Tag: Lord

So much to say, so few words

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Taking a cross country trip this past week when weak was an optimistic undertaking.  Of course there were trials and ongoing mayhem.  And in the midst of it all, there were unexpected blessings too.

Relax, I won’t go on here with a long blah, blah, blog about our recent 3000 mile journey from Indiana to Texas and back!  I’m sure it will unfold in the days and blogs to come.  Let’s just say that overall, the dog had a great time!  She played in the wide open spaces of my sister and brother- in-law’s 5 acre ranch teasing the Golden Retriever, taunting the snarls of the old Chocolate Lab, and skirting the advancement of Armani (the spirited mare and companion of Buddy, pictured below).   Our pup Elle looks depressed at home alone today.  I must say that I understand completely.

Today begins the first day of a new treatment regime for a serious systemic infection.  As you can see by the time of this writing, I have avoided my second dose for a few hours now.  Sish.  I’m such a weenie sometimes.  But hey, can you blame me?  After 2 years of promising treatment approaches and wretched responses to virtually all of them, I am less than brave anymore.  So in a few words as promised:  I’m leaning on the Lord today, grateful for surviving 8 days away from home with some precious memories as a bonus, and slowly getting all of the laundry done.  The rest of the last bag of Beanitos chips is well on its way to my tummy as I say goodbye to one of my few remaining treats to prepare for Candida warfare.  From here and for at least the next month, I’m hitting this beast head-on.  The first few days are usually the hardest.  So what:  it’s time you met your match you fungus among us!

My spiritual preparation comes from the words of the apostle Paul in 2 Timothy 4.  My prayers are for merciful endurance, victory, strength for my husband, and glory to The King:

6 For I am already being poured out like a drink offering, and the time for my departure is near. 7 I have fought the good fight, I have finished the race, I have kept the faith. 8 Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.

Seeya when I can.  Take care all, Just Julie

Steve and Julie with Buddy
Steve and Julie with Buddy

Free Coupon Ends Soon!

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Just a quick note that the free coupon for the eBook, Hope Beyond Lyme:  The First Year, ends on Saturday.  If you’re interested an updated collection of my most meaningful and encouraging blogs plus several Bonus Pages, head on over via the link below.  It’s available in 10 different formats, including a new smartphone app from Dropbox.

Final few days that it's free with Coupon Code: UR45T
Final few days that it’s free with Coupon Code: UR45T

https://www.smashwords.com/books/view/371334

Here’s a little video with a personal invitation from me too:

http://www.youtube.com/watch?v=opCttpUCZW0

Take care Gentle Reader and thank you for your support this past year online.  I am grateful to the Lord and humbled knowing you are there . . .

Just Julie

Spring and Fall

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DSCF8784My body will tell you tonight:  it’s quite an accomplishment to finish our Spring and Fall yard clean up projects all within 24 hours!  Whaaat?  Such is life these days.  All completed just in time for the long soaking rain storm outside my window as Winter approaches . . . the maiden tulip bulbs are going to be real happy in their new home!

I am exceedingly grateful to be functioning somewhat better despite the ongoing noxious episodes that occur most days.  Then there were two noxious-free “holidays” within the past four days.  THIS IS HUGE GUYS AND GALS!  I haven’t had more than a one-day break per week since living in the hotel at the beginning of the year when we were remediating our home for mold.  Looks like the IV magnesium treatments (counted #20 today) and sugar/sweetener-free cholestyramine are beginning to work a wonder inside of me.  I am grateful and humbled.

Despite all of this good news for some reason I needed to cry a bit today.  This year has been especially traumatic.  When I’m in one of those hour-long to several-hour-long episodes my ability to think and reflect is gone.  My mind is blank.  No processing occurs of what is happening to me.  I have heard patients with dementia describe his or her mind this way.  There just aren’t any thoughts.  Gratefully I do not have dementia.  I often wonder, however, if there will be synaptic damage from the almost 2 years of seizure attacks.  Then again, maybe the neurons just needed a little Spring cleaning, resetting, and the like.  Anyways, I believe that to grieve the loss of my health is, well, healthy.  Perhaps it will pave a comprehensive path to healing?

