Tag: mold

The Next Step is Sideways

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Sometimes you move forward.  Sometimes you move backward.  And most of the time you just go sideways or don’t move at all!  Know what I mean?

When I worked in rehabilitation we had another phrase:  recovery is always a jagged line.  A person makes progress then might regress a step or two before making the “big gains” in strength, walking, functioning, and the like.  Many times my patients would not believe me when I said this to them.  I understood their frustration.  In our fast-paced, achievement and results-oriented American society, it is really tough not to be getting ahead in some way every day.  Well as the old Starkist tuna commercial used to say, “Sorry Charlie.”  Sometimes it just doesn’t work out that way.

Not only does every person not always get where they want to go, not every person gets selected to try for his or her dreams.  These can be a real bummer for sure.  How we handle these delays or changes in the course of our lives may likely determine our character.  Certainly how we respond reflects our maturity as adults, or for Christians, whether or not we are trusting in the Lord who promises a plan an purpose for our lives (Jeremiah 29:11).  While there are probably other reasons we could explore ad nauseum, I’m going to leave it right here.  Ultimately we must get over the failure to achieve the goals we have set for ourselves when it just isn’t going to happen.  You just never know.  Something better might be on the horizon . . .

Several times I have planned to complete a special project and was never able to start it.  (This has happened a lot over the past two years!)  In general, the main reason wasn’t even procrastination.  The reason often has had to do with the reality that something better is waiting for me in the future.  Take my decorating idea folder, for example.  About twenty years ago when our drapery panels in our living room became damaged from the sun, I really wanted to create a custom window treatment that I’d seen in a magazine.  Somehow I would need to design a tracking system where the wall met the ceiling before such systems were even available.  We didn’t have any wood shop tools at the time and I was unfamiliar with the fine art of making draperies.  However I did know how to sew and had a creative streak so that was enough for me to move forward and figure it out.  Sadly, it wasn’t meant to be.

The townhome got sold with the sun bleached draperies pinned from behind to hide the sections that were threadbare.  The problem?  My former husband doubted my ability to complete the project.  Where would we get the materials?  How would we install it?  Where would I find the time to make everything?  All of the ongoing questions discouraged me from trying to find the answers.  A creative person makes something happen along the happy journey of figuring it out.  He or she doesn’t have everything worked out at the start unless there is a pattern or kit with instructions.  This decorating project simply was too much for the two of us to come to an agreement.  It wasn’t meant to be back then.

Flash forward about ten years later and it was meant to be.  Through unfortunate circumstances I found myself single and rebuilding my life in another city; so much had changed.  To pursue a creative project would become “occupational therapy” for me and help me to make my new place a home.  I knew exactly what window treatment would adorn the sunny sliding glass door that overlooked the lush courtyard beyond my balcony.  This time the time was right.

A co-worker told me about a textile company that sold unbleached muslin by the pound.  Yeah, that’s right!  Yards and yards of fabric would be super cheap and just right the right color and style for my project.  I even found material to line the panels all through that poorly marked, rusted back door entrance to the factory.  There were huge bolts of fabric everywhere!  “Yeah God,” I said to myself.  This is good!

The next challenge would be measuring and cutting an inordinate amount of material on the laminate floor of my 3rd floor condominium.  To say my knees were hurting from crawling around cutting all that fabric, would be an understatement.  Then I wondered how was I going to sew all this yardage at my modest kitchen table?  The answer soon came when I was house-sitting in a lovely home a short time later.  The man of the house was a contractor and had a HUGE desk in his office for viewing his drafting plans.  That desk was perfect for sewing yards and yards of fabric too:  spilling all over the place in their spacious loft.  Cool beans.  I sewed and sewed to my heart’s content.  Cool beans again.

Now to make the tracking system to suspend the panels next to the ceiling.  Somehow I stumbled upon a lumber store just off the railroad tracks in an industrial area of a neighboring town.  The guys at Owl Lumber in Lombard, Illinois were great.  Not only did they help me configure the crown-molding style curtain rod, they metered the corners and pre-drilled the holes for the mounting pegs for me as well.  I installed about a dozen pegs into the crown molding, sanded, painted it white, and coated it with polyurethane.  Now all I had to do was mount it on the wall . . . without a ladder . . .

