Hydration is Key

dehydrationHydration is key in health and down to the other

It makes everything better from one end to the other.

When I thought a drug might be my saving grace

I found that it was water that was my Lord’s gift of grace.

In 3 days and 2 nights 4,000 ml ran through my veins

In addition to many drugs in my tummy not my veins.

There was sparing of upsets from what I could not tolerate before

That number of drugs with Pepcid became my friend now like never b—–.

My Lord knew then showed my naturopathic Doc a few days later

That I would need to push fluids like never before for now and onto “later.”

So Smart Water and minerals in our Big Berkey will be my constant friend

When isolation of this Shingled hell keeps me from family and friends.

The Lord makes up the difference (as He always has) and grants me sleep

These last few days have been for rest and recovery and the deepest of sleep —

“To die, to sleep – to sleep, perchance to dream – ay, there’s the rub, for in this sleep of death what dreams may come…”

Hamlet does question if even death will bring dreams that will prevent peace when it comes.

But he is wrong for peace is granted here and now for those who believe no matter what may

For those who believe in the Lord who conquered death and knows the beginning from what may.

So once again, a thousand times I shall again proclaim

Alone in my Jesus I will drink the victory only He can proclaim!

************

If you are struggling this night, Gentle Reader, please hang in there.  Let me know your needs and I promise to pray as I lay your alms before our mighty Lord of Lords.  He cares for you, He cares for me.  And Lord willing, we are going to get well sometime between now and the day of His return.  Oh how I do hope you know Him this way?  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

Oh What A Night

What a date we had tonight.

Dinner:  Parkview Hospital 24-hour grill.

Movie:  HGTV on the ER Suite flat screen.

Drinks:  Bottled beverages and 1114 cc fluids for me.

And a whole lot of shaking going on:  3 hours of seizure attacks, non-stop.

It’s as I have heard it said that life is either a daring adventure or nothing at all.

I am feeling much better now.  I love IV fluids!  (Weird, I know.)

We are sleepy!