Time for a change

From Family Practice Physician to Lyme Literate Medical Doctor, from Chiropractor to Obgyn, our medical doctor tries to do it all.  I have benefitted from his expertise yet I am still not well.  And when I saw the redness and exhaustion in his eyes during my appointment this evening I realized that he is not well either!

Everyone who sees this gifted physician knows his crazy schedule, his dedication to help everyone in his care, and his history of nearly dying a couple of years ago with his own debilitating illness.  We used to hear how his office conversion to the government mandated computer system was responsible for incredible stress and delays in appointment times.  For example, it was not unusual to call the office in the morning about an appointment scheduled for 10:00 a.m. and not be called in for my appointment until 4:00 p.m. or later.  Forget the ones scheduled after 3:30 p.m. as they were usually rescheduled.  For awhile about one-third of my appointments were re-scheduled, delaying receiving test results or reviewing the status of a particular medical condition for months.  Frustrating indeed.

Yet when there was an acute issue, the Doc was right on it.  When something new popped up I was sent to the hospital in another section of the medical park for labs or scans, held in the waiting room for results, and sometimes seen back in the office much later that night.  To be seen well into the evening was not an unusual occurrence.  My record was an appointment that started at 2:30 a.m.!  He had one more patient after me and had just received notice that one of his pregnant patients was going into labor.  He must have never gone home that night or morning!  Dedication had become insanity.  We talked about it during that visit.  He agreed.  I understand that some scheduling and office procedure changes were put in place for this new year.  As near as I can tell, the staff and Doc are ending their nights before midnight now.  Virtually the same story, different day.

I recently blogged about some important abnormal test results being misplaced for six months.  That has happened another time as well.  Tonight there was only enough time to go over about half of a detailed genetic cholesterol study.  He handed it to me and said, “here, you take this.”  Whaaat?  He thought the “high CBD hemp oil” that I reported was reducing the seizure attacks 40% was vitamins C, B, and D.  Er, no!  After correcting the computer’s voice recognition software two dozen times, I believe he understood what I was saying:  sitting there with my ventilation mask on to avoid seizure attacks from some mysterious exposure in the office.

Mysterious was the exposure until I asked one of the nurses about it.  I had asked before and a different nurse declined comment.  And yet tonight in her own fatigue, a long-time employee openly shared how their office has routine leaks in the ceiling throughout the summer.  The staff has complained about the musty smell and requested testing for mold spores.  Evidently the tests came back “negative.”  The nurses still battle sickness at work.  A friend of mine who is a patient there can detect the musty smell but I cannot.  I just get tic attacks sitting in the treatment room for 2 hours waiting for the Doc!  My worst episode lasted 2 1/2 hours NON-STOP began after midnight dominated by convulsions most of the time!  My husband came to pick me up around 4:00 a.m.!  I’m sure that exhaustion and stress were a factor being in the office so late that night but hey, I was sitting in a water damaged building to be seen by my doctor for mold illness!  Whaaaat?  Soon after that I started wearing a mask every visit!

I have learned so much from my brilliant Doctor.  He is a Christian man who really cares about his patients.  He has provided better care for me for six years here in this smaller Indiana town than I ever received in the large metropolitan area of Chicago.  When my health got significantly worse 2 1/2 years ago I hung in there with him, hopeful that we would find answers.  I was also unsuccessful finding another MD or clinic to address the intractable seizures, pain, etc.  Gratefully, the Lord has now led me to another clinic in Michigan with two physicians specializing in methylation issues and biotoxin (mold) illness, respectively.  After three phone consultations, extensive paperwork, and additional lab testing completed, my husband and I are preparing for my first in-person visit on March 24th.  We will stop at a lab near the clinic for additional blood work to better match Dr. Richie Shoemaker’s protocols for “Chronic Inflammatory Response Syndrome.”  My current MD and I have worked closely on Dr. Shoemaker’s protocol yet neither of us are officially trained; this led to using the wrong laboratories, incomplete test results when the samples were not processed correctly, and improper sequencing of the treatment plan.  Two very expensive medications from an out-of-state compounding pharmacy either did not work or made me much worse.  We tried!  The biotoxin illness Doc at the new clinic works closely with Dr. Shoemaker and is a Christian too.  I am encouraged.  Lyme disease is not the focus at the moment and that’s o.k.

So it’s time for a change.  I still have appointments on the books with my primary care physician as someone will need to monitor ongoing health issues not covered by the new clinic.  He has asked for copies of all of the testing and reports so I am happy to oblige.  With the Lord’s help I will continue tweaking the dose of high CBD hemp oil in hopes of reducing even further the seizure attacks and noxious symptoms that follow.  The Lord is guiding me step-by-step, including through the spiritual leadership of my beloved Steve.  I am so glad I heeded hubby’s advice and did not start seeing every expert who sounded good on the internet!  When moments are better for me, we celebrate and don’t think about the bad times.  We both see examples of how the Lord has used this season in our lives for His glory.  We are closer than ever, more in love than ever before and for that I am grateful.  I am closer to Christ than ever before as well knowing that He heard my truly desperate cries for help the night before I first started the CBD oil.  I was ready to die and it was not to be.  I was spared from further anguish and suffering, turning a corner to better things at last.

