Tag: chronic illness

Treatment Update

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outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter.  If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down.  But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied.  Ha!  I would love for my personal scale of symptoms to be at zero.  I would love for the intangibles wreaking havoc in my life to be less than nothing as well.  But that is just not how it is.  This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day.  That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity:  about 3 days each week.  That stinks.  I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living.  Steve had to physically care for me (from toileting to feeding) about four times each week.  This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens.  An occasional meal out with Steve has ceased.  There even was a blow-up with my Doc in which he suggested I might work with someone else.  He admitted that he doesn’t know what to do.  Fine.  But who else would that be?

So here is my status:

  • Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well.  Flare of systemic Candida is one possibility.
  • Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
  • Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
  • Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
  • Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
  • Social isolation continues to be a problem.  I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
  • An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive.  There are often episodes after eating and I do not know why.
  • Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome.  I bring my own sheets and graciously they avoid fragrances around me.  They are saints!
  • Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days.  Recent exceptions:  two wakes!
  • Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
  • Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile.  Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well!  Oy vey.

So now my pity party is over and I have nothing left to say.  I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle.  Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief.  My husband Steve carries the burden of all of this in his own way.  He is a saint and my hero.  Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going.  Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes.  Yeah God.  However I am very stressed about the upcoming holidays.  Maybe there will be a “Christmas miracle” at our house too?  Lord willing, the numbers in my life will improve in a positive direction.  In the meantime I will be hanging tough.  It’s the best I can do.  JJ

senior numbers

Let the numbers tell this story

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While the numbers in my college statistics courses were fascinating and I applied them well in my Master’s thesis, I must admit that math was never really my forte.  I’ll blame it on Mr. Courtright!  Our Algebra II/Trigonometry course in high school was a constant source of frustration!  John and a couple of the other male students would pour over the text book with him at the front of the room trying to understand the lessons he was supposed to be teaching that day.  Yeah, you got that right:  high school seniors trying to figure out advanced mathematics on the fly!  I am so very glad that I never again had to sit through a traditional math class after that one!

Statistics are a different genre though.  Statistics often tell a story that we can use to make sense out of the stuff of life.  For example, landing one standard deviation from the mean (the average) in a bell-shaped curve can help us feel like things are going to be o.k. most of the time, in the right scenario of course!  Enter here special numerals applied to my recent trip with Steve to Georgia and South Carolina that will tell this story better than I can even without a calculator!  Oh how I wish some of these were more comforting than the majority of them though . . .

Over 7 days of camping in 2 locations, I was unable to leave the travel trailer 3 of the days due to illness.

My beloved Steve attended 2 of the 3 family wedding-related activities in Georgia and I attended zero.

We travelled over 2,000 miles in my truck with our 67-pound German shepherd, Elle, settled sweetly behind the jump seat of the King Cab.  Such a great traveler she has become!

I prepared about 96% of all of my own meals making this trip more of a “business as usual” affair than vacation in the realm of food.

One hour of the five that I spent in our friends’ home on Monday was spent in continuous convulsive episodes on their couch.  Thankfully the two young children had already gone off to bed when I crashed; graciously the three adults prayed over me for the Lord’s tender care as we all go forward from the significant stressors in our lives.

The kids and I planted 32 daffodil bulbs the morning we left South Carolina, overplanted with dozens of anise hyssop seeds.  Hooray!  By Springtime the view from the kitchen window of their log cabin will be alive with flowers interspersed amongst the numerous towering pines.

daffodils, mini daffodils, buttercup flowers, Spring flowers

A threatening wind storm with gusts up to 40 MPH forced us to leave a day early for safety towing our Camplite on the highways to get back home.  Just a few minutes after we arrived home at 4:00 a.m., the winds increased again closer to the estimate of 50 MPH by morning.  We had blown in just in time, praise the Lord!

Nearly 4 days have passed since we got home and I have yet to clear out, clean out the rest of the trailer as needed after a week of travel.  Steve completed the first 5 loads of laundry and about 3 more are left to go.  I have been sick in bed for most of the past 3 days, sleeping in late to recover from the nasties which characterize this wretched illness.

Over a dozen doses of a new anti-microbial treatment (Biocidin LSF) have brought both relief and a flare up of symptoms at times:  begun when travelling and continued back home when seeking a new direction, new relief, new hope for a future without illness.  Two violent convulsive episodes followed on Friday after an appointment with a new specialist and a new lab test, respectively.  Many more filled the 2 days that followed.  Perhaps this week (and 2 weeks shy of the 4-year anniversary of the first waking seizure attack) there will be an answer to end this suffering?  The odds are wearing thin lately for sure.

