Tag: Chronic Inflammatory Response Syndrome

Breakfast of Champions

Published on by Jesus is for the Wounded3 Comments

Keeping it real today:  it was the best breakfast I’d had in a long time.  Held me over for hours.  Can you believe it?

The ingredients were:  gluten-free oats, coconut/almond milk, ghee butter, lactose-free whey powder, 2 walnuts, and bacon!  Gee I often wonder if I need a ketogenic diet (KD) since I feel so much better after eating ghee butter and red palm oil spread by the tablespoonsful!  I’d like to try the KD when I can find the medical professionals I’d need to calculate ketones and monitor cholesterol levels in this middle-aged frame.  Otherwise it’s probably not a good idea long-term.  Until then, just please pass the avocado oil for my coconut cream and blueberry smoothie!

The “champion” this morning was not me, however.  My beloved Stevers was my hero as I was unable to move without eliciting seizure attacks in bed.  So he fed me.  Spoonful by spoonful of rich bliss came to me with breaks in between bites to catch my breath.  I was so depleted from another hellish night dontcha know that I needed to rest often.  And then I revived enough to take myself to the bathroom and return to bed for more sleep.  A brief noxious episode ensued, an indeterminate amount of sleep, and waking convulsions on the other side.  Holy cow!

My other hero today who kept me company when I awoke sometime in the afternoon was our pup, Elle.  She often watches over me these days, sleeping within view of the bed.  Next to Jesus Christ, I love having a friend nearby with fur-on.  That is true only if my friend with skin-on has to go to work!  My beloved got there 2 hours later today for having taken care of me this morning.  I am so grateful for his care and hope his boss understands . . .

The afternoon was slow-going as I progressed from being beat-up to stable.  I recovered quickly from a brief afternoon replay of this morning.  I am glad that thereafter I was able to finish the Fall clean-up for Winter and gather some anise hyssop seeds for a friend before lopping off the last of the spent garden beauties.  Then I plopped myself down in front of the computer for a few hours and was able to do nothing else.  My sewing project 2 feet behind me, due in 2 weeks, will wait once again.  Such is life in the preparatory stages of mercury chelation.  Working on kidney detox to aid the chelation pathway for inorganic mercury.  Hmmm.  Sure hope I clear before Thanksgiving . . . sure would like to travel to see some friends and family . . .

My heart is heavy with all of this.  Knowing my brother may be stuck in a nursing home for more months is a burden too.  His Social Security Disability Income will likely take awhile to be awarded even though the left side of his body remains quite debilitated from the stroke in April.  I am glad that he was able to go “home” with his fiancé for a few hours yesterday:  the first time since this all happened.  Finally!  Sish.  The occupational therapist in me has been frustrated more than once by the whole ordeal.  Therapy is on hold again for Mike due to Medicaid paperwork delays.  So life in a better nursing home is where he will be indefinitely.  Kinda sad, really.

In case this is sounding like a pity party I will end it right here.  Just keeping it real.  I still have that joy in my heart that I wrote about this past weekend.  I still have hope that I will be restored to health and probably land in an even better place a couple of years from now when the mercury chelation process has succeeded.  I still am grateful for so many blessings that were never in my life even one year ago.  I have a plan for recovery!  I still look forward to the simple pleasures that make life so sweet.  Ah yes, here comes our German shepherd wagging her tail from having played with my hubby in the front yard since arriving home from work.

It’s late.  It’s time for the dinner of champions, Steve and me.  And it’s a good thing I saved a little bacon for us too.  I mean who doesn’t love bacon?  JJ

DSCF0395

Just Julie Treatment Update

Published on by Jesus is for the Wounded5 Comments

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 41:3, Psalm 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?!    :]

 

High CBD Hemp Oil and Me

Published on by Jesus is for the Wounded2 Comments

So we had a great go of it, HCBDHO and me.

This past winter I gave it a try for about 3 months after discovering some research linking reduced seizures to consumption of a particular type of cannabis oil.  When I found out that there is an industrial hemp oil with only trace amounts of THC and that it would be legal for me to purchase it in my State, I purchased a bottle online.  I worked with the manufacturer and a couple of Facebook groups on dosing.  My initial results were very encouraging!

Within 2 weeks I required increased drops of HCBDHO to receive the same benefit.  This fit the profile of many other users of the product.  Some required nearly 1/2 bottle to stop their seizures even if a child was taking it.  There are lots of details here so I refer the Gentle Reader to previous posts by searching CBD oil on this site.  In general as time wore on, the benefits diminished no matter what the dosing.  Also in time I started having  bad dreams then bizarre nightmares.  The nightmares frightened me.  I could  not figure out why they were happening!  Then I read that some folks are sensitive to even trace amounts of THC:  the compound in cannabis oil that creates a high when taken in products that have a higher percentage of this cannabinoid.  Well I wasn’t having a good time at all!

