Tag: overcome

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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Keep your eye on the ball

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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

 

 

What could be better than that?

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Tonight on Facebook I got a real education.

I learned that naturopathic doctors are getting murdered by the pharmaceutical giants and that chemotherapy never works.  Obamacare may be exposed for what it really is and I can sign a petition  with a few strokes and clicks to make everything all right again.

I learned that the media says that Clinton is leading Trump in (crafted?) “polls” and that extremist demonstrators stabbed a bunch of people while I baked cookies on a beautiful night.

I learned that all I have to do to clean my colon is to drink a blueberry concoction and that the sunset over our town was a blessing from God.

I learned that the USA should withdraw from the United Nations now that the UK has withdrawn from the EU but the vote may be reconsidered too.

I learned whose family did what this weekend, the anniversaries that were celebrated, and the babies-n-pets who have done the cutest things lately.

I learned that those with chronic illness, chronic pain, chronic fatigue, and the like are still suffering out there making me really sad.

I learned some cute slogans to remember with some attached to Bible references and cool photos.  Are they be real or photo shopped?

I learned who is selling what, whose stuff is still cool to look at, and what stuff we should all win/buy/enjoy before we die.

I learned about the upcoming webinars that will cure this or that, make fat melt away, or make my business succeed if I really tried hard enough to win!

I learned how to waste just under an hour pouring into the what-you-can-see lives of others and the social media marketers of fairy tale realities, stuff, skills I need, emoticons, or whatever advertisements to distract me from living my own life.

I learned that God is more popular than Jesus . . . as a matter of fact I did not see the name Jesus Christ mentioned at all.

Most of all I learned that my daytime spent sick in bed was probably still better than the mindless, numbing, lying, evil crap that often goes on in the world around me and gets posted on Facebook.  So please send me pictures of puppies and maybe a cute kid or penguin.  Scripture rocks too.  The rest is quite meaningless.

We’ll see if tomorrow on Facebook is any better?  (I never learn!)  JJ

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The liver that got away

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Roger looked more like a tall, lanky college student than a young adult with schizophrenia.  He was also smart:  well-studied as if to be a medical school student long before the days where WebMD could make the rest of us stand out from our peers on a particular topic of interest.  There was one problem with Roger’s course of study, however.  I met him shortly after what could have been his second fatal mistake.

Roger believed that removal of his liver would cure his schizophrenia.  Yes, truly, and he would talk about it with a straight face in earnest to his psychiatrist.  Roger had poured over medical books, secured all the tools and supplies of a typical surgical suite, and attempted a procedure at home in the past.  When he could not control the bleeding at some point during the procedure he called the paramedics and was rushed to a local hospital.  They patched him up and transferred him to the mental health unit where he stayed until his psychiatric medication could be “adjusted.”

Within a short time after discharge Roger re-doubled his efforts.  He gathered more supplies for a second attempt at a total liver resection.  Somehow he never read that the liver is a vital organ and that he would die if he ever succeeded.  And who knows where he found sterile drapings, forceps, lancets, and such in the days long before Amazon and Medline?  What he did not expect the second time was the intolerable pain he would experience as he got deeper into his surgery.  He was alone and got scared.  Again he called the paramedics, was hospitalized, and landed on the mental health unit.

I worked as an occupational therapist on that unit with the even lower functioning clients than Roger.  While he was not one of my patients, his notoriety was the talk of the nursing station.  What incredible bravery it would take to operate on oneself with what, a handheld mirror?  I mean, how exactly did he do it?  I think I recall that he was discharged to a residential facility after his hospital stay in an effort to preserve his life lest he make a third attempt.  The delusion that excision of his liver could cure his mental illness was simply too strong to believe that he would ever give up his theory until he died trying to make it so.

And so here I find myself four days before my own surgical procedure, banking on a theory that excision of two teeth will save my own life.  Have I too succumbed to the “Roger effect?”  When contrasted to sick thinking, we all like to think that ours is different.  After all, I have done my research and can find clinical and anecdotal evidence that what I have asked an oral surgeon to do will cure the worst of my ills.  Dr. R doesn’t agree with my suppositions (a biologic dentist did!) yet is willing to proceed to diminish years of dental pain AND after having required extraordinary precautionary measures!  Lord willing all will be completed on Thursday, March 26th:  my spirit will no longer be crushed with the virtual hell that has left me bedridden most days.  (See this blog for details: http://justjuliewrites.com/2015/03/01/only-my-potato-chips-remain-crushed-today/)

Looking back to my days working in mental health I realized that I have come a long way in my view of the world.  Today I am more willing to ask the tough questions of life than in the past.  I see that I am not so different from many of the patients who landed in a “psych ward.”  By the grace of God I did not have to be admitted or committed when my despair exceeded my ability to cope.  Somehow the Lord provided the hope, the help, the peace to carry on until the day when the pain was no longer unbearable.  Gratefully, much emotional pain has left my life for good.  Much joy has taken it’s place even in the face of this horrible illness.  My internal joy is no longer measured by my circumstances; He has allowed me to overcome immeasurable desperation.  I believe that things will begin to turnaround this week.  This week people!

If he is still alive today, I do hope that Roger has found some peace with his struggles.  Wherever you are today dear one, I pray these words from the Lord for you and your loved ones.  Sometimes letting go of that one thing that got away in our lives is the very thing that brings us to all that we seek:  the joy that passes all understanding.

John 16:33 (NIV)

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

John 16.33