Heya all.

Firstly I love all you guys and you are all so awesome - you don't realise what a difference you all make to my day and my life.. it is so great to feel I can come to a place where people understand.

Well... today has been... quite a day. Been struggling with good old RSD as ever and it's been cold and raining here - WHY did I choose a university in Bath?

Saw van guy - this process is going to be alot longer than I thought - was hoping that it would be "well, you passed your driving test in a cripple car so lets give you a bigger car so we can shove your wheelchair in and thus you can then actually USE the car WITHOUT having to have the spare person to lift you out of the car at the other end. Apparently, I now have it written that WOEIWR (whatever on earth I have wrong with me today) is degenerative. Wow. Thanks for telling me! Thus the person was trying to tell me that I really should consider stopping driving and just getting a passenger van. Anyway, he's agreed that I can drive, but I now have to have a different van because I need new controls. They are going to try and either make the steering joystick controlled or some other high tech gadgetry..However. This all takes time - so I could be looking at another 6 months or possibly more without a van.

Does anyone else have issues with heat sensation? I can't really feel it. And... well... I was hearing up my wheat bag earlier which I use when it's cold and damp just to warm up stupid limbs and it was so hot I burnt my hip - but not very badly. I then heated it up again for my left arm which is being a total b**** at the moment and has to have moist heat before restretching it. I didn't realise it was hot again until my carer came running in because she'd smelt it burning and I'd just been sitting there. so now have the most amazing burn running the entire length of my left arm. To cap it all, I was with my boys (my... lovely, yummy, rugby boys that live in the university flat next to mine) and they were heating the pack up again and thought I said 20mins not 2. I noticed after about 15 minutes and realised that it was about to blow up... so grabbed the bag and chucked it on my lap - and of course because of the pain of moving fast I went in to "body lock down mode"... After a minutes stunned silence Ben grabbed it off my lap and ran with it outside (sounds heroic until you realise we get charged for setting fire alarms off - especially for exploded lavender). So am now burnt pretty roughly on my left leg from hip to knee and my left arm. oops. It REALLY hurts now though and I can't believe I was that stupid!! But, at least it was bits I'm used to not working anyway - and what's a but more pain to an RSDer?

So... have managed to destroy the wheat bag (had it confiscated by the boys - only to be used under strict supervision of anyone that isn't me)... get told about the degeneration (I personally thought that what they meant was that I wasn't likely to get better - not that I was going to get worse - not really sure where worse goes from here physically - well, I suppose if I get ill to stay in uni - but that is NOT going to happen.. (though hey, thinking about uni - I may appply for a pain management condition for my year placement - which I can take in the US - so I'll let you kjnow if I decide to go there and then you can tell me the great places to go and which hospitals are good.. (there's a great research position in Harvard they were telling us about but it's in an area I'm not very interested in).

Loads of Love

Froggsy xxxxxxxxxxxxxxxxxxxxxxxxx

Hey Frogga,

That is a catalogue of disaster, all right, damn shame about the van delay (really! why didn't they check what you needed first!) and why are you burning yourself, you daft ha'porth? Think if I were you I'd spend today practising balancing pints of beer between my er, chests, LOL - course they're a lot easier to manage when they're empty, so you'd have to keep drinking the stuff to give yourself the best chance, only fair.....

And what's WOEIWR? Looked it up in Google which said "did you mean WEIR", thank you Robot. OK, can't be online much at present but just wanted to commiserate and say "tarnation!", lots of hugs,

all the best!

Frogga. What a crap day! Double-chocolate for you! Just ignore the degenerative label. Perhaps they meant to say degenerate? Tarts flinging about burnt bags and all might be downright dangerous to the peace! Bravo for return to uni, despite being burnt and van-delayed. Recommend Philly area in U.S. for RSD treatment and university research climate [weather climate rotten, though]. Perhaps bring brave Ben with you?

me thinks our frogga is really having the true uni experience. but holy cow frogga...ya gotta watch those rugby boys more carefully! or atleast teach them to tell time!

pssst...i'm in the dallas texas area....i do hop eyou get the chance to come to the usa.

to cheer you up:
Attachment 1063

my son set the microwave on fire - he set the time for popcorn at 23 minutes instead of 2.3 minutes --so it does happen
just an extra touch and too many minutes.

sorry about the van being on delay & I hope the burns heal Ok for you.

ouch ... unfortunately those bags can get really hot and our temperature sensors are not so good ... i use a heated throw. it is electric and has a low and high temp so i can be sure of how hot it is. they are pretty cheap and worth the money. i often have it over my legs while i am on line.
hope you feel better.
as far as doctor in the US ... do any really know about RSD? and if so are any sure? i don't think so. joan

You had one of those days that just couldn't have gotten better if you could have erased it and started all over.

As far as that heating things up or should I say burning things up, it comes with the memory thing of the RSDS I believe. I am bad about forgetting I have things on the stove and going off and leaving them. Bill kept smoke detectors all over my house because of how bad I was. I hated those things.
Having them there sure didn't keep me from setting them off.

I am sorry about your van. It does take a long time it seems when they are making special vehicles for disabled people. Hopefully it won't be a whole 6 months.

Don't get those bags too hot Frogga because I have had several Drs. say that if you get water too hot or heating pads it can wake up the nerves more and make the pain worse. As I'd said before, I can't take a really hot bath.

It does sound like you had a very exciting day. There sure wasn't no lull in it was it? LOL

If you are like me you turn it into something to laugh about to keep from feeling like nothing goes right. My PA use to call it a sick sense of humor.

I hope today will go better for you.

Ada

Heya .....

Well..... thanks everyone!

I am currently living in student accomodation on my universitys campus and thus I have had to try to explain to the housekeeper and cleaners why there is an exploded microwave and why the kitchen is covered in brown burn stains (from the bits of wheat burning holes). I don't think it pleased them, but they had a giggle about it! The burns aren't amazing but could be a lot worse - I was very lucky. I have a horrible one on my thigh and the underside of my arm but otherwise it has been sort of ok. However, the shock hasn't helped!!!

Van - I guess it's just that I started this process a year ago and I was so hoping that it would finally be a delivery date and set of keys - but for the assessors to have changed their mind is horrendous! I just found it hard as though I have been trying to not get too excited about the prospect of being able to go out - I have been.

Unfortunatly my life has a habit of being bizzare !!!!!

Thanks guys!

Love ya

Frogga xxxxxxxxxxxxxxx

Hang in there Frogga! I know you are disappointed about having to wait for your van, but when it arrives, you will have a smokin' set of wheels.

I hope your burns heal quickly. When I have a bad day, I like to get a six-pack and a pint. A half dozen brownies and a couple of glasses of milk seem to make the day better. Regards, Lil

frogga,

i hope your burns heal quickly....i think that's the most painful injury there is, tho as u pointed out, we all have good training for dealing with pain!

maybe tomorrow will be better.....i have to think that your chances r good for that!

liz

p.s......i'm near philly too....and while i can't recommend the weather, if you end up near here, we'll do lunch - count on it!