The end of Psalm 139 reads:

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.

I have heard an application of this passage that it can describe the need to reflect upon and grieve a past trauma as part of a God-honoring healing process.  The Lord knows me and my circumstances in addition to the outcome.  By opening my mind and heart to His merciful grace under the shadow of His wings, I will find rest.   I have prayed many times to “get” the purpose of all of this suffering and wondered if I was “there yet.”  I asked my husband Steve, my God-honoring spiritual leader, if he thought there was anything I was not seeing.  Was there some sin or character flaw that required repentance?  Steve was gracious when asked these questions.  We both saw the little lessons and unexpected blessings that were the “silver lining” to this illness.  We have not become embittered.  We have drawn even closer together and to Christ.  Whew.  Thankfully.

Blogging started as online journaling and has become so much more. I do hope that my writing will be used for God’s glory and point people who are going through serious trials, to the person of Jesus Christ.   To the Gentle Reader out there, you have also helped me find a plan and a purpose for this time in my life.  The process has become as meaningful as the lessons learned.  One lesson learned yesterday:  don’t leave a wheelbarrow full of mulch out in the yard!  Put it under the covered porch.  Six times it got rained on and rained in.  Geez that was one heavy wheelbarrow!

A little humor helps fer shur.  And my Stevers is a great model of the value of silliness in the middle of the crap-o-la-ski.  (You were missing my Polish, I know, so here ya go!)  Thanks for hanging in there with me.  Wish I could hug ya, eh?  :J

When the time is right

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One of the hardest parts about chronic illness for me (longer-duration illness, not permanent, hopefully!) is the change in my relationships.  I’ve written previously about the loss of casual friendships, the ones based upon common interests or gathering places.  Today I’m talking about the one between a husband and wife.

Steve and I have been married almost 6 years.  I call him my “intended beloved” since I believe the Lord has blessed me with an amazing man of God as my life partner.  We came together in our late 40’s, having learned much about life, people, and the Lord’s enduring grace in the years before we met.  We’d both lost our youngest sibling and the last of our grandparents within the past 10 years, shared both similar and completely opposite interests, had to relocate due to divorce, seen plenty of changes in the world around us, and came to a saving faith in Jesus Christ as adults.  Still when we got together we needed to work on a few things as a couple.  I believe these things have become our strengths and bonded us together for life.  Yes!

Steve and I share the “love language” of caring touch.  (For more on the 5 love languages, see the work of Gary Chapman.)  Therein the challenge of late lies.  The most noxious symptom of Chronic Inflammatory Response Syndrome for me is seizure-like episodes, 3-4 times per day.  Most any sensory stimuli can make a seizure attack worse or even trigger one if it is intense enough.  An episode can become  worse after it starts if Steve or anyone touches me.  So imagine a loving spouse attempting to comfort his or her beloved at a time of severe illness, reaching out and discovering that the gesture actually makes the person worse!  And if this happens over an over again, despite the caution, precautions taken to be gentle or vary the type of comfort, the spouse can become discouraged.  In our marriage, we have decided to work with the symptomatology and find a firm touch or closeness by proximity that sort of worked for me.  Thankfully, Steve did not stop trying altogether.  I understand that could have happened.

After all, the worst seizure attacks and convulsions happen late at night.  Steve often needs to go to bed to get up for work or another commitment the next morning so he simply cannot stay up with me night after night.  Our physical intimacy suffers.  Oh and if the attack isn’t so bad and we attempt marital relations, it’s a crap shoot whether or not the noxious symptoms start again.  Can you imagine turning something intended to be precious into something so ugly?  We often don’t even “go there” if I’m feeling sick or I’m in “pre-tic mode.”  The heartache of frustrating my spouse isn’t worth the Russian roulette we must play to see if things are going to work out o.k.  Stopping a tender moment also wrecks my thought process; it wrecks “the mood” for me.  Steve just says, unbelievably, that he doesn’t mind or that we had a time of closeness anyways.  Where do they make guys like him anyways?  Certainly I had not seen any in my past . . .

