Thursday, December 20, 2018

Great wait...

Today is the Great Wait of 2018.

My timing belt is being changed out.  The manager said it would take approximately four hours.  Then, he said five.  I told him that four was a better number.  He said that the timing belt guy likes to go slow since he is taking apart an engine.

Well, darn it.  One cannot argue with that.  It is not like I am charged more for his carefulness.  SIGH.

So, I am sitting here in GoodYear, twiddling my thumbs.  And, right now, I am glare at my Highlander, since it is still sitting in the parking lot.  Twenty-three minutes into my appointment time and my car still hasn't been taken back.

The manager is so very lovely to me, so I cannot really complain.  But I am just not sure how I will survive this wait.

This is especially true because I had three night terrors one after another, a continuation of the dream.  I HATE it when my dreams do that, particularly with night terrors.  I get no rest and very little sleep, tossing and turning in the dream.

This dream was rather exhausting because I was trying to escape my captors.  So, I spent my seven hours of sleep time (yes, I stayed up too late for an early morning appointment) running and hiding and climbing and even swimming.  It was awful.

I loathe my brain.

I woke twice for fresh ice packs, and the severe flushing in my face was still taking place each time.  It is rather difficult to fall asleep when your face and ear and eye are on fire.  This time, it was the left side.  In fact, as I type right now, sitting here in public, half of my face and my eye and my ear are deep cherry red.

I feel like a freak when this happens.

Oh!  Look!!  Speak and it happens.  Seven minutes later, the Highlander is back with the mechanic!  Yay!

But ... oh! the wait I have.

One of the things that I like here at GoodYear is that the manger is whom I am comfortable with in being here.  It used to be a particular service man.  But he retired this summer.  I practically had a heart attack knowing that I no longer can work with him.  He was so very lovely.

You see, I first came here when I was weeping all the time.  All.  The.  Time.  He didn't bat an eyelash when I sobbed my way through my first appointment and the second and so on and so forth.  At some point, I realized that, in all the things that were happening as my life fell apart when I started remembering some of the abuse, I had stopped taking care of my beloved Highlander.

It was grossly overdue for service ... as in five years.  The good part was that for that past year, at that point, I was no longer driving it daily.  I average less than a thousand miles a year now.  Still, the Highlander was a mess.

There I was, sobbing my way through buying tires, when I had that realization.  He assured me that everything would be okay and made an appointment for the next week to do the manufacturer recommended service, as well as whatever they found that the vehicle needed.  Boy, when I drove home that day, it was like driving a new vehicle!

What I also like best about GoodYear is that they never try to up-sell me.  In fact, I have been waiting for the news that I need belts and hoses, since mine are the original ones.  My beloved Highlander is so very old, but they always thoroughly check the belts and hoses and will not replace them until they are actually needed.  I mean, if I insisted they would, but they would also try very hard to talk me out of it.  And no matter how many times I ask them about the belts and hoses, they always check them.

One time, a couple of years ago, the manger said he would have a second guy, since he was new to this place, look at them just for a second opinion.  That guy said they were just peachy.  Okay, not peachy, but you know what I mean.

So, when Jim retired, Jim whose name is the same as my father's, I melted down in the panic of how I was going to get my beloved Highlander serviced, since my vehicle anxiety is rather high.  August, the manager, stepped in and said that he would take care of me.

For my appointment this summer, my annual oil change, he came in to help me even though it was his day off.  He answers my 1,001 questions.  And he went through the entire service history since I started coming here and my vehicle booklet so that he could outline the things that were coming long-term.  I had known about the timing belt for a couple of years now.  He said that 15 years would be his red line if the vehicle was his.  I agreed.

You see, I just don't drive much.  So, it is difficult to look at mileage-related maintenance.  All the other maintenance can be visually checked.  But, with the timing belt, once you take an engine apart to check it, you might as well change it.

The timing belt should be changed at 90,000 on my Highlander.  I am just over 81,000 miles.  It would be another nine years before I get there.  But a 15-year-old timing belt is pushing it.

Eons ago, back in the dark ages, my mother's timing belt broke.  It severely damaged the engine. I may know rather little about vehicle maintenance, but I do know about the importance of the timing belt.

So, here we are.
And waiting.
And waiting.

It is now 10:50.  The mechanic has had my Highlander for 20 minutes.  I am weary and ready to go.  SIGH.  But my realtor is coming by to fetch me for lunch at noon.  That way, I will at least have a small break from the waiting and waiting and waiting.

The problem with all this waiting is that I have more time to think, given that I am not lulled in to languidness by being curled up with my beloved Fluffernutter.  Or streaming.  Or napping.  It is difficult to do much else but thinking whilst sitting at a car repair place for hours on end.  And I am not really in a position to face much thinking right now.

