Twas the morn of endo

Twas the morning of endo

And all through the house

Not a creature was stirring

Not even a louse.

The kind buried deep inside

The caverns of thy bowel

Who knows what’s it’s name

To be extricated via trowel.

I digress to my gardening

Terms instead of “incision”

For to bear more pain, discomfort

Is not something I can envision.

So to sleep, aye to dream

Via chemistry or exhaustion lo

We soon will have answers

Perhaps by time of ho, ho, ho!

Will this be a blessing

In disguise as gone before

Suffering giving birth to hope

We shall pray as inside goes the scope.

For H. Pylori messes the axis

Of the gut with the brain

And causes problems like mine:

Seizures on top of stomach pain.

Could this be the work of the Lord,

The prayers at once coming true?

Oh heck at least the deep snooze

Will be sweet on this Tues.

Vampire Diaries 2

hebrews, Hebrews 13:5, abandonment, promises of God, alone, loneliness, scripture, depression, sorrow, loss, illness, sickness, hope

Tears going up and down a lot this day

On the roller coaster of emotion I find myself on:

Help cometh x2 but test results won’t satisfy

As here I sit with my neck aching all through my brain.

I tried.  I really tried to figure it out and failed.

The symptoms that remain still taunt my peace

Leaving scars, leaving woes, leaving loss behind the hope

And yet my breath prevails so in and out I will also go today

To match the pull of the vampire’s teeth left in my chest wall.

The infusions continue instead of a long-desired break

The bank will love us less, the medical folk perhaps more

Whilst someone’s Mercedes payment will be made

And my saga continues on Big Box Store hamburger.

Hope always seems just one more day out there somewheres

Leaving me here beat up from this morning’s episode of torment

A snuggle with my husband got transformed into caregiving

And more hours were lost in the aftermath once again.

At least my dog seems to understand as she nudges her nose at the leash.  “Can’t we go now?” her soft brown eyes contend.

Relief might come in the mail soon

Or maybe not; it’s hard to tell

So I’ll keep calling on my Jesus for now

His calling card never leaves and never fails any of us anyways. JJ

 

 

So much to consider

Phil 1:12, Philippians, trials, suffering, endurance, Christian, crisis, long term, illness, chronic, humor, gallows12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.”  Phil 1:12

Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme:  we shall rejoice with Christ as our guide!  Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right?  I mean he created aardvarks, zebras, and tse tse flies!  What’s up with that?  Oh I know that the Original Adam named them all but just how did he do that?  They were all such weird creatures!  So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.

Take for another example the thieves that attempted to steal gasoline from an RV.  This is a true story:  instead of tapping off the gas line they ended up tapping off the septic line instead!  When the fluid started flowing it was not fuel it was the polar opposite:  stool!  So sad.  Such a righteous punishment I must admit!  And as a grateful owner of a travel trailer all I can say is:  Tee hee with a smirk.  ;}

I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however.  I’ll just keep it simple:  there’s some good and there’s some that is not.

On a good note I am grateful to report a widening of social contacts of late.  I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church.  I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship.  All of this is good.  It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different.  We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.

On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly.  Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone.  It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain.  Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day!  I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall.  So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time.  This treatment coupled with the wintry temperatures below freezing have brought incredible pain.  However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good.  Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!).  Just maybe these past 4 years have not been wasted after all!  It appears that each new treatment has prepared me for such a time as this:  we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .

There is so much to consider.  Will I continue on antibiotics long term?  Will my health insurances help us out or cut us off next week?  Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes?  When would I transition back to more herbal-with-pharm-grade supplemental interventions?  Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox?  How much more stress can my beloved husband, Steve, be expected to bear?  And how will we pay for all of this?

As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease.  I just wear long underwear everyday to keep warm!  We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully.  I know that to be true.  I have met many of them when we had a local Lyme disease support group.  I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources.  (See this link for more info on chronic Lyme.)  Perhaps my case was one of the more severe.  Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life.  There is so much to consider that simply was not on my radar over 4 years ago.

If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you.  There is hope!  You are not alone, Gentle Reader.  Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis.  Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness.  He sees you and will see you through what you are facing as He has done so for me and Steve.  He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).

May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory.  And, um, when we get our prized prey I’ll just say, “please pass the catsup.”  Squirrel on the Bar-B-Que anyone?  Ewwwwww!  :JJ

He really cares: Part 1

The initial blog title rattling around in my brain for the last 24+ hours was, “You are THE ONE who really cares.”  After all, when each of us is alone in the midst of a trial (particularly when it is medical), it is only you that bears the greatest burden of the suffering.  Others offer comfort, prayer, helps of various levels, and if you are lucky will actually stick around for more than a few moments.  But it is you, one and only, who must bear the pain . . .  And that can be frightening to say the least!

Rather than rant about what to do with fear, give platitudes and verses with which to train your mind, and otherwise avoid ministering to the weeping heart, I will simply offer this:

Just lay your head on the lap of Jesus.

