Just Julie Treatment Update

Brief update:  I seem to be in what an airline pilot might call a “holding pattern” lately.  When I can break through the perpetual feeling of sickness and get myself out of the house, even if it is to our backyard, there’s always a backlash of noxious symptoms.  Recently my chiropractor recommended a heavy metals blood test and after a month of getting the paperwork and procedures right we have the results:  high potassium and very high mercury.  Yipes!  So my husband and I are investigating chelation therapy.  I have an appointment with a Doctor of Osteopathy who provides chelation and other medical, nutritional interventions.  In the meantime I’ll check with my family practice physician and see if there’s enough data to proceed with caution.  We will be covering this in prayer.  For most folks chelation is a difficult journey.  But hey, I’m familiar with that already, eh?

More details:  The daily 2 to 5 hour waking seizure attack episodes continue.  One day each week the episodes exceed 8 hours on and off during which I am largely bed bound.  If I have pushed myself to complete heavy gardening tasks or more than about 2 hours of appointments outside of our home then the episodes can increase to 12 hours.  The rest of those days is pretty worthless.  I have at least two “worthless” days at home each week anyways, regardless of my activity level.  These are days where I pretty much take advantage of the lovely “3 hots and a cot” afforded by our home.  I may see you here at the computer and mope through other very sedentary tasks.  Dinner may or may not get prepared.  Thank goodness for my homemade freezer meals and frozen burritos for Steve on days like these!

The normal sleep-wake cycle remains elusive for me.  When I do go to bed around midnight it is usually because Steve has carried me there in the neurological collapse-mode of a seizure attack.  This happens twice per week.  I’ll pass out at some point thereafter only to awaken in less than 4 hours, usually with another episode of tazoring.  Many days the tazoring wakes me up in the middle of the night.  Good grief!  That’s what happened last night prompting this blog.  When I do wake up in the middle of the night I have to find a way to yank myself out of bed or they will continue indefinitely!  This also happens twice per week on average.  The other nights I endure an episode sometime between sunset and midnight then I am wide awake until 4:00 a.m. or so.  If I can wait until I feel sleepy then the episodes falling asleep will usually be shorter and sometimes not at all.  I love it when the latter happens!  The best schedule for me then is to be up late, go to bed and sleep until noon-ish, endure a shorter waking tazoring then attempt to move forward with the day.  I love days when I do not have any appointments that disrupt this schedule!

The only “treatment” I can tolerate at the moment is a strict diet, coconut oil, colon hydrotherapy to detox, and extreme mold avoidance.  Occasionally I can take a short walk late in the afternoon or use our elliptical for 5 minutes, usually in the middle of the night before bed.  My diet is mold-free, gluten-free, sugar and sweetener-free, dairy-free, and low oxalate.  The latter has produced some detox reactions that appear to be beneficial; bone broth is incredibly nurturing to my digestive tract.  Most medications, pharm-grade supplements, and typical detox/immunity foods (such as lemon water, probiotics, ground flax seeds or oil) produce convulsions.  Not good.  This syndrome has a name:  Chronic Inflammatory Response Syndrome or Multiple Chemical Sensitivity.  The good news is that my gut health is better than it has been in a long time.  That tells me that the dietary strategies are working!  There are times when I feel more alert and my thinking is clearer.  At times my memory is better.  To my delight the creative juices are flowing again as reflected in my latest designs at Trinity Jewelry by Design.  And sometimes I am even able to make jewelry during the daytime instead of just with the crickets outside the window of my cute little studio area . . .

October 11th will mark the 3 year anniversary of becoming sick.  (For more on that story, see the About Julie page.)  I’ve been off from work for 2 1/2 years now, the longest since I started working in at the Penny Candy Place as a teenager.  No work or disability income is in sight.   The Lord has provided for my every need through my gracious husband and His grace.  Through it all Steve and I have been challenged to the ends of our human strength through unbelievable trials yet somehow feel closer to each other and to the Lord than ever before.  Steve is my hero!  DSCF0245We trust in Proverbs 3:5-6, Psalm 41:3Psalm 71:14, Revelation 21:1-8 and more.  The Lord is faithful to His Word:  we have seen it, we hope in it, and His living Word carries us through it all.  Even in those split seconds when it feels like my heart, my breathing, and my brain waves have ceased to function and I do not know if life will continue for me, I am no longer afraid.  That’s how real the hope of heaven, the reality that my eternal life has already begun as a child of the King, the loose grip I have on the things of this earth are to me.  Oh Gentle Reader, can you say that too?

