Tag: chronic illness

Best to Hang in There When “There” is Unknown Territory

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With a brain fog or spaciness that defies definition, I humbly submit this blog update!

Tuesday began 2 doses of a promising new treatment for Chronic Inflammatory Response Syndrome:  vasoactive intestinal peptide or VIP.  The first dose was at noon and the second was at midnight.  I felt a little on edge as I went to bed within the hour of the second dose, followed by a few tic zips (such as the norm for me these days!).  What I didn’t expect next was the fearful images that passed before my eyes as I entered sleep mode.  No problem, really.  That’s what prayer is for and I called upon the Lord to sanctify my mind.  Prayer answered.  I was able to fall asleep without any more problems.

My next surprise came with an abrupt wake up at 4 in the morning with a vivid nightmare!  When I say vivid, I mean that the bats in my mind were landing on me, in color and I could feel them!)  Frightful indeed!  Low grade tics quickly escalated into seizure attacks, air hunger, shortness of breath, and at least 20 minutes of rotating noxious symptoms.  Not sure which was worse:  the nightmare or the aftermath!

I have had nightmares and this type of experience before.  The last one was at least 2 weeks ago so the timing may or may not have been related to the new medication.  After all, the pharmacist said it was a “benign” drug and my LLMD said that 50 mcg is a low, loading dose.  Yeah right.  I am overly sensitive to everything right now so it is no surprise that a nasal spray of a new hormone, deposited directly into the capillaries in my sinuses and leading into my blood stream, could shake me up a bit.  Sigh.  No problem again.  This is familiar territory.

Wednesday I decided to take a break from the VIP when I awakened feeling pretty beaten up.  For my daily treatment I just ran some Rife programs, slept some more and had a pretty good day overall for me.  The post-attack headache subsided and I was able to take care of a personal appointment and run a few errands.  I forced myself to get out and work in the garden later and it was soothing therapy.  I praise the Lord for His gift of Spring renewal here in the Midwest.  I love living here.

I took the next dose of VIP on Thursday at noon.  My nose started running right away but this didn’t last very long, thankfully.  Then brain fog settled in followed by a ramping up of my nearly constant companion of a low grade headache.  Regardless, I got going on some insurance matters that have needed attention for over a month.  Guess I’m at the next tier of taking care of things since moving home March 27th;  I was glad to “getter done.”  The day was going fairly well so I got to go to church with my hubby for the National Day of Prayer Service at our calvary chapel.  How sweet it is to worship with my Stevers, to pray, and to fellowship with other believers.  It had also been about a month since the last time I was able to go to church.

The worship was awesome.  However, during the service the music was sooooo loud, and the bass was soooooo loud that both of us had to plug our ears even though we were sitting in the back of the sanctuary under the balcony!  Turns out that plugging my ears is not enough to avoid sensory overload.   I cannot tolerate the vibrational sound energy and bass wavelengths of loud music.  I do not understand why it has to be so loud anyways?  We are there to worship the Lord Jesus Christ, not hurt our ears!  Unfortunately, things did not go well after I returned to wait for Steve in the car. I had to get out of there before the spill-over into seizure attacks would begin.  The music was the trigger that turned this multi-sensory-sick child of the King into what would turn out to be a 12 1/2 hour episode of seizure attacks.  As rocker Alice Cooper once sang, “welcome to my nightmare” once again.

Gratefully I was able to get out of the car by myself when we got home and walk gingerly into the house.   Gratefully Steve was available to help lift me off the couch two hours later after eating and resting, so I could get ready for bed.  Gratefully I was able to attend to my own self care and even make us some food earlier during one of the breaks in the action.  Gratefully I have some new positioning strategies in bed to minimize the impact the uncontrollable shaking has on headaches and other painful areas.  Gratefully Steve prayed for me both before we fell asleep and in the morning before he left for work.  Gratefully I was able to make a snack when I woke up ravenously hungry at 4 in the morning!  Hmmmm.  There’s that “4” number again.

