Health Organization for Pudendal Education

This has been my GREATEST fear since this horrible pain began. Having suffered with fibromyalgia and working for years and years and years to manage it and keep a job, when the PN pain hit big time, I was terrified that this might be the one to take me down. But I've got folks depending on me for healthcare, tuition, and other goodies like food and shelter!

I've done everything within my power to make this work. I took several months off for therapy and have finally gotten to a place where part-time work is possible, but my requested accommodations were too much to ask for. So they offered me a mockery of an alternative. I had to say no.

I'm afraid I will have to take legal action. I don't eant to. This is such a heartbreak. And pretty stressful on the food and shelter front. I am so disappointed and ANGRY!!!

Waaaah!

Grace,
I am devestated for you. I am so sorry to hear this and had the same fears but was lucky to get treatment and surgery to avoid it. I hope you can get swift legal help for yourself and other dependants.
Janet

Thanks, Janet. For several months, work has been my only motivation to persist with the slow crawl of progress. I knew that every bit I got better would make a difference. Now I don't know how I will keep improving with no medication.

When I consider my quality of life without medication and the magnitude of our financial and family healthcare needs, I really feel like giving up.

Grace, I am so sorry to hear about this. When I was still working my job was great trying to do everything to keep me working but I just got so I couldn't. I've been on disability for almost 5 years and it sucks. Like you, I have another PNE friend who lives in my area whose job would not accomodate and she finally had to go out on disability. Get yourself a good disability attorney. Unfortunately, they aren't cheap. Go to social services and so what medical you and your family qualify for. You my qualify for Medicaid so some other state assisted program. You won't qualify for Medicare because you have to be on disability for 2 years. The medications you take, talk to your doctor that prescribes them and see if he can keep you going on samples. Also, most drug companies will give free medications if someone is in financial crisis. Give those companies a call and see if you can get some of them to provide you with free medication until you get this figured out. Unless someone has PN people have no idea the financial burden this disorder puts on families.

Hello Grace,

I have been through this. I was in pain. I tried to alternate standing and sitting and only damaged my spine. I tried to work from home from bed but it gave me abdominal spasms. Before that I worked for 10 years with fibromialgia.
But pain was so intense that one day I was on the phone with client and I realized that I could not think about anything but terrible pain. I went to short term disability and did everything doctors said hoping to recuperate and go back to work. Then it was LTD and they kicked me out. Then my company kicked me out. I think that they had right to do so because I am out of work for a long time and I could not be productive now with all my issues.
But every step was very painful. Even decision to work from home. I cried. I thought how I will live in complete isolation. But I was to lose even virtual contact with people and sense of purpose of my existence.
It is difficult. But do not give up. Some people recover and go on with their lives. Violet can tell you this. It really takes time and effort and determination.
The good news that I feel mentally better. Depression is gone. I am a fighter that fights for my own survival and my family well being. I do not have time to feel sorry for myself.
Try to take it this way.

Love,

Helen

Hi Grace,
Commiserations, it's '$!¬!T@!!' isn't it!
In a similar situation, although thankfully mine's not, sorry wasn't, the only income, just a 'comfortable' half, which can (and has) create such self imposed guilt.
I have battled British bureaucracy for so long and hate the fact that it is my life in their hands but I really have no alternative; well the alternative would be absolutely no life, just pain.
Obviously there is a different but almost similarly and seemingly insurmountable system? which I have come to the conclusion is down to the fact that the general medical community does NOT understand pelvic pain properly, especially pelvic nerve pain. I thought that ignorance was no excuse but apparently it is.
Keep the anger. . . . but make it work, tenaciously for you; not against your own health. Seriously, it can take such a toll. NYT and Janet are completely right, get legal help. Also get as much diagnostic, medical information about your own condition, mentally as well as physically, including the effects of medication as you possibly can.
Good luck,

Helen

Grace, I am really sorry to hear about your job loss. I guess I'm not really up on what the Americans with Disabilities Act says. I'm not sure what type of accommodations you are needing but if it's a lying down work station, there are ways to achieve this without spending too much money. I have set up a workstation in my home that allows me to lie down (not that I need to that much anymore) but it's so comfy I still use it anyway Good luck.

Violet