  • I am still struggling with what happened with the asthma attack.  
  • I am utterly and completely overwhelmed over the news about my lungs: 1) that we need to shift treatment expectations from getting better to not getting worse AND 2) that we are at the point where we have to weigh the dangers of treatment with the dangers of my symptoms.  
  • I am aghast at the thought that the shocking in my hands could be nerve compression in my neck needing surgery.  And I am not looking forward to the neurological testing that I am having in January.  And I am angry at not being able to have a cervical MRI since that is what is needed to determine what really is going on ... an MS lesion, a tumor, compression, or something else.  Right now, both the neurologist and the neurosurgeon have to work with one hand tied behind their backs. 
  • I am despairing over the report on my eyes and having yet another problem with them.
  • I am despairing over my teeth, especially the cost of them, but also the thought of losing them all so soon.  Each night, as I do the fluoride tray treatment, I wonder and worry and financially fret.  It is not that I am dreading the next x-rays at the end of February, it is that I have abject fear over them.  If all six troubled teeth need to be filled, I cannot see how I can do that.  How can I keep up with the rate of 10 teeth having issues over the course of a single year?
  • I am overwhelmed by how much Sjogren's is ravaging my body and making affording medical care even harder.  I dread doctor appointments, given that I have to explain that I only have so much money and I cannot do everything asked of me or take everything prescribed to me.  I do like that I now have a phrase to use (focus on things that will affect management of care), but I still have to explain and decline things.
  • I am overwhelmed at how easily triggered my PTSD can get these days, since things are being tossed and turned over in therapy.  I do not like my triggered self.  I am ashamed of her.
  • I struggle with the things I am realizing about myself related to sexual abuse, all the lies I have incorporated into my world view and core self and how much that has affected every relationship that I have.
  • I am despairing and terrified over the cognitive dysfunction that I am facing.  That I have messed up appointments four times in the past two months is devastating to me.  Struggling to find words.  The times I am faced with how much I do not remember.  Just the other day I learned that I have forgotten some very important information about my dear, dear friend Mary.  I do not know how she bears a friendship with someone who remembers so little about about her and about our friendship.  

I am grieving over the losses.
I am terrified over what is happening to me.
And I am weary beyond words.

So, really, waiting most of the day at a car repair place, even one as safe to me as GoodYear is, is the last thing that I want to do.

Tuesday, December 18, 2018


My dear friend Mary spoiled me for Christmas and, frankly, she warmed the cockles of my heart.  I am not much spoiled ever, and I am really, really struggling with having to count and re-count pennies every darn day.  There are so very many things that I want and even things that I need that are out of my reach or require careful planning and genuine sacrifice.

The part of me that doesn't believe I am worthy is wanting to ask her if I can send her a check.  The part of me that has, for example, deeply missed the glass frog straw ever since it broke, is jumping up and down for joy in the excitement and the gift of smiles and frog joy.  Frog joy and three other gifts. Four is my favorite number....

Plus, I have been struggling for months now over all the stuff that has been piled upon my plate, so being spoiled has been a bit of a balm to my weariness.

I am physically weary.
And mentally weary.
And emotionally weary.
And spiritually weary (of being terrified).

I can find no rest.

Even though I have been resting quite a bit since the lung wash, I am still so exhausted that I cannot fathom sitting at GoodYear for most of the day on Thursday.  I was out for an appointment today and didn't bother to dress for public.  Instead, I went out in men's pajama pants and a hoodie for the first time in months and months of trying to at least dress the part I was playing.  Tomorrow, I can sleep more, but I doubt it will make a dent upon my weariness.

Sjogren's fatigue is far worse than dysautonomia fatigue.  I would never have guessed that could be possible.  Put the two together and I doubt I will ever be rested again.  SIGH.

Emily replaced the heating pad that just died as a Christmas gift, for which I am exceedingly grateful.  She is also sending me stamps since I am out.  That, too, is a much welcome gift.  She knows how much it means to me to send out my bi-monthly note cards.  Although, with the cost of stamps increasing five cents in January, I believe my bi-monthly note cards might need to be transitioned to quarterly ones.

Celia, bless her heart, gifted me a subscription to recipes for the year.  I have not been cooking much for months and months.  I have not tried new recipes in eons.  And I fell away from making butters.  I know she didn't mean it this way, but I thought that it was much welcome chastisement to take care of myself in some fashion and cooking new things is a way of doing that. I do miss exploring new recipes.

I am just so very weary.

