Tag: CIRS

The Nurse Who Wore Perfume

Published on by Jesus is for the WoundedLeave a comment

 

Nurse Ratchet from One Flew Over the Cuckoo's Nest
Nurse Ratchet from One Flew Over the Cuckoo’s Nest

After about 4 hours breathing fresh oxygen being pumped with fluids, I revived after a most bizarre episode.  The Benedryl made things worse yet brought about 12 hours of slumber on and off into the next day.  Whew!  What an ordeal it was . . .

Such is life when battling biotoxin illness, multiple chemical sensitivity, mycotoxicosis, Chronic Inflammatory Response Syndrome, or what-is-formerly-known-for-me-as Chronic Lyme Disease.  On Saturday I was counting the dollars and quarters from the neighborhood girls who bought friendship bracelets at our garage sale.  I noticed a familiar perfume scent on the money that reminded me of a houseguest not long ago.  Perhaps it was Flora by Gucci again?  Anyways, no sooner had I zip-locked everything into a sandwich baggie when I started to feel sickly.  Bizarre and violent seizures followed, ramping up and ramping down over the next hour.  Holy crap!

I knew I had overdone things somewhat working the garage sale and doing some yard work the day before.  But hey, we had some things to get rid of and were delighted to pass some items along for free.  The girls who bought the bracelets were adorable!  I couldn’t resist letting my initial Trinity Jewelry by Design originals go for 1/6 the original asking price just to see the smiles on their faces.  Of course the older sister next door would need and extra one for her sister who was away at a dance competition so 2-for-1 would be the best deal for her.  Same thing applied to her sister’s best friend who was in the midst of a little object lesson about not taking money from her mother’s purse to buy bracelets!  Lesson was learned and we had smiles all around.  I was so delighted to send them along and tell them the significance of the 3-bead design (for the Father, Son, and Holy Spirit!).  They looked down at their bracelets like they were hearing it for the first time.  That’s cool.  As they wear them each day I pray that the Lord brings more promptings of His love and gift of salvation through the Holy Trinity.

It’s Monday, I am breathing better today, and I feel reasonably stable.  The windows have remained closed as every-other neighbor seemed to be getting their lawns treated today with fertilizer and pre-emergent weed killers.  Ah the scents of Spring!  All fragrances don’t seem to bother me but I am not taking any chances one day after an imaginary trip to the ER.  Imaginary?  Oh sure, it’s all in my head you see.  They gave me a repeat psychiatric diagnosis probably leftover from the last time I was there over a year ago.  It didn’t matter that my biotoxin medical doctor from Michigan graciously called the hospital on my behalf with an update.  Chronic Inflammatory Response Syndrome just isn’t on their radar.  The ER Doc seemed to give the impression that he was understanding that the difficulty breathing, obvious seizure attacks, and intolerance to the cold hands of the admitting nurse were related to CIRS.  It has its own ICD-9 code don’t you know?  I guess they do not.  Out came the “non-epileptic seizures” and “feeling nervous” diagnoses.  I never said I was feeling nervous!  The third diagnosis was “tremors.”  Yeah, tremors that make your head bang aren’t really tremors are they?

Non-epileptic seizures have TWO causes:  1)  biological and 2) psychiatric.  Most medical professionals ignore the first cause.  If they were psychiatric they would happen only when I am under stress or have a need for secondary gain (like attention or control).  Sorry Doc.  These episodes happen unannounced, unprovoked, and at happy times.  They started with an exposure to a cyanobacteria when kayaking in a local reservoir with my beloved and some fun people.  I love my life with Steve and in general.  I am so blessed and grateful for so much even during this time of illness.  Armchair psychiatry without a work-up is wrong.  Test me.  I have nothing to hide.  So frustrating.

