My forgetter...

The title for yesterday's post was "Like a kidney..."  This is something I forgot to explain.  The mass being checked looks just like a kidney ... sort of.  I know because I asked to see the screens and the ultrasound. I mean, if I am going to have to wait to learn results and I have to go through so much to be responsible with my body, I want to at least see what's on the screen. It is also one centimeter.

I had a solid, benign tumor removed in the same breast way back in the dark ages.  A scar I mostly ignore, though when I was younger I was certain I was disfigured for life.  Time really does provide perspective ... even if you are certain it will not.  Back then, I was in surgery before I could blink.  So, I am going with "this is nothing" since I am not yet in surgery.  That's my plan and I am sticking with it. What I want to hear is: "You are fine."  What I don't want to hear is: "Let's wait and see."  Wait-and-see means going back sooner than a year.  I'd rather a year.  Maybe two.

I am not brave enough to go back any time soon.  My well of loin girding is nearly empty and it will be mighty hard seeing the male cardiologist on the 12th.  For one, I would bet a case of Dr. Pepper I'll have to have an echo cardiogram again, which has been par for the course since first pursuing the cardio-related symptoms of Dysautonomia.  I will, most definitely, ask to be draped with a towel again, but I have found in the cardio world there are far, far more male techs than female ones.  And a whole lot less understanding of why it is that I cannot bear for a male technician to be the one doing a sonogram of my heart, much less applying sticky doohickies for the EKG I know I will be having.

While a mostly clothed test, I am fairly certain I will have to do another stress test.  I am no longer able to do them physically, so I have to do them chemically.  Chemical stress tests, in my opinion, are pretty much one of the worst experiences I have ever had when it comes to poking and prodding.  The last one had a side effect of intense pain in my legs and an inability to use them for hours, just as if I had been chugging along on a treadmill.  I found that odd, frightening, and truly inconvenient, since I had to find someone to unexpectedly pick me up, take me home,  lug me into my house, and get my car back to my house.  This time, I can be prepared for those things, but the sensations of the chemicals, the response of my heart and my body, and the anxiety sure to blanket the whole experience is just not something I am ready to face.  SIGH.

I need to, though.

I need to understand the changes in my heart and in my blood pressure. It helps me, for example, when I am writhing in pain from gastroparesis to know, to understand, what is happening to my body.  I can talk myself through at least the parts when I am still sensible, telling myself the whys and wherefores of the pain and sensations I am having and that there will be an ending.  At least, thus far, there has been, even if those endings are taking longer and longer and longer to arrive.

I am on my sixth dose of low-dose, liquid Erythromycin ... round three in trying to take that drug for motility assistance.  Of course, it is not a covered Medicare drug, so if my GP can figure out a way to include it with the other drugs I am on without the side effects that have led me to have to stop it twice before, I will need to find another $50 every two weeks to cover it.  It is the only thing that has helped with the gastroparesis at all.  I long with my whole being to be able to take it.  I really do.

Most of the side effects are cardiac related.  So, frankly, since I am going to have that part of my body put through the mill, I wanted to be back on Erythomycin so perhaps the cardiologist might pinpoint where the interaction is or how to make it so that I can take the medicine.

That is a goal.  That and hearing why—hearing in such a way as I can understand—it is that my heart rate will skyrocket, the trembling will start, as well as dizziness, nausea, and chest pain.  If you explain, "Well, Myrtle, your this is doing that when it should be doing this which leads to that."  It helps.  It helps with the fear.  It helps with enduring.  It really and truly helps.

I have found that people can be ... disturbed ... by the fainting.  But, to me, fainting is like burping.  A person burps because there is gas in the stomach, usually an intake of air somehow ... gulping food, using a straw, etc.  I faint because of ... well, I have already explained it a gazillion times.  It happens because of a specific reason. There is no fear, no uncertainty.  It is just what I have to face.  Granted, I sometimes fail rather spectacularly at facing it, but I understand it.  For three years, I went from doctor to doctor to doctor not knowing and mostly being treated like I was just a crazy person, with all those normal tests.  I am not crazy.  I have Dysautonomia.  My autonomic process of increasing heart rate and blood pressure to compensate for when I sit up or stand up and gravity pulls blood away from my heart is broken.  I faint.  My fainting, in that sense, is normal.

So are many, many things about my body and my mind and my thoughts and my feelings and my responses.  They are normal for what has happened.  I am trying, not merely to grasp that, but to live it.  To stop punishing myself for things that are what they are.  Like needing a towel covering when doing ultrasounds on my body.

Sunday, my visitors talked with me about faith, about my struggles.  They talked in such a way as I could hear that those struggles are normal and okay.  That has been the greatest gift of my Good Shepherd, sending Mary and this couple, to speak in such a way as I can understand that struggles are not a failure of faith, but rather evidence of faith.

Oh, how I understand the father's cry in Mark 9, the cry I end many of my posts with:  Lord, I believe.  Help my unbelief!  I was reading the whole of Mark 9, not just verse 24, and was struck by a parallel with regard to my own struggles.  The disciples asked why it was that they could not help the boy, drive out the demon.  Jesus answered, that it was a kind that can only come out by prayer.

I think that faith is like that.  I think that wanting to believe easier, to be better, to not doubt, to struggle less is something that really only can come through prayer.  By this I do not mean by praying hard enough or long enough.  No, I think that it can only come by letting our Triune God work through the means of Grace as He answers our prayers. The end of my struggles may not come this side of the vale.  I am sort of, slightly, just maybe getting to where I can accept that without feeling the failure, without feeling despair.

What I do know, unequivocally, is that healing lies in receiving the Living Word and Christ's body and blood into my body.  What I am starting to understand is that spiritual healing does not always mean someone giving thanks and singing praise to God for suffering, giving glory to God for the privilege of enduring pain and sickness and rejoicing in suffering.  Spiritual healing means understanding that weakness is faithful, doubt is faithful, sorrow and fear and agony and weakness are faithful.  For those are things are happening in a body that is faithful because it is a body created by God, redeemed by Christ, and sanctified by the work of the Holy Spirit, a body's whose faith is that of Christ's and His is perfect, sufficient, and complete.

Another cry I end my posts with is: I am Yours, Lord.  Save me!  It is from Psalm 119.  I love reading through that psalm from beginning to end, whether I am doing so with someone else or merely by myself.  There is such a glorious picture of the cycle of faith, certitude and cries for help, all immersed in the fullness of the Law, of the Word of God, of Jesus Christ contained within those 176 verses.  That cry is an interesting juxtaposition with the words of the psalmist just as is the cry of the father in Mark 9.  A declaration of faith right next to a declaration of the need for help in faith.  Confidence right next to doubt, if you will.

I believe.  Help my unbelief. I am Yours.  Save me.

I forget to explain.
I forget appointments.
I forget the Truth.

I need to hear things again and again and again.  Maybe that is one of the reasons I love Psalm 119.  The psalmist was not rushed with words, with the Word.  Repetition fills the psalm, truth and promises said again and again and again in the midst of the realities of this world, in the midst of how sin fills this world and our own lives.  Truth and promises, the Living Word, for the psalmist's prayer.  For yours.  For mine.


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

Like a kidney...

This door is taking forever to clear of paint.  By comparison with the photo I posted before, I can see that I have made progress, but it is difficult to remember that when I look at how far I still have to go.

Today was awful.  Today was better.  Only it was still awful.

Girding my loins, I did the things I thought might help me.  I called the surgeon's office and asked the nurse to call the ultrasound tech and explain how difficult this would be for me.  I brought a pinecone to hold so that I could concentrate on another sensation than that which was happening.  I asked that the ultrasound be done beneath a towel, so that other than the marking and measuring part, I was covered.  Yet I still had nightmares all last night, had two panic attacks before the appointment, was nauseous before, and wept through it and afterwards.  SIGH.

I have decided to try writing about the whys and wherefores of how exams and such are difficult for me, of how receiving the sweet, sweet Gospel is difficult for me, of how myriad things of life are difficult for me.  Below is my first post from www.whatisinmyhead.blogspot.com, where I shall be writing.

...


The Courage to Heal ought to be required reading for all teachers.  All medical personnel.  All clergy.  All emergency personnel.  All mental health professionals.  All judicial system personnel.  All sexual abuse survivors.  All family and friends of survivors of sexual abuse. Well, truly everybody.  Period.

