Time to focus

Sick and tired of being the same

I digress into another rant . . . or shall I?

Would that honor the Lord who has sustained

Delivered me from near-death and brought me to you?

Oh if there could just be a happy ending already my dear

Would I still angst over my words or lightly dance over the keys?

These are questions that will not be answered this night or even the next

As my beloved returns home to my side from his travels, refreshed from lack o’ drama.

I must find some joy to carry me out of this funk for the path to recovery is becoming clearer

Glimpses of what may be come through the struggles amuck and late night appointments with my Doctor who works too much.

But is it more than I, just wanting to be well?  I think not for the rewards for victims are slim:  our fellowship better not be tainted by our woes!

Would you and I be friends if it weren’t for our life paths diverted?  Probably not so let’s not spend time there, just trust we were meant to be here now.

And I thank you for carrying me when I could not stand, liking my words when their worth eluded me in the dim of night, listening when most were asleep.

It is time to focus on the prize coming into view:  this possible final leg of the race that will take all my strength as Mr. Herx clears the debris that soured my inner places.

I might just win.  This life season just might end.  Stay tuned, Gentle Reader.  Please pray and I will do the same.  Of course you know me all too well:  I’ll be sure to letcha know…  JJ

Binoculars, garden, view, focus, Christian, birdbath, flowers, iris, landscape, trees, scene

 

The Medicine Cabinet

Pray tell how much do you think I can hold

In my shelves bursting forth from the orders?

“Try this, take that, or Google the one I heard about”

Becomes license for judgement once thought to be clinical.

Not learned in school but that of “hard knocks”

The ideas flow too simply during paid consultations

Such is the life of a lab rat in the cauldron of illness

Where test results get mixed with expensive remedies.

So I look up interactions online thanks to drugs.com

Although many will be borne out of a bad trip on a Tuesday

When I try your best guess out of desperation, my last dime

And occasionally find relief or find hope a fraction of the time.

“I’ll take it,” I say under my breath as a new protocol prints out

My medicine chest overfloweth, my fingers sore from researching

Til someday the Lord crafts a breakthrough I shall not give up:

For the Great Physician love me more than this infirmity for sure.

Just look up, look out Gentle Reader if you suffer along too

Have I not commanded you? Be strong and courageous.

Do not be afraid; do not be discouraged,

for the LORD your God will be with you wherever you go.

Proverbs,4:22, medicine cabinet, God's word, Bible, the word medicine, hope, healing, Great Physician

Keep your eye on the ball

I remember hearing this advice when being introduced to softball as a girl.  It didn’t help my game much then but it does now!

Navigating the healthcare system when battling a serious illness requires patience, persistence, and push. (Now that motto DID help me when swimming my 1/2 miler!)  You are your own case manager, not your Doctor.  Getting this fact into perspective quickly was required for me to endure nearly five years of a long and winding road that first appeared to lead to no where.  I am still sick but some things are markedly better.  More about that fills the pages of this blog.  Now back to the brain dump that comprises the topic at hand . . .

