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.

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.

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.

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.

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. Brené 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.

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.

You don't want to know...

AMOS HAS A BLOODY TAPEWORM FROM THE BLASTED FLEAS HE SOMEHOW PICKED UP TWO MONTHS AGO.

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.

Nuts...

Saturday:

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.


Monday:

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.


Evening:

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!

Sandpaper...

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.

Loss.
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.

New normal...

Alas, I am still here.  There was no death by MRI this day.

I learned that I am the first non-FDA approved device MRI at Parkview, in Fort Wayne, and in the region.  There was, apparently, a tremendous amount of ... "discussion" just to get to the point of where my head could be scanned.  I understand, more, about why this was such a battle.  No one in radiology in Fort Wayne wanted to do this.

I also learned that, somehow, my atrial lead is not approved even in Europe.  The only way I could have a scan other than my head is to replace the leads and the pacemaker.  And replacing leads is extremely dangerous and not something many cardiologists will do.  When leads go bad, they are left in the body and new ones are just added.  Space junk in your chest.

I came home bloody exhausted and have had a rough day.  The treadmill torture session was rather difficult, with three different parts of my body protesting at different times.  I should have stopped, but I know that if I don't stay committed to the course, my very lazy self will come up with 1,001 reasons why I should stop early or skip tomorrow and the next day and the next.  Getting started again is always hard.

I've napped three times and battled a terrible headache.  And this evening has been filled with fainting and near-fainting.

The MRI specialist said that it might be hard on me having my pacemaker turned off for a while.  I really cannot see why, but this has been a rough day.

Maybe it is more that the MRI battle is finally over.  By the 7th of November, I should know if it was worth it.  Or rather what information it yielded ... what direction the treatment to try and address the constant shocking in my hands will be.

A year of that now.
My new normal.

Three posts...

Three posts from Facebook about my day...

REJOICE WITH ME! The pastor from the church I have been attending visited me today and brought me the Lord's Supper since this past Wednesday was not a divine service and a tiny part of me has now started to worry the radiologist might be right about my croaking in the MRI machine. The Lord's Supper for me!!

Also, the cardiologist nurse practitioner who will be there during the scan is a member of the church. So, when he asked the church to pray for me this morning, she thought to come up to him afterwards and tell him that she will be there with me.

Oh! How the Lord works!!

~~~~

I think ... I think that I would like to be able to write "my" pastor instead of "the" pastor. For an ex-evangelical who has long had ... thoughts ... about church membership, I feel this odd longing to be a part of this church.

I learned today that the pastor and his wife both have struggled with chronic illness and the pastor came close to dying some years ago from sepsis, with a long, long journey coming back. So, my struggles and doubts and fears are understandable to him, save for the lack of confidence in salvation.

And my terrified little Fluffernutter climbed right up with the pastor right away and leaned into him for pets and rubs and much affection! Amos has NEVER sought that kind of touch affection from anyone.

Loveliness about the church:

• The pastor preaches much Jesus and sweet gospel.
• My compromised brain can follow his sermons.
• The atmosphere is like a church from the 1980s Bible Belt.
• The folk have been good about greeting this wallflower.
• The elders, told about my PTSD, have looked out for me.
• There is a nighttime service that is liturgical.
• The church is really big on prayer.
• The church is committed to community outreach, including a café, exercise classes, a preschool, a elementary/junior high school (jointly run with a few other churches), a food pantry, and a summertime combo of a farmer's market and food trucks in the parking lot once a week.
• I can park right next to the ramp that leads to the narthex door and be in a pew with little walking.
• There is a water feature at that door.
• The church is only 1.4 miles from my house.

~~~~

Tonight, I tore, vomited, and fainted trying to go to the bathroom. It is oft hard to want to live this life. When I told the pastor of that particular struggle he said that that was understandable living with chronic illness and the struggles I mentioned in brief. It was the first time in a decade that I felt like there might be a place for me in a body of Christ. Tonight, I worked on remembering the pastor's acceptance and compassion as I lay on the floor instead of thinking how much I want to die at times.