Eventually I stopped taking HCBDHO altogether.  Now that I am sensitized to it, I do not intend to take it again.  The risk of altered thought processes in my precious sleep (that I desperately need to recover from these wretched daily seizure attack episodes) overrides the small improvements that remained after 3 months.  The benefits did not outweigh the risks.  I am majorly bummed that it did not work for me.  Nothing has worked for me.  No combination of things have worked for me.  I cannot tolerate treatment that works for others without ramping up to violent convulsions.  Detoxing is impossible without noxious, severe side effects.  Talk about being boxed into a dark corner without a flashlight.  Will hope ever shine through again?

Sure it will.  Lately I’m experimenting with magnesium threonate and may try a particular brand of Tahitian Noni Juice.   The latter helped Kurt and Lee Ann Billings, the authors of Mold:  The War Within, who did not do the typical protocols of cholestyramine, activated charcoal or benonite clay to get well.  Yup, all of those three caused me noxious, severe side effects as well.  Sish.  I am very glad that there are new things to try despite the dead ends of my medical team at the moment.  Thank you Lord that you are always my hope with or without Tahitian Noni:  my forever guiding light Who uses the hardships for Your glory . . .

So for those of you considering using high CBD hemp oil (from industrial hemp) or other cannabis products (from hemp classified as medical marijuana), I encourage you to learn all you can at informational sites such as the following Scientific Review of the research literature:    You are also invited to “Like” my facebook page which contains all of the pertinent research that I did when making my decision to try HCBDHO.  The articles include the legality of industrial hemp products and the difference between them and medical marijuana.  Here’s a link to get you started:  Seizure Free Zone on Facebook

May the Lord bless you on your journey too, JJ

Benefits of Hemp Pic

The 5 1/2 hour window of time

Published on by Jesus is for the Wounded1 Comment

Ready to head home with the 24-foot outrigger and ama on the roof!
Ready to head home with the 24-foot outrigger and ama (float) on the roof!

So grateful to be out with my River Bear!
So grateful to be out with my River Bear!

 

We came to a clearing in things and went for it!

These pictures were taken after a wonderful evening paddling our tandem outrigger canoe (OC-2) on Sylvan Lake here in Indiana.  How wonderful to be out on the water for a second outing with Steve this year.  I am so very grateful!

Sadly the evening ended worse than the earlier part of this day.  Tic attacks had started in the car on the 45-minute ride home.  Within an hour after getting home and unpacking the car I was feeling sickly.  We ate some quick salads before I scampered off for bed, still in my paddling clothes.  Low grade seizure attacks ramped up over the next hour, escalating into one of the worse episodes I have had in a long time.  Screams of terror filled our home.  The best that I could do was hold on and focus on continuing to breathe . . .

Eventually I was able to call Steve for help getting off the damp clothing and showering.  In my stupor and neurological collapse (requiring complete assistance to transport myself to the bathroom) I figured out that I must have gotten exposed to the blue green algae we encountered in the narrower sections of the lake.  I had taken numerous precautions to limit exposure to the water.  However, some simply cannot be avoided when splashing about, paddling from an open cockpit of an OC-2.  And perhaps the slimy green pond near the port-a-potties in the parking lot were releasing aerosols that were not to my liking as well?  I didn’t touch any food or the mouth of my water bottle since we did not have hand sanitizer with us.  I guess it wasn’t enough:  I am too sensitive to any form of biotoxin to get anywhere near them in any form until things change.

Thankfully after about three hours I regained motor control of my body.  I was better able to communicate and we processed what had occurred this evening.  Steve agreed that we probably need to limit paddling together to waters treated for algae, such as the private lake of a friend’s home.  This means not being able to join the local kayaking group outings on Tuesday night for the third year in a row!  That’s a major bite in the shorts!  To get strong enough to go out with them for two years was a major accomplishment for me and lasted until I got sick October 11, 2011.  Just getting into a kayak (and now an outrigger canoe, solo and tandem) simply had never happened before I married Steve.  We have so many great memories being a part of the group in addition to his kayaking competitions.  (Goooooo Steeeeeeve!)  Sigh.  And I was really enjoying the switch from a kayak to an outrigger, sporting my carbon-fiber bent shaft paddle too.  So awesome.

Last night I watched most of the video story again of Justin and Christa Vanderham.  Christa suffered from chronic Lyme disease and mold exposure for years before finding proper treatment with antibiotics, supplements, and nutrition.  A fellow sojourner in recovery and reader of this blog graciously reminded me recently that Christa’s illness looked a lot like the videos that I have posted here and on You Tube.  Yes, both our symptoms of distress appear wretched:  intractable pain for Christa and relentless seizure attacks for me.  We both scream at times due to our agony.  In chronic Lyme and biotoxin illness it’s not the exact matrix of symptoms that is so significant as it is making sure you have the right diagnoses and treatment protocols to get well.  We don’t say that we have different illnesses because our symptoms are a little different.  We do say that we both might benefit from similar aggressive treatment protocols if reasonable test data and clinical presentation indicate Lyme or biotoxin illness.  Unfortunately for me, EVERY SINGLE TREATMENT INTERVENTION exacerbates daily seizure attack episodes that average 3-4 hours per day!  I simply cannot survive the treatment protocols of which I am aware to date.  The multiple chemical sensitivities (aka Chronic Inflammatory Response Syndrome) already leaves me largely homebound to try and prevent noxious symptoms.  Lately they are on the rise again (up to 8 hours!) regardless of where I am or what I am doing.  When I take a 5 1/2 hour window of time when the symptoms subside and test the waters, so to speak, I usually pay dreadfully for doing so.  This gal just can’t get a real break I guess.  I keep trying the wrong things.  On the surface, you could say that I am out of options . . .

