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?

Splurge failure...

 

Peanut brittle requires salt! I treated myself to some at the Walmart bakery to try and raise my spirits.  I ate far too many bits of it trying to figure out what was wrong with it.  Finally it struck me.  There was no salt on the peanuts or in the brittle or however it should be. No contrast. No sweet, really. No peanut taste. Anemic. And far too expensive a failure to me. My battered being really cannot take another blow. I don't even have a workplace where I could bring in the nearly full container to offload its contents to a hungry hoard.  I loathe throwing food away. Especially something that was supposed to be a treat. The story of me.

The two Myrtles...

 

There are two Myrtles in truth. There is the one who very seriously wants to die, who thinks about it every single day. And there is the Myrtle who trudges on.

I do not care for animation. I do very much care for Claire Crosby. She, and her family, is a bright spot in my life. A while back she sang a song with which I am not familiar with because I do not care for animation. I do particularly care for her version of the song having now Googled the original.

I've seen dark before, but not like this
This is cold, this is empty, this is numb
The life I knew is over, the lights are out
Hello, darkness, I'm ready to succumb
I follow you around, I always have
But you've gone to a place I cannot find
This grief has a gravity, it pulls me down
But a tiny voice whispers in my mind
You are lost, hope is gone
But you must go on
And do the next right thing
Can there be a day beyond this night?
I don't know anymore what is true
I can't find my direction, I'm all alone
The only star that guided me was you
How to rise from the floor?
But it's not you I'm rising for
Just do the next right thing
Take a step, step again
It is all that I can to do
The next right thing
I won't look too far ahead
It's too much for me to take
But break it down to this next breath, this next step
This next choice is one that I can make
So I'll walk through this night
Stumbling blindly toward the light
And do the next right thing
And, with it done, what comes then?
When it's clear that everything will never be the same again
Then I'll make the choice to hear that voice
And do the next right thing

My lesson for today...

 

You really cannot trust anybody.

What was that...

 

For five months, since I've been ill, I've had this pain in my chest, left of center over my heart. Periodically. Regularly. Sharp. Stays for a while. I don't know how long.

Yesterday, it came again.
Then it began radiating.
And increasing in pain.

A part of me wanted to go to the ER, if nothing more than for an EKG and an troponin blood test.  But I didn't want to be admitted.  And I was just a bit too scared to make a decision.  I wasn't having any jaw pain, back pain, nausea pain, or pain in my left arm.

Instead, I texted my doctor. Then, later, I messaged my cardiologist.  As a result of the latter, I am going to  see my cardiologist on the morrow.  I am not sure if it is just to explain what is happening or if it is to schedule testing.  Sometimes, when new developments of my conditions arise, he explains them to me bit by bit.  I might possibly be one to worry with my body attacking me right and left over the past three and three quarters years.  So, my main doctors all have taken a when-we-cross-that-bridge approach to bringing things up to me.  Mostly, I don't mind.

I do wonder ... what was that!

A sentence...

 

A sentence.

I told myself if that is all I could write and post, I would do just that.  But, instead, I let my own world of pain overwhelm me once more. Well, I've come up for air, determined to turn a corner even if a corner is not there.  Can one make her own corner?

Did you know that my right jaw pops out of place? No, of course you don't.  I haven't written that.  Another agony.  I cannot even pursue that.  It would not be covered by insurance, I believe.  The growth I have on my tongue, it turns out, will be, at a measly 60%.  I know, I should be grateful for that much, but when I think down the road to the biopsy and more, because it is growing .... But I digress.  The jaw joint is yet another oral surgeon and would not be covered and a first visit would be more than the $100 I paid for the growth on my tongue (two of my medications can cause cancer).  Do I even go to find out what the whole shebang would be to repair my jaw??

Daily ... all the day long ... I gently open my jaw to see if I will need to move it over.  How long, I wonder.  How long can I live like this before I won't be able to push it back in place so I can unlock my jaw?  SIGH.

Anyway, I see the new gastroenterologist on the 13th.  Another new specialist (my first left the practice).  Another problem with my body.  

I am going, though, because my stomach has become more and more my enemy than my friend.  The nausea has worsened, though I cannot believe that is even possible. That is not enough to bother me. No, I now have pain and cramps and a strange sort of illness and gurgles that sound like they should be coming from a bear or even elephant.  Not all at the same time.  No rhyme or reason. Though, if I wake up with nausea, it will stay the day even if I take Zofran round the clock.