The Courage to Heal, written by Ellen Bass and Laura Davis, first published in 1988, twenty-five years ago, is an outstanding resource for everyone.    Why everyone?  Well, sexual abuse is everywhere.  It is in our homes, our schools, our companies, our parks, our restaurants, our churches, our community activities.  With reported rates of sexual abuse being 1 in 4 females and 1 in 7 males, odds are that someone in every community, store, church, business, school, and sports team has been sexually assaulted.  Yet our nation is plagued by silence on the matter.

Oh, the stories of sexual abuse have become increasing prevalent in the news, sadly.  Of late, sexual assaults by youth—and oft by youth in groups—are the ones reported.  Yet what happens to those who are assaulted is rarely discussed.

I believe that is why we could, in 2013, have a judge dismiss all but a tiny fraction of a rapist's sentence because he believed that the 14 year-old who was raped was complicit.  No matter that the law states that age of consent is 16.  No matter that the girl committed suicide because she could not bear the aftermath of the months of the teacher's abuse.  No matter.  That judge, clearly, is completely and utterly ignorant of the impact sexual abuse has on the survivor.  He failed in upholding the law, but he also failed in his duty to understand the extent of the crime.  There is a reason for the law he dismissed so easily.  An important reason.

Twenty-five years the information in The Courage to Heal has been available, and yet even mental health professionals are not always aware of the impact of sexual abuse or how to help survivors.  Twenty-five years and yet those who are in vocations of caring for others are rarely aware of the impact of sexual abuse or how to help survivors.  Twenty-five years and yet parents and family members are not always aware of the impact of sexual abuse or how to help survivors.  Twenty-five years.  That, in and of itself, is criminal to me.

We know the importance of and teach stop, drop, and roll.  We know the importance of and teach CPR.  We know the importance of and teach having a dedicated driver when drinking with friends. But we do not know about the impact of sexual abuse on the body, the mind, and the emotions or teach about it when every two minutes in America sexual abuse is taking place.  Right now as you are reading this. Right now in your community.

Every. Two. Minutes.

I have written veiled things on my blog.  I have posted veiled things on Facebook, when I have been on there.  I have posted articles of sexual assaults to show how it happens everywhere and posted articles and videos to show its impact.  Yet there is rarely ever any engagement on the topic and, going by site statistics, those posts are rarely read.

My friend, while recently trying to help me through a bad spell, talked to me about the subject of bodies with regard to receiving the gifts of Christ.  While I cannot remember, due to my compromised brain, what  she said, my first thought was Oh, how I wish someone, anyone, had said that to me years and years and years ago!  My second was that I want to write specifically about the impact of sexual abuse rather than hiding my thoughts beneath and between lots of other words.

Nearly two weeks have passed and each time I set out to start writing, a panic attack set in.  I am weak. I am frightened.  And I am most decidedly not brave.  Yet still I want to write.

I thought about writing specifically on my personal blog, but I want to write in such a way so that if ever anyone wanted to learn something about sexual abuse an its impact, then that information via my experience and my reading of The Courage to Heal would be labeled and navigable.  So, I am going to write here.  If for none else then for me.  So, while I may cross post entries, this is where I will be writing the things I wish to say, the things I wish others will learn to that those like me might have a better chance at healing sooner rather than later.

Since picking up this book, I have come far, but I have much, much further to go.  The things I have learned in counseling, I have to re-learn daily.  The truth that has broken through the lies has to be re-told daily.  For the lies persist.

I want to finish by including the first part of the chapter Effects: Recognizing The Damage:

The long-term effects of sexual abuse can be so pervasive that it's sometimes hard to pinpoint exactly how the abuse affect you.  I can permeate everything: your sense of self, intimate relationships, sexuality, parenting, work, even your saint.  As one survivor explained:

"It's like those pictures I remember from Highlights for Children magazine. T he bicycle was hidden in a tree, a banana was growing from someone's ear, and all the people were upside-down.  The caption underneath said, 'What's wrong with this picture?' But so many things were disturbed and out of place, it was often easier to say, 'What's right with this picture!'"

Many survivors have ben too busy surviving to notice the ways they were hurt by the abuse.  But you cannot heal until you acknowledge the impact of the abuse.

Because sexual abuse is just one of many factors that shaped your development, it isn't always possible to isolate its effects from the other influences on your life.  If you have trouble trusting people, is it because you were molested when you were nine, because your mother was an alcoholic, or because you were left alone for hours every day as a small child?  It's the interplay of hundreds of factors that make us who we are today.

The way abuse was handled when you were a child has a lot to do with its subsequent impact.  If a child's disclosure is met with compassion and effective intervention, the healing begins immediately.  But if no one noticed or responded to your pain, you were left feeling abandoned and alone.  If you were blamed, were not believed, or suffered further trauma, the damage was compounded.  And the ways you oped with the abuse may have created further problems.

...

The effects of child abuse can be devastating, but they do not have to be permanent. (The Courage to Heal, Bass and Davis, pp. 3-4)

The effects of child abuse can be devastating, but they do not have to be permanent.
The effects of child abuse can be devastating, but they do not have to be permanent.
The effects of child abuse can be devastating, but they do not have to be permanent.

In thinking about what my friend said about our bodies being how we receive the gifts of Christ, what I believe is important for others to understand is that receiving the sweet, sweet Gospel can be painful and/or difficult for those who have been sexually abused.  That doesn't have to make sense to you.  I hope to help in that area.  But, if nothing else, I hope that you might learn that a child of God might long for the healing of the Living Word and the Lord's Supper and yet flee from it at the same time.  And in learning such you might accept such.  And in accepting such you might help that child of God on his or her journey of healing.

I want to write about topics that still terrify me, that still shame me, because, in my experience, people view sexual abuse as a mental health problem, rather than a whole person problem.  They overlook its effects on the body and on the spirit ... and especially on faith.

I would like to finish by noting that the young girl I mentioned above is a sexual abuse victim.  Bass and Davis are very specific and very careful to delineate between who is a victim and who is a survivor.  If you have died as a consequence of sexual abuse, you are a victim.  Everyone else is a survivor.  If you are alive, you are a survivor, no matter where you with regard to healing.  You are alive.  You are a survivor.  To see someone as a victim, to treat her or him as such, can hurt that person further.  To view yourself as such, can obstruct your own healing.  That is lesson Number One.

I ... I am a survivor.


I am Yours, Lord.  Save me!

Running away from my own mind...

Poor Amos.  He suffers so when FEARSOME BEASTS invade his space.  So defeated was he when writing on his blog today.  I understand, though.  My day was a mixture of ups and downs, too.  In short, I spent most of it running away from my own mind.

As a result, the steak strips are now packaged up in their bags of marinade and waiting in the freezer for when I need to cook my next batch of beef jerky.  I usually make up four at a time.  When I was at the store, I thought of the four bags and mistakenly bought four containers of steak strips, instead of two of them.  So, that means, at the present, eight bags of beef-jerky-in-the-making are lined up along one of my freezer shelves.  I was disappointed, I admit, at the extra expense on this month's grocery budget due to my own mistake.  I shall need to remember to shave $11 off of next month's purchasing.

The packet making came after the soil stew, the rock harvest, the scrubbing and polishing off the paint stripes that I made on my car, and sanding down the side of the closet door in the basement living space.

The latter meant that I actually wore my safety glasses for the very first time ... after getting sawdust in my eyes about a gazillion times as I worked.  My face and clothing and the entire living space was covered with sawdust.  However, the closet door can now be closed.  So, some time between now and January, when someone might be coming to stay there for a month or two or three.  I will note that this photo came after I chopped another inch off of my mullet, which, if you are keeping count, means that I have lopped off four inches of the back of my hair.  Sadly, from the back, it is still looking mighty bad.

The soil stew was for Sandra's raised beds.  Whilst I vowed not to do heavy work anymore, I wanted to finish the project I talked her into funding.  You know, the project where in she had Firewood Man lop off about a 12' x12' section of the GARGANTUAN deck, including this silly boardwalk from the steps to the garage entrance door, paint it the color of the trim on her house, and build raised beds on either side of the side steps.  Of course, whilst there, merely overseeing the work, I ended up turning over all of her 2' x2' stepping stones and lining them all up. I also relocated some to connect the moved side steps to the walkway.  Did you know that it is possible to "roll" square stepping stones?  And, perhaps, a might pile of weeds might have been pulled.  During that project, I bought all the ingredients for her raised beds, but with the mini-heat wave setting in, I waited to the do the mixing, lest I keel over in her yard.  I lined the beds, open to the ground below, with landscaping cloth and then covered it with several inches of pea gravel, to aid with drainage.  On top of the gravel, she now has a nice stew of soil, peat, and compost/manure mixing, with a light topping of mulch to keep things in place.  I also finished laying the final two bags of her mulch.

