Health Organization for Pudendal Education

Doreen

I have moved this post into the insurance section where it is more relevant.
I do sympathise with you about how to prove matters for disability claims....it is not easy but do take all medical information with you and stick to your guns....it is hard but it will be worth it in the end.
Best of luck

I never told any of my other doctors that I went to a shrink so it was no issue with any of them. Also, I would not suggest wheelchair as one of the big "challenges" of PN is sitting - no sitting = no driving, no bus, no trains, etc. And, in my humble opinion, your lawyer stinks!! Use a cane or a walker for your hearing, no makeup, walk slowly, bend over a bit (I tend to do that with high pain levels without eve thinking about it). I have a couple of books that I used I will try to pull out tomorrow and see if there is any other info. Remember, you did not do this to yourself and you deserve it!

Doreen, I have no experience in disability claims but I'm wondering what would happen if you lie down in the court room. I have had to do that many times with this condition -- sometimes in restaurant booths, on airplanes, in airports, at church, in malls --- why not in the court room? Do you not have to lie down a lot at home? Well, then -- why not in the court room?

Grace and Violet;
Thank-you both so much. I wasn't really going to get in a wheelchair but sometimes in the middle of the night when I can't sleep my bain comes up with all sorts of strange ideas. I'm going to take my lawyers paperwork that we had to sign and copy it, Then I'm going to send it to CT to a paraleagal friend of mine and see if she can find any way to get out of the contract. Probably not, but it's something. In the meantime, I know right where I can get a cane and walker for that matter. If you find out the name of the books, please let me know. I will see if my local library can geet them for me.
Violet, lieing down is a great idea. I've had to lie down in airports, doctors office floors and er floors. No lie there.
You guys and others are so great that I'm actually weepy as I write this. Can't see to type so gotta go.
Doreen

Doreen,
Big, warm gentle hugs to you!!!!!
Love,
Karyn

Ladies;
Okay, I'm better now. I know better than to get on this site when the pain pills haven't kicked in yet. Also, I just got out of the shower and saw another pile of hair, My hairdresser says it's stress. My husband works Fri-Mon so that means I have to do stairs to keep the wood stove going. No more excuses, Doreen
Karyn;
Thank-you. You will be enjoying some of the fall colors soon. We used to go down thru Lowell when we went to visit family and friends in Avon and New Bedford.
Grace;
Do you feel your 2 surgeries with Dr. C were worth it? I know we're all different in our Pudendal problems, but I was just wondering, generally. Have you seen Dr. Hibner yet? I can't remember. I go in April. I've been hemming and hawing about spending the money, but now I've made up my mind, we're going. I told my husband we will try to make it into a vacation. Never been to Arizona. If I look at it in a fun way, I won't be so down about spending the money on another Drs. appt.
There are a number of lowlifes in our town that are on disability. They never worked and they steal. Nice thing about a small town, you know the people. Bad thing about a small town, they know all about you too. HA HA At any rate, I'm going to find out who their lawyers were. If they can get on, must be I'll have a chance. I really want to call my lawyer and say something, but I'm afraid my Italian temper will make an appearance. Especially since 2 wks. ago I gave her a manilla folder of RFC reports, personal letters and a summary of PNE for the judge. Mind you, she never told me about the RFC reports. My CT friend told me.
My sincere apologies about my "Pity Party".
Thank-you all a zillion times.
Doreen

Hi there,

That is a tough question about my surgeries with Dr. Conway. I knowingly went for the least invasive approach (my husband was really, REALLY, a proponent of that course of action) knowing that it may not work and, unfortunately, it did not. However, I have nothing but good things to say about Dr. Conway and the hospital and the nursing staff. Of course, in hindsight - wait, does that mean we have eyes in our butts? - I wish I had gone to Dr. Hibner first.

Okay, back to social security . . . here are the 2 books I used that were the most helpful: Disability Workbook for Social Security Applicants by Douglas Smith and How to Get SSI and Social Security Disability. I think I got them both from Amazon and I listed in the order of the best info. They are not too expensive and definitely worth the investment!!

Hugs,
Grace

Grace and all the others that have been helping;
I spent a good part of my day talking to lawyers and also the Disability Adjudication review office. After finding out my lawyer hasn't sent them anything since May I was ready to scream. So I did. I called the lawyer and told her that I'm not happy with the way she's running my case. I told her that the above office told me she could be trying all sorts of things. I also told her I did more work than a law clerk. In the end she told me she agreed After I picked myself up off the floor, I told her it was time that she got moving. There was a whole bunch of othe stuff I said but the end result is that she "said" she would ask for a hearing. I think she knows I will find out if she's done it or not. Today I said "Self, take some action" and I did. Will it help? Who knows. But at least I tried. Thank-you all for helping me realize I need to do something.
Grace,
Did you see Dr. H yet or are you going to? I agree about Dr. C. That whole office is great. I do not like Lynn Assad but I do like Dr. Q also. One out of three aint bad
I ask about Dr. H because I'm seeing him in April and now i'm kind of excited and nevous all at the same time. If you have seen him and don't mind telling me, how was your experience? I'm going to order those books right now.
My very best;
Doreen

I see Dr. Hibner on December 15th. I see his PT, Loretta, in the morning and Dr. H. in the afternoon. I promise to tell you everything

Good on you for the attorney and I hope those books help you as much as they have helped me!!

Hugs,
Grace

Doreen,

You will love Dr. Hibner. He is definitely caring and compassionate. He wants to make sure the people he takes into surgery have exhausted all possible conservative methods of treatment. I knew in my heart (call it a sixth sense or whatever) that'd I'd end up in surgery but if I didn't try the conservative measures first (ct blocks, pt, Botox) I may have gone through a huge surgery for nothing and here it could've been just pelvic floor tension myalgia, which in some cases completely mimics the symptoms of pn. Hang in there... Ive been to AZ twice and I live in the eastern time zone so I know the trip ain't easy. This is definitely not a cheap illness to have!!! However, I'm glad I chose Dr Hibner because i have complete confidence in his abilities as a surgeon, I like the modifications he has made to the TG approach, and he's straightforward, making no promises, yet compassionate for our pain. Last time I was there he gave me two big bear hugs like an older brother would or something. I think to be on the doctor side of pne, you can't NOT have compassion.. I mean look at what our daily lives consist of?!?! I will pray that disability gets approved for you... You certainly deserve it!! I don't qualify because I never paid much into the system. I was self employed and since I'm a musician, a lot only jobs were "gigs.". Keep us posted!!! Don't give up! Some of the ladies on this site have been just so sweet to me (KARYN--- mwah!) and we have to support each other. Praying the nightmare ends soon for all of us.

As Mommy