He also sang my favorite hymn to me, "Lord Jesus, Think on Me." I cannot remember lyrics, but I tried to remember how comforting it was to hear that prayer sung. Were it possible, I'd have those all five verses tattooed on my forearm.

I swear Synesius of Cyrene wrote this for me, even if he didn't know my birth was to come some 1600 years or so later. The Holy Spirit did, right?

Lord Jesus, think on me
And purge away my sin;
From worldly passion 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.

Weary...

I've been thinking about the fact that, on Monday, I have to be on two different monitors and there will be a pacemaker rep, a cardiologist, a cardiologist nurse practitioner, and an emergency response team there whilst they do the MRI.  I mean, the radiologist genuinely believes my life is in danger, that I will die if I go through with this.

A part of me is worried that there might be something to all the hoopla.  And yet I know that my pacemaker has been used for years in Europe safely.  But.  But there is this part of me that thinks about my medical luck and I grow concerned.  Of all the things that could happen, the leads heating up and burning my heart muscle tissue seems likely.  After all, I got one of those wretched CSF headaches after the spinal tap and I still have tinnitus in my right ear from the headache.  SIGH.

Will I be alive on Tuesday??

I thought I would write about something that has been newly distressing:  my teeth.  Yes, I know.  I have written about them before.  What's new?  Pain.

SIGH.

My teeth have become incredibly sensitive.  I finally understand why my dear friend Becky does not want ice in her water.  Even water out of the refrigerator filter hurts.  I am surprised just how painful teeth sensitivity can be.

I am also have pain in my jaw and ... well ... would you say roots?  Or is that just jaw pain shooting up in my teeth?  Whatever it is, it hurts!

Sometimes, if I push on the area between the bottom of my teeth and my jaw, where the roots are, the pain gets a little better.  But mostly it just hurts!

It is possible to have neuropathic pain in your jaw and teeth, both of an idiopathic nature (without reason) or another iteration of the Trigeminal Neuralgia that plagues my body.  Those flares have also started happening in my tongue, which is new.  So, perhaps.

What worries me is that this is simply another iteration of Sjögren's ravaging my teeth.  I worry that when I have my next x-rays at the end of February, they will be full of black teeth that have gone straight from needing fillings to needing root canals.  On. Every. Tooth.

The only part that helps my worry, my concern, my fear is that the pain is not always in the same location.  It has happened in many spots. For example, last night it was primarily on the left front.  Right now, it is flaring on the right side, in the front on the bottom and in the center on the top.  In fact, right this very, very second, the molar on the bottom right is KILLING ME.  The worst pain yet.  

I am weary of pain, really, really weary.  

No going back...

I was neither triggered nor filled with shame when I left my appointment yesterday.  Nor did I cut.  Christ be praised! 

However.  However, I did learn, the hard way, that Sjögren's is ravaging another part of my body.  My flesh was torn with the sonogram.  And the exam was difficult.  Being single, I do not use my "lady parts," as my doctor said.  And I am middle-aged.  But I have a disease that ravages tissue that has moisture, amongst other things.  It was sobering to learn how severely another part of my body has been affected by Sjögren's.

The appointment, therefore, was truly bittersweet.
Victory mixed with defeat.

Today, though, was mostly more defeat.

I have an appointment for the MRI again.  Not, mind you, that I actually believe it will happen.  Not now.  Not after everything that has happened.

I received a voicemail whilst I was showering after the treadmill torture.  It was from the cardiology nurse who hung up on me, for the second time, a couple of weeks ago whilst I was at my GP appointment.  She said that I needed to check MyChart for information that I needed to agree to as a final element to getting the appointment.  She said to respond either by message or by phone.