Afterwards, I began the GREAT ROCK HARVEST.  I managed just two buckets before petering out. It has dawned on me that creating my rock river might be something that takes a lifetime or two.  Still, I am thinking I shall be a crazy old lady who loves gazing upon her rock river—with rock turtles, toads, and frogs in it—every time she awaits her puppy dog's fear-conquering-major-business-production process.  We shall not discuss just what it took to heave the two buckets into the back of my Highlander.

Unfortunately, I was trembling so much when I pulled into the much-beloved-but-rather-miniscule-to-me garage door, I ended up adding rather significant "racing" stripes down the side of my car.  SIGH.  Weary beyond measure, I still, nonetheless, got out some Turtle Wax polish, some very fine steel wool, and some rags.  I only did so because Sandra asked if I might get the paint off.  She was right.  That steel wool did the trick.  It even did the trick on the paint from when someone borrowed my car last month and returned it with a rather impressive application of paint on the front left bumper.  Steel wool, rags, and car polish, however, did nothing for the dent I put in the side of my car.  DEEP, DEEP SIGH.

Amos, poor puppy dog, was traumatized by a possum who had taken up residence on the fence.  The possum utterly and completely ignored Amos' attempts to chase him from his perch.  I almost wondered if I should offer Amos one of my Xanax.

After the possum-fear-calming-down-session, since I was all hot and sweaty and trembling from head to toe, I thought it made perfect sense if I applied the borrowed orbital sander to the door of the basement living space closet that rather ungratefully refused to close once the season of air-conditioning began.  A total, utter, colossal mess later, I am confident that the door will still close once I paint it again.  Okay, I am fairly confident.

Then came the beef jerky preparation.  After that a shower.  And now much snuggling with Amos.

All of this was to try, rather unsuccessfully, to avoid thinking about tomorrow.  My rather talented and kind friend Caryl advised me not to dread this take, but to take advantage of it.  This day is free of whatever may come next.  She also sent me a lovely chicken and lime recipe, but I confess that I rather ... wickedly ... had Honey Nut Chex for breakfast, lunch, and dinner, with Gatorade, beef jerky, and Havarti cheese for a snack.

I am worried.  I am afraid.  I am both of these about enduring the additional testing and what might follow.  After all, I do have rather a poor track record with medical issues and I have a significant family history of these particular tests turning out bad.  Mix those two things together and I ... I only made it through this day by running away from my mind and heart.

My Good Shepherd has promised to care for the morrow for me.  All things will be worked for my good.  And He will be with me.  These things I struggle to hold before me.  Why ... why do the lies and the fear and the doubt so easily rise to obscure and even block the truth and the promises of Christ crucified for me?


Lord, I believe.  Help my unbelief!

What I wanted...

What I wanted, on Friday, was for my GP to tell me that she had seen the report and not to worry, you know ... just a formality.  I mean, it's me, Myrtle, the now ever-anxious one.  Surely ... surely ... you speak words of encouragement.  You DO NOT talk about better treatments available.  SIGH.  Trying to get through until the results of Tuesday's testing—whenever those might be coming—is rather difficult for me.

My sister asked me what my plan was.  I liked that.  Such was helpful.  My plan for last night was to try a new recipe.  I have been hankering for something with lime, which is weird since I am not really a lime person in the least.  But I could not find anything.  Then I started to think about the Archer Farms Raspberry Chipotle Grilling Sauce I found when I went to pick up the Teriyaki Grilling Sauce I use on my homemade beef jerky.  So, I set out to make something up.

Yes, my Raspberry Chipotle Baked Chicken was very, very tasty.  Since I am not a cook, however, I merely eyeballed things.  So the recipe I recorded was to help me remember. I have not a clue how someone else could copy it ... except ... you should.  Since I used an individual baking dish, I was able to dip each and every bite of chicken into the butter melded sauce.  Mmmmmm.....

One of my FB friends—is she still a FB friend if I left FB?—to whom I sent details of my experiment asked me if I could exist without heavy cream.  Nope.  Not. At. All.

My sister offered to treat me to a movie rental on Amazon, but I thought I might delay that treat until Tuesday evening, when distraction will surely be most needed.  So, I made do with a free movie.  It was, absolutely, the worst bad sic-fi movie I have ever seen.  Seriously, as I was watching Retrograde, I could feel my brain cells dying.

I am fairly sure the movie was shot with a budget of no more than $1,000.  And that might be an overly generous estimate.  I mean, how can someone bypass security and write a new sub-routine to lock out others by pushing about six colored buttons on an oval door access pad?  Still, the most egregious moment was, at the closing scene, when the time traveler went further back in the timeline to prevent the woman who helped him solve the problem from ever getting on the ship so she wouldn't die.  Did you get that?  Without her there, much of his success would not have been possible.  Time Travel Rule #1 was broken.

What I wanted, today, was help getting through another day of waiting through the wondering.  I was gifted such in spades.  The seminary couple from last summer helped with my distraction.  They came over after church to make Basil Burgers.  I, being rather strong in my opinions, I decided that we should have Apple Praline Bread for dessert and I decided that Marie should make it all by herself so that she would know how to do so.  I made us Southern Fried Corn, which both Paul and Marie declared absolutely wonderful.  So giddy was I to hear that.  Part way through cooking it, I started to panic and doubt that 1) it would even taste the same, making a full recipe and 2) that they would like it.  I find that I truly savor cooking with others. I feel relaxed and safe and normal. 

Afterwards, I lost at Phase 10.  Last summer, I lived in a Twilight Zone where I won nearly every game we three played.  Tonight, I had no chance.  But Marie and Paul let me trash talk, even as I my hope of winning went down in flames.  Paul won, which was a first for him, given that last summer if I wasn't winning Marie took the prize.  I think, honestly, this was the first time I actually enjoyed losing.  By that I mean, I enjoyed his win even as I worked hard to give the victory to one of my own gender.

When the game was over, my guests talked with me ... lots.  We talked about Tuesday, the Psalter, the Book of Concord, faith, extreme couponing, vicarage, Jesus, making the sign of the cross, baptism, the Lord's Supper, worthiness, Luther, Walther, Clement of Alexandria, and a miss-mash of other things.  While I am fairly sure they were planning on spending the evening at home after visiting with me, Marie and Paul kept me company during the day and through the evening.

Mercy.
A gift of my Good Shepherd.

The best line from tonight's gabfest was "People want Jesus as a Life Coach."  I could write pages and pages and pages about that, but the line is sufficient on its own, if you stop to think about the trend in mainline evangelical Christian publishing, strategic planning, devotional/bible studies, and worship formats.

A good day.

I am fearful, to be honest, of the long day tomorrow.  I do not have a plan for that day. I do not have a plan for distracting me from worrying and thinking and wondering if I will have more bad news, more uncertainty and having to work through dreading future testing, or an ending of worry.

I have chicken.
I have limes.
I want ... need ... a plan.


I am Yours, Lord.  Save me! 

Breathlessness...

Yesterday was brutal.  That is what days where I am out and about are like for me.

I went to my doctor's appointments.  The one with my GP was rather disconcerting.  She had the imaging report sent to her and was very ... somber.  Her nurse, with whom I have a great relationship, told me afterwards that no one in the office wanted to be the one to tell me about the report.  I kept thinking that I must really be a wilting lily to them.  But the doctor was strange ... even talked about "advances in treatment these days."  I thought that call-backs are mostly precautionary.  None of them talked blithe precautionary talk.  SIGH.

I had used my Capital One points for another gift card, this time for groceries.  Since it arrived Wednesday, getting groceries and the glass bead trim for the garage door window were my goals.  I also needed to talk with the pharmacist.

One thing about Medicare I already do not like is the fact that using both Medicare's website and the website for the insurance company, one of my main prescriptions, the one for fainting, showed as a Tier 2 covered drug.  However, only the tablets are covered, not the capsules.  Nowhere is such a restriction noted.  This is a $1,000 difference.  Seriously, $1,000.  Plus, the insurance company said that it is a pre-authorized requirement prescription.  Only that is not noted, either, on either website.  So, how was I supposed to know.  The worst part is that the prescription was run through without Medicare, even though the other seven prescriptions that day were run through properly, so all of these issues were not caught until I got a Medicare summary of my prescriptions for July and noted that the Theophylline was missing.

I would like at least the difference in the cash price and the Medicare price for the capsules refunded, because the pharmacy made the error.  But their stance is that I did not catch the error in time and that the insurance company will not honor the prescription because it was not pre-authorized.  The insurance company insists that I should be refunded the difference, $365.62, by the pharmacy and keeps telling me the website information is correct.  So, the website information is correct but the pharmacy computer kicks out a denial.  No one wants to refund the difference nor can I get a back-dated authorization.  So, going forward, I could conceivably get the medication–in table form—for a mere $8.

