The Chips Under the Bed

They should be alright after about a week in the heat, right?  Ugh.

Usually when “the bus driver” and I come home from a camping trip, we empty the travel trailer of all food that very night.  Of course it may be 3 in the morning but it all comes out nonetheless.  Not this time.  This time was very different.  The unopened bags of chips are still in the storage compartment underneath the bed and we have been home for SIX DAYS!  Gratefully the ants on the driveway have not found them yet!

I really don’t know where to begin to tell the story of our attempt to bring a family member here from out of State to visit, to maybe live with us.  This was a huge undertaking for all three of us:  a journey that began over 6 months ago that was actually cancelled the first time around.  Perhaps it will be best to unpack the situation in a few blog posts over time as I begin to recover from what was largely a failure.  But there is good news:  my Aunt is healthier, stronger, more mentally sharp, conversant, happier, and overall functioning significantly better than when my hubby, Steve, and I picked her up in Florida 8 days ago.  As for me, not so much.

Last night was one of the most horrific scenes of recent memory.  After a total of 12 hours finally getting some errands done with a late night Doctor appointment too, I had the most frightening convulsive episode imaginable.  My threshold of reactivity had been plummeting with each passing day that my Aunt was travelling or living with us.  We had taken extreme mold avoidance procedures and she was wearing all new clothing that I had specially prepared for her.  Her belongings from Florida were cleaned and secured in plastic storage bins in our garage; only doubly-freezer-bagged supplements and medication were in the house in a remote closet.  She lived in an inadequately  maintained and moldy living environment laden with the fragrances that most women like.  We took extreme measures with her stuff but never considered the detoxing of her body to be the toxin most noxious to me; her skin scent reflected several different problems beyond hygiene and no amount of bathing or washing of linens/clothing was helping me fast enough.  I crashed fast.  She, on the other hand, (in our very clean and climate-controlled home with exceedingly healthy meals, rest, and loved ones nearby) quickly regained skills and energies she had lost in the past year.

I was unpacking groceries from our local Meier when an odd feeling hit me.  The warning signs that I learned to recognize in the past when at my sickest with this complex/biotoxin illness had changed.  The odd symptoms ramped up so quickly into involuntary full-body shaking episodes that I barely had a time to get to a safe position to prevent injury.  These kinds of episodes are very dangerous!  So I was standing in front of a counter filled with plastic bags of groceries when my eyes drew in to close and all I could do was kind of lean-and-cling to the edge of the refrigerator as the convulsions began.  They went on and on for at least 20 minutes until my husband would discover me and carry me to the bedroom.  The repetitive oscillations injured my spine from one end to the other.  I could not move my body and was terrified of falling.  Trying to relieve the cramp in my right calf triggered a rebound, a worsening of the episode.  I just held on . . .

Things were no better once lying down.  The involuntary shaking traumatized my neck and my body temperature began to drop.  I could not speak when I needed to and breathing was difficult.  Time either stood still or passed along quickly, I have no idea which one.  I couldn’t even cry out my angst until much later.  Then the visual anomalies began of swirling shadowy circles on the ceiling of our bedroom.  Steve left and returned a couple of times as he tried to help figure out just what caused this and more importantly, what to do to make it stop.  He sniffed my clothing and found them to be musty.  That discovery pointed to my hours trying to get special requests for everyone at the grocery store — a water-damaged building that was problematic for me before their remodeling.  I guess it is still a problem!  My Beloved removed my soiled clothing and the amplitude of the shakes lessened.  But by then the weird, demonic-like writhing and vocalizations had already begun.  It is terrifying to endure this hell.  I prayed for the Lord to take me.  I searched for the white lights but did not find any.  Three hours went by before I could function again . . . what was left of me, that is.

Repeated biotoxin exposures had lowered my threshold of reactivity.  I was at the lowest point, last night, after doing significantly better these past 5 months.  Looking back it all makes sense:  cumulative exposures began when helping my Aunt for five hours on each of two days to do laundry and then pack for this trip in her moldy State of Florida.  It rains there every day now and she has had water damage in her condo several times without remediation.  I wore a charcoal mask during our time there but the conditions were still unbearable.  (Even Steve agreed and had some symptoms.)  Have you ever had to wear a mask in 90 degree heat and humidity while doing physical and emotionally exhausting work?  I had a stress rash on my chest, at least 12 irritated mosquito bites, soreness from dental adjustments from my Craniomandibular Specialist in town, and to deal with a cognitively impaired and severely anxious family member who still struggles in facing her brain disease.  The process was exceedingly painful, frustrating, exhausting.

