Another Healthcare Faux Pas

When I learned that there might be some pain relief for me if I went to a clinic that specifically focused on headaches, I was encouraged. I have some form of headache or migraine virtually every day. Pain lowers seizure threshold. Neurologists in this specialty have more strategies than typical anti-inflammatory and narcotic pain medications, over-the counter preparations, and the therapies we chronic folks go in and out of all the time, i.e. chiropractic care and physical therapy. I can rarely tolerate pain medication anymore and have used it sparingly my 30 years of chronic pain. Looked to me like there was something more to learn, some hope for a better quality of life, so I asked my Doctor for a referral to a headache clinic. What would I have to lose?

My dignity. Last Monday my dignity took a major hit at another major medical center. Here’s the raw footage from a message that I sent to a friend when I was still in shock.

Had a very odd, traumatic, and disappointing day at the headache clinic at the CC today. Gotta get this out. The MD Fellow with a couple months of experience listened to me, made a new HA diagnosis along with med ideas to try to manage them. This could raise the threshold for the convulsions, providing relief for both the episodes and HA pain. I have a HA every day and both HA and convulsions have been worse. Tweaked my diet recently and at least the HA came down enough to make the trip: 4 hours each way. The building was old and musty. It rained during half of each travel period. I had 2 hours of sleep Sunday night. I was ripe for an episode at some point; short tic attacks in the truck on the way out. Still was hopeful. The telehealth appts with the first 2 CC specialists 2 weeks paved the way for this appointment.

Then the young MD left to review my case with the staff MD; they both returned. We went in person so I could have a more comprehensive neuro exam. All the 2nd neurologist had me do was demo 5 simple range of motion exercises. A disastrous seizure attack ramped up within a minute! Thankfully I could blurt out to get Steve as she tried to coach me on breathing ex in a childlike way. I blurted out that I can’t breathe! She continued. I asked to lie down. The high velocity, repetitive, involuntary movements were injuring my neck n back. It’s terrifying and dangerous. SHE SAID NO! I could not believe my ears. Steve picked me up, my legs hanging, arms curled up, and put me on the exam table. I was able to get into my recovery position that protects my neck. Screams emerged that I cannot control. The pain seared my spine, head, extremities. Then they left. 4 times in this visit I asked to have the door closed (for privacy). 3x they said no so they could hear me if “anything happened.” Like what, I thought to myself. It was already happening. Steve stood nearby for my safety. I heard people walking by in the hallway. This is a HIPPA violation. (Correction: This actually violates their Patient Bill of Rights, posted on the CC website.)

Steve and I found ways to develop a plan. There were 3 violent episodes in total over an hour. The Med Asst came in once (as id’d by her voice, my eyes were pulled closed) and nurses after the 3rd round. I asked for the Doc. My tongue was thick and protruding out of my mouth, pulled to the right. My right arm dangled lifeless towards the floor; left arm curled and tucked in a flexion posture to my chest. This is mixed hemiparesis. But the young Doc had already left the building. The nurse said if it didn’t stop I was to go to the ER. How would I get there like that, I wondered, struggling to communicate and trying not to chew my tongue or trigger a rebound reaction. Finally I could ask Steve to turn out the lights. He put Prednisone in my mouth despite the snot and tears staining and stinging my face. I was able to ask for ice. Putting ice on the back of my neck broke the pain cycle worsening the episode. Like and overfilled balloon losing air, my body started to calm down. It took about 10 minutes.

The nice nurse had gotten a wheelchair. She figured I would be too tired to walk. I blurted out a thank you. I think she had left when I could tell Steve that I was WALKING OUT OF THERE under my own power. Any shred of dignity required it. I grieved so much on and off through this horror and trauma before I could finally sit up and stay up. Time to use the bathroom, wash my face, and get out of there. Soon I was gingerly walking out of there with all parts moving, albeit weakly. There was no one in the hallway. There was no one at their desk. We walked out into the dusk and rain.

Somehow during the first episode I was able to ask the young Doc to write down her recommendations for me. I’m glad I did. She hand wrote on my summary note only wrote 1 of 5 ideas she had for me. I was able to reconstruct the rest of it on our way home. The older Doc must have been the one to write a different, generic diagnosis. Only 1 recommendation was given and it was for a treatment program at CC that I already did at the Mayo Clinic. It made no lasting impact. Steve and I concurred that the older neurologist was of no benefit. He has seen this discounting behavior before. He said it’s why he jumped in to help me while the Doc did some chanting thing.