I checked MyChart.  There was no message.  So, I called.  And called.  And called.  I did so because I kept getting dumped into voice mail.  When I did reach a nurse, she started to tell me what I needed to know and part of it was that the appointment had been moved back for a second time and was now to be at 9:00.

I just lost it.
Melted down to the nth degree.

All along, no one has consulted me about what I needed or wanted.  I have not been included in the processed of determining my own health care.  In fact, just this very second, it has dawned on me that all the processing has been about covering asses ... Biotronik's and Parkview's (or rather the MRI department).

The missing element was written documentation that I had been appraised of the risks and agreed to them.  I had and have.  But if there wasn't documentation, the MRI department was not going to give me an appointment.

First, my pacemaker was not approved.
Second, a neurologist to sign off on the scan.
Third, a spinal tap.
Fourth, documentation of the cardiologist's approval of the MRI.
Fifth, a peer-to-peer call between cardiology and radiology.
Sixth, my leads were not approved.
Seventh, documentation that I accepted the risks.

Seven objections (that I know of).  Three canceled appointments.  This has been more about saying, "No." than helping me as a patient.

The last thing that that cardiology nurse wrote to me in the messaging system was that she didn't think that I would get an MRI.  I wanted to just scream when I read that.  Scream and weep and wail. Did the cardiologist instruct you to write that?  I cannot see him sabotaging hopes of getting the MRI when he was the one who kept telling me that it was going to happen.  And the messaging system is there to communicate with doctors, not with nurses who hang up on you and are defeatist about your prognosis.

I melted down in such a profound way that I had real tears rolling down my face.  Water welling up from the dessert that is my body.  I ended up bewailing my misery to that nurse, including the hang-ups and the poor communication with nurses through MyChart.

I also melted down when I tried to leave a voice mail for the patient advocate.
I am deeply embarrassed.

It is not that I need to apologize.  At this point, I am not even sure that I want to apologize.  I just want to know if I have jeopardized my status as a patient of the cardiologist.  I did want to say something, but what could I say?

I just felt as if something deep inside broke and there is no going back ... for me.
That damn MRI.

Popsicle...

Somehow I've become a human popsicle.  I mean, as the house warms, I can tell you when it is 70 degrees, 71, 72.  My body is so very sensitive to heat and my symptoms begin to worsen the warmer it gets.  I've know that for a while, for years actually.  Now, though, I feel I have become a human popsicle. I might melt when it is warmer, but I also freeze when it is cooler.  Even the slightest bit cooler!

I think that I basically can live comfortably between 65 and 68 degrees.  Start increasing the temperature and my body responds.  Start lowering the temperature and my body responds.  I faint when I grow too warm, at times, so I would think that that is the greater misery.  However, I am feeling these days that being cold is worse.

It staggers me just how cold my skin can get.  I have a long sleeve shirt and a cable knit sweater on, but I can still feel the cold of my skin on the outside of my sweater!  The waves upon waves upon waves of chills is pure misery.

The best I can do, later, is warm the house to 60.  At least that is what I could afford last winter.  With all the dental expenses, I will have to see what this winter will hold.  But 60 is like 10 to me.  At least, that's what comes to mind.  Right now, it is 59 and I think that you could freeze food on my skin.

You know, I grew up in Texas, where the summers are blistering hot.  You can fry and egg on a sidewalk or bake cookies on the dashboard of your car.  Those images come to mind when my face is flushing ... or, these days, my right ear.  But the inverse also plays across my mind as I try to find a way to warm my skin.  In case you were wondering, friction doesn't help.

I own two heating pads, one for upstairs and one downstairs.  Actually, I own three, but the third is a neck-and-shoulders one for my post-migraine protocol.  I wish I could have heating pad boots and heating pad gloves and heating pad shirts and heating pad pants.  As it is, I concentrate on keeping my core warm and dream of days when winter has passed.

Of course, during summer, I long for winter to come.
Or at least I used to do so.

