Tag: Christian

O.B. Panties and an HGTV Hangover

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Are you going to love it or list it?  Are you ready to see your fixer upper?  I just don’t think this kitchen is big enough for me!  This will all have to be torn out and redone!

And so goes the thoughts in my head the day after being discharged from the hospital.   Since cable TV was my only steady friend and we don’t have cable TV at home, we got really well acquainted in the past 3 days.  I am convinced now that the wood floors in our home are stunning and that we can stay put for awhile longer.  Wood floors are on-trend these days dontcha know?

I also learned that O.B. elastic panties secure blankets over hospital bedrails really well!   When you are on “Fall Precautions” and have a history of seizures, they pad the bedrails with them.  The only problem is that I am sure that wrapping blankets over metal bed rails hardly meets JCAHO requirements for prevention of injury!  They outta have provided bed pads.  Oh well.  Welcome to the modern hospital complete with a 20+ year old hammock sling for a mattress.  Otherwise, the food filled my belly and care was alright.

I was in the hospital after an urgent trip to the Rapid Care Clinic associated with my doctor’s office sent me there on Sunday.  The Internal Medicine Doc said I could get an evaluation from an Infectious Disease Specialist there (which I was later promised in the ER as well).  That never happened.  What did happen was getting pumped with a plethora of drugs that created nausea for the first day and one-half, exhaustion from side effects and lack of sleep, weight gain from 4,000 cc of fluid and food-snacks-with-every-drug-to-protect-my-tummy, and a lesson in humility.

Regarding the latter, I learned that Nurse Practitioners and Physician’s Assistants run the modern hospital in America these days.  Or at least they do for what happens bedside.  I saw both types of professionals; they got to talk to the Infectious Disease Doc but I did not.  Turns out that my acute case of shingles had been seen before so they treated me “by the book.”  Never mind my history of daily seizures and concern for the brain-swelling complications that can come with the worst cases of shingles:  a disaster potential which could change my life even further, forever.  Thank you Lord that I had called the Ophthalmologist on-call the night before and gotten the treatment needed to protect my eyes from the herpes zoster virus.  It is through the blurry vision of an eye ointment that I chat with you today!  The hospitalists never mentioned protecting my eyes from the spread of this nasty, searingly painful viral infection . . .

So I did my time, got my drugs, stabilized a good part of the intractable pain, and got sent home with:  red lesions and swelling on the right side of my face, a 4th day of constipation, lots of prescriptions for drugs and OTC meds, and a renewed sense of what it means to NOT be in charge of your own life, your own healthcare.  I did get to ask questions and for that I am grateful.  I did receive my Lyme infusions of antibiotics before I left to continue that part of my treatment and for that I am grateful.  I tolerated a peripheral line for 3 days without skin irritation and for that I was amazingly grateful.  I did catch up on HGTV enough to last me a good long while and for that I am grateful.  And I was reasonably able to tolerate a modified, hybrid version of my diet from the hospital menu and for that I am grateful.  I was alone for those 3 days and 2 nights yet my Heavenly Husband was always present and for that I am grateful.

There are two other tidbits to note:  I met a lady while walking the halls who was in the hospital for pneumonia.  She’s a smoker and familiar with Jesus Christ whose birth we celebrate at Christmas.  I shared with her a short testimony of how the Lord appeared to be orchestrating the meds I was given during that hospital stay to possibly treat the serious seizures I have been suffering for 5 years.  Please join me in praying that the person of Jesus Christ would become real for her as well:  as her personal Savior this Christmas.

My second point was hidden in the first noted above.  Did ya catch it?  Yes, I have not had a seizure since coming home from the hospital and had WAAAY FEWER since taking Neurontin in the hospital.  Neurontin is not typically given for Non-epileptic seizure episodes but hey, it is commonly indicated for shingles.  Win-win?  I am hopeful.  What if these 5 years of suffering daily episodes are about to end?  It is too soon to tell how this will proceed going forward yet I am grateful for my little Christmas week reprieve for sure!

Merry Christmas to you, Gentle Reader.  Be sure to check out the Christmas Letter from Steve and me posted today as well.  Even in the dark times there is hope since the Light of the World has come as the person of Jesus Christ.  Oh I do hope that you will share with me in knowing this joy today!

And keep an eye on your panties, eh?  JJ

maternity, pregnancy, other uses, panties, underwear, adapted, stretch

 

A Tale of 2 Gregs

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One made the bag, the other got it in me

The latter carried me for a time, the former will see me from beginning to end.

Both attend to excruciating detail

Their work as professional as it can be:  an example for all who deal in potions for the cure.

The one is seeking her Lord

Whilst the other follows Christ with family, with livelihood reflective of the same over time.

I never knew how this journey would go

And the people, places, and things that would come near for having been allowed this path.

But I must say parts have been worth it

Having known you two has taught me much about life, about overcoming, about getting up each and every day.

So today when your worlds collided over me

I felt humbled at your care, expertise, and willingness to make a difference in my recovery.

Thank you for being on my team

These infusions of life-giving waters will make a difference one day for sure.

Until then carry on dear providers

Your work goes beyond sharing 4 letters of your names to hope beyond this day for sure.

 

You rock!  JJ

Not just another day

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In this moment I feel quite normal.  I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off.  You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched hellish experiences of mine have become a normal occurrence around here?  Here’s what I mean:

  • Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
  • Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
  • Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
  • My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
  • Expenses beyond belief take away tremendous resources intended for the future:  a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
  • Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day.  I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes.  This past weekend I missed the lovely snow softly falling outside our bedroom window:  our first major snowfall in the Midwest.  I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow!  If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks.  Those episodes with respective recovery periods totaled about 15 hours today alone.  Lord have mercy!

This is no where near normal.  Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy.  I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic.  One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday.  Somehow I did get some Christmas cards ready-to-go however!  Wow.  That is simply amazing.

Please forgive me that my tone is angry tonight.  I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me.  There are new problems with which to contend.  Tonight I am in survival mode.  It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning:  an expensive treatment of merit I seriously question.  Chronic Lyme disease?  Heavy metal toxicity?  Which one is it already?!  Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago?  Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . .  At least my back is feeling some better though.  Hooray!

So here’s to Christmas cards getting together and less back pain.  I have a roof over my head and food in the frig to munch on shortly.  My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so.  Well there ya go.  Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader.  Thank you.  Here’s a cartoon for you.  You rock!  JJ

bedbugs

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Slow But Sure

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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)

3 Your beauty should not come from outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes. 4 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

sunglasses, hiding, worth in Christ, Christian, woman, identity, self worth, self esteem, illness, disability, overcoming, recovery, getting well

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I Survived

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

aliens, survived, lousy t-shirt, survival, trials, suffering, overcoming, Christian, endurance

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)

4 ‘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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