Sunday, September 4, 2011
I should be going to sleep cuz it is 3 in the morning. My circadian rhythms are so messed up and i am not helping them find peace and balance. I just wanted to write that I am happy that I have been talking more about my suicide attempt. I shared it on the facebook support group and i have told some new and dear friends about it too. I don't want it to be a secret. I want people to know that pudendal neuralgia can very easily lead to suicide. In fact one has to be very strong to not give in to the obsessive desire to die. Every day I remember that we are getting more help, that we are working towards getting doctors and surgeons involved in helping us. Every day, many times a day I remind myself that there are new interventions and new medications.
For those of you that are reading this and are struggling; the most important thing is to find a good doctor who understands the severity of this condition and wants to treat it. The pain has to be kept under control otherwise suicide becomes a very convincing route. I don't recommend it at all. We need every single one of you to voice this pain out loud and embodied. We need to create movement in the direction of healing.
And i have to go to bed. My sleep and my appetite are so messed up. And i am not helping at all. So, how can I help others if I am not helping myself?
Goodnight
And remember
suicide just is not the way
our way is hard
but we will have our victories
stay strong sisters
i am here for you
always praying
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I think about suicide every day. And then I think about my adult children and what a terrible legacy I would leave them.
ReplyDeleteDid you have surgery?
Yes, I know what you mean, of course. Thank you for writing and for joining me here. I did not have surgery and I don't see myself going that route. I am always learning to live with the pain and though life is hard I can see and feel its beauty. And that can be nothing less than a blessing. Your children are lucky that you take them into consideration. Please, hold them dear and close to your heart, always. Sometimes we suffer so as not to pass on our pain. It is brave and courageous to do this. You are a devoted and compassionate parent.
ReplyDeleteAs I read your posts I wonder why you would not contemplate the surgery. I, personally, am about to do just about anything to stop the misery. I am even contemplating ketamine infusion. B&O does nothing for me. Didn't sleep for two weeks with Cymbalta. Lyrica causes zombie-like symptoms and increased depression. Misery.I have "followed" your blog. I am luvstilbaai.
ReplyDeletei did the ketamine treatments and they are WORTHLESS...i felt better for 1 day (after 1 week of infusions in the ICU). i also did the surgery with dr. hibner in phoenix, AZ, it helped about 20-30% of my pain which was helpful considering my pain was at a 100% level. After several accidental overdoses of my pain medication (because after a while ur body build up a tolerance to opiates & u you need more & more), every kind of lyrica & cymbalta drug (WORTHLESS) and many nerve blocks (WORTHLESS also)...i have settled on a regemine of very small doses of suboxone everyday to block the pain (the use it in erope for pain & in america for opiate withdrawl but i found a few dr's happy to try it "off-label" for my pain....and it WORKS better then anything else for the pain control without the awful side effects. Now im not saying im pain-free, im in a constant state of pain at about a level 6 but that is much better then the 9-10 i was at...no one can function like that. i know what u mean about suicide, i had thoughts about it everyday. the worst part of this pain is that you look fine so everyone assumes you are fine but your FAR from fine. anyway, keep your head up and know there are many others out there just like you who wish you well as we are all in this fight together.
ReplyDeleteI know what you mean.
ReplyDeleteI enjoyed life before this and I did lots of things.
Not anymore.
I had to quit my job several years ago because I couldn't sit at the computer for long and I definitely couldn't drive very far.
None of those medications listed above work and I agree they are worthless. These days, I can't go anywhere because I do not know if and when all of the sudden the pain will zing up to 10+
I feel trapped. All the doctors do is offer more pills.
One doctor said it was all in my head. Sure. Do you think I wanted to give up working at my good paying job? Do you think I wanted to give up traveling? Do you think I made all of this up just so I could make doctors appointments for no good reason.
One doctor said, "just don't focus on it."
Really. Guess that doctor has never had nerve pain. There is no way to ignore it. It's like a fire that stabs like a knife.
Trapped.
Hope I've finally found a group that can if not help at least empathize. I'm not suicidal yet but did finally Google pudendal pain/suicidal to see how others cope with pain I could not have conceived of 9 months ago. If this group is still active I'll tell me story. Thanks
ReplyDeleteOr if there aren't any men in this group perhaps I should look elsewhere?
ReplyDeleteOr if there aren't any men in this group perhaps I should look elsewhere?
ReplyDeleteHope I've finally found a group that can if not help at least empathize. I'm not suicidal yet but did finally Google pudendal pain/suicidal to see how others cope with pain I could not have conceived of 9 months ago. If this group is still active I'll tell me story. Thanks
ReplyDeleteHi Rolf88, please join the facebook groups Pudendal Neuralgia Hope and Pudendal Neuralgia Support. Please feel free to facebook friend me and to message me as well. You will find a lot of support through facebook. There are plenty of men in the groups and everyone will empathize with you.
DeleteContact Dr Hibner in phoenix. He did my pudendAl decompression surgery
ReplyDeleteContact Dr Hibner in phoenix. He did my pudendAl decompression surgery
ReplyDeleteHe did my surgery as well. Still have problems sitting and deep, extremely painful spasms that I know I couldn't live with if the medicine I've been on for twelve years didn't work. The surgery worked with the nerve pain a lot, although it's not entirely gone. I do still live with pain all the time....it gets tiring and lonely. I would love how you're doing now. I hope you are ok. There is light on this path...I promise
ReplyDeleteThanks for your post Atara
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