Becky's gifts are on their way.  My sister already gave me a generous gift to help with medical expenses.  And she send me my beloved calendar, though it lies unopened beneath the Christmas tree.  Becky's mother's gift is also sitting beneath my tree.

For decades, my mother used to give us all calendars for Christmas.  She stopped doing so and it broke my heart a bit.  But my sister stepped in to fill the void.  She does a wonderful job of selecting them.  And it warms the cockles of my heart that she makes the effort each year so that I can still have my calendar Christmas present.

The funny thing is that, toward the end, my mother would give my sister a Renior calendar and she would give me a Monet one.  My sister and I would promptly swap, for I love Renior and she adores Monet.

My sister knows I love botanicals, so she's been choosing those for me.  It is most exciting to turn the page to a new month to see what kind of botanical loveliness that I will get to savor all month.  She's also been giving me a two-pack calendar so that I can use the small one to keep track of medical stuff.  What kindness!

My step-mother, mother, and step-father will send money and my brother a gift certificate to Amazon, where I buy the supplements my doctors have me taking.  The money will go toward bills.  I very much dislike being so practical with those Christmas gifts.  But being spoiled this year is taking a bit of the sting out of that.

Monday, December 17, 2018

New pain...

I have a new neuralgia.  Fun times.

Glossopharyngeal Neuralgia has to do with the 9th cranial nerve and can cause flares in the back of the throat and tongue, tonsils, and middle ear.  My flares are happening at the back of my tongue on the sides where it is attached.  Sometimes it is both sides; sometimes it is just the left side.  The pain is as brutal as the Trigeminal Neuralgia flares, but the flares are also as short.

I simply cannot put into words the despair these flares have brought to my mind, body, and soul.  SIGH.

There are two medications that I can try, that I can add to my current combination of gabapentin, baclofen, and duloxetine.  However, both are Tier Three drugs.  That means another $45 a month.  I do not have that.  At all.

I also have started having esophageal spasms.  The first time, I was dead certain that I was having a heart attack.  I even hastily chowed down baby aspirin.  But when I got better, I was a bit perplexed.  The second time, I realized the pain felt like it does when I cannot swallow and food is stuck in my esophagus.  However, it was many, many times worse.  I tried swallowing and swallowing and swallowing and the pain subsided.  The third time, when the swallowing helped again, I was most certain that it was my esophagus.

Usually, when I diagnose something, I gleefully tell my GP.  She laughs, but as I have been right every time I dare to do so, she also does not mind my pronouncements.  This time, I merely described the pain and she diagnosed me.  I think I couldn't summon any glee because this is a terrible diagnosis.  You know, because she cannot do much for me.  Her main advice was to avoid drinking cold liquids.  I already do that because of my now crazily sensitive teeth.  Her only other suggestion was to try to increase my amlodipine.  Do you remember why that is not the best suggestion??

I take a beta blocker to help with syncope and to blunt the spikes in my blood pressure and heart rate when stressed.  Amlodipine is a calcium channel blocker.  It used to be that the two were not prescribed together.  That thinking has changed, but it does mean that my blood pressure can trend even lower than it already does.  She waited a month, but my pitiful begging moved her this month and I am starting a higher dose.  As is I just started a higher dose today, because I suddenly got chicken about starting and put it off for  a while.

With amlodipine, the longer I am on it, the more it builds in my system.  So, I will not know what this change will mean for me for a while.  Of course, I could keel over from dangerously low blood pressure on the morrow.  One never knows.  SIGH.

Another new pain I have is this constant needling pain in the top part of the inside of my right middle finger.  Specific, I know.  That is why the EMG will be on my right arm and not my left.  I'm getting more activity in my right hand than my left.  SIGH.

A final new neuropathy, but not pain per se, is vibration neuropathy.  Yes, it feels as if a cell phone set on silent is going off in my body.  Wherever the nerve is malfunctioning, that is where I feel the vibration.  It is wild.  It is weird.  And it is wearying.  Because it is nothing like the Glossopharyngeal Neuralgia, I feel as if I shouldn't complain.  But I am already over having to deal with the buzzing inside my body.  It makes sleeping difficult.  It makes conversing difficult.  It makes concentrating difficult.  SIGH.

The shocking in my hands is worsening.  My fingers jerk more.  My hands tremble.  I am having a harder time trying to control my hands, trying to use them.

I suppose I shall finish by noting that, since I started typing, the burning electrical neuropathy I face the most started firing off from my upper shoulder, down to the inside of my arm, through my elbow, and toward my inner wrist.  A pulsing agony that repeats every few minutes.  SIGH.

I am weary of pain.

Sunday, December 16, 2018


The procedure went well, but I had an asthma attack afterwards.


