Monday, September 25, 2017

In a different light...


A lot of Christian folk I know do not revel in the prayerbook of the Bible the way that I do.  I have heard, on more than one occasion, that the Psalter is difficult to read.  And I have heard that they are not relevant.  Boggles the mind, really.  They are so darned relevant!  And they are perfect! 

Thinking about all the memes out there, I wondered if I could try to share psalms in a different light.  I am not a graphic designer, so I thought I could just search for images that I thought fit somehow.  I wondered if seeing the image and then reading the text might somehow make the psalm more accessible. This is the first one I posted on my Facebook wall:




O LORD, rebuke me not in Thy wrath,
And chasten me not in Thy burning anger.
For Thine arrows have sunk deep into me,
And Thy hand has pressed down on me.
There is no soundness in my flesh because of Thine indignation;
There is no health in my bones because of my sin.
For my iniquities are gone over my head;
As a heavy burden they weigh too much for me.
My wounds grow foul and fester
Because of my folly.
I am bent over and greatly bowed down;
I go mourning all day long.
For my loins are filled with burning,
And there is no soundness in my flesh.
I am benumbed and badly crushed;
I groan because of the agitation of my heart.

LORD, all my desire is before Thee;
And my sighing is not hidden from Thee.
My heart throbs, my strength fails me;
And the light of my eyes, even that has gone from me.
My loved ones and my friends stand aloof from my plague;
And my kinsmen stand afar off.
Those who seek my life lay snares for me;
And those who seek to injure me have threatened destruction,
And they devise treachery all day long.
But I, like a deaf man, do not hear;
And I am like a mute man who does not open his mouth.
Yes, I am like a man who does not hear,
And in whose mouth are no arguments.
For I hope in Thee, O LORD;
Thou wilt answer, O LORD my God.
For I said, "May they not rejoice over me,
Who, when my foot slips, would magnify themselves against me."

For I am ready to fall,
And my sorrow is continually before me.
For I confess my iniquity;
I am full of anxiety because of my sin.
But my enemies are vigorous and strong,
And many are those who hate me wrongfully.
And those who repay evil for good,
They oppose me, because I follow what is good.
Do not forsake me, O LORD;
O my God, do not be far from me!
Make haste to help me,
O LORD, my salvation!

         ~Psalm 38 (NASB 1977)


I am not trying to be theological and I do wonder if it is something that even should be done.  However, I readied another one to post:





O Lord, how my adversaries have increased!
Many are rising up against me.
Many are saying of my soul,
“There is no deliverance for him in God.”

But Thou, O Lord, are a shield about me,
My glory, and the One who lifts my head.
I was crying to the Lord with my voice,
And He answered me from His holy mountain.
I lay down and slept;
I awoke, for the Lord sustains me.
I will not be afraid of ten thousand people
Who have set themselves against round about.

Arise, O Lord; save me, O my God!
For Thou hast smitten all my enemies on the cheek;
Thou hast shattered the teeth of the wicked.
Salvation belongs to the Lord;
Thy blessing be upon Thy people!

         ~Psalm 3 (NASB 1977)


[Photo: American soldier of a mechanized unit sleeping in a foxhole lined w. cardboard after long grueling march through rugged mountains. Photo by George Silk. Italy, 1944]

Sunday, September 24, 2017

Your pain...


Imagine a life free of pain, to go for a walk without fear of the rain, without a worry about a cold breeze, staying outside as long as we please, able to drink or eat whatever we want, with no pain, not even a spike. To clean our teeth last thing at night, without suffering the usual plight, to kiss, to hug to laugh or smile, to be able to sit and chat for a while, to go to lunch and meet with a friend, without our pain bringing it to an end, to continue working in our chosen career, to live without our constant fear, to just wake up and feel no pain, to love without that ball and chain. We get used to the pain and we try to cope, but we also try to live in hope that a miracle cure will come soon, which will take the awful pain away.   ~E. Sirrell

Someone posted this in the Trigeminal Neuralgia support group.  I like it, save for the last bit.  Because I do not hope for a miracle cure.  I don't believe in miracles.  And I know few are working on the condition.

I find it ... strange ... how my life has morphed into one defined by pain.  I mean, I mostly just think of my life bound by chronic illness, but I have pain every single day.  Every.  Single.  Day.  SIGH.

I cannot escape it, although I am fairly adept at enduring it.  Not the worst flares.  No, I've been rather blunt about failing there.  But pain is now woven into the fabric of my life.  It is my new normal.  And, sometimes, I do not even think of it.

I do tend to dismiss most of it, always comparing it to the devastating pain of bone cancer.  Back when I was a young slip of a girl and volunteering with a hospice group in Waco, I had two patients dying of cancer.  Both were in so much pain that the drugs they were given only blunted it.  Both were barely lucid ... really ... not lucid. They were lost in their pain and the fog of the drugs.  When I think of severe pain, that is my standard.  Who am I to complain of pain then?




So, perhaps it is a good thing that I spotted this online today.  It is true.  All pain matters, because it matters to the one experiencing it.  It is good to be reminded of this.

When I was that young slip of a girl, I went off to Africa as a missionary.  When getting my medical records together, it was determined that I needed another MMR vaccination.  I got all of my overseas shots at the county clinic to save money, something a friend taught me.  In fact, the day I got my MMR, her toddler did, too.  That was the most painful shot I have ever had.  I went around telling all the moms there that the shot was horribly painful and not to punish their kids for wailing.  I was on a MISSION to teach parents about the pain in an MMR shot!

I might bewail my misery here and on my Facebook page (where I do hope for support), but I am no longer the advocate for pain.  I am too weary and melancholy to be an advocate for anything.  But I shared the quote above because it is, in itself, a sound bit of advocacy.  It paints a better picture than I ever could how chronic pain can affect every facet of your life ... ways I think the average pain-free person would be hard-pressed to imagine.

And the meme is a good reminder for us all.
Including me.

Saturday, September 23, 2017

Taste and see...


I wanted to talk about this meme I found that calls to mind Psalm 34:8, but I dislike pulling out any small bit of a psalm as a general principle, so I thought I would start with the whole thing.  Read and savor it for a moment.


I will bless the LORD at all times;
His praise shall continually be in my mouth.
My soul shall make its boast in the LORD;
The humble shall hear it and rejoice.
O magnify the LORD with me,
And let us exalt His name together.

I sought the LORD, and He answered me,
And delivered me from all my fears.
They looked to Him and were radiant,
And their faces shall never be ashamed.
This poor man cried and the LORD heard him,
And saved him out of all his troubles.
The angel of the LORD encamps around those who fear Him,
And rescues them.

