Day 4 at 3 Milligrams

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Well, three months from now, December 14, I will be 70.

At about 4 AM, while sleeping, I felt myself become terrified.  I did not wake.  Noted the terror and returned to unconsciousness.  But woke with a strong lingering sense of terror.
Could be nerve cells working overtime from withdrawal.  This is the forth full day at a new reduction.
Weather continues strange.  A little drizzle today.  And, thank goodness, a bit cooler.
Carol says I am calmer  today.  I say I feel more “spaced-out.”  Had teeth cleaned this morning and can hardly remember it.
Heard from hygienist that my old shrink, Olga, is still alive.
Moses Malone died yesterday, at 60.  No cause of death at this time, though foul play is not indicated.
Did 1.25 hours on machines; half mile swim in about 25 minutes.  It drizzled on me as I swam.
Still reading Great Expectations…getting close to the end…

Day 3 at 3 Milligrams

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Didn’t write yesterday, Saturday.

But Friday night and last night, Saturday night, I stuck to 1 milligram at bed time, one milligram at 630 AM or so, and .5 milligrams at noon and 6 PM.
So going on 3 days with 3 milligrams, and that means trouble…usually does.  Days 3, 4, 5 are usually awful.  Tense, anxious, angry.
And last night made it worse.  Because it was cooler Carol closed windows and blinds. Mistake.
We woke at 4 way too hot, had to open windows, blinds, start to fall asleep but wake when hear baby crying next door at 5…and it went on like that from there, dozing a bit, then waking and so on.
I feel just plain mean.  No purpose, no direction, and sick of the assholes and idiots that inhabit this world.  Damn.
Yesterday had to just plain drag my ass to club.  Did 1.25 hours on machine, plus 25 minutes swimming .5 mile.
I will try for that again today, though no telling how busy pool will be.
It’s 78 degrees at nearly 12.  Might be a little cooler today though wouldn’t want to bet on it.

Day 1 at 3 milligrams

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Did drop to three milligrams last night but awkwardly.

Took one milligram at 1030 or so.  A drop of .5 milligrams, but woke at three and couldn’t get back to sleep.  So took .5 milligrams I had at bedside and went to sleep round four.
But, then, to keep it at three milligrams for the day, I had to take only .5 at seven or so, instead of my usual 1 milligram.
Anyhow so far I have kept it to three under trying conditions.
Very hot last night, so hot we had to keep open windows and blinds to get some air.  It was well over 80 at ten PM.  And very humid.
The heat, they say, will persist at least through Sunday, and then the possibility of rain.  Hard to believe…but after that persistently high temperatures 10 to 15 days out. 
Did 1.25 hours on machine, swam .5 miles in about 35 minutes.  Estimate about 800 calories used up.
Two substantial dumps.  Must remember to take probiotics, especially since I am now out of figs.
I have a bad canker sore.  Not chancre sore, since that is the beginning of syphilis.
It’s Friday so we went to Costco…for weekly shop.
Did a bit of EMDR yesterday….and am not sure if it had effect on fatigue level…hard to know with this heat.

Day 13 at 3.5 Milligrams

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Plan to drop .5 milligram tonight, getting me to 3 milligrams per day for tomorrow.

We will see.
2 90 degree days in a row. Don’t know when that last happened.
Paralyzing heat for us.
Did some EMDR.  A few minutes. Will know tomorrow if that was a mistake.
Did 1.25 hours on machines.  No swimming.  Did not want to go out in that fucking sun.
Dan called; he is happy to be getting so much unemployment.  425 per week, for up to 11,000 or so….then…who knows….

Day 26 or Day 13 at 3.5

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Did not write yesterday (9/8) or the day before (9/7).

Have felt just terrible because of the withdrawal no doubt, but also because again, for us, we are having extreme heat.  
At the moment the computer tells me it is 88 degrees.
And I went and worked out for 1.25 hours on machines, plus 25 minutes swimming (half a mile), plus jacuzzi for sore muscles, and steam bath for 10 minutes.  I am still sweating from all that.
I could hardly get out bed this morning.  It was horrible.  I did not WANT to get out of bed and that scares me.  (nothing to look forward to but 88 degrees of heat).
Tomorrow MAY be my last day at 3.5 milligrams.  Very unsure about whether I will reduce another .5.
Predictions of continued heat for at least the next three days… And as previously noted we have no AC.
See Anny tomorrow and don’t feel I should do any EMDR what with general aches, pains, depression of withdrawal.
Half way through Great Expectations.

