Just wondering...

[dark-blade.livejournal.com]

Is anyone else here physically disabled?

How doess it work with you? Do different people have different degrees of it? Does it effect any of you internally in addition to externally? What do you do with different people if they aren't disabled and then when they try to front it's all grr...



Somehow I don't think that clarified the question...

Comments

[chezames.livejournal.com]

Depends on what you mean. We have physical disabilities that keep us from working, but are not wheelchair bound or anything like that.

[dark-blade.livejournal.com]

Oh. Uhm... hrm.

I really ought to have phrased that better.

I'm just trying to figure if..

Okay, it'd be really nice if someone better at talking would cooperate here...

Yeah. How do you make it work? Does it effect everybody the same? If we can be so nosy, what is yours?

[chezames.livejournal.com]

I guess our disabilities would be "physical" in general. We have little coordination in/control over the left side of the body. We also have severe balance problems, low vision, and deafness. The coordination and balance seems to be worse for some than others, altho it's a body thing so everyone has some degree of trouble. Eyesight and hearing don't change from person to person but some seem to cope and compensate better than others.

Not sure if this is what you were asking, but I hope it helps anyway *G*

[qilora.livejournal.com]

yes.

our body has muscular dystrophy and a seizure disorder..

Ulla & Co.

[http://users.livejournal.com/_the_little_one/]

we have some stuff that is prob arthritis

but the stupid body doc keeps thinking it's depression symptoms and not listinging

before the other stupid body doc thought it coudnt be arthritius because we were too young

then we dind't have insurance for years and years and years

now we have medicade and antidepressants that work and guess what! the kneess still hurt! ane now the hips and sometimes sholsers and writs too! so she wrote us some meds

i want a new body doc

one who's not a stupid head

sometimes tal forgets the body can't do stuff and usese it up to fast or starts to do stuff it can't do at all

that makes problems but sometimes she can get it to do stuff for a little bit that we are afraid to try, but it always makes us reall tired hurt the next day, so it's for emergencies - kind of like tal is sort of (hee hee) - she's not really just for emergences amymoe, but she used to be

[aliasalixx.livejournal.com]

Ask about juvenile rheumatoid arthritis. My sister has it and was diagnosed at a rather young age.

[http://users.livejournal.com/_the_little_one/]

wren (one of us) says there is a family history of this

stupid hmo and medicde docs

[aliasalixx.livejournal.com]

Yes, the body docs are pretty stupid sometimes. :) Good luck!

[bekkypk.livejournal.com]

Urk. My dad keeps saying I probably have arthritis. There again he also claims his mother was a haemophiliac (she wasn't)
>_<
xx

[iamshadow.livejournal.com]

Our partner has juvenile osteo-arthritis that started being evident when she was only 12/13. I've heard of even younger kids having it too. But it took her a few years and several different GPs and a specialist to diagnose her properly. Her first doctor kept telling her nothing was wrong with her, even though she was in agony trying to walk. (It started in her toes, which made walking/balance very painful.)

[ksol1460.livejournal.com]

We once had a friend who was diagnosed with arthritis as a six-months infant. She was treated for it right away. She moved a little stiffly and had difficulty using her fingers but was mostly all right when we knew her. She had medicine and stayed away from certain foods.

[dark-blade.livejournal.com]

... that doctor's moronic. I was diagnosed with Juvenile Rheumatoid Arthritis before I was in kindergarden. There are a number of blood tests they can run and look at how your joints are doing and movement. If THOSE show negative, then likely not. How old are you physically?

[http://users.livejournal.com/_the_little_one/]

37

but she didn't do any tests

non of them ever did

i get to change docs in either march or april i just don't know who to switch _to_

- wren (and kary, and tal - all VERY FRUSTRATED)

[dark-blade.livejournal.com]

*facepalm*

I dunno. You might need to try to get a referral to a rheumatologist. Howver, whatever general doctor you go see should be able to order the blood test to see if any of it shows there, and probably the x-rays too. I'm not sure if osteoarthritis shows on blood tests, but some of the markers for RA do.

[shatterstorm.livejournal.com]

If you're switching docs, you might be able to interview one or two. See if they're the kind who'll listen to you.

I tried several until finding one who took the joint pain, exhaustion, and occasional fevers seriously. Turns out the body has an immune system problem. Now we've got a rheumy who treats us wonderfully.

Also realized that when we're having internal communication problems the health issues often get worse.