Shortly before the completion of the IV fluid and Benadryl treatment, a nurse came into the room to announce that the nursing shift had changed.  She checked the monitor and recorded my vitals before leaving the room in a puff of noxious and cheap perfume.  WHAAAAT?  Why do you think I am in the EMERGENCY ROOM NURSEEEE POO?  When she returned I gently but firmly asked her to leave and not return due to the same.  She said she had received “report” and knew why I was there.  HELLO?  ANYBODY HOME?  Two other nurses came in a bit later and before the IV pump alarm was set to go off (another sensory trigger).  I appreciated their timing and thanked them.  A bit roughly they disconnected the IV, removed the IV in my arm, and began to hurry us along.  Time to go!  I had to ask them to wait a moment as my body started seizing from the shock of the needle coming out of my arm.  Hey, it happens every time a needle goes in or out don’t you know? I really can’t make this stuff up don’t you know?  It simply isn’t worth it and would take too much energy anyways.  Just look at the outpatient records from the 21 IV magnesium treatments at that same hospital this past October and November.  Same reaction.

I felt numb on the way home.  My incredible husband made sure I was settled and quickly got outside to mow the lawn before dark.  I ate a light dinner as fast as I could to gain some strength before giving into the incredible fatigue.  Tic attacks woke me up several times as I slept for about a half of a day total.  The ordeal was over.  My third trip to the ER since becoming ill October 11, 2011 was over.

What do I do now, I wonder?  I mean there are binding agents that I can’t tolerate (chlolestyramine and Welchol) and one that I can (activated charcoal) tolerate but the latter doesn’t register on Dr. Richie Shoemaker’s biotoxin illness protocol.  During a wretched episode earlier last week the Lord gave me some insight that the activated charcoal might work better for me.   So a few grains of AC is all I am doing for treatment in addition to my own election for a mold-free, Candida, low oxalate diet.  Oh yes, and our home will become a safe-zone to reduce exposures.  Sadly there will be no more monthly home group.  I spent the last one in my bedroom with seizure attacks while the group worshipped, prayed, and fellowshipped in our living room.  Even the hint of fragrance amongst them was too much for me.  Sigh.  I  need the fellowship Lord!  And what about the friends and family who will be in town for my husband’s son’s wedding next month?  This is a heartache for both of us right now.  I love Steve’s adult children and his family.  I am grateful for them.  I guess I’ll be Skyped into the bridal shower . . .  And I doubt that I will be able to enjoy playing hostess to family that has not seen our home beautified since they were last here for our wedding 7 years ago.  It’s just so very risky.  Maybe it will be warm enough to visit on our lovely patio.  Hope so.

Oh well.  We’ll figure out something.  We always do.  Better leave that one for a future blog.  More prayer is needed before then fer shur.  JJ

Brain Dump and CBD

Published on by Jesus is for the Wounded6 Comments

And so I was right.  That is not necessarily a good thing.

The doctor apologized and gave a couple of reasons why he missed 5 pages of an 8-page lab report completed 6 months ago.  We had reviewed the results 3 months ago or rather, the first 3 pages of the report!  As it turns out, the last time this particular set of labs was completed over a year ago, the last 5 pages were missing then as well.  So what is the significance?  Those last 5 pages contain information about daily cycles of two hormones that could explain my ravenous, violent seizure-like episodes in the early morning and evening.  Treatment related to those findings could have alleviated my tremendous suffering for the past 6 months!  However, the doc had nothing to say about that.  He said he actually needs to do more research on how to lower melatonin levels!  Well thank you but I have heard this before from you . . .

My next concern was the potential role of a new herbal remedy I started on the lab finding of severely elevated melatonin.  Looks like there are two compelling research articles stating that the active ingredient in what I am taking has not been shown to elevate melatonin levels.  Whew!  Looking closely resulted in seeing how the active ingredient may actually modulate the inactive ingredients that have an effect on melatonin.  Since this active ingredient has served to modulate one particular trace substance when the latter is in higher concentrations, well, that gives me hope.  The answer to the question of how to lower melatonin might already be in my cupboard!

