Wide-eyed and bushy tailed: Part 1 of 2

This pup can sleep no matter where she is or what time of day it is.  I’ll bet she is not alone in this.  Most dogs can sleep all day long if they like.  I guess it helps to have 2 layers of eyelids with one covered in heavy fur!  And in my experience, many of the male homo sapiens genre can sleep at will too!  🙂

Squinting early Spring 2014crop

 

Not so for me.  After a rough night, rough afternoon, and low grade episode in the middle of the night it’s as if I have toothpicks holding my eye lids open.  In about an hour my alarm will go off in anticipation of a birthday surprise outing for my beloved husband.  It has been re-scheduled or re-configured six times over the past week with the location, State, and parties involved changing many times due to various extraneous factors.  He only knows about the date changes.  Steve has been a champ through it all!  I kept him guessing with clues and silly gifts.  The changes of date, time, etc. has actually helped keep everything a secret.  I just hope I hold out too!

Sometimes sheer adrenaline gets you through that which you could never do on your own.  I know my Jesus is out front so please:  take the helm!

Seeya later with all of the details and pictures.  I’m headed for a puppy pillow.

:J

High CBD Hemp Oil and Me

So we had a great go of it, HCBDHO and me.

This past winter I gave it a try for about 3 months after discovering some research linking reduced seizures to consumption of a particular type of cannabis oil.  When I found out that there is an industrial hemp oil with only trace amounts of THC and that it would be legal for me to purchase it in my State, I purchased a bottle online.  I worked with the manufacturer and a couple of Facebook groups on dosing.  My initial results were very encouraging!

Within 2 weeks I required increased drops of HCBDHO to receive the same benefit.  This fit the profile of many other users of the product.  Some required nearly 1/2 bottle to stop their seizures even if a child was taking it.  There are lots of details here so I refer the Gentle Reader to previous posts by searching CBD oil on this site.  In general as time wore on, the benefits diminished no matter what the dosing.  Also in time I started having  bad dreams then bizarre nightmares.  The nightmares frightened me.  I could  not figure out why they were happening!  Then I read that some folks are sensitive to even trace amounts of THC:  the compound in cannabis oil that creates a high when taken in products that have a higher percentage of this cannabinoid.  Well I wasn’t having a good time at all!

Eventually I stopped taking HCBDHO altogether.  Now that I am sensitized to it, I do not intend to take it again.  The risk of altered thought processes in my precious sleep (that I desperately need to recover from these wretched daily seizure attack episodes) overrides the small improvements that remained after 3 months.  The benefits did not outweigh the risks.  I am majorly bummed that it did not work for me.  Nothing has worked for me.  No combination of things have worked for me.  I cannot tolerate treatment that works for others without ramping up to violent convulsions.  Detoxing is impossible without noxious, severe side effects.  Talk about being boxed into a dark corner without a flashlight.  Will hope ever shine through again?

Sure it will.  Lately I’m experimenting with magnesium threonate and may try a particular brand of Tahitian Noni Juice.   The latter helped Kurt and Lee Ann Billings, the authors of Mold:  The War Within, who did not do the typical protocols of cholestyramine, activated charcoal or benonite clay to get well.  Yup, all of those three caused me noxious, severe side effects as well.  Sish.  I am very glad that there are new things to try despite the dead ends of my medical team at the moment.  Thank you Lord that you are always my hope with or without Tahitian Noni:  my forever guiding light Who uses the hardships for Your glory . . .

So for those of you considering using high CBD hemp oil (from industrial hemp) or other cannabis products (from hemp classified as medical marijuana), I encourage you to learn all you can at informational sites such as the following Scientific Review of the research literature:    You are also invited to “Like” my facebook page which contains all of the pertinent research that I did when making my decision to try HCBDHO.  The articles include the legality of industrial hemp products and the difference between them and medical marijuana.  Here’s a link to get you started:  Seizure Free Zone on Facebook

May the Lord bless you on your journey too, JJ

Benefits of Hemp Pic

That’s what friends are for

Mrs. Wesolowski would turn over in grave if she saw this title and its dangling participle.  So sorry my late English teacher.  It’s even a song title and a great pop tune as well:

Tonight I got to go back in time to my working days.  I had the privilege of talking on the phone with 2 ladies via conference call that I worked with over 10 years ago.  The two of them are long time friends from college.  As for me, “P1” was the Certified Occupational Therapy Assistant (COTA) in a skilled nursing facility (SNF) where I was her supervising Occupational Therapist.  She was hard-working, dedicated, thorough, and very kind with all of our rehabilitation patients.  We had lots of memorable moments and a few we would rather forget as well.  It’s all in the mix when you serve others in the zany, fast-paced people business of healthcare.

