What no one wants to hear...

I spent Sunday and Monday working on building up my larder again, which always makes me feel as if I accomplished something worthwhile.  It is rather amazing to me this way of cooking I have learned.  I mean, learning to cook is the only thing in my life that is moving forward.  The rest of me is falling back, losing ground, fading away.

With all the things that I have learned to cook, I have more than a dozen "staples" now that I like to keep on hand as my main meals.  When the mason jar drawer becomes full, I get out the pots and start cooking.  Usually, I just cook what I am hankering for, but this time I took an inventory of the basement freezer to see which of my staples were low.  That changed my cooking agenda and leaves me with a full freezer of my favorites with 14 different options from which to choose.

It was nice have forward progress for once.

Tuesday ... Tuesday I spent trying to say something first in therapy and second to a friend.  But the words I was speaking did not seem to translate from my brain to their ears.  I have been struggling mightily ever since the colonoscopy, the visit to the podiatrist, and the exchange with the neurologist's nurse.  All three instances of really crappy medical care.  But instances that drive home the need to be ... compliant and quiet as a patient.  Anyone who needs more, needs care beyond that which is not already scheduled and practiced and normal is someone to be crushed.  Crushed by callousness.  Crushed by cruelty.  Crushed by being crazy-labled.

Shut up.  Be still.  Wait until it is over.

More and more, I feel as if that is really what I need to do in the medical world and out.  That I should just ... live that way.  That crushes me.

So, of course, I thought about writing about what no one wants to hear as a means of turning aside my thoughts about the Sanctuary.  The torment and torture of my bowels.  Because I cannot escape them.  And I deal with them daily.  And the wretchedness and ... the shame.  Shame from the part of my body torturing and tormenting me.  Shame from where I am whilst being torment and torture.

I need to poop and I scream from the pain of my pudendal nerve flaring.
I need to poop and I struggle to not faint from the trigger of pain.
I need to poop and I battle nausea from pressure against my vagus nerve.
I need to poop and I vomit from pressure against my vagus nerve.
I need to poop and I battle pre-syncope from pressure against my vagus nerve.
I need to poop and I faint from pressure against my vagus nerve.
I need to poop and I grow weak from pressure against my vagus nerve.
I need to poop and I tremble and shake from pressure against my vagus nerve.
I poop and I scream from the pain of my flesh tearing.
I poop and I scream from the pain of my pudendal nerve flaring.
I poop and I struggle to not faint from the trigger of pain.
I poop and I battle nausea from pressure against my vagus nerve.
I poop and I vomit from pressure against my vagus nerve.
I poop and I battle pre-syncope from pressure against my vagus nerve.
I poop and I faint from pressure against my vagus nerve.
I poop and I grow weak from pressure against my vagus nerve.
I poop and I tremble and shake from pressure against my vagus nerve.

I take five different things just to try to poop every day, because my bowels are so very slow.  This leaves me feeling crazy, because ... well ... who would want to poop, when pooping causes such wretchedness in the body? 

Because my bowels are so very slow, the need to poop can start hours before the act can happen.  That means I am ill for hours.

When I do not manage to go, then I am stuck with the agony of constipation.  A while back, I went 19 days before I finally tried a medication that tipped me over into diarrhea for more than a day.  Violent diarrhea.

And then there is the gas from both a medication I take and from the slow bowels.  The pressure of the gas is enough to trigger pain, nausea, weakness, fainting, trembling, and shaking.  Sometimes, when it is particularly bad, I will mash on my abdomen to try to move the gas along.  But I can become so bloated I look as if I am expecting a baby and the pain of it leaves me writhing on the bathroom floor or flailing about in my bed as if I were a beached whale.

Daily, I deal with wretchedness in my body because of my bowels.
Wretchedness and shame and silence.

It's one battle amongst many when it comes to my body.
A lonely battle.
A shameful battle.
A silent battle.
A weary, dispiriting battle.

If only...

I've been too afraid to open an email from a dear friend of mine. Or rather I have been too afraid to open her attachment. If I were able to truly trust anyone with my ... being ... it would be my dear friend Mary. I know that she will be gentle and always takes such care with her words and the ideas she would like for me to consider lest they tumble me off into despair or find me spiraling back into the clutches of my past. I even really like the idea of coming up with a collection of mantras for me to cling to when my mind is troubled over specific things. Still, I am afraid to see her first draft. To see the words she might have for me.

However, I did open a bible verse that she sent to me. Being ever so sweet, Mary tried to send it in a lovely font for me. However, it is not one I own and so was opened in the harsh font of Ariel. Font aside, I just loved the verse:

“While we are still in this tent we groan, being burdened—not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life.” ~2 Corinthians 5:4

Now, here's the thing.  This is an example of something that I am no longer able to read.  It is the chief reason why I primarily only re-read now.  For I have been an avid reader since I was knee high to a grasshopper.  That I am losing my ability to comprehend what I am reading grieves my very soul.  I can hardly touch the thought.  So, I avoid it.

More and more, though, I come across things that I struggle to comprehend.  I look at this verse and read the first bit and think ... okay ... and then the next bit and think ... wait ... and then the third bit and think ... what? ... the bits are all confusing and seemingly unrelated and not a thought that can be built from beginning to end.  But I know, in my head, that they can be.  And that I used to be able to do so.  And that frustrates me, which makes the whole situation all the worse.

But I do know that this is surely a very Myrtle verse that Mary found for me.  And I am certain that there is great comfort in it for me to receive.  So, I loved it.

If only I could comprehend the words.  

SIGH.

Exhausted...

Every time I look at the haven's fencing, I grow giddy.  However, I have spent the day doing nothing besides watering the pots on the three porches and the new plantings.  And I only did that because we are still in the throes of August-like weather.

I am very, very, very weary from sealing the fencing.
Weary, but giddy.

Looking ahead, I realized that I have a long week ahead of me, with appointments Tuesday through Friday and groceries needing fetching on Monday.  I am not sure how that happened, since I vowed, after April, never to schedule myself like that again.  And, the following week, I have another three appointments, chief amongst them being the MRI of my brain to see if there is an obvious cause for the constant shocking in my hands.  Day in.  Day out.  All day long.  Two hundred and twenty days now of said body torture.  SIGH.  And, of concern, that following week will also be the next round of testing on my lungs to see if the round of high dose steroids is helping.

I am already exhausted just thinking about it.
Exhausted, but giddy.

What I missed...

I've spent the past three days (today included) torturing myself by sealing the wood panels that Firewood Man built for me out in my haven.  I grossly underestimated how long it would take for me to do this homeowner's project and how much sealer I would need.  I know raw wood soaks it up in astounding ways, but I didn't remember that.  So, I had to take time out to fetch more, which is exhausting for me.

Every single time I lay eyes upon the fencing Firewood Man created for me, I am amazing anew at what he did for me.  The cockles of my heart are warmed and my spirit refreshed.  Since I pass by them turning into the garage, I am always cheered coming home from my appointments.

But!
But, oh my!!

My father taught me to use Flood's CWF sealer.  I have always used clear, because it leaves wood a rich, wet sort of look that I have found attractive.  However, I had several folk suggest that I stain the wood a color, most specifically GREEN. I thought about that, but I am not sure I really understand true stain colors and how they work.  However, I knew that CWF comes in a color called "honey gold" and I have been thinking on using that.  Finally, at the moment of purchase, I chose it.  And, I must say, that the end result really did except my expectations.

My haven just got that much prettier!
And peaceful.
And full of solace.

I have held off really adding flowers and plants to my haven, because I haven't been sure how I wanted to do so.  I mean, I am trying to not crowd the place.  And the fountain and the tulip window and the wind chimes all add a specific element that I have enjoyed.  I mean, seriously, now that the fountain is properly gurgling, I have soaked up the magic of the creation of water nearly every second that I have been out there.  I wanted the growing things to also be as good as a fit as those three elements have been.