Day 23 at 3.5 Milligrams

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Well, I missed this last Thursday, Friday, Saturday.

Today is Sunday, Sept. 6.
Day 23 at the 3.5.  Actually that’s off.  It’s ten days since I dropped to 3.5.
It’s been rough, and looks rougher coming up.  Most of the next ten days are predicted to be over 80 degrees, and we will have three days in a row at 85.  That heat–perhaps the highest level of heat recorded in Goleta–mixed with the withdrawal makes me feel completely gutted.
I feel like throwing in the towel.

Day 20 at 3.5 Milligrams

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I don’t know what to do about how just completely miserable and useless I feel immediately upon waking up.  Well, not immediately.  The feelings of dread, anxiety, and just plain fear seem to start round 6:30 AM.  I toss and turn with them for an hour and a half or so, sometimes dozing, and get out of bed with this horrible weight on my chest and feeling that I really don’t know how I can go on living like this.  The rhythm of the thing, or rather the regularity of the rhythm-  that there is a rhythm makes me think it is a drug thing, or my general depression compounded by a drug thing.

In any case, it’s a just, plain, awful way to start the day.  With fear of death, death woes, regrets, sense of failure, and no expectation at all of anything pleasurable in my day, just something to be endured.  If that….
After about two hours, I sort of begin to crawl into the routine, sort of an extension, these movements, of my originally having put on clothes to get out of bed.  I move steadily into the social realm…I guess you could call it, and away from the psychological.  The psychological is still there,  like the start of a headache, but not so powerful that the idea of vacuuming the carpet appears utterly ridiculous.  So I vacuum the carpet…
But this was a tough one.  And I dread another tomorrow morning.  This is almost all of day five since my last reduction….or is that six….
Did an hour and 15 of aerobic, 25 minutes swimming.
Still reading great expectations….
And the headline in the LA Times was about an Olympics possibly to be held in LA in 2024,
2024?  Who knows if I will live to see that.

Day 19 at 3.5 Milligrams

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Missed yesterday (Monday, August 31); and today is the first day of September.

Yesterday was predictably bad…days 3, 4, 5 after a reduction are usually bad.
The temperature has thankfully dropped.  Much more manageable high 70’s today.
1.25 hours of aerobic, plus 20 minutes of swimming.
Bowels quite regular lately.  Gas not as extreme as not so long ago.
Sleep?  Doesn’t feel like sleep, and then I wake up around two or something like that.  And toss and turn. 
Had bad dreams of the high-anxiety type.
And found myself imagining what it will be like to be on my deathbed in the not very distant future?  This came to me in that vulnerable twilight between sleep and waking.  A really miserable thing to be imaging upon waking.
Carol is getting ready for new school year.  Brother Dave must be near the border of Washington now.  Am afraid to contact brother Dan who is looking for work.
Managed to drag my ass to store, did some cleaning, straightening round house.  Phoned Carbonite again about backup.  Also cancelled incorrect appointment for toe nail cutting (???).
Carried carcass of old computer to garage yesterday, and saw headline, “Suffering Makes Young Person Wiser” or something like that–about Skipper who died of cancer clear back in the late 50’s.  Wish I hadn’t seen that.  A write up in the Daily Nixon.

Day 17 at 3.5 Milligrams

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Very tired.

But did manage to remember, last night, to take the reduced
dose: 1.5 milligrams of V.

But yesterday evening, it was 85 degrees in the condo at 11
PM.  This has not happened in a long,
long time. 

So we slept with the windows open, the blinds too.  I don’t remember us in fact ever having done
this before.  When I woke at one point, I
saw “rosy-fingered” dawn.

We also kept on fan like device we bought from Dyson.  Carol says she could not have slept without
it.

Lower temperatures are predicted for tomorrow, Monday.

Went to club; worked out on aerobic for 1.5 hours to the
tune of almost 800 calories.  Still,
having dropped two pounds, from the NY trip, I can drop no more and remain
stuck around 170.

Did not swim.  The
pool is almost tepid, perhaps from heat, perhaps to keep it warmer for
children, who have been kicked out their pool as the water is re-filtered (to
little or no effect, if the big pool is any indication).

Tomorrow is Monday.  I
always find Monday hard.  I am supposed
to be working, but I am not.  And Monday,
start of the work week, reminds me of that.