I wish I were a poet, or at least a lyrical writer, so that I could weave a tale of my chilly wretchedness in such as way as to leave frost on your breath.  Alas, I am not.

For now, I will say that I spent much of this evening battling the air across my skin, especially the air creeping up the sleeves of my sweater and the folds of the blanket I have across my lap.  Air is my enemy ... except the air that I long for to more easily enter my lungs.  Or my alveoli or whatever it is that is not functioning in said lungs.  SIGH.

Iamanauseatedpopsicle.
How long can a name change name be??

Sleep the sleep...

At the risk of doing too much this evening, I just put two bananas in a bowl to thaw for the baked oatmeal.  I still have some time to go on the pulled pork, so I thought I would knock them out.  I have some time to go because I spent three hours this evening zonked out on the sofa and only started cooking at 9:45 PM.  SIGH.

I could have waited on the cooking, but I dislike having a crowded refrigerator and the two meats were thawing on plates in there.  Well, were thawed on plates in there.  Now, I have a bowl of chicken marinading in Thai honey peanut sauce.  Mmmmmm!

Gosh, it's been ages since I made that dish.  Originally, my plan was to make some more lemon chicken for gyros, but I discovered that I still had four jars of lemon chicken in the basement freezer and that Thai honey chicken has been on my mind.  Well, all things peanut butter have been on my mind.

Do you like carrots and peanut butter?
How about bananas and peanut butter?

Someone said to me the other day that I have too much food in my house ... that I didn't need to cook.  I get really, really, really frustrated with comments like that because it tells me that the person does not understand my life ... has not really been listening to me.

I cannot cook on a regular basis.  I can barely heat up food for myself.  I drag my exhausted, wretchedly miserable self through most days, trying to take care of things that a homeowner needs to tend to on a regular basis.  For example, today I pruned the rose bushes for the winter.  And I cut Amos' nails.  Both of those are difficult tasks, especially with a sprained wrist.  Doing one or two tasks, along with the treadmill torture, is a rather arduous day for me.  Plus, there is the need for napping just to get through the waking hours.

I don't want just five or six options in my freezer.  I want 10 or 12 (or more).  Would you want to eat the same five or six meals every week?  I also cannot cook 10 or 12 batches of food all at once, so I keep an eye on what is getting low, and cook up some tastiness once my mason jar drawer begins to fill up.  I have not cooked in so long, the mason jar drawer was overflowing.  After tonight, though, it is practically empty.

Yes, I have essential back-ups in my basement so that I can fetch what I need from there instead of racing out to the store.  Going shopping has to be planned for and worked up to, not popping out at the spur of the moment.  And, frankly, I don't care for any opinions on what I consider essential in my larder verses what you might.

I also have multiples of things that I have purchased in bulk to save money.  For example, on Walmart.com, you can order black beans, kidney beans, and pinto beans in four packs and save money on individual cans.  Pennies matter.  So, if multiples or a good sale comes up on what are staples in my larder, I will buy those.

So, yes, I do have a significant amount of food in my house, between my refrigerators, freezers, cabinets, and basement shelves.  But I do not have too much food.  I have what is right for me to get through life where preparing meals every day is not an option and where money is scarce and insufficient to my needs.

SIGH.

Why did I go ahead and cook, having already done two tasks today?  Both recipes are easy peasy.  The pulled pork takes about 5 minutes to put together in the pot and then 20 minutes to pull apart and divide into mason jars and then wash up the dishes.  Mostly it is a lot of waiting around and practically dying from the fragrant aroma wafting from the kitchen.  The Thai honey chicken means throwing the marinade ingredients into a bowl, cutting up the chicken, marinating it for at least an hour, and cooking it for about 8 minutes.  Neither recipe is time consuming or energy-draining.