[tir-nan-og.livejournal.com]

Didn't know you had m.d, Qilora. Just wanted to say I hope I haven't offended in any posts where I mentioned my friend whose kids have it, and her different emotional reactions. She takes it very hard because her older son will quite likely be unable to walk soon from the looks of it, but I'm sure that is not always the case..I hope we haven't put our foot in it because I know we often do..
Morpho/Tir

[qilora.livejournal.com]

no darling, you needn't worry.. first of all, we happen to have a very good sense of humor and are usually among the first to stick our foot in our mouth becuase of our "irreverent" humor, and so we tend to just not take things to hyper-seriously when friends are rambling/venting about anything or anyone else.. and don't tend to personalize it all "omigod, she was bashing women, she must *hate* me!"... ;-)

we have a couple "no-no"s, i.e. the Judaism ;-)
but as long as someone doesn't lapse anti-semitic in our presense, all is copacetic...

and other than that, we had actually noticed your posts re:"that gf" and just never seem to remember to comment hahahah... hope you don't hate us for never commenting anymore... we're still here, just rather quiet as of the past couople months...

Ulla & Co.

[tir-nan-og.livejournal.com]

Naw, I don't hate you for never commenting anymore Qilora, just as long as I know I'm not actively disgusting you, as I'd hate to do that. I'm happy to be able to still read you.

[strangelings.livejournal.com]

Yeah, we've experienced this. I have- well, *something* that's quite probably a form of arthritis, and some people in here are better able to handle/work with it. That's generally true of physical stuff. Although- I have tendinitis in my shoulders/back, as well as some unknown serious problems w/my shoulders and nerve pain around there- and THAT- sometimes people in here will come out and instantly that'll act up, or occassioanlly someone will come out when that's going on and it *won't* bother them. I think that probably has a LOT to do with muscle tension and stuff like that in people in here.

I do know some of us are much more or less aware of body pain/feelings in general, which plays a part in these things. And then there's body memories *sigh*

[thesaturnsystem.livejournal.com]

Well, we have some physical problems, but not quite enough to qualify as disabilities, I think. (The body is hypoglycemic and has a minor heart problem) - Both effect all of us though, regardless of who's fronting.

[bekkypk.livejournal.com]

We don't have an actual disability, but we have weakness in our joints, we have very cruddy eustacion tubes (tubes between the throat and the middle ear - so everytime I get a cold we get stinging ear infections) and for the last 6 years our eyes have been getting progressivly worse at seeing distances. On bad days I can't see anything more then a metre from my face clearly.
I don't think it changes for us - i think it is more physical limitations of the body then to do with what soul's where :)
xx

[judiff]

we have asthma. And we had a detrched retina bceos of latice degenration in our eyes which was fixed with surgery but there's still degeneration in the vitreous (the gooey eyeball stuff) so we see lots of flashing lights and floaty things (all this is like a slightly unusaly complication of bad short-sightedness).
It seems prety contant no matter who is out.
We also have nuro-cognictive disabilities - dyslexia dyspraxis and NLD (non-verbal leraning disability which is an autistic spectrum disoder). We all have them but they vary a little bit depending who is out.

[tir-nan-og.livejournal.com]

One of us who fronts almost constantly has very bad asthma. Sometimes I wish we could have others front permenantly so that we wouldn't experience that.
Aside from that, it's all neurological or emotional stuff. Morpho, who is the main fronter, is autistic. The others are affected by this too, but tend not to act or think of themselves as someone with autism..that is, they will be more outgoing and seem more 'normal' in a wierd sort of way, but will also have sharp limits in their social abilities and ability to be functional out in the world.
Roman seems to have Borderline Personality Disorder. None of the others do at all.
Hansen walks with a limp,for some unknown reason. None of the others do.

[etana.livejournal.com]

Wierd - a lot of folk seem to have asthma - I also do, but it hasn't flaired up in almost 10 years - now the past 6 months full-fledged asthma flaired that even I feel and experience (a rarity).

[parisstar.livejournal.com]

Magan - Asthma, Arthritis (which two surgeries may have been advoided if we didn't have a stupid head body doctor) and little bit of hearing loss, especially in her left ear. Then gets all fainty sometimes.

Jenine - Needs glasses, or she's useless for seeing anything.

Foré - Ulcers or something, haven't had a body doctor look at her.

Mel - She's constantly depressed, but physically is well.

Chris - Breaks bones, but that probably just cos he's really rough.

Any others seems to be okay when they front.

[ex-senza6.livejournal.com]

We have CFS/ME. The physical symptoms affect us all pretty much the same, but some of us seem better at coping with them than others, if that makes sense.