O taste and see that the LORD is good;
How blessed is the man who takes refuge in Him!
O fear the LORD, you His saints;
For to those who fear Him, there is no want.
The young lions do lack and suffer hunger;
But they who seek the LORD shall not be in want of any good thing.
Come, you children, listen to me;
I will teach you the fear of the LORD.
Who is the man who desires life,
And loves length of days that he may see good?
Keep your tongue from evil,
And your lips from speaking deceit.
Depart from evil, and do good;
Seek peace, and pursue it.

The eyes of the LORD are toward the righteous,
And His ears are open to their cry.
The face of the LORD is against evildoers,
To cut off the memory of them from the earth.
The righteous cry and the LORD hears,
And delivers them out of all their troubles.
The LORD is near to the brokenhearted,
And saves those who are crushed in spirit.

Many are the afflictions of the righteous;
But the LORD delivers him out of them all.
He keeps all his bones;
Not one of them is broken.
Evil shall slay the wicked;
And those who hate the righteous will be condemned.
The LORD redeems the soul of His servants;
And none of those who take refuge in Him will be condemned.

~Psalm 34 (NASB 1977)


Good stuff there.
Always in the Psalter.
Always.

So, the meme:





I love this.  

I love the way that it expresses the notion that it is important to consider the words that you are speaking before you speak them.  More and more and more, I am frankly appalled at what is written online, on Facebook, in new article comments, and on Twitter.  Vitriolic is the word that most often comes to mind.  

The way that hatred is spewed around and judgment passed, writing that is filled d with anger and accusations and criticism.  There is very little listening to understand and a whole lot of listening to respond (something I read on another meme).  

I think I would like to write about listening at a later point ... if I could gather my wits enough to do so.  But, for now, I wanted to focus on speaking.  There is much that I would like to say about speaking ... that I could say ... but I wanted to just capture a thought I had when I saw this meme:  Taste and see.

In the eighth verse of the 34th psalm are the words: "taste and see."  All throughout the Psalter, you have the imagery of speaking the Word of God.  Mouth.  Lips.  Tongue.  Or rather, I previously thought the imagery was of speaking.  But when I saw this meme, Psalm 34:8 suddenly popped into mind and all those verses suddenly shifted for me.

I mean, I am convinced that the reason that we need to be speaking the Word of God is so that it will fall upon our ears and enter our hearts.  For it is in hearing that we receive faith.  But perhaps ... well ... perhaps it is also in the tasting.

I know it sounds strange.  For how does one taste words?  I suppose it could mean to test them.  Is this word bitter or sweet?  What is its texture?  Would it be difficult to swallow? I think that is what the meme is conveying.  But what does it mean to taste and see that the Lord is good?

In the Psalms, you always have to at least look at both "halves" of the verse.  In this case, the conjoined thought is:  "How blessed is the man who takes refuge in Him!"  How odd!  How is refuge either an extension of or the other side of the coin of taste?  Mind boggling to me ... not being a biblical scholar or a student of Hebrew.

I think that refuge can be connected to the shelter of God's wings, which I have been told are the outstretched arms of Jesus on the cross.  That He is our refuge.  So, in this case, if you take "taste" and substitute in "test," then you have test and see that the Lord is good.  Try seeking refuge in Jesus and see the good that will follow.  Try ... trusting ... in the refuge God provides.

When I saw that meme, I suddenly thought of all the encounters of mouth and tongue and lips in the Scripture and there was this rather profound shift for me that I am, now, finding it difficult to explain. It is not that speaking became less important, because hearing the Word of God is probably the greatest gift you can bestow upon another.  You cannot know what that Word might do, but His Word is powerful and performative beyond our understanding and even our imagination.  And it will not return void.  That's a promise!

Instead, I suppose, I saw a duality in those verses, imploring us to speaking the Word of God and to taste it, to test it and see what good may follow.  To taste.  To test.  To trust ... for how else can we test the Word of God, to  consider its promises other than to trust in them?

Now, I will note that in the series that I adore and am reading over and over and over again, the idea of True Words and an original language has excited my mind and permeates pretty much every single thought I have about Scripture.

True Words have singular meaning.  You do not interpret them; your experience will not color the meaning of them.  If a thousand people listened to the same thing spoken in True Words, those thousand people would all hear the same message.  There would be no misunderstanding.  But, in the books, the language we have now is but a shadow of those words.  Even if ten people heard you speak, chances are at least half of them would repeat a message different, if only in part, from that which you spoke.

In the books, True Words give life because they are life.  They are powerful and performative.  The precision of meaning and the bringing of life, the creation that can take place with True Words, is what excites me about thinking about the Word of God.  For it is the Living Word.  It is powerful and it is performative.  It spoke this world into creation.  It is also something that I, personally, do not believe that we can grasp or understand or take in on this side of the veil.  

Don't take me wrong.  I am not saying that there is not truth in the words that we have in the Scriptures.  Just as God could cause His Word to be penned, I do believe that God caused (causes)  His word to be translated.  Man is flawed, but the Word of God is not.  

Only as precious is the translated Word of God (for me, my beloved NASB 1977), it is still something that resides on this side of the veil.  In a fallen and fractious world.  Therefore, we cannot really understand it.  I think the most perfect example of this is the word "good."  What God declares "good" is not always what we would think of as "good."  In a way, I think the word "good" might be the single most hidden word in our lives with Jesus.  And, therefore, it is incumbent upon us to be open to what good things God brings to us ... even if it is the good of suffering with Christ.

Oh, how I am fumbling what is ever so clear in my mind!  Maybe another key point I should make is that one of my most favorite descriptions in the New Testament is being "stewards of the mysteries of God."  You see, right there!  It is like Isaiah 55:8-9 crept in there.  God's ways are not our ways.  His thoughts are not our thoughts.  Therefore, we will always have mystery when it comes to the fullness of God, of this world, and of our life in Christ.  I find that rather comforting.  A relief, actually.  I don't always have to understand!!

In reading those books again and again, I have come to revel in the idea that God speaks in True Words.  Because we live in a fallen world, we cannot hear them clearly.  We cannot quite grasp them. We cannot fully understand.  We try.  I think that were theology goes wrong is when someone tries to create True Words for others.  Even with the best intentions, trying to write words that supersede the Word of God is what leads others astray, where the books written keep folk from reading the Book.  But we are human.  We are sinners.  And we like to save ourselves.  Temptation is great in the area of wanting to either be or sit at the feet of someone who knows.  Someone for whom there are no mysteries.  SIGH.

Taste and see that the Lord is good.  Take the Living Word and weigh its truth by swallowing it, by trusting in its promises, its goodness, and by taking it into your heart and mind and being so that you can see the good that will follow.  

And back to the meme:  Taste the Word of God before you spit it out, before you ridicule it or reject it.  Taste and see the good God has for His creation before declaring that Word null and void.

Anyway ... I really liked that meme.

Friday, September 22, 2017

Another flare...


