Monday, November 30, 2015

But I am not...

Depending on who you ask (me or others), I melted down either five or six times in the hospital.  I have been thinking a lot about how difficult it was for me in there, the plans I made, and how they failed.

Primarily, I had planned to be surrounded by my helps, but the majority of those helps remained in my backpack or the closet/cabinet out of my reach.  I failed to communicate with Becky that I wanted them out and I found myself most reluctant to ask a nurse to dig for something that I wanted.  For example, I brought a framed photo of Amos to have as a focus point. It was in the prep room, but then was out of sight until I left.  That was a clear fail, because looking at it does cheer me.

I also had several scents and the electronics in a small bag so that I could have it in the bed with me. I would get it out, but it would get cleared back to the closet/cabinet.  So, I did not have much access to the scents.

About the only thing that I had for comfort was blankets.  And, well, by the end of my stay, I had enough blankets for Becky's family and her parents and pretty much all of her relatives in Pennsylvania.  Sometimes the nurses would make note of them, but usually it was just to see if I was too crowded with them.  I was not.  I even wanted more.

When I first arrived, I assumed that I would be in the hospital room and could set up all my helps for when I woke up after the surgery.  That was not the way things went.  I was first taken to a small prep room that was outside the procedure room.  Panic began to envelope me.  Honestly, the only reason that I did not become more upset than I was lay in the fact that the surgeon agreed to let me where this ... well, I don't know what it call it ... into the pacemaker implantation.  Forget the fact that he had already agreed that unclothing was fine and I had interpreted that to mean both underwear and bloomers.  I was trying to figure out a way not to be bare up top.

The day before the implantation, I was searching for a front clasp bra when I spotted these thin, stretchy bra things that had just thin straps, like the undertanks I have.  They are not meant for support or any real purpose that I could see.  The undertanks I could wear into x-ray, so I was hoping that the simple covering would be okay, even if it had to be cut off.   I was shopping because I was trying to figure out how to get covered again after the surgery. In fact, that was Becky's primary charge:  Get Myrtle in some sort of bra.  So, learning that I would be rather covered and modest going into the pacemaker implantation was such a shock it helped me to calm down, eventually the shaking stopped and the tears dried.

Of the meltdowns, the second worse was in the procedure room.  I have never been awake/conscious being wheeled into one and all the equipment was overwhelming ... as was the table with the things for the arms to be outstretched and strapped down.  I do not do well being strapped down.  I tried to tamp down my anxiety, but it got worse and worse as the four nurses were starting to apply all the pads and wires and tubes to my body. At one point, I cried out: "STOP!" and they did. I then asked if just one part of me could be uncovered at a time and the rest kept covered.  They agreed and changed the process of all the sticking of things to my body.  But when my gown was unsnapped and the back part fell off and I felt their hands on my bare skin, the shaking and weeping exploded into this ginormous storm of fear and the poor nurses were hard pressed to help.  One draped her body over my lower legs (probably to keep me from shaking my way off the table) and one was frantically trying to get me logged into the computer so that they could go ahead and give me the versed.

I know that there is a lot of negative advocacy against versed out there, but, for me, it is perfect.  I have absolutely no memory from hearing that the medicine was going into my IV until being back in the prep room.  I have just a fleeting memory of that and really was not lucid until being wheeled into the hospital room.

The worst meltdown actually started in the morning and built up throughout the day until Thursday evening.  You see, there is this process called a pacemaker interrogation.  During the interrogation, a tech takes control of the pacemaker and has it manipulate your heart rate so that the two thresholds will be breached and the efficacy of the pacemaker can be recorded.  Everyone said I wouldn't feel it. I did.

Oh, how I did.

I felt as if my heart was being squeezed and the pressure built up and up and up and it hurt.  I asked the man what he was doing.  I could feel the pacing, the electrical current, and I was stunned.  I tried to ask him to stop, to wait before doing the next threshold, the lower one, but he either did not hear me or respect what I was asking.  He actually started before he said he started because I could feel it.

That interrogation sent me into a despair that, in all honesty, I have been able to hide, but not shake.  Having someone control the machine that then controls your heart is inordinately disturbing.  I do wonder if I felt it because of dysautonomia, because of my wonky, wacky nerves.  I could not see a life of having to go through that again, could not imagine wanting to live it, to choose feeling that again.  I couldn't get an answer if I would, but mostly heard that I would likely need to do it each time my pacemaker is replaced (every 10 years).  Immediately, I seriously planned to be dead before those 10 years are up.

I shoved all the terror I was feeling over having a man force my heart to do whatever he wanted without any say in the matter as deep down as I could and actively tried to disassociate.  Only, later, I was grumpy with Becky and hurt her, I think.  My plan for the hour of her return was not what her plan was and I was lost and alone and scared ... really, really, really scared over what had happened.  But I did want her to go home to Amos and be with him and to have some time to herself.  I did want that.  I guess I wanted both.  I wanted Amos tended to and my friend given a break and I wanted her to crawl in bed with me like you see people do for folk in the hospital on television.

No one crawled into bed with me.

Then, later, the next nurse change took place and from the first exchange with her, I felt like I was going to battle and the seemingly impossible tasks of asking a nurse whom I found combative to go to the bathroom with me every hour took over any rational, sensible, reasonable bit of me I had left and kicked it out the door, down the hall, and out into the parking lot.

I had texted my counselor, obliquely, hoping she would visit, even though it was Thanksgiving.  I wanted to tell her, and not Becky, that I was losing my grip on the ability to stay safe.  But her arrival came just as the new nurse came and things were ... hard.  I tried to say what I wanted but I was too ashamed over my fear and too despairing over what happened that morning and rather ... hopeless.  I became more and more upset until my counselor left and found the charge nurse.  I bumbled and bawled my way through trying to say that I couldn't stay with the new nurse.  I wanted to be home with  Amos.  I wanted to be home where I could crawl into the corner of my closet.  I wanted to be home where no one would take me to the bathroom.

The upshot is that Parkview Medical Center is the most extraordinary place on the planet.  It just is. I cannot imagine another facility working harder to both empower survivors of abuse who had to be touched and stuck and cut and such and to make them feel safe.  I was truly scared, having already been fired by a doctor in the past month, that news of my colossal meltdown would cause the cardiologist to do the same.  Plus, this is the hospital in my network, so I will have to be there any time I need medical help.  I had visions of being blackballed for saying I couldn't have that night nurse.

I did not eat much in the hospital, but after the nursing switch, before Becky left for the night, I finally ordered some food.  I laughed with Becky and played a game (I think) and managed not to beg her to stay when it was time to leave.  But I kept cycling through moving away from my fear and then falling back into it, trembling from head to toe for the rest of the night ... or at least until about 4:00 AM.

I think I did a good job of containing it until Becky left, but afterwards, being rather ill from stool pressing on my vagus nerve, I failed to do so.  And thus the cycling.  Now that I am home, and Becky is gone, the cycling has continued.  Being overwhelmed with abject fear and despair and forcing myself to pretend that all is well.  That I feel the pacing at my upper threshold and feel the daily pacemaker self assessment is making all of this more difficult.

The nurse who was switched to my care was very young and very new, but she treated me just like I needed.  She got down low so her face was at the same level of mine, like you would with a child, and repeated that it was perfectly okay to have asked for the change.  She said it was smart of me to recognize and ask for what I needed.  She also spent time during the night hours, when I was awake, teaching me more about my heart.  And she repeated what I needed to hear many, many, many times as if the repetition was just part of the protocol of my care and not something unusual ... or childish.  It was her promise to watch over me, if I put on the headphones and slept, that helped me do so.  Each time I woke, she came in immediately to let me know that I was still safe.

One of the times I woke, I did not know where I was.  I cried out and she told me, very matter of factly, that I had had a pacemaker, that I was at Parkview, and that I would be going home to Amos soon.  She did not make me feel childish for my fear.  She just calmed me.  I wish she were hear now.

I want to be the person who no longer feels the hands on the bare skin of my back.
But I am not.

I want to be the person who does not associate my hear being forced into a rhythm with an attack.
But I am not.

I want to be the person who is not filled with suffocating shame when her weaknesses are on display for all to see.
But I am not.

