I Think I Finally Found It.

Ironing out the last CPaP problem . . . .

I’ve been searching for a comfortable CPAP pillow ever since I was diagnosed with OSA a few years ago. The result has been that I’ve wasted a lot of money. The discomfort I’ve coped with has never been enough to affect my compliance with therapy–I’ve never missed a single night on the machine, and I even use it for afternoon naps (which rarely happen any more).

Eventually I settled for a rather flat “travel size” pillow (approximately half the size of a standard pillow). It worked reasonably well for more than a year, although I had to elevate the edge that was under the CPAP mask and slant the pillow towards my back (I always sleep on my left side, for reasons more numerous than can be discussed here).

Then I thought about what I was really doing with that configuration: I was sleeping on a sort of triangle shape. Immediately I remembered the large L-shaped “body pillows” I’d seen over the years, which are usually marketed to pregnant women.

The problem was that I didn’t need a big pillow just to adequately support my CPAP mask and upper back. I looked online and found that now they make small ones, too, with arms that measure about 20 inches each.

I’ve got a bunch of old standard pillows, so I suppose I could have remodeled one of them into the shape I thought would work, but my hand neuropathy has been very bad lately, and I don’t have access to my sewing machine, so I decided to splurge one more time on a new specialty pillow.

The Major Online Retailer delivered my purchase promptly enough; however, I could tell right away there was going to be a problem I’ve encountered before: it was stuffed so full of fiberfill, it was HARD. There was no way I was going to be able to sleep comfortably on it.

But there was an easy solution to that: the pillow came with its own fitted, zippered pillowcase, which I could fill with the excess stuffing in the pillow, and then I’d have two softer, flatter pillows for the price of one.

So that’s what I did: I opened the end seam and pulled out half of the fiberfill. After shoving that into the zippered case and distributing it, I distributed the remaining filling in the original pillow and re-stitched the seam without too much discomfort from my simultaneously numb and painful neuropathy fingers.

Of course, that meant I no longer had a custom pillowcase, but that was easily remedied. I cut two 4-foot lengths of 6-inch wide, white polyester stretch stockinette, a huge roll of which had been ordered for me a year ago by a homecare nursing agency (which was visiting me after a hospitalization and a 2-month stint in a rehab home last spring). I hemmed both open ends of each piece–a leisurely day’s work–and then I stuffed the pillows into the tubes.

With the angled pillow positioned at the head of the bed as shown in the illustration above, and with my head resting at the apex (essentially with the pillow hooked over my bottom shoulder), I get the right height of support for my inflated cloth CPAP mask, and perfect support behind my neck and upper back. After controlling for other factors that affect my ability to have quality sleep, meaning an AHI of less than 2 (actually, I prefer it to be less than 1, but I’m a perfectionist), I’ve eliminated the neck- or shoulder-ache problems that I had experienced with all of the other pillows I’ve tried.

Success at last!

If you’ve been having issues with neck or shoulder pain, or poor support for your CPAP mask, maybe you should try a right-angle pillow, too.

Even More Sad News.

Mama, an avid reader who became blind, is seen here listening to an audiobook.

This Month, my Mother Passed Away.

(What follows is an edited version of her obituary, written by my sister. )

Joan Alice, or “Joanie” (as everyone called her), 88, died on December 11, 2020.

Joanie was born in Chicago, Illinois, to Frank and Lillian Olejnicki Fijolek, and was a true city girl until moving with her husband, Ted, to Lindenhurst, Illinois, in 1956.  Ted and Joanie were among the pioneers of the village, and their early years were chronicled in her book Love, Joanie: Letters from the Suburban Frontier.

Joanie was a career homemaker.  A devoted wife and mother, she was an excellent cook and slapdash housekeeper who preferred digging ditches, hauling dirt, gardening, listening to opera and reading to such drab chores as washing dishes and/or ironing.  She enjoyed camping, and made even the most primitive campsite into a true home.

She was also a talented artist in woodcarving, clay sculpture and painting. Her earliest works were displayed at the Garfield Park Conservatory in Chicago.  In later years, she made small toys for her children, and contributed her artistic gifts to her CCD class at Prince of Peace Catholic Church in Lake Villa, Illinois.