Whilst I was working, I hung a basket from the tree in a half dozen spots.  I liked none of them.  And the fencing is so beautiful to me, I am reluctant to put a hanger on one or more of the posts.  So, I thought more about my options.  When I was fetching annuals (and on my failed searches for thyme), I spotted some really tall ceramic planters.  I think ... think, mind you ... that I would like to put a tall ceramic planter in each of the corners.  And, wild as it seems, I might just end up putting chives in them to have both flowers and herbs!  [Someone brought me a nice patch of chives on Thursday.]

The planters would need to be a color that complements the pots of my fountain.  And, I think, maybe a squarish sort of shape, so that they don't compete with the fountain in the space.  In any case, I am not certain, but I do think that that might be the way to finish off my haven.  At least, I have been thinking that before I've gone back to look at the pots I saw to see if a second look speaks further to me.

Other than tending to my fence (in four years time someone else is going to have to do the re-sealing), I also tried a new compound butter recipe:  Roasted Garlic and Bell Pepper Balsamic Butter.  Oh my goodness!  This is just plain amazing!  Who would have thunk you could put balsamic vinegar in butter and come out with something super tasty!!  I did make a significant change to the recipe:  I swapped basil paste for the parsley.  I think that it compliments the other ingredients better, especially the roasted red pepper.

I've shared it with my realtor and some neighbors I am trying to get to know better.  Both found it it be exceedingly tasty.  I do not disagree.  In fact, on the morrow, I plan to make another batch so that I can have more for myself, for I still plan to bring the other small portions to my doctors and my therapist.  This is as much a keeper as the Orange Cranberry Butter.  Or course, the Herbed Goat Cheese Butter is pretty spectacular atop steak.  My realtor and her husband had me make them up a double batch to serve at a dinner party atop some London Broil.  She said her guests raved over it.

I am tickled that others are enjoying the butters that I am enjoying exploring.

Now that my labors are quit, I have gone back to rest (and recovery) mode.  I have been shaking for hours and hours now, and my pacemaker is still keeping my heart rate high.  So, I do not feel as if I am resting, but I am.  Well, resting and watching a bit of television.  In this case, I'm watching the Roku channel, looking at the movies that are leaving.  I first watched "The Queen," which was not what I expected and caught me off guard.  So, after that, I thought I would watch "Dirty Harry."

I know that my father introduced me to "Dirty Harry," but I do not remember watching the movies with him.  I wish that I could.  Watching made me sad, for I had a thought that overwhelmed me:

I spent so much time avoiding the conversation that I could never have with my father that I missed the conversations that I could have had.

I feel as if I have been punched in the gut, hunched over and gasping for breath.  It is hard to believe that he has been gone now for five years.  It feels as if he died just yesterday.  That is, when I dare touch that part of me ... which is very, very, very rarely.  So, the idea of what I missed with him is overwhelming.

This evening, I have been struggling with loneliness more so than usual.  [I am lonely every day now.]  I was so busy looking at the forecast to find two consecutive days in which I could seal the fencing (foolishly thinking that I might only need one), I didn't realize that I had come up against Memorial Day.

For me, I often struggle to know what day of the week it is.  I am not good with time, nor do I mark the passing of the days well.  Since I am no longer working and am so socially isolated, I simply do not track weekends or holidays the way that I used to do so.  You could say that every day is a weekend, that everyday day is a holiday ... except for the fainting and the nausea and the neuropathy and the migraines and all the other wretchedness.  But, today, with all the family stuff I started to see on social media, it hit me.  Once more, when the rest of the country is gathering with family and friends (okay ... not the whole country ... it just feels that way) I remain alone.

Alone with the thought of what I missed with my dad.

So, I am giving thanks for the color honey gold and for labor finally ending and for tasty butter and for fluffy white puppy dogs, who are getting ever so much better at comforting.

Not felled...

I've been working on tending to things in the yard. I thought that I had just three things left, but I somehow had several more tasks that needed done as well.  And, in doing them, I have put my working, resting, working, resting plan in jeopardy.  For the fence panels in my haven need to be sealed and tomorrow and Thursday is the first real opportunity that I have.

However, I did knock everything else off my list (and the extras) this evening, finishing by 9:00, which is well before my usual midnight gardening!  I got the remaining annuals planted (though they look so very dweeby in a circle around my ornamental magnolia I might rearrange them), the stray sedum in the front bed relocated, the bushes in the front bed fertilized, the pavers lining the front bed raised and straightened, some ornamental thyme relocated, a row of coral bells that was four plants is now a more balanced row of five, and three spots that I had not yet gotten to weed are now cleared out again.  In a nutshell, other than maybe moving the marigolds again before they get started, I do not need to do anything other than weeding for the rest of the growing season.

Except for that pesky sealing.

I adore tending wood.  All wood.  It is just that I am not capable of standing the way that I will need to be standing to get the fence panels done.  Alas, I am slightly dreading the morrow.  I dread not being able to do the work needing doing in my haven, not being able to be a responsible homeowner. For I know that that time is coming.

And then what will happen to me?

But that time is not now.  Now is a time when I have done the best job I've ever done in trying to manage my strength and tend to the things before me as I am able without punishing my body and leaving myself felled for days or even weeks.  Now that is a most remarkable accomplishment on my part.

The mantra...

Shut up.  Be still.  Wait until it is over.

That was the mantra that saved me when I was little.  It is the mantra that has supported me and bound me my entire adult life.  And it is the mantra that I though I was trying to finally escape.

But the past few weeks have me believing that it is my only hope for ... for ... for successful medical care.  Because, you know, for the most part, medical personnel just want to be a slab of meat.  If that is harsh, I believe it is true.  Of course, the nicer way might be to say that they want compliant patients.  That means patients who do what they are told, when they are told, and who fit the mold.  PTSD patients do not fit the mold.  SIGH.

Thinking about needing to take up and embrace that mantra again with regard to medical care is crushing me.

I tried to speak of this with my sister, but did not get all that far.  However, she did say something sweet.  She said that she hoped that, one day, I could see that the way others treat me is not a reflection of me, but of them.  That what happened with the colonoscopy, with the podiatrist, and with the nurse at the neurologist was not about me, but about them.  My mind simply cannot grasp that.  After all, they are responding to me, treating me the way that they did.

I worked so very hard to prepare for the colonoscopy.  I worked out what I needed to feel safe and to minimize triggers.  I was calmer than I usually am, perhaps because I felt more confident going in with having a PLAN.  Only it didn't help.  I was treated awfully.  And I still ended up with new flashbacks.

It was the dismissiveness, the absolute disregard for my person that is the hardest to bear.  Asking for a wheelchair to get to the bathroom and the abject refusal.  Two nurses with a death grip on my upper arms determined to frog-march me there themselves.  Because it was faster?  Because they didn't think that I needed a wheelchair?  They didn't even listen to my realtor, whom is also a nurse, asking for the same thing.  Even after my telling them that I do not like to be touched.  Even after knowing it is in my medical record, the PTSD, the sexual assault, the triggers.  They simply ignored me.

The nurse at the neurologist.  She was also so very dismissive of me.  She was aggressively rude about my meds list and then my answer to why I would need so many.  Her "so?" was really a "so what?" and it crushed me.  I wanted to leave right then and there, to escape what was sure to come.

Yes, the neurologist herself was a Godsend, in no uncertain terms.  And yet I fear going back.  I fear seeing her nurse again.  I fear what she will trigger within me.

My dear friend Mary posted this on her Facebook wall.  To me, it was as if she were posting it for me.    When I shared it with my therapist, she went ape over it.  Because, you see, it is perfect.  This meme really does speak the truth about PTSD anxiety.

I wrapped this meme around me like a piece of armor.  Someone understood.  My therapist got how profound it is to me to have and to be able to point to with others.  I was emboldened a bit.  And yet it all came to nothing.

Because I am nothing.

Shut up.  Be still.  Wait until it is over.

Puttering about out of doors...

I have been working on putting things together for the spring, though we skipped right to summer.  It is already stinkin' hot!  

On Mother's Day, I did the Spring Great Migration of the succulents that have been wintering in the solarium.  I wanted to do so earlier, but I couldn't find the tray that I use to carry a few pots at a time. Carrying things is difficult, but the amount of stairs needed in the migrations is what makes the task so very difficult for me.

