Wednesday, November 30, 2016

Another day...

My appointment went much, much better than I thought it would.  Last night, I was up all night worrying.  SIGH.

What I like most is that we have a plan.  Actually, we have two plans.  As for the hormones, I will continue them for two more years and then stop them again to see if I am in menopause.  I am already concerned about stopping them again, but I understand the need for such action.  The specialist reassured me that since I re-started them within 24 hours of starting my period that I shouldn't have another one.  I had worried about that.

The pain.

We talked about the reconstructive surgery again.  I understand that my nerve malfunction is a problem.  My doctor bluntly said she thought I could have lifetime pain from it.  Still, not having a repair is becoming more difficult for me.  So, she brought up her alternative once more:  physical therapy to try and build up the muscles around the damage.  Uhm... no thanks.  Then, at the end of the appointment, she brought up the use of a support device.  She is concerned that I would find it too painful, and I would need testing first.  If I am a candidate and IF the device seems helpful, it would mean an initial four visits with her.  Four times of nakedness.  An impossibility and yet I liked the idea of a support device for my female innards.

So, I have an appointment in six months for the testing.  I have the option to moving that appointment up, say about four months.  The time period is to help me wrap my mind around the exam and tests and whatnot and for me to save for those four appointments.

I had an asthma attack whilst I was at my appointment.  I really, really, really loath the attacks that seemingly come out of the blue.  I tried drinking water when the coughing started, but it eventually became too much.  So, I used my emergency inhaler.  I was immensely thankful for my (now old) pharmacist Kaitlyn, who spent time teaching me how to use the inhaler since I left the hospital without such.  This time, when I used the inhaler, I could feel its effects rather quickly.  And the coughing and wheezing were halted before I reached that point of no return.

As much as I did not want to suffer thorough the experience of prescriptions at Walmart, the two I get on GoodRX are even cheaper there.  So, after I finally left the doctor's office, I went to fetch prescriptions and some groceries.  It was an agonizingly long process, but the prescription savings were so great that I got 90 Benzonatate pills and the hormones for the same cost as what only 30 pills and hormones would be at Target.

I remember the ingredients for Vietnamese Chicken Curry with Sweet Potatoes.  I had completely forgotten just how tasty this dish is!

Today (last night really), I finished up the seasoning of my cast iron pans.  I have not done well in that department and I have not done well as a cast iron pan owner.  My 12-inch and 6-inch pans were used and the 12-inch was coated in rust.  I finally found this really great article on seasoning cast iron. It made sense to me and was clear in the process.

The process, after you get the pans prepped (I didn't do as great a job at that as I could have) and oiled, is to bake for one hour then cool in the unopened oven for two more hours.  Then oil and  repeat.  Five times.  Yes, five!

The end result is clearly worth the time and effort!  After the second round, it is easy to look at your pans and feel as if you are not accomplishing anything.  After the third round, hope blossoms.  After the fourth, impatience abounds.  After the fight, culinary giddiness.

It's been a long, long, long day, but it was a day of positives.

Tuesday, November 29, 2016


On day 36 of no hormones, I started my period and learned exactly why it was that cycles came up so often on dysautonomia forums.  Dysautonomia exacerbates things and its accompanying neuropathy magnifies pain.  For a while there, I honestly doubted I would get through the moments before me.  Having another migraine did not help.

All thoughts of saving money by being off the hormones went flying.  I became rather desperate to start them again and wonder what brand I can find after the last two I was one were discontinued.  fortunately, I still have six weeks worth, so I started them on Friday after trying to reach the specialist who manages them for me.

I just don't see how I can face such pain again.

The refrigerator was delivered yesterday.  Coming early was a pleasant surprise and it has many upgrades over the earlier model that I very much prefer.  The lighting is fantastic and the ice cubes are not those skinny rectangles that melt faster than you can finish a drink.  No, instead they are actual cubes!  Well, trapezoids really.  It also rolls around quite easily.  I couldn't move the old refrigerator unless it was empty.

However it's making a fan spinning sort of noise.

I see the specialist on the morrow, so I am not sure what she'll say.  One of her nurses sent a note today asking me to hold off starting the hormones back, but I had already done so, of course.  Being a wimp about the pain.  Being terrified of it coming again.  I know my GP doesn't want me on them, though she has not explained why.  I know that my age is changing the equation.  But the pain....

A while ago, I watched this video on Chronic Pain Management in Dysautonomia by Dr. Paola Sandroni, who is the head of the autonomic clinic at Mayo Clinic. Something that she quipped has stuck with me, "Don't cut!"

For years, I have been going back and forth over having the specialist repair internal damage from sexual abuse.  That comment—almost an aside—has stuck with me ... like glue!  I started thinking about how much difficulty I have had from the pacemaker incision.  A year later and it still hurts.  A year later and it still itches like nobody's business. I often wish for it to be cut out just to stop the itching.

Whilst I was writhing in pelvic pain, abdominal pain, and migraine pain, I was desperate and thought that maybe I should at least have a hysterectomy to keep this from happening again and to be off the hormones.  But when the pain began to ease, I and realized why Dr. Sandroni was saying that cutting is not the answer to pain.  I started thinking about just how many nerves would be cut in reconstructive surgery or even a hysterectomy and I became overwhelmed with just how much dysautonomia affected every blasted facet of my life.  SIGH.

A part of me is curious about the appointment on the morrow and the rest of me is just terrified.  It wasn't just the unbelievable cramps.  It was feeling as if I was being stabbed internally for days on end.  I just cannot go through that again.  I am barely through it right now.

In a way, the early delivery of the new refrigerator with all the work of moving all my food out of the old one and then all of that back into the new one, as well as carting up the food I had put in the basement when things started freezing in my refrigerator and carting out all the packaging to the trash ... well ... the exhaustion was a good distraction.

Just think.  In twelve hours, I'll know what the plan is for me.  For the pain.


Monday, November 21, 2016


I was such a mess when Amos was at his worst.  It was not that he was vomiting everywhere, but that he kept vomiting.  Neither he nor I slept.  I am 99.99% sure it was the Benadryl, which is good in that he stopped vomiting when I stopped it, but it is not good in that Benadryl is an important and useful medicine.