In 1989, Joanie moved to North Carolina with her younger daughter, where she continued to be a full-time mama, grandma and great-grandma.  An avid reader, she was an active patron of the local libraries until her disability and vision loss.  She joined the NC Library for the Blind and Physically Handicapped in 1998, and had enjoyed over 5,000 audio books prior to her death.

Mama’s maiden name means “violet” in Polish. Purple was her favorite color.

Joanie is survived by her two daughters, five grandchildren, six great-grandchildren, four nieces and one nephew. She was preceded in death by her husband, Ted, in 1978; her beloved brothers, Raymond “Raymie” Fijolek in 1938 and Norbert Fijolek in 2005, and her sister, Irene in 2017.

In accordance with her wishes, there were no services.  In memoriam donations may be made to Friends of the North Carolina Library for the Blind and Physically Handicapped (FNCLBPH), 1841 Capital Blvd., Raleigh NC 27635 (so that others may read), or to an animal rescue of your choice (so that others, like her cherished Tuffy and Kiki, may live).

“Though her life was long and productive, she looked back on it with less than satisfaction, dismissing her many accomplishments as mere accidents in an otherwise unremarkable existence… when I asked her what she would like as her epitaph, she thought for a moment, and said wistfully, ‘She meant well.’” (Love, Joanie, p. 274.)

If you would like to read Joanie’s book, it’s available at Lulu.com:

 

 

More Sad News.

My Kitty died last Thursday, November 19, at 11:18 am.

Oliver “Kittypoo” in his prime.

When I adopted him from the animal shelter fifteen years ago, they estimated his age to be about three, so he was approximately eighteen years old. His health had been steadily deteriorating since the first of this year, so my son and I knew what to expect, but it’s never easy when the inevitable finally happens.

Oliver was “Mr. Personality,” liked all humans, and enjoyed talking to people. He took his responsibility as a companion seriously, and was loyal to his last breath, having chosen to be with me when he collapsed, and died within five minutes.

Because my son was out of town, my daughter came to help. She laid him to rest in the cozy kind of cardboard box in which he loved to play, with his crinkle sack for a cushion, and one of my son’s old T-shirts for a coverlet. His favorite crocheted toys, a bootlace, a handful of kibbles, and a kitty treat accompanied him as “grave goods.”

He rests now in my back garden, not far from my window.

Oliver “Kittypoo” set the bar at its highest, having lived as the perfect example of unconditional love. May we meet again, my most faithful friend!

Sad news.

My dear son-in-law died at home early Wednesday morning, after a long struggle with serious complications from Type 1 diabetes mellitus. He was only 46 years old. He and my daughter had been married eleven years.

My daughter and her husband (2009).

Important Physical and Mental Health Message:

This is not about expected, natural, normal, typical “age-related” decline. This is about innocent people being made to suffer solitary confinement, regardless of its cost to their well-being.

Continual Revelation

Unlock the Lockdown!

The elderly and their families are suffering disproportionately from the nursing home lockdown.  Please help by sharing this video, and contacting government and public health officials about this heinous state of affairs.

View original post

In the Research: Autoimmunity and Blindness.

https://www.aafp.org/afp/2002/0915/p991.html

https://pubmed.ncbi.nlm.nih.gov/27112687/

https://journalretinavitreous.biomedcentral.com/articles/10.1186/s40942-017-0104-9

No part of the body is safe from autoimmune attack. Vision loss due to autoimmunity can occur relatively quickly. Rapid-onset blindness may be especially prone to provoke a condition called Charles Bonnet Syndrome (CBS): when the brain tries to compensate for loss of visual stimulation by its construction of vivid hallucinations. Learn about CBS here:

https://www.abc.net.au/radionational/programs/allinthemind/seeing-when-youre-blind/12503398?fbclid=IwAR1yz-ErtIDH8gLhCPSA0EtYuoWf_NjfoZFccLdzfIjl9erfobzSTJICroQ

 

Living with Chronic Pain: Transcutaneous Electronic Nerve Stimulation (TENS).

I had last owned and used a TENS unit back in the late 1990s. I’d picked it up at a second-hand shop for $20.00, for use to relieve chronic pain from a broken sacroiliac joint and its related referred leg pain (sequelae of a motor vehicle accident in 1992). Eventually the machine got worn out, but it was more than 20 years before I got around to replacing it. (In the interval, how did I cope with the continued pain? Poorly, to put it succinctly.)

