I’m not going to lie

Just when you think you have figured something out, it’s really maddening to realize that there is more to know and you simply are clueless!

laxative, medical humor, gallows humor, Lyme disease, chronic lyme, catamenial seizures, non-epileptic seizures, coping with illness, chronic illness Hope Beyone

Hi, my name is Julie and I am the reluctant writer behind this blog after I got sick on October 11, 2011 and never recovered. I started my journey here online in August of 2012 after reading the blogs of 2 acquaintances. Journaling had been a life-long practice of mine, beginning with a diary that I wrote as a girl. The cover was shiny and flowery in white, pinks and reds. It had a little flap over the edge of the pages that I could lock with a tiny key. That still wasn’t enough to keep out my brother, Mike, to my horror! I don’t recall what I wrote but I do recall that he teased me mercilessly just the same. After that I got better at hiding my private things.

Flash forward many dozen years and the trend these days is to pour your heart out in a blog to the watchful eyes of the world. Just when you think that no one really cares about your stubbed toe or smashed fender, you realize that some stealth follower from another part of the world relates and responds to you in kind. I find it a kinda special occurrence and a reminder of our shared humanity. Still there are some topics better left untouched and facts left unsaid of course!

Be careful in sharing good news. If you are disabled, the government might use your day of reprieve as evidence against you that your life is restored when clearly it is not. That examiner probably won’t read the hundreds of other blog entries that describe some personal hell of one type or another. Like the convulsive episode I had this afternoon that yielded only after a prescription intervention, followed by a 5-hour nap. Or the second seizure attack a couple of hours later that yielded only after another type of remedy that actually worked this time. Thank the Lord that my beloved was home and willing to help me. I am grateful. And it all came just hours after helping our local Park while sitting here alone through the night to update their website: a good thingy!

If you happen to have dysfunctional family members or friends reading your blog then there might be entirely different consequences to complaining about blah, blah, blah over and over again. To this person I say well then don’t read my blog or (limited) Facebook posts honey! How about minding your own business a little more? Isn’t keeping a positive attitude, getting up in the morning, saving enough money in the bank for emergencies, and the like hard enough to manage these days than to meddle in someone else’s daily drama too? Do you really think I would fake this hell for self aggrandizement? I am not that kind of a sick puppy lady! You’ve got it all backwards. I’d rather remain anonymous or conversely, receive recognition for an admirable accomplishment. Like raising a rank as a Master Gardener largely from publishing our county’s newsletter in the middle of the night. Or volunteering in a public garden despite the heat exhaustion that came alongside many of the hours out there. And it all came on the hundreds of days each year when I did not have to crash back into bed, unable to function normally. Got it?

So where does a thyroid biopsy to rule out cancer fit into this muddied scenario? Will having major surgery thereafter legitimize my enduring serious illness and the varying opinions of persons on the sidelines cheering at times or throwing barbs at others? Nope. Others simply give witness to your life for the parts that he or she can see, to the extent that he or she can step outside of his or her own story. And none of us can do that fully. The peeps who truly love you will come closer to a sense of understanding. That is a gift for sure. However, it is only in a personal relationship with the Lord, Jesus Christ, in a life surrendered to Him that you will feel completely validated, loved, understood, accepted, and forgiven. He created you and ordains all that you are, what happens, when your life begins, and when your life will end. All for a purpose greater than anyone else will ever know. Lord willing, He will grant you insight into some of your life’s meaning along the journey and be merciful. He loves you so!

I’m not going to lie. Everything from what other people have thought and will think about me to questioning the Lord’s plan for my life is smeared across a messy collection of hundreds of blogs over these 8 years of chronic illness. Will it be cancer on top of everything else? Cancer: the one diagnosis that suddenly legitimizes one’s fears and suffering and need for compassion? So what. This stuff could really mess with my head. But what is really going on inside my mind? Not that much really. I feel like my Jesus is simply carrying me through it all. I feel numb inside and out. Often my thoughts are blank. When the tears come they are shallow, like a reservoir running dry after years of siphoning off for this trauma or that one. There’s not much left in my fuel tank. With no catharsis left for my angst, one might wonder who or what will nourish me now?

The answer would have to be the Lord Himself. Hold me please. I hereby place my journals, my blog, my illness, my life in your lap. Cover the Gentle Readers out there with your loving care too. Send forth your angels and Holy Spirit to care for, to guide us all. This is a tough world to live in these days. The suffering of your saints is great. We need you NOW!

