Bumbling Along

The days are meaningless yet pass anyways

Wanton for a focus, a point, a reason why

So I wander through the rooms, this one and that

Waiting for my moment to arrive:  today or the next?

Ever seeking for answers over here, over there

That email tells me, “watch this!” for new keys

I don’t think anyone really knows how to help me

Sans my Heavenly Father who ordained this journey.

I trust my Lord who sustains me no matter

The segways that come again, again, again

Each one a little different so mindful I must be

Lest I miss the point of this seemingly wretched tragedy.

Pray tell the suffering goes on and on for years

Yet somehow I am not the same for having hung on

My needs provided for with a few wants in there too

Just gotta find some things to hold onto while I dwell in limbo.

For wherever we are going, my Lord Jesus and me

Will be worth it when I am with him always with no more weeping,

Maybe a blessing will come for being faithful or who really knows?

Only in His strength will goodness come as I bumble along til one day I am finally free.

sigh.

Until then, hang in there Gentle Reader.  And do take care, k?  JJ

Full Moon Follies

My beloved qualified as my “Night in Shining Armour” last night.  If only it were for a victorious time instead of quite the opposite . . .

One would hope that significant interventions to quiet my inner storm would start working already.  Or at least tame the tempest beast when challenges such as noxious exposures and the mysterious workings of a full  moon come along.  I have read a hundred or more testimonies of the latter:  that for persons battling chronic disease, symptoms can worsen around the time of a full moon.  Perhaps it coincides with the life cycle of various bacteria or parasites?  Who really knows?  What I do know is that the worst of everything came forth and both of us are pretty beat up today from the lack of sleep along with the emotional and physical trauma.

  • Continuous convulsive spikes of every dimension
  • Headache, joint and muscle pain, ringing in my ears, dysarthria, bradykinesia, left-sided parasthesia, hypersensitivity to sensory stimuli
  • Visual anomalies (spots of bright lights when my eyes were closed)
  • Cognitive slowing
  • Difficulty breathing and communicating
  • Incredible frustration and discouragement leading to hysterical crying and anguish
  • Neurological collapse requiring maximum assistance with feeding, toileting, and dressing
  • Eventually passing out in bed around 2:30 a.m., partially dressed with no recollection of falling asleep

The 100% THC-free CBD oil provided a temporary pause in seizure attacks as did a large dose of liposomal Biocidin.  The entire episode finally ended shortly after taking my (3rd) nightly dose of Low Dose Naltrexone.  I must add that the only positive part of this experience was when I could open my eyes and saw my hubby in his night clothes as he cared for me.  I liked that!

Please pray for us.  We are exhausted.  The demands of life go on just the same.  My MRI with NeuroQuant study our of State will be delayed due to severe weather expected tomorrow; I am hoping to reschedule the appointment for later in the week.  Let’s hope that the NeuroQuant and the updating of multiple medical tests this month will be fruitful, Lord willing.  My Jesus goes before us and sees us through it all.  I trust in His timing, His plan for our lives.  Thank you for praying.

And thank you Steve for your heroic love and care.  May the Lord carry you today.

We wait on the Lord this day and always as we try to figure this out!  This illness is killing us. JJ

A Pig for Sale

Only in Indiana.  Or maybe in any other State with farming.  Well that would include all 50 States.  I guess it’s just new to me . . .

The Facebook page for selling stuff in my town had a posting for a pig for sale:  $300 for the live beast.  I actually thought about it for a moment!  The biggest issue would be finding a place to store all of that meat.  Our lil’ freezer just ain’t big enough for my hubby’s ice cream and my bone broth in addition to a virtual bevvy of pork!  Darn.  I’ve been missing BBQ ribs for some time now!

I suppose that someone else with a chest or upright freezer will jump on the offer.  Maybe our neighbor who bought our used freezer will find it in her budget to feast on Porky Pig for the rest of the year?  Or maybe not.  But if she invites us over for some Famous Dave-style ribs I am sure that we would oblige!  We will even bring my Grandma’s famous potato salad.  Yeah I won’t forget the horseradish, pickle relish, and bacon grease (aka “secret ingredients”)!