Yet through it all, I am reminded of the 3 days that my Lord and Savior, Jesus Christ died and paid the price for all the negative numbers, the heartaches from what is not right in our world.  He knows the mathematics of it all greater than I can ever imagine and holds it all tenderly in the palms of His hands, ready to redeem it for good when He comes again in glory.  I choose to believe the promise that His precious thoughts towards me and you too, Gentle Reader, outnumber the grains of sand on the earth (Psalm139), giving us hope for a better tomorrow.  For as He thinks fondly of the ones He loves, He also promises to wipe away our every tear someday (Rev 21:4) when the time is right:  when time is no longer numbered in eternity with our Heavenly Father, God.

And that my friend is a story worth writing about.  A world without limits.  A love beyond measure.  I just hope that when all is said and done, when it is time for rejoicing in the heavenly realms, that you will be there with me there too?  Let not these numbers be wasted!  Won’t you accept the love of Christ into your heart this day, this night too?  Oh how I hope so dear one.

With love, JJ

From the Do It Sick Chef: Let’s make something that resembles lunch!

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The first video of my Do It Sick Chef series is now available on Vimeo!

In “Let’s make something that resembles lunch,” I literally get out of bed to make real food in a real kitchen that includes:  a veggie-n-meat entrée, ghee butter, and roasted turnips.  Roasted turnips?  Yes, you got that right!  Special diets require new and sometimes unusual food choices.  Just Julie will show you not only how to make these dishes but how to prepare the food saving money, time and energy.

Future videos that are already in the works will cover the topics of freezing foods for easier meal planning, a stand-alone segment on ghee butter, kitchen organization to save energy, and more.  You are invited to “Like” my Hope Beyond Facebook page to keep up with future videos and share your meal planning, preparation, sanity tips too.

Take care, Gentle Reader.  Lord willing, those of us battling serious illness are going to get well!  JJ

No Day But Today

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A long time ago I made a decision to use the word “love” a little more freely.  That decision came with another which was to not let concerns of what others would think of that get in the way of expressing that love.  For example, if it was a female friend then she would get that the “love” was within the context of loving a fellow believer in Jesus Christ, love like a sister that I never had, and possibly a bond that simply comes with walking through many years of life’s ups and downs together.  The transition would be instant, from “Take Care” at the end of an email to “Love, Julie” if we had just endured a crisis together.  When one heart is hurting, there is no other word that will suffice.  Love covers things well.

Born again believers know the author of love as God himself.  The scriptures instruct us that:

19 We love because he first loved us. 20 Whoever claims to love God yet hates a brother or sister is a liar. For whoever does not love their brother and sister, whom they have seen, cannot love God, whom they have not seen. 21 And he has given us this command: Anyone who loves God must also love their brother and sister.  1 John 4

The Lord is the perfect reflection and expression of what love looks like.  I do believe that those who are not in Christ have a sense of what love is like too.  That is why I feel comfortable including a video in which 1) two women are kissing and 2) there is a man dressed as a woman embracing another man.  If the relationships were real, they must have a sense of connectedness to express their love outwardly.  I am not condoning homosexuality.  I just might understand it a little more since my late Uncle Fred lived and died within the context of “the gay lifestyle.”  I still loved him despite this decision.  Oh how I wish he and others knew the deeper spiritual connectedness that comes in a God-fearing and God-honoring relationship!  The Lord blesses those Who love him first!  (Hebrews 11:5-7)  But that is not my focus here today.

My focus is the importance of expressing love everyday to those you care about.  It’s not weird!  I am reminded of this today in the middle of 8 days in which my husband and I will attend two funerals.  I had only met his Uncle Don one time and was more “acquainted” with Dave than knowing he and his wife Jane more “personally.”  It didn’t and does not matter.  As fellow believers in Christ, their character and lives had impacted my life with that level of connection.  Uncle Don warmly accepted my marriage to Steve that had come at a time when most of Steve’s children still could not.  Since I knew without a doubt that the Lord was blessing our marriage, it was refreshing to feel loved by his family.  I thank the Lord for this.

Also when Steve and I married and started to attend his church home, he pointed out couples with strong marriages that he wanted to model our relationship after.  Dave and Jane was one of them.  They had been married for decades by then yet still had a sense of fun, a spark, and a deep love for one another that was palpable.  They worked separate jobs outside of their home yet were usually together at church and other important events.  Dave served the body of believers, his community, his employer, and his family with equal enthusiasm.  Thank you for pointing out this great example of a Godly man, Steve.  And yes, you are much like him for sure!

