It’s All Going to Hell

It has been  three months since my last post.  I have spent these months searching for medical help with my Delayed Sleep Phase Disorder. None of the so-called “sleep” doctors I’ve been to ever mentioned the possibility of DSPD.   In desperation, I just sent an email out to a neuropsychologist because the stress has affected my usually-easy-going temperament, and I don’t even like myself any more.

Also, during these few months, the family brought a rescue dog home.  He was smart, sweet, and cute, but he would not stop biting when playing.  He went back to the rescue.  So, last week, they brought home a cute, sweet, gentle rescue kitten, who is still sequestered in the upstairs bedrooms because their current prissy cat refuses to have any of it.

My plans, after the holidays, is to go the shelter and get a senior cat who just wants to snuggle. I need the companionship.  I need the touching.

I need to find a way out of his personal sleep hell. It has affected my digestion, because when I eat depends on when I sleep.  When should I take my meds?  I often don’t even know what day it is.  It’s making me crazy.

ADDENDUM:  My daughter just told me that when I got home from the store yesterday, I left my car running in the driveway.  It’s a good thing my grandson noticed the car’s lights were on.  I am definitely losing it, fast.

Ooops, I did it again.

With my DSPD, I tend to fall asleep between 3 am and 6 am. Two nights ago, however, I was never able to fall asleep at all. So, I got out of bed at 9 am, took a shower, and sat down at my computer and ordered some Sleepy Time Cheeba Chews from my local medical marijuana dispensary. There are 20 chews for $30. Each piece is a 5.43 mg of a combination of THC and CBN.

I haven’t had any edibles for a while because they are so expensive. At least they are for me. 5 mg is considered one dose. It usually takes me 20 mg to have any effect.

Last night, I didn’t want to take any chances. I had to fall asleep. So I took 30 mg. around 11:30 pm. Got me totally stoned, so that all I could is lie in bed and space out. And I didn’t fall asleep anyway until 3 am.

I’ve done that before, took too much and just had to ride it out. It’s not a bad sensation, but it’s not really what I’m trying to do. I’m trying to fall asleep.

It is now after midnight, so I’ll try taking 3 chewies first, and it that’s not enough, take another one. They take from 1/2 to 1 hour to kick in. In the meanwhile, I’ll get ready for bed and work on a crochet project if my arthritic thumbs can take it. Maybe watch some tv. Or read. When I start getting sleepy, I’ll go to bed.

It’s all trial and error. No one knows how the cannabinols will affect an individual. But hey, I’m a risk taker, right?

09/18/2020, 7:45 PM

I never worried about getting old. I figured that I would deal with it when it happened. Well, it happened, and I’m not dealing with it very well these days. Objects seem to fly out of my grasp. I’m constantly misplacing things. If I get down, I can’t get up without help. I trip when there’s nothing there to trip on. The technology that I used to use without a second thought now requires too much figuring out. It doesn’t help that, back in March, I accidentally sent my removable partial denture down the garbage disposal, making it unusable, and it’s taking forever to get a new one. I lose track of my finances and find myself owing more than I thought. My crazy sleep pattern doesn’t help, of course.

It wouldn’t have helped if I had worried about getting old before it happened. There’s no way to have known what it was going to mean for me. Everyone is different. My mother lived until she was 94, but her last 10 years were lost in dementia.

I wonder who those old people are who go out dancing, marathon running, paddling canoes. Of course, I’m assuming the Pandemic has put the kibosh on all of that now — unless they are the deniers. Good luck to them, I say.

I finally let my hair go gray more than a decade ago, and I was very happy with it. Only now, my hair is thinning. Not so happy, now.

The other day I took a magnifying mirror outside so I could see my eyebrows, which are also thinning – except for the long wiry white ones, which I plucked out. I suppose I could get one of those eyebrow stencils, that so many of the folks on tv seems to be using, but I think they look horrible. Not many choices here for me.

Over on Ronni Bennett’s blog, she has been chronicling what it’s like to get older. Exactly my age, she is now chronicling how she is dealing with the pancreatic cancer that is literally killing her. She is heroic in dealing with her situation. I wonder how I would handle it.

