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 Waiting Game

TREATEMENT UPDATE:  The new doctor I saw on Monday ordered more tests.  My treatment plan is thus delayed.  My response to high CBD hemp oil waxes and wanes.  At least it prevents seizure attacks most of the time when I am in a completely controlled environment and can arrest them some of the time when they break through.  But if someone enters my bubble at home with but a speck of perfume or exposure to mold in a water damaged building then there are fireworks!  So I’ve got three more weeks of guessing what the heck to do . . .  Holding on and talking to the Lord a lot.

Or holding it?  Gotta laugh too.

The Waiting Game
The Waiting Game

Yes, no, and wait

They say that the Lord answers prayers with three responses:  yes, no, and wait.  I believe I have experienced all of these in a big way this past week!

Yes.  The answer was “yes” to the question of whether or not I would like to be admitted to the Indiana University (IU) Methodist Hospital Neurology Unit.  After an intense appointment with a neurologist in the IU Neuroscience Center, Dr. R. offered an overnight “observation” stay for a video EEG.  The hope was to capture the tic and seizure attack episodes to clarify my diagnosis and treatment.  So with the clothes on my back (since we were 2 1/2 hours from home), my husband and I followed the epileptologist’s advice and proceeded with the admission procedures.  I’d had 2 hours of sleep the evening before and a major episode in the office of the neurologist that morning.  Surely I was primed for plenty of episodes as the day progressed!

And that is exactly what followed:  at least a dozen more full blown or brief episodes captured on video with dozens of electrodes glued to my head and a heart monitor attached to my chest.  The rest of my Tuesday was wretched.  One good part was finding some food to eat on the hospital menu fit my Candida diet, yes!  The staff was nice.  Many unfortunate frustrations occurred as well; you’ve heard enough of those on this blog so I won’t elaborate.  The biggest frustration was seeing the inpatient neurologist twice for about 60 seconds each time he visited my room.  He never looked at my MRI films or my medical records!  His job was to do the EEG study and nothing else so that’s all he did.  Perhaps that is all I could take anyways?  Who knows.

No.  I do not have epilepsy.  O.k., my Lyme/mold literate doctor kinda knew that already.  The hospital neurologist said I needed to follow up with the Neuroscience Center neurologist for treatment or any next steps in my care.  The answer was also “no” to having one of my 3x/week IV magnesium infusions while the IV was still in my arm.  I usually have a tic or seizure-like episode when it is inserted or removed so I was grieved when they could not help me with this; I would need to make up the appointment at Dupont Hospital in Fort Wayne, back home.   The nurse pulled the IV; another episode followed, off camera.

There were plenty of other “no” replies over the 24 hour stay in the hospital.  Perhaps you know what it is like?  I was ordered to be on bed rest and fall precautions, tethered with multiple probes, monitors, and a bed alarm.  Geez.  At least they let me use the bathroom after initially forcing me to take a bowel movement on a commode in the room within view of the video cameras.  Geez again.  Eventually I was too exhausted  to care if the back of my hospital gown flung open.  Finally, after 2:00 a.m., I got 7 straight hours of sleep.  A miracle for an inpatient setting, no less.  Thank you Lord!

Wait.  These past 2 days since returning home have required patience with myself as I recovered from the whole ordeal.  My dear husband drove a total of 5 hours two days in a row plus participated in the neurology appointment on Tuesday and completed a partial day of work on Wednesday.  Steve is a saint, I tell you!  So we both have waited for our bodies to recover from exhaustion.  I will need to wait to speak to the neurologist at the Neuroscience Center as well.  Her nurse was not able to return my phone call Thursday or Friday.  Steve and I are waiting and wondering what’s my treatment plan?  Do I have one?

My heart is breaking with another project that must wait at the moment:  publishing my eBook:  Hope Beyond Lyme:  The First Year.  I need to transpose the final edits into the document formatted for publication.  I’m about 3 hours from pressing the “go” button!  This must wait until I can concentrate better.  I just feel too traumatized and drained by the hospitalization experience.  Perhaps it’s all I can take now anyways?  Who knows.