I just so love the front porch filled with greenery!  I still need to get some six-packs of annuals to fill the two planters and three other pots.  Two others I think I will plant more succulents.  I do not wish to add to my bi-annual migration labor, but both pots are really too small for annuals and could be better served by succulents.  The solarium is crowded in the winter, but could bear just two more pots.  Both a floral ceramic parts.  And both are a bright spot on the porch.  So, I want to keep them and I want to convert them to permanent plants.

I also set up the fountain on the front porch.  Oh, man!  I was replacing the pump every year.  Now that I have wintered the pump indoors, I have not had to replace it for three years!  Imagine that!!  Anyway, the pump is installed and the water filled.  I don't have it gurgling at much as in the past, but I do enjoy sitting next to it.

I still need to power wash all the pollen off of the porch floor and clean up the piles of leaves still left from last fall.  And I have a few planters and pots that are awaiting some flowering annuals to bring  a color other than my beloved GREEN to the front porch.

On Saturday, I worked on cleaning up the tufts of grass here and there in my sidewalk pavers.  I do not want to put out killer stuff, because I also have the beginning of moss growing in between some of them.  So, I scooted along my back side the length of the sidewalk and the walking paths, cleaning them up.

I also worked on doing some weeding in my beds.  I cannot do much, but I did, for pride's sake, weed around the three azaleas that I planted last year.  I am very much looking forward to them blooming in all their glory.

The middle one is ahead of the other two, which bums me a bit.  I just don't understand why they are not blooming together.

The middle one is a creamy yellow, whilst the outer two are a brilliant orange.

By pride' sake, I mean that the plan for the bed beneath the rose of sharons, where all those seedlings pop up every year, is to blast it with weed killer.  But I wanted the area around the azaleas cleared now so that I can take photos of them without a million and one seedlings beneath them.

And on Monday (skipping around the days here) I worked on getting the fountain out in the haven set up again.  I had essentially planned on having to spend money on it this summer, but I was able to get it up and running and gurgling significantly without having to do so.  Instead, I changed out how I stack the two pots.  Last year, I followed several examples of stacked-pot fountains and used a plastic pot filled with drill holes so that water can circulate all around it.  This time, I stacked old bricks cross-hatched so that the top pot would be more level.

In order to create a column down the middle in which to drop the pump, I had to put the bricks further out that solid stability would allow.  So, the top pot and its tray of pebbles teeters a bit.  I wonder if it will hold its integrity if a heavy bird lands atop it to play in the water.

I am more and more and more pleased that it gurgles louder.  At night, in the deep stillness, I can hear the water on the back porch.  And I can see the higher curve of water from the kitchen window.  So, my cockles are warmed.

Today, after being accepted to another medical research study, I bought things for the yard, front porch, and raised bed.  I am trying, very hard, to finish of empty spots in the beds.  So, I purchased a hydrangea for the far end of Fern Bed 2.0.  That means I have hydrangea book ends for it!

Fern Bed 2.0 is coming along nicely in its second summer.  There was a spot over to the left of the middle of the bed where none of last year's transplants came back, so I relocated 3 more small ferns from the original fern bed.  That fern bed was started from a few stray ferns I found in my yard.  Now,  have two glorious collections of ferns and three magnificent specimens in the shade bed on the far side of the house.

I was too weary to walk around and take a better angled photo, but the few hostas I found have now been split and grown into four double clumps (eight plants).  I stuck the ferns in between them, not sure if I would like the look.  I still am not sure, but the ferns sure do love the location.  This bed is the epitome of low-maintenance.  I weed it about three times over the summer and that's it.  No watering.  No fretting.  Just joy that keeps on giving.

The other side of the house has been a bit of a failure.  It had that wretched snow-on-the-mountain stuff in there for several years.  Firewood Man finally killed it all off for me and I plant ajuga there, mostly transplanted plants, but I bought four of them, I think.  They all died.  SNIFF.  SNIFF.  The bed was mostly dead last year and I tried to ignore it.  After talking with a guy at Menard's, I decided on planting stella de ora.  It will stay proportional to the space and will re-bloom.  Plus, I have had good luck with the other daylilies I have ... though those all came with the house.

The rest of what I bought were herbs and two vegetables for the raised beds.  This year, the new vegetable I plan to try (to kill off most certainly) is eggplant.  I do not think I am going to do tomatoes again.  I still have sauce from last year and I don't have visitors to eat up the fresh tomatoes when I don't have enough for sauce.  Not being a tomato-eater, it really doesn't make sense to grow them.  However, they have been my best crop to date.  Go figure.

And I bought annuals for the pots on the front porch, the two pots in my haven, and the bulb bed.  I did so enjoy having some annuals in that bed last year.  I am rather bothered that my bulbs mostly did not bloom this year. I don't know if they are all petered out (does that happen with bulbs?????) or if I somehow killed them off (more likely).  I would like to add some bulbs next fall.  But, meanwhile, I think I would like to keep it the one annual spot in the yard.

Finally, I bought soil, peat moss, and compost manure.  I already realized that I had enough potting soil from last year to get the permanent plants into the ground.  I also might possibly have bought one too many bags of peat moss.  However, I won't know until I get all the six-packs planted.

You see, every year I fill those massive hummingbird planters with good potting soil. Those planters and the other pots I use for annuals.  And every following year I re-fill them because the soil is all dried out.  This year, I have decided to try and rejuvenate the soil in the pots with peat and compost manure and forego filling them up with potting soil over and over and over again.

Now, mind you, I know little about plants, but I suspect that the soil in pots gets tired more easily because it is watered more frequently.  So, maybe my plan will not work.  However, I still aim to try.  It will be cheaper in the long run.

I should admit that I am spending the medical research money before it arrives, as well as a check I know I will get for my birthday.  I just do not have money for the yard/raised beds/front porch.  I need to start a savings account for that (to also include the systemic fertilizer I put on my bushes and trees once a year), but I just don't see where that money will come from.  As in ... I don't have what I need!!  I did do me one of my beloved spread sheets based on what I spent (need to spend) this year and the total came out to roughly $15 a month I would need to save.  Impossible as that might be, it is good to have a goal.

Oh, yes, the other things that I bought were two cans of sealer and a brush for the panels in the haven.  They've been drying out all year, having been built with rather green wood.  Now, it is time to start doing the preservation and maintenance work on them.  Hopefully, I will only need to do it every other year.  And those panels will now be staggered with the porches, since I will NOT be doing them this year!  Just a good power washing (soon and very soon) and again in the fall.

With the need for sealer every year, I suppose I should round that savings goal up to $18 a month.  Spreadsheet adjusted.  Yard thoughts closed down for the day.

Although I am utterly exhausted from fetching prescriptions and yard/raised beds/front porch/haven panels things, I still need to get my time in on the treadmill.  Even though I will barely be able to stay on it, I have learned that if I skip a day, then I will skip 10 days ... or more.  It is so difficult for me that I start making excuses each day following the one that I miss.  And, well, if it is not in my Fitbit, then my exercise doesn't count!  So, I have to get myself down to the treadmill and started in the next 25 minutes!

Another loss...

Today, in therapy, there was this moment of pure comfort.  I was telling my therapist about my appointment with the pulmonologist and she spoke into pause of mine: "You must have been terrified hearing that."

She gets it.  She understands the reality of what I am facing, the enormity it could be.  This isn't a matter of worst case scenario, it is about understanding that I don't have an answer, but rather a treatment trial that, hopefully, will work.  But, because it might not, I have the monthly re-testing to closely monitor the situation.  The reality is, I have had a significant decline in function whilst awaiting my appointment due to, at this point and time, indeterminate cause.

But that bit of comfort came after learning that my therapist can no longer see me weekly.  She's been retired since the fall and cannot really manage all the folk she's trying to ... finish ... working just two days a week as she is doing.  All of us weeklies need to go to bi-weekly.  I get it, but ... how do I live this life without her help?

SIGH.

She has been helping me for 13 months now, eleven of them no longer charging me.  For each session, she receives a mere $20 from Medicare, which I am most certain goes to the practice of which she is a part.  So, every single week, I have marveled at her mercy and yet worried that it will come to an end.  Not her mercy, but that she's retired.

