Author Topic: Disappointing news  (Read 3870 times)

ditchdwellers

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Disappointing news
« on: 29 Jul 2015 12:54PM »
 I had a letter yesterday from my dermatologist saying his application for me to receive Infliximab treatment for Hidradenitis has been refused for the second time. As it's an unlicensed treatment which is ridiculously expensive  he had to apply to the CCG for permission. It wasn't deigned to be 'exceptional' enough for them to give the go ahead.
I'm disappointed because it was my last hope for putting this into remission,  although I have to admit that part of me is relieved as the treatment can leave you with horrible side effects.
So it looks as if I'm back to just getting on with it.  I'm disappointed as it means I can't go swimming or to hydrotherapy when I've got active abscesses, which is most of the time.  So my EDS suffers because I can't be as active as I would like. Ho hum, I guess I'll just have to try and make the most of things. 
Sorry, I just needed to moan!  :-(

NeuralgicNeurotic

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Re: Disappointing news
« Reply #1 on: 29 Jul 2015 05:03PM »
 >hugs<

Dic Penderyn

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Re: Disappointing news
« Reply #2 on: 29 Jul 2015 08:27PM »
No need to apologise please feel free to moan as much as you want let it out it's cathartic.

 >hugs<
Be careful in what you wish for, God has a sense of humour

Yvette

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Re: Disappointing news
« Reply #3 on: 29 Jul 2015 08:58PM »
How disappointing.   :-(

Fiz

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Re: Disappointing news
« Reply #4 on: 30 Jul 2015 04:46AM »
 >hugs<

ditchdwellers

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Re: Disappointing news
« Reply #5 on: 30 Jul 2015 12:43PM »
 One of the things I love about this board is that I can moan about stuff and nobody minds!
Thanks for being so understanding. It makes such a difference to have somewhere safe to express how I feel  >bighugs<

auntieCtheM

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Re: Disappointing news
« Reply #6 on: 30 Jul 2015 07:28PM »
Oh Dear.  Is there another sort of exercise you might be able to do that is not water-based.  Like pilartes or yoga?

ditchdwellers

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Re: Disappointing news
« Reply #7 on: 30 Jul 2015 08:41PM »
I have problems with pilates and yoga in that I find it very difficult to get up from the floor.  Also I can't put very much weight through my wrists and it's impossible for me to kneel without dislocating anything.
The water exercises are so much better for me although the getting dressed and undressed presents another set of issues!
The older I get the more complicated things seem to get  >erm<

Fiz

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Re: Disappointing news
« Reply #8 on: 30 Jul 2015 09:06PM »
I have real problems with Pilates too. The degenerative disc disease in my spine means my lower back doesn't bend, and what small movements it does do are painful. I've learnt to adapt some exercises so I'm doing my own thing but am actually working the same muscles as the rest of the class but other times I can't think of an adaption so feel a but lost.  It was recommended for me though because it works on posture and balance which if good, they protect all your joints and as I'm orthopaedically dodgy that can only be a good thing. My balance is really not good.

Hurtyback

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Re: Disappointing news
« Reply #9 on: 30 Jul 2015 10:15PM »
dd  >hugs<  no wonder you are disappointed!

auntieCtheM

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Re: Disappointing news
« Reply #10 on: 31 Jul 2015 12:34AM »
I've been doing what turned out to be pilates.  My teacher adapts the exercises for anyone who needs it.  There is one lady who does everything sitting in a chair, for example.  For the less fit ones she changes what she wants us to do.

Otter

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Re: Disappointing news
« Reply #11 on: 31 Jul 2015 04:10PM »
 >bighugs<

Fiz

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Re: Disappointing news
« Reply #12 on: 31 Jul 2015 06:48PM »
That's good auntie. I think I wouldn't feel so bad if others were doing things differently too, everyone else in the class seems to be super flexible or double jointed or something! 

ditchdwellers

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Re: Disappointing news
« Reply #13 on: 31 Jul 2015 06:50PM »
I know what you mean, Fiz! I don't like to feel 'special'.
Perhaps it's just a case of finding the right course.

auntieCtheM

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Re: Disappointing news
« Reply #14 on: 31 Jul 2015 07:23PM »
and the right teacher.  Unfortunately my pilates teacher has a child so she takes school holidays off.  I've done no exercise for weeks now and I can really feel it.  I do not have the self-control to do the exercises on my own.