Thursday, March 31, 2016

Please don't remind me...

Tuesday, the counselor I have been seeing if I had any more security issues.  I had no clue what she talking about.  She rephrased the question a few times before I finally understood she was referring to March 17th, when I discovered whilst setting the alarm that the basement door was open.

I was rather afraid.  Instantly.  And I was worried someone was lying in wait for me to go to bed, perhaps having slipped in whilst I was showering or outside with Amos.  The police came to check for monsters in my closet and I spent the night sitting up in bed holding my gun.  Yes, I was rather afraid that night and the next couple of days.

But that was a lifetime ago.
How am I supposed to remember something two weeks before??

I do not do well with vague questions.  I need direct talk:  "Myrtle, are you still battling fear from finding your basement door open?"  That I would understand.  "Security issues" makes no sense to me.

But, I think, I am not really interested in having anyone bring up something distressing when I have forgotten it as if it had not happened.  For me, it really is as if it never happened.

Yes, I still would like to know how the door came to be open.  By that I mean how it came to be unlocked.  Surely one of the ferocious wind storms that we have here in Indiana blew the door open.  But when I went to investigate the basement living space (armed with my pepper spray gun that shoots up to 25 feet) I found the dead bolt undone and the key still in the lock. Why?

I know.  I KNOW that I did not leave the key in the lock.  I would never do that there.   I do leave the key in the back door, but whenever I have opened the basement door, I hang the emergency key for quick exit during a fire around my neck.  I always put it back in place when I am done.  Was it the maids?  If them, why?  Was it my brother when he was here?  If so, how did I miss that when checking the room after he left?  Was it the electricians who worked in there at the end of January?  If so, why would they have needed to open the door?

Understanding is really helpful to me.  The book on shame research and the one on healing from sexual abuse are so important to me because they explain me, my thoughts and responses.  They teach me.  Knowing why the door was unlocked and the emergency key hanging in the door would have gone a long way to assuaging my fear that night.

But now?  Well, it didn't happen ... to me ... until I was reminded.
Please don't remind me of such things.
A broken rememberer has got to have its benefits.

Still, the good side is that I am no longer inside that moment of fear.  I can think about that night and know that it was okay for me to be scared and okay for me to call the police and okay for me to still worry after they left.  It was okay because I didn't become stuck in that fear.  I checked closets and the attic for a few days and then I focused on the fact that I have an alarm system now to help keep me safe.  And, that night, it did by telling me the basement door was open.  Without the new system, I would not have known ... maybe for months.

Because I faced my fear and worked through it, I forgot about it.  And I am just fine with that.

Wednesday, March 30, 2016

Next time...

Today's GP appointment when better than I could have possibly hoped.

For one, I was frank, at the beginning, about being upset over seeing yet another specialist.  I tried to explain but I cannot really, beyond: a) it being one more thing and b) I am weary of having folk examine me and take my vitals.  That's not really it, but I just don't have the words.  She very promptly said that if I am not ready then to put it off for a few months. She said what is wrong with me was wrong before I saw her and will still be wrong then.  It was such a relief to hear those words that I actually think I might keep the appointment.

Who knows.

For another, she is the most efficient doctor I have ever met.  The appointment truly was just 20 minutes, but it was a jam-packed twenty minutes.

Third, when we got to the pacemaker incision, which is really discouraging me, she took the time to consider the pros and cons of removing the scar and starting over to address the hypertrophic scarring verses sticking it out with it healing as it, if I am not opposed to the cosmetics of it.  However, what weighs on me rather heavily is the constant pain.

The incision hurts.  The pocket hurts.  The skin hurts.  And what doesn't hurt itches.  Fiercely.  With such pain on the skin of the incision, scratching is a non-starter.  I think, perhaps, I could handle the itching, but when it is not just sharp pain, it also feels like a bee sting. Over and over and over again.  Sometimes it wakes me.  Just wretched.

The GP said that with nerve pain, sometimes the nerves get all agitated and they won't stop hurting until someone comes in and shouts at them to calm down.  Welcome to the show: gabapentin.  It is a nerve pain medication.

The GP wonders if maybe the pocket is actually healed but that it hurts because so much of that area hurts and is inflamed.  That is why she wants to try the medication.

I told her that I had noticed now that the muscles in my arms and legs hurt if you touch them.  Were someone to grab my arm, I would not be all that kind about it.  My legs hurt after standing too long, something I have dealt with for years.  And she asked about my legs.  Then ... then she blew me away.

"Does your hair hurt?"

I was so surprised that she asked me that question. I have never mentioned that to doctors because, to me, it sounds like crazy talk.  That my hair hurts is one of two reasons that I lopped off my long locks.  I miss those lengths greatly and am working on getting them back.  The migraines were the other reason.  But maybe it wasn't the migraines so much as it was additional pain when my head was already hurting.

While it is a total and absolutely long shot, and if asked, she would deny ever mentioning this to me, but there is the slightest possibility that the gabapentin might help with the flushing, too.  That is to say, I might have relief from my clown face!

The main side effects are drowsiness and dizziness, so we are starting with a low dose and I am to take it at night, just before bed.

She asked me, not once but twice if I was sure no one ever tried to address my nerve pain before.  Nope. I would definitely remember that.  Or at least Becky would, for sure.  She made a face at me, the second time I answered that very clearly said, "Well, they should have!"

When I was at the integrative medicine specialist this past week, I reluctantly noted, since we were talking about the swallowing, that for several years now I cannot bear to have anything touching my neck.  Turtlenecks are a complete no-go for me now.  And, sadly, I gave up wearing my cross, someone I had done for nearly forty years.  I started to say it was probably just phantom dysautonomia stuff when the doctor interrupted me to say that many of her patients, especially those with Hashimoto's complain of that all the time.

It was not crazy talk!

I did, despite the whole of the visit, leave with this sense of abject relief.  I thought that was the best doctor moment yet, but the question about my hair today takes the prize.

I have been ever so mightily blessed with good medical care of late.  Four doctors and not one of them calls me or thinks me crazy.  It is almost more than I know how to handle!

I like how, although I was really nervous at the beginning of the appointment, I tried to speak how I felt and was rewarded!  I should get brownie points for that, eh?

Thinking about how much pain in my arms and legs I have now, I made the executive decision to cease riding the recumbent bike daily and aim for every other day.  This way I will have more time to recover.  I think that I might skip around on my list for my appointments and talk about exercise intolerance next time.

Next time.
What a beautiful thought.

Tuesday, March 29, 2016


Someone gifted me, I think, a subscription to Fine Cooking magazine.  I just received the second copy, only I never received a notice of who gave me the subscription.  I find it interesting and have enjoyed reading through it.  I would certainly send a thank you note if I knew where it was to go!

Saying "thank you" is not another one of my strong suits, I think.  For example, my friend Mary said the nicest of things to me on the phone a while ago.  She said that if I would ever like to write about something we were discussing, she would have me as guest author on her blog. I was floored.  Humbled.  And overwhelmed.  It wasn't until later that I was even able to mumble thanks (via email) because even the thought of the gift was still overwhelming.

Another example is when the counselor I was seeing gave me this small silver turtle, with a GREEN back, and the word "believe" on it.  I think I mumbled thanks, but I could not really express how I felt.  I mean, I had long admired a similar turtle on her bookshelf, a purple one with different words on its back, and so I was tickled to have my own turtle.  More so was I overwhelmed at the choice of the color GREEN and the word.

For me, "believe" is such a tricky word these days.  I struggle with what that means spiritually.  What does He mean when Jesus tells us to believe?  The other day, I saw someone quoting a passage about how unless we are this or that we will never enter the Kingdom of God.  The person quoting it was doing so as the reason for why we must do those things, when I know that Jesus was saying that if we chose to live by the law, we must be perfect to that law to enter the Kingdom of God, which we cannot be.  Maybe a better way to say it is that the only way to enter the Kingdom of God is through perfect obedience to the Law and there is only one way for humans to be credited that ... through the life, death, and resurrection of Jesus Christ.

