Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-17-2011, 10:00 AM #11
AintSoBad AintSoBad is offline
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Dam.
Me too!
So sorry!

Pete

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Old 10-17-2011, 12:59 PM #12
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By all means look into getting a handicap parking card, even if it's only for now. and you can say to that "lady" and the "security" that you are handicapped.

my mom had one for a few years but then her vision improved a bit so she didn't renew it- but dad has a bad back & PD so at some point they will get one again.

most people are helpful , but always some lemons in the bunch.

Do you have a med for break thru pain?
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Jennifer Q (10-19-2011)
Old 10-19-2011, 11:10 AM #13
Jennifer Q Jennifer Q is offline
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Quote:
Originally Posted by LIT LOVE View Post
I've known 2 people that continued to use Handicap Parking even though they no longer needed to. The first, parked there when I met her to go for a long walk. The second, parked there because the parking lot was full, and then proceeded to jog for over a mile. Some people do take advantage of these type of situations.

I've found that by going up beforehand and asking nicely for special accomodations, most people will, without an issue. I would suggest that everyone else in your party take the regular route (with one to help you if you need it.) Having a note from your doc on you might help until you learn to exert your rights.

You're probably not going to like this idea, but it sounds like you need a wheelchair, at least for special occassions. Not because it'll get you special access, but because your description of walking in that environment sounds miserable.

Don't let one nasty old biddy depress you.

One last thing:next time ask the Security Guard for his name and his Supervisor's name. Let him know you need it in case his refusal to accomodate you results in a fall or other injury, for liability purposes.
Thanks LitLove,
I went in on Monday to see my Doc and to find out what the heck was going on with my leg. He suggested a cane and possibly a wheelchair. I didn't ask him for the permit thingy because frankly I don't think I need it. I mean yes I'm having difficulty walking but I'm not lik "those guys" who abuse it. I know there are people out there worse off than me and they are the ones who should be benefiting from it. It just makes my blood boil when I see people who walk perfectly fine park in the handicap spots and I just don't wanna be someone like that. Oh yeah great tip there about taking down names and stuff. I didn't think about that but now I'll start doing that if I encounter another situation like that, which I probably will lol. Thanks again!
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Old 10-19-2011, 11:17 AM #14
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Jenn,
Just as Lit Love, I too get infuriated at those people who abuse the handicap parking spaces. To the point, after watching the driver and passenger/s get out and all walking fine, that I want to approach them and ask just which one of you is handicapped? But my wife restrains me (lol) to avoid causing a scene. Which would probably happen because stupid people usually defend their actions with stupid reasons.
I had this discussion, calmly (lol), with someone once and his opinion was that since he paid for the handicap placard he should be able to use it whether he needed to or not at the time. Some people just don't get it!
I'm so sorry that you're going through this. I, along with everyone here, can relate to your trials. People can see my wheelchair or my cane and can witness my inability to walk right, but they can't see the constant pain I'm in. Most people respond in a helpful manner and are very accommodating but every now and again you run into those that just don't get it. Or even seem to care. Grrr!
Remember that cliche about not really knowing someone until you've walk in their shoes? In living with this monster the saying fits.
Here you find people walking in the same shoes that you do. For what it's worth this is the place to vent. Someone will always lend an understanding ear and even at times offer some witty piece of info.
Sorry for the long winded dribble. I tend to get carried away sometimes (lol)...
Hi Jimbo
Thanks for all you said. And don't be sorry, get carried away! I appreciate it! I feel like this is the ONLY place I can come to and be real! I really do feel like you all understand what I'm going through and it makes me feel relief! I'm beginning to understand this "illness" and being here has made it much easier! Thank you all for being here for me I don't know what I would do if I didn't have you all!
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Old 10-19-2011, 11:32 AM #15
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Quote:
Originally Posted by Jo*mar View Post
By all means look into getting a handicap parking card, even if it's only for now. and you can say to that "lady" and the "security" that you are handicapped.

my mom had one for a few years but then her vision improved a bit so she didn't renew it- but dad has a bad back & PD so at some point they will get one again.

most people are helpful , but always some lemons in the bunch.