This summer, when I saw my cardiologist, he suggested that I try focusing on one thing at a time, perhaps because I had been so ill and would be a long time recovering (I still fall asleep at the drop of a hat and poop out after the smallest bit of errand running or puttering out in the yard).  He advised that I focus on getting my hands fixed, at the time not even having a date for the surgeries.  I liked his advice.

I cannot follow it now, though, because my hands will be a long time recovering, and there are days when I do not believe I will get through the very next second with my stomach.  Somehow I do.  

I believe I will be having an endoscopy.
I am afraid to be put to sleep again.
Deeply.

I know it needs to be done.  Something is different.  My reliable, cast iron stomach has failed me.  It is crying out for help.  I am now on two new medications and have tried a fungal antibiotic and steroids. I think I have an alien.  One doctor wonders if I have an ulcer that I cannot feel, since one of my medications took away my sense of hunger years ago.  Maybe it took away other stomach sensations.  A valid hypothesis.  I am on meds, as I wrote, that cause cancer.  Two of them.  I think I am too bovine for it to be that. Although ... I have lately found myself eating to keep the nausea at bay since it is worse when I am not eating than when I am chewing and swallowing.  A poor treatment plan on my part. Another doctor believes it is a massive case of gastritis from the long illness and will take eons to get better with large doses of the Prilosec I am taking.  We shall see ... eventually.

There is one anesthesiologist, Dr. Mistric, who is skilled at putting me to sleep and waking me up.  She's done it three times, where others have fumbled.  I've asked for her whenever I can once I tracked her down.  I've already started my pitch.  If you pray, you could begin praying for her to be my sleep doctor on this.

My Fluffernutter

 

I am not a cat person. At all.

I have many stupid cats around my house and in my back yard. In my FENCED back yard. Today, this cat was hiding behind a plant next to the back steps.  We were almost to the back steps when this orange cat darted out and attacked Amos.  His right eye and nose were punctured.  He is hurt. And I hurt for him. 

And I am angry.

I want to be safe in my own house and in my own yard. I am tired of community cats. I am angry that by attracting birds so that I can be comforted by them and their birdsong, I have attracted community cats who then chased away my birds.

They took away the joy of my back yard.
And its safety.

PVCs...

 

Ever since the long illness, PVCs have become a part of my life.  February 20th was my first symptom. Three days later I had severe viral bronchitis. Eventually I had viral pneumonia.  Then I had pleurisy. Along the way, the strain of all this brought PVCs.  And stressed my nervous system, too.  My stomach is as yet undiagnosed, so it could be the illness, it could be from a rather strong antibiotic I had previous, or it could be from something else.

Today, just before two in the afternoon, I had the worst PVC "attack" to date.  I vomited from it and was still nauseated when it was over.  I am fairly certain the palpitations were the PVCs, because I am fairly certain my pacemaker was doing the ventricular pacing.  It was forcing me to stay at 120, with those terrible flip flops happening more strongly than I have ever felt, like a war was going on inside me. When everything subsided, I leaned over and grabbed my Zofran, cleaned my face up with my water bottle, took the med, and lay down. I was so very shaken and weak.

I spent hours trying to recover from that.  
I still feel rather horrible.
I just took more Zofran, remembering it's long past the 8-hour window.

I sent a message off to my cardiologist not too long after.  I think. Maybe it was a while. Before the office closed.  I did because if their wasn't a warning on the monitor (if the nausea wasn't from a heart event), then he could look at the monitor to see if it was a PVC and how long it lasted. They had calmed down a bit by July. And Becky's visit made them rare.  This one sideswiped me! It's intensity terrified me.  I hope he does his "It's just fine routine." where he goes on about the crappy disease I have and this is precisely why he stuck a pacemaker in my chest that comes with a free home monitor!  Lucky me.

My head aches.  It's been aching for two days now.

I'm scared to go to sleep after what happened this afternoon.  I wish someone would sit in the recliner in my room and read (listen to me breathe).

Sleep, sleep, and more sleep...

