Friday, April 19, 2019

Sustenance...


My brother has become a minimalist.  It is something of an irritant for some members of our family.  It is also not quite understood.  I make no claim to truly understand, as we have never been very close, but I do understand, intimately, his need for and response to visual rest.  Minimalism creates the ultimate visual rest in the home.

I sometimes joke that I am waiting to hear that my brother has sold himself.  No!  Not that way!!  By this I mean, he has sold ever so much of his possessions, first downsizing and then minimalizing his home.  He desires empty walls, empty surfaces, and sparely furnished rooms. He could, quite happily, live in a spare room for the rest of his life ... if that room were isolated from the rest of the world.  I do not believe he would enjoy a tiny home, but he would be the perfect candidate for thriving in the space.  Maybe one with vaulted ceilings, space around the property, and a short walk from the ocean.

In his journey, he encountered Marie Kondo and her philosophy of Tidying Up, a combination of downsizing and organizing to free one from home management so one can enjoy a richer, more full life.  I confess that I tuned him out the first few times that he talked about her.  But then I found her series "Tidying Up" on Netflix and watched it.

I admit that I started and stopped the first two episodes several times, because I found some of Kondo's processes a tad ... out there.  However, as I eventually plowed through the series, the repetition of the show's format helped me better appreciate the scope of what she has to offer.

Take the giving of thanks.  Kondo teaches folk to give thanks to the articles of clothing, household items, and other possessions that are being donated or discarded.  Thanking a shirt?  That's just plain silly, I thought.  But then I learned a significant reason behind teaching homeowners to do such:  it helps them deal with the guilt that can arise in donating/discarding things.  Ah!  How smart! I thought, having watched many episodes of A&E's "Hoarders" in years past.

In thinking more deeply upon this concept, I realized that the giving of thanks is rather important in downsizing/discarding!  I mean, you don't have to give thanks to the inanimate when the Author of the gift of those good things you have been using is animate:  God!  I had already been working on giving thanks, audibly, when I realized I had received something good, be it tangible or intangible.  This was just another level of being thankful.

Thinking such thoughts and watching episode after episode, I started thinking, rather deeply, about the Lord's Prayer and what "daily bread" means.  I came to understand it to be mean much more than bread or rather food!  [Go ahead and laugh at me, if you will over such simplicity of thought.]  I began to see daily bread as all that we are given to live this life.  My pausing to give verbal thanks grew in frequency as pondered the concept as I went throughout my days.

Well, recently, I ended up talking about it with a doctor of mine.  And I came smack up against my lack of word knowledge for all my word nerdhood.  You see, as I was talking, my doctor said, "daily bread means sustenance."  No!  I wanted to shout.  That's not what I mean at all.  It is ever so much more.  Instead of shouting, I tried to explain, but my words faltered and confusion crossed her face even as she was trying to encourage me to keep trying.  I covered my disappointment by moving on to a different facet of learning from Kondo's show:  that of joy.

Once home, I tried to write about daily bread in one of my many abandoned blog posts and got nowhere.  It was not until a week or so later that I thought to look up the word "sustenance."  Lo and behold, my doctor was right!  Sustenance means the maintaining of someone or something in life or existence.  Yep!  That is exactly what I was trying to say.  After chasing down the definition of words for several days, trying to figure out where I went wrong, I finally hit upon the word I thought that she was saying:  subsistence.

Subsistence is a minimum level of existence.  That's the difference ... the development ... in my understanding of the Lord's Prayer watching Kondo's show brought about.  I had always thought that, when praying, we were asking for a minimum level of existence to just remain alive in this world.  However, I now believe that the daily bread God provides for us is sustenance level, not substance level.

It isn't just a roof over my head, although sometimes that is the case.  It is this roof at this time in my life.  I needed a higher roof ... and a more spacious roof.  I needed such to be able to move past being triggered 24/7 with my PTSD.  I could talk more about why I believe that my Good Shepherd provided this house for me in how it is helping me survive mentally, as well as physically, but I am shy about sharing such thoughts.  I wonder and worry that they might be veering into the scope of being sacrilegious (or whatever word is the right word there because I am not certain sacrilegious is the right one) and I do not want that.

