Tag: illness

Countdown to Mayo

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I’m kind of freaking out over here. No really. You would think I was preparing to go for the biggest medical evaluation of these 8 1/2 years battling a serious illness, or something. Well maybe I am!

The little city that comprises Mayo Clinic: most buildings and surrounding businesses are connected via the underground Subway Level. You may never have to go outside in the cold!

Some of my medical conditions have flared a bit lately, requiring medication and distracting me from my primary goal at the moment: preparing for a consultation at the famous Mayo Clinic. I have SIX medical appointments this week alone, FOUR next week! Gratefully, the locations of these appointments have put me in the proximity of places from which I need to gather medical records; one of them proved to be timely in addressing the flare-up of an acute, stress-related condition: shingles! Thank the Lord I caught that one early! Ugh. And just about everything related to my care will have been updated by the time we leave for Rochester, Minnesota: the biggest snow belt of the United States of America! Not that I am stressing over that one as well? Maybe so.

My beloved is both helping and complicating the process with his energetic ideas, last-minute plans, and on again/off again pursuit of a better, new-used truck. Turns out we are letting the last one go for now. Yay! There are always extra expenses and things to do when you make a major purchase. Now is not the best time for us to buy a truck! We really need to think through this purchase a little more, focus on our trip to the “Mayos,” and get some other proverbial ducks in a row. Steve will still be off working hard and doing his various activities in the meantime before we leave . . . seeya for dinner or at bedtime when you return home my love. (Yes, we still have a very late household.)

What’s left to do:

  • Receive the medical records from the Doctor and 2 hospitals I have visited the most.
  • Organize and condense hundreds of pages of test results into about 50 pages, labeled in some meaningful way.
  • Confirm arrangements with the hotel who promises NOT to use fragranced products in our room prior to our arrival. So bummed that an Airnb didn’t work out nor the Serenity House Network.
  • Pack WARM clothing, dog food, new dog medications, numerous supplements and medications for me, and enough food to get us through the first few days in the northern tundra. Gratefully our hotel room will have a kitchenette; it’s too frigid for our usual mode of camping via our “mobile clean room.” Most important on the packing list of my beloved: cross-country skis! I may take my snowshoes as well.
  • All the other stuff you do when away from home like laundry, placing he mail on hold, watching the weather here to have the snow shoveled when we are away, watching the weather there to confirm suitable road conditions, and the like. Should be less work than camping for sure!

While this process is exceedingly stressful when still battling a serious illness with bad convulsive episodes virtually every day, I am exceedingly grateful for the opportunity to got to the Mayo Clinic. Thank you Lord! It’s rated the best hospital in America! The top Doctors in the area of autoimmunity and neuroimmunology conduct research and see patients at the Mayo Clinic in Rochester. I have heard first-hand from some of my new Doctor’s patients and they state that he provides excellent care. Yay!

I am also glad that I did not go the Mayos 3 years ago when I was looking for new answers to troubling medical questions. Since then, we have further tested and treated for Chronic Lyme disease, lowered my burden of heavy metals, healed from various dental procedures and treatments, investigated numerous other potential infections, addressed/ongoing orthopedic issues, completed a comprehensive cardiac work-up, and even received genetic testing and coaching. It’s been a busy 3 years! All of these conditions could have explained this horrible illness but they did not. Good news: I can now tolerate more of the supplements and medications that are needed to re-build my health (which was impossible to do without triggering convulsive episodes in the past).

My prayer has always been that something of value would come from over 8 years of daily struggle. The Lord has been faithful to see us through even the darkest hours where demonic influences were palpable, suffering greater than I can even describe. Both Steve and I have been tested beyond what we thought we could ever bear yet the Lord has met us, sustained us, even carried us. There were sweet moments along the way that served to encourage us. We understand that others have been encouraged by our testimony as well. Yay God! Overall, these past 3 years preparing to go to the Mayo Clinic certainly were not wasted, that is for sure. It’s time to rally for a cure.

Let’s hope so, eh Gentle Reader? We are hopeful again! JJ

Twas the morn of endo

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Twas the morning of endo

And all through the house

Not a creature was stirring

Not even a louse.

The kind buried deep inside

The caverns of thy bowel

Who knows what’s it’s name

To be extricated via trowel.

I digress to my gardening

Terms instead of “incision”

For to bear more pain, discomfort

Is not something I can envision.

So to sleep, aye to dream

Via chemistry or exhaustion lo

We soon will have answers

Perhaps by time of ho, ho, ho!

Will this be a blessing

In disguise as gone before

Suffering giving birth to hope

We shall pray as inside goes the scope.

