Saturday, January 30, 2016


Gosh, it has been a while.  Life.  Stuff.

I spent days on end dealing with the sewage that was backing up into my basement toilet.  Yes, the problem did not go away.  Sadly, after spending $350 having the sewer line snaked, it was determined that the sewer line needed to be dug up.  Dug down.  Spend lots and lots and lots of money.  SIGH.

It was a long process because the weather turned frozen, just as I was trying to deal with sewage in my house.  Sewage!  Using water brought it up and out of the toilet.  Snaking brought it up and out of the toilet.  Camera-ing the sewage line brought it up and out of the toilet.  Day after day I had to clean up sewage from the basement floor, scrub the crud encrusted toilet.  Over and over.  I lost my appetite.

I am left with a mammoth pile of dirt over my ex-hole.  The digger said that it could take 6-12 months to settle back down.  Amos loves the pile.  I do not.  But I am very thankful that no more sewage is spilling up into my house.

The man who came to camera came without notice, so I did not hear him whilst I was sleeping.  That made him rather angry.  I was awake when he called to come back by and his anger frightened me.  He was big and tall and very unhappy.  After he was done, he told me that in order to dig down to the pipe, unblock it, and add a clear-out for future use, they would be going through my gate, cutting down the forsythia, digging up my rock river, and most likely crushing the stepping stones and bed ending where the excavator would be passing through to the blockage location.

I grieved those losses, especially because I am no longer in a position to do yard work. I could not restore those things.  And I just adore my rock river.

When the digger finally came, I begged him to spare the landscaping and the tree, to spare whatever he could.  He said he understood my agony and meticulously snaked the excavator through the side fence and over to the blockage.  He cut right up against the edge of the bed and then, after a few few, went beneath it to get to the blockage.  Yes, he saved all but three bricks from the edging.  I remain in awe of what he did for me.

I had to way another two days for the line to be cleared out because it was too cold for the jetter to work outside.  Two more days of sewage from even the scarce water I used.  Two more days without washing my hair.  UGH!

I struggle with things being over.  I had my sewage line dug replaced in Alexandria.  It was a known problem not disclosed at the sale of the house.  It was so expensive I had to take out a second mortgage on the house.  And I thought I had learned a hard lesson.  The main problem here was that a prior repair to the sewage line here, a known problem that was not disclosed either, was done rather poorly.  The replaced section was not fitted properly and there was a lip that things were catching against.  The build-up eventually became unsustainable, the toilet paper a sieve that no longer worked well enough for the water and solids coming through.  ICK.

In Alexandria, the sewer line replacement was a tremendous blow, but it was not gross.  No, the hardest moment of being a homeowner in Alexandria was dealing with the mice ... was having to kill mice and baby mice over and over and over again.  I half-joke that it traumatized me.  Really, it did.  How I killed them was with sticky traps, so I could hear their squeals.  It was awful.

This sewage thing was awful, too.  To have to clean up poop water over and over again, to have to scrub the stuck on sewage off the toilet and floor over and over again, was rather difficult for me.  Maybe it was more difficult because I am, still, struggling with the pacemaker.  Maybe it was more difficult for me because of where I am in counseling.  Maybe it was more difficult for me because of the meltdown at the doctor's office that still lingers.

As I said, I struggle with things being over.

My incision has developed hypertrophic scarring.  The pain from it is unbelievably intense, a lot like bee stings ... constant bee stings.  When I showed it to the new GP, I was ... thankful ... that she was concerned, because I felt like a complainer.  She said that she would like for me to wait another month before she sends me to a wound specialist, but there was some things that could be done to minimize what is happening with the overgrowth.

[It had to do with connective tissue issues.  A lot of folk with dysautonomia have connective tissue issues.  That may be part of the problems I am having with my joints.  SIGH.]

Even with her, with the new GP, I am struggling with things being over.

She was so understanding I couldn't believe it.  She had no problem with my anxiety and tears and fears.  And she actually wants to see me even more frequently than I hoped for until she learns more of my health.  As she put it, I am no longer "medically homeless."  Truly, more than I could have asked for.

And yet three days of struggle trying to get my Tier-1 and Tier-2 prescriptions transferred to the online pharmacy where I can get them for free, I am deeply afraid the new GP will change her mind and fire me.  I suppose I am not yet over being fired by the replacement GP.  She was not the doctor for me.  I needed to find a doctor who understands.  But being fired as a patient, being told that I don't need medication but needed a psychiatrist.  No matter that just a short while later I found myself getting a pacemaker.  Clearly, I have medical problems!  No matter that my counselor, despite what she has heard and seen, keeps telling me that I don't need a psychiatrist.  No matter that I have had three doctors now tell me that I am not crazy, that I am ill.  I still fear the doubt and the judgment.  I fear the labels.

I fear being a bother.
I fear being too much work.
I fear being not good enough as a patient.

Next Friday I see the cardiologist again.  The last time I saw him, my incision was a tiny white line.  Now it is a red worm atop my skin.  And yet I fear telling him just how much it hurts because I have been so poor a patient with this pacemaker.  The pocket still hurts.  I still greatly struggle with the pacing.  And now the incision trouble.  I actually fear seeing him.  Being the problem.

So much fear.

