[wheeliebar1]

I'm tired of getting crap, even if it's jokingly, for not being a "real" SCI. I had a mass on my spinal cord from C1-T12 since January 2008 that was removed in November 2009. It took a looon gtime to get a diagnosis, and they still don't know how the mass got there or if it will come back. But the great news is that when they removed it I went from being functionally a C& quad to a T4 para. !!! I am SO TIRED though of people telling me, even if they are just "joking" with me, that I am not a "real" SCI. Because I didn't get into an accident. I deal with the SAME crap as everyone else, the same spasticity, nerve PAIN, B&B stuff, etc... My spinal cord is just as damaged as someone who fractured their vertebrae... mine was just damaged by a mysterious mass that almost killed me and also caused me to have hydrocephalus and need a shunt in my head. I also had a brain bleed from the hydrocephalus, which took away the remaining leg function that I had when it damaged the part of my brain that controls my legs.
Don't get me wrong- I am SO thankful that for what I have. I could have died from this mass, as it went all the way up to C1 and caused hydrocephalus to boot. I just don't like people's "good-natured" comments of "oh, you're not a real SCI"

Thanks for listening

[M@CHINE]

who cares what they think , they don't know anything about being paralyzed anyway

[qbounce]

Unfortunately,
What you're dealing with is much worse, in that you are living with a long drawn out traumatizing illness that has slowly debilitated you to the point of paralysis.

That sense of the unknown diagnosis is stressful enough on its own accord, but when you throw in all the terrible symptoms you're dealing with when the spinal cord is being slowly squeezed out, I hasten to say that it's like one very long spinal cord injury, repleat with multiple specialist visits, and test upon test until it gets zeroed in.

WB . . . . RESPECT!!

I'm sure others feel the same way. They just try to deal with your situation with humor, or what they feel is supposed to pass as such. So try not to let it get to you when someone says it's not a "real SCI" 'cuz they're trying to be funny and keep things light and airy on a website that could use all the laughs it can get.

[wheeliebar1]

qbounce, on Feb 12 2010, 05:20 PM, said:

Unfortunately,
What you're dealing with is much worse, in that you are living with a long drawn out traumatizing illness that has slowly debilitated you to the point of paralysis.

That sense of the unknown diagnosis is stressful enough on its own accord, but when you throw in all the terrible symptoms you're dealing with when the spinal cord is being slowly squeezed out, I hasten to say that it's like one very long spinal cord injury, repleat with multiple specialist visits, and test upon test until it gets zeroed in.

WB . . . . RESPECT!!

I'm sure others feel the same way. They just try to deal with your situation with humor, or what they feel is supposed to pass as such. So try not to let it get to you when someone says it's not a "real SCI" 'cuz they're trying to be funny and keep things light and airy on a website that could use all the laughs it can get.

Thanks very much. What you said rings very true yo me. And actually, no one on this site has said that I'm not a "real" SCI... it's all from ppl in my community. This website and forum is absolutely fantastic with the support it provides. I am so thankful for it.

[Tetracyclone]

Wheeliebar1-

Qbounce speaks for me as well. it is so common for people to be more interested in their differences than in what they share in common.

[WildKat]

wheeliebar1, on Feb 12 2010, 08:31 PM, said:

I'm tired of getting crap, even if it's jokingly, for not being a "real" SCI. I had a mass on my spinal cord from C1-T12 since January 2008 that was removed in November 2009. It took a looon gtime to get a diagnosis, and they still don't know how the mass got there or if it will come back. But the great news is that when they removed it I went from being functionally a C& quad to a T4 para. !!! I am SO TIRED though of people telling me, even if they are just "joking" with me, that I am not a "real" SCI. Because I didn't get into an accident. I deal with the SAME crap as everyone else, the same spasticity, nerve PAIN, B&B stuff, etc... My spinal cord is just as damaged as someone who fractured their vertebrae... mine was just damaged by a mysterious mass that almost killed me and also caused me to have hydrocephalus and need a shunt in my head. I also had a brain bleed from the hydrocephalus, which took away the remaining leg function that I had when it damaged the part of my brain that controls my legs.
Don't get me wrong- I am SO thankful that for what I have. I could have died from this mass, as it went all the way up to C1 and caused hydrocephalus to boot. I just don't like people's "good-natured" comments of "oh, you're not a real SCI"