It was hard to see Amos' skin so very red, but he is strikingly better after four days on the allergy medicine that the vet gave him (the very non-economical allergy medicine).  His skin is normal color, his fever is gone, and all but two of the spots he chewed have peach fuzz growing on them.  The two worst spots on his backside are bare skin, but the skin is almost healed.  I am very, very, very relieved.

Friday and Saturday, Amos mostly slept.  He was up all night Wednesday vomiting, so he was tuckered out.  But I guess being all inflamed made him exhausted, too.  Today, he is back to his perky, sneaky, cuddling self.  And his appetite has fully returned.  You know Amos is in a bad way when he is not interested in his food.  Friday morning, when he didn't finish his breakfast, I was scared.  Now, though, he is back to his 30 second scarf job.

I am bothered that this is the fourth illness of Amos since May.  Three fevers in such a short time when my other dog never had a one.  His vet said that he could be immunocompromised, especially since he went through such a vicious trauma when he was so little.  Amos is getting his teeth cleaned in February, and his vet requires a full blood panel before anesthesia.  I would much rather that happen now, but I don't want to pay for it twice given that I just bought another refrigerator!  However, I worry.

The blood work will look at his blood cell counts, liver function, kidney function, and pancreas function.  With Amos being so much better today, as opposed to how ill he was on Wednesday night, I am worried less.  However, I am looking forward to his blood work.  I want to know that there is nothing long-term wrong with Amos.

Yes, I am such a worrywart where my beloved Fluffernutter is concerned.

Friday, November 18, 2016


Something I find difficult to explain is how fragile I am emotionally.  It is the same with heat.  I say that it is too hot for me, and I am most often immediately corrected.  With temperature dysregulation, any temperature can be too hot.  The other day, I found myself sweating profusely whilst it was 60 degrees in my house.  Sixty degrees can leave me huddled beneath a pile of blankets shivering in misery.  Sixty degrees can leave me drowning in sweat.  

I am not saying that I have emotional dysregulation, but I am saying that I know how fragile I am.  And I often do not watch or read or even listen to some things because of how I feel.  Sometimes, whilst watching or reading or even listening to something, if I feel my balance slipping, I stop.  I often end up Googling for synopses, to see where the story might go, to see if I might handle it.  

For a while now, I have been primarily re-reading, finding safety in stories I know.  And re-watching. Seeking safety in the familiar.  I do try new shows, but I have given myself permission to abandon them when I am struggling.  When I sit and think about that, it discourages me.  I have changed so much with dysautonomia.

I think the two things I find most difficult to handle in the stories I read/watch are 1) injustice and 2) the evil mastermind who is always one step ahead.  I think what I like most in the stories I read/watch are folk struggling with brokenness.  And, of course, I love a good story, well-written with strong character development.  This year, I have started and stopped several shows, but one that I love is Fox's "Lethal Weapon." 

I was practically raised on the "Lethal Weapon" franchise.  Or maybe I should say that those were the movies I watched with my father ... during the good times.   After all, who doesn't love a good a good shoot-'em-up?  What I love about the show "Lethal Weapon" is its exquisite, but subtle storyline of loss and grief.   It is a slick show, with tons of stereotypical action.  Fast-paced, each episode is over before I realize it.  However, woven in all that fun are the storylines of Riggs grief over the death of his wife and Murtoch struggle with his own fragility (after a heart attack).  It is a lovely, lovely, lovely show.  

I watch it and smile, thinking just how much my father would like it.  I watch it and weep, for the agony of loss.  I watch it and hunger, at the love and commitment of family show.  I watch it and chuckle at the rather incredulous stunts.  Hollywood can be so silly in what it sells.  I watch it and marvel, at the craftsmanship of the writers.  Ingenious, really, to slip such quality into such a slick package.

When I think about the Stella Young TED Talk and her thoughts on the capacity of our bodies, I think that I want to be both gentle and strong with regard to the fragility of my emotions.  I want it to be okay that there are things I simply cannot watch or read or hear.  At least not now.  I guess I am saying that I think one of the messages of her talks would be that my fragility is not a weakness.  It just is.  Live with it.

Thursday, November 17, 2016

An answer...

Last night was just brutal for me.  Amos started vomiting and didn't stop for hours.  All over the sofa.  All over the rug.  All over the pillows.  All over me.  All over the floor.  All over the main staircase.  I took away his water, even though I was worried about his hydration.  His last expulsion was around 3:00 AM, when he vomited in my bed.  SIGH.

I did not get much sleep.
I dreamt he died.

His vet and vet tech are simply wonderful.  To him.  To me.  Because I often sit on the floor, they prepare a room for me with a few blankets on the floor for padding.  Because Amos is so nervous, they will start his appointment sitting on the floor with him and then move to the table.  They listen to ALL of my fears and worries.

We determined that, hopefully, the vomiting and the denuding himself are two separate issues.  We believe the vomiting was from the benadryl, that Amos is unable to tolerate it.  I stopped it.  The vomiting stopped.  I wish he could have such an effective medication, but I am glad Amos is no longer vomiting.

Whilst I was whispering sweet nothings to Amos and giving him body massage after waking this afternoon, I discovered a flea.  It shocked me since he is on a combination of heart worm and flea medicine.  Being an ex-professor, I put the flea between a piece of tape (I should have wrapped it up in a kleenex) so that I could bring it to the appointment.  Given the flea's presence and the worst bare spots being on his behind, Amos appears to have a bad allergic reaction to flea bites.  Since he had no fleas and no flea dirt (poop) when they searched his body, the vet thinks it was just that one.  It is difficult for me to think that one teeny tiny thing could do this to my dog.  Plus, I am highly allergic to fleas and I have no bites!

It turns out the combination medication that Amos takes is one that renders fleas sterile so that they cannot reproduce.  So, the vet switched Amos to a combination medicine that kills fleas, so that one can only bite once.  Sadly, that type is more than double the price of his original medication.

The thing is ... for 11 days now, I have been walking Amos.  A couple of weeks ago, I spent the whole day languishing on the sofa, not even eating.  Amos languished with me.  I was struck with fear that I was turning Amos into a couch potato, so I decided to start trying to walk Amos every day. To venture out with my cane and walk a few block out a few blocks back.  Let me tell you, Amos prefers to be the couch potato.

With the warm weather and Amos having to walk through leaves on the sidewalk, he likely picked up a flea on our walk.  So much for puppy dog exercise!