My counselor has not understood why I want the hospital bill so badly.  But I do much better with the concrete.  I know that it was denied, although pre-authorized.  I do not know what will happen next.  Despite being totally overwhelmed by the cost of the sewage repair, it is a concrete number.  I paid half when the work was complete and I will pay the rest in five installments (somehow I have to figure out how to buy groceries and make those installment payments).  Because I asked for those not to start until the 28th of February, which is actually the first day of my next billing cycle, I have this billing cycle to finally learn (once the prescriptions are processed) how much my prescriptions will be.  I also have this month to swallow the doubled utility bills from the visit.  I have them all now. I know what I am facing.  I can plan.

I cannot plan the pacemaker.  And its insertion is not over.  I cannot plan counseling.  And that is certainly not over.  I cannot plan just how much I have changed from dysautonomia.  And that is, sadly, not over.

Both the doctor and her nurse (whose sister has dysautonomia) messaged me on Friday because of how upset I was over the continuing problems with getting the prescriptions transferred.  Both assured me that they are here to help me.  And both acknowledged that dysautonomia changes people in profound ways, changes thoughts and perspectives and capabilities.  I wept when I read that.  I grieve deeply the loss of who I was.  I stand outside myself and watch this person living my life almost in disbelief.  Who is she?  That loss is not over for me.  It is a daily loss, never ending.  I wept both in sorrow but also in relief.  Someone understands!

It has been a long two weeks for me, filled with things still not yet over.

Thursday, January 14, 2016

A new label...

I melted down again today.  SIGH.

I thought that by not having counseling this week, by not adding anything "new," I would have a break.  But I did not.

Before my appointment, I opened the mail.  Yes, I was that foolish.  In it was a denial of the hospital's claim.  The pre-authorized pacemaker implantation surgery I had was rejected in whole.  I called the insurance company as I was getting ready and learned, among other  things, that the hospital charges had included Tylenol!  Tylenol is not covered by Medicare.  You have got to be kidding me!  The Medicare company representative actually said that hospitals have to write off things all the time so this will just get written off.

Yes, right.  What are the chances of that??

I asked her how it was fair or even legal to deny paying for the surgery I had in an authorized facility by an authorized surgeon in an authorized room (treatment room as opposed to an operating theatre)? She just sort of laughed and repeated that hospitals have to pay the price when their claims are not right.

It's a game, I thought.  It's all just a bloody game.

How in the world can I expect to have doctors treat me if they are not going to get paid?  This is actually the second claim that was decided.  I learned last week that the surgeon's biopsy from October was not covered.  I've had it done two other times.  It is a covered procedure.  All the company would tell me is that the surgeon's office would just have to try and resubmit the claim.  Personally, I think that part of the going-out-of-business plan of theirs is deny, deny, deny.

Upon my return tonight, I checked my disability payment.  Despite all the effort I made to ensure that the $35 monthly premium to the now defunct Medicare advantage plan company was not deducted from my payment, it was.  No, I do not expect ever to get that money back.  I do want to stop this from happening next month.

I learned that disability payments have three systems involved:  The Social Security Administration, Medicare, and the payment center.  The information was clearly not sent to the payment center even though Medicare and SSA assured me last month that the records showed the change.  The rub?  There is no public phone number for the payment center.  I cannot contact it directly.  There is, in fact, no way for me to stop the automatic deduction.  My SSA caseworker is going to try and get the change made, but she said it could take months.  SIGH.

The toilet/sewer line has never recovered from all the stopped up toilets whilst I had visitors.  So, a sewer company is coming on Friday.  Expensive home repair.  SIGH.

The stove has bad circuits on two of the burners.  I finally tracked down the replacement parts and ordered them.  The electrician is coming to install them on the 20th.  Second expensive home repair.  SIGH.

I need a break.

At my doctor's appointment, which I thought was fairly okay (A1C is lower; cortisol is higher), I tried to be brave to talk about something I have struggled with acutely since the pacemaker surgery.  Something that fells me and shames me.  I spoke because I am supposed to try and do so, a recovery step of sorts.  According the the HIPPA law, anything related to mental health is to be recorded separately and in a private location that is not accessible without special permission.  But when I was handed my visit summary, right at the top was what I had spoken.

It was the first time I saw it in writing.
I melted down.
In fear.
In shame.
In despair.

Having the label of sexual abuse victim (it is IMPOSSIBLE to get that changed to survivor) has significantly reduced the quality of my medical care.  I have numerous instances of where I was charted as "a hysterical female due to a history of sexual abuse" rather than what actually was wrong.  Once, it was an asthma attack that led to pulmonary arrest.  I was resuscitated, but only after a long time of begging for my inhalers which were back in my room (I was en route from an MRI).  My chart did not have asthma, but it did have the hysterical female comment so I was presumed to be lying about the asthma and coughing for attention.  It was absurd.  It was life-threatening.  It was humiliating.

The new label on my chart is not one I can even write.  Is not something I can share, and I was horrified to see it right at the top of my page.

I was weeping and shaking and started struggling to catch my breath.  Given that I have no ability to run, I was also trapped.  The nurse checking me out was concerned and the doctor saw me when I tried to leave ... or rather was leaving and became alarmed.  I know that she was not acting maliciously, but she did break the law ... and she broke my heart.  Broke my hope that things might get better in that regard given how I was treated in the hospital.

I sobbed my way to the car, concerning a whole host of folk I kept asking to stop touching me and to just let me leave.  Only, I couldn't leave for a long while once I was in the car.  The severe cold (made worse by the growing snowstorm) was making my glasses fog up with the heat of my tears.  I couldn't see to drive even if I were capable.