Thanks for listening

Wow that was a major jump in function wasn't it?! I had Transverse Myelitis and I've been told I don't have a "real" sci so many times in the past five years that I lost count. Every medical record I have since then calls it an "sci" because basically even though the bone wasn't damaged the swelling caused my spinal cord to become just as damaged as if the bone had been damaged. Like you, I still have all the same problems as any other person with an sci (plus all of the constant tiredness that goes `long with TM). The thing that bugs me most is usually the "accusers" are people who got an sci from an accident. At this point I've learned to ignore them because they obviously don't understand enough about TM as they don't have it and I move on. Try not to let it bother you too much.

[Avocado Baby]

Hi there,

I just wanted to agree with the others and say I'm really pleased for you that your function improved so much!

I don't have an 'SCI' but still have a lot in common with people who do. It's our shared experiences and support that matters, not an official diagnosis or other people's uneducated opinions.

qbounce is probably right about people trying to be funny though. I guess it's difficult for people when they feel awkward or don't know what to say.

[dangerousdave]

Pisttttttttttt
one of these days I'm gonna be found out
I'm just a SCI in a AB body

[wheeliebar1]

thanks to everyone for your supprt so far... It really helps to know that there are people out there that are just like me, who have been paralyzed from a mass or TM (they think I may have some form of that as well since i also deal with chronic fatigue) and that there are people who have been injured from an accident who also realize that whatever that cause, the end result is the same.
THANKS AGAIN!! YOU ALL ROCK!!

[Dancingdolphin]

You rock too :-)

[Ratticis]

I've heard that crap too. TM for me. But the way I see it, my spinal cord is damaged, or 'injured', therefore Spinal Cord INJURY applies. But some people are too stupid to listen.

[slyd]

Yup, can relate

My "SCI"was from an AVM in the cord, taking 9 years of progressive paralysis before being correctly diagnosed and the offending bleeder clipped. Early on, it was suspected as a TM, a virus, an "unknown", and many other things.
One neuro I went to (one in a long list while trying desperately to find someone "clever enough" to figure out what was going on) went through my huge pile of MRI's and reports accumulated over the years, actually said to me "so what do you want ME to do?" It was the first time I cried in a Dr's office !!

Anyway, either way you look at it, from whatever cause, your spinal cord has been injured, and you suffer the same effects as any other sci.

So screw anyone who minimilises your injury, their opinions don't count for sh*t!

[Tetracyclone]

Back as far as late 1980s my dad suffered spinal stenosis and had one of the finest surgeons on the US East Coast. Two surgeries over the years, and he limped along complaining of decline in his bladder function and control and every single Doctor he saw said " well, you're old. What do you expect?"

My Dad is a bright guy and he knew these answers were , but the lack of any better explanation ate into his confidence.

Finally I am injured and find out that most lumbar SCIs have bladder and bowel impairment. I'm still furious that these supposedly intelligent physicians never thought of spinal stenosis as an SCI, which it obviously is. Had they, they would have been able to explain a host of his symptoms, and put his mind at ease.

People= if something injures the spinal cord it is a spinal cord injury. What about this is difficult to understand?

Preaching to the choir again...

[slyd]

Tetracyclone, on Feb 14 2010, 05:09 PM, said:

Preaching to the choir again...

But THIS choir (me included) loves to SING . . . 'specially the blues !

hale-a-loo-yeah brother, I have seeen the light!

[Tetracyclone]

slyd, on Feb 14 2010, 10:27 AM, said:

Tetracyclone, on Feb 14 2010, 05:09 PM, said:

Preaching to the choir again...

But THIS choir (me included) loves to SING . . . 'specially the blues !

hale-a-loo-yeah brother, I have seeen the light!

write us a R&R hymn called WTF!