Don’t get me wrong. I am grateful that I can still drive, blog, see the tv, chat on the phone with the one close friend I’ve been able to make in the ten years since I’ve moved here (more on that another time). Grateful for the support of my family, especially during this time of quarantine.

The one thing I certainly never expected to happen when I got old is the Great Orange Turd, who has made all of our lives a nightmare. And I just heard that Ruth Bader Ginsberg has died. Fuck it all.

Dear Diary: Late, Again

Here I am, already having missed a day venting my madness. This being late seems to be a trait I developed in my very late years. I used to arrive at my destinations at least 10 minutes early. None of that matters much any more anyway — and not because of the Coronovirus Pandemic, which has caused a lock-down and which gives folks too much time on their hands.

Today I’m mad about “Time.” It really seem to go faster as you get older. It takes me longer to do everything, including figuring out new things on this blog platform. You might have to bear with me for a while as I continue to climb the learning curve.

When I moved in here with my family, my grandson was 5 years old. Now, at age 17, he has completed his high school education as a home schooler. Twelve years, in the blink of an eye.

Today, I’m mad at Time, which can take me at any time. And I can’t turn it back to fix what I screwed up.

I will try to be on time tomorrow.

The Plague of Elders

I don’t mean that we Elders are the plague; I mean an awful lot of us Elders are afflicted with the same “plague.” It’s called There are lots of kinds of insomnia and there’s no cure for any of them.   There are a host of “remedies”, however, and I have tried all of them (see the end of this post), to no avail.  So had the author of a book I read several years ago, Insomniac, by Gayle Greene.  The book was published in 2008, and you would think there would have been some progress made since then with a treatment that works.  I contacted Greene last year to see if she ever found a way rid herself of insomnia  Basically, she said no; all she could do is schedule her life around it when she can, take sleep meds when she has no other choice, and keep looking for a solution.

Here’s a review from The Journal of Clinical Sleep Medicine Insomniac, by Gayle Greene, provides an interesting perspective and offers support to those with treatment resistant insomnia. It also offers a fresh perspective to readers who are also medical providers. The author defines insomnia in a way that sets the stage for the discussions that follow, as “Insomnia is when you can’t get the sleep you need to feel good, for no reason other than that you can’t.” By the end of the third chapter, the reader has a very clear understanding of the problems faced by insomniacs.

Greene’s book is both a memoir and a research paper. If you don’t read the book, read the whole review.  Here are some of the facts she shares in her book

A third of the American population suffers from insomnia enough to complain about it; in people over 65, estimates are as high as 60 percent.

⇒  Sleep has little part in medical curricula today, when doctors get an average of one or two hours’ instruction in sleep and sleep disorders.  The patient with a chronic complaint of insomnia will usually be referred to a psychiatrist.

  With all due respect, this is so ass-backwards, Greene states. The reason I want more sleep is so that I won’t feel depressed.  I need sleep not to avoid my life, but so that I can live it.

  This is what she learned from interviewing a range of sleep researchers and experts (all given citations in her book).  We do not know….the nature of the basic neural mechanisms underlying primary insomnia.  Nor do we know the identity of specific neurotransmitters that might be involved, or even whether specific neurotransmitter systems are involved.  The genetics of the disorder are also not known.

 The behavioral model (change your attitude, change your ways) has had, perhaps the unfortunate consequence of discouraging research into the neurobiology of the disorder.

 Insomnia is a subjective state..  There’s no blood test that it shows up on, no biopsy or x-ray that picks it up, and it doesn’t even show up on the EEG….. How much easier it is to tell us, as many clinics do, that we have “sleep disordered breathing,” or apnea.

  Exercise helps some people, but not all. “In order to make a difference, it has to intensive, enough to raise the core temperature (inside body temperature) to two degrees Fahrenheit for about twenty minutes, which happens with twenty to thirty minutes of aerobic exercise….. Since only people who are in shape can sustain vigorous exercise for twenty minutes or more, they’re the ones whose sleep is likely to be improved.

  Some billionaire who has a relative with terrible trouble sleeping…should endow a private foundation. There should be patient advocacy groups for insomnia, but they’ll need to stay independent of the pharmaceutical companies.