How long will she carry those of us she didn't want to abandon in her retirement?
Each and every week has been a blessing.
Each and every week brings me closer to the end.

And I am not ready.

The thing that she also gets is how completely and utterly overwhelmed I am each and every day.  She's watched me grow more ill over those 13 months.  She's seen me.  And she understands how Sjögren's has brought such an increase of suffering to my life.  The suffering and being overwhelmed all day long, every day is too much.  At times, I can shove it all far enough from me to savor the bits and pieces of my life that are filled with grace and peace and joy and not ... illness: Amos, cooking, my home, my haven.  At other times ... I struggle against drowning.

I really, really, really don't know how I will go from weekly help to bi-weekly.
I just don't.

But my dear friend Mary is formulating a plan.
I do sure love me a plan.
The mercy of friends.

How...

I don't know how to write on here anymore. I mean, I long to write, but I find the task overwhelming for myriad reasons.  Chief amongst those is the constant grief I battle over the loss of my cognitive abilities, such as the ease with which I used to be able to write and write well.  But, too, is that what I want to write is so very ... mundane.  It is not that I started this blog to pontificate to the world.  It was a gift from a friend who thought I should write about my life.  But now ... what my life has become ... I just don't know how to write.

For example, I am trying to get two prescriptions from my doctor's office.  I had an appointment and discussed the change on one of them with my doctor.  I should have had her send it over right then and there.  But I knew I needed to check my other medications, so I told her I would send her a message with the mail order pharmacy order.

I did.
It was sent to Walmart.
I got it stopped and put back on my insurance account.
It was sent to the mail order pharmacy with an incorrect dosage.
I've been trying to stop that order for over an hour now.

I am alternately weeping my tearless anguish and battling rage at having to fight and fight and fight because people just cannot do their jobs properly.  I have been transferred all around the mail order pharmacy, at one point transferred over to my insurance company who then transferred me back to the mail order pharmacy, which put me back at the end of the queue.

My pacemaker has gone nuts.  My heart is working overtime to frighten me with palpitation antics.  I am weary in body and mind and spirit.  Lately, I have had to fight such terrible battles with medical care and they are battles that never should have come my way.

I sent a VERY clear message to my doctor, whom I KNOW remembers the conversation we had about the change to one of my medications on the 4th.  But a nurse tried to do the prescription and made a mistake because she didn't READ the message, she just clearly jumped on my chart where the local pharmacy always comes up first.  And when I finally got that straighten out and the claim taken off my insurance so that I could have it filled via the mail order pharmacy, the person who tried to send the order over clearly just looked at the name of the drug and did not READ the message that had the change.

But, lest you think that I was not clear in my message, here is how it started:


I said that I would send you a message with the prescriptions needing renewal at OptumRX. At this time, I need just two:

1. Gabapentin 600mg 3 times a day, 90-day supply, quantity 270
2. Acarbose, 50 mg, 6 times a day, 90-day supply, quantity 540

How much clearer could I get?  I even repeated the name of the pharmacy at the end of the message, along with the two drugs and their information again.

I am weary of having to follow up on EVERYTHING that I need done to ensure that it is done correctly.  There have been so very many mistakes with medical stuff, many of them prescriptions, and house stuff and utility stuff.  Those mistakes have cost me money that I simply do not have.  But they have also cost me the burden of great distress and angst and anguish as I battle to get the mistakes corrected.

For example, it took FOUR BLOOMING MONTHS to get my Internet service bill corrected after someone or some process changed my plan without consulting me.  FOUR BLOOMING MONTHS of having to pay more than I owe because if you do not pay the full amount, as I learned when I forgot to add the $1.99 fee increase into my January bill that was being paid autonomically via my bank, you get charged $9.00 late fee.  FINALLY, my June bill is the correct amount on the correct plan and I can start whittling down the credits that I fought and fought and fought to get back.  No one disputed that I was being charged wrongly, but giving customer credits is pretty much the LAST thing Frontier Communications wants to do.  I have wildly fast FIOS service, but oh did their computer system put me through the ringer.  Since the are the cheapest service available to me, since all I want is stand alone Internet, I had to stick out that FOUR BLOOMING MONTHS and fight and fight and fight to get back to where I was in December.

SIGH.

I am weary.  And I am so very sad at what is happening to my body.  I ache with sadness that sometimes overwhelms the chronic physical pain I endure daily.  I am so very sad and so very alone, the only one to face the distressing news as I go from specialist to specialist, the only one to fight those battles, the only one to ...  well ... the only one.

I am weary of worrying about money.  If not worrying, then counting out each and every penny that I am spending and trying to figure out a way to find the pennies that I need the next day, the next week, the next month.  My dear friend Becky and her husband have helped when they can, which overwhelms me.  And it grieves me as a reminder that my parents refused to help when it would barely be a blip on their financial radar.  In comparison, Becky and her beloved have sacrificially given to me in a way that sobers me and makes me think a lot about Jesus.

And then, of course, when I am devastated by my lung news and go out and buy Blue Bell ice cream, I feel guilty over spending so frivolously when I have absolutely no frivolously room in my financial life anymore.

Six months after the distressing high resolution chest CT, I got in to see a most wonderful, delightful, nerdy, attentive pulmonologist.  She promptly ordered more tests and worked me into her schedule after them.  My lung function has continued to deteriorate, although the exact reason she is not yet ready to say definitively, since if it is Sjögren's, as suspected, that's a difficult diagnosis.  For now, it is treatment and testing and testing and testing.

I have started 35 days of steroids, to shock and awe the suspected inflammation that is restricting my ability to draw in oxygen.  Then, testing.  After another week or so, I will be starting four to six months of an antibiotic that is good with inflammation stuff.  The TERRIBLE news is that I cannot take Zofran with it.  I blanched at the news.  However, since I will be taking the antibiotic Monday, Wednesday, and Friday, she said that I could try using Zofran the other days of the week.  I sank at the news of having to battle the violent waves of nausea all on my own, but I was also grateful that she was willing to see if I could take the medication on the off days.  Of course, the interaction that would happen would involve my heart.

SIGH.

The medications, thankfully, are Tier 1 and Tier 2, so one cost $4 and the long-term one I got for free via the mail order pharmacy.  The testing ... well, that will be something doable, but rather difficult to pay for with my meager funds.  I do not know if it will include the extra test she did or the primary three lung-function tests that I've had twice now.  My share of those in the fall was $44.  I have not yet been able to see what the most recent testing will cost, despite my constant stalking of the claims section of my insurance website portal.  I am hoping it will be the same and that is the number I have to work in monthly to cover the testing until my lungs improve.

I'm not thinking about what will come next if they don't.

The neurologist appointment is a whole other blog entry ... maybe two or three ... but mostly it has boiled down in the financial department into hoping rather fervently not to have a definitive diagnosis on the constant shocking in my hands, because that would be the MS flaring once more and the recommended treatment of Rebif Rebidose.  Something that has a ~$62,000 co-pay on my part, since the manufacturer does not have any assistance programs for folk on federal or state medical plans.  I simply cannot take that treatment.

If it is not definitively MS, then the recommended treatment will be immunotherapy.  There is an excellent chance that that might be covered under Part B of Medicare and, thus, be something that I could swing.  The immunotherapy has an excellent chance at helping symptoms of dysautonomia, Sjögren's, as well as the neuropathy.  I am, thus, greatly looking forward to the possibly of helpful treatment.  But, too, I am afraid of hope, especially hope on the neurological front after having been told by three neurologists in Fort Wayne that there was no help for me to be had in this city ... that I needed to go to Mayo Clinic or Cleveland Clinic.  Yeah right ... like that is going to happen.  SIGH.

Anyway, I've been counting those pennies and trying to squeeze in more medical appointments in now six weeks than I have had in six months.  The money and the exhaustion and the ups and downs of them  (mostly downs) and expenses that I overlooked, such as using more gas in a month than I have in the past three months.  All of it.  I am weary and overwhelmed and alone.

And somewhere along the line I have become a patient whose life revolves around pain as much if not more so than revolving around a host of wretched symptoms that are atypical since they stem from autonomic and/or autoimmune dysfunction.