Today I am unable to attend Dave’s funeral service due to complications of a serious, ongoing illness.  Last night was particularly wretched.  I had a sense that it would be risky to go to the funeral home and be around so many people and potential exposures that trigger convulsive episodes.  I went anyways. I am also in the middle of re-shuffling my treatment plan and have no idea what made things so much worse.  The only good part about that hellish 2 hours was the toning of my abdominal muscles from flexion posturing, writhing, seizing, moaning, and more.  Oy vey.  In the middle of it I asked for the Lord to remove this hell.  I begged for His mercy.  It must have come since at some point I passed out and woke up about 7 hours later . . .

Today I am beat up from all that has transpired in the past day.  Somehow I am still alive!  Though my heart is heavy with grief on many fronts, I do not regret pouring out the strength that I had to be with friends in their time of need.  I got to be out with my beloved husband and do one of the important things of this life.  Going to the wake reminded me of the truth told a gazillion times before:  there is no day like today.  There is nothing like love between two people, magnified and blessed when they are one in Christ.  And lest it be forgotten or unknown, it is important to express that love out loud and often.  For me this includes the love of my Lord and Savior, Jesus Christ.  For just as it says in the song,

I die without You!

Talk about perfect love! Oh Gentle Reader, won’t you join me in sharing a little love today? 

With love, JJ

How do you measure a year?

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September 18, 2014 was a day when I rediscovered the power of friendship at a new level.  ‘Tis fitting that we would spend our time reading the Psalms as we shared our lives with each other then tenderly prayed together.  Perhaps this is what women who love the Lord Jesus Christ do, eh?  Except that we were not meeting for a weekly video Bible study at church followed by coffee and treats.  This one touched our hearts more at home . . . literally!

In the past I have enjoyed Bible studies the best when we all meet in each other’s homes.  There is no better way to fellowship than to be immersed in the family pictures, dog hair, and dirty dishes of the ones you come to love in Christ.  In due time the host and hostess let go of having a clean house for everyone each week as we focus on what is really important:  opening up the truth of God’s word.  Prayer time was always my favorite.  The bonds between us became palpable as we lifted up each other’s hurts and victories before the Lord.  I do hope we glorified Him in doing so.

When serious illness struck my life October 11, 2011 my life slowly changed to one of almost total isolation.  Oh there were many visits to medical professionals, clinics, labs, hospitals, and pharmacies.  They were all very nice people, of course.  Going to Walmart became a rare “date night” with my beloved husband when I could not drive myself.  The highlight of my week often became buying groceries; somehow I ended up spending a little more money there than I probably should have perhaps in an attempt to find some alternative type of comfort.  Somehow new pair of sweats or comfy top would jump into the shopping cart on occasion as well!

Then the Lord inspired me to break the isolation beyond this blog.  I had some casual connections to a few of you Gentle Readers which delighted my soul, by the way.  How could this become more personal?  I published a blog in September of 2014 asking if anyone would be interested in starting up a Bible study/prayer time via Skype?  Perhaps there were other gals out there who were largely homebound like me and ready to connect before the Lord’s table.  Two gals graciously responded:  YES!

Each of us had different reasons for coming together.  Each of us had our own blogs and followings, outside interests, and experiences with our health.  We represented 3 different decades of life, 2 different countries and States, living situations either outside larger cities or in the country, and only one blonde.  (She is gonna kill me for writing that!)  We bonded quickly.

One gal who joined our group to be an encourager ended up facing one of the biggest health battles of her life this past year.  Two of us went in and out of relapses with illness and one endured a major upheaval in her husband’s job situation.  Two of us have also met face-to-face twice with hopes of a giggly reunion of all three of us perhaps this year?  I hope so!  Together we (have) cried, we laughed.  We prayed; we shared silly stories.  There were exchanges of recipes, websites, scripture, and more. We were encouraged by the love stories of the Psalms ministering to our feminine hearts.  And most of all we became friends.

So how do you measure the value of a year in life?  As this passionate theme song from the movie Rent speaks of sunsets, cups of coffee, laughter, and sighs, I do know that on Thursday night we three have shared them all this past year.  I agree with the chorus line to:  measure your life in love.  Because of you my dear ones, my year was richly blessed!

Thank you ladies for changing my life and ministering to me in a way that has made a difference.  May the Lord be glorified in all that we say and do, all that we write, and in the prayers that we lay before His throne of grace each week.  In the meantime,

“I am going to Rome.”

You two know what that means!  Happy one year anniversary!

Seeya next time ladies.  Love you, Julie