I wish every sleep doctor would read Greene’s book, which explores the various and complex reasons why folks have insomnia, including the gut-brain connections and the individual ways that insomnia manifests itself.  For example, I have the kind that prevents me from even falling asleep, from having my brain trigger what Greene calls the “sleep switch.”  I get relaxed and tired, but that last step evades me.

At the end of this month, I will have a sleep study.  I am going to give the doctors there a copy of this post.

Of all of the remedies I have tried for my insomnia,  I have to admit that I like the effect of medical marijuana (and I like the buzz I get before I fall asleep).  But trial and error has proven that I need sometimes 4 times the recommended dose to have any effect on my sleep.  That would cost me several hundred dollars a month, and I can’t afford that.  CBD helps with my daytime energy and mood, but has done nothing for my sleep issues.  And it’s not cheap, either.

I even bought some EMF fabric shield to cover my electronics at night. At my age (80), doctors will not give me prescription sleep meds.  Hell, I’m 80.  What’s it going to do, kill me?  Not sleeping is killing me and is depriving me of having any kind of satisfying life.

I no order of chronology or non-effectiveness, here is a list of what I have tried.
  Soto Bio-tuner; hypnosis; environmental changes; behavioral modification; yoga breathing; every pain and sleep-associated OTC on the market; a range of herbal, amino acids, and other supplements (sometimes combined); oxycodone (I’m running out of my old dental RX; I only take it when I can’t take the sleeplessness any more); binaural beats; relaxation, meditation, and music tapes; hot showers; massage (when I can afford it); decades of depression meds; tapping……..

Badly arthritic knees and a troublesome torn rotator cuff preclude me from doing the kinds of exercises that might tire me out enough to crash into sleep.

“Set your alarm and make sure you get up every morning even if you are tired,” they tell me.  Yeah, sure.  After finally falling asleep at 3 a.m. or so every night, I’m not about to get up at 9.  Maybe 11.  Sometimes noon or later.  When I finally sleep, I often sleep deeply and have great dreams.  But I miss half of the day.

There are still no advocacy groups for and by insomniacs to help spread the word and urge researcher and doctors to keep digging to discover the biological insomnia triggers and causes. There are plenty of support/forums for patients, but all those do is give us more places to complain.

The Eyes Have It

I crave the cosmic and the common,
refusing to sever half my soul.
I choose to grow in all directions:
to grow both fruit and edible root;
to glory in the ground and desire the sky;
to stretch roots across acres
and reach for the bedrock;
to rejoice in the changing shapes of the seasons.
I eschew the single minded vision.
I am all Eye.

I wrote this when I was in my mid-thirties, when life was an adventure. At almost 80, my life now is a different kind of adventure.

These are my eyes as of last week,  Something going on with with the right eye.  The eyes don’t have it any more.

And it’s more than the eyes.  The WordPress I used more than a decade ago is a different animal.  I’m on a very slow learning curve.  But they say that learning new things is good for the brain.  Maybe so, but it’s not always good for the stress..

As I get older, I need things to be more simple. Only nothing is simple these days.  Even though the “Ayes” had it in Washington and voted to impeach the Big Orange Turd, it’s still complicated, and it’s not going to be easy.

The Gaming Life

Everyone in my family plays computer/video games except me. For the most part, it’s a generational thing, and I’ve posted before about how I feel about it.

My 15 year old grandson plays with teens he’s met in real life and online, and their goal is to get a team together to play in a tournament. ESports. Yes,it’s a thing.

According to Marcus Clarke of computerplanet.co.uk, gaming is turning into a serious profession. eSports, video gaming competitions, are expected to become a billion-dollar industry by the year 2018, with millions of people visiting eSports events in person, and even more people streaming them online.

Recently, the International Olympic Committee (IOC) has stated that professional gamers spend as much time practicing as professional athletes spend in training. They also said that “the Summit agreed that ‘eSports’ are showing strong growth, especially within the youth demographic across different countries, and can provide a platform for engagement with the Olympic Movement.” Although for true fans eSports do not need to be compared with other sports to be considered valuable, it is certainly positive to see the world finally acknowledging the effort we put into video gaming.

 

I know that there’s no turning back the clock on computer games, and making them a way to accumulate big bucks only solidifies their place in our culture.

