Thursday, December 31, 2015

Weary...


All I wanted to do today was sleep.  Actually, all I have wanted to do since mid November is sleep.  But frantically getting ready for the visit pre-surgery and cooking post surgery and now getting the house back in order post visit and making the visitor returns, I have not rested much.  I am so very exhausted that I have not been able to read in bed for weeks.  I just fall asleep within seconds of lying down..

I love reading in bed.

I had planned on sleeping all through this day and the next and the next ... before I remembered that I had to go get blood work drawn today.  SIGH.  My appointment was at 10:00, fasting, so I was up at 8:30 to get ready and to spend a few minutes with Amos, who also very much wants me to be home resting.

There was a new tech at the lab where I go, so I had to do the whole: I-need-blood-drawn-from-my-hand-and-know-it-can-hurt-more-and-it-will-fill-the-tubes-more-slowly song and dance.  My hand is a one-stick location.  My arms are multi-stick locations. I very much prefer one-stick draws when I am doing blood work.

Today's donation was 12 vials, repeating all the blood work from this summer save for the genetic testing.  I will be interested to see if the supplements the integrated medicine specialist has me taking are helping.  I am most interested in knowing if the excessively high cortisol and inverted cortisol curve problems are any better.  My appointment is in a couple of weeks, in between more cardiology appointments and my first appointment with the new GP.

I have not wept as much as I did yesterday and my eyes are still swollen and sore.  It was difficult sleeping and, of course, getting up.  When I came home, I sat with Amos for a while, ate a cranberry bagel, built a fire, and slept for three more hours in front of it.

Then, I started thinking again, so I busied myself by watering the Wandering Jew baskets and all the plants in the solarium, went ahead and put away the few Christmas decorations that I had set out, save for the wreaths and the lights on the Christmas tree.  Yes, I had my first Christmas tree as an adult ... 30 years after I became one.




This was the surprise for my mother.  She loves live trees and has not had one in several years.  Firewood Man helped me set it up and my friend Celia bought me the tree skirt as a Christmas gift.  I bought the tree, the lights, and the stand ... the tree being a bargain-basement-price of $12.98.  I thought I was buying it for my mother, but I think that I really bought it for me.

I have had the glass ornaments (spun ornaments and a set of icicles) for years and thought they were lovely on the tree.  Simple.  The way I prefer things.  The star I've also had for years, but I am not sure why.  Today, I stripped the tree of skirt, ornaments, and star, but I left the lights.  I want to leave it up through the end of Christmas ... and maybe beyond.  However, despite keeping it watered, it appears to be getting rather dry.

I am not sure why I wanted the decorations put away, but I did.  More visual rest, maybe.

I have tried to work on grounding, since my counselor said that is the first step toward learning to change my thoughts and handle the emotions that are flooding me.  And the memories.  I find grounding difficult ... focusing on where I am now instead of then.  

I am also struggling to hold the thought in my mind that I am only just over a month out from surgery and will need several more to heal.  I am weary of pain.

I am weary in body.
I am weary in heart.
I am weary in soul.

Wednesday, December 30, 2015

His words...


"Stop that right now!"

Tell me to stop thinking what I am thinking or feeling what I am feeling and I tumble into the nadir of despair.  I am trying so very, very, very hard to learn new things, to learn new thoughts, but doing so is like climbing Mount Kilimanjaro.  And I am disabled ... needing a wheelchair for any real length of being out and about.  Seemingly impossible.

The cardiologist said Hal (yes, he used my monitor/communicator's name) shows the leads are fine.  He would be alerted if either of the two leads data reports were abnormal.  Hal also showed that it is not actually ventricle pacing that I am feeling.  But he does not know what it is.  Maybe, just maybe, it was the accelerometer, but he is not sure and I do not understand what that does.  He turned it off.  He turned off lots of features, stripping my 6-cylinder engine into a 2-cylinder one.  He also set my heart rate low threshold down to 50.  Already, I can tell you, I loathe that change.

I have felt my heart for years now, compliments of dysautonomia.  I hate it.  It is distracting and discomforting and often disturbing and disruptive to sleep.  I have felt it significantly less since the pacemaker.  I have felt it significantly more since the setting change.  When I move, especially roll over, my heart jumps.  I feel it ever so much more jumping from 50 than from 60.  My next appointment is on the 7th and I am hoping that he will change that setting back.

The pain ... wait and see.
The answer I was expecting.
Not the answer I was wanting to hear.

I have so much pain that I ignore quite a bit.  The hard part of this is the added pain, a proverbial straw that broke the mental camel's back.  But, too, if I mention pain, it is because I am concerned something is wrong.  I remain concerned that the placement of the pacemaker is too close to my left arm.  But  I will wait out the month he asked me to give him ... to allow time for more healing.

I was feeling a tad less hopeless until his nurse came in and chastised me with a fair amount of ire over my feeling as if I am a bad patient.  Telling me that everyone is bending over backwards just to accommodate me doesn't help.  Raising your voice with me doesn't help.  Telling me to stop thinking and feeling DOES NOT HELP.

I have spent the hours since then just broken and hopeless.  The things I think were sown more than 40 years ago ... most of them.  Rooting them out seems impossible, especially the more I learn to see those wrong thoughts even though I still think them.  Heck, I still believe them.  Recognizing them and knowing I am trapped by them is much worse than ignorance of them.

"It's going to get worse before it gets better."

I have heard that before, with counseling.  But I never got this far.  I never spoke the things I have spoken.  I have never remembered the things starting to creep in ... mostly into my dreams, reliving them whether I want to or not.  The tales I told were always the "safe" ones to tell.

Honestly, I don't know how to survive "worse."  Today, for me, was the worst day since I moved here, fleeing months and months of worse.  I made poor choices.  And I want to quit everything.  It all seems so pointless to me, because healing from trauma depends on me ... and I am so very, very, very weak.

When I was in the seventh grade, my mother dragged me, literally kicking and screaming, across town to see a psychologist.  To this day, I do not understand why, since I was the quiet one who hid in books.  My siblings were getting high and drinking.  I was the "good" one.  The man she took me to was a predator.

He threatened to have me committed if I did not agree to see him.  I did.  And for the length of his "therapy," I had lessons in how and why some little girls were created to serve men who have special needs.  It was a horror to me.  I knew no one would believe me and no one would help me and I was terrified of him putting me away somewhere where it would be much, much, much worse than just what happened in his office.  But what happened was a terrifying, shameful, painful education about my body and the male body and how I could help men like him.

There was a girl who rode the bus with me, Sarah Lily.  She was a year younger.  She had waist-lenght brown hair and glasses (I think).  She was tiny and a bit of a bookworm dynamo.  I told her what was happening.  She didn't tell another adult. I don't know why.  But what she did do was strategize how to distract the "therapist" from hurting me.  She made up the most fantastic dreams for me.  I wish I could thank her, for being a port in a storm.  So ... matter of fact.  It was okay for me to tell her what was happening.  She didn't flinch from it or judge me or anything like that.  She just listened and tried to help.

I dreamt of him the other night for the first time.  I was right there in his office, hearing those words again.  His words.  Words that made so much sense in my life because there were other men.  A couple of years later, when my sailing lessons turned into further sex education, I was guided by the words he spoke to me whilst he was ... hurting me or making me do things that I fill me with such horror and shame.

I dreamt of him again last night.

I hear his words and I believe them, even though the adult me knows what he did was wrong.  I hear his words and they make sense to me, when so much else in this world does not.  I hear his words and I am rooted, deeply, in fear and shame and silence.

I want the dreams and the memories of the young Myrtle to STOP.  I could handle the ones of the adult Myrtle, but the young Myrtle has always been kept safely at a distance.  Up close and personal is devastating to me and causes me to want to quit this life because I do not know what to do with such magnitude of shame and fear and pain.

When the nurse told me to STOP THAT IMMEDIATELY, I was afraid.  But I was devastated because I know that I am not capable, at the moment, of stoping what I am thinking and feeling.  I fail.  And I fail.  And I fail again.  I know this just as I know that I am no longer fully capable of managing my medications.  Such knowledge leaves me awash in a hopelessness that I have not yet known.  A hopelessness that has its own fear to bear.

If shame is saying that "I am bad," then my shame is telling me that I am so very bad that I do not deserve to live.  Whilst I know that is not true, it seems true.  It feels true.  It makes the most sense to me.

My counselor said that the only way to get through this is to first learn to ground myself.  That is step number one.  To focus on everything around me, what I see and feel and smell.

The only light in the room is coming from the roaring fire, the Christmas tree, and the candle.  The room smells a tiny bit of smoke, where logs have fallen forward as they collapsed and some of their smoke escaped into the room before I pushed them back.  It smells more of balsam and cedar from the candle.  I no longer can smell the Christmas tree.  I hear the hissing of the sap in the wood, the roaring of the flames being caught in my wickedly strong updraft, and the cracking of the fire burning.  My back is cold from the air slipping through around the large bay window, but the room is warm from the hours of burning logs in the fireplace, warm air that is being trapped in here because the pocket French doors to the dining room and the French door to the parlor are closed.  I see GREEN all around me because I am dressed in it from head to toe and am huddled beneath my weighted blanket.  My FROG ring is on my finger.  My heating pad is on my swollen abdomen.  And my head is resting on my Fluffernutter, who is, at this very moment, snoring like a drunken sailor.  I am not back with that monster.  Nor am I trapped with an unhappy nurse.  I am here, in a mansion I still cannot believe is mine and I am with the most amazing canine in the universe.