Given his cherry red skin, even on his lips, the more expensive combination medicine is warranted.  He gets his heart worm medicine on the 1st of each month, but the vet asked me to switch today so as to prevent another occurrence.  She said it can take a few weeks to get his inflammation calmed down and it is best not to have any more bite whilst working on that.  I wanted to tell her I'd be glad to stop walking, but that would not be best for my little Fluffernutter.

There were two good bits of news:

First, Amos had become a bit of a chunky monkey.  His weight ballooned to just over 27 pounds.  Given that his mom was eight pounds and his dad was 10, he already is a bit of a porker.  The vet would like him, for his frame, to be about 22 pounds.  We dropped his food down last December, but at his visit in May, he was still ... hefty.  She talked about switching to a sedentary diet since I am disabled, but that costs more money.  So, I asked for me to try one more thing.  I just didn't tell her what.

You see, I think dry dog food should be wet.  And I was wetting his food with milk.  I doubted that a little bit of milk twice a day would make a difference, but I switched to water.  The other main thing I did was start being meticulous with his scoops of food.  I have a quarter cup scoop (from powdered  Gatorade) and he gets two scoops per meal.  I was rounding them, which I realized meant he was really getting five scoops of food a day.  Now, I watch to ensure the scoop is mostly level before dropping it in his bowl.

Amos is now 23 pounds.  One more pound to go!  His vet believes that if I continue walking him each day, then he will be the lean, mean Fluffernutter machine she wants him to be.  The vet tech helped me adjust his harness because it was practically falling off of him.

Second, Amos is now taking theanine, too!  A short while ago, Becky mused about theanine for dogs when we were discussing his angst.  I smacked myself in the forehead at my stupidity and went searching.  I found several brands and set about reading ingredients.  I settled on Composure, primarily because it only had three active ingredients instead of a boatload of things.  Today is Day 6 of his taking Theanine.

I have noticed that Amos flinches less when I touch him and have deeply enjoyed that.  Since the pit bull attack, he has not enjoyed being petted.  What was remarkable is that Amos let both the vet and the vet tech touch and handle him! AND when it came to examining his head, they did not have to use a muzzle.  I was sooooooooo excited ... doubly excited that they noticed a difference in him.

That pit bull attack robbed so much from Amos.  It changed him and diminished his quality of life.  I have long searched for ways to ease his angst, his constant hyper-vigilence. This is a small, but significant step in that direction.

I certainly hope that Amos' inflammation calms down more quickly than the two-three weeks the vet said that it could take.  It is hard for me to look at his raw skin, to know that he is hurting himself.  And he's been just plain miserable.  At least the answer to his illness is far better than I feared when he was puking his guts up.  And it is a tiny bit cool that we share the same allergy!

Wednesday, November 16, 2016

Cleaning day...

Today is a cleaning day.

My parents have been funding a monthly, full-house clean.  Of course, we had the great debacle with The Maids, who broke an original floor register and I had to battle to get recompense for it.  When Mother started pushing me to find another cleaning company, I was deeply hesitant to look.  It wasn't just the things that were broken or even battling to get the cost of the replacement reimbursed.  It was just how ugly the owner and manager were to me.  The things that they said still haunt me, as much as I have tried to put them out of my mind.

This is now the third clean with CottageCare.  I am happy to say that they actually do a better job.  And, more importantly, they have stable staff who are quite friendly and positive.  Having the same team leader three months in a row is a relief.  Her partner, now two months in a row, is rather diligent and I hope that the pairing remains long term.

I generally have several goals before cleaning days, chief amongst them being to stop cleaning the house the night before.  No, I do not do a house clean, per se, but I do tend to empty all the trash and clean the kitchen counters.  I go around and look for (and remove) dust bunnies, too.  My dirt embarrasses me.  Shames me.

In the past, I have tried to get Amos bathed, the bedding changed, and the toweling and bedding washed, dried, folded, and put away.  That is a lot of work for one evening, although having a clean Fluffernutter and a clean house and clean sheets is just marvelous.  However, since Amos has started taking exception to his skin, licking now eight bald spots in the process (we have a vet appointment on the morrow), I was advised to hold off giving him a bath.  That seemed contraindicative to me.  But the vet tech said that some skin problems give off an oder that helps with diagnosis.  Of course, she also said that his skin could be fine and Amos could be having some stress issues.

Stress issues.

My bundled sage and thyme had been drying on a rack in the solarium.  I had wanted to get it out of the room so they could vacuum the rug and to get them ... processed ... so that the mess of that job would be cleaned by the maids, not me.  I am pleased to note that I accomplished that goal ... with about 15 minutes to spare.

Another goal has been to get some cooking done the night before, not the day of the clean.  I somehow had gotten in this place of finding myself in need of cooking the day of or the day after a clean.  So, last night, having skipped the whole bathing Amos task, I made another batch of Sun-dried Tomato Chicken Meatballs and one of my Medley Black-eyed Peas.  I had wanted to make some more of my bloody fantastic 15-Bean Soup, but I am out of the package of 15-beans.  Sadness.

Amos kept me company whilst I was cooking.

The last goal was to clean out the fire place, lay another fire, and move the canvas bag for logs out on the back porch so that the hearth can been cleaned well.  In cold weather (we are finally having some cooler weather), I tend to leave a stack of wood over by the fireplace even when I am not having a fire despite the fact that doing so is very decidedly not visually restful.  Last winter, the maids just cleaned around it.  This winter, I would like to clear the space around the fireplace

I left this last task for after the maids arrive.  They typically start on the second floor and clean it completely before the first floor and the basement are cleaned.  Although one of them does the bathrooms and kitchen before joining the other on all the rooms.

The best part about CottageCare is that this is not a time-based clean.  It is a house-size based clean.  So, the maids are never pressured to hurry up and finish.  I was very, very, very clear about the basement being on the clean list, which was a constant source of dispute for The Maids, despite knowing about it beforehand.  I like how CottageCare describes my basement: laundry room, bath, rec room, bedroom, living room, and utility room.  The latter is the only part of my house that the new maids are not cleaning.  And I think that is just wonderful.  [The whole house cleaning part.]

As for the clock, it is definitely running fast now, so I stopped it to make another adjustment.  When I went to the clock shop to pick up my grandfather's pocket watch, the repairman told me that the way you "look" at a nut on a pendulum to determine which way is clockwise is to look down on it.  Of course, I was right; to turn the nut clockwise means lowering the pendulum and, thus, slowing the clock.  I am looking forward to having the timing set correctly, but I do not mind working on the adjustments because it means I have learned something new.

