If I get to see you . . .

 

If I get to see you in the coming year, please understand that I will be singing songs of joy in my heart!  Social isolation has been one of the most devastating effects of serious illness from these past 3 years.  Should the Lord allow the circumstances for me to get out for an activity other than medical or a trip to the grocery store, I CELEBRATE!!!

So if I might ask for a few accommodations when we get together and you graciously oblige and I still get sick then blame any negative symptoms you may witness in me as the consequence of illness and not you!  Very few folks live in a “clean room” like we have here at home.  I did not clean at this level either until it was a matter of survival.  Steve did not engage in my extreme mold/contaminant behavior strategies until two years ago.  These strategies are necessary for this season of our lives together.  Overall I do better when we follow certain guidelines resulting in less reactivity, the worst of which are fewer seizure-like and convulsive episodes which continue daily.  We are implementing some “due diligence” from what we have learned to reduce my suffering with the goal of eliminating this illness altogether.  We believe that the Lord has allowed these trials for mysterious reasons and ultimately His glory.  He is good!

Both Steve and I recognize that there are definite signs that I am getting better.  We have trained our eye to search for even tiny changes in the pattern and intensity of episodes, pain, and reactivity to keep us hopeful that one day I will be well.  It is happening!  So please don’t be discouraged when either one of us might mention that I had a rough night or you witness a significant setback.  Recovery is a long, jagged line of progress, setbacks, and lateral “bunny trails.”  The overall trending is positive!

The most important accommodations that would be helpful if we get together are as follows.

Meeting in a public place:  Select a place with less noise and less loud music.  Newer buildings are generally better than older ones; please no historic buildings or ones with known basements or crawlspaces and history of flooding.  Restaurants that make their own food with fresh ingredients are better able to modify dishes to meet my food sensitivities.  This rules out most fast food places!  Letting me know the name and phone number of the establishment ahead of time will allow me to contact them with my needs and make the experience of ordering food more pleasant for both of us!  Please do not wear cologne or perfume that day.  I will need to greet you and depart with a “virtual hug” to avoid exposures to hidden elements that might be on your clothing or coat.  Forgive me if I sometimes forget this step in the joy of the moment when I see you!

Meeting in your home:  This is still a situation that I avoid since there are too many variables at this time that may cause serious problems.  I cannot come over if you have 1) ever had flooding in your home of any kind from a leaky toilet to a wet basement or 2) have older carpeting.  If you are willing to have me then please remove all fragranced products at least the day before we are scheduled to be together (such as plug-in or spray air fresheners, candles whether lit or not, potpourri, etc.)  Keeping windows cracked open in cooler weather or open in warmer weather to allow fresh air inside always helps (unless someone is burning something nearby outside!)  I prefer to visit in the area of your home without carpeting and sit on non-upholstered furniture.  Wood, plastics, and leather are best.

Staying overnight:  If we are invited to stay overnight then we will either bring our own linens, blankets and towels, or ask that you wash and dry everything in fragrance-free detergent and softeners (including dryer sheets).  Please replace a moldy shower curtain liner with a new one!  I will bring most of my own food and hand soap where possible.  Providing non-cured, non-smoked meat cooked only with salt, plain oatmeal, plain salad-type vegetables or zucchini/cauliflower without seasonings will be a HUGE treat!  I will always bring the extra condiments and food that I can tolerate.

Yeah, I know that this is a lot for a busy household to prepare!  Thank you for helping us out with this stuff.  Steve and I are exceedingly grateful to have recently obtained a travel trailer which has helped manage all of this tremendously well.  (It is a lot of work for us too, I tell ya!)  Both of our families and many close friends now live out of State so travel is necessary to see them.  This single change in our mode of travel has allowed me to leave our home overnight much more safely and go places from which I have been cut off for most of the past three years.  We are humbled and blessed!  I really like having a mobile safe house that has already opened up my world, provided privacy during setbacks on the road, and aided sleep with a really comfortable bed that can be hard to find when away from one’s own humble abode at home.  Thank you Jesus!