Last year, I remembered the old TENS unit, and began shopping for a new machine. I was surprised to see that the price wasn’t very much more than what I’d paid for the used one so long ago. The only difficulty was finding one that was as easy to use as the old one had been: they can come with a lot of what I consider to be superfluous bells-and-whistles. After some study of what was on offer at A Major Online Retailer, I found a fairly simple machine, with just a few more settings than the old one had (it had essentially just turned on and off, and had a simple intensity adjustment): in addition to intensity, I could now adjust the pulse frequency and set a timer.

An inexpensive TENS unit. (For illustration purposes. Not a product endorsement.)

I used it a few times, and then had to put it away in order to deal with other aspects of my multitude of health problems. For one thing, my skin had become so fragile from my being on a high steroid dose, I was afraid to use the machine. Eventually the state of my medical care progressed: a rheumatologist began to wean me off of the steroid, the wounds healed, and my skin began to return to a more normal state of durability.

Although I had continued to have the old chronic sacroiliac pain problem that had plagued me for all those years, my recent return to using the TENS unit was prompted by another complication of the steroid therapy: compression fractures of two vertebrae. The acute phase of that injury involved excruciatingly painful muscle spasms, and it took some trial-and-error for my primary care doctor to find an effective muscle relaxant drug. Unfortunately, to be strong enough to relieve the pain, the drug was too strong in other ways, causing intense dizziness (no fun, on top of an exacerbation of vertigo from autoimmune inner ear disease, which had started up again when the steroid dose was weaned low enough to not suppress the symptoms any more), and overwhelming brain fog. So I could take it only twice a day instead of three times, meaning that there was an unavoidable period of no pain relief between doses.

In time, the spasms finally stopped, but the change that had happened to the supporting skeletal structure of my back then led to another problem: a new sacroiliac joint strain on the opposite side of my pelvis. This was another screaming-intensity pain, but the muscle relaxant had no effect on it. I don’t take narcotics (they make me violently ill), and NSAIDs are contraindicated while I’m still on the steroid (not that NSAIDs had ever helped with the pre-existing sacroiliac pain; only “prolotherapy” injections had even a temporary effect for about three months at a time).

I became desperate enough to take an over-the-counter drug I’d avoided for many years, because it depresses my breathing: acetaminophen, aka paracetamol. I already have obstructive sleep apnea, and although it’s controlled with CPAP, I certainly don’t need more breathing problems. But the pain was so bad, it was completely depriving me of sleep, and because acetaminophen also knocks me out, I took it for several nights. Of course, my CPAP Apnea-Hypopnea Index (AHI) numbers shot up unacceptably high.

That’s when I had the proverbial face-palm moment, and remembered the TENS unit. I dug it out, and put on the electrodes. For the first few hours, the relief was inadequate; then I figured out that the intensity needed to be set at just below the point where the pulses were themselves painful. But it took all day, until bedtime, to exhaust the pain neurotransmitters, and achieve an absence of pain. I took off the electrodes, put on my CPAP, went to bed without taking any acetaminophen, slept with only one mercifully pain-free wakeful period – and my AHI went back to normal. I’ve continued to use the TENS throughout waking hours, and by itself it’s kept the pain at bay.

I’ve laid in a supply of 9-volt batteries for the machine, and have ordered a large set of replacement electrodes: if there happens to be tension on the lead wire, an electrode pad will pull apart from its lead connector; it can be fixed by pushing the end of the wire back in and securing it with medical adhesive tape, but eventually the electrode pad also loses its stickiness, and the whole thing needs to be replaced.

If you think you’d like to try TENS for chronic musculoskeletal pain, don’t do so until you’ve read this article (https://www.nhs.uk/conditions/transcutaneous-electrical-nerve-stimulation-tens/), and have talked to your doctor about it. You may be required to have a prescription.

Below are some articles which summarize the state of research into the efficacy of TENS treatments:

Click to access CD011890.pdf

and

https://www.cochranelibrary.com/en/cdsr/doi/10.1002/14651858.ED000139/epdf/full

and

Click to access nihms620660.pdf

Why did the TENS help with the terrible pain I was having? Perhaps the electrical pulses somehow healed the strained tissues around the sacroiliac joint. The following article discusses how TENS may produce healing:

Click to access cjps20237.pdf