That was all that I have been able to write in the past few days, because I am just so darn weary.  But also because I have been dealing with that asthma attack, a blood sugar crash, syncope, and pre-syncope.  Plus, I've got a migraine starting and I should stop typing and go take my meds and sit in darkness and silence.  However, days and days are passing by without being remembered here.

What I am struggling with the most is that I found myself right back in that terrible place where I am begging for my emergency inhaler and medical staff are ignoring my pleas and telling me that I simply need to calm down.  The last time it happened, I stopped breathing.

I don't want to live this life of mine if I cannot escape that battle.

I know that cough variant asthma is not common, but it is not uncommon either.  Meaning, it is not rare.  And I was decompensating fast as far as my cough went.  Still, no one was listening to what I was actually gasping out in-between my coughs.

Even though I was coughing so hard that blood and clots from the procedure in my lungs had been forced up into my sinuses and was then dripping out my nose, still, I only needed to "calm down."

I wish to give the blow-by-blow, but I am not sure I could write it all out without finding myself back in that very dark place I have been trying to crawl my way out of since Thursday.  In short, the procedure room was very far away from the recovery room.  I started to cough outside of the procedure room.  My emergency inhaler was beneath the gurney I was on.  I repeatedly begged for my inhaler as I tried to explain what was happening, how cough variant asthma starts.  The only response I got for about the first ten minutes of my asthma attack was to "try to calm down."

I shall admit that my emergency inhaler was expired, when I finally got it.  Of course, the medical personnel did not believe me when I stated that.  I could tell by the lack of taste in my mouth.  I asked about the date on the canister.  You see, once you pierce the canister, it expires in 90 days.  It was three-months expired!  But even though it is my med and I was explaining, in between coughs, that I NEEDED albuterol and atravent, because the manufacturer's date was not expired, I just need to CALM DOWN.


What was really difficult to bear was a nurse explaining disbelief at how much the nebulizer helped my cough.  Yes, well, THAT'S WHAT MEDICINE DOES FOR ASTHMA ATTACKS.

I was not prepared for an asthma attack.  I have become too complacent about them, because I have not had to deal with really bad ones for years and years.  But I did.  And I was not prepared.

I also had not given a single moment's thought to how the terrible dryness in my throat would affect an asthma attack, where the key is to stop the coughing and keep it from starting back up.  I cough all the time from my dry throat now.  But I didn't have any of the things I use to stop that coughing, such as the dry mouth lubricant, the dry mouth lozenges, the numbing lozenges, and benzonatate (tessalon perles).  I also should have brought water for the car.

If I had known that a complication of the procedure for asthmatics is an asthma attack, I could have been more prepared.  But I did not.  Still, it is shameful to have not changed out my emergency inhaler for three months.  So, I do not forget that again, I added a calendar event for March 13th to swap out this one for a fresh one.  I find it so wasteful to throw away a nearly full inhaler, but in an emergency waste doesn't matter.

I need to start thinking about all the stuff I have at home to help with my various symptoms and consider which ones I need with me when I am out and about and when I am in medical settings.

I SWEAR that I am not going to be put to sleep again without having my emergency inhaler duct-taped to my gown.  I simply cannot depend on medical personnel to help in times of asthma attacks.

I've done very, very,  very little since Thursday, but I am still weary as weary can be.  I only nebulizer twice today and I am going to see what happens if I don't at all tomorrow.  I have an appointment on Tuesday and a car maintenance on Thursday (timing belt; minimum 4 hours).  Then, since my brother is coming, I want to get a few groceries this next weekend so I have some veggies and salad stuff on hand for us and I want to do a basic clean before he arrives.

I am already exhausted before any of those things have happened.

Recovering from anesthesia is harder on me, now.  Recovering from an asthma attack always has been.  Recovering from a massive blood sugar crash takes a day or so.  Fainting makes the rest of the day hard for me.  Pile all that up together and I'm not sure how long it will be until I feel as if I can manage myself once more.  Of course, having so many appointments in such a short period of time leading up to the lung wash didn't help either.


Have I mentioned that I am weary??

Thursday, December 13, 2018

Try this again...

Let me try this again...

I didn't really say what I wanted to say about being lost.  Not, mind you, that I am certain I can again. But before I try, I wanted to note that, when I went to my neurology appointment on Tuesday, I actually arrived at my rheumatologist's office.  When I learned of my error, I was crushed and ashamed and hastened over to the neurologist's office.  I was fortunate in that I went to the bank first and had left a large cushion when I was planning my leave time to ensure that I got to my appointment on time.  Had I been going straight there, the appointment would have been canceled for being late.