I will admit that it is rather difficult to stuff yourself in a closet if you have just had surgery and are limited in the use of one arm.  And it is rather difficult to stuff such shame and terror deep inside and pretend that all is well.  A migraine is starting ... well, started a while ago.  I have been holding off taking my medication so that I could write ... so that I could try to capture some of what happened so that, maybe, one day, I could reframe it to something less ... harmful ... to me, less of a failure, less of a disgrace.

Sunday, November 29, 2015

Georgina Rose...

Having been greatly encouraged to name my pacemaker on several fronts, I chose: Georgina Rose, whose nickname is Georgie!

Why a variant of George? Well, it was St. George who battled dragons, and Becky helped me put words to this ... feature ... of the pacemaker I find disconcerting.

Poking the Dragon:  After having run for a while, the pacemaker conducts an efficiency assessment and adjusts how it paces my heart. Twice now, the dragon has been poked. An extended period in which the pacemaker stretches, flexes its muscles, rapid fires its weapons, and shows the beast who's in charge. It feels electrical, mechanical, and totally foreign. But at least, now, I know that my heart is not actually having a coronary event, but rather a pissing match is going on between it and the pacemaker as to who gets to be in charge.

Standing on the sidelines, I haven't yet decided whose colors I want to be waving in support. The cardiologist told me he can turn off the feature. I definitely want efficiency and longer battery life. But Poking the Dragon is rather distressing to have going on inside your body.

That really, I thought, was going to be the most difficult part of having a pacemaker.  Difficult after getting past all the difficulties in the hospital.  However, this day has found me descending ever deeper into discouragement because equally disturbing is when Georgie paces me down from a high heart rate.  It feels as if my heart is being squeezed and jolted and it is difficult to breath during the pacing.  Thus far, today, it has happened eight times.

When Georgie paces me off the low heart rate, I feel it, but only mildly so.  I stop and pause and then try to breathe and relax.  This quivery sort of prodding, I think, is how I would describe it.  When Georgie paces the arrhythmias, I barely notice, if at all.  In the hospital, the nurses would often point out when I was being paced and I felt nothing.  It was those moments that made me feel as if I could live with a pacemaker quite easily.

The first Poking the Dragon (self-assessment) happened around 1:00 AM Friday morning.  I was worried, since I was sitting, and the nurse fetched the strips from the records room to show to my cardiologist.  Later that morning was when he explained the feature.  The goal being to extend battery life to its fullest.  He said that he could turn it off, if I wanted.  But knowing what is happening makes such gyrations taking place within less concerning, less disturbing.  I told him we could keep it for now.

I came home.  I started getting up from sitting down, from laying down, standing for much, much, much longer than a short trip from the hospital bed to the bathroom, and ... and the top rate of my pacing suddenly became an issue.  Each time it has happened, I have found it more ... disturbing.  I cannot fathom ever getting used to what I feel as Georgie is forcing my heart to lower its rate of beating.  

In the hospital, each time I went to the bathroom, my monitor would beep, because my heart rate was rising, but I do not believe it ever got as high as it has been at home.  Thus far, the highest I have seen is 151.  My rate window is set from 60-120.  So, I spike and Georgie goes to work.


As the day has worn on, I find that I am most reluctant to get up.  I have started thinking things like:  I am not really hungry.  Drinking is not all that important.  Both activities would lead to getting up, the latter many times.

I admit that I felt the pacing when I got up with Becky here, but with Becky here all is easier, brighter, better.  I could shove aside my fear to be brave in front of her, especially because I think that Becky saw plenty of fear in the past few days.  She didn't need any more.  Plus, I was already grumpy Saturday morning because I fainted when I first got out of bed.  I knew that Georgie did not come to live with me because of the fainting, but I had not fainted in the hospital ... being on a raised bed and all.  SIGH.

Being alone again, today, each time Georgie goes to battle, I find myself longing to go hide in a closet ... or take to my bed with "vapors," never to rise again.

Being alone, also, makes it more difficult to avoid thinking about the times I melted down in the hospital.  The whys and wherefores and what was left of me in those moments.  I am not ready, I think, to absorb those meltdowns and find a way to reframe them as anything other than failure on my part to ... rise above.

At least Amos does not mind my desire to remain in the GREEN chair.  He's been recovering from his trauma of separation by taking copious naps draped atop my person.  I missed my little Fluffernutter greatly.  I, too, am not yet caught up on holding him, twinning my fingers in his curls, and savoring his snores.

Monday, November 23, 2015

What I could...

I have tried to get the house ready as best I could for coming back from the pacemaker surgery, knowing that I will not be able to do much then.  Not everything I wished to tend made it to completion.  But I reached my limit around 9:30 this evening.

I got the floors and the servants' stairs vacuumed, the wood floors and the main staircase Swiffered, the bed stripped and changed, the laundry done, and the dog bathed.  I watered plants wintering indoors, including the hanging baskets.  I brewed tea and mixed up Gatorade.  I laid a fire for a time when I feel most particularly poorly to cheer me up.  I took out the trash and the recycling.  I refilled my 7-day medication box.  And I finally remembered that one of my prescriptions is at a separate pharmacy (I usually forget until it sends me a text) and called for an early refill on the morrow.  I am hoping to get the bathroom cleaned tomorrow, but that day is already full.

I have counseling, which is always tiring, and two pharmacies to visit. I also need milk, paper towels, and a few other sundries.  And I need to finish packing.

In part, I stopped because the breathlessness I have been battling got so bad that I was quite worried.  And I was having another spate of fluttering.  I just dislike this so much and hope the pacemaker does make a difference.  Even as I am afraid of what Wednesday will bring.

Tomorrow, though ... tomorrow will bring Becky to help me get through to Friday.  I hope.

Sunday, November 22, 2015

And even closer...

Days passing ... far less productively than I had hoped.  The time between now and when I shall be doing nothing more than merely existing is dwindling far more quickly than I had hoped.  What I have left to accomplish, I believe, is more than I can do.  At least I got a batch of roasted rutabaga and parsnips beer cheese soup made.

The last two times I have cooked with chipotle peppers, now, I have miscounted and ended up with extra spiciness.  Having been a person who never ate anything spicy, I certainly have learned to enjoy a bit of heat.  A bit.  I was surprised, however, that with 36 ounces of cheese and 32 ounces of milk, that the soup was a spicy as it was.

I have my trust paperwork all in order and available should it be needed.   I have the notes for Amos' care.  And I have made serious inroads on the organization of my computer, shifting from what I think makes sense to what is a tad bit more logical.  I have also worked on deleting whole swathes of my life.  Of that I am two minds ... but the Trash folder is already emptied.

The curtains have all been washed and rehung, with the windows cleaned whilst they were being cleaned.  The house is certainly brighter.  As is the silver.  Finally!

I have been trying to think of things needing doing before company comes the week of Christmas, such as the silver and the curtains (and windows) that I will not be able to do for a while after the pacemaker surgery.  I have also tried to think of things that need doing in case of emergency, such as updating the trust paperwork and getting it organized.  And I have tried to think of things that are important for being away from the house for two days, even though Becky will be here and two folk will be checking on Amos.  The later is why I finally addressed the deadbolt on the door to the garage.

When I paid to have it installed, I did not check the work.  These days, I have learned, you really have to check everything.  So, the contractor did not center the deadbolt in the hole of the striker plate so as to allow for movement in the wood as the seasons change.  That means that during cooler and cold weather, the deadbolt hits the bottom of the striker plate and cannot be locked.  I could not just move the striker plate because its screws were set too close to the hole.  The top screw would have nothing to grab onto in that case.  I looked for and found a striker plate with a larger hole and, thus, screws set further apart and installed it.

I am not skilled in drilling holes.
Even with plenty of tools.
It was laughable.

But the door locks and the garage, therefore, is once more secure.  One more thing not to worry about.  Only.  Only worrying about all these little things is helping me to keep from worrying about the big thing.  About the pacemaker.  And my heart.

I really like to tell myself, after that really bad day, that the palpitations were better.  I do have whole days in which I am not worried about what is going on with my heart.  But the reason I first called has continued to be a problem.  I have minutes and even hours were the flip-flopping and fluttering is non-stop.  And most everything I do leaves me short of breath.  I dislike that.  I dislike it greatly with asthma attacks, but without it being from asthma, I dislike it even more.  The other night, I spent the entire night trying to catch my breath.  It was exhausting and terrifying.  Thank goodness I had silver that needed polishing to dwell upon.  No more, though.  All is shiny here.

