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!