Friday, September 08, 2017

How would I...

This has been a long and difficult day for me.  And a sobering one.

This morning I had another terrible, terrible Pudendal Neuralgia flare.  For the first half hour, I was screaming and screaming and screaming and I was trying to think of a way to kill myself ... before the pain began to ease just a bit, bringing the hope that it would end.  I was in such a fog of pain, I cannot remember what ideas I came up with or whether or not I thought they would be effective.  Though, I suppose I wasn't sure since I did not make an attempt.  But that was not because I was not desperately wanting to die.  I was.  And I am fairly certain I would have made the attempt had I been.  And that sobers me.

I finally fell asleep about two hours later, when the pain had ebbed enough for my exhaustion to take over.  When I awoke for the last time, I was rather discouraged, thinking about the flare.  I want to say that I am disappointed in myself for my reaction, but I think it is understandable.  In the support group, suicide is common.  With both Pudendal Neuralgia and Trigeminal Neuralgia.  Such terrible, terrible, terrible pain.  I don't know how I'm supposed to bear it.

This was the third severe flare in as many months.  To think that this could become yet another new normal that I have to endure.  As I said, I just don't know how I'm supposed to bear such pain.  I am doing what I can.  There is very little that is successful with Pudendal Neuralgia.  There are options, such as surgery (pretty much everyone in the support group discourages that) and nerve blocks (usually written about as a waste of money).  I'm on the meds most recommended.  The ones that are considered "fringe" by medical folk are compounded suppositories, often with the same meds I am taking orally.  The thing is that you just cannot easily get to the pudendal nerve and, as with many things neurological, there are not a lot of options, not a lot of research, not a lot of doctors who are actually knowledgeable about it.  The problem for me is that all of the other options rather than medication involve vaginal access.  And there are no females in the area to do so.  Perhaps I could maybe work up to having a female doctor to address this, to spend the countless trials of options, but I simply could not do that sort of exploration with a male doctor.

Besides, from everything I have read, actual help is rare.  What is the norm is a progression of the issue.  That I am experiencing.  SIGH.

When I finally dragged myself out of bed, I took Amos outside and then checked the mail.  I was pleasantly surprised to see a package and then deeply grateful for its contents.  My Facebook friend in Japan, someone I've never met and will probably never meet, sent me a belated birthday present.  It was such a thoughtful one, two Japanese gifts and a handmade, quilted zippered pouch.  It was lovely to be remembered.  Her note inside bemoaned its tardiness, but it was perfect timing for me.  It was, to me, a reminder of the care of our Good Shepherd.

I was bold in that I bluntly posted on Facebook about the flare and about my desperate attempt to find a way to end my life so that I could end the pain.  I thought, maybe, my close friends might reach out.  But no one did.  No calls or texts or emails.  This evening, I am as alone with the pain and the desire to die as I was this morning.  And that makes enduring all the harder.

Six days until I can talk with the therapist.  Funny that.  I've set a goal of not talking medical this next week, to concentrate on the other, not that she minds the medical.

I am so accustomed to pain now.  The darned Restasis causes constant burning and stinging in my eyes.  I also have arthritis pain, pudendal neuralgia flares, trigeminal neuralgia flares, and neuropathic pain.  There is the migraine pain.  And then there is the chest pain that comes and goes and the constant pain from the pacemaker pocket.  The list goes on and on it seems.  Little things.  Big things.  Things that come and go.  Never a day without pain.

In the support group, I daily read of folk who have constant pudendal neuralgia pain.  No flares for them.  Well, they do have flares.  They just also have constant pain.  They are driving and flying around the world trying to find someone who will help.  Today, I read of a woman who went to Turkey to a purported specialist there ... one who made her ever so much worse.  Really, pretty much anyone these days—with the mesh class action lawsuit— knows that you don't muck around with the pelvic floor.  Only the desperation of such terrible pain drives one to do even that which they know was foolish.  The beauty of her post was that not a single person shamed her for her decision.  They just gave her empathy for her increased suffering.

I cannot imagine how any of them live a single day with constant pudendal nerve pain, much less the years some of them have been suffering.  It is totally understandable, to me, those who post the days, weeks, months, and years they have suffered ... that they have chronicled every second of that time.  I live in constant fear of joining them.

I have had constant pain ever since I very clearly bothered the nerve sitting on my backside for hours at a time working on sealing the porches.  It very much feels as if I have a broken tail bone again.  And it does not surprise me that one of the "treatments" for pudendal neuralgia is the removal of the tail bone.  But it is not the bone.  It is the nerve.

I have managed that pain by the purchase of a special cushion.  If I sit on it, the pain lessens and becomes bearable.  I have yet to get the courage to bring it to my appointments, but sitting on those hard chairs flares that particular pain up again.  What I plan on doing, though, is to bring icepacks.  Those are more discreet, you see.  I haven't yet figured out what to do about sealing the back porch next week.  I think what I might do is tuck a rolled towel inside my bike shorts in the shape of the cushion to see if I can keep the pain at bay.

The researcher in me is a bit fascinated that I have had pain in all three branches of the nerve.  I have numbness and tingling vaginally, as well as the excruciating pain with the use of a speculum in an exam.  I have the sitting-on-a-stone pain (I LOVE that description that I found used frequently in the support group) that started after the porch work.  And then I have the terrible, terrible flares when stool presses against the nerve ... sometimes.  It is that sometimes to which I cling.  May it not become always.

For how would I bear that?

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