More than anyone, Jesus Christ knows what it is like to be killed, pained, abandoned, betrayed, falsely accused.  He is the only one Who can be with you as the Holy Spirit, in your time of sorrow from its beginning until its end.  He will never leave us or forsake us and always be there if we but call upon His name.  He is worthy of our

praise

tears

anger

weakness

alms

thanksgiving.  I was reminded of all of this just yesterday!

About 3:30 p.m. in the afternoon I was abandoned in a treatment room of my doctor’s office.  The nurse practitioner (NP) had left the room after writing an order for me to get IV fluids and after “catching” me collapse during a short convulsive episode during the appointment.  After all, that’s why I was there:  to document the crisis, get the orders, and head over to the hospital for treatment thereafter.  I was sitting there kind of dazed.  Soon after she left the room (and after another nurse came into the room to revise the scheduling of some other appointments), I began to list to one side.  There was a chair next to me with my purse and water bottle resting on it.  The weakness increased and a few inches at a time, I began falling to my right side, coming closer to the purse on the chair.  I could not speak.  I could not brace myself.  I could not do anything but be glad there was a chair next to the one upon which I was sitting so as to break my fall.

The next 20-30 minutes were very ugly.  My body collapsed fully onto the chair next to me.  My face smashed into the zipper of the purse while my glasses and cover-style sunglasses pressed into my face.  I looked straight ahead with my head rotated completely to my left, straining my neck most uncomfortably.   The front of my right ear was crushed underneath me on the purse whilst the back was free-falling unsupported; the back of my head pressed into the vinyl backrest of the metal chair.  Not exactly pillow material!  My right hip was twisted and pushed into the thinly padded, vinyl seat of the chair upon which I was sitting.  The ringing in my ears had already increased with the headache that had been working its way into action over the past hour.  Legs cramping, toe tips burning as much as my finger tips, and feet struggling to keep contact with the floor to stabilize my position . . . herein I would remain for the next 90 minutes.

I thought about many things.  First, I prayed.  I prayed again and again and talked to God about many things.  Will they be coming soon?  Do I hear them coming?  Was I expected to go out to the nurse’s desk after the NP left the room or was she coming back with more instructions?  I really could not remember since I was already in the brain fog of recovering from the earlier episode that she had witnessed before she left the room.  Surely the staff would notice that I had not left the room yet?  Or maybe not.  I waited in that same treatment room (#4) TWO HOURS the last time I saw the NP before I stepped out to mention that I was in there waiting.  “I didn’t know you were in there waiting for me,” she explained with her soft, sweet voice that I would learn never changes even in the midst of an emergency . . .

Time passed.  It was hard to ignore the searing pain of the two pairs of glasses being pressed with my full upper body weight into the side of my nose.  I could not move to get more comfortable.  I still couldn’t speak.  I tested this out and nothing happened.  In a while when I tested it again, my arm would start shaking; if I tried my leg, my leg would start shaking.  This is what I call, “neurological collapse” at it’s finest.  I learned on in a Catamenial Epilepsy Facebook page that in true epilepsy (which I do not have) has a name for this phenomenon called, “Todd’s paralysis.”  It can go on for up to 48 hours and mimic the signs/symptoms of a stroke.  Todd’s paresis usually resolves on its own without any residual effects.  I have experienced this complication at least once per week for the last 3 years.  Gratefully, most of the time the residual effects for me resolve within 2 hours, at home, in the evening, and within reach of my beloved husband!

There is nothing I can do to quicken the process of recovery from an episode.  It takes what it takes.  Knowing this I tried to calm myself down and focus on my breathing despite my twisted posture.  My rib cage was constricted so I did what I could to at least slow down each inhale, each exhale.  I did what I could to keep my neck and shoulder muscles tensed a bit so as not to twist my upper torso any more extremely than it already was.  I tried to relax the crushed tissues on my face so the pain would subside.  This worked poorly.  Suddenly the voices beyond the closed door seemed louder.  Then I heard the doctor’s voice.  This would be the time to try and vocalize something for help.  My voice was weak.  help.  Help.  I tried many times.  Probably no one in the same room with me would have heard those first cries.

I redoubled my efforts.  I took a deeper breath and vocalized a little louder, “Help!”  Then I rested and made more attempts, “HELP!”  Surely the door cannot be that thick!  I can see a crack at the bottom between the wood of the door and the low pile carpeting.  “HEEEEEEELP!!!”  I cried again.  My nose was running from the first time I had started to cry, dripping onto my purse.  Fortunately it is made of an outdoorsy, washable fabric.  Your mind thinks of all kinds of things when you are trapped.

To be continued in Part 2

Yes, no, and wait

They say that the Lord answers prayers with three responses:  yes, no, and wait.  I believe I have experienced all of these in a big way this past week!