My point to all of this is that someone who is disabled, in part, cognitively, is supposed to be able to navigate this mess AND catch other people's errors, when she makes errors of her own every single day.  I have found that there is little assistance out there for those who are cognitively challenged, single, and alone.  And, as I have noted before, there are very, very few accommodations for folk who are physically disabled out and about in the real world.  Like the post office, for example.  No handicapped service window.  No place to sit as you wait.  Only one of the four windows even operated.  Primarily, there are not enough handicapped parking spaces, and rarely are they actually close.  Chiefly, few places have automatic doors.  Oh, how I need those automatic doors.  For one, to not have to figure out if the door is a push or pull door.  For the other, to actually get through the door.

My errands were completed, but it meant that I was up and about for five hours.  By the second hour, I was struggling to catch my breath the whole time.  Huffing and puffing, shaking, foggy brained, and exhausted.  That was me trying to finish up with the grocery shopping.

I did manage to remember to get fresh corn, so I tried a new recipe:  Southern Fried Corn.  I did have to message a friend about what corn milk was, but other than that little bit of confusion with the recipe, I ended up with tastiness sublime.  I will say that cutting corn off a cob is hard work ... very hard work.  The result, though, was worth the culinary labor.

At the GP's office, the staff were talking with me about electric wheelchairs/scooters.  One woman said that it is important that I not wait too late.  I am so conflicted about that.  For me, being single, I would have to have a lightweight version.  Period.  End of discussion.  For those, in either category, I have not found something for less than $2,500.  And neither of the two best options are covered by Medicare.  I could get some really heavy one, but then I would need a lift-gate and a van or something like that.  The scooter version is probably the best option, being just 35 lbs and most likely less if I can pull out the lithium ion batteries before putting it in the Highlander.  But it is ... rather dweeby.

I know ... dweebiness shouldn't matter.

I was short of breath right up until the time I crawled into bed.  My heart never settled back down.  I was trembling and exhausted and moved like a 94-year-old.  Yet I wonder if ... well ... sometimes I wonder if I am not trying hard enough, fighting hard enough.  Even as I scrapped more on the garage door, I wondered if getting an electric mobility device so that I could get out and about with less effort is needful now or merely a lazy desire.

From the parking lot to the actual exam room at the GP's office is the longest walk I make in my now limited existence.  Just getting to the check-in area on the first floor is an arduous effort, and I find it very difficult to lever myself up out of the chair and head to the elevator.  Once through the entrance door, I must navigate two long halls, neither of which have those running handrails.  Yesterday, I could hear my shuffle steps, each swoosh a condemnation of my own weakness.

Pick up your feel, Myrtle.  
I can't.  
You can if you want.

What is the truth, for me?  For several years, I have had people, on the outside looking in, tell me that I am not taking care of myself, not utilizing assistive devices to save my energy for later, when I will need it most.  One woman said that I was recklessly wasting the life I have left in my legs, in my body. Harsh words.

Then there are those who tell me that I am lazy, that I need to try harder.  Others who say that this is all in my mind, that I am willing myself to be ill.  I know the latter is just plain nuts, but doubt is an insidious tool of our foe ... insidious and effective.  

That's the rub with autoimmune and neurological diseases.  So much of their devastating effects are not measurable by testing employed today.  That is why, in particular, the tilt table test, against which I was heavily discouraged to take because of its dangers, was an absolutely blessing to me.  I had a quantifiable, definitive, rather immediate result.  After that, so much of the problems with my body fell into place.  A dark place, but a place nonetheless.  No more females don't handle stress well talk, no more it's all in your head talk. Although it is ... in my head, meaning my brain and nerves and axions and myelin sheathing!

The doubt and disbelief from medical personnel when you have very real symptoms which cause very real suffering is difficult to take.  I think that's why I wrote to the mother of the young boy diagnosed, finally, with Dysautonomia.  But even though I now know full well the whys and wherefores, most of the world—including the field of medicine—know little of them.  Life is an uphill battle, in both living with body/mind/spirit and the tending to body/mind/spirit.

What I do know is the struggling to catch my breath, racing heart, trembling, and heightened anxiety are new and are most unwelcome to me.  Yes, when I am writhing in agony from my innards malfunctioning, that moment seems the worst.  Yes, when in the throes of a migraine, with its pain from even light and sound, that moment seems the worst.  But, in the clear light of day, struggling to breathe is the absolute worst.  Hands down.  Unequivocally.


I am Yours, Lord.  Save me!

Something else...

The door will tell you how the results from the testing went.

I have to go back to the imaging center on Tuesday.  It is discomforting that the nurse asked if I could come in tomorrow, but I already have two appointments scheduled.  I cannot fathom going back.

I just can't.

The door to the garage is/was in horrible condition paint wise.  Most of the door had huge cracks in the very thick layer of paint on it.  Bits were missing here and there.  I had been dreading scraping it, because unlike the back of the garage, I could not just paint over this again.

I find it interesting that the detail of the molding around the three panels in the door had become completely obscure by paint.  I also find it interesting that those pieces were not coped well, so there is a gap at each inside corner. Of course the old soul in me loves the hand craftsmanship, so I care not that there are gaps.  I have wondered if it would be possible to scrape all of the paint off and just seal the door, so I had a natural wood door.  But that might look odd on a white garage.

The three pieces of 1 x 4 on the inside of the frame (the one on the right was moved at some point so there is a gap up top) are in horrid shape.  I am wondering if I should just go ahead and purchase more wood.  I could have Lowe's cut the pieces to length for me, so all I would need to do is screw them back on.  I am not sure if the outer pieces are 1x3 or not.  They seem sort of small.  The bottom of the left piece is the worse part of all the framing, so those two pieces could be replaced.  But, if the size is such that the wood would need to be ripped on a planer to match back up with the header, I will have to leave them in place.

The window's glass beading is missing, so it is held in place only by rotting caulk.  I texted Firewood Man and asked him if he would miter cut four pieces for me after the next mowing if I bought a piece of glass bead wood.  He said he would.

The bare piece of wood on the bottom threshold is brand new.  The piece there was missing, so when the contractor was here, I asked that he put in that piece.  I have held off painting it until I could paint the door, too.  The raw wood was to be the impetus to scrape, but I have reached that point where laboring about the house needs to end because of its toll on my body.  However, today's truly upsetting news led me to pick up the paint scraper and see what I could do.

I wish I could scrape away the parts of me that have been compromised, apply a liberal coat of bonding primer, and then paint them beautiful again.

SIGH.

I did call my pastor and asked him to read to me.  Knowing me as he does, he chose Psalm 77 for the first of the psalms he read, which made me smile through my tears.  As he read, I thought about how appropriate it was not because it is a favorite of mine, but because of the words and the Word given to me to pray by my Creator, who knows His creation so intimately, so completely.  It is a psalm filled with insensibility and sense, with emotion and logic, with forgetting and remembering.  Truly a Myrtle psalm.

The labels for Psalm 77 on my Praying the Psalter blog are:  Anger, Be Gracious, Compassion, Creation, Cry Out, Deeds of the Lord, Forgotten,Lovingkindness, Promise, Reject, Remember, Thy Way, Trouble.  I know because I went there and then followed each of them, reading through the Psalter by subject.

To be sure, my neighbors must think it odd for me to be outside with my laptop, reading from the screen and muttering at the door as I applied the scraper with great vehemence.

How?
How can I go back there?
And how can I not think about this until Tuesday?



Lord, I am Yours.  Save me!

One kind of loneliness...

[Plot Note:  Hannah is a young woman whose mother was killed by Violet's son, whom she was dating.  Joe is DCI Vera Stanhope's sergeant.]

"Silent Voices" 

Vera

Early in the episode where Joe and Vera are drinking and looking at the case late at night...

Joe:  How old were you when your mom died?
Vera:  What? Where’s this coming from?
Joe:  Oh, nothing. I’m just interested. 

Vera:  Ten. Let me show you something. [Opens closet door and points to carved marks with a grin.]
Joe:  What’s that?
Vera:  [Pointing] Me! Ten. Tenth birthday. [Puts back against the marks excitedly.] Tall, wasn’t I? Tall girl.
Joe:   No, not really. Not for ten.

At the end of the episode...