That is the fourth time in the past two months that I have messed up my appointments.  I was late to my GP appointment, and consequently missed it. I did the same to another one.  I showed up on the wrong day to my CT scan.   And now I had the wrong location.  SIGH.

I didn't tell the neurologist.
I forgot.

The thought I was trying to get across as part of being lost is being without purpose.  My dear friend Mary tells me that my purpose in life is being her friend.  Becky would agree.  Not to be rude to either one, but being a friend does not seem like much of a purpose.  Being purposeless, I feel as if I am aimlessly navigating each day.   When you are home all the time, Mondays are the same as Wednesdays.  Tuesdays the same as holidays.  Everything thing is the same.  And there is never any respite from it all.

It is agony not having a purpose.
Add it leaves me feeling lost.

Monday, December 10, 2018


I dreamt that I was in between places.  I often dream that.  I oft have dreams having to travel between Fort Wayne where I know that I have a house and places where I have tried to go back to graduate school.  Sometimes, I am working but not working because I know that I am on disability.  Sometimes, I am staying at Becky's grandparents cabin, although it is not in the mountains but on the water, a massive lake I believe.

Usually, I am staying in a dorm in school, but I will spend much of the dream trying to find my room.  When I am in my room, a large part of the dream is being alone in a room for multiple people.  When I was in graduate school, getting my master's, I stayed in a dorm.  My roommate would have sex whilst I was in the room.  When I protested about this, she moved out, so I was left alone.  I suppose that's the basis of the solitude.

When I am in school, all I am doing is failing classes.  I fail and fail and fail again, because I keep trying.  But I am too weary to get to most of my classes.  And my cognitive dysfunction keeps me from being able to complete my assignments.  Being in school is depressing and distressing, since I am lost much of the time.

But, in this dream, the storyline was new.  And it was one of those dreams where the story evolved and shifted.

I had been staying in a motel, where it was furnished with my own things.  It was a cheap motel, all that I could afford.  I am not sure why I left, but when I came back from wherever I was, I discovered that my room had been rented out again, because I had been gone longer than a month and had not paid my rent.  I was devastated.

I threw myself upon the mercy of the motel manager, begging her to understand my not remembering to pay.  I told her that she could just debit my bank account each month if only I could have another chance.

I am not sure why I was begging.  Perhaps because it was the cheapest place to stay.  I know that my rent was $320 a month.

She took pity on me and agreed to rent to me again, but she said she had someplace different in mind.  So, she took me out back and started walking across to this neighborhood across from the motel.  I found the neighborhood confusing and was puzzled as to where she was leading me.  It turns out that she owned an apartment in one of the buildings and was going to rent it to me.

When she opened the door, I stared in wonder.
It was a very Myrtle place.

The ceilings were massively high and trimmed with intricate crown moldings.  There were handmade glass windows that flooded the apartment with light.  The door and opening casings were all rich mahogany wood.  It was furnished with all antiques.  And off the bedroom was a wonderful old balcony with wrought iron chairs and a table.  I simply couldn't believe it could be a place for me to live and for the same amount.

But then, when I asked about moving out all the books and personal belongings still there, the woman turned rather hostile and said she was no longer certain that I was the person to live there.  It was wretched of me, highly offensive, to ask to remove the belongings.  Instead, I was to fit myself into whatever drawer space was left and to use whatever closet place deemed appropriate.  I groveled my way back into her good graces and sighed with relief once she had gone.

But fitting yourself into an apartment that is already full of possessions leaves one feeling rather insignificant.  And, being ill, not working leaves one feeling rather useless.  And living in a motel leaves one feeling rather lost.

In thinking about all the things that happened in the dream (too much and too distressing to write about), I realized just how lost that I have been feeling myself.  I am not sure if it is akin to the grief over all that I have lost and am losing in my life, with how Sjogren's and dysautonomia are wreaking havoc on my body.  But what I feel is not about loss.  It is being lost in this life.

I have no real place in this world.  My family is not really a family that has much to do with each other.  I am not working.  I do not have a circle of friends here in Fort Wayne.  And, as with what happened a little while ago, when the PTSD got really difficult for me and I disappeared from the world, my online friends did not reach out to me by phone or email or letter.  I was left alone with my upsettedness until I could make my way back to Facebook.

The holidays add much to feeling lost.  I dread the questions:  "What are you doing for Thanksgiving?"  "Do you have plans for Christmas?"  When you are home day in and day out, holidays and weekends have no meaning for you.  One day is the same as the next.  When I speak the truth, that I have no plans, that I am not going anywhere or doing anything, there is usually a push for more information, arising from a certainty that I would not merely be doing nothing.  Sometimes, I am tempted to say that I am going hiking in the Himalayas or some other tall tale.  But I know that that would eventually lead me back to the same place.