[greybeard]

Tetracyclone, on Feb 14 2010, 03:31 PM, said:

write us a R&R hymn called WTF!

WTF
WTF am I supposed to do?
I'm so tired of hurtin' it's making me blue.

My back ain't bin broke but I can't figure why.
it sure as hell feels it and the docs - they all lie.

Spinal stenosis is what happened to me
Now I can't dump, have a shag, or even pee.

God knows what they learn, but the doctors don't help
They fill me with pills and just make me yelp.

They pull this and poke that and take lots of scans
then gather in groups and start wringing their hands

They dither and mumble and just cause delay
and when asked outright, say "We really can't say!"

"Let's open you up for a good rummage through.
We might even find we can mend you with glue".

I'm tempted to do it for the chance of a dump,
So help me, my friends, WTF way should I jump?

This post has been edited by greybeard: 15 February 2010 - 08:42 AM

[Tetracyclone]

Oh, GB,
this is outstanding. I called up my Dad, who turned 89 a week ago, and read it to him. he laughed but said I'd interrupted his walker practice.

Outstanding.

Pat

This post has been edited by Tetracyclone: 14 February 2010 - 07:05 PM

[edlee]

SCI??? NOT SCI????

Hey,,, if it walks like a duck,, looks like a duck,, quacks like a duck,,,

IT'S A F**KING DUCK.

If it's said as a joke or to be funny,, play along with it.. if you can. If they sound serious,, just just say " it sure feels like SCI from where I'm sitting".

The main thing is not let it bother you,,,, it's only a label,,, a pigeon hole to put us all in,,,, so what if you're one hole over???

And never apologize for venting here,,, that's what we're here for.
ed

[Soryfam]

I understand.. my SCI came from a MRSA infection that destroyed some of my vertebrae. People just have a hard time grasping that fact that I can be partially paralyzed and have a variety of other problems, and yet be able to walk (albeit with a cane and quite a limp). I know my FIL thinks saying stuff like that is encouraging me, like his saying it and thinking it will make me better. I've been told so many "remedies" that if I would just do them I would be healed. I've come to realize people are just ignorant and really don't know what they're talking about. But those of us who do have and SCI DO understand. What anybody else says doesn't matter.

Greybeard---I LOVE the poem. It really says it all.

Sandy

[Quad65]

Tell the fools to STFU. I doesn't matter how you got there, but where you are. And now what you do with what's left.

[wheeliebar1]

greybeard, on Feb 14 2010, 10:21 AM, said:

Tetracyclone, on Feb 14 2010, 03:31 PM, said:

write us a R&R hymn called WTF!

WTF
WTF am I supposed to do?
I'm so tired of hurtin' it's making me blue.

My back ain't bin broke but I can't figure why.
it sure as hell feels it and the docs - they all lie.

Spinal stenosis is what happened to me
Now I can't dump, have a shag, or even pee.

God knows what they learn, but the doctors don't help
They fill me with pills and just make me yelp.

They pull this and poke that and take lots of scans
then gather in groups and start ringing their hands

They dither and mumble and just cause delay
and when asked outright, say "We really can't say!"

"Let's open you up for a good rummage through.
We might even find we can mend you with glue".

I'm tempted to do it for the chance of a dump,
So help me, my friends, WTF way should I jump?

I LOVED this. I'm gonna share it with my neurologist lol

[ClaraTaylor]

wheeliebar1, on Feb 12 2010, 11:01 PM, said:

I'm tired of getting crap, even if it's jokingly, for not being a "real" SCI. I had a mass on my spinal cord from C1-T12 since January 2008 that was removed in November 2009. It took a looon gtime to get a diagnosis, and they still don't know how the mass got there or if it will come back. But the great news is that when they removed it I went from being functionally a C& quad to a T4 para. !!! I am SO TIRED though of people telling me, even if they are just "joking" with me, that I am not a "real" SCI. Because I didn't get into an accident. I deal with the SAME crap as everyone else, the same spasticity, nerve PAIN, B&B stuff, etc... My spinal cord is just as damaged as someone who fractured their vertebrae... mine was just damaged by a mysterious mass that almost killed me and also caused me to have hydrocephalus and need a shunt in my head. I also had a brain bleed from the hydrocephalus, which took away the remaining leg function that I had when it damaged the part of my brain that controls my legs.
Don't get me wrong- I am SO thankful that for what I have. I could have died from this mass, as it went all the way up to C1 and caused hydrocephalus to boot. I just don't like people's "good-natured" comments of "oh, you're not a real SCI"

Thanks for listening

Just start to question their gender, I mean how do you know that they're not a REAL woman?

