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Having an emotional breakdown right now :(
I'm finally laying in bed but all I can do is cry my eyeballs out. I'm hurting really bad and I can't get stinkin comfortable. Tonight was my oldest son's first marching band performance of the season and I was so excited to go. Pain and all I wasn't about to miss it. So we packed ourselves into the car and drove the 20minutes to see him. First of all the school that they were perfoming at I have been to many times and I remembered that there were a lot of stairs, I mean A LOT of stairs and lately my left leg's been acting up so I decided that we should park closer to the backend where there weren't too many inclines and stairs. We finally get there and I gotta applaud my momma and my baby because they waited so patiently for me and my husband who was haping me walk ever so slowly. We are on bleachers facing their football field when I notice some seats with backrests and figured that was the place to go since those stairs looked hella scarry. Anyway, I start to put our stuff down, (I packed a cushion for my lil butt to sit on and a warm soft blanket to keep those crazy hawaiian winds away from my fragile skin) when this older japanese lady comes over to me and starts matter-of-factly tells me that those seats I was about to get comfy in were only for VIP and Handicap people. Then she turns to a security guard to tell her to kick me out. I was thinking to myself dang you lady I AM A VIP HANDICAP, IT TOOK ME 45 MINS JUST TO GET HERE AND NOW I'M STINKIN WINDED! but I didn't say it out loud, and so she comes back to stand there and watch me leave. So not wanting to cause a scene I got my family up and politely asked where would I sit if I couldn't walk very well and the stairs would hurt me more. This stupid lady looks at me and says in a condesending sarcastic voice "I don't know, you're young you should be able to go down the stairs" turns around and walks away. I was like OMG! Who the bleep bleep are you to regulate anyway lady (yeah this is all done in my head, as my momma raised me to respect my elders) I was sooooo furiuos! I shoula just stayed there but I decided to go somewhere closer to the exit..... so we headed somewhere else. But as I got closer to where that dumb lady sat I stopped in front of her, she had been watching me hobble slowly the whole time and I said uh ma'aam you didn't need to be rude to me, I may be young but I'm in pain and you certainly have no idea what I'm going through, just because you're old doesn't give you the right to be an @$$ to other people! And I continued walking away. I turned around midway and saw my momma giving the lady a peice of her mind and inside I was like go momma! I don't know what my mom was saying but I could tell from the ladys face that it wasn't very nice. Lol! We found some seats next to a nice couple a few ways away and watched the show. After my sons school performed I decided I had enough of sitting in a awkward position because the pain was getting too intense to handle so we left. We tried to go down the same way we came up but were met with two grouchy security guards who basically said that they couldn't let me go down that way because if they let me they would have to let everyone else. My momma who is small in stature got all up in this dudes face and was like uh hello my daughter is in excruciating pain and she can't walk up those stairs....you want her to hurt herself more and go a longer route cuz you wanna be mean? The guy was mouthing off to my mom telling her that there's an elevator and that he didn't care if I was in pain but he still wasn't gonna let us through. I didn't feel like fighting so I told my momma to leave it alone and that I could do it. It was a longer way and it probably took me a heck of a lot longer getting back to the car because we were now going downhill and my balance was shakey but I made it and by the time we got back to the car I felt like I was gonna pass out! We made it all the way home and I'm finally laying down but I'm sooooooo emotional! I'm upset that I can't do the things I used to do so easily and now I have to depend on my husband just to help me walk! I'm so mad at how people can be so heartless and ignorant. This rsd crap has moved into my left leg from my left arm and I don't feel like a person anymore! I'm so tired and in pain I can't stand it! My left leg is completely numb and ice-cold and I can't even get comfortable! My poor right side not only has to compensate for my crappy left arm, it now has to compensate for my crappy left leg! I'm so frustrated ight now!