Visiting Daniel and Elizabeth in Alabama
Visiting Daniel and Elizabeth in Alabama

 

We are hoping that the ongoing extreme avoidance and dietary strategies are temporary; some level of precaution albeit more relaxed than the current level will likely continue for some time.  How long will we need to do all of this?  We simply do not know.  We believe the Chronic Inflammatory Response Syndrome (or Multiple Chemical Sensitivity) is due to mercury toxicity and we finally have the correct treatment protocols to get me well.  I have excellent medical guidance and a proven treatment plan to follow.  We are hopeful that I will be in better health within this year!  I AM GOING TO GET WELL!!!

And that Gentle Reader, is much to celebrate!  JJ

High CBD Hemp Oil and Me

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

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

The Burger on the Bathroom Floor

Sometimes there’s a bride carried in the front door at the same time there’s another bride carried out the back door . . .

Hi there.  My name is Julie and I have a wacky life.  Not that my life has ever been boring, mind you.  Lots of difficult things have kept me on my toes (or on my knees before the Lord) for a good portion of my days on this earth.  I used to say it was like cooking with all of the burners on the stove cranked up to the highest setting.  Then there was this network marketing book entitled, Mach 1 with your hair on fire that described things pretty well for me too.  Helen Keller wrote in her book The Open Door, “Life is either a daring adventure or nothing at all.”  O.K.  You get the picture.  There is no rest for the weary so get over it, get on with it, and better get right with Jesus to see you through!

So what’s up with the burger on the bathroom floor, you ask?  Balancing my blood sugar is a key part of managing this crazy biotoxin illness that came on the heels of Lyme disease that came in through the backdoor of fibromyalgia many years ago.  Actually hypoglycemia came first followed by hypothyroidism, fibro, yada, yada, yada.  This all requires me to carry a protein snack and water with me virtually everywhere I go.  Popcorn doesn’t cut it very long.  I cheat sometimes with fatty veggie chips when grocery shopping only to follow-up with a chunk of lunchmeat from one of those ziplock bags from the deli counter usually at a stoplight when driving home.  Whatever.  Who needs a knife and fork anyways?

Dressed up for the wedding of my husband’s son yesterday and our friends’ son today, I opted for the bigger black leather purse (to match my shoes of course and the only other purse I own).  I could stash a butternut squash coconut muffin, some coconut cream, and a burger-lettuce roll-up secured in a Ziploc baggie in there and look like all of the rest of the women with maybe a little extra, er, baggage, if you know what I mean.  Who would know that I could survive an invasion of body snatchers for at least a day with no more than a twinge of hunger when it was all over?  I would be ready.  Unfortunately I did not plan on a wardrobe malfunction (a term coined in the USA after an egregious moment by Janet Jackson during the Super Bowl Half Time Show a few years ago.  I won’t go into it here).  Or rather a leather purse malfunction.  I barely made it through my own snafu with my dignity!

The D.J.s were cranking up the music at the Light Guard Armory to add some ambiance to the large plain, cinder-block walled room with metal doors pained beige to match and linoleum flooring that had been waxed for more years than I have seen the light of day.  The host families had done their best to decorate the place with table adornments inspired by nature and set up a simple, yet respectable snack table for later munching.  I knew I probably wouldn’t be able to eat any of it (can you say M&Ms and Reeses Pieces for dessert?) so I settled into the scene comfortable with the stash in my purse.  Surely the burger was o.k. unrefrigerated for a couple of hours.  The only problem was that I was getting very hungry!

What’s a gal to do waiting with all of the other guests for the wedding party to arrive, dressed up in her Sunday best with low blood sugar looming and a burger in her purse?  Well I learned a long time ago that if you need a moment of solace you can always escape to the bathroom.  No one usually questions your actions in there!  It’s a little different story, however, if you are a gal since gals tend to chat while tinkling, primping, washing their hands, and adjusting their bra straps not necessarily in that order! How do you fit in whipping out a burger in your purse?  Answer:  you don’t.