I live with pain.
I abhor pain.
I am trying to embrace pain.
I long to speak of it.
I long to never speak of it again.

I ache.
I stab.
I throb.
I pulse.
I shock.
I burn.
I sting.
I cramp.

My nerves hurts.
My muscles hurts.
My tendons hurts.
My brain hurts.
My bowels hurts.
My viscera hurts.
My lungs hurt.
My eyes hurts.
My throat hurts.
My skin hurts.
My hair hurts.
My joints hurts.
My iliac crest hurts.

Pain is always present.
Pain is inescapable.
Pain is discrete.
Pain is ineffable.

Pain makes me miserable.
Pain makes me weaker.
Pain isolates me.
Pain makes me a stranger to my own self.

I want to die, with my entire being, at least some point each and every day.

There is little that can be done.  There is no cure.  There is no escaping what my body has in store for me, pummeling me in body, mind, and spirit each and every day.  That is my present.  That is my future.  It is brutal. And it is devastating me.

How do I talk about that?  How do I write about that?

Long lost...

I reached out to someone who was a dear friend to me when I was getting my Ph.D..  She had given me her daughter's sonogram in this most loving of cards and I had held onto for all these years.  I thought that it would be a great birthday present for her sixteenth.  Over the past twenty plus years, I have prayed over that small photo and often wondered how my friend was.

I do not remember how or why it is that we are no longer friends.  I do not remember her at all.  I do not remember our friendship.  I remember facts about her ... a few.  She was absolutely a kindred spirit in a literary fashion.  She was also the cool kid on the playground I never dreamed would be my friend.  I think, though I am not sure, she was a master's student whilst I was in the doctoral program. Perhaps I am wrong.  In any case, she holds her doctorate now.

When I got out the card to pray for her and her daughter, I thought to Google her.  The first hit was her profile page at her college with her email right smack at the top of the page.  In bold.  In blue.  Almost pulsating on the page.

I finally worked up the courage to click on the link.
Girding my loins is exhausting these days.

She sent me her address so that I could return the sonogram and said she would like to catch up some time.  As my dear friends know, being my friend is not exactly easy these days.  Celia gifted me with a FaceTime call tonight and I wasted the few precious minutes with her talking about medical stuff.  SIGH.  If not medical woes, then financial ones.  If not that, then my talk is filled with cooking and recipes and ingredients and culinary dreams.  If you are not into cooking, I can be extremely boring.  And, if not cooking, I am most ridiculous about my beloved Fluffernutter. Seven years on I remain amazed at just how attentive and comforting he can be ... when he's not too busy being a RAT BASTARD.

Still, even though I was quite clear that I am not friend material and I cannot remember anything of our friendship, I did give her my phone number (and hint about how much I like texting) and my Facebook identity.  I didn't hold out any hope she'd want to connect once more.

My old friend immediately friended me.  Fear and trepidation followed at her discovering just how weak and weary I have become.  And yet she also warmed the cockles of my heart.

Should she really want to catch up, I offered my B&B.  You see, my old friend is just three hours away from me.  She could visit, perhaps, if she wanted.  Will she?

I think it would be immensely difficult if she chose to visit because I have no memory.  I moved away from Becky and we are dear friends.  Mary and Celia I met "online" and are far away from me (though Celia actually moved closer), but both are dear friends.  All three women are true kindred spirits and amaze me anew each day that we are friends.

I do not remember them.  Mary and I have been friends for year now, but to me I have this sense I just met her.  She's visited three times.  Or is it four?  I only have photos of one visit, so I think of that one.  But then she had just two children.  Now she has six.  That alone speaks of a lengthy friendship, but I remember it not.

I am like a little kid these days.  Tell me a story.  Tell me a story of me.  Tell me a story of us.  Tell me a story so that I can know we are truly friends.  I work really, really, really hard not to ask, but I long to do so with everyone.

My friend Caryl, whom I met in the course of working, recently mentioned that we've been friends for twenty years.  Not quite, it turns out, but close.  NO BLOOMING WAY!  She started to mention a work road trip we took once and I immediately wanted to say, "Tell me that story."  But I didn't.

So, how would it be to reconnect with a long lost friend whom you do not even remember?  I think I would just make things ever too awkward for her.  But ... but ... but I still hope we might could find our way back to being friends.  That would warm the cockles of my lonely heart.

And my cockles could use some warming.

Side effects...

Oh, my!  Is the pilocarpine throwing me for a loop!  This is the medication to try and increase saliva to help with the Sicca Syndrome in my mouth and throat that is a result of Sjögren's Syndrome.  Sicca is the dryness.

Sicca in my eyes.
Sicca in my mouth.
Sicca in my throat.
Sicca in my sinuses.
Sicca in my skin.
Sicca in my lips.

Fun times.

Because of several adverse side effects, you start the medication at a tiny fraction of the end dose.  The first two weeks were not that difficult for me.  However, Week Three has not been going well.  I am insanely dizzy, where I often find myself listing or the world listing or both.  I am also insanely tired.  I fall asleep at the drop of the hat and have to actively work at staying awake.  I even started falling asleep on the treadmill!  Like I said ... insane.

The third side effect, abdominal pain, has been more mild. However, when you are struck with a bout of pain that caused you to curve inward to stand against it, the pain is still disturbing.  It disturbs my body.  And it disturbs my mind.

It is no secret that I am deeply torn about this drug.  The monthly cost of it is not really sustainable for me.  However, this is for the Sicca in my mouth.  I've already had three cavities.  Me!  And I just read another post in the support group from someone who's now lost all her teeth. This woman lost all hers in a year!  Such sobering tales of dental suffering I read.

So, whilst I want to all ready quit the medication for how difficult it is being on it and the cost of it, I want my teeth to stay in my head!

The thing about dysautonomia, medication becomes this rather strange world in your life.  So often, you are taking medication for its side effects.  Then, because you are often on lots of medications, you have to worry about how the medications side effects will work together.  Then, like now and with the duloxetine, you have medications that you want to take for what they do, but their side effects prevent you from doing so.  SIGH.

The battle the past few days has me questioning my own sanity.   Why would you want to put yourself through this, Myrtle?  But riding the side effects roller coaster is part and parcel to living with chronic, incurable illnesses.

Still, I've been mighty ill since Thursday.
SIGH.

Structure...

I have been working to have some structure ... some routine in my world.  I mean, I do most everything with a process, a routine, if you will, so that I know that it will be done correctly, so that I will not miss important steps, so that I will have some success.

It is hard for me when folk visit who do not understand how the processes help me get through what I need to do.  I struggle with forgetting so deeply that I have to have a set way of doing things that I can follow.  When others distract me from my process, I make mistakes.  And mistakes make me agitated.  And I forget more.  And things just fall to pieces.  I fall to pieces.

I do worry about being seen as OCD, because I've heard a few jokes about that.  Only my therapist has assured me that what I am doing is I am coping with my deficits, not trapped in mental illness.  Fearing that another routine is just going to send me further up the river, I nevertheless have chosen structure for every other Friday.

On most Fridays, I run the dishwasher.  However, I only run it if it has a full load.  Sometimes it takes more than a week to fill it up.  And, on Fridays, I am following my goal of being a more responsible pet and homeowner by keeping the yard cleaner than I had been doing.  So, those two tasks get done whether or not it is my newish Friday.

Every other week, I now strip the bedding and remake it.  That is such a gargantuan effort for me, one I realized that I was taking longer and longer and longer to get around to doing.  Now, I know I have fresh sheets at least every other week.  I would like them every week, but fresh sheets also means laundry and laundry is difficult for me.

On these Fridays, I also do the laundry on account of the aforementioned dirty sheets.  I work hard to collect everything possible that needs washing, including the hand towels I so oft forget.  I sort it and do between two and four loads, usually two of them.  This way, I have fresh sheets and my pile of laundry is gone.  By having this structure, I know that I will have the things I long for at least every other week.

There are small ways that I am trying to build some structure into my life, but, of course, I cannot think of them at the moment and I did resolve not to leave my entries hanging  for days and weeks trying to finish them.