When I do not have a particular bit of bodily misery for a while and then it flares its ugly head, I struggle even more than usual.  But, also, I have found it increasingly difficult to get through the flares of misery being so alone anyway.  SIGH.

Today, it was an hour of lying on the floor whilst sweating, trembling, vomiting, weak, and writhing.  Damn vagus nerve!  I was ever so sick and despairing because the offensive stool was taking far too long to move to a location that was less offensive.  Sometimes, this means going to the bathroom.  Sometimes, that bodily process happens hours and hours later.  Just as long as the stool stops triggering the nerve, I don't much care.  I just want the misery to end!

I very much dislike being so very ill, especially being so weak whilst I am ill. There is this tiny part of me that feels as if I am surely dying, even though I know that I am not.  Even though I know that this, too, shall surely pass.

It is difficult to describe how it feels to have your blood pressure plummet.  Often, I can drink Gatorade and eat something salty and feel better.  But that is the general low blood pressure.  But when that damn vagus nerve is triggered and my blood pressure plummets salt and fluid loading doesn't help.  I think it is the weakness that is the worst.  I absolutely cannot stand being helpless and, when triggered this way, I cannot really do much besides lie on the floor and ride out the misery.

I did spare a thought or two at one point wondering if it is worse when stool triggers my damn vagus nerve or when it triggers my damn pudendal nerve.  Certainly when I am in the thrall of one, it is absolutely the worst.  But when the other is stricken I am without a doubt that it is the worst.  For a couple of months now, I was convinced that the pudendal neuralgia flares are the worst.  Today, I was reminded of the agony of being at the mercy of a triggered vagus nerve.

I did manage to text my dear friend Becky, asking if she would call me on her way home from work.  So desperate was I to not be alone with my misery.  She did call, just moments after the misery had passed.  I felt obliged to tell her that I was better because I know that she's still adjusting to working full-time and arriving home after the children are back from school.  Even so, Becky showed me the mercy of a lengthy, loving visit.

Although I did not address such with her, the call helped me with the shell-shock that always follows the great flares of bodily misery.  After a migraine or a pain flare or a blood sugar crash or a blood pressure plummet, I am felled by the cessation in a different and strange sort of way.  It is hard to adjust to being at great war with your body and then suddenly find the battle ended.

I mean, I am ill every day.  I battle exhaustion and weakness and dizziness and nausea as par for my course.  At times, I have to gather my foggy wits and fumble my way through the day, in addition to being ill.  And then there are the flares.  Or "episodes."  Episodes is what I see folk call the greater flares of illness on the dysautonmia forums.  I find that word ... odd.  I know that the word "flare" is usually reserved for an escalation of pain, but I think it fits with an escalation of illness.    

Today was a particularly awful flare.
SIGH.

Wednesday, September 20, 2017

Falling again...


If you have read my blog in the past, you might remember all those tear-filled posts about my hair falling out.  Before my thyroid was controlled ... before I even knew it was my thyroid ... I despaired that the only thing I have ever liked about my body was falling out.  Oh, the times I spent huddled on the floor of the tub in my showers with such large collections of strands of my hair in my hands!  Well, imagine my despair when I learned that Sjögren's Syndrome can make your hair fall out.

I haven't been writing about it this time round.  And I haven't shed any tears.  Now, I cannot shed any tears, but still I have had no tears for my hair.  Mostly this is because I am grieving for ever so much loss that I cannot spare anything of me to grieve this loss.  SIGH.

A month or so ago, I was all ready to cut off my hair.  I talked with my dear friend Becky about it.  I collected photos of styles to bring in to the woman who did such a good job on my hair last Spring.  And I made an appointment.  I was planning to cut off my hair because I was weary of the pain in my head.  My chronic headaches have been especially difficult to endure now that I cannot take my beloved, always effective ibuprofen.

But as I was getting ready to leave, it dawned on me that my hair might not be there to grow out again should I find help for the headaches.  That thought shocked me into stillness.  I haven't done the math, but most of my life I have had long hair.  It is a part of my identity to me.  And, as I said, it is the only thing I have ever liked about myself.

When the shock wore off, I decided to just leave my hair along for now.  I mean, with the distressing cluster of strands coming out in the showers, whenever I brush my hairs, and if I run my fingers through it, surely there will come a time when cutting my hair will be prudent.  I shall be imprudent for now.  Wearing buns that make my head ache.  Wearing silly braids at 50.  Wearing my hair down even when the heat is felling me.

Truth be told, it isn't just the hair in my hands that make my showers difficult.  There is ill health that follows the strain of the shower, especially the effort of having my arms raised above my head.  There is the drop in blood sugar that usually comes after.  And there is the upsettenessed that comes whenever I have to face my own nakedness and the need to touch my body.  SIGH.

So, having to face yet another loss and having to endure yet another battle is despairing.  But I have no tears this time at the sight of my strands of hair falling away from my head once more.  Simply resignation.

Tuesday, September 19, 2017

Please don't...


Lots of resting, which means lots of thinking.  And, these days, thinking draws me to a quieter place ... and I lose days here.  SIGH.

I was thinking last night how Amos doesn't like to be touched or hugged, either.  I mean, when he is afraid, Amos wants to be comforted and most of that comfort comes from being held.  Sometimes, I bend down and sit back on my heals, and Amos tucks himself against me with a great sigh of relief.  If I try to stand before he is comforted, Amos will beg me to pick him up.  The tighter I hold him, the more he relaxes.  And when his trembling subsides, I set him down.

When I am needing him especially, I call out "Sweetie Pie."  Amos understands that I am asking him to come and be with me, whether I am suffering on the floor or on the toilet or wherever I have been stricken.  He comes and comforts me, not minding how tightly I clutch him.

But if he is not afraid and if I am not in deep need, Amos prefers not to be touched unless he initiates the contact.  He will press his body against me, whilst we are lounging about, but if I go to stroke his head or body or even paw, Amos will startle or flinch and then pull away from me.  I try not to feel hurt, for he is a rather affectionate pup, but I do wish I could stroke his back like a regular dog.

However, Amos is not a regular dog.  He is a dog with PTSD.  He is a dog who was forever changed by that blasted pit bull attack.  And he is a dog for whom touch is forever marred.

That is why, as I have noted, going to therapy with me is a double-edged sword for Amos.  He does not want to be separated from me in any way, shape, or form.  So, now that I sometimes take him with me when I have "going out" clothes on, Amos believes he should be with me at all times.  But going to therapy means that he is confronted over and over and over again by folk who believe that their need to touch him outweighs his desire not to be touched.  He finds a world that is not very supportive or understanding.  And it saddens and frustrates me to see my dear puppy dog forced to battle his fears over and over and over again.

Please don't touch me, shouts Amos as he flinches and tries to avoid the outstretched hands.
"Please don't touch him," I say, explaining that he was attacked by a pit bull and struggles with touch.
No one listens.