I have been shaking and weeping off and on for hours now, my eyes so painful I want to gouge them out.  I am so very afraid.  And ashamed.

I want to learn about shame, but have never gotten very far.  Through my tears, I watched a talk by a leading researcher on shame and then read an interview.  In the latter, Brené Brown states:  Shame is the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.

Dr. Brown teaches that the three things that enable shame to survive are:  secrecy, silence, and judgment.  It's the latter that drives my ridiculous desire for time travel in which I would go back and never admit my past.  Even knowing how destructive that would be, I would remain silent.  For with the revelation of sexual abuse, there is judgment.  So too is judgment over the various and sundry ways folk cope with sexual abuse before they get help (if they ever get help).  As I have noted before, Bass and Davis (in The Courage to Heal) applaud any coping strategy that helps one survive and, without judgment, teach survivors to search and find healthy coping strategies to replace those that are, inherently, unhealthy, such as drugs, alcohol, and self-harm.

There is no way to escape judgement surrounding these things in our world.
For me, there seems no way to escape even my own judgment.

Dr. Brown, in her TED talks, discusses the difference between shame and guilt.  Shame is a focus on self; guilt is a focus on behavior.  Shame is: "I am bad."  Guilt is: "My behavior is bad."  Therefore, there can be positives in growth and change arising from guilt.  Destruction and even death is what stems from shame.

I felt such great fear.
I felt deep shame.
And I felt overwhelming revulsion ... at myself.

With labels that I cannot escape, how is my past (and my present) not my identity?  How do I ever find any worth in my life when I view myself with revulsion and shame?

I cannot take back the words I spoke today.  The words I have been speaking for a while now.  I first dared to tell the surgeon.  Her response was actually what I would dream of ... compassion and a lack of judgment.  She did not add the information to my record.  She did not label me.  She encouraged me to keep fighting it.  Knowing the integrative medicine doctor specializes in treating the whole body, looking at how everything is connected, I thought she should know because I have been ill coping with the challenges of the pacemaker.  I thought it would be ... still secret.  It is not.

Patient is a _________.

There is black and white.
Who I am.
What defines me.

Tonight, I have been thinking a lot about folk who are recovering addicts.  So often they say, "I am an addict."  Are they not, essentially, saying that is how they identify?  What frames them and their life? My counselor tells me that I am not defined by my past, but so very many people, those in authority and those who are medical professionals, do define me as so, filter their responses and treatment through the lens of that identity, even those in authority in the church.  They stop looking for anything wrong with me because this great flaw is already documented and, most of the time, is on full display before them in my unwillingness to be treated by male personnel and my reluctance to be unclothed.  If I were a muslim woman, those two stances of mine would be understood, would hold no judgment, and would not keep me from getting proper care.  They wouldn't be the line at which I stop being someone who is ill and instead be someone who is mentally ill.  Only, and here's the rub, a history of sexual abuse and the weaknesses that creates is actually not mental illness.  SIGH.

I did not think it even possible to be more heartbroken, but I am.
And I am ever so weary of weeping.

Monday, January 11, 2016

Old school...

I have been hoarding Amazon promotional credits for quite a while and saved up for a newish movie.  Normally, I wouldn't redeem so much on a single movie, but I have really wanted to see The Martian.  I liked it.  Actually, I have watched it three times, since I get distracted when I get agitated and some of the more dramatic moments were nerve-wracking for me.  Good thing I do not have good recall even of things that I have watched.

Dramatic moments.
Could someone please explain how this movie won a Golden Globe in the comedy category???

What I liked about the movie was that the science was realistic and that, to me, it had the feel of Apollo 13 without it being a true story.  Yes, I liked it.

Mostly, I have been sleeping and not blogging.  Sleeping.  Thinking.  Watching a new show.  Sleeping.  Napping.  And sleeping some more.

My average heart rate over the eight days I had the pacemaker turned down was only 54.  Even my cardiologist was surprised at how little my heart wants to beat on its own.  I was even more exhausted, as he suspected I would be.  But I also had trouble with the Reynaud's in my feet; I had blue feet all week.

I was very, very, very nervous about seeing the cardiologist again.  It is hard to really explain in a way that makes sense even to me, given how hard I know he is trying to help me.  I do not like needing the extra patience and extra help.  But the visit went better than I hoped.

He restored the settings that he turned off, although I find it odd that I have not really felt the accelerometer since he turned it back on, although I have most decidedly felt the testing.  SIGH.

I noticed something about the testing tonight:  Georgie is increasing my heart rate the first 30 seconds.  NO WONDER I LOATHE IT!  My heart rate increases from its usual 60 beats per minute to the mid 70s.  Tonight was the first night I thought to check my pulse and so the first few seconds I missed.  The high was 73, but I am not sure that was the highest high.  From the 31st second until the end, my heart rate dropped right back down to 60 BPM, however that whole time, Georgie is still doing something because it feels sort of like the accelerometer, but not quite.  So, I have something to talk about next time.  Also to ask if the accelerometer is at the same setting as before.

I studied about the accelerometer; I rehearsed thinking that it was doing good by raising my heart rate when I needed it more.  I wanted the ventricle lead back on because I am a researcher and I know the value of data.  And I wanted the nightly testing back on because it comforts me, knowing that Georgie is still working (knowing that I have not broken her).  The reason he did not reduce the settings on what he turned back on was because I gave him permission to make that decision.  His reasoning was that my heart function was good on those settings.