As to affecting us internally, sometimes the tiredness and brain-fog can screw up our internal communication and relations with each other, if that's what you mean?

[ex-senza6.livejournal.com]

we seem to feel ourselves becoming more and more invisible, with each new label!

hey, we're nonexistent people with a nonexistent disease! ;)

[ksol1460.livejournal.com]

Nothing major. Bronchial asthma keeps us from anything but very moderate exercise. Fibrocystic breasts -- they're not huge but they weigh a ton and affect our back, further keeping us from getting much exercise. We're going to have surgery for this. Slightly damaged disc in our lower back caused recent nasty bout of sciatica, cured by ordinary chiropractic (about ten sessions). As the body gets older, some arthritis in the hips and knees.

How do we handle it? As best we can. Try to eat right and take vitamins and nutrients. Wear the right shoes and bra.

What do you do with different people if they aren't disabled and then when they try to front it's all grr...

Grrr. YES. We have put up with some of this stuff our entire earth life; many of us didn't understand the earth body was more limited than their own and thought we "weren't trying hard enough". The asthma wasn't diagnosed until we were about thirty, and our inability to do what other children did easily was put down to laziness. The things we could do, we did, and still do.

[dark-blade.livejournal.com]

We've noticed that the kids hurt even worse when we're doing physically worse... so they are less likely to front then. There are a couple who seem to require more energy to be out than others... at times our shell just can't physically support them being out, particularly not by themselves. But then, these are also the same two who have, on emergency occasion, been able to do something past our standard body limits. These days we're in a wheelchair a lot, particularly when going out and about, and all the joints are fucked up, and we have chest pains and breathing problems at times. (Being a DD/DDD isn't helping the back either. >_<) I'm the only one with the same present health internally though... the kids have problems on occasion, but not all of them. The others have their own problems, but they aren't due to shell/body.


Y'know, at some point we're going to frigging remember your body's sex correctly... have we just talked to boys more?

[ksol1460.livejournal.com]

Yes. We do have some lady frontrunners and we do have icons for them in case they want to post to LJ but usually they don't.

Hey, if Jay has his way about it, in a few years you'll be right about our body's gender. *grins*

[dark-blade.livejournal.com]

Aha!

Thanks, that does clear that up then. Generally, if I'm talking to someone who's not the same general appearance and gender as the body, I match with that as opposed to the body. Now I know why I had a hard time keeping it straight. :)

[ksol1460.livejournal.com]

Most of us look very little like the body. On our LJ icon page we have noted which icons really look like the people they're attached to. We prefer for people to think of as our real selves in our own bodies. :)

[dark-blade.livejournal.com]

That works well then :)

[gia1977.livejournal.com]

I'm deaf

[bizamoogie.livejournal.com]

i have autism, tourette syndrome and some weird thingie that makes me pass out.

[seraphimfell.livejournal.com]

I have arthritis and a few joint problems, one of mine doesnt actually feel it as much as the others, and another one feels like its a pain in her stomach more than in her back (referred pain). So sometimes the pain is crippling and other times it's like seeing it through a filter.

Hope this helps I think that's what ur asking.

[sethrenn.livejournal.com]

Nothing that really limits our range of motion, unless you could a visual processing disorder (I really can't remember what it's called) that makes us see two of everything, so we have almost no depth perception-- therefore we can't play any sports which involve having to catch or throw balls. But often people run into the problem of the body not being as strong or physically fit as they'd like, or enough so to do things people can do in their own worlds. We seem to have different limits for things like endurance and pain tolerance, which we think is psychosomatic.

Other disabilities: we have some form of high-functioning autism-- people vary in how and to what degree they're affected by it (for instance, some of us have trouble putting the parts of an image together and seeing a whole picture that makes sense), but nobody can shake it off entirely. None of us can make -prolonged- eye contact, although some of us can make it for short periods of time. We've also got some sensory issues and things.

[etana.livejournal.com]

I am legally blind and have congenital glaucoma. it's rough - because each of us have differing levels of blindness - me needing bifocals (which we cannot afford) and others hardly needing glasses at all. The really hard part is the fake eye (we have 1 fake eye, 1 real eye) - the kids used to pop it out. Kids meanign child alters/younger alters/persons/selves, whatever.
It's hard to go to eye doctors because of this, because the "switching" always happens and doctors get really confused, and often peripheal vision/field tests come out innaccurate because the stress and fear of the test causes switching which causes discrepencies in the test.
It sucks. That's about all I can say. I haven't really explored it further.