Porky Pig here.

Porky Pig here.

We live in a time where you can buy and sell just about anything.  With the diversity of our world and our accessibility to most of it via the internet, we can get much of what we want for a price.  Do you want someone to paint your business logo on his hairy belly and sing a song for you?  Just check out the gigs on http://www.fiverr.com and it will be yours for the price of a latte’.  My preference for that one would be “NOPE.”  That is, in the physical realm.  There are other realms for which I would need a song you know.  And tonight my heart realm can’t buy me even a lullaby for peace of mind.  My heart is breaking and there simply is not much I can do about it but pray.

My brother, Mike, whom everyone else calls Michael, continues to live in a wretched inner city nursing home after a serious stroke.  He is four months post-CVA and three months enduring the “3 hots and a cot” provided by a one-star facility.  I flipped when I found out that he had an infectious rash on his hemiplegic hand!  I asked his fiancé and Mike to check for signs of bed bugs and call the State Ombudsman immediately if they found any signs of them.  Mike’s roommate itches too.  Hopefully it will be a case of an allergic reaction to the laundry detergent.  But why would the bumps become infected?  Good golly.  Water (no juice, milk, or coffee) for breakfast, a delayed response for significantly elevated blood pressure, and no follow-up whatsoever on a 6 cm kidney tumor ARE ONLY THE FIRST THREE items in the long list of substandard care complaints.  So sad.

Lisa, Mike’s precious fiancé, is at her wit’s end trying to get Veteran’s Administration or Medicaid benefits processed correctly to change his situation.  She faithfully visits him when she can, brings him home-cooked food, and follows up the paperwork nightmare as Mike’s legal guardian.  Just when I wonder if things moving forward fast enough or why she hasn’t returned my phone calls I find out that she has started a new job to try an better their overall situation.  She is such a trooper.  Thank the Lord for Lisa’s love and care for her Michael.  And our cousin, Lisa, helps out where she can as well.  Cousin Lisa is an optometrist for the nursing home and has more than once been able to positively influence his care by her presence, her visiting, her dipomacy, her support of fiancé Lisa.  They are doing the best they can and that is both a gift and all I can ask from 200 miles away.

This is such a curious situation, you know.  I am an occupational therapist with over 30 years of professional experience including patients with the very same medical condition as my brother.  Yet due to a severe illness I am enduring, I cannot even visit him!  The dirty conditions of his living environment would surely trigger seizure-like attacks for me.  Chronic Inflammatory Response Syndrome, Multiple Chemical Sensitivity, or whatever you want to call this nightmare is keeping me from seeing my brother.  And this is the Lord’s plan for both of us right now.  I don’t understand it.  My heart is hurting.  I would be honored to work more closely with Mike, even provide supplemental therapy or visits.  I cannot do it right now.  Oh sure, I send him something in the mail occasionally or make a phone call to his facility and get placed on hold for a very, very long time before actually getting through to anyone less than 50% of the time.  We are all doing what we can and waiting on the Lord.  It’s just so very frustrating for each of us!

So if you’ve got an extra 300 bucks to donate to our cause, kindly send it to St. F—— Nursing Center in D—–, room 207.  Leave the pig and get my brother out of there please!  They might not notice Mike missing for awhile since a piece of meat is a piece of meat when you don’t care much for the sweet sense of humor that used to characterize my tall lanky sibling.  Oh geez, I’m getting a little upset here aren’t I?  Well at least the pig will stomach the food a little better without complaining.  Like the Cheerio’s commercial said many decades ago, “he’ll eat anything!  Hey Mikey!”  Yeah but it won’t be Mikey.  One day Mikey will be gone from the place he and his fiancé are calling, “the dump.”  May the Lord pour out His grace on those left behind when he does go.

I just hope that moving day will be soon.  O.k.  I’m done venting.  Gotta get back to praying.  JJ

sad pig