Even in the safety of home, Amos is often startled by my movement, often leaping off the sofa and scampering away in alarm when I accidentally nudge him whilst shifting my legs.  Anything and everything startles him, my little hypervigilent Fluffernutter.  Chief amongst those things is touch.

I get that.
I do.
I still wish it were different.

For him and for me.

Saturday, September 16, 2017

Finished floor...


Looking at the weather, I made an executive decision to put off the sealing until today.  The overnight low was still a bit low and the steps were quite dewy Friday morning.  Plus, well, I am the queen of procrastination.




It took me two and a half hours, a bit longer to than I wished, but it is DONE!  DONE!!  DONE!!!  That means all the wood tending on my porches is done and should not be needed again for two years.  All I will have to do is keep them clean ... I haven't done this in the past, so I hope to get better.  I have a blower and, now, a power washer.  Surely I can be a more responsible homeowner with such great tools, eh?

Now it is the Time of Waiting.  I really do like the CWF sealer, but it takes eons for the wood to dry.  You would think that a full 48 hours would do it, but I have found the wood still a bit tacky at that point.  However, I oft find myself putting everything back out on whatever porch or deck I have sealed at that point.

Monday, a storm is predicted, so I need things to be all set up.  The good news is that the steps, which are not protected by the porch ceiling, are in the sunlight.  So, I am hoping they will be good to go by the time the storm arrives.

It was a toss-up between the possibility of heavy dew and the impending rain.  I hope I made the right choice.  The ex-perfectionist in me is okay with that.  I made the best choice I could.  And I did a good job tending to my porches ... including remedying the error I made up on the airing porch.  Living with chronic illness and chronic pain, I did the best that I could.

Would that it were easier to learn to live with that.
SIGH.

Thursday, September 14, 2017

Life is hard...


I am sitting here, in the wee hours of the morning, battling violent waves of nausea and weeping my dry tears.  I just got sucker punched by the third episode "The Good Karma Hotel."  I'd be in bed but for the terrible, terrible nausea, just 12 hours after another terrible, terrible bout.  I had been watching "Vera" for a while now, along with the other shows I've been streaming, and finished that.  So, since I am so ill, I thought to distract myself with something else on Acorn.TV.  I had forgotten about starting "The Good Karma Hotel" and thought I would watch one more episode.  Like I said ... sucker punched.

Acorn.TV is a streaming service of British television, which includes shows from England, Scotland, Canada, Australia, and New Zealand—the countries whose shows I've watched thus far.  It is a mere $4.99 a month and, in my opinion, one of the best bargains on the Internet.  It's selection is not large, but it is adding shows on a regular basis.  And it has such good ones.

"The Good Karma Hotel" is set in India and is billed as a cousin of sorts to the bloody awesome movie "The Best Exotic Marigold Hotel."  The first two episodes wander a bit, and let me to think the show would be a light-hearted look at life in India.  Alas, the third episode reminds you just how hard life is.

Weeping.
Aching over the stories.
Angry over my lack of tears.

My heart hurts.  My entire being hurts.  Were it not so rude, I think I would call my dear friend Mary and wake her up just to tell me a story or two, to her hear say my name, and to hope she remembers that I long to hear the Living Word read to me, even though I rarely ask because I feel as if I do not ... deserve to hear it.

The funny thing is—if you appreciate macabre humor—after I posted about wanting to die, I had two suggestions of methods given to me.  Both I had not considered.  One, however, has brought me such relief as to say that there are no words big enough to convey just how relieved I am.  The method suggested will work, as opposed to my past attempts to die.  It will work.

The thing is, I do not exactly how know to go about dying from carbon monoxide and your car.  And I set a boundary for myself:  I will not Google how to die that way until the Pundenal Neuralgia pain is constant.  I will not look or learn or plan.  But I know that I have a how now.

I know that, as a Christian, I shouldn't want to die.  But I also cannot fathom why anyone would want anyone to live with such severe pain.  Both Trigeminal Neuralgia—which I now have bilaterally—and Pudendal Neuralgia are devastatingly brutal.  Trigeminal Neuralgia is often called the Suicide Disease with the worst pain known to man.  Those who have Pudendal Neuralgia will argue they have that title.

I have both.
And Occipital Neuralgia.
And neuropathy
And migraines
And arthritis.

My life is now marked by pain.  I'd add to that list the constant burning and stinging in my eyes from the Restasis, but that's just a side effect, not a disease or illness or condition.  The rest ... well ... as I told Mary I am managing the pain now.  I do have medications that are blunting a significant amount of the pain, save for those severe Pudendal Neuralgia flares.  However, I deal with the muted pain every single day.  Every.  Single.  Day.

I walk in fear.
I sleep in fear.
I exist in fear.

I fear the next severe flare.  I fear the escalation of all the neuralgias and the neuropathy.  I fear the day when the muting falls away.  I fear a life of constant, excruciating pain.  I have gained quite a bit from being in the Facebook support groups, but I have also had an intimate look at those whose diseases have progressed.

Life is hard.
Brutal, even.

I would not be here ... I am absolutely convinced ... without the magnificent drug baclofen and without gabapentin, even though I deeply resent the massive weight gain that drug has caused.  I would not be here without the help with the pain that I am getting from those medications.  And from Celebrex.  Never forget the Celebrex.

But I would not be here, too, without Amos.  I wouldn't.  Who knew a dog could be so loving.  He's learned a new word:  Sweetie Pie.  If I speak that, Amos comes running for he knows that I am in dire need of his companionship, that I am struggling to get through the moment (and minutes and possibly hours) before me.  Some symptom has reared its ugly head and knocked my spirit flat.  I cry out and he comes running.

I am lonely and I am ill.

Life is hard.

Tuesday, September 12, 2017

Cleaning fest...


In preparation for sealing the back porch on Thursday, now that my firewood is all gone, I got out the power washer and set about tending to some cleaning tasks on my To-Do list even though most were for once fall arrives.  You see, we've been having unseasonably cool weather, so I thought to jump on the sealing, at least, because I need the overnight temperature to be above 50.  Lately, it has been in the 40s at times!  However, getting the power washer out and set up and then breaking it down and put away are two exhausting endeavors for me, so that is why I just ran down my list of cleaning tasks.




It really does amaze me how dirty the front porch was already.  I mean, I just power washed it and sealed it a couple of months ago.  Now that I own a power washer, I had intended that I would wash the porches at least twice a year to keep them up better.  I also should blow the dirt off of them, too, since I have a blower.  The issue is that my power cord is 100 ft and getting it out is a bit of work. I do, however, have a SUPER DUPER blower that my mother gave me a few years ago.  Anyway, the point is that I want to take better care of my porches.




Whilst I was cleaning the porches, I also cleaned the siding, the ceiling, and the light fixtures (all the bug activity residue around them).  I am well-pleased with having a clean front porch again!