I believe those things.  Only when it comes to me, I think ... how could I be saved?  I have such deep, deep shame and such guilt and such doubts.  SIGH.  What does it mean for me, personally, to believe?

But also the word "believe" is important to me because even if I do not believe certain things about myself, I want folk around me to do so for me, until I can do so.  I have borrowed such belief from Becky and from Mary at times.  Maybe that is not such a thing a person should do, but I find comfort in their confidence and their hope.


I have been rocking the miserly utility use as a way to save significant money.  Two months in a row now I have had substantial savings.  Though not quite as good at last month, this month I am $84.97 under budget on natural gas and electricity.  The water bill came today and I was spot on, but had no savings.  So, last night, I treated myself to great warmth when a dysautonomia chill started.  I think Amos was freaked out by the fact that the temperature in the house rose 22 degrees, but he has been my content-in-all-temperatures puppy dog.

Sometimes I wish I could borrow his contentedness.
At least I get to borrow his comfort!

Sunday, March 27, 2016

Born and bred...

I discovered this lovely series on Netflix called "Fixer Upper."  Clearly, with the work I have done on my two homes, it is a Myrtle type show.  But I have enjoyed how positive and friendly the couple working together are, as well as all of their contractors.  It is a show full of love and laughter and helping folk have their dream homes.

The funny thing about the show is that it is set in Waco, Texas.  I lived there for five years, four in college and one after I returned home from the mission field.  I used to bike out in West, Texas and thus am intimately familiar with the locale of the show.

Only I'm not.

There is not a single iota of locale that I remember.  Nothing that I have seen in the first season is familiar.  That staggers me.

I thought that I might remember something. I thought I might remember because the first season is 13 episodes of delight.  I adore old homes and was born and bred by parents who see diamonds in the rough where others see disaster.  I revel in renovations, savoring the transformations and the choices made to get to the end.  And, being an interior designer's daughter, I find it fascinating to see a designer who is the polar opposite of my mother but has the same vision for translating client desires that my mother does.  Altogether it has been as lovely as watching The Great British Baking Show.

In such loveliness and interest and safety, I truly thought that I might recapture something of my life there.  But I have not.  Nothing.  Nada.  Zilch.

That saddens me.

Of all the places that I have lived my entire life, that was arguably the place where I most felt like I belonged, where I actually was a part of the human race.  It is the place where I had the privilege of serving as a hospice volunteer tending the dying and comforting their families.  It is the place where I started, in the most minuscule of ways, to chose a life that was not bound fully and completely by shut up/be still/wait until it is over.  I think, were I rating such, it would be the happiest place of my life (at least the first four years).

And still no memories.

The second season will be available April 1st.  I plan on watching it, still hopeful for something to spark a memory, something to trigger a glimpse of my life.  But I am at least thankful to say that although I am deeply disturbed over the blankness in my mind over my life in that city, I am also not so distraught that I cannot function, as I might have been before I started counseling.

I am not sure how to say it, because the blankness is not something that we've really addressed (talked about, yes ... resolved, no).  I do not have the best words for how disturbing the blankness is.  And, given my words in that very small office each week, I think this is surprising to write:  I am disturbed but I am not so hard on myself about it.  I have gentler, more forgiving (or would it be accepting) thoughts.

I mean, if I can have a such a lovely journey as I have had during the first season, savoring every moment of the show, and not remembered a thing, despite trying my darnedest to pluck a single moment of my past out of my beleaguered brain, then there is no blame to be had.  It just isn't going to be at this time ... and maybe never.  SIGH.

Honestly, finding the show felt like a gift.
A kindness.
A mercy.

You cannot understand life in Texas unless you live there.  You absolutely cannot understand life in Dallas unless it is/was your home.  And I would argue the same for life in Waco.  It is too hot there, for me.  Frankly, even to visit, I think.  I would be wretchedly miserable atop my already wretchedly difficult life.  But, oh my!  How do I ever miss Texas!!

Saturday, March 26, 2016

Treating fear...

As humans, it is difficult not to associate crushing chest pain with death, especially if you are nauseous and sweating.  And the leading cause of death for women—more than all cancers combined—is heart disease.

Part of the reason for this is that women's symptoms of a heart attack are often different from men.  We can experience nausea, backache, jaw pain, sweating, stomach pain, and shortness of breath.  Those are often symptoms experienced by those with dysautonomia.  So, it is understandable when you have chest pain, that you think and fear heart attack.

In the support groups on Facebook, it is rather common to see posts about folk who have chest pain, go to the ER and are sent home.  The chest pain we experience is neurological, not cardiac disease.  And there is little to be done with it.  But fear, especially the fear of death, drives one to seek help.  Often, as I have seen posted, again and again and again.

It occurred to me that really what they are seeking treatment for is the fear more than the pain.  I mean, after all, dysautonomia and its frequently co-morbid conditions means you live a life of pain in your chronic illness.

A couple of months ago, I was stricken with terrible searing pain in my right shoulder, radiating down my arm.  It lasted about 4-5 days (I don't remember exactly).  It was crippling pain and a very large part of me wanted to race to the hospital and demand that someone do something.  Only the very logical part of me knew that it was nerve pain and would, eventually go away.  And I know that painkillers slow my already sluggish innards.  The pain eventually left, but I fought that urge to seek help many times during that flare.

I have never sought out the ER when I have chest pain.  I did call an ambulance once when I had tachycardia, but not when it is just the crushing, overwhelming pain.  Even though I cognitively know what's happening, it is difficult to not give into the fear of imminent demise.  It is difficult to separate myself from those thoughts and emotions and remain patient.

I know that ERs about about life-saving medicine, but I actually believe that helping someone through their fear, their sense of hopelessness and isolation, especially when borne from physical malady, is important.  Given the millions who face life with chronic illness, why shouldn't hospitals have staff in ERs trained and dedicated to supporting those folk who are facing a crisis of spirit, who are desperately in need of care and support to endure one more

With dysautonomia, practically anyone who comes into an ER could use the physical support of an IV bag of saline (we often suffer from low blood volume and low sodium and dehydration).  And during that infusion, the calm and compassionate voice of a caregiver who will listen to your fears and the ails of your body and acknowledge your battle could go a long way toward helping the patient gird her loins and remain in the battle another day.

I frankly find the selfies in the support groups disturbing.  The ones of IVs seem a bit ridiculous, since surely a millions of folk have had IVs.  And the selfies of blood pressure screens seem equally ridiculous.  We all have crappy numbers.  Why not just write the numbers?  Why not use words instead of silly photos.

But maybe it is that we, as a society, do not encourage the speaking of vulnerability or the acknowledgement of fear.  We are to "buck up" and "move on."  We are all out of the practice of using words to speak our fear.

It's funny.  Even strangers will take the time to comfort a fearful child.  Folk will go out of their way to assuage a child's fears and help her calm down.  Time is no factor.  The measure of success is the cessation of tears and the child's willingness to take up the mantle of life again.  Why is it important, even honorable and celebrated, to comfort the fear of a child but not an adult?

I lay in bed last night, struggling to breathe from the crushing pain in my chest.  I wanted monitors slapped on my body.  I wanted relief.  I wanted someone to be with me so that I would not die.  But I did not call 911 or race myself over to Parkview.  I might have, though, if we lived in a world where adults could be comforted in their fear, their whole being treated for the ravages of life with chronic illness.  Sadly, we do not. 

Friday, March 25, 2016


Back in the dark ages, when I was in graduate school, my M.O. for writing research papers was to read the source material immediately.  I mean, I had it highlighted and notated before most students even thought about looking for source material.  Then, I would spend almost the entire time allotted for the paper telling anyone and everyone about what I was learning.  That way, when it came time to actually writing the paper, I could knock it out in a few hours, having rehearsed the knowledge for weeks and weeks and weeks.

Even though I have not yet moved to the fifth chapter in the book on shame research (I want help talking though the introduction and first four chapters first), I have been rehearsing the information with others in much the same way I did back when I was a student.  Today, I had the chance to do so again.