The attacks tapered down by the time I was to finally get out of bed at 9:30 a.m.  Just a quick jolt welcomed me to my day and I was able to take care of myself and our dog.  Once again I was pretty beat up by the events of the last evening.  Twelve and one-half hours had passed since the episode began and it was finally over.  The shell of the person that is Julie was leftover to slowly get going, make my special dietary items, and take care of the stuff of life before my afternoon physical therapy appointment.  Gratefully I was able to start then later finish and mail the jewelry order that was due today.  But in the middle of the day and during physical therapy, there was another rebound episode of neuromuscular events followed by copious tears.  I am so sad.  This is really hard.  I am really broken.  Gratefully my therapist is trained in some calming techniques of myofascial release that work really well with me.  Even at my low energy level with soreness all over my body, I am now able to function again.

So this is chronic illness and the ups and downs of recovery.  One day you are excited for a promising new treatment and the next you are herxing from a reaction to the promising new treatment.  The physical therapist says that the seizure attacks seem “softer” than the ones I have had in the past.  O.k., I guess that’s good.  Maybe it is just part of the process of assimilating a new drug that crosses the blood-brain barrier and into a zone where illness has a foothold at the moment.  Sure is a tough road, I’ll tell ya.  Recovery is not for wimps.

At this point is usually where I write about my faith in the Lord Jesus Christ, sustaining me and giving me hope in the face of severe testing and trials.  If you’ve read this blog before, you probably know what I am about to write here.  You might expect me to say what a difference it makes to have Jesus in my heart or I would be filled with despair.  I usually say a lot about His sustaining grace as I truly believe that my life and these experiences are for my ultimate good and His glory.  Yes, I am softer in many ways than before this illness began.  This suffering will end someday.  I know where I will be when it ends.  Do you?  Do you know where the trials of your journey through life will lead you when your life ends?  If you do, does  your life show it?  Oh I hope so!

If you have not turned to the Lord as your Saviour, lover of your soul, forgiver of your sins (and you all have them, sorry folks, no one is perfect), and hope for all of eternity, then  what the heck are you waiting for?  How many blogs do I have to write about suffering before someone out there that isn’t saved gets it:  the meaning of life is not all about YOU, it is not all about ME.  It is all about HIM.  It ain’t about a religion either.  It is about a relationship with the God of the Bible.  Until we are given an eternal perspective that He provides and transcending joy that He grants beyond measure when we but believe in Him, all we have is our fallen human condition.  Now that is sad indeed!  Our problems will never all be solved in this life.  We will hurt.  We will lose things and people and places that we love.  Our experiences will be a mixed bag at best.  We will fall short of the peace we seek when we realize that in the end, the stuff of this life adds up to dust, to nothing at all.  We can’t take anything with us when we die.  As the wisest, richest king that ever lived (King Solomon) once said, it is all meaningless!

Yes, it is best to hang in there when there is unknown territory.  I am taking Jesus Christ with me.  My eternity began when I accepted Him into my heart as Lord.  Oh gentle reader, will you too?

P.S.  Going for a walk with my pup, a friend and her pup.  God is so good.

VIP: Vasoactive Intestinal Peptide

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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

VIP New Treatment Tracker: Day 1

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VIP47900-24-3With the rather loud barking of our pup, the mail lady delivered the foam cooler today containing vasoactive intestinal peptide.  Wow.  It is here!

I quickly gathered myself together with a quick prayer, reading of the instructions, and sipping some water before ceremonially administering the first dose.  A quick spray in one nostril delivered 50 mcg of VIP in a stable saline solution.  It must be stored in the refrigerator so I found a special spot for it shortly thereafter.  Here we go again on another great adventure:  another promising new treatment approach to lessen the burden of recovery from Chronic Lyme Disease and Chronic Inflammatory Response Syndrome.  Like Mach I with your hair on fire, no?

Within an hour I had a slight runny nose that quickly resolved.  No problemmo and this could be expected from a nasal spray.  The stress of it all brought fatigue so a nap will follow shortly.  Then maybe I will shower for the day.  It is beautiful outside today after all.

(For more information on VIP, head to the References section of this blog.)