The back porch is cleaned and ready to be sealed on Thursday  Oops!  I just checked the weather.  The temperature and lack of rain opening will not be Friday and Saturday.  So, I will probably try to get this done on Friday.  Either way, the back porch will be ready.




I haven't washed the car in five or six years.  I know that I washed it once after moving here, but I think just once.  I've never had the money to pay to wash the car and I have not felt strong enough to do it myself.  I wondered if I could clean the car with a power washer and I could.  I probably still should have used a sponge, but it is mostly clean.




I've wanted to clean the garage floor ever since the power washer was delivered to my doorsteps!  It was rather filthy when I purchased the home, and I haven't kept up with blowing it out as much as I should.  Then there was the car dirt.  And ... well ... Amos used to "water" my tires until I FINALLY taught him to "stay" at the doorstep instead of coming into the garage with me.  He also watered the soil supplies, so there were stains in that area, as well as the four spots where the tires rest.

I did not use any cleaner or a stain remover.  The job would have been MUCH easier had I disconnected the front hose and used the back hose on the power washer, but that would have been more work for me and more walking.  You see, I have to be as miserly with my steps as possible when trying to work.  I am tickled pink with just how much ICK came up off of the garage floor.  I think the concrete looks great for being 97 years old (yes, there are two cracks in it).  I think it will look less stained once it is dry.  Eventually I would like to see if I could get some concrete cleaner or something to do a more thorough job, but I am well-pleased with this first pass.




There is a long work bench on one side of the garage, which I decided to try and clean at the last minute because it was basically black with grime.  I forgot to take a good "before" photo, but you can see in this shot, especially on the back board, the difference between the uncleaned area and the cleaned area.




There is still a lot of paint and such on the boards, mostly on the front one, but I am well-pleased with how much ICK I was able to remove.  Now, I'm dreaming about getting out the heat gun and scraping away paint and then sanding and sealing the wood.  My dear friend Mary suggested I make that a Spring Cleaning task.  Perhaps she is right.  I am, however, a rather impatient homeowner once I determine there is a need to be met.  I think it would right cheery every time I pull into the garage to see a lovely, restored work bench along the wall.

I would also like to remove everything from the shelves, particularly from two cubby units—one adjacent and one atop the work bench—and power wash them, too.  Mostly, I think that they are just dirty and it would be the best way to clean them out.  I wouldn't attempt to seal them, too, because I do not think that I could get the wand in them at the right angle to get down to ... base?? ... wood (or whatever you call it).

You see, I have at least a half-dozen dreams about making my garage prettier and cleaning the cubbies is one of them.  I would also like to get all of the knobs from the knob and tube wiring off of the wood walls.  I would like to hang a few more things (which would mean help since I have learned that I cannot hammer into old hardwood), so I can organize by type all the things I have hanging up on the walls.  I would like to tear off the remaining tar paper that is scattered here and there along the walls (and the floor where I am constantly picking it up to put in the trash).  I would like to paint the old metal cabinet that is sitting in the corner (one of the coolest ones I've EVER seen).  [It is half drawers and half locker.  It must be a remnant from some factory here in town.] And I would like to better organize the stuff that is up in the rafters of the garage.

Mostly, what I want to do is a whole lot of labor intensive prettying up of the garage so that it looks as neat and organized as possible without actually spending money on organizational doodads.  I get exhausted just thinking about it.  At least the floor is in much, much, much better shape now.

Anyway, in a nutshell, today I had a cleaning fest.  Whilst I fainted several times, I am well-pleased with all the grime that was banished this day!

Saturday, September 09, 2017

My days...


I battle with bouts of severe symptoms in the early hours of the morning and finally fall asleep some time around 7:30 AM.  From there, it is a continual round of waking up from dreams, crawling out of bed, tending to my bodily needs, trudging downstairs to fetch fresh icepacks, trudging back upstairs to crawl back into bed, only to repeat about every two hours.  Over and over until I crawl out of bed for good some time around 4:00 in the afternoon.

I dress, make the bed, grab my basket of things, and trudge downstairs with Amos.  I take Amos outside and fill the water fountain on the front porch.  Then, I collapse on the sofa and long to take a nap.  Seriously, I could sleep another couple of hours after all of that effort.  I am so weary that I usually do not even read or stream or listen to music.  I sit.  And give thanks for Amos' presence.

After a long, long rest, I prepare something for me to eat and fill Amos' bowl.  By the time I've eaten and cleaned up, it is some time around 6:00 PM.  Since I now take my meds at 5:00 AM, 6:00 AM, 7:00 AM, 12:00 PM, 4:00 PM, 6:00 PM, 7:00 PM, and 12:00 AM, I feel like what I do most days is take medicine.  And from the time I awake, I've got three alarms going off in the first three hours of being up!

I try to get my walking in some time around 7:00-ish, depending on how well I feel after I've eaten and how dizzy I am from weariness.  I walk.  I sweat.  I collapse on the sofa.  Usually, I end up napping in the mid-evening hours because I am just so tired!  All.  The.  Time.  Then, I wake up around 10:00 PM and have a window of productivity that I try to seize if I'm not battling a second bout of the Violent Waves of Nausea that rule my life.  So, when the rest of the world is winding down for the night, I'm trying to enjoy something of my "day."

Tonight, that meant continuing on my mission to refill my larder.  I got the bacon bits and sun-dried tomato chicken meatballs made.  That leaves only baking.  One of the things I wanted to make are honey graham crackers, but that dough has to be refrigerated overnight.  So, I wanted to get that done this evening, even though the baking would be done tomorrow.  I also wish to make Irish Soda Muffins and one of my cookie mixes.  You see, the dessert shelf in the freezer has mostly empty glass containers on it at the moment.  I would like them filled back up!

I feel like I've been cooking all week, and that's because I have!  And because I haven't been cooking in a while.  I know I need to do so when there is no more room in my mason jar drawer.  The dessert shelf has been empty for eons, so I'll be glad to have some more options in there.  Since I have space in the basement refrigerator freezer and I'll be opening buttermilk for the muffins, I am thinking on also making Double Chocolate Dr Pepper Cake and some more homemade ranch dressing.

One of the small gains that I have made lately is that I have finally come to terms with the idea of sleeping when I can.  If I cannot sleep, I won't lie around in bed.  It isn't insomnia.  It's symptoms.  When I can sleep, I do.  Even if that is all day.

I keep trying to sleep only at night, like a normal person.  But the cycle of nausea and other symptoms are worst in the wee hours of the day.  I schedule as many appointments as possible in the late afternoon and sleep when I can.  When I can sleep and wake more like the rest of the world, I do find myself rejoicing a bit.  But if it is early afternoon and I'm still so dizzy I can barely stand, I just fetch more ice packs and sleep more.