Gratefully I had an extremely sturdy coffee table that became a suitable platform for the installation.  (You simply could not kill that wooden beast so it followed me through 8 moves over the years.  Finally it got sold on Craig’s List 5 years ago!)  I got all the tools and supplies together, my friend Jeannie came over for dinner and a little window treatment project, and we gals went to work on a Friday night.  The only problem was that the building was over 30 years old and there was concrete not wood studs underneath the drywall!  My wood screws would never hold the weight of the solid wooden rod that measured about 8 feet long.  Oh well.  Back to the hardware store I would go for mega concrete bolts and a new drill bit.  Of course I had a darn good drill that would handle the job.  🙂

The next hurdle was the fact that Jeannie was not available the next weekend to jump back into the project again.  What was I do to?  How could I possibly wait when I was this close to pulling it all together?  This thing was massively heavy and I was hoping to mount it at a height that would require me to hold it at a height near the end of the reach of my arms overhead.   How could I do this alone without dropping it on my head?  By sheer will power and determination, that is!  I figured out the measurements of the holes for both the wall and crown-molding rod and pre-drilled the holes.  I figured that if I could slip in a few bolts by hand and tighten them, they would hold enough for me to get the rest of the bolts in as well.  I also used my head . . . literally!  And with only one close call, Lord willing, I gotter done!  Success!

The finishing touches to hang the panels were beautiful silky-type cording that I found at a local drapery supply store.  Wow:  so cool to live in a large city at the time where I found a place where practically half of the store was drapery trims and tassels!  I made a loop and tied it with a Josephine macramé knot, reminiscent of 20 years earlier when it was first vogue to macramé.  I was single then too and had macrame’d lotsa stuff!  Hand sewing the loops to the panels was a labor of love, quite meaningful for me.  Then I was ready for my big reveal to, er, myself.  Would it all come together?  You be the judge.  I loved it!  To open it each morning I gently draped a loops hidden on the backside of the middle of the bottom of each panel to hooks on the wall along the outer sides of the panels.  At night I released the loops and the panels closed like the massive curtains at the end of a theater stage play.  Yeah, it was cool.  Yeah, it was worth the wait.  I was stoked and thanked the Lord for restoring the years the “locusts had eaten” once again.  (Joel 2:25)

That's me in 2007
That’s me in 2007

This is an important story for me to remember years later.  I’m in a situation now where I can’t do projects like this as I recover from a serious illness.  I am grateful for the Lord’s gift of writing and the warm reception to my eBook released a couple of weeks ago (see side panel for details).  Just this morning I was wondering what would be next?  Then I realized that I really can’t do anything more right now.  The book got finished because I had some better days; those days are gone for now.  I’m hoping to catch up on some long overdue regular medical appointments like an eye exam tomorrow morning.  EEEEK!  Will ya look at the time?  Anyways, these next few weeks I won’t be moving forward.  I’ll be taking care of the stuff on the back roads, so to speak.  Perhaps there will be other types of meaningful discoveries along the way, perhaps not.  For now, the stuff of life has my time and attention.

Maybe you can relate?  Whatcha got going on this week, Gentle Reader?  Do take care, k?  JJ

From one extreme to the other

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So much of the self-help genre coaches the weary traveler in achieving a blissful and balanced lifestyle.  When I was an occupational therapist working in psychiatric hospitals, I would often lead a patient group in a goal-setting exercise entitled, “Achieving a Balanced Lifestyle.”  It was always my favorite therapeutic activity to do.

Each patient received a worksheet with the title at the top followed by two large circles, one at the top of the page and one at the bottom.  Both circles were divided into the same 5 sections labeled:  Physical, Emotional, Social, Intellectual, and Spiritual.  The exercise began with the group members filling in each section of the top circle with activities that fulfilled that particular need.  For example, Social might include visiting friends and Spiritual might include Bible study.  Often patients struggling with mood disorders had very little in the emotional and social areas.  Persons with depression had very little on the page at all.

The lower circle was for goal-setting.  My hope was to help the individual begin to see beyond the crisis that led them to the hospital and think about what he or she might do during the day to use time effectively as a coping strategy.  I only asked for one activity in each of the sections.  Of course we had already brainstormed a list of activities as a group and these were written on a large white board at the front of the room.  Eventually each person had a plan and something to share with the rest of the group.  Since so many things are discussed in a person’s life during a short hospital stay, I asked each person at the end of the session to name just one activity as a starting point.  Virtually everyone was able to identify something, a place to begin.

Geez, if I were to complete my own plan for achieving a balanced lifestyle, I wonder where I would begin?  Let’s see, I’d have one worksheet for a sick morning and one for a stable afternoon.  Then there would be another for when I’m most likely to be functional in the middle of the night and another during IV magnesium treatments at the hospital three times per week.  I might be tempted to tear the page in half and add various goal-setting scenarios based upon my feelings at any given moment.  IN OTHER WORDS, setting goals sometimes just doesn’t work!  My best intentions are often met with a 180 degree turn of events.  This requires me to live in the moment on a moment-by-moment basis!

