Tag: disappointment

High CBD Hemp Oil and Me

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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

Into the Night

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I am finally awake, stable, and coherent all at the same time!  It is now 12:48 a.m.  Such is life.

First snow dec 2009 007

On a good note, I was able to march around outside this evening in my snowshoes for about 30 minutes this evening.  The night air felt bitterly cold yet the sky was clear with all of the stars visible in our Midwestern corner of the world.  I love seeing our German Shepherd, Elle, jump from one snow drift to the other as she chases after my husband and me.  But perhaps my most favorite moment was seeing her waiting for me as she looked into the house from outside on our covered porch.  Steve had taken off cross country skiing in the backyard and pond area.  She usually follows him closely, often pouncing behind him in his tracks when the snow is deep.  Today she knew that I would be headed out with him shortly after he left and there she was:  waiting with her big expectant brown eyes.  Ah the love of one’s pup!

First snow dec 2009 010

Sometimes when I am alone it is hard to feel the love that I know exists in my life.  When I am the sickest each morning this is especially true.  For me it seems that so much of the success of recovering from this time of illness will lie in what I do with the grief of the trauma I have experienced.  For over two years now, I have felt traumatized by the wretched seizure attack episodes that wrench my body with pain, headaches, cognitive changes, ringing in my ears, crying, spontaneous vocalizations, and violent seizing.  For over two months, the episodes last around four hours total per day with the worst ones occurring in the evening.  The sadness can be overwhelming; the disappointment each time they return can be heavily discouraging.  Both can lead to a sense of emptiness that is devoid of love, hope, and meaning.  At some point I recover enough from an attack to get something to eat or drink.  Even eye contact with the lone pet left behind with me when everyone else in my life has gone off to work or some other noble activity can be a mixed blessing:  comforting and protective (yes) yet a pittance for more meaningful human contact.  By the way, where is God?

Yes, I often long for Jesus with skin on at these times.  I am grateful that most recently I have found Him in the caring voice of a friend on the phone and always in the loving embrace of my beloved Steve.  Sometimes I miss picking up the phone and calling my mom.  This desire to connect with her seems stronger the more the years go by since she passed away nearly seven years ago.  I guess it is normal when a person goes through a time of testing or sorrow to desire the comfort and wisdom of a parent no matter what your current age might be.  If my mom were still alive today I think she would want me to keep moving, keep going, keep trying despite the setbacks.  O.K. mom:  will do.  For tonight I’m going to call on the One who sees me whether or not my husband is around, the dog is awake, a friend is home to answer the phone, or my self-soothing words in my heart to my deceased mother means anything.  I’m going to the throne of grace.

My dear friend mentioned Psalm 91 yesterday.  Here are some gems from the Psalm to which those with an anxious heart often turn:

Psalm 91

1 Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.2 I will say of the Lord, “He is my refuge and my fortress,     my God, in whom I trust.”

**************

14 “Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

From Bibleclassics.com I found this little gem of insight into Psalm 91 that spoke to my heart this night:  “Whatever happens, nothing shall hurt the believer; though trouble and affliction  befal, it shall come, not for his hurt, but for good, though for the present it  be not joyous but grievous. Those who rightly know God, will set their love upon  him. They by prayer constantly call upon him. His promise is, that he will in  due time deliver the believer out of trouble, and in the mean time be with him  in trouble. The Lord will manage all his worldly concerns, and preserve his life  on earth, so long as it shall be good for him. For encouragement in this he  looks unto Jesus.”

Yes, thank you Matthew Henry.  I will hold onto the psalmist’s words of comfort inspired by my Lord who sees me on my bed of sickness, who promises He will never leave me or forsake me.  And if it be His will, He will deliver me from my suffering.  Into this night and for the rest of my nights I will ultimately rest in the loving arms of the one who is showing me His goodness despite the darkness.  No matter what the next day might bring I will trust You.  No matter what the next hour may bring I will wait on You. 

No matter what you too may endure Gentle Reader, I hope that you will be encouraged that your sadness or disappointment does not go unnoticed by the Lord who loves you too.  He is worthy of our faith.  And I know if we both but believe in Him, we will be blessed in some special way that will transcend our nights, our days.  In the meantime He will not frustrate us beyond our ability to cope and will provide a way out when overwrought with temptation.  These are promises in His Word and truths by which we can endure all things.  We will never be alone.  His eyes will always be smiling towards us through the looking glass of life.  JJ

The Next Step is Sideways

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Sometimes you move forward.  Sometimes you move backward.  And most of the time you just go sideways or don’t move at all!  Know what I mean?