Still, I hear his words....

Tuesday, December 29, 2015

Brutal...


Counseling was brutal.  Tuesdays are good for me, but they are brutal.

I built a fire.
I drank a Dr Pepper.
I curled up beneath the weighted blanket.

I did not make all my errand goals, but I ventured to Meijer to return the grocery items that were not opened.  I wanted to pick up my prescription there, but there were 9 people in line and I would not have been able to do anything else.

I headed over to Lowe's and made the return there (a family member purchase) and then bought two new plungers because my toilets were stopped up multiple times via folk who have not yet learned how to properly use toilet paper.  My best plunger broke and the one that was left is not really up to snuff.  I also bought more of my beloved ZEP 10 Minute Clog Remover.

Then it was on to Target, to fetch more prescriptions.  I saved another family member return for afterwards (Walgreen's) so that I could get milk there, too.

Thursday night, when I was refilling my medication 7-day holder, I discovered that I was almost out of the new blood pressure medication.  I fretted all day Friday, worried I wouldn't remember to call on Saturday morning, when the pharmacy was open.  When I did call, the new pharmacist was not all that pleasant with me.  He was very put-out over my being out of medication and raised his voice when telling me that I needed to be better at managing my medications.

I was devastated.
I know I am struggling with that.
I know I need help.
There is no help.

The reason I didn't know I was almost out is that the auto-refills on my prescriptions were wiped out when Target's pharmacy system was switched over to CVS' this month.  That is why they were not filled and, thus, why I did not get either the phone call or the text reminder about them.  With a broken mind, I depend on those reminders.

What was more troubling was that four of my medications had no refills, when I thought that they did.  I even asked about them.  The answer I got was not accurate, I guess.  I had asked before I saw the surgeon because I felt more comfortable asking her for refills while I am without a GP.  So, I had to have the pharmacist send the requests to the cardiologist.  And then I emailed his staff to let them know they were coming.

His nurse filled them, and then I discovered that the lipitor was out of refills, too, even though I asked while I was in Meijer last month if there was a refill.  So, I had to talk the Meijer pharmacist, whom I do not know since I just get the free medication there, to send a request to the cardiologist, who wasn't on the prescription, then email his staff again about the fifth refill request.

His nurse sent this email back that was just ... harsh ... about not managing my medications and how that impacts others.

I burst into tears Saturday, after hanging up with the pharmacist on Saturday.  I did the same, reading the nurse's email.  Last night was ... brutal.

I was devastated.
know I am struggling with that.
know I need help.
There is no help.

I created a spreadsheet on my phone in the Numbers app that has the prescription info, refills, and expiration date.  For example, I have two refills on my two migraine meds, but I have just one month left that that refill is good, so I will need a new prescription for them.  I was not able to get all the prescriptions in there, but most of them are there.   That way, I could check the spreadsheet (if I remember) when I am at the doctor's office.

However, since when I can pick them up is every 23 days and I try to get 13 prescriptions a year because the last set is cheapest being in the donut hole, scheduling a reminder in my calendar has not worked ... I cannot figure out how to do it or remember to do it each time I pick them up to count out the days in case, as in this time, the auto-refill does not work.  And, truth be told, I pick them up early because I like the comfort of having a few extra pills for times I do not remember to pick them up ... which does happen even with a phone call reminder and a text reminder.  SIGH.

The cardiologist did not like the weekly report I sent last week and had his nurse call me yesterday morning to come see him tomorrow.  Georgie seems to pace me when on bumpy roads and when bouncing down stairs.  That is not normal.  Neither is the pain I have.  Mostly, I am worried about the placement because it is very, very, very prominent on the left.  The whole situation has me feeling hopeless.  A lose-lose proposition ... leave the pacemaker where it is and have a lifetime (10  years at least) of pain and problems from it or have a second surgery.  If, as I worry, a lead is dislodged, that would also mean surgery.  I do not want to have pacing issues, pain, or even to go through the regular interrogations, but neither do I want a second surgery, the cost of which is the least of the whys and wherefores of not wanting it.

I am deeply worried and trying to stuff that away somewhere whilst I wait.

I need, at the moment, a distinct lack of folk telling me what I need to be managing better ... including living with the pacemaker.

Saturday, December 26, 2015

Not managing...


Thursday night, when I was putting all the medications in my daily holder, I discovered that my new blood pressure medicine was almost out.  I panicked.  I mean, the next day was Christmas!   I was also really confused because all of my monthly medications are on auto-refill and I have Target sending me two reminders:  text and phone call.  Because they fill a bit early, they should have been filled around the 20th this month and the reminders should have come on the 22nd.  I had no reminders.

When I called the pharmacy today, the pharmacist was short with me and raised his voice, telling me that I need to do a better job of managing my medications because it was ridiculous for me to be calling him the day after Christmas saying I was out of my blood pressure medication.  I was shocked at his tone and attitude and I was crushed because I cannot manage my own medications well.  I cannot.  I need help and there is no help to be had.  After a really tough week and month, I burst into tears as I hung up the phone.

I know I struggle with managing my medications.
It is humbling.
It is humiliating (for an ex-college professor).
And it is terrifying.

Also devastating was hearing that four more of my medications needed refills. Without a GP, I am dependent on specialists to help me fill in the gap.  At their mercy, so to speak.  I am frustrated because I asked before I saw the surgeon, knowing I would feel more comfortable asking her rather than the cardiologist.  But with CVS taking over Target's pharmacy services, things are all a mess there.  I need refills on Celebrex, Flonase, Singular, and Levothyroxine.  That is pain, allergies, asthma, and thyroid ... all maintenance medications that I need.  SIGH.

I have battled tears all day.

Then the basement toilet was stopped up ... again.  Lots of toilets are being stopped up.  LOTS of toilet paper is being used by my nephews.  Lots and lots and lots.  This time, I just couldn't get it unclogged, so I will need to call a plumber out here.  More money that is not budgeted.  More worries.  More failure in maintaining equanimity.

Exhausted and perpetually close to tears, I decided to sooth myself by entering four recent recipes into my recipe remember blog so as to catch-up on my remembering:











All the meals have been rather well received, though my teenage nephews have not quite liked all the vegetables.





It is sort of like strudel on the bottom, soft and apple-y, and is very crispy and chewy on the top.  It is really unlike anything you have ever eaten ... or cooked.  You just dump ingredients, stir, dump more, stir, dump in the pan, bake, serve.  The ingredients are bit off-putting ... an entire cup of cooking oil, for example ... but my family has been scarfing it up all visit long.

Gosh, I made a million of these as a teenager, both for our family and for neighbors in need of pick-me-ups at the behest of my mother.  Funny, though, I did not really care for it the way that my family did, even though this was such a Memory Lane experience for me.

I actually have two new veggie recipes left, but just one more main new meal.  After that, it is all leftovers.  I would like make both, having the ingredients on hand, but I am also red-lined mentally, emotionally, and physically.  I hope to somehow tamp down all of that on the morrow and Monday so as to have a smoother ending of the visit than, perhaps, this day has gone.

As to what I am going to do about my medicine, I hope to package that away until Tuesday, until I am alone and can meltdown without ruining anyone else's day, until my next counseling appointment.


Wednesday, December 23, 2015

My Christmas gift...


My aunt sent me some Christmas money, which surprised and touched me.  So, I asked my step-father, since he was driving to Indianapolis to fetch my sister and my nephews anyway, if he would go to Trader Joe's and fetch me some of their BLOODY FANTASTIC frozen corn.  I was surprised and pleased that he did!




This is the laaaassssttt vestiges of the last stash someone fetched for me.  I now have 15 bags in the basement, 13 for me (a baker's dozen) and two to use for my nephews whilst they are visiting (IF and only if I must).  This really is the BEST FROZEN CORN in the universe.

I like to have it on my chalupas.
It makes them perfect.
And makes me contented.

[Yes, I saved room in the freezer in the utility closet for just this very purpose.  I dared to hope.]

So, how do I ever convey to my aunt the depth of my gratitude of guilt free (non-budgeting breaking) purchase of my beloved corn?  What words are there to describe the complete culinary pleasure of cooking and eating Trader Joe's frozen corn?  It is literally the closest you can have to fresh corn.  And corn completes me.   Warms the cockles of my heart.  Soothes fractured nerves.  Restores flagging hope.  Satisfies my soul.  That is the gift that she gave me!

[No, I really, really, really do not like to share my Trader Joe's corn.  Even with 13 bags.]

I did entirely too much today.  I tried to ask for help, but did not receive as much as I needed.  Tomorrow is a visit to the Botanical Gardens and I just do not believe that I can go.  I should stay home and rest as much as possible.

Shopping for the remaining groceries lasted two and a half hours, wherein I had no wheelchair shopping cart.  Then putting away the groceries, which thankfully I did not have to bring in from the car, took an hour.  I was exhausted, but it was not that much longer until I needed to work on dinner, which ended up being too much work for me.  I was panicking in how I was feeling physically and grew very grumpy.  I wish that my family could see how tired I was and understand my grumpiness.  But more so I wish that I could refrain from being grumpy.

We played Skipbo after dinner.  My sister won the first round and my mother then second.  I won neither round.  That is not how Skipbo games are supposed to go!