Yes.  The answer was “yes” to the question of whether or not I would like to be admitted to the Indiana University (IU) Methodist Hospital Neurology Unit.  After an intense appointment with a neurologist in the IU Neuroscience Center, Dr. R. offered an overnight “observation” stay for a video EEG.  The hope was to capture the tic and seizure attack episodes to clarify my diagnosis and treatment.  So with the clothes on my back (since we were 2 1/2 hours from home), my husband and I followed the epileptologist’s advice and proceeded with the admission procedures.  I’d had 2 hours of sleep the evening before and a major episode in the office of the neurologist that morning.  Surely I was primed for plenty of episodes as the day progressed!

And that is exactly what followed:  at least a dozen more full blown or brief episodes captured on video with dozens of electrodes glued to my head and a heart monitor attached to my chest.  The rest of my Tuesday was wretched.  One good part was finding some food to eat on the hospital menu fit my Candida diet, yes!  The staff was nice.  Many unfortunate frustrations occurred as well; you’ve heard enough of those on this blog so I won’t elaborate.  The biggest frustration was seeing the inpatient neurologist twice for about 60 seconds each time he visited my room.  He never looked at my MRI films or my medical records!  His job was to do the EEG study and nothing else so that’s all he did.  Perhaps that is all I could take anyways?  Who knows.

No.  I do not have epilepsy.  O.k., my Lyme/mold literate doctor kinda knew that already.  The hospital neurologist said I needed to follow up with the Neuroscience Center neurologist for treatment or any next steps in my care.  The answer was also “no” to having one of my 3x/week IV magnesium infusions while the IV was still in my arm.  I usually have a tic or seizure-like episode when it is inserted or removed so I was grieved when they could not help me with this; I would need to make up the appointment at Dupont Hospital in Fort Wayne, back home.   The nurse pulled the IV; another episode followed, off camera.

There were plenty of other “no” replies over the 24 hour stay in the hospital.  Perhaps you know what it is like?  I was ordered to be on bed rest and fall precautions, tethered with multiple probes, monitors, and a bed alarm.  Geez.  At least they let me use the bathroom after initially forcing me to take a bowel movement on a commode in the room within view of the video cameras.  Geez again.  Eventually I was too exhausted  to care if the back of my hospital gown flung open.  Finally, after 2:00 a.m., I got 7 straight hours of sleep.  A miracle for an inpatient setting, no less.  Thank you Lord!

Wait.  These past 2 days since returning home have required patience with myself as I recovered from the whole ordeal.  My dear husband drove a total of 5 hours two days in a row plus participated in the neurology appointment on Tuesday and completed a partial day of work on Wednesday.  Steve is a saint, I tell you!  So we both have waited for our bodies to recover from exhaustion.  I will need to wait to speak to the neurologist at the Neuroscience Center as well.  Her nurse was not able to return my phone call Thursday or Friday.  Steve and I are waiting and wondering what’s my treatment plan?  Do I have one?

My heart is breaking with another project that must wait at the moment:  publishing my eBook:  Hope Beyond Lyme:  The First Year.  I need to transpose the final edits into the document formatted for publication.  I’m about 3 hours from pressing the “go” button!  This must wait until I can concentrate better.  I just feel too traumatized and drained by the hospitalization experience.  Perhaps it’s all I can take now anyways?  Who knows.

I do know one thing:  writing is one of the best therapeutic agents for me to come back to my senses!  I am sooooooo grateful for you, Gentle Reader!  You keep me sane!  I am grateful to report that I had a 27-hour reprieve from noxious events yesterday and two less events overall thereafter.  Being away from home and in the hospital (with a limited pharmacy for supplements and compounded medications) forced me to go off most of my prescribed treatments.  This may have been a blessing in disguise!  I’ve started an elimination schedule, gradually adding back one item at a time and recording my symptoms.  Turns out that one of my supplements is made from mold!  Chucked that one last night after a bad episode.  Not sure what caused the one tonight.  Oh well.  It was around 10:30 p.m.  I always have a severe episode then anyways.  Got any ideas?

Yes.  No.  Wait.  Perhaps this week is no different than any other with these three answers to prayer, to the desires of my heart.  I am so glad that I can trust the Lord with any answer that comes from Him.

1 John 5  14 This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. 15 And if we know that he hears us—whatever we ask—we know that we have what we asked of him.

And when the answer does come, the one we have hoped for with longing and expectation, it can be as joyful as a wedding celebration:

John 3:29 29 The bride belongs to the bridegroom. The friend who attends the bridegroom waits and listens for him, and is full of joy when he hears the bridegroom’s voice. That joy is mine, and it is now complete. 

I am somewhere between the themes of these two verses, knowing that He cares for my needs and has a Divine plan that includes all of the events of this past week.  In the meantime I must keep my eyes focused on Him lest they wander to places that will get in the way of healing.  I will rest in the promise that has meant so much to me these past 10 years.  His love prevails and will carry me through all that is to come.  Perhaps it will encourage you too?

Romans 8  38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.