I do know one thing:  writing is one of the best therapeutic agents for me to come back to my senses!  I am sooooooo grateful for you, Gentle Reader!  You keep me sane!  I am grateful to report that I had a 27-hour reprieve from noxious events yesterday and two less events overall thereafter.  Being away from home and in the hospital (with a limited pharmacy for supplements and compounded medications) forced me to go off most of my prescribed treatments.  This may have been a blessing in disguise!  I’ve started an elimination schedule, gradually adding back one item at a time and recording my symptoms.  Turns out that one of my supplements is made from mold!  Chucked that one last night after a bad episode.  Not sure what caused the one tonight.  Oh well.  It was around 10:30 p.m.  I always have a severe episode then anyways.  Got any ideas?

Yes.  No.  Wait.  Perhaps this week is no different than any other with these three answers to prayer, to the desires of my heart.  I am so glad that I can trust the Lord with any answer that comes from Him.

1 John 5  14 This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. 15 And if we know that he hears us—whatever we ask—we know that we have what we asked of him.

And when the answer does come, the one we have hoped for with longing and expectation, it can be as joyful as a wedding celebration:

John 3:29 29 The bride belongs to the bridegroom. The friend who attends the bridegroom waits and listens for him, and is full of joy when he hears the bridegroom’s voice. That joy is mine, and it is now complete. 

I am somewhere between the themes of these two verses, knowing that He cares for my needs and has a Divine plan that includes all of the events of this past week.  In the meantime I must keep my eyes focused on Him lest they wander to places that will get in the way of healing.  I will rest in the promise that has meant so much to me these past 10 years.  His love prevails and will carry me through all that is to come.  Perhaps it will encourage you too?

Romans 8  38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Blasting through the block

Just do it!

Carpe diem!

Go for it!

He who hesitates is lost!

What’s your excuse?

I don’t have a good excuse.  It’s simply a case of a block in creativity.  When I feel like crap-o-la-ski (there’s my Polish again) for days on end, I do not “create” new and exciting things very well.  Even my writing gets a little bland and I start posting pictures of green frogs saying cute things!  You saw that one, right?

So today I have a jewelry order due and I’m stymied by this block thang.  So today I will employ the only strategy I have the energy for:  a little cleaning, a little organizing, a little reviewing of records, and a little blogging.  Then if I can get myself to turn around from the computer and linger over my home studio area, surely the creativity bug will start to buzz a bit . . .

Gratefully, the Lord placed some fresh ideas in my mind earlier today when I was laid up in bed recovering from some noxious symptoms.  Receiving a gift of some new ideas without even trying to make them happen is a blessing indeed!  I guess all that time spent wandering around Pinterest, a LinkedIn jewelry forum, and watching You Tube videos last month probably helped some too.

Yeah, that’s the ticket!  If you can’t go forward, go sideways for awhile.  Like dwelling in the grace of my Heavenly Father.  Allowing His love to wash over me prepares me for all He has in store for me whether good, bad, or indifferent.  Often these days there is no label for the hours that pass, they just pass as I lie on the bed recovering from this or that, looking out the window at the variegated dogwood bushes on a sunny day.  Maybe I’ll just focus on the soft leaves waving to me in the wind and woosh of their “hello, how are ya?”  I’m sure if they could talk, the crimson branches would say that to me.  No one else is around so they wouldn’t be talking to anyone else, would they?

Oh no.  Did you see what just happened?  The creative juices started flowing again as I continued to write!  Better turn around quick and find some pink hemp cord before the inspiration leaves again.