In another post I will outline the procedures that we used to attempt to implement extreme mold avoidance to be able to care for a family member in crisis.  We simply could not leave her in Florida any longer.  For today, I am grateful that I did survive last night because I got to see a miracle in action.  No, it’s not only the organic lime corn chips that are alright tonight.  I am completely exhausted yet stable and have not had any episodes since she left our home around 10:00 p.m. (and I cleaned, tossed bed linens and other things out of course).  This is the first time I have been stable in 4 nights.  The miracle is that when I was able to get out of bed at 5:00 p.m., my Aunt’s friend from Michigan had arrived and was sitting with her on our patio outside.  Well hello Dean!  He was offering to drive her back home to Florida.  While I disagree with many aspects of this arrangement, I was in no position to decline a solution that could help stabilize me:  her now former caregiver in crisis.  She left with him after some dinner, some packing, some very sad goodbyes.  Our visit wasn’t supposed to end this way!

Aunt Lori with Dean at Dinner 7.12.18

Looks like the chips and me are going to be fine in a little while (as the bags are still out there in the Camplite in the driveway).  Steve is grateful for the possibility of a full night of sleep.  We shall recover.  I am grieved that things didn’t work out with my family member and for the torture I had to endure trying to care for her.  I am glad that we could give her the gift of renewed health; that I discovered where I am at with this ongoing illness; and that our Lord is there to carry us, to act, to make His presence known no matter how hot things get in our lives.  Please join me in praying for my Aunt.  Dean won’t be staying with her very long and . . . I had to let her go from our care.

JJ

Clarity Came to the Caregiver

Sometimes the moments of frustration break away to clarity and decision.  Gratefully, the crisis is over for now in our care-giving responsibilities.

Recently I vented about the stress and trials of caring for a family member at a distance.  She is having difficulties making decisions.  She is having difficulty trusting anyone to help her despite reaching out to a few family members to do just that.  Then she changes just about everything after you have helped her establish according to her wishes at the time.  I am concerned for her safety.  Mostly I have been concerned for my own sanity and stress level, caring for a lady for whom nothing is quite good enough.  What a tough place for us both to find ourselves.

So we will back away for now until she finds that she really needs us.  Her summer visit is now cancelled.  Her indecision really is a decision of sorts!  My beloved saint of a hubby and I will see this family member within a month where we will regroup in person.  Until then I will focus on the tasks of recovery from my own serious illness.  More about that next . . .

Fiji, water, patio, covered porch, Indiana, Spring, garden, relaxing, healthy food, carrots, Bible reading, prayer time, shade sail, flagstone

The way it should be

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ

 

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.

Time for a change

From Family Practice Physician to Lyme Literate Medical Doctor, from Chiropractor to Obgyn, our medical doctor tries to do it all.  I have benefitted from his expertise yet I am still not well.  And when I saw the redness and exhaustion in his eyes during my appointment this evening I realized that he is not well either!

Everyone who sees this gifted physician knows his crazy schedule, his dedication to help everyone in his care, and his history of nearly dying a couple of years ago with his own debilitating illness.  We used to hear how his office conversion to the government mandated computer system was responsible for incredible stress and delays in appointment times.  For example, it was not unusual to call the office in the morning about an appointment scheduled for 10:00 a.m. and not be called in for my appointment until 4:00 p.m. or later.  Forget the ones scheduled after 3:30 p.m. as they were usually rescheduled.  For awhile about one-third of my appointments were re-scheduled, delaying receiving test results or reviewing the status of a particular medical condition for months.  Frustrating indeed.

Yet when there was an acute issue, the Doc was right on it.  When something new popped up I was sent to the hospital in another section of the medical park for labs or scans, held in the waiting room for results, and sometimes seen back in the office much later that night.  To be seen well into the evening was not an unusual occurrence.  My record was an appointment that started at 2:30 a.m.!  He had one more patient after me and had just received notice that one of his pregnant patients was going into labor.  He must have never gone home that night or morning!  Dedication had become insanity.  We talked about it during that visit.  He agreed.  I understand that some scheduling and office procedure changes were put in place for this new year.  As near as I can tell, the staff and Doc are ending their nights before midnight now.  Virtually the same story, different day.