Last night was a crazy example of this.  At 9:00 p.m.  I was with my husband sitting around a campfire outside at our friend’s house roasting hotdogs over the fire.  Within the hour we all were wielding shovels and pitch forks emptying the bed of my back truck of yard waste into a ditch on his property.  But within another hour I was writhing on a bed seizing with convulsions, unable to speak or move very much at all!  The next hour was filled with my husband providing virtually all of the physical care needed to transport me to the bathroom, wash away the sooty residue from my hair and tender frame, and bring nourishment for me to eat huddled under the covers in bed.  Sigh.  So what was my goal by the end of the night?  Get up to use the toilet with my own strength.  Check.  Goal achieved for the Physical section of my paper-and-pencil exercise in my mind.

Almost every day is like this.  Yes, I’ve had 3 days with no seizure episodes in the past 3 weeks and there are about a half a dozen fewer episodes per week overall.  I guess if I could stay in my safe home bubble, I might be able to knock down a few more.  Yet after 2 years of illness I tend to forget and “go for it” when I feel stable, trying to get out of the house to do something meaningful not realizing that the setback pushes me back to “Ground Zero” of the recovery process.  The goal is to not react at all.  Each reaction re-sets my immune system at some arbitrary level, sensitizing me to be more vulnerable to the next exposure.  I may be able to anticipate that exposure and I may not.  Sometimes the cause is hidden.  When our friend placed a log covered with some type of blue fungus on the fire, I had a feeling something bad could happen at some point . . . but we were having fun  . . .

Such is life in the world of Chronic Inflammatory Response Syndrome when you have a genetic disposition that is vulnerable to mold illness.  I have no idea anymore where the Lyme disease fits into the matrix of illness.  Right now the focus is on the mold illness.  And today the focus was on recovery.  Then this evening I got a do-it-sick burst of energy and spent 3 hours washing the composted dirt out of my truck!  Later I made dinner, kale chips (yes & they are pretty weird actually), and a lamb/turkey meatloaf for tomorrow.  I’m sitting here sore, pleasantly fatigued, and sensing a pre-tic syndrome rising up from within.  And so it goes from one extreme to another once again.

Perhaps a better exercise than filling out a worksheet would be to meditate on some Words of wisdom:

5 Trust in the Lord with all your heart and lean not on your own understanding; 6 in all your ways submit to him, and he will make your paths straight.  (Proverbs 5)

Many are the plans in a person’s heart, but it is the LORD’s purpose that prevails.  (Proverbs 19:21)

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  (Jeremiah 29:11)
In their hearts humans plan their course, but the LORD establishes their steps.  (Proverbs 16:9)
So I end with my charge in all of this:  Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ.  (Philippians 1:27)  Whether it’s with tears hidden in the soapy shampoo water or standing outside in the dark soaked with silt-laden overspray from the tailgate of a truck, I will lean into my Jesus for the strength to carryon.  This kind of power is supernatural.  There is no way I could endure all of this and persevere on my own; I am too broken.
I wonder if you have been there too, Gentle Reader?  Have you been in a place where you must do something but you cannot do anything?  This is the very place to come before the throne of grace and meet Jesus, face-to-face.  His infinite love will transform the moment beyond what we could ever imagine, ever wish for, ever plan for.  We only have the moment in which we are breathing anyways.  When your time comes as I have described mine here, I do pray that you will reach for the One who understands and can make a difference now and forever in the course of your life.  His loving presence will transcend the circumstances and lead you forth, with purpose and meaning.
He did it for me.  He does it for me every day.  Perhaps He has carried you before you even realized Who or What was guiding you?  He is here for both of us, transcending the extremes of our times.  I can think of no better way to achieve peace.  Can you?

Good News!

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LeteverythingthathasbreathpraisetheLordPsalm150_6The seizure attacks have diminished from 3-4 per day for up to 4 hours each (and all night long every 10 days) to 1-2 per day.  This is huge!  Praise the Lord everyone out there!  Praise the Lord!

Progress not perfection: it’s all in the details

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One of the slogans of the 12-step program is the title of my blog today.  Progress not perfection is my sentiment as I sit on the precipice of either potential progress or doom.  Or maybe it will be that it was doom and is now on its way to progress?  This is a mini treatment update.Progress Not Perfection

First, the potential doom:  I am reacting to most foods, supplements, meds., and treatments in a noxious manner lately.  Then, out of the blue I took a 1/4 scoop of sugar laden cholestyramine (CSM) to attempt to counteract the convulsions that came with 1/2 cup of homemade, oven roasted sweet potato fries.  I had added coconut oil and a clean protein to my quick lunch to balance any extra carbohydrates from the sweet potatoes.  Not sure if it was the carbs or some latent mold in the potatoes but I was down for the count, so to speak, within minutes.  I had a more delayed reaction to them and a couple of other things consumed together yesterday so I wasn’t that concerned.  Mistake.

