When Is Enough Enough?

I lived with my father as he slowly died in increasingly excruciating pain over years and years.  When my mother was home, she forbid him to say, “I hurt,” and she withheld his pain medication “because it made him sleep all the time.”

He slept all the time anyway, because that was the only way he could reduce his pain level.  He groaned in his sleep, though.

Unfortunately, I have inherited the disease that caused his pain: degenerative joint disease, with the added agony of degenerative disc disease.

For the past few weeks the combination of mental and physical pain has me close to the breaking point.  I can’t take opiates because they make me itch, and my skin condition makes it impossible to scratch without tearing off pieces of myself, leaving a wound that takes a month to heal.  In addition, the docs in this part of the country are so afraid of opiates that they refuse to prescribe.  So I’m stuck with using mj, which is somewhat illegal here.  But I have things to do, so I can’t use enough to really relieve the pain, because that would put me in bed.  So I’m screwed.

The psychic pain–there are no words to describe. 

Part of it is endogenous.  Part is environmental–the part of the country I’m stuck in at the moment is grey and damp, two things I can’t stand.  The sun came out for five minutes today and it was balm to my soul.  I’m out of here just as soon as my task is done.

My task is to clean my stuff out of my father’s old studio, where I lived for the last four years of his life.  It took me four days just to clear the spiders out.  Now I’m sorting  through things, making three piles: throw out, because of damage from humidity; give away, because I’m not going to use anymore; keep.

Just to to the situational depression off, Atina is not doing well.  This week her labs were worse.  Her kidneys are getting leakier.  They’re no longer holding her blood proteins in her blood.  They were leaking protein before, but her serum proteins were holding their own; now her kidneys are leaking more than her body can produce to keep up with the loss.

Today we took a short walk in the woods.  It’s been raining for weeks, and since it had stopped this morning (but is back now) I thought it would do us both good to take a walk.  But she wasn’t interested in playing in the creek, and although she carried her ball, she didn’t want to play with it.  And she simply collapsed halfway through where I wanted to go, which is only half a mile on flat ground.  I had to sit down and wait for her to recover.

Now she has fallen off the driver’s seat, which is where she normally sleeps, and is passed out on the floor where she landed.  It looks like she’s nearing the end of her sweet life.

When will my misery end?

I want to stay alive until my son finishes his Ph.D in May.  I want to see him off on the next part of his journey.

He and I have talked about what we lived through with his grandpa, and that I have the same illness, with the added fun of bipolar.  We have had the talk about what will happen when I can’t stand the pain any longer.

It’s one thing to talk about it, and another thing to live it.  I know he’ll survive.  But losing one’s mother is a terrible thing.  And living in agony is a terrible thing.

There will come a tipping point.  I keep on living for others: for my son, for my dog…should I get another dog?  Can I live that long?

In three years my income will be drastically reduced, to the point where I literally can’t live.  I guess that will be the end of the line, if it doesn’t come sooner.

Can’t Do A Thing About The @#$%^ Weather!

When last I posted, I was lamenting the fact that the weather was dashing my plans to make a quick run to Michigan and retrieve my new RV (don’t look at the price, I got one that was a demo and much MUCH cheaper, but exactly the same thing!).

As it turned out, I couldn’t have gone anyway because the flights got so snarled up due to heavy snows and ice storms that no one was flying anywhere.  Up here on my mountain, there were a few inches of snow topped with a crunchy layer of ice.  No way I could even have made it to the airport, so I canceled my flight last night.  That turned out to be the wrong thing to do, because since I never checked in for the flight, I had to pay for it even though it ended up being canceled.  Go figure.  Better than being stuck in the damn airport for who knows how long, anyway.

But never mind the flight–my most urgent issue with the weather has to do with my arthritic joints.  Every time I move my right shoulder it goes “clunk.”  Sometimes the clunk is accompanied by a grating sort of pain, and sometimes not.  I have a touch (OK, maybe more than a touch) of fear when that happens, because my dad (may he rest in peace) had similar clunks that just got worse and worse.  I’m sure that’s what will happen with mine, because so far I’m following in his arthritic footsteps.  Too bad I didn’t inherit his artistic talent and drive to make art, along with the arthritis!

Last night was a busy one as I searched for a comfortable position for my arthritic neck.  No rest for the weary.  So today I’m yawning.  I hope I’ll get some sleep tonight.