But I do know that God does not desire for us a minimum level of existence.  I know this because He did not create a minimum level of existence when He created the world.  I always, always marvel that some of the most beautiful colors in all of creation are in the fish inhabiting the ocean depths man does not see.  I marvel at the varied hues of green in this world, the varied hues of all colors in creation.  I marvel at the beauty of flowers, but also the beauty of leaves.  I am, after all, a sucker for any and all variegated leaves in creation. But it is not just the colors of leaves that causes my wonder.  The shape and texture and structure of them catches my eye and my praise.

ARGH!  I just know that I am fumbling and bumbling my way through what I am trying to say.  Simply put, there is such astounding beauty and almost ineffable variety in creation that there is no way that anyone could describe this world as minimalistic.  It is a world overflowing with ineffable riches.

My daily bread includes medical care.  God has provided me, here in Fort Wayne, the best medical care I have experienced in my entire life at a time when medical care is a great need.  I have doctors who genuinely care about me.  I have doctors who are knowledgable about my conditions that are generally unfamiliar to those in the medical field.  And I have doctors who both understand and are willing to work with my limited means and ability to afford such care.

If nothing else communications the expansion of my understanding, I know know that the daily bread God has provided is a therapist who sees and hears me, who is knowledgable about both chronic illness and sexual abuse, and who does not charge me the $40 co-pay I owe for each visit.  Having one of those would be a blessing.  Having all three is a veritable miracle.  It is certainly far beyond the minimal need and certainly adds to what I need to continue my existence in this world.

I feel like a Holy Roller (something to be avoided at all costs growing up in the Bible Belt) saying, "Thank you, Jesus" throughout my day.  But I do.  I think speaking it and hearing myself speak it is important for me ... for my benefit, rather than the benefit of anyone else who might ever hear me.

I feel like a dolt for conflating sustenance and subsistence and trying to tell my doctor that she was wrong.  More and more, I find myself opening up the dictionary (opening up Google) just to see what the actual definition is of a word that is one that I know.  I do this because I have developed a standard of knowing that requires my ability to define the word for someone else, not just use it in a sentence or understand a sentence in which it is used.  And I do this because my brain is failing.

I am not sure if I have crafted a coherent post about daily bread.  I would not, were I pressed, admit to any such thing.  But perhaps my communication stuttering here is still sufficient to get the meaning across.

I am thankful for my brother and for Marie Kondo, because I am thankful for the impetus to delve into the meaning  (or really the concept) of daily bread.


PS  I will crow that conflate is a new word for me and the first time that I have both understood it fully and been able to use it.  I follow several rather intelligent folk on Twitter and it is a word that has oft been used by many of them.  Although, when I learned the meaning of ubiquitous, back in the dark ages, the teacher using it explained that when we learn a new word it is oft seemingly ubiquitous because we begin to notice the new word when we are reading.  However, it often is not actually ubiquitous because we, as readers, skip over words that we do not know when we can understand the meaning of the sentence from the rest of the words.  In all likelihood, the word has been prevalent in prior reading, too.  I had been struggling to fully grasp "conflate," but having conflated those two words, I finally grasp the meaning of "conflate," as well as sustenance!

Thursday, April 18, 2019

A thousand cuts...


I think I might have written about this before, but I am not sure.  And, of course, I do not remember.

Death by a thousand cuts refers to a method of torture practiced in China until it was banned in 1905.  In it, the condemned were hung on a frame in a public venue and had slices of their body systematically cut off, resulting in a slow and agonizing death.

In my mind, death by a thousand cuts meant actual slices, small ones, that lead to ultimately bleeding to death.  The imagery of my mind fits better with the actual practice, I think, when it comes to the metaphorical comparison what my illness is doing to both my body and my life.  In short, this is a wretched existence filled with suffering.