When I worked in rehabilitation we had another phrase:  recovery is always a jagged line.  A person makes progress then might regress a step or two before making the “big gains” in strength, walking, functioning, and the like.  Many times my patients would not believe me when I said this to them.  I understood their frustration.  In our fast-paced, achievement and results-oriented American society, it is really tough not to be getting ahead in some way every day.  Well as the old Starkist tuna commercial used to say, “Sorry Charlie.”  Sometimes it just doesn’t work out that way.

Not only does every person not always get where they want to go, not every person gets selected to try for his or her dreams.  These can be a real bummer for sure.  How we handle these delays or changes in the course of our lives may likely determine our character.  Certainly how we respond reflects our maturity as adults, or for Christians, whether or not we are trusting in the Lord who promises a plan an purpose for our lives (Jeremiah 29:11).  While there are probably other reasons we could explore ad nauseum, I’m going to leave it right here.  Ultimately we must get over the failure to achieve the goals we have set for ourselves when it just isn’t going to happen.  You just never know.  Something better might be on the horizon . . .

Several times I have planned to complete a special project and was never able to start it.  (This has happened a lot over the past two years!)  In general, the main reason wasn’t even procrastination.  The reason often has had to do with the reality that something better is waiting for me in the future.  Take my decorating idea folder, for example.  About twenty years ago when our drapery panels in our living room became damaged from the sun, I really wanted to create a custom window treatment that I’d seen in a magazine.  Somehow I would need to design a tracking system where the wall met the ceiling before such systems were even available.  We didn’t have any wood shop tools at the time and I was unfamiliar with the fine art of making draperies.  However I did know how to sew and had a creative streak so that was enough for me to move forward and figure it out.  Sadly, it wasn’t meant to be.

The townhome got sold with the sun bleached draperies pinned from behind to hide the sections that were threadbare.  The problem?  My former husband doubted my ability to complete the project.  Where would we get the materials?  How would we install it?  Where would I find the time to make everything?  All of the ongoing questions discouraged me from trying to find the answers.  A creative person makes something happen along the happy journey of figuring it out.  He or she doesn’t have everything worked out at the start unless there is a pattern or kit with instructions.  This decorating project simply was too much for the two of us to come to an agreement.  It wasn’t meant to be back then.

Flash forward about ten years later and it was meant to be.  Through unfortunate circumstances I found myself single and rebuilding my life in another city; so much had changed.  To pursue a creative project would become “occupational therapy” for me and help me to make my new place a home.  I knew exactly what window treatment would adorn the sunny sliding glass door that overlooked the lush courtyard beyond my balcony.  This time the time was right.

A co-worker told me about a textile company that sold unbleached muslin by the pound.  Yeah, that’s right!  Yards and yards of fabric would be super cheap and just right the right color and style for my project.  I even found material to line the panels all through that poorly marked, rusted back door entrance to the factory.  There were huge bolts of fabric everywhere!  “Yeah God,” I said to myself.  This is good!

The next challenge would be measuring and cutting an inordinate amount of material on the laminate floor of my 3rd floor condominium.  To say my knees were hurting from crawling around cutting all that fabric, would be an understatement.  Then I wondered how was I going to sew all this yardage at my modest kitchen table?  The answer soon came when I was house-sitting in a lovely home a short time later.  The man of the house was a contractor and had a HUGE desk in his office for viewing his drafting plans.  That desk was perfect for sewing yards and yards of fabric too:  spilling all over the place in their spacious loft.  Cool beans.  I sewed and sewed to my heart’s content.  Cool beans again.

Now to make the tracking system to suspend the panels next to the ceiling.  Somehow I stumbled upon a lumber store just off the railroad tracks in an industrial area of a neighboring town.  The guys at Owl Lumber in Lombard, Illinois were great.  Not only did they help me configure the crown-molding style curtain rod, they metered the corners and pre-drilled the holes for the mounting pegs for me as well.  I installed about a dozen pegs into the crown molding, sanded, painted it white, and coated it with polyurethane.  Now all I had to do was mount it on the wall . . . without a ladder . . .

Gratefully I had an extremely sturdy coffee table that became a suitable platform for the installation.  (You simply could not kill that wooden beast so it followed me through 8 moves over the years.  Finally it got sold on Craig’s List 5 years ago!)  I got all the tools and supplies together, my friend Jeannie came over for dinner and a little window treatment project, and we gals went to work on a Friday night.  The only problem was that the building was over 30 years old and there was concrete not wood studs underneath the drywall!  My wood screws would never hold the weight of the solid wooden rod that measured about 8 feet long.  Oh well.  Back to the hardware store I would go for mega concrete bolts and a new drill bit.  Of course I had a darn good drill that would handle the job.  🙂

The next hurdle was the fact that Jeannie was not available the next weekend to jump back into the project again.  What was I do to?  How could I possibly wait when I was this close to pulling it all together?  This thing was massively heavy and I was hoping to mount it at a height that would require me to hold it at a height near the end of the reach of my arms overhead.   How could I do this alone without dropping it on my head?  By sheer will power and determination, that is!  I figured out the measurements of the holes for both the wall and crown-molding rod and pre-drilled the holes.  I figured that if I could slip in a few bolts by hand and tighten them, they would hold enough for me to get the rest of the bolts in as well.  I also used my head . . . literally!  And with only one close call, Lord willing, I gotter done!  Success!