I can’t take most pain meds, as they either cause me to stop breathing or to itch.  I don’t know which is worse.  If I stopped breathing suddenly, that would make the pain go away, but from prior experience I can tell you that the road to apnea is fraught with much wheezing and gurgling.  I would probably panic and make use of the dreaded Epi-Pen, the epinephrine auto-injector with a needle the size of an elephant’s trunk. Then I’d be back at square one, except now with a large bleeding hole in my thigh.

So I’m ingesting as much turmeric as I can stomach, which does help, and slathering my homemade Frankincense Oil concoction all over my shoulder and neck.  My hair is greasy with it, but since I can’t get down my icy dirt driveway and no one can get up it either, I have no worries about being seen with straw-hair.

I am grateful that the power has stayed on, and the propane seems to be holding out.  I got a $600 delivery just before it precipitated; but then the temperatures dropped into the single digits with winds that blew off part of the roof of my shed, so I have no idea how much fuel I have left.  I’m not going out to the tank and risking busting my arse on the slippery stairs.  The salt I spread before the storm merely melted some of the snow; and it froze back up, creating a skating rink on my stairs.  Fuck it, I say.  I turned the heat down to 65 and put on another layer of silk underwear.  That’s the best, I’ve found, because it adds warmth without bulk and you can layer it without feeling like the Michelin Tire Man.

michelin

 

I’ve been using my time somewhat productively.  For some reason, even though I spend most days holed up away from the world, for the past couple of days I’ve been noticing what a horrid cluttered mess I live in. It’s actually bothering me.

Even more astonishing: I’ve been doing something about it!  Going through piles of papers–I am ashamed to say that I am finding things in my “action necessary” pile that date back to 2013…sigh…I need a personal secretary.  A volunteer, because after the RV I can’t pay anybody.

I do still have a little whisky, though, so at leastI can offer a bit of merriment in the evenings.  Alcoholics will have to make do with tea.  I have a lot of tea, ranging from strong black stuff to the delicious mint I’m sipping now.  That’s how it goes around here: tea in the daytime, whisky and smokes at night.  I’m single and I do what I want!

And now it’s time to get back to reading my mail from a couple of years ago.  Who knows, there could be a check for $50,000 hiding among the junk mail!  My luck, it would have expired, like some of the coupons and offers I’ve already unearthed.

Oh shoot, I can’t worry about that.  My neck hurts too much.  Did I show you the excellent hard shell bionic brace the spine people gave me?  No?  Maybe next time.

I can’t quite tell which hurts worse, the brace cutting into the back of my skull, or my neck without the brace.

But it looks really cool on.  That’s what I used to tell the fancy ladies who came into the Michigan Avenue high fashion boutique I worked in, the winter quarter I had to take off from undergraduate school in Chicago, to make money for tuition: “This Armani is a fabulous piece.  The rack doesn’t nearly do it justice.  It looks incredible on!”  Then once you got it on her, of course it needed the belt, the bag, the necklace, the earrings–accessorize!  That’s where you made your money, the accessories.

So I have developed an entire line of accessories to go with the Amazing Bionic Neck Brace–scarves, mostly, because that’s really all you can do with a neck brace, but since I have a vast collection of scarves and hats, it comes out looking rather…surreal, like an alien sister to the Michelin Tire Man.

Unfortunately, or perhaps fortunately, I got fired from the Michigan Avenue Boutique (right across the street from Tiffany’s!) because I couldn’t sell water in the desert, let alone high fashion when I myself owned a total of two outfits, very worn and tatty.  Now I have piles of clothes.  They are lying around in laundry baskets littering up the place.  Most of them are also falling apart. Some date from the 1980’s when I was three sizes smaller.  “Oh, maybe I’ll get back into them someday,” I think to myself.

Between you and me, I rather doubt it.  Maybe I should make a pile to take to the resale shop.  But how can I part with them, when each one holds so much history?  This is the shirt I wore when we went to the Grand Canyon.  This natty pair of slacks is the one I wore on my first date, two husbands ago.  Never mind that they only fit up to my ankles.  Now that I am eating healthy food (after I finish this bag of potato chips), it’s possible that…oh darn, I’ve ripped them!  A whole chapter of my life, gone!

I must get back to the pile of mail.

And Now For A New Idea

Faithful Readers, I have a new idea I’d like to run by you.

After my last two posts, I don’t doubt that you are saying, Oh no, what kind of awful plan has she got now???

It’s not what you might be thinking.

I’m thinking I might get an RV and have it a bit modified for people with upper body disabilities…and go RV’ing around the country till I can’t do it any more.