Here’s what “it” is:  high CBD hemp oil.  This is not medical marijuana nor an oil made from the psychoactive ingredient:  THC.  That would be illegal in my State and actually not necessary to impact seizure-like activity.  Both CBD and THC-laden products are from a cannibus plant yet the plants grown for high CBD oil and their products are legal in all 50 of the United States.  No special procedures are needed to obtain it:  just sort through a plethora of information online to find a pure product with concentrations high enough (pun intended) to affect health.  (You cannot get high from CDB oil by the way.)  And the benefits are tremendous:  intractable epilepsy, diabetes, multiple sclerosis and many more.  Add THC and the list of therapeutic effects increases to include cancer.  Thankfully for me the active ingredient needed to reduce seizures is CBD with only trace amounts of other “cannabinoids.”

Here’s a great place to find an overview of hemp oil, cannabis, how its administered, and the benefits:  www.mycbdresearch.com

The first week experimenting with CBD oil has yielded 3 days with less than an hour of seizure-like activity.  This is a HUGE improvement over the average of 3 hours per day of seizures for EIGHT STRAIGHT MONTHS and the 1-3 hours per day overall for the past TWO  YEARS!  At least once per month the duration increased to 6-12 hours.  Whew again.  I am encouraged.  I have trusted the Lord throughout my research process and even in deciding which product to try.  Receiving the melatonin lab results today may be a confirmation of this decision.  The timing of this situation coming together is very interesting indeed.

Doc did have one idea:  resume using my bright light therapy for 30-60 seconds, multiple times per day to naturally lower melatonin levels.  Cool beans.  You know the old saying, “do what you can, with what you have, where you are.”  Another one goes, “here we go again!” with what could be yet another false start to healing.  Somehow I have a feeling this one will make a lasting impression.  Stay tuned.  I am going to get well!  :J

Addendum:  just opened a new Facebook page entitled, “Seizure Free Zone.”  Like us and join the discussion today!

Pray without ceasing

Published on by Jesus is for the WoundedLeave a comment

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.  1 Thessalonians 5

The pages of my journal are color coded for quick reference to the various noxious symptoms of this ongoing illness.  This system helps when making medical summary documents or answering questions during doctor appointments.  It looks like every line has either blue (for headache), green (pain), orange (seizure attacks), purple (nightmares or waking terrors), or red (flu-like sickness) today.  Whew!  I had planned to write the hairy details directly from my journal for my blog entry today but I think that just mentioning the rainbow of wacky stuff going on is good enough.  But don’t worry.  I am more stable now.  I slept until 5:00 p.m. today with about 1 1/2 hours awake this morning for breakfast and journaling.  This is crazy stuff man.

And yet every speck of color and it’s accompanying saga are part of the Lord’s perfect plan for my life.  I am sad that Steve has to endure this too.  Yet as a believer, to have a wife with a serious illness is part of the Lord’s Divine plan for his life as well.  How this works is such a mystery!  So for me, if I am to live as Christ then I must take His Words into my heart and allow them to breathe life into my achy body each day.  I must pray without ceasing, give thanks for all the goodness that continues all around me, and know that He can use everything for His glory.  This is a mighty responsibility.  Hope I get it right!

Will this time of illness refine me in some way?  Perhaps.  I know that in another time of my life, repeated trials softened the harsh edges of my personality.  I learned that I have a Heavenly Husband and grew in fellowship with Him.  (Oh how I wish every married woman would know the joy of having a perfect partner in life as manifest in the Lord so she could cut her earthly husband some slack a little more often!)  I also witnessed the amazing provision of my King in what appeared to me as “upside down and backwards” most of the time.  In the end, the pieces of my frazzled life came together perfectly.  I even met my knight in shining aluminum (aka the 24-foot box truck that Steve rented to move me from Illinois to Indiana!) who has shown me love like no other person on this earth.  The Lord restored the years the locusts had eaten (Joel 2:25) so to speak, and I was set to live happily ever after . . .

