My Sanity Needed Vents

[Gwenivere]

1 hour ago, KarenK said:

Then I discovered I had unintentionally placed a happy photo of each of them next to the sad ones.

Wow, I read this and wonder how you do the after pictures.  One of the very first things I did was get rid of every picture of Steve during his last 2 years when the cancer treatments had so changed his body. Even ones with his buddies at gigs. I never want to see that again.  Wish I could from my mind.  I only have pictures of him as the man he was.  It was the death hovering around him that stirs up.

[Gwenivere]

5 hours ago, Kieron said:

Maybe it's just as well.

I’m so sorry, Kieron.  Steve set passcodes on his phone and computers he was unable to convey to me in his last weeks.  When I realized I needed them, he was too far gone.  Lost a lot as you have.  I don’t know if it helps, but going into my 7th year and you close in to your 5th, I’ve found I don’t feel much need for what I wanted. It tore me up the first couple of years.  But I hadn’t really achieved acceptance.  Now I have 100% and found what I do have (except him of course) is enough and I protect it like mother bear. 

[kayc]

I made cards 35 years, all modes/mediums, I could see a card in anything!  Dry lint, basket liner from a restaurant, leaves, sand, anything!  And I loved it.  I miss that creativity.  If ever my damaged nerves heal...it's only been a couple of years, who knows?!  Meanwhile it's all encased in dust, another thing I cannot bear to look at, I never thought of it before but I grieve my ability to use my creativity...

Marty, I can imagine your letdown, thinking it was there all the time.  I have VHS tapes that need converted but haven't found a local (within 60 miles) place to do it, still hanging onto them, one never knows.  One has a short clip of George and I on Christmas...I have a photo of it, not a good photo of me but you can feel/see how happy we are together.  

[kayc]

16 hours ago, Gwenivere said:

what I do have (except him of course) is enough and I protect it like mother bear.

[Gwenivere]

Things are going downhill in rehab.  My pain levels have shot back up to level 10.  I had to have help getting up while I screamed.  This so much more intense this time around.  I don’t like how much opiates I take now.  I don’t know how this got messed up.  Even sitting in bed I can’t get away from it.  I got a shower and that feels so good after 2 weeks.  I opted out of OT but did do some PT.  
 

I am very into researching meds I am given.  I’m concerned that taking opiates a long time will put me into a need for withdrawal situation.  No doubt I need them now for whatever is going on.  Wednesday will be 2 weeks since the surgery.  Every article I read says I should be off them by now or rarely need them.  I’m also being reminded surgery was more intense, been worn down and changed facilities which is intense.  I want this monitored to not lead to withdrawal which I read happens, docs dropping the ball and no taper.  They push them and leave it at that.  I guess we all expect more from ourselves or hate seeing more limited, short term or forever.

I’ve been noticing that about 8/9pm I hit a big blues zone.  Wasn’t as bad at home.  I had my comforts and stuff I could watch that I liked when I wanted.  It’s going to be weeks here settling and I can’t pause or replay anything.  Plus my wine.  No opiates messing up my head.  
 

GEEZ!  They screwed up my anxiety meds AGAIN!  Totally took out an anxiety dose leaving a 9 hour gap.  I asked for one dose change and told yes, not that another dose time was deleted!  So after the fun of being in so much pain yesterday morning and possibly again today (so much for going to bed with enough stress),I get to fight this.  I gotta get this nailed down as I’m going to be here for weeks.  I’m so fed up on anxiety disorders seem to be downgraded when the meds are so important.  They wouldn’t do this to a someone with seizures or migraines and you can’t see those either, yet they are taken seriously.  I don’t usually wish anything bad on anyone, but I do this on those doing this crap for a few days and then tell me it’s live able.  Guess if you don’t mind being home bound or afraid for no reason going out.

OK, I guess this was a sanity needed RANT! 
 

❤️ To you all.
 

 

[kayc]

I am so sorry you are dealing with incompetence on top of all the pain you're going through!  And that IS what it boils down to!  How hard is it to NOT screw up one's meds!  And then to not fix it when it's called to their attention?!  No excuse.  They're messing with someone's life and well-being!  I know, misnomer.  Not sure what to call it.

I only hope today goes better for you.

[V. R.]

Dear Gwen, we practically live on different sides of the world,but if I lived near you, (and without these covid restrictions), I would come and visit you and give you a big hug.

Enza

[Gwenivere]

On 1/18/2022 at 6:03 AM, kayc said:

They're messing with someone's life and well-being!  I know, misnomer.  Not sure what to call it.

Too many cooks in the kitchen.  I finally had a sit down with the CNA who orders everything.  I think it’s finally right and workable.right! 

Thank you, Enza.  If I ever needed one, it’s right now.  💕. You, too, Kay.  One of my therapists always asks if I want a hug.  I never turn it down, even if I’ve had a frustrating session with her.  In this day, someone who isn’t afraid of touch is an rarity.  I’ve been missing Dee’s hugs.  She’s not even a hugger normally, but it’s part of us.  

I’ve been trying to deal with pain that is beyond anything I’ve ever felt.  I have 2 voices coming at me.  One is what the docs have been engrained with regarding pain meds and addiction.  The other is a logical way to see this.  The people here, my cousin  and my grief, counselor said you have to get ahead of the pain and stay there to get recovered. My surgeon's nurse drones out that I’ll become an addict.  So I let myself get into high pain before asking for more meds.  The rehab people tell me not to worry as they will be monitoring.  

