Taboo pain...

I had a terrible, terrible, terrible pain flare on Saturday morning.  So terrible I am still shell-shocked, but I am finally ready to put it here in my rememberer.  Since it is what other might consider a taboo pain topic, I thought I would post first about working out some upsettedness.

I was so exhausted during my birthday celebration that I stopped cooking on Sunday and left off the last of the Meal Plan.  That meant that I had corn on the cob in the refrigerator.  Wanting to use it in a soup (I'm not sure why), I decided to try a chowder.  Broth soups have always been a disaster for me, but one that uses cream ... well, I am good with a roux.

My Spicy Corn Chowder turned out BLOODY FANTASTIC!  I am not sure I've ever actually eaten a chowder.  In fact, I am not sure I have ever wanted to eat a chowder.  Boy!  I sure have been missing some tasty stuff!

One of the things that tickles me about making this is that, after four years of learning to cook,  I finally figured out the best way to cook with onions without having the texture that bothers me!  I cut the onions into very small cubes (about 3/16 inch) and sautéed them in a combination of butter and olive oil until they were translucent and browned on the edges.  I then used a potato masher to mush them.

You see, the other what I had been using onions was to puree them.  But, when you do that,  you end up with watery onion mush that does not brown well.  This way, I still got the mush, but it was rather flavorful.  I actually tasted a little bit of it because it smelled so lovely and nutty whilst I was mashing the onions into mush.  That discovery was such a welcome bonus to the cooking therapy I engaged in tonight.

Well, like I said, the chowder was BLOODY FANTASTIC.  It was rich and creamy and had the tiniest bit of kick to it from the raspberry chipotle seasoning that I used in it.

The funny part is that I actually made a half batch because I didn't want to waste the corn if the chowder wasn't tasty.  Now, I want to make a full batch as soon as possible so that I have a sufficiency of corn chowder in my basement freezer.

As to Saturday ... SIGH.

For at least two years (probably coming close to three now), I've been having nerve pain that is so mentally unsettling that I do not know what to do.  The pain is so severe, that whilst it is happening, I am consumed by the pain, but I drown in the mental anguish.

Saturday was so awful, so overwhelming, so magnified that I wanted to die.  I was screaming for much of the four hours of the flare.  It was so terrible I went on a frantic, frenetic search for a name to what was happening.  Whilst I am not properly diagnosed, I would bet Amos, my house, my haven, and a lifetime supply of Dr Pepper that what is killing me is pudendal neuralgia.

The description of symptoms match my pain flares perfectly and the connection to SI joint issues and MS make it an even more likely fit.  Only seeing a name that includes neuralgia just felled me.  It made my periodic pain flares more ... real ... for lack of a better word.

The nerve, for me, is triggered by the movement of stool.  The pain usually starts long before I have any sort of need to go to the bathroom, so I am in agony willing the need to arrive.  When I think I might could actually go, the process is almost always agonizingly slow.  Then, when I am finished, the pain reverberates on and on and on until the nerve finally calms down.  This time, everything was worse.  

If you had told me that the pain could get worse, I would have laughed and then despaired, thinking you didn't understand what I was trying to tell you.  But now I know it can be much, much, much worse.  Pudendal neuralgia pain is described in several different manners.  The one that fits me is ache, though that is not the word that I would have chosen.  I think it actually fits, but it seems such a poor description, devoid of the scope and depth of the pain.

It is also described has having something inserted into your rectum.  I would describe it has something roughly shoved into your rectum.  It reminds me of my childhood and my mind screams in terror.

Something shoved inside you over and over and over again.
Seemingly unending agony of body and mind.

I screamed and screamed and screamed and, for the first time, I screamed at God, begging Him to make it stop.  Over and over and over again, I begged at the top of my voice.

I don't know why.  I mean, whilst I know that God is capable of stopping the pain, I did not (do not) believe for one single moment that He would.  That is not how God works.  But I screamed ... begged ... anyway.

I wanted to die.
Thinking about that happening again, I want to die.

I did have a half sort of hopeful kind of thought.  I spent all that time sitting and scooting along the porch floor between the sanding of the airing porch and the sealing of the front porch.  Perhaps I aggravated the nerve and so when the pain flare happened again, it was magnified.

The pain didn't really end with the flare.  Saturday and Sunday, sitting, standing, and walking were rather painful.  Movement still hurt today, but more of a lingering ache than a harsh reminder of what I went through.  I suppose that the level of pain left my muscles all tense and that is why my body still hurt after the nerve calmed down.  I am not sure about that.

What is felling is knowing that I do not believe there is much hope for help.  The best action would be a nerve block, but the testing for that is fairly invasive, as in having electrodes that shock the never inserted inside of your body.  And then needles inserted to also trigger the nerve.  An injection is tried first, to see if there is any relief, and then a nerve block.  So it is a long, expensive process, and one I simply cannot do.  Even if I could somehow endure the testing (sadly I cannot have the non-invasive MRI), the only option in Fort Wayne (if the doctor would even attempt to address the pudendal nerve) are males.

I simply could not have a male examine me and test me in that manner.

