Nine in twelve...

I had nine medical appointments in twelve days. 

I've been primarily sleeping since I arrived back home from Friday's testing.  Today is Monday, although it has barely begun.  For me, it is still Sunday.  As Monday, it is my last day of being radioactive from the nuclear scans I had before and after the stress test.  It is really hard not to worry about the radioactive liquid being injected into your vein when it is brought into the room inside a lead container by a tech wearing a radioactive alarm badge and ring, because even spills are dangerous! But, you know, I'm not to worry about it at all!

I tanked the stress test.  I was so very surprised at that.  Just a few minutes into it, my heart rate began to plummet, as did my blood pressure, until the latter was unreadable.  A chair was put on the treadmill and lots of worried folk surrounded me.  I wanted to try again, but I was overruled.  It was the chemical version for me.

Two weeks ago, during my last appointment with my GP, we both had been thinking the same thing: despite my ongoing fatigue, what if I started back on the treadmill?  She thought I should and suggested I start at 5 minutes.  I laughed at her number.  I did check with my cardiologist, who was in full agreement that I should start trying to regularly exercise and that is what I could do before my long illness, before my life consisted of falling asleep all the time.  But my GP wanted me to get through Friday's testing first.

Everything was normal.
No answer as to why I am having chest pain.
No answer as to why my pacemaker is giving me tachycardia at rest and whilst I am sleeping.

Despite doing little besides sleeping, taking Amos out, feeding him, and eating myself on Saturday, I did try the treadmill.  My body started tanking at 4 minutes! My treadmill was not on an incline and I was walking much slower.  I pushed through to 5 minutes anyway, but it was a close call to remaining vertical.

Today (Sunday) was much the same as to activities, with my endurance on the treadmill lasting only 3:31 before my body tanked.  I still pushed until that 5 minute mark.  I am stubborn that way.

I might also be stupid.

I am deeply frustrate at what my long illness has done to me.  In many ways, I feel like my doctors are not hearing me about how weak I still am.  It is not like I have been super lazy.  I mean, I live alone.  So, I have to keep my own household, which includes a dog.  Yes, cleaning is mostly on the back burner, but I do have to keep up with laundry and food and trash/recycling and ten million medical appointments.  My home is effectively three floors, so I do have to walk up and down stairs.  And the Rat Bastard requires me to go outside with him and be with him as he tends to his business, actually walking around with him if it is his major business.  I even have to go accompany him each time he drinks water because Mr. Prima Donna will only drink water he sees freshly poured (otherwise he goes to the "fresh water" in the toilet).  So, it is not like I am sedentary in between all my napping.

A while ago, I launched the Take Back My Life Campaign, so I am doing small tasks around the house every day to catch up on months and months and months of illness and then surgery.  Even today, with the help of Leslie's pop-by visit, I emptied my dishwasher, so I could empty the dirty dishes in the sink.  I also folded a load of laundry in between naps that I washed in between naps yesterday. And eventually the exhaustion of spending seven hours going to the hospital for all that testing and then the lab for blood work after a week with four other appointments will be wiped away with all my extra napping and I will be back to my normal crushing fatigue and can accomplish a larger task, such as organize my bathroom cabinet, which has been wanting for months now.

But I've got four appointments again this week. So, I imagine I will be sleeping much of the day for the rest of this week and weekend and maybe into next week.

Four and five...

 

Four appointments this week, three of them yesterday!  I was so incredibly exhausted.  I have five appointments next week.  One of them is a treadmill test that involves two isotope scans of my heart.  If that comes out clear, then we shall set aside the chest pains for now.  SIGH.

The fast heartbeats are either arrhythmias my pacemaker is not picking up, tachycardia, pacing, or a figment of my Fitbit, since my pacemaker it not show the same high numbers!  THAT surprised me.  My GP suggested that I also use my pulseoximeter to double check my heart rate.  She has such a brilliant mind!  Of course, I forgot to do that at 5:31, 6:09, and 7:11 this morning.  SIGH.

I haven't accomplished much the past three days.  I am bothered with how fatigued I am.  Instead, I mostly languish on the sofa and sternly tell myself to DO SOMETHING.  Then I do the tiniest of somethings on the computer.  Well, Wednesday, I did reconcile my checking account, which I had not done for a month.  Usually. I do so every two weeks.  It was good, because I had forgotten to transfer the money from savings for a few the purchases on the credit card this past month.  The credit card whose payment is automatically made on Wednesday.

Yesterday, I put a birthday card out in the mail.  I did not catch up on the dishes.  I did not finish off the two pots I promised to do last May.  The pots I got ready to do when I began the Grand Fall Migration last Friday and left the two donor sedums plants downstairs instead of taking them from the front porch on up to the solarium.  I did not make the pots Friday, Saturday, Sunday, Monday, Tuesday, Wednesday, or Thursday.  I hope to do so today.  Maybe.  The pots are ready.  The donor plants are here. The pruning scissors are here. The rooting solution is here. The mulch is here.  It will take me all of about 10-15 minutes.  SIGH.

