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

Give the gift of compassion

Know someone battling a serious illness and want to give them a meaningful and encouraging gift this Christmas?  Give the gift of compassion and a copy of

Hope Beyond Lyme:  The First Year  

Now available from Smashwords.com and Amazon.com!
Now available from Smashwords.com and Amazon.com!

Now it’s available in 9 different formats so you don’t even need an eReading device to download your copy for just $2.99!  To learn more go to:  https://www.smashwords.com/books/view/371334 and be sure to click the “Give as a gift” link from any book page.  Smashwords will email it to your loved one immediately upon purchase.  If you would like it to be a surprise instead be sure to put your own email address where indicated, print it out when the order is complete and hand it to the person, well personally!

For Amazon Kindle shoppers, head to:  http://www.amazon.com/Hope-Beyond-Lyme-First-Year-ebook/dp/B00G9WF1RK/ref=la_B00GAOAOI8_1_1?s=books&ie=UTF8&qid=1386631580&sr=1-1

Discover from a fellow sojourner, my most meaningful and encouraging moments to share vignettes of understanding with your loved one battling a serious illness.  There is hope and with faith in God, we will find the true meaning and source of that hope.

Thank you, Gentle Reader, for helping to make this project possible!  Just Julie

And then it gets real . . .

It is now 6:39 p.m. on a beautiful Saturday and I am grateful to be able to function at a low level once again.  Sometimes your own posts become your best medicine!  I am so glad that I had the opportunity to explore the topic of suffering before two hellish nights.  Sigh.  Perhaps this suffering shall pass in time . . .

Low Dose Naltrexone, a compounded medication used off-label to raise a person’s pain threshold and boost the immune system of someone with an autoimmune disease, is now ruled out for me.  Just 1.75 mg taken at bedtime the past 2 nights was enough to set off violent seizure attacks!  Oh yeah, I’ve had some of these attacks more often lately, but not for 1 1/2 hours in a row with hardly a break to breathe!   The duration was much longer this morning with longer breaks in between additional episodes.  After 2 hours then 3 hours then 4 hours of sleep, “I am able to function at a low level once again.”  This saga is a bite in the shorts for sure.  I AM FRIED.

So what did I learn here?

First, it’s time for more than one-half of a day break after completing one treatment regime before beginning the next one!  Healing from a chronic illness is a process, not a race.

Second, it’s time to simplify my daily routine even more.  Cleaning the entire house every week is just not going to happen for awhile.  This is a bummer since I am paranoid about dust accumulating, since we completed the mold remediation of our home.  Maybe the dust is cleaner now?

Third, it’s time to ask for help when I need it and not just from my husband.  A few ladies have offered assistance over these past 2 years of illness and I have rarely accepted it.  Maybe I could use help with a few things during this particular time.

Fourth, I must continue keeping my mind filled with scripture, Christian music, Christian messages and uplifting images to ward off the temptations and lies of the Evil One.  I must not fall into despair.  I must not keep apologizing for the effects of an illness that are clearly out of my control.  I must live as though the Lord is creating a masterpiece from the fragments of my shattered life, picking up each piece as if it were a treasure and not another burden.  God will use this for His glory and my good.  I must hang in there for the finished work.

Fifth, I must keep writing, including the good, the bad, and the ugly.  And when I do, I will continue to leave my gentle readers with hope by the time I reach the last period.  To write has been an incredible salve for my wearied frame, my wearied mind.  My soul, well that’s already in the hands of my Savior.

I am hungry again!  But it’s more-than-time for an Epsom salt-and-baking-soda bath and a shower!  Perhaps the Beanitos chips and unsalted dry roasted whole cashews I just ate for dinner while writing this will tide me over just a little longer?  Hope so.

Seeya next time, perhaps with better news.  :J

Elle gets a real job
Elle gets a real job

Counting on Muscle Memory!

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Completing 30 minutes of the Metabolic Effects hybrid workout DVD with repetitively lifting 5 pound weights, reflected the highest level of fitness I had achieved in my life.  The increased upper body strength provided a great foundation for hitting the kayaking season with my River Bear husband just 2 months later.  We would go out with the local, recreational kayaking group virtually every Tuesday night from summer through the Fall.  I even sampled one member’s cookies after a night of paddling:  a sweet treat, in a peanut butter version for health reasons of course!