I am nothing.
I am nobody.
I have no place in this world.

Perhaps what I am trying to say is that I feel lost to humanity, in more ways than I can count.  One of those ways is belonging some place.

And I am oft lost in my mind.  I am confused.  I am not certain of what day it is or what I am supposed to be doing.  I have lost my anchor.  When I find it, the realization of where I was is difficult to bear.  And I feel lost in a different way.

If I could, I would rather be working.  I would rather be earning money, especially since money, or the lack thereof, rules my life these days.  But I would rather have a place to go Monday through Friday, to have set parameters that guide my daily existence.  But what few understand, there is absolutely no way that I could work.

I do not mean the fatigue and being ill and such.  The physical would preclude me from working, for certain.  However, I mean the mental fortitude that I just do not have.  And the cognition.

"Oh, but you are still so smart!" I hear nearly every darn time I try to talk about the cognitive dysfunction I have.   And it is simply not the truth.  I can no longer understand parts of my own dissertation!  I struggle to understand when I am listening to something, such as a sermon.  I cannot listen to audio books or even short stories on the radio.  Trying to follow them is like trying to collect berries in a basket made from chicken wire.  The berries fall through the holes, no matter how hard I try to hold onto them.  Tossing new berries into the basket mean that berries I picked earlier are lost, for lack of a better word.

I only re-read books now.  I say that, but I do not believe that folk are listening to me or think about what that means to a lifelong voracious reader.  I have a series on my Kindle that is currently twelve books.  When I get to the end, I start right back over with the first book.  I only re-read because it is simply too distressing for me to be reading and realizing that I am not comprehending anything about the new story.

It is easier to try new things with television.  However, I still look up recaps or synopses of what I am watching to ensure that I comprehend it.  So, nothing really is new to me, given that I read those recaps before ever trying something new.  So, mostly I re-watch, too.  For example, right now, I am rewatching "The Brokenwood Mysteries", since the new fifth season is now available to stream.  I just started season three.  The new season is the fifth season.

I do not look my age, nor do I look ill.  Unless I am searching for a word, I do not sound like someone who is cognitively compromised.  But I am.

I am middle aged.
I am ill.
And I have a brain that is failing.

I am also lost.

Sunday, December 09, 2018

More medical distress...

Five appointments in eight days was just too much for me.  It really was.  This is especially so because, these days, seeing specialists means getting distressing news.

I still have three more appointments next week, but one has changed.  I had to reschedule the cardiology appointment because, next Thursday, I am having a lung wash under anesthesia.  SIGH.

The thing is that my lungs have not gotten better after six months of treatment.  Some of my testing was slightly worse.  I had read the CT scan report and thought that it was okay, but it wasn't.  My pulmonologist said that we needed to shift our expectations for the treatment plan to not getting any worse.  You know ... shift from getting better to not getting worse.  That gutted me.

She had talked about having a lung biopsy, but that would require a three-day hospital stay.  Besides the cost of that, I don't have anyone to stay with Amos for three days.  There is no way that he can be boarded, sadly.  His anxiety is too high and his PTSD makes life so very hard for him.

A lung wash is a compromise.  Under anesthesia, saline will be injected into my lungs and then suctioned back out.  The saline is then analyzed for viruses and fungi.

You see, I cannot stay on prednisone long term.  With the lack of progress in getting better, I need to be transitioned to immunosuppressants.  If I have something brewing at the bottom of the lobes of my lungs, where the damage is seen on imaging, immunosuppressants will explode growth and put me in danger.  That is why she needed me to have a TB test, too.

Sjogren's Syndrome is attacking my body.  It is making my own immune system work against me.  So, immunosuppressants will turn down the effectiveness of my immune system.  The TB and malaria I have had in the past are still in my body.  So, taking immunosuppressants puts me at serious risk of battling those diseases again.

My pulmonologist talked about weighing the risks of my symptoms versus the risk of the medication to treat them.  This balancing act would be her main focus moving forward, depending on the outcome of the lung wash.  SIGH.

Distressing news Wednesday.
Then came Thursday.

The CT of my neck showed the likely reason for the constant shocking in my hands:  the nerve controlling my arms is being compressed in my neck.  So, the neurologist wants me to see a neurosurgeon.  I see the neurologist on Tuesday, but she wanted me to get scheduled as soon as possible.

The hope is that steroid injections would help the problem, but I could not afford regular injections.  At first, I thought at least one round would be diagnostic for me.  But my GP said that that would not necessarily be the case.  The injection could not be done in the right place and I still wouldn't know.  Or they might not help at all, but the compression could still be what is causing the constant shocking.  SIGH.