I recently blogged about some important abnormal test results being misplaced for six months.  That has happened another time as well.  Tonight there was only enough time to go over about half of a detailed genetic cholesterol study.  He handed it to me and said, “here, you take this.”  Whaaat?  He thought the “high CBD hemp oil” that I reported was reducing the seizure attacks 40% was vitamins C, B, and D.  Er, no!  After correcting the computer’s voice recognition software two dozen times, I believe he understood what I was saying:  sitting there with my ventilation mask on to avoid seizure attacks from some mysterious exposure in the office.

Mysterious was the exposure until I asked one of the nurses about it.  I had asked before and a different nurse declined comment.  And yet tonight in her own fatigue, a long-time employee openly shared how their office has routine leaks in the ceiling throughout the summer.  The staff has complained about the musty smell and requested testing for mold spores.  Evidently the tests came back “negative.”  The nurses still battle sickness at work.  A friend of mine who is a patient there can detect the musty smell but I cannot.  I just get tic attacks sitting in the treatment room for 2 hours waiting for the Doc!  My worst episode lasted 2 1/2 hours NON-STOP began after midnight dominated by convulsions most of the time!  My husband came to pick me up around 4:00 a.m.!  I’m sure that exhaustion and stress were a factor being in the office so late that night but hey, I was sitting in a water damaged building to be seen by my doctor for mold illness!  Whaaaat?  Soon after that I started wearing a mask every visit!

I have learned so much from my brilliant Doctor.  He is a Christian man who really cares about his patients.  He has provided better care for me for six years here in this smaller Indiana town than I ever received in the large metropolitan area of Chicago.  When my health got significantly worse 2 1/2 years ago I hung in there with him, hopeful that we would find answers.  I was also unsuccessful finding another MD or clinic to address the intractable seizures, pain, etc.  Gratefully, the Lord has now led me to another clinic in Michigan with two physicians specializing in methylation issues and biotoxin (mold) illness, respectively.  After three phone consultations, extensive paperwork, and additional lab testing completed, my husband and I are preparing for my first in-person visit on March 24th.  We will stop at a lab near the clinic for additional blood work to better match Dr. Richie Shoemaker’s protocols for “Chronic Inflammatory Response Syndrome.”  My current MD and I have worked closely on Dr. Shoemaker’s protocol yet neither of us are officially trained; this led to using the wrong laboratories, incomplete test results when the samples were not processed correctly, and improper sequencing of the treatment plan.  Two very expensive medications from an out-of-state compounding pharmacy either did not work or made me much worse.  We tried!  The biotoxin illness Doc at the new clinic works closely with Dr. Shoemaker and is a Christian too.  I am encouraged.  Lyme disease is not the focus at the moment and that’s o.k.

So it’s time for a change.  I still have appointments on the books with my primary care physician as someone will need to monitor ongoing health issues not covered by the new clinic.  He has asked for copies of all of the testing and reports so I am happy to oblige.  With the Lord’s help I will continue tweaking the dose of high CBD hemp oil in hopes of reducing even further the seizure attacks and noxious symptoms that follow.  The Lord is guiding me step-by-step, including through the spiritual leadership of my beloved Steve.  I am so glad I heeded hubby’s advice and did not start seeing every expert who sounded good on the internet!  When moments are better for me, we celebrate and don’t think about the bad times.  We both see examples of how the Lord has used this season in our lives for His glory.  We are closer than ever, more in love than ever before and for that I am grateful.  I am closer to Christ than ever before as well knowing that He heard my truly desperate cries for help the night before I first started the CBD oil.  I was ready to die and it was not to be.  I was spared from further anguish and suffering, turning a corner to better things at last.

If you are suffering this day, this night:  do not give up!  There’s a blogger praying for you Gentle Reader.  More importantly the God Who created the universe knows your name, sees you, knows your pain, and gave his life so that one day your heartache would end.  Please draw near to Him and He will draw near to you.  He will never leave you or forsake you.  Everything will be worked together for good someday if you but call upon the Lord and let Him into your heart.  These statements are based upon His Word and promises that are true today and always.  The Great Physician will see you through, always my dear one.  Take care,  JJ