Suffice it to say, I like knowing that I have a plan for those Friday nights.

In the winter, I try to exercise early so that I can shower early so that I can spend the evening (when not doing laundry) roasting before the fire.  I find the time rather peaceful, knowing that I am ... well ... being normal for a time, getting something done, and getting it done in a time and manner of my choosing.

And there is something sort of safe about structure.  Comforting.  Knowing it will be there no matter how things are going.  SIGH.

A before and after...

I did a Spring Cleaning in my home, in part because it needed it and in part to see just what it would take to do it all within a short enough time that I could enjoy cleanliness all at once.  It was a gargantuan effort.  But I have thoroughly enjoyed, these past few days, having a fully clean home.  Usually, everywhere I look I am reminded of how poorly I keep house now.  Or I am reminded of how strongly my vision is being affected by my illness.  But, right now, for the moment, all I see is a clean and lovely home.

I also have a full larder ... well, almost full.  Yesterday, I made another batch of Chilorio and one of Peruvian Pork Stew with Chilis, Lime, and Apples.  Good times with pork!  I remembered to use the new fan my sister got me last year (I oft forget), and so the effort was peaceful and cool for me.  I was able to clean as I went, so I did not end with a massive amount of dish labor.  Plus, I thought to take a before and after photo of the stew!

Wait!  How could that be stew?

Through the magic of cast iron!


Afterwards, I wrote the following on Facebook:


One of the great blessings I've had in falling ill is the necessity of learning to cook so that I can avoid those hard-to-digest unpronounceables in processed food.

Meal options from my freezer now:

Spicy Dr Pepper Pulled Pork
Chilorio
Peruvian Pork Stew with Chiles, Lime, and Apple
Pomegranate Pulled Pork
Spicy Corn Chowder
Chipotle Chicken Chili
Black-Eyed Pea Medley
Beef Stew with Beer
Lemon Chicken (for gyros)
Vietnamese Chicken Curry
Santa Fe Soup
Sun-dried Tomato Chicken Meatballs
Homegrown Tomato Sauce
Butternut Squash Ravioli (commercial)

I also have naan, gyro, and Texas flour tortilla dough balls and vegetable stock.

My goal is to add Chicken Tikka Masala and Shish Tawook with Lebanese Rice Pilaf. The former I've made. The latter is the next new recipe that I am gearing up to try.

It it is nice to have good things in the midst of less than good.

I am of two minds about the appointment today with the podiatrist.  Mostly, I feel that it was a waste of time because I do not believe that she was listening to me.  Her treatment plan is: inserts, good shoes, stretching, and ice.  I've already done stretching, ice, and good shoes.  I just cannot see how adding inserts is going to help.  Maybe in prevention, but how can inserts reduce inflammation??

The hard part was that I was nervous and talked too much and then very nearly keeled over.  She was having me walk around the round.  Around and around and around.  I avoid morning appointments because I faint more in the mornings.  This was a cancelation that got me in nearly two months quicker.  However, there I was, going down.  I did end up flat on the floor trying to avoid the practically inevitable.

My pacemaker went off and I had that pressure in my neck, but still I kept walking.  Trying to be the compliant patient.  Being a rather foolish patient.  I did try to say that I needed to get down.  She thought I said "sit down" and guided me back to the chair.  I slid to the floor, eventually, and got my feet up.  I was feeling rather awful, but still tried to push through.

I did feel as if there was a concerted effort to get me gone.  I had brought my shoes with me and so needed to put them all back into my backpack.  With no other recourse, I was standing as I did so.  Standing after a near-faint.  I started feeling the pre-syncope coming on again.  I was left alone to make my way back to the waiting room and took a very, very, very long time to trudge back there.  Reception took once look at me and ordered a wheelchair, took me to valet parking (which I had not realized was there), and got the man to fetch my car even though I was the one who had parked it.

I was not scheduled for a follow up, so I am still wondering what was the point of the visit.  She did mention, before I went down, that if the pain continued I could have a shot in my heel.  I am trying to decide if I should write my GP a message to ask if she could communicate that I had already been following the treatment plan or try to write that message myself ... or wait three weeks until I see my GP next.

Filled with disappointment, though already seeing how the inserts could be of value, I went to get my blood work done.  I had to wait about a half hour in reception there, but I laid down after about five minutes.  The extended rest helped me.

What was most lovely about the lab visit was two-fold:  1) the stick was amazing, almost undetectable and 2) my blood flowed extremely quickly from my hand.  Normally, it flows slowly, which is why asking for a hand-stick usually nets quite a bit of resistance to the request.  But, this time, the vials were filled so quickly I was in a bit of disbelief.

What is not lovely is that some of the results have already been posted.  And my kidney function, despite reducing the Celebrex in order to better my kidney function in preparation for having the dye needed in a contrast MRI.  I am not looking forward to how my GP receives the results.  At least one question was answered though:  dropping the Celebrex by a third was not nearly enough to ready for an MRI.  Not by a long-shot.

I try very hard not to think about the poor kidney function too much ... what that really means for me now.  What it could mean later.

For the record, the doctor said that Sjögren's can definitely affect plantar fasciitis.  That's what I'm blaming for this new wretchedness determined to stay with me.

I think about the before and after of Sjögren's in my life quite a bit.  I feel as if few in my life are listening when I try to talk about it.  Such an extraordinary change in such a relatively short period of time.  It is a before and after that boggles my mind.  And troubles my soul.

Triggered...

Sometimes, I think that I will never get back to my blog the way that I long to do so.  It has been a part of my life since a time when most folk didn't even know what the word "blog" was.  I am just so bloody overwhelmed that it is hard to do most everything.

I am reeling from what I think maybe I should call death by a thousand cuts because I keep getting less than good medical news, which means less than good financial news.  And I am still flattened by the realization of what my parents think of and about me.

So, I stumble through every moment and always fail to gather myself enough to write the way that I long to do so.  But.  But maybe I should try to just write.  As in, write what I can and post even if it is unfinished or error-filled or just not what it is that I set out to say.

I am losing my hair.  I laugh, bitterly, at the vague memory of all the early posts where my hair was falling out.  I raged at the hair in my hands.  I huddled in the corner of the shower (not that my shower had corners since it was in a bathtub).  I wailed to the world.  Now, I just cannot cobble together the words.

I washed my hair tonight.
This came away in my hands.

If you know me, then you know what this means to me.  No, wait.  You know a tiny fraction of what this means to me, of what my hair means and has meant to me.  So, you can begin to grasp the loss.  But there really are no words.

However, this isn't really what I meant to write or rather what I long to write.  To record.  To capture. To work through in the one way I truly know how to work through something.  To write.

I am triggered.

There I was, watching this seemingly non-triggering show and I realized that my entire being was trembling.  I was fighting an overwhelming urge to go shove myself into the corner of the closet upstairs because of the certainty that bad things were happening.  Now.

I do not know what triggered me or what it is that I am struggling not to relive.  Or reliving and struggling not to remain aware for the experience.  I could maybe try to ask myself questions, as if I were in therapy.  But I am not, actually, in therapy.  I am frozen to the corner of my sofa, cold and stiff with terror.  My pacemaker is going off willy nilly, not giving me a break because my body and mind are raging against one another.  Or maybe they are each trying to pull away, but have chosen different directions.

I don't know.
I don't know what is wrong.
And I don't know what is right.

I don't know what I want, other than for what is happening to me in this very moment to stop.  It it too late to call either Becky or Mary.  It is too hidden for me to try to help myself (not that I am even remotely in a place where I could help myself).

I am trying to at least capture this moment, but my body is now fighting me.  My eyes hurt so badly that I find myself closing them tightly against the pain.  In turn, this is causing a deafening roar in my ears from the tensor tympani muscle contracting.  I keep searching for the train that is not coming, yet my body knows is nearly upon me.

What a sound that only I can hear!

At least the thought is a momentary distraction, a spate of time in which I am divorced from what my triggered self is doing, is experiencing.  SIGH.

Less and less...