The appointment will cost $45, but I would like to go to have someone read the scans who better understands interventional options.  The surgeon chosen is recently trained in minimal approaches and microsurgery.  She was, apparently, a coup for Parkview to get.  And her husband, incidentally, works with my GP.  I plan to call for an appointment on Monday, as I asked the neurologist's nurse to wait to schedule anything with the two choices she gave me until I could talk with my GP.

I adore my GP.
She is amazing.
And she is very patient with my myriad complex conditions.

Still, it was an exhausting and distressing week for me.  And I have been trying to swallow that distressing news ever since.

Tuesday, December 04, 2018

Body parts...

One of the things that I have never understood is why men like to engage with little girls.

Something that you might not think about is how much that abuse suffered by the little girl can lead to her hating the parts of her body that were abused.  For me, a battle I have faced my entire life is with my breasts.  I mean, that area is not the only area of my body I loathe, but they have plagued me.

When I was little, I just couldn't understand why men liked them.  What they did to them confused me and made me feel filthy.  As I grew, my feelings intensified.  And it gutted me each time I endured abuse with them.

I finally have been losing weight.  It has been rather slow the first 11 months of torturing myself on the treadmill, but a medication I started in July has helped to kind of counteract the other medications causing weight gain or the metabolism issues or whatever has kept me so very rotund.

Last month, I started trying intermittent fasting.  Well, actually, I've tried it off and on for a while, having read some good research about intermittent fasting with diabetics, who struggle with weight loss.  For many reasons, I fit that group more than any other, even though I am not a diabetic.

There are two basic approaches:  1) fast certain days of the week and 2) fast certain hours in a day.  I tried the latter and didn't fair well.  I tried the former and didn't feel it was fitting me.  The problem with the fasting the past month, however, has been my increasing consumption of dessert.

Even before I started my no desert campaign, I decided to try the latter fasting once more.  I shifted around some of my medications and have been eating just 6 hours a day.  In four days without dessert, I have lost four pounds.  That is too fast, I believe, so I want to adjust what I am eating in the six hours (eat more), but I finally believe that I might get back to who I was anatomically before I started nerve pain medication.

Why start off this entry the way that I did if I am going to talk about weight?  Well, my body is changing.  Of late, I have noticed the biggest difference.  And that difference has been a trigger for me.  SIGH.

My abdomen was really large.  It still is, but very much less so.  I have lost 14 inches.  And, of late, my breasts have become more defined.  Beneath them, my abdomen is flat, instead of sticking out further than they do.

I haven't been able to understand why this change has been such trigger for me, buy my therapist explained it today.  For two years, I haven't had a shape that did anything to accentuate my body.  The curves I had made me look more like Santa or an elephant.

It took nearly the entire appointment today to get to the struggle.  I struggle to deal with my breasts and I struggle to talk about them.  Even the word breast is a trigger for me.  I hate  mine.  I hate  the memories attached to them.  I don't want them.

But my body now looks ... womanly ... again and I am not handling it well.

Understanding ... or rather having the thought that I haven't had to face that shape for a couple of years helps.  That make such perfect sense to me.  I have not had to think about my shape for a long while.  And during that time, I have been stirring my pot, so to speak, with therapy.  It is no wonder that I am struggling!

I cannot really explain how relieved I was to hear that explanation, to realize that, despite  my state, what I am thinking about this is normal.  Understandable.

I wish I could change my thoughts.  Some will, I hope, with therapy.  However, I do not believe that all of them will.  I do not enjoy the physicality of my body.  Pleasure is not pleasure to me.  It never has been.  And I want no part of it.

Nor do I want any part of my breasts.

When I was younger, my grandmother had a radical mastectomy.  I did not want her pain, but I envied her her body.  I was not scared at seeing her chest wall, at seeing the change from having a breast to not even having a layer of muscle.

I never spoke of my envy.  I did not believe anyone could ever understand, but my therapist did.  I mean, I just broached the subject.  I couldn't really talk about it.  But she got what I was trying to say. And I want to talk about it.

I do.

For I am frightened of the panic I feel whenever I catch a glance at my chest.  I see the defined curve that speaks of womanly parts and nausea rises to fill my being.  I am overcome with fear and desperation and the desire to escape.  But I cannot really escape my body.  I can.  And I oft think of that.  Only I am trying to shun such thoughts, to want to live.

Seeing those curves makes me want to die.

I do not want to relive the flashbacks I have of the abuse of my breasts.  I do not want to think about.  I do not want the reminder.  I could almost wish to gain back the 24 pounds that I have lost.  Almost.