The next level of defense is to squirrel away in a bathroom stall, quietly unwrap the nourishment of choice, and snatch a few bites while crouched between the open areas on either side of the door.  If someone “accidentally” sees you wiping your fanny through the crack by the hinge it’s o.k. but eating in there?  EWWWWWW!  No way!  But who really cares anyways if you haven’t used the toilet just moments before and the place is clean.  I mean my hands were clean.  Oh yes, and one must make sure that no one else has camped there in the past hour either, if you know what I mean!  Once you have your sequencing down, you can hide your medical self care in this way if you so choose just like a diabetic might do the same when administering insulin in a public place.  Sometimes it’s just better to take care of it in the one private place to which you can always retreat.

I did not count on what happened next.  I was one large bite from finishing my life-giving, 1/2 burger wrapped in Romaine lettuce with a wedge of coconut spread when the burger went tumbling onto the floor.  Oh my goodness!  Not my precious sustenance!  Suddenly I became acutely aware of how really wrong it is to bring food into a bathroom.  Then trying to eat it there even in secret no longer seemed like a good idea.  Years of preserving my sense of social graces came to a screeeeeeching halt!  There’s a burger rolling on the bathroom floor and it came from my direction! 

Of course I did not count on what happened next either.  Just then I heard what seemed like a gaggle of women entering the restroom.  Holy crap!  (Pun might be intended here.)  In a flash I made a dash to pick up the chunk o’ meat, rinse it off in the sink, hide it in my hand, murmur something like, “excuse me my stuff is in there,” and retreat back into the stall with whatever style and grace I could preserve in my moment of horror.  How could I ever have explained a burger rolling on the floor?  Never mind.  Nothing came to mind.  I stuffed the once delectable beef/bison griller into the open piece of Saran wrap in my purse and zipped it closed.  Snack time was over.  I would have to survive on the bites consumed thus far.  I thought I would be o.k. with that so I walked “looking normal” out of the stall to wash my hands then leave.  The two unsuspecting witnesses left with their curious glances, having never stopped their conversation during their porcelain activities.  Cool beans.  I was now in the clear and free to leave as well.

Sigh.  Some things in life are strange at times.  You just gotta do what you gotta do and laugh about it if you possibly can.  Gentle Reader:  the next time you grab a burger off the grill try not to think of me munching somewhere in a bathroom stall, k?  It just might change your appetite a bit.  If you do try adding some more spicy mustard and you will be fine.  I promise.  JJ

burger-cartoon-vector-graphic_1334753008057

 

My Top 10 List: Tools of the Trade

Top 10 List

I had a supervisor one time that said, “you are only as good as your tools.”  She was referring to the splinting supplies in the occupational therapy clinic that included state-of-the-art warming trays.  Thermoplastics used in making upper extremity splints must be heated to the correct temperature or they become gummy; they also might burn your patient’s forearm when it gets too hot!  They had a thermometer on the splinting cart which was a luxury in those days.  Now with so many choices of materials from which to choose at a variety of temperature specs, having the right tools is standard practice.

Splinting never was my forte but the advice stuck with me.  My words came back to me when the men in my life would often repeat this phrase when faced with a decision of whether or not to add to the man cave “tool box!”  Yeah, it was usually o.k. with me.  Usually a new kitchen gadget jumped into the shopping cart too.  🙂  These days my tools relate more to gardening and my own health care.  Here’s a new spin on the latter:  your recovery is only as good as the tools you employ for recovery.  This post is an addendum to an earlier blog entitled, Keeping Sane While Recovering from Serious Illness.  With some tools that are tongue-in-cheek and not necessarily in this order, here goes:

1)  Treatment journal, online or in a notebook.  Keeping track of medications, supplements, medical appointments, changes in treatment plan, etc. is critical to success.  Who wants to make the same mistake twice?  My hand-written journal entries are more truncated these days since I’ve got my routine stuff down better and more social supports in place.  I do go back to earlier postings and am grateful for some progress.  Even if I am not doing better in other areas, I know that I am coping better overall; thank you Lord!