I am all for good heart function.

I found it interesting that he talked about just how poorly my heart was functioning before Georgie came to the rescue.  Even he was not completely aware because, as he puts it, I am not the best communicator about how I am doing.  Basically, I think I am being a bother.  However, I have tried to say that I felt crappy and I am honest (mostly) about how much I faint.

He does not, at all, understand why I am not a giddy as he is about how drastically improved my heart function is.  I have not found a way to communicate just how much I am struggling adjusting to the pacemaker.  I feel like I traded once set of challenges for another and that I am paying a price I didn't know I would have and one I was not prepared to pay.  Plus, in a nutshell, while I know he would not lie to me about the pain I feel from the pacemaker's position, I do not think that he is hearing me.  He is of the opinion that I am feeling normal pain form a pocket not fully healed.  I don't know how to communicate how much it hurts whenever I touch it, Amos touches it, anything touches it (the part that sticks out) and how much it hurts when it digs into my arm because I am lying on my side.  I am trying to hold onto his optimism based on his bazillion pacemaker implantations, but I honestly do not believe that he is hearing what I am saying.

Each day I am off the theophylline, the more I am most certain that I could never go back.  I am LOVING not having the blood pressure spikes and I am so very THANKFUL to be back on regular asthma medicine.  I have only coughed at night two or three times now.  I have had three episodes of coughing and wheezing, but I know the trigger was the cold.  Seriously, I am utterly grateful to the makers of Flovent, even if Medicare doesn't believe it is a vital medication (has it on a higher tier).

Not related other than thankfulness, I am just LOVING having the alarm system.  Frankly, I did not know just how much I was surpassing my uncomfortableness being alone in a house at night ... being a single woman alone in a house at night.  I even find comfort in the system talking to me all day.  I do wish it was a male voice, but one cannot be picky.  Perhaps I should call her Xena?

My cardiologist does believe that I do not need the interrogations as frequently because Hal can provide all the data they really need save for a single test that requires a challenge to my heart.  However, to give me more time to adjust to the pacemaker, he rescheduled my next interrogation from the end of January to the beginning of March.  He said two months, but it wasn't until after I was home did I remember to point out that two months would be the end of March, not the beginning, but they were scheduling two months from my appointment date.  I am trying not to quibble.  After all, I asked if I could have the same nurse/tech again.

He asked me to see him again in a month (you know, that time frame when the pain should be gone). I have absolutely no problem with that.  I would see him as much as he wants if it were not for the specialist co-pay.  I already owe the office $140, but they are letting me wait until the bill comes to give me a bit of a budget break since December was full of expenses.  The new Medicare plan does have a bit lower co-pay ($40 instead of $50).  If I overheard correctly, pacemaker checks do not have a co-pay, so I hope they are covered 100%.

Every day that passes without the hospital bill I fret more.  I keep thinking of things that I will be billed for ... drugs, care, room, supplies, vaccines, doctor, THE PACEMAKER, Hal.  Trust me, if you are worrying about a bill for a pacemaker implantation, DO NOT Google the price of a pacemaker.  It will just deepen your worry.

I want to know my debt.
I want to be able to plan.
I want my debt to be paid as soon as possible.

I cancelled my counseling appointment tomorrow.  There has just been too much new for me.  Too much to absorb on so very many levels.  I don't want to add anything new this week.  And I want more time to think about things ... so very many things.

I am wondering ... would some flashcards help me consider all this??????  I am thinking that I might sit at the table tomorrow with some index cards and markers ... maybe some paper for list making.  You know, try to work a little old school.

Manage, manage manage.  That's all I do these days.  Manage my body.  Manage my brain.  Manage (poorly) my bills.  Manage (poorly) taking and filling and tracking my medications.  Manage being a homeowner.  Manage my fears and loneliness.  SIGH.  I do new to get better at managing the new stuff.  Much better.

Monday, January 04, 2016

Finishing up the zucchini...

I had four, not three zucchini, so I ended up with four new recipes on my recipe rememberer blog.  Yesterday, I also cooked Zucchini Parmesan Loaf and Zucchini Applesauce Oatmeal Cookies.

The zucchini Parmesan loaf was so moist it tasted almost like it had already been swathed with butter.  Perhaps that was the olive oil in it?  The aroma as it was cooking was near torturous.  This would be, I think, an impressive bread to serve guests or bring to a pot luck.

These are BLOODY FANTASTIC!  They are noted as a breakfast cookie, and after eating one I realize why.  It is sort of like eating a hearty spoonful of oatmeal ... just in solid form.  When I was making them, I sort of doubted they would cook because the batter is so wet.  It is sort of foamy sticky in a way.  My oven often takes longer and it did with these.  But I had two for breakfast instead of my usual one-half of a granola bar and very much liked them.

I debated what to do with the fourth zucchini:  make a second batch of the cookies above or try the fourth recipe.  I finally decided to let reason and space make the decision: 1) I will surely have more zucchini to make cookies with again in the future and 2) my freezer space is quite limited and nearly all my containers are in use.  So, I tried the fourth new recipe.

These are Whole Wheat Zucchini Buttermilk Pancakes.  I ate one and froze the rest, wrapping them first in plastic, individually, and then in a freezer bag as the recipe directed.  They are massive and moist and a real bear to flip in the pan, as you can see.  But they are rather tasty to be sure.  Pancakes are one of my weakest skills, so I was pleased that these turned out well, if not aesthetically pleasing.