Tuesday, November 15, 2016

Clocks and fries...

My father's clock, once I brought it home, was running crazy fast.  A part of me was frustrated, because I paid a significant amount of money to have it repaired.  However, the repair took a month longer than expected and the owner has been inundated with folk bringing in their clocks after an article about the clock shop appeared in the paper.  It is the only clock shop in a several state region.  So, I Googled.

I learned that, on a pendulum clock, if it is running slowly, you need to turn the nut on the bottom of the pendulum clockwise.  You know, I find that direction rather unhelpful!  What is clockwise on a nut that is sitting horizontally on the bottom of a pendulum.  At first, I thought it meant turn it from right to left, like a clock.  However, that was so absolutely not the right direction.  I sat and thought and thought and thought until I realized that unscrewing the nut lowered the weight of the pendulum, which would make the pendulum swing slower.  If I screwed the nut tighter on the stem of the pendulum, the mass would be raised (shortened) and it would swing faster.  Swinging faster would move the clock works faster and, thus, increase the running of the clock.

The articles I read talked about adjusting your clock on its weekly wind.  But with it losing around 12 minutes a day—my adjustments to correct the time make it impossible to know just how much it was losing—I wasn't willing to spend weeks correcting the clock's time.  After all, I can see it from my sofas!

I learned that one-half turn is about 30 seconds in a weeks running of a pendulum clock.  When I first started adjusting the clock, I thought I had taken a big swing at the running (yes, I watch NASCAR), but the clock was still slow.  I had to redefine "big."  It started with two tentative adjustments, which I thought were substantial.  They were not.  Then I took three big swings at it, adjusting the clock in the evening and then waiting to see where the time was after I woke up for the day.  The last swing was a bit too far as my father's clock started running too fast!  A part of me was glad to see that, especially since I am not a clock repairman and have been tackling this timing problem with much fear and trepidation. 

Today, all I did was adjust the time, not the pendulum. I wanted to live with the last change to see if it being slightly off was a function of my not setting the time properly yesterday or if it is still a wee bit to fast.  The clock seems to be about 90 seconds too fast ... or 90 seconds set improperly.

I thought for a long time about what day of the week I would like to chose for the winding of the clock.  I mean, it was wound in the shop on a Tuesday, but that day doesn't have to be my winding day.  I finally settled on Sunday, because my father, like myself, was a lover of football.

Opening the face to either set the time or wind the clock, makes the clock shift on the wall.  Since part of having a pendulum clock run properly is having the works hung level, this causes a bit of a problem.  I would like to figure out a way to put in something discrete (like a push pin) that will stop the clock from moving.  For now, I drew a pencil line on the wall to give me a guide as to where the clock should be hanging.

The clock repairman spent quite a bit of time with me in the shop teaching me how to hang the clock.  You need to first hang it level with a level guide, but then you also need to listen to the TICK TOCK. It must also be "level," or perhaps "even" might be a better word.  It must sound as if there is equal weight and time spent on the TICK and the TOCK.  If one seems stronger than the other, then that will affect the time.  This is because the works of your clock might be slightly off from the frame of your clock.  So, for example, on my clock, if you hang it with the level bubble slightly to the left of the window on the level guide, then the TICK TOCK will sound even.

Of course, walls can also affect how a clock is hung as both old and new construction can be off as well.  Houses are rarely built fully plumb (I think that is the right term).  In my house, I noticed that whilst the level bubble still needed to be to the left on the window, it did not need to be as much to the left as it needed to be on the shop wall.

Who ever knew that owning a pendulum clock could be so very complicated!

What is not complicated?  Going to Wendy's today after 4:00 PM.  A portion of all proceeds after 4:00 PM will be going toward helping foster care children find forever homes.  I love that Wendy's supports adoption so publicly and oft puts its money where its figurative mouth is.  Having fries and a junior bacon cheeseburger is not a difficult thing to do to support foster care adoption.  Thousands and thousands and thousands of children in America need loving homes, need permanent families.  If you are a health nut, have a salad.  Or bring a frosty to a less-than-healthy-guru friend.

Monday, November 14, 2016

Battle of wills...

You know, I just had to tell Becky that my tea only freezes when the jar becomes empty.  This evening, I discovered that the entire two quarts had frozen solid.  SIGH.  I set it out to thaw and have been trying to leave the refrigerator door open a bit.  The new refrigerator cannot come soon enough!

This popped up on my news feed, and I just had to chuckle ... deeply ... when I spotted it.  Too true, for me, when it comes to waiting for both Zofran and my migraine meds to kick in.

Today is Day 27 of no hormones.  I used to be a by-the-book-28-day-cycle sort of gal.  So, I wonder if tomorrow will finally bring a change.  Only, well, I learned that it can be a few months before things get going again ... if they are going to get going.  I am not good with waiting or uncertainty.  SIGH.  I am trying to remain focused in the money I am saving not taking them.

Today is Day 3 of Amos taking doggy theanine.  Becky mused if theanine was available for dog, whilst we were discussing just how much that helps the anxiety.  I Googled and, sure enough, there is!  I read through a 1,001 ingredient lists before settling on one.   I think it is easier for me to touch him, without startling him, but I do not know how much the theanine might eventually help Amos.  He still freaks out when I inhale before sneezing, for example.  Silly pupper.

Amos and I managed our dinky walk today.  Day 8 of that physical challenge for me and Day 8 of that fear challenge for him.  He loathes his leash so much that he jerks himself out of it and often falls to the floor, being tripped up as he pulls himself free.  So I am trying to teach him to sit before I take it off and then stay whilst I am taking it off.  My little Fluffernutter is highly obedient with sit and stay when it comes to giving him a dish to pre-clean for me.  Not so much with waiting for me to remove the leash.  So, each time we get home from a walk, Amos and I become locked in a battle of wills.

Who do you think will prevail?

Sunday, November 13, 2016

The nature of fear...

The only way that I could get Amos out the door for our little walk today was to scoop him up and toss him across my shoulders.  Given that is his most favorite place to be, he was willing to stop protesting his leash.  The downside to that choice is that removing him from my shoulders is actually rather difficult.  Amos is quite skillful in remaining up there when he so chooses.  Still, after a couple of houses, I was able to set him on the ground.

