Friday, November 30, 2018

The impossible, the dream, and the Fluffernutter...

I shall declare the impossible:  I have been on such a sugar fest for reasons I only half understand that I looked at the calendar tonight and declared December to be a dessert free month.

Yes, I am serious.
Get it out of your system.

Even though I know this to be an impossible feat, being the daughter and granddaughter of two avowed chocoholics, who believe every lunch and dinner should come with dessert, I still aim to strive to gain back the discipline that I have enjoyed until ... well ... if you read here you know.  Why rehash what still distresses me when I think of it.

Needless to day, I had three desserts, including illegal Blue Bell, for dinner tonight.
A condemned woman's last meal.
Yes, desert is a meal.

[Abrupt change of topic.]

I dreamt last night that that Amos' ears fell off and that that was left was two bloody holes one the side of his head.  First one ear.  Then, as I was screaming, the other followed.  I awoke so terrified that I couldn't open my eyes.  I was absolutely convinced that my dream was real, that I was dreaming about what had happened, not about something that never happened.

I lay there for what seemed like forever, terrified, shaking, heart hammering.  Amos, being his new languidly lazy self, was rather slow to crawl his way out of the bed once he realized I was awake.  I couldn't bring my to touch him or open my eyes, even though he did not sound like a dog that had body parts falling off of him.  Finally, he gave up on his breathless whines to get me to out of bed and started smothering my face with his kisses.  Feeling the curls of his ears dragging across my cheeks, I gathered sufficient courage to open my eyes.  Whew!  Amos was just fine!

Some of my dreams are so very real that I cannot see them as dreams.  Sometimes I wake with sleep paralysis, which makes discerning between dream and wakefulness difficult.  And sometimes the terror (or shame) from my dream is so great that even though I know that I am awake and the dream was not real, I still am felled by it.

I could use prayer for the cessation of macabre thoughts about Amos. He is still with me, after all.  And tomorrow is his birthday.

Thursday, November 29, 2018

Christmas mailings...

I finished my Christmas cards tonight.  My goal was to get them done by December 1st, so I am a whole day early.  I worked on a spreadsheet of folk I wanted to sent cards to for a few weeks.  That is because it took me that long to remember everybody.  I also added columns for those to whom I wish to send packages.  Because, you know, I need me a plan for everything these days.

My small Christmas gift plan started last year, since I just don't have money for gifts.  In January, I started saving $10 a month for supplies, gifts, and postage.  My dear friend Becky helped me with my plan for gifts, and I have been slowly working on it.  I have everything ready to put the gifts together, wrap them, and get the bubble mailers ready to post.

That's the work for this weekend.

It bothers me that I don't really give gifts or treat others.  It bothers me that I mostly hoard every penny I have and all gifts and treats are really just dreams I have for myself.  Not really dreams, but desires.  Well, not really desires, but sometimes longings and sometimes just thoughts.

It is not untrue to say that I dislike being poor.  But it is also untrue for me to say that I haven't learned immensely from being so.  I wish I had applied myself to fiscal management the way that I have now back when I was working.  I was never a spendthrift, but I could have saved ever so much more money.  Now, it is all about scrimping and saving just to pay bills ... mostly medical and now dental.


I do worry that those whom will be receiving my small Christmas package, will scoff at my idea.  What I decided was that I wanted to share some of my favorite things.  Three being a very biblical number, I chose three things, but due to finances, I had to settle on two.

Is the sharing of my favorite things a selfish way to send gifts??

Wednesday, November 28, 2018


I spotted this online.  It is perfect.  And it is me!

I met with my pastor before church tonight, with much fear and trepidation, even though my dear, dear friend Mary gave me a most excellent thought to hold and to ponder last night.  

I have been so very worried about this passing of the peace thing, about it being a terrible trigger for my PTSD and how distraught I was last week and how distressed I have continued to be.  All I kept thinking was that I couldn't possibly join a church if that was a part of the regular church services.   I mean, I would be running and hiding all the bloody time!

However, I needed have worried, because my Good Shepherd had already provided for me.  My new pastor is definitely a sharp cookie in the batch.  He was aware of what was happening with me last week.  In fact, he shared with me that the woman sitting behind me was his wife.  She knew something about me and, when she realized who I must be from my obviously distressed state, she was warning off fellow parishioners who were headed my way.  I, in my abject terror, was not aware of her help.  Even in that my Good Shepherd provided.

But that wasn't what I mean.  What I mead by His provision is that my pastor said that there was no need to ever have the passing of the peace on a Wednesday night service again if I am to be there.  He said that it is a rare thing for them to do as a church ... just a few times a year.  He said that there were a few parishioners who really liked it.  So, during Creative Worship liturgy services, sometimes it is included.  But no more on Wednesdays for me.

That means I don't have to figure out which of Mary's suggestions for trying to manage the problem might have worked at least in some fashion for me.  I don't have to figure things out because Christ had already provided for me!  I was humbled, even though I was still nervous.

Even so, even quaking in my beloved boots, tonight I joined Peace Lutheran Church!