Joe:   How’d she take it? Hannah?
Vera:  Well, she’s broken now, but she’‘ll mend. There’s a girl whose mother taught her how to live. Don’t see Veronica putting herself back together, though.
Joe:  You didn’t tell us about the conversation you had with her, about Simon’s brother at the reservoir.
Vera:  Oh, just a loose end, just tying it up for me own satisfaction.
Joe: You know, if you had told us that information, maybe I could have put two and two together quicker.
Vera:  Nobody died, Joe. And there’s a girl who’s still got her mom because of you.
Joe:  But it doesn’t feel like that. It feels like there’s a child drowning, and I can’t get there in time.
Vera:  Yeah, I know.
Joe:  Look, I teach my kids everything I know. Everything that’s in me is theirs. Because I want them bigger, better, and smarter than I am. And I can take the sly looks and the teacher’s pet teasing because I want to learn. I want to learn from you. But you gotta give us access.
Vera:  “Tall girl.” That’s what my mom used to call me. “My big tall girl.” Is that what they do then? Lie. Make you feel good. Make you feel special?
Joe:  Yeah.
Vera:  Well, I wasn’t tall then.
Joe:  Well, you aren’t tall now are you?
Vera:  No, but I ... I thought it stopped me growing. You know ... the shock of losing her.


Such exquisitely simple, plain writing on such a complicated existence we broken people live!

In the episode,  I see this middle-aged woman asking a question about parents because she doesn't get it, doesn't understand what parents do for their children.  Consequently, in the role of shepherding her staff, to help them grow and develop in their careers, she doesn't share freely, doesn't understand why that is important.  I see a middle-aged woman who's believed this thing about herself her whole life because, as a child, it was how she made sense of the dissonance between her mother's affectionate pet name for her and how her body turned out.  I see a child deprived of love and attention seek it from all the wrong places, choosing things that are known to be wrong as an adult because of an unwillingness to lose love finally found. I see grief over the loss of a loved one so great that things like eating, sleep, thinking are impossible.  I see a person in authority heap twisted truth upon others as a means to manipulate other, feed his ego, and entrench his own position.

I see whole generations of my family in this episode.  I see myself, my mother, my mother's mother, and my mother's mother's mother.  I see facets of one life carved upon another.  I blogged a bit the other day about the sins of the fathers being visited upon their children. It is absolutely staggering the damage that parents can do to their children, the voices they leave in their children's heads … voices from words spoken and unspoken, even voices from absence.

Anyway, this moment is an prime example of how very lonely I am. I have this … text … that I discover that is so profound and so complex and so simple and want to delve into it with another because that is who I was and who I am still, somewhere deep inside. Only there is no one for me here, now, and no one for me later. No one to "read" with and delve with and wend way through words and thoughts. No one to share conjecture, revelation, wonder.

Just Amos.
Who is sleeping.
And doesn't understand anyway.

Doesn't understand the grief and loss, the longings, the sobering reflection, the absence ... all of it drowning me in this moment.

I am Yours, Lord.  Save me!

A bit of this and that...

I started a new British show: Vera. Set in Northumberlund, in North East England, Vera Stanhope, played by Brenda Blethyn, is the DCI of the local police.  A mix between Inspector Morse and Single-handed, this British detective show is curious in its story-telling, language, and cinematography.

I like that they all call each other love.  Man and woman alike.  Lads and lasses.  Bosses called Ma'am and Governor.  Even with the drinking and shouting, there is a civility I find missing in American culture these days.

Today, Vera helped me do the ironing, catch up on my filing, wash the bedding and get the guest suite back in order, set up an eBlast for my realtor, and work through a mini-clear out of the utility closet.  The bonus of the filing is that I came across the cardiology records I have to take with me to my appointment next month, and I actually read the letter from the Botanical Gardens about the membership my mother bought me.  I have one free adult pass!  So, that means I can take my friend there when she visits in two weeks.

I cannot remember when I saw Wynne last, our lives having taken different paths.  Aside from my family, she is the person in my life who has known me the longest ... some 32 years.  I am thankful that she is visiting.

There is a part of me that wants to ply her with questions about what I was like all those years, beg her to fill in the details of my life, even the larger stories, so that I can know something of it, something of all that I have lost.  However, the other part of me wants very much to have not a single conversation about me, since surely tears would fall.  Instead, I want four days of normal.  Four days of chatting and going out and cooking together.  Wynne is the maker of the wondrous Strawberry Bread.  I think I should introduce her to the Apple Praline Bread!  I would like to find a few new recipes to try while she is here, perhaps even some that are more complicated than I would tackle on my own.

The sad thing is that while I know we spent at least 22 years being close friends, what I remember of Wynne is little:  1) she is about six inches taller in my mind than in real life, so I am also surprised when I see her; 2) she shares my love of chocolate; 3) her favorite color is RED; and 4) she is way smarter than I am.  Close my eyes, and I cannot even picture her.  Concentrate, and not a single moment of those 22 years comes to mind.  The blankness blots out our entire friendship.

It is my hope her time here is marked by better days rather than ones filled with innards misery and wild swings of heart rate and blood pressure.  I pretend that I am ever so much better than I am when others are around. I wish not to be the burden and the bore ... for I want them to return.  I wonder, though, if some part of me will recognize that Wynne knew me then and, thus, no pretending is necessary.

It is a marvel, to me, that with God nothing is hidden, and yet He still sent (and sends) His Son to me, for me.


I am Yours, Lord.  Save me!

My starry night...

I was thinking on having another clear out, as a way of escaping the thoughts about just how ill I was yesterday.  Just how slowly the hours passed.  Just how poor in spirit I was.  And scared. But today is the start of a mini-heat wave during what has otherwise been a most wonderfully cool summer—just like the first summer I moved here—much to my delight.  Where I wanted to tackle was the attic.  The now stinking hot attic.

I was thinking about how I mentioned the Christmas decorations.  I have reduced them down from two  of the largest Rubbermaid storage containers and one of the medium ones to just a large one.  However, even so, I still have not used the majority of the decorations in years.  Living alone and being alone at the holidays, I simply do not see the point.

I was also thinking about the lights, wondering if I could use them to light up the inside of the front porch roof.  It would tickle me to have them there ... my own sort of starry night.  A reminder of that beautiful episode of Doctor Who and the quote about good things and bad things.  Only the practical part of me thought that having them up and using them would result in a higher electricity bill.

Thinking about the starry night and Christmas led me to one of my favorite songs:

I wonder as I wander out under the sky
How Jesus the Saviour did come for to die
For poor on'ry people like you and like I;
I wonder as I wander out under the sky

When Mary birthed Jesus 'twas in a cow's stall
With wise men and farmers and shepherds and all
But high from God's heaven, a star's light did fall
And the promise of ages it then did recall.

If Jesus had wanted for any wee thing
A star in the sky or a bird on the wing
Or all of God's Angels in heaven to sing
He surely could have it, 'cause he was the King

I wonder as I wander out under the sky
How Jesus the Saviour did come for to die
For poor on'ry people like you and like I;
I wonder as I wander out under the sky

                            ~John Jacob Niles

Do you ever look up at the heavens ... gobsmacked ... and wonder how in the world it could actually be that Jesus would want to come into this wretched vale of tears and live amongst us so that He could die a miserable, tortuous death?  For you?  For me?

On the Snippets blog, I have been posting from the Formula Solid Declaration of late, particularly about the natures of Christ.  The last post and the one that came from where I was reading today are particularly poignant for one who struggles so much with her own flesh:

In fulfilling Christ's office, the person does not act and work in, with, through, or according to only one nature. It works in, according to, with, and through both natures. As the Council of Chalcedon expresses it, one nature works in communion with the other what is a property of each. Therefore, Christ is our Mediator, Redeemer, King, High Priest, Head, Shepherd, and so on, not according to one nature only (whether it be the divine or the human), but according to both natures.
~BOC, FSD, VIII, 46-47

That, really, is more of a statement of fact, whereas this bit below is more of a promise.  By this I mean, words that sing within my weak and weary heart:

The divine and the human nature have this personal union with each other in the person of Christ and have the communion resulting from it (in deed and truth).  For this reason, there is attributed to Christ (according to the flesh) what His flesh, according to its nature and essence, cannot be by itself.  Apart from this union, His flesh cannot have these attributes:  His flesh is a truly live-giving food and His blood a truly life-giving drink.  The two hundred Fathers of the Council of Ephesus have testified that Christ's flesh is a life-giving flesh.  Therefore, this man only, and no man besides, either in heaven or on earth, can say with truth, "Where two or three are gathered in My name, there am I among them" (Matthew 18:20).  Also, "And behold, I am with you always, to the end of the age" (Matthew 28:20).