The cookies also used up some of the applesauce that was left and the pancakes used some of the buttermilk that was left.  I will be finishing up the wild leaf lettuce in the next day or so (I've had tons of salad) and the asparagus.  It makes me a bit sad that I didn't get to make that for my family.  My counselor is going to take on one of the cauliflowers and a bag of brussels sprouts as I do not believe I can consume both of each before they are bad and she is a vegetarian.  I also have broccoli to eat.  I gave Firewood Man's buddy, who helped him refill my wood rack, the tomatoes, jalapeño string cheese, and a bag of Haricot Verts.  So, other than the brie cheese, all leftovers should be consumed, shared, or in freezable form by Thursday.

Too bad I do not have copious amounts of Honey Baked Ham left over.

Today, aside from pancake making, I removed the lights from the Christmas tree.  I really wanted it up longer, but it is rather dry ... or at least I think it is.  The needles have become so sharp that brushing against them to plug and unplug the lights actually hurt.  I called Firewood Man and asked him if I could hire him to take the tree to a dump site.  I thought they had curbside pick-up in the city, but they do not.  I do not think I should be trying to stuff the tree back into my car and try to find one of the drop-off locations myself.  Besides, I went through the entire dozen GREEN eggs that he brought me on Saturday, when filling up my rack, for all this cooking of leftover vegetables.  So, he will be bringing me more eggs and taking away the Christmas tree some time in the next few days.

Once I use the last of the mascarpone (I am still undecided on what recipe to use), I will not have a reason to cook for eons.  The good news in that is having an utterly full larder.  The bad news in that is not having cooking as a coping mechanism available to me.  SIGH.

Tomorrow will be three more weeks until I can pick up and hold Amos.
A seemingly eternity.

Sunday, January 03, 2016

Words were like cages...

Continuing my quest to use up the remaining vegetables leftover from the visit, today I made the weirdest sounding, ever so tasty cookies:  Lemon Zucchini Cornmeal Cookies.

I thought about doubling the recipe, but I was not sure how it would taste and I did not have a plan for the lemons that would be left over after zesting.  I wish, very much so, that I had doubled the recipe.  It was bloody fantastic!!

These are my first no-egg cookies and I was quite worried how they would cook.  However, it is a Martha Stewart recipe and I am confident Martha would not steer a baker wrong.  The making of them is a bit weird, too ... nothing like I expected.

Grating the zucchini was a rather sodden affair.  Loosely piled afterwards, my zucchini made a very, very, very rounded cup.  I used it all and was not mistaken in doing so.  The one mistake I made was with the vanilla.  The original recipe called for 1/2 teaspoon and I assumed 1 teaspoon.  I am fine with the way the mistake turned out.  Tasty!

The first instruction is to beat the confectioners' sugar and butter.  I thought that it would cream.  It did not.  It was a very dry crumb mixture, with larger clumps of butter no matter how long I beat it.  Adding the flour and cornmeal made it more of a crumb mixture.  And when I added the zucchini, it looked more like a lumpy crumb mixture.  I started to panic and read and re-read the recipe to see what I had done wrong as I was continuing to beat the ingredients.  I thought about calling Emily, but I have avoided contact with folk because I am so distressed and wish to keep my upsettedness from bothering others' holidays.  Then, magically, the heavy crumb mixture began to transform to batter and then eventually to the thick dough that was described in the original recipe.  Boy, was I ever relieved!!

The cookies are rather tasty, with several flavors going on as you eat them.  The blue cornmeal adds a bit of a nutty flavor and the course salt explodes in contrast with the sweetness of the sugar.  There is lemon and vanilla.  There are crunchy edges and a soft inside.  Whilst the Brown Sugar Oatmeal Cookie is my most favorite cookie ever, this is a close second in a totally satisfying experience!

I have two zucchini left.  I plan to make a zucchini Parmesan loaf, perhaps even later today.  Right now, the dishwasher is running and I am resting on the couch with Amos, who is pouting over my not sharing the beaters.  [Yes, I have shared beaters with him in the past.]

I've mentioned before, I think, that my most favorite series is The Chronicles of Elantra by Michelle Sagara.  The latest one came out, so I am in the process of re-reading them from beginning to end.  They are one of the few books that I own both in hard cover and Kindle, though I have bought the last few in Kindle only.

I just love the main character Kaylin.  I love her struggles with shame and her past, her fear and her flawed character.  I like the way magic is presented and the mixed race society of Elantra, with humans, dragons, leotines, arians, Barrari (like elves,  I think), thalani, and the People (another humanoid).  And I like the role words play in the storyline.  [Kaylin reminds me a little of Bekka from Tamara Pierce's Bloodhound series.]

What I like about the books, despite having re-read them many times over now (forgetting and a poor memory makes re-reading like reading for the first time), is the way I discover new bits.  Last night was just one such time:

"Words were like cages.  She'd been trapped by words before—her own, both the ones she'd said in fury or fear and the ones she couldn't force out.  She'd been hemmed in by the words of others:  their orders, their rules, their commands.  They created a maze through which it was almost impossible to navigate on the bad days."

I actually did not really understand the last book in the series and so am looking forward to the new one furthering the plot line.  The one I am reading now, Cast in Peril, was the first book that felt like it was not a complete story ... it is continued in Cast in Sorrow and, to my mind, Cast in Flame, the one I did not quite understand.