I need to do laundry, change the bedding, bathe Amos, and fetch prescriptions at the very least before Wednesday.  I would like to vacuum.  My dust bunnies' dust bunnies now have dust bunnies themselves.  A true scientific marvel at just where all these dust bunnies are coming from.  A distressing scientific marvel.  I am not sure I will be able to vacuum.

I would also like to lay a fire, since carrying wood after the surgery will be difficult.  I will miss my fires and thought the possibility of one in the first few days might cheer me up. Even if I do feel better much sooner than I think, the carrying restriction is for two months.  Filling a fire place one log at a time, making a gazillion trips between the firewood rack on the back porch and my fireplace does not seem all that doable.

I shall miss my fires.
I shall miss my fires.
I shall really, really, really miss my fires.

As for the impending visit, I had planned to cook my way through it, having a captive audience and as a way to keep busy with all the folk here.  I am beginning to wonder if I will be able to do so.  I wish I had an idea of just how bad the first few days will be, how long before I can at least putter about the house, and how long until I can pick up my beloved Fluffernutter once more.

Amos, the poor pup, has become increasingly agitated as I have practiced packing my bag for the hospital as my friend Mary suggest that I do.  It is a good suggestion for me, but not for Amos.  Today, he has insisted in being in my lap if I am sitting and being held if I am up.  If I were not so worried about being apart from him for the first time in nearly five years of constant companionship, I would find it a bit endearing.  Annoying, too, I should admit.  It is hard to get anything done with a clingy puppy dog.

An adorable clingy puppy dog.

I know there are bazillions of folk the world over with pacemakers, but I am terribly frightened about this, about getting through the procedure without any ... hiccups.  The closer I come to pulling up to the hospital, the worse my fear grows (as do my dreams).  I wish it were different.  I wish I were stronger.


Wednesday, November 18, 2015

Inching ever closer...

I very much dislike that I am missing so many days here on my rememberer.  But I am rather overwhelmed by all thoughts pacemaker.  SIGH.

I know.  I just know that there will be at least some good—provided the implantation is successful—to having a pacemaker.  Take early Monday morning.  After I posted my desperate post, the fluttering and flip-flopping got ever so much worse and I could barely catch my breath.  With my whole being I, Myrtle, actually wanted to be at a hospital.  If my cardiologist was not on a mission trip to Honduras this week, I am fairly certain I would have gone.  I was rather frightened and mostly just clutched Amos.

It was a rough night.
I am hoping the pacemaker will bring fewer rough heart moments.
Freedom, really, from the theophylline.

However.  However, my sleeping mind is obviously most certain that I am going to die during the surgery.  That is all I dream about.  Whenever I close my eyes.  Every bloody night.  SIGH.

My worry is so deep that my face has exploded with blemishes.  Frankly, I believe one should not have blemishes at 48.  And I most particularly believe that you should not have stress blemishes.  I mean, the whole world can see how I am doing just by one glance at my face.  When I was younger, this was never a problem.  SIGH.

Today, I had the umpteenth call about the surgery, verifying once again that I am neither a truck driver, a hunter, a welder, or one who works on large engines.  I also heard, again, about having the leads screwed into my heart muscle.  Oh, how I wish I could stop hearing that description.  I have never been a fan of the idea of a pacemaker, of a machine in a body, and now here I am getting one.  In just seven days.  GULP.

Yesterday was counseling.  It was rough, really, really, really rough.  Yet it was also ... intriguing.  I got a glimpse, I think, of possibility and, for once, I was not all that scared.  However, I am absolutely despairing over the notion that I could learn to change thoughts that I have had my entire life.  Things I learned wrongly at the hand of pedophiles and yet still believe, even knowing the source, because they make sense ... they fit my life.

While I am still rather distressed over the thought of the pacemaker implantation, I was blessed to have Michelle (author of Living with Bob blog) repost an old blog to her Facebook page that was on scars, one of which is from her pacemaker.  She linked in that post to one about getting her pacemaker.  And when I commented on the FB post, Michelle sent me a link to a third post about her pacemaker that was a Q&A version.  In the comment exchange, another woman with dysautonomia who has a pacemaker mentioned that she was working on a draft of a blog entry about it.  She sent me the draft and then exchanged emails with me regarding further questions (and some of my fears).  Between Michelle and Sarah, I finally have a fairly good idea of how the recovery might go for me, but, more importantly, how the first night or two might go in the hospital.

For instance, I learned that I will need to remain laying down for four hours after the surgery.  That means I will not be able to use the bathroom during that period.  That means using bedpans.  Learning about that ahead of time helps me to gird my loins for that.  Sarah also mentioned that I should bring a roll of toilet paper for that time so I can have something soft and something that I do not have to ask for if need be.  I thought that was a good idea.

Both also wrote about pain.

One way I describe dysautonomia is a malfunction of the nervous system.  But another way to explain it is that dysautonomia causes an exaggerated/disproportionate response in your body.  Sarah specifically wrote about that with regard to pain.  I was reading her words and practically screaming:  YES!  Knowing that both women were up all night, unable to find any medication to touch their pain helped me to be ready for pain myself.  I have a high pain tolerance, so I think that I can bear the first night, now that I know what to expect, now that I know what could be.  And I will not be so desperate for relief and sleep if I go into the experience not expecting rest.  Then, if I can rest that first night, I will be doubly blessed.

I was so very thankful for both women, Monday, and continue to be.  I am thankful, too, because I see the happenstance of a repost as provision from God for what I needed.

My friend Mary told me that pregnant women are oft encouraged to pack/repack their hospital bags so that they can feel better prepared for going to give birth.  I thought that sounded like a good idea, but I did not realize how much it would help me to get started on that process.

I have three duffle bags that could be termed "overnight" bags, one of which perhaps a "weekender."  That one is GREEN and would be my first choice, but I think it will be heavy (for surely I would fill it up) and a bit too much for Becky to carry, since she will also have my pillow and my weighted blanket!

Right now, I am practicing packing with the medium-sized duffle bag.  I have pajamas and socks and such packed and have been pondering, as my counselor encouraged, what I might bring that would help me to feel safe, irregardless of what others might think.

I decided that I wanted to take my ancient GREEN backpack for my personal and comfort things.  Again, I have three options, two of which are GREEN.  But the GREEN one from the trip to Italy would be a bit large and the grey computer one is so very impersonal.  For a while, I panicked because I could not find my ancient GREEN backpack, the one that I carried throughout all my college degrees.  However, I finally remember that I keep it on the back of my wheelchair.  Fetching it was a hard moment, for I realized that I have not been out, save for Becky taking me on errands that one day) in well over a year.

Time has flown.
And I am alone.
The backpack was very, very, very dusty.

Mary has also encouraged me to take my laptop. I thought that I would not want it.  Or, more honestly, I thought that I shouldn't want to take my laptop.  But now I feel as if I could ... without feeling burdensome about it.

So far, I have thought that I would have my phone (with the special playlist), headphones, iPad mini, and laptop, along with granola bars, some of my roasted seeds, the balsam scented greenery from the evergreen tree in the back yard, the lavender/peppermint essential oil, the amazing lotion that I tracked down from an airplane sample to Canada (orange bergamot, lavender, and honey scented), and a deck of cards for solitaire, even though I can play it on my phone so that I will start moving my shoulder immediately (both Michelle and Sarah warned me about frozen shoulder that can happen after pacemaker surgery).

I wish that I could bring my candles.
I wish that I could bring my heating pad.
I wish that I could bring Amos.

I have also been slowly taking care of things that I realized I would not be able to do after the surgery.  Timely things, such as lopping down the rose bushes and pruning the honeysuckle, the burning bushes, and the forsythia.  I did not do the work all at once, but it is done.  The pump from the water fountain is clean and dry and stored in the basement.  I also got all my specialists paperwork in order and organized the 2016 Medicare books that came last month.  Those could have waited, but I wanted to review the changes once more because of all the budget shifting I will need to do.

In part because of the ginormous-to-me cost of getting a pacemaker ... in part because I bought headphones so that I could have my playlist at the hospital and GREEN compression stockings so that I could take a bit of courage into the surgery.  With the plane ticket and those "bolstering" expenses, the surgery cost is a bit overwhelming.  Frankly, one of my plans is to only buy milk for my "groceries" in December until my guests arrive at the end of the month.

