The people you meet

Facebook-Phone

We may never have shared

A cup of coffee or tea

But you are my friend

Even when your face I cannot see.

Seems strange to those

Who are able to come and go

That a virtual friend

Would be as real as one I have known.

For although face to face

Is the best way by far

To carry the love, the tears

The joys from here to thar-

Then if life doesn’t work

Like the norm as it does for me

I am glad there are others

To be your hands and feet.

The Lord counts each of us

His friends though He is not here

No longer flesh but in Spirit

And He will always be near.

Perhaps it’s nearly the same

With my friends when housebound

That chat via Facebook or Skype

Is messaging as if hanging around.

Who cares what we wear

Or go when together my dear

My ‘Droid knows you’re there

And I’ll always for you be near.

Like a brother, like a sister

A cyber-version of sorts

I am grateful just the same

When life is a bite in the shorts.

Thank you for being

Out there and in my heart

Drop me a line sometime soon

In turn I will do my part.

We’ll help each other along

To get through this life

Having travelled the world

Sometimes all in one night!

This little ditty now ends

Godspeed and blessings galore

For the people we both meet

Adds life to our adventure and more.

With love,

JJ

 

Treatment Update

outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter.  If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down.  But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied.  Ha!  I would love for my personal scale of symptoms to be at zero.  I would love for the intangibles wreaking havoc in my life to be less than nothing as well.  But that is just not how it is.  This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day.  That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity:  about 3 days each week.  That stinks.  I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living.  Steve had to physically care for me (from toileting to feeding) about four times each week.  This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens.  An occasional meal out with Steve has ceased.  There even was a blow-up with my Doc in which he suggested I might work with someone else.  He admitted that he doesn’t know what to do.  Fine.  But who else would that be?

So here is my status:

  • Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well.  Flare of systemic Candida is one possibility.
  • Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
  • Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
  • Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
  • Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
  • Social isolation continues to be a problem.  I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
  • An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive.  There are often episodes after eating and I do not know why.
  • Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome.  I bring my own sheets and graciously they avoid fragrances around me.  They are saints!
  • Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days.  Recent exceptions:  two wakes!
  • Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
  • Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile.  Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well!  Oy vey.

So now my pity party is over and I have nothing left to say.  I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle.  Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief.  My husband Steve carries the burden of all of this in his own way.  He is a saint and my hero.  Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going.  Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes.  Yeah God.  However I am very stressed about the upcoming holidays.  Maybe there will be a “Christmas miracle” at our house too?  Lord willing, the numbers in my life will improve in a positive direction.  In the meantime I will be hanging tough.  It’s the best I can do.  JJ

senior numbers

They came, they went, and life goes on

Here is the reason that living in the moment is so very important:  the good ones soften the others!

I am so grateful for the first meeting of our church home group that met this evening.  Steve and I volunteered to host a group to try to break up the isolation that I have experienced since becoming more homebound these past two years.  Sometime in the early Spring of last year I made the difficult decision to stop attending worship services because the building is water-damaged (WDB).  Every time I was inside the structure for Sunday worship or an event, I paid dearly with violent seizure attacks.  The kind that are triggered by mold ramp up quickly.  Most of the time I was barely able to make it back to our car before the shaking began and it quickly became convulsions one seated inside.  A perfect electrical storm let loose inside my head.  Gratefully they did not last for more than 30 minutes most of the time.  However afterwards I was beat up with a sharp headache, profound fatigue, ringing in my ears, increased upper body pain, and emotional devastation for hours thereafter.  To suffer like that was not what the Lord has called me to do . . .

Thus began my practice of listening to our pastor’s messages at home on the internet.  Thus became me living my Christian fellowship through Steve as he would attend two services per week in addition to the men’s prayer breakfast on Saturday.  He came home each of these days and shared a detailed review of Pastor Paul’s verse-by-verse teaching of the Old and New Testaments in addition to updates on our church family members.  I felt humbled and sad when he would tell me of individuals who had asked about me.  This was a mixed blessing.  I appreciate others asking and praying for me.  Rarely did anyone contact me thereafter.  Such is the nature of things in contemporary America.

One couple couldn’t make the meeting tonight as the wife was having medical tests and likely being admitted to the hospital.  Yipes!  We prayed for Ellen and hope that she recovers soon.  Our group was small yet the fellowship was rich.  I stressed about getting everything ready before 7:00 p.m. as my medical-day ended at 5:20 p.m.  That barely left enough time to shower, clean, and prepare snacks before my husband came home.  Everything came together shortly after our guests arrived; it always does.  Our group conversation was meaningful and even personal for our first time together, discussing John 18 that was preached this past Sunday.  Before we knew it the evening was over.  Before I knew it the evening noxious episode that awaits me around 10:00 p.m. was set to begin, following me late into the night.

And so it goes.  Life goes on.  Now I’m awake at 4:00 a.m. recapping the night:  at least once per month I’ll get to break bread with my brothers and sisters in Christ during our home group.  This is good.  I am glad and it was worth the wait.  :J