In so very many ways, I believe that it might just be a church home for me in a way that I have never really experienced.  I say that because whilst I have had church homes before in my beloved Bible Belt, I have never had a church home with a seelsorger, a carer of souls (if I am remembering that translation correctly).  I want to say curer of souls, but that would be Christ.  In any case, my pastor and my elders have already shown gentle and generous care of me.  They have worked to make me feel safe, even as they have treated me as a normal person.  It has been both refreshing and comforting to walk into the church each week.

I mean, seriously!  Who would have thought that I could find a liturgical Lutheran church with a lovely water feature right by the front door!

I've listed them before, so I shall not do so again.  But passing of the peace notwithstanding, there have been so many glaring signs that this is the place for me.  Can you have signs about church?  Is that a sacrilegious thing to think?  I don't know.  I just know that over and over and over, I have thought of how very blessed I have been from features to people when it comes to this church.

What a merciful God we have!

So, what was the most excellent thought Mary had for me?  It is this:  I do better when I know what to expect.  She is right!  If I had known what to expect with what was basically an after-hours CT scan, then I could have avoided the situation all together or at least better advocated for myself.  If I had known about the passing of the peace, then I could have avoided it altogether or at least better prepared myself.

I have been down right despairing over my freezing with that handsy CT tech.  Shut up.  Be still. Wait until it is over.  I went there and stayed there for the entire time I was changing, getting the CT, changing again, and going home.  I was frozen and numb and ashamed.  

Someone couldn't understand why I didn't just tell the guy to back off.  Or to at least stop touching me.  But that person doesn't get it.  When you are frozen, when your mind responds to trauma as fight, flight, or freeze, your entire being is engaged in that action.  You are not thinking as you are fighting.  You are not planing as you are fleeing.  You are not logical as you are freezing.  You just are that state of being.  

What fell me was that had the CT tech been a nefarious person, I would have been assaulted once more.  I wouldn't have fought.  I wouldn't have fled.  I would have just let it happen once more.  That I was right back there crushes me.

My therapist was actually really happy that I jerked away from the usher who reached out to touch me.  She said that was actually a way of saying "no."  I hadn't thought of that that way.  Instead, I was just ashamed at my terror over the passing of the peace and my outcry at the usher.  

She tells me that there is no shame, because it is my body's reaction that is happening and it is a normal reaction for me.  And she tells me that I did give a type of "no" to the usher is huge, having frozen just two days earlier.  Perhaps the trauma of being triggered on Monday gave me some impetus to avoid any such further touching on Wednesday.

I long to be the person who doesn't loathe touch and feel so very ashamed at its trigger, at my thoughts, and at my shame.  Someone said that it was difficult to understand why touch is so hard for me when it wasn't before.  I wasn't in the throes of PTSD before.  I mean, I was in that the other symptoms of complex PTSD I battle were still very much present, but I had not gone through what I went through in the fall of 2010 and then the pit bull attack in July of 2011.  Whatever resources I had that enabled me to outwardly endure that which I still mostly disliked, to pretend, resources that had already started to erode as memories were resurfacing, completely disappeared with the trauma of that time.  

I oft despair of ever being normal again.
I hate my PTSD.
It is terribly, terribly lonely and a terrible, terrible burden.

But, alas, I turn back away from those thoughts to the one Mary gave me.  Perhaps I am not so much a failure as I was caught unawares.  I had never before experienced that CT tech as a handsy person and I have never before experienced passing of the peace at that church.  So, knowing that I do better when I know what to expect, should either situation arise again, I would most likely navigate it in a more successful manner.

Her thought is one I should tattoo on my body somewhere, for I am most certain to forget it.  And I believe that it is a key thought for me to learn and embrace in my healing process.  I am mightily blessed through my friendship with Mary ... even though I've forgotten most of it.  SIGH.

So, me, a church member.
Me, better when I know what to expect.
Me, #teamcake.

Sunday, November 25, 2018

Where I am...

That  pesky non-stop nausea is back.  I didn't realize that it had finally gone.  I was thinking back to the last time I mentioned it in a doctor's appointment and it was just about two weeks ago.  So, it has not been all that long.  But it is back ... thanks to the increase in the duloxetine.


I haven't been in a good place since last Monday and that wretched CT scan appointment.  What didn't help was how church went on Wednesday.  All I can think is that I have no business trying to be a part of a church.  All I keep thinking about is how this was a portent of how all those extra services will go ... Advent, Lent, Easter.

Trying to talk about it has been a disaster for me, leaving me rather despairing.  My struggles are too much to share without burdening others, without hurting them.  Hearing that just broke me.

Feeling this way and thinking about where that leaves me has not gone well when mixed with being pukey 24/7.  I sure wish Amos could understand me, could understand when I tell him how pukey I am.  He's incredibly tuned to me when I am emotionally distraught, but not so much when my digestive system is distraught.  He's been more interested in playing "fetch," now that he's fully grasped that concept, than curling up beside me as I moan and groan.