I’ll message the young Doc tomorrow via the MyChart online portal for her rec again. Hope she can do so for me. I went there for help with HA pain. I have no meds I can tolerate for pain when things get bad. The modalities help some. But with my chiro out with COVID, reg Doc/chiro rescheduling 60% of my appts due to his busy practice, difficulty getting to PT, and increased episodes, I need more tools to lower the pain threshold. The headache-specific tools could be a game-changer. Then I can go back to natural stuff. And be out of bed, able to function more again. Funny how I’m at the book of Job again as I continue to read through the Bible.

I spent the next 2 days largely bed-bound, struggling to function at all. The young Doc returned my message with the same diagnosis and recommendations as the older Doc but did add the name of the 2 classes of medications she had recommended. At least there was something new to pursue with my Family Doctor. I started an herbal remedy for headaches anyways and at day 5, the daily headache had already started to improve. But I still wanted to see their report. Turns out I was in for another shock when it became available 6 days later.

The Progress Note that got posted in my patient portal and I anticipate will be sent to my Family Doctor is a FABLE! The report lists so much false or inaccurate information that I wonder who they are talking about? Numerous tests were never completed but there are results listed for them! Below is my responses from the “Request for Amendment of protested Health Information” filed today in my patient portal on the CC website.

The Progress Note contains falsified information.  The following tests WERE NOT completed:

REVIEW OF SYSTEMS:  None of these questions were asked.  7 mm kidney stone, intractable back pain, arthritis, significant sleep disturbance with Mild Sleep Apnea denied or omitted.

PHYSICAL EXAM for rash (present on both legs), cardiovascular & lungs (no stethoscope exam), vascular (no checks).

CRANIAL NERVES:  No exam completed.  No sensory testing, venous checks.  My tongue protruded to right during the convulsive episode (in your office).

MOTOR EXAM:  No MMT completed of UE or LE.  Right UE hung from table during convulsive episode.

SENSATION:  No one touched me except for vitals.

CEREBELLAR:  Convulsed for total of 60 minutes.  No finger to nose, heel to shin, rapid alt movements completed.

REFLEXES:  All values are false.  No testing completed.  Neither Doctor saw me walk in the room nor had me do toe or tandem walk.

What does the current information say that you believe is inaccurate?

The only PHYSICAL EXAM that was completed was an upper extremity range of motion which was WNL, interview, and vitals.

Multiple false values need to be deleted.  We drove 4 hours each way to have a comprehensive neurological exam completed and all that was done was an interview, observation, and BUE AROM test.  No one touched me to do a physical exam of my heart, lungs, reflexes, cranial nerves, strength or other tests.  Neither Doctor completed the gait tests noted nor saw me ambulate in the room.  Neither Doctor reviewed my Headache Scores with me.  When the BUE AROM test triggered aura then speech changes, searing head/neck pain, tics then a convulsive episode, I struggled to ask to lie down.  Dr. K (the older Doctor who I finally got to see her name when it was stated on the PR) said “NO.” Whiplash re-injury followed from severe involuntary movements.  My husband picked me up and put me on the exam table in a position so I could brace my head from further injury.  Dr. K chanted to breathe deeply.  Sometime later my husband put 60 mg of Prednisone in my mouth.  I do not know when the Doctors left.  Later a nurse checked on me and brought ice for the back of my head/neck and the episode stopped completely within a minute thereafter.

We could have done this verbal exam by tele-health without the trauma of this visit, extensive travel, and false report.  My “After Visit Summary” includes the diagnosis of Chronic Nonintractable Headache, Unspecified Headache Type.  This diagnosis is not on the Progress Report that I anticipate is going to my family practice physician, Dr. J, for continuation of care.  Please add it as an addendum.

Sigh. Big sigh. I have no idea from where they got the physical exam results that are listed in the Progress Report. They are fabricated, false, wrong. The Request for Amendment of Protected Health Information can take 60 days to receive a reply. I looked up the Clinic’s HIPPA policy and Patient Bill of Rights and Responsibilities. Looks like my privacy concerns fit more the latter and that I would have to contact an outside agency to file a complaint. It’s too soon to consider such action. I’ll see what the Request yields. Not sure if I should contact the young Doctor or not. She was actually very professional and listened to me. At the Mayo Clinic, the “MD Fellow” residents are able to file their own report in addition to the supervising physician. At CC, only a report with Dr. K’s signature on it is filed beyond the Visit Summary you get walking out the door (that only contains a preliminary diagnosis, single statement of recommendation, and information I had provided to the patient portal). The gross inaccuracies on the Progress Report from CC renders it useless in my humble opinion.

