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.