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    I do not know hwere to put this or what to really call it...

    but, here is the thing. God, I feel like I am whining, but to put it in simple terms, ever since this has happened to me, I have NEVER been treated like such crap as I am now, and I have tried being optimistic, looking at myself for incurring this wrath or whatever....

    Well, I have been promised by multiple agencies adaptive equipment, and the lead around Robinhood's barn and never got anything. I ended up with a wheelchair that is inapprpriate for my lifestyle or where I live. Its basicly useless. (Medicare spent $32,000.00 and it just sits here) I have been abused by PCA's, doctors, nurses (yes, one deliberately yanked on my foley as hard as she could because she was PO'ed because she did not know how to insert it correctly, I'vwe had another tear my skin tearing tape off me.) I have been robbed multiple times by PCA's. I have had my doctor kick me to the curb and not refer me to anyone because I required to much paperwork...just left me abandoned, and I have had unreal problems finding a new doctor, or even getting there. I was totally ripped off by a van dealership and first it was a lawyer dragging his heels, now its the courts taking forever to give me a court date. I have been accused of lying by the electric company that I had a severe disability, and they almost refused my hardship application. I had someone deliberately remove the pest repelent device I had installed and almost all of upstairs was destroyed by mouse urine and fecies, chewing etc. I was at one time dumped off medicaid and have incurred a mess of medical bills that I am going to be paying off for years.(I am now back on it but am stuck with the bills) I have had several agencies try to stuff me in a nursing home...I hate institutions and am almost militant about my hatred for them, I've even dumped "friendships" with people I knew for 20 years over it. Its been one thing after another, and I hate getting rude with people, and hate sounding like I'm having a major pity party, but I am going to be blunt...people have been in general AWFUL to me. Have others here been treated like nothing but a blob that has no real right to exist, or have any inteligence at all, or try to get ahead and function as normal?

    I get frustrated with the disability, but I can deal with it, its people that have really stunk. I can say a few good friends or social workers have been of some big help, but they cannot do everything or solve every problem. They are only human. But what really puzzles me, confounds me and really hurts is that I get treated like a nonentity until I get a lawyer, the police, a legal advocate, or sue them that I get any real action. Why? What can I do about it?

    I hit bottom today when I realized and saw what has been done to me. I have tried to get over it and celebrate the season with decorating for
    Christmas etc. But as I clean up I keep finding more and more and more....Am I crazy, or a winepot...or is this normal? What is wrong? Me? I've done all those recomended things. I have stuck to my ground and been persistant. I've reached a point where I no longer can take it. I guess you could say I am at a fork in the road and do not know which way to go.
    I cannot afford to replace the items. I cannot get out to get the items. Some of the items I had taken are not available in this country.
    Also why are PCA's not trained, licenced, or have some way of tracking them and forcing them to be accountable. These are people we let into our homes, trust with our bodies adaptive equipment, and our medical devices and supplies. They should be required to be accountable....someone please explain......
    If this sounds like a rant or ramble, it sort of is, but also I am looking for an answer, and if those that have high level injuries especially, can add to their experience and what they did, it would be a huge help.
    Disability is not a medical problem with social issues, but rather a social problem with medical issues.
    Franklin D. Rosevelt

    First off instead of Tweety it should be Sweety. It isn't you at all, what you feel is very appropriate and understandable. You're not going crazy and your not just ranting. Your not a rammbling whiner at all, as a matter of fact you sound very strong and very sain. There's nothing wrong with whining anyway, I'm a professional at it.

    That bitch that hurt you by yanking on the catheter needs her ass ripped out her throat. Reading that infuriated me, what a piece of shit. My god where do these people come from? They need to be buried back under the crusty worm beds they crawled out of. Ok, I'm done, sorry, actually no I'm not I meant it. That bitch. Is there a maximum swear per thread we're allowed? I might use that ammount up here.

    I've read your previous posts about your PCA's and how they've treated you and tried to weasle their way around trying to get away with bullshit under your nose. They are useless nobody's and I'm glad you got rid of them. I hope they go nowhere in life from this point on. I'm glad you called the police and I hope they at least keep their names on file incase more things come up with them with other people.

    Your old doctor sounds very lazy and he shouldn't have gone to school to be a doctor if he didn't like paperwork, unreal. What a tool he is.

    I agree 100% about nursing homes, it's the last place you want to be and shouldn't be if you have a home already.

    About being rude, I hear you there, I also hate being rude. It seems if you aren't being straight forward and demanding people will walk all over you. I am now very different in the way I talk to people. Before when I was able bodied I was 190lbs fit and 6'3" so looking down at people I didn't need to ask twice when I wanted something. When I was injured I noticed instantly how people just started deciding things for me. I almost had to say "hey, hello, i broke my neck not my brain you dickhead" for anyone to listen. It's perfectly fine to get what you want, don't worry about anyone else but you.