We’ll see what my Family Doctor says. He is a brilliant diagnostician and loves to review special reports. He’s just too busy most of the time to dig into the differential diagnoses of my case sometimes. Looks like the Docs at CC were also so they made it up. Another healthcare faux pas for sure. Oy vey. JJ

Who gets this?

Don’t be this gal!

There have been many times when skills above being a “patient” have helped me navigate the mess that is our American healthcare system. While I am better understanding what it means to be pre-diabetic for example, I am convinced that it takes at least some college education to get the basics done! The following skills are critical.

Organization

Get lots of manila folders in January every new year and label them by categories that make sense to you. For me that means Medications/Supplements, Clinical Summaries, Insurances, Test Results, and one for any new, major diagnosis. Then I have a master notebook with the latest test results that I developed in preparation for a comprehensive evaluation at the Mayo Clinic. While most major healthcare organizations have online patient portals with all of our test results, sometimes your provider (Doctor or other skilled professional) will not be able to access them. Streamline each medical consult by having copies of pertinent reports with you at each appointment. This is particularly true when crossing over from one healthcare organization to another to see a particular specialist. GET YOUR OWN COPY of scans on DVD and go to medical records for the paper reports after each major test, test procedure, or medical procedure. Consider scanning them into Word files for when you are communicating with providers online. Searching for test results on your smart phone via the respective organization’s patient portal could be helpful but you will waste precious time with said provider. Your appointment may be over by the time you log in and access the data!

I first learned about organization when organizing ceramic molds for an occupational therapy department in a mental health hospital as a high school graduate. The patient groups ran more effectively thereafter and my supervisors were thrilled. As time went on it became clear that my love for office supply stores, blank CDs/DVDs, then little thumb drives were good things.

Put Stuff Away

For us, each year of non-medical records gets put into the same box as the same year of tax records. We keep only the past two years of tax record boxes in our home office and the rest go into the attic. After seven years the boxes can get shredded, burned, or otherwise destroyed (if we ever get around to it!). Pertinent folders relating to test results and medical conditions get filed in 4-drawer file cabinets that are alphabetized. Yes, this includes if our files spill-over into more than one file cabinet (as we have 5 of them!). A to C now takes up just one of these cabinets and may change when folders that are no longer needed will get purged. Yes, we don’t buy more file cabinets anymore; I just purge outdated information at least annually and especially when there is no more room for new records. Think it is outdated to worry about paper records? I disagree. There will always be important mail, receipts, reports, legal documents, and other pieces of paper to manage.

Any documents stored on our desktop (or laptop if we had one) should get dumped into an extra, external hard drive (our preference). These can be programmed to backup automatically weekly or to a cloud service in real time.

The importance of filing paperwork for quick access became a critical asset just 2 months ago that could serve to extend my life. I was filing some CT scan reports one weekend when I noticed that NO ONE had followed up on the finding of a new pancreatic cyst. This type of finding requires swift and specialized follow-up which began two days later. I am now in a 6-month surveillance program to make sure the particular type of cyst does not advance into cancer (that is highly fatal). Keeping-and-following good records is as important as the healthcare you seek and doing so could save your life!

Take Notes

We all probably have our favorite place to record information, whether it is on a smart phone app, calendar, daily planner, etc. The key is to be consistent: use the same method all of the time. My Mom was the queen of taking notes on partial slips of paper scattered on the back half of the kitchen counter! Her address “book” was a drawer beyond the sink filled with torn corners of paper, some tucked into the address book with a rubber band around it and some just stacked above or below it. She took out the piles each December to write her Christmas cards and vowed to update the address book before the holiday returned the next year. She never got it done. It was through these handwritten notes we combed when she passed away to make sure that important people in her life were contacted. And it was only then that I came to appreciate seeing her penmanship on pages yellowed, torn, stained, and re-used, that her system really did work for her over her entire life.