Someone called me to rehearse an apology.  Frankly, I stink at apologies.  Primarily because, I think, that when I am in need of apologizing, I am drowning in shame, which means I am drowning in fear of being found flawed and unworthy of acceptance and belonging.  I am not thinking cognitively (a bit insensible) and cannot see past the overwhelming emotions.  I would very much like, one day, to separate shame and apology, but I don't know how to do that at the moment.

However, listening to the caller, I thought about what I have learned about empathy and about what the other person would like to hear.  I know that this isn't about shame, but a key point of education is the notion of transference.  The apology I heard was more about the caller, not the one hurting.  So, I made some "edits," which shifted the words toward acknowledging the hurt and expressing a desire for the person not to be hurt.

I know the caller called for help and I actually helped, but really I feel like I was the one who was helped.  It was instructive for me to stand outside of an apology and think about the reason for the words, the meaning of the words, and the receiving of the words.  I think, too, even though I struggle with feeling rather cold and dead inside, it was encouraging to realize that I could at least think empathetically.

I wish I were better at talking about shame, but I have tried.  At my appointment this week, I tried to discuss my shame reaction at my last appointment and brought the book with me for a prop.  However, the discussion was not really a discussion.  In large part, the focus was how my doctor did not mean for me to experience what happened.  That she was cutting and pasting from her notes to create my visit summary and did not check her editing job carefully enough.  I know what happened was not intentional, but it does not change how I felt and my fear about the label she added to my public medical records.  I was disappointed because my doctor was ... distant ... about the matter when she has been extraordinarily personal since the first visit.

In reflection, I wonder if she responded the way she did because she felt shame about what happened.  If she hardened herself to hide her own feelings.  I don't know. I just know that the exchange was devoid of empathy that I could feel and was primarily asking me to understand how the "mistake" happened.  Like the apology that I first heard today, it was more about her than me.

Even though, at the time, I had those thoughts, I could not think about how to voice them.  And, more importantly, I didn't feel as if I had the right to voice them.  I mean, what did it matter how I felt?

I am hoping to learn how to speak shame, as I continue to learn about shame.

Along the same line is that I have not been posting quotes from the book on Facebook.  I got sort of ... timid ... about sharing what I think is important.  Not even here.  And I have not posted, myself, much about the issues important to me, chiefly sexual abuse.

I have noticed, since I started posting about invisible illness, one of my Facebook friends started posting about another illness.  And, I think, posting more about sexual abuse.  I guess I am saying that my oft timid postings might have inspired some vulnerable posting elsewhere.

Today, I read this article by a rape survivor on the issue of transgendered folk and bathrooms.

"For me, healing looks like staring at the little girl in a Polaroid photo and validating her need to be seen, heard, and protected instead of hating it. It looks like telling my story, even the parts I can never make pretty, in hopes it will help break the anonymity of survivors and create a sense of responsibility in others to act."

Lost in the argument of open bathrooms is the trauma that millions of Americans have experienced.  Millions who have reported and more ... many, many more ... who have remained silent.

Don’t they know that one out of every four little girls will be sexually abused during childhood, and that’s without giving predators free access to them while they shower? Don’t they know that, for women who have experienced sexual trauma, finding the courage to use a locker room at all is a freaking badge of honor? That many of these women view life through a kaleidoscope of shame and suffer from post-traumatic stress disorder, depression, dissociation, poor body image, eating disorders, drug and alcohol abuse, difficulty with intimacy, and worse?

Why would people knowingly invite further exploitation by creating policies with no safeguards in place to protect them from injury? With zero screening options to ensure that biological males who enter locker rooms actually identify as female, how could a woman be sure the person staring at her wasn’t exploiting her? Why is it okay to make her wonder?

That last question gutted me.
Whole worlds exists in that question.
My life exists there.

It is a good article, very much worth the read.

What interests me is that I have started trying to remember to make public the posts I do about sexual abuse.  Today, I discovered that someone I don't know from Adam shared the article!  I don't know how she came across it, if it was from one of the two likes (yes, it still hurts me that I don't get lots of "likes" for things that are deeply personal and important to me) of if she just perused my profile somehow.  Maybe someone from one of the two dysautonomia groups I am in??  I just don't know.  What I do know is she share it with her own appeal to consider safety.  

Yes, it warmed the cockles of my heart to see someone share the information, spread the conversation about sexual abuse survivors and the impact of public policy on their lives.

As with NCS, dysautonomia, or chronic illness in general, I am not wanting to be the advocate, to be the educator.  That is just more pressure on me.  But I do long to speak freely about the things that society seems to prefer to be kept hidden.  I want to speak freely and have others take up the discourse.  I want speak and be heard. I want to speak and receive back empathy.  I want to speak and have those things considered whilst engaging with me.

The other reason that I found the article valuable was the following glimpse into the mind of a survivor:

The invitation to engage as a child had revealed my whole dilemma: I didn’t hate the little girl in the photo. I hated her need. I hated her anonymity. I hated the visible proof that she loved her abuser. I hated that she didn’t know any better, that it took her another ten years to figure out why she still slept with the light on and showered in her underwear and vigilantly lined the crack under the bathroom door with a beach towel and destroyed her teeth with gum she relentlessly chewed as a means of escaping the recollection of his breath on her face. I hated that he fooled her. He fooled everybody. He was really good.

“Wake up!” I wanted to scream at her. “Can’t you see what’s going on? Do something about it!”

I want to share it with my counselor and see if, maybe, we can find a way to talk about the photos of another little girl....

Thursday, March 24, 2016

Discarding myself...

Myrtle, how in the world did you move the mattress?
Inch by inch.  It was actually the best fainting I've had in a while, for I had such a soft landing!

I am so incredibly sore from making my solarium a solarium instead of just a spare bedroom with oodles of windows.  However, today I worked on distributing the plants a bit so that I was able to downsize to just one plant rack.  I also pruned all the dead bits off my rosemary bush.  It just needs to hang on a little while more before putting it back into the ground.  I am wondering if Firewood Man could help me make a plastic frame for it next winter so that I could leave it outdoors.

I had a mahogany plant stand by the front door, which has been empty for years because the foyer is just too dim to keep a plant alive.  I finally thought to move it to the solarium.  When I put my string of pearls back outside, I would love to have a fern perched atop this!  I've wanted a house fern my entire adult existence, but I keep killing them.  I am hopeful one might survive in the sun-shiny solarium.

In case you are wondering, this is what I mean by a floral rug.  Something bold in its floweriness, but perhaps a little less contemporary in the actual flowers.  I am not sure about a brown background.  Thankfully, I don't have to decide because this rug is about twice as much as I think I might could purchase if I get some birthday money.  Still, it sure would look good in my solarium, eh?

This is what I call my "office" bookshelf in the basement ... a photo taken a couple of years ago (note the lack of flooring).  This was after having already reduced the bookshelf from three separate bookshelves to just one.  Prior to this bout of organization, I had piles going up almost to the ceiling on the top shelf. Still, you can also see stuff on the floor beneath the shelves and one pile on the top shelf.  I forgot to take a before photo today, but I finally tackled my office bookshelf one more time.

I wept.
I felt like I was discarding myself.
Amos fretted beside me.

[Shaking hands equals fuzzy photo.]

I have wanted to downsize all of my professional stuff, since I no longer am using it.  On the bottom shelf, you can see that I could not bear to part with the bulk of the books I used during my graduate work in literacy and my dissertation research.  I did cull it by 15 more books, but I just cannot bear to toss in the recycle bin my collection of seminal research on literacy.  I wish I could find someone interested in studying it.  Were you to get a Ph.D. in literacy studies today, you would still need to read all of those books.

The binders was the most painful culling.  Actually, this photo represents parts of five days of attempting to downsize my professional stuff.  I finally managed to let go of all but one 1.5 inch binder of samples of marketing materials I designed and a 1.5 inch binder of literacy projects.  The rest is all in the recycling bin.

I kept all my dissertation research and a small binder on graphic organizers.  However, I culled and culled and culled.  For example, all the materials and products from the Mother/Daughter Bookclub I ran for four years is in that blasted recycling bin.  SNIFF.  SNIFF.