The finishing touches to hang the panels were beautiful silky-type cording that I found at a local drapery supply store.  Wow:  so cool to live in a large city at the time where I found a place where practically half of the store was drapery trims and tassels!  I made a loop and tied it with a Josephine macramé knot, reminiscent of 20 years earlier when it was first vogue to macramé.  I was single then too and had macrame’d lotsa stuff!  Hand sewing the loops to the panels was a labor of love, quite meaningful for me.  Then I was ready for my big reveal to, er, myself.  Would it all come together?  You be the judge.  I loved it!  To open it each morning I gently draped a loops hidden on the backside of the middle of the bottom of each panel to hooks on the wall along the outer sides of the panels.  At night I released the loops and the panels closed like the massive curtains at the end of a theater stage play.  Yeah, it was cool.  Yeah, it was worth the wait.  I was stoked and thanked the Lord for restoring the years the “locusts had eaten” once again.  (Joel 2:25)

That's me in 2007
That’s me in 2007

This is an important story for me to remember years later.  I’m in a situation now where I can’t do projects like this as I recover from a serious illness.  I am grateful for the Lord’s gift of writing and the warm reception to my eBook released a couple of weeks ago (see side panel for details).  Just this morning I was wondering what would be next?  Then I realized that I really can’t do anything more right now.  The book got finished because I had some better days; those days are gone for now.  I’m hoping to catch up on some long overdue regular medical appointments like an eye exam tomorrow morning.  EEEEK!  Will ya look at the time?  Anyways, these next few weeks I won’t be moving forward.  I’ll be taking care of the stuff on the back roads, so to speak.  Perhaps there will be other types of meaningful discoveries along the way, perhaps not.  For now, the stuff of life has my time and attention.

Maybe you can relate?  Whatcha got going on this week, Gentle Reader?  Do take care, k?  JJ

Are we there yet? Part 1

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When the going gets tough, many gals go buy shoes.  Today I think my response will be to go buy dog food and printer cartridges.  Geez!  I gotta get a life, eh?

My husband says that our current living situation (living in a hotel while we remedy my allergy to our home) reads like the childrens’ book Fortunately, Unfortunately.  In the book, fortunately a character gets to fly in a plane but unfortunately, the plane starts to crash.  Fortunately the passenger has a parachute but unfortunately it won’t open, and so on.  Yeah, this is the story of my life of late:

Fortunately, Steve had plans to go to Florida for a United States Canoe Association meeting in January but unfortunately he had to cancel due to the severity of complications of my battle with Lyme Disease.

Fortunately, I got energized after praying with our doctor and discovered I could have a few more food items but unfortunately he told me not to drive and I needed to go to the grocery store to get those items.

Fortunately, after Steve’s daughter, Christina, drove me home, I had started to feel better so I took a risk and drove myself to the store.  Unfortunately I was too weak to walk well and had to hang onto the grocery cart to make it through the store and back to my truck, my home.

Fortunately,  by this time I had figured out that I could stay in the house without seizure attacks and neurological collapses if I kept the windows open but unfortunately it was 20 degrees outside.  So I turned up the furnace and dragged my way through cooking enough food to sustain my special diet a few days on the road.   We had just cancelled a trip then reinstated it just hours before leaving town for over a week.

F:  within 48 hours of leaving town I was 25% better from all symptoms!  U:  The home we first stayed at had a history of water damage and mold, continuing my risk for exposure, noxious symptoms, and difficulty sleeping.  But the recovery process was now underway!

F:  within 3 days, I was 65% better as we continued to travel.  By Friday, I was grateful to be able to kayak in our two-man outrigger  canoe with my Aunt Lori on a bayou off the Gulf of Mexico!  From dying to living once again!  U:  it rained our last full day there and I had a resurgence in symptoms sleeping in the room with the windows open.  F:  the couch in the living room was next to a closed window and I was able to sleep about 2 hours.

F:  we were able to continue our trip to see some friends at their log cabin in the woods of South Carolina for some sweet fellowship and wild boar cuisine.  Hog is a menu item in my special diet and SC is the capital of hog hunters’ heaven, so to speak.  U:  fog rolled in the second night and kicked up the mold spores in the sleeping winter landscape triggering another setback.  Oh well.  We had a great visit anyways and I got another hour of sleep after we closed the windows, again.