I want to be a better host tomorrow.
I want to be a better sister and daughter tomorrow.
I want to be a better aunt tomorrow.
I want to be a better delegator tomorrow.
I want to be a better rester tomorrow.
I want to be a better person tomorrow.

Monday, December 21, 2015

Not proper...


The past week has been a whirlwind of visit prep and naps ... and a few meltdowns.  I would give most anything to be able to pick up Amos and hold him.  Having him curl up in my lap is just not the same.  Five more weeks to go.

I have been cooking up a storm.  So much so, all three of my freezers are full ... mostly.  I held off making the apple cider donut cake because to make it so early I would need to freeze it.  However, I was able to make Santa Fe Soup, Chipotle Chicken Chili, Beef Stew with Beer, Red and Green Stuffed Shells, Spicy Dr. Pepper Pulled Pork, and Spicy Pulled Chicken 2.0.  I also baked Brown Sugar Oatmeal Bars and Creamy Lemon Crumb Squares.  And ... I made my first candy!  Salted Whiskey Caramels!!




I made the stuffed shells because my family is a glutton for lasagna.  I have never made that, but this is a recent Pioneer Woman recipe and it looked doable to me, although I was very much intimidated by the thought of making these.  I also, as you can see, ended up with another half pan because there were leftover shells and sauce and stuffing.  It was my first time cooking with fresh spinach.




I saw the recipe for the salted caramels and thought about it for days and days, whilst I slogged through the main dishes and desserts.  I wondered how I could make it without a candy thermometer and watched several YouTube videos about water baths and such.  Then I remembered this gift I got that I did not understand and put away without really investigating it ... much to my shame.  It is a Thermapen thermometer, GREEN no less, and was an exceptionally fine gift.  I believe the accuracy in knowing your temperature surely helps with candy because mine turned out bloody fantastic the first time.

However, I did learn the hard way that wax paper is not a good substitute for parchment paper when it comes to making caramels.  I spent at least as much, if not more, time peeling it off the back of the caramels than I did making them in the first place.  My friend Caryl suggested using a silicone baking mat. I would like to see if I could get one for this pan, but I wonder about the sides, because they would still stick to the pan.  Maybe cutting them away from the sides would help???

Although I am so very exhausted from all the preparation and the cooking that I am dull-witted and bleary-eyed, I am very much grateful, in a way, for oft being so busy and so weary that I had little time for thinking.

I have much to ponder.

I have struggled, mightily, with the visit to the surgeon.  Given the randomness of my symptom, albeit it severe, has her thinking it is just more dysautonomia wretchedness.  She thinks the bleeding, although not normal, is stress from the surgery.  And she thinks that I do not appreciate just how hard on my body it was for me, in particular, to have my heart messed with to get a pacemaker.

"It saved your life, Myrtle.  It is saving your life even now!"

I still cannot wrap my mind around just how much worse the bradycardia has gotten over the past five years.  When I was diagnosed, the bradycardia was mainly an issue when I was lying down.  Now, it is the majority of the time, even standing.  That is why my heart rate is normally just 60, the lower setting on the pacemaker.  Without the pacemaker, my heart would not keep me alive.  Using the theophylline to raise my heart rate was no longer working for me, given the spikes in both blood pressure and heart rate, which were more dangerous than I appreciated.

The surgeon was very, very serious with me.
But she was also exuberant.
And it is the latter that I find difficult to absorb.

She was laughing and joyous to see the change in me since I saw her in October.  My rather distressing shortness of breath was not lost on her, and she, in particular, noted its absence.  She also perused my medical records, since she is on the same system, and noted the improvement in my heart function. So much good has come from the pacemaker.  However, I am simply not used to folk being so very, very happy for me, celebrating my gains ... noticing them even.  In my family, I am utterly alone with my illness and my doctor was very emphatic that, here in Fort Wayne, I have two doctors at least (she was categorizing my cardiologist as such) who are rooting for me, wanting me to be as better as I can be, willing to work hard to help me, if need be.  Such words!

What floored me is that she said, in such an open and genuine tone, that I was her best Christmas present already, no matter what else was beneath her tree.  WOW!

But we also talked about how deeply I struggle with the ventricle pacing.  I very much want to open my incision myself and pull it out of my chest at times.  I do not like the feel of the electricity, but more so I fear and loathe the pressure that I feel in my chest and throat, the sensation of choking.  It is also difficult knowing that all of that is due to a machine ... a machine I was led to believe I wouldn't even know was there aside from, perhaps, a bulge in my chest.

On the left side, the pacemaker is very, very, very prominent.  I can almost curl my fingertips beneath it.  And it hurts.  It hurts more than it did last week.  More.  I do not think it should be hurting more.  I do know that pacemakers can be repositioned, but I cannot fathom going back to the hospital.

As it is, I still greatly fear that I have dislodged one of my leads.  Georgie's self tests have felt a bit different the last two nights.  It is near impossible not to reach out with my left arm.  I have not done the lifting, but I have done some pulling and pushing before I learned that was just as bad.  And if my right hand is occupied, I automatically reach out with my left.  I will not know until the 7th, when I see the cardiologist, if I have done something (I can be x-rayed then).  My only hope is that I have yet to see my heart below 60.  Nor has it, with all the extra stair walking up and down, spiked too high.  Perhaps the leads, at least, are okay.

As to the pacing and the placement, I see no hope for those.

My surgeon was a bit ... harsh ... with me.  She told me that I had a choice:  choice to hate Georgie and what I must face or be thankful, every day, for her working to save my life.  Put it that way, who wouldn't choose the latter?  "But how?," I ask.  Seriously.  I don't know how to escape the fear and loathing that overwhelms me.

Until I find a way to absorb the ventricle pacing without distraction, I am not comfortable driving.  That is a true burden.  I want to be safe and sensible.  Again ... how do I do this????

SIGH.

I asked the surgeon if it was okay that I wanted to speak with her, to have her listen to me.  She said that it was, but if I needed that again, it would be helpful if I would do so on Wednesdays and be her last appointment before she heads to surgery.  Easy condition to which to agree.  I am so very, very, very thankful that God provided her for me, even if she never ends up repairing my internal damage.

I very much wish I could speak to the cardiologist like that.  But how do I ask for a sooner appointment?  How do I say that I genuinely struggle with the desire to rip out the pacemaker because of what I experience?  How can I tell him that my fear and loathing consumes me at times, despite understanding what good the pacemaker is doing?  How do I ask him to somehow speak to me the words that will help me bear those sensations?

The physicality of Dysautonomia is the bane of my existence.  More so than its wretchedness, I think.  being so blooming aware of so much of my bodily processes that normally would go unnoticed, along with the continual battle with nerve pain.  I did think that, once I had the pacemaker, I would no longer be aware of my heart.  But I still am.  Georgie even paces me more prominently when I lie on my right side.  However, even though me and my heart both clearly prefer me sleeping on my left side, Georgie's presence is still so

And, if I may be blunt, I have not been able to wear a bra, without pain, yet.  So, I wear the bandeau unless I am going out in public.  But being aware of my female attributes does not help with the flashbacks I am experiencing.  How do I say to the cardiologist:  I NEED TO BE ABLE TO WEAR A BRA AGAIN!

I feel so guilty that I am not over the moon with the gains.  I feel the failure because I battle so much the challenges.  I feel ashamed that I am not a proper cardiology patient.

No, not at all....

Monday, December 14, 2015

Present and precise...


Today, I tried to concentrate on getting a few things tended, rather than my appointment on Wednesday with the surgeon:


  • Finished the load of laundry that I started yesterday and folded it and put it away.  
  • Ran and emptied the dishwasher.
  • Took out the recycling and trash.
  • Caught up on filing.
  • Made the 2016 folders for banking, insurance, medical, and taxes.
  • Updated my medical expenses spreadsheet.
  • Remade the bed in the guest suite.
  • Carried up the latest batch of packages for my mother to the guest suite closet.
  • Called about the new defunct Medicare company's premium being listed on my 2016 disability statement.
  • Digitally signed and paid the first month's premiums for my new auto and house insurance policies.
  • Filed an appeal for the lab fee for the biopsy sample that was not covered at all.
  • Cleaned out the ash, brought in wood (one piece at a time), and laid a fire for tomorrow after counseling.


That was enough to exhaust me.  But not really enough to distract me.

My cardiologist emailed and asked that I take an orthostatic blood pressure (lying, sitting, standing...spending time in each state before taking it) every day for a week, choosing different times each day to have a cross section of my days.  I think that he is still pondering the new dizziness that I have been experiencing since the pacemaker was implanted.

I am not certain it is the pacemaker.  It could be the new medication.  It could also very well be something new that is life with dysautonomia.  I mean, I have gotten used to the world-tilting dizziness that I have, the sudden desire to grab onto something and hang on ... doing the latter even whilst leading meetings at my old job.  This dizziness?  This dizziness is subtle waves that wash over me, even whilst sitting or lying down, that give me pause.  I try to remain perfectly still because if I move before the dizziness passes, it become much worse.

I was thinking, though, maybe it isn't dizziness.
Maybe it is lightheadedness.
Or maybe it is the fadedness I experience, where the world begins to recede.
I don't know.
I have been thinking I need to be more careful with words.