    I'm glad that you have a few good friends and a couple of social workers to talk to and help with a few things. At least there are a few sain people you can be around to help with your nerves.

    The reason why a person usually has to go to such difficult lengths to get people to smarten up like call the cops or sue is because many people out there are in it for them and nobody else. It's very sad and the people that try to take advantage of others are pathetic for doing it.

    The holiday season is when all the things piling up on our backs really start to be too much. My feelings get really strong around this time and I don't feel the greatest because things around this time usually aren't the greatest. Actually almost every year around this time things go to shit. Buuuut I guess I crawl out of it and make it to the next shitty season. I know you will too.

    I really hope things start to change for you Sweety. I know you deserve it, you've been through enough to recieve a little break.

    Take care.
    Last edited by NorthQuad; 3 Dec 2005, 4:03 AM.


      Thanks, Northquad, I am so sick of being treated like I did something wrong, and I didn't. I just wish this whole thing would end. I do not want to turn into a "bitch", but its getting so I dread waking up in the morning....I cannnot live like this any more. I just wish I had not made it sometimes, and its getting so I wonder if I can hold on any more. I just want to know how to stop this. If I keep my mouth shut they just keep on doing this stuff. If I do something about it I get told "Oh, there is nothing I can do." I just want so badly to retaliate it isn't even funny, and be vindictive, but that doesn't even help. But why is the PCA program set up so that we are so vulenable? They should be licenced, and registered so there is a safe way and relaiable way to check them out.
      Disability is not a medical problem with social issues, but rather a social problem with medical issues.
      Franklin D. Rosevelt


        What about asking them to get a police clearance to check for possible criminal background and asking for references? Speak to someone they've worked for before?
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12


          This one cleared all that. I used to have my licence to do Cori's and did them, but it really was no help. This is because I found that the references would lie to get them off their backs, would be friends, and would act diferently in a place of busness vs someone's home. I tell you I have tried it all.
          I think the concept of the PCA program is wonderful, but as it is set up now, it sucks. I can no longer stand it as it is now. These people need training (I am not just talking about the medical stuff, but attitude stuff), licencing, and there be a board of registration and a real way to check these people. People without some god clearences should NOT be working in people's homes.....I cannot understand why there is not.
          Disability is not a medical problem with social issues, but rather a social problem with medical issues.
          Franklin D. Rosevelt


            Well my PCA program runs two different ways. You can either be with their company or by yourself. Meaning they can find people for you or you can find people yourself. If they find people for you, that means they are tied in with the company. So if anything happens they are liable for whatever they do. They also have to go through a training program before they get hired. But in my case I hire my own people. Luckily for me I had picked good people. But at the same time my father is usually around the house. So I doubt a PCA would try anything. Even when he leaves, they still treat me and respect me the same. For I had nothing ever stolen for I can oversee anything in my room. And anything of value is usually placed where it would be noticeable for them to take it. I also get the option to fire the PCA.


              I keep harping on this but the Govt. wastes too much money on disability programs that do very little to improve the lives of those with real disabilities.PCAs need paid better thus better people are attracted to the job.Now we get those that can't find work anywhere else.


                Originally posted by NorthQuad
                First off instead of Tweety it should be Sweety. It isn't you at all, what you feel is very appropriate and understandable. You're not going crazy and your not just ranting. Your not a rammbling whiner at all, as a matter of fact you sound very strong and very sain.
                I've been following your misadventures here too Tweety and Northquad really summed up the way I feel as well !! What frustration .... you need someone to advocate more for you ... is there no one you can trust to help you ... I'm afraid all I can do is send you some light and remind you you can rant away on us any damn time you feel like it ... we'll always be here. You just never know who might be reading and may be able to assist you or offer insight to some of your dilemmas .... maybe you and Jimnms should team up .... between the two of you you could write a book of misadventures and experiences .... and listen I'd invite you to come up here to the great white north but I'm afraid you'd need chains on your chair tires this time of year .... I'd much rather come visit you (and then I could kick some stupid pca ass ) .... Hang in there Tweety love!

