Treatment Update

Time for a treatment update and some good news!  Yes, things aren’t as bad.  🙂

My major focus with my health since I started this blog has always been to stop the residual, daily convulsive episodes that have plagued me for over 5 years.  More recently my treatment plan has centered around treating a gut infection that appears to be related.  Some call it Small Intestinal Bacterial Overgrowth (SIBO) and specifically for me it might be due to a clostridia species infection.  Regardless, the gut-brain connection is real and affects neurotransmitters in the brain.  A myriad of neurological issues can result when these chemicals are deficient or out of balance.  Specific medications and nutritional supports directed by a functional medicine doctor in the past nor my genetic coach/naturopathic physician more recently seemed promising but did not help.  Over the past 5 1/2 years, my medical doctor and I have also addressed or ruled out a plethora of other avenues (biotoxin illness, Lyme disease, mercury and lead toxicity, nutritional deficiencies, dental factors, epigenetic expression, pain/structural complications, the endocannibinoid system with CBD oil, psychological issues, ruling out brain or cardiac anomalies, sleep issues, etc.).  But what about the dull ache in my tummy?

SIBO, small, intestinal, bacterial, overgrowth, abdominal, pain, tummy, stomach, appendicitis, clostridia, infection, test, OAT

I did an experiment with a hand held far infrared (FIR) device designed to treat pain.  I used to sell the KenkoWave when I was an Independent Wellness Consultant for a Japanese health technologies company called NIKKEN.  Pain in the right lower quadrant of my abdomen has persisted for over a year.  A comprehensive medical workup yielded no clues so I decided to shine the FIR light onto my tummy.  After just 2 minutes, I had a 2-hour, violent, non-stop convulsive episode that would not respond to any remedy we tried!  I hung on for dear life!  I experimented some more the next couple of days with the same result:  an hour of non-stop episodes after only 60 seconds!  Holy cow!  Maybe the cause is in there somewhere?  By this time I had gotten the results for the THIRD SIBO test coupled with an Organic Acids Test (from Genova Diagnostics and Great Plains Laboratories, respectively) with severe and high markers respectively.  Over the next month, a plan of attack came together.

Somehow treating SIBO last year with an antibiotic (that stays in the gut called Xifaxan) was not enough to solve the problem.  The current round began with about a week of a powerful bio-botanical followed by a nasty antibiotic called Flagyl or Metronidazole.  The drug makes me nauseous so I take another pill for that.  I am not fond of drugs but at this point I will do it if it KILLS THE BEAST!!!  Gratefully, the abdominal pain has already come down.  This leads me to the good news:

  • One-point reduction in the 1-10 pain scale.
  • Less reactivity to noxious stimuli and pain that used to trigger seizure attacks.
  • Shorter episodes that are generally less violent.
  • One less episode most days at my most vulnerable times:  falling asleep or waking up.
  • Clearer thinking for some part of more days.
  • Less stress, fear, sadness, and anxiety.
  • Fewer headaches.
  • Less food sensitivities slightly expanding my food choices.
  • Increased ability to tolerate more supplements prescribed by my doctors per my test results.
  • Ability to work in the garden about once per week.
  • Ability to get to bed before midnight up to 3 nights per week.  (I often stay up late to avoid seizure attacks falling asleep.  Sometimes this has helped in the past.)
  • Movement in a better direction on several laboratory test and scan results.

The changes also appear to have been impacted positively by taking Low Dose Naltrexone.  Persons with autoimmunity diseases and fibromyalgia often use it to reduce a variety of symptoms.  I did not do well on a different dose in the past but I believe the Lord led me to do some research and prompt me to try it again at a lower dose.  This started the list of improvements noted above with the reduction in chronic muscle and joint pain.  Praise the Lord!  Treating the gut infection followed and here we are.

I am encouraged and hope you are as well, Gentle Reader.  Lord willing, I am going to get well!

If you are someone reading this who is struggling with severe illness, please let me know so I may pray for you.  And please don’t give up!  If I can make it through hours per day of head-banging, you can make it through what you are dealing with too.  You are not alone.  Keep trusting in the Lord to see you through each moment, to guide you and comfort you as only He can do so.  He promises to never leave us or forsake us and will always be near if we but call upon our Lord and Savior, Jesus Christ.  He sees us on our bed of sickness.  He hears us.  And one day He will come again in glory for us, taking us to a place where there will be no more suffering or weeping.  He promised!