So many unknowns fill our days.  We can respond with woe and fear or we can respond with FAITH.  And our faith is only as strong as that to which we apply it.  I hope that you will join me or have put your faith in the omnipotent God over all.  Yes, I wrote all. 

Nothing less will do when faced with the next, er, bite in the shorts.  You know I had to say it didn’t you?!    :]

 

You have made a difference!

I am grateful for the love, care, and support of some special folks who have helped me make it through nearly two years of serious illness.  I am also sad for those who have left my life or misunderstood this time in my life.  Hardship is not contagious folks!Mom's 75th B Day Party

First, the good stuff.  The person nearest and dearest to my heart is my beloved husband, Steve.  I am amazed when I gaze into his blue eyes at the sincerity of his love for me and for the Lord too.  When he comes close and holds me through a tough episode, cradling my neck in his hands to comfort me and minimize the trauma of various noxious symptoms, I am humbled!  There are not many people on the planet that would do this even for a loved one two years “down the road.”  Many would become exasperated, angry, indifferent, or worse by now.  Thank you Lord for this amazing man.  Thank you for my “Jesus with skin on.”

The next group of folks closest to the fire, so to speak, who have helped me to survive are my Lyme Literate Medical Doctor and our local Lyme disease support group (who are largely his patients).  You understand!  You get it!  And you believe me!  When my Doc calls me on a Saturday with the name of a pharmacy where I can get a medication almost $100 USD cheaper, I am grateful!  When it’s my turn to share at our monthly Lyme group meeting and my tummy is happy from the yummy snacks we bring that fit our special dietary restrictions, I feel loved!  And then when we exchange text messages or Cindy, or Roberta or Diana offers help with a special task, I am humbled.  Oh how I pray I may serve you too in your time of need.

A few dear friends and family members have witnessed and endured much of the past 10 years of this incredible journey of transformation.  I love the kind of relationships that go on no matter what life brings, picking up when we meet again as if no time has passed.  I hope my brother Mike, Brenda, Deb, Kinsey, Patrice, Mary, Judy, Maria, Tami, and a few others feel the same way?   Now that my parents and grandparents have passed away, I appreciate even more my extended family including my Other Mom, Other Dad, Uncle Dave, Aunt Lori, Aunt Patty, and Aunt Shirley.  I love you and thank you for investing in my life.

There’s a special place in my heart for the online community.  Whether I met you on a Facebook Lyme forum, your blog or when you commented on my blog, I credit you with keeping me sane at the odd times of day when no one else cares!  Thank you for your “likes,” for following this blog, for your comments and suggestions, for your time.  The greatest gift from a friend is a gift of his or her time.  When you reach out to me I know that I am not alone.  While the internet can be a ruthless place, I am grateful for it’s goodness, especially when I am awake in the middle of the night.  It’s pretty cool that my buds in the UK or West coast of the US are online when I am!  Please let me know how I may return your kindness.

I’ll save the best for last.  In the interim, I’ll briefly state my sorrow for those who have chosen to leave my life.  He or she will not be reading this so I won’t waste much white space gushing this or that emotion.  I am grateful that when I have endured hardship in the past, I learned the importance of letting go of the people, places, and things that leave my life at these times.  Perhaps saying goodbye makes room to welcome the blessings that are to come?  Thank you for all that you have taught me.  Godspeed, dear ones.  I’ll be here if you want to stop by for a chat or walk around the block in the future.  As for the things, well they are just things.  So long.

And now for the best:  the One who knew me and my frame before I was born, fearfully and wonderfully made by Your guiding hand.  (Psalm 139)  I love you Lord and thank you for saving me from my path of destruction as a young woman.  I praise you for crafting the incredible events of my life to bring me more blessing than I could have ever imagined in the middle of my journey on this earth.  While I do not fully understand the sorrows that have come, I am convinced that You hold my tears in your hand, counting and caring for each drop, every pain.  I have never felt alone.  Thank you Jesus for bringing me to Your throne of grace where I may dwell in Your presence now and forevermore.  Grow my trust in Your promises, Your plan for my life, Your will for me all that is around me in this world that is troublesome.  Come soon my Lord!

So for all of you and you and you and you and You who have made a difference in my life, I give thanks.   If I have screwed up somewhere, please let me know and consider forgiving me.   I want to make it right if I can.  And if any good comes from me, these blogs, or anything else, to God be the glory.  He is worthy to be praised!