This drug thing, along with the aging thing, along with
adjusting to the retirement thing–well, it’s all a bit of a bit too much all at
once.

Day 16 at 3.5 Milligrams….

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Not quite.

I missed yesterday.  That was a Friday.  Thursday night I did drop to 3.5 milligrams.  I felt OK through the morning hours.  A little manic maybe.  I slept mostly through the night.  But after noon things turned dark and miserable all of a sudden.
Then last night, I forgot to reduce to the nightly dose to 1.5; instead took the regular 2.  But made up for that by cutting the 6 AM 1 milligram to .5 milligrams.  I have passed consequently a pretty fucking miserable day. 
The drug thing being no doubt worsened by what for us in great heat.  92 degrees at this minute, the fourth day of great heat, and we of course have no air conditioning.
I slept miserably, if, that is, I can call it sleep.
I will go back to a 1.5 milligram nightly dose, having cut up all the pills in preparation for the coming days.  Lest I forget.
Right now my head aches, my neck aches.  This morning I had body aches.
Did an hour and fifteen on aerobic machines, plus 20 minutes swimming in a unpleasantly warm pool.  
Brother Dave is now more than half way though Oregon.
I think the file download, via Carbonite, has been successful…more or less.

Day 14 at 4 Milligrams, 2/27

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Tonight would be the night, following my two week plan of reduction, to drop another .5 milligram of V.  But I am not so sure.  My head feels like lead.

I woke at three last night and didn’t really get back to sleep till 5.  It was very hot and I was aching in many places: thigh, calves, lower back, and hip joints.  I kept tossing and turning trying to find a place where things didn’t hurt quite so much. Finally  had to get up and take an Advil, was off to sleep in about 20 minutes, only to wake 20 minutes later feeling very cold and unable to locate blanket.
Woke feeling sort of sick inside
Saw psychotherapist.  Talked about a number of things–the way, for example, I used reading (and writing) as a round about way to access my “self,” more or less. Given that more direct access was blocked by disassociation (due to my have been mostly terrorized by my father and humiliated by my mother).
Psychotherapist emailed this to me for my contemplaltion:

HONESTY

is reached through the doorway of grief and loss. Where we cannot go in our mind, our memory, or our body is where we cannot be straight with another, with the world, or with our self. The fear of loss, in one form or another, is the motivator behind all conscious and unconscious dishonesties: all of us are afraid of loss, in all its forms, all of us, at times, are haunted or overwhelmed by the possibility of a disappearance, and all of us therefore, are one short step away from dishonesty. Every human being dwells intimately close to a door of revelation they are afraid to pass through. Honesty lies in understanding our close and necessary relationship with not wanting to hear the truth.

The ability to speak the truth is as much the ability to describe what it is like to stand in trepidation at this door, as it is to actually go through it and become that beautifully honest spiritual warrior, equal to all circumstances, we would like to become. Honesty is not the revealing of some foundational truth that gives us power over life or another or even the self, but a robust incarnation into the unknown unfolding vulnerability of existence, where we acknowledge how powerless we feel, how little we actually know, how afraid we are of not knowing and how astonished we are by the generous measure of loss that is conferred upon even the most average life.

Honesty is grounded in humility and indeed in humiliation, and in admitting exactly where we are powerless. Honesty is not found in revealing the truth, but in understanding how deeply afraid of it we are. To become honest is in effect to become fully and robustly incarnated into powerlessness. Honesty allows us to live with not knowing. We do not know the full story, we do not know where we are in the story; we do not know who is at fault or who will carry the blame in the end. Honesty is not a weapon to keep loss and heartbreak at bay, honesty is the outer diagnostic of our ability to come to ground in reality, the hardest attainable ground of all, the place where we actually dwell, the living, breathing frontier where there is no realistic choice between gain or loss.

I suppose this makes sense.  But writing something like this would require more sincerity than I could ever muster.  I incline towards irony.  Bruce Springstein is very sincere; Bob Dylan never was.  He has always been a huckster and a trickster.  Watching him in his early 20’s singing Mister Tambourine Man, I can see he is ready to bust out laughing, as in, “Are you suckers buying this shit salad?”

Day 13 at 4 milligrams

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Felt miserable yesterday; sodden, sluggish, and sullen.

