A tough question to ask (for me)

Jimmy,

When you say "are we considered handicapped?" who are you thinking of as doing the considering? If you mean legally, technically, yes. We can sue under the Americans with Disabilities Act if there's discrimination for having an ostomy, and we are entitled to reasonable accommodations (although if one is healthy otherwise, hard to know exactly what we'd need.... but certainly to use a handicapped rest room to say change a pouch in an emergency).

Here is the definition of a disability:

An individual is considered to have a disability if the person has a physical
or mental impairment that:
• Substantially limits one or more major life activities
• Has a record of such an impairment
• Is regarded as having such an impairment

I guess we are substantially limited in being able to sit on the toilet and poop, although we have a perfectly good alternative.... but certainly some employers et. al. could regard us as being more impaired than that and discriminate.

Here is a brochure from the United Ostomy Association http://www.ostomy.org/ostomy_info/pubs/uoa_brochure_discrim.pdf

Is that what you were looking for?

Wow, reduced museum tickets -- I bet everyone's going to want a stoma now!

Is healthy 0% or 100%?

Very interesting, and new to me.... so you're 70% disabled for having a stoma and then are you back to 0 with a j pouch? That seems like it was made up by someone very squeamish about ostomy bags.... seems it should depend on the individual, as there can be issues or not either way (not that I would want to deny you all those great savings on movies and all....)

My status may change after takedown, but I may still be considered handicapped to some degree. I don't know the details yet. I've actually never ordered the handicapped person's ID card,so I never used it for these discounts.
(Besides, I have a press pass, so I get into museums for free anyway ;-))
I could have had handicpaeed status since my UC diagnosis, but never bothered. While I was in the hospital for my collectomy, the hospital social worker came with all the forms already filled out, and I thought it might make life easier in some ways to have the status (which I have officially but never presented it for perks).

A thought I am having right now may not make me popular here but here goes just the same:
Jackie, you must have some idea how much college is going to cost. Or any other kind of education and I do not think you want to stop at high school. Is it really so terrible if you apply for government benefits due to UC sufferers, keep the money in a savings account and use it to pay tuition or buy books or whatever for your further education?
Would that really make you dependent on the government, or give you a sense of false entitlement (which would of course not be psychologically good for a person who really has barriers to get through).
Or, would you be taking money from the system that you got for one reason, and then turned it around and used it for something that really does bring your life much further? Money is energy and you can change things depending on how you use it.

Bluegrass, I'm a science writer and I create the publications at a research institute (my job). Magazine editor in the past.
I never studied science, but comparative religion, and my boss actually appreciates that I see theosophy in physics.

Jackie- I live in Illinois and I applied for social security dissability because of my butt wound. I cannot sit, at least confortably now. I also mentioned that I had an ostomy in hopes that would help my case since all of my past work experience is heavy lifting and climbing(200lbs+). I can no longer do that kind of labor anymore. Anyway they wrote "Having an ostomy is not a dissability" and denied me, even though I clearly wrote that I cannot sit down and have to lay on my side for the majority of the day because of my wound. I am going on almost a year and a half of them messing around and denying me. I have to go to court in February to prove my case.
I talked to my lawyer and they said basically you have to prove that you cannot function on a day to day basis because of your condition. Having UC or Crohns is a valid reason, but you must prove that you cannot work or function because of it being so bad.
If you can work for a few hours a day, let say selling movie tickets, you are not considered disabled by the state.
I'm so grateful that a friend is letting me stay with her for free and is packing me and my mom is giving me just enough money to pay my phone bill and car insurance because I had no money saved up when I had to have the surgery. There is no way I could live without the help of them.

about two years ago, I had a few conversations w/a doctor who has Crohn's and now counsels people on coping w/a chronic illness. After she had talked to me for a half hour or so, she suggested I try to go on disability (this would be private disability insurance that I pay for through my work.... easier to get).

My response was along the lines of WHAT??????? I'm not THAT sick....

So she pointed out how I'd been in the hospital, was running through the various dangerous drugs, was having trouble doing my job, etc.... she thought I needed a year out of work to rest and get better. I did check w/our HR office just to hypothetically find out how the process would work, but I had classes to teach, other things to do, etc etc....

And then what she proposed has pretty much been what happened.... it was Jan 25 last year that I spiked a 104.6 fever and had my first of four hospitalizations..... and perhaps my butt wound will be closed by Jan 25 this year, who knows.

I know what you're saying, Stripey, that's all. It's so hard when you don't really know if you'll ever get better ... I thought that if I stopped maybe I would never go back and then would just be a sick person..... but that's not good logic, as I was getting sicker and sicker with my overdoing things all the time...

Brian, that's just appalling that you haven't gotten disability. Keep us posted on the court date in Feb. It is so much harder when these things happen when you're younger .... I was able to get more established and had savings before things crashed for me. I'm glad you have people helping you out, though.

Jimmy, ditto on the borrowing sick leave thing -- just appalling. Hopping on a soap box here, but you'd think that in one of the richest countries in history we could figure out a better way than donated sick days....

B'Dereh, cool to hear about what you do. Do you write all your articles for work in German or are some in English too?

Bluegrass you really are a trouper.
I write the stuff in English because research institutes are international, and then there is always German versions. I do a lot of the writing, sometimes most of it, but not all of it. I also "have to" ghost-write things for the directors, so it's a lot of PR writing too.

I thought trooper was a purly military image, one of the troops, who keeps on and on no matter what, come rain, snow, high-water or surgery, and never quits.
(Well, let's allow ourselves to be big fat cry babies sometimes.)
I had a whining explosion last night to a friend that came over, like "I can't stand it anymore, why me, , haven't I hd aneough of this effing s h & t , groan and moan, and I can't stand it any more". And then of course the friend says, you've come this far, you've got just one more hill to climb, you'be been so strong and then the whole thing is over...
And then of course I complain, you don't understnad, you have no idea what this has been like ...
... and maybe a few other stressy, unpleasant, immature remarks
(becuase I've really have had enough and feel disconnected from my body. It's this think I have to feed and water and empty its bag and wash it and put clothes on it, and then it starts aching at night so I can't sleep well)
It really is hard for me to imagine that this will be over soon. I had planned on having step 3 this month, but that was so silly, I kow I can't possibly go back into surgery until I'm feeling top fit again.
Bluegrass, thank's for the compliment, considering I just blabble sloppily here!

So did you feel any better after your tantrum?

OK, I just looked up troop, which is from the same route as troupe, so I guess the military image is right too..... I'm no soldier though, that's for sure....

Remember that the feelings often get stronger when the end is closer..... now you can afford to have them, less of a need to push through indefinitely (i.e. less of a need to be a trouper....)

And you know what they say, "Man tracht and Gutt Lacht." No idea if my spelling is right, and for those who don't speak Yiddish/German, that means, more or less, "Man plans, God laughs" (a sentiment that many can appreciate, regardless of theology or lack thereof).

Ich wohne in Chicago. Meinen elteren haben in 1957 als Bamberg do gekommt. Ich habe schon veilen familie dort, in Hanover, Stuttgart und Berlin. Ich war schon elf jahren nicht dort fur uhrlaub. Veilen von meine Mutters famelie sind da, aber meinen Vaters sind allen dort. Und dir?