I believe that these are, currently, all my diagnoses:

  • Sjögren's Syndrome
  • Dysautonomia (Neurocardiogenic Syncope)
  • PTSD
  • Reynaud's Syndrome
  • Reactive Hypoglycemia
  • Interstitial Lung Disease
  • Stage 1 Kidney Disease
  • Dysphagia 
  • Tinnittis
  • Small Fiber Neuropathy
  • Occipital Neuralgia
  • Trigeminal Neuralgia
  • Glossopharyngeal Neuralgia
  • Pudendal Neuralgia
  • Dystonia
  • Gastroparesis
  • Orthostatic Intolerance
  • Vascular Insufficiency
  • Asthma
  • Arthritis
  • Hypothyroidism
  • Allergies


That is quite a list, eh?  It is one that overwhelms me each and every time I see one of my visit summaries from any of my doctors.

If I have not forgotten any, these are the symptoms stemming from those diagnoses that I struggle with ... most of them on a daily basis:

  • Constant shocking in my hands
  • Constant aching pain in my left foot
  • Constant slicing pain in the pad of the top joint of my right middle finger
  • Dry eyes
  • Dry mouth
  • Dry throat
  • Dry skin
  • Shortness of breath
  • Tooth decay
  • Temperature dysregulation
  • Difficulty chewing
  • Difficulty swallowing
  • Mouth injuries (bitten tongue, bitten lip, bitten cheek)
  • Nausea
  • Bloating
  • Abdominal pain
  • Constipation
  • Profuse sweating
  • Muscle armoring
  • Shaking
  • Exhaustion
  • Migraines
  • Headaches
  • Dizziness
  • Weakness
  • Dehydration
  • Balance disturbance
  • Syncope (fainting)
  • Pre-syncope (near-fainting)
  • Exercise intolerance
  • Low blood pressure
  • Wide swings in blood pressure
  • Low blood sugar
  • Vasovagal response
  • Bradycardia
  • Palpitations
  • Chest pain
  • Esophageal spasms
  • Neurogenic flushing
  • Neurogenic rosacea 
  • Neuropathic pain
  • Joint pain
  • Loose joints
  • Bursitis
  • Tendonitis
  • Muscle pain
  • Twitching
  • Numbness
  • Tingling
  • Falls
  • Leg pain
  • Disappearing legs
  • Blood pooling
  • Blurred vision
  • Double vision
  • Vision loss
  • Meibomian glandular blockage
  • Difficulty standing
  • Difficulty standing still
  • Difficulty walking
  • Difficulty walking distances
  • Heat intolerance
  • Cold intolerance
  • Difficulty concentrating
  • Difficulty learning new information 
  • Difficulty thinking
  • Word recall problems
  • Short-term memory loss
  • Long-term memory loss
  • Confusion
  • Anxiety
  • Frequent urination
  • Hair loss


In addition to dealing with all of these, I take medication eight times a day and I am drinking water all day long to get in over 130 ounces.  Life is overwhelming and exhausting and despairing.

The rub is that I know I am at the beginning of my suffering in many ways.  Since I am only managing the symptoms instead of treating the disease/condition, I am, at best, treading water.  One can only tread for so long.  SIGH.

If you think of all of those symptoms as cuts that bleed, you can see that as my day wears on, it becoming more and more difficult to manage them, to endure them.

Day.
Week.
Month.
Year.

Life.

All the pain has changed me.  I am grumpy, much of the time.  But it is more than that.  The way that I look at the world and at my life is different.  It is difficult to explain.  My words are insufficient.  A type of cut.

Being ill has changed me.  The deluge of symptoms, day in and day out, obviously affects all aspects of my life.  I struggle to remain something near positive when around other people.  I do not know how to respond to socially polite questions (How are you?  What do you do for a living?).  I feel medically hopeless, faced with such overwhelming chronic incurable illness.  Trying to limit how that hopelessness affects my life in general is just another type of exhaustion.  And it often seeps into my attitude and interactions.  Another cut.

