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.