cripswithwhips

angel13666 @ 11:39 am: I am having to be cut in half . having a Hemicorporectomy
Hello Everyone, I am writing this to help people catch up with what is going on with me.
You might have read that back in Oct i got sick and had to go to the hospital. they found that i had Osteomyelitis in my hips, pelvis and a few vertebrae. Up to the L5 vertebrae). I came home med of Nov with an iv and taking medicines. Well i kept having sinus wounds popping open so on April 5th i came to Albany medical Center in Albany NY. After looking me over and finding out the same things. The recommended i get an operation called a Hemicorporectomy It has only been done 60 times in the world. I was told without this i would die soon from Osteomyelitis and or MRSA going to my heart and or blood stream and die or it would eat more and more up my spine till all i could do is lay and move my eyes. I have been in a wheelchair since age 2 but done well. Had 3 kids and a normal life,hard and abusive at times but still normal. 6 years ago i meet Lord Laraby and we live together he is my Master, Friend, Doctor, you name it. He has done wonders for me over the 6 years. but anyways back to April 5 so they offer me this Hemicorporectomy operation which would mean rerouting my bowels to my stomach and rerouting my urinary to my stomach. Then they would remove all of my from L5 vertebrae up. Would be my legs, hips, pelvis, butt, anus and all sexual parts inside and outside. I have decided to have the operation. I truly don't feel i have a choice. I have my hard times and i cry a lot but i know i can get through this. Master is being wonderful and helping all he can. I am still in the hospital . Aprile 13th they will do the first part of the operation which is the rerouting part then in May the Hemicorporectomy will be done and maybe my breast pulled up and made small a few weeks after that. Then once held on to rehab for 2-4 months. I have decided to keep a blog of this journey as i could not find any from others to help me through this i want to leave something to help the next person. I would ask that you please visit my site and join up . you may leave Messages there . It is hard to get to Lifejournal but i finally got here. Hospital fire wall is odd.


http://hemicorporectomy.org/
Angel
I hope to hear from some of you. once you sign up be sure to verify your email addy.

hawkwind2000 @ 05:49 pm: Well, this sounds likely
So i went to my rheumatologist on Tuesday, and after hearing what the trial week of prednisone did for me, she still wants to put me on plaquenil. Still not sure which auto-immune I have, but she thinks it sounds like Sjögren's Syndrome. I'm dubious, cause I don't *have* dry mouth (except I've been waking up with it more, but I figured that was cause I was snoring a lot more due to the muscle relaxants). But one of the things about plaquenil is that it can fuck up your eyes in particular ways. ANd so off I go to the opthalmologist to get baseline observations so taht if it starts to fuck up we can stop it fast.

And so there is the doctor, staring at my eyes with a bright light, and says, "You have dry eyes."

o.O

"I do? I've never noticed."
"Yep. Tears aren't quite covering the eyeball."

Which just goes to prove taht my perception sucks. Awareness?

So I guess I'm wondering if anyone else here is on an immune-suppressant drug, and how, if at all, it affects what you do for play. I'm sitting here envisioning all the things that are a bad idea to do if your immune system is sluggish/depressed, starting with 'staying up late' to 'stressing the body' to 'breaking the skin' to 'interacting wtih lots of people' to 'fucking'.

Gaaaaaah!!!!!!!!!!!!!!!!!

badgerthorazine @ 12:12 am: Trying to figure out some alternatives...
Bondage is fun and all that, but I've got wonky and fragile ankles. I'd love to have them properly fastened when I'm in the mood to be a bottom, but without issues of spraining randomly, etc. Any suggestions as to what I could use? As for topping, I'm starting to think that some of my arm pain might not be normal, but have no idea where to go with it. I *know* my leg pain comes partially from lipedema and mostly from multiple arthritic joints.

Also, with regards to my lipedema, I'm trying to find out things that will be kinky without my legs being damaged or bruising inner structures that I need to keep intact. (there's also an issue of the lipedema causing my legs to be extremely large, so sometimes ideas that work for other folks don't generally work for me. :P )

I'm 41, bi, poly, pagan, switch, and a hug-a-holic. :)

hawkwind2000 @ 06:02 pm: *tap tap* This thing on?
So I've been recently diagnosed with fibromyalgia, and it comes on top of tendonitis in my dominant arm, progressive weight gain, and growing mobility problems. So I figured, hey. If there's a reason to talk about it, there *must* be an LJ community!

Indeed, here I find... three? poorly_bdsm hasn't updated in 119 weeks; cripswithwhips hasn't updated in 22 weeks, and kqwd hasn't updated in 19.

Does everyone actually have a *gasp* life, or are we all too lame?

Or is there somewhere *else* you're all hiding that I haven't found yet, hmmmm? *peers around half suspiciously, half curiously, half hopefully*

My journal is public, so y'all can go look. Poly, kinky, switch, bi, (tabletop, not computer) gamer, speaker to geeks. I'm weirder than I am queer, but I'm there, too. I recognise some names in the member lists, but only from around LJ... I don't post much because I try not to whine...