The latter is because I am forced to live a dual existence when interacting with others.  There is the Myrtle who is suffering and the Myrtle who is trying desperately to pay attention to that interaction, especially following and remembering the conversation.  For example, no matter where I am—home, church, store, medical facility, etc.— if I am standing still, a very large portion of my mind is monitoring the status of my legs, my heart, and my blood pressure and hoping fervently that the interaction ends before I have to sit down, lie down, or faint.

If my pacemaker is going off or I am feeling palpitations, ever so much of my being is paying attention to what is happening in my chest rather than what is happening before more or in my ear if on the phone.  If my face and ear(s) are flushing, I am divided between the intense heat in my skin and the shame I feel at looking so freakish and whatever engagement I am in at the time.  If sweating profusely, I can barely pay attention to others, because of my shame and my fear that the sweat will drop onto surfaces others will need to use, as has happened frequently when out and about.

It is never ending, this battle to remain present with others.
One more cut.

How do I want to live this way??

Wednesday, April 17, 2019

Two minutes...


I keep trying to write.  I keep finding myself unable to frame thoughts, unable to finish.  This time, I am finishing even it it means just hitting publish with a broken-off sentence.

SIGH.

It has been two years.  Two years.  It has been two years since I started therapy.  Or, rather, it has been two years since I started therapy again.

I have had pretty rotten experiences at trying to get help.

I went to a rape crisis center, after being assaulted the last time, and was told by the counselor, who listened to a brief history, that she did not believe I could ever be helped.  She refused to even let me have the 10 (or was it 12?) sessions the county offered.  Instead, she said she would help me look for someone on my insurance plan.  Well, that was something that I could do by myself!

There was only one counselor on my plan taking new clients.  He was not kind.  For one, he told me, every single time I paid, which was every single time I saw him, that I needed to thank him, because he was being reimbursed for less than his usual fee.  He would wait for me to thank him before writing the receipt I needed.

He also told me that I was not capable of loving and therefore not capable of loving God, so I should stop wasting my time trying to be a Christian.  He was, however, very much pro-hinduism (or what is buddhism??)  and spent much of our sessions talking about that.  I guess you don't have to love to practice hinduism?

I kept seeing him until I fled Alexandria.

After a year here, I believe, I tried to find someone to help me.  I saw a woman for almost a year, who kept trying to ... well ... there were good things that she did, but she kept trying to diagnose me with "disorders typically co-morbid (concurrent) with being an abuse survivor."  You know, being a surviver of abuse is not actually a disorder or a mental illness.  A lot of folk in both the mental health and the medical fields forget that.

After a year, when her non-profit agency treatment limit was reached, suddenly I was too disturbed for her to help.  She asked me to meet in a different room.  I was told I was this, that, and the other, even though I did not meet the diagnosis criteria, and that she was out of her depth.  I needed to see someone else somewhere else.

It was a long time before I tried again.
The thought of starting again was overwhelming.

Then, I went to a women's organization.  Surely, a woman's organization would know about being a survivor of abuse, right?  Well, the first counselor with whom I worked was promoted.  I had to start all over again.  When I got up the nerve to do so, that counselor took another job.  I didn't think that I could try a third time.  When I did, the kindest thing that I can say about that counselor would be nothing.  But I will say that counselors should not yell at you, give you gifts, or go out with you.  Counseling is not about being friends.  I am still wounded from some of the things that she did and said, but I can recognize that she was not professional.

I thought I was done.

But then something happened that hurt me deeply and made me feel as if I was being trapped, made me feel as if I might never escape.  Among other things, I felt as if I might never escape the labels that are all too frequently put up survivors of abuse, even by folk in the medical field.

I tried one last time.

One thing that I have learned is that this is the first genuine therapy that I have ever had.  I have learned that, despite my history, I am not hopeless as far as the potential of therapy.  Nobody is.  I gave learned that being able to love is not actually a requirement for being a Christian and that whatever faith I choose is not contingent upon not being an abuse survivor.  I have learned that payment, or lack thereof, is not a guarantee of the quality of therapy.  I have learned (by experiencing) what professional behavior by a counselor looks like.  And I have learned that I am capable of change despite my own fears and deep-seated beliefs.