Even with this re-set of bodily misery, I am grateful to be trying the increase of duloxetine.  I keep trying to make a chart or something to try and show how much gabapentin and baclofen have helped with pain.  The duloxetine is clearly making a difference with the neuralgias.  Even with the new one with my tongue, glossopharyngeal neuralgia, the overall instances of neuralgia flares have decreased in frequency and intensity, save for the ones in my tongue.

I have also had some days where the intensity in my hands seems less.  I cannot decide if it is because I want it to be that way or if it actually is.  Still, the duloxetine would be worth it if it isn't.

I long with my entire being for the constant shocking to stop.  Thirteen months later, I have not gotten used to it.  A small part of me rages against both he pain and the lack of control I have in my fingers from all the jerking that they do.  But another part of me merely sighs deeply at yet another new normal I must endure.

That ... and ... well ... since last Monday, I have been stuffing my face with smarties.  Millions of them.  I am not a stress eater, but I have sort of become one since the middle of October, with all of that MRI agony.  I am not particularly fond of smarties, but I had a bag of them.  Had being the operative word.

Tomorrow is a new day though, eh?  There might not be less nausea, but I have no more smarties in the house.  That's something at least.  I'd like to stop embarrassing myself with my outlandish sugar fest.


Saturday, November 24, 2018

A different kind of pain...

I have heard that it is hard to read about my bodily suffering.  And I have heard that it is hard to listen to me talk about the abuse or the thoughts in my head for it.  But I think What about me?

What does it say about me that I no longer care if what I have to say about my suffering bothers you? It bothers me and I am trying very hard to endure it.  Part of that is learning to speak the thoughts in my head so that they stop making life even harder for me.


Four days of going round and round and round with Sprint trying to untangle my account finally came to an end today.  It bothers me that, over and over again, simple things, such as an upgrade, end up being a battle through which I have to slug for days, weeks, or even months.  It seems as if nothing comes easy any more.  But, perhaps, my dear friends Mary and Becky could remind me of some victory here or there that I am forgetting.

I do forget.
And misspell.
And wonder how to form letters.
And cannot recall words.
And struggle to comprehend.
And become confused.
And mess up my bills.
And miss appointments.

I am so weary of hearing that I cannot possibly have cognitive dysfunction because I am so intelligent.

Sometimes.  Sometimes I still long to shout these things from the top of the world.  But, more and more, I am learning to let go the desire to be believed.  I think that the more wretchedness I have in my life, the less I have the time and energy to argue for that.  Only, even though trying to make the other person understand is lower in my priority scale, it still hurts.  A different kind of pain to go along with all the rest of the pain I must endure.


Today, I started the increase to duloxetine.  It is my hope that the side effects will end as soon as possible with this increase.  It it my most fervent hope that I might have an increase in the help for the shocking in my hands.


Wednesday, November 21, 2018


I don't know if it was sharing the peace or passing the peace, but whatever it was had me fighting every fiber in my body against crawling beneath the pew tonight.  Yes, I went to church.  Yes, it was ever so much harder than I thought it would be.

Tonight was a Thanksgiving service, instead of the normal Wednesday night service.  So, that meant there were many times the normal number of folk there.  I was late, but I arrived in time to still hear  the forgiveness.  I thought that meant things would be good.

Silly Myrtle.
They were not.

There was this time in the service where folk greeted each other.  I SWEAR this is a church plucked up from the 1980s/1990s Bible Belt, brought through time, and plucked down here in Fort Wayne.  OH MY GOODNESS is this a touchy feely, sappy, happy, clappy, outreachy church, albeit a liturgical Lutheran one.

When I realized what was happening, I panicked and ended up shutting down a bit, disassociating that is.  I was terrified and kept my head down, hoping all the folk milling about would just ignore me.  All but one did.  I felt wretchedly rude and terribly inconsiderate and wanted to die.  Yes, I mean that.  I wanted to have my pacemaker fry my heart in some delayed MRI accident right then and there.

And I most desperately wanted to be beneath the pew.
I almost fled there.

I realized, in that moment, how much I needed those sparsely attended Wednesday night services.  I feel comfortable and safe in them, with the few regulars and the strays that show up each week.  I get to hear everything I desire save for the acutely missed absence of chanting and I am given the Lord's Supper most services (not every service is divine).

I thought I was going to be okay until it came time for the emptying of the pews for the Lord's Supper.  This usher I've never seen before put his hand out to either touch my shoulder or help me up from the pew.  In any case, I practically fled from his touch, my heart pounding and my pacemaker revving up.  I was just appalled at my reaction towards him and fervently hoped for a sinkhole to open up right here beneath my pew.

Neither a long-delayed MRI accident nor a sinkhole occurred.

I fled from the pew as soon as the service had ended, still terrified and ashamed.  Deeply ashamed.  And I am thinking that maybe I shouldn't join this church (or any church) come next Wednesday.  For one, I really think that the sight of a 51-year-old hiding under a pew might scandalize some fellow parishioners whilst giving others heart attacks.  I could drive out and/or wipe out a significant chuck of the church membership.

