Slow But Sure

What will it feel like to be almost normal again?

Will the days fill with meaning, the nights rest with pleasure?

Alas I know not what tomorrow will bring —

So it’s it will be in the smaller moments that I will define who I am, who I will be.

At least as long as it is up to me . . . and little is of course . . .

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An important decision came to me today that surprised me.  Oh there were the impossible ones that came in the hours beforehand which could be the subject of a tragic drama-blog here (ie. how to handle the seizure attacks overnight, sleep deprivation, heavy burdens, pain) but all that changed when I was catapulted awake at 8:17 a.m.  Could I make it to that appointment after all to the eye doctor?  They didn’t really cancel my appointment from that frantic message I left at 4:57 in the morning did they?  Well I was about to find out!

I pulled on some clothes; rushed back and forth throughout our humble abode; threw together the records, food, and drink I had loosely assembled the night before; and was practically out the door before my hubby emerged from shaving in the bathroom!  I’ll call the office on the way, I thought to myself.  And lucky for me my appointment time was still open for 8:45 a.m.  Holy cow.

Lord only knows how I function on days like these.  The headache pressed sharply into my skull with the plethora of medical testing and related tasks that fill my very full (medical) “work days” lately.  (That is a story for another time!)  Diarrhea delayed the first few steps of my eye exam as the technicians escorted me to rooms with various equipment, administered those dilating drops, etc.  So now my vision had become as blurry as my mental status.  Neat huh?  Sish.  Soon it was time to make some decisions about contact lenses and the potential replacement of eyeglasses.  Three years had passed since my last exam.  Clearly vision care has not been my priority of late!

I don’t even know her name yet her face will be memorable for many weeks to come.  The Optician in the big room with all those designer frames was an older lady with exquisite taste, professional temperament, mastery of her craft.  She quickly knew that I would benefit from some coaching in my selections and did so with style and grace.  I liked her eyeglasses, Silhouettes she called them, and decided it could be a new style that would work for me.  But was I ready for it?  Suddenly I realized that I was deciding about more than a functional facial dressing . . . no, I was crafting what presentation did I really want to make with my eyes, my facial expression to the world these days?

Makeup doesn’t work for me most of the time.  I do keep my hair colored and trimmed fairly regularly, styled about half of the time.  My clothing is rather casual favoring comfort not the fashion trends of the last decade.  Rarely do I adorn jewelry even though I had my own business making and selling colorful macramé jewelry for almost 3 years. My face has aged considerably.  The summer tan has faded.  I no longer wear contact lenses which used to give others direct visual access to my eyes, my soul.  My current eyeglasses with red and black frames are my only adornment, providing a little bit of covering behind which I can hide.

Soon I excused myself to the bathroom yet another time for a little moment of reflection.  Would I choose a new style behind which to mask my true self a little longer?  Yes it really does feel like that.  Would it be frames where the focus is on the shiny rhinestones or metallic finishes instead of the tender woman peering out from behind them?  Only after a few tears later did my choice become clear.  I selected the ones like those my teacher was wearing today.  Kind of like I did with Mrs. Heitkamp back in the 5th grade.  (Oh how I loved her so!)

Far be it from me to miss a moment where I can slowly but surely find a little extra meaning in what is happening and move forward too.  I really do want to be well some day and by golly I hope that my attention to the little things will help me to get ready for that day.  It’s just a pair of eyeglasses right?  Maybe so.  Behind them this time will be a little more of me and a little less of something else blocking the view of the woman inside coming back into view.

1 Peter 3:3-4 New International Version (NIV)

Your beauty should not come from outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes. Rather, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.

If you are in a battle right now too, Gentle Reader, please do not lose hope.  Please don’t hide.  Our Lord Jesus Christ yearns for fellowship with each of us as He dresses the heart, infuses the spirit, loves the broken, and leads us to His throne of grace full of splendor beyond compare.  We are beautiful in His sight!  One day I pray that we will see these truths ever so clearly as the pains of this world give way to His richest glory forevermore.

And for that we are definitely going to need sunglasses, eh?  JJ

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I Survived

I survived.  A little traumatized, perhaps, nonetheless I survived.

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Medical testing needs to advance to the level of the scanner once flashed on classic episodes of Star Trek.  You know:  the kind where the Doc runs a device much like the handheld bar code readers of today up and down all the areas of your body that are amiss.  Sure would save a bit o’ grief, a bit o’ money too.

Poop and pee tests are gross.  So was the Lasix Renal Scan for me this past week when I decided NOT to be catheterized.  Eeeeek!  Jared, the nuclear radiology technician, was as nice as he could be and even said that I “looked fit!”  How sweet!  But inside this frail frame of mine are weak bones and an aching backside/kidney area for largely unknown reasons.  I am sad.  Just when I thought that a myriad of toxicities and stealth infections were my worst nightmare, it turns out that there are other complexities to explain why I feel so unwell.  But hey, the Lord still appears to be orchestrating a mysterious journey through it all.  And I lived through this last event to tell my story . . . again!