It's a good thing Amos is amenable to sleeping at any hour of the day.  Basically, he's happy as long as he's with me.  The same is true for me, though it is difficult for me to hold on to that bliss when my body ills overwhelm me.

I'm still a bit shell-shocked from yesterday morning...


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?

Thursday, September 07, 2017

A few things amongst the resting...


The mail from California came speedily across the country to bring me my laptop power cord!  I was well-pleased!!  My computer is charged back up and I have my faithful companion back.  However, I think that the last time I tripped over the cord I might have jiggled the connection port in the computer.  I think that because it seems to be slightly canted.  And, if I put the power cord in, sometimes it doesn't connect.  All I have to do is pull the cord out and then re-attach it a bit gentle like as I wiggle it a bit and the lovely light on the power cord comes on to let me know it is starting to charge.

I really, really, really need to work on no longer tripping over my lap top power cord.
And dropping my beleaguered, four-year-old iPhone.
SIGH.

Tonight, I have been cooking a bit.  Two days ago, I had the final jar of Beef Stew with Beer.  I knew I was low and had bought a hunk of beef last month (or was it in July) to make some more.  So, I thought that I would tackle that task.  I had forgotten, though, just how exhausting it is to make

It takes about 30 minutes just to braise the beef and that doesn't include cubing and dredging the beef.  Then there is the stripping and chopping of all the herbs.  And the mincing of the onion and garlic.  And chopping up the red potatoes and the carrots.  Lots and lots and lots of labor on this recipe, but oh so tasty! 




I found this article to be rather helpful when I embarked on learning to make a good beef stew.  However, I tend to break one of its cardinal rules:  don't make a roux.




You see, I LOVE ME a thick beef stew and I am not much interested in learning to use cornstarch.  So, that means I use some butter, flour, and liquid from the stew once it is through the final cooking stage.  Isn't my roux just beautiful?

Whilst harvesting for the stew, I picked too much rosemary, so I softened a stick of butter and made some rosemary butter.  I also brewed some more tea.  But mostly I spent the whole evening making stew.

I cooked because I had some overwhelming thoughts and emotions at therapy today.  At one point, I started to weep, only I have no tears.  My face become splotchy and my eyes become wet, but that is it.  I find the absence of tears a terrible reminder of the fact that I am ill.  I also grieve the loss of the comfort of tears.  All that flickers through my mind even as I try to remain present in the room as we talk.

I wish I could have a hug on Thursday afternoons.
And company.
And french fries.

I took care of the latter.

I do not have another appointment until next Thursday, so I have plans to mostly rest more. Although, I do have a few more larder things to refill.  I need to make more sun-dried tomato chicken meatballs and bacon bits.  That way, with the naan and tortilla dough balls and the Chipotle Chicken Chili that I have made recently, as well has tonight's stew, I will have my freezer meals stash filled-up once again.

I also have a homeowner goal in the next week, too.  I would like to try and get the back porch sealed when the temperature rises again next week.  I've burned down my firewood, with just enough for one last fire left.  I think I can move that much.  I have to move the grill, the recycle bin, the table, the rocking chair, and the firewood rack.  Then, I will power wash the porch and steps.  Next, I will seal them.  Finally, I have to move everything back.

Next Saturday and Sunday it looks like we will have a space of clear, warm weather.  So, I hope to clear things off mid-week and do the power-washing with the energy of the upsettedness after my appointment next Thursday.  That way, the wood has a full day to dry before I seal it.  Maybe even two.

The last task I wanted to get done before winter sets in is to paint the windows in the attic and the storm door on the basement entrance.  I had wanted to get it all scraped down and paint both sides, but I shall do the less-than-perfect job and scrape what I can, prime, and paint the outside.  That is where the exposed wood is.

Yesterday, I did have a good homeowner victory.  I needed to replace the bulb in the light outside the basement entrance.  It is about five years old.  And so it is also rather dirty.  Since you have to take the thing apart to change the bulb, I decided to clean the glass panes and the reflective pane before putting it back together.  I was not a perfect homeowner, because I only flicked the majority of the bugs out, rather than clean them all.   The true victory is that I neither fell off of the ladder, nor did I faint with my hands up above my heart.  I had several bouts of pre-syncope, but no syncope.

So, a bit of productivity scattered amongst several days of resting.  A little this and that.  And a big that planned for next week.

Tuesday, September 05, 2017

Resting and lavender goodness...


It is werid not having a power cord for my laptop.  I didn't realize just how much I keep myself company with it.  I am hoping the cord will arrive by Friday, but it is coming snail mail from California, so it could be not until next week.  Meanwhile, I'm rationing my computer use.

I still have the cord attached to the computer, because every once and a while, I can jiggle it back alive, though not at all yesterday.  Anyway, today, I tripped over the cord again!  I really need Becky here to help me figure out how put the laptop down in such a way that I will not trip over the cord.

I finally finally managed to get Amos bathed today.  He is still swaddled, several hours later.  I swear he is becoming even more morose about being bathed.  He collapses in my arms when I take him out of the tub and becomes a dead lump of sad canine.  I wrap him up as if he is a burrito and then wrap him again in the weighed blanket.  That way, he is well smushed, since being smushed is his most favorite state.  Even so, the lavender goodness is wafting from his body.  Such peace I get from my lump of puppy dog.

I also had the chilorio again, even though I had it just two days ago.  That is one of the good things about my small and quiet life.  If I want to repeat a meal again and even again, no one complains.  That stuff is amazing!  It is a Pati Jinich recipe, so you know it is going to be good.  It is, to me, like a barbecue.  The flavor is perfect when pared with mashed avocado spread across a fresh cooked flour tortilla and then rolled up as a burra.  Mmmmmm!

I think it might have been my last jar.  I need to look.  But I do know that I have more pork in the waiting.  I might not have the peppers, though.  In any case, I shall be making another batch of that magnificence very, very soon.

Meanwhile, I'm still resting from my spate of frenetic labors in my effort to ignore my upsettedness.  And resting.  And resting.

Sunday, September 03, 2017

My day...


It was another resting day, for me, since I ran myself ragged Thursday night.  Mostly, I snuggled with Amos.  Although I did torture him a bit with a haircut.  He's gotten so wiggly during them that I now do his haircut in stages.  Lately, I've been a bit negligent about his belly and his legs.  So, that's what I concentrated on tonight.  I had planned on giving him a bath since I need to give him another foot treatment tomorrow, but I just didn't have enough energy.  I am looking forward to some lavender aroma therapy though!

You see, Amos has started the incessant licking of the skin between his toes again, so I got out the foot treatment from June.  The vet told me that I could use it as needed.  If it wouldn't be more money, I think I would tell her that I would like to try oral medicine this time.  The treatments were to be six over three weeks.  We've done two, so there are four to go.  Amos is not much liking them, but he tolerates them.  We do them at the kitchen sink and I give him a mini-treat (the only kind he gets) every two minutes as a way of getting through the ten minutes of standing there before we can since off the medication.  Fun times.

