UNBELIEVABLE!!!

Discuss here about Medical Disability claims and Insurance possibilities for PN treatment options
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Amanda
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Re: UNBELIEVABLE!!!

Post by Amanda »

While it may seem easy to some people that its easy to obtain a parking card, the reality is different and there are different rules in various countries/regions.
For the European version its a case of having a gp complete a form with also an application from the applicant....the normal guideline is that you need to have one limb either missing or unable to work normally. The difficulty with sitting changed this for me in Ireland as it was never heard of before therefore I had my application passed.

We need to do a poll of how many of us have these permits.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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Celeste
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Re: UNBELIEVABLE!!!

Post by Celeste »

Amanda wrote:While it may seem easy to some people that its easy to obtain a parking card, the reality is different and there are different rules in various countries/regions.
So true. Today I learned that in Texas, you pretty much need to be reliant on some kind of "assistive device" for mobility, either permanently or temporarily, to get one. The stickers/placards are considered a valuable resource and doctors can get reprimanded for giving them out for lesser causes.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
Emily B
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Re: UNBELIEVABLE!!!

Post by Emily B »

I'm so sorry you had this experience. You're not alone. You think the note was bad? Get a load of what happened to me the FIRST TIME I used my handicapped placard...

I had my placard for months and hadn't used it. I was embarassed. Using it meant I had to accept that I was handicapped. My husband kept urging me to use it, but it remained hidden in the glove compartment. Finally, one day I was in horrible pain and decided to take the plunge and use it for the first time.

I parked in the handicapped spot and walked into a store to return a video. There was a cop standing at the counter, chatting with the person that worked there. Apparently, he saw me walk out to my car and I didn't look handicapped enough for him. I had just barely made it to the car and was closing the door when I heard the angry cop yelling across the parking lot....

"NO...NO...NO! YOU HAVE GOT TO BE KIDDING ME! THESE PARKING SPOTS ARE FOR HANDICAPPED PEOPLE!"

The cop stormed up to my car. I was shaking like a leaf. I took the placard and handed it to him. He looked at it and looked at me and rudely said, "Show me your paperwork." He obviously thought I was lying about the placard being mine.

So I nervously got my paperwork out of the glove compartment and handed it to him. The paper has my name and address on it. He looked at it and realized he had made a total a** out of himself. But he couldn't admit that, right? Instead, he says...

"You realize I have to check these things because people misuse these placards all the time. If I didn't check on you, then people get on me for it."

Stupidly wanting to reassure him, I asked, "Do you want to see my ID so you can make sure it's me?"

He says, "Nah. I see you live right around the corner from here, so it's okay." What the heck does living nearby have to do with anything? I still could have been anybody using the paperwork. I was so shaken up by that, I could barely drive home. I didn't use that darn placard for months and months after that. I still avoid using it.

AND, sometimes, when I see people giving me the evil eye, I fake a limp! I can't believe I do that. But there it is. I do. It's how I cope.

So, you are not alone. My sister has lupus, rheumatoid arthritis and sojourners. She got a nasty note left on her car almost exactly like yours. And she saw the person leave it there are drive away. The lady was driving her marked work vehicle. Guess where she worked? At an assisted living center! You'd think she, of all people, would know that pain and suffering isn't always visible! My sister wrote a nasty letter to her employer.

Pisses me off. Really pisses me off.

Emily B.
calluna
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Re: UNBELIEVABLE!!!

Post by calluna »

Amanda wrote: For the European version its a case of having a gp complete a form with also an application from the applicant....the normal guideline is that you need to have one limb either missing or unable to work normally.
Here in the UK it took one phone call to my local council office. I didn't even have to fill in a form.
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Karyn
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Re: UNBELIEVABLE!!!

Post by Karyn »

Oh, Emily - what a horrible experience! :evil: I'm furious you were treated so poorly!
Emily B wrote:I had my placard for months and hadn't used it. I was embarassed. Using it meant I had to accept that I was handicapped.
I soooo understand that. I've been putting off getting a cane for just that reason. My heart goes out to you for having to go through that.
I think you're very brave for not breaking down and crying on the spot!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
LottaNerve
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Re: UNBELIEVABLE!!!

Post by LottaNerve »

Emily, you have my total sympathy and support too! ((((((((((((hug for Emily))))))))))))))

I use a cane because my balance is shaky and I do limp even after walking a short distance. I also have a home health aide with me and as she wears scrubs ---- so that provides visual cues of being disabled so nobody has bothered me. I have no qualms about using my placard. However, if I choose not to use my cane because I want to strengthen my legs and not always depend on it, then I am more aware of the possibility of criticism.