Words are what I have been concentrating on whilst struggling to remain present during Georgie's self-tests at night.  I still loathe them with my entire being.  They still strike fear in my heart.  I still long to rip out the pacemaker and crush it beneath my feet.  SIGH.

But I have been working to remain present and, whilst doing so, search for precise words to describe the physical sensations in my body.  I know, now, that Georgie's torture sessions are 60 seconds long. I know that the ventricle pacing is most prominent in the first 30 seconds, building until that 30-second mark.  I know that my panic sets in after about 15 seconds.  I know that the second half of the test is as much relief as it is agony for me.

As to what I am feeling?  I still struggle to describe it.  I did ponder, tonight, that during that 15-30 second period it is not so much that I feel as if I cannot breathe, cannot draw a breath, as that I am choking on something, as if something is filling my throat from deep inside.  I also feel pressure in my chest.  I feel movement in my heart.  And I feel the electrical prods of Georgie's pacing.  Those are the physical sensations.

As to the other, my anxiety level rises as the test goes on and on.  That is followed by shame, wishing I could be big and brave during those 60 seconds.  As to the rest ... I am not sure.

In trying to slog through the self-tests, in trying to find a way to get through them, it occurred to me that I have been able to remain present and to think about what words would best fit, but when it comes to emotions I still flee.   I have been rather numb for well over a week now, having reached a tipping point the night my counselor came to visit me, because of that pain I had had earlier in the day.  I have been there enough of late.

Maybe, too, because I have been picking up and examining a few of the shattered pieces of me.  Such is colossally difficult work.  Brutal at times.  Full of quagmires of shame and self-loathing.

Tomorrow is counseling.  I hope to not go in my pajamas.  Maybe.

Saturday, December 12, 2015

Worth...


It has really bothered me ... what Becky said about not realizing that I do not believe that I am worth care.  Not that she said it.  I remain deeply ashamed that she and my counselor were there that Thursday night in the hospital to witness my meltdown and failure to contain my fear and shame any longer.  I wish there was some way to erase that moment, the witness of my naked soul.  SIGH.

But I do not mind that she said it.  I even mentioned it to my friend Mary and her response, in a way, was even more disturbing ... along the lines of my being surprised at what (all) I think toward myself.  That might not make sense, but the way I read the single, devastating (but truly welcomed) sentence was this observation that if I were to examine what I think and feel about myself even I would be surprised.  Probably by how much I ... well ... maybe I shouldn't fill in whatever her words might be.  But I have been thinking about both what Becky said and what Mary wrote in response.

To her credit, my counselor has not talked to me about that night because she knows how much the thought of her and Becky and the nurses seeing me like that fells me.  I mean, I hinted and hoped she would come.  I wanted her to put the proverbial finger in the dike that was my cracked self I feared would shattered.  And, when it did still waiting for her to arrive, I hoped she would come and DO SOMETHING.

She did.  She got the charge nurse to come in so that I could stumble my way through saying that I couldn't bear the night nurse.  Maybe ... maybe if I had not had the interrogation and if I was not bearing the burden of what happened in the procedure room and if I had not spent nearly two days having to ask folk to take me to the bathroom, I might have been able to spend the night with someone I found so ... combative.  But not then.  Definitely not then.

The thought of the long night and asking that person to take me to the bathroom was the proverbial final straw and, in the spate of a short period of time, I shattered and was helpless to pick up any piece of me.

The Parkview nursing staff were (aside from that one woman) very determined to help me feel safe, to preserve my modesty, to let me navigate my struggles with holistic means, and to maintain my daily routine (where possible).  It is ASTOUNDING what they strove to provide for me.  But even experiencing all that, I did not believe (nor do I now) that I am worth the bother of changing nurses.  You should have just bucked it up, Myrtle.

This article is not exactly what I am thinking, but it gave me pause.  It is about dignity and the chronically ill.

I wish I could use the author's words to help find a way to say what I want to about worth.  Because worth remains very much on my mind.  I am all tangled up between worldly worth and Christian worth and —I guess—what the author writes about dignity:  the state or quality of being worthy of honor or respect.

Do I deserve dignity?  From experience, I would most decidedly and emphatically shout, "NO!"  The author mentions an experience in the hospital where she was shown no dignity and how that affect her view of her worth.  It is not that I am discounting the worth of Jesus dying on the cross for mankind, but when mankind treats you horribly, it is just very difficult for the weight of Jesus' loving sacrifice to be greater than the wounds and burdens the world inflicts.

And, to me, wounds and burdens that are deepened and made greater when folk start telling you what you "should" be doing or thinking or believing without stopping to try and understand how that might be near impossible for you.  All those "should" become more failures to pile upon the failures you already face and the worth of your life shrinks to the minuscule, the microscopic, the inconsequential.

Today, I was trying to finalize some small gift orders and a comment about my changing the order several times was passed along.  Those words hurt.  They shouted that I was not worth the effort to work through finding the right combination of items for each package.  They screamed that I was being a bother and should have done a better job figuring things out for myself, remembering for myself.  I held my nausea in check to finish the order and then raced to the bathroom once I hung up.  Only I didn't make it and ended up puking in front of the Christmas three since I cannot really race anywhere.

I lay on the floor, weeping, wishing I could be anyone but me, wishing Georgie would stop working and so my heart could slow to a stop the way it is trying to do so every darn day.

I tried to be organized and helpful by creating an email of all the things I needed in a sub-divided list rather than a flurry of texts.  Emails can be edited in response as orders are finalized.  Emails can be printed and used as a check list.  Emails, to me, were a way to make my orders easier and less of a bother.  But what I heard ... not, mind you, what was most likely meant, was that my multiple emails with changes were ridiculous and and the very opposite of what I intended: bothersome.

It was weird for me to read the actual definition of dignity because I am not sure I would have been able to define it properly.  And it has melded into the scattered and disturbing thoughts I have had about worth.

What is the truth about me?

As a child, I was not worth rescue. I was not worth help.  As a teen, I was also not worth rescue, not worth help.  When I told of an incidence of abuse that happened in my first church after I became a Christian, the response was the admonition that surely I did not want to hurt Jesus by hurting His church.  If I spoke further about what had happened in that Sunday school classroom, I would be hurting the church.  What good Christian girl wants to hurt Jesus?

I told, here and there, though I am not sure why.
I told and nothing happened.
I told and learned my worth.

Even though I know that I did not deserve what those men dealt out to me, I believe that I did.  I do not know how to change the belief, or the thought.  That is part of the teeny, tiny steps my quaking self is trying to take.  What my counselor was trying to say about my wanting to talk to Dr. Kennedy about the pain.  I am worth her time and attention, her medical care.

Even typing that makes me snort.  I think that I should just buck up and swallow this like all the other  wretchedness that is life with Dysautonomia.  Don't bother anyone.  Just endure, because nearly all of the time there is nothing to be done and with most of my pain, that is the case.

Dr. Kennedy ... she treats me with dignity, by definition.  What if, really, all I want to do is say to her:  I hurt?  To have the terrible pelvic pain acknowledged outside of my own person?  Is that worth the cost of the appointment?  Is that worth time in her rather busy schedule?  I don't think so.  My counselor does.

I hurt.  I hurt and some days I struggle to bear that hurt because I am oh, so weary of all of this.

When I was a summer camp counselor, I was the only non-college-athlete counselor at the sports camp.  I taught outdoor adventure (canoeing, repelling, and archery ... I left the snorkeling to others because the fish in the water terrified me).  That summer, several of the counselors were injured.  The others were taken by ambulance to the hospital.  I had to take myself to the camp nurse, who was actually a pre-med college student, and who dismissed my injury as being whining.  I walked around on a fractured ankle until my inadvertent cries of agony when I moved it just so because too disturbing to the campers and I was called into the director's office.  So, I drove myself to a doctor in town and learned that there was little to be done because I had let the injury go for too long.  He sent me home with a walking cast and dire words about the future stability of that ankle.  Not only did I not receive the same care as others, but I was never told that my injury would be covered by worker's compensation and I was entitled to medical care if I wanted it.

Some of those ambulance rides came after my injury.  Those hurt.

There were lots of lessons about worth.  That summer, I learned my worth once more.  And those lessons, as much as I wish they wouldn't, crowded out anything that you tell me about my worth in Jesus.

That used to be a secret, private, never-to-be-spoken or even thought thought.
But now it are not.
And I don't know what to do with it.

I have been watching this new show.  It is not exactly a good show to be watching, but it is about very, very, very broken people.  In it, there is this episode where the adult child is being humiliated by his parents telling horribly embarrassing stories around the Thanksgiving table.  The parents proffered absolutely no dignity to either adult child, who bore the wounds of having such a negative narrative built out of their lives ... for their whole lives.

My sister taught her children that to be wildly upset was to be a ________, where the blank is my legal name.  Yes, when I was young, I fought with my siblings.  That was wrong and I am deeply ashamed of that time.  But what I am learning to acknowledge is that fighting was something that I could do in the midst of the chaos and trauma of my life.  My name has become a pejorative:  You don't want to be a _________, do you?

I hear, often, from one family member about my only eating white bread.  I was a youth at the time.  I started eating different breads thirty years ago.  But my narrative has never changed.

Watching that episode, I thought about all the people who will be visiting their families this holiday season, girding their loins so as to bear such negative narratives being told and re-told about them.  I wish for them a cessation of embarrassing stories and, instead, a celebration of their lives.  And I think about how easily that sort of narrative is told from table to table,  school to school, office to office,  church to church.