2)  Smart phone.  When stuck in bed I can still stay connected to the outside world via my social media favs, email, and text.  The Bible App is awesome and keeps me in the Word on a daily basis with its Bible-in-a-Year reading program.  On my mobile I can also look up what the heck is going on in my body and boost my lame brain with reminders of this or that on my calendar.  I was a late-adapter to the world of 4G+ and cannot see going back to a flip phone anytime soon!

3)  Fingertip less gloves.  My hands and extremities get chilled in the evening.  It’s a battle trying to do a few things when I am awake and feeling better in the middle of the night but feel like I’m freezing!  The drop in body temp can trigger noxious symptoms so I needed to find a strategy for keeping my hands warm.  I was Christmas shopping at Macy’s this past year and there they were in a colorful display:  a table filled with mittens that had removable mitts so you could expose your fingertips.  Your hands stay warm from the middle knuckles through the wrists.  Success!  These even come in handy when taking frozen foods out of the freezer or grocery shopping.  Grocery stores give me the chills year round.  Know what I mean?

4)  A really warm fleece jacket with pockets.  For the reasons noted above, I finally have something to keep me warm when roaming about the house later in the evening.  The softness of the fabric is comforting too.  What did we ever do before Polartec?  Or maybe for you it is a handheld fan?

5)  Fuzzy socks!  Yes they are warm.  It’s the cute designs and fun colors that make me smile a little when my feet are cold.  My cow socks (which were a gift from when my Aunt Patty lived in Vermont) are my favorite.  The thicker the better, over the ankle, and loose-fitting too.  Such a simple pleasure.

6)  Breakfast from a traditional lunch bag.  Mornings are the hardest for me.  Most days I awaken in elevated pain with noxious symptoms that make it difficult to use the bathroom let alone make breakfast.  Finally the Lord led me to a solution of making my breakfast the night before much like I used to make my lunch to take to work each day.  The freezer pack keeps it cold until morning.  Many times I am eating food cold that others might microwave/heat up before mealtime but that is not a requirement for me anymore.  I just gotta get food in my belly to feel better so a chunk of meatloaf for breakfast it is sometimes!

7)  Making the effort to cook or purchase special snack foods that fit within my restricted diet.  For example, I think I’ve finally mastered coconut flour pumpkin (or squash) muffins to comply with my Candida/mold-free/low oxalate diet.  Pulling a little essence of home-baked goodness out of my breakfast bag in the morning with Earth Balance Organic Coconut Spread, I no longer feel deprived!  The recipe is a bit challenging so I double it and freeze them for yummy goodness each morning.

8)  Emergency remedies on hand at all times.  For me this includes high CBD hemp oil and a charcoal-filter face mask that have arrested an oncoming seizure attack when in a public place more than once.  We need to be proactive in managing the crises of our health condition where possible, saving the real emergencies for situations beyond our control, eh?

9)  Slip-on shoes and slippers.  Who wants to bend over and risk falling on one’s head when weak from illness and needing to cover one’s feet?  Yeah, not me either.

10)  Something or someone warm and fuzzy.  Yes, this can include the stuffed kind or your man with generous amounts of chest hair to comfort us when needed.  (O.k. maybe your lady in soft flannel pajamas would apply here instead!)  When my beloved is not home our German Shepherd pup gets a little extra massaging.  Who knew that a big, protective dog breed would love to cuddle?  Elle, you rock.

Well there you have it:  my top 10 list of recovery tools.  Have some of your own?  I’d love to hear about them!  Please feel free to add your comments below.