For another, I know that I am still triggered from that blasted CT tech, but this is more the of same.  I am not capable of being around a large group of folk without the PTSD symptoms becoming a factor.  And I doubt I will ever be a person capable of passing the peace or sharing the peace or whatever it was that I was supposed to be doing with peace.  I have no peace.  And I feel like the biggest fraud on the planet being in a house of God.


Tuesday, November 20, 2018

Too soon...

I wept for Amos the other night, lying in bed thinking about him.  His eighth birthday is coming up and it frightens me.  That means that he has more than passed the halfway mark of his life.  I wept and curled my body around his and thought about how much he has changed.

Chief amongst the changes is how he no longer bounds out of bed in our mornings.  Instead, he lifts his head and rolls over on his back to properly position himself for some belly rubs.  When I tire, he then rolls over and goes back to sleep.  Yes, I am much more likely to get out of bed first these days!

Stick that in your pipe and smoke it!

To me, it seems as if he has slowed down almost immediately.  But, I suppose, it has been longer in coming.  And he does still frolic about the place when the mood strikes.

I love him.
I need him.
I finally understand the desire to ignore birthdays.

He has also become more clingy.  Or perhaps the word should be more drape-y.  He is more wont to put a paw on me when curled up beside me.  His desire to be in my lap has increased.  And his separation anxiety is worse.  Much worse.  Of course, that means his greeting when I return from appointments or errands or church is much greater.

Oh, how I love my Amos greetings!

I've kept Amos sheered a tad short for well over a year now.  Maybe longer.  I decided that I wanted to have him fluffy for a while, so I put away the scissors.  I had forgotten the joy found in burying my fingers in his curls as I hold him.

So very much joy my beloved Fluffernutter brings to me!

Saturday, November 17, 2018


I had a thought in church on Wednesday that I wish someone could work out for me, for I haven't had much luck.  It has to do with hope.  You know, I am not so good with that.

One of the hymns we sang started out with "Lord of all hopefulness."  I am not sure I have heard that one before, but I know the tune ... not that I could figure out where I knew it from.  I admit that I did not sing much of the hymn because I was first trying to figure which hymn I did know and then I was dwelling upon the thought I was trying to have.

Yes, I wrote that correctly.
A thought I was trying to have.

When we say in the liturgy, "our hope is in the Lord,"  I honestly do not know what that means.  I think only about hope of eternal life.  As in, hope of where we'll go when we die.  And I am not sure I've ever thought about it being anything different or ... more.

But when I saw the words "Lord of all hopefulness" I was struck by a thought that I cannot finish forming, that I cannot grasp.  If God is the source of all hopefulness, then what does that mean for me?  Is hope something that He can bestow?  If hope is something that I can receive instead of something that I have to manufacture myself....

Thursday, November 15, 2018

Words matter...

I've been trying to write this post for nearly three weeks now.  I just cannot seem to gather the fragmented pieces of my mind enough to concentrate on what I want to say.

October was Dysautonomia awareness month.  I basically failed at engaging in any awareness other than bewailing all the medical drama that I must endure, including all of that MRI agony.  But I did spot this graphic that I thought would help clarify when I talk about the cognitive dysfunction with which I struggle.

For me, the most illuminating on the list was word recall problems.  This is because "what's the word" has become a rather frequent part of my conversation.  When I think about it, it cracks me up.  I am essentially asking the other person to read my mind and tell me what the missing word is.  How insane is that?  But when I am searching for the word that is missing in my mind that is all I can think to ask.

Sometimes, I can think of associative words to try and help the listener figure out what word is missing.  But, more and more, there is just this hole.  I cannot grasp the word I want or the ones that might help define that word.  Me, the one who loves words more than words can say!  It sorrows me this loss.

What I want to write about is the word fallacious.  I came across it a while ago.  I failed to connect it to its root word and so had to look up the definition:  based on a mistaken belief.  When I read that definition, I thought of myself immediately.  It is the why I did so that is so very difficult for me to convey.

In short, I was thinking about how I believe things about myself that a part of me knows is a lie.  A part of me understands that my world view, my core understanding of self, is based upon mistaken beliefs.  However, there is also a part of me that knows those beliefs are true, even when the rest of the world is telling me that they are not.  For I know my life, my experience, my existence.

Anyway, words matter.  I will always believe that even when I can no longer tell you why.

Wednesday, November 14, 2018

Another new normal...

I've struggled to remember about church on Wednesdays now that I am going again.  I struggle mostly because it is not uncommon for me to not know what day of the week it is.  Figuring that out takes a lot of work on my part.  And, once I've gotten it figured out, I usually have to figure it out more than once or twice or thrice during the course of the day.

I begged on Facebook for help remembering my CT scan appointment this afternoon, but no one did. After my treadmill torture, I showered and got into my pajamas for the evening ... though it was still afternoon.  I had forgotten church. I had forgotten my appointment.  I remembered both at the very last moment for being able to make it to the latter on time.

I was quite proud of myself for that.
But what do they say about pride?