As I notice the time that my grandson plays gaming, however, I’m concerned about the sedentary lifestyle that serious gaming ensures. So, in our family, folks, including my grandson, wear a “Fitbit” type bracelet set to remind them to get up and move every so often.

It’s a strange new world that necessitates being reminded that the body needs a life as well as the brain. I can’t help remember an old Star Trek episode with aliens that had big brains and frail bodies.

It’s going to be interesting to watch my grandson and his teammates try to enter the world of eSports. He’s well aware that they will probably wipe out during the very first round, but a least there will be no broken bones or concussions. As with kids playing any sport, parents need to be aware and involved to make sure that their kids are playing it safely.

As for adults — hell, who wouldn’t want a chance to win over 2 million dollars sitting at a computer playing a game. They just better invest some of that in a Fitbit.

Death With Dignity

The case for “Death with Dignity”

I have a unique relationship with death. My father was an undertaker, and we lived in an apartment above his business. Contemplating death and dying — my own and others’ — has been a part of my life since childhood. I have sat vigil during the hours and days of the deaths of both of my parents. At the age of 77, I am closing in on my final years. I have no control over when or why I will die; but I am learning about the choices I have about “how”. What I have come to believe is that it doesn’t matter what one believes about an “after-life”; what is important is to live fully while embracing the fact that we, after all, are all “terminal.” Those individuals whose religious beliefs preclude them from participating in such a process can follow the dictates of their religions, but those of us who have different beliefs should be allowed to make our own choices.

The Commonwealth of Massachusetts is once again considering a Death with Dignity bill. Modeled on the Oregon law, H 1991, Compassionate Care for the Terminally Ill Act, would give terminally ill people more freedom, control, and peace of mind at the end of their lives. It is called “The End of Life Options Act”. I noticed that both the Northampton City Council and the Amherst Town Meeting passed resolutions in early November that called on the legislature to enact “The End of Life Options Act” (H1194 and S1225). I urge other municipalities to become familiar with the intent of this bill and take action to lend their support.

Seven out of 10 Americans who support the end-of-life option allowing qualified terminally ill people to end their lives through physician-prescribed medications support having a process to enable terminal patients to choose how they want to die. Such laws have enacted and practiced successfully in other states. I believe this bill has strong safeguards to ensure that no one – including people with disabilities, the frail elderly, and the low-income –could be coerced or pressured to end their lives rather than live longer or seek continued treatment for their terminal illness.

This is NOT assisted suicide, but rather an option to give people the right to choose to end their suffering (and that of their family) when faced with a prolonged and painful dying process.

I support this bill because I have sat by the beds of both parents as they suffered through their last days and hours of pain before death took them. When my father was in the last stages of pancreatic cancer in 1984, thankfully, we were able to use the services of Visiting Nurses (this was before Hospice was available) to give him drops of morphine while he lay in his bed, gasping for air and enduring a level of pain I can’t even imagine. It took him three days to finally die.

My mother, who died at the age of 94 in the “Comfort Care” unit of a hospital, hung on for a week with renal failure, until I finally insisted that the doctor increase her morphine dosage. A “Death with Dignity” Act would have spared both my parents painful deaths that, at that point, were inevitable anyway.

Please join me in contacting the co-chairs of the Joint Public Health Committee:  Sen. Jason Lewis (jason.lewis@masenate.gov, 617-722-1206) and Rep. Kate Hogan (kate.hogan@mahouse.gov, 617-722-2130). Urge them to pass H1194 before the deadline in early February.

For more of my musings about a better way to die, see my blog post: https://www.kalilily.net/2011/10/22/dealing-with-that-disturbing-d-word-being-a-midwife-to-the-dying/

The Dilemma of Choices

Because this blog focuses on the lives of American elder women in the last quarter of our lives I will not try to be overtly intersectional in specifically mentioning people of color, of poverty, with physical challenges, and who seek gender equality, because, in truth, “elder women in the last quarter of our lives” is intended to include all marginalized women in that age bracket. So, when I speak here, I speak from my own – somewhat privileged – experience. After all, I am white with a limited retirement income that I should be able to live within (with, granted, limited but livable choices).