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We can all relate to a story such as you just told. You brought back a memory for me. During the beginning of this nightmare I had my 2nd 5 day in-patient ketamine procedure and I was home about almost 2 weeks. At the time my son was 14 and very involved with ice hockey and played on 2 teams 1 being a travel team. We car pooled but this one evening his ride was not going to the rink an hour and 10 minutes by highway, my husband was working and couldn't get home in time so I decided to try and drive him. What a mistake, I didn't feel 100% percent yet a little paranoid so I decided to take the back roads. Well about 45 minutes into it, and I had my 10 yr. old daugher in the back, I looked at my son and said I can't do it, he never said anything but the look on his face was so upsetting to me I cried the whole way home. It was only 1 practice he survived but it's just the c...we have to go through to live a normal life, we truly do a have a "invisible disability". People just don't get it if you look normal you should be. My story is a little bit different then yours but the frustration of this disorder is so consuming at times. Hope you get some sleep and feel better today. The change of weather is always a hard time for me also. I give you credit I don't think I would of been so nice to that lady and your Mom was great. Pain free days ahead. gabbycakes |
Jenn,
Problems have to be fixed. we learn that quickly with our RSD. Seems like you need to get yourself handicap clearance ASAP. Talk to your doc about filing the paperwork with your State's Dept. Of Human Services to get that done. Or go online and look up what you need to do to obtain the necessary permits. Good luck!!!! And hang in there!! Xoxo. Sandy |
Re: compassion
I did read your post. I am so sorry you ran into a bunch of louts who showed such uglyness. It seems there is that going on in todays world. I can tell you that here on neruo talk you will find the compassion you need. We all do, who experience hard medical situations. RSD is not fun from what I know about it, and I am so sorry you had to endure the rudeness from some people who don't even know you. Let it pass, let your anger pass, and realize they don't know any better, and don't know how to be kind to a stranger. No strangers on neuro talk, and nothing but good advise and caring people. I care about you, though I do not know you. People have done the same for me when I reached out in tears, anger and frustration. I hope that it never happens to you again. Keep posting, and you will meet friends here to console, and help you through the ruff times, for indeed there are those terrible times. People can really act foolish, but they won't here. take care of yourself, and stay close to your family and friends. ginnie
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If I could hug you thru this computer I would! Thanks again! Jenn |
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This leg thing only surfaced AFTER I went in to see my vascular surgeon and I don't see him again until Nov.11th for a follow up from seeing my new neurologist. I thought about trying to see if I could get a permit but I think id have to wait to see the neuro dude first. Its so frustrating! Thank you for replying. Its making a world of difference to me knowing that I have support out there! I wish I could meet you all and give you all a big ol' hug! I'm truely grateful fo you all! Thank you! Jenn |
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Its amazing how I can be here and feel so much hope and support from people whom I've never met. I am so blessed to have been able to stumble upon this forum! Even though we don't know eachother like I said before, there is a common denominator that binds us together. And if I could I would hug you through this computer to let you know I'm. Grateful for you! I'm new to all this and having to come to terms with it is quite difficult for me. But I thank you so much for your encouragement and hope :) Jenn |
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Good luck. |
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. |
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)... |
Dam.
Me too! So sorry! Pete asb |
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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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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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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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! |
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. |
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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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! |
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. kathy d |
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".... |
We got a wheel chair just for shopping and school events because many times you have to park so far away. And I use a cane when I'm walking, not because I really need it, but it acts as a signal to those "huff and puffers" that think I'm moving at a snail's pace that I do have difficulties. People seem to go around without making comments when I use the cane. Just don't hang it over a chair in a restaurant and forget it. I also have a mobility scooter that I've used at Cross Country meets, tennis matches. I can go, and not be as restricted as sitting in the car is.
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It took me 12 hours to make a 3 hour drive a few years into having RSD, but before I had accepted the limitations it brought. It was for my bf's wedding shower. I'd drive 1/2 an hour. Stop. Take meds. Wait to be not too medicated. Rinse & Repeat.
My bf didn't believe that I had really taken that long or required such extreme methods. So when our nearest and dearest struggle with our illnesses, what can we really expect from strangers? People will surprise you with their compassion, and others will surprise you with their nastiness. Many will seemingly take your illness personally--which I don't understand at all. It's as if they think you've done something to bring it upon yourself. They don't want to believe it could happen to themselves I suppose. Everybody will have a cure after doing a 2 minute Internet search. And yeah, maybe trying some of those things are worthwhile, but there can be an expectation that it's easy to go into remission. If you fail to get better in their expected time frame... My vent for the month... ;) |
Support here is great
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I love this site as well. This is a family of people sharing and caring as if we reach out with open arms being understood by those who also fell victim to this monster. A place to chat, ask questions or just vent. People here don't seem to mind listening to the rambles of me (lol)...:wink:
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