It crushes me to think that I do not believe that anyone in my life really understands that.  I feel as if I get a you-could-if-you-tried somewhere buried in whatever response I get.  But I cannot.  And no one is hearing me when I say that I cannot.

I can barely be examined by a woman.  And the last time was so excruciating (damn nerves) that I am wondering how I will ever do it again.  In fact, my doctor, at the time, said she felt so bad over how she was hurting me that she wasn't sure she could do that again.  My next appointment for that exam is October 29th.

I've had three doctors talk to me about my really, really overdue mammogram, especially with my family history.  I try to speak about the last time I went, when I ended up crammed beneath a chair (I weigh too much now to get to such a place of safety) with the staff outside the cubicle telling me that I needed to leave.  There were two technicians at that time, two touching me at the same time.  For whatever reason, that triggered me and I just couldn't bear how I felt and how I couldn't stop feeling their hands on my naked breasts.

Whenever someone starts to ask me about scheduling the mammogram, I start to panic and then I flee, mentally, to stay ... sane.  I cannot even talk about why.

I just know.  I know how fragile I am inside.  I know how much of my shattered self is held together with hands that are weak and trembling.  And I am doubly weary of having to manage so much of myself with regard to the physical side of my life.  Seriously, the Sjogren's has tipped me over the edge.

I haven't slept the night through in months now.  The agony in my eyes.  The dryness in my throat.  The original pain flare.  The exacerbation of all the nerve pain I experience.  The new level of exhaustion.

My GP said she thought it would get better once I learned how to better manage the Sjogren's symptoms.  She thought it was so overwhelming because managing the disease has taken me longer than I would have expected or hoped.  That is a good thought for me.  Maybe things can be better in that regard, but it is also that there is too much to manage.  My blood pressure.  My heart rate.  My blood sugar.  My eyes.  My mouth.  My lips.  My throat.  My nausea.  My fainting.  My falling.  My exhaustion.  The list is never-ending.

Friday, I saw the eye specialist again.  The good news was that she believes we caught the damage the dryness was making to my corneas early enough that I can still correct my vision.  The bad news is that there is nothing to be done about the CONSTANT burning and stinging that I have in my eyes now due to the mediation that is helping with the dryness.  I have become used to living with that constant pain in my eyes.  But it bothers me that I have become used to living with that constant pain in my eyes.  And I still have to be extraordinarily vigilant about putting the three different types of over-the-coutner drops in my eyes round the clock.

That was another part of my birthday celebration that was difficult.  I was not quite so vigilant.  I've been paying the price ever since, trying to get back to that acceptable level of dryness in my eyes.

Of course, I am also really, really, really despairing about the fact that I cannot cry anymore.  The best I can do is to have a few tears well in my eyes.  But the steady-stream-down-my-cheeks, have-it-all-out weeping is a thing of the past for the desert orbs in my head.

That STINKS.

I was so very discouraged by the appointment that I decided to cheer myself up by venturing out to my haven to have my very first fire in the fire pit.

This was technically my third fire, because my first two attempts did not stay lit.  I am still not sure why.  I need fire pit firemaking lessons.

I was also enjoying this celebrating-my-50th-for-50-days little lantern I bought for my haven.  It is only plastic and runs on batteries, but it has an on-off switch, in addition to a timer, so that I can keep it off except for when I am out there.  I have wanted to try lighting out there to see if I would like a hard-wired light.  This one is pretty dim, but it does make me lean toward lighting.  However, I am thinking of hanging it in the evergreen that is out in my haven (closer to the table) to see if that might make a bigger difference.    And, of course, I really cannot make a lighting decision until I see the stained glass window framed and up on the wall.  At this rate, Firewood Man will not have time to do that until the winter.  BUMMER.

Anyway, when the massive pain flare started, I immediately felt as if I were being punished for enjoying the fire the night before.  No, my thoughts are not always rational when I am battling pain that overwhelms my being.  And yet such thoughts linger.

One of the reasons that I highly suspect pudendal neuralgia is more symptoms ... particularly the numbness and tingling I have in my vaginal area.  I loathe anything that reminds me of that part of my body and it is rather difficult to ignore the numbness and tingling when it happens.  I actually didn't think that the numbness and tingling was connected to having something roughly shoved inside of me, but I now realize that this is more to do with another wonky nerve than the internal scar tissue I've heard about every time I try to talk about issues going to the bathroom.

Now, I am armed with information and a list of questions ... and immersed in deep despair.

The one thing I did read that was hopeful is that some treat pudendal neuralgia with baclofen.  The maximum dose of baclofen is 80 mg per day.  I am currently taking 30, so I have room to increase the dose and, hopefully, help the trigeminal neuralgia flares that are happening ever other day or so and the pudendal neuralgia.  I plan to ask my GP about that.

As far as the other, I am toying with the idea of going to see my female surgeon about the testing and who might do a block.  She knows me and respects me, despite my weaknesses, and is probably the best medical person I could talk to about this.

But, really, unless you have experienced this terrible pain, spent hours writhing and feeling as if something is being roughly shoved up inside of you, I do not think that you can understand.  And unless you've experienced actually having had things roughly shoved up inside of you as a child, I do not think that you can understand.

How awful it is.
How unspeakable it is.
How shameful it is.
How despairing it is.