Access to unlimited funds pretty much gives you unlimited choices because it eliminates one of the prime restrictions to making a choice: the money to pay for it and whatever consequences result. For 98% of us, that’s a crucial restriction, and we try to live within our means. That means we live with limited choices.

The Equal Rights Amendment did not get approved because it was not ratified by ¾ of the states. That Amendment to the Constitution would have benefited all kinds of people, but because of the options it would open for women, it remains controversial, with religious conservatives opposing it because of their pro-life stance. They continue to work toward limiting many women’s choices by demanding that we restrict ourselves to their choices.

While women, in total, make up more than half of American citizens, it is mostly men who are in power to make the laws that limit our choices. Take, for example the (thankfully unsuccessful) effort to repeal the Affordable Care Act. A wonderful recent piece by (of all things) the United Church of Christ blog covers this issue beautifully, ending with

All this new-found talk of “choices” is a mockery, a betrayal of Christian values, a scheme designed to lull the most vulnerable into supporting a health care law resulting in worse coverage for them, at greater personal expense, to the benefit of the wealthy who will continue to enjoy Cadillac care for less.

Again, this is an example of our predominantly male (and conservative) lawmakers giving us “choices” that do not really give us much choice.

Somewhere between oligarachic patriarchy and total anarchy there has to be a system that will minimize the limits of our lawful choices. “Lawful” is the key word, here. From wearing a hijab (or not) to getting an abortion (or not), these are choices we women should be able to lawfully make for ourselves. And the folks making our laws do not understand the meaning, the importance, and the social structure necessary in making choices that minimize negative personal consequences.

I am a democratic socialist, which means that I would like to see America evolve into a system of a modified form of socialism, achieved by a gradual transition by and under democratic political processes. There are responsibilities to its citizens that every democratic government has. The piece on this page written by Alok Pandey, a young man from India, says it better than anything else I came across.

He ends with this. And so will I.

If it isn’t for people, what good is it for anyway? Now when I say for people, it doesn’t necessarily means doling out freebies to poor and giving a carte blanche to the rich. Any method is good if it is consensual and is in the better interest of the people. A democratic government must seek the approval of the common masses and later should be ready to receive the feedback for its acts.

Too much or too little. Stop #6 on My Medical Marijuana Mystery Tour

While there are all kinds of articles online these days explaining how to make cannabutter and how to calculate dosage if you are going to make brownies or cookies, I like this one because it includes both descriptions as well as other helpful information.

I think that I have pretty much given up trying to make my own edibles because I can’t seem to get the dosage right. Of course. everyone is affected differently, so it’s trial and error. I also wish I could get the leaves rather than just the buds. Edibles baked with buds have a strong skunky flavor. I don’t remember that happening when you use the leaves.

So, if you are going to start trying to use Medical Marijuana for insomnia, I suggest starting with the caramel nuggets, and the most cost effective way and easiest way to use them is to cut each 50 mg nugget into four or five pieces and suck on one before you go to bed. That is what is working for me. Not all dispensaries carry a wide variety of ways to consume Medical Marijuana, although all seem to carry capsules and lozenges. I just didn’t want to swallow capsules.

Between 10 mg and 12.5 mg of Indica seems to be enough to help me fall asleep and be able to go back to sleep after I wake up to go to the bathroom. It works better than any prescription medication I have tried.

So, for now, this tour is taking a break, since this dose and product seems to be working for me. If I have any great subsequent revelations, I will post them here.

I do have to report that one night I accidentally took a double does (didn’t cut the nugget correctly) and really tripped out. The worse part was panicking because I was alone in my bedroom on the other side of the house from everyone else and felt very disoriented. Suppose I got a heart attack! I was afraid to get out of bed because I was dizzy and the walls were circling around me. I learned my lesson. All I want to do is be able to sleep; I guess I don’t like feeling that much out of control any more.

Final Note: Remember, there is a big difference between hemp oil, CBD oil, and oil made from Marijuana with THC, and this article explains it clearly. http://www.mintpressnews.com/hemp-oil-versus-cbd-oil-whats-the-difference/193962/

And this “Ultimate Guide to Cannabidiol” is a thorough examination of CBD, its history, and its benefits.