Failing that. Yell at their stupidity in a public place (cripples can get away with anything) - strangely satisfying (especially if they go bright red and leave).

[WildKat]

ClaraTaylor, on Feb 15 2010, 03:48 AM, said:

Just start to question their gender, I mean how do you know that they're not a REAL woman?

LOL! In a way I can't wait for someone else to tell me I don't have a "real" sci so I can use this!

[wheeliebar1]

WildKat, on Feb 15 2010, 08:32 AM, said:

ClaraTaylor, on Feb 15 2010, 03:48 AM, said:

Just start to question their gender, I mean how do you know that they're not a REAL woman?

LOL! In a way I can't wait for someone else to tell me I don't have a "real" sci so I can use this!

I'm with Wildkat. DEF gonna use this the next time someone says I don't have a REAL SCI... Thanks!!

[Ratticis]

I'm somehow likening this to someone from Brazil being called Africian Americian

[S&W Winger]

Back in my trucking days, all the guys would be on the CB radio, bi+ching about the d@mn snow up around the Great Lakes area...


...I'd tell them not to worry, that it wasn't real snow, just Lake Effect Snow...




WHO are these people that say this crap to you????

This post has been edited by S&W Winger: 18 February 2010 - 08:10 PM

[wheeliebar1]

Honestly, mostly it's people who have had a SCI as a result of an accident. Interestingly enough, most them say that if there was a "magic pill" that could take away their SCI, they WOULDN'T take it!! They are happy with their life being paralyzed, and prefer it to being AB. What do you think of this?

[edlee]

Seen similar written here, too. Might be length of time injured,, or age when asked. I'm only five years SCI,, but an old goat,,, but I'd take that pill in a New York minute. I may be happy and I may be content,,,, but if I can be that way crippled, you can bet your sweet ass I could be that way standing up.

Similar feelings are sometimes seen from completes toward incompletes. I sometimes catch myself at it,, but it's just jealousy, in my case. I'm still happy for them,, I just envy them.

It's just semantics, anyway,,,, all about how one chooses to define certain terms.
ed

This post has been edited by edlee: 20 February 2010 - 12:08 AM

[spot]

Quote:
Honestly, mostly it's people who have had a SCI as a result of an accident. Interestingly enough, most them say that if there was a "magic pill" that could take away their SCI, they WOULDN'T take it!! They are happy with their life being paralyzed, and prefer it to being AB. What do you think of this?
end quote (I deleted the quotes - sorry)


Maybe it is how they cope. Since there is no such pill, maybe they don't want to think about being AB. But this is just pop-pyschology stuff.

I understand your frustration. I could be said not to have a "real SCI" either. I had an angioma in my spinal cord at C1/C2 that compressed the cord and bled all over it. No accident, so it took 18 months for the doctors to figure out that there really was something wrong. They didn't believe me until the cord died and I stopped functioning. Then they did the MRI. Even the docs won't say I have a SCI. But the cord is gone/dead according to the MRI. I have the spasticity and mobility problems. So what else could you call it?

You are not alone. There are others like us in this group. The folks here are really helpful. Not to mention they have great senses of humor: great poem, GB; hilarious suggestion, Clara!

This post has been edited by spot: 20 February 2010 - 06:30 PM

[-KatNip-]

I'd say for the OP, though the injury was due to a mass, not a an "accident" - it's called SCI - spinal cord INJURY.. nerves got injures.. not an "SCA" spinal cord accident. Sounds like your injury is plenty REAL! Glad you got more function back that you started with!