Making baked oatmeal does take more labor, but it is not difficult labor.  I get out a jar of blueberries and two bananas from the freezer.  I put the bananas in the bowl and let both thaw.  Then, I mix up the ingredients and let the oats soak whilst the oven is pre-heating and I put the liners in the muffin tins.  They cook for 30 minutes, so I can get the dishes all cleaned up whilst they are cooking.  I then let them cool before putting them in the containers for the freezer.

Since I make the recipe every 18 days, you would think that I have it memorized.  But my cheese-hole brain has not let that happen.  I know all of the ingredients now, and have the dry goods waiting on the counter at the moment.  When the bananas are thawed, I will get out the pure maple syrup, milk, eggs, and Greek yogurt.  Gosh, just typing all that makes me want to go gobble up the baked oatmeal muffin thawing in the refrigerator for tomorrow morning.  I just adore baked oatmeal!!

My plan is to get the oatmeal ready for the oven and then cook the chicken whilst the oatmeal is baking.  I should have just enough time to cook it, put it up in mason jars, and then wash the dishes from the oatmeal and the chicken (the bowl, spatula, and pan).  Then I can rest a while more whilst the pork continues to cook.

Hopefully, tonight, I shall sleep the sleep of peace that comes from productivity, a full larder, and plenty of snuggling with a rather affectionate Fluffernutter.

Productivity...

I sprained my wrist in bed last night, for the second time.  It hurts more and is more swollen this time round.  I cannot figure out why adjusting my bedcovers can be so harmful.  I suppose that this should go on my list for my next GP appointment.  And, maybe, I should invest in a wrist brace.  I'm using my trusty ace bandage at the moment.

Today, I was able to make lentils with sausage and chipotle chicken chili (heavens forbid that I ever run out of the latter).  Tomorrow, my plan is to make honey Thai chicken and spicy Dr Pepper pulled pork.  Tuesday, I will make another batch of baked oatmeal muffins.  That should catch me up a bit where my larder is concerned.  I plan to make some more black-eyed peas once I have a few more mason jars empty.  And ... and then I, when I can muscle up the fortitude, I'd like to try a new recipe.  It's been far too long since I last dared to do so.

I was thinking about what I wrote yesterday.  As much as I want to be me when I have visitors, I know that I push and push and push because serving others, providing them a bit of respite, is in my blood.  Not being the host would be nigh until impossible.

Plus ... well ... I don't know how to not pretend that I am well ... or at least better than I am.  I fundamentally do not believe that ill Myrtle is worthy of care or attention or company ... or friendship.  SIGH.  I just loathe my brain at times.

I will note that I finally have visual rest back in my living room after that hasty plant migration.  By that I mean that I finally dealt with the two overgrown giant spotted begonias.  The one in the larger pot I cut back, fertilized, watered, and moved up to the solarium.  The one in the smaller pot was just too large.  Rather than re-pot it, since I do not have another large pot and am not inclined to buy one, I cut all the stalks for rooting and then moved the pot out to the garage.  I usually am not a plant murderer, but really this is more like giving it another second life.  Plus, I have rooted more than a dozen plants from the original begonia that I was given.

I put all the cuttings in a vase.  I think I will put them up in the solarium.  For now, I have the vase sitting on the bistro table in the kitchen.

The solarium.  I really, really like how the room looks with the table/writing desk and the rocking chair across the room.  The new arrangement makes the room look less crowded with all the plants wintering up in there.  I find it more visually restful.  And inviting.

Going back to the ides of new recipes.  My sister mentioned adobo seasoning when I was talking to her.  I have not heard of that, but I use chipotle peppers in adobo sauce in two of my favorite recipes. I asked her where she got it and went Googling for it.  But, along the way, I saw a recipe for the seasoning.  Have I mentioned that I miss my dear friend's spice shop?

I think I might like to make the seasoning.  There are several different variants, but I found one that I think looks good.  If it is, in fact, tasty, I was thinking that I could send some to my dear friends.  I do like sharing tastiness.