Trusting Jesus

The following is an excerpt from an article entitled, “The One Who Returned Home” by Naomi Zacharias on page 14 of the recent http://www.rzim.org quarterly newsletter (Spring 2017, I believe).  She quotes a letter that recounts a story from Donald Miller’s book Blue Like Jazz, about a friend who was a Navy SEAL.  The closing remarks are from Naomi.  I hope you enjoy this piece as much as I did!  JJ

(The Navy SEAL) was performing a covert operation, freeing hostages from a dark part of the world.  When they entered the room, it was filthy and dark.  The hostages were curled up in a corner, terrified.  The SEALs initially stood at the door and called to the prisoners.  They identified themselves and asked the hostages to follow them, but the hostages wouldn’t move.  Alienated and frightened, they instead hid their eyes in fear.

This particular SEAL put down his weapon, took off his helmet, and curled up tightly next to the other hostages.  He was trying to show them he was one of them.  After meeting their eyes, the Navy SEAL whispered that they were Americans and were there to rescue them.  “Will you follow us?” he said.  The man stood to his feet.  First one prisoner did the same, then another, until all of them were willing to go.

(The person sharing this story) reminded me that Miller concluded this:  “I never liked it when the preacher said we had to follow Jesus.  Sometimes they would make him sound angry.  But I liked (this story instead).  I liked the idea of Jesus becoming man, so that we would be able to trust him, and I liked that he healed people and loved them and cared deeply about how people were feeling.”

(The storyteller) shared that it reminded her of what Jesus has been for her.  But it struck me how she has embodied this message in her ministry.  (The storyteller’s name is Analise.)

When Analise hit rock bottom, the reason she found safety in (a program called) the Word Made Flesh is because they were willing to sit in that place with her; they remember their own lostness and the mutual need for a Savior who rescues us.  He did not choose to do this in grandiose fashion.  No, he chose the utter loneliness and pain of the cross.  And so it is he who beckons us by sitting down beside us, showing us he became one of us.  He tells us he is our Savior, and he leads us home — so that we may all be the one who returned home.

Blueberries take a stroll . . .

blueberry, buckle, compote, crumble, bake, Valentines Day, special occasion, humor, funny, baking, loveI wasn’t exactly thinking of baking a blueberry dessert when the little rascals from my Big Box Store shopping extravaganza were scrambling all over our driveway the other day!  Oh dear.  My beloved will probably be reading this.  I washed them off Steve, truly I did!

Such is the caper of the rogue blueberries:  I opened the passenger side door of my truck to a splash of little purple berries spilling out onto the concrete beneath my feet.  I ended up stepping on one or two as I stepped back to figure out what had happened.  Squish!  They had rolled underneath the truck, in front of the door, all around my feet, down the driveway, and even past the sidewalk 20 feet away.  Geez oh man!  Good thing for cracks in the sidewalk or the courtyard would be a “hazy shade of Winter” too!  Maybe they wanted the freedom from their cramped clam shell cave into the cloud-covered, 30+ degree air?  I dunno.  I was getting cold so I set myself to rescue all that I could quickly without crushing them . . . two by three.  Blueberries on the loose are not easy catch you know!

Two days later I had figured out that the day AFTER Valentines Day would be a perfect occasion for putting my little treasures to good use.  I didn’t even use a recipe and yet I was able to concoct a gluten-free wonder made with a stick of butter, chopped pecans, and slightly sweetened coconut cream topping that would seem to get along well together.  Yes!  It was yummy!

So let this be a lesson for bakers everywhere.  If you want a great homemade treat for a special holiday and exceedingly wonderful someone, rough up the ingredients on the pavement first.  The beating will soften them and you just enough to get your creative juices flowing.  The delectable dessert prize surely will soothe your taste buds long enough to make you forget about your sore knees and the blue stains under your fingernails!

Your sweetie will like it too.  ;JJ

 

 

 

So much to consider

So we come to a crossroads, my beloved and I

From where will we go from here to continue my care?

No cure hath cometh from a year of killer drugs within

Five years of tortuous suffering with costs beyond compare.

We don’t know why the trauma continues to this day

Whether it will continue or end?  There are no promises

That when we show up in this life that all will be grand

But shunting the yearn for heaven my dear, the treats beyond.

Today I am tired but stable, weak but reflective

Grateful for so much while I ponder theses woes . . .

My beloved is sweeter than honey

His warmth a comfort to my hol-ey bones

He loves me deeply still; I see it every day

And life’s sweetest:  love from this man I have come to know.

Alas I search the scripture and find that even Job

Needed to trust in the Lord not knowing why

His suffering exceeded the faith of his friends, his kin

When all was really a battle within the spiritual realm

Having very little to do with his past, to do with him.