F:  I was able to reserve a hotel room back in the Fort Wayne, Indiana area so my beloved could drop me off in a clean environment for our first two nights home.  This would give us some time to figure out a temporary living situation for me while we began the process of mold remediation in our home.  U:  I didn’t get to be with Steve again overnight until three days later.  He would begin commuting back and forth from home to the hotel, transporting needed items back and forth, taking care of the dog, visiting Christina (before she left town for 3 weeks) and so on.  Fatigue set in for him; stress began to mount for both of us.

F:  some dear friends offered me a lovely room-with-private-bath and generous kitchen privileges so I moved in.  U:  I had a few hours to kill in the afternoon between the time when a CPR class ended and they would be home.  All my earthly possessions to carry me through this time was in the bed of my truck or king cab.  The outside temperature was zero.  I simply couldn’t get warm and had no where to go.  I was beyond exhaustion, frustration, exasperation.   I went to a coffee shop to warm part of me then the library to use the computer and kill some time, cry a little.

F:  The lady of the house I was to move into called and offered an earlier time to move in and I was delighted!  This couple provided a place for me to stay 5 years ago when I was dating Steve; so many happy memories from that time.  U:  as soon as I saw them, instead of relief, I began to cry and could not stop.  The stress of my nomad life and uncertain future overwhelmed me.  Their love provided the safe place to let it all out . . .

F:  I had the best nap ever soon after I moved in.  U:  at 4:30 the next morning I had low grade seizure attacks that would not cease.  I got up and prepared a snack and sat at the kitchen table for awhile, hoping our friends would wake up and help me sort this out.  What went wrong?  We never really figured it out.  They had successfully resolved a water damage situation 9-10 years earlier and had “iron bacteria” in their water.  What was going on?

F:  since I had not reacted to the hotel, I made a reservation and went back for 2 more days of respite.  U x 2:  the room temperature vacillated, finally dipping to 58 degrees on a frigid winter night.  The maintenance guy was gracious to attempt a repair however a wire fried when he tested the system spewing smoke into the room.  F:  we were able to open the windows to air out the room and he brought a space heater to warm up part of the room.  U x 2:  the smoke smell was never fully eliminated and I woke up with marked seizure attacks at 2:00 a.m.   We called the office and relocated to another room just to sleep, in sub-zero weather.  More attacks followed in the freshly cleaned, highly chemically-scented room.  What now?

F:  a sweet family and friends offered for me to stay with them.  I packed up again and divided myself between various available spaces in the home for my luggage, food, supplements, and so on.  I had definitely gotten my routine down by now, made dinner and enjoyed visiting with them and their daughter.  She is such a cutie and playing with her was a great distraction from the events of late.  U:  seizure attacks returned as I awakened the next morning.  Guess I wasn’t meant to sleep in my cocoon in the gun room after all.  But I just couldn’t bear to move again.  Tried sleeping on the couch the next night and it didn’t go so well.  My hips hurt so badly I had difficulty walking.  Sigh.  I really enjoyed staying with them!

F x 2:  The very first room I’d stayed at in the hotel (where I did fine) was available so I moved back the next afternoon.  Some dear friends gave us a generous gift to help cover some of the hotel expenses, taking off the time-pressure, stabilizing my situation, so we could start focusing on remediating the house.  U:  almost every time a large item, number of items, or new smell was introduced into the studio room of the hotel, I would have a setback.  Multiple chemical sensitivity had set in and limits the progress.

F:  By this point I’D HAD A 60-HOUR INTERVAL, 72-HOUR INTERVAL, 60-HOUR INTERVAL, AND A FEW 48- HOUR INTERVALS without severe symptoms to date.  Praise the Lord for these, His provision, some sweet times in the hotel room with my “married man” and reuniting with my dog whom we brought to the room as well.  Puppy therapy rocks!  The healing process can also be rocky.  It is now here!

Stay tuned for Part 2:  The Fortunately, Unfortunately story of our home remediation.  This too has been a rocky process with some sweet possibilities as I write this.  Without my faith in Christ, I would be lost right now.  As it turns out, I’ve been displaced due to extreme circumstances twice before in my life.  I have seen the Lord, “restore the years the locusts have eaten.”  (Joel 2:25)  I will choose to “trust the Lord and lean not on my own understanding” for the promise that “he will direct (my) paths.”  (Proverbs 3:5-6)  I will, “press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. (Pillippians 3:14)

Someone once said that life is either a wild ride or nothing at all.  I think I’ve got one of those kinds of lives!  And we aren’t even “there yet.”  Hang on with me, k?  :J