They would all be happy eating out every night.  I wanted ... want to cook for them.  Who knows, now, what I will be like 4 weeks out from having wires screwed into my heart muscle! 

I still need to polish the silver and make the two other dishes I have ingredients for in the next seven days.  I need prescriptions, especially a refill of the hormones with my name attached to the blister pack, not the case.  I need to do laundry and bath Amos and change the bedding.  And I really, really, really need to vacuum.  My dust bunnies have dust bunnies.  SIGH.

Seven days.
Inching ever closer....

Monday, November 16, 2015

On my mind...

I just started a spreadsheet for the pacemaker implantation, because I have always had rather great health insurance.  Every surgery, every hospitalization has never been more than a co-pay or two.  In fact, I have never had a hospitalization with an overnight stay generate a bill.  That will not be the case with Medicare.  For example, I did not realize that there is a rather hefty co-pay for each day of the first six days of a hospital stay with Medicare.  As in it will be over $600 for the two days just for that co-pay.  Then there is the co-pay for every doctor for every visit, thankfully I will just have one doctor as long as there are no complications.  And the co-pay for anesthesia.  Reading my plan documents, I cannot figure out if I will be charged for all the medications, because I would rather bring my prescriptions from home if that is the case.  However, I know that is not allowed.  Add the spreadsheet to the plane ticket and I am immensely overwhelmed by the costs.

A weakness of mine, I have come to notice, is that when faced with overwhelming expense, I have this irrational and difficult-to-ignore desire to practice retail therapy.  By that I mean, at this very moment, I am thinking I should just click on the confirm button to finally buy myself a stand mixer.  Or perhaps headphones since I would need them to listen to music in the hospital.  Unfortunately, I am not so sensible to practice retail therapy by finally buying long-needed new glasses.  After all, is it really important that I see well for anything other than distance (driving)?  SIGH.

To distract myself, I just chowed down on a custard dish of those pickled carrots.  If you are wondering, Amos is perfectly willing to both eat them outright and to pre-clean the dish.  Such a diverse palate my little Fluffernutter has.

I was going to polish the silver today, in anticipation of the visitors in December, since I will not be able to do so after the implantation and prior to the 22nd, when my house will be most full.  However, I failed to accomplish anything other than freak out further over the pacemaker.  Silly Myrtle!

I have 10 days to: polish the silver, do the laundry, give Amos a bath (not until the night before), clean all the windows, wash all the lace curtains, vacuum the servant stairs, make the roasted rutabaga beer cheese soup, make roasted butternut squash and goat cheese shells and cheese, fetch groceries, fetch prescriptions, fill up on gas, water all the plants in the solarium and the hanging baskets in the dining room, remove the fountain pump, clean it, and store it in the basement, and prune back the rose bushes for the winter.

Because I have so little information, specifically, on what it will be like/feel like after the pacemaker implantation, I went hunting on YouTube.  That was a mistake.  A BIG mistake.  For me, at least.

I am worried.  I mean, Friday and Saturday, I had such terrible time with the palpitations, with the erratic heart beats, that I would have given anything to be in the hospital today getting the pacemaker.  I feel so ill and ... so very wrong.

I am worried, though, on many levels.

I worry about the pain.  I worry about this because I have such disproportionate responses to pain.  Take the last biopsy.  To be very, very, very blunt, opening a speculum felt as if the surgeon was tearing my flesh.  Not only did I scream, as I have done before, but the pain was so much worse that I literally tried to get away from her.  It was just awful. What will it be like in the hospital after the surgery?

I also worry about how I will respond to being touched so much and to be so very exposed.  Thin hospital gowns will not be sufficient to quell that trigger.  And my three greatest coping mechanisms will not be available:  Hold Amos; Organize Something; and Have a Fire.  Neither will I be able to: Burn A Candle or Cook Something.  How am I supposed to calm myself down if my arsenal is so very depleted?  Plus, I worry that, should I melt down, I will not have the space to work through that without some "medical" intervention, chiefly a drug to calm me down.  I react so very poorly to medications and am rather weary of dealing with side effects that I am not interested in having drugs shoved down my proverbial throat.  However, I doubt there will be a closet I can squeeze myself into if need be.  For that matter, it looks like I won't be doing much moving at all for a bit. 

Then, well, there is this fear that I will not be a cooperative patient for the cardiologist.  He is a male. I will be sedated and thus not all that cognizant of needing to be ... well ... of remembering that he is trying to help me when it comes time to touching me.  What if I fight him?  I haven't had to face male doctors or technicians in a vulnerable state for a very long time.  He has done so much to help me that I do not wish to do anything to make his job any harder.  I am privileged and very, very, very blessed to have him as my cardiologist.  SIGH.

So, if you haven't noticed yet, I am really, really, really worried about having wires screwed into my heart muscle and having a machine inside me. However, my heart is so wonky at this very moment and I am so short of breath that I wish it were the 25th.

Being so torn is very difficult. I have loathed, for a very long time, just how aware I am of my heart, to always feel it and to oft hear it. I can tell you my heart rate within a very close margin. But with all the erratic function that is happening with greater and greater frequency I am struggling to maintain the same blasé attitude I have as with, say, fainting or falling. This just feels so very wrong. And it terrifies me.

Then ... in the furthest corners of my heart ... there is this abject relief. Relief because folk with dysautonomia all too often hear such things as: "It's all in your mind." "If you wanted to be better you would." "This is all about getting attention." It breaks my heart to read of children battling dysautonomia greeted with such attitudes by family, friends, and medical personnel alike. But so does it hurt me when I hear such things.

"Surely," I think. "Surely a pacemaker will convince the naysayers."

And then I feel ashamed for thinking such a thing, for joining in with the doubters and all those who are so very unkind, not to mention unsupportive.

Sleep is hard to come by, between worry dreams and the wonkiness. I am worried and weary and already ... already missing Amos like crazy.

Silly Myrtle....

Wednesday, November 11, 2015

Read this...

Read this:

You can view and download it here.

Really, read this.

Dr. Yahnke regularly teaches about spiritual care for the wounded and gave me permission to take a paper from one of her presentations and re-set it into a booklet format.  I asked her to let me do so because, to me, her advice to pastors that is summarized at the end is priceless.  And, frankly, helpful to anyone and everyone who has contact with a suffering soul.

For me, reading it caused great longing for pastors to understand what she teaches.  It is hard to choose amongst the good things in her presentation, but I think, if pressed, I would say the most valuable bit has to do with confession and absolution.

Often, those suffering confess the feelings overwhelming them or driving them to despair.  I have personally experienced the unhelpful response that feelings do not need forgiveness. But Dr. Yahnke points out that by confessing those feelings we are really confessing an awareness of doubt and distrust.

But, seriously, do not read my clumsy retelling.
Read the booklet.
I promise that it will be worth your time.

In need of rescue...

So, I just do not do emotions well ... yet ... and had a terrible meltdown in Walmart today.  So terribly overwhelmed.  I tried to shop on the way home from the cardiologist appointment.  At first, I was ... managing.  Then I started shaking and weeping and ended up hiding in a corner after pulling a rack of baked goods in front of me.

I actually called the counselor.  Twice.  After leaving two incoherent messages, I longed for someone to come rescue me, to come lead me out of Walmart and on home to Amos.

I should get a gold medal for getting to the cardiology appointment and another gold medal for being a confident advocate and clear communicator.  The things I wanted are very much in line with the care the cardiologist believes in, but the rub is that it is time for a pacemaker.  SIGH.

I was very excited about his three-prong plan: 1) put in a pacemaker to address the bradycardia from NCS; 2) start blood pressure medication to blunt the high spikes in blood pressure and heart rate (which I cannot take without support for the bradycardia); and then 3) stop the theophylline and get me back on regular asthma medication (including having emergency meds once more).  It is a good plan that I laid the foundation for by first sending him the BP data he asked for and, second, bluntly blurting out that I have such a love/hate relationship with theophylline.

Gosh, even typing this the shakes are starting again and the tears.
Help me!

It is a good plan, especially because he believes the the theophylline is exacerbating the palpitations and my blood pressure is too erratic.  I might even be less fatigued.  I will still faint and still have BP plummets do to my blasted vagus nerve, but I could possibly have a true increase in quality of life.  I want that.