Repeatedly hearing your flaws and failures teaches you your worth.  A wrong lesson, to be sure, but one that makes hearing about your worth in Christ both painful and (secretly) incredulous.   How can that possibly be?

Why do you tell such a negative narrative about yourself, Myrtle?  Because it is the one I was taught again and again and again.

Tuesday, only because I brought it up, my counselor said she was glad I was there that night.  "In the hospital?" I asked.  "Yes," she answered.  Unspoken was the next part ... because you were not alone when you shattered.

I have thought, often, about Becky's observation.  And I have thought, often, about the replacement night nurse.  That very young woman who, essentially, took up the shattered pieces of me and held them until I could take them back.  She spoke to me over and over the words I wanted to hear, the words I needed to hear.  Each time I apologized for all the bother, she cut me off.  She cared for me as best she could that night and, in doing so, mitigated much of the ... harm ... of my meltdown.

What I spoke to her, over and over again, were my fears ... all of them welling up and spilling out and drowning me.  She did not tell me I had already spoken them.  She did not ignore me when I spoke.  She got right down next to my bed and listened to me and then addressed each fear with alternative thoughts.  She did that many times, each time almost as if it doing so was the most important task of her night.  It was confusing and it was comforting.

She did not "should" me a single time.

Why then ... O my soul ... can not that be the lesson of my worth? Why can not Mary's unwavering support over the past few years be the lesson of my worth?  Why can not Becky's friendship of more than two decades be my worth?

No, I think.  My worth is the girl who was taken for sailing lessons and was given, instead, still more lessons on the male anatomy and why she was born into this world ... to service men with needs.

Mary is right.  I would be horrified to know, to really examine, what I think and feel toward myself.  I don't want to know.  But if I do not examine the whys and wherefores behind my own measure of my worth I will never have a chance to escape the negative narrative of my life.  And I very much want to leave that language behind ... especially because I no longer have the strength to keep it hidden deep inside.  Maybe my fa├žade was not all that great, but it was something.

Being clothed in your fear and shame for all the world to see is as wretched as living life with Dysautonomia.

Friday, December 11, 2015

Small steps...


The Medicare insurance agent called today to let me know he was faxing my signed application (I had asked him to do that).  He doesn't mind my nervousness. And he understands that I will not rest easy until I have the new insurance card in my had.

The house/auto insurance agent came by to photograph my house.  He also brought me the termination letter for Liberty Mutual.  And he understands that I will not rest easy until I have both the new insurance card and the automatic billing by Liberty Mutual has ceased and the automatic billing with State Farm has begun.

Both men are named Scott.
Both men have been inordinately patient with me.

The alarm system came and I spent lots and lots and lots of time and energy working on setting it up. That involved standing on ladders.  Georgie apparently does not like me standing on ladders.  That also involved the use of a circular saw.  Georgie does not like me using a circular saw either.  The system works. The signal is strong.  The connection to all the sensors is "excellent," as I heard many times.  The base unit is up and running.  But the sensors are jury-rigged.  I need inset sensors where they will fit.  So, another extremely helpful tech, who took my call, ordered replacement sensors at no cost.  And I begged Firewood Man to drill the holes for me.  I have absolutely no drilling skills.

Even though I have yet to have my first alarm set, I really like the LiveWatch company.  They seem intent on providing unassailable customer service and service that has no hidden traps or long commitments.  I keep waiting for the other shoe to drop!  What's the catch? I keep thinking.

With all those tasks in the waiting phase, I have less crowding my mind.  I want more crowding it.  Much, much more.

Wednesday, I go back to see the surgeon.  My biopsy results were inconclusive.  I preferred to wait until next year, but that is not why I am going, though I wish to avoid the subject.  The repeat test last time was negative.  Let's just assume it will be this year, shall we?  No, I have been having bleeding and pain and no longer feel like I should ignore it.  Plus, we have been doing this dance for a long time about the Risk/Reward of trying to repair the damage I have from the abuse in my past.  The damage causes me pain and problems.  There is a very strong chance that an attempt at repair will result in pain and problems.  A veritable medical Catch-22.  That's another conversation I wish to avoid, because how ... how would I make it through the surgery???

No, this is something different.  I am 99.99 percent sure that after extensive testing and many meltdowns, all we will conclude that it is nerve pain being exacerbated and magnified by Dysautonomia.  But the pain I had some days ago was ranked right up there with the worst episodes of pain in my entire life.  I vomited and fainted from it.  SIGH.

I really wanted to talk to the doctor about it.  But I keep thinking that I would just be waisting her time.  Mostly because she's already said the next episode would necessitate on pulling the trigger on finally doing the sonogram she's talked about for a while now.

Sonograms mean things inside me.
I do not do well with things inside me.
I am weary of not doing well.

I mentioned it to my counselor and she told me to call, to let the doctor know I wanted to talk to her.  I asked why, when I knew what she would say and what it probably is.  My counselor replied, "Because you want to talk to her."  To me, that isn't enough.  To her, it was more than enough.  I deserve to be cared for in my body and in my mind.

SIGH.

With things stilling in my mind, I texted my counselor.  [This outside-sessions access has me discombobulated.]  I asked her for a thought to rehearse.  Something small and non-threatening, baby steps on trying to work on thoughts.  She had two for me:

Dr. Kennedy is safe.  This is important because it is not saying that I trust her, raising all the upsettedness around the idea of trust and my ability to trust or lack thereof.

This invasive procedure is to help me, not harm me, and is unlike the trauma I have endured.  "Trauma" is a word the counselor uses often, reframing what happened by focusing on its impact on me rather than my thoughts about how, given how often it was, that I somehow attracted those men.  After all, the common denominator was me.

I am wondering ... I am wondering if I asked the Doctor to speak these thoughts to me ... what her response would be.  She already says good words when I am hurting there.  Maybe she would be willing.  Maybe if she did it would help.  The external is still so very important to me ... having good things come from outside of me, poured into my ears.

Still, even with trying to think positively about the appointment, my fear is beginning to rise.
Still, I cannot see a way through enduring what I must to investigate the pain.
Still, I cannot fathom surviving how I feel after.

Yep, I wouldn't mind a supernova.

Thursday, December 10, 2015

Call me Procrastinator...


I have two tasks I would like to get done before the Great Holiday Visit:  1) To hem and put up the new shower curtain liners (my current ones are moldy) and 2) run the carpet shampoo-er.  The latter might be too heavy for me and I am not sure how to proceed.  But the former I can do.  Only I am still not a seamstress.

Because the circular rod for my antique tub was hung too low, all shower curtain liners end up on the bottom of the tub.  Last time, I simply lopped them off.  But these flap in the steam and stick to your body (rather annoying) without the magnets on the bottom.  So, I want to fold up the liners and then sew that fold flat.  Ideally, I want  to stick some magnets in that fold so that they can stick to the top of the sides of the tub and, thus, have more of a chance for flat liners and a lack of flapping about.

The real problem is that the ring is too small for the tub and, thus, the shower curtains are too close to the person in the tub.  But replacing one of those rings appears prohibitively expensive, because they are all of a piece with the faucet, riser, and shower head.  Really, really, really uneconomical.

I have thought and thought and thought about shortening the shower curtain liners, but have not progressed past thought.  I was fully prepared, today, to open the deacon's bench and pull out the sewing machine (using only my right arm).  However, I never made it that far.  I am still very, very, very intimidated by the thought of using the sewing machine.  SIGH.

I did drag myself up to the attic to fetch the few decorations I kept in my downsizing.  Walking those stairs is hard, because it is the second set of stairs in a short distance.  But it is also hard because they are in dire need of cleaning.  As in I have not cleaned them in four years.  I am a bit embarrassed to admit that they are littered with dead flies ... the foolish flies who came down my attic vents and couldn't figure out how to fly back out, perishing in the summer heat.

I ended up carrying back half the box's contents because I just didn't want to "crowd" my rather visually restful house.  I am not sure if it is because I spend the holidays alone or because I am single or because I am simply a wallflower hermit, but decorating is not all that exciting for me ... which ... makes me feel ever more the alien ... like something is wrong with me.

I put out a few things and hung the glass icicles on the Christmas tree.  I had forgotten that I had a set of a dozen (11, actually because one is broken) spun glass ornaments, so I hung those two.  My favorite is a nativity scene because I am in awe that someone could make it out of glass, stable and all.  I also have a gold, wire mesh star that I have kept for the "one day" I ever had a tree.  Until I opened my box, I had forgotten that I owned one.  So, I am thinking that my tree is pretty well adorned now, save for a tree skirt.  Yes, I hunger for a beautiful, old-fashioned tree skirt.  Silly Myrtle.

Today, I also set out to Google alarm companies again.

I am a bit bothered that Firewood Man was able to both seal the gutters and take down an entire tree without me hearing him.  And I sleep with my windows open!  I am rather dead to the world when I do fall asleep and that doesn't seem all that safe to me.  With the two murders on my street, I am a bit ... more aware ... of the need for safety.  Well, that is not right.  After all, I put in two-sided, keyed deadbolts on all my doors.  I also added flood lights to the back porch and garage and put a light on the side of the house where the basement entrance is.  But I have not missed the alarm system I had in Alexandria as much as I have of late ... since reading of the second dead body on Kinnaird Avenue.  SIGH.