“P2” was also a COTA in another SNF when we met, providing quality therapy services over the weekend.  We laughed and got an incredible amount of work done with residents we hardly knew when covering for the regular therapists.  On call work isn’t for everyone when you have to provide billable services in a place where you can hardly find the resident’s rooms in an unfamiliar setting!  What I remember most about P2 was our 1 1/2 years together when I assisted her with a Fibromyalgia Support group she founded for Central DuPage Hospital.  I learned a lot from P2 as she cared for those who attended as friends, as sojourners, emphasizing the importance of keeping our focus on wellness, not just illness when battling chronic pain.

I am so grateful that P1 put this call together tonight.  We got to talk “shop” for the first time for me in a long time.  They also understood the administrative details with which I have struggled in my brother’s care after a stroke 3 months ago.  With P2 we share a strong interest in gardening:  in the past P2’s home was a registered bird and butterfly sanctuary in the west suburbs of Chicago (a very unlikely place for a natural retreat!)  With P1 I share overcoming a traumatic event at our place of work when an administrator verbally attacked her in front of a regional rehabilitation manager who did nothing to defend P1.  She ended up resigning to save her dignity and avoid having to travel many miles between two facilities with the second one even further from her home.  I respected her tremendously for moving on.  We lost a dedicated employee that day but I gained a friendship that has endured more than this . . .

Their sons are now nearly grown and I have moved 200 miles away to another State to remarry and start a new life.  P1 is back in occupational therapy in a SNF near her home and P2 provides Ai Chi water classes to those seeking peace through gentle movements and relaxation techniques.  Both apply everyday what it means to be trained in the field of occupational therapy:  adapting to the challenges and opportunities of life, enriching the lives of others, connecting with those we hold dear.  I do miss working as an occupational therapist.  I also recognize that I am grateful for the skills I learned in O.T. that I use everyday to cope with an ongoing, serious illness.  Sometimes I wish I could go back in time to relive some of those days when a twinkle in the eye of an older adult was my greatest reward for a job well done.  Or when I hear a whoot! whooot! from behind a closed door from a patient who has just regained the ability to care for himself because of the therapeutic relationship with his seasoned COTA.  Those were the days, eh ladies?

As we move forward in life the focus must always change at some point.  I do wonder if I will get to share a cup of coffee or tea with P1 and P2 in person?  Or maybe we will walk in P2’s garden along the wetland in her backyard and marvel at the 80 birdhouse gourds she might harvest once again.  We probably will never work together again and that’s cool too.  But hey, let’s never lose touch o.k.?  You have filled my heart with goodness this night and I appreciate you too so very much.  Seeya on Facebook.  Love to you both,  Just Julie

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Puffy white clouds and 5 sparrows

 Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.  Luke 12

At first it looked like a gentle breeze flowing through the branches of the variegated dogwood bush outside our bedroom window.  Puffy clouds drifted past the backdrop of the truest “sky blue” you could desire on an early summer afternoon.  Such a simple scene, peaceful too.  Then again the rustling appeared to come from below my view.  Was there, wait, yes maybe there’s a little critter in there moving the branches about?  And lo there she was:  a lone house sparrow spritely jumping about within the leaf cover in and out of my view just a few feet away.  Better not move a muscle or I might disturb the work of my feathered friend.  Does she know that I could almost reach out and touch her marbled wings if the screen window didn’t separate us, didn’t provide secluded freedom for your Saturday play . . .

The little one flew away as my gaze returned to the light blue walls next to the bed inside the window.  Maybe if I waited just a little longer another visitor would appear?  To my delight the green-with-white birdhouse was rustling again from the top, the bottom, and even just beyond my view!  Let’s see:  there’s one, two, three . . . a fourth appeared and darted deeper into the cover of leaves as a fifth little birdie perched right in front of me too.  Silly little one.  He began preening his ecru-colored chest feathers without a care in the world as the branch bobbled up, down, and all around.  He reminded me of my brother’s childhood parakeet, Perky.  How they flex their necks so steeply to reach the soft feathers that form a collar of fluff I’ll never know.  Such a curious, skittish, carefree creation indeed.  Then in a matter of a few seconds, they all flew away . . .