 

I wanted today to be a lazy day of labor.  It was a lazy day of sleeping instead.  I did see Leslie, and we spent some time out in the Haven.  But she left and I ended back asleep.  I am frustrated.  It was just like back when I was first waking up from being so ill.  As if I am back sliding.  But perhaps it is because I haven't been sleeping much with the pain in my hands and wrists.  Dr. Bryan and I have been talking in the phone at long last.  She suggested that I try voltarin gel.  I have been.  I think that is helping, along with the ultrasound treatment I received in PT yesterday.  So, I have been catching up on my sleep, perhaps???

Micro...

I told myself that once I got up the courage to come back I would stay.  And that I would because I would start microblogging.  I am most certain that is actually a thing out there in the world, but for me it means that I will just splash upon the page something short, if not sweet, even though I prefer to wander about my thoughts upon the page. Though brief is not a word anyone would think to use about my posts.

I had a terrible stomach flare, such as I get ever since I had this too-strong-for-me antibiotic early this year, last night and did not sleep much.  So I was under slept and grumpy this morning, reluctant to get up for my appointment.  Amos, my nursemaid at home, was also under slept and grumpy this morning, even more reluctant to get up for my appointment.  I had to DRAG him off the sofa, after two unsuccessful tries and a colossal amount of snipping, which made me even more grumpy and which made me forget the most important task of leaving with him in the morning.

I remembered that task too late whilst waiting for the nurse to come fetch me from the waiting room.

There I was, weary, seated with Amos at my back, scanning the room.  To my horror, I saw a pile of brown plops where I had been waiting on a patient who had gotten up from his seat to tell a story before I could move forward to check in for my appointment.  Amos had made not a sound.  Nor had he asked to go out before we left.  Once in the car.  After the half-hour drive to the appointment.  Or before we headed into the building (we always make a pit stop before and after appointments, something he now does without being prompted).  

I was so embarrassed.
The receptionist was not pleased with me.
I asked for supplies, which I got, to clean it up.

My appointment was dimmed by that, but the sincere care of my pulmonologist for my whole being soon brought me out of my funk.  She asked about my surgery and wanted to see my scars and to see where my pain is worst.  She wanted to hear about my stomach and had two ideas for me.  And then she listened to my pulmonary review, with my one bad spell whilst Becky was here and the ongoing pain in my lower throat.  She had an idea for that.

She spent a very, very long time with me working on helping me.  The medicine she chose, the immunosuppressant, wasn't the only option for lungs.  She worked on choosing the best option for Sjögren's presentation in my whole body, not just my lungs, even though that is not her job. And she worked with and desires to continue to work with rheumatology and neurology when it comes to treatment where the medications can complement or work against each other, willing to take suggestions from them for changes if need be.  So, I have a drug that is helping my teeth and my eyes, as well as my lungs.  It took much, much longer than she thought it would to start working and she was ready to give up on it, but the medication started working and has show evidence of helping more and more, most clearly with my eyes as a bellwether for how it is affecting me elsewhere.

I realized today that she likes to solve problems for patients, even those not her own.  So many specialists will not stray one iota outside their lane.  She drives in all lanes, going in both directions, and doesn't mind straying onto the shoulders if need be.

I like that.
I like people like that.

So, my thought about microblogging was to just write. Even if crazy brief (which this wasn't). Even if I cannot remember what I am trying to say and cannot finish.  Even if I cannot make it make sense and am too tried to keep trying.  Just try to capture at least something of the day.

Did I miss yesterday?  PT is going to stink.  Breaking up scar tissue beneath my incisions is called "scraping."  Did you just have the same reaction I had hearing that word when you read it?  That sounds insanely painful.  I do get some pain therapy, which will include ultrasound and, hopefully, at least one other soothing processes.

It was mostly assessment, which was painful.  Then I was given homework.  The truth about PT is that you will only get out of it what you put into it.  In sum, you have to the homework if you want to get better.  The homework stinks.

I started slathering Voltaren gel on my hands.  I am hoping it will make a difference.  Part of me wonders if this will be the pain that breaks the camel's back. 

What can I say...

 

I know now why all the other dysautonomia bloggers went away.  It is just too awful.  Too much sickness. Too much pain.  Too much loneliness.  No one wants to hear it.  For me, with Sjögren's, it's worse.  Although, I have learned that Sjögren's is my egg to neurocardiogenic syncope.  Autonomic dysfunction (dysautonomia) comes from autonimmune disease.  That is the cutting edge study.  But does it really matter? In the end, knowing hasn't changed my treatment.  I have just received more diagnoses as my body has attacked me in more and more insidious ways.

