[hamstergirl]

I found a disability forum today and started posting there for support.

Big Mistake.

I posted about my pain and the problem with waiting lists. The people there are making me look like a complete incompetant.

"Well, morphine seems to be a little strong for a first drug." I happen to be allergic to codeine, you dunce! (It was the 2nd drug and my doctor's not a pain control expert.)

One guy said that he had no problem accessing pain clinics. But he lives in Toronto, which as everyone knows is home to 2 million people and is the "center of the universe". Of course, he'd have no problem finding a pain clinic.

Then this same person wants me to get on the doctor's case. It's my responsibility to keep on top of every test, etc, etc, etc. It's not the doctor's job to "babysit."

I am living on Frosted Flakes and sandwiches because cooking is too much of a burden. I am dead exhausted merely from sitting up. I am now supposed to find the energy and patience to bug my doctors and find out what the &^%$ is going on with this whole mess.

Waiting lists supposedly don't exist, according to this user. Why are they all over the news then? Why is it taking me two months to see a urologist when I'm in agony? Because they want to make a vacation out of it?!

Why doesn't the doctor tell me up front that I have to book my own stinking bone density tests in the first place? I 'm trying not to scream half the time. Swear words constantly come to my lips. I never do anything pleasurable any more. I am confident I don't want these doctors near me. Now I'm supposed to deal with these dweebs personally because the doctor is either too overworked or too busy playing golf.

Tell me, why should I do something as stupid as draw attention to myself when I don't want these peasants near me? Why hasten the inevitable trip into Hades?

This is not a support group for me. I have not evolved to the point where I can be Supercrip: hold down a job,find new and creative ways to bleep my boyfriend as if nothing were wrong with me, take insults with a grin, all while living on morphine. I am not the "ideal" disabled person. I am not proud of the fact I am disabled, like these people say I should be. I am bitter, angry and burned out. I am tired out by the slightest thing.

They should be grateful I'm not in a nursing home (yet). It's all I can manage to pour a bowl of cereal and write my daily posts. Anything else is pushing it.

Dealing with the medical profession especially is pushing it. I do not want to get intimately involved with these peasants, if you catch my drift. I have spent the past 12 years trying to avoid them.

When a doctor says you have to wait two months to see a specialist, you tend to believe her. You particularly don't want to irritate her after you were locked up for almost two years for non-compliance.

Oh disabled people aren't supposed to get angry or depressed.

I am just so bloody tired.

There is a thing more crippling than cerebral palsy: the prison of your own mind.

[SS8282]

(((((((((ham))))))))))))) I'm so sorry this happened. Some people are jerks who think they know everything. Big hugs.

[(JD)]

Sorry (((Girl))) we know you have more than your share of problems... and quite honestly, no one who hasn't followed you for a while is going to believe it.

Remember? People who are disabled often are still working! I do have my own "problems" with the disABILITY theme and all... the thinking being that having a handicap and getting disability doesn't mean you can't function in the world. NOT.

So stay here, where we at least try to understand and give you enough support to keep you trying... you're stronger than they are any way.

If you do go back, you probably need to baby feed them small amounts... they probably can't handle real disability eh?

<font color=green> ...slip sliding away... slip sliding away....

[hamstergirl]

Sky, you can function in the world, but you need help sometimes, sometimes lots. I've met some very, very capable disabled people who went on to get married or take jobs, but they came from families who didn't totally *&^% them up.

Mine did.

When you do function in the world, it tries your sanity to the max. The world is built for able-bodied people and it treats you that way. People assume you are stupid, incapable, or worse. They can think you're courageous and noble, just because you're in a wheelchair.

I read a story of a college teacher who gave a woman with CP a D instead of a B+ because she didn't think the woman would make a good teacher because she walked funny. And she told her so to her face.

You are never instantly sure of anything in life, even a vocation,because other people tell you what you are or are not capable of doing, even though you may be very bright

It may take you years to discover that you can do the things that other people can do, but you do them differently or with a lot of help. Having psychiatrists tell you that you are depressed because you cannot do the things that normal, intelligent people do, quite frankly it hurts. I wanted to ask the shrink who said that for a list of things that she thought I couldn't do.