I kept two workshop binders, one about hunger and homelessness and one on multicultural literature, even though I am most certain no one will ever ask me to do workshops again.  It was brutal, but I recycled all my materials on foster care and all but one resource on board governance and development.

I kept the binder of old medical records that probably could be tossed, but in there are things that still distress me.  I also kept the binder on the pit bull attack because the restitution judgment against the owner still stands, though no one would ever help me pursue collection.  And I kept my two binders on family history, though I despair of anyone else in my family being willing to take it when I pass on.

Another brutal culling was all of my publications.  I used to have multiple copies, but into the bin went all the extra copies and even all but one of the copies of the professional journals I edited.  SNIFF.  SNIFF.

I also took the time to go through my house renovation, house receipts, and household warranties binders to ensure that the contents in those three binders were only the most relevant.

I tossed the modeling binder, as I have each time I tackle that shelf and then dug it back out.  I don't need it, but the photos in there are the best ever taken of me.  No one wants them, but I cannot throw them away.  Such a brief, almost embarrassing stint in my life.

All in all, my office shelf is now about 75% practical and 25% sentimental.

Four times before, I have given away loads and loads of binders, top-loading sheet protectors, and various office supplies.  And yet I still have much, much more!

These two bags represent the binders I am willing to depart with this go round, along with MILLIONS of top-loading sheet protectors.  Lest you worry about my own top-loading sheet protector status, if you squint really hard at the bookshelf photo, you will see a thick stack of them on the bottom shelf of the black filing stack sitting on the left hand side of the middle shelf.  And I will admit that I kept four binders of each size of binders in a banker's box on the main set of shelving in the basement, even though I probably will not ever need that many binders again in my life.

I lived my entire scholastic and professional life organized with three-ring binders and top-loading sheet protectors.  SIGH.

It is my hope to find a non-profit who might be desirous of binders and top-loading sheet protectors. That I might find a home for the contents of those bags given just how much office supply money they represent.

I finally feel content with the items left on my office shelf, feel as if I have finished my good faith effort to downsize that space in my home.  It literally has been a four-year journey.  And, despite genuinely feeling as I have spent parts of the past five days discarding myself, I am glad to no longer have the painful reminders of just how much I have lost cognitively, just how much less capable I have become.  I think, perhaps, I will be avoiding this part of my basement less now.

[By the way, I am also looking for a home for a gazillion blank CDs and CD cases, too, the by-products of a project I did as a consultant and was given as part of my "payment."]

Wednesday, March 23, 2016

Divided me...

Last week in counseling, I was so distracted by the shirt my counselor wore that I could barely concentrate.  Eventually, I interrupted her to blurt out how bold and powerful she looked in that shirt, suggesting that if she were teaching a workshop or something, it was most certainly the shirt she should wear.

I go round and round with what was the "first symptom" of dysautonomia.  I know when I started fainting and started trying to get help for that, but I keep landing on other symptoms of NCS that have been around before that search.

I was sent to a cardiologist at the beginning of that period, and it occurred to me today that had I been treated differently, I might have gotten help sooner.  The first test ordered was an echocardiogram.  If you have never had one, whilst you can wear a gown, you are very, very, very exposed as the tech holds a sonogram wand over your heart.  I asked for, ahead of time, a female technician.  The day I arrived, there was only a male technician.  He walked into my room and I refused the test.  I asked, again, for a female technician, and was told that I apparently did not have a problem with my heart if my chief concern was the gender of my technician.

It was three years before I went back to a cardiologist.
Three years of fainting.

Having this thing happen to my brain wherein I become so distracted with a thought that all else falls away still, to this day, confounds me ... and shames me.  I once worked with a residential program coordinator whose eyes were so beautifully blue that I struggled to ever conduct a lucid meeting with her.  I think I would have been better off if I, like I did with my counselor, just stopped and told her that I found her eyes beautiful.  But I think that is weird.  Why were they so distracting?  Why the shirt?

A while later, in that same counseling appointment, pre-syncope washed over me.  Translate that, I almost fainted.  I know I vocalized what I felt with some words, but I do this thing where I try to push through with the conversation, no matter where I am.  I try to shove what's happening to my body to the background.  There I was talking when all I wanted was to be on the ground.  What would she think if I just laid down?

I stayed in the chair, despite being fairly certain that my counselor would not be one of those folk who become extremely disconcerted with my lying on the floor.

I found out that Dysautonomia International has medical accommodation cards for the different types of dysautonomia.  When I saw this card, I wanted one immediately, printed in color and laminated.  I saw it and thought that when I sit or lie on the floor in public, I could just hold it out to all the folk who seem so insistent that I get up off the floor.

The floor is my safe place.  Why don't people understand that?  Accept that?

Over the past few months, I have started fainting whilst sitting or lying down.  That's a "new normal" for me.  SIGH.  It is hard to feel safe when lying down doesn't keep you from fainting.

Basically, what I am trying to write about is the Divided Me.  The Me who ever so often has one part of her present in the exchange with someone and the other part of her trying to hold her body together long enough to finish her social interaction.  This happens most when I am standing, knowing there is a finite amount of time that I can stand.  From the first couple of minutes, no matter how much I am leaning against something, clutching my cain, or even draped myself on something, when the pain in my leg beings, I start calculating just how much longer I will be upright.  When talking, you generally do not move. Not moving means the effort of remaining upright is concentrated on few muscles ... that is to say the burden of standing is not borne as widely as it could be.

Gosh, how I hate checking in at medical appointments.  I seriously BOGGLES MY MIND that they do not have chairs and lowered counters for those who need accommodation.  Of course, this is far more difficult for me having had to walk from my car to that desk.  It is a far, far walk at the Integrative Medicine Specialist's office.  So far, sometimes I despair a bit just looking at the front of the building from my parking space.

But Divided Me happens all the blooming time, not just trying to stand and converse.  Divided Me is battling the work of holding a conversation with battling one or more of the following:

  • Dizziness
  • Flushing
  • Nausea
  • Abdominal Pain
  • Blue feet (cold and painful from Raynaud's)
  • Reduced or blurred vision
  • Chest pain
  • Palpitations
  • Headache
  • Migraine
  • Cold spells
  • Drop in blood pressure
  • Poor concentration
  • Word access
  • Ringing in my ears
  • Exhaustion
  • Blood pooling in my legs
  • Pre-syncope
  • Weakness
  • Anxiety
  • Shortness of breath
  • Roiling innards
  • Heat intolerance
  • Balance
  • Hollow legs
  • Sensory overload
  • Blood sugar drops

There was that birthday dinner that I tried to hold for myself a couple of years ago.  I worked so hard to have a lovely meal and a social interaction, but during dinner, stool began pressing on my vagus nerve.  I tried to hold myself together, but soon ended up sliding from my chair to lie on the dining room floor.  My guests were appalled, but I finally managed to get them to leave since I knew I was going to be on the floor for a long while.  Maybe ... maybe if they were someone else, I would have asked them to join me, to sit (or even lie) with me in misery.  But ... really ... who would do that?

Anyway, during that dinner, once the nausea and dizziness began, I stopped following the conversation at the table.  I tried.  Part of me did, at least.  The other part of me was busy calculating just how long it would be before I couldn't remain in my chair even if I wanted to.  I was fully engaged in Pretending Mode and only partially engaged in dinner.  Then, I was not engaged at all.

In thinking about Divided Me, I realize that, for the most part, I wish folk would go into interactions with me as if I have dementia.  That way, I think, folk wouldn't expect me to follow everything or to always be engaged.  To always be present.  I want them to understand, to remember that often I am only half there, the other steadfastly trying (and of failing) to ignore the ailments of my body.  To remember would keep them from always expecting comprehension.  Or response.  That way, I can still have interactions but also remain free to try to hold onto the pieces of me.

Though, to be fair, I have no clue how that could be, how such an interaction would go.  All I do know is that Divided Me is here to stay.  SIGH.

Tuesday, March 22, 2016

The dog I have...

Amos had never been confined before he came to live with me.  So, when I went to crate him that first night, as I have written, he was terrified.  That tiny little puppy threw himself at the sides of the cage with such fear that he knocked the crate over and over again.  He also pooped all over himself and the crate.