I have been miserable with Carol, constantly critical.
Were I to write something longer on withdrawal, I would need to include a chapter on how it affects personal relationships and one’s need for them.
Carol insists that nobody could or should go through something like this alone.
Slept mostly through the night but woke feeling much like yesterday.
Really concerned about whether I should drop another point .5 tomorrow night.  Though, as previously indicated, I don’t know how I could feel much worse than I do right now. Still, I suppose I could surprise myself.  With, yet, another lower level of misery.
God I ache when I get up.  It seems to wear off some with moving about.
Quite hot yesterday.  Did an hour and half on machines.  Pool closed.
Computer stuff sucks.  Phoned Carbonite and got some help.

8/25–day 12 at 4 milligrams

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Missed writing yesterday.

A bad day overall, and today is worse.
I slept nearly the entire night, till 6:30 at least, and still got up exhausted, defeated and morose.
Noise lately is driving me crazy: the beep-beep sounds from construction across the way, and this morning: grinding noises from tree trimmers out on the former golf course.  Many trees are dying from the drought.
Teague called to let me know he got my email a week or so back because I had called him yesterday morning to see if he got it.  And this  morning I woke feeling bad, that maybe he felt impatient with me, when, as he said in the phone called, my email didn’t really seem to need a reply. With which, I agreed, but had just wanted to make sure he got it (my having never sent an email to him before).  Strange the power doctors have.  As if they had insight into anything.  But I missed a couple things he said because I had just woken from a nap and my left ear is all stopped up.
So I woke aggravated about that.  Seems as if lately I feel I am just boring people, and it’s time for me to get over this shit.  Or maybe to really get over it and just plain die.  In not being I would at least cease to be boring.
At our last session, I caught Anny yawning.  I used to think I was at least a little interesting. No more.
Had a stupid argument with Carol.  She wanted me to make her a peanut butter sandwich since she was running late as usual.  But she wanted me to wash my hands before I did it, and as I was about to do that, she said I should was my hands for the length it took me to sing the happy birthday song to myself, and I said, screw it, she could make her own sandwich and stomped off.  I mean we have gone over and over about this microbe thing.  I mean what the fuck could she catch from me?  If our microbes aren’t used to each other after 35 years…..
The stock market took a dive, but seems to be bouncing back this morning.
The pool is closed at the club.  They are processing the water for yearly cleanup.  I did machines for about 1.5 hours and then some stretching.  Close to 700 calories overall.
The house is a fucking mess.  The shelves in the garage are about to collapse from all the crap.  I still can’t get the water out of the jacuzzi.  The deck still needs to be refinished, and I don’t care.  Since I will be dead soon anyway…why bother to clean up….just let it pile up..and then make your exit.
Jerry at the club is dying.  He has a bleeder and the operation to fix it could kill him.  Or the bleeder could kill him.  He and his wife have a decision to make.  He is 90.
What’s a Hobson’s choice?  I think this may be one.

8/23–4 milligrams–day 10

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Woke feeling awful.

Took thyroid before v.  At the wrong time, in other words.  While taking v. at 630 tends to give me an hour more solid rest.  V. at 730 makes me groggy in the morning.
Also more than usual death stuff and creepy feelings about other people, and thoughts of death, as well as….how long a past I now have..Not much to look forward to…
But Carol reminded me that in the last cycle of a drop in dose I felt this way…pretty hopeless–around 10 days out from the reduction.  At this point last time, I wasn’t sure I could make a reduction.  Let’s see: I have M, Tu, Wed, and Thurs before I drop again.  Perhaps I will feel better by then.
Had a dream with some violence, though can’t remember details.  But I thrashed about a bit in the sheets.
Also I just ached a lot.  The whole morning it seemed as I moved about I was constantly muttering shit! or fuck!  It’s as if the withdrawal magnifies every ache or pain, and my whole body wants to convulse or something.  Like when you stub your toe and your whole body seizes up for a second or two….
Aches in the buttocks and legs primarily.
My computer is taking forever (three days, it says) to restore my files from the old busted computer….
So what…I am in no rush

8/22

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Been a week and 2 days since last reduced v. by .5 milligrams.

As with last reduction things get worse, though in a different way, as days go by.
Woke three nights in a row around or just before five.  On two occasions was awake for some time; last night went rapidly back to sleep.  But woke in a bleak and agitated frame of mind.
This has continued all day.
Bad dreams, about dead brother Steve, two nights ago.
Am very, very tired and struggle to convince myself it’s the drug reduction and not simply, merely, and inevitably the onset of old age.  So far I am not convincing myself.
Two days ago the computer I had for five years just crapped out.  So after some consideration went to Best Buy and got a Dell for 299.  It’s  got plenty of power for the little I need to do and should last maybe three years. 
Hell, I might not last that long.
Oh, lots of pains and body aches today, and bumping into things again.

resume entries?