So in the seasoning of the late missionary, Helen Roseveare

“Can you thank me for trusting you with this experience

Even if I never tell you why?” God asked of her in the midst of terror.

“He doesn’t have to tell us why,” she would learn

“But He often does in His gracious, loving mercy,” for sure.

So I will seek the perspective of the privilege

It is to be used in this life by the Lord almighty

Relinquish my frame to His plan and outrageous love

Then wait and see:  He is worthy.  My response:  humility.

JJ

God, sun breaking through clouds, sunrise, sunset, storm, hope, rays of sun, sunshine, clearing

 

 

It tops the list

We all have times that define who we become:  turning points such as the day we got M-arried, came to C-hrist, experienced a T-raumatic event, W-itnessed the passing of someone we dearly loved, or maybe we I-nherited some money.  I have experienced all of these and some more than once!  I will leave you hanging on which one(s) have occurred more than twice!

Tonight I will publish the big “T” list for the most traumatic events I have experienced in 2 sub-categories as follows:

Emotional Trauma.  March 4, 2003:  The night my former spouse left me.

Physical Trauma.  December 18, 2016:  The afternoon a case of shingles took hold in my face.

Gratefully the gifts of time and good counsel have allowed the first one to fade over the past 14 years.  I have a wonderful husband now who loves me beautifully in my “intended beloved” Steve.  He has witnessed and endured the second big T with me two weeks ago.  I think we are both still in a bit of shock as I continue to recover.

I had just been diagnosed with shingles on Friday, December 16th in my doctor’s office.  (Shingles is a flare of chicken pox in adulthood triggered by severe stress.)  Dr. J prescribed an anti-viral medication and sent me off to the grocery store pharmacy to pick it up.  Within a day I started to itch and the pain in my right jaw was ramping up; the lesions on my face began to get bigger and blister.  Various remedies here at home were not making any impact.  I began increasing my dose of Ibuprofen to near-prescription levels to be able to sleep.  By Sunday I was holding the right side of my jaw and ear canal in agony and taking double the OTC dose of pain meds every 6-8 hours.  I thought that maybe I needed a chiropractic adjustment to treat the wrenching my neck from the daily seizure attack episodes.  However, the interim massage or stretching techniques were not working; heat or ice made everything much worse.  I sat in our sauna for awhile and had a rash by the time I was done.  What was going on?

Nothing really prepares you for the cruel, searing, unrelenting pain of shingles when it erupts in sensitive areas of the body!  I started to scream when the pain randomly pulsed up like a lightening bolt cutting through my jaw and ear.  I called our local Rapid Care Clinic and figured out how Steve and I would need to get there before it closed at 2:00 p.m. on a Sunday.  The internist who saw me marveled at the lesions that were now worsening both inside my mouth and on my face.  The rash was from the Valacyclovir (anti-viral).  He sent me to the hospital . . .

Even a crow bar might not have been enough to wrench my hand morphed into my face in a feeble attempt to control the pain.  Excruciating stages of waiting followed.  It would be EIGHT HOURS from my last pain medication at home before my first dose of Torodol in the ER (that did NOTHING, by the way!!!).  It would be an  additional FOUR HOURS before I would receive Dilaudid in my hospital room that brought relief and another day and one-half of nausea that broke through the Zofran administered to counter it.  Four liters of fluids ran through my veins over the next 3 days.  I held back portions of food on my bedside table to try and protect my stomach from the two new anti-viral medications, gabapentin, and prescription-strength Ibuprofen needed to manage my symptoms.  I slept 3 broken hours each night.  The foam ear plugs didn’t work.  HGTV got me through a drugged, constipated stupor.  I was so very sick.

I will never forget what happened in the tiny room in the ER where Steve and I landed that Sunday afternoon.  The room was so small that the gurney was positioned on an angle.  There was no call light and medical supplies were stuffed in open shelving within reach of each of us.  That’s not right!  A doctor eventually came in and started questioning me as if he had just met me in the hallway outside the gift shop.  “Did you not get report from the Rapid Care Clinic or internist who sent me here?” I blubbered.  “All of my allergies are in your computer system,” I tried to state while keeping some semblance of composure.  He left to go check as if to bow at the end of a chat at a wedding reception.  Unbelievable.