I do not want a machine in my body.
I do not want wiring in my heart.
I do not want something in my chest that has to be examined regularly.
I do not want to have to stay in the hospital for 2 days.
I do not want to have to be unclothed in the hospital.
I do not want to be alone in the hospital.
I do not want to still be so understand about salvation and belief in the hospital.
And I most certainly do not want to be away from Amos for two days.

Oh, I just cannot fathom getting through this, but if I could, I would have it tomorrow.  If I were brave and strong and fearless  ... and unashamed.

But I am not.
Any of those.

Counseling yesterday was rather difficult, but it was also ... distracting.  With the refreshing lack of drama this past week (no dead bodies or wretched doctor appointments), we moved from talking about chronic illness to more about abuse.  I was telling her about sailing lessons that were not so much sailing lessons as further lessons on the depravity of man.  Perhaps it was not coincidental that PTSD had come up before, because as I talked I was right there back in the boat seeing what I wish with my whole being could be unseen and experience the sadly familiar.  I was reliving instead of retelling.  Needless to say, it was not a good moment for me.

Then on the heals of that moment, I connected one of the most hurtful things said to me to ... well ... it doesn't matter. I finally understood the whys and wherefores of the words flung at me which increased the wound of them.

With little time remaining, we ventured onto the topic that drives all else in my life:  shame.  It is not as if we waded in nor am I ready for that, but it is seemingly impossible that I might one day be free of shame.  However, the counselor said something that has me pondering.

She said that shame is different for everyone, to some degree.  And that we would need time to understand my shame.  But she also said that shame can serve a purpose.  One of those purposes can be safety.  If that is the case, then it is doubly hard to move way from shame because of feeling as if moving to a more vulnerable space.

For me, I always think of shame as a negative thing.  In a way, I am ashamed to be ashamed.  And yet my first thought was how Bass and Davies teach in The Courage to Heal that all coping mechanisms that helped you to survive are good in that you did not become a victim to abuse (lost the battle and died).  The key to healing is to recognize the coping mechanisms that can still serve you and those that no longer serve you well.  It was as if I caught this tiny glimpse of the possibility of healing.

Too many thoughts.
Too many memories.
Too many emotions.
Too many bits of difficult news.

Becky, dear woman, seeded my herbs and seasoning stash.   So, my way of dealing with this very long, very difficult day was to cook a bit.  After all, I spent the late evening battling not one, not two, but three blood sugar crashes!  ARGH!!

I found these Pickled Carrots to be just what I wanted.  Perhaps a tiny bit on the sweet side, however, I only tasted them warm.  I am looking forward to having them cold.  I also wonder if the extra sweet is because I did not simmer the marinade enough ... got it hot enough.  That is an afterthought at the moment.  When typing up the recipe, I realized that I did not see the directions to simmer it.  I heated it.  Does the difference matter?????

Totally exhausted and thankful that I am ending my day....

Sunday, November 08, 2015


I have been trying to recover from all the herb work that I have been doing.  I really do enjoy having a raised bed, but I do not enjoy the strain of the labor.

First, I got the sage, thyme, and oregano harvested and the rosemary bushes potted and all brought inside ... fainting along the way.

Of course, that meant that Amos and I needed baths, which meant stripping the bedding, when led to laundry, that really, really, really should have waited.

Saturday, I had to fetch prescriptions, but gave up on the idea of getting groceries, too.  I was still so very tired and yet needed to bundle and hang the herbs I harvested.

I have yet to harvest the rosemary I had planned to dry.  This evening, I am just not sure I will. I had thought to send it out to friends, but ... I don't know. I am so tired!  I did cut off three pieces for my second batch of my 15-Bean Soup, which I tweaked a bit this evening when I made it (including adding the salt that I forgot to put in the recipe when I was typing it up).

It took three trips up the stairs to get everything to the solarium.  Each time I headed back down,  I stopped to admire just how much the broken piece of the hanging basket (over on the far side of the solarium) has grown.  I probably should break off the long bit and create another pot, but I do not have anyone to give it to and I do not need to be creating another pot to winter in the solarium (take outside and then bring inside and then take outside, etc.).

I am pleased with having the raised bed all cleaned out, except for the garlic that is a year old and still not grown very much.  The bed, however, needs more compost manure, peat, and soil.  I can order it from Lowe's and having it loaded into my car, but I am not sure I can get it from the car to the bed.  I would really, really, really like to have it stewing over the winter rather than add it in next Spring.

The soup took what little energy that I managed to get back today, but I am actually getting a bit empty in the basement freezer.  Tomorrow is counseling, and I plan to do nothing but that.  Tuesday, I have to leave at 6:00 IN THE MORNING to go to the cardiologist.  The palpitations are much, much, much better.  I am less scared.  And, oddly, I am wondering if begging for prayer is why I am better.  Despite the expense, I still want to go to the appointment and ask if he will put in an order for monitoring and have me come in the next time it is bad.

Because the grocery shops are right on the way home, I am planning on trying to fetch some things on the way home.  If I am successful, other than a bit of cooking, I plan on doing nothing all the way until next my next appointment on the 17th.

Absolutely nothing.

If I forget, please remind me.

Wednesday, November 04, 2015

In the wilderness...

Even though I still have a long list of ingredients that I am desirous of obtaining, I outgrew the space where I keep my spices and herbs:

[Please ignore the fact that I did not notice the setting on the phone camera had changed.]

I have things falling out of this cabinet, things in with the other baking and cooking ingredients in the regular cupboard, and things in a drawer in the dining room built-ins.  [I still have things in the latter place.]

So, I decided if I am going be the One Who Cooks, then I simply cannot have my corning ware so conveniently located.

This is the rearranged original spice cabinet.

And this is now my Spice Cabinet 2.0.

Since it is above the counter space where I do a lot of prep work, I moved the salts, peppers, Middle Eastern, and Mexican spices over here.  As you can see, I have a wee bit of room for growth.  So, all I need to do is successfully retrain myself as to which spices and herbs are where.  I predict that to be a steep learning curve.  SIGH.

I did find logical places for my corning ware that, although now separated, already make sense to me.  Translate that: I will not "lose" them in my kitchen.

It amazes me that I have six kinds of salt and seven kinds of pepper.  I would like to get better at using them, at finding which fits best with which ingredients.  I also would like a few more peppers.  And I would like to learn to use dried peppers, the way that I have seen on some of my cooking shows.

Just as I have a cheese drawer in my refrigerator (a very, very, very stuffed cheese drawer), I now have a curry paste drawer.  Really, it could be called a paste drawer, because I have the four curry pastes, the tamarind paste, and the tahini in there.

It also amazes me just how many ingredients are needed to cook.  I used my very first wheat flour last night and have not even touched cake flour, self-rising flour, and all the other flours that I do not yet know about or own.  I do not have all that many oils and vinegars and yet I have more than I ever have had in my life.  I have eight sugars, with palm sugar being my latest sugar acquisition.  Those are all real sugars and not sugar substitutes.  Because, you know, I am not into fake sugars or dairies.  I prefer the real, wicked ingredients.

I had a bit of company tonight and we talked food, cooking techniques, cooking shows, impossible topics, and his thesis work, amongst other topics.  During our long conversation, I discovered another way to warm the cockles of my heart:  "What cooking shows do you watch?"  What an incredible kind thing to ask of me.  I also got to hear about his beloved, my dear friend Mary, his cherubs, and his parish.  I plied him with food and bent his ear all evening.

I whipped up some sautéed purple asparagus to go with the hummus muffin as an appetizer for him. The appetizer, though, was not so much for him as it was for me ... for me to have another confirmation that the hummus muffins, though weird sounding, are actually tasty, because I do not believe that I am a good judge of anything these days. I like to read psalms for people before they go, especially someone who probably doesn't have the Bible read much to him since he is usually reading the Bible to others. I picked two and he chose one: 77, 27, and 4. I thought I was reading for him, but as I was reading it occurred to me that I was serving the appetizer all over, that I was actually reading for me. SIGH.

I do.
Despite the confusion I do.
I do so long to simply hear the Word of God.

