Hi
 

Hi everyone,

How are you all doing? Sorry I haven't really been around - RSD can end up taking up so much of life that you can't bear to think about it/ talk about it etc. I had a major flare up and it's taken me a while to get back control of my body, mind and life! The recovery and climb back up from my flare up has been far longer and deeper than normal.

I now have an assistance dog in training, Edgar who is fantastic. James bought me Edgar for my birthday and to try and get me interested in life again. (Being stuck in bed and not seeing anyone but James, Mum, my sister and my carer really stuck me in a rut especially being stuck needing darkness and silence - at uni my friends would give me a break when I was in a severe flare and as soon as I was well enough to have someone else in the room they were there forcing me to get on with living - even if it had to be living from bed for a bit! But whatever. I don't remember much from flare up time but I'm now back to sitting up in my wheelchair and trying to finish Christmas shopping with James.

Edgar is a 14 week old black lab/ alsation cross and is so lovely - he's really given me the will back to keep fighting this. I didn't realise how low I had got with the flare up etc until I started fighting to get back to being "me" and I'm just about starting to feel human again. He is being trained alongside me instead of coming from a service dog centre - we had talked alot about how to get a service dog and eventually decided to train one from scratch with a charity - Dog Aid, and a dog trainer who has offered her services for free. I will still require carers when Edgar is fully trained, but, during good patches I am hoping I can be left on my own with Edgar and just have some more freedom. So fingers crossed Edgar continues to make the grade (as the puppies grow up it sometimes becomes clear they are not suited to service dog training - I would hate that to happen with Edgar, but, if that happens then James and I will have a fantastic family dog and can look at going through different channels next time).

I have been referred for the DBS - one neurosurgeon has refused so far as he considers my condition too complex and isn't comfortable with the lack of medical support. This has got a thousand times harder since I moved back from Bath - none of the pain doctors in my area will take me on as I have been under some of the top specialists in the UK and they feel that there is nothing more that they can do for me which is proving pretty heart breaking for everyone. I feel I can't win a lot of the time - they say I need to change opiates every 6 months, but the GP won't do it as they don't feel they know enough and I need a pain doctor.. who won't take me because I'm too complex etc etc.

However, good news! James and I have hopefully found a house! It's social housing so the rents are cheaper and it's a three bedroom bungalow that they've agreed to adapt for us, and even better there is both an ensuite and another bathroom (we haven't been allowed to view the property yet as it hasn't been completed yet - but should see it in the new year. However, I'm now stuck in the ridiculous rut of having to make decisions about equipment without having seen the house!). But, with my own bathroom we can have a closemat (wash/ dry toilet), ceiling track hoists and (hopefully) a bath - it has a roll in shower but I just can't tolerate that. Apparently there's flat access throughout, flat access to the garden, we can take Edgar with us etc and there's a room for carers. It's also only 20 minutes from my mums and main carers. Even better my father has decided to move abroad and has closed up his house here and we have got the furniture. It's exciting as we'll HOPEFULLY be moving in January (but it depends how long it takes to get the vital adaptations and equipment in).

Ali - sorry to hear that they've decided that your RSD is systemic - was this to do with the fainting as well? Debbie - Wow - I thought the Dr's were certain about the RSD? might be interesting to hear if they think there's specific nerve injury problems that could be fixed.

I hope that you are all doing well and I will try to be around a bit more and I hope you all understand that I haven't been avoiding you! Just trying to get over this stupid, stupid flare up!

Love and Christmas Wishes

Rosie xxx

I'm glad you are hopeful for some happiness in the new year !

Frogga -

Why aren't Candy McCabe et al able to hook you up with a good (and willing) nuerosurgeon, even if you have to go to London, Cambridge or (brrr) Edenborough for the procedure, and then have someone in your area do the follow up?

Similarly, would it be possible for Prof. McCabe to call a pain doc she knows in your area and say "take her, and call me with any questions, we'll always be in the loop"?

Mike

Rosie,

I have read your post for many years on this forum and always have been amazed at your positive attitude and inspiring drive. I truly wish and will pray that you get all the tools you need to make life easier for you. Having the service dog is the best and like you say "even if he's not trainable you'll have a great house Pet", which can give you the best care you can get.

Hope your Christmas is a happy one for you and yours.

Gabbycakes

Hi
 

Good to have you back....I am sure I don't have a nerve injury...its RSD :(

Deb

Hey Mike,

How's it going? You're in CA aren't you? hope you're not flooded :S. I'm waiting for an appointment with Candy and am going to discuss the whole thing with her and so fingers crossed.. my neurologist from Kings put me in touch with their neurosurgeon who refused to operate. I've got a referral to Frenchay in Bristol and fingers crossed they'll do something, but we'll see. I have a friend who has the DBS done - it took 18 months for improvements but she went from spending 5 years totally unable to move (including requiring a G feed as she couldn't open her mouth) to, over the course of the last 3 months regaining full movement in her right arm/hand/ shoulder, most of her head/ neck/ jaw, some of her left arm and she's gaining more movement and independence every day. So, I'm keeping my fingers crossed.

Just so difficult to sort out care. I am seriously considering writing to my first consultant - who was excellent - I was transferred away from his care because my father had a huge fall out with him and because he was considered an *** by the UK RSD charity - but he really tried with me. I do sometimes wonder what would have happened if I'd have stayed under his care. It might be worth a go.

Thanks and have an excellent Christmas and Happy New Year Mike

xxxxxxxxx

Hi Gabby,

Thanks, I'm really looking forward to getting Edgar trained. I think that he can fill some of the role that my friends at uni played in "motivating" me when recovering from flare ups etc whilst giving me more independence and just becoming a member of the family!

I hope you have a fantastic Christmas and best wishes for the New Year

xxxxxxxx

Hi Debbie,

:( I was hoping they might have some new ideas.

Hope you have a fantastic Christmas and a happy, healthier New Year!

xxxxxxxxxxx

Glad to hear you are at least currently getting the best available care, which makes sense, where you have to be regarded as something of a national treasure. ;)

And our rain, although very heavy, didn't turn out to be quite as bad as had been forecast for Wednesday: an extreme "Pinapple Express" or "atmospheric river," http://en.wikipedia.org/wiki/Pineapple_Express, which would have produced "rotating winds" (nice euphamism there), flooded all low lying areas and triggered possibly hundreds of mudslides: each of which could easily be deadly. As it turned out, although we had a fairly substantial downpour Wednesday afternoon, capping a run that had gone non-stop since Saturday, the predicted confluence with another weather system didn't play out as had been feared. (The difference in tone between the National Weather Service bulletins at 12:47 am on 22 Dec. and then around 6:15 that morning could not have been more striking.)

Of course, while the region as a whole was spared, there were some landslides that deposited up to six feet of mud in a number of homes below hillside "burn areas" (up to 3 years after a major wildfire), a number of roads and bridges were still swept away (including both going into one small mountain community) and the downdown of beautiful Laguna Beach in southern Orange County was completely flooded. ;<(

Rosie,

You,James and Edgar have a wonderful Christmas and Happy New Year. 2011 is going to be a good year for all of us.

Gabbycakes