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

The Price of Admission

Garfield2016-01-15

Garfield tells it like it is and that is the way I like life to be as well . . .  No pretense here, ever!  He must be chemically sensitive too?  I digress . . .

To get well from a serious illness, one consistently pursues recovery as if he or she is on a journey, not sprinting as if in a race.  My journey of late has included a trial of molecular hydrogen, nebulizing sea water to ease a chronic sinus infection, and experimenting with a Glutamate-Aspartate Restricted Diet (GARD).  Yeah it’s never just one thingy with me!

Some additional research and a consultation with my Doc suggested a link between the GARD, sinusitis, and latent Lyme disease that might be addressed with a course of antibiotic treatment.  Yes, IV or IM Rocephin may address all three.  Rat studies have shown that Rocephin can lower glutamate levels thus helping to raise seizure threshold.  Since I am a card-carrying lab rat anyways it seemed logical to go for a trial of antibiotics for a week then re-evaluate my tolerance for it during my next Doc appointment in 7 days.  Very likely the treatment will continue for several weeks.  Today was treatment day #1.

I began this process pressing forth to complete a lab test beforehand so as not to skew the results with the upcoming antibiotic.  The preparation required a restricted diet of only 2 foods for 24 hours, fasting, and some stressful sampling procedures all ending just one hour before the first IV treatment at the hospital.  The Lord sustained me as I assembled the kit and wolfed down a supremo salad that I had prepared the night before.  I left our home shortly after the FedEx truck picked up the completed test kit while giving our dog something to bark, bark, bark about.  The wings of my Savior, Jesus Christ carried me to the hospital on just 3 1/2 hours of sleep:  less nervous and ready to blast the heck out of whatever might be keeping me sick.  Let’s do this!

Not so fast though!  Just before heading into the Outpatient Clinic I had a violent expulsion of stool!  Whaaaaat?  Good golly!  Looks like the Lactulose test prep was taking effect all at once!  Now what should I do?  I was soiled through all of the layers of clothing I had worn to keep warm.  Fortunately this all happened in a hospital where they have linens and hospital scrubs available.  Alright so I cleaned up, put on the call light, confided my plight to one of the nurses, changed my fashion motif a bit, and returned to my chaise lounger a little wet, a little shook up from everything.  let’s do this?

The biggest hurdle for me in receiving the 50+ IV treatments and 50+ lab draws I’ve had these past 4 years has always been the needle stick procedure.  Virtually every time a needle either goes in or out it triggers massive convulsive episodes.  Fortunately Jennifer, the RN, has more tricks for poking rolling, spindly veins than anyone I have ever seen for care.  The first stick failed resulting in the usual shakes and shouts.  So we just waited until my world calmed down and I got a few more moments of the best distraction ever under my belt:  HGTV on the little swing-away monitor at my station!  Watching Island Hunters and the like has saved me from tears many times for sure.  (Such a treat!  We don’t have cable service at home.)

Gratefully the second stick was successful.  Gratefully there were no ill effects during the infusion just fatigue.  Gratefully I was able to run an errand to the meat market secretly in wet jeans underneath my scrubs before returning home.  Gratefully the nap came easily after showering and without seizure attacks.  The hell returned later in the evening but overall I got away with at least one fewer episode today.  God is good.  He carries me through so much!

I ask the Lord often why things always have to be so difficult for me?  I really don’t get any answers other than to know that He sees my suffering and promises to love me through it all.  That love is tangible in the graciousness of my beloved husband, Steve, who listens to my stories and sees me through the roughness that characterizes some part of every day.  Perhaps someday I will get to see why the “price of admission” for me to get through my life has been so devastatingly high.  This stuff ain’t for wimps ya know!  In the meantime I will carefully wrap the IV in my arm before showering, clean myself up, run more loads of laundry, and shed some tears along the way.  I am not alone and know what to do.  I have been through IV treatments before and so have many of my fellow sojourners.  We can do this!

At least now there is fresh bacon in the house.  And that Gentle Reader is a mighty good thingy!  I am sure Garfield would agree!  JJ

He’s Still on the Line

hold you tight

Long after my beloved is asleep

Devastated by unanswered prayers and sorrows so deep

I lie awake my body tossing, trembling

Such are the storms of night:  unending.

From wherest does my help come from

When prayers bring no relief with each day’s sun?

The hopes are dashed, the relief doesn’t last

And the damage, the pain continues no less.

So many nights where nightmares became reality

So much suffering sends off all memories of normalcy.

People leave your life even when they like you

For fear, for powerlessness, for horror of what is your truth.

New sojourners may come only to wallow awhile with you

Should you happen to find a way out they will be long gone too.

Choose wisely your inner circle my friend

Make sure the Lord is closest-in when the nightmare ends.

He will never leave:  His love will fill the gaps

Where others must fail, supernatural strength is what lasts.

You can call Him near, like a salve to the wounds of war

Then peace will come . . . you can carry on from there, dear one.

Now here’s a love song that reminds me of these times with my beloved Steve:  he holds me close while the Lord is still “on the line,” listening to our hearts and holding both of us near to His own.   From a simpler time:

Still on the Line