Seven days of taking my dinky little walk with Amos.  Seven days of extra exhaustion.  Seven days of wrestling Amos into his harness leash.  Is is worth it?  I ask myself that quite a bit.  I would rather just snuggle with him on the sofa or in the new GREEN chair.  I do think that it is better for Amos to walk a bit, to get some fresh air and a bit of exercise.

He is a smart little Fluffernutter.  He remembers the two houses with barking dogs and begins begging to turn around before he reaches each one of them.  Today was his bravest day, with the least amount of quivering as he passed by the vocal canines.  Really, given the fact that he himself rather loudly and emphatically protests the existence of any living thing that crosses our sidewalk, I think Amos should take in stride the same behavior.

He tells me that I just do not understand the nature of fear.
Too true.

Saturday, November 12, 2016

Frozen food...

I spent the day resting, after all the walking during the refrigerator shopping.  Well, resting and discovering just how much of my food is ruined.  Yes, I have found the majority of it frozen.  For some things, that doesn't really matter.  And my milk and cheese is still okay.  However, everything else—aside from the condiments—is toast, figuratively speaking.  Maybe I should say burnt toast?  The lowest blow was tossing out my deviled eggs.

Really, I have no one to blame but myself.  I have been so very, very exhausted that the mere thought of trooping up and down the basement stairs repeatedly to move everything down to that refrigerator was too overwhelming.  This is a perfect example of how much it STINKS being chronically ill and alone.  I simply do not have family or friends who could pop over to move food.  Still, I should have pushed myself.

You know, this is also a good example of the problem when you live with exercise intolerance.  Trying to walk Amos each day takes the majority of what energy I do manage to gather each day.  On the days I torture myself on the recumbent bike, I cannot do much else.  As much as I am blessed by my GP, when I mentioned to her to that I do not ride it on days I have appointments or have to run errands, she told me that I should be riding it every day.  I really just wanted to scream my frustration.    All of my doctors, now, are so very good at dealing with dysautonomia, save this one area.  All of them keep pushing me to exercise.

And so I push myself to exercise (to please them).
And my quality of life plummets.
And I lose my food!


Friday, November 11, 2016

This day...

How are you?

That question is so difficult for me to answer.  For one, I want you to want me to really answer it, instead of giving the socially polite answer.  For another, I struggle to put into words how I really am.

How are you?

Well, I am on Day 23 of being off hormones and have learned that, amongst other things, they were helping to manage the chronic neuropathic pain in my pelvic region.  It is difficult waiting for the other shoe to drop.  Will I get a period again?  How bad will it be?  Once I start bleeding again, will I stop?  I just wish someone could give me an online of what's to come instead of just ... waiting.  AND I am deeply frustrated over the fact that my refrigerator is failing, as well as the ice maker and dispense being broken.  The temperature in the refrigerator has now dropped to lower than that in the freezer and my food in there is being frozen.  AND I now have two doctors wanting me to have another visit with a nutritionist, even though at least one of them is fairly certain what I am eating is what I should be eating (if what I say I am eating is what I am actually eating) and neither one of them seems to understand what it means when I say that I cannot afford a specialist visit if it is not dire at the moment, as in I have three upcoming specialist visits and those are all I can handle since I still have the hospital bill from the surgery that was supposed to help with swallowing and didn't.  AND Amos has created another hotspot on his side, which means I am constantly trying to redirect his attention away from it so that it can heal.  AND I am having contacts nightmares and so I spend my nights waking every two hours or so to swap out ice packs for the nerves on the back of my head and trying to calm down from either terribly frightening or terribly disturbing dreams.


See?  How do I answer that question??

Noting just how little I have been playing with Amos (he prefers to snuggle and I tend to give into that desire), I started, on Monday, trying to take him on a little walk.  Me, my cane, and Amos.  Amos' idea of a walk is for me to carry him, so the first day I spent more time not picking him up, gently taking his paws off my legs, turning him around, and giving his little fluffy back side and encouraging push, than I spent walking.  Tuesday was not much better.  Today was the first day that he only asked to be picked up once.

Getting him to allow me to put on his leash is a bit of a challenge.  Once it is on, getting him outside the door is not.  Walking?  Well, I explained that difficulty.  Once we turn around to go home, the main problem is that he cannot get back fast enough so that he is pulling me the entire way, my arm stuck straight out like some sort of crazy scene from a comedy.

Walking means mostly that is all I can do ... or rather all I should do.  I become very frustrated with others tell me that I will feel better if I just exercise.  Riding on the recumbent bike is pure torture and my legs are the poorer for it.  Most of the time, the effort is not all that beneficial cardio-wise because my heart rate barely rises, even though I am sweating and shaking.  Taking Amos for a walk is good, but it is just one more thing that exhausts me.

This early evening, after a nap before and after the walk, I ventured out to start pricing refrigerators, especially since my online search was just not working out for me.  I had planned to go to four places (Lowe's,  Menard's, Home Depot, and Stucky's).  At Menard's, my second stop, I came up with the same two options that I had at Lowe's.  However, the Whirlpool (my current manufacturer) was a mere $997 ... a WHOPPING $402 LESS than list at Lowe's.

At first, I just couldn't see myself buying the same manufacturer, even though my trusted electrician firmly believes Whirlpool is the best refrigerator option.  Then, I kept thinking I should make my way to Home Depot before any serious thoughts of purchase.  But I came back to the shocking price.  It was $300 less than the list price of my current refrigerator was five years ago.  That, I got on sale for $100 off, so I still paid $201 more than what this new refrigerator will be.  The sale price kept screaming around my brain:


I decided, finally, that there was absolutely no way that driving out to Home Depot was going to get me a better price and, in talking with two different appliance folk, I am fairly certain that the LG and Whirlpool are my only options when it comes to finding: 1) a side-by-side; 2) 25-26 cubic feet; 3) ice in the door so there are more shelves in the freezer; and 4) glass shelves in the freezer.  My last desire was to have another cheese drawer (the LGs didn't have it).


I gave in to the screams and ordered the refrigerator, still bemoaning the fact that I only got five years out of this one.  There is, however, NO WAY that I am spending $525 to replace the control board in the hopes of getting it to stop making a freezer out of my refrigerator.  All that money and I would 1) have no guarantee of repair since I might also need to replace a sensor and 2) still have a broken ice maker.