I did take a shower myself, which is why I didn't bathe Amos.  In years past, I could do both, but no longer.  Showering is so darn exhausting!  Of course, so is bathing him.

So, three naps, a bit of a trim, and a shower.  That was my day.  Well, that and ruining my computer power cord for the second time.  ARGH!  I hate having to buy another one of those.  Such a darned klutz am I!!

Saturday, September 02, 2017

A better theory...



In the world of chronic illness, more specifically invisible illness, the Spoon Theory abounds.  Written by Christine Miserandino, it basically attempts to explain what it is like to live with deep fatigue and other chronic illness symptoms.  In a nutshell, you start the day with a set of spoons to use throughout the day.  A healthy person might use a single spoon to take a shower, but someone with chronic illness might blow through four spoons trying to get clean.

That's me.

I feel dirty, socially, these days because I only shower every other day.  Even with walking and getting all sweaty.  On the days in between, I take a washcloth "bath."  I've become adept at that and do feel good afterwards, but I become ashamed when I think about the fact that I no longer shower daily.

But I digress.

Basically, those with chronic illness oft run out of their daily allotment of spoons before the day's end—sometimes within just a few hours—and oft doing things others would not find difficult, such as changing clothes or making a meal.  In the chronic illness community, folk oft identify themselves as "spoonies" and address their posts to their "fellow spoonies."

It is almost sacrosanct this theory.  However, I have never thought that it fit my life.  Plus, as an ex-literacy professor, I find the analogy wanting.  I mean, first, what in the world do spoons have to do with energy?  Or other symptoms?  I honestly haven't been able to connect with the theory or with folk who are "spoonies."  I think identifying yourself as that is just plain silly.  But, oh my!  If I ever wrote such things in any of the support groups I'm in, I'd be booted before the post was a minute old.

My dear friend Celia sent me this post the other day, entitled the Matchstick Theory.  The author had me at the title!  I mean, my goodness, what a better metaphor!  Spoons you can reuse, even if you merely lick one or wipe it clean with a napkin.  Matchsticks can only be used one.  And, as Psarah Alice points out, it is possible for a matchstick to break before it can even be used.  Or it might be a dud when struck.

If you click on the link, you will encounter strong language, including that one word four-letter word that seems to be unforgivable in some circles.  To me, it is just a word.  And, to me, it is one that can express the shock and overwhelming anger and despair of the moment ... at times.  Perhaps it is merely speaking such a forbidden word.  But if you feel harmed by reading it, then DO NOT read the linked article.

To me, though, such language aside, it is a theory that speaks to me, to my life.  It fits ever so much better.  Everything is harder.  Trying to explain that is just plain frustrating.  Especially because you always encounter the "But I've seen you _________!"  Yes, whenever I get a spate of energy (usually fueled by upsettedness) I will work to be productive or take control of something (such as organize, downsize, or clean) to offset whatever is distressing me. I know full well what it will cost me, but I don't care if I'm flat on my back for a while.  I'm using the upsettedness to serve me rather than to fell me.

The price I do not count and one that wounds me is that  "But I've seen you ___________."  I think that "best construction" mentality would be that the person is genuinely confused and just not thinking about his/her words.  But it comes across as disbelief, as accusing me of lying.  Of course, the honest response would be:  I know my life and choices don't make sense, but neither does a living a life with chronic illness.

Some of its insanity is spelled out in the Spoon Theory as examples.  And the Matchstick Theory has even better ones (in my opinion).  I sometimes try to give my own, but the words sound hollow in my own ears.  Even to say that I am exhausted doesn't have the meaning that it should.

Below is an excerpt from the the Matchstick Theory, with a bit of strong language but not the most objectionable.  It is enough of the post to get the gist.  And, maybe, understand why I was so thankful that Celia sent it to me.  

In the sending, I hear her say:  I see you, Myrtle.  I hear you.


The first time I read Spoon Theory, like many others, I was inspired. As a woman who has dealt my entire life with chronic pain what grabbed my attention first was the friendship between Christine Miserandino and her friend. In any true friendship one doesn’t just share the joys and pleasures of life. One seeks to share in the pain, to understand it, and if possible to help hold that pain for the other.

Christine had this kind of friend. A friend that knew her inside and out, had earned the right to ask “what does it feel like to be you.” I have that kind of friendship with my girlfriend Dia. She knows me inside and out. The first one to visit me in the recovery room after surgery. The one that comes over and massages me on days when my arthritis is so flared I can’t move. Hell, she even flew all way home from Texas for one of my surgeries and then planted pink flamingoes in my yard as a welcome home surprise before she left. Dia, like Christine’s anonymous friend, has earned the right to ask “What does it feel like to be you?” and expect a full and honest answer. I fully believe that everyone should feel free and easy to seek knowledge about another’s life experience and asking questions is a great way to do that. However, I also whole heartedly believe that one has to earn the answer to that question.

And that is where I have a problem with Spoon Theory. Suddenly the whole world thinks they know what it’s like to be me. Except you don’t. Now we have all these dickheads running around handing out spoons, embroidering them on samplers and asking me in a condescending way “how are your spoons today?” I’ve grown so tired of spoons I’ve started eating my Lucky Charms with a fork.

Look, Spoon Theory is great and has inspired many of us, given us a safe, friendly, non-confrontational story to share with the people we love and who are also there for us every day. The good days and the bad. The happy times and the bat shit crazy times. Forgive me for saying this, but the rest of you don’t deserve a nice, safe, friendly and non-confrontational story. For those of you that have never suffered (or suffered with someone who had) chronic pain, I give you Match Theory.

Imagine waking up each morning with one fresh pack of matches.
Get out of bed? Strike a match.
Watch it burn.
Will it burn long enough to make it down the hall to the Bathroom? Most Mornings? No. It will not.
Strike another match.

See I can get a lot of use out of a spoon. Most people can and do. That’s why the spoon analogy doesn’t work for me. I’ll use it to stir my coffee, eat my fruity pebbles and then grab out of the sink later to eat a whole tub of cookie dough. But a match? A match is a one-use item and it’s time is finite. Like my body and it’s go juice.

Sometimes the unexpected happens. Strike a match? It breaks mid strike.

Somebody with no placard has taken the last handicapped spot in the lot. The snow plow cleared the parking lot but left all the snow piled up in the handicapped access, leaving no clear egress to the sidewalk.

Some mornings you wake up with a full pack of matches but some rat bastard has ripped off the striker. You’re not going anywhere today. This is what we call a flare up. The disease has your body in a vice and you probably couldn’t strike a match if you tried. There are many reasons for a flare. It could be a sudden shift in the barometric pressure; that late-night freak snowstorm the weatherman forgot to mention. It could be stress. Your boss has warned you that project must be on her desk by end of day yesterday. Or it might just be that deep-fried pizza you ate all by yourself last night.