Kaylin's body, when she was a pre-teen, was covered in ancient words that bad folk intended to use for evil.  She instinctively started using their power for good, to heal others, and set her on a journey that continues, now, in her early twenties.  She works as a Hawk, an enforcer of the law, and volunteers with the orphans and midwifes, healing them and keeping them safe.  She has had no real home since she was five and has quite a bit of baggage.  She is, in reality, the most powerful magician in Elantra, though she does not live or work as a magician.  Mostly, she finds herself in trouble as she is pressed into service during disastrous situations, fighting the Shadows (evil).

I really like that quote:

"Words were like cages.  She'd been trapped by words before—her own, both the ones she'd said in fury or fear and the ones she couldn't force out.  She'd been hemmed in by the words of others:  their orders, their rules, their commands.  They created a maze through which it was almost impossible to navigate on the bad days."

The exploration of words and language is one that twists and turns, rather than takes a straight journey throughout the series.  Sometimes, it is about forgiveness and sometimes it is about shame.  Sometimes it is about creation and sometimes about healing.  Often, when she is encountering challenges, her understanding, or lack thereof, of words comes up, as it did here.

Sometimes, she speaks the ancient language, as her role of Chosen, without understanding what she is saying or what is being created.  I like that she doesn't know what she is doing, but is willing, even in her fear, to attempt to help the person or the situation.

Like in a lot of fantasy books, some of the races have true names and knowing someone's true name means you can, if you are strong enough, control or even harm him.  But it is more than just true names or even true words.  Words are powerful and performative and creative in and of themselves, not relying on someone's belief or even understanding of them.  I am doing a really poor job of communicating here, but suffice it to say that I like the books primarily both because of Kaylin and her struggles and the role of words.

"Words were like cages.  She'd been trapped by words before—her own, both the ones she'd said in fury or fear and the ones she couldn't force out.  She'd been hemmed in by the words of others:  their orders, their rules, their commands.  They created a maze through which it was almost impossible to navigate on the bad days."

When I read that passage last night, I thought about the cages I have been in because of the words I have heard.  Cages inside other cages, so that one escape leaves you still trapped.  I have read this book four times before and had never noticed that passage. I think I noticed because of what I am going through just now and the words that have felled me of late.

I understand Kaylin, even though I am not an officer of the law or magician or someone continually battling evil.  Well, maybe I am the latter, after a fashion.  I understand her and thus feel an affinity for her, one laced with both sympathy and empathy.  I savor walking beside her in her journey and look forward to seeing how she slogs through her fears and shame.  I understand them.  I understand her confusion. And I understand the things she longs for even though she cannot have them.

"Words were like cages.  She'd been trapped by words before—her own, both the ones she'd said in fury or fear and the ones she couldn't force out.  She'd been hemmed in by the words of others:  their orders, their rules, their commands.  They created a maze through which it was almost impossible to navigate on the bad days."

She's always looking for the key to escape from those cages, from her past, her fear and shame.
I want to find it, too.

Saturday, January 02, 2016

A block of ice...

Instead of begging Firewood Man for more wood, I texted him a photo of my nearly empty rack.  Today, he surprised me by filling it to overflowing and bringing me another dozen GREEN eggs.  I needed them because my family ate through two dozen and I am wanting to do some cooking to try and use up all the perishable leftovers.

For one, I have been eating lots of salad and vegetables, as those are what is left over the most.  When Firewood Man brings wood, he brings a friend to help unload it and stack it onto my porch.  I sent his friend home with the tomatoes and string cheese that was left over, along with some Hostess cupcakes.  And I gave him one of the two bags of Haricot Verts because there is no way that I am eating both of them.  I've got asparagus, cauliflower, and brussels sprouts still to go.  I did not cook as many vegetables for my guests as I planned ... somehow.

I was a bit disappointed to see that mascarpone cheese does not last very long, or at least all the containers in the store had close best-by dates.  So, I am focused on using up the rest of that most lovely cheese.  I Googled and Googled and Googled, before settling on Sweet Potato Mascarpone Bourbon Bread.  For starters, I would really like someone to tell me why it is bread and not cake.

Doesn't that look like cake?  It sure does to me!  But what about how it tastes??

Probably the moistest bread (really it is cake) I have ever tasted!  Slightly sweet.  A hint of sweet potato.  Much like an interesting pound cake.  It was a good use of some of the mascarpone.

Amos is a good cooking companion, even though I wish he could actually cook with me.  For one, with Becky's resting pad, he now keeps me company in the kitchen.  For another, when I am sitting on the couch resting, waiting for the timer to go off, I do not have to worry about missing it because when it does go off, Amos leaps off the couch and races to the kitchen.  If I set the timer, I now do not have to worry about burning something because Amos has learned that the timer means I need to go to the kitchen.

I cooked because I want creative ways to use up the perishables left over from the Grand Visit of 2015.  I cooked, too, because I am very unsettled still and the fire and the candle and the tree just weren't enough to get me through this day.

One of the things that has come up in counseling is the counselor's working thought that the reason I feel so cold inside is not just my disassociating but my subconscious noticing that I do not feel ... a ... a bond ... where I think there should be one.  She talked with me ... gently and briefly ... how we learn bonding when we are young and what I experienced thwarted that learning.

When she was talking, it sounded like she was talking about the attachment issues that children in orphanages have.  I asked her if that was what she meant.  Her nod felled me.  I mean, I don't want to be the person who has attachment issues!