Date everything. Write down who you talked to and the phone number you called. Record the prices quoted, deadlines, and most importantly: what to do next. This way the next time you see your note-taking system on a particular topic, you can pick up and continue where the activity last ended. My Mom was an office manager and would probably find me to be a bit compulsive to include all of these data points in my note-taking and filing systems. But I submit to your that our healthcare and the complexity of life require it these days.

I learned the importance of good note-taking when trying to get some specialized cranio-mandibular care covered by any one of 3 insurance companies. I spent dozens and dozens of hours with what became a 2-inch thick folder of notes, letters, and statements accumulated over a year and a half to account for over $5,000 in out-of-pocket charges. I just knew that if some of the charges were coded correctly and sent to the correct payer, we could get such specialized care covered. I was wrong. We have received around $300 in reimbursement! I didn’t know that nearly all of my efforts would be wasted when the original provider offered to help but would not bill insurance directly . . . then did bill two of them . . . using either incorrect or out-of-date codes . . . over and over again. It was a nightmare for all of us involved.

As I write this, there’s a pile of 5 1/2 pages of billing statements, flyers, and notes stapled together and sitting next to me covered with handwritten notes regarding some new medical equipment. So the saga continues yet already I have had $20.28 in charges reversed. Along the way I asked to talk to a supervisor. Yes, I’ve learned who gets what done, aided by my 30+ years working in healthcare myself followed by 8 years of battling a serious illness and its subsequent paperwork. Organize, put stuff away (but not without looking at them first and periodically thereafter) and take notes. Then blog about it or comment below. I’d love to hear from you Gentle Reader. :JJ

A bitter sugar solution

This is going to be a bit of a brain dump: loosey-goosey around the edges, without footnotes, and incomplete in research to back it up. For now, that is. The bottom line is that I am more hopeful than scared that later this morning, I will undergo an endoscopy ultrasound (with fine needle biopsy) in a local cancer center with a top specialist in the Midwest. Because for me, blood sugar issues may have been festering if not causing my worst symptom in this 8 years battling serious illness: daily convulsive episodes. The episodes are worse when my blood sugar has peaked too high or too low. I am more vulnerable to a plethora of triggers when I am hungry; it is possible that I may not have even been aware when it was low blood sugar and maybe not hunger that was the underlying issue. And just 2 days ago, I figured out a way to manage it despite the cyst in my pancreas wreaking havoc on the normal order of things. No, not insulin. No, not glucose tablets or the like. So what can you do to quickly lower blood sugar without drugs?

Drink unsweetened bitters after eating!

Here are the three biggest discoveries that have helped make this strategy successful for me this past week, even when very sick.

  1. The tongue and gut both have taste receptors. These receptors recognize sweet, salty, bitter, and sour tastes when the food touches one’s tongue during eating. It is the work of Dr. Jason Fung, alerted to me by my chiropractor, Dr. Lee Nagel, that showed how the body reacts to the taste of sugar as soon as the sensation is detected. The body then stimulates an insulin response right way, beginning a cascade of events that goes well in folks with normal metabolisms -or- triggering various disease responses in folks with hyperglycemia/diabetes or even hypoglycemia. This finding about taste receptivity changes everything we knew about managing blood sugar through diet: from being about TASTE in addition to CONSUMPTION. Dr. Fung advocates an extremely low carb diet, advancing to the ketogenic diet if possible. (I have tried both with marginal success for my worst symptom, yet continue with the former anyways.)
  2. Bitter food receptors can initiate its own cascade of events. The literature shows how bitter foods and supplements can be used to help manage respiratory diseases. Incredible. Those of us familiar with various detoxification protocols know the value of bitters in the forms of liposomals and tinctures to stimulate bile flow. They are also used to support the kidney. But what does this have to do with blood sugar? Enter here the finding that the bitter taste may in fact be THE DIRECT OPPOSITE of the sweet taste! How is that possible if the tongue divides taste receptors into 4 equal quadrants? Maybe check your Bible to see how the Lord used bitters and sweet tastes as opposites like dark-and-light in Isaiah 5:20. Twenty-five hundred historical facts have never been refuted in the Bible since it was written over 2,000 years ago. Seems plausible to me that this metaphor, given to make a point about good-and-evil, might know something about the way our bodies were crafted as well, enough to use bitters and sweet tastes in an analogy that has a timeless uses for us, for me today.
  3. Stimulating the liver with a bitter herb may very well play a role in balancing the effects of the pancreas secreting insulin. We know that the liver stores and releases glucose. This gets triggered with the release of glucagon from the pancreas (opposite of its release of insulin) and a complex sequence of events that I need to research further. In the middle of a waking seizure attack a couple of nights ago, I had a choice to make. A) Take a bit of honey to raise my blood sugar that I assume was low and hold on while nausea followed, knowing that a) I could not tolerate anti-nausea medication and b) would have to convince my exhausted husband to bring me a complex carb/protein snack to prevent a crash thereafter. It was after 1:00 a.m. In a moment of inspiration, I thought about the liver and kidney detox products that I have used and the relationship of the liver to the pancreas in diabetes. I was just diagnosed as prediabetic! What if I B) used bitter tastes to stimulate the liver? Would stimulating the liver to produce bile flow also somehow release glucose without triggering a merry-go-round that happens when taking oral glucose? What if it’s the swinging of blood sugar levels and not the high or low endpoints are what triggers this hell?
  4. Drink a hot cup of plain, roasted dandelion tea, even if you need assistance and a straw. Result: within 90 seconds, a 30-MINUTE CONVULSIVE EPISODE, after a series of prior episodes, STOPPED AND NEVER RE-STARTED. Holy cow. Praise the Lord!!!!!!!!

