uk to see more information about benefits.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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