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!

Dear Jennifer Q,

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

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

Thank you Gabbycakes for your kind words. I sometimes think if my children and my husband really understand how miserable life is fo me. I tell them all the time that I'm not trying to neglect them or be apart of what they're doing, its just sometimes (ok majority of the times) I'm not 100% up to doing things. It makes me feel like a really horrible mother and wife when all I can do is lay in bed. It sucks even more when I have to ask them to help me with stuff or get stuff for me because I can't muster up enough strength to do it. Its so depressing! I'm young I shouldn't be feeling like this and heck I've been taking care of my mom who has Lupus. And she seems better off than me! Lol ok so maybe she's in remission but still....you get my point right! I'm new to all of this and I'm not really handling it well but I'm not sure how to handle it. I'm glad I have you all to vent to and to understand my situation. I know we all have differences in this battle but there is a common demoninator and for that I'm grateful. My family tries their best to be sympathetic and understanding, my mom more than others cuz she knows pain but still they don't get the full scope and I think I have to bemore understanding of that as well.

If I could hug you thru this computer I would! Thanks again!

Jenn

Hiya Sandy,
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

Thank you Ginnie!

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

What about your GP? Can he help? Maybe you could google the rules for Hawaii and see what you need to do, since the red tape involved might be quite extensive.

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)...