Thinking about that, I realized that that must have been the moment Amos' fear response was born.  I mean, I know he's a pup and not a person, but his greatest fear response is to poop, even if I have taken him outside just moments before.

That night, I tried crating him three times, I think.  Three times of cleaning him up.  Then, I thought, literally, "What would happen if I just let him sleep with me?"  I did.  We bonded.  Life is good.

Amos' fear was not a part of his life, aside from that first night at 10-weeks-old, until after the pit bull attack.  From that wretched day, fear is as much a companion to him as I have been.  He has progressed since then, learning to be away from me with less anxiety.  One of the biggest steps forward was when he finally could bear my slipping out of bed at night to go to the bathroom or fetch ice packs.  Granted, I tell him that I am fetching ice packs.  If I forget, he whimpers and whines and scratches at the door, if I shut it or trembles at the top of the stairs if I don't.

It took me a very long time to stop getting angry at Amos when he is afraid.  Not all the time, but sometimes I became impatient when, after spending up to an hour outside cajoling him, without success, to tend to his needs, only to have him poop inside.  Part of that was learning to recognize his fear triggers.  Part of it was to stop trying to force him to face his fears outside.  I will encourage him, but if after comfort he continues to want to go inside, we do.

In turn, Amos is more consistent about asking to go outside after we have been outside before, even if it has been two or three or four times of asking only to have his fear drive him back inside.  Eventually, we will find a safe spate of quiet and stillness needed for him to tend to his needs.

Before, I put him in timeout if he didn't tend to his business.  "No poo-poo, no momma."  Amos HATED it, but HATING it did not change his fear.  And Amos' fear is much, much, much stronger than his bodily needs or his desire for my presence.

I realized that I didn't have to understand his fear.
I just had to accept it.

Amos is a pup, not a person.  Yet trying to command him like a pup got me nowhere.  For years.  Giving up my agenda for him and moving to trying to help him have the fullest life possible has made our life together better.  Sure, I wish Amos were not plagued by fears.  It breaks my heart to see him tremble from head to toe.  And, honestly, it breaks my spirit to find his fear poop inside the house.  I wanted an easy dog.  I had that, other than with crating, until the pit bull attack.  Since then, I have the dog who is a survivor with wounds not of his own making trying to live his life as best he can.

Monday, March 21, 2016

For me...

I have had a thought ruminating for quite a long time until I just couldn't keep it to myself anymore.  A secret desire thought.  A thought about my house.  You see, I have five bedrooms and only one of them is really mine.  The rest, they are all for others.  Only, I have wanted the solarium to be for me.  Gosh, that feels so selfish!

It's just so crowded.

I use it to winter my plants, but I think of it primarily as a place for folk to sleep.  You see, in my mind's eye, I envisioned my home a have for visitors, especially given the traffic to the seminary and its January conference.  And I guess I thought I would have my own personal visitors.  I have had a few. And there was the Grand Visit of 2015.  But really this ginormous amazing incredible dream mansion of an old house is empty.

The solarium is absolutely filled with light.
Why am I not basking in it?  I ask myself.


I took apart one of the beds.

Following a suggestion of my mother's, I used two footboards to make a daybed.  Suddenly, the room became much larger.

I wanted a chair up there and thought about moving the GREEN chair (with help).  Mother suggested I move the GREEN rocking chair from the back porch.  [NEVER!]  I patiently explained to her that I am in it every day.  So, I looked on craigslist, eliminated all the non-economical rockers, and asked my interior designer mother to choose.  I thought I would be painting another old chair GREEN.  She surprised me with picking this style, given my house, but really does well in a solarium.

I want a floral rug.  I have no money for a floral rug or any room transformation as it is.  I did use almost the very last of this budget cycle's grocery/household money because I have just 7 days left.  After, you know, bargaining down the chair to $30.

As you can see here, I also dragged the area rug from the basement laundry space as a temporary filler.  To be blunt, I am fervently hoping that I receive some birthday money come June and can buy me a lovely floral rug.  Amos, however, needed something to land on after getting down off the bed.  And the room was ever so incomplete without a rug.

Mom then weighed in again.
Move the furniture.

I am not sure she understand how much puking and fainting I do when doing the things I shouldn't be doing.  You know, like moving furniture and playing hide the mattress (three rooms before I figured where to put the boxspring and mattress).  I was NOT going to do so anytime soon.  But ... but ... Mother really is a skilled interior designer and she does know spaces.

She had me move the bed to the west window wall.  [No, I did not know which way was west.]  Actually, moving the bed was not too difficult.  Moving the rug, however, changing its orientation meant fainting and falling and Georgie firing up the accelerometer quite a bit.

The room went from really cramped to opened up to feeling rather expansive.  I actually think that I could scatter the three large plants on the plant rack to the left and remove that rack.  But now that at least the large stuff is placed, I really did take a break from my ... my taking back a room of my house.

I fretted (am still fretting) about removing a sleeping option from the house.  Clearly one bed is still up, but one of the twin beds is now in four different locations.  Using a room that is a spare bedroom for a space that is more for me than for visitors feels so darned selfish.  "What if?" I think.  What if making this change means my friend with oodles of children now no longer wants to visit me?  The basement bedroom actually has a twin in the sofa chair in there.  And there is a queen pull-out in my couch in the living room.  I could still fill my house with folk, theoretically, but will that ever really happen?  Probably not.

Secretly (as in not posted to FB), I think that I just improved the resale value of my home, demonstrating the dual use of the solarium.  And, who knows, could a visitor come who doesn't want the full bed in the ginormous guest suite (I sleep in the second largest bedroom, not the largest) but actually wants to stay in a room full of sunshine?  Or, maybe, a visitor sleeps in that mint GREEN solace but savors time reading in the new (old) and rather comfortable (surprisingly to me) rocking chair.  And maybe making the space like this actually makes the airing porch off the solarium more of an invitation.

No, I haven't moved the artwork yet.  I wanted to wait until the bed found the right spot.  And, frankly, I have just a bit in there and they looked less forlorn over each headboard than they do now.  The two pieces in the servant's quarters actually have old GREEN velvet matting on them, so I might play musical artwork before all is said and done.

Would the space look just wonderful with a floral rug?

What tipped me over the edge?  What propelled me past the thinking stage?  My blood work.  Specifically my new GP's response to my blood work.  She wants me to see an immunologist.  I want to lie on the floor, drum my feet against it, flail my arms, and wail ... loudly.  I don't want to see another new doctor.  I don't want to have to find a way to be vulnerable with another new doctor.  I don't want to be touched by another new doctor or her staff (all that endless weighing and taking of vitals).  I don't want to have more exams, more tests, or take more medicine.

I am fairly sure that the issue with my pacemaker scar is going to require intervention, as in another specialist, another new doctor.  And swallowing, over the past month, has shifted from a bothersome issue from time to time to a frightening struggle to get food and drink to go down my throat from time to time.  I am fairly sure that when I more vigorously pursue that issue, I will be shuttled off to another specialist, another new doctor.  More exams, more tests, and possibly more medication.

I don't want more.
I'm good with the incurable, untreatable stuff I have now.

Something the counselor did for me—which I am not sure she understand how much it means to me—was to acknowledge my life, my chronic illness life.  She helped me to wrap my arms around my wretchedness and let it be okay (to me at least) to be wretched.  That hasn't really changed how I am treated by others (support or acknowledgment) but it has helped me to stop punishing myself for things I can no longer do even if I still greatly mourn Healthy Me and grief the losses in my body and mind.

I struggle, when in those FB support groups, with how nearly everyone in there is one this desperate journey to find treatment.  I understand the agony of those who have yet to find a doctor who actually understands and respects dysautonomia, but even amongst those poor folk is this common drive to Find Treatment and Get Better.

There is no Better.

Why do they not understand this?  There is treatment that helps individuals and that treatment may stop helping at any moment.  It is all managing symptoms and usually doing so with medications that have side effects that affect your symptoms.  And lots and lots of resting and water and sodium.  What helps one, may help no one else.  What helps many very well many not help you.  It's all madness, really, this traveling from clinic to clinic, repeating all the testing (especially the tilt table test—once is enough!), exhausting yourself, financially beggaring yourself, and chasing medical rainbows.