My Lord goes before me this day and always.  To Him be the glory for the results of this new treatment approach.  He will be the author of the story that will follow, not the pharmacy, doctor, nor myself.  He allowed me to stumble upon this information again and participate in my LLMD prescribing VIP for me.  Thank you Jesus for preserving my mind this past year so that I could respond when a new modality presented itself.  Thank you for continuing to lead me, walk with me and see that this whole ordeal not be wasted.  There are many blessings You have brought me despite the dark days  that began October 11, 2011.  Your light is forever before me no matter the outcome.  Lord help me keep my eyes fixed on You.  And if it is your will Lord, heal me.

In Jesus name,  amen.  Just Julie

Did She See Them?

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redtulipsimagesIn my weakness, it is the Lord who helps me think of others not me! Many times this is a blessing for both of us.  Today, this is my test of faith.

I am grateful to finally get the thank you card together for the staff of the hotel that we stayed at during the remediation of our home this past Winter.  Now it’s time to bake lots of cookies and deliver them at the staff’s shift change  for maximum sharing of the goods.  Hey, I don’t want any of these fine folks to be left out!  We’ve been back in our home a month and I still remember their kindness that cannot go unnoticed, even now that life has gone on . . .

If  I am guided by the Holy Spirit to serve or give to someone else and I let it go by, then I am probably too preoccupied with the stuff of my life to focus on anyone else.  When that happens, it is a sad moment indeed.  I could easily make an excuse that would sound legitimate with how I feel these days.  But that would be cutting out the strength that the Lord adds when I am too weak to do anything.  If He gives me the insight that I need to reach out to someone else, do something above my abilities, give more than I feel comfortable, then He will also provide the “goods” needed to complete the task.  He leads us unto good works as an outpouring of His Spirit in us, sometimes as a manifestation of our spiritual gifts and other times by His grace as noted in His Word:

He guides me along the right paths for his name’s sake.  Psalm 23:3b

If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To him be the glory and the power for ever and ever. Amen.  1 Peter 4:11

“And Jesus, looking upon them, saith, With men it is impossible, but not with God; for with God all things are possible.”  Mark 10:27

I see that following His lead is for my good as well as it brings me close to Him:

Philippians 1:6 says, “Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus” (NIV).

I may feel like crap yet I know from my experience of this past year that if I just start in the right direction, He will be faithful to help me complete the work to which He leads.  When the task is completed, the next step, perhaps a more difficult one begins.  Yeah, letting go of the results, the human need for appreciation and recognition is a tougher one for me.

Such is the case with the red tulips.  I don’t really know if she ever saw them, planted for her back in time.  After all, she has her own calling and tasks to complete.  Sometimes it hurts for my sacrifice of precious time and energy to go unnoticed.  It hurts even more when it is repeated and that largely comes when I haven’t gotten it right the first time, trying something again and hoping for a different result the second time.  In the Twelve Step program, they call this “insanity!”  Expecting different results is also magical thinking and rarely helps in reality.  There’s so much more missing in this relationship with this gal than red tulips.  Flowers simply may not have been on her radar at all.  Lord, help me let this ol’ memory go.

The Lord sees my heart and always notices.  He notices every time, perfectly, on time, and in my personal heart language.

23 Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, 24 since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.  Colossians

So Lord I pray that You:

23 Search me, God, and know my heart;
    test me and know my anxious thoughts.
24 See if there is any offensive way in me,
    and lead me in the way everlasting.  Psalm 139

Bring my motivations to light and help me to serve others in the language of Your heart not mine.  Lead me in Your ways, strengthen me in my pajamas, and let any light that may shine on me be for Your glory alone.  Thank you for the gift of Your Holy Spirit, teaching me, guiding me.  For the glory of Your name Jesus Christ I pray.  Amen.

Now where’s the sugar and vanilla?

It’s after midnight and the tilapia is chewy

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The real title to this blog was to be:  “To submit is divine,”  but I thought that if I wrote that, no one would read it!  Who wants to submit to anything?  Hey, in my flesh and self-will, no way! 