Regardless, this I know:  my Jesus goes before me and knows the desires of my heart.  He knows that my heart is breaking right now to realize that I can no longer be with my dear husband 2 to 3 days per week when he pursues his sport on the water.  I learned to kayak to be with my River Bear and was delighted to discover that I enjoyed it too (at a slower pace of course!).  My Lord knows how isolated I am when I am home alone because of this illness.  He has provided the safety and security of a lovely dwelling with plenty of time with my Heavenly Husband.  He was my best buddy before I met Steve; He saw me through life changes equally as traumatic all the way to the restoration process in due time.  I’ll be hanging tough and trusting Him with this door closing on open water activities, no matter how I may feel about it.  The fact is that my Lord and Savior loves me more than I can ever know.  He wants what is best for me.  I will wait with great expectation at His throne of grace for His plan for me, whether or not a new door or window opens in due time.  If I don’t lay down my will for His will then I will denounce all that He has shown me of His love for me in the past.  I don’t want to waste all that I have learned.  During those trials is when my faith grew to be what it is today.  That is when the Holy Spirit became real to me, guiding me and comforting me always.  Nothing can take that away from me.  Nothing will.

Gentle Reader, do you know faith in God like this through His son, Jesus Christ?  Please share with me your experiences if you do.  I know it will encourage me to hear from you in addition to other Readers.  Oh and if you could say a prayer for my Stevers that would be great.  He hasn’t been getting much sleep lately.  Thanks a bunch.

Better finish that mulching project in the gardens soon.  Love to you,  Just Julie

A different kind of measure

Published on by Jesus is for the WoundedLeave a comment

The risk of including the Seasons of Love You Tube video from the movie RENT in this blog is that this song will now be in my head for days and days!  Well maybe that’s not such a bad thing, eh?

There’s so much Avant guard in this movie that I must warn you that it is not for either the faint of heart or for those who limit their recreational viewing to strictly Christian genre.  This is fringe media at it’s best.  This movie recognizes that love exists in other forms in life.  While I do not want these other forms in my personal life, I do recognize that this kind of “love” provides some meaning for persons who do not understand the perfect love that comes from a relationship with Jesus Christ.  Hopefully persons like the characters in this movie will find that wonderful unending and pure love someday.  It’s worth the journey to seek something more than what you can see around you.  It’s a different kind of measure of “love” for sure that extends beyond any season of life.

What I also love about this movie is the passion for life of the characters represented.  I have lost most of this passion with the onset of illness 2 1/2 years ago.  Sure I might get excited about a small project or celebration here and there but I am never very far away from a wretched episode that takes the “life” out of the moment.  Today was one of those kind of days.  The weather was beautiful.  As a matter of fact we have had a beautiful Spring here in the Midwest with adequate rain for the landscape and farmers mixed with incredible 70-80 degree temperatures and plenty of sunshine.  Most days have had some moments of clear weather, making way for virtually all activities outdoors even if for a few hours.  Enjoying 2 weddings and related activities last week were largely met with a backdrop of blue skies.  For this we remain grateful.  The unfortunate reality of today for me was the sprinkling of wretched episodes of seizure attacks every 2-3 hours.  I don’t even know why they happened.  We have removed the known triggers in our home and in my diet yet here I am living in shorter moments of time within which I can function.  Such a bummer.  It’s a different kind of measure of life as most of us define it.  It is life measured by moments.

In particular I love the lyrics of this song because it describes how I must live my life these days.  “In daylights.  In midnights.  In sunsets.  In cups of coffee . . . ”  You can see that I live my life by the task, not necessarily complete activities.  For example the walk I am grateful to have taken with my beloved and our pup this evening required a standing rest break for some noxious symptoms.  We then proceeded home at a slower pace and with me dragging myself along with a somewhat altered gait.  Sish.  Can’t a girl get a break?  I’d love to get back into exercising regularly; I am grateful for a few minutes that the Lord has granted here and there late at night when I’m more stable.  That’s what I mean by tasks.  I guess that’s all I can do right now are some tasks with a few modified activities in the mix.  It’s a different kind of measure of “doing.”

So if this moment is all I have with you Gentle Reader, I invite you to take 3 minutes to watch the You Tube video.  Think about your day today as you hum along or maybe consider the one you anticipate tomorrow with a new perspective:   a different kind of measure.  And if at all possible I do hope you will measure it in love, treasuring the love relationships in your life above all else.  If you should choose to include a personal relationship with God in that collection, perhaps putting Him in His rightful place above all the rest then I assure you that the abundance of love that will return to you will be immeasurable.  Seriously.  He is infinite so His love cannot be measured!  I tell you that His love makes a difference for me on a Sunday night like this.  I pray that His love will make a difference for you too in this moment and all the rest to come.  :J