For H. Pylori messes the axis

Of the gut with the brain

And causes problems like mine:

Seizures on top of stomach pain.

Could this be the work of the Lord,

The prayers at once coming true?

Oh heck at least the deep snooze

Will be sweet on this Tues.

Will you still love me tomorrow?

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The question we simply don’t need to ask.

The question that I simply don’t need to ask again, yet have wasted too many moments wondering, is the one posed in this song by the Shirelles.  Oh and Dionne Warwick.  And maybe Amy Winehouse too.  Such a classic song!

Each time I wind up in the Emergency Room, I wonder if my beloved will still love me the next day.  This morning he referred to yesterday evening as “another date night!”  Unbelievable.  All this love continues after about 16 trips to the ER in the past 7 years.  I am humbled and blessed beyond measure.

This blessing is hard to see sometimes when my body is breaking down in a new way once again.  Looks like an ulcer in the lower part of my stomach is the reason for a month of abdominal pain.  Over-the-counter and walk-in clinic medications did not solve the problem.  So after a CT scan under the influence of anti-allergy drugs and some more potent medication, I am in less pain . . . but oh so worn out.  I’ll see a gastroenterologist this coming week with an endoscopy likely to follow.  Going to try to keep my stress level low in the meantime.  I mean I don’t have any other of the risk factors that contribute to an ulcer (e.g. spicy foods, caffeine, alcohol) unless of course there’s a hidden H. pylori infection.  So more testing is needed to figure this one out.

The other “love” that could be easy to question is that of my Heavenly Father.  But I don’t.  I look around and see tremendous blessings in my life in that I have a warm home in which to convalesce, enough food and clothing, and finances for the important stuff.  My beloved is faithful and loving like “Jesus with skin on.”  What I don’t understand is how these illnesses isolate me from friends and family outside of our home and most notably, my husband’s adult children. 

My extreme sensitivities continue and are triggered by the fragrant products they (and many folks) tend to use.  We are just not sure how to manage this reactivity with our Christmas gatherings rapidly approaching.  We already had to decline having both daughters stay with us (which was a delight to host them in years gone by).  A trial of having his oldest stay with us for about a week 2 months ago, despite extreme precautions, triggered a violent relapse in the convulsive episodes.  I am now sensitized to even trace amounts of fragrance on her coat that was kept in a suitcase in our garage in between scheduled visits.  Then I had a seizure spike 2 days ago when she returned from some travels to pick up her suitcase . . .

My heart is breaking from more than the loss of acquaintances and friendships:  my relationships with my husband’s children never really got going.  Steve and I have been married for 11 years and I got sick just 4 years into our marriage.  I have been battling a serious illness for most of our marriage!  You could say that my limited visits with his adult children gave them more time to adjust to the fact that their father is remarried.  Well, o.k. maybe that’s it.  I already sensed that I needed to lie low during their visits in the beginning anyways, focusing on serving them good food and comforts and not speaking up too much nor complaining when their Dad jumped to see them, rescue them when the trials of young adulthood came along.  No problem.  Fix the car?  Pick them up at the bus stop?  Join them at church?  I just had to stay home due to illness factors and couldn’t go with their Dad to help them, that’s all.

They don’t really know me either though.  We profess the courteous “love” greetings yet would I ever really see them again if something happened to their Dad?  Oh dear, I should not even go there.  I now realize that this barrier between us is completely out of my hands.  Remember when I sent along baked goods with Steve for when he visited his family in Arkansas without me 2 weeks ago?  Yes, I need to rest in the hope that what I could do has been done as unto the Lord.   My Jesus and my beloved know my heart.  They hold together the parts in me that are breaking and the inner tears.  And the Lord also holds me in tender moments like these right now.

I need to know that your love.  Is a love I can be sure of.  So tell me know so I won’t ask again.  Will you still love me tomorrow?

Yes, for sure.  JJ

Jeremiah, 31:3, everlasting, love, doubting, Christ's, Lord's, faithfulness,what He thinks of me, endurance, love through the trials

In a far-off land the LORD will manifest himself to them. He will say to them, ‘I have loved you with an everlasting love. That is why I have continued to be faithful to you.’

This but that, but this!

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The plan began with a desire to see my husband’s family for an upcoming holiday.  But gathering in Texas would require 2 very long days of driving for us, pulling a travel trailer.  One family member suggested we meet in Arkansas instead which would be closer to the university where a younger family member is studying.  Cut off one full day of driving for us?  Yes, let’s go to Hot Springs, Arkansas instead.