The fun part was that when my company arrived, he used the doorbell that had been installed just a few hours earlier!  Of course, he pointed out that he know that I knew someone was at the door because of the vocalizations of my little Fluffernutter.  True.  But were I upstairs neither of us would have known he was at the door.  I am hoping a doorbell will wake me up, too.  I look upon it as a bit of a safety feature.  Maybe I am just reaching though??

This is the simple light fixture that Electrician Man used to replace the bare bulb on the back porch.  [Feel free to admire the lovely painting job that Firewood Man did for me.]

The other task Electrician Man accomplished today was so totally a want, though I am searching for ways to call it a need:  He installed a GFIC outlet on the airing porch.  Wouldn't it be fun to string some white twinkle lights up there some time?  I can now hang out there for eons with my electronics.  And, come to think of it, I can bring my small space heater up there in the dead of winter so enjoy some fresh air.  Isn't year long fresh air a need?

I will say that, having paid for painting I could have done myself, if push came to shove, and paying for the electrical work, I ended up spending every single penny (or almost) that I have saved this year being penurious with my utilities. So, rather than coming out ahead in budgeting, I won't break the bank with the electrical work.  I wanted to come out ahead.  I wanted to be the lean, mean, financial machine.  I am not, though. I am very, very, very good at times, but I still do a bit of therapeutic shopping, such as buying contraband from the specialty grocery store, and, I will admit, salivating over a stand mixer.  For that matter, I did not need a jean jacket, even though I am making good use of it and it is not a hoodie.  And, frankly, Amos did not actually need the Beaver Baby that I bought him a couple of months ago.  I am a financial hypocrite.  SIGH.

I did write the checks for Firewood Man and Electrician Man with a checkbook I have had for 30 years.  [Leather is a good investment.]  It is strange how I have so many new things in my life—more than a poor person should probably have—and yet have so very many things, including clothes, that are 20-30 years old.   And older ... if you consider how much of my grandmother's household things I still utilize.

Anyway, as my company left to get back to his studies, he asked if he could give me a hug.  I am in dire need of one, but I couldn't accept it.  I'd probably scream and dive behind the couch because I need distance.  I wanted so badly to say, "Yes!" because, I think, really he would only have been passing on a hug from Mary.  Instead, I tried to ask him, being a pastor and all, for what I want so desperately to hear:  that I am forgiven.  Not absolution, mind you, but to hear that the possibility for forgiveness still exists despite what I think and feel and worry about faith and belief.  I could barely keep from weeping trying to fumble through finding a way to ask such a thing and broke down and started wailing after he left, the gut-wrenching, soul-tearing sobbing that I did after my father died.

Silly, silly, silly Myrtle.

The wailing is finished, but the weeping remains.
The tremors still wrack my body.
And my soul feels frighteningly fragile.

Silly, silly, silly Myrtle.

I have been trying to write the longer story about what I started reading, but I keep failing.  The short version is that I stumbled upon a podcast interview of Micheal Card in which I learned: 1) he has authored 27 books (he said he writes books that only 10 folk usually want to read) and 2) the most favorite book of his own pen is A Sacred Sorrow.

I bought it.
I am reading it.
I long to have someone with whom to share my thought about it.

Personally, I believe the book to be a good use of Amazon promotional credits.  It is on his theme of Lament as Worship.  Lament does not lead one to worship, but it is worship.  For when we lament, we recognize our state and acknowledge our need for God, oft speaking of what He has done, is doing, and will do for us.

There is much that I wish to write about the book already, though I am not finished.  Only sometimes I wonder if it is even possible to capture the glimpses of ... God ... that have flickered across its pages.

So many of us simply remain, willingly and willfully abandoned in this wilderness.  We do not know where we are.  We do not know where we are going.  We even lack the language to describe our desolate place in this frustratingly verdant place.  Bound by the personal sorrows and hurts we leave outside the door on a thousand Sundays, we are left to languish while those around us drink from a fountain that, to our eyes, looks dry.  We are slaves to what we do not know.  And muted by what we find ourselves unable to speak.  We are thirsty.  We are word-less and way-less. Our best hope of finding our way back to true worship lies along the pathway of lament, a path that promises to provide the only route through the green dessert. If indeed we are lost, we must push forward together and take the land, refusing any longer to live as strangers there.

...Our failure to lament also cuts us off from each other. If you and I are to know one another in a deep way, we must not only share our hurts, anger, and disappointments with each other (which we often do), we must also lament them together before the God who hears and is moved by our tears.  Only then does our sharing become truly redemptive in character.  The degree to which I am willing to enter into the suffering of another person reveals the level of my commitment and love for them. If I am not interested in your hurts, I am not really interested in you. Neither am I willing to suffer to know you nor to be known by you. Jesus' perfect example makes these truths come alive in our hearts. He is the One who suffered to know us, who then suffered for us on the cross. In all this, He revealed the hesed of His father."

My dear friend Bettina went to a Bible study on the Psalms a while ago.  One study was on Psalm 6, a lament:

O LORD, do not rebuke me in Thine anger,
Nor chasten me in Thy wrath.
Be gracious to me, O LORD, for I am pining away;
Heal me, O LORD, for my bones are dismayed.
And my soul is greatly dismayed;
But Thou, O LORD--how long?

Return, O LORD, rescue my soul;
Save me because of Thy lovingkindness.
For there is no mention of Thee in death;
In Sheol who will give Thee thanks?

I am weary with my sighing;
Every night I make my bed swim,
I dissolve my couch with my tears.
My eye has wasted away with grief;
It has become old because of all my adversaries.

Depart from me, all you who do iniquity,
For the LORD has heard the voice of my weeping.
The LORD has heard my supplication,
The LORD receives my prayer.
All my enemies will be ashamed and greatly dismayed;
They shall turn back, they will suddenly be ashamed.

~Psalm 6 (NASB 1977)

I had forgotten, until she reminded me, that afterwards, Becky penned her own lament:

LORD, where are you?
  I do not hear you.
You are everywhere,
  Yet my soul knows silence.
Countless are my advarsaries,
  Their numbers are untold.
Great and mighty is the Lord, my God.
  He has caused the earth's bounty.

I feel abandoned,
  Left alone to myself.
All I accomplish is laid to waste,
  My work is a pile of rubbish.
I am made to wait.
  How long, Lord, how long?
I am weary and tired.
  I know no rest.
On and on I trod,
  And find myself in circles.
Is this all you have for me?
  Is there no more?

I know you have a plan,
  There is still good here.
Hear my cry, Lord God,
  Give me the desires of my heart.
For you always I long for,
  You are my hiding place.
You bring me to you,
  You are my rest.

Would that it were I had the skill to pen my own.  
Such beauty here.  
Such faith.

The book explores lament as worship, first by introducing the concept, then looking at lament in the lives of Job, David, Jeremiah, and Jesus.  Michael Card concludes with the lost language of lament.  As much as I long to get to that last chapter, I have been lingering in Part Two, which is about Job.  Such an interesting perspective.

At times, I see in his writings the theology that differs from the Christian Book of Concord, but woven throughout them is also that which is solidity Gospel.  A prime example being the emphatic stance that worship is not what we do for God, but what God does for us.

I am enjoying seeing a further exploration of hesed and long to dive back into the waters of Micheal Card's commentaries on the gospels.  I am too much of a literary oaf to properly explain, but the lament of our souls, Michael Card writes, has its bases in Genesis and what took place in the garden.  Lament, at its heart, is two-fold: a longing for the presence of God (because we were created to be with Him) and a perceived lack of hesed (because that is essence of our triune God).  The Deceiver, then, broke the fellowship Adam and Eve had with their creator.  To this day, the Deceiver works to do the same.  We stand and look around at our lives, at our world, and we protest what we see and experience to God as being the opposite of the promise of hesed.  Failing, Michael Card tells us, to understand that suffering is the fullness of hesed, for the greatest hesed our Father has to offer us is the cross.

I wrote a while ago that Michael Card believes in the perfection of Jesus. In the perfection of every word that He spoke and the perfection of every time He remained silent.  He believes in the perfection of every word of the Bible and that there is no mistake in the words God chose to have penned for His creation.  Ponder, then, this:  What does God say to Pharaoh?  Not merely "let My people go."  God doesn't stop there.  He finishes, "let my people go so that they may worship me in the wilderness." the wilderness

Often, it seems, the wilderness is relegated to the Israelites 40-year journey and Jesus' 40-day sojourn.  But the wilderness began with the first bite of fruit and continues to this day.  David lived in the wilderness.  All who follow Christ do, too.  But it is there, in the wilderness, where we are joined with God and experience His hesed.