The problem with alarm companies is two-fold:  1) I do not have a land-line and 2) the cost of monitoring.  I finally found a company that has a wireless option for the price I wanted to pay:  $19.95 a month.  All the quotes I have received over the past few years have been between $34.99 and $39.99.  I wanted no more than $20.  LiveWatch is my answer.

Buying the system just now ... at this financial crisis sort of time ... does not make sense.  But being and feeling safe does.  Maybe that's it.  Maybe it is the feeling safe.  With the work I am doing in counseling and the struggles I face in the hospital, I am most decided not feeling safe.  Hmmm ... I had not made that connection until this very moment.  I suppose I should add that thought to my list of thoughts I bring each week to my sessions.

There is a $99 charge for the system I chose, a $19.95 activation fee, and the first month's monitoring.  The former cost is on my credit card.  The latter two fees will appear once I am all set up, which should be Saturday, after 5:00 when I have my technician appointment.  I will be very, very, very thankful once the house is armed.

I think, too, that part of this is thinking about how much help I need and how I need to find ways to get help when I can, which is much harder to do than it is to say.

What impressed me the most about the company was how I was treated.  The sales guy did not try to up-sale me.  He rather patiently walked me through the options and repeated the information several times for me, because I was nervous about making a commitment ... only there is no commitment because it is month-to-month.  All I would be out is the equipment, since in months 1-12, it has to be returned if you cancel.  But after month 12, you can keep it and use it with other companies.

The second guy helped me make the system configuration choices, set up overnight delivery, scheduled my technician appointment, and walked me through setting up my online account where I can make changes to my system.  He was soooooo patient, telling me what to type and where to click.  It was the easiest new experience I have had in the past few years.  More relief for me.

Ought that not to have buoyed me enough to hem the shower curtain liners?????

I have been a tad horse ... a smidgeon horse ... for a few days.  I have started to cough here and there ... just a tiny bit.  When I cough, phlegm flies into my mouth.  Again, just a bit.  But enough to bother me.  And my chest hurts a bit.  Just a tiny bit.  Right under my left shoulder blade.  I am not, however, getting sick.  I do not have access to a GP doctor until January 26th!  I can't get sick right now.

The house and auto insurance agent was supposed to be here today to take photos and give me a termination letter to sign.  However, he canceled and rescheduled for tomorrow.  In anticipation of his visit, I put on a female upper undergarment.  It hurts.  And it struck me that the reason it hurts is that the nurse must be right about the swelling taking a long time to subside.  The incision, though, is healing well.  And the bruising is getting better.  Really, I am healing far more quickly than I thought I would.  A silver lining, eh?

Maybe tomorrow.
Maybe tomorrow I will actually measure.
Maybe tomorrow I will at least get the shower curtain liners all prepped for sewing.

Maybe.

Tuesday, December 08, 2015

Connections...


Yesterday, I ventured out for the first time since the pacemaker surgery (other than my 7-day check).  It was much harder than I thought it would be.  Primarily, I was bloody exhausted last night and ended up sleeping 12 hours without just three wakes.  A modern day miracle.

First, I went to fetch something that, if I really and truly want to be a surprise, cannot be mentioned here on my blog for two weeks.  Becky was on the phone with me and coached me through the purchase, thankfully not laughing at my marveling of how much things had changed.

Then, I went to an appointment with an insurance agent.

Each year I have been here, my auto and house insurance has increased between 15-20%.  It just drives me nuts when I open my new policies.  Each year, with much weeping and gnashing of teeth, I go out on the great World Wide Web and collect insurance quotes.  Each year, I cannot find cheaper options.  This year, when I unexpectedly found myself without a Medicare insurance company for 2016, I unexpectedly found myself introduced to an insurance agent.

I had been wanting to try and find an independent agent.  For one, mine with Liberty Mutual, the one to whom I was transferred, has never met with me nor taken my calls.  He utilizes assistants ... a revolving door of them.  Basically, I have no human being to call for help.  That has bothered me as I have come to face the fact that I need help.

I need help on many fronts.

So, although this was a State Farm agent and not an independent one, I took the appointment offered to me because he knows my Social Security ... counselor??  He knows the woman who took my application and has continued to help me.

I have decided to jump ship from Liberty Mutual primarily because I would have a human being to call.  And this human being—albeit a bit old school—was kind and patient.

I need patient.

I do not have my 2016 house policy to compare quotes, but the 2016 auto quote was beat and, I think, the house policy might come to a tie or better.  I won't know, for sure, if I jump ship.  But my auto policy renews on the 16th and I would like to have a clean break.

The one difference is that to pay monthly is $1 more.  Whilst I could, clearly, be disciplined enough to save monthly for the 2017 policies, I do not have enough funds to just dole out annual premiums all at once.  Of course, though, if you think about it.  If took the money out of retirement, I would definitely not earn $12 of interest on the $1,500 or so dollars, so it would be better to save money myself, earning a bit of interest, than pay the monthly service charge.  Gosh, that's too much thinking for me just now.  However, I did think enough to find value in the human being aspect.  And so I made the call, today, to switch.

Anyway, from that meeting, I went to Target to fetch prescriptions and, rather exhausted, I hoped to go to Taco Bell on the way home as a reward.  Sadly, there was a line of 14 cars already queued in the drive-through.  I turned around and went home.

Firewood Man then came over, with his friend, to tackle the toilet in the basement.  A while ago, I sat down on it and it wiggled.  Toilets should not wiggle.

As I feared, it was not merely a bolt tightening issue.  It was a broken flange ... an ancient broken flange issue.  You know ... the part of the toilet set in the concrete!   Tim and his friend went to Menard's and learned about a "fix" rather than a "repair."  The latter would require digging up the concrete.  There is this metal ring that can be set over the flange, drilled into the concrete, to which the toilet can be set.  They installed it (with much scary noise) and the toilet is sound and secure once more!

Today, as I noted, I slept long into the afternoon.
Long enough to wear my pajamas to my counseling appointment.
Not long enough to east the exhaustion.

Today's session was hard and yet ... not.  It was hard in that I turned over in my mind the connection we made to my gown being removed and the nurses trying to comfort me to abusers who "comforted" me as a child even as they hurt me.

Such is wrong.
Wrong is not even a strong enough word.
There are no words.
Not for me.
Not yet.

SIGH.

Feelings of those flashes of memory have been drowning me, terrifying me, and leaving me oft insensible, curled up in a ball in the corner of my closet.  It was too much for me and I sort of ... shut down Friday night after my counselor left.  I dislike the numbness, but I welcome it.  I welcome the cold, distance from which I can at least tolerate all of this.

Disassociation can be restful, in its own way.

Today, as if I was holding the matter in my hand, I turned it over and over and over again, trying to find the words I needed.  I didn't really, but I did for one part.

I thought about the construct of "comfort."  Not the definition of the word.  I thought about all that goes into comforting a child.  The tone of voice, the words, the movement of hands, the position of body ... all those things.  It wasn't just words.  It is the whole of comfort that has been violated with me as much as my body.  It has been twisted to such an extent that the idea of comfort frightens me; the idea of comfort is something from which I turn away.

We talked about that, which helped clarify the whys and wherefores of my response to what happened in the hospital.  In a way, the fact that I did not get versed right away, the fact that I was prepped whilst still lucid, is a blessing, in a strange sort of way.  It provided a connection I needed.

One of the things the counselor said was that—although seemingly impossible to me—perhaps I could equate comfort to that which I receive before comfort was twisted so for me.  The comfort of a very, very, very young child.  If I remember so little, how could I remember then?  But something flitted through my mind.

Becky kissed the top of my head in the hospital.  I liked it even as I felt ashamed that I liked what, to me, seems like something reserved for children.  It was/is a conflict for me, but not one that drowns me.

I also thought about how much it meant to me when I received blessings from a pastor, felt the cross traced on my forehead.  I asked, after changing churches, for a blessing, and was essentially told that those were for children.  But I am a child! I wanted to protest.

Childish, to me, is negative.  To be childish in thought or behavior is something about which to be ashamed.  Ashamed of how I felt about the cross on my forehead.  Ashamed of how I felt about being kissed on my head.

It is hard to find words to write about this, about what is so very connected, now, in my mind.  With my counselor, even though I was fumbling about, she understood and tried to give me the words, though we never reached what I thought was the whole of it, something that could proscribed in height and width and depth and breadth.  

In an attempt to not carry about my upsettedness, I left off trying to speak words I thought fit when I left her office.  Posting here not withstanding.  However, another thought flitted through my mind:  I wonder if I grabbed onto the comfort of the Gospel as written of in the Christian Book of Concord because it it, in truth, the only kind of comfort I can understand.

I understand it because I experience it.
I understand it because it fills me despite anything I do or say.
I understand it because it resonates with my soul.

Oh, how I miss the comfort of the Gospel.

[Excuse me whilst I go puke after writing such scary stuff.]

Saturday, December 05, 2015

Do something...


Today, I wanted to DO SOMETHING.  I have been doing little of late (understandably) and doing always helps my upsettedness.  Though I was rather exhausted at the end of my brief labor, I DID SOMETHING!




It is possible, barely, to hang blinds with one arm.  I admit that there was much foul language taking place in the low moments of my attempt to hang the blinds, but they did help galvanize me across the finish line with this first window.