It has been difficult and I desire prayer.  When such terrible fear and panic arises when I catch sight of my curves, I long to hear the Word, because I know it will comfort and calm me.  Only how do I admit to my friends or to my new pastor this problem that I am battling?

I am trapped in this body.
And I am alone with its horror to me.

Monday, December 03, 2018


[Written Sunday]

This is has been a terribly difficult day.  I've had five Pudendal Neuralgia flares!  This is the first time that I have had more than one in a day.  I believe all of them are from stool pressing on the nerve.

Yesterday, I started the day terribly ill, shaking, sweating, vomiting, and fainting.  At first, I thought it was because of the duloxetine.  It oft punishes me if I am late with taking it.  And I was late.  But, after a while, I realized it was a vasovagal response.  My enemy was stool, also, in that case.  Just a different nerve.

In both cases, all I can do is wait until the illness or the pain passes.

[Another flare started and I just couldn't write anymore.]

Today has been a day of failure, even though I am sure someone else might not see it that way.  My goal was to get my upgrade phone activated.  It is not.  Activated.  The only good news in this failure is that I can still use my original phone.

I am in a Catch-22 situation.  I ordered a phone.  Then I discovered I could get it cheaper through Best Buy, so I returned the first one (on the day I received it) and tried to order it through Best Buy.  Only the return had snafus in Sprint's system and my account was locked for four days.  Then, I was able to finish the order and was awaiting the new phone.  Sometime after that, someone put a debit on my account because my original phone was not returned.

The debit wasn't supposed to happen.
The debit is seemingly impossible to get off until the original phone is returned.
I need the original phone until the new one is activated.
The new one cannot be activated with a debit on my account.

The failure I haven't had yet is eating a dessert.  However, I must say that three days without dessert is a clear violation against my DNA.  I come from a long line of dessert eaters, a family dedicated to sweets with meals.  I am not ashamed of that.  I revel in one of the few commonalities I have with my family.  My genetic code has chocolate in it!

Still, discipline is good.
Even my chocolate-deprived cells of my body understand that.

I have let a third day go by without doing Amos' 30th foot treatment.  I need to keep them up every 10 days lest I have to go back to twice a week.  But I just get so weary thinking of torturing him for ten minutes.  Resisting his pitiful eyes until the treatment is done is near impossible.

So, I guess that is two failures and a success.

Saturday, December 01, 2018

Perhaps just...

So ...

[I'm sure you know where I am going with that.]

I am not sure that an entire month without dessert is really necessary.  Yes, I made it through today, even though, being one born and bred to dessert being a necessary part to any meal not breakfast, it was really, really, really tough on me.  But an entire month?

This isn't about sugar.  I don't need to watch my sugar.  Since I make most of my food from scratch, I know exactly how much sugar I am consuming.  My problem is that I totally lost my discipline with dessert.  Gone were the days where all I had was two mini Reese's peanut butter cups or a couple of cookies.  Instead of cutting, I dessert-ed away my overwhelming emotions.  I don't want to do either, but I most definitely do not want to eat through an entire bag of Smarties in a single week!

I was making such good progress with agonizingly slow, but steady weight loss, despite being on two drugs that cause weight gain, and that all went out of the window.  The fasting means that I can chow down on desserts and not gain weight, but chowing on desserts means not losing any weight.

I look in the mirror and I do not recognize the person I see.  I hate the redness in my face and ears.  But the massive weight gain just felled me.  I change my entire diet to deal with the gastroparesis and because I want to address the nerve pain I have to gain weight.  It's not fair!

I look in the mirror and I do not recognize the person I see.  I look in my head and I do not recognize the person I see.  I look at my life and I do not recognize the person I see.


So, perhaps just a week.  Perhaps just a week of no desserts and then see if I can get back to my usual sweet, but modest habits.  I admit that I am free with desserts when folk are visiting, being wicked and use them as an excuse to indulge.  But, alone, I am good, disciplined, reasonable.  Until October, when I fell off the deep end and unable to find a way back.  Despite my best efforts, desserts are not a way back.

Perhaps just a wee.
Or two.

Well, definitely I should be back to desserts by the 20th, because I am going to Penn Station with my realtor, who is picking me up for lunch since I will be camped out at Goodyear for at least half the day.  And, if you didn't know this already, Penn Station has the bestest chocolate chunk cookies in the known universe.  They are wildly wicked and vastly non-economical, but worth every calorie and penny and morsel.

Tonight, I thought to have a Dr Pepper, but then decided that would be cheating.  By that I mean, it would be trying to have a sweet.  I had a Granny Smith apple after I ate my dinner, my life-long love of an apple.  Fruit does not make up for a lack of a dessert.  Not when you have my heritage!

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.