Leslie popped by yesterday.  She arrived before me and napped.  That warmed the cockles of my heart, because I have been telling her that she could do that anytime she wanted.  With the market so hot in Fort Wayne, sometimes she has unofficial offers before a house is even listed.  It is rare for a house to stay on the market past a couple or three days.  She has been working at breakneck speed since last year, without the usual break over the winter.  

I had received a $10 DeBrand's gift card.  She has oodles of gift cards.  I was hoping she would trade me chocolate for food.  Sure enough, she did!  I now have a $10 Chick-fil-A gift card.  So, instead of chocolate I have never had, I get to have a salad I normally wouldn't buy because of the cost but really, really enjoyed once.  I am happy and she is happy.  Trades are wonderful.  I wish I lived in a place (the south) where trades were more common.

I have an appointment the 11th with one specialist and the 12th with another.  After that, I am hoping that I can take a break from doctors for a while.  It has been exhausting just doing physical therapy twice a week, much less all the doctor appointments on top of that.  

Even though I just said I am getting nothing done, I would like to clean my home a bit.

Crushing fatigue...

 

Saturday I got out in the yard for the first time since I fell ill in February.  The work makes my soul sing and warms the cockles of my heart every time I lay eyes upon it.  I shall post photos later, even though it isn't much.

I came inside. 
I fed Amos. 
I ate. 
I slept 20 hours. 
I woke. 
I putzed around. 
I slept another 4 hours. 
I putzed more. 
I went to bed for the evening. 
I slept 14 hours.

I am exhausted.

I have been ever since I have been ill, even more so than my normal exhaustion from being chronically ill.  The crushing fatigue is really no better.  I fall asleep at the drop of a hat once I do something, anything, being it physical or mental labor.  I engage my body or mind and I have to rest.  Hours of zonked out sleep.  Dead to the world. No say on my part.  I fall asleep whether I want to or not.

Sunday, the reason I slept 20 hours is that when I am that exhausted, I have to sleep until the dizziness is gone.  I get this dizziness in my fatigue that makes getting up actually pretty much impossible.

Right now, I'm still on the sofa, having been trying to stop sleeping here long enough to get up to bed. I need to get up there by 5:00 AM since the heart monitor is back up there now.  Amos very much prefers it. And is it better for me.  Besides, there are fresh sheets up there that have only been slept in once!

But I come home from physical therapy or some other medical appointment and the work of getting dressed and going out has me exhausted.  It is all I can do to feed Amos and myself.  I then often fight falling asleep or give in and sleep the evening away.  Wake for midnight meds.  And then doze until I can drag myself upstairs.  Well, sweet talk Amos outside and then upstairs.  Amos is quite good at keeping me company in my exhaustion.

I want my half-energy back!

Always...

 

I cannot think of the word right now that words like "always" are.  That is an example of my brain not working that breaks my heart.  Anyway, you are not supposed to speak in those kinds of words.  Because no one is ever "always" or "never."  It is definitely not the way to fight.

But I will always be filled with shame in the very core of me.  
Age three was too young.
Nothing has changed.

The echocardiogram was a shambles yesterday.  I am still a shambles.  I am filled with shame.  Walking around reliving over and over the touch from them because I can still feel the touch from yesterday.  I have not yet found a way to break that flashback completely.  I think I have and then it comes flooding back.  My chest is that way.  There is too much there that I cannot contain.  

Not now.

Two weeks ago ... and a bit.  I was getting ready for my appointment and the call I had was not with my therapist but was with the center telling me she closed her practice. No warning. No goodbye. She promised me that she would never do this to me, that she would be with me through the whole way.  Here I am, flayed open. And I am left alone, unworthy of help once more.

You cannot trust anyone.
I will never try again.
How do I live with the truth of me unburied??? 

I babbled a mile a minute during physical therapy on my hands just now to get through it.  My therapist was surprised. Amos wasn't fooled.  He was worried and agitated and wanted to be against my chest the entire time, which isn't possible during physical therapy on my hands.  It was a mess.

I am a mess.

Hiding that is exhausting.

Lessons from the field...

 

"At Play in the Fields of the Lord," in my mind, is a film based upon a book by the same title, based in the Brazilian Amazonian River Valley revolving around a Niaruna village.  In the name of progress (and the always accompanying greed) their lives and culture are threatened, which is a major thread of the story. Also part of the weaving are missionaries who go native, marital infidelities, insanity, death, the worship of nature, evangelicalism vs Catholicism, disease, betrayal, and grief beyond measure.  You end up painfully caught between the mess of human relationships and the reality of our sinful nature and the inexorable outcome you just know is coming for the Niaruna people. It is a most uncomfortable film.

I have never forgotten the distress of that film.

To me, none of the missionaries take seriously their work, so I find the title rather apt. Behind everything is this sense of self focus or adventure, almost for some a setting up some sort of playhouse in the forest.  Harsh, I know.  I did read that the movie should have stayed a book.  Given how strongly I responded to the movie all those years ago (just look up the actors!), I cannot fathom how much the book could drag you down the rabbit's hole.  Of course, Hollywood wouldn't know the Word of God if it hit a writer on his head. A passel of writers would still be scratching their collective heads about vocation.  So, of course a novelist or a playwright would not understand the ineffable value of a field of the Lord.  

