Comments | captain91: RSD big update

captain91

RSD big update

Sep 16, 2009 09:41

Erm hi *waves*

Well I know I don’t use my blog for much (I hope that’ll change soon though), and don’t know if anyone actually reads this, but I had to write this up.

As some of you will know I have a condition called Reflex Sympathetic Dystrophy (RSD) that has been increasingly debilitating for me over the last six years, leaving me ( Read more... )

rsd, remission, health, life

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doctorsdiva September 16 2009, 10:21:58 UTC

Wow that is amazing and scary all at the same time. Your condition sounds painful and debilitating so any respite must seem like a miracle. I think you should probably check this out with your doctor (and yes I did have to go back and take out the capital D :S) just to be sure nothing else is going on and then enjoy it whilst you have it. I know it must be very frightening not knowing when it may return but you would be cross if you spent hours, days, weeks or even months thinking about that rather than enjoying the freedom from pain. Well that's what I think. Look after yourself honey and I have everything crossed that this is the remission you deserve.
*divahugs*

captain91 September 16 2009, 13:36:29 UTC

wish the could find the Doctor, get him to do soem jiggery pokery so it stays gone, but i don't think that'll happen!

i agree on the doctor front, the main problem is we have such a poor health team. our gp only just learnt about rsd when she joined the practise, and my consultant is about as much us as a chocolate fireguard! i haven't seen her in probably three years as she doens't do home visits.

doctorsdiva September 16 2009, 18:24:49 UTC

Do you have a social worker? If not it might be worth ringing your local Social Services Adult Disability Team (I know, labels?!! grrr :S) and ask for help from them - they might be able to arrange input from OT's and perhaps help with getting you to the doctor or the hospital - you have a right to see your specialist - don't let them fob you off - this needs looking into so you can get started on turning John Barrowman (good luck with that by the way - pink porkers with wings come to mind hee :D)

*divahugs*

captain91 September 17 2009, 09:13:20 UTC

we had a social worker but she left a few months ago (no loss in my opinion since she though she was above every one else and though sending me into residentail care wpould be the best route ( ... )

doctorsdiva September 17 2009, 15:08:36 UTC

Sounds like you've been let down all over the shop. You and your parent(s) need to be really firm with Social Services don't be afraid to make a complaint, they have a statutory responsibility to you as a child and if there is a gap between them and the adult team they should fill it!! Talk to your CAB or I found this group on line http://www.disability-cambridgeshire.org.uk/ who might be a good first point of contact ( ... )

captain91 September 17 2009, 17:15:26 UTC

thanks for all this hun, i appreciate it. i can only say i'm glad i'm not he the one filling in the endless forms - have you seen the size of a disibility allowance form?!

and according to my mother i'm good at complaining so we shouldn't have a problem there!

i think that cough might need a Doctor though! um, 9/rose medical care for one of them degenerates

doctorsdiva September 17 2009, 17:25:23 UTC

I'll make a call to see if the Doctor is in ;)

Exactly when would you like this prescrpition to be filled - a months time was it???

*divahugs*

captain91 September 17 2009, 17:40:01 UTC

the date on the back is october 21st

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