I have no desire to chase medical rainbows.

My appointment with the immunologist is April 11th.  I was responsible and called to make one.  To be honest, I haven't yet opened the envelope from her office to see what hoops I have to jump through before April 11th.  Containing my overwhelming feelings of ENOUGH OF THIS has been all that I can do.

That, well, and taking that upsettedness out on the solarium for me.

Friday, March 18, 2016

Puttering in the soil...

I haven't had the day straight since Tuesday.  Basically, it has been Friday three days in a row.  SIGH.

Nine days into the CLS setting, I do not think that it is any better for me than the motion sensor setting and wonder if switching back to the motion sensor setting at a higher level would be more productive.  Mostly, I see little rhyme or reason to the setting triggering the accelerometer.

For example, nine days of riding the bike since the setting change.  Only four of them have had the help of the accelerometer. Without that, the highest my heart gets whilst killing myself on the bike is in the very low 100s, but it is usually in the low 90s.  Personally, I think that makes exercising harder and why my pace is dropping the longer I'm riding.  Well, that an the whole exercise intolerance.  I also wonder what benefit there is.

The two times I have come back home from being out and was greeted by Amos, most enthusiastically I might add, the CLS setting thought I needed the help of a higher heart beat.  Frankly, I did not feel the need for the boost.  I do note that I get boosted when trying to kneel and get back up or bend over and get back up.  Rarely, though, do I get a boost transitioning from horizontal to vertical in my "mornings."

Mostly, I am un-impressed, even if I am having ample opportunity to "get used to" the accelerometer. Yes, well, I remain un-used to it.

The nightly testing, thanks to the daylight savings time, is now at 1:33 AM.  I sent an email to my cardiologist asking if I could get that changed.  But I have not yet heard back from him.  I had asked if the standard for the CLS boost is 130 beats per minute, because that's what mine is doing and I would prefer a smaller jump in heart rate.  I did not send a second email because I am mostly frustrated.  I mean, maybe the only help I'm going to get from Georgie is with the bradycardia and monitoring, not with the exhaustion.

Biking means that my days are primarily that and little else.  I am just too exhausted and my legs have enough work out of them that they don't work really well the rest of the day.

I roll out of bed around 2:00 PM, often nauseous.  I try to adjust to being vertical and get past (with the help of Zofran) the nausea.  Somehow, it is then 4:00 and time for medications.  I eat something and then spend the next two hours working up to putting on my sweating-on-the-bike clothing.  I bike, do the arm weights, stretch my legs (since I cannot walk or stand for a while), do the arm weights (every other day), and nap a teeny bit.  Then, I try to shower, which calls for more resting afterwards, if not napping.  I am usually nauseous again late evening, but I am also so weary that it is hard to put two thoughts together. I think about blogging, but rarely get very far.  The worst nausea and the writhing starts anywhere between 2:00 AM and 4:00.  It usually abates between 9:00 AM and 11:00.  So, I sleep until 2:00ish.

Today, since the bone meal I ordered arrived, I planted the six black lily bulbs (the type pictured above) that my mother sent me last week.  Lowe's was out of bone meal, so I had to wait for it to arrive from Amazon.  I forgot just how much Amos loves the bone meal.  We've been arguing over him digging up the bulbs, eating them, and eating the soil all evening long.  SIGH.

My bed is primarily yellow day lilies, but I do have some red Easter lilies in there.  I would like to have a bed full of a variety of lilies, so I welcome gifts of bulbs like that from my mother, even if I have to fend off my Fluffernutter until the smell of the bone meal is gone.

I also spend my 5 minutes on the dirt pile.

This is what I was left with after the sewage pipe repair.

If you squint at the photo, you will see, at the front of the pile by the bed, two bamboo stakes that mark the edges of the hole.  I should have taken another photo today, but I have systematically been trying to rake back the dirt toward the center of the hole.  There dirt on the non-hole ground is not going to sink, right?

It wasn't until I went hunting the first photo for Facebook that I realized just how much the clumps of clay had broken down with the snow and the rain.  That was a bit cheering for me, as well as how the pile had significantly sunk.

Raking the stuff is arduous.  I literally can barely get through five minutes of clumsily wielding the rake I borrowed from Firewood Man (mine broke with the weight of the clay).  Today, I noted good progress toward the lines from the stakes.  Maybe in another couple of weeks of daily feeble raking I can get it where the weight of the bulk of the dirt is located atop the hole into which it needs to sink.

I am dying to get the dirt covered, though.  Amos will run through it when the new (not nice) dog from next door starts barking at him.  He gets black paws and a black belly and I have to clean him up in the kitchen sink.  Sometimes two or three times a day.

It is exhausting.
And annoying.
And exhausting.

Having puttered outside a bit, I really did not want to get on the bike tonight, but I knew that if I didn't, I might never get on it again.  I really am not a glutton for punishment, even if it seems like it. Another month of this....

I would like to find a way to sleep between the late-evening nausea and the wee-hours-of-the-morning nausea instead of just passing the time.  Maybe if I sleep before and aft the worst spate, then I could get up earlier than mid afternoon.  Of course, that would mean that the testing really needs to be much earlier or much later.  The sending of test info happens at 4:00 AM.  Sometimes I am on the bathroom floor at that time, but I do try to get back to bed (near the monitor) around then.  I wonder if the test could be run then, right before the data send.

Anything ... anything to be less tired....

Tuesday, March 15, 2016

A place of smallness...

Instinctively. Intrinsically. Ineffably. We long for that which we've never known: connection with our Creator. Such sorrow Adam and Eve must have borne knowing what they lost when that connection was broken in the garden. It was a sorrow God shared with them until their deaths. On down through the millennia, it is a sorrow He bears alone.

In reading the research book on shame, I have begun thinking about connections in various ways.  Lying in bed the other night, I began thinking about the connection with God that we all long for, whether we understand that or not.  It is a connection that we have never experienced, never known.  I marvel at its power.  At the hunger in my soul.

Lying in bed, I grabbed my phone and wrote about that.  It was one of the few times of late that I was able to write what it was that I wanted to say, that the words came out in a way that I found satisfying.

Someone posted this on Facebook.  I saved to my phone and computer because sometimes you just need a smile.

Of course, I have reason to smile every single day.  My little Fluffnuter just loves his weighted blanket.

And the comfort of his babies whilst anxiously awaiting me to get off the recumbent bike.  He lies atop several and chews on a few and pulls out many, many, many of his babies from their bed for companionship.  

This is my copy of Dr. Brown's book on shame research.  All my annotated sticky notes sticking out the side.

I read a chapter.  Then I read it again to highlight it.  Finally, I read it again to add the sticky note annotations.

I think the book is important to me.  I think that learning shame resilience is my hope.  So, a while ago, I bought a journal after thinking that I wanted to take notes on the book, to approach it more like when I studied back in graduate school.  I bought a journal, because I wanted the notes in something that I could keep.  And, maybe, do some personal writing in it at the end.  

It took me a while to work up the energy and cognitive wherewithal to start taking notes.  Slogging through thinking is so very difficult and hurts my heart to know how much that has changed, to see what I have lost.  However, taking notes, reading the introduction and the first four chapters again, I noticed more than I had the first three times through.  Writing helped me to concentrate.

When I was taking notes, I came across two passages that I realized I wanted to share with the integrative medicine specialist.  I realized that I wanted to bring the book to my next appointment.  The appointment I have deeply feared since the moment I stumbled my way out of her office in January.  I was so very afraid.  Actually, I was ashamed and I have learned that I was afraid.

Then, it hit me that I haven't really been ... clear ... about what I thought was important for me to talk about in counseling.  I mean, I really want my counselor to tell me what she thinks is important to talk about as she reads the chapter.  Take the passage about how the brain stores trauma, all trauma, the same.  I had missed that and it helped me to ... I don't know ... maybe ... judge myself less.