Recently, Sjögren's has essentially given me the equivalent of carpal tunnel syndrome or at least made me need the surgery for it in both wrists as the nerve was being quickly damaged and I was losing feeling in my fingers.  I am not healing well from surgery.  I am in pain.  Is it slow healing?  Is it Complex Regional Pain Syndrome?  Is it Small Fiber Neuropathy? A combination thereof? Take your pick.  I am miserable.

I took a look at my kitchen counter, a veritable disaster since Becky left on August 25th, and thought Hollywood could use it in a movie about a woman who had given up on herself and the world. Piled with food bits and dishes, since the dishwasher was full, and the sink, I had no more utensils or dishes or glasses to use.  Amos had woken me for meds and his breakfast and instead I girded myself to finally tackle emptying the dishwasher, refilling it, and doing the hand washing. Seventy-three minutes later, things were more decent in my kitchen.

I want my hands back.  It's been since July 31st since I lost my right hand.  I know that is not that long, but living alone is it an eternity.  My dearest friend came and helped immensely, but I am back alone and can do hardly anything.  My neurologist said my hands should be weak and the surgeon's physician's assistant said my hands should not be weak, but they are.  And I have not been a wimp about trying to move them or use them as I was told.  Not from the very moment I was wheeled into recovery the first time.

I want my hands back.

I start physical therapy tomorrow.  Since I have scar tissue beneath my incisions in both hands that has to be broken up, I already know it is not going to be pleasant.  But I have terrible, terrible cramps in my hands all day, every day.  The PA said that the therapist can help with that.  I am fervently hoping that is true.  I think Amos is, too.  He is most tired of my moaning and groaning, my whimpering and weeping now that I am alone again.

I miss writing here.  I miss writing.

I have been listening to this man who is serving folk in Kenya.  Folk who are suffering in the cruelest way. Folk who are so very poor.  Anyway, he was talking about Covid-19 and said something that struck me.  It was from a video back in April, but I just watched it.  He said something along the lines (I need to rewatch it) about how we shouldn't let it rob us of our joy, the joys in our lives.  We do have joy, because of the grace that God shows us every day.  Like the silly little things that Amos does that makes me burst out laughing after over nine years even when I am sobbing in sickness because he is just so adorable and just so caring of his puppy momma. Covid-19 is from our enemy.  He didn't mean China.  He meant the devil. Don't let the lion that prowls around us trying to attack us win.

I have been so very ... upset ... about so very many things about Covid.  I was ill for just over five months with pulmonary illness that was so hard on me that it bothered my heart and my nervous system.  It is still bothering me.  Two of my doctors believe it started with Covid, or rather that Covid was the precursor to the viral bronchitis that was my downfall.  Whatever the case.  With now cranial hyperhidrosis, wearing a mask is a great misery to me that ends with difficulty pushing air in and out a sodden mask and pain in my throat and chest as I do so.

Being chronically ill, I have learned so very much about the Word of God, especially the Psalter.  I would not choose this life, but I cannot say it has been 100% wretched.  Physically, yes.  But ... what I have learned ....  Listening to the man serving others reminded me of that.  

Gosh, I'm bungling this, because I am NOT a suffering saint.  I despair of that more than anything else in this entire world.  I despair of my doubt of my ability to believe.  What does that really mean?  I mean, I know what I do believe.  But there are some things I struggle to believe.  I can write about that later.  Still, I believe the Word of God is powerful, performative, is and can do all that God is and has done as the Christian Book of Concord teaches.

I've been letting Covid-19 take that away from me lately.  How I feel about masks and all the other ways it is changing our world, my world.  What it is taking away from me.  I was reminded not to give my enemy that power because Jesus has the victory over Covid-19, even if it doesn't seem like it right now.  Even if I cannot understand it.

Well, crap Myrtle.  I guess Jesus has the victory over your hands, too.  How can that possibly be? I mean, Ultimately, if I do get to have an eternal life with Him, that would be a victory.  But now? I want to be that suffering saint who praises God for the hardship of daily pain, of cramps so bad that sleep is hard to come by, dozing here and there, even when your bestest friend is here and you are wasting precious time with her when she's awake because your nights are spent battling pain.

Argh.  I'm just rambling on and on.  Not much worth reading.

I do want to write again.  
I want to write for me.  
I need to write for me.