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

  1. #11
    Senior Member
    Join Date
    Dec 2004
    Alberta, Canada
    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.

  2. #12
    Senior Member WM's Avatar
    Join Date
    Sep 2004
    Everywhere the circus goes
    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.

  3. #13
    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

  4. #14
    Senior Member Jadis's Avatar
    Join Date
    Jun 2005
    Salish Mtns, Montana
    Here ya go Tweety....

  5. #15
    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.

  6. #16
    Tweety - sorry for the difficulties you're having.

    Couple of suggestions...

    1. Have you tried to sell, trade or return the $32k wc? If not, why not?

    2. Concerning PCA's, have you put up flyers in your local hospitals? What are you paying them and for how long are they helping you each day? What are your expectations of them and they of you?

    3. Glad that you have an advocate but ultimately you probably realize that you're going to have to fight for yourself? You obviously can communicate via web or e-mail, have you tried these methods vs phone when speaking with docs, looking/organizing your supplies, transportation, etc?

    4. Transfers. What level of injury are you?

    5. Things being stolen and your ability to find/locate them. It sounds like you live in a two story set-up? If so, have you considered maybe living in a one floor / ranch style home?

    Sorry if my practical approach wasn't the emotional response you were looking for but like a typical male my 'problem solving' genes kick in when faced with challenges like yours.

    Good luck and try to solve your issues one at a time and before they get too big. It's usually alot easier that way.

  7. #17
    Well, the w/c is mechanicly fine, what and the seating system grat, but I live in a semirural area. Insteed of a midwheel drive chair, I should have been sold a rear wheel drive. I find the salesperson a nice guy, but he is not good at his job. He was a good wheelchair tech but when he moved up to sales, he does not know the job like he should yet. I think its the learning curve, and he is willing to learn. When i talk to the company, their attitude is "your tough luck!" and it was almost said like that. I will talk with Richard Chapman tomorrow about that and see what can be done.

    I do now recruit my PCA's from nursing schools, and hosptials, and they are the ones that work out well....learned the hard way. But ironicly the one that has been really good and in my corner has had NO training except what I have taught her,but she has that valued common sense..Essy...she is a treasure. She can also read people VERY well.

    I not only have damage to the cordia equina(sacral and lumbar area), but have RSDS for years and am in the late stages, had a brain injury since birth (a stroke) causing me to have mild CP (right sided ataxic CP), am legally blind, and have some other issues. So the combination has made it quite hard, but I guess I am a bit like a Timex, I take a beating and keep on ticking. Interstingly enough, the RSD and brain injury I guess now make me prone to AD....that is how I almost died that May a year and a half ago. We did not realize I was prone to it and I was in EXTREME pain and my blood pressure was sooooo high (?/217) they though I had had a stroke or anurism...very scarey. Boy did they check me out from stem to stern! At that time the damage to my spinal nerves and the cordia equina occured. Having that kind of pain plus the pain of the RSDS is almost umbearable at time, but you have to keep going. The biggest problem I have now is that my rotator cuffs are so badly damaged, and because I have RSDS that they cannot operate on them without causing me more problems, so they do not open that can of worms. I tell you, I look at my old transfer board and think I am going to be able to use it again...someday....I will love the day when I can retire the Hoyer.

    I think they were scared older teens, not yet "hardened" into that negative lifestyle. I know she comes from a good family, and may be the "black sheep". He rsister, I am told, is a very secent and kind person. The younger one (her cousin), I do not think was involved. She seemed sweet, but was just plain to young for the job. The older one, wheo was 17 1/2 was a cocky nasty little klepto that needed her butt spanked a few times. I think they got scared and realized I was not screwing around. I now take the hard arse approach with my PCA's. I have started from the very beginning expressing my expectations nicely but firmly, and let them know no funny busness will be tolerated.

    By the way, beleive it or not, the foley tugging thing was done by a registered nurse, who is no longer able to see well enough to put in a catheter. She cannot see my meatus at all unless I stick a lamp down there so she can see it. I was hoping the nurse would retire, but I have to somehow request a new nurse.