Alright now. Was this bitter tea thingy just another rescue remedy to add to the list? Prednisone tops the list from multiple ER visits as often stopping the worst episodes. But doesn’t Prednisone raise blood sugar? Maybe it’s no wonder then that taking it didn’t always work for me. Maybe it was helping with some kind of inflammation somewhere . . . I usually took Prednisone with a couple of crackers which is a simple carb. Sometimes the episode stopped and then restarted again. When it did stop, I was usually ravenously hungry. While I still can’t track everything with direct cause-and-effect, it has been becoming clearer the last few days that fluctuations in blood sugar plays a significant role in this mysterious illness that has stumped dozens of medical, chiropractic, genetic, orthopedic, alternative, dental, functional medicine doctors and professionals and me too. Suddenly I had something new with which to experiment.

Dandelion Root Tea as an option for bitter tastes

The Experiment

I tested out the use of bitter tastes to bring down blood sugar after a meal, even in the presence of a wild card: a pancreatic cyst. I found that if the bitter taste was taken WITH a meal, it made no difference. I found that if the bitter taste was mixed with a sweet taste, even an artificially sweet taste like glycerin, it made no difference. (I read that persons who are diabetic and in a hypoglycemic crisis are instructed to take glucose every 15 minutes, checking their blood sugars, until their meter reading come back into a safe range as determined by their doctor.) I found that taking a certain amount of an unsweetened bitter taste, 15 minutes after a meal CORRECTED THE BLOOD SUGAR SPIKE. My blood sugar came back into a normal range and the shift began as soon as I could taste the flavor on my tongue. The pre-tic symptoms of a convulsive episode would not completely stop with just a taste; I needed to consume the amount of the bitter product that worked for me, within a minute, and re-test my blood sugar 15-20 minute later. The results were sustained until I became hungry again 3-4 hours later. Barely a tic zip squeezed through for the next 2 days.

So an unsweetened bitter solution brought down elevated glucose quickly for me, even in the presence of a pancreatic cyst, without insulin. Holy cow! But what about the role of the pancreatic cyst? Later today, Lord willing, we will find out more about what it is and if it is playing a role in my health. Is it an insulinoma even though I do not meet all of the lab criteria? Is it a neuroendocrine tumor that is pre-cancerous or cancerous despite the fact that it hasn’t changed in size over the past 10 months? Is it a pancreatic pseudocyst that can have either no impact or a myriad of impacts on the function of the pancreas depending upon its location? And most importantly for me, will the fabulous gastroenterology specialist, renowned for introducing new procedures here in the Midwest and specifically at our new, local cancer center, be able TO REMOVE IT TODAY? Of course, I want it outta here!

In the meantime, a lunch bag with a low-carb meal and cup of roasted dandelion root tea will be waiting for me when I wake up from my procedure aka chemically-induced nap. Thereafter we shall praise the Lord for a simple tool that helped me and my beloved hubby, Steve, cope with the last grueling days of waiting for this moment to come. Thank you Lord for your sustaining grace these past 8 years. I pray that your hand works through the skilled doctor today to heal me. Thy will be done for Your glory my precious Lord. JJ

On the Cusp of Many Changes

Here’s a post from last week when I almost didn’t know where to put my focus at any given moment.  Maybe it’s time for a brain dump, prayer, and some quiet before the mayhem?