However, I have also learned that I am, in many ways, only at the beginning of therapy.
That is frightening.
And frustrating.

After two years, I am finally at the point where I can begin real work.  It is not that I haven't been working during the past two years, but I have, primarily, been learning that her office is a safe space for me and that it is okay for me to be ill.  It is okay for me to desire the things I desire as someone who is chronically ill.  However, most folk are either uncomfortable with illness or unaware of what to say/do or both.  Often, it is both.  Plus, it is just plain easier if you have cancer.  People at least understand cancer as a general concept of being ill.

I have learned to be brave in saying what is on my mind, even if it takes a few sessions to raise the topic or speaking takes 10 minutes to get out a single sentence.  That is a terribly difficult lesson, since a fear of trust is one of the 12 Life-Impacting Symptoms of Complex PTSD in the article I have tried to share with friends and family and others in my life.  I absolutely stink at trusting.

A doctor I saw recently said that she had shared the article with 45 patients, as well as with other doctors and with professionals in the mental health field.  My therapist has done the same, though she has not given me numbers.  It is a life-changing article.  It is a freeing article.  It can be a conversation starter, a door-opener, and it can be an effective tool for education, coping, and/or healing.  It is certainly eye-opening.

One of the ways that it has helped me is that I am more aware of some of my symptoms of PTSD and, as a result of that, I have started to identify some of my triggers.  One example is that I am much more aware of when I am muscle-armoring.  Whilst I am not always good at identifying why I might be doing so, I am aware, at that time, of how the muscle-armoring is affecting the other symptoms plaguing my body.  Muscle-armoring pretty much makes everything worse.  Trying to relax my muscles, to focus on doing so, helps both the PTSD and how I feel physically, to some degree.

One of the greatest blessings that God has provided me is bringing me to a therapist who is also a nurse (practiced years ago).  She understands the profound and overwhelming impact chronic illness is having on me, especially since being diagnosed with Sjögren's Syndrome.  She gets it.  And she never, ever allows me to belittle or dismiss that suffering or that burden the way I am wont to do since that is a stance I have oft experienced by others.

You could say that I have spent the last two years getting to a place where I can begin to look at the impact my ill health is having on me without flinching.  But I flinch a lot.  I am, however, far more able to communicate my ill health without being crippled by shame and waves of certainty of my unworthiness.  All you need to do is friend or follow me on Facebook and you will see that!  Yes, my FB wall is not peppered with all that is sugar and sweet.

Although I do like sweets.
A lot.
Maybe too much.
Can there be too much liking of sweets?
Maybe not if you are ill.
Especially with Sjögren's.
Right?

But, I suppose, I have digressed and the hours are passing as I am trying to write this.

Why did I start this post? Tonight, I watched something that was sad.  Amos looked up at me, as it was ending, and then left his comfortable position atop three pillows (being King-of-the-Mountain is one of his great loves) and I told him, "Yes, momma is sad."

And then.

And then I said, "I'm never going to be a mother."  Hearing the words in my ears, those words spoken by me into my ears, gutted me.  I burst into tears as I felt them.  I am never going to be a mother.  I sobbed them as tears flooded my normally desert-dry eyes and began streaming down my face.  For all of a mere two minutes, I felt those words.  Then, my mind and my body fled from the feeling.  And I let them.  In the next minute, I had disassociated and my mind and body stilled.  At four minutes, my face was still rather wet, but my eyes were dry and I was calm.

But, you see, for two minutes, a veritable eternity to me, I felt.  When I tell my therapist, she's going to struggle to hide her joy and happiness for achieving such a massive milestone.  I only had to tell her once that getting all giddy over something I did is very hard for me causes me to shut down.  This past week, I told her about making a new friend, and she squashed down her giddiness in a rather impressive manner before I could finish blinking.  Though, my therapist could not keep a twinkle from her eye when she asked me questions about said friend.

