At the hands of professionals

Dodging of bullets has become a bit of a sport for me, achieved through the grace of our Lord, Jesus Christ. He alone gives me the presence of mind to LOOK, LISTEN, AND FEEL (as they used to say in the first step of administering CPR) when distraction or stress accompanies various medical procedures. This week I have already dodged two bullets and it’s barely Thursday morning!

BULLET #1

The first bullet came on Monday with a failed attempt to sedate me for a dental procedure. The adult dose of Halcion, administration of nitrous oxide gas, and even a second dose of Halcion wasn’t working correctly to put me down to tolerate the routine treatment of a cavity without seizures. Yeah, that’s my protocol these days and it was still a mess! I was awake during the numbing injections which triggered the onset of the first of many convulsive episodes that day. My gait was unsteady for hours after everything was over. A five-hour nap found me nauseous and weak, ravenously hungry, and traumatized from yet another medical fiasco within a month. The dentist wasn’t even able to complete everything planned that day and said I needed to return for a more involved procedure for the second tooth. The cavity was more extensive than originally expected and would require a crown. Holy cow. It took me self-administering a dose of a binder containing activated charcoal, more long naps, and IV fluids the next day (thank the Lord for the divine scheduling on that one!) to get me to a more stable place. I’m glad the dentist called personally today “to see what I remembered.” I’m not glad he kept giving me drugs so he could get the dental procedure done. I am sicker today than I needed to be. He knows I am a complex patient but whatever. Further, taking simple over-the-counter pain meds for the gum pain today triggered about 30 minutes of tazoring. Lord have mercy! We have crappy dental insurance that doesn’t cover any type of sedation nor more than half of routine office charges. But I digress. I did survive. The caries of one of the two teeth are filled. I have cried quite a bit as well.

BULLET #2

The second bullet came this afternoon during a routine infusion of IV fluids administered to treat autonomic dysfunction and chronic dehydration. These infusions have served to keep me out of the Emergency Room for most of these past 3 years; praise the Lord! The pandemic required me to shift from going to an outpatient clinic to home health services for regular administration of fluids. While services at home bring exposure to COVID-19 right into our living spaces and require more work on my part for set-up and management of both orders and supplies, overall it’s a better option. I can crash in bed afterwards if needed. No need to rally the energy to drive home 30 minutes when exhausted or bother my beloved to drop me off or come and pick me up during his work day. (I also get to watch HGTV when at the hospital which I sorely miss of late!)

The home health nurse who comes to our home is largely about the business of her infusion services when she’s here. She’ll chat some but overall tends to be rather private during her 2 1/2 hour visit. Today she was quite chatty after her delay due to a flat tire on her car, wonderful experience with a Good Samaritan who helped her along the side of the road, and story of her young niece who was undergoing surgery this afternoon for a displaced hip. E moved quickly as she prepared my infusion from supplies I had lain out for her in the mini hospital of our living room. I always have furniture covered with clean sheets and everything available that she needs including my own blood pressure cuff. This all appears to help her get down to business quickly: prepping my skin, setting up a sterile field, priming the Huber needle used to access my port, connecting the tubing and gravity system for the infusion, and organizing supplies for all of the steps in the process. I have hand sanitizer, gloves, a sharps disposal container, and small receptacle for trash at the ready. She gets the infusion going within a few minutes then sits down to do her documentation, take vitals, and schedule the next visit. It’s a routine we both know well.

Today E was about to puncture my chest with the 1 1/2-inch long Huber needle to access my infusa-port when I noticed what looked to be an air pocket at the top of the syringe attached to the needle. I’m used to seeing her push the fluid to the top of the 10 ml syringe before attaching it to the short length of tubing affixed to the Huber needle. She turned towards me to access my port without this important step. I didn’t realize her misstep until afterwards. I just saw a shadow of the air space and blurted out, “is that an air space at the top of the syringe?” She looked up at the syringe elevated in her right hand as I lain on the sectional beneath her. “Yes. Looks like I didn’t push enough fluid into the line.” She pressed the plunger of the syringe to remedy the situation then turned back towards me, bent over, and counted to 3 as the needle punctured my chest wall, largely numbed with compounded Emla cream. She said that it took some work to get a blood return. She drew a waste tube of blood then another for a lab before starting the IV. The entire process took less than 2 minutes.