On the recipe that interests me, one of the ingredients is chipotle chili powder.  I have chipotle chili pepper, but I could think of several ideas for the powder.  I think it would make good seasoning by itself.

I wonder ... could I use it in a compound butter?

Less is more...

I was thinking about last night, about feeling as if I hadn't done enough if I was going to write about my day.  And it got me to thinking about how hard I work whenever I have visitors.  Now, mind you, I want to be a good hosts to my guests.  I am from the South, after all.

However, there is this part of me that very, very, very much wants to be me when I have visitors.  I want to be the one who is so exhausted that she does little each day.  I want it to be okay to not cook or clean or go out and about.  I want it to be okay to sleep as much as I need.  I want it to be okay to not hide how horrible my night was.  I want it to be okay to not pretend that I am better than I am.  I want my wretched misery to be accepted, even welcomed.

I wanted to write this more eloquently, but I am weary tonight.  I am weary in spirit, thinking about the MRI shenanigans, the battle that has been for me.  I am weary in spirit, thinking about being triggered for so long and realizing what I believe about myself.  I am weary in spirit, thinking about how my mother hung up on me, again, when I tried to talk about needing financial help.  It guts me that my parents have given tens of thousands of dollars to my sister for my nephew's schooling and refuse to help me, the one who doesn't have a job, who is on a limited income, and whose medical and dental expenses (from illness) are devastatingly overwhelming.  I feel so very worthless.  And when she hangs up on me, I feel like dirt.

But I do wish I could just be me, the ill me, when I have visitors.  And I wish that I would have a visitor who longs to cook with me as much as I long to cook with another person (or at least mostly as much as I do).  SIGH.

On a totally unrelated note, I will say that Amos has go NUTSO over playing fetch.  After seven and a half years of living with me, Amos has decided that he likes playing fetch.  In fact, he's even learned to share the bone or ball with me so that I can throw it.  For hours.  And hours.

I am glad that he is getting more exercise and that we can play together, but he's also exhausting me.  If I am not careful, he will sneak a bone or ball up to bed at night and in the morning after breakfast to have some play time before sleep.  He wants play time before and after the treadmill.  Before and after our nap.  Before and after dinner.  And all evening long.

I love that he's so happy.
And enthusiastic.
Perhaps, though, a little less enthusiasm could still be good?

Do you think it is possible to teach a puppy dog that less is more?

A year...

One year ago today, I awoke to shocking in both my hands.  It feels as if I am touching a live wire.  Again and again and again.  My fingers jerk.  And now, sometimes, the sensation shoots up my forearms and they jerk, too.

A year.
An entire year.
24/7.

Yesterday, I went ahead and opened a case with the patient advocate's office at Parkview with having my MRI appointment canceled for the third time.  I honestly cannot believe that, now, they are saying my leads are too dangerous to have in the machine.  That's just balderdash!

The research that led, in part, to the Centers for Medicare and Medicaid Services (CMS) to change its stance on coverage for MRIs for those with implantable devices shows very clearly that, with the proper protocol, it is safe to have someone with an implantable device in the machine.  Even if I had a regular pacemaker.  But I have one DESIGNED to go into MRI machines.  So, to me, eleven months of arguing over this is DRIVING ME NUTS.

However, I also feel the fight has left me.  It was all I could do to make the call.  I did, though, because I know my cardiologist's staff are breathing their heads against a brick wall that shouldn't be there.  This might help them.

Maybe.
Probably not.
You know my luck.

So, well, I was thinking as I was typing above, that I didn't have much to show for the day.  Therefore, I determined to make some bacon bits and a batch of lentils.  Only, when I started cooking, I started sweating and shaking.  I kept thinking that it was far too early for such and was a bit grumpy, flinging my supplies about the kitchen.  Then, I realized the problem.  I was having a massive blood sugar crash.