So, I went upstairs to my sticky note stash and went through the four versions of GREEN to choose one for a different sort of annotation.  At first, I wanted the strongest GREEN, thinking I needed an affirmative visual message for myself.  Then, I changed my mind and went for the softest shade because I need much, much, much more gentle in my life still.  I went through the notes and the book and added the GREEN stickies to the top of the page, rather than the side.

Today, in counseling, I mentioned what I had done with my counselor and she was willing to start talking about them.

"When I feel shame, I'm taken back to this place of smallness where I lose that sense of context.  I'm returned to a small place—I can't see everything else.  It is just a small, lonely place."  (BrenĂ© Brown, I Thought I Was The Only One [But I Wasn't], p. xxii)

A small place.  That was/is my first annotation.  I couldn't say why, but that phrase resonated with me.  In fact, as I was reading the passage to my counselor, it struck me that she used the word "small" in some form three different times in such a short passage.  This woman speaking of shame was describing something I did not yet understand, but knew was important to me.

What I needed was what my counselor did:  she helped me understand the why of that phrase.  

I took micro notes on my sticky note, but I wish I could have captured more of the discussion so that I could remember it later.  What I think was most important was her helping me identify what smallness meant to me:  1) being insignificant and 2) being small again, being a child.  

When my counselor spoke the word insignificant it resonated with me.  She was using several words and that one stood out.  Wait, can you say what you said again?  It's a good thing she has a better rememberer than I do.

Chapter four is about the second element of shame resilience:  critical awareness.  In the intro, in what this woman was sharing about when she was in shame, you first read about losing the context of what is happening, of what you are experiencing.  Critical awareness is seeking/gaining/learning the context of your shame experience.  However, being awash in overwhelming emotions and, especially for me, in the stress mode of fight, flight or freeze, it is difficult to see that you are not alone, that others struggle, and that the shame is coming from outside of you.

That small place for me, being a child again, a bad child, paralyzes me and I want to flee, either physically, mentally, or both.  Insignificant.  What I want or think or feel doesn't matter.  I am brushed aside.  Diminished as a thinking person who has value.  

A place of smallness.  
A place where context is not possible.
A place where hope is absent.
A place where fear reigns.

The words I saw written so ... carelessly ... on my discharge notes after that appointment in January felled me.  They frightened me.  They shamed me.  In one moment all that I have been working toward when I finally managed to call the counseling program to ask for help, to try at healing again, was erased.  Wiped out.  Became insignificant.  

I was gutted.

Another label as equally devastating as sexual abuse victim to the possibility of getting care for my physical body.  Having dysautonomia is barrier enough.  But to have the label of sexual abuse victim means everything is psychological—even though abuse is not a psychological problem for the survivor—and the physical is ignored.  When your physical is caused by wonky nerves ... well, it is a devastating mix that foments many, many, many errant assumptions.  SIGH.

I have tried so hard to be more honest here, to be more real about my life.  But that label, what the doctor wrote, is still not something that I can see in black and white.  That was the first and last time I saw those words.  

They felled me.
They seared me.
They shamed me.

I could wish for another supernova before the 22nd.  I try to visualize myself walking back into the doctor's office and all I get is the impulse to hide.  Overwhelming impulse.

I do plan on going armed with my book and armed with a greater understanding of my place of smallness, of what I feel and think when I am in shame.

Saturday, March 12, 2016

CLS is my new friend...

Thursday was my next pacemaker interrogation.  It was the first one that I had since December 2nd, because the cardiologist was giving me extra time before enduring one again, in the hopes that I would become more accustomed to the pacing.

I have not.

I barely slept the night before, thinking about having my heart forced to beat by the test.  Each time the accelerometer goes off, it feels as if my heart is being squeezed, as if I am choking, and as if I cannot breathe.  I know those things are not happening in my head, but my body is most firmly convinced that they are.  I have struggled wrapping my mind around having another interrogation.

Unfortunately, I forgot that I needed ECG leads attached so that my heart could be monitored during the test.  I forgot and did not try to prepare for that.  The nurse technician held up the stickers and I burst into tears.  I struggle with such enormous shame when it comes to nakedness and exposure.  Having leads placed above and below upper my female parts should be easy but it is not.

I wept and shook and basically couldn't speak more than "I don't think I can do this."

The nurse technician was very patient and was primarily quiet for a long while.  At one point I asked her if police would come after me if I never showed up again ... you know, having this pacemaker inside of me.  I wept and kept trying to think about having the leads placed and not thinking about taking off my hoodie.

Then, the nurse technician did something extraordinary to me.  She took a deep breath and said, "I think we can do this."  Not you.  We.  She repeated it two more times, almost as if she was convincing herself.  She said that she could work around my clothing and at least place the top two through my collar.  The others she thought we could just lift my clothing and she could place without looking.  Then, again, "I think we can do this."

Before I really understood what I was doing, I nodded my head and got through being hooked up.  Well, not through it, but they were placed.  And we were moving onto the tests.

The thing is, even before the leads debacle, I was nervous because I have been doing lots and lots and lots of thinking about the settings on my pacemaker.  The first week I had it, when I completely freaked out, they turned off the CLS setting, switching it to the motion sensor setting.

What the CLS (closed loop stimulation) does is pace your heart according to how hard it is working, rather than how much you are moving.  The thing is, your heart can work hard just sitting, especially with strong emotion.  I felt like I was asking for a nightmare, however, I have been so bloody exhausted since the pacemaker surgery.

My average heart rate, on a monthly basis, has been 64 beats per minute (BPM).  Being on a beta blocker causes fatigue, but I have been bloody exhausted since the surgery and the cardiologist is trying to separate the side effect of mediation from the strain of a heart that isn't beating enough.  Hence, this is why the cardiologist has been keen on my starting cardio therapy.  It isn't high enough for how hard it is for me to stand for a length of time, much less walk up the stairs or take out the trash/recycling or schlep about a grocery store when there are no wheelchair shopping carts.  It certainly is not enough for me to try exercising.

Last year, I received an unexpected large check at Christmas and opted to spend it all on a treadmill.  I felt silly trying to exercise and haven't really talked about it much, but I thought that, push come to shove, I could rig a harness from the ceiling to keep from falling and walking on a treadmill had to be possible to some degree. I found a simple one and have been walking since mid January 2015.  Only what I can do is a measly 10 minutes a day and how fast I walk has dwindled from 1.5 miles an hour to .8 miles an hour.  It is just so hard.

The cardiologist wants me to do cardio therapy, primarily on a recumbent bike, where I would not be bearing weight as I try to exercise.  The co-pays for that are not doable, even if he could talk Medicare into approving it.  Plus, getting out five days a week for a few months would be too much for me.  So, I thought on the matter and went looking for a recumbent bike.  I found one that was approximately 75% of my grocery budget and bought it.  For the past four weeks (and two days), I have ridden on it (tortured myself) and eaten lots and lots of oatmeal (it was a good thing my freezer was overly full following the Grand Visit of 2015).

One of the symptoms of NCS is exercise intolerance, which is why my pace on the treadmill has gotten slower and slower.  Already I am struggling to finish my 30 minutes even close to the pace I was able to do the first week.  The cardiologist is right, though; I am able to do more than I can on the treadmill.  I huff and puff and sweat more than I ever did at the gym with the personal trainer.  I torture my body and yet my heart rate barely gets above 90 BPM.  It's not enough for such work.

That has been a large part of my decision to ask about trying the CLS setting again.  But I also know that the CLS pacemaker is the best for patients with NCS.  I have essentially been handicapping Georgie (my pacemaker) and my cardiologist.  Here this is this merciful technology that helps folk whose need is not based on large movements.  I need that help.

On the theophylline, I had a constantly high heart rate.  But I also had tachycardia and terrible spikes in blood pressure and dangerously wide pulse pressure (the difference between systolic and diastolic readings).  Making the move to the pacemaker was the right choice.  Only the pacemaker is doing far more work that the cardiologist thought it would be and my heart is just plain lazy about beating on its own.