The only quasi-good news about the purchase is that the extra shelves that I purchased for my freezer (all those ice packs) will fit in the new one.  They won't match exactly, but they will fit.  The bad new is that I have to take money out of retirement to cover the cost since I have already had far too many unexpected expenses this year.

After the very long day I had, I was talking with someone who had troubling news.  A loved one was raped.  Suddenly, I found myself becoming very, very, very cold and distant.  I worried ... greatly ... that my friend would hear the ice creeping into my being and be hurt by the voice that sounded so very stilted to me.  However, I tried to focus on sharing, were I the one hurt, what I would like to hear and have others do for me.

Still struggling with dissociation, I tried to keep ... well ... being a friend.  Suddenly, I asked if my friend would like for me to read Psalms.  I read picked two and then read a third one requested.  I almost wept reading Psalm 139, realizing that, once again, even I had underestimated the power of the Living Word.

I feel the robot, saying, "I am sorry that your loved one is hurting.  I am sorry that you are hurting.  I will pray for you both."  But I am sorry.  And I have prayed (and will continue to pray ... mostly psalms).

What heartened me is that, although I HATED realizing that I was dissociating, I did not (and have not) punished myself for that.  I thought briefly about Stella Young's TED Talk and her reference to the capabilities of our bodies.  I suppose you might say that this is more a capability of my mind, but my mind is a part of my body.  The anguish of a rape is not something I can remain present for emotionally, but I could remain cognitively.  For me that is what I could and did do.

Lord, have mercy.
Christ, have mercy.
Lord, have mercy.

Wednesday, November 09, 2016

Tick tock...

I did it!  I managed to thin the day lily bed today.  It was harder than I thought it would be, but it was also easier, not that that makes sense.

I was so intent on starting, that I forgot to take a good before photo.  This is after I used my pruning shears to cut back all the day lilies.  This is just one third of the bed, at the far end near the alley.

Last year, I did not pull out all the dead greenery, so I had a lot of that left, as well as all the growth from the bulbs since we have had such a weird, warm fall.  This is the bed after pruning and raking, before I started digging.

If you look closely, the brick edging is rotated on its side, being pushed out from the over growth of the day lilies.  At first, I went to straighten just the end of the edging.  Then, I realized that straightening it meant working my way back toward the other end and I ended up re-setting all of the edging save for a few bricks.  Whilst I did not do as good a job as Firewood Man when he put them in five years ago, the edging is much, much more straight and the bricks are are level now.

I worked until after dark, having fetched my headlamp.  If you look really closely at this rather lousy after photo, you will see just eighteen day lilies.  Compare that to the photo above, and you will see just how much digging with the shovel I had to do.  They were so overgrown that there was really no dirt between all the bulbs (which look like fingerling potatoes) and roots.  [The near end of the photo is the middle of the

It is my hope that, having never actually thinned this rather old bed, that I will not have to do the work again.  Actually, I know I won't.  Someone else will have to do so.  I also shoveled quit a bit of dirt out of the bed because this far end was about three or four inches higher than the rest of the bed.  I raked as much as I could down the bed and then add to the dirt pile from relocating the variegated maple.  Firewood Man is going to eventually deal with the pile.

I had planned to add gypsum to the soil, but I forgot.  Firewood Man is not coming to mulch until  Sunday, so I have time.  Right now, I am trying to recover from the agonizing pain wracking my body have pushed it so hard to do this work.

It is such a relief, to me, to have this final bed tended.  All of my beds are thinned or weeded or relocated and all of them (at least after Sunday) are (will be) mulched.

The spot where the vareigated maple use to be is empty.  I talked with Firewood Man about just putting in a massive rock in between the St. John's Wort bushes.  I did think I would pop over to Lowe's or Menard's to see if there are any interesting trees left.  I would adore a rock and I would welcome another visual barrier to my neighbor's untidy yard.

Call me an optimist, but I honestly do believe that this task was the last hard work I will ever have to do in my yard.  Hopefully, all I will be doing is cutting back the greenery after my bulbs are done and a bit of light weeding (since my plan was to make it easier for Firewood Man to spray my beds where possible).

Right now, I am curled up on the large sofa with my beloved Fluffernutter in my lap and the large weighted blanket atop both of us.  A fire is roaring in the fireplace and ...

... my father's clock is ticking on the wall.

Tick. Tock.
Tick. Tock.
Tick. Tock.

I hung it over the television, which may seems strange, but I like that it across from the seating area in the living room.  Frankly, I do not think that the photo shows just how well the clock fits my home.  And the photo makes it look smaller on the wall than it does in real life.  I find that odd, and I wish that the photo did the clock more justice.

The repairman took an extra month to tend to my father's clock.  Normally, that would have annoyed me to no end, but since I wept every time I looked at it or thought about it, I didn't mind the extra time to get used to having it.  When I hung it up on the wall (yes, I used a hollow-wall anchor), I didn't weep.  I only felt grateful to have something of my father's ... to have one of his beloved clocks and to have it be the only one I remember from my childhood.

Tick. Tock.
Tick. Tock.
Tick. Tock.

Tuesday, November 08, 2016


As you know, I have a love/hate relationship with Facebook.  I have left it abruptly several times.  Each return has found me whittling down my "friends" more and more.  I still have a few that I care not to, given that there is zero interaction with them, but I cannot work up the courage to unfriend them.  SIGH.

Anyway, today is a day that I find myself wishing to leave Facebook again, wrapping my hurt around me, tucking my tail, and fleeing.  Why? you ask.  Because I am hurt by the dearth of likes for the Stella Young Ted talk.  

I have four or five folk who consistently "like" my posts because they know that I view "likes" as a way of saying "You're okay, Myrtle" or even "I support you, Myrtle."  Consistently, on Facebook, I have found that when I am most vulnerable, when I share that which is deeply important to me, I often have zero likes.

I admit that it bothers me that I have little interaction on my posts.  Mostly, what garners comment, are my learning-about-cooking posts.  I actually do wonder why the other 14-15 folk wish to be Facebook friends if there is no interaction between us.  And the lack of exchange, in general, leaves me feeling the freak.

