Hi Frogga,
Sorry about the burns and the van but if it makes you feel any better, I burned the aluminum siding on my house by trying to start my barbecue using newspaper!!! This was before rsd so I couldn't blame my clutsiness on my pain meds. Hope your on the mend soon. Jeannie

Hey Jeanie..

LOL! that does make me feel better...!! I am such a clumsy oaf sometimes as well.. I have abit of a reputation. I mean, seriously, if something is going to happen, then it WILL happen to me. Apparently I am a magnet for disaster - it is a family joke.Even since RSD I have been dropped down a flight of stairs, dropped in a bush on a cliff, rescued by 8 firemen and then carried 1/2 a mile.... etc.

Take Care!!

Love

Froggsy xxxxxxxxx

PS - was the rest of the house ok?

Sorry about the burns, dear Froggsy!

I hope and pray your are doing somewhat better- let me know, please?!

Hang in there!



P.S. If you come to the US (and definately if you come to the Philly area)- you and I have got to meet! Please?!

i broke my finger washing dishes. trust me...that is not a good way to get out of doing THAT chore.

i was putting one of those heavy 13x9 glass baking dish in the sink. little did i know that my sink was 13 inches long. caught my finger between the dish and the sink. smashed the tip flat. it healed..but boy was it a sight all bandaged up. it was my flippn' finger on my left hand. i had to keep it raised...so i was flippin' people off for months.

heal well and fast frogga.

Hi Frogga....Glad I made you laugh. Yes, the rest of the house was O.K. but what I was too embarassed to mention was that my back yard just happens to be a state forest. So, here I am, on a dry summer's afternoon chasing little bits of flaming newspaper with a garden hose so that I didn't start a forest fire!!! To make matters worse my husband pulled into the driveway while all this was going on. It's good I didn't have rsd then because I never would be able to catch the flaming newspaper now. I would have made a great story for the evening news!!! Jeannie

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

The dept of EOE. thoughts/question-

They should be able to make an appt and meet with needy students at accessible location - I mean what are those laptop computers for anyway.

side note-
{ around here there has been a few instances of high level office workers taking work laptops out of the office and they get stolen out of their cars!}
Those computers had employee personal info and customer/client info!

Hey jo

They were perfectly agreeable to coming downstairs to talk to me, AFTER I threatened to crawl up the stairs as far as I could, then wait and trip them on their way down.

At first, however, they honest-to-God did tell me that if I couldn't come into the office they couldn't help me. mumbled something about all their files in the office and too much work to bring them to me.

And I suspect they are still saying the same things. TRADITION, doing things "the way we always done it".

Frogga, I amended "intimidate" to awe. What awes me is that you keep going. The energizer bunny in a power wheel chair. If life had hit me with so many things at such an early age, I think at some point I would have said I can't do it anymore. Just send me the pension and I'll stay home and watch TV. You didn't, and haven't.

And I'm not what we call a *****, either. In Marine boot camp I never fell out of a run or a march. Not many can claim that; just about everyone takes a break some time. I know "steady on" despite the obstacles, and I'm pretty proud of myself and my record. But I'm pretty sure I wouldn't be able to overcome what you have. I am so proud of you; and I do hold you in awe.

I hadn't heard 'wheel chair = stupid', but I know that almost every admissions clerk firmily believes wheel chair = deaf. My mother-in-law was in a chair after a stroke, and whenever I took her to any medical facility for any reason, the clerk would address her questions to me: only hear replies such as; "she's invisible, but she's here', or 'talk louder, I can't hear you...why don't you ask her, she can hear?'

That was when she finally began to like me: In our wedding album, every pic of my wife's parents shows facial expressions more typical of someone touring a make-shift (and unreferigerated) morgue after a major disaster.

I had a professor who believed handicapped people are a burden on society and were best tucked away in instutitutions around the country. We had some interesting classroom discussions. I suggested several times that he try growing a tooth-brush moustache, and I'm sure he took that as a compliment. I made some other suggestions too, which entertained the class but not the professor.

I made a D- on every test and assignment in his class and got a final grade of A.

He learned not to mess with someone who travelled the country organizing anti-war demonstrations (I prefer the word "riots" myself). It was easy to organize 40 students (all of whom hated him), and have us all meet with the Dean and the prof at the same time.

There were others; not as publicly extreme but just as reactionary. The university is not the centerpiece of enlightment but the bastion of reaction. Not all that different from society, just more disappointing. You expect more from educated people.

And, it really is hard to describe the sense of satisfaction - and revenge - at hearing a judge announce from the Bench, and on the record, that he would tear up all future parking tickets the univ cops wrote me. I only wish a representative of the univ police dept had been present

If you do come to the states, you're always welcome in Kansas...Vic


WARNING: People who talk about their P U S S Y cats will be asterisked.