And this is where I must trust the Lord to sustain me, to sustain Steve-and-me through this season of our relationship.  I am incredibly blessed to be married to a man who loves me truly, “in sickness and in health.”  I did not experience this when I was married before as a young woman.  The Lord allowed certain health issues at that time to challenge us, test us, deepen our faith and we both failed to lean on His leading to overcome the trials.  In the end, my former spouse turned to another woman for solace and physical intimacy.  She was an unlikely comfort:  wealthy, mother of 6 children, and spouse of a man about to be imprisoned for embezzlement.  Craig left anyways.  And what that left me was a fear of relational intimacy or at least of trusting another man to endure the inevitable trials of life.

In the time that followed as a single woman, I turned to my Heavenly Husband for comfort, protection, provision.  He was my constant companion and much healing occurred.  It wasn’t until a time of serious illness struck 2 years ago and 4 years into my marriage to Steve that I realized a little more recovery was needed.  Steve’s steadfastness strengthened by his true relationship with the Lord has never waivered.  Never!  I am humbled and grateful.  I often see in Steve:  “Jesus with skin on.”  Steve has been wounded by his past and an ex-wife who disrespected him terribly.  Regardless, he has rarely brought any vulnerability from that experience to our marriage.  He, too, has allowed the Lord to “restore the years the locusts have eaten” (Joel 2:25), rising up to become the spiritual leader God intended.  So glad he’s tall too.  I love looking up to my Stevers.

When the time is right, when we have submitted ourselves to the refining fire that can be the trials of life, when we are faithful to the calling the Lord lays before us, we too may be rewarded with blessings beyond belief.  Those blessings may not be what many think of as gifts or rewards.  For me and my beloved, those good things are the ability to overcome the wretched things of life in a way that actually deepens our love relationship together as well as our walk with the Lord.  My hope in writing this is that you are also seeking the One who knows your pain and loves you just as you are:  the person of Jesus Christ.  (Psalm 41:1-3)  He may indeed bring you an angel to minister to your needs, a “Jesus with skin on.”  He may bring you to the foot of His throne of grace a few times in desperation, alone.  I know that He will not frustrate you beyond what you can handle, however, and will fill your heart with unspeakable joy someday.  (Romans 5:3-5)

I am grateful to see the latter despite wretched illness.  I pray that you too, Gentle Reader, will be able to see all this and more when the time in your life is right.  (Ecclesiastes 3)  The sorrow will not be wasted, of that I am sure if we but keep our eyes fixed on the face of Christ.  We may even get a sweet snuggle with someone special too!

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Addendum:  A new medication is bringing new hope.  I’m down to about 1 attack per day and they are less intense.  We are holding onto hope as this journey of illness appears to be changing.  Praise the Lord!!!!

Progress not perfection: it’s all in the details

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One of the slogans of the 12-step program is the title of my blog today.  Progress not perfection is my sentiment as I sit on the precipice of either potential progress or doom.  Or maybe it will be that it was doom and is now on its way to progress?  This is a mini treatment update.Progress Not Perfection

First, the potential doom:  I am reacting to most foods, supplements, meds., and treatments in a noxious manner lately.  Then, out of the blue I took a 1/4 scoop of sugar laden cholestyramine (CSM) to attempt to counteract the convulsions that came with 1/2 cup of homemade, oven roasted sweet potato fries.  I had added coconut oil and a clean protein to my quick lunch to balance any extra carbohydrates from the sweet potatoes.  Not sure if it was the carbs or some latent mold in the potatoes but I was down for the count, so to speak, within minutes.  I had a more delayed reaction to them and a couple of other things consumed together yesterday so I wasn’t that concerned.  Mistake.