Do you have a med for break thru pain?
Hi Jo*mar,
You know, I was debatin whether or not to talk to my Dr.about it but I decided that I didn't think I needed it. I mean I do have difficulty walking right now but I can do it slowly. I just don't want to get it and there's another person way worse than me who needs it. I don't know maybe I'm still in denial or something but I just keep telling myself that I'm okay.lol my dr suggested a cane and possibly a wheelchair but that sounded kinda funny to me. I told him that if he did give me either of them they would have to be blinged out cuz I wasn't gonna roll around in the standard stock model lol! I'm thinking the cane is my best bet-I do need something to put my weight on and my husband isn't always there with me.
Btw what do you mean by meds for breakthru pain? I went on Monday to see what/why my leg was being that way an he put me on Gabapentin which I think is neurontin and oxycontin for pain. That thing kicked my butt and I don't like it!
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Old 10-19-2011, 12:04 PM #16
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D E N I A L. Spelled out in caps, cheerleader style for you.

Just because you are approved for the special parking doesn't mean you have to use it when you feel well enough not to, but the situation you described, yes, you needed it. There might be times you feel well enough going in, and only need it on the way out, but that doesn't help. Err on the side of your health. What I described before in no way relates to you. I let both individuals know how shocked I was in their behavior and I removed myself from their lives. You need the help. Maybe it's a temp situation. Maybe not. The sooner you're proactive about your health (and this includes not causing flares due to vanity) the more likely you are to go into remission.

Oxy is an opiate. It'll likely be easier to handle after a short period of use. There are other types that seem less intoxicating to some. Breakthrough meds are Immediate Release--they hit you fast, and are effective for flares. Extended Release or Time Release are used to lower your baseline pain level. Many RSD patients use both.
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Old 10-19-2011, 03:09 PM #17
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Default Re: placard thoughts

Hi all, just a few thoughts about the placard. I finally decided to get one. I have severe ankle problems and am on morphine to be able to walk. I don't use a cane, but I do have trouble. On the days where my ankles arn't so bad, I don't use the space, but if I am going to a venue, where parking is really far away, then I go ahead and use it. I try to let others worse off than I am have the access to the spaces. I hate to use it at all, but sometimes there really is a need. If everybody would just be a bit considerate, I think there would not be any problem. Those super walmarts arn't much fun just getting from one end of the store to the other! Have a good day all. ginnie
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Old 10-19-2011, 03:33 PM #18
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Jenn,
You're not alone, Oxycotin kicked my butt too. I was in double pain having RSD in one wrist and just had surgery in the other one from breaking it so I was given a double dose (lol).
The wrist that I broke is now giving me trouble. I sure hope it doesn't get worse it's the only one I got left!
Because my balance is getting worse and my RSD spreading to my left leg I'm using a wheelchair to get around the house. Somewhere down the road I 'm getting a motorized wheelchair so I can do more when outside.
As far as parking goes, my wife does the driving, if there's a spot just as close as a handicap one I'll have my wife park in the regular one leaving the handicap one for someone who really needs it. I look at it as being considerate. Or maybe denial (lol).
One rule to remember is to never loose your sense of humor...

P.S.: Ginnie, get yourself a cane!
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Old 10-19-2011, 08:01 PM #19
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Hi Jenn,
I am very sorry you had to meet up with an ignorant person such as that lady was to you as well as those security guards. I do have to say "Go Mom" to your mom...gosh I love that woman!!! I'm glad she told them all a few things. Sweet!

I think what Litlove said is true about time to get a wheelchair. People will look at a wheelchair as you are soooo dependent on it but we as RSDers look at it as being more independent. This way people will leave you alone. You will get stared at alot too and people will still say rude things to you esp when you look young. I try to educate people about rsd and try not to get offended by the looks and questions they make. Later I laugh about them because they are so rude. You can use the wheelchair to keep some of your strength. I would add anything to it that helps you last through the game. I use a pillow to sit on and a blanket to wrap around my legs. I was thinking you can get some school stickers or make up some and have your kids put them on your "ride." This way the kids won't feel strange about having their mom in a wheelchair and it will lighten things by having the school colors or stickers on your wheelchair. Also, the kids will probably fight over the chair as my son and his friends have done in the past. They got real good using it around the house and can do wheelies on it too lol. Kids are usually fine about canes and wheelchairs it's the adults that have a hard time with them.

Also, I would send a certified letter to the school admin letting them know how rudely you were treated and how that lady was so nasty to you and your family. I would have stayed there and said "Yes, we are in the right spot." And if she gave you any crap I would have told her to mind her own business and stop being rude. She sounds like you needed to open up a mom can of whup a@@ on her haha. But it seems like you mom had that part all handled ;.). Hang in there and try to make all outings as easy for YOU and not other people. Best of luck.
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Old 10-20-2011, 08:25 AM #20
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Jenn,
As gentle and patient as I am (lol) at times even I can be pushed too far. If I were in that sort of situation I would have said to those security guys "I'll leave if your supervisor tells me to my face to leave"....
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