This plan continued with the hope that we could camp at the RV Park inside Hot Springs Village.  My Mother-in-Law has a house in the Village and we would be closer together.  But the campground will be under construction for the months of November and December to have sewer hook-up lines installed.  It’s going to be closed!  Yes, let’s go to an RV Park about 30 minutes away on top of a picturesque mountain top instead.

The plan originally included having Steve’s daughter travel with us then the idea popped up to have both of Steve’s daughters stay with us in our travel trailer.  Oh what a blast that would be!  We now have the room to accommodate them but I simply cannot do so at this time.  I was devastatingly sick for 4 days this past week when some new fragrances triggered my worst symptoms of Chronic Inflammatory Response Syndrome.  Geez, we don’t even know how we will have family over during the Christmas holiday let alone have them visit overnight when both are back in town.  (Our attempt in September failed.)  But to stay in closer quarters of a travel trailer while away from home in a less-controlled environment?  Yes, we want to be together but no, let’s at least travel and stay separately this time.  Again really.

This plan got even more complicated when planning our trip scheduled for departure not long after that horrific flare up last week.  I saw my newer Functional Medicine Doctor who spoke frankly and clearly:  I don’t think you should travel now.  What?  She said it would set me back even further, even if she could find a replacement for a treatment that contributed to the flare-up last week.  So her recommendation posed a dilemma for my saint of a husband who wants to see his elderly parents-n-family AND be with me.  Did I mention that our wedding anniversary is coming up?  But I really don’t want to be alone on a holiday much less our anniversary!  Yes, we want it all and may need to split up the holiday into a shorter trip, a shorter anniversary celebration.  We are used to compromises.

The planning behind the scenes for this month involved a recall notice for our new-to-us travel trailer.  We bought it after the original owner had it for about 3 months so we never got the national recall notice; it was for a safety feature that could pose a grave threat if not corrected.  We found out about the recall in a Facebook group!  Nineteen phone calls over the past 15 days resulted in a plan to have the recall work done at a local RV repair shop.  But it got too close to our potential departure date to get the trailer to the shop-and-back:  2 trips of 3-hours of travel each time.  Yes, we are no longer travelling with the travel trailer so we have more time now to get it fixed!

This trip required me to get the oil change and tire rotation for my truck that was coming due.  We just figured out that we were not travelling cross-country but I decided to get the maintenance done anyways.  On the way to dropping off my truck at the shop last night I HIT A DEER!  The impact trashed the right-front quarter panel and headlamp of my Nissan Frontier.  The turn signal stopped functioning correctly.  There is no way we could travel cross-country (which always includes nighttime travel for us) with a damaged headlamp.  Yes, you can see now that the door to travelling this holiday is now fully closed.

Nissan Frontier, deer, impact, hit, accident, crossed the road, Coldwater Rd., Fort Wayne, Indiana, white, truck

The plan may change to include my hubby travelling alone for a shorter time while I rest up; we are holding our breath for now.  But what if it snows?  He needs new tires on his car before the next time it snows, according to the professionals.  Yes, we will find $800 for tires if we need to . . . That’s about how much a longer trip would have cost anyways, if we helped with housing for Steve’s daughters.  Which we would offer, of course.

This but that, but this!  Such is life in this fallen world in which we find ourselves.  Many times I have said that when the trials have come, seemingly often of late, that I am holding out for the hope of heaven.  Heaven indeed.  The late Pastor Billy Graham wrote:

Paul wrote, “If only for this life we have hope in Christ, we are to be pitied more than all men” (1 Corinthians 15:19). But our hope isn’t only for this life! In the midst of life’s storms, our hope in God’s promise of heaven is “an anchor for the soul, firm and secure” (Hebrews 6:19).

He said that if we are ever going to live for Christ, then do it now.  I was reflecting on these themes when I was emptying the trash the other day.  I hit my head leaning over to remove the top of the can as the can was positioned between the toilet and the bathroom sink cabinet.  The top slid back behind the toilet, my head brushed against the toilet paper dispenser, and something fell back there too.  I wondered if in heaven things like emptying the trash would always go smoothly?  Then I realized that there is no trash in heaven!  We know this from Revelation 21:4 that tells us:

He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

I imagine that there will be no long days of driving with cracked headlamps, recall notices, endless phone calls to make things right, separation from loved ones, suffering, cramped bathrooms or travel trailers, worn tires from roads traveled, nor heartache in the dwelling place of our Lord, Jesus Christ.  This is a plan upon which we can depend for those of us who believe.  Now that’s a trip I’m already on.  How about you Gentle Reader?  JJ

A leaning, a leading?