I started this Book of Concord Group, hoping to have others who love the text join me in sharing what they are reading/thinking about the BOC.  At the high point, I had just over 250 members, but I did not have folk who actually wanted to engage in discussion or to share what they were reading.  I felt more and more and more lonely, despite a couple of pleas for interaction.  I couldn't understand why so many folk wanted to join but no one really wanted to interact.  I mean, joining did result in a quote from the BOC in your feed most days, but why join a group who's purpose is to revel together in the BOC and not revel?

I had decided to close the group, but I know that my three Facebook friends in there really appreciated the BOC quotes, as did one pastor who specifically mentioned them.  So, I ended up turning it into a secret group (so I would have folk bugging me to join) and removing all from membership except my three friends, the pastor, and a woman I know who loves the BOC.  I still do not get interaction, though the pastor has tried.  And one friend has tried to post BOC quotes because she knows how lonely I feel in my own group.  The ... skewed ... part of me see this as just another failure.

So, since I feel the social oaf on Facebook and regularly find myself hurt over the silence of my Facebook friends, why do I stay?  Because I am lonely.

I strongly believe that what Stella Young has to say in her very short TED Talk is deeply profound.  I believe it is a message that everyone should hear and everyone should value.  I believe it is a message missing in the church, having rarely found a church that was disability friendly or ever found a pastor who saw me as something other than disabled and wounded.

I have said many a time that one of the reasons I love the BOC so much is that my doubts and fears and anxieties are represented in those texts as something normal, something that will be regularly encountered in the church.  In the BOC and in Luther's writings, I am not an outlier.  Strange to be so accepted by a man dead centuries and not much so by those who are still alive.  SIGH.

I posted the Stella Young TED Talk yesterday at 2:49 PM.  As the day wore on and no one "liked" it, no one commented, my heart sank.  I checked several times in the middle of the night, thinking of those in different time zones.  I checked this morning, thinking of those who were busy and off Facebook yesterday.  I checked it this afternoon whilst waiting at my doctor's office.  I checked when I got home from fetching a new prescription.  And I checked before and during writing this.

My heart hanging out there for the world to see and ... nothing.

Monday, November 07, 2016

Disability porn...

I found this during Invisible Illness Week, but I have waited to share it because I have been pondering  deeply what Stella Young has said.  I think it is important ... profound, actually.  I hope that you will watch it.  I hope that I remember this.

At first, I took to the message because I have felt the "inspiration" pressure/burden in a few ways.  To be frank, I have experienced the burden with regard to sexual abuse, which I KNOW is NOT disability.  Although, I do think that you are treated as disabled, after a fashion, with a history of sexual abuse.

The burden is that I have heard countless times that I should look at _________ as an opportunity to teach others (pastors, doctors, colleagues, friends, etc.) about sexual abuse.  How to pray for someone like me.  How to help someone like me.  How to befriend one like me.  How to serve one like me.  Frankly, I want to SCREAM whenever I hear that.  Why should I be the one to do the teaching?  Why do these folk not already know these things?  MILLIONS have been sexually abused.  This is not a new or a rare thing in my life.  The Courage to Heal was first published 28 years ago.  Nearly three decades!  Why is the burden of educating others about this mine?

And then there is the whole issue of silence with sexual abuse.  It is okay if someone like Elizabeth Smart, whose story of sexual abuse is used as an inspiration to others.  It is not okay if you are sitting in a bible study sharing prayer requests and mention sexual abuse.  Publicly, on a distant and grand scale, sexual abuse survivors are inspirational.  Privately, up close and personal, sexual abuse survivors make other uncomfortable and the particulars of their experiences is oft inappropriate.  SIGH.

I will say that I do feel the inspiration burden being chronically ill.  I've tried to write about how the majority of messaging in Facebook dysautnomia and chronic illness support groups is that I am a warrior.  I am inspirational in my battle.  But I am not a warrior.  And I am not inspirational.  I struggle.  I doubt.  I despair.  Millions and millions and millions have struggled and doubted and despaired for myriad reasons; they are not warriors.

I cringe (and hurt) when folk tell me that I am strong or brave for merely living the life I have.  Such remarks, well-intended though they might be, wound.  They dismiss my struggle, my doubt, my despair.  They dismiss how I am feeling.  They insist that I am just "fine."  It needs to be okay for me to be ill, for my illness to be normal.

So, in a way, when I discovered the idea of disability porn, I was ready to listen to that message.  And it is a message that I find ... profound.  The word "porn" is so shocking to hear coupled with disability and applied to those memes and videos floating around social media.  But if you define porn as being  to objectify one group of people for the benefit of other people then that certainly applies.  And if you take that definition and start applying to most of the stuff about disability on social media, you begin to see why Stella Young worked to advocate against the social model of disability:  that folk with disabilities are more disabled by the society in which they live than by their bodies and diagnoses.

One bit from her TED Talk that really reverberates is what she said about her body ... that she's lived in it a long time and loves it.  Loving your body is so very foreign to me.  But it was the bit just after that:  she's learned to use it to the best of its capacity.  That made me think ... how can I use my body to the best of its capacity and then be okay with that ... limit?  I see that as a shift in thinking: identifying what bodies are capable of and accepting that rather than holding to the notion that you should spend your life striving to exceed your capabilities.  Maybe I am not putting what I am thinking about her comments in to words well enough to communicate it.  But I did want to note that bit of her talk.

Sadly, later in 2014 (the year she gave this TED Talk), Stella abruptly died.  It is my hope that her message more disabled by the society in which we live than our bodies and our diagnoses.  And it is my hope that posting it here gives pause to the few who read my blog.  Maybe enough pause to cause you to share the TED Talk with others and challenge yourself to think differently about the disability porn that comes across your social media feeds.

Saturday, November 05, 2016

That's me...

I'm not a huge fan of memes.  I especially don't care for the fact that we created a new word for them.  However, there have been a few in a chronic illness page of late that I have particularly appreciated, because a part of me exclaims excitedly That's me!:

I like this one because it has so much familiar on it, such as the priority of knowing the pharmacy number.  But it also highlights the trials of life with chronic illness focusing on the "I" instead of the "you."  I cannot really think how to phrase that, but it teaches others via reminding the self.

This one just ... catches my breath.  There are not enough words in the universe to express how important the words "I believe you" are to those of us struggling with dysautonomia.  And to those who have been sexually abused.

This one made me ever so less alone.  Perfect words.

Exactly!  Insane, isn't?  Sleep is your best friend.  Sleep is your arch enemy.

