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Got my handicapped tag paperwork filled out 8:)


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Hi Everyone,

My pain mangement doc was awesome. I asked him and without any further explanation from me he said "sure". :) Thank goodness for having him as my doc! One less thing to worry about for me. I appreciate all your good ideas and thougths--I really think your good karma helped me today.

Nina

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Hurray!! I hope it helps! I am still surprised that your cardio said no. I'm hoping to get one in the next several weeks, too.

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Guest Mary from OH

Nina,

It's about time. My dr made me get one too! I've found that there's times when I REALLY need it! Like grocery shopping!! That about kills me anyways, and if I have to walk a mile in the parking lot too and carry the bags!! I'm asking for trouble!! Plus, places where I'm walking a lot or the parking lots are big. Or when I have a HUGE migraine... I could go on!! I'm proud of you!! I don't know why we're so stubborn? But, I was really depressed too, because when I finally got the courage to ask, I asked my pain dr and she said NO!! She told me to ask my Neurologist and that he could do it!! Whatever!! Drs are weird!!

Kudos to you!!!

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Nina,

I'm happy for you that you found a doctor willing to help you get your handicapped sticker. But I'm also a little confused. I used to lurk on the board and from what I remember you worked full time, were in school and ran in a race several months ago. Have I missed something over the past few months? Has your dysautonomia gotten worse? Because I'm not getting why you would need a handicapped sticker when you seem so much more functional than most of the other members on here? I'm not trying to be rude, I just don't understand how you were able to run in a race and still need a handicapped sticker?

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First, I would not actually say that I completely "ran" the race--It was more like jog/walk. I also was in physical thereapy 3 days a week for more than an hour each visit for several months ahead of time, under the care of a PT and my doctor. The race was in Winter, so I knew I'd have a better shot at a cool day so that heat wouldn't be a factor. As it turned out, it was barely 20 degrees on race day. Even with all that preparation, I paid a hefty price in the way of a lung colapse as a result of the race--my doctors feel pretty strongly that all the running caused my organs to jostle around too much (a problem with EDS) and that's what prompted my left lung to stick to itself. My back and chest hurt the days following the event, and increased across days that followed with the full collapse a week or so afterward. My docs have since requested that I do not participate in any races, or anything else hard on my body, like sports, normal impact aerobics, bungie jumping (did that already B)), trampolines, etc.

As for functionality--that changes on daily basis. Warmer months have always been difficult for me, my first faint occuring in Kindergarten (age 4) in June--my school had no airconditioning. Also, I have not been the one doing shopping in our household for several years now because I'm very symptomatic at the beginning and end of the day, when I would normally have the time in my schedule to do the task. As for grad school, I have been working with the disabilities office for the past 2 years. The problem has been that i have to park as far as a mile away from my classes, and I arrive at class completely exhausted, heart racing and in full-out surges and sweating for at least the first half hour...and after that I just want to lie down. In the Summer, it's worse because there's no place to rest on the way from my car, at least not any place indoors and out of the heat.

I only plan on using my tag on the days when I'm struggling. Days when I'm doing well, it will stay in my glove box. BTW, no insult taken at the question. I asked myself the same things, but finally came to the conclusion that I needed to ask for the tag. There are times when I just can't avoid going to a store (like the pharmacy or grocery), or getting to grad school for an exam. My defining moment was about a month ago: I nearly passed out at the pharmacy inside Target, and then had to make my way all the way to the back of the parking lot, afraid that I would end up on the asphalt on my way there.

Nina

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skye-

nina explained plenty well herself, but i just wanted to chime in a bit as well. while it's no longer the case for me, when i first got my placard i could run a bit myself on my good days in temperate weather yet in extreme temperatures i could hardly get to work without losing consciousness, much less a store. i used to spend upwards of an hour waiting for a close spot & often simply left. and if something as "little" as a cold hit me - wherenin "normal" folk could go about a normal schedule for the most part, i'd pretty much be bedridden. even aside form illness my body fluxuated EXTREMELY...one day i might have trouble getting from my bed to the kitchen and a week later i might be able to go for a 3 mile run.

while the degree and range of people's "ranges" varies, most have fluctuations, ups & downs, etc. it's part & parcel with dysautonomia and - in my opinion - one of the toughest things to understand and live with.

B) melissa

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I should also probably add that I don't always post about my condition here on the forum; I do have a pretty good support system at home and via my email friends. Melissa and Michelle probably know more about my health than most, as they are the first ones I send notes to when I'm having a tough day and will not be able to be as thorough here on the forum.

I also don't know if I'm all that much more physically functional--I don't mean to sound condescending to others at all in this, but I've had my whole life to learn to cope and no "normalcy" to mourn. I've had this all my life, so this IS my normal. Unlike others, I haven't had to struggle with depression, and I've never experienced the anxiety problems that some here report. My body's wacky daily symptoms don't make me scared, upset or nervous, the just are there, and often, they just go away on their own. I don't usually even know that my heart is racing until I start to feel overheated or sweaty.

Not having those emotional things to take my mental and physical energies, I think I can use what I've got left over a bit more effectively daily. I always feel really sympathetic for those of you who were perfectly healthy and then developed problems. It must be so tough to grapple with the losses.

I'm not saying that attitude alone will make you functional--It wont--but I believe it does help me cope better with what little stuff I've got to work with. That being said, I have my days when I can't make it out of my bed, let alone my bedroom. It's normal for me, so I don't usually write about it on the forum. It's just part of my "normal" life and not something I feel the need to vent about. Things that tend to upset me are what I typically end up chatting about with regard to my personal needs--like doctor frustrations, family and friend dynamics, or, like the genesis of this post, being pooh-poohed by my cardiologist as if passing out in warm weather and being unable to shop for food, clothes and medications for myself wasn't important to my ability to function in the world.

Nina

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Guest Mary from OH

Nina,

Well said!! It took me quite a while for me to go to the BMV to get my app when my dr suggested it. And then when I asked the "wrong" dr to sign it, I was devastated. I'll have to agree with you. With the exception of a brief period, I think maybe between high school and college(?), I have never experienced the anxiety/panic attacks with the symptoms. However, thinking back, I think that the "anxiety attacks" that I was diagnosed with were really POTS flare ups since I was not diagnosed until many years after. I, too, have had POTS my whole life, but didn't have a name for it until much later. The way I've always looked at it is that I have good days, bad days, and "indifferent" days!!

Hope your placard helps you out!! I know what you mean about the LONG trek across campus!! Actually, one of my drs had written handicapped parking for me back in college SPECIFICALLY for that reason!! And this was before I was diagnosed, but just from my symptoms (and also I had my R knee totally recontructed and sometimes have a great deal of trouble with walking, too). I attended The OSU and it is a HUGE campus!

Best of luck to you and BTW, lean on us a bit too!! <_<

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