Health Organization for Pudendal Education

Hi everyone;
I'm still trying to get on disability. I've been turned down 3 times and I have one more shot at it in front of a judge which might be up to 18 months from now. I don't get it. I've talked to so many people that know people that received disability because of Fibromyalgia. I realize that must be painful but crap this burning poker in my vaginal area hurts. Does anybody, especially Vermonters, have any ideas to help me? I've gotten RFC reports from 2 Drs., letters from friends and family that knew me before and contacted a senators office. I've written a summary for a judge to read along with tons of testing reports. I just don't know what else I can do. If this time fails, I'll start the process all over again with another lawyer. I'm told I don't look sick. I've live everyday with so much pain that I can usually talk to someone in a #7 pain level and they don't even know. Patty told me to show up in court without the pain meds and do not do the makeup thing. I guess, get out of bed and go. No combing the hair, brushing the teeth and so on. Also, my insurance, United Health Care, has turned me down for the Botox shot. I'm not sure after reading threads here if that's a good thing or not, but the point is, all I do is fight with someone. This disease is turning me into a bitch with these companies. I hate that. I'm usually a very nice person. (Although my husband says I was practicing the bitch thing before ) Very funny Rod!
Any ideas will be greatly appreciated.
Doreen

Honey, you are in my thoughts and I wish I had answers for you.
I tried to get disability last year and was turned down because a doc. gave me anti anxiety pills to deal with the pain and the company wouldn't sell ins. to someone with a (mental disease).
My work only has permanent disability and so I can't get it through them either. At lease I hope I'm not permanently disabled. I decided I'm going to beat this and get back to work by next year. I will receive no paychecks starting in October so I am living off of savings.
I feel you may be breaking new ground with this and I'm sure many people here are anxious to hear what you are doing since they / we may be following in your footsteps.
You always walked to the beat of a different drummer and now you are leading the pack in legal fights. You are paving the road for the rest of us and I would like to thank you.
If I come up with any ideas I will let you know.

Good Luck

Hi Doreen,

I'm in Australia and I was refused disability on 2 occassions. I never gave up trying and on the 3rd application it was granted. I had to have one pain specialist and one regular doctor state on the forms that I am likely to be like this for more than 2 years.
I received the payments as my husband didn't work very much for about 3 years due to my inability to take kids to school, run the household etc. as well as him having to drive me to the hospital. In Australia it is mandatory for anyone taking meds. on a regular basis to report to the traffic licence dept. and a form has to be signed by the doctor regarding your fitnesss to drive. If you tell your doctor you cannot drive due to pain and medications it may help your case.

Don't give up, that's what they're hoping you'll do. These depts. don't recognise our condition as being a 'disability' but keep at them. health Insurance funds in Australia don't cover the cost of Botox either as it's considered to be in the 'Research Stage' for use on the pelvic floor.

I don't get disability payments any more since my husband is back at work full time and I now work 3 mornings per week. Don't give up.

Catherine

Everyone;
Thanks to all for the help. Kat, I keep meaning to call, but the new med I was put on, I swear almost killed me. Tegretol. Whole other thread which I will get to.
Catherine, I did have documentation that I needed drivers for the trips to New Hampshinre, 4 hrs. from me and to PT and Dr. offices. But thanks. If you think of anything else. I'm sure I've missed something. I'm off to the medical section to write about my experience with Tegretol.
Love to all;
Doreen

I am sorry if I missed something here, but these things helped me get approved:

Went to a shrink to get diagnosed with depression due to chronic pain (duh!)

Had ALL the doctors I had ever seen to rule out the zillion conditions, all the tests, all the meds, all the ER visits documented.

List effects of the meds as well - i.e. inability to focus and concentrate, fogginess and confusion, etc.

The effect of the condition - cannot sit, therefore cannot drive, require assistance for travel, bathing, housework, food prep, cannot lift, cannot bend - all the things we are not supposed to do.

I hope something here helps,
Grace

Grace;
Thanks. Other than the shrink, I've done it all. No one has told me to go to a shrink. I must say, I don't really feel depressed, just frustrated. Maybe I should suggest a shrink, but will the Drs. start being more careful than they already are on giving me the pain pills? I don't want them to think I'm going to commit suicide. I'm more pissed off than anything especially after the last shot with Dr. Q that I think backfired. I'm not saying he's at fault, I don't know what happened. I had 5 that worked and this one made me much worse than when I went. The pain stays at a 8-9 most of the time and nothing will bring it down. Sorry, didn't mean to get on to the poor me thing. I'm just concerned if I tell any medical people that I'm depressed, I won't get pain help. I don't even know how to pretend I'm depressed. Come to think of it, I don't know if I've updated the medicines and how they affect me. New project for tomorrow. Good idea, Grace. If I have to see the judge in person maybe my lawyer can submit that info. I just find this totally unbelievable. If you think of anything else, please pass it along.
Thank-you;
Doreen

I think it's really sad how we have to fight, scratch and claw our way to getting help. It's just not right. It's hard enough just trying to get through the day with this condition!
OMG - you have to go before a judge to get on disability? Like, a LEGAL judge?!?!? I find this totally unbelievable, too! I'm so sorry for all this extra stress you have to endure.
Warm regards,
Karyn

Karyn;
Thanks for the support. Yes a legal judge. That's what the paper work and lawyer said. I believe Patty told me that she did that also. What they do, is have a judge from somewhere skipe while you sit there. My lawyer said they usually want to see you. I'm in trouble already. I don't look sick. I hate to say this, but I just might get a wheel chair and have my husband bring me in.( No , not really) That's a terrrible way to do something, but the thought does get into my head. What I don't get, is SSI is Federal, so why is it different for all of us in the different states? The same rules should apply. If one PNR got on, then why not all of us? If I end up with another lawyer, I think I'll have to do more homework and approach this differently. I've already asked the one I have now and she said "That's the way it is"
Thanks for the help;
Doreen

Doreen,
I wish I could help MORE! I'm absolutely horrified for you!

Quilter 2 wrote:What they do, is have a judge from somewhere skipe while you sit there.

Could you please explain what "skipe" means?
Maybe it wouldn't be prudent for you to show up in a wheel chair, but ya know what? I'd be STANDING and leaning all over everything within leaning distance to you! No sitting!!! As is typical with PN, you have to be really creative in order to get around anything! Whether it be a task, getting proper medical treatment and apparently disability, too. "That's the way it is" is an unacceptable answer. Do you feel as though this legal expert has your best interest in mind?
Hugs,
Karyn

Skype is a service you can have on your computer so you can have essentially a phone call while you can see each other on your computer screens. It's a way to visit over the internet.