Live on my own?
Get married?
Have kids?
Hold down a job?

I have heard of disabled people who were able to do all of these things. I am sure that I could hold down a job if the circumstances were right. (I would likely have to work from home. As it stands now, it looks like my pain may leave me bedridden. I can at least write from that position).

Most of my pain is caused by the fact that I am deliberately excluded from society by the barriers that other people leave in place. The technology exists for us to lead full, rich lives. There is no real excuse for excluding us from society, save lack of political willpower.

Then there's the boneheaded comments, especially those from people who should know better, like psychiatrists.

I have thought of getting a degree in psychiatry should things improve. I think I could really help people. But I wonder what sort of discrimination I would contend with, even among the professors in the university, based on my physical disabilities and my psychiatric history. One I can hide, the other I can't. (I wish I didn't have to hide my fight with mental illness. It's a big reason why I would study psychiatry.)

Personally, I think society is built to drive people with disabilities insane. ("Hey, it's perfectly okay for them to stay on welfare until they rot. The government will take care of them." Well, I want to take care of myself.)

It might not be possible for me now. My pain prevents it. But for my compatriots, why not?

There is a thing more crippling than cerebral palsy: the prison of your own mind.

[silver_queen]

I wouldn't pay too much attention to what people say over the internet, hamstergirl. (At least pay no attention to the bad stuff. We're the good guys here .)
Most of the time people don't know what they're talking about. Take what they say with a pinch of salt. (I think that's the phrase - looks weird written down. Anyway, what I mean is don't take what they say too seriously, because it's probably made up on the spot.)

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RIP Dexter...
<font color=red>The best dog ever!!!</font color=red>

<font color=green>In the real dark night of the soul it is always three o'clock in the morning.</font color=green>
- F. Scott Fitzgerald

[Wants2Fly]

I think Silver Queen has got it about right about the online comments that hurt you.

The diagnosis of lupus (mild, but that's not the same as nonexistent) has made me aware of all that I haven't been able to do for quite a while --but thought it was "just me." Had no idea it was disease that is NOT ME.

I've read about people who park in handicapped spaces, but who don't appear disabled, who get all kinds of mean remarks.

I haven't run into that, but I am running into people who I tell that I have lupus and can't do some things, and they start making plans for my life, as if I can do those things and keep up with them. I even have people tell me that i'm just imagining my illness!

That sure helps a lot. (That's sarcasm, ha,ha)

I'm looking for employment, but I'm not even sure if I'm going to be able to do an 8-hour day anymore, as I was able to do a lot of work at home, at my own pace, for the past 15 years.

And the option of working as I have been isn't open right now.

Please keep sharing, Hamster Girl, I love reading what you have to say, and knowing that you are here for us..

Hugs, hugs.

[dexter]

>>they start making plans for my life, as if I can do those things and keep up with them.

People do that even for illnesses that are apparent. I have a friend with much worse arthritis than I, sometimes she can barely walk at all. Her friends have seen her this way. Then in a few hours they'll call and ask if she wants to take a trip to the mall or something. And when she explains that she can't, they cop an attitude, like she's using as an excuse to blow them off. It is like they see the arthritis but can "switch it off" when we want to do something.

It is so much harder with an "invisible" illnesses. In a way I was fortunate in that my depression corresponded with my arthritis. When the depression effects were hitting me the heaviest, everyone assumed I was suffering from the arthritis... having to leave work early, etc.

I am always annoyed at the assumptions that people make, for example with the handicapped parking. I am sure there are people who abuse that (people who are not disabled and use those spots) but for a stranger to make an assumption because of your illness doesn't involve a cane or a walker, well, people are just stupid. Tell them you are picking up someone who has to be able to walk from the store to the car if anyone bugs you, and you don't feel like explaining yourself.

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--http://www.idexter.com