                Hey I just had an idea .... maybe you could concoct some tasty little herbal remedy that would take care of all those loosers ...
                Last edited by Obieone; 4 Dec 2005, 11:56 AM.
                ~ Be the change you wish to see in the world ~ Mahatma Gandi

                " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
                Jane Siberry


                  Guess what reappeared today? All the missing stuff except for two window scrapers, the blank CD's and the tool kit that was already replaced. I also have some really great news....the guy who is supposed to fix my roof arrived....guess what it is and beleive it or not, its easy to fix? There is an area of sill that is rotted, and I have a broken rafter. He patched me up and has a jack under the area and is slowly jacking up the roof so the house is off the sill a bit so he can replace that bad section, and when we have a warmer day he is going to cut the roof, go in and sister up another peice along side it and then fix the roof. Then its on to the bulkhead.The jacking thing is done slowly so it will not damage anything. Its like a kid getting braces for his teeth, the wires are tightened every so often. This guy is doing all of this for FREE! Thanks for restoring my faith in humanity, Steve!, and the Knights of Columbus!!!!! He has pilot's licence to boot and he is so interesting to talk to! What a nice guy!!!! We were taking about tail draggers today and the airport I used to do touch and goes at!
                  I think after last night's little episode, I think the problems being gone for good, Things will go a little better. Also I have an advocate, Richard Chapman, who is doing some serious butt kicking as far as doctors are concerned, I was really feeling bad as I felt like everything was pileing up as I also am out of all my pain meds and antinflamitories. It seems stupid I have to get an advocate to do the basic crap...its infuriating and dumb!!!, but thank God for Rickard Chapman!!!! After the crap this creep was doing and calling me when I am attending to bodily functions while on the throne, and having to call the police to get her to leave me alone, and force her to stop trying to jigger with the payroll. I wasn't going to toke crap from her. Basicly I had hit a wall and would have thrown something at her if I had the chance to.....and the ability to transfer independently gone, really pisses me off so badly........why in hell hasn't someone inventented something at this point. In my opinion its unexcusable there hasn't been something invented yet beyond hoyers and transfer boards.......I hate needing assistance to get my fat butt out of bed....grrrrrrr..........
                  Last edited by Tweetybird; 3 Dec 2005, 2:43 PM.
                  Disability is not a medical problem with social issues, but rather a social problem with medical issues.
                  Franklin D. Rosevelt


                    A change is on the way

                    Hey, sweetybird I will be thinking about you, things will improve, just hang in there a while longer.
                    Last edited by jimrodd; 3 Dec 2005, 6:25 PM. Reason: failed to read last post by tweetybird.


                      Good, you did get a little bit of a break. That's cool that the guy is going to fix your roof for free. Yeaaah... so happy. I was really hopeing something would come along to help you in some way. Haaeey! Mabey I have magical powers and I sent some pixey dust your way, nah, I only seem to send rain clouds that bum people out.

                      How did your things re-appear? Did someone bring them back?

                      I hear you on not being able to transfer on your own. I hate not being able to get in and out of bed any time a person wants to and having to rely on someone to move your ass for you. A big Grrrrr... for me to.

                      If you have any more good news hit us up with it.


                        Tweety, Dave is right, we're going to rename you Sweety! It just pisses me off when stupid and uncaring people treat good people like crap! How I WISH I'd been in the room when that stupid woman yanked your Foley! She'd have been picking her teeth out of the wall! And those stupid girls barging into your house like that? How I wish you were my neighbor. You would not have needed the police after I finished with those two!

                        Again, like Dave said, it does seem like you just HAVE to be demanding to get anything done. I like to be nice to people too, but it does seem like the days of being nice and getting what you need are a thing of the past, even in little things in life, much less the big things. I don't know how many times my relative with SCI and I have said, "WHY are they doing this to us? We aren't asking for anything unreasonable!" Mostly that's been with bone head doctors who must have gotten their MD's from a Cracker Jack box! Been through meds things with "doctors" who just can't seem to understand that a spine that has been crushed and is now twisted like a pretzel is um...going to cause a person some intense pain! Been flat out told no--no Rx for you! So, then your'e off looking for another doctor, scared to death your'e going to get labeled as a "doctor hopper" and then NO ONE is going to want to take you on as a patient! Not long ago his urologist flat our refused to give him a Foley because he (the doctor) was afraid of the risks. My relative's body will not get on a cathing schedule no matter what he does. So, he goes through severe AD every few hours. Finally out of desperation we buy our own Foley's and take care of business ourselves. Then found another urologist who, thank God, LISTENED and agreed, that yep, at this point in time, a Foley is the best thing for you. Just LISTEN to us! That's really all we ask. Just listen. But, that seems to be too much to ask.

                        Everything that should be simple is not. We get the same supplies from the pharmacy every single month but every time you go to pick them up, they are frazzled and freaking out and trying to find the stuff you need like it's their first day on the job. WHY? This is a small frustration in the grand scheme of things and nothing to compare to what you are going through, but when it happens every single effing month and it's not the ONLY thing of that nature that happens, it REALLY starts to get to us. I think most people are just stupid and many are stupid AND uncaring. Common sense seems to have gone the way of the horse and buggy!