I hate where I’m living.  The RV I would get will have a full bathroom, which I don’t have now.  It will have a full kitchen, which I don’t have now.  It will limit the amount of JUNK I can collect….I am a professional junk collector.

I want to go exploring in my favorite part of America: the Wild and beautiful West.  Maybe even find some way to volunteer at the National Parks, so I can camp there for free!  I can’t do trail duty any more, but I can answer phones…or “woman” the Information Desk and give out maps…I’m sure the National Park Service has volunteer gigs for disabled people!

Like I have said before, I don’t intend to let this disease get me like it got my dad…but neither do I want to just sit around this dratted uncomfortable place until I freeze in mid-air like Dad did!

If I can find a way to make the rest of my life fun and fulfilling, that will mean a lot.  Yes, Dad’s life was amazing right up to the point where his disease took over his life and he couldn’t do his magical art anymore.  Then he spent five miserable years dependent on others.  That’s when my life will go bye-bye.  Not doing that, if I can help it at all.

Dad lost his life–although his body stayed painfully alive–when he was 85.  My disease is progressing about 20 years earlier than his.  And my disease is in my neck, which his never was…and thus it threatens my whole body with the spectre of quadriplegia.  Not on the menu, if I can possibly help it.

When I think about cancer, I don’t think “chemo and radiation can help you live another (fill in the blank) months, years.  I am not interested in living with poisons and burnings.  Yes, I know that many of you are Cancer Survivors, and I totally applaud your courage.

However, I do not have the drive to live that others may have.  I welcome death.  I’ve had some amazing victories in my life, for which I am intensely grateful.  But now I am faced with two terminal diseases (Bipolar and Spinal Stenosis), and my chief aim is to enjoy the life that is left to me, and to go peacefully when the time comes….please God, let me know when the time is right so I don’t miss it and end up in a nursing home for years.

So.  I told you I wasn’t going to write about THAT, but it’s on my mind, so there you have it.

An RV would provide me with comfort, mobility, and FUN!  I’m getting revved about it.

What do y’all think about that idea?

When Does Life Become Unlivable? Thinking of Frida

Dearest Readers, rest your minds, I am not there yet.

Today is rainy and soggy.  The ground is thawing out in our Spring Thaw, which is a prelude to actual Mud Season.  I grew up mostly in New England where there is a time of year called Mud Season, generally starting the end of February and going on and off through March.  It’s a beastly time because everything from horses to tractors–not to mention cars and pickup trucks–gets bogged down in the mud.  You can’t get any “purchase” (traction) because under the foot-and-a-half of mud is the frost line from the winter, which will stay frozen even into May, as any New England gravedigger will tell you.

What this weather means for me is misery.  My hands hurt.  My hips hurt.  My neck is even now packed in pillows so I don’t forget and move it.  Et cetera, ad nauseam.  Oh and my asthma is suffocating me.  Go away, damn it, and let me just LIVE!!!

I saw my orthopedist this morning for another cortisone shot into my right shoulder.  Unlike last time, when the needle slid in so easily I didn’t even feel it, he had to do quite a bit of wudging around till he was able to get the needle into the joint.  It hurt.

I remarked on this, in a casual tone, like this:  “Fuck a duck, Doc, what the hell are trying to do to me???”

Actually I did not frame it in those terms, more because I know that all 6’5″ 300 lb of him are made of good nature and kindness–he and his saintly wife have, on top of their own eight children, adopted eight more, all of them older children who needed a good home.  Even if he wasn’t on the short list for sainthood I would still try to maintain a modicum of dignity and say something more like, “Sonofabitch, Doc, that hurts!”

He grinned and mentioned casually that I am certainly going to need that shoulder operated on at some point, as the joint is proliferating with calcium deposits that will need to be “scraped off” (oh, I don’t like the sound of that!) so they don’t tear up the muscles.

Here my vision goes blank and all I can see is my father lumbering along with his elbows stuck out to the sides like a chimpanzee, because both of his shoulders had frozen up….eventually becoming bone-on-bone.  He was literally stuck, couldn’t do anything with his hands–and he was a ceramic artist.  Hell on Earth.  And it didn’t stop there.  The arthritis ate his spine, just like it’s been slowly but surely eating mine since the 1980’s.