Even I was a tad ... happy?? proud??  relieved?? ... that I allowed myself to feel for two minutes.  I know my therapist will be giddy beyond measure.  However, her very first question will be:  "What were you feeling?"  Ah, crap!  I stink at identifying feelings.  I tend to give states of being instead of feelings.  And, in this case, that is what I have:  grief.  I was grieving.

I still fantasize about being a mother.  I know that my body will never make me a mother.  I mean, I still have no signs of menopause, so, perhaps, with lots of medical help, I could achieve pregnancy.  But I doubt that my body would carry to term.  And I highly doubt any doctor would agree to put me through the mental trauma it would take to inseminate me or risk what a pregnancy would do to my health.

The truth is that I still fantasize about being a mother through foster care.  I know that I cannot be a mother of a baby or any child who would need to be picked up or carried.  I am too weak for that now.  I mean, I am really only able to do so with Amos because of 1) his weight and 2) his preference for being up on my shoulders.  I am fairly certain it would be impossible to put a baby up on my shoulders or any young child weighing 22 pounds or less.

And then there is the whole fainting and nausea and pain situation.  I need to be a foster mother whose charges are able to clothe, feed, and even get themselves to school in a pinch, rather than need 24/7 care.  I need charges who need a place of safety and a freezer full of mason jar meals.  I need charges who are still in need of parenting, but who are testing the waters of independence.  Basically, I need teenagers to mother.

But no one in his/her right mind is going to put a foster child, even a teenager, in the house of a chronically ill person.  All those fantasies aside, I am never going to be a mother.  For many women, that is a devastating realization, married or single.  For me, it is the death of a hope I have harbored most of my life:  the hope of the kind of family I long for, the hope of a chance to do things right.

I try to tell me sister more frequently now that her mothering is a marvel.  She loves her children fiercely and is affectionate with them.  She is proud of them and tells them so.  She goes to school and sporting events.  Although a single, working mother, she tries to be involved in schooling and sporting even if in small ways.  She takes time off of work just to be with them, not because she has to do so.  She thinks of her children often and lets them know that.

To me, it speaks VOLUMES to me that both of my sister's teenage sons will talk to her about their struggles, even if getting there with the one with autism can take longer.  And it is unfathomable to me that she continues to reach out to and try to help her adult daughter, a daughter who has yet to take responsibility of her own life and often wounds my sister in what many would say are unforgivable ways. To me, my sister is selfless in her mothering, even if some of her family say that she holds her boys too closely and I wish for her boys to have a few more experiences than they do.

I know that my family has strong feelings about my sister as a mother, but she has not been supported as such, respected as such.  How difficult that must have been for her all of these years! Nor did she have a strong parenting experience herself.  In short, my sister mothers in a way she was not mothered.  She got the chance to have the kind of family she wanted.

I never will.
I will never be a mother.

How does that make me feel?  I have not a clue.  I know that it was a powerful emotion(s).  I know that that my emotion(s) came from a place of grief, at least.  And I know that my emotion(s) was too much for me.

But I remained present in that grief.
For two minutes.

Friday, March 29, 2019

Melding...


I've been trying to write this one post for three months now.  I decided to stop.  I don't know when I can finish it.  Perhaps I won't and will just publish it as is.  For now, I thought I would get back to writing before I stop forever.

Life has changed for me.

I think I have become sick.  By that I mean, I no longer believe that I can pretend to be well, the way that I do when folk come around.  Don't get me wrong.  I'm certain to still try.  But I am struggling to get through the days and nights.  They have melded together in a sea of extreme fatigue, pain, pre-syncope, and nausea.

I should that it is more like standing on the shore and being pummeled by waves.  In between them, is a gentle quiet that I enjoy with Amos.  I am still trying to live in the in-between.  But the fatigue is making that rather difficult.

It is rare for me to have productivity in my days.  Primarily, I wake, tend to Amos, and languish on the sofa.  I have been letting dishes pile up in the sink until it is so full that I must do them.  I dislike the lack of visual rest, but the very thought of doing anything exhausts me.