[Yes, I am steadfastly ignoring the need for sanding, priming, and painting over the old screw holes in the top of both window frames.]

My mother said she would hand them when she comes in two and a half weeks.  But that would be two and a half weeks of BRILLIANT sunlight FLOODING my room in the mornings.  I do believe having those dusty paper blinds gone has helped my asthma, as well as the medications, of course.  So, I do not regret not putting them back up after cleaning all the lace curtains.  However, it is rather difficult to sleep when you are being BLINDED by the sun.

I should have started with the window on the other side of the bed, where the light shines brightest.  However, I am not that smart these days.  That would have taken far more thinking and planning that I am up for at the moment.  However, the second window was rather easy, having conquered the rather steep learning curve of the first one.

Part of the problem was all the trips up and down the stairs.  You see, I could only carry one set of blinds at a time. Then I needed a trip for my drill and level.  Then I needed a third trip for the drill toolbox because I need the extension thingy I rarely use.  Finally I needed a fourth trip (the latter and this one all the way down to the basement) to fetch different screws because my drill is not powerful enough for longish screws.

Amos did not care for the commotion.
He just wanted me to hold him.
I wanted that, too.




I am rather nervous about having seven visitors all in the house, especially because peaceful accord does not always accompany everyone all together, and have been looking for ways to make the visit easier.  Becky, rather helpfully, pointed out in August, during her visit, that it would be good to have a second robe hook in the master bathroom.  So, despite my near frenzy over money, I bought a second robe hook.  It was on the deacon's bench, too.

Installing the matching hardware fixtures in the bathroom was a nightmare the first time round.  It literally took me hours instead of minutes.  I was worried I would not remember the work-around I figured out last time, but I did.  So, this installation too just a couple of minutes.  And another trip downstairs for a tiny screwdriver (I thought it needed an allen wrench).

After resting from my labors for a long while, rather clumsily, I built a fire with the rest of the wood the counselor brought in for me.  I spent the entire even just sitting and doing nothing.  No reading or streaming or listening to music.  I just held Amos (for which he was in seventh heaven) and watched the fire.  Stillness.  Sweet, sweet stillness.

I was going to fetch prescriptions today, but the pharmacist told me I have one filling tomorrow.  I was then going to go tomorrow, but already I have decided that I shall wait until Monday.  Yes, I am a bit nervous about driving.  I also am dreading the pain of putting on a regular bra for being out in public.  And I want Georgie to behave whilst I am out and about.

I will need milk.  That will goad me into going.  Maybe I will need another fire on the morrow to gird my loins for going out??

My reward for my labor?




Bacon Pineapple Bites!  Mmmmmm!  This was my second last meal before surgery (so I could share a meal with Becky after she arrived).  I roasted these at a higher temperature than we tried at first. I think it made for a better glazing of the brown sugar.  Wickedness really.

Maybe I should gird my loins with more bacon pineapple bites?????

Friday, December 04, 2015

A brutal day...


[Catching up.]

My counselor came by and confused me, confounded me, really.

Instead of sitting and making an office visit out of my living room, my counselor worked around the house for me, talking with me as she did.  For one, she put together the shower seat that had arrived.  Not being a tool person, she had some difficulty, which made me smile, even as I was weeping over what I was trying to speak.  I finally rescued her from the washers, set them properly, and let her finish.  She then carried it upstairs and put it in my antique cast iron freestanding tub.

My mother has been sending me things she things are needful for the Grand Family Visit.  My beloved UPS driver (who calls Amos "Cujo" because of his barking) has been mercifully bringing in the boxes and setting them on the deacon's bench.  My counselor opened all the boxes, put the items in the basement for me, and then cut down all the boxes and carted them to the recycling bin.

She also brought in firewood so that we could have a fire.
I adore fires.
BLISS.

For me, we did not talk the way I thought we would.  Or rather I was still weeping all over the place, talking all over the place, and rather fearful all over the place.  Shame still washed over me, drowning me.  However, she did repeat what she had emailed me: backsliding is understandable, even normal in my situation.

She tried to talk to me about the brain and why I now cannot talk about things that happened without reliving them, which makes for all sorts of upsettedness and feelings I want GONE.  I did not really understand (or follow) what she was saying, but I know she will repeat it.  She did say something about how, next week, we can start trying to build a frame or boarder or safe space in which that reliving can happen, where I can also know that leaving that space means leaving all those thoughts and feelings until later.

I really would like to leave the boat.
And that room.
And everything else that is coming to the surface.

It was a ... good end ... to a most particularly difficult day.

The worst part about dysautnomia, for me, is the pain from malfunctioning nerves.  I've tried to hem haw about the subject before, but the reason that I called the counseling center, to try with a new counselor again (non-profits tend to have quick turnover in staff, even counselors) was because there is this particular pain that I experience, a few times a month, that is so devastating I want to die.

There it is.
I want to die.
Immediately.

I see no way through the pain, no way through what that pain brings back to my mind ... or where it takes me.

Over the years, before the pain got so bad, I tried to get help for it.  I have seen four colorectal surgeons.  All said the same thing:  There is nothing to be done.  SIGH.  Whether the stool is pressing upon the scar tissue I have or just hitting a nerve in a very specific way, there is nothing to do.  No pills.  No surgery.  No physical therapy.  Nothing.

So much hurts more now.  Everything else I can ignore.  All the other exaggerated physiological responses Dysautonomia triggers I can ... eventually ... deal with.  But not this.  I called in desperation to ask for help with absolutely no hope that anyone could help me.

I still am not sure, but I find the counselor so very ... curious ... and I find hope sneaking in despite my general outlook on the issue.

Only this morning, the pain was so very bad, I was certain I could not get through it.  I very nearly did not.  Vomit covering my pajamas, sweating, and stuffed into the small space between the tub and the cabinets (the tightest space I could find in the bathroom), I just wanted to die.  Even after it eases, the pain lingers a too-long time.  I cleaned myself up and then crawled into bed to clutch Amos until it was all over.  Finally, I slept.

I woke.
I retrieved the mail.
I learned my Medicare insurance company is folding.

Open enrollment ends Monday.

I spent the entire day weeping and vomiting and trying to use www.Medicare.gov to figure out what plans are available, trying to discern which of the 13 options would fit my medications and doctors best.  If I enrolled via the number given for the two plans I thought might work, I would need my original Medicare card.  I haven't needed it in three years.  I didn't know where it is.  I searched high and low for it, weeping and vomiting and wanting the sun to go supernova .... and thinking of other ways I could make everything STOP.

Searching through the plans revealed me two more financial blows.  The first is the 2015 cost for outpatient services. I thought it was the same as the hospital, but it is not.  Medicare classifies the pacemaker implantation as outpatient.  I knew that going in ... but I forgot about the difference in cost.  Instead of having a daily rate (co-pay), I will owe 20% of the entire bill.

The second blow was that two of my medications will jump from tier 1 drugs to tier 4.  Yes, tier 4!  In short, those cost of those two drugs will jump from $15 to $401 come January.  This change was the same on all 13 formularies.  Plus, there is another drug that is going from covered to not covered, so I will have four of them for which I will have to pay the cash rate.  SIGH.

When my counselor was here, my phone rang thrice.  I ignored all three calls, but she asked me, on the third call, if I wanted to take it.  Since I was huddled before the fireplace and she was over near the phone, I asked her who was calling.  It was the insurance agent I had remembered I used the first time round and had called around 1:00 PM.  It was nearly 9:00 PM (my counselor had evening appointments she had to take before coming to see me).  I missed the call and, feeling downtrodden and pessimistic, I was not going to call him back, but she encouraged me to hit redial.

I did.
He had already done the research.
HE HAD A PLAN!

The poor man had been working until 9:00 the past few days, since the news broke, trying to help those of his clients who were on Advantage Select.  He explained why it was THE PLAN for me (it was one of the two I thought might work) and so I asked him to start the application.  I asked him to mail me what to sign with a sticky note telling me where to sign because forms are increasingly difficult for me.  He said he would get the application out in the mail tomorrow (he's working the whole weekend) and he would highlight in yellow where I needed so sign so there would be no confusion.  Because I have already worked with him, I did not need to show him my original Medicare cards.

As much as I was (and still am) relieved, it was like the very fragile, post migraine period.  The great worry and fear over insurance ended, but the cessation of the trauma of all that suffering, its absence, was also difficult to process.

I had no hope this day for help.
I wish I had remembered him so that I could have had hope.
Scott Davis, merciful insurance agent.

A rollar-coaster, brutal day.  A day following day after day of pain and suffering (pacemaker recovery) and confusion and adjusting and loss and fear and shame ... much, much, much shame.

I really don't understand my counselor, why she came, why she wasn't ... clinical ... during her visit ... the way pastors have been when they visited.  But I do so appreciate the fire.  Its ... stillness.  I appreciate the visual rest she gave me by clearing off the deacon's bench.  And I appreciate the labor she saved me in putting together the shower seat and taking care of all the cardboard boxes.  I appreciate, I guess, that I was a person with needs, not merely a problem, whilst she was here.

There remains no answer for how to get through that particular pain that I can feel.
No real answer for the blunt truth that I am weary of battling and have no rest.
No answer as to how to survive when it happens next time.

Thursday, December 03, 2015

Then and now...


[I forgot to post this, so I am leaving the date of when I wrote it.]