(xposted to the above-named communities)

not_in_denial @ 10:50 am: Crossposted to cripswithwhips and kqwd.
So, last Friday I was lucky enough to learn rope suspension through a private class with Bridgett Harrington. Four suspensions in three hours, pretty intense stuff, and it was awesome.

It's Wednesday now and I can still barely move. I suspect it will be a few weeks before I'm ready to perform another suspension.

Do you ever find yourself frustrated because you've found your niche, so to speak, something you absolutely love to do, but because of your condition you're unable to do it regularly/at all? How do you deal with that?

Also, does it annoy anyone else at how practically no play space or dungeon seems to be wheelchair friendly? Or is it just here in Melbourne that that's the case? I had to walk up two flights of stairs before I even got to lay my hands on any rope.

juniper_j @ 07:00 pm: Hello all,

I am doing my MA in Disability Studies. I am just about to embark on my major paper, so I need to start looking for some references.

I am doing my paper on something related to kink and disability. I haven't solidified my proposal yet, but I want to do a couple of things:
1)Look at how so called "sex positive" spaces, like Kink/BDSM communities are or are not accessible to folks with all types of impairments and disabilities
2)Look at the subversive power of BDSM/Kink, either metaphorically or literally to work through trauma and oppressive norms (ie I am really interested to look at subverting power dynamics, to play on the idea of "weak" PWD are and how this can be reclaimed through scenes and BDSM rituals
3)How Kink/BDSM work can be combined with the power of narrative research, using an emancipatory framework

This is a basic idea of what I am thinking of right now. I'd really like engage in dialogue, and please if you could, share any of your references. I haven't come across anything written that is attentive to both kink and folks with disabilities, so at this point, I'm open to any type of sources.

Thanks!

(will cross post.. not sure where as of yet...)

not_in_denial @ 08:22 pm: Intro :)
Hi everyone, the community seems a bit quiet but I thought I'd join anyway...who knows, it might liven up again, right? :)

Anyway, I'm Erin *chorus of hi Erin* and I'm 19 years old, genderqueer, dominant, and happily living with my bratty femsub in Melbourne, Australia. I have chronic fatigue syndrome and often get annoyed at its conspiracy to not let me have all the scenes I want or let my scenes last for as long as I want them to.

So...yep. Hi. :) Didn't come with a specific comment, just wanted to introduce myself.

masterjim @ 02:27 pm: Hello .. I would like to introduce myself since I just discovered this community ..

My name is Master Jim and I am a 36 yo male Dom ...

I am also an MSer .. I was diagnosed in June 1993 with RRMS ... I have used Avonex, but currently use Copaxone.

I am very interested in continually learning more about BDSM and, of course, MS ... Would love to hear/read stories about how others in the lifestyle balance their MS and BDSM activities ...

Master Jim
bdsmjim@yahoo.com
www.clik.to/bdsmjim

Inspirational Information

jettboi @ 04:43 pm: Desperately looking for resources and help
My name is Jesse and I'm 27. I'm desperately trying to find someone who is an FTM and is either pre-testosterone or post-testosterone. I was scheduled to start testosterone last Monday but was told that I have to get checked out for MS. Including my father, 5 members of my immediate family have MS. And I can see that I have some vague symptoms similar to my father.

I'm freaking out in more ways than one. And could really use help. I've tried to do research on-line and haven't come up with much. I know that there was a study on hormonal influences on MS. The results of that were not promising in regards to my need to be on testosterone. But I need more resources. I need to educate myself but I don't know where to start. And I'm afraid that I'm the only transgendered person IN THE WHOLE WIDE WORLD that is struggling with these two issues at the same time.

If you're not comfortable responsing in a comment, pleasepleaseplease e-mail me at:

jettboi77@planetout.com
or
jkenny5913@yahoo.com

If one address doesn't work, the other will.

aillecat @ 02:45 pm: *sigh* work is really upset about all my absences....

They've officially warned me... so now I had to disclose, a week earlier than I wanted to, since theres no HR person there....

They are atleast 17 full time and at least 15 contractors or part-time employees....

So I'm pretty sure they have to make accomodations... question is, what am I to expect from them?

They maintain a systems administrator has to be on-site, yet there is nothing but desktop support (which can still be done remotely if I need to) that requires a physical presence. They just want someone to yell at when something is going wrong....

How do I express that that convenience for them is not guaranteed them under the ADA?

About the only accomodation needed right now to make sure that I can keep performing at a high level is to go easy on scheduling, allow some late days, or some days from home... in order to not put any more strain on something eating into every single f-ing area of my life right now.

All I want to do is go home and sleep... will I? probably not I'm stubborn, but I'm done, tired, and worn out.