We tried to remain calm.  There was a lot of commotion outside our closed door from the activities and people moving about beyond it.  Hours were passing.  I had never had children before so the pain of birthing was not in my memory.  They do say that the pain of shingles is worse but I really do not know that personally.  Steve appeared numb with exhaustion.  We have both been through so much trauma over the past 5 years of my nightly seizure attacks, tens of thousands of dollars of medical expenses, lost holidays/events of life together, cancelled dreams, permanently altered sleep patterns, maddening chemical-avoidance activities, and existence from one crisis to the next but even so, we were not prepared for this night.

Then I completely came unglued.

Blood-curdling screams erupted from the depths of my soul.  Wails of grief were so deep that my entire body twisted and extended against the bed as heavy tears burned my scorched face and dampened the sheets, my clothes.  (I would end up wearing my sweats that way for the next 3 days.)  I could hold on no longer!!!  For a brief second I was able to glance at Steve as I gasped for air.  I never want to see that pained look on his face again as long as I live.  His fingers were stuffed into his ears to protect his hearing.  I was that loud!

Someone burst into the room to see what was wrong.  I could not speak, just screech!  It hurt my good ear and infected ear alike.  I could not stop except to push air into my lungs by thrusting out my chest wall.  Soon came the IV Toradol and it did nothing.  Back on my allergy list it went.  There was a chance that it would help this time.  It did not.

Still groveling, gasping, yelping in pain, someone eventually wheeled me out of that tiny room, onto a cold elevator, up a couple of stories, and into a room outside a noisy nursing station somewhere in that massive medical center.  Room 475.  Then Steve and I were alone.  Actually I don’t remember where he was.  I could not stop the yelps and hot tears as a rather disturbed-looking nursing assistant tried to help me to the bathroom around yet another angled hospital bed, infusion pump in-tow.  [Two weeks later I would learn a possible relationship between urinating and relief of seizure attacks as each relate to the issue of dehydration.  (See https://justjuliewrites.com/2017/01/03/hydration-is-key/ for more discussion on that topic.)]  More agonizing hours brought a nurse with another pain med on my allergy list but I did not care.  The torture finally began to come down some for the first time in half a day.

What remained was a shell of a man and his wife who kissed goodnight in that darkened hospital room.  The acute phase of the Physical Trauma was coming to a close as the chronic phase of shingles was to begin for me:  now officially labeled a “medically complex patient.”  There have also been complications of severe constipation, mouth sores that spread to the inside of my mouth and throat OPPOSITE the herpes simplex inside-and-herpes zoster outside on the right side of my face.  The body rash on my torso and forearms that accompanied the Valcyclovir spread to my groin on the right when the anti-viral medication was changed to Famciclovir.  Eventually the Hospitalist/Physician’s Assistant (because I never was allowed to see an Infectious Disease Doctor as promised you see) agreed to let me try Acyclovir with an OTC remedy just hours before discharge from the hospital.  I am still on it and tolerating it.  Whew.  Most importantly, the new combinations of medications controlled the worst of the facial pain.  Two weeks later I have started to sleep more hours in a row!  Woot!  Woot!

Interestingly, I was spared virtually any neck or back pain during the entire ordeal.  I had been in the ER earlier in December with intractable back pain.  Good golly!  Hydration and the use of new antibiotics for the treatment of Lyme disease probably played a role in both the flare and alleviation of both events.  Go figure.  Or maybe it was those simple back exercises I had started in the middle of the night before going to bed that did the trick?  Who knows?  I am grateful to the Lord for some sparing during this crisis, these crises.

The Lord is like that you know.  While he promises there will be trials for Christians during our lives, he also promises that they will have purpose and meaning in His plan for our lives.  There will be grace and goodness along the way (ie. HGTV hospital hangover!).  Jesus Christ grieves over our suffering and knows it too from His beatings, stabbing, death on a cross.  I will never know the amount of Physical Trauma that He willingly endured for me, for us when He died in our place for our sins.  And one of His own, Job, endured much more with tragic losses and boils over his entire body (not just his mouth and face), before the Lord blessed him immeasurably, restored his life anew.  After the Emotional Trauma noted above from 2003, I got to experience this kind of blessing.  That gives me hope with the more recent Physical Trauma.  Knowing all of this is helping me to rebuild, heal, go on from December 18, 2016.

Gentle Reader:  to whom will you turn when your time of testing comes?  I hope and pray that you will turn to the person of Jesus Christ:  our Redeemer Who makes all things new, all things right, all things good.  Even in the worst case scenarios of life, we won’t be suffering forever you know.  Our pain will not be wasted.  How about if we spend our lives worshipping the Lord together?

My God is Jesus Christ.  I can’t think of a better Person to place at the top the list of who I want to spend eternity with when the time comes.  It might even be soon ya know . . . JJ