Thank you for following my journey dear one.  Take care, JJ

 

 

Our God Reigns!

Seeing this sweet perching of morning doves is such a mixed blessing this morning.  They are able to sit there because yesterday I was able to cut down the massive out branching of a clematis from lower on the trellis.  Also washed the flagstone patio of dirt and some algae.  I should have worn a mask for both projects.  Acute sickness and violent convulsive episodes followed within the hour and at the beginning of a sweet Skype call with my hubby’s son and family.  So sad.
However, the experience was diagnostic in that I am dealing with biotoxin illness now more than anything else.  Also I am tolerating targeted treatments for this for the first time in 4 of these 5 1/2 years of illness.  Lord willing, I am going to get well!
Gentle Reader, let the morning doves portray the hope that I have each new day in my Lord and Savior,  Jesus Christ.  No matter what may come, our God reigns!  Very fitting the week before Easter don’t you think?

JJ 

Life 101

I really don’t think it works for me to have a young person in great health and some priviledge try and sell me on the latest fitness smoothie, butt workout, or prayer meditation. Pretty posts are meaningless to me!

So here goes an alternative from someone with decent skills and experiences from life but who is intensely focused on her health every day. I am “seasoned” by my years over 50 and fueled by the grace that comes with leaning on the Lord to see me through. If I can keep moving forward with crapoloaski (Polish, of course) all around and it makes a difference, so can you dear friends!

I keep going with a simple life-ism to, “do what you can with what you have where you are, with gratitude and reliance on the Christ who loves you, sees you, saved you, and gives you hope beyond that which you can see. Be a good steward of all the brains, stuff, experiences, and relationships I have been given.” Now break it down as follows:

break-it-down

MIND: Feed it or lose it. We must never stop learning. And deeper still: read the Bible, talk to Jesus, and blessings will come one way or another.

FOOD: Eat the food that provides fuel for your body even if you are tired or don’t feel like making it. (Avoid this and feel worse. Why do that?)

BODY: Move in a way for at least a few minutes TODAY that helps support the frame you live in if you want it work for you. Bear weight, even your own body weight, for best results.

WATER: Find water that tastes good to you to increase your hydration. Everything works better when, er, wet.

RELATIONSHIPS: Connect with someone you like every day. Ask for a hug if not freely given. Say “thank you.” Find something to at least smirk or even smile about. And if you can, do something nice for someone even if you have to pray for the strength to get it done. If you are blessed with a spouse, start with him or her, k?

INTEGRITY: Build upon something meaningful from your past even if it was from last week. This is how dreams are born, dreams are realized. God loves that. He very likely placed them there in your heart before you were born and that is cool beans folks.

KEEP MOVING FORWARD, one tiny step, one deep breath at a time. Those in Christ Jesus will have that perfect body in heaven one day, celebrating with the redeemed fitness models we once saw on Facebook. There is room for all of us here and there too. Perfection is not the goal here so let it go right now. Which brings me to my last point:

TAKE A NAP.

Seeya, :JJ

Hydration is Key

dehydrationHydration is key in health and down to the other

It makes everything better from one end to the other.

When I thought a drug might be my saving grace

I found that it was water that was my Lord’s gift of grace.

In 3 days and 2 nights 4,000 ml ran through my veins

In addition to many drugs in my tummy not my veins.

There was sparing of upsets from what I could not tolerate before

That number of drugs with Pepcid became my friend now like never b—–.

My Lord knew then showed my naturopathic Doc a few days later

That I would need to push fluids like never before for now and onto “later.”

So Smart Water and minerals in our Big Berkey will be my constant friend

When isolation of this Shingled hell keeps me from family and friends.

The Lord makes up the difference (as He always has) and grants me sleep

These last few days have been for rest and recovery and the deepest of sleep —

“To die, to sleep – to sleep, perchance to dream – ay, there’s the rub, for in this sleep of death what dreams may come…”

Hamlet does question if even death will bring dreams that will prevent peace when it comes.

But he is wrong for peace is granted here and now for those who believe no matter what may

For those who believe in the Lord who conquered death and knows the beginning from what may.

So once again, a thousand times I shall again proclaim

Alone in my Jesus I will drink the victory only He can proclaim!