When there’s a major turn of events in the life of a believer, chances are there’s also a major opportunity to receive something wonderful that could not come any other way.  Who changes his or her personality just because it’s Saturday?  No, it usually takes a major train wreck or two for that to happen!  Because the Lord has shown me His faithfulness, His heart, and blessings even in heartache, I will continue to choose to lean on Him, wait on Him for all things.

Therefore we do not lose heart.  Even though our outward man is perishing, yet the inward man is being renewed day by day.  For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the thing which are seen, but at the things which are not seen.  For the things which are seen are temporary, but the things which are not seen are eternal.  2 Corinthians 4:16-18

These colorful experiences of mine, good and bad are temporary.  Thank goodness!  Allow me to share with you one more passage that brings this hope home in my heart:

You, who have shown me great and severe troubles, shall revive me again, and bring me up again from the depths of the earth.  You hall increase my greatness and comfort me on every side.  Also with the lute I will praise You — and your faithfulness, O my God!  Psalm 71

We have a Heavenly Father who promises to be with us though all of the trials of our lives and redeem them for eternal glory.  Come to His throne of grace with me Gentle Reader and bring before Him all your weariness, hurts and pain.  He sees them and carries them with us.  And one day they will be washed away when either He comes again for His own or we join Him when our time here is through.

Matisse Tree of Life
Matisse Tree of Life

If you do not know Him as Lord and Savior of your life, well, you are missing out on perfect peace and so much more.  I pray that you will consider following Jesus as Lord and Savior of your life.  If you make that decision today, please contact me and tell me all about it.  If you rededicate your love for Him, please tell me that too.  After all, to reach others for Christ is the main reason why this blog is here.  My time of illness and connecting with you today are part of His perfect plan for my life.  They just represent more pretty colors for the threads in the tapestry of my life you might say . . .

From one extreme to the other

Published on by Jesus is for the WoundedLeave a comment

So much of the self-help genre coaches the weary traveler in achieving a blissful and balanced lifestyle.  When I was an occupational therapist working in psychiatric hospitals, I would often lead a patient group in a goal-setting exercise entitled, “Achieving a Balanced Lifestyle.”  It was always my favorite therapeutic activity to do.

Each patient received a worksheet with the title at the top followed by two large circles, one at the top of the page and one at the bottom.  Both circles were divided into the same 5 sections labeled:  Physical, Emotional, Social, Intellectual, and Spiritual.  The exercise began with the group members filling in each section of the top circle with activities that fulfilled that particular need.  For example, Social might include visiting friends and Spiritual might include Bible study.  Often patients struggling with mood disorders had very little in the emotional and social areas.  Persons with depression had very little on the page at all.

The lower circle was for goal-setting.  My hope was to help the individual begin to see beyond the crisis that led them to the hospital and think about what he or she might do during the day to use time effectively as a coping strategy.  I only asked for one activity in each of the sections.  Of course we had already brainstormed a list of activities as a group and these were written on a large white board at the front of the room.  Eventually each person had a plan and something to share with the rest of the group.  Since so many things are discussed in a person’s life during a short hospital stay, I asked each person at the end of the session to name just one activity as a starting point.  Virtually everyone was able to identify something, a place to begin.

Geez, if I were to complete my own plan for achieving a balanced lifestyle, I wonder where I would begin?  Let’s see, I’d have one worksheet for a sick morning and one for a stable afternoon.  Then there would be another for when I’m most likely to be functional in the middle of the night and another during IV magnesium treatments at the hospital three times per week.  I might be tempted to tear the page in half and add various goal-setting scenarios based upon my feelings at any given moment.  IN OTHER WORDS, setting goals sometimes just doesn’t work!  My best intentions are often met with a 180 degree turn of events.  This requires me to live in the moment on a moment-by-moment basis!