We do not understand these testimonies to mean that only Christ's divinity is present with us in the Christian Church and Congregation, and that such presence does not apply to Christ according to His humanity in no way whatever.  For in that way Peter, Paul, and all the saints in heaven—since divinity, which is everywhere present, dwells in them—would also be with us on earth.  However, the Holy Scriptures say this only about Christ, and no other man.  We hold that by these words the majesty of the man Christ is declared.  Christ as receive this majesty, according to His humanity, at the right hand of God's majesty and power.  So also, according to His receive human nature and with the same, He can be, and also is, present where He wants to be.  He is present especially in His Church and congregation on earth as Mediator, Head, King, and High Priest.  This presence is not a part, or only one half of Him.  Christ's entire person is present, to which both natures along, the divine and the human—not only according to His divinity, but also according to, and with, His received human nature.  He is our Brother, and we are flesh of His flesh and bone of His bone.  He has instituted His Holy Supper for the certain assurance and confirmation of this, so that He will be with us, and dwell, work, and be effective in us also according to that nature from which He has flesh and blood.
~BOC, FSD, VIII, 76-79 (emphasis mine)

THAT is why Jesus did come for to die!

So very difficult to grasp.
So sweet.  Too sweet.
Hope and doubt mingled together as I stare at Christ's body and blood ... for me.

That is my starry night.  The things I wonder as I wander—in spirit if no longer in body.  I downloaded the song playing in the background at the end of the episode of "Vincent and the Doctor."  Not for the words, really—the lyrics are really lyrics of regret and loss—but for the tune.  The tune brings to mind the beauty the writers created in examining artistry and mental illness and all that there is to see in the world God created.


Lord, I believe.  Help my unbelief!

Having a clear out...

I had some distressing words spoken to me yesterday that have been plaguing me, so this afternoon I took myself to the basement for a clear out.  I LOVE that phrase, discovered on As Time Goes By.  [The Brits really do have way better words, at times, for speaking things.]

Anyway, I have primarily written about this on Facebook, but over the past three years, I have been systematically downsizing, organizing, and culling my stuff.  I honestly believe that I am down about 75% from where I started.  It is amazing what one can accumulate over four decades of life.

Downsizing is a process, one that is really accomplished over time.  I would guess that I went through all the spaces of my house at least six times, now, to get where I am.  Things having a place helps me with the memory loss challenges I have.  Giving away things that someone else can use helps me with the smallness of the life I now have.  Taking the time to sort anything that can be recycled helps with the guilt of moving stuff again and again and again.  And letting go of the past helps me face who I am now.  All of that, though, is hard.  Very hard.

The basement, the attic, the linen closet, and the servants' quarters closet (housing my too large, but expensive work clothing) are the areas that still have things left to reduce or organize further.  For one, I have too many towels.  Were the house to flood, I am covered.  At least if the bathroom flooded.  The different sets tell the story of my adult life.  So, each time I take them out to donate, I find myself re-folding them and putting them back on the shelf.  In the attic, where relatively little is left, I have been considering donating all of my Christmas decorations save for the stained glass crèche set.  I simply do not use them.  Putting them up is exhausting.  If not all, at least the lights and the lighted tree for the front yard.  The basement, well, I shall not admit just how many thousands of top-loading sheet protectors and dozens of binders that I still somehow have.  The closet is the hardest.  There is a fortune in there of clothing, as well as my professional career.  I cannot wear any of it, nor do I have some place to do so if they were not too large at this point.  A few things I think could be re-sized for me, but I do not sew, nor do I know someone who would want to do so for me.

In the basement, I tackled the shelves on the back wall, going through all the office supply boxes, my old teaching supplies (I had an idea of who I could finally pass them on to), a box of antique books that had not yet found a place in my home, and the shelves of professional work things.  I ended up with: 1) a bag of books to give to someone who always admire my antique books when he is here; 2) a box of teaching supplies to mail to a friend who is now homeschooling; 3) two professional development books, an 8-gig flash drive, and some art supplies to mail to my sister (the latter for my nephew); 4) a set of large print photos to mail to a friend for her new office walls; and 5) a 7-inch stack of papers and such to be recycled.

It was probably completely un-necessary that I actually sorted the three-inch high stack of top-loading sheet protectors by edge type and weight.

I did find some stray family history papers and put them with all the others.  I didn't even know I had this one packet from my father's side of the family.  His mother had a passel of sisters and his father a brother, but none of their descendants had anything to do with our line of the family ... or we them. I am not sure why.  With my uncle divorced, childless, and deceased, my father's line of the family has narrowed, really, to my sister's children.  But our last name ends with my generation, since my brother has had no children.  The history, the names and dates, are ones I have never found in my amateurish on-line searches.  I am hoping that one of my nephews or my niece might one day be interested in all that I have collected and the generations of photos that I have, but those hopes are slim.  What does family history mean when there is no personal connection? 

Those things fascinate me, but they also make me sorrow.  Ours is a family rife with divorce, alcoholism, drugs, and abuse.  The sins of the fathers are truly visited to the generations following, but more so because of the patterns of behavior and interaction born and bred into the children.  My whole life, nearly, I dreamed and then longed to be a parent. I wanted to raise children in such a way to break that cycle.  But that was not God's plan for me.

I confess that I doubt ... often ... that I could have done so, that I could have been a proper mother to children, that I could have taught them ... given them the gifts of ... love and honor and respect and faith.

I told my friend, who is in the difficult position of having to disappoint one child's hopes for birthday plans because of the impending birth of another child, that she and her husband were already giving her daughter the greatest gift they could ever give:  unconditional love.  They cherish and champion and forgive and love their children.  Those children will have the ineffable strength and safety that comes from knowing that no matter what you have done or not done, achieved or not achieved, learned or not learned, chosen or not chosen, they are loved and wanted.  And they have a home.  She and her husband are not perfect, not by far. But their first language is love, not criticism.  And, well, they are both generous givers of the sweet, sweet Gospel.  Yes, there might be bitter and even lingering disappointment over this one birthday, but over a lifetime will come a wonder from each of their children for what have been given.

How could they not?  After all, this world is becoming ever more selfish, ever more critical, ever more hostile.  My friend and her husband are creating a physical refuge that is a reflection of the refuge we have in Christ.  And, with our foe ever vigilant, refuges are becoming ever more precious.


I am Yours, Lord.  Save me!

Just one moment...

I awoke and fed Amos this morning after just three hours of sleep, but could not fall back to sleep because the writhing had started.  I ended up transitioning to the GREEN chair, where I could more easily curl up any yet have my body supported.  I also turned on the heating pad.

All day, from then on, I have been riding a carousel of misery.

My lower plumbing has not been working for 4 days, which is the first time the slowing of function has happened there.  My stomach slowed (gastroparesis is horrid), and so my abdomen began to swell.  But my blood sugar also began to plummet.  I ate and ate and ate and could not find anything to keep it up, to get it about 70 for hours on end.  That mean I was writhing and battling the shakes, anxiety, nausea, and headaches that comes with falling blood sugar.  Each time I tried to get up, tachycardia set in and its accompanying anxiety and dizziness.  And I have been battling sensitivity to light and sound, as well as constant blurriness in my eyes.  The, all in a rush, the lower plumbing decided to kick in, which means that my blood pressure dropped with movement past a pesky nerve, and so much fainting and nausea ensued.

Poor Amos, he has tried to comfort his wailing, miserable puppy momma, but his attentions usually involve the draping of his self about my person

Just one moment.
I long for just one moment of relief to get through the rest of this round of misery.
Just one.


I am Yours, Lord.  Save me!

Cliffs and forests...

Apparently, middle-aged women crawling beneath a chair is upsetting to some.  SIGH.

Yesterday was worse for me, that I thought.  While I managed to sort of hold at bay the assaults of my mind, at least long enough get through the diagnostic part, I was felled by the moments waiting to hear if I had to do further testing, which I usually do.  I curled up into a ball on the floor, shaking and weeping silently, and then looked for the nearest tight space.

If I were at the surgeon's office, either of her nurses would have simply joined me.  No. Big. Deal. I would have heard about how brave I was and how proud they all were that I had come in and was making responsible decisions for my body despite the battle it is for me to be examined, poked, prodded, stuck, etc.  I would have been applauded for finding a way to help contain my emotions and thoughts.  Even through my tears, I would have felt better and would have managed to get dressed and leave somewhat together.

Apparently, an imaging center is not the place to show weakness.