But what she said made sense to me.  She talked about how I clearly had empathy and compassion, which she found remarkable and promising, given what I have shared with her.  But the things I have talked about that lead me to feel as if I am an alien or a monster (I worry about being a psychopath deep down because of how much of a chunk of ice my heart is) are the very things that fit with struggling with making attachments, with bonding.

I mean, Becky and I have been friends for over twenty years now.  The hard part of the friendship, I think, is my inability to remember it.  So, we do not share the same history.  Trusting is difficult for me and the lack of a history of the relationship making trusting all the harder.  My lack of trust is surely hurtful, on some level to Becky, through she has been remarkable in her adapting to what I need in reassurance and reminders.  She has taken my lack of memory in stride and has honed her communications skills, I think, because of it.  But because of that, if nothing else, I cannot fathom why she would be my friend all this time.

For me, the moment I heard that I needed a pacemaker, I wanted Becky there.  My counselor said that speaks to a connection between us, even if tenuous.  However, for me, the scary part is that I know I care about Becky and I wish good things for her, but I do not love her.  I do not think that I love anyone.  Gosh, sometimes I am most certain that I do not even love Amos, though how I feel about his is world's different than Kashi (which oft makes me feel guilty).

It is the same with Mary.  Often I long to speak with her with my whole being.  She is funny and smart and has such an interesting and intriguing mind.  However, I worry that the main reason I long to talk with her is just all about me ... not about her.  I LOVE the way she says my name.  It warms the cockles of my heart and fills me with ... with something I cannot put to name.  I love how she can translate myself to me.  I love how she can speak the sweet, sweet Gospel to me.  But do I love her?  I do not think so.

I care about her and her family.  I worry often about her husband and the demands on his time.  I care about her children and worried fiercely about her youngest's struggle to thrive after being born.  It was such an immense relief to learn she finally packed on some significant weight.  I care about her career as a writer and speaker.  I wish her success and peace in her homeschooling.  Good things and much health ... but, to me, in my heart there is just ice still.

When her daughter was just not well, all I could think was that if she died, I would be unable to help Mary in any way, to comfort or console her, to be any sort of good friend to her.  Ought not my concern be more about her baby living rather than worry about how I might hurt Mary if her baby died and my block of ice heart had no comfort for her?

This just ... I am not making sense, not even to me.  It is hard to explain.  But it is like living as if you are always on the outside, looking through a pane of glass at the folk on the inside.  Separated and disconnected, puzzled as to how to be sitting with them on the inside.

I like that, often, when I try to explain the secret fears of my heart, the counselor understands.  I like how gentle she is being about explaining.  However, much of the time, I do not like what I am learning about myself.  It seems so unattractive and inhuman, even.  I feel more the outlier and even more unworthy.  I just want to be normal ... or par for the course.  But I am not that.

The education I received as a child makes me anything but par for the course.  Well, I am that when in the company of millions who have been sexually abused, but not for rest of the world.  And since sexual abuse is most often hidden and kept silence, that rest of the world seems like the entire world but me.

How do I make connections if I struggle to trust?
How do I make connections if I do not love?
How do I be a friend if I do not make connections?

I pretend, all the blooming time, to be better than I am.  I fear, to be honest, that I pretend, all the blooming time, to be a friend when I am not.

This is a photo of the wood from the tree that fell during the ice storm.

In addition to the piles in the front yard and here on the side of the property, there are piles across the street in both directions because the tree completely blocked both streets.  This is the wood after a full day of using the chipper to toss in what took more than two days to cut up.  I am not sure if the chipper is coming back, but folk have been loading up their vehicles with the wood from time to time, so maybe the city is waiting to see just how much might "walk off" before finishing the job.

Anyway, the day of the storm, when the tree came down, the crew worked to cut it until the wee hours of the morning.  We were having spells of torrential rain and it was near freezing outside (ice had felled the tree).  I worried about the men.  I posted on Facebook asking folk to pray for them.  I told my counselor about the tree and those poor men and she used that as an example of my at least having compassion.  Not many, she said, would have given them a second thought.

I care about my UPS driver.  I offer him drinks in the heat and thank him for his service all the time.  I love that he laughs at Amos and calls him "Cujo" because of his barking.  I ask him how his family is and could tell you a lot about his life (such as he was born and raised in Alabama and oft misses the South the way I do).

So, maybe I am not the psychopath.  Or a monster.  I cannot really be an alien.  But I am not ... human ... either.  At least that is what I believe to be true about myself.  So, what am I?  Not being an orphan, with an easy to talk about excuse for struggling with making connections, I am lost as to how to speak of the lack within me that I know should be there, but isn't.

Yet another reason why I long to be a hermit for real.

Anyway, I have been thinking muchly about her initial words on attachments, bonds, making connections, and what I did not learn when I was young, as opposed to what I did.  I think, in a way, what the nurse said was harder for me to bear because of the conversation about bonding.  Perhaps wrongly, but I feel the failure for not trusting, not loving, not ... bonding.  Hearing the failure of wrong thoughts, too, was too much in 24 hours.

It is helpful, to be sure, to learn things about myself.  After all, that is the reason I love The Courage to Heal and think every adult in the entire world needs to read that book so that they, too, can understand and help encourage and support the millions and millions struggling with sexual abuse.  It explains so much about the whys and wherefores of the patterns in your life, which helps in the effort to change those patterns.  But learning these things about yourself that highlight just how not normal you are is rough and discouraging.