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Long time since I wrote here.

My last entry was dated Nov. 14, 2014.  Steve died the next day and I stopped making entries.
Now it’s August 19, 2015.
I have been off klonipin since Jan. 2015, but to do that had to switch to valium.
I am now getting off that and I wrote an email to Teague–he asked for updates–about valium withdrawal.  Carol read the email to her shrink, and she said maybe I had a book here about withdrawal.  So that got me to thinking about writing again, though I didn’t think the email was that good.
I am now down to 4 milligrams of v. per day.  At this stage of the game one withdraws only .5 milligrams at a time.  So I still have months to go to get off this stuff, and it becomes tougher the closer one gets to the end.  Common wisdom, for example, says when one reaches 5 milligrams one should start dropping only .5 every two weeks or so;  before that I was dropping (down from 12 milligrams of v.) one milligram every two weeks or so.  Though, there were interruptions.
Steve’s death threw me off course, and this summer C and I spent a month in New York.  I did no reductions during that time.
Here is the email I sent to Teague:

Hi Dr. Teague:

 

I believe I saw you last, Friday, July 31.

 

The night before that visit I had dropped my valium dose  by .5 milligrams, making my dose for the day 4.5 milligrams.  2.5 milligrams upon retiring, 1 milligram round 6 AM; .5 milligrams at noon, and another .5 at 6 PM.

 

I stayed at this level for two weeks, until Thursday, July 13.  Those two weeks were pretty rough; most significantly at the start of the second week I had three nights running of nightmares.  I call them nightmares because, while most of my dreams are anxiety sodden, these had elements of violence not usual in my dreams.  The details of these dreams now elude me, though I remember in one pounding my father up aside the head because he refused to tell me something I wanted to know.

 

I have now (Monday, July 17) been on 4 milligrams.  I lowered the nighttime dose from 2.5 to 2.  I was surprised at how quickly my sleep suffered, though the whole sleep thing has been I know aggravated by the heat of recent days. 

 

Yesterday, in my third full day on the new dose, I was pretty miserable.  My nose kept running; I ached in multiple places (calves and buttocks most especially), and had trouble with body boundaries.  I stubbed my toes twice, caught my fingers in closet door, and bumped my head on a towel rack, when rising from the toilet.  In general, re that area, my gut is not great.  Oh, we took your advice and now ingest daily fresh probiotics (the kind you keep in the frig).

 

This morning I woke with thoughts of degeneration, decay and death.  Not a good way to start the day at all.  Terror mixed with despair.  Took me a while to get moving.

 

I will stay at this level until Thursday, August 27, and then I will drop another .5 milligram from the nighttime dose.  Unless of course things get worse than they are at the moment.  Then I will reconsider.

 

Meanwhile, I keep up my daily routine.  Breakfast, morning ablutions, chores, and cleaning in the morning; exercise in the afternoon, and nearly complete collapse after dinner  Thank god for Roku; at least we can locate some relatively good TV.

 

I am concluding Stendhal’s The Red and the Black, as part of a project to re-read books I could not possibly have understood at the time I first read them (given my ignorance and maturity level).  The Red and the Black was one of those.

 

I was sorry to see that Julian Bond died yesterday.

 

Best to you.

 

Nick (and Carol)

 

I have no idea what might be useful or not in a book about drug withdrawal. What would help other people?  Maybe just a friendly voice from some one who has gone through it, along with a little practical advice, examples of how to go about tapering, and some stuff to get a sense of my life situation.  That might undercut the more authoritative (do this) stuff; on the other hand the authoritative do this stuff is undercut by a lack of context from the speaker. Unless the speaker is a doctor, or scientist and not some regular dude

76

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Yet another day like the one before.

As Carol and I analyze the situation S. has had no nourishment since Wednesday.  At least B has not mentioned any.
Called DA who was in Louisiana; the weather is not so good and he will not get to Clinton till Saturday.
Tomorrow, I will do my best to stop this cigarette thing.
I slept poorly.
I called Dan and talked with him for a while and also with our good neighbor, the former nurse.
Beyond that I am pretty much overcome with Steve’s situation.
Oh, I called hospice about free grief counseling.  They may have a spot in a week and a half or so.  Maybe DJ will come with me.
Did 20 on recumbent; 30 on elliptical;plus .5 mile swim.