Watching television shows and movies has become harder and harder for me.  I cannot tolerate ones that make me anxious or drag me down into darkness.  I am weary of criminal shows where the bad guy is a masterful psychopath constantly outsmarting everyone else, including the ones who have either hacked the authorities or have moles working for them.

I am also weary of shows where the storyline has sex peppered throughout.  For example, I tried watching the new show "Station 19," a spin-off from "Grey's Anatomy."  Where I like "Chicago Fire," even with its heavy dose of interpersonal relationships and light treatment of calls out in the community, "Station 19" had but a fraction of firehouse calls and a suffocating dose of interpersonal relationships, including sex.

Gosh, "Grey's Anatomy" has you believing that half the activity in a hospital is sex.  Talking about sex.  Before sex.  Having sex.  After sex.  You do get some good medicine in there, but the promiscuity and cheating that goes on is appalling.  I just do not think that hospital culture is truly that lewd and salacious.

Why is it that there are not more shows like "Blue Bloods," a show rife with interpersonal relationships but where sex just isn't a factor.  The rest of life is.

I want a story, not a distraction.  And I want a realistic story, unless I'm watching science fiction.  I want a beginning, middle, and end.  I want thoughtfulness.  I want workplace integrity.  I want a realistic look at the lives of those involved outside of the story.  And I want bad guys who are not exceptionally brilliant psychopaths.

Is that too much?

I have enjoyed "Marvel's Agents of S.h.i.e.l.d," but the ongoing torture of the team is just a bit much. I glimpsed a bit of a review of this past episode and have, thus, not watched it.  Poor Fitz ... I hear he gets broken.  I just do not want to watch that.

I do like shows that explore how broken people function or how broken people heal.  But I need to be in the right headspace to watch the breaking.  And I'm not there.  Nor do I want to go there anymore.  I want to finish the story of S.h.i.e.l.d., but I do not think that I can endure it.

"Fringe" ... now there was a show where team members went through the ringer at times and when the world seemed lost.  But the show's writing team never left you in true despair.  I miss "Fringe."

And "Lethal Weapon."  The brilliance of that show is that a viewer could almost just stick with the slick and skip the interpersonal development.  But a viewer can also savor a continual journey from an abusive past and adult loss to creating safety and building family.  As far as storylines goes, Fox offers a hauntingly beautiful pathos in this action-flick-turned-television-series.  Just brilliant ... at least it is to me.

More and more, I find myself retreating to older shows or British, Irish, Australian, Scottish, or Canadian ones.  Whenever I feel a disturbing angst beginning to well within me, I jump online to read a recap or movie synopsis to see if I am being led down a path from which I might not return.  If so, I stop watching.  That is a marvel and a sadness to me.  I stop watching.

I stop because I have become so very weak.
Weak and weary.
In body.  In mind.  In spirit.

So as lonely as I am and as much need have I for distraction from bodily wretchedness, I often choose silence over streaming.

You know, what is needed is a streaming service that is for the weak and weary.  That would be great.  Heck, I'd subscribe.  And I bet a lot of folk in the support groups online would welcome the same.

A bit of structure...

You know, I really like Marvel's Agents of S.H.I.E.L.D., but the writers are really pushing the envelope of believability.  I mean, gee, you don't bring alien tech back to your stronghold.  Period.  And if you are going into a place that magnifies your fears, you don't listen to the first guy you see who is supposed to be dead and who admits to being a figment of your imagination (fear).  YOU SHOOT THE GUY ON FIRST SIGHT!

I sometimes think of writing and how much I miss it and how much I ache for not doing what I wanted to do, not being what I wanted to be, whenever I watch television shows or movies.  The good.  The bad.  I often think about the writing, the story, as much as I do anything else.

And then, of course, I think about the story of my life.  It is one that saddens me greatly.  SIGH.

I have been working on a bit of structure in my life, so every other Friday, I have started changing my sheets.  I'd like them changed every week.  Heck, if I were wealthy, I'd have them changed daily.  Fresh sheets are such a pleasure.  Anyway, changing the bedding is rather arduous for me, terribly difficult and draining.  Still, I wanted to establish a routine of sorts to ensure that I have fresh sheets at least every two weeks.

It is isn't just fresh sheets every two weeks.  I have been doing the laundry that day, usually one load of my things and one of the bedding.  Up and down the stairs is wearying.  Bending over the machines is wearying.  Hanging the laundry is wearying.  Folding the laundry is wearying.  Still, I like having a routine.

I try to torture myself early, so that I can get to the chores earlier in the day.  First exercise then I cool down.  After that I change the bedding out, which is as exhausting as exercising.  Next comes a shower, which is also exhausting.  Then, my sweaty exercise clothing is added to my laundry pile and I cart the overflowing basket downstairs.  Yes, you guessed it.  Doing that is exhausting.  Really, all this structure is exceedingly exhausting!

But, then, before I take the laundry down another flight of stairs, I lay a fire.  This involves getting a fire starter out of the deacon's bench.  The deacon's bench, which serves as my downstairs closet, that has a terribly heavy lid and requires that I bend over as I open it.  Bending over makes me faint unless I am very, very, very careful.  [NOTE:  It is hard to be very, very, very careful when one is already exhausted.]   Then, I put all the kindling into the fireplace and set my fire starter in the center of it with a fire stick (Firewood Man cuts 1.5-2 inch pieces of wood for me to use to start my fires) right above it.  Next, I fetch a load of wood that is smaller pieces, so that the fire will start easily.  I stack those above the kindling on the andirons.  Finally, I fetch a second load of wood that is comprised of larger pieces of wood that will burn well once the fire has been going for a while.

Fire laying is exhausting.

I do that before I go downstairs to start the laundry, because I can get an impressive fire in just a couple of minutes.  If I light the fire before I go downstairs, then I come back upstairs to a roaring fire and sofas inviting me to rest.

After that, my DO SOMETHING has mostly ended.  I make myself a meal, having usually planned for something that is the shortest amount of preparing time, such as black-eyed peas medley, beef stew with beer, or spicy corn chowder.  And I collapse on the sofa, with my only goal for the rest of the evening is to keep remembering that I am doing laundry so that I can get it done save for folding the things that will be air-drying overnight.  My goal has been to collapse on said sofa by 7:00 PM or there abouts so that I can have a good, long fire.

Going to bed on Friday nights is heavenly, for I am sliding between fresh sheets.  And I have had an evening of fires (as long as it is cold ... which it has been since I started this structure plan).  And I have had an evening of snuggling Amos, guilt free, having done the work of changing my bedding and doing my laundry.

So, my Fridays are nothing special on the outside, but they have become a real blessing to me with the structure and soothing fire (and snuggling) that takes place.

* * * *

Golly Gee Wilikers!  That simple entry in my online rememberer has taken me FOUR DARN DAYS to write.  I absolutely HATE what a slog fest trying to use my brain has become!  ARGH.

I am missing so darn much of my life these days.  I want to have something recording this time since I won't remember it.  But I am at a loss as how to do so with how hard writing has become now.  SIGH.

Places...

At the risk of sounding oh so repetitive, I have been struggling ever so much.  There is just ... too much ... to endure right now.  As a result, I think, I have been on a bit of a tear around my house doing what I think might be best termed "micro-organizing/downsizing."

For several years now, I have been working on down-sizing my stuff.  In doing so, I discovered, as I have written before, the value of visual rest to me.  Chaos distresses me, and that includes the chaos of mess and the chaos of clutter.  When things are neat and straight and less, I am calmer.

Every night, before I got to bed, the last thing I do is straighten up the first floor.  I used to try have all the dishes done from the day, but I am, more and more often, too weary or too ill to do so.  When that is the case, I work to at least stack the dishes in the sink and clean the counters.  If dishes are still drying throughout the night, I put them away on one of my trips to fetch ice packs, so when I start my day, eventually, I start with a clean slate in the kitchen and elsewhere.

If you have less stuff, it is easier to straighten up.
If you have less stuff, it is easier to maintain a visually restful environment.
If you have less stuff, it is easier to achieve "a place for everything and everything in its place."