I understand that they used to say in the old days that a bubble in an IV line could kill you. Or at least cause a stroke! This is no longer true for small amounts of air after extensive research proved this idiom incorrect and protocols were updated. Perhaps so, however virtually every nurse routinely does her due diligence to purge lines from unnecessary air in the lines. It’s part of their training. The filters in the IV systems help as well. The literature I researched today was variable as to how much air was needed in each type of application and venous vs. arterial vessel before damage could follow. Another consideration is the location of the vessel. Air in veins closer to the heart and brain are more susceptible to causing damage; the lungs can absorb an air bubble but it takes time and sometimes special positioning. It also takes time for symptoms to occur followed by testing to locate the culprit. Holy cow. Checking everything every time just seems like a better way to go. Or maybe the patient checking everything every time is a better way to go? It appears that I was below the threshold for known damage to occur. However I did find the following from the Art and Science of Infusion Nursing:

Good clinical practice includes aspiration of air from stopcocks and needle-free connectors before injection and expelling all air from syringes. Most important, even small volumes of air should be considered as potentially consequential.

This applies to intravenous pumps as wall as gravity infusion systems; I am treated in-home with the latter. The threshold appears to be amounts of air greater than 1 ml. If you add the amount in the syringe plus the tubing and Huber needle, I estimate that I would have been slightly above this threshold today. There is no stopcock on the Huber needle assembly before it is connected to the gravity infusion system. Having said this, most documentation of cardiac, pulmonary, stroke, and other damage in the literature appears to have occurred at much higher levels of air. The quote above follows from consideration that where the air bubble goes can determine the type and scope of damage that may follow. Will it be in the heart, brain, or lungs? The Lord only knows! All are to be avoided!

Thank the Lord that I dodged another bullet today! You gave me the presence of mind even after a traumatic dental appointment yesterday that left me with residual amounts of sedation possibly still running through my body, to see a potential risk to my life and ask a simple question. That action may have prevented an unforeseen disaster! I hesitated to question anything in the seconds before seeing the shadow-in-the-syringe and the needle on its way to my body. My nurse was upset already and who am I to question her expertise in administering a procedure she has completed hundreds of times before? I am the patient, the one who is to cooperate with the care being administered. Besides, it would be an exceedingly awkward 2 hours thereafter if I was wrong. But what if I was right? I asked anyways and am the better for it.

As E finished accessing my port, I stated as softly as I could, “how about if we all just relax a bit and re-group now?” She didn’t say anything for a very long time. Geez oh man. I find that it’s often the patient under grace (instead of shock and horror) that has the opportunity to save the moment from disaster while at the hands of the professional. I may be in trauma from all that has transpired this week but still present to what is going on around me. That’s a God-thing. Healthcare professionals are often just too distracted for their own good: from productivity expectations to long shift work and beyond. And they are humans just like me. Lord knows how often I have been the one who was distraught, making a situation more awkward if not dangerous in the Emergency Room, ambulance, or infusion suite. After all, we are all under the direction of the Great Physician who is writing the orders for each of us. Looks like I fulfilled my orders correctly today.

Shall I sign off on my chart/blog tonight with my credentials as a licensed healthcare professional? No, I am not a nurse. Tis better to be humble. Thank you Lord. Your grace sustains me. Whatcha got for tomorrow? (Or dare I ask?) JJ

So much to consider

Phil 1:12, Philippians, trials, suffering, endurance, Christian, crisis, long term, illness, chronic, humor, gallows12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.”  Phil 1:12

Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme:  we shall rejoice with Christ as our guide!  Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right?  I mean he created aardvarks, zebras, and tse tse flies!  What’s up with that?  Oh I know that the Original Adam named them all but just how did he do that?  They were all such weird creatures!  So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.