There was this moment when I knew that if I did not get up, get dressed, and leave, I would no longer have the option of leaving.  I find it interesting, at times, how readily medical personnel are to take the course of action that is easiest for them rather that what is best for the patient.  My father spent his final months in a cycle of sedation to the point of a catatonic state to wild physical, verbal, and emotional outbursts that led to the profound sedation.  I am rather ... confused ... about that time in his life, but I think more folk than I and my brother believe that he was misdiagnosed with Alzheimer's and, instead, was afflicted with frontotemporal dementia.  I do not believe he had the best care possible.  But I also know that it was an impossible situation.  I also know that when one is living with decline it is harder to see the overall fall than for those not there on a day-to-day basis.

I have a video on my phone of my father still coming out of sedation.  It is so upsetting to me that I honestly want to delete it, but I also do not want to lose it.  What I really, really, really want is to have someone sit with me, watch it, and let me talk about how he is and my fears for my future.

But as far as the path of ease, this was most certainly the case the night of the pit bull attack.  From the EMTs to the hospital staff.  I have learned so much, since then, about how trauma affects the brain.  How I was—my collapse, my tears, my tremors—were normal.  NORMAL!  What was happening in my brain and my body should have been expected.  That is what trauma does to a person. But everyone I encountered just ... well ... just kept making remarks about either causing trouble, making more of the matter than need be, needing to grow up, needing to pull myself together, or threatening to restrain and sedate me.

If someone had explained—had explained about the chemicals being released in my brain, had explained the ways we react to trauma and danger,  had told me that it was okay that my body and mind did not yet grasp that I was safe—I would have been better.  Better then and better now.   Instead, I was a bother.  I was someone who was making others' jobs harder for them.  From not being able to walk into the ambulance to not being able to stand in front of the x-ray machine.

All that is to say what happened yesterday was something that did not need a needle, but compassion and patience and words of encouragement.

The crowd of personnel, the whispers, and the suggestion for "consultation" and "something to calm her down" drove me to crawl from my place of safety, to get dressed, and to stumble to my car.  I drove out of the parking lot and felt myself falling off a cliff.  So, I dared call my friend Mary.  I asked her to just talk to me, to tell me about her day or about something tasty she had made.

Mary has told me that she does not do well with unexpected upsettedness, with being a comfort to someone in need.  I think she is nuts in that regard.  She is so utterly perfect at handling unexpected upsettedness.  She talked about her girls and her son growing within her. She talked about her presentation on the morrow.  And she let me drop little tidbits of my fear and shame into the conversation.  To speak them. To get them outside of me to a place where the Gospel could cover them. 

You see, we talked a lot about the presentation, which meant talking about the Word of God, Law and Gospel.  And the Word of God is a refuge for us all. It was for me.

Eventually, the panic subsided.  The lingering sensations tormenting me ended.  The tears dried up.  The shame eased.  All because of the Word of God.  The Word of God came to me because a friend was willing to step outside her comfort zone and talk with me about her life during a time of great distress.

She did not dismiss what was happening or try to fix me or tell me to try harder.
She let me be who I was in that moment.
She let the Holy Spirit do the calming, the sustaining, the healing.

She trusts the Word of God.

My friend Mary is deeply sensitive and keenly aware of the damage burdening consciouses can have.  So, she is oft slow to speak to me on the matters of heart and mind that I raise, but is quick to speak of the Gospel whenever I share something that is inevitably twisted Law.  When I do share my struggles, Mary listens and lets me know that sharing is okay, that thinking is okay, that feeling is okay.  She listens and thinks thinks herself and then shares, eventually, Jesus in some fashion.

And it isn't some sort of Life Application Jesus.

Yes, sometimes the Living Word has very practical guidance for life.  If nothing else, our triune God caused to be penned Proverbs.  But Jesus is the whole of the Living Word; Christ Crucified is the forest, not one particular set of trees or bushes or plants.  He is the water and the soil, the wind and the sun.  He is the mast beneath the trees, the moss and lichen on rocks and bark.  He is the insects and birds and animals.  He is the whole and every single individual aspect.

Thus, our lives in Christ are the whole of Him, of His divinity and His humanity, His eternal life and His early existence.  He is not something to be packaged up and sold or parsed and studied.  Jesus Christ is to be received.

That what are bodies are for ... even this body,  my body.

My body—in vary and sundry ways—is ill and thus the playground and easy fodder for our foe.  Yet Mary helped me thinking about the fact that even before the fall, our bodies were created for fellowship with God.  After the fall, our bodies were still created for such.  And it is through our bodies that we receive Jesus, receive forgiveness, salvation, and eternal life.

I hope she talks on the morrow about some of what we discussed, but no matter what Mary ends up saying on the topic, her audience will receive Jesus, not some outline for success on the topic.

Because my previous studies had not actually arrived, the doctor decided to wait to even read the ones from today.  Who knows how long it will be before I learn if I have to go back.  At this point, given how strongly I reacted yesterday, I am not sure I could bring myself to go back.  I am not that brave.  And, these days, I pick and choose my battles.  So, I am trying not to think about that, about the what if of the day.

Instead, I give thanks that when I was falling, Jesus caught me through ear and mouth and mind of my friend.


Lord, I believe.  Help my unbelief!

Another hard day...

On the morrow (or rather later today), I will have another hard test for me to face. I laughed about it today, though, for a very small spate of time. You see, I was honest with the scheduler about how difficult it would be for me to do. She had to wait until my previous records came in before she could schedule me, and so today she called back to do so.

Scheduler: "How about we just rip that bandaid right off?" 
Myrtle: "Uhm, okay." 
Scheduler: "Good, we will see you tomorrow at 1:00" 
Me:  [Gasp] "Okay."

I did have what I hope to be a good moment, a fruitful moment.  After the third call from the cardiology practice, I decided I should gird my loins and try to make the appointment.  I asked for the woman who was calling for me, but she was at lunch.  I would proffer the loin girding came in my Good Shepherd's perfect timing, because the scheduler I ended up with spent 38 minutes talking with me about the referral, my symptoms, my conditions, and ... my anxieties.  At first, she was thinking to pair me with one doctor, but toward the end, she became very confident that who I needed to be with was a doctor who specializes in electrocardiology and who (it turns out) is rather sought after for his skill with difficult cases.  [Yes, you can snicker at the fact that I am a difficult case before I walk in the door.]  What gave me a wee bit of hope is that she very carefully explained that he very much prefers his patients come in with written notes and questions, so that he can be sure to address their needs in person, rather than afterwards with a nurse on the phone.  He LIKES long missives about this, that, and the other regarding heart feelings, sensations, performance ... and anxieties!  A match made in heaven, eh?

I am fully expecting that, after going through all the same tests I did in 2010 I will end up right back with the bottom line that there is no cure or real treatment for Dysautonomia ... just chasing after things that help the symptoms—in this case cardiac-related ones.  However, since I have a history of heart disease in the family and folk with orthostatic hypotension have a tendency to develop heart disease and the whole tachycardia and being short of breath so much of the time is new (as well as the chest pain that comes and goes I have been actively ignoring), I can see how it is prudent to do all the testing that will mostly likely show it is an autonomic function issue rather than a breakdown of my cardiovascular system on some level. Just in case.

Seeing a male doctor is going to be hard.  Very hard.  However, the scheduler was rather confident we could work things out since I was bold and bald with her about that concern.  It also appears the referral was worded a tad strongly because I only have to wait 3 weeks for an appointment instead of the usual 2-3 months for new patients.  And I am to call if this whole new level of bother with my blood pressure and heart rate and difficulty breathing escalates further so I could be squeezed in somehow.  I am all for waiting, not squeezing.  Waiting means more time for loin girding.

Other than scheduling all the referrals and testing from Friday's appointment in a mere three days, I also managed to remember to finally pick up the new medications that were called in then ... but only because Target's automated system called to remind me that I had forgotten.  I also made a small return—a final, final, final return on the kitchen project—and used that "credit" to buy milk.  I broke down and added some groceries to the cart, despite trying to make it to the end of the month.  I also went ahead and fetched Amos' food, since as near as I can tell I was not going to make it another 10 days with what was left in his bag.

I fainted in the parking lot at my last stop.  A long, hard day.

My sister has been talking about her favorite white chili mix for years and finally sent me several boxes.  I have only had white chili once, and I thought I found it rather tasty.  So, I tried to make it tonight, but I would most definitely grade my first effort a D-.  I think if I put the leftovers on rice, it might be helpful.  Idiot here thought using chicken broth instead of water would be a good idea.  No.  Not. At. All.

Even so, I do not think I can blame the failure on my fatigue, because I sat at the new bistro table for much of the time I was in the kitchen.  As much as I was absolutely certain that 1) I did not need a bistro table and 2) that one would not fit into the kitchen, my interior designer mother was right and I was utterly wrong.  I did need one.