This day I had to succumb anyways to the nausea, headache, half-day of seizure attacks, and relentless sickness that is Lyme Disease and Candida.  Oddly, it was lying in bed with my brain “fried” for hours and staring at the ceiling that the Lord gave me the quietness I needed to discover what might be making me sicker:  every stinking grain of sugar.  Most of us with Lyme, chronic illness and inflammation know the pitfalls of sugar.  I’d already broken my denial on that one earlier last year.  Sugar feeds Lyme and yeast infections (a common complication from antibiotic and bacteria-killing  treatments), messes with metabolism, weakens an immune system already under attack, and simply won’t satisfy the angst of my flesh for long enough to bother with a treat anyways.  And today it appears that some hidden sources are making me worse.

I am already on a “sugar-free diet” by the way!  Desserts are long gone.  I consume 1/4 serving of low-sugar fruit every other day, use only unsweetened products, omit artificial or herbal sweeteners (that contribute to headaches for me), cut out honey/maple syrup and so on.  Turns out that there’s sugar hidden in my probiotic that is supposed to be helping me!  Two doses I take daily equal 8 grams per day!  Oh no!  Coupled with the 2-4 grams in my “plain” coconut yogurt, my only real treat, that adds up to way too much!  Now that’s a bite in the shorts for sure.

I started to suspect something wasn’t right a few nights ago when I actually began craving my late night supplement concoction mix of coconut yogurt to make the various supplement powders and tinctures more palatable.  So instead I found alternate soft foods to use at night and allowed myself the coconut “treat” of 2 ounces only in the morning.  Can you imagine the restraint it takes to open a luscious carton of yogurt and only eat 2 ounces?  Yeah, I did it and felt a sweet victory.  And now that yogurt is my enemy with the HCL Synbiotic Probiotic.  I guess even the low sugar fruits must now go for a season as well.  This is WAR!

To submit to a drastic dietary change is very difficult and takes time to integrate into a nutritional plan for healing.  I wrote the “Extreme Dietary Survival Strategies” in the PAGES section of this blog to reflect the many guidelines I’ve already learned from others and from my own experimentation.  Looks like there are some new ones to add!  Geez o’ man.  Instead of mixing my supps with dreamy plain coconut yogurt, I’ll have to use coconut butter or unsweetened vanilla almond milk.  O.k.  I can do it.  If this change minimizes the symptoms that killed my day today, I will submit to a 100% sugar-free diet.

It is the nature of our flesh to want what we want, when we want it, and in the way or timing that we want it isn’t it?  When we want it is usually right now!  It is the nature of living in the United States where we have access to just about everything at just about any time of day or night, that makes it hard to delay gratification.  It is the nature of becoming a mature adult in a civilized society to learn that planning ahead, hard work, sacrifice, and patience will get us much more than grabbing things within reach.  However, beyond this it is the work of the Holy Spirit in the life of a believer of Jesus Christ that knows for certain that the perceived barriers in our lives are merciful paths to true freedom and peace, even joy.  Such is the glorious mystery of living with Jesus in one’s heart, where He goes before us with love and grace every step of the way.  In the end we will receive more than we ever dreamed possible as we bring glory to our Lord and Savior for waiting on Him.  “The end” may not be next week; the end may transform into our eternity with Him as the crap of this earthly life has ultimately succumbed to His plan and purpose.  Our wants and needs may even change!

Seems strange that in the wee hours of the morning after some chewy tilapia, my mind would finally clear.  My tears have finally been wiped away.  The realization that to submit is to live is now here:  the authorities, the situations, the delays in my life are Christ-ordained and designed for my best self, best life after all.  I do not claim to understand why I or you must go through all of this suffering, loss and pain in the way that we each experience it.  Let’s pray about it.  The answer to the “why” question is often left to the mysterious unanswered questions of life.  I do claim to know the One who reveals Himself to me in His perfect timing with gentleness and love.  I do claim to have faith in my Jesus who has promised me that He will be with me through it all.

I’ll betcha tomorrow is going to be a better day.

Let’s wait with great expectation together, k?