This might make no sense, but in a way it seems that to be lost in the wilderness is actually to be found.

I think of that first bite.  It is simple and clear.  But Micheal Card points out that the fall of mankind is more than a bite of fruit:

...But it was not simply the bite itself that caused the Fall and gave birth to the first groaning of lament from both creature and creation.  The bite was only a consequent act of disbelief.  It was the denial and doubting of God's hesed that led to the dis-belief that caused the two prodigals to be driven into the wilderness of His absence, never to return.  It was bound up in the mis-belief that God was only the sum of His gifts and no more.  All this flowing from the stubborn sin of un-belief.

As the two outcasts made their stumbling way out the garden, the hesed of God caused an innocent animal to be sacrificed to make garments to cover the nakedness of the first couple, so they would know they were naked.  By such sacrifices, their sins would be covered until the time when they ould be washed away by a final torrential wave of hesed that would break down the hillside of Golgotha, as One who was Himself the Presence of God would cry out in lament.

The Presence of that had always been (and sadly would have always been) palpable and immediate was altered, seemingly broken, and lament became the language of Adam and Eve, of you and me, and indeed of all creation (see Romans 8:22).

Hesed disbelieved.
     Presence seemingly broken.

The lamentable journey began through Adam for all mankind.  But the heartbreaking sorry of the three (Adam, Eve, and God) was not and could never be beyond His perfect intention.  It was a sovereign sorrow that fell upon the world, a wordless sorrow beyond our knowing.  And as His loving wisdom does with all things, even and especially with our sin, God would redeem their disobedience and sorrow, transforming it by means of His hesed into a pathway back to the loving-kindness of His Presence.

It was a shadowy path that began outside the garden.  It meanders through all our lives, inevitably leading us through the darkest valleys of our fallen experience.  But we must never forget that it is a path, that it is going somewhere.  There is a final destination somewhere outside the gates of a city....

Our journeys of lament are going somewhere....

Tuesday, November 03, 2015

Unexpected blessing...

I want to write more about this day, but it is already extremely late and I am exhausted, so I will write just the last best part:  I made hummus muffins!

I found the idea of hummus muffins rather intriguing and set out to try them tonight.  These Spicy Humus Muffins are far better than I had even hoped.  They are crusty on the outside and soft and fluffy on the inside.  I did tweak them a bit, but clearly I did no harm to the recipe.

The hummus I used for the recipe is the Lemon Basil Humus I learned to make this week.  Yes, I am at the moment, a bit obsessed with hummus and chickpeas as a way of distracting myself from other happenings in my life.  I even found a recipe for roasted chickpeas that I am also tempted to try, although those sound less tasty than the idea of hummus muffins.

These are savory and BLOODY FANTASTIC and pretty much everyone should race out, buy some chickpeas and the other ingredients and make them post haste!

This is actually the first batch of hummus I made that was a little too strongly flavored, but you can see that it is still smooth and creamy.  I ended up on YouTube looking for hummus help and combined a recipe from there with the one I had tried to get the end result that was subtle and flavorful and exactly what I desired.

I was a bit reluctant to use the last of my good batch of hummus for the hummus muffins, but I might possibly now have four more cans of chickpeas in my cupboard.  Really, I should have no running-out-of-hummus angst.

Today, among other things, was filled with three separate bouts of nausea.  If I do not have refills of Zofran until the new GP in late January, life is going to get rather difficult rather soon.  SIGH.

I would like to note, at least, on this abbreviated entry, that the hummus muffins are an example of one of the unexpected blessings of life with dysautonomia. Yes, I just actually typed that there can be blessing in this life of suffering, this life of wretchedness.

You see, if I did not have such terrible troubles with gastroparesis and digesting processed food, needing to get away from preservatives and other unpronounceable ingredients as much as possible, I would never have dared to become a person who makes food from scratch.  And I have become that person.  Yes, I have a very long way to go as One Who Cooks, and I do honestly doubt that I can become a bread maker, but the absolute success of the hummus recipes filled me with unalloyed joy this evening.  I was proud of what I accomplished and am deeply thankful for the culinary path dysautnomia set me upon.

I do, somehow, have need a few more mason jars.  I half despair of finding myself driven out of house and home by all the ingredients I am accumulating.  And I most fervently desire a stand mixer so that I can explore recipes that take more mixing strength than I have to give.  But, despite my bodily misery, I am a woman who, now, can make most impressive, savory, and rather intriguing hummus muffins!

Monday, November 02, 2015


I was fired as a patient by the replacement GP today.

Yes, I am slated to start with a new one next year, but I need my maintenance medications prescribed (refilled) until then.  SIGH.

My BP was 150/86 and my heart rate was 115.  Really, all things considered, given that I was worried about why she did not refill the benzonatate and the Zofran at the end of last month, those vitals are pretty good for a gal with dysautonomia.  The GP's stance, however, was that I clearly need to be under the care of a psychiatrist and that she could not treat me.  I was amazingly calm and asked her if she knew about dysautonomia or NCS.  She declined to answer.  She repeated there was no reason for me to be on either of those medications.  I explained about my vagus nerve and the daily nausea and especially the problems when stool presses against the nerve.  I also explained about how asthma drugs trigger a dangerously high BP and heart rate in me so I depend on medications that help stop the cough variant asthma from starting, such as singular and benzonatate.  Singular is just fine to her, but not benzonatate.  I pointed out that I have taken it for at least 8 years, but really the attempt at conversation was doomed from the beginning.

Sadly, the Celebrex needs renewing, too.  I received no answer about that medication and did ask my pharmacist to send the refill request over to see what happens.  SIGH.

The nurse who came in afterwards whispered to me that a lot of my old GP's patients have also been fired.  For example, some of them are on Ambien which this GP will not prescribe because it is "evil."  She also said that my last visit where I brought the information and testing from the integrative medicine specialist was problematic because the GP thinks that doctor is a quack.  I am not the biggest fan of alternative medicine, but the integrative medicine specialist got board certified for it and, thus, is actually double board certified.  She did not just hang out a shingle on a whim, but rather went back to medical school!

It does help to know that the GP still has not read my records or the letter my old GP left for her and to know that I am not the only one in this position.  However, it still was a blow to me.  Having uncertainty in three medications that significantly impact my quality of life is stressful.  And, given that I fainted from the stress of a close NASCAR race last week, stress is not my best friend.

My immediate response was to drive directly to the fancy grocery store and buy not one, but two rounds of the asiago sourdough bread.  I also bought a short length of summer sausage and two new cooking ingredients:  vanilla paste and Mexican oregano.

After talking with Becky and stopping at a gas station to tend to my personal needs, I decided I would leverage my upsettedness into my long-time goal of going to a restaurant by myself.  I had chosen one last month, determined to try before October ended.  Alas, I failed at that goal. But I went today.

It was a Thai/Burmese hole-in-the-wall restaurant.  The thing about that type of place is that all the other patrons knew each other and were talking across the single aisle to each other. I felt a bit more lonely even than I anticipated.  However, I did bring my Kindle.

The food was okay, but not stellar.  The samosas were good and were homemade, however they were cold inside which means they were re-heated.  I figure my reheating at home for my leftovers should be a bit lengthy.  Maybe in foil.  Or maybe microwaved to get the center and then in an oven to crisp them back up. I have two leftovers.

And spring rolls
And two others containers of main dishes.
Becky's entire family could feast on my leftovers.

Next time, I think I shall save and save and save and treat myself to fine dining, such as that spectacular steak at Baker's Street.  I did learn, however, that I can survive eating out on my own.  So ... the past two years of asking folk to go out to eat with me, receiving a "yeah, sure" in reply, but never actually going no longer matters.  Just as I do most everything else by myself, I can eat out by myself.  When, you know, money comes falling from the sky.

This is the inside of the leaning evergreen that Firewood Man cut down for me ... after much haranguing.  He did so whilst I was sleeping on Sunday.  He also caulked the seams of all my gutters, having brought over a ginormous ladder.  That means I will no longer have icy spots on my sidewalks from the drips.