75

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Today, much like yesterday though I woke with a much bleaker feeling.

Still, I did the phone thing again. Called DA on the road; he was thinking we might pay for S’s cremation.  I called the mortuary in Laurens about that.  Then called B and told him about my conversation with DA and let him know of our offer.  B’s voice was strong and it turned out that Reverend Roper was there with him.
B just posted:
Sam Roper came and prayed with us today. Steve Steve Tingle is on continuous care from the Hospice staff and is sleeping peacefully but running a fever that won’t break. He is a fighter, but they say he is probably not long for this world, and we all pray he has a peaceful transition to the next.

Saw therapist.  I think it was useful to talk through and about the week.  No deeper emotional insight.  Possibly because I am at some level completely exhausted.  Will call local hospice care about grief counseling and me and Dan too, who keeps crying and crying.

Did 20 on recumbent; 30 on elliptical, and .5 mile swim.

74

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I failed to write yesterday (October 13).

More or less here is what happened:  more news of S. came in, all negative.  He is refusing food and his medications.  He is I believe now on morphine drip.
I can’t remember all that I did.
But I stayed active on the phone.  I called DA on the road.  I call his wife and spoke with her for quite a while.  I called Dan, of course.
Oh, and I called S., S’s former wife, and we had a good conversation about S. about her feelings about S.  That was good.
Then I went to club.
Did 20 on recumbent, 30 on elliptical, and .5 mile swim.

73

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Day did not start out as dark as yesterday.  Felt a bit better.

But news of S keeps pouring in.  They are moving him, soon, to a dedicated hospice facility.
At the moment, the refuses to open his mouth for meds or foods.  They will of course need to do something for the pain.  At the hospice place they can stick an IV in him.
Spoke with T. on phone for some time.  Amazing DA is getting in his van tomorrow and driving back to SC. He should be there by Friday to help B. move stuff out of the Langston House and assist in any way he can. He plans to stay back there, I think, as long as it takes. Which is to say, until S. dies.
T. cannot go with Dave because of attack of diverticulitis
In this situation, I am in no mood and do not have the will to mess further with medication withdrawal.
Did 20 on the recumbent; 30 on elliptical, plus .5 mile swim.

72

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A dark dark day.  Nasty feelings that were like a weight on my chest all day long.

Received the following from B:
They are discontinuing all drugs that are not comfort (pain, antisezuire, decadrone). Adding trazadone patch for congestion, oxygen has been ordered. They are getting some pink cotton swabs so we can keep his mouth wet when he breaths though his mouth. They will get some ensure. He might only have a week or two left.

M. said that sometimes, when a patient gets the pain under control, and they are able to rest, that triggers the start of a rapid decline.

I feel for S. and am terrified for myself with 69 looming just around the corner. The end for me too is not that very far off. I want to make the best I can of the rest of my time, but this is very difficult struggling with depression and fatigue. The result both of the existential situation and this transition off the terrible drug. Makes me wonder why I am doing it.

Also now that I am smoking two or three cigarettes a day for nearly a week I will have to go through the agony of nicotine withdrawal again..

While it was good, Carol is exhausted I think from her trip.

Trazadone? For congestion. I took that at one time for depression and to help with sleep.

Did 30 on elliptical, 20 on recumbent, plus .5 mile swim.

DA walks nine miles a day.

71

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Online today for our Sunday meeting, S did not speak.  He was mostly asleep though he moaned deeply a number of times clearly in pain.  They  have doubled the oxycotin.  That may be knocking him out or his condition has worsened.  It’s hard to tell.

We talked for an hour and a half, not about much, but serving at least to give B some company for a while.
I am inwardly in shreds.
I will not be changing the med dose any time soon.
Carol is back.  She had a good trip.
Shel, at the club, told me some stories about his brutally awful father.
For god’s sake, who would beat a child?
I did 20 on recumbent, 30 on elliptical, and swam .5 miles.
Smoked three cigarettes. Will stop all that tomorrow.

70

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Long hard day.