While everything was not perfect at that time, I mean I still had chronic pain and needed a couple of days to recover afterwards, life was as good as it had gotten.  I was working part time, enjoying gardening in a real home (not a condo or townhouse), and blessed beyond measure with a loving husband and church family.  My father had died earlier in 2011; that was bittersweet.  My dad died  2 months after I got to see him in person for the first time in 30 years!  So while  I was grateful for the reunion, the healing, and the new relationship with him, I was also very grieved for his passing.  And near the end of that year I had begun the Master Gardener classes at our local County Extension Office.   To become a Master Gardener was a new goal borne out of my mother’s love for gardening passed onto me.  All in all, it was a good and important year in my life.

What I did not count on was contracting viral hepatitis after kayaking in a local reservoir October 11, 2011.  I was deathly sick.  I never fully recovered.  After the holidays, my doctor when looking for other reasons for my illness and backed into a clinical diagnosis of Lyme Disease.  Within a year mold illness would also be discovered and a need to completely remediate our home.  The year and one-half of stress, illness, extraordinary expense, inability to work, and social isolation would take their toll.  My body became severely deconditioned as physical activity generally exacerbated most noxious symptoms.  To complete my basic self care, prepare my special diet, and to keep the house clean became my focus in addition to all of the activities related to managing my healthcare:  16 to 18 hours per day!  The remaining hours were crochity at best.  Dialing a phone and pressing 18,000 times the “1” key is not too far from the truth when you have to call so many health care providers, insurance companies and so on!

Today I am counting on muscle memory.  You’ve heard of that before, right?  Wikipedia defines it as follows:

Muscle memory has been used synonymously with motor learning, which is a form of procedural memory that involves consolidating a specific motor task into memory through repetition. When a movement is repeated over time, a long-term muscle memory is created for that task, eventually allowing it to be performed without conscious effort. This process decreases the need for attention and creates maximum efficiency within the motor and memory systems.

I am hoping that when I am able to work out consistently, the memory pathways will still be there to get me stronger a little more quickly than if I was starting from scratch.  Certainly I have experienced this, for example, when getting back into my kayak 2 weeks ago, for the first time in a year.  I do remember how to hold the carbon fiber winged racing paddle after all!  And I didn’t fall out of my 19 foot Kevlar Stellar SR surf ski.  Wow.  There sure are sweet benefits to being married to a kayak racer, by the way!  My equipment is very cool and exceeds my abilities for sure.  (With the chronic pain, the lighter, more efficient equipment helped me to participate in a demanding sport.)  Thank you Lord for this cool history and the hope I have in You.  It’s all good.  🙂

One week before this journey began

VIP: Vasoactive Intestinal Peptide

Vasoactive Intestinal Peptide Molecular Structure
Vasoactive Intestinal Peptide

According to Hopkinton Pharmacy in Hopkinton Massachusetts, Vasoactive intestinal peptide (VIP) is a 28-amino acid neuropeptide that belongs to the glucagon-growth hormone-releasing factor secretion superfamily.  It plays a special role as it exerts potent anti-inflammatory and immunomodulatory effects.  VIP is rapidly transforming into something more than a mere hormone.

VIP is evolving scientifically from a hormone to a novel agent for modifying immune function and possibly a cytokine-like molecule.  VIP is generally used in persons with pulmonary hypertension.  It’s a paradigm shift to explore mutual interactions between neural and neuroendocrine links in health and disease.  Recognition of the central functions VIP plays in cellular process is focusing researchers’ attention on this “very important peptide” as an exciting new candidate for therapeutic intervention and drug development.  Most recently research has been conducted on the use of VIP in the treatment bio-toxin illness such as fibromyalgia and chronic fatigue due to mold and Lyme toxins.

For more information and the most recent clinical research on VIP in for 20 patients with Chronic Inflammatory Response Syndrome, go to:

http://www.survivingmold.com/docs/VIP_published_3_2013.pdf