I had emergency surgery on my neck in 1987 for a ruptured disc that was pressing on my spinal cord.  Over the next 3 years I ruptured 4 more.  The spine surgeons proposed installing steel rods on either side of mine spine–no thanks!  I’m a dancer, a horse-and-dog trainer, a hiker, an aspiring Yogini.  A rigid spine does not suit my lifestyle.  So I spent 12 months in a Minerva Jacket, which is a hard plastic shell that the brace shop guy molded directly to my Stockinet encased torso, from just below the armpits to just above the groin, so that I could kind of sit.  It had Velcro fasteners in front.  I was to be encased in this walking tomb for 23 3/4 hours a day–with 15 minutes off to bathe.  I admit that I had to take the damn thing off at night.  Nobody could sleep with that thing cutting into your skin no matter how many layers of cast padding, etc., they fixed up for me to try to make it more comfortable.  I even coaxed the brace shop guy (“You have a perfect hourglass figure…!  He crooned, while I was immobilized in plaster yet again…stupid sod, I thought, only worse) into punching hundreds of 1 cm holes in the thing when it got to be summer and I was overheating in it.

Yah.  I spent that entire year standing up 120 hours a week–my work week–because the tension on my spine from sitting down sent the nerve pain all the way into my feet, and all the way into my hands.  But I soldiered on.  I refused to let the pain stop me.  I was young, and had the iron will that sustains my people.

Look, I follow a lot of people who have it much worse than I do.  Much, much worse.  And they keep right on living, kvetching now and then as is their right.

But I am staring into the face of a dilemma, which is:  I can’t work if I can’t look down.

Say what?

I can’t work if I can’t look down.  Not at my regular streams of income, at any rate.

I had to give up practicing regular medicine, not exclusively because of my brain, which wasn’t doing so well either but got right-side-up very quickly once I got the proper diagnosis and the proper meds, but mostly because my hands gave out due to whatever it is that is eating away at my connective tissue.

So I relied upon my acupuncture training.  Palpating meridians and slipping needles into the right places takes no strength at all.  But damn it, the last few treatments I’ve done, I swear I’ve squawked as much as my client!  I can’t look down without incurring an acute, unremitting ache that spreads into my shoulders and down my arms.  Nerve pain.

Writing.  I don’t sell much yet, but then I haven’t made much of an effort.  I get going with writing and at some point my hands seize up and won’t work at all.  I am experimenting with Dragon Dictate.  It is a pain in the arse, but many people swear by it (I swear at it, cliches be damned!).  I’m starting a proofreading and copyediting business.  That should be a good income stream, if I can market it successfully.  There must be a way to mark-up copy using Dragon or something, right?  At least I can get my computer at eye level.  God, I can’t stop thinking about Frida Kalho.

Money.  At the moment I’m fine.  I made one single good investment in my life, which sustains me now.  That stream of income goes away the moment I turn 65, if I make it that far.  I’m socking away as much as I can, but one little bit of extra expense can throw me seriously in the hole.  It’s unsustainable.  I have to find another way of supporting myself.

This is where the equations meet.  I cannot live as an impoverished cripple.  Please do not play the “Oh, no, you’re going to be just fine” game.  I get that enough from people I live around.

The truth is, I am not and will not be fine.  I have two progressive diseases, and if one doesn’t kill me, the other will make my life a living hell, just as it did to my father.

Dad didn’t want to live like that either, but he got taken by surprise.  It was as if he woke up one morning mostly paralyzed.  He was too bunged up to even take his own life!  So he lived another 5 years in unrelenting pain, totally dependent on the kindness (or unkindness, as the case often was) of others.

When we were alone he would ask me, “How much would it take?”  He was referring to his insulin: how much would it take, to take him out of his misery?  I could not, would not tell him.  He would smile sadly, saying “I know you can’t tell me.”  And we would change the subject.

Gentle readers, there will come a time when those two lines intersect: the downward spiral of my health and productivity, and the linear decline of my ability to sustain myself with food, shelter, medicines, and everything else one needs.

No.  I do not want to enter a nursing facility.  Neither do I want to be dependent on others, which is convenient because there ARE no others to be dependent upon.

I do not want to be locked into a crippled body the way my father was, until he died an excruciating death, screaming out his last hours on earth through blood-filled lungs.

I pray that I will know the right moment.  I pray even more that if there is a Deity, that he/she/it will take me out of this life before I have to make that tough decision.

Pray with me now, dear readers.

Pray that I get to dance at my son’s wedding.

Pray that I get to hold my first grandchild.

Pray that I get to have a sweet, gentle kiss of Death, and go Home before I have to make that tough decision.

Frida’s last diary entry, the night before her not-entirely-accidental death, went something like this:  “I hope my end is joyful, and I hope to God never to return.”