B. sent this about S>
Spent 4 hours outside between lunch and dinner yesterday. Dad seemed like he was just waking up when I left around 8pm (he was mostly awake but had his eyes mostly closed and seemed uncomphortable, but after dinner his eyes were wide open and he seemed alert). Dad’s pain meds went from 5mg 3 times per day to 10mg 3 times per day starting last night. He was pretty much passed out with a fork in his hand when I got in at 8:45am. They woke him up around noon for meds, and he moved the fork to his mouth and ate the bite of sausage and fell back asleep. I went to the restroom and when I got back they were giving him lunch; he ate a bite and feel back asleep. I read that sometimes sleeping patterns will reverse. Been having them leave notes for third shift last night and tonight to see if he is sleeping at night (he does not know) but I might have to get there before they leave at 6am or call over there before 6 to find out. Decided to run some errands since he was so out of it. (Not sure if he is just sedated from the change in pain meds, and/or if he is able to sleep now because of lack of pain) I’ll go back over around dinner time.

Obviously S’s time is running out. I am exhausted and incredibly gloomy. For the time being my mind is not on the drug issue, though the drug issue is no doubt effecting my mind.

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This will be quick.

Woke still in a slightly better mood than Wednesday…that was the pits.
Earlier in the day I felt more alert, as the day has worn on I have felt deeper and deeper anxiety.
Relatives now are posting pictures of Steve, digging up new and old ones.  Among us we are sensing the inevitable.
I posted this classic:
tingles70s_gif.jpg
This was from the seventies.  Part of the terror of this is acknowledging the passage of time, something you must do when you are remembering…way back then.
Will probably smoke three cigarettes today.
Did 20 on recumbent; 30 on elliptical; .5 mile swim.
I am very, very, very tired.

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Woke, thank god, feeling an iota or two better than yesterday, though I slept terribly.

I am worried that my slightly increased intellectual alertness is related to my new nicotine intake.  Can two cigarettes a day, do that.
Whatever the case, the anxiety was not as intense.
Went to psychotherapist and concluded that current issues deal with communication and isolation.
I remembered how in first grade they would test me on the spelling test for the next day at school.  Both of them.  J with B are her side holding a ruler.  They say the word.  If I did not spell it correctly; they would spell it.  They would say the word again, and i I didn’t spell it correctly, WB would hit me in the palm with the ruler.  This went on for ages it seemed.  But I think it may have been in first grade only.
What shit.
May account for some the issues I have had over the years with spelling.
Did 30 on elliptical, 20 on recumbent, and .5 mile swim.
Carol, though tired, is having a good time at the conference.
The painters are still at it…not right now, but today and again for several more days.

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A horrible day.

Woke in terrible mood.  Did not want Carol to go to Chicago and told her so.  But pulled back after about a hour of being awake and my head cleared slightly.  And said, OK.  And went and picked up the student who was flying with her and took her to airport, and came back to condo to find painters (each one Hispanic) swarming all over the place.  The cat was freaked out, as was I.
I bought some cigarettes and smoked 2.  I can’t believe it.  But my anxiety level is pretty much off the scale.  What’s that saying: my stomach is in my mouth.  Or is it your heart is in your mouth.  I don’t know and that bothers me.
Brian posted again about S:
He likes to have his comb at all times, when he is awake he is brushing his hair because it feels good. He calls it his “central head scratcher”. The remote for the bed is the “bed grinder”. He was only up in the chair for a couple of hours today because he kept leaning sideways. The hair dresser came and give him a beard trim in bed. His whiskers were getting in the way of eating. He didn’t eat much today, but had a lot of juice and ginger ale. Half an hour ago he thought it was 5:30 in the morning and the tv was on and he is afraid of disturbing the neighbors, but the tv was off and the radio app is turned down pretty low playing classic rock.

Breaks my heart.

Did twenty on recumbent, 30 on elliptical, and .5 mile swim.

stevechair.jpg

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Woke feeling possibly an iota better than yesterday.  But when I went to get it, the paper was not there.  That’s the third time now in a couple of months.  My stomach clinches up.  No paper.

So I use Carol’s ipad to find the LA Sports; exactly when I open the page, an instant message appears from B that reads:
Was talking to Marilyn (the hospice nurse in charge of his health care) and she said that Steve has defiantly started the “pre-active” stage of the dying process (google it). He won’t complain of pain to her or the doctor, but he told me the other day his headaches are worse, he has been having more pain in his legs and abdomen, and his nurse’s aid joni and I have both noticed the look of pain on his face and he groaned in pain the other day when I was adjusting his chair (it hurt to lay flat). Discussing this with the nurse, we decided to ask the Dr. to increase the pain medication; which has not been altered since 1/24/14 (5mg oxycodone 3 times per day, which she says is almost the minimum they give). The Dr. was just randomly here at dinner last night and Dad asked him for something to sleep, which will start tonight. He got a shower yesterday, and we sat outside in the afternoon for a couple of hours. He can’t work the iPad anymore, so I’ve been playing the radio app for him and helping him review the facebook feed and showing him the weather page he likes to look at.