Let’s see, it was a Breast Cancer Awareness bracelet for my sister-in-law’s friend, right?  Gotta go.  Seeya later!  :J

Breast Cancer Awareness Bracelet
Breast Cancer Awareness Bracelet

Author’s Addendum:  24 hours later, we have this fun wrap bracelet now available at Trinity Jewelry by Design.  Feeling some better and love this new direction!  :J

DSCF8965

Keeping Calm

Jesus Calms the Storm

22 One day Jesus said to his disciples, “Let us go over to the other side of the lake.” So they got into a boat and set out. 23 As they sailed, he fell asleep. A squall came down on the lake, so that the boat was being swamped, and they were in great danger.

24 The disciples went and woke him, saying, “Master, Master, we’re going to drown!”

He got up and rebuked the wind and the raging waters; the storm subsided, and all was calm.25 “Where is your faith?” he asked his disciples.

In fear and amazement they asked one another, “Who is this? He commands even the winds and the water, and they obey him.”  (Luke 8)

This is such a great story isn’t it?  The newbie disciples did not know that there was no way that they could drown with the God of the universe in the boat with them!  And further, the story illustrates the omnipotence of God, that even the raging seas obey Him.  This story also reminds me of a message from Pastor David Jeremiah in which he taught the truth that a person in the middle of God’s will cannot perish until the Lord’s work is completed in him or her.  “Cannot perish!”  Wow.  Sure makes my fears and worries worthless.  If I could just remind myself of these truths in the midst of my own storms then surely I would be a better instrument for the Lord . . .

I might have made some progress last night.  Allow me to explain.  When reeling from 1 1/2 hours of relentless seizure attacks, I eeked out to my husband, “I need help.”  Within moments were on our way to the emergency room of a local hospital.  All I could think about was, “thank you” to Steve and, “I’m going to get help.”

Getting that help took a long time.  First there’s the registration, then the review of the bazillion supplements, compounded medications, and meds, and the $100 emergency room co-payment.  The ER Doc asked a few questions, called my family doctor, and a nurse started an IV.  200cc of fluids and some pain meds began to flow through the sore IV line in my frail forearms.  And amazingly within about 20 minutes, the seizing stopped.  Praise the Lord!  I actually started to feel sort of normal.  Even the neck headache from the thrashing of my head went away.  Wow.

What I did not expect was the diagnosis.  While I am not going to go into the details here, I will say that I was shocked.  Both Steve and I did not agree about what was written on the page.  Sensing the anger rise up within me, gratefully, I started to pray instead:  Lord, help me to handle this as you would.

I asked to speak to the ER Doc and expressed my concerns.  He said that to change the diagnosis would be fraud.  I believe that I respectfully disagreed and stated that as a licensed healthcare professional myself, I understand both the responsibility of medical documentation:  to get it right and to respect the future implications for the patient.  I thanked him for the treatment that stopped the seizures.  Later I chose to “qualify” my signature on the discharge instructions in a way that indicated that while I received the discharge paperwork, I did not agree with its contents.  Then we left.

It is now 28 hours later and I have not had another seizure-like episode!  Praise the Lord!  The “seas” remain calm and I was able to get some restorative sleep; I even caught up on a few errands this evening with my pup in tow.  I have begun some online research related to my experience of the past day and started pounding electrolyte replacements to keep myself hydrated.  My Lord is the only one who knows what the next day holds for me . . . will I make it to an unrelated doctor appointment tomorrow or even a quick outdoor outing with my hubby mid-day?  Or will the attacks return as I lie on the bed a few minutes from now?  The latter has been my life for virtually all of the past 1 1/2 years . . .

Keep calm.  Keeping calm.  Trusting that the Lord who calms the seas can not only get me from this evening to the morning, He can get me through all of the stormy days of my life.  Oh Lord, care for my beloved Stevers as well and restore Him from the stress of riding things out in the rocky boat with me.  May we both keep our eyes fixed on you with amazement for all that you have done and all that you have yet to do in our lives.  Thank you for the help.  I will entrust you with the details as I lay them at Your throne of grace.

Goodnight all,  Just Julie

Psalm 121

psalm 121 3