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

Hi Frogga,

I don't post to you often, because, frankly, you intimidate the Hell out of me. You don't do it intentially, of course, but when I see the contrast between us...well, the gap seems too great to cross.

You're barely out of the womb and someone beats the crap out of you; you get up and go on. You travel down the street and get hit by a truck; you brush yourself off and continue. You're sitting at home and someone breaks in ans assaults you with a sledge-hammer; you go into the loo, wash off the blood, and return to the book your're reading.

I trip over my own feet and I lay there in the mud for three hours, crying. I get up eventually because laying in the mud is uncomfortample, but I'm not Frogga; I wonder whether walking is worth the risk.

Intimidate is the wrong word. It's more like awe. And inspiration of course. But I'm not inspired to be like you, 'cause I know that is never going to happen. Not for me; maybe not for anyone, you are different from the rest of us. Everyone who knows you knows that.

I accept the fact that most people won't talk to me because I'm in a wheelchair and they just don't know how to talk to people in wheelchairs. You're in a wheel chair and you have more friends right at this moment than I've had in my entire life. If you never have the chance to work at your chosen career, you have already accomplished more than most peole do in a life time. But I think you will have a career, and hope to witness your accomplishments there.

Anyway, Imagine how I felt when I read this post and realized that I have something to contribute. That I can tell Frogga something that might be useful to her. So here goes:

WOEWTR may not be, degenerative. That word carries implications of things crumbling and dissolving. Retrogressive means that symtoms are getting worse: More pain, more disability, more of the same, but worse as time goes by.

Degenerative or retrogressive, you can drive today and you will be able to drive tomorrow. Someday you won't be able to drive, but unless they know that someday is next week, next week or six months from now, its irrelevant. You may get run over by another truck tomorrow and get killed. We can't know the future, so we live in the present and hope for the best.

Be ever so happy that this guy seems to be on your side. Hell, everyone who knows you is on your side. The good news is that right now, that van is in your future. Make sure they build it right; fixing mistakes often means fixing what got fixed. I can imagine your impatience, but six months will pass. It may seem that time passes slower under some circumstances, but as Einstein proved, that's only true when you're travelling at nearly the speed of light.

I'll address the heat insensitivity in a moment. I want to talk first about universities in the US:

One would think they are the centers of enlightenment and progressive thinking. Nothing could be further from the truth. They are the most reactionary not for profit institutions in the country. We expect Exxon or General Mills to not give a damn about people. Profit is everything to them, so getting annoyed over their indifference to humanity is a waste of energy.

Universities want to do things the way they have always been done. Sure, new science is greeted with cheers and self-congratulations, but parking spaces for cripples? They didn't even have cars when this univ was built; just be grateful that Henry Ford invented cars. He didn't, of course, but university administrations aren't staffed by history majors.

I will talk about some of my experiences, but promise they are remarkably similar to those of others throughout the country.

When I enrolled I learned that special parking stickers allowed one to park closer to campus buildings. The better the parking, the more expensive the stickers. Some were, honest to God, reserved only for tenured professors. This is how it had always been done, and they were not, by God, going to change just because one student didn't like it.

Well, their students were pretty much recent h.s. graduates; not 46 year old ex-Marines who had led active lives and been to war; not people who had been willing to go to jail to protest a war most of their sudents considered ancient history.

By the time I graduated, I not only had "tenured stickers" ("No charge; we're here to help you"), but it was pretty much accepted that Vic was going to park just about anywhere he wanted. If a univ truck parked someplace - anyplace - and I thought that was a pretty good parking place I parked there too.

During the process, however, I received something more than 100 parking tickets. (After the first dozen or so, the judge told me I didn't have to come to court to fight them anymore; he would just tear them up).

But other handicapped students followed the rules, so the rules are exactly the same today. Vic was just an annoying abberation and thank God he's gone and we can get back to doing things the way we've always done them.

The Equal Opportunity Office was on the 2nd floor of a building with no elevators. When I phoned them the first time to request their help, I was told that if I couldn't come to their office, they couldn't help me. Well, that changed when I told them if they couldn't help me I'd just have to file an ADA (Americans with Disabilities Act) complaint. Toward the end, they just kept my file on a desk so someone could bring it downstairs with them.

I called the univ this morning and confirmed that the EOE is still on the 2nd floor, and people who can't climb the stairs are probably still not being served. Everything as it was.

I could go on, but you see my point. TRADITION not people. Harvard is the most famous university in the country (unless you're a basketball fan), and the student body is filled with the future leaders of this country. It might be different. But Harvard students want to graduate with the highest possible GPA and making waves is not the generally accepted route to success, so Harvard peobably hasn't changed much either.

Living in Boston: Winter there makes a January in Scotland seem a nice time for a garden picnic. All women in the Northeast US sound like they're on their way to audition for the next floozie role in the Sopranos. It goes downhill from there.

If you can't bring your care providers with you, stay home. It will be Hell. This isn't subject to debate: you will suffer terribly.

Before you think up putting that beautiful new van on a ship to the states, contact the Customs Service. Better yet, have someone who knows the van intimately call them. You will nead to learn exactly what will need to done to bring it into compliance with US and state environmental laws and regulations.

IF YOU DON'T DO THIS, DRIVE THE VAN TO THE SHIP YOURSELF: IT WILL PROBABLY BE THE LAST TIME YOU WILL EVER SEE IT.