So I cancelled my 2:00 p.m. IV magnesium treatment; I could not drive myself there.  I figured that I might as well get the CSM treatment over as it causes seizure attacks anyways, even with a 1/4 scoop loading dose of 1 gram.  And to my surprise, the attacks stopped!  I was still pretty wiped out though.  Perhaps there was a war going on inside my central nervous system and the victor was not yet declared.  So all I could do was veg out on the computer for a few more hours.  It sure beat the alternative of lying in bed shaking some more.  Maybe I should have tried to add to my 4 1/2 hours of sleep last night?  Oh well.  Decisions don’t come easy or get made well in this type of mental state!

Second, the progress:  my tolerance for CSM might be improving.  If it can stop the progression of a reaction then maybe I can take it without a reaction by itself.  I think I’ll give myself a day to recover then try to increase it to 2 doses tomorrow.  Lord willing, I may be onto something good!  And if that good lasts for more than 3 doses, well then we might actually have something really good.

CSM is a resin typically administered to lower cholesterol.  Persons with Lyme and mold illness use it in Dr. Shoemaker’s protocol to bind with mycotoxins that have a neurotoxin effect during treatment.  CSM removes the bad guys from the body (according to clinical research); there are some gastric side effects.  I was unable to tolerate it earlier this year during the stress of mold remediation of our home and had to discontinue even a low dose.

It’s dispensed as a very grainy powder with either massive amounts of sucrose or aspartame to cover the taste.  After calling 6 pharmacies and 3 drug companies last week (including being forwarded to an “off shore medical center” in India for one of them!) I hit a dead end trying to locate CSM without sweeteners.  Then a call to my favorite local compounding pharmacist revealed that the powder is indeed available but at incredible expense.  He would investigate further and get back to me.  In the meantime, the Massachusetts compounding pharmacy from which I get my VIP (vasoactive intestinal peptide) package arrived with a brochure that included CSM without sweeteners!  Their price is the same as what I pay for VIP.  It’s expensive.  Turns out that my local pharmacy cannot even purchase it for the price that the MA pharmacy would charge me.  Well then.  A plan is coming together.

Unfortunately my LLMD appointment was cancelled Friday.  I spoke with desperation to the not-so-friendly, overworked receptionist who notified me of the cancellation, pleading for an order for sweetener-free CSM powder from the MA pharmacy.  Have you ever given detailed information to someone on the phone then wondered if they were just pacing themselves on the other end of the line and not really taking any notes?  I had that feeling.  I had no idea if anything would happen until I could confirm everything with the phone nurse next week.  The weekend ended up with many wretched moments as I experimented with the sucrose-laden CSM.  Sugar feeds Lyme, Candida, and fungal/mold infections.  Not good.

So therein lies my caution with advancing CSM, my new wonder drug, until I have the sugar-free and aspartame-free version.  If I’m having mysterious trouble with sweet potato fries oven roasted in 3 types of organic cooking oil to offset the glycemic impact, then I ain’t gonna mess much with the sugary version.  Too bad that I get headaches with aspartame.  Or maybe it’s a good thing.  Aspartame can break down into formaldehyde and is associated with all kinds of health issues.  You know what they preserve dead corpses with right?  I’ll never forget the smell of formaldehyde from gross anatomy dissection lab in college . . .

Oops.  I’m on a bunny trail.  Well thank you for reading this rant and helping me to sort out a few things.  Since the recent expert evaluation of seizures at a major university hospital didn’t yield any new information, I’ve been wondering what the heck to do next.  A person with hours of multiple wretched events per day keeps looking for answers you know, with the brain cells that are left firing in the correct sequence.   The Lord has definitely powered the sustaining grace of this renewed  pursuit of CSM and any mental ability to write about it.

Oh, and some other progress:  just finished the final edits of my upcoming eBook Hope Beyond Lyme:  The First Year.  I’ll do a final read-through and copyright check then publish it online.  Stay tuned for some more good news!

Yeah Lord for anything good that happens from here!  Your strength is shining through once again.  This vessel is broken, cold, and quite spacey.  Help me finish the race you have set before me and publish this work you have created in me.  In Jesus’ name, amen.

*************

UPDATE:  The CSM is on it’s way across country from Massachusetts to Indiana!

Yes, no, and wait

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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.