I found this on Overstock.com for just $159 and added the glass table top to it.  It is solid metal since it is for outdoors, so even clumsy Myrtle cannot knock it over.  And, I am rather thankful to note, I have finally stopped tossing trash on the table top.  Moving the trash can from this space took but a few moments physically, but it took weeks and weeks and weeks mentally.  SIGH.

It is difficult not to dread the night before the day, the nights before the hard days.  I did not sleep much at all last Thursday night.  I cannot help but think I shall be awake this night, too.  I suppose, though, there is wisdom in bandaid-ripping scheduling.  Such a practice leaves little time for the devils that plague me to gear up and start a new attack.


I am Yours, Lord.  Save me!

No comparison...

I had my first doorbell ring today. I had hoped my first ring might be from a visitor, but it was the UPS man.  With Amos' objection to his presence on the porch, he needn't have bothered ringing the doorbell.  When I opened the door, the UPS man smiled and asked if I installed it myself.  I nodded and he replied, "Well done."  SIGH.  I really like hearing those words.

Mr. UPS man was delivering more ice packs.  Three freezer shelves are still not enough, but the four more Mueller ones will help.  Those are the larger ones that melt faster but help when I am also nauseous, as well as trying to numb the nerves on the back of my head, because they are larger and mold around the whole of the back of my head rather than just a strip.  To put it differently, I do not have to be careful to keep them in place when I am writhing in massive nausea.  [Sandra introduced me to the Mueller ones, for which I am ever grateful.]

The best ice packs are the Cold Pack from Walgreen's, the darker blue ones, for they stay colder the longest.  The lighter blue are 3M ones I get from Amazon.com.  At night, I put down a dark blue, two light blues, and then the wider one on top.  I discovered that I sleep longer if I have more ice packs keeping each other colder longer.  I put the Cold Pack on the very bottom of the pile and sometimes can get away with pulling it out, moving it to the top of the pile, and laying the side of my head on it to sleep a little longer before having to go downstairs for more ice packs.  My dream bedroom accessory would be a grounded, heavy gauge outlet in one of my closets in which I could plug a chest freezer that would somehow fit through the door.

The three dark blue ones on the third shelf (the bin is full of ice packs, too) are in ziploc bags because they broke open.  I woke with blue gel in my hair.  Since they are approximately $6 each, I put them in a Ziploc bag.  I wish I knew what kind of tape I could use that would stay sticky in the freezer so I could cut the bag.  I wish this because using them means they slip and slide all over the place with the extra bag material.  Plus, if I forget to unroll them, the extra two layers of plastic (when rolled up) blunts the numbing effect.

To get through the days and nights now that I have to lie down more, I need more ice packs. Still.  SIGH.  In case you were wondering, ice packs melt quickly, but they do not re-freeze in any sort of speedy manner.  I hope to get 4 more next month and 4 more the month following, depending on how much the co-pays of all the consultations and inevitable testing turns out to be.

Something I have encountered over the past years came up today and has remained on my mind as I thought about the added relief those four new ice packs will bring is this notion of the comparison of suffering. In my opinion, it is an errant one.

To me, comparing suffering is moot. It is like sin. Sin is sin is sin. What is a "small" sin to you might be a "big" sin to me, but those adjectives are useless.  Sin is sin.  Yes, the earthly consequences of sin might different from one to another, but the effect of sin is the same.  From my early evangelical days, I learned a definition that I still prefer:  sin is a state of being—separation from God.

Suffering is suffering. It is a battle of mind, body, and spirit, even if you are not fully aware of how all three are affected by your suffering. Physical suffering is never without some sort of mental suffering. Nor is mental suffering ever without an impact on the body. And all suffering affect the spirit, affects faith … how you think and believe and respond.

I have had people say to me that they felt bad mentioning their own suffering to me, even feel guilty about it.  Hogwash!  Now, I am not meaning to discredit their feelings, but I do wish to correct the thinking behind those feelings.  And not just the thought that all suffering is suffering.

I want to hear about the suffering of my friends and neighbors.  I am an ex-evangelical, after all. I pray for them and long to know how to best pray for them, even knowing that our Triune God is never unaware of their needs.  I want to hear about the suffering of my friends and neighbors so that I can encourage and support them.  And, selfishly so, I want to hear about the suffering of my friends and neighbors so that: 1) I might feel less alone and 2) might learn from them how to be better gracious about my own suffering.

It is okay to speak of your suffering, to let others know of your struggles.  No suffering is too small to speak of, to share.  It is okay to feel weak and weary, to be tired of your own struggles.  It is okay to feel as if your faith is paltry when you struggle.  It is okay to want to be a better sufferer.  It is okay not not want to suffer at all.  It is okay ... no matter how you are.  We live in a fallen world that makes a wretched existence from birth to death.  We also live in a fallen world made beautiful and perfect in the joy, peace, and forgiveness that we have, despite our struggles and failures, in the faith given to us from Christ.

From the moment of our conception, we are on a journey to death, a journey God never intended for us.  Our bodies, minds, and spirits battle our foe ... battle the devil, his minions, the world, and our own flesh.  There is not a human ever born who has not suffered, who has not struggled with the weight of life in a fallen world.

Sometimes suffering is of the body.
Sometimes suffering is of the mind.
Sometimes suffering is of the spirit.

Usually, it is some facet of all three.

I rather like what Luther wrote to his father, February 15, 1530, upon hearing of his illness:

Let your heart be strong and at ease in your trouble, for we have yonder a true mediator with God, Jesus Christ, who has overcome death and sin for us and now sits in heaven with all his angels, looking down on us and awaiting us so that when we set out we need have no fear or care lest we should should sink and fall to the ground.  He has such great power over sin and death that they cannot harm us, and he is so heartily true and kind that he cannot and will not forsake us, at least if we has his help without doubting.

He has said, promised, and pledged this.  He will not and cannot lie; of that we are certain.  "Ask," says he, "and it shall be given to you; seek, and ye shall find, knock, and it shall be opened unto you." And elsewhere:"Whosoever shall call on the name of the Lord shall be saved." The whole Psalter is full of such comforting promises, especially Ps. 91, which is particularly good to read to the sick.

I wish to write this to you because I am anxious about your illness (for we know not the hour), that I might become a participant of your faith, temptation, consolation, and thanks to God for his holy Word, which he has richly and graciously given us at this time.

If it is his divine will that you should postpone that better life and continue to suffer with us in this troubled and unhappy vale of tears, to see and hear sorrow and help other Christians to suffer and conquer, he will give you the grace to accept all this willingly and obediently.  This life, cursed by sin, is nothing but a vale of tears.  The longer a man lives, the more sin and wickeness and plague and sorrow he sees and feels.  Nor is there respite or cessation this side of the grave.  Beyond is repose, and we can then sleep in the rest Christ gives us until he come again to wake us with joy.  Amen.  (Letters of Spiritual Counsel, pp. 31-32)

Now, that whole "without doubt" bit does frighten me, but I am trying to hold onto the fact that God knows us, knows that it is not possible for us ever to be perfect in our trust.  And Christ's heart is always strong and at ease.  So, it is not that we have to always confidently and triumphantly thumb our noses at the devil with the truth of Christ crucified, for us.  No, even if all we do is moan and groan wordless pleas, the Holy Spirit will still take that ask to Christ who will carry it to the Father, all the while being the consummate obedient and trusting faithful servant of God for us.

Thus, if you are suffering and wish not to be alone with that burden, speak to your friends and family.  Do not diminish your own pain, your own anguish, your own confusion. If you are suffering, ask for someone to read the Word aloud to you, for it WILL ease you, even if only for a small spate of time, without anything else changing.  All the effects of sin in this world will remain ... illness, anger, violence, grief, loss, poverty ... all of it.  But the Word will lift you from that, will wrap you in Christ crucified for you, because it is more powerful than all the suffering of this world of all time melded together in a single moment.  The Living Word is the perfect bastion.

If you know someone who is suffering, bring the Living Word to them, for them.  Speak it, text it, email it, Skype it, mail it ... the Holy Spirit will do the rest.  Bring them great big chunks of it, if possible.  Read a gospel (like John) or an epistle (like Galatians) all at once.  Fill their ears overflowing with the prayers of the Psalter, so that they will know that they are known by God, known in their doubts and fears, in their illness and fear, in their faith and hope for salvation.  What are my picks for the Psalter?  Psalms 13, 27, 31, 42, 43, 51, 61, 69, 77, 91, 103, 104, 116, 121, 136, and 139.






I am Yours, Lord.  Save me!