Nightly mayhem

If it weren’t bad enough that the beast meets me as I am falling asleep each night and before most naps, add to it the treatment rituals that make my bedtime routine laborious to say the least.

Here’s my brain dump to maintain my sanity, my health . . . Such as it is, that is!

  1. Turn on the electric bed warmer pad ahead of time to warm the sheets then turn it off when going to bed. Warm sheets decrease the shock of otherwise cold sheets that have triggered episodes in the past.
  2. Adjust the thermostat if the weather is cooler so we don’t overheat when sleeping.
  3. Remove the comforter and 2 decorative pillows from the bed and place in guest bedroom.
  4. Position a pillow where my knees would go and another where my back would go and another to hug in front of me. This allows positioning for what therapists call “back precautions.” Knees slightly bent with “neutral spine” alleviates pressure on my low back.
  5. Foam pillow top over the mattress cushions the bony prominences and joints. So comfy!
  6. My Pillow-brand pillow contours to the head-and-neck nicely for switching from side to back overnight without pushing my head too far forward off of the mattress.
  7. Wear a long-sleeved shirt over my bed clothes to keep my neck and shoulders warm overnight.
  8. Take nighttime supplements and hormonal creams but not too close to bedtime for the former.
  9. Moisturize with various products for various body parts!
  10. Now apply an eye cover to create darkness for better sleep.
  11. NEW: pack of ice wrapped in a hand towel placed mid-sternum. Calms vagus nerve to actually decrease convulsive episodes!
  12. Temporary addition: cardiac event monitor control pack tucked into a pocket for 7 days. In the event of an episode or worrisome symptom, get up and go into the bathroom to record the incident. (The unit has no night light!) This is one of SIX tests in a workup going on right now before seeing a cardiologist who specializes in electrophysiology. This all came about when I noticed some heart rate variances during episodes. More clues towards a potential cure? We shall see.
  13. Apply nighttime specialized dental appliances for optimum TMJ positioning. Reduces jaw pain.
  14. Get up in the middle of the night (or morning) to complete sinus rinse procedure if I wake up with annoying sinus drainage. Go to the front bathroom if Steve is still sleeping. Attempt to go back to sleep or do a passive activity until I am tired again. Eat, take care of the dog if needed.

Do you see a typical nightly skin care routine in there? Nope. I guess I am a “high maintenance” woman of another type. Exactly what type is that? A very odd one perhaps! Such is life. Better go start the routine . . . It’s nearing 5:00 a.m. and my bedtime is approaching. Yes, things are nearly reversed again in an attempt to wait until I am exhausted before trying to sleep. Seems to help, except when I have an appointment the next day. Then I spend the next 24 hours trying to catch up. Ugh. Sigh.

Our pup is so very confused by this routine! Good thing she has furry eyelids to keep out the light. Maybe I need them for my nightly mayhem too? 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