When I went to check in, there was a slight problem.  I was a day early.  SIGH.  I just couldn't believe it.  This is the second time, now, that I have messed up one of my appointments.  Messing up my meds is yet another new normal, as is, I fear, tinnitus, from the CSF headache that I was plagued with following the spinal tap.  Those two go along with the new normal of the constant shocking in my hands, a reality that I've had to deal with for nearly 13 months now.

I have been a bit shell-shocked ever since I learned that I went to my appointment on the wrong day.  I just cannot believe that I made that mistake.  And I fear, deeply, what that might portend for me.

Tuesday, November 13, 2018

Poor pupper...

Amos was out of sorts today, and I am not sure why.

He started the day with early morning vomiting.  SIGH.  I very much dislike when he does that.  It is just that awful yellow bile.  I read that it happens when a dog hasn't eaten in a while.  I keep thinking that I will give him a midnight snack, but that would mean taking away from his dinner or both dinner and breakfast.  And I don't think that Amos would like that.  So, I've just dealt with the periodic early morning stomach upsettedness.

Only I'm not the one who deals with it, really.
I need to do better as a puppy momma.
I just am so unsure what to do.

At therapy, he started whimpering not even half-way through the session.  Normally, he just lets me know that it is time to go at the end of the session.  Seriously, his sense of timing is rather extraordinary.  But, today, I couldn't console him.  I tried and tried, but he kept whimpering and moving about just a few minutes after I would get him settled.

When we arrived home, I fed him and started a fire.  After I ate (and ate and ate and ate, having not really acclimated to this fasting thing yet), Amos curled up next to me on the sofa.  But after about an hour, he spent the next three whimpering and moving all about.

He got up and down off of the sofa several times.  He would beg for me to lift up the weighted blanket for him and then crawl back out from beneath it.  Again and again.  Finally, I got him settled in my lap, lying on his back, sawing logs.

The way I finally got him to settle was to rub his chest forever.  I would stop and then have to start again. And again.  Poor pupper.

I wish that I could talk with Amos.  I would like to know what was bothering him today.  I would like to be able to help calm his fears when he ventures into the great out of doors.  And I would like to be able to thank him for all he does for me.

I do worry a bit, about my beloved Fluffernutter.  He just has had some pesky things crop up in his body the past few years.  We're not really over the trauma of the massive allergic reaction to the flea bite and then the continuing allergic reaction and then the tape worm (ICK).  So, I am fervently hoping that Amos' upsettedness and discontent today was not a precursor to another spate of bodily illness.

Most fervently.

Saturday, November 10, 2018

Think on me...

I had the most horrific dream of my life early this morning.

I often dream in what I call chapters.  By this I mean, I often dream, wake, and then go back into the dream to continue the "story."  Often, they are nightmares or even night terrors that I have no interest in continuing.  I will beg God to help me, but I usually fall back into the same dream.  Again.  And again.

I was bound and determined never to sleep again this morning.  But exhaustion overrode that resolve and left me falling asleep once more.  I was blessed not to return to that nightmare.

It bothers me, immensely, what my mind churns out as dreams.  I mean, some of them are so sick and twisted and horrifying that I cannot believe that they came from me.  Why would I torture myself that way?

This was another dream about abuse, but it was worse.  Far, far, far worse than anything I have dreamed.  It felled me and continues to do so whenever my mind stills.  SIGH.

I long for a thought to replace the memory of that dream.  I long for a place to go where I am safe and heard and believed.  I long for freedom from my mind ... even if for just once night.

Becky posted the words to my favorite hymn, "Lord Jesus, Think On Me," in response to my post on Facebook about the dream.  She doesn't know yet, but I have been thinking about creating another one of those laminated cards.   This time, I would like to have the lyrics to the hymn on one side, and some idea of what I should put on the other.  I am leaning toward John 1:1-5

Lord Jesus, think on me and purge away my sin; from worldly passions set me free and make me pure within. 

Lord Jesus, think on me, by anxious thoughts oppressed; let me your loving servant be and taste your promised rest.

Lord Jesus, think on me amid the battle’s strife; in all my pain and misery, O be my health and life!

Lord Jesus, think on me nor let me go astray; through darkness and perplexity point out your chosen way.

Lord Jesus, think on me that, when this life is past, I may the eternal brightness see and share your joy at last.

I've said it before and I will say it again, this is the most perfect of hymns for me.  It reads almost as if the author wrote it for me.  I wish I could do more fofrffthose just now And I just now discovered it, how well the helped me battle 

Yes, that is what I just typed.  I lost where I was going and ended up nowhere.  What is a fofrffthose?  SIGH.

Anyway, Becky's post of the lyrics warmed the cockles of my heart and told me that she was hearing me!  Those verses read more like a prayer than a song.  And it is one that I long to have prayed over me.  Again and again and again. 

I wanted Him to think on me this early morning.  
To step into my battle and help me.

Friday, November 09, 2018

The distinction...

Wednesday night, when I was getting the first half of the Shingrix vaccine, I was asked to enter my phone number.  I kept getting it wrong, and I couldn't understand why.  I tried several times before I gave up and looked at the contact information for myself that I created on my phone.  The problem was that I was mixing the first half of my new number with the second half of my old number.