My counselor is coming to the house tomorrow, since I have missed appointments and am still not that much up for going out and (apparently) there are all sorts of germy folk going to the Women's Bureau at the moment and I need to be away from germs, but am also, still, really struggling and need ... something.  I mean, I was in the middle of opening (okay ... at the beginning of trying to open) this huge can of worms before all this pacemaker stuff happened and the pacemaker stuff turns out to be its own can of worms that is mixed up in a rather confusing way with other worms and I need some of those worms to go back into the can or in the soil or any place else than crawling all over me.

[Yes, I am not well known for skill with metaphoric language.]

It was really weird for me that once the counselor set a time to visit some of the frenetic feelings of fear and shame swirling around me eased a bit ... almost as if they knew they would have a place to ... be ... again. It is easier to try and think about opening cans of worms if you know that there is a safe place where you will be when you maybe try to actually feel and stay present in that, to try and speak what you were thinking and identify what you were feeling *then.*

Mostly, I think the latter is impossible.  

In the procedure room, there was a lag in getting me entered into the computer. I like that Parkview tracked my every movement by entering my location.  However, I was moved into the room and, I believe, I was not checked out of the room where I had been so the computer would not let them check me into the room I was in then, which also kept them from ordering the versed for me.  Because of the delay, I was aware of more of the prep than I could bear.

At one point, the nurses unsnapped my gown and it fell off my shoulders. I grabbed the blankets to keep my chest covered and tried to get away from the bare hands on my back, starting to apply the stickers for the leads.  Because I was starting to fight them, the nurses murmured soothing words to me.  It is that moment that I am finding difficulty escaping.

Last night, my counselor called to talk.  As we did, I tried to tell her about being so upset.  She asked question after question until I made the connection ... until I understood that the fear ... and shame ... I was feeling was from the past.  You see, folk who are abusing children often speak words of comfort to them so as to keep them calm whilst it is happening.  It is sick and horrid and twisted and makes the entire experience more confusing, more painful, and more difficult to ... to escape.

Ever since we talked about the sailing lessons, I've been unable to leave the boat.  Finding myself stuck back in a second terrifying place in my past has been seemingly insurmountable ... overwhelming ... crushing.

Knowing that she will be coming by to talk tomorrow has brought a bit of ease ... just a bit.  I want to leave the boat ... and that procedure room.  I do.  I just don't know how.
  

Wednesday, December 02, 2015

Not that easy...


Today's visit to the pacemaker clinic part of the cardiology center was actually worse than I feared it might be.  The testing was, at least.  It was much more difficult than that in the hospital.  Would that it were Georgie might never need interrogating again.  Sadly, that is not the case.  I have to return in eight weeks.  If my leads are not healed then, I have to return again eight weeks after that.  That was not what I heard in the hospital.  I also had another EKG (more removing clothing and having hands touch me).  Each time I go, I will have to have an EKG first, then remain wired up throughout the interrogation.  SIGH.

I learned that it is the ventricular pacing that I abhor with my entire being and want NEVER to experience again. However, given that Georgie is already pacing my heart 71% of the time, getting the tech to turn it off is not an option. I am very despairing over all this.  My next torture session with the pacemaker team is scheduled for January 28th. Again, I'm hoping for a supernova before then. Today was brutal for me. How do I walk in there next month and do it again???

Just do it, Myrtle, like you did today.
It is not that easy.
To tell me such is not a kindness, nor is it wise.

Georgie ventricle paced me a bit ago, despite my rather desperate entreaty that she cease all such activity. It was, actually, the first time, I believe, she's done so this strongly when my heart rate was not high, a mere 87 BPM. That is part of what I learned today. Georgie is not pacing me down, per se, but she is correcting what is making my heart rate skyrocket so that my heart will calm down on its own. Georgie can actually only force my heart to beat faster (which she apparently is doing all the bloody time, if you take a gander at my strips); she cannot actually slow it down, although her actions result in that. I am still in shock, however, that she's pacing me 71% of the time. I thought it would be, maybe, about 10%. I didn't realize just how dependent I was on the theophylline for life!

The tech changed one tiny setting that she said might make things a teeny bit easier for me, but she gave no guarantees. My pacemaker has this fancy setting where it can sense both the strength of your heart beat and your movement. So, for example, if you are a biker with bradycardia, and you are biking, many pacemakers wouldn't help your heart rate because they wouldn't sense movement in the chest. By sensing that the heart is working harder, this pacemaker can help the biker who needs a higher heart rate to bike.

For me, as an example, if I am distressed and my heart is working harder as a result of the stress hormones flooding my body, Georgie does not need to actually make my heart beat faster. Translate that: Meltdowns do not need a higher heart rate. So, the tech turned off that feature.

She switched that setting on Georgie to sensing movement. This is because—as much I don't mind sitting on 60 BPM where pacing in the atrium is but a tiny flutter I can learn to accept and the ventricle is rarely involved—I actually need a higher heart rate if I am going to be walking about the house, cooking, cleaning, organizing, bathing Amos, or tending fires.

I very much mind the need for ventricle pacing. Very, very, very much mind it.

[Therein ends your lesson on pacemakers.]

I do well with the discreet.  The specific.  And many, many, many repetitions.  Yesterday, when the nurse from the hospital called, I asked when the vaccines might stop hurting.  I was rather discouraged to wake up Saturday in pain and find my arm all swollen and red in that spot.  Each day it has gotten worse.  She told me: Seven Days.  So confident was her answer that it cheered me the tiniest bit.  Today, Day 5, the pain was finally palpably less.  I can believe that Friday will find me better.
  
In the hospital, after I awoke, I was in a panic because of the pain.  All I could think was that Becky would be gone in two days and I couldn't possibly tend myself in that condition.  I was whimpering about the pain when that nurse got right down close to me and very adamantly told me that in 12 hours I would start to feel better and in 24 hours I would know that I would eventually be okay.  She was right.

Today, I wept my way through explaining that I could not wear a bra (nothing more than that bandeau thingy I bought for the surgery) and I could not sleep on my left side.  I am a left-side-sleeper.  If I roll to my right, this pesky nerve gets irritated, my arm goes numb, and it becomes inexplicably painful, all of which wakes me up.  I have been, also, despairing thinking that I will never be able to sleep well again.

When I turn on my left side, the pacemaker itself is pressed upon.  Very, very, very painful.  Actually, feeling it beneath my skin is both disconcerting and painful.  I am not sure why it is that a bra is painful.  Mine does not hit my incision.  The whole matter is distressing.

The tech explained that almost every female patient comes to the 7-day interrogation braless.  [Well, I thought, that was not in the booklet.]  She explained that even males have trouble sleeping on their left side.  And she was discreet in her language.  Specific.  Very, very, very repetitive.  Give it two more weeks, three at the tops.  Life will be different then.  I will be able to sleep on my side.

I very much want my life to be different.

On the plus side, I have not coughed at night since Friday night.  I am so utterly relieved to be back on asthma medication, even though I was staggered to learn that Medicare is not covering what I need: duel meds to blunt the effects on my heart and blood pressure.  Money wise, I cannot even fathom number crunching for all of this.

Another benefit was the three rounds of IV antibiotics (maybe four because I am hazy for the first few hours).  Last fall, I became ill with The Crud twice, sick for about eight weeks total.  Ever since then, I have had a nose, sinus cavity, and throat full of green and bloody mucus.  Since I didn't have the tell-tale signs of a sinus infection (facial pain), I was eventually diagnosed with nasal allergies (despite a lack of symptoms for those) and put on medication.  Now, after THIRTEEN MONTHS, there is no more green, bloody mucus that I have to deal with day after day after day.  I knew I had a sinus infection and I secretly hoped, rather fervently, the antibiotics I would get for the surgery would help.  They did!

A third benefit is that I have not been short of breath since the surgery, neither have I had any of the palpitations:  thundering, pounding, flip-flopping, and fluttering.  To be ever so much less aware of my heart has been a blessing.  More so, I welcome breathing better.  Huffing and puffing my way from the GREEN chair to the bathroom was rather distressing.

A fourth benefit is that I am no longer on theophylline, with regard to no longer being on a medication that conflicted with so many others, including two that I take, and others that I was prescribed without checking for conflicts. And it appears the cardiologist was right in thinking the theophylline was contributing to the palpitations.  

I cannot say, yet, if the beta blocker is a blessing.  And, as I have written in not quite so many words, I am two minds about the pacemaker.  Clearly, without theophylline, I need the pacemaker.  But is it a plus? Right now ... I just cannot see the positives.  Nor can I imagine living with the ventricle pacing.

Today, when it started and got worse and worse and worse, I tried to scramble out of the chair.  I wanted to flee the room and the connection to the computer/machine controlling my heart.  I am not strong enough to face that again.  I am not strong enough to face it at home.  I flee to the closet.  I curl in a ball in the corner.  I cry out for Amos to come climb in my lap.

I have been told that it is normal ... expected... that I would slide backwards, that I would find myself in pieces again, somehow severed from the hope that I had about getting better with regard to my past.  I do not feel normal.  I feel wretched.  And, now, having made the 7-day appointment, all I want is to have no one near me, no one touching me, and no one taking me to the bathroom, until my guests arrive in three weeks.  No one to watch me writhe in pain or battle nausea.  No one to witness my mental collapse.  No one to foment my ridiculous need to appear less ill and more together than I actually am.

SIGH.