    Chris, your common sense practical approach is good, it is making me think things out carefully and take a logical, solve the problem approach. There is nothing wrong with it at all. I appreaciate everyone's support and style of approaching the problem, it gives perspective......thanks....

  8. #18
    Hello tweetybird, I'm sorry to hear how badly things have been going
    for you but if I learned anything from my sci it's that every man (women)
    is for himself, period. It's hard not to get bitter and angry but those are
    the emotions that will ruin you. Don't get me wrong, there is no excuse
    what-so-ever for being treated like that but spending to much time upset
    will cause one to lose sight of what is important. I'm sure you're tired of
    being told to "hang in there" but... hang in there. later.


    "it's never so bad that it couldn't be worse"

  9. #19
    I am so lucky to have the support system I do have. The social worker I have is GREAT! She was supposed to get me $500.00 to pay for some back oil bills, but she came up with $800.00, so I can pay up on the electric as well. I am soooo pkeased. Then there is someone is buying a very old Jeep I was at one time going to restore, but I need the money more. So I am pleased that I will have extra money to pay off a couple other bills. Then I will have the rest to buy some things I need.

    Then I am having my roof fixed finally. It turns out I need replacement of part of the sill. Also I have a broken rafter, which is going to be fixed, and a brand new cellar bulkhead, made of pressure treated wood. I am so pleased. They are some people from my church and the Knights of Columbus. I am so pleased. Then my PCA's husband said he would be willing to volunteer his help if he needed it, and the sales rep for my w/c said he would be glad to come and help too and donate some of the supplies. The Knights of Columbus are donating some supplies as well too. The jack is in place and they are slowing jacking the house up so that they will not break anything. So, he is comming by every couple of days and giving the jack a couple of turns, like an orthodontist lightening the wires on a kids braces every few weeks, but in this case it is days. So he is doing a propper job and is doing it for free.

    Richard Chapman, an advocate, is being of such wonderful assistance it isn't even funny. He is getting things set up for me to get everything transferred to the new doctor and is getting my medical transportation streightened out for me. The office manager at the new doctor's office is being wonderful. She is taking extra effort to get paperwork in before we have all my medical records transferred over, and I give her alot of credit, as she is pulling strings and being a big help. I just hope the new doctor is as kind. If Linda is any indication of what they are about, she will work out to be a good doctor.

    Then this evening, my PCA came in with a bag in her hand, and she had all kinds of cute orniments. She had a cute wooden train for under the tree, along with a little cranberry car, full of "cranberries". She also had a lobster trap to hang from the tree, with a little lobster in it! Its cute. She had a wooden donky on wheels and a wooden NOEL orniment for the tree. I have this place set up so it looks like it had a major elf attack. Major Chistmased home. Now I need to put up the outside lights. I have my snowman, snowman snow measuring stick, and candy canes up. I have iceicle lights and lights for the trees and barns to put up.

    So, you are right, I have to remember there are people who are good and genuinely care about us. Life goes on. I am remeving negative mean people from my life, and if it is by the force of the police, so be it. I am willing to uplift the sad and troubled, as they have done it for me.

    The foley yanker, an RN I might add, has been reported (not by me, but by a friend of mine who is a nurse), so I do not think she will be playing tugg of war with my catheter. I think she will be on her best behavior. If not, there is going to be a major kick in the butt to her. But things are looking up.

    I do want to thank all of you for your support and information. And the encourangement to fight back against the "abusers", or creeps. I am feeling alot better.

  10. #20
    Senior Member WM's Avatar
    Join Date
    Sep 2004
    Everywhere the circus goes

    Thumbs up

    YES!! I am SO happy for you Tweety! Just really makes my day to see someone so nice get the niceness they deserve returned to them! Thanks for the update! YOU have made MY day!
    "I just want you to know, it was the best time ever." J.F.F.

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