I wish there were an entry on my phone for all the things that I am forgetting or getting wrong these days.  SIGH.

A couple of weeks ago, when meeting one of the elders at church, I could not get to the word cafe.  I tried and tried and tried, but it just wasn't accessible.  I then tried to describe what people do there in order to get either the elder or the usher, who was standing with us, to say the word.  After several attempts, I finally got through to them regarding the word I was trying to say.

I was exhausted.
I was embarrassed.
I was ashamed.

My therapist recently reminded me the difference between shame and guilt.  Shame is: I am bad.  Guilt is: I did bad.  That distinction is key, both in understanding the two and understanding me.

So often, folk do not understand that I fully believe and think and act and respond because I am bad, in situations where they think that I believe and think and act and respond because I did bad.

Bad.  If the honest part of me were to choose one adjective to describe myself it would be that word.  Bad daughter.  Bad employee.  Bad patient.  Because of how I was raised, it is ingrained in me, so very deeply, that I am bad and all things flow from that.

I am still struggling with the fact that I melted down with the cardiology phone nurse the Wednesday before the MRI.  I am ashamed and I am afraid.  I am ashamed because I believe I was a bad patient for melting down.  I am afraid because bad patients get fired.

A part of me knows that I was treated poorly throughout the process.  I have been told that anyone would have reacted as I did after such stressful interactions for weeks on end—months, really.  And yet I still struggle ... mightily.   I struggle and I very much dread my next appointment that is but a month away.

I wish I didn't see myself this way.  I wish I didn't know me to be bad in all that I do, including friendship.  It doesn't help that I fully believe and understand the consequence of original sin being that we are all sinners.  The spiritual weight and the familial weight combine together to nearly crush me.

I've given up, mostly, talking about shame.  It is like beating my head against a brick wall.

I did learned ever so much from Dr. BrenĂ© Brown's book on her shame research.  I believe that I have begun to develop my own resilience to shame in certain areas.  Combining that with what I know I need to hear at times, I have experienced some success in my battle against shame.  And yet there are still areas in which shame fells me.  Being a bad patient is one of them.

I often wonder what makes a good daughter, both then and now.  I wonder, but I also know I cannot go back and change anything.  Because who I am is fixed in time, in both my family's eyes and my own understanding of self, change now doesn't matter.  That ... then ... is who I am now.

As an adult, I hear the stories of the things I did wrong or the things I did that were embarrassing.  I do not hear stories of the things that I did right as a child ... or as an adult.  I do not hear words of praise or pride or encouragement.  I hear the same old, same old words that crush me anew each time they are spoken.

I started babysitting at 11, cleaning houses at 12, volunteering at 14, and working at 16.  I made straight A's and never got into any trouble.  I did my chores and then some.  I was respectful.  And I did not make life harder in our home, at least once I was a teenager.  Before that, my sister and I fought like cats and dogs for years.

I always wonder if our relationship would have been different if someone had stepped in to help us work on our relationship as children.  I know the things that my brother and sister did when they were getting high or drinking, but I believe my aggression had more to do with my life than it did with my sister.

I am deeply, deeply ashamed of how I fought with my sister.  To this day, it is a thought that I can barely touch without descending into darkness, trembling in disgust and fear.  None of my friends now could even begin to fathom the whirlwind of anger, destruction, and harm I could become.

It stopped.  I do not remember when or how.  But I stopped fighting with my sister.  I stopped raging against her, stopped hurting her.  However, I was not kind to her at times.  For example, she loved to have her hair braided.  Since she got up before I did and left before I needed to leave, I would charge her to braid her hair.  Now, if she asked, I would do it without thought.  Really, if anyone else asked I would.  But then I made her pay.  And that knowledge of myself does not sit well with me.

Even with that knowledge, I know that I was not a terrible child.  But I was never a good daughter.  And I think about What Ifs quite a bit.   What my life would be like now if I had ever figured out how to be a good daughter then.  SIGH.

Anyway, that distinction arose in therapy last time and I was not all that successful at explaining that part of my world view.  If it comes up again,  I will engage on the matter.  However, that beating of my head against the  brick wall is getting old.  And I am growing weary.

Thursday, November 08, 2018

Too much...

I did too much yesterday.  Far too much.

My neurology appointment was canceled, which was fine by me.  I wasn't up for going out a third day in a week.  I mean, Wednesday is church, which means going out.  But that was all I wanted to do.

Only.  Only I hadn't yet gone to fetch groceries for the month.  And I learned that Walgreens had the Shingrix vaccine in stock.  I thought to knock out a few errands since I was going out and hoped to be able to stay home and rest until my next appointment on Tuesday.

I had stopped by Walgreens on Tuesday, on the way home.  However, Walgreens requires a prescription for anyone under the age of 55.  I do not understand why.  The CDC has approved the vaccine for 50 and older.  And it is covered by Medicare.  I was disappointed that I had to wait longer.  I have been waiting two months already, being on three different waiting lists.  Supply is scare in Fort Wayne.