Take for another example the thieves that attempted to steal gasoline from an RV.  This is a true story:  instead of tapping off the gas line they ended up tapping off the septic line instead!  When the fluid started flowing it was not fuel it was the polar opposite:  stool!  So sad.  Such a righteous punishment I must admit!  And as a grateful owner of a travel trailer all I can say is:  Tee hee with a smirk.  ;}

I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however.  I’ll just keep it simple:  there’s some good and there’s some that is not.

On a good note I am grateful to report a widening of social contacts of late.  I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church.  I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship.  All of this is good.  It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different.  We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.

On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly.  Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone.  It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain.  Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day!  I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall.  So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time.  This treatment coupled with the wintry temperatures below freezing have brought incredible pain.  However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good.  Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!).  Just maybe these past 4 years have not been wasted after all!  It appears that each new treatment has prepared me for such a time as this:  we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .

There is so much to consider.  Will I continue on antibiotics long term?  Will my health insurances help us out or cut us off next week?  Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes?  When would I transition back to more herbal-with-pharm-grade supplemental interventions?  Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox?  How much more stress can my beloved husband, Steve, be expected to bear?  And how will we pay for all of this?

As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease.  I just wear long underwear everyday to keep warm!  We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully.  I know that to be true.  I have met many of them when we had a local Lyme disease support group.  I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources.  (See this link for more info on chronic Lyme.)  Perhaps my case was one of the more severe.  Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life.  There is so much to consider that simply was not on my radar over 4 years ago.

If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you.  There is hope!  You are not alone, Gentle Reader.  Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis.  Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness.  He sees you and will see you through what you are facing as He has done so for me and Steve.  He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).

May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory.  And, um, when we get our prized prey I’ll just say, “please pass the catsup.”  Squirrel on the Bar-B-Que anyone?  Ewwwwww!  :JJ

It is here!

HOPE eBook CoverIt is here!  I am grateful to announce that my new eBook is now available!   Simply use the coupon code UR45T for your free copy beginning November 1st at:  https://www.smashwords.com/books/view/371334

The first year enduring and battling a serious illness can test everything we thought we knew about coping with the trials of life.  In this ebook, I invite you to share the more meaningful moments of my journey as I seek to draw strength from outside of myself to endure the trials of my particular story.  My hope is that you, too, will find strength and hope that transcends your day-to-day experience.  I also hope that you will consider the hope found in God though a personal relationship with His Son.  His presence in One’s life makes a difference in where a person lands when this particular journey of life is over.  Will we have peace or will we have despair?

With a sincere heart, it is my privilege to share my journey with you.  Let not these trials of ours be wasted, eh?  Gentle Reader, are you ready for enduring hope beyond what we can see?  If your answer is, “Yes!”  then I invite you to read, Hope Beyond Lyme:  The First Year.  With extra bonus pages and the most meaningful and encouraging vignettes updated from this blog, may it uplift you, knowing that you are not alone, not today, not ever.  :J

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While I would never compare my experiences these past 2 years to the incredible suffering of the apostle Paul of the Bible, I draw encouragement from his words as noted below.  My prayer on my most wretched of days was that there would be some greater purpose for this illness, that something meaningful would come from it.  I hoped that my writing would not be a rant that went no where.  I did not want to end each posting with more anger, hurt, sadness, or negativity than when I began either.  My hope is that I would leave you with more good than not-so-good.  To encourage others, well, that would be awesome as well as pose a tremendous responsibility to get it right as a matter of stewardship.  The Lord gave me a voice and my hope was that I would use it to glorify Him most of all.

If you like what you see here, would you kindly share it with others?  The free coupon special won’t last long!  And thank you for being with me along this journey thus far.  Shall we continue the adventure another year together?  Oh I hope so!  Take care Gentle Reader,  Just Julie

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12 Now I want you to know, brothers and sisters, that what has happened to me has actually served to advance the gospel.  (Philippians)