Distressed beyond words or even sensibility, I cleaned out a drawer and two small antique wooden boxes.  I've been through them before, but, over time, all organization and down-sizing needs to be repeated.  I've also not been at thorough as I could be, not carefully looking at every single thing in those locations.  I did that, finding things that had been given places since my last time round in this process.

One of the things that I found were business cards.  I seemed to have accumulated stashes of business cards in several locations instead of in one "place."  I collected them all together and put them into a binder that I had in the basement, one with business card holder pages.  But I also went through the pages I already had and organized them.  I came up with seven categories and created title pages for each, which I color-coded and then put into top-loading sheet protectors as dividers.  Since then, when I've discovered a business card that I wanted to keep, I've had a place to put it.

Since then, too, every time I've started to become overwhelmed with distress, if possible, I've looked for something to micro-organize/downsize.

I've also been tending to things put off.  For example, I've found three things long in need of gluing.  Is it even possible to use superglue without gluing your fingers together?  I have replaced batteries.  I have added labels.  And I have needed to do some sewing, especially on a pair of bike shorts that I wear when torturing myself on the treadmill for a few weeks now.  I also have had a scrunchie that needed sewing years ago.  Now it is tended to as well.

Of course, sewing meant that I took the opportunity to clean out my grandmother's sewing kit, something I've never done.  There was so much ... debris ... in the bottom of it.  However, I now have it all organized and clean and have a place for everything in it.

I've been through the bathroom cabinet and the two glove drawers (which I use for other things) on my grandmother's dresser.  I've cleaned out the top drawer in the servant's closet, which meant that I also fetched a few things that were out of place elsewhere and put them where they belong.

It is hard to really explain, but life has been a bit ... slower ... because I keep pausing whatever I am doing to put things in their place or to downsize or both.  Or I am tended to things long neglected.

When organizing, it is far too easy to have things that you simply leave in place for no other reason that you have no idea what to do with them. I would argue that that is a good practice.  You do not want to have anything stopping you from getting started or from finishing.  Only it is good practice to eventually get to the things that you skipped the first, second, or even third time round.  Gosh, I think I might be on my fifth or sixth time through my house, but I am actually thankful to have such organizing and downsizing labor for me, even if it is one thing in each place.

I often think of my dear friend Becky going through my house after I have died, for I very much intended to die here.  I think of her having to decide what to do with my stuff and want that process to be as easy as possible.  Sure, I am most certain she shall snicker at what she finds, but I am confident that were she to go looking for something whilst she is here, that Becky would be able to find it.  I have tried to be logical, for the most part, about my places. And I have also, in each peeling off the layer the proverbial onion that is organizing/downsizing, found stuff that I realized I no longer need.  Or is it want?  The line between needs and wants seem to get blurred when it comes to examining our stuff.

Mostly, I figure she'll gather up all my clothes, bedding, toweling, kitchen items, food, and office supplies and donate them.  And, hopefully, do the same with my books.  She'll toss out all my dissertation stuff that I just haven't been able to toss myself.  And, I figure, toss out all the stuff in my utility closet and garage, other than what can be donated there.

Then there are all my ... stuff ... that is merely decorative, such as my vintage camera collection, the small mementoes from my few travels, the bits and pieces of family history, my rocks and minerals collection, etc.  You know, the stuff that fills the void of memory for me and serves as reminders of memory for most folk.  In close knit families, there would be loved ones who might want those things, but in our isolated, fragmented family, there is little anyone would want.  Mostly, there are a few pieces of furniture and my father's clock that my sister would like.  Also, she would like the pieces of jewelry that are from my family.

It is hard, for me, to think that I have no one to pass on to the things that have meaning to me.  No one who will cherish the antiques I have the way that I have, who will appreciate their history and think of the lives they have ... witnessed, if you will.  SIGH.

Alas, I should not think of this, for it is just more distress upon me, adds to my loneliness.  What soothes me is that, in the past few weeks, my home has become more organized and less.  It is a splendid thing when even opening a drawer provides you visual rest!

The seemingly impossible...

ARGH!  If only someone could help me keep up with my online rememberer!

I absolutely understand why it is that all of my favorite folk-with-dysautonomia blogs just stopped.  Life gets so very hard and writing about it ... well, who wants to read my misery? fills your mind when you try.  That or brain fog blocks the way.

So, I wanted to back-date and cover the crux of more-bad-news-as-it-happened.  But that is simply not going to happen.  I mean, I cannot get to writing about February 7th and March is nearly here!  SIGH.

Bottom line:  I went to my dentist appointment expecting a little twitting about my ardent love of baking soda toothpaste as the worst to happen.  Unfortunately, that is not what happened.  What happened was that I was told I had three cavities.  I was so shocked that I couldn't find two words to put together and my inability to weep the tears spilling from my soul over just what Sjögren's is doing to my body.  And so soon!

Of course, the other thing coursing through my body was fear.  Not fear of the impending dental work.  Fear of what it will cost.  I was right to be afraid.

Even with a $50 discount card that will then provide discounts on everything for a year, the work will cost $693, for a total of $743.  It might as well be $7,430 or $74,300 as far as I am concerned.  SIGH.

I have spent days and days and days trying to figure out how to pay for this work.  Because there is no question about doing so.  One of the cavities is so bad that I am in danger of having to go straight to a crown ... not that I really understand what that even means.  I'm the good-teeth member of my family.  That one ... infected?? ... the tooth next to it.  The third is encroaching on a fourth tooth.  SIGH.

I haven't just been trying to figure out how to pay for three fillings.  Sjögren's patients usually see a dentist four times a year.  I knew this, but I truly thought that I had more time before it would be affecting my teeth.  After all, I use baking soda toothpaste.  Oh, yes, my teeth were "impressively" clean.  It is just that all of my cavities are between my teeth.  You cannot brush there.

I asked the dentist if I did this to myself because I am just not a flosser.  Flossing, she told me, might have helped, but what I was experiencing was classic Sjögren's.  Oh, I can step up my dental game, but I also have to be prepared for the inevitable: the likely need for dentures.  SIGH.

I am now brushing my teeth four times a day, flossing two times a day, and using a specific Sjögren's-friendly mouth wash twice a day.  I am also already scheduled to start seeing the dentist every six months.  She said she thought I might could get by with two visits a year instead of four since I have been clearly assiduous about my teeth care.

So, I am in need of paying for two visits and a set of x-rays every year as well.
And $743 for fillings.

I am still not sure how I will get everything paid for, especially this year, but I am ... humbled by incredibly generous help from my very dear friend Becky and some from my sister.  I have my dental debt whittled down to $449.  I also worked out what I needed annually and set up yet another monthly automatic savings account and back-filled it for January.  Today is the day all of my savings accounts pull funds.

I was sort of proud of myself for finally working through my shock and fear and upsettedness to figure out what I needed to save.  Then I searched and searched and searched for how to absorb that $35 a month.  Sadly, though, my sister pointed out that I would need to be saving more for my next filling.  Dang it!  She's right, though. I am very thankful for her observation.  More math later, I figured out that I need to be saving at least $66 a month.  That's well and good, but there is no possible way, at all, to jump to that amount until December.  And, really, January is more likely given that December is the month of Christmas.

I will say that I was quite despairing until the news of the help.  The balance left is still overwhelming, seemingly impossible, but God has certainly provided help thus far in a very unexpected way.  And, like I said, humbling.  I am still grieving over my parents rejection of my request for help.

For now, I am trying very hard (and not yet succeeding) to not worry about the impending dental work on Wednesday.  I am not afraid of the dentist.  I am not afraid of the work.  I am afraid of the shot.  Shots actually.  Three of them.  My nerves do not take kindly to be disturbed in any fashion.  I no longer can have a shot in my right arm.  Or, to put it another way, I abjectly refuse to have one.  Four times now, after a shot, I have had terrible pain and numbness along my entire arm for weeks and weeks after a shot.  And the nerves along my pacemaker incision took long past a year to recover.  I am deeply worried that the nerves in my mouth might respond poorly to the shots.

But, of course, there is nothing I can do about it.
If it happens, I can only endure.
And endure.

The work commences at 10:00 AM on Wednesday morning.  Should you believe in prayer, I would deeply appreciate the covering.

SIGH.