It will always be this way -- unless we can develop a visible sign that clearly communicates "I am DISABLED even if I don't look sick" people will not be able to understand. I don't think they mean to be cruel. They think they are defending the helpless and hurting people - without realizing they are actually doing the opposite of what they are meaning to do -- they are attacking a helpless and hurting person instead of defending one!!!

SO- For those of you who do not have a cane, you might consider getting one as an aide when you are going to public places. I do not think of this as a ruse, but as a way of helping others "see" that you are disabled. When I have my cane with me, people are so courteous. They open doors for me, stand aside for me, wait for me to cross the street - whereas if I leave it in the car, they bump into me and knock me off balance, they let the door close in my face, they won't help me lift anything in the store, they nearly run me over because they can't wait for me to cross the street -- THEY JUST DON'T 'SEE' ME. So I am helping them "see" my disability when I use my cane. Without my cane, I can even be limping and grimacing in pain, but people do not see it.
It's just the way we humans are. We are so busy and involved with our own concerns we do not "see" other people's problems. They aren't clairvoyant or mind-readers and we can't expect them to be. SO GET A CANE AND HELP PEOPLE SEE THAT YOU ARE DISABLED.
There are even some cool canes out there. My sister got me one that folds up and then to "open" it you just give it a flick with your wrist and it snaps into a solid cane. Plus it's purple and sparkly so I like it!

Now, if you truly do not need it and can walk just fine, then I don't think you should qualify for a parking placard. Walking is good for us if we are doing well after the surgery. I would much rather be able to walk further and NOT use the darn placard, believe me!
--------
As far as my future as a handicapped gimp, I am hoping it won't always be this way, but my surgery unfortunately did not result in success. However, I do have an exciting new development and my hope is renewed! I am now talking to Dr. Dellon on a different approach -- and I will post that in another area of the site.
http://www.icandpne.wordpress.com
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
GraceUnderFire
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Re: UNBELIEVABLE!!!

Post by GraceUnderFire »

I agree with Lotta Nerve. I have a cane that I need to use sometimes depending on how things are. I only use my HC placard when I really need to. I did look into getting a shirt from the Invisible Disabilities website because I was tired of getting hollered at for using the spot when I didn't have a can - but why the heck should I have to buy a "uniform"? Just another challenge we have to deal with.
Woke screaming from ab hyst 6/08
Diagnosed w/PN, ilioinguinal & iliohypogastric neuralgias 1/09
3 PN blocks w/Dr Quesada
Rt side TIR, ilioinguinal neurectomy & vestibulectomy 5/09 Dr Conway
Left side TIR 2/10 Dr Conway
Potter MRI 9/10 and consultation w/Loretta & Dr Hibner 12/10
Bilateral ilioinguinal, iliohypogastric, genitofemoral release w/Dr. Hashemi Aug 2011 left & Sept rt
Bilateral TG surgery w/Dr. Conway will be in January 2012
Emily B
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Re: UNBELIEVABLE!!!

Post by Emily B »

GraceUnderFire's comment led me to look up the Invisible Disabilities Association.

Here's their webpage that talks about the subject of judging people who use disability placards.

http://www.invisibledisabilities.org/ed ... pearances/

Emily B.
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Amanda
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Re: UNBELIEVABLE!!!

Post by Amanda »

Thanks EmilyB for posting this link

I too use a crutch most of the time, and like you when I dont people bump into me and dont know whats wrong with me.....when i use it they move out of the way and avoid me and do open doors etc....why do we have to have an invisible disability?
When travelling in airports i always use my crutch as it does bring awareness to something being wrong with me......if i walk to the bathroom then people hav ethe assumption that there is nothing wrong with me...!!!!
We really do need to bring to the Worlds attention that disabled people are not only those who cannot walk because they dont have limbs etc....we are being discriminated and we need to take a stand to make the World look at other disabilities. i have been removed from theatres and cinemas etc because I have stood rather than sit in a disabled area....we need to get the word out that we cannot sit...!!!!
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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A's Mommy
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Re: UNBELIEVABLE!!!

Post by A's Mommy »

Thank you to EVERYONE for their tremendous support of me and (eachother!) on this thread!

You are right... we need to get the word out. We will. We need a major brainstorming thread. Anyone know how to get a live chat going that we all on the forum could attend together?

A's M
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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