If you are suffering this day, this night:  do not give up!  There’s a blogger praying for you Gentle Reader.  More importantly the God Who created the universe knows your name, sees you, knows your pain, and gave his life so that one day your heartache would end.  Please draw near to Him and He will draw near to you.  He will never leave you or forsake you.  Everything will be worked together for good someday if you but call upon the Lord and let Him into your heart.  These statements are based upon His Word and promises that are true today and always.  The Great Physician will see you through, always my dear one.  Take care,  JJ

Recovery is a jagged line

Today my words came back to me.  My beloved Steve was comforting with his encouragement that there can be many setbacks even when on the road to recovery.  Ah yes.  The old, “recovery is a jagged line” speech.  I have let those words fly many times when working with my patients as an occupational therapist.  There was the cardiac patient who was frustrated with having to restrict his activity level to basically mope-ing around the house for his first week home from the hospital.  I also recall a lady practically quarantined in a back bedroom of her home with a great view of the surrounding woodlands.  She had a portable refrigerator, phone, laptop, accessible bathroom, hospital bed, wheelchair, walker and many conveniences to help her recover from a knee replacement surgery.  I had to encourage her to push up her jagged line a bit lest she become too comfortable in her hospital room at home!

occupational_therapy_no_limitsOne of the many reasons I enjoyed working in home health care was the ability to use the person’s real-life situations, supplies, and responsibilities as part of his or her occupational therapy.  The role of an O.T. is to evaluate the daily activities of an individual and the skills needed to complete those activities.  When there is a breakdown due to an illness, surgery, mental health problem, developmental delay, disability, or disease process, the O.T. works with the patient and his or her resources to restore function.  I was always amazed at how “resourceful” some patients could be!  I think the farmers were the best.  I’ll never forget the industrious wife of a patient suffering after several failed back surgeries.  The lady of the house had built from scrap wood a rolling cart with a seat on top and rope attached to move it along the floors in her home.  What was she moving?  Well her husband of course!  He was eligible for a wheelchair rental but evidently the subject never came up.  I don’t think they even wanted one when it became available.  The downside:  the gentleman would not likely become independent in household mobility and related activities when sitting on a cart that had to be pulled by others.  Recovery is sometimes a flat line too:  no true recovery at all.

As for me, the recovery is moving forward.  I am 12 days into using high CBD hemp oil to attempt to control daily seizure-like tic episodes.  Today I had a setback for about 2 hours but at least the episode was low grade without a severe neck headache or pain.  And when night time rolled around to my bewitching hours of 9-11:00 p.m. there were pre-tic symptoms and nothing else.  This is the second night in a row with relief!  Every night prior to this and for the past 8 months I have had 2-4 hours of intermittent seizures.  Virtually every day or night for the past 2-1/2 years I have had intermittent waking seizures.   Praise the Lord, the pattern is changing!  At either set intervals or when noxious symptoms start I take a full or partial dose of high CBD hemp oil and get relief.  Nothing has ever done this before!

It’s not like I haven’t prayed, submitted, waited, or tried more diets/supplements/drugs/manual therapies/technologies/chiropractors/testing/remediation than, as they used to say, “Carter has got pills!”  I am actually still preparing to see methylation and biotoxin illness specialists in Michigan later this month.  It is likely that the cause of illness is related more to exposure to biotoxins than Lyme disease.  All that may be clearer sometime down the road.  At this time my husband and I are rejoicing for the relief from our hellish nights.  He just might start getting a full night of sleep before too long!  That is if we don’t stay up for other reasons . . . ;J

If you are curious about high CBD hemp oil then I offer this informational website:  www.mycbdresearch.com  and join the discussion on Facebook at:  www.facebook.com/CBDhempandseizures  There’s hope here for many with seizures and other neurological, intractable health conditions.  For all of us there is one ultimate source of hope that will sustain us whether recovery is a straight, jagged, or invisible line:  a relationship with the Lord, Jesus Christ.  To find Him we only need to get on our knees and open our hearts to His enduring love, His love letters to each of us in the Bible.  I would have never made it this far without my Jesus.  I am humbled and grateful for many aspects of these past 2 1/2 years:  I’m working on accepting the wretched parts.

Meeting you, Gentle Reader, along the way is a sweet gift.  Thank you for being a part of my recovery too.  JJ

It’s eBook Week

RAEWbanner1 for March 2 to 8 2014 promotion

Looking for hope and encouragement while you or your loved one recovers from a serious illness?  I invite you to check out Hope Beyond Lyme:  the First Year.

The first year enduring and battling a serious illness can test everything we thought we knew about coping with the trials of life.  In this book, I invite you to share the more meaningful moments of my journey as I seek to draw strength from outside of myself to endure the trials of my particular story.  My hope is that you, too, will find strength and hope that transcends your day-to-day experience.  I also hope that you will consider the hope found in God though a personal relationship with His Son.  His presence in One’s life makes a difference in where a person lands when this particular journey of life is over.  Will we have peace or will we have despair?

For the next week, my eBook Hope Beyond Lyme:  the First Year is 50% off!  Just use coupon code WE45A at: https://www.smashwords.com/books/view/371334

Take care,  Just Julie

Brain Dump and CBD

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!

Getting there, slow but sure

That’s something my Grandma L used to say when we asked her how she was doing.  It didn’t matter if she was in the hospital recovering from a bout of shingles or adjusting to a new living situation:  she had an upbeat disposition that covered anything that wasn’t quite right in her world.

Below are a couple of treats to share with you as I slowly venture back into making macramé and leather jewelry.  This hobby is a great creative outlet and another way to connect with others when someone fancies an item from my online jewelry shop:  Trinity Jewelry by Design.  Take a look and find some new and cute wrap-style bracelets with new beaded leather bracelets on their way soon!  Click on the images for more information on each item.  :J

Handmade Boho Macramé Wrap Bracelet
Handmade Boho Macramé Wrap Bracelet
Every Day is Valentines Day Macramé Wrap Bracelet
Every Day is Valentines Day Macramé Wrap Bracelet