The woman who does the vaccines stepped out after I was at the register, so the vaccine took much longer than I planned.  Still, I was able to get to church on time.  Barely.  The woman gave me the shot near the top of my shoulder, instead of the back where my other vaccines have been given.  I don't have fat there!

After church, I fetched groceries, which meant coming come and carting them inside and putting them all away.  It also meant dividing the chicken and bacon into smaller portions before freezing them.  I also made some bacon bits.  And I emptied the dishwasher so that I could wash the dishes piled up in the sink.  In short, I used my shoulder quite a bit.

Too much.

Oh, my goodness!  Does my shoulder ever hurt!  The pain has been spreading downward, creating more of a sore spot as the day has worn on.  I've been taking Tylenol, which has blunted the pain a bit, but not enough.  It is good that I am doing nothing but resting today!

Since I was not able to do the MRI of my neck, I am going to have a CAT scan before my appointment is rescheduled.  I'd like to do that soon, but I would also like to not do anything for a while.  I am exhausted.

Is it weird that I was relieved I could not schedule the scan today since the order had not yet been faxed over?  I feel I should want to stay on top of the shocking in my hands.  And yet I am just so weary of everything.  I'd like a week or so before taking up the medical mantle once more.

Tuesday, November 06, 2018

You don't want to know...


You don't want to know how the vet knew it was a tapeworm.
You don't want to know how the vet knew it was a tapeworm.
You don't want to know how the vet knew it was a tapeworm.

This tapeworm trauma might just rival the mice infestation trauma that I still carry with me even though that was now over a decade ago and back in Alexandria.  EEEEWWWW!

Last December, I switched back from the really good flea and heart worm combo because it is three times the cost of what he had been on for years before he had his first flea bite and horrific allergic reaction.  I have now spent more—much, much more—on THREE BLASTED VET VISITS over his reaction to the flea bites he got this year.  Needless to say, we are switching back after this next (last pill) is used.

You don't want to know how the vet knew it was a tapeworm.
You don't want to know how the vet knew it was a tapeworm.
You don't want to know how the vet knew it was a tapeworm.

I have the heebie-jeebies.  Amos, poor pup, came home from the vet and slept seven hours without moving.  He woke, went out side, and has now been asleep for the past hour.  He becomes so very overwrought when at the vet and his body has become inflamed again.  For the second time, I spent extra money on the shot over the pills, since it works so much faster.  His skin is already less pink, which is a relief to me.

You don't want to know how the vet knew it was a tapeworm.
You don't want to know how the vet knew it was a tapeworm.
You don't want to know how the vet knew it was a tapeworm.

He happily took the tapeworm eradication medication (because it was buried in extra sharp cheddar cheese), much to my relief.  I want those pills working IMMEDIATELY.  However, I am not looking forward to seeing the result of the tapeworm eradication on the outside of his body.  SIGH.

Amos does not have enough money in his savings account to cover the whole of this visit.  He's been to the vet more this year than the past three years.  SIGH.  Hopefully, getting the Trifexis might turn the tide and Amos will enjoy a period of good health.

You don't want to know how the vet knew it was a tapeworm.
You don't want to know how the vet knew it was a tapeworm.
You don't want to know how the vet knew it was a tapeworm.

Monday, November 05, 2018



In the middle of the night last night, I started melting down.  I have such a physical reaction to when I become so overwhelmingly sad.  And I do not know why.  I was sorrowing and despairing and longing to hear the Word of God with such a visceral desire.  I wanted both to have it in my ears and to have its calm.

It still amazes me how, if you read the Word of God to me when I am grossly upset, my heart rate will drop, my blood pressure will decrease, my shaking and trembling will subside.  The Book of Concord teaches about the comfort of the sweet, sweet Gospel, comfort as in a verb, not merely a noun.  That is because the Word of God is powerful and performative.  It is sufficient.  And it is perfect.

Wondering about last night made for a weird day for me.  But it was also par for the course.  By that I mean, I got up, took Amos outside, walked on the treadmill, cooled down, showered, napped, fed Amos, fed myself, worked on a puzzle, napped again, struggled to concentrate the rest of the evening.  I did get to speak with Becky, which always brightens my day.


I fell asleep working on that and never got back to it.  I frankly do not remember what I was going to write.  But I melted down around 5:00 this morning again.  I just do not understand what is happening to me.

Right now, I am waiting on my GP.  Normally, she is approximately an hour behind.  That is because she takes her time with all of her patients, all of her patients being complex.  I do not mind waiting, although I wish I could just come at a later time.  In all my appointments, my appointment has been on time only once.  It was a miracle that day!

I am a bit discouraged today, not really hopeful at all.  That is kind of odd, since the duloxetine is clearly helping the baclofen work better.  For many patients, it helps either or both gabapentin and baclofen work better.  For me, the baclofen is more efficient.  I have not had a flare of occipital neuralgia since I went to 60 mg.  My lighter flares of pudendal neuralgia have almost disappeared as well.  Although the larger flares are still brutal.  And the spasticity in my legs has finally eased significantly after over two decades!  I can actually bend over and touch the floor!!  Another miracle.