The inside of the tree is rotted. I stuck my finger in there but could not reach the bottom of the hole.  The other holes are also deep.  I am very, very, very glad the tree is down, even though I am, on principal, against cutting down trees.  This one was leaning at about a 20 degree angle toward my neighbor's garage.  Yes, I was rather concerned about an insurance claim against me, especially since there have been several tree-downing storms in Fort Wayne since I have moved here.

Amos is not really loving the stump that was left.  Rather than cut it off at the ground, I wanted a stump to see if I might could make it into a planter.  I am undecided, still, about whether or not I desire the stump gone.  Amos is rather firm on the matter and is refusing to enter that portion of the yard.

We are both wimps in our own ways.

I have been in a panic thinking about life with one or more of those three medications, only I came to realize that the world would not come to an end for me.  I will either endure gracefully or ungracefully, but I will not die ... at least from pain and nausea.  If the lack of benzonatate (I plan on cutting my remaining doses in half since they are two pills at once) does land me in the ER, then hopefully they will know how to stop the asthma without causing a heart attack or stroke with asthma meds.  I do plan to ask the cardiologist on Monday to write me a letter explaining how dysautonomia exaggerates responses in my body, such as with B2 agonists (asthma emergency treatment drugs) to give to emergency personnel.  That's all I can do.  Just endure.

Have I matured?
Or given up?
The jury's still out on that one.

Sunday, November 01, 2015

Flip-flops and fluttering...

I have wanted to write about the doctor's appointment Friday before last, but I am finding it difficult to do so.  Just as I am finding it difficult to ... well ... have it be over.  It is not.  Not yet over.  SIGH.

It was nothing short of traumatic for me, but also, I believe, for my doctor.  She apologized and asked for my forgiveness.  She believes she harmed me, not in her care but in having me go through the exam and testing.  I absolutely understand her reasoning that if she does not rule out alternative reasons for the bleeding at least every two years, she cannot know for certain that nothing has changed for me.  She does the biopsy.  I get the hormones.

For one, the pain this time was exponentially worse.  I can tell myself nine ways to Sunday that it is surly my nerves, but this time I found myself instinctively trying to get away from the surgeon.  I very nearly fell off the table.  Because I do not like to have others witness my weakness, there was no nurse in the room, so the doctor had to stop what she was doing and grab me.  All in all, it was a particularly bad moment for us both.

Afterwards, I also instinctively tried to ... hide.  I was not all that lucid and, as my doctor later told me, was whiter than the sheet across my legs.  Working very, very, very hard not to come near me, she whipped over a drawer and started pulling out gowns and sheets.  She used them to essentially swaddle me, until I was eventually wrapped up in fabric.  Shaking, weeping, hurting, and trying very, very, very hard to not be in that moment.

The rub is that since the testing was done, I will need to live with the results.  Last time, I had to repeat the process.  I am hoping that the results are clear this time.  Visibly upset for me and over the situation, my doctor said that she is open to letting this be the last time.  To just try and treat me via assumption.

I see her, both a surgeon and OB/GYN, because we have had this on-going conversation on repairing the damage from my past abuse that makes things difficult for me.  It is a catch-22.  There is no guaranteed the surgery will work and there is the very real possibility that my nerves might be disturbed beyond anything pain medicine can address.  Plus, I do very poorly with anesthesia.  Sometimes, at home, I have such trouble that I am ready to pick up the phone and beg her to operate. Thinking about what happened in the room on the 23rd, I cannot see how having surgery would even be possible.

My counselor then and at our next season, talked with me about PTSD and how the trauma of that day is colored and formed by my PTSD.  We talked, again, about how I have failed to respect my PTSD and to care for me.  I am oft hyper-vigilant because of the PTSD (and can come across as not paying attention to whom I am with because of where my attention truly lies), but I have not been vigilant in my care.  Yes, that is in part because family and friends have also not really respected the wound of PTSD or encouraged/supported me in being vigilant in my care.  But it is also because I want not to have PTSD.  I want not to be the traumatized mass of human misery perched on an exam table but lost to the world.

Too, I have wanted to write about how sexual abuse colors and hinders medical care when it comes to the private parts of bodies.  Only sometimes I think that no matter what I write I will fail to do the topic justice.  My words will fall short.  It does so because of the assumptions medical personnel make when they see the trauma still playing out in your body.  And, these days, anything physical is written off as mental.  SIGH.

But the main reason that I have not written, that I have been so silent here, when I most fervently do not wish to have gaps in my online rememberer, is that I am having terrible problems with palpitations.  To me, frightening problems with palpitations.

For a long while now, I have battled the hammering in my chest and the thundering in my ears.  I have endured the wild swings of heart rate, especially upon the transition from lying in bed for hours and standing.  My heart rate can quadruple.  I oft faint.  For ... maybe 9 months or so ... the fact that I have palpitations whenever I roll over in bed, ginormous thudding in my chest, is the chief obstacle to  getting enough sleep.  It is very difficult to sleep when it feels like a stampede of elephants is occurring in your chest.

Starting this summer, I had new palpitations:  flip-flopping and fluttering.  The first feels like your stomach does when on a swing and you've gone a bit high.  The latter feels as if my heart is made of butterfly wings instead of a muscle.  Or something that is likened to a fluttering motion in your chest.

Thursday night, I had palpitations start up when I was reading.  There I was, peaceful and resting, and WHAM!  It was very disconcerting to me, for it was the most I had had at one particular time.  Friday morning, they started, the flip-flopping and fluttering, and did not end for over an hour.  I was rather scared and very much wanted to go to the ER so that if I was to have a stroke or a heart attack, I might survive.

Only what would happen to Amos???  If I show up with an erratic heartbeat, even if just the malfunction of my autonomic nervous system, I am most certain to be kept over night for observation.  I am fairly certain that is a likely assumption.  And I have no plan ... no place ... for Amos to go for temporary or emergency care.  Oh, my, did I want some doctors around me that morning.

I finally fell back asleep and, when I awoke, I called the cardiologist for an appointment and then called two friends for prayer.  Yes, this confused-by-faith person very much wants prayers.

The scheduler wanted to know why I wanted to see the cardiologist.  When I explained, she shunted me over to a nurse.  The nurse squeezed me into the schedule November 10th.  Even though I have many days to wait to hear what I want to hear (you are not going to have a stroke or heart attack from this), I felt immense relief just having an appointment.  I am 99.99% sure that this, too, is part and parcel to life with dysautnomia in my body.  However, I remain rather worried.

Even as I type this ... I am distracted by what is going on in my chest.  It is annoying and fearful.  And it has been incredibly difficult for me to navigate.  The physicality of dysautonomia, the pain and sensations I have in my body, is the worst aspect of the illness for me.

Not helping in my overall distress this evening is the fact that tomorrow I see the replacement GP who is, currently, restricting my access to two maintenance drugs:  Zofran (nausea) and benzonatate (asthma).  Neither of those are really optional for me, especially the latter. I simply do not understand why she has not read my medical records and why she is changing my treatment protocol when my health has not improved.  I do not look forward to trying to advocate for the renewal of both prescriptions.  If I could do so without consequence to my care, I would ask her to explain to me what dysautnomia is and why B2 agonists (asthma drugs) are no longer safe to take.  I do not believe she knows or ... or cares.  SIGH.

I also do not have enough Celebrex to last until my first appointment at the end of January 2016 with the new GP who has dysautonomia patients.  I have to work with this doctor until then.  That or huddle in pain for over two months.  Without Celebrex, my arthritis is so bad that I am do anything.   I can get my other prescriptions from my other doctors, but as a GP, I need those three from her.  If she also ceases the Celebrex, I can go half dose to get through to the new doctor.  But I must have the benzonatate.

My asthma has just not been under control at the reduced dose of theophylline, so I am back at 800mg.  So far, I seem to be tolerating it well.  The reason I wanted to try it again, besides waking up coughing so much, was that my hair is falling out again.  For me, that is a sure sign my thyroid meds are getting off again.  I hoped that, having seemingly become used to the increase in thyroid meds, the conflict with the theophylline would no longer be an issue.  It's been something like 10 days, and I have had nary a theophylline toxicity issue.  Thanks be to God!

If the flip-flopping and fluttering is not going to go away, I need help adjusting to living with feeling so ... wrong.  I have become used to always feeling my heart. In fact, in the rare times when I cannot, I wonder if I am still alive!  But this ... this is felling me.

I need help.
In more ways than one.