Inside

The bout of pneumonia is largely past now with occasional coughing spells and nasal rinses to get me through the occasional flare-ups.  Unfortunately this illness has exacerbated the seizure attacks when trying to go to sleep.  It is definitely time for an adjustment to my specialized dental appliances however the trip to go see my Craniomandibular Specialist got cancelled due to the pneumonia.  Oh well, the fact that it has been raining in Florida virtually every day for the last few weeks including a tropical storm this week makes me glad we were not camping in all that mess.  Ever camp and travel in hot, muggy, wet conditions with a large dog?  Yeah, it would have been a moldy, muddy mess for sure!

Outside

We are in the process of selling our Livin Lite Camplite 16 DB that has served us well for the past 4 years.  We very likely will need to accommodate one or more family members during some upcoming travel so we are pursuing the financing of a more suitable travel trailer.  This is a week of finalizing the sale of our “Tin Can Ranch” and the purchase of the new unit, Lord willing, requiring many tasks and 2 long days of travel:  one day this past weekend to scope out the new travel trailer and another day soon to go pick it up.  Travelling a total of 4 days to my medical appointments in Florida was out of the question yet 2 shorter trips over the period of a week was more doable yet very tiring.  No problemmo.  My beloved River Bear is a skilled “bus driver” too!   The cancellation of medical and other appointments this past week (because we were supposed to be out of town!) has allowed for plenty of time for rest-n-naps!  Hopefully the new owner of the 16 DB will be able to solve her delays soon as well.

Things got crazy when late Sunday night in the middle of the Memorial Day weekend we found the perfect travel trailer and price point for our situation!  Within 24 hours of the posting of the listing and us finding it, we were on the road and ultimately making an offer.  Do you think that the Lord cares about the special thingies of our lives?  I submit to you that He does.  The morning of Memorial Day that we were scrambling to take a day-long road trip to see the travel trailer, Steve sold a performance surf ski for his River Bear Racing!  We delivered it to a gentleman along the shores of Lake Erie then headed south to check out the new Camplite.  A week later it was in our driveway!  However, the timing of this transition has found us with TWO travel trailers, much paperwork, a couple of trips to the Bureau of Motor Vehicles, yada, yada, yada.   We are a little nervous but trusting the Lord that things will also be resolved in time for our first camping trip in June . . .

Family

Looks like my family member in Florida will be visiting us for most of the month of July.  It’s still a month away yet many travel arrangements and accommodations are needed to both get her here and have her in our home.  Steve and I still must practice extreme avoidance procedures (changing clothes and showering when coming home from being away) which is tough on an older family member who needs care.  We will make as many preparations as we can before she leaves her home (in a moldy State), have initial provisions for her when she arrives, and hope for the best that her clothing can be sanitized and de-fragranced so she can travel and visit with us in July.  She has many fears, concerns, demands, yet is asking to come.  That is kind of weird since she has traveled with virtually no care just a few months ago and did alright.  So I will be very busy taking care of many details.  Thank the Lord I am less reactive to fragrance and trace amounts of mold, etc., and my activity level has increased some overall these past 2 months!

Home

Getting out in the garden continues to be a great therapy for me in many ways.  The vegetables are now in the ground including a new asparagus bed . . . until the bunnies find it of course!  No worries as I am working on my rascally rabbit defense system as we speak.  Overall I am still months ahead of schedule for Spring clean-up as compared to the past 6 years battling a serious illness.  I am humbled and grateful.  When my days in the past focused on basic household chores and a plethora of medical appointments and treatments.  Was really nice yesterday to sell a piece of medical equipment that I no longer need and then drive directly to a local nursery with the cash to purchase a lavender plant!  The rains today shall nurture the earth and my garden refuge wonderfully.  Thank you Lord for the lovely view out our windows to encourage me on my recovery journey.  You are soooooo good!

I am in awe of the overall goodness of these changes happening in our lives.  Steve an I are grateful and humbled, tired and excited, stressed and energized all at the same time.  So I’ll end with my happy place that provides refuge through it all.  (Can you find the pup in the photo?)

Thank you Lord for your blessings and goodness, love and care.  Gentle Reader:  He is so good!  JJ

Front Door 6.18

 

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