  • Getting labs written and drawn for treatment coordinated between 3 healthcare providers and their respective offices has required hours of work this past week.  At this time we are good to go for everything to come together tomorrow.  It is no small matter to have to drive to my primary Doctor’s medical office to obtain the corrected piece of paper then scan and email it to the office of my home infusion nurse.  (Two phone calls confirmed that an incomplete copy was faxed to her agency 2 days ago.)  These results will be valuable for my appointment with the naturopath in about 3 weeks via Skype.  Gotter done.
  • Researching a new theory about a latent infection that may be contributing to this illness has become a new project.  I will allow several weeks for all parties to review my report and, if appropriate, order, interpret, and advise on the laboratory testing that would follow.  This process should take over a month.  Meanwhile the wretched illness continues.  Gotter started.
  • Adjustments in my treatment protocol above the core prescriptions, occur on nearly a daily basis led by what I can tolerate at any given time.  Detox remedies get rotated and new treatments that are prescribed take weeks to fine tune, if tolerated at all.  Beginning a new treatment often takes several weeks by the time I find it either online, order it from one of 3 compounding pharmacies (locally and across the country), correct mistakes made about 20% of the time, and find the best timing to work with the rest of my treatment plan.  Prayer helps a lot.  Just started something that I ordered almost 3 weeks ago.  Parts 2 and 3 are still pending.  Oh well.  Gotter in.
  • Not all the testing that is recommended needs to be done RIGHT NOW.  After hearing back rather quickly from my naturopath about my concern that I might be dealing with a latent toxoplasmosis infection, he recommended 2 new lab tests.  One would cost over $900 out of pocket and the other would likely be covered by insurance; both cover important yet different aspects of my care.  But hey, if we figure out what infection is causing my symptoms and kill it then I won’t need to know how it is affecting trafficking of various neurotransmitters.  The problem will already be solved!  I made the decision; the next steps are in play including copying my primary Doctor on everything.  (His email system failed so I drove my report to the office today.)  Getting her moving forward.
  • Behind the scenes, the ordering, billing, organizing, preparing, and administration of IV infusions-with-related-supplies continues.  I had a question after reviewing the mighty bill from my home infusion company.  I thought they may have over-billed me 15.75 hours at the cost of $945 (which equals the cost of 2 weeks of nursing care!).  They billed me one way at the Start of Care and another way the subsequent weeks.  Over the course of 2 weeks of various chats with my home infusion nurse and 3 staff at the agency, it turns out that we both misinterpreted our initial  agreement:  the written contracts have blank spaces.  They have chosen to bill me at a lesser rate given that their billing methods changed in January of this year and prior to my Start of Care with them.  The savings to me and my husband will be substantial.  Gotter blessing!
  • Sometimes supplies get sent with errors.  This happened twice this past week.  Gratefully I have come to trust the overall process and not worry about some delays too much.  In one example, it actually hurt less to use a smaller gauge Huber needle to access my port when it was sent by accident.  The infusion did not take that much longer so my nurse and I agreed to continue using the one sent by mistake.  We tried this in the beginning and did not have this good of a result.  Flash forward 3 months.  Yellow is my new color instead of white or red!  Gotter figured out!
  • So who is minding the hen house?  All of these exhausting details?  This serious illness I am battling includes chronic Lyme disease but who is tracking my progress after 6 months of IV infusions of antibiotics?  The last appointment with my LLMD focused on other labs instead of ones related to the co-infections of Lyme disease.  Geez oh man!  I should be ready to focus on the co-infections Lyme by now since there is still one major problem to solve:  the convulsive episodes at night and in the morning have not stopped yet.  WHO CARES ABOUT THE OTHER LABS?  The LLMD says that the updated and gold standard, Igenex lab results have not come into their office yet.  Alright so we wait.  Then as I was checking out with the nurse after my appointment my LLMD handed me a piece of paper upon which was written the name and brand name of an herbal tincture to add next for Babesia (a co-infection).  He says it will help with the symptom of night sweats and yes he put it on my clinical report sometime after he had left the room.  I guess I will figure out where to order it from, the dosing, and the schedule.  No problemmo.  Got this one in the bag so to speak like so many others.

Surely I am a “problem child” of sorts for some of my healthcare practitioners.  My condition, orders, and treatment are not written verbatim in any text book.  Is that not the joy and challenge of practicing medicine?  Especially when your client is paying you CASH?  An informed patient partnering in her care is your best patient, right?  I try to be nice about everything and express gratitude for their care.  However it is with respect that I say in my heart that dear practitioner, ultimately “you are not the one in charge of my care.”  My Jesus is!  And under His guidance, I am!  My husband and spiritual leader has much to say in this journey as well!  We are in this together for better, for worse right?  Indeed!

Know what I mean Gentle Reader?  Have you ever gotten a little crazy managing the details of your care or the care of a loved one?  Even the insurance company who holds the purse strings of coverage for services rendered are not in charge of what happens to each of us. Thank goodness as I have to deal with 2 of them!  So for those in Christ Jesus, in the end finding the best care, the best outcomes require us keeping our eye on the ball as unto the Lord and His will for our lives.

Perhaps that bears repeating, IMHO:

The best care requires us keeping our eye on the ball as unto the Lord and His will for our lives.

Maybe a new title is in order here:  Keep your eye on the Lord.  Always.  As it says in Psalm 55:22:

Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.

I believe it is the Lord who gave me the ability to search, to research, to write, to endure, to overcome the trials he has ordained in my life for His glory, for my highest good.  Lord willing together we are getting it done well.  What do you think?   JJ

1 Peter 4:13, glory, Lord, trials, overcomer, trust, endurance, fiery

 

 

Weary from the road

Christmas chocolate.small

“They say no pain no gain

I say roses are worth the rain!”