On a completely different note, today was the most painful day since the second day after my pacemaker surgery.  I am not sure why, but every movement that involved the upper half of my body in some fashion hurt.  I mentioned that to someone with whom I was chatting and she said that I was going negative and to return to the light.  That hurt because I was stating a fact, not being negative.  My day was filled with pain.  When you battle pain all day, it helps not to be alone with it, to know someone else is aware and at least pulling for you to get better.  I was too chicken, however, to speak how I felt about the admonishment.  I write about it here because I think it is a good example of conversing with the chronically ill and the need to understand that speaking of their physical struggles is not—and should not be viewed as—negative.

I will also know that Sears is shameful in its ablism.  I drove there on the errant advice of the Land's End representative who told me, wrongly, that I could return my shoes there instead of mailing them to Land's End at my expense.  The order was more than two years old and, thus, cannot be addressed in the store.  Anyway, when I got to Sears, I was astounded to discover that the double-door entrance had not a handicapped door assist on either of the two doors I had to walk through in order to enter the store.  Despite struggling with opening the heavy doors, no one helped.  Sears assumes all their shoppers will either be able to manage the doors or will be with someone who will help the disabled.

Panera is the same way.
Shame on them!

Friday, January 01, 2016


My cardiologist asked for the number of my counselor.  SIGH.  I gave it to him.  SIGH.  I mean, he is the most expert medical personnel whom I have met in Fort Wayne when it comes to dysautonomia.  And, well, he does want to help me.

My counselor told me last night the main question he asked:  How can I help Myrtle feel safer when she comes in to see me?  Sweet, yes?  But oh, how I want to not be the person who prompts such a question.  SIGH.

I am still greatly off-kilter, despairing, hopeless, and feeling all is rather pointless when I think about the encounter with his nurse.  Words oft fell me and the ones she chose in particular—not, I believe, from any sort of unkind or malicious place—were just brutal because they highlight my greatest fear: that I will always be so ... fragile.  I will always be the person who cowers in the face of ire and whose fear and shame hold her captive.  As it is, I am already very much not wanting to go back there on the 7th.

Three days in a row now, I have had day-long fires.
I need more wood.
Just a week after getting a full rack delivered.

I am also in dire need of an ash bucket, if I am going to continue with my emergency fire therapy.  Yet another thing I have made do without.  However, the coals last about 18 hours in my fireplace, so if I wish to have day long fires, day after day, I need a metal bucket in which to put the hot ash that is now spilling out of my fireplace.  Yes, I have melted more plastic grocery bags than I care to admit.


What does that mean to me?
Sometimes, I am not even sure.
Sometimes, I am most certain.

I had the safety of my home rocked violently whilst my family was visiting, even though I know none of them knew or understood.  None of them knew I spent time in my closet.  None of them knew how hard I battled to hide my fear.  For one, my nephews wanted hugs and kisses, frequently.  They all wanted hugs and, especially since the hospital, I am in dire need of not being touched.  I gritted my teeth and endured it.  I tried to point out that it was painful to hug me, since the surgery, but that didn't stop the personal contact.  The other was that my nephew walked into the kitchen naked.  I just cannot handle the sight of male anatomy.  The sight and all that I felt in that moment still troubles me deeply when I become quiet, when I am not keeping so busy as to block as much out of my mind as possible.

Safe, to me, is no touching.
Safe, to me, is no nakedness.
Safe, to me, is no embarrassing stories.
Safe, to me, is the freedom to lie on the floor or crawl into the closet ... to be who I am right now.

Maybe who I'll always be.

Neurological anxiety stinks.
So, too, does what trauma does to the body and the mind.
And PTSD, of course.

I have written before about trauma and the mind.  And I have written about how dysautnomia wreaks havoc on the autonomic processes in my body, including vastly exaggerated responses to the slightest bit of stress.  Again and again and again, adrenaline, cortisol, and norepinephrine are being dumped into my system.  The physiological response is not something I can control.  Startle me, even the tiniest bit and the hot flash of adrenaline washes over me from head to toe, my heart starts racing, my limbs tremble, my body gets ready to fight, but I instinctively want to flee.

My counselor told me that what I am feeling right now, the thoughts about all this hard work being pointless, stems from the constant stress response I have been in since before the surgery.  The stress response in my body engenders negative, not positive reactions in my mind.  Between the surgery, the adjustment (or lack thereof) of living with a pacemaker, getting my house ready for a visit, losing my Medicare insurance, not having a COLA and having my medications, co-pays, premiums, house insurance, and care insurance all increase, and the triggers that are bringing up both nightmares and memories I would rather not have right now are pummeling my body and my mind ... all that is understandably too much for me to hold onto the small hope that had been building whilst talking with her this fall.  Besides ...  I'm not even to the worst part yet, though clearly that journey has started.

Hence the charge do nothing else but try to practice grounding when the onslaught becomes too much.

I personally think that my greatest problem has been spending five weeks denying Amos' begging for me to pick him up.  Ever since the pit bull attack, when he was seven months old, my Fluffernutter has preferred to be held or to be perched atop my shoulders.  Often, after picking him up, I slow dance and whisper sweet nothings to him as he relaxes against my body, rests his head on my shoulders with at least one paw around my neck, and falls asleep.  I ache to hold him once more.  Waiting another month seems like and feels like an eternity to me.

Amos is safe to me.
I want to hold him more than words can express.
Even if he did "water" the Christmas tree skirt.
Three times.