I was alone again.  Maybe I could try to move my head and adjust the comforter covering my chilled shoulders?  Yes, that’s good.  But to move my legs and arms was not to be just yet as my attempt to do so triggered another mini seizure attack episode.  Sigh.  I thought I would be recovering by now.  Not so.  Oh well, when my husband comes back I’ll ask him to bring me the lunch I had made myself earlier and put into the frig in case we were to go out on our tandem outrigger canoe this afternoon.  What a nice treat I thought it would be to have something made ahead of time that fit my special diet and tasted yummy too.  Not quite.  Gratefully it wasn’t too long before he returned to check on me, brought me the container of rice paper finger sandwiches and fed me several bites, one by one.  Then he put the bicycle water bottle to my mouth so I could sip some water and wash down the food sticking to my throat as I lain sideways on the bed.  A few bites, a long sip, a few bites, a long sip.  He has this routine down pretty well by now.  Thankfully these complete neurological collapse episodes only happen every 10 days lately.  They used to be every couple days . . .

In time my strength returned and I was able to put a pillow under my own head and feed myself.  Unfortunately something triggered a major seizure jolt when my beloved returned, setting me back again for awhile.  He was sitting close to me and I suddenly needed some fresh air from outside the window.  Stevers obliged then left me alone again to recover per our routine for these sort of things.  Again I revived.  Eventually I was able to weakly get out of bed and start to put on some clothes.  That’s a nice thing to do after a shower at 2 in the afternoon.  I was feeling a little funny lying there naked rolled up in the comforter.  Oh well.  It’s the best I could do after beginning to collapse in the shower an hour earlier, struggling to dry myself off, and Steve helping me lie down as it appeared I would be falling over any moment.  Flash forward almost two hours as the episode was resolving I was grateful to be able to move my left arm again.  Looks like I would be o.k. albeit shaken for several more hours anyways . . .

Sitting outside in the sunshine helped me regain my strength.  Of course I had another one of my low oxalate snack concoctions (white chocolate!) and a refill of cool water in my trusty Summit City Bicycles and Fitness water bottle.  Little did the guys at the shop know how helpful that bottle had become when I needed a special flow-control mouthpiece to refresh me when in bed, not on the Fort Wayne River Greenway!  Maybe someday soon I’ll get back on my bike.  I am grateful to have had a test run of two miles earlier this Spring; I should be able to repeat a short ride on a better Saturday afternoon really soon, Lord willing.  How hard could it be to peddle a few miles?  Well anyways sitting outside on our patio later this afternoon with pretty gardens all around me and the sun still shining brightly overhead did me a world of good.  The puffy white clouds still filled the sky and I could hear sparrows, robins, and more in the distance.  I got up to pluck a few weeds, pick a few radishes, tinker here and there before returning into the house.  Perhaps my beloved would understand that this day would be better spent at home than paddling on a lake somewhere?  Change of plans.  Enduring these kinds of afternoons together makes it obvious what we should do, more than words can ever say . . .

The rest of the day was decent as I prepared a nice dinner and some food for tomorrow in case we are able to reschedule our outing on the water together.  I do try to be hopeful, eh?  As most Gentle Readers would recognize in this blog we tend to live our lives over here a bit spontaneously:  making plans more at the last minute, in the afternoon or evening, and after checking the weather report/Julie’s snack supply/whatever we can reschedule to be able to get away . . .

This evening?  Not so nice.  We are just not sure what is going on with these wretched evening episodes again.  After a full year of 1-3 hour episodes virtually every night after dark and up to 30 minutes most mornings, you would think one of these specialists I’ve seen would have figured it out!  Yes, my melatonin level is off the chart and melatonin levels change at night.  I am getting out in the sunshine just about every day, exercising at night, avoiding foods with tryptophan (that tends to elevate melatonin) and more per my internet research on the subject yet the excess must be persisting.  (Labs to follow!)  Then my new biotoxin doctor laid a good one on me yesterday, saying that if anyone could figure out what to do IT WOULD BE ME SINCE I KNOW MY SITUATION THE BEST.  Whaaaat?  Why do you think I pursued your clinic out of State?  I was hoping YOU could figure it out!  Even my brilliant functional medicine doctor in addition to your brilliant functional medicine colleague have largely set me adrift.  Now you are saying since I cannot tolerate Dr. Shoemaker’s biotoxin protocol that you cannot help me either?  If you think I was able to figure this out would I be calling you?  Geez oh man.  Lord, come what may . . .