Last night was a crazy example of this.  At 9:00 p.m.  I was with my husband sitting around a campfire outside at our friend’s house roasting hotdogs over the fire.  Within the hour we all were wielding shovels and pitch forks emptying the bed of my back truck of yard waste into a ditch on his property.  But within another hour I was writhing on a bed seizing with convulsions, unable to speak or move very much at all!  The next hour was filled with my husband providing virtually all of the physical care needed to transport me to the bathroom, wash away the sooty residue from my hair and tender frame, and bring nourishment for me to eat huddled under the covers in bed.  Sigh.  So what was my goal by the end of the night?  Get up to use the toilet with my own strength.  Check.  Goal achieved for the Physical section of my paper-and-pencil exercise in my mind.

Almost every day is like this.  Yes, I’ve had 3 days with no seizure episodes in the past 3 weeks and there are about a half a dozen fewer episodes per week overall.  I guess if I could stay in my safe home bubble, I might be able to knock down a few more.  Yet after 2 years of illness I tend to forget and “go for it” when I feel stable, trying to get out of the house to do something meaningful not realizing that the setback pushes me back to “Ground Zero” of the recovery process.  The goal is to not react at all.  Each reaction re-sets my immune system at some arbitrary level, sensitizing me to be more vulnerable to the next exposure.  I may be able to anticipate that exposure and I may not.  Sometimes the cause is hidden.  When our friend placed a log covered with some type of blue fungus on the fire, I had a feeling something bad could happen at some point . . . but we were having fun  . . .

Such is life in the world of Chronic Inflammatory Response Syndrome when you have a genetic disposition that is vulnerable to mold illness.  I have no idea anymore where the Lyme disease fits into the matrix of illness.  Right now the focus is on the mold illness.  And today the focus was on recovery.  Then this evening I got a do-it-sick burst of energy and spent 3 hours washing the composted dirt out of my truck!  Later I made dinner, kale chips (yes & they are pretty weird actually), and a lamb/turkey meatloaf for tomorrow.  I’m sitting here sore, pleasantly fatigued, and sensing a pre-tic syndrome rising up from within.  And so it goes from one extreme to another once again.

Perhaps a better exercise than filling out a worksheet would be to meditate on some Words of wisdom:

5 Trust in the Lord with all your heart and lean not on your own understanding; 6 in all your ways submit to him, and he will make your paths straight.  (Proverbs 5)

Many are the plans in a person’s heart, but it is the LORD’s purpose that prevails.  (Proverbs 19:21)

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  (Jeremiah 29:11)
In their hearts humans plan their course, but the LORD establishes their steps.  (Proverbs 16:9)
So I end with my charge in all of this:  Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ.  (Philippians 1:27)  Whether it’s with tears hidden in the soapy shampoo water or standing outside in the dark soaked with silt-laden overspray from the tailgate of a truck, I will lean into my Jesus for the strength to carryon.  This kind of power is supernatural.  There is no way I could endure all of this and persevere on my own; I am too broken.
I wonder if you have been there too, Gentle Reader?  Have you been in a place where you must do something but you cannot do anything?  This is the very place to come before the throne of grace and meet Jesus, face-to-face.  His infinite love will transform the moment beyond what we could ever imagine, ever wish for, ever plan for.  We only have the moment in which we are breathing anyways.  When your time comes as I have described mine here, I do pray that you will reach for the One who understands and can make a difference now and forever in the course of your life.  His loving presence will transcend the circumstances and lead you forth, with purpose and meaning.
He did it for me.  He does it for me every day.  Perhaps He has carried you before you even realized Who or What was guiding you?  He is here for both of us, transcending the extremes of our times.  I can think of no better way to achieve peace.  Can you?

Good News!

Published on by Jesus is for the WoundedLeave a comment

LeteverythingthathasbreathpraisetheLordPsalm150_6The seizure attacks have diminished from 3-4 per day for up to 4 hours each (and all night long every 10 days) to 1-2 per day.  This is huge!  Praise the Lord everyone out there!  Praise the Lord!