Oh! For they are precious indeed!

I am so lost that I thought I started watching those videos this last spring.  I guess it has been more then a year now, because I went to go looking for a blog title for a date range and there was nothing in the spring.  Hello, Myrtle! You were too ill to stream or write in the spring!!  I did see a post entitled "I Am An African Man" from October 2019.  2019!  Oh, my ... the time.

What I was watching earlier was about change, which is not really the topic I wanted to note now. At the end, he said that what they had learned from the past five years was that you have to respect people: 

"If you want to help me, I must feel respected and appreciated."  

And that's what we learned in the field of jiggers.  You meet this person with jiggers and you try to despise them and they reject your help and they tell you, 

"I would rather have my jiggers than have someone shit on me. You come to my home.  I know it has jiggers, but it is still my home.  You must respect my home."  

And that is how we have survived and learned to work with people.  We appreciate it and people come to where we are to be helped.  

~Jim NDuruchi, Emmanuel (7) HUGE JIGGERS Dug Out of Him (2 of 2), March 16, 2016 

It might be hard to fathom, but you need to be able to exchange the word "jiggers" with anything. Alcoholism. Hoarding. Gambling.  You HAVE to respect and appreciate the person if you want to help him or her, because you are respecting the life that God has created.  There is a future in which you are investing, you are cherishing, you are helping God to save.  Even if that future will be spent in a prison.  It is still a life that can be lived with honor and value and love and purpose.  

Pot calling kettle black.
I know.

Anyway.  I really liked this bit and noted it down in my collections of observations about people that I am collecting from the videos.  When you spend years helping people in the condition he and his team do, you cannot help but make observations about human nature.  I find it fascinating when he does, especially when he couples them with quotes from the Living Word.

I can tell you from experience, my current GP and the therapist I've had the past nearly three years both were the first who showed me that I was respected and appreciated as they helped me.  It is extraordinary. And empowering ... once you gain your courage.  I am/was even valued by them for what I can/could offer.  Just because someone is broken in one way, doesn't mean that that person might not end up helping you back!

Besides, for me, in helping others myself, I have always been, by the end, far greater blessed myself than they could ever have been.

Third night in six...

 

...of battling my stomach. Since adding meds, it's felt like a holding action.  The new GI doctor said we cannot schedule a look-see until December.  I am losing my appetite again. Just looking at food is exhausting for knowing that I have more than a good chance my stomach might not like my eating.

I am weary of my body punishing me.

Four things...

 

I wrote down four things I wanted my GP ... I should start calling her my General Contractor ... to try to help me address: 

• My stomach
• The pain in my right hip?
• The pain in my muscles
• The pain in my left foot

Right now, at this very moment, I am trying very hard to not desire the amputation of my legs.  The pain in my thigh muscles is ever so difficult to endure. This is especially true because, at the moment, my hands are mostly useless for massaging the pain.  The massaging is mostly helpless, but it is something to do besides just lie there and endure the pain.

We stopped Lipitor in case it was that medication, but nothing changed.  I, personally, do not believe this is a side effect, because it comes and goes and moves from muscle group to muscle group, much like the nerve flares.  It is a muscle flare.  Not cramps.  Aches.  Deep aches.  Almost bone-breaking muscle aches.  At times, I am certain I cannot bear another moment and confess I clutch Amos ever too tightly.

And, right now, at this very moment, I am having nerve pain flares in my hands. Lightening strikes at the base of my palms, moving down the inside of my wrists. More so on my left wrist, with pain also shooting up into my ring finger.

And, right now, I have the ever present numbness and tingling in my lips.

And,
And,
And.

I was reading someone's writing that started with how good God is. Shame and failure immediately flooded me. It is not that I do not believe that God is good. It is that I am being assailed on so many fronts by my own body and in so much pain all the time on top of everything else in many different ways that I do not start with God is good. 

I start with: How do I get through this moment? Often, that is followed by spoken gratitude for the gift my Good Shepherd has given me to help me: Amos, the sight of a bird, a flower, the taste of bacon, rain watering my new trees, the opportunity to help someone, the sound of water in my fountain, the sight of a tree frog, the smell of wet mulch, etc.  So, just maybe, I end with God is good, I just use different words.

I did, goodness, more than a year ago now, I think, start saying "Thank you, Jesus" for every good thing that I receive, both tangible and intangible, everything that I experience, because James teaches that every good thing comes from God.  I wanted to hear the thank you in my own ears to teach myself to be more grateful.  To be my own example, if you will.  I believe it worked.

But, back to my original point: I bewail my misery first. [I really need to find that bit in the Large Catechism that uses that phrase.] I bewail my misery first, because even though I do strive very hard to enjoy the life I have in-between the major flares, even that existence is fraught with a body that is assailing me on all fronts. Is that the wicked way, or one of them, from Psalm 139 that God needs to root out?  I do not begin my writing in places that God is good?

SIGH

Do you think...

 

... if I go back to Walmart and say that, at 53, I am a lifelong expert on peanut brittle and this batch is bad, I could get my splurge money back?