There are hundreds, probably thousands, of vehicles parked in locked and guarded lots at every port in this country. They did not meet the laws and can't be driven in the states until they do. This can cost thousands of dollars.

They can't be returned to their country of origin either. Once they roll off the ship, they are not going anywhere until the govt certifies they are legal here. Not going anywhere means they can't be put on a ship to go home: not until they are fixed.

If you don't pay attention to what I've just said, it is possible that people would contribute money until the updates could be paid; we are, after all, talking about Frogga, where miracles sometimes follow. But don't count on it.

I want to talk you you about heat insensitivity, but right now I feel, like we say in the west, rode hard and put up wet. I just can't write anymore. I will, believe me, I will, because what you describe scares the Hell out of me.

You MUST find out what's going on, and you must do it now. Time could be of the essence. I have no idea what's going on, so I can't promise that early diagnosis means a more successful outcome. But I can state categorically that waiting can only bring more harm.

Frogga, don't mess around with this. It's something like when I was driving truck and some jerk took umbrage over something I said. He got on the CB and demanded to know where I was so he could come over and kick my ***. Not knowing how big or tough he was, avoiding conforntation seemed the wisest choice. So I told him that he may be bad, but he's not bullet-proof.

Thats how it is Frogga. You have overcome much; far more than I, but don't mess with this thing. It could put you down permanently. Find out what in the Hell is going on. Don't settle for anything else; certainly not for "lets see how things develop" Find out now, Please...Vic

Hmm guess I didn't wait to talk about it after all.

WOW! do you think there is a link between RSD and lack of common sense/ predisposition to bizzare lives?? what with Curious's finger, Jo's son, Jeannie's mini forest fire, Artist's Frog and many many others..........you'd think so!!

Vicc - Thanks so much! I love your emails! I never realised I'm intimidating?!!! Wow - that's bizzare.. I'm just me. (though my head is growing daily!).. You sound so like me when it comes to beating the **** out of university staff! glad to know some americans are carrying on the tradition! why are your uni's so set in history?! your history is only like 500 years old isn't it? (admittedly I still have a lecturer that thinks that wheelchair = stupid - bloody idiots. I am tempted to just rev the chair up and run them over - even better with my elevating leg rests and male lecturers HAHAHA!!). When I lived in LA I found that it was such an odd mix of great access and terrible access!! I'm at Bath and my department is on the second floor. The only way I can get up there is if I promise thousands of favours to the rugby team so they can carry me up and down the stairs....I guess it's the problem with being a minority group or something. You sound so like me on the parking as well - at my college there used to only be 1 disabled space and if anyone else stole it I used to park my car on the road just outside reception and storm in and drop my keys at reception and tell them to deal with it and move it somewhere sensible. I can't believe the EEO was upstairs!! that is so dreadful! how were the lecturers? did thy make allowances? mine don't really apart from trying to chuck me out of class on "bad" days.. (apparently they worry that if I go grey and turn into a jelly they would be responsible).

How many RSDers are from Philly? you all seem to be!!! If I come over to the US I will personally ensure I have lunch with all of you! It would be so great to meet you all and put faces to names!

I would love to do the US for my placement year but I'm not sure I am going to win the funding (see later post). or at least not the funding for carers etc to the US.

Vicc - I wouldn't dream of taking the van - if I go I want to be on a campus based uni. Do they have long wheelchair accessible buses? I know in LA "no one" uses buses but just in case other states do? Parking is rubbish in the UK so in some places and times it is quicker to take the bus in than try and park! I think I may give Harvard a miss - it seems a little too cold for me to survive there!

Also I would have to check insurance - because i know I won't manage a year without a doctors appointment... and I bet travel insurance wouldn't cover RSDer... dammit. or at least not for a year!!

The van - I'm abit less upset about it now - I just so wanted it for summer... but oh well.. just means I will have to take the rugby team home with me to shove me in and out of the car.. in fact I may get them to carry me on a litter like Cleopatra.. (imagine!! a great variagating air bed being slowly carried by a team of rugby guys with me perched on top yelling instructions!).

LOL Vicc - I'm not a huge fan of mud - I would probaly yell for someone to rescue me.. but wow - you paint me as some form of pain superhero - LOL.. (actually can I be?!? what colour is my cape?) ok. Back to serious. I'm also not fond of rules - in fact I am liable to just break the rule for the hell of it to see what happens... because some rules are just STUPID!! (more on that later as well). Our worlds aren't that disimilar - we both live with chronic pain , we have both had to fight the idiotic education system with chronic pain, we're both very obstinate and we are both perfectly happy to break rules right, left and centre. The problem with diagnosis with everything is that in the NHS it takes years.... I started under a new neurologist last summer and they said we had 2 choices...1) to test, test, test and see what happens or 2) start treatment and see what happens. I chose option 2 because I just wanted to get on with my life. Also I have had MRI's, CATs, X RAYS, Thermographies, Bone Densities, EMGs, doplers etc etc. The MRI was almost clear apart from some small issues with the optic nerve which is why they said possible MS/RSD...

Sometimes I get so frustrated - my body is shutting down and I don't know why. But I think it is probaly the interplay of all my diseases together or something.

got to have a break but will be back!!!!!

Froggsy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Frogga,

You are such a joy here. We are truly blessed to have you on this site.

Not only do you have so much wisdom beyond your years, you are so humble as well. You are lovely and beautiful. I am truly honored to even chat with you mate.

The only one thing that has kept me going is hope. I am wishing you earthly joys and heavenly blessings. Huge Hugs, Roz xxx