So, in some way, things are better.
But my hands are not.
And the constant nausea is still plaguing me.

For a while now, I because nauseated after I eat.  Eating sometimes make the nausea better.  But then, afterwards, it can be rough.  And I still get the wild bouts of violent waves of nausea.  I would like for just one day to be free of nausea.  Just one day.

And the pre-syncope (near fainting) has been just awful in the evenings.  Of course, the past two nights were back to a more mild episode.  But before those ... whew ... I just struggle to get up at all.  I do not know why that has changed for me, except for the fact that dysautonomia is a mercurial condition.

Episodes.  That's what folk call fainting and near-fainting.  I actually do not like the word, but it seems to be practically industry-standard.  I think that the word is used because of the collection of symptoms/responses that your body has at such times.  But, to me, because of television, I think of the word "episode" as belonging in media, episodic media.

If you Google the word, this comes up as a definition:  an event or a group of events occurring as part of a larger sequence; an incident or period considered in isolation.  To me, neither of those fit for a faint or a near-faint.  So, the word nerd in me wonders how "episode" became the favored moniker.

Too, I dislike the word because I feel as if it diminishes the enormity of what is happening.  By that I mean, fainting and near-fainting might be commonplace in our world, but they are a terrific strain on the body, especially near-fainting.  Growing dizzy, shaky, tremulous, weak, nauseated, disorientated, and anxious overwhelms the mind and body. Once the near-fainting has eased, you are still weak and overwhelmed and, for me, a bit discombobulated.

I talk about how, after a migraine, I am a bit shell-shocked over the absence of pain.  It is hard to wrap my mind around the fact that the migraine has ended, that the colossal battle with my body is over.


I've spent the evening roasting myself before a fire.  My temperature at the GP's was 96.2.  Temperature dysregulation is not something that seems too much to handle, but it is a strain to never know how your body is going to respond to cold or heat or how your temperature will be on any given day.

The totally weird thing is that I have had waves of chills traveling up and down my body, with icy skin making the cold spell truly miserable.  And yet, at the same time, my face and ears have been burning all night.  I just brushed my teeth in order to start the fluoride tray treatment and was amazed at just how red my face and ears are.  They are on fire!  So, a small part of me is burning up whilst the rest of me is freezing!

It's nuts, living in this body of mine!

Friday, November 02, 2018


When I was in the MRI machine, I started getting cold.  My skin was turning icy.   I was growing miserable and asked for a blanket when there was a break in the scanning.  The MRI safety officer felt my arm, which was stuck to the side of the machine, and said that it was warm.  With chills traveling from head to toe, I tried to find the words to tell her to touch the skin on the top of my arm or my leg or any place else.  Instead, I merely said I was cold and asked for a blanket.  She insisted that I was in danger of overheating and refused the blanket.

I felt bullied.
And dismissed.
And cold.

When she started to pull me out of the machine, the safety officer kept commenting on my face.  I was flushing and she was marveling at just how red my skin was.  I was flushing.  My face was on fire, but I was so cold that it was difficult to concentrate on what she was saying.  I just wanted to get back to my clothes, which included a heavy sweater.

My face is on fire at the moment.
Right now, as I type.
It has been for hours.

For a couple of months, my ears have been flushing, not my face.  I was enjoying the fact that my face was more like the face I am used to seeing in the mirror, even if it is overly large.  However, for a while now, I am back to looking and feeling the freak, with a face others comment on in wonder.

Yesterday, I touched my cheek for some reason.  I do not touch myself much.  I do not like touch from others, knowing it will trigger me.  I do not like my own touch.  But when I touched my cheek, I was startled.  It doesn't even feel like skin.

My face, where it flushes the most, is rough, like sandpaper.  It is rough and tight and, usually, burning hot.  The heat is damaging my skin.  I knew that, because I have broken blood vessels on my face now, tiny dark red wiggly lines.  But now I also have skin that no amount of lotion will soften.

I cannot tell you why this has me so very distraught, but it does.  I've been trembling and despairing for hours.  I have been shaking and wracked with sobs that break out unexpectedly.  Tears are welling in my normally desert eyes.

More loss.
And still more.

I ache within my very being over all that I am losing and have already loss.  I feel so very isolated and alone with that loss, especially hearing that I am still this, that, or the other.  I am still smart and still capable and still ... and yet I am not.  I know that I am not.  I am living inside this body, this mind.  I know what I struggle to hide. I know what I cannot remember.  I know what confuses me.  I know how often I am lost.  I know.

Amos is snoring like a drunken sailor next to me.  He's rolled over and over until he's no longer curled up against me.  Instead, his feet are tucked behind the small of my back and I feel them move as he frolics in his dreams.

I wish he were awake and curled up in my lap.
I wish I were not alone.
I wish someone were holding my hand.

The sandpaper skin on my face is such a small thing in comparison to all the things breaking in my body.  And yet is it not.  I think that it represents the whole of what is happening to me.  A whole no one but me sees.  A whole I long for others to see.

And a loss that is devastating to me.