Or so the song went that I wrote back then

When “recovery” seemed like something I could attain.

Decades later I realized the wisdom of Robert Hasting’s Station

A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’

Too bad life is often not like that:  the good, the bad, the ugly all take their turn

You never really know what you are going to get when your head lifts from the pillow at dawn.

And so goes my new treatment when things have gotten worse before getting better,

How is this even possible when it appeared the Lord orchestrated these steps to the letter.

Now faith means holding on to that which is unseen for the promise of my Lord’s Day

When the suffering will end, be redeemed for glory whether it comes soon or some other way.

I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–

With love in his eyes, his heart he prayed for healing and more once again like so many times before.

We know our Lord hears us and that we have His will, His heart within our own

I just pray I can hang on this weary road that seems to have gone on just too long.

[Please send chocolate . . . pure unsweetened cocoa butter works best right now.  JJ]

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

My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”  Revelation 21:4  Somehow, someway, I am going to make it, Gentle Reader!

How do you measure a year?

September 18, 2014 was a day when I rediscovered the power of friendship at a new level.  ‘Tis fitting that we would spend our time reading the Psalms as we shared our lives with each other then tenderly prayed together.  Perhaps this is what women who love the Lord Jesus Christ do, eh?  Except that we were not meeting for a weekly video Bible study at church followed by coffee and treats.  This one touched our hearts more at home . . . literally!

In the past I have enjoyed Bible studies the best when we all meet in each other’s homes.  There is no better way to fellowship than to be immersed in the family pictures, dog hair, and dirty dishes of the ones you come to love in Christ.  In due time the host and hostess let go of having a clean house for everyone each week as we focus on what is really important:  opening up the truth of God’s word.  Prayer time was always my favorite.  The bonds between us became palpable as we lifted up each other’s hurts and victories before the Lord.  I do hope we glorified Him in doing so.

When serious illness struck my life October 11, 2011 my life slowly changed to one of almost total isolation.  Oh there were many visits to medical professionals, clinics, labs, hospitals, and pharmacies.  They were all very nice people, of course.  Going to Walmart became a rare “date night” with my beloved husband when I could not drive myself.  The highlight of my week often became buying groceries; somehow I ended up spending a little more money there than I probably should have perhaps in an attempt to find some alternative type of comfort.  Somehow new pair of sweats or comfy top would jump into the shopping cart on occasion as well!

Then the Lord inspired me to break the isolation beyond this blog.  I had some casual connections to a few of you Gentle Readers which delighted my soul, by the way.  How could this become more personal?  I published a blog in September of 2014 asking if anyone would be interested in starting up a Bible study/prayer time via Skype?  Perhaps there were other gals out there who were largely homebound like me and ready to connect before the Lord’s table.  Two gals graciously responded:  YES!

Each of us had different reasons for coming together.  Each of us had our own blogs and followings, outside interests, and experiences with our health.  We represented 3 different decades of life, 2 different countries and States, living situations either outside larger cities or in the country, and only one blonde.  (She is gonna kill me for writing that!)  We bonded quickly.

One gal who joined our group to be an encourager ended up facing one of the biggest health battles of her life this past year.  Two of us went in and out of relapses with illness and one endured a major upheaval in her husband’s job situation.  Two of us have also met face-to-face twice with hopes of a giggly reunion of all three of us perhaps this year?  I hope so!  Together we (have) cried, we laughed.  We prayed; we shared silly stories.  There were exchanges of recipes, websites, scripture, and more. We were encouraged by the love stories of the Psalms ministering to our feminine hearts.  And most of all we became friends.

So how do you measure the value of a year in life?  As this passionate theme song from the movie Rent speaks of sunsets, cups of coffee, laughter, and sighs, I do know that on Thursday night we three have shared them all this past year.  I agree with the chorus line to:  measure your life in love.  Because of you my dear ones, my year was richly blessed!

Thank you ladies for changing my life and ministering to me in a way that has made a difference.  May the Lord be glorified in all that we say and do, all that we write, and in the prayers that we lay before His throne of grace each week.  In the meantime,

“I am going to Rome.”

You two know what that means!  Happy one year anniversary!

Seeya next time ladies.  Love you, Julie