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

If you are struggling this night, Gentle Reader, please hang in there.  Let me know your needs and I promise to pray as I lay your alms before our mighty Lord of Lords.  He cares for you, He cares for me.  And Lord willing, we are going to get well sometime between now and the day of His return.  Oh how I do hope you know Him this way?  JJ

O.B. Panties and an HGTV Hangover

Are you going to love it or list it?  Are you ready to see your fixer upper?  I just don’t think this kitchen is big enough for me!  This will all have to be torn out and redone!

And so goes the thoughts in my head the day after being discharged from the hospital.   Since cable TV was my only steady friend and we don’t have cable TV at home, we got really well acquainted in the past 3 days.  I am convinced now that the wood floors in our home are stunning and that we can stay put for awhile longer.  Wood floors are on-trend these days dontcha know?

I also learned that O.B. elastic panties secure blankets over hospital bedrails really well!   When you are on “Fall Precautions” and have a history of seizures, they pad the bedrails with them.  The only problem is that I am sure that wrapping blankets over metal bed rails hardly meets JCAHO requirements for prevention of injury!  They outta have provided bed pads.  Oh well.  Welcome to the modern hospital complete with a 20+ year old hammock sling for a mattress.  Otherwise, the food filled my belly and care was alright.

I was in the hospital after an urgent trip to the Rapid Care Clinic associated with my doctor’s office sent me there on Sunday.  The Internal Medicine Doc said I could get an evaluation from an Infectious Disease Specialist there (which I was later promised in the ER as well).  That never happened.  What did happen was getting pumped with a plethora of drugs that created nausea for the first day and one-half, exhaustion from side effects and lack of sleep, weight gain from 4,000 cc of fluid and food-snacks-with-every-drug-to-protect-my-tummy, and a lesson in humility.

Regarding the latter, I learned that Nurse Practitioners and Physician’s Assistants run the modern hospital in America these days.  Or at least they do for what happens bedside.  I saw both types of professionals; they got to talk to the Infectious Disease Doc but I did not.  Turns out that my acute case of shingles had been seen before so they treated me “by the book.”  Never mind my history of daily seizures and concern for the brain-swelling complications that can come with the worst cases of shingles:  a disaster potential which could change my life even further, forever.  Thank you Lord that I had called the Ophthalmologist on-call the night before and gotten the treatment needed to protect my eyes from the herpes zoster virus.  It is through the blurry vision of an eye ointment that I chat with you today!  The hospitalists never mentioned protecting my eyes from the spread of this nasty, searingly painful viral infection . . .

So I did my time, got my drugs, stabilized a good part of the intractable pain, and got sent home with:  red lesions and swelling on the right side of my face, a 4th day of constipation, lots of prescriptions for drugs and OTC meds, and a renewed sense of what it means to NOT be in charge of your own life, your own healthcare.  I did get to ask questions and for that I am grateful.  I did receive my Lyme infusions of antibiotics before I left to continue that part of my treatment and for that I am grateful.  I tolerated a peripheral line for 3 days without skin irritation and for that I was amazingly grateful.  I did catch up on HGTV enough to last me a good long while and for that I am grateful.  And I was reasonably able to tolerate a modified, hybrid version of my diet from the hospital menu and for that I am grateful.  I was alone for those 3 days and 2 nights yet my Heavenly Husband was always present and for that I am grateful.

There are two other tidbits to note:  I met a lady while walking the halls who was in the hospital for pneumonia.  She’s a smoker and familiar with Jesus Christ whose birth we celebrate at Christmas.  I shared with her a short testimony of how the Lord appeared to be orchestrating the meds I was given during that hospital stay to possibly treat the serious seizures I have been suffering for 5 years.  Please join me in praying that the person of Jesus Christ would become real for her as well:  as her personal Savior this Christmas.

My second point was hidden in the first noted above.  Did ya catch it?  Yes, I have not had a seizure since coming home from the hospital and had WAAAY FEWER since taking Neurontin in the hospital.  Neurontin is not typically given for Non-epileptic seizure episodes but hey, it is commonly indicated for shingles.  Win-win?  I am hopeful.  What if these 5 years of suffering daily episodes are about to end?  It is too soon to tell how this will proceed going forward yet I am grateful for my little Christmas week reprieve for sure!

Merry Christmas to you, Gentle Reader.  Be sure to check out the Christmas Letter from Steve and me posted today as well.  Even in the dark times there is hope since the Light of the World has come as the person of Jesus Christ.  Oh I do hope that you will share with me in knowing this joy today!

And keep an eye on your panties, eh?  JJ

maternity, pregnancy, other uses, panties, underwear, adapted, stretch