                        I am so HAPPY that you've had these rays of sunshine come to you in the form of your advocate and the guy to fix your roof! It's things like that, people like that, that give me hope that the ENTIRE world has not gone down the crapper and that there is hope! If you have to be demanding with the rest of the world to get what you need, don't feel bad about it. There is a big difference in being a bitch just to be a bitch, and demanding and taking what is rightfully your's to take. So don't you ever, ever feel bad for having to tell someone like it is! I know though that it gets so exhausting for everything to be a hassle. To have to fight for things that should just be a given. When I come up with the answer on how to fix that one I'm writing a book about and giving it away for free!

                        Hang in there Sweety and I hope that these rays of sunshine in your life now are just the beginning of a full blown sunny day!!! You deserve it. Please keep us posted!

                        ****And Dave, you are NOT a cloud! Shame, shame, do not say that!
                        "I just want you to know, it was the best time ever." J.F.F.


                          Hi Tweetybird,

                          I'm glad to hear that some things in your life are starting to get back on track. Seemed like everything was starting to dump on you all at once. That's particularly hard to take around the holiday season. I hate when that happens!

                          It's a shame you have that $32,000 wheelchair just setting there and can't use it. Can't you get the dealer who you bought it from to modify it so you can use the damn thing? Or trade it in for one that will work for you? Staring at that expensive clothes rack everyday would gnaw at me.

                          And speaking about gnawing, were you able to get your pest problem under control? Not those nere-do-well PCAs.... but the rodents? I've read those electronic pest repellers really don't work all that well but I could be wrong. It would be nice if you could get professional help in that regard since there's no way you can get up into the attic etc and do it yourself. Hopefully your new advocate Richard Chapman can make a few calls to the Chamber of Commerce or wherever and find you a pest control company that will do it pro bono. Waking up and finding a rodent gnawing on your toe wouldn't be cool!

                          I'd like to get a personal advocate to make phone calls for me. I hate talking to bureaucrats and office bunnies on the phone trying to get stuff done. When you kiss their ass you usually don't get anything accomplished and if you lose it and yell at them you're shit outta luck too! There's no winning with most of them.

                          I really feel for you guys (and gals) who can't transfer independently. Man, you must feel so trapped in your own house. I can't imagine having to rely on someone else just to get me outta bed so I can get a cup of coffee or whatever. Especially up north where the roads can become impassable and you can get snowed in. Even if you're lucky enough to have a good PCA they can always have mechanical car trouble or become ill themselves. I hope you have a few things close to your bed for emergencies like a small coffee machine and some snacks and medical supplies. And always have a fire extinguisher that you can operate close by. You could be stuck there for quite awhile.

                          Maybe your advocate Richard Chapman can find out about a lift that you can use by yourself. It doesn't sound like an impossible engineering task. I saw a lift on that new TV show that builds homes for deserving needful people. They put in a lift for a quad that had tracks on the ceiling that went from his bed to the bathroom. I don't see why they can't put a set of controls on the sling itself so you could transfer by yourself. I don't know how safe it would be to solo but if you're willing to try what's the big deal? Keep a cordless or cell phone handy. A cell phone would be best just in case the power goes out.

                          Sorry to hear about you and your estranged brother. Damn, in our condition it would be nice to have a brother who was an MD. Well, my brother and sister are both nurses and little good it does me. I hardly ever see them either. My brother won't even throw his own beer cans away so technically he's useless anyway!

                          If only you could find a strong trustworthy independent man or woman who needed a place to live. You could work out some mutually beneficial arrangement. There's someone out there that would fit the bill but finding just the right one is the difficult part.

                          Have you tried calling your Representative Barney Frank about any of your issues? He's a really good and very compassionate man. He's one of my favorite Reps to watch and listen to on C-SPAN. Rep. Tom Lantos (D-CA) and Sen. Byron Dorgan (D-ND) are two of my other favorites. Or one of your Senators Ted Kennedy or John Kerry? You have 3 of the most liberal politicians in the country right there working in your district!

                          I cannot get out to get the items. Some of the items I had taken are not available in this country.
                          I do most of my shopping online. For the first time in my life I bought a couple pairs of pants online last month. They fit and look sooooo good on me! There's not much that you can't buy online.

                          Hey, I'm about out of blank CDRs myself and was gonna order a 50 pack from Newegg. If you want, send me a PM with your name and address and I'll have them send you a stack too.

                          Take it easy.
                          "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria


                            Here ya go Tweety....


                              If you've been treated unfairly by DME dealers and/or docs, I would go and get a consult with a disability attorney, who may also be able to be your spokesperson.

                              As for your PCA's, are you hiring them yourself, or do they come from an agency? If from an agency, you have a course of action you can take, by reporting their behavior.