Already in a super shitty mood, this message pretty much kicked the shit out of my day. All I have been able to think about is that S is in “the pre-active stage” of dying. So yea I googled it and unbelievable I found numerous uses of that absolutely idiotic and offensive expression. What the fuck could possibly be the pre-active stage of dying. Must be hospice-speak, which makes me think they too are all deranged people, no more worthy of their charges than a any bum on the street. Who would use such a mind polluting phrase.

What the fuck could be active or pre active about dying. What about simply the early stage and the last stage. So S is in the early stages; according to hosspeak this can last two weeks, with the obvious and obligatory proviso that of course everybody be different. Then comes the last stage, that may last from two to three days, depending, of course, on the individual.

All day long, even when I was swimming, I kept thinking “pre-active stage of dying.” What the fuck is that. Who the fuck could have come up with such a woolly, mush brained expression. Must have been a committee.

A truly horrible day. And tomorrow C leaves for Chicago till Sunday. So I will be alone in this hole thinking about the pre active stage of dying.

Did 20 on the recumbent; 30 on elliptical; and .5 mile swim.

Tonight will take a full 8 milligrams of Valium.

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Really bad, bad day.

Was never able to shake, even during exercise, this horrible dread, fear feeling.  Could be just withdrawal compounded with the sense that S may die at any moment.  And his imminent death makes me worry of course about my not so far off demise.  Worry is not the right word….”concentrate upon” perhaps or “resolve to keep in mind” or something.  Not quite worry.
Worry I reserve for the pain that may attend the end.  This is something else.  And that, pain, really is something to worry about.
S has said he wants to die…now…asap…but he can’t.  His heart is very strong.  But his right arm is about the only part of his body he can now control.
But I did 20 on the recumbent, 30 on elliptical; .5 mile swim.
This is not going well.  I may, per C’s advise, increase Valium by .50 milligrams.

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This entry, 64, was supposed to be written yesterday, Nov. 2, but I missed it.  So this is the Nov. 2 entry written on Nov. 3.

My decision to drop down a whole tablespoon in what remains of my eight tablespoons of clonazepam might have been a mistake.  I did up the Valium to 7 milligrams.  But I have been in pretty bad shape since.
Saturday was the terrible C is unfaithful day, and in the online session with brothers I really could do nothing but sit there and grin occasionally, mostly trying not to be rude, as they talked on about this and that and I am eyeballing S’s corner of the screen where he is slowly dying. As DJ said today, most likely we would not have seen S at all if B. were not back there to help him out.  D. said he was making a plane reservation back there for Jan. 5 but DJ and I feel S may not make it that long.
I cannot think straight.  The withdrawal is killing me, there are people crawling all over my shelter, repairing and painting, and scraping and running machines, S is dying.  And they went and changed the clocks with that fucking daylight savings time thing. Every year that change kicks me in the nuts for a week, and to really top it off, C. is leaving for Chicago on Wednesday morning.
Still I made it to the club.  Did 20 on recumbent; 30 on elliptical, and .5 mile swim.  But the exercise, while it mitigated, did not get rid of my low grade foul mood (as it usually does).

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Extra bad day.  Feel almost as if I messed up with meds; left something out, or put something extra in.

Woke at 3 am from garbled dream dealing with school, teaching, betrayal, being used like a stooge.  Lord knows what.
I didn’t get back to sleep till 430 and then only intermittently.
Felt/feel very strange.  Accused C of having an affair with this guy she meets at conferences.  I have done this before jokingly.  But this time I was not joking, and have spent most of the rest of this day wondering about the issue.  Why I am in such a crappy mood and why should my crappy mood be focusing on this particular issue.  I am not feeling any particular return of libido…so I don’t get it.
And part of me is so fucking tired, I just don’t care.
I think I messed up with the meds.
Did nothing much in the morning.
20 minutes on recumbent; 30 on elliptical; .5 mile swim.
Guess I will continue with current regimen; those my feelings today are not much of a recommendation.