This one spoke to me, but also chastised me.  Sometimes I think that I am, in part, to blame for others not seeing me as sick because I struggle so much with KUWTJ Syndrome.  When I have visitors, my entire being is focused in Keeping-Up-With-The-Jones ... standing too much, walking too much, working too much, and most definitely not resting/sleeping enough.  So, I think I need to be better at not "looking" well, when the truth is that I am ill.

I am not sure what this really means or if I truly agree, but it reminds me of one of the exchanges that Kaylin has with her beat partner (in my favorite series) about how Kaylin defines herself by her failures and how that affects her and others.  It is a conversation that the two of them have a few times, as Kaylin struggles to shed the shame of her past.  And it is a conversation that gives me pause.

I define myself by my failures.  My falls.  No matter how much I might wish to do the opposite, I still define myself that way.  The worse part is that I include shame as part of my failures ... something outside of me!

So, I guess I am saying that I like this simple meme because it is a gentle reminder to shift my focus away from my failures and, if I am wont to get out the measurement tool, apply it to the after—to the rise—rather than the fall.

Friday, November 04, 2016

Without me...

Tuesday, Firewood Man came to tend my yard.  Normally, I would be the most giddy about the mulching that took place.  However, he also brought rock to refresh my rock river that had all but disappeared with the construction on the back porch.  I just love, love, love my rock river.

I took over a dozen photos of all the mulching, but I don't really need them posted here on my rememberer.  This one photo will do to mark the day.

Monday, I had planned to take care of the final prep work for the mulching, but somehow I never go around to tackling those jobs.  So, whilst Tim was working in the front yard, I worked in the back yard.  Yes, I completely overworked myself, my failing body.

In the bed at the right of the garage, Tim dug out the retired, ancient rose bush.  It had died back last fall, and I thought pruning it to just a few feet (the bush was taller than the garage), might bring it back to life.  Whilst it did grow some, it flopped over onto the grass.  I tried to keep it going, but I need my yard to be as maintenance-free as possible.  So, he dug it out for me.

I, then dug out the stonecrop I had moved there.  I had split the original two plants into four and yet they still grew enormous.  I have had stonecrop before, but never that large.  They, too, flopped over on the grass, blocking the stepping stones to the back gate.  So, I pulled them from the bed and relocated some of them to the back of the garage on either side of the garage door.  If they live, then I will have some beauty to my view as I pull in and it will not matter how large they get.

That left a mostly empty bed, so I put in the remaining ferns from my clear-out of my fern bed.  If they survive the transplant (with a week or so sitting in a bag in the garage), then I will have a second fern bed.

With that work done, I went to the weigela that you can see in the photo above and raised the bricks curved in front of it.  They had sunk again from the dirt settling after the sewage pipe repair.

Next, I salvaged a bit more of the thyme from the Rose of Sharons bed (that we had planned to kill off) that was clear of weeds and moved it over to the bed beside the kitchen.  I have some daffodils in there, but three of the junipers I had originally planted there were "watered" to death by a certain Fluffernutter.  The bed had one at either end and a whole lot of nothing in between other than when the daffodils bloom.  Now, it has four transplants of thyme that, hopefully, will eventually overtake the expanse.

I was knackered, but then I went to all of those weeds and thyme directly beneath the Rose of Sharons and began to clear it out.  At first, Tim was going to just spray killer stuff all over it, but I thought it would be best to clear out as much as possible and then kill what comes up later.  In the past day or so, the Rose of Sharons have started dropping leaves, but before that having just a simple base of mulch was a very much welcome bit of visual rest over there.  The sight of weeds exhausts me ... and condemns me ... for being a poor homeowner.

Tim had to wait on me a bit, but he did mulch around me in the back yard as I was finishing.  And then he moved the variegated maple tree that I got in the spring with Mother.  All the new leaves that grew in turned brown on the edges again, as if they were being burned.  The tree just doesn't seem to be able to handle full sun.  So, we moved it to the other side of the yard in the partial shade of the ornamental magnolia.  I sure do hope it survives.  I worry about it.

After Tim left, I thought, since I was all sweaty and trembly, that I should try to work on the day lily bed, which needs thinning before mulching.  Instead, I showered, took some Tylenol, and went to bed.  I was so very exhausted.

Wednesday, I rested more and kept taking copious amounts of Tylenol to help the pain of pushing my body too hard.  Wednesday night, however, I started thinking and couldn't sleep ... didn't fall asleep until 11:00 AM (or there abouts) on Thursday.  I had planned on just resting more when I awoke, but my neighbor offered to run errands, so I dragged myself out of bed, dressed, and went to fetch some chairs, a prescription, and some garlic.

For the next time the family visits, I swapped out my table, as I wrote before.  After having the table for a few weeks, I went ahead and put in a leaf, so that it could be set up for eight people (the house can sleep 10 and the table can be expanded to 10 as well).  My mother offered to help fund the purchase of two more of my chairs, so I went looking for the best price.  I found them at Kirkland's, used a promo code, and then had them shipped to a local store for free.

Errand running was much, much, much harder than usual.  It is always a challenge for me, but I clearly have not recovered from the yard work.  It is my hope that the yard work I have done will help reduce future yard work, but that doesn't change the strain on my body now.

So, today, all I did was the laundry from giving Amos a bath (he got stinky from being outside on Tuesday) and changing my bedding.  Going up and down the stairs was difficult, but also kept triggering my asthma.  Yesterday and today have been marked by a lot of huffing and puffing and wheezing.

More napping.

Tim mowed today, so the stepping stones are all edged at the moment.  My other goal for this fall is to raise them up with some sand, having not done so since placing them.  They have all sunk a bit too low.  I bought the sand for the project last spring.  I sure would like it completed before next spring.

Trying to use the shovel is almost laughable.  I have little control digging and even less stamina for doing so.  What I can do in the yard is less and less and less.  Tim was going to add more raised beds for me, however I asked him to wait on that.  As much as I want to grow more vegetables, I am not sure I can take on the extra work.  If my moved plants survived, I should have very, very little weeding to do, as most of the beds are ones that Tim can spray for me.  If the sedum I relocated to the planters on the front porch and if the new succulents like the solarium, I will have little work to do on my front porch as well.  Perhaps it is a pipe dream, but I do want to have GREEN growing things around my house that can mostly survive without me ... without my labor, my limited strength and energy.