Not just another day

In this moment I feel quite normal.  I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off.  You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched hellish experiences of mine have become a normal occurrence around here?  Here’s what I mean:

  • Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
  • Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
  • Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
  • My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
  • Expenses beyond belief take away tremendous resources intended for the future:  a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
  • Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day.  I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes.  This past weekend I missed the lovely snow softly falling outside our bedroom window:  our first major snowfall in the Midwest.  I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow!  If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks.  Those episodes with respective recovery periods totaled about 15 hours today alone.  Lord have mercy!

This is no where near normal.  Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy.  I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic.  One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday.  Somehow I did get some Christmas cards ready-to-go however!  Wow.  That is simply amazing.

Please forgive me that my tone is angry tonight.  I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me.  There are new problems with which to contend.  Tonight I am in survival mode.  It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning:  an expensive treatment of merit I seriously question.  Chronic Lyme disease?  Heavy metal toxicity?  Which one is it already?!  Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago?  Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . .  At least my back is feeling some better though.  Hooray!

So here’s to Christmas cards getting together and less back pain.  I have a roof over my head and food in the frig to munch on shortly.  My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so.  Well there ya go.  Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader.  Thank you.  Here’s a cartoon for you.  You rock!  JJ


On the edge

It’s like a weather forecast.  You see the clouds rolling in as the sky darkens.  You hear the gurgle of thunder off in the distance, knowing that before long the sky will open with a whoosh of driving rain.  It might be your bones, it might be your joints, but whatever it is you know that a lightening storm is not too far off joining the cacophony of bodily mayhem.  If you are trying to sleep, well it’s pretty darn likely that ain’t going to happen for awhile!

But what if it isn’t raining?  Sure it’s dark outside and you can’t see the stars.  Perhaps it’s just the dreary November cloud cover characteristic of the Midwestern sky this time of year in the United States.  Late Fall brings down the leaves, brings in the cold, and brings on the physical anomalies.  And for me, it’s a near constant state of a symptom matrix that confuses even the best doctors around.  Perhaps it’s a little Fibro thing?  Arthritis?  Health begins in the gut you know so it’s gotta be IBS, no?  Or maybe it’s Chronic Fatigue?  Surely there’s something hormonal going on or maybe it’s the dreaded Late Stage Lyme disease saga.  Then again, Chronic Inflammatory Response Syndrome is the term in vogue these days for those exposed to mold and don’t fit the typical medical profile.  Yeah, it’s almost Thanksgiving and I’m sitting here in a 71-degree home with 3 layers of clothing on wondering where I can find some fingertip-less gloves . . .

I’m on the edge.  You could probably illuminate a lamp of low wattage with the excess electrical activity emanating from my fried central nervous system.  Last night there was a “fireworks” show of seizure attacks that defied definition.  Was it the K2D3 supplement trial or the exposure to questionable “energy sources”  from a new manual therapy practitioner?  All I know is that my husband sure did not get much sleep last night!  Yes, I got up this morning and helped him prepare his dish-to-pass for a United States Canoe Association meeting and awards celebration today.  Poor guy, driving 4  hours round trip, leading the meeting, then paddling in the cool lake waters on 4 hours of sleep.  I sure hope he gets a long nap tomorrow before going back to work on Monday . . .

Hey, this is a venting blog tonight and I got a bad case of things at the moment!  Where to go from here?  Purge some gratitude through this neck headache and get over it so I can get some sleep as well.  Here we go:

So grateful for the opportunity to get some extra sleep after Steve left, clearing my day with no additional obligations until nightfall.

I am grateful for a bit more energy that allowed me to complete the Winter clean-up of our backyard and even prepare a small garden bed with the neighbor girls as a surprise for their mom.

Glad also for the yummy dinner of pan fried cod and chef salad with my latest health drink that actually tastes good:  unsweetened vanilla almond milk blended with organic carrots!

Oh Lord, thank you for the sweet time with my Stevers this evening watching a captivating DVD of some young missionaries and their wild adventures in the Far East.  Oh to trust You in a moment by moment basis with faith and enthusiasm too!

Yes, Lord you are so good to me.  Thank you for my loyal puppy who keeps me company all of these days when I am home alone recovering from illness.  I said to Steve this evening that not being able to work has brought me more into a traditional role of a woman in our marriage:  a Biblical role as helpmate.  If we had children together then my life might be about raising them or caring for our grandchildren.  That is not our story.  Things are simpler than that:  my role is to be the helpmate for my beloved while I also take the steps needed to recover from illness.  My Heavenly Husband has provided the time and space for this transformation to occur.  No career pursuits needed this time.  This is my calling.

Sounds like a topic for another blog!  To find one’s calling is a treasure some folks never find.  I am grateful to feel and know that I am exactly in the center of the Lord’s will for my life even if it’s on the edge at times.  Gentle Reader if you are feeling on the edge, I invite you to dangle there just a bit, reflect there long enough to discover if maybe there is a greater purpose for being there?  Try a gratitude list as you evaluate things and see if you come up with something good as I have done here.  The process of doing so is like banking on the promise The Word gives us in Romans 8:

28 And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

Thanks once again for listening.  Take care and goodnight, JJbedbugs