So I cancelled my 2:00 p.m. IV magnesium treatment; I could not drive myself there.  I figured that I might as well get the CSM treatment over as it causes seizure attacks anyways, even with a 1/4 scoop loading dose of 1 gram.  And to my surprise, the attacks stopped!  I was still pretty wiped out though.  Perhaps there was a war going on inside my central nervous system and the victor was not yet declared.  So all I could do was veg out on the computer for a few more hours.  It sure beat the alternative of lying in bed shaking some more.  Maybe I should have tried to add to my 4 1/2 hours of sleep last night?  Oh well.  Decisions don’t come easy or get made well in this type of mental state!

Second, the progress:  my tolerance for CSM might be improving.  If it can stop the progression of a reaction then maybe I can take it without a reaction by itself.  I think I’ll give myself a day to recover then try to increase it to 2 doses tomorrow.  Lord willing, I may be onto something good!  And if that good lasts for more than 3 doses, well then we might actually have something really good.

CSM is a resin typically administered to lower cholesterol.  Persons with Lyme and mold illness use it in Dr. Shoemaker’s protocol to bind with mycotoxins that have a neurotoxin effect during treatment.  CSM removes the bad guys from the body (according to clinical research); there are some gastric side effects.  I was unable to tolerate it earlier this year during the stress of mold remediation of our home and had to discontinue even a low dose.

It’s dispensed as a very grainy powder with either massive amounts of sucrose or aspartame to cover the taste.  After calling 6 pharmacies and 3 drug companies last week (including being forwarded to an “off shore medical center” in India for one of them!) I hit a dead end trying to locate CSM without sweeteners.  Then a call to my favorite local compounding pharmacist revealed that the powder is indeed available but at incredible expense.  He would investigate further and get back to me.  In the meantime, the Massachusetts compounding pharmacy from which I get my VIP (vasoactive intestinal peptide) package arrived with a brochure that included CSM without sweeteners!  Their price is the same as what I pay for VIP.  It’s expensive.  Turns out that my local pharmacy cannot even purchase it for the price that the MA pharmacy would charge me.  Well then.  A plan is coming together.

Unfortunately my LLMD appointment was cancelled Friday.  I spoke with desperation to the not-so-friendly, overworked receptionist who notified me of the cancellation, pleading for an order for sweetener-free CSM powder from the MA pharmacy.  Have you ever given detailed information to someone on the phone then wondered if they were just pacing themselves on the other end of the line and not really taking any notes?  I had that feeling.  I had no idea if anything would happen until I could confirm everything with the phone nurse next week.  The weekend ended up with many wretched moments as I experimented with the sucrose-laden CSM.  Sugar feeds Lyme, Candida, and fungal/mold infections.  Not good.

So therein lies my caution with advancing CSM, my new wonder drug, until I have the sugar-free and aspartame-free version.  If I’m having mysterious trouble with sweet potato fries oven roasted in 3 types of organic cooking oil to offset the glycemic impact, then I ain’t gonna mess much with the sugary version.  Too bad that I get headaches with aspartame.  Or maybe it’s a good thing.  Aspartame can break down into formaldehyde and is associated with all kinds of health issues.  You know what they preserve dead corpses with right?  I’ll never forget the smell of formaldehyde from gross anatomy dissection lab in college . . .

Oops.  I’m on a bunny trail.  Well thank you for reading this rant and helping me to sort out a few things.  Since the recent expert evaluation of seizures at a major university hospital didn’t yield any new information, I’ve been wondering what the heck to do next.  A person with hours of multiple wretched events per day keeps looking for answers you know, with the brain cells that are left firing in the correct sequence.   The Lord has definitely powered the sustaining grace of this renewed  pursuit of CSM and any mental ability to write about it.

Oh, and some other progress:  just finished the final edits of my upcoming eBook Hope Beyond Lyme:  The First Year.  I’ll do a final read-through and copyright check then publish it online.  Stay tuned for some more good news!

Yeah Lord for anything good that happens from here!  Your strength is shining through once again.  This vessel is broken, cold, and quite spacey.  Help me finish the race you have set before me and publish this work you have created in me.  In Jesus’ name, amen.

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UPDATE:  The CSM is on it’s way across country from Massachusetts to Indiana!