During the testing, the reports showed that my measly little 30 minutes of torture were the most my heart has beat on its own for an extended period of time since the surgery.  I got brownie points for that.  The nurse technician was surprised at my suggestion about changing back to the CLS setting, but she agreed that it would be better. As did the cardiologist.

The cardiologist worked very, very, very hard to adjust the testing so that it would be less traumatic for me.  Georgie's daily tests and Hal's daily reports give a fair amount of information. A lot of that is repeated in an interrogation.  So, he stripped out the redundancies, using the data from the test and report from that day for assessment, and minimized what they needed to do.

Thankfully, the testing showed that the pacemaker leads have healed and are secure in my heart.  That means no interrogation for another six months (I am already campaigning for every 12 months, arguing that is a nice, round number).  Knowing that my cardiologist is willing to minimize the testing helps me immensely with the thought of the next interrogation, but knowing I need to have ECG leads placed beforehand is equally hard.  And rather discouraging.

I still feel, two days later, the brush of her hands against my bare skin and I cringe in shame and revulsion.  Even now, just typing that, Georgie is firing on all four cylinders.  Yes, I now have this barometer of my emotions sitting in my chest.  SIGH.

You chose this, Myrtle.

Afterwards, I was struggling with my emotions and called Becky.  As we talked, I calmed down, but each time my mind returned to the thought of being physically exposed, Georgie went off.  She was paying attention to what was in my mind rather than the words in my mouth.  Gosh, I sort of dread counseling next week ... wondering how it will be possible to get through it if Georgie is going off the whole time.  SIGH.

What is interesting to me is that the CLS setting is a learning algorithm.  I asked the nurse technician if she would forgive me if I needed the setting changed really quickly.  She assured me that it would be perfectly okay.  Then, I girded my loins and asked what would be a reasonable amount of time to stick it out, to try to endure the setting to give it a chance.  She promptly answered, "One month."  That's when she taught me about it being a learning algorithm and that the first week with it turned on would be much different than the fourth week with it turned on because by that time it would have adjusted to my body and lifestyle.  A modern marvel actually.

I am not sure if it is too soon to really notice that, but Thursday evening, Georgie did not fire at all during the bike riding.  My heart rate never rose above 93 BPM.  However, yesterday and today, Georgie kicked into action and, for the second half of the session, my heart rate never dropped below 130 BPM. That's more like it!  Did the CLS setting learn between Thursday and Friday???

I ride 5 minutes at the 2nd lowest tension, 10 minutes bumped up to the 3rd, and 15 minutes at the 4th tension setting.  That second switch of the dial has become harder and harder.  Even the first switch has been difficult.  I do not know how long I can do this or if I should, given the exercise intolerance.  My goal has been to do so until April 21st, my next appointment, so that the cardiologist has more than two months of data to examine.  Does cardio therapy have lasting benefits on my average heart rate, on getting my heart to work on its own?  If so, How much do I need to maintain those benefits? would be the next question.

In the first 24 hours, the CLS went off twice whilst I was not doing anything particularly hard or thinking things particularly difficult.  Both times, my heart rate jumped to the 130s and my blood pressure was higher than it has been since the surgery and starting the beta blocker.  I was bothered by that, but instead of wanting to call the cardiologist immediately, I told myself to just get through my 30 days.

30 days.
I can do this.
Can I do this?

I love what the beta blocker is doing for me.  I was so worried about strokes with my spiking blood pressure and pulse pressure.  And tachycardia just stinks.  All three make me feel even more wretched than I was.  More so, I have been increasingly worried about my asthma and not being able to take the emergency meds (unsafe to do so because of my heart and blood pressure).  The beta blocker blunts the malfunctioning, disproportionate responses of my body.  But without the constant heart rate increase of the theophylline, bradycardia comes into play.  Hence, Georgie.  As my female surgeon pointed out, daily Georgie is saving my life.

I want this treatment protocol, but I still doubt that I can actually ... endure it.  I find it difficult to see past the next week with it, much less the next month or year.  I have not gotten any more used to the accelerometer or how it feels.  I struggle with both the emotions surrounding the pacing and then my emotions about how poorly I am handling being a pacemaker patient.

Reading the book on shame research has already changed some of my thoughts, but I honestly doubt I will ever be free of the shame of my body.  I might become more resilient during those times of shame—at least I hope so—but free of it?  No.  How could that possibly be?  I loathe that I have something in my body that requires it to be exposed to doctors for the rest of my life.  There is so much that I did not understand when I agreed to its implantation, but having regular ECGs was definitely not something I knew would come into my life.

I wonder, in the quiet of my mind, if I asked for the CLS setting because I would not be able to deny when my emotions are getting the better of me.  I wonder if I wonder if the CLS setting might actually help me, since I feel the pacing so strongly.  Wait, let me clarify.  I do not feel the near constant pacing at 60 BPM, but I feel the accelerometer every time it is used to suddenly increase my heart rate to support what I am doing.  I wonder if I asked because I wanted to be sure that I would keep working on emotions and shame even though it is so hard.

And I feel so alone.

30 days.
I can do this.
Can I do this?

Wednesday, March 09, 2016


The pacemaker incision/scar has been the bane of my existence.  It hurts, something fierce, burns and stings and is basically a bit of misery on my chest.

My new GP advised me to start using Mederma on it.  Well, it turns out that I am allergic to Mederma.  Most likely.  I start using the stuff and then a deep red rash began spreading from my scar to my jaw and down from my scar.  Deep red, hot to the touch, bumpy, and incredibly itchy.  I have been using benedryl and cortisone cream for days and days to try and stop the rash.  It is no longer spreading and is much, much better, but it is still red, warm, and itchy.

I discovered rough, scaly patches of skin on my legs and arms that I think might be because of the beta blocker.  I don't look at myself very often, but I kept feeling something on my arm.  I finally looked at it and, well, I FREAKED OUT.  I think I might have psoriasis.  If it is the beta blocker and I stop it, then the skin condition would get better, but I would react to all beta blockers.

The cardiologist said that we could substitute a calcium channel blocker, but it would not be near as effective as the beta blocker.  And I am not thrilled with the common side effects of calcium channel blockers, being somewhat of a Side Effects Queen.  I am mulling the matter and trying to ignore those sci-fi movie patches of skin.

The flushing in my face is now daily and my skin is oft red even when it is not hot to the touch.

Basically, I feel like a freak.  A grotesque one at that.  And I am a doped-up freak, with all the benedryl, so I am not thinking all that clearly.  I took a break this morning, but I still napped most of the day because it is so very difficult to clear such drugs from my system.

This evening, with the warmer nights, I decided to see if the pile of screens in the garage fit the storm doors on my front and back door.  Yes, they did.  Yes, I fainted switching them out.  Yes, I have a nice breeze flowing from the front of the house to the back at the moment.

The screens, having been in the garage at least 5 years, if not more, are filthy.  But cleaning them would have meant hooking up one of the hoses in the dark.  I was already exhausted, so I decided to ignore the dirt for now.  Most of the work was trooping back and forth from the doors to the garage, going up and down the ladder.  I also had some very, very, very stubborn screws that kept my arms above my heart for far too long.  Those I sprayed lubricant on, so I won't have trouble when it comes time to clean the screens.  I am not sure it matters, but I did remember to mark which glass pane went to which place on what door for next fall.

Of course, if money were not an issue, I very much would like to have new storm doors since mine are ancient and decrepit.  Fantasy, I know.

I am worried about the warmer weather coming.  Already we are having higher overnight lows, which makes for a very warm bedroom upstairs.  However, the lows are not high enough for me to switch to air-conditioning.

I am worried because at all of the recent doctor's appointments I have had, the thermostats have been set to 72 degrees. I left the appointments sweating, shaking, and exhausted.  The heat is bothering me more, at lower temperatures.  To put it another way, I get sweaty and shaky puttering about the house when the thermostat rises above 65 degrees.  I am worried that my beloved AC will not be sufficient this summer when it comes to my rather warm bedroom.  SIGH.

I think, perhaps, spending days drugged on benedryl is getting to me.
I think, perhaps, I am a bit too grumpy.
I think, perhaps, I am not thinking all that clearly.