I’ll bet that Joseph as described in the book of Genesis knew everything there was to know about “survival.”  Sold into slavery then rising to be the head of the Pharaoh’s (President’s) household was cast into a dungeon for years when falsely accused.  He still acted righteously over and over again only to be forgotten until one day vindicated; he praised the Lord for the marvelous goodness that would come after his years of suffering.  Joseph is a model for  me of what it means to be a faithful steward of the experiences God allowed in his life.  He did not lose heart, he kept going despite severe trials then gave glory to the Lord when good things happened.  I want to be like Joseph.  His words to his brothers who had started his torment were:

Genesis 50:20New International Version (NIV)

20 You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

And the Lord’s promise to His children are that one day:

Revelation 21:4 New International Version (NIV)

‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

I hope that someday my lessons from life will be centered more on the wonders of God’s creation in my garden and such than the saga of enduring a serious illness.  Until that day I will not lose heart.  Please don’t you lose heart either, Gentle Reader.  God is still on the throne and will make “beauty from (our) ashes” one day.  (They will be called oaks of righteousness, a planting of the Lord for the display of his splendor!  Isaiah 61:3)  Until then let’s look to the face of Jesus Christ who has promised to make all things new one day, one day soon.  Truly this is our source of “hope beyond,” no?  JJ

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What did you learn today?

And let ours also learn to maintain good works for necessary uses, that they be not unfruitful.  Titus 3:14

I learned today that it pays to take good notes.  When I had to replace a healthcare supplier within a few days (or lose my mind!), I was glad to find my notes from the research that I did at the beginning of receiving home infusions 7 months ago.  Perhaps back then I should have gone with that other company instead?  Oh well.  I got to work with their Patient Care Coordinator this time and she is wonderful!

I learned this past week how being off from work and  having less income has helped me to find inexpensive continuing education credits that I never knew existed before I got sick.  Looks like NINE of the TWELVE hours required will be FREE!  Yeah God!  I will be able to keep my occupational therapy license one more year!

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I learned this past month a deeper definition of true love as demonstrated in the life of my husband, Steve.  First some background:  we had to cancel a trip to see his family this past summer when his dad was in too much back pain to travel cross-country to our rendezvous point in Branson, Missouri.  His mom was disappointed that the celebration of her 80th birthday was postponed until Thanksgiving.  Then our trip to meet up with his family in Texas in November got cancelled when I landed in the Emergency Room five days before departure with severe back pain.   I wasn’t even able to go out to dinner with Steve on Thanksgiving (which means I missed celebrating our wedding anniversary on the same day!).  As you saw from my last blog, Steve’s response was simply that we were, “saving money left and right!”  Well, yes and well, no.  His parents are aging.  Visiting them at their home in California is complicated due to my extreme sensitivities.  Perhaps Steve will be making a visit early next year and when my health is more stable.  In the meantime he just continues to be a wonderful loving husband.  I am so grateful for his love and devotion.  Often he is my “Jesus with skin on.”

I learned this past year the meaning of the phrase Carpe diem.  Each little trip, each tender moment between Steve and I, each time the garden got watered or weeds got pulled were realizations of moments when I could do a little more.  The numerous moments that were quite opposite just made “seizing the day,” more special.  We have learned to be more spontaneous to enjoy the good graces of the Lord even when they last but an hour or two.  Carpe diem baby!

I learned these past 5 years of serious illness to call upon the Lord for everything.

Proverbs 3:5-6 New International Version (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

Whether it’s finding the money for medical treatments or getting myself up to go to the bathroom when seizing, my Lord and Savior cares for the details of my life and gets it done.  He is there when I am awake in the middle of the night.  He provided that relic airplane for me to sit under on a sweltering summer day so my husband could fulfill a dream at Oshkosh.  My Jesus will be joining us in celebration when I become well again someday too.

And lastly, I have loved learning the value of writing Hope Beyond.  It’s not quite an online journal but a way of looking from the inside out.  I hope to point you, precious Gentle Reader, to more than the saga of my situation but to the glory that awaits both of us when we place our trust in the Lord, Jesus Christ.  As Steve and I say in our Christmas letter this year:

No matter what our perspective may be, the most important view at Christmas (or anytime) is the one that brings us closer to the person of Jesus Christ. We stand in awe of His sacrifice for us that brings unspeakable joy, knowing Him as Lord and Savior over all.  He loves His own more than words can say:  the best Christmas gift of all.

Going beyond our temporal learning to the eternal love of Christ can be our gift today, next month, next year, 5 years from now, and beyond.

Gentle Reader, what do you say that you have learned?  Please let me know, k?  JJ

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Gratitude for the little big things

So it’s Thanksgiving and nothing went as we had hoped: our trip to Texas to be with my hubby’s family got cancelled after my recent ER visit with severe back pain, alternate plans never materialized, and we had to cancel dinner reservations for tonight due to seizure spikes for most of the afternoon. Today is our wedding anniversary too. When I apologized for wreaking havoc on my hubby’s holiday, his response was, “well we’re saving money left and right!” And now you see who I am so thankful for this holiday.

I love you Steve.  Happy anniversary!

And Godspeed Gentle Readerfb_img_1480031316027. :J

The way it should be

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ

 

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