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Palisades Reservoir, lead poisoning, testimonial, summer lake

So I’ve had increased convulsive episodes lately and especially since my beloved came home from a trip. There was fragrance on his person and stuff; that night and the next 3 days went poorly. We suspected the fragrances as a trigger and proceeded to clean everything multiple times. It was yet another sad and frustrating experience to endure yet not without some redeeming value.

Just prior to Steve’s departure for 6 days, I began a new treatment for a fungal sinus infection. I was tolerating it well and had the best 6-8 days than any in the prior 7 years! We were encouraged! 3 days into his trip I developed abdominal pain but attributed it to maybe some stress. It never resolved.

When Steve came home, there started to be convulsive episodes within 2 hours of this compounded sinus treatment. Since I have not tolerated medications for this condition in the past, I was pleased when a functional med Doc found a colloidial silver/EDTA preparation to try. The CS treats the fungal infection and the EDTA helps break up biofilms (which makes the infection harder to treat if missed) in addition to acting as a preservative. I decided to tough it out and continue with the treatment. Surely a chronic sinus infection could make me more vulnerable to noxious smells; the membrane between the sinuses and the brain is tiny. It’s why certain smells (like the baking of bread) can elicit such strong memories.

Lying down and tipping my head back also triggered episodes. Yes I have neck and cervical disc issues. The vertebral artery in my neck is positioned in a vulnerable way. Things are better overall with the improved positioning of my head/neck/jaw using specialized dental appliances. Recent application of specific vagal nerve stimulation techniques had helped both prevent and end convulsive episodes. But all of them became ineffective these past few days.

There appears to be another factor and today the Lord showed me what to do. EDTA is also a chelator of lead. For me, just starting a small amount of a detox agent triggers dumping of the respective toxin. Being post-menopausal and osteoporotic has brought increased lead toxicity noted in blood tests. I’ve already drastically reduced both levels of mercury and many other toxins discovered in numerous lab test, treated in numerous protocols. Today it was time to revisit the lead piece of this health puzzle!

It took quite awhile to communicate to Steve a plan of attack as my body was contorting, erupting in maddening/spontaneous screams, struggling to breathe and sequence the facial movements to produce words. My hands bent backwards into an arthritic/extension pose you might say resembled that of a zombie. My legs would flap together-and-apart violently and repetitively, uncontrollably. My head-and-neck and upper torso writhed in slow motion as I struggled to raise my body up to drink the concoction he would feed me through a straw. And finally when there was a break so I could breathe, sequence the oral-motor steps of swallowing, close my lips around the straw, and drink the potion we created:

Aloe water for gastric comfort
Full spectrum binder from Quicksilver Scientific called the Ultra Binder
Fiji water that contains silica that binds aluminum
Large dose of a zeolite product called CytoDetox for lead and any other heavy metals not covered by the Ultra Binder

I often respond energetically to rescue remedies; liposomals are especially powerful due to their rapid absorption into the bloodstream through the mucosal lining of the mouth. I held some of the liquid in my mouth, around the dental appliance. Then I drank more water.

It wasn’t long before the episode slowed then stopped. An hour later, my abdominal pain was half of what it was. Did you know that abdominal pain is one of the primary symptoms of lead poisoning? I suspect that the EDTA being sprayed directly into my nose and quickly being absorbed into my bloodstream got lead moving quicker than I could chelate out of my body on my own. The Ultra Binder has stopped episodes before. Why else would things turn around so quickly if it wasn’t due to a relatively acute toxicity?

We really want to be able to see family for the upcoming holidays without the heartache and drama of this devastating illness. Day by day we seek the Lord’s wisdom and pray for mercy, for healing. Just when recovery looks promising and there is relief, a horrific setback seems to follow. I can’t even embrace my husband right now for fear of having to pull away in another injurious, head-banging episode. Three weeks ago I went in and out of the worst emotional slump of these past 7 years then realized it was the lies of Satan himself I was believing. I covered it with the truth of my Lord, Jesus Christ Who has promised me in His Word a hope and a future.

So I have a new focus for treatment and looks like some really good tools are already on our kitchen counter, within reach. Will it be fruitful? I really don’t know. Tell you what though, I am still not giving up. There IS hope beyond what we can see and the proof lies with the empty tomb, the risen Christ, the reason for the Christmas season before us. And that keeps me going no matter what comes in the day, in the night.

I hope this is true for you too, Gentle Reader. There is hope beyond what we can see.

With love, JJ

UPDATE:   Functional Med Doc says it’s not the EDTA but a mold hit from raking leaves a few times recently.  I dunno.  I continued having convulsive episodes within an hour after the sinus spray treatment and had to stop it.  Time to regroup again!