Back to the story of the bird in the hand is worth two in the bush OR wait a minute:  there aren’t any birds here right now since it’s after 4 in the morning!  Yes, I’m back to my late night schedule again.  Let’s see . . .  perhaps Luke 12 can remind me that just as the Lord provided me a sweet distraction of His delightful creation in my time of distress, He cares for me and for Steve in our times of distress too.  He has provided for our needs despite the incredible expenses, sustained us during multiple special events when extraordinary measures were needed to keep me as safe as possible, and granted me the time and space to get well when I cannot work.  I am grateful for my incredibly loving husband, a pretty home and gardens to enjoy when I cannot go out, and sparing of my abilities to think take care of my basic needs.  Sometimes I need to wait for the Lord’s timing on some of these things which is o.k. too.  I have learned to appreciate blessings in smaller packages with gratitude as they present themselves each day . . .

So I choose to take to heart His statement, His promise to care for all of the details of my life.  He knows all about what is happening over here and desires for me to be courageous, not afraid.  He has laid it on my heart that He has a plan and a future for my life (Jeremiah 29:11) and that nothing will separate me from Him or His will (Romans 8:38).  I get this.  Perhaps it’s why I don’t spend as much time crying anymore when the wretchedness comes.  Instead I’ll say,

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.  Romans 5 (ESV)

With the lightness of heart shown to me by my Creator God this afternoon in my time of need, I’ll take the last word of the paragraphs granted by His grace and noted above:

This new day will come anyways, and no matter what may come or others may say, I will find a way to play with lightness of heart in celebration of the One who goes before me and will never go away!

Thank you Jesus for your Word, for your gift of words.  Thank you for helping me get through that to which you have called me and should any good shine through may it be for your glory Lord.  If it is your will I ask for your healing mercies and a time of blessing.  I lift up my husband (Steve), and my brother (Mike) too for your anointing and blessing.  If there is anything hindering our walk with You, please guide us, restore us through your Holy Spirit so that we may delight in sweet fellowship with you all of our days.

In Jesus’ name I pray.  Amen.

HouseSparrow

The Sequel: Same story different day

Don’t you just love a good movie?  The kind where you cannot predict the end until it ends or one where you find out what happened to the characters from the first of the series?  Yes, everyone loves a good story with a happy ending.  As for me, I’m just glad for happy moments!

I decided that it was time to update my video log of the most challenging aspects of the illness I am battling.  Included in my “sequel” are some photos of happy moments and some notes meant to be of encouragement at the end of the story.  Overall I admit that it’s kind of tough to watch.  Sometimes my beloved, Steve, and I (in our attempts to cope with this daily saga) get into a numbing routine where I go off into a back bedroom for a wretched episode then he comes by later to check on me.  I’m safe in bed:  I won’t fall out or anything like that.  He prays as he endures the horrifying vocalizations echoing throughout the house, knowing that there is virtually nothing he can do to lessen the burden.  We simply ride it out until the next one comes along, whenever that may be.

Gratefully we have discovered some things that consistently trigger the seizure-attack episodes or make them worse.  We don’t do these things where possible!  I mean that with nine gatherings last week in celebration of two weddings it was pretty tough to eliminate all extraneous factors.  We did our best.  I made it through five events relatively o.k., was Skyped into another, left two early, skipped a reception, and was carried away from the second to last event after the introduction of the happy newlyweds.  Not bad for a massively ramped up schedule and for someone battling Chronic Inflammatory Response Syndrome.  Or is it Lyme disease?  Biotoxin illness?  Non-epileptic seizures?  No one really knows for sure.

So here it is.  No popcorn needed.  A tissue might be worthwhile.  All prayers are welcome.  I am looking forward to the day when this illness is resolved.  In the meantime I stand on the Rock of my salvation, trusting in my Lord and Savior Jesus Christ to go with me and deliver me in due time.  One day in this life or in heaven, I WILL BE FREE.  It’s the promise in which all of us who call upon the name of the Lord can rest.  Thank you Jesus for your amazing grace.

Time for a nap!  J