Trying to concentrate enough to do anything is also exhausting.  Tending to my bills and re-jiggering my meager funds takes up the majority of whatever brain power I can muster up.

I did decide to sell things around the house, starting with listing my antique typewriter.  It was hard, letting go of the things I have bought over the years and things given to me by others.  However, I had much success selling on Facebook Marketplace.

Last year, I was approximately $600 behind in medical at the close of the year.  I also have the $349 lung wash hospital bill waiting.  And my dental visit in February resulting in the 5th cavity/filling in just under a year.  That bill was $330.  I was trying to get to $1,200 so that I could start the year (even though it was already February when I started selling.

The more I sold the more brutal I got with myself as far as choosing more items to sell.  I sold antique books, antique cameras, and antique doodads, such as a postage scale, aviator glasses, and toiletry tins.  I sold and sold and sold, which was exhausting between taking the photos and measurements, creating the listings, chatting with buyers, and getting up for their pickups.  I sold and sold and sold until I reached $1,848 across 104 sales.  I was so very excited to actually get ahead.

Alas, though.  My eight-year-old washing machine broke.  I gave it the old college try as far as repairing it, but whilst I learned how to open a machine and futz with the pump, the washing machine still needed repair or replacement.  I chose the latter, believing repair would be throwing good money after bad.

I was so proud that, over the last six months, I had started an emergency fund savings account and was nearing $1,000.  Dave Ramsey would be around.  With all my budgeting savings accounts, I thought surely and emergency fund would be superfluous.  Alas, I was wrong.  This ungrateful wretch cannot be thankful that she had the funds to purchase a washing machine, because she is still despairing that she cannot win for losing.

For the past three years, I have slivered my budgetary pie and looked for savings every which way to Sunday.  However, each time I gain myself some breathing room each month,  I find myself facing another medical bill or the like.  It seems like every week I'm trying to figure out how to pay for another medication.  SIGH.

So, my days meld into one another until they are a sea of nothingness.  I wake, putter, and then fall asleep again after just three hours.  I wake, putter, and then fall asleep a second time.  I have sometimes even had a third nap.  I wonder at what my life has become, at what is happening to my body because of the ravages of Sjögren's Syndrome.

I am ill each and every day ... in body and in spirit.

Wednesday, January 09, 2019

Frozen...


I'm frozen.

I've three blog entries started, but paused.  Frozen in thought.  But it is not just that.  I am frozen in body ... nearly.  I am so bloody exhausted that just doing one single thing a day leaves me needing nap after nap after nap.  I cooked ham one night and roast the second night and it took me five days to finish cleaning the kitchen.  Not having visual rest in there drove me crazy and exhausted me further, but there is no one else to clean.  Just me.

I'm frozen.

I'm frozen in my thoughts, unable to move further from the ones that have piled up around me, holding me in places I do not wish to be.  I am frozen because I am completely and utterly overwhelmed.  Some of it is good, but most of it is bad.  I cannot move beyond the moment when my pulomonogist said that we had to shift our treatment thinking from getting better to not getting worse.  From the moment when she said we had to weigh the dangers of the new treatment with the dangers of my symptoms, or rather the progression of them, of the disease.

I cannot move beyond where we've landed in therapy with regard to sexual abuse.  Or where we've landed with regard to PTSD.  Or looking at the enormity of what is happening to my body.

I'm frozen.

I'm frozen in dealing with all the medical issues before me.  The tests and the new diagnoses, both of which are extremely painful.  The many doctor visits and trying to swallow bad news after difficult news after troubling news.  The medications and what some of them mean in taking them.  The costs that are simply more than I have or more than I can squeeze out of my bone dry rag of an income.  Not a single drop can be had, and yet I have new expense after new expense.

I'm frozen.

I'm frozen in fear.  Fear of what is next.  Fear of my own body.  Fear of not being able to remain independent.  Fear of my mind.  Fear of my new mediation.  Fear of my salvation.

I'm frozen.

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.
Waiting.
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

Spoiled...


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.