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.