I don't know how it is for others, but I get to this point where getting food into my body becomes a primal, visceral need and I turn into a cavewoman, crouched in front of the refrigerator, shoving food into my mouth hand over fist. When I get this way, I oft end up eating too much.  I try to be restrained, knowing it takes time for the glucose and the food to bring my sugar back up.  Usually, I fail anyway.

My plans for extra productivity went out the window, though I did make the bacon bits.  I oft use them for when I need extra sodium because my blood pressure is low.  But I was not able to do anything else.

Only ... only I had already ordered my meds, emptied the dishwasher, stripped the bed and remade it, showered, and washed, dried, and folded a load of laundry.  That is a lot of labor for me.  Too much, at times, really.  Why can't that be okay?  Why do I feel guilty for being ill?  For not being productive each and every day?

SIGH.

Surprised...

I learned something new in Church last night.

The sermon was on the rich young ruler, the telling in Mark 10:17-22.

As He was setting out on a journey, a man ran up to Him and knelt before Him, and asked Him, “Good Teacher, what shall I do to inherit eternal life?”  And Jesus said to him, “Why do you call Me good? No one is good except God alone.  You know the commandments, ‘Do not murder, Do not commit adultery, Do not steal, Do not bear false witness, Do not defraud, Honor your father and mother.’” And he said to Him, “Teacher, I have kept all these things from my youth up.” Looking at him, Jesus felt a love for him and said to him, “One thing you lack: go and sell all you possess and give to the poor, and you will have treasure in heaven; and come, follow Me.” But at these words he was saddened, and he went away grieving, for he was one who owned much property.

The pastor was gone again this week, with his wife having surgery on the morrow, so the sermon was given by a seminary student.  He was one of those who preaches speaking with exaggerated dynamics, something I do not particularly care for in church (or anywhere).  The microphone made it worse, and my ears kept hurting at times.  So, at first, I was not the most attentive listener.  I just wanted him to finish!

For a short while, I thought about going to stand at the back of the church or even in the narthex, but I finally decided to grit my teeth and bear the discomfort in my ears.  I doubled my efforts in concentration and worked really hard to follow his message.  Where he went was not where I thought he would go.

I would wend my way there the way he did, but I will simply say that I was surprised.  This wasn't a story about keeping the Law or a story about tithing or giving away your possessions or being wealthy.  It was a story about Jesus.

Jesus wasn't saying to keep the Law, nor was He condemning wealth or promulgating charity work.  Read the passage and look at where He ends.  What do you have to do to inherit the kingdom of God?     Follow Christ.  Be a Christian.

The seminary student mentioned that some biblical scholars believe the rich young ruler was Mark.  One reason for this is the detail included here that is missing from the other two instances of this story:  that Jesus loved him.

But that detail wasn't just for Mark.  It is for all of us.  Jesus loved Mark just as He loved us all and died for us on the cross so that we could inherit the kingdom of God.  We don't do anything for that inheritance.  The very nature of inheritance is a gift.  Receive it.  Just follow Christ.

His sermon fundamentally changed the way I look at and feel about the rich young ruler.  For that, I am grateful.  Of course, I am also grateful for the Lord's Supper once more.

Canceled...

When I was finishing my pacemaker clinic appointment, I glanced over my patient summary.  On it, I noticed the MRI appointment was missing from the list of upcoming appointments.  Yes, it turns out the MRI department canceled the appointment.  For the third time.  Without telling me.

I ate a bowl of Blue Bell.
And another.
And another.

I just cannot believe I am here AGAIN.  What doesn't make sense to me is that the reason given, eventually, is that my leads are not approved and it is their "policy" not to allow MRIs in that case.  But back in December 2017, when my first appointment was canceled, I was told that my leads were approved, but not my device.  So, what happened?  Was that the truth or is now the truth?

After working with the cardiologist for so long, why not contact the office to say there was another problem?  What kind of person, much less department, just cancels an MRI and does not tell the patient?  Why treat a patient the way that I have been treated for nearly eleven months now?

SIGH.