Then come the mornings where you wake up to the smell of sulfur. That last spark from last night’s last match has landed on today’s matches and incinerated them. 

You’ve overdone it again. Held the match for too long. Let it burn down til your fingers blister. It’s your best friend’s wedding and by god you’ll burn every last match down to ash to be there for her. Or it’s that early morning phone call. Your father’s in the hospital again and you need to fly out today to get to him.

I break off there because the rest is rather salty.

I’ve grown so tired of spoons I’ve started eating my Lucky Charms with a fork.  Hah!  I about near wet my pants over that!

See I can get a lot of use out of a spoon. Most people can and do. That’s why the spoon analogy doesn’t work for me. I’ll use it to stir my coffee, eat my fruity pebbles and then grab out of the sink later to eat a whole tub of cookie dough. But a match? A match is a one-use item and it’s time is finite. Like my body and it’s go juice.  That's it in a nutshell. A theory fleshed out with a few ways your matches get ruined before you can even use them.  And the darned obstacles you find in your way, like snow being plowed up in the handicapped spaces.  That's common in Fort Wayne.  SIGH.

Like I said, I think this is enough to get the gist of it.  And, maybe, understand why I was so thankful that Celia sent it to me.  

In the sending, I hear her say:  I see you, Myrtle.  I hear you.

Friday, September 01, 2017

The appointment...


The GP appointment was another stellar one with regard to productivity, though my wait was long and we spent more time than I intended. Well, that leaves me room for progress.  She gives me extended, comprehensive appointments.  I want to honor that and kept to my time slot at every appointment.

For one, the appointment was long because I had a long list. Part way through, I thought I should ditch the last three items, but I ended up going over them as well. She is such a GOOD doctor.  So, I think that I should keep my lists a bit shorter before I arrive.  However, we were so darn productive last month that I had a lot of reporting to do about the medication changes and about the new thing the integrative medicine specialist is having me take.  Then I had somethings I wanted to see if she could help me address.

I think I should name her Dr. Full-of-Ideas. She is always thinking about what I bring to her, even afterward in follow-up calls or messages.  Today, by the time I arrived home, I had a MyChart message from her with further thoughts and links to her suggestions.

One of the things on my list was the terrible pudendal neuralgia flare I had yesterday.  I told her my theory about why the flare was so bad when the higher dose of baclofen has been so helpful: moisture.  You see, the flares are all associated with the movement in my intestines, and, to be blunt, what moved yesterday was a rock.  I've worked really, really, really hard on getting my sluggish intestines to move and to produce moist waste.  Okay ... to be super real ... I dream of diarrhea these days.  Every time I get a warning about it as a side effect from a medical professional, I secretly hope that will actually happen.  But no.  And if you've never had sluggish innards, from start to finish those innards can make your life fairly miserable.  Our bodies are designed for movement.

I am not a water person, but I have been trying.  I drink 64 ounces a day, but I know that folk with dysautonomia often drink far, far more.  And folk with Sjögren's.  But she wanted me to increase the colace and perhaps the psyllium husk first.  I guess the best way of saying that she said to focus on how I absorb moisture rather than adding more water.  I could get up with that.  Plus, when I miss colace, I can really tell a difference.  

What I like is how she thinks about what I am taking and how I take it.  And she's not afraid to change her mind in front of me.  So, I'm not switching to four times a day.  I am doubling the third (night) dose.  But I am switching to four times a day with the Combivent, because it has been rather effective with helping my asthma, but I do notice a drop-off at the end of each eight-hour period.

So, she increased some meds and suggested I try a nasal emollient. You see, my sinuses are DESERT dry, too. My throat, eyes, and sinuses are my worst. I told my GP that I feel like a cocaine junkie because I have become adept at snorting. I snort saline all the time. And yet I have these huge, huge ... scabs ... that form high in my sinuses because they are so dry. Hi, my name is Myrtle Snorting Junkie Bernice Adams.

I've never talked to her about reframing, but my GP said that I should not think of myself as a junkie like a cocaine addict, but that I am a moisture junkie. YES!! That's certainly me.  I really like what she said and it sort of makes light of Sjögren's in a way I find acceptable.  I mean, if you can't poke fun of some of this stuff, you'd drown.

I'm not all that excited about spending even MORE money on yet another OTC product, but she found one for me to try. She even went price shopping right there on her computer so that I could order it before I even left the exam room.  I'm not excited, but it has been so hard to get someone to listen to me when it comes to this radical change in my sinuses.  I feel like it has been a lot of nodding and waiting for me to move on from one of my "complaints."  She heard me.  At first, she thought she had nothing for me (I laugh when she says that), but she then asked me to talk about it more and I described how I snort the mist in the shower and snort the steam from my tea and how I use the saline rinses all the time, but I cannot get what I need.  Hence, looking into emollients. 

She listens.

Anyway, we went down this long list and, as she always does, as I'm ready to go, my GP asked me if there was anything else. Well, she's talked about being a Catholic at some point in every visit, so I took a plunge and asked her if she would pray about me slipping back into that place where leaving the house started to seem so impossible. I told her about the folk approaching Amos and the debacle with the folk when the elevator door opened and how I was thinking about not taking Amos and not going and not ... well, I didn't really say exactly what I was thinking and Lord knows I don't even know what I am feeling.

But my GP wasn't done with her ideas.  She said she could pray, of course.  But she also started thinking about how I could solve my Amos problem.  She thought I could get him a vest to keep folk from petting him.  I have had several professionals offer to help me get him certified as a service dog.  I am just not sure Amos is in control of his own fears enough for that.  There are no rules for an emotional support animal, but those have no right of access.  Not, really, that I need right of access for therapy.  So, she suggested that I have any vest, maybe just a vest with Do Not Pet.   I think that might be a good idea.  

It would be a chunk of money.  Not being all out of sorts by taking the encounter with others and Amos out of the equation would be worth it.  I just need to think on the matter for a while.  

I do not know if it was appropriate to ask her to pray.  I don't.  But I did and I cannot take back those words.  Getting a message once I got back home was helpful.  I know she was trying to help before she heads off to her conference in Denver, Colorado.  A conference during which three days will be focused on medical ethics.  I love that I have a GP focused on medical ethics.

The two things she has no real concrete idea for is how terribly icy my skin becomes when I have cold spells and the numbness and tingling in my lips.  But I know she'll keep thinking on those things for me.  And she won't mind if I bring them to the table again.

I have been truly blessed by my old GP firing me.  Painful though it was, I, for the moment, have a GP inching me closer to a greater balance in managing what can be managed, so that I can have the strength to look for better ways to endure what cannot.