 

 

 

 

 

 

 

 

[Kieron]

5 hours ago, Gwenivere said:

My surgeon's nurse drones out that I’ll become an addict.

Let her (or him for that matter) live with pain and I guarantee s/he'll be singing a different tune.  That's thing thing about "professionals" who have never actually dealt with pain, surgery, suffering, mental illness, depression, whatever... it's all academic to them.  It means nothing until it happens to them or someone they love.  THEN the light dawns, but only after they have made patronizing comments and given out stern lectures to their patients.

In my job I run into these babies who have degrees out the wazoo, i.e. bachelors degrees and masters degrees, and whatever else, and they haven't an ounce of common sense or empathy for what their target population actually lives with or experiences.  It's all book learning.  🙄 

[Gwenivere]

Took 40 minutes to get help after getting up.  So my med schedule was off right away.  Amazingly I got a decent amount of sleep.  Had to get up once but got back in bed and went back to sleep.  
 

I hope that continues as this was the first morning I didn’t feel so defeated for the day. It’s pain meds that make me feel out of it.  Put my home lounge clothes on.  But  I’ve also fallen into an apathetic funk.  
 

Had a 'health conference' and that was weird.  I’m not even sure who each of the 3 women were or representing.  I asked but the answer was not clear.  I complained about how inconsistent getting my medications was.  Was told emergencies come up and I understand that.  But my noon meds came at 1pm and the dispensing nurse said she went to lunch from 12:30 to. 1pm.  I always alert the aide close to due time and she said didn’t get notified.  I asked if you have a computer there, don’t they came up on at the time? They said at this time they are looking to discharge me in 2 weeks.  I was here 5 last time when it wasn’t so severe.  Not that I want to stay here, but I don’t want to be sent home til I make significant progress here. 
 

So far no PT at 5pm.  I’d like to walk my room myself, but they say no and standing up for a few minutes and walking back and forth, which is OK, makes me see how bad this is and I wouldn’t feel safe on my own.  I’m trying to remind myself that many people have to learn to walk again.  And that it hurts. A lot.  I’m patient about most things, but not this.  

4 hours ago, Kieron said:

they haven't an ounce of common sense or empathy for what their target population actually lives with or experiences. 

All well said.  Again we find out the limits of people to slow down and make connections.  I learned so much at the nursing home of what people need and how easily they can be shoved aside because they are seen as disposable when they have even more life experience.  I’ve even been told by some I hadn’t reached a position to understand yet.  Now I have in many more ways and they could see it now.  It always comes down to respect on my part for every individual.  In response to my med issue, I would like to some try this a few days and then think of living with it for months like I live.  I think those pills would become very appealing to cut some of the agony.  This isn’t just a sprained muscle.  
 

 

 

[kayc]

14 hours ago, Kieron said:

Let her (or him for that matter) live with pain and I guarantee s/he'll be singing a different tune.  That's thing thing about "professionals" who have never actually dealt with pain, surgery, suffering, mental illness, depression, whatever... it's all academic to them. 

Exactly!   Staying ahead of the pain sounds theoretically noble, but how does one achieve that!  (That from someone who lives with constant pain).

OMG, Gwen, everything you are experiencing (meds late, therapists no-showing, etc.) is what I have seen of rehab with my sister.  She HATES it!  I get it.  I do my best to keep her from taking any risks associated with falling.  Also with her dementia she does best in her own surroundings.  It takes a LONG time to get her dementia to settle down when she's disrupted with hospital, rehab, or fire evacuation.  I think back to that time, it was very scary!  It set her back so far!  Even now I'm dealing with the ravages of dementia, she's so adamant that she did/didn't say this/that, it's very hard to deal with her.  And NO common sense!

On a positive note, she got her mailbox installed, thanks to her wonderful neighbor, Mike, who installed her ramp a year ago!  She received her first mail in it yesterday.  I asked her what she got, Spectrum and another junk mail.    I told her, aren't you glad you didn't pay $20 for that?!  (Her "caregiver" charged $20 to bring it to her, even though she's within walking distance).  Caregiver done.  

 

[Gwenivere]

The pain has been getting worse for 3 days now.  CNA set up for X-rays.  I don’t want to go into the surgeons as it’s hard to make trips and I can’t afford the transport costs.
 

One thing I know is if there is something wrong and if it required more surgery,  I don’t know what I’d do. Not after 7 months of nonstop pain.  

Oddly, the last 2 mornings I’ve actually got more sleep.  Once I was settled in which takes about 15 minutes.  I wake up after 2, but going back is easier since I get more pain relief earlier.
They even woke me up this morning unlike my laying here waiting half an hour for a response.  

PT almost didn’t happen because my BP was low.  I can’t stand a day I don’t get up to move, even if it hurts.  I had to beg my therapist to keep going.  
 

Karen, I’m not sure what I said you are referring to.  I know this go round with recovery is much harder and has had many more complications. I should be feeling better, not worse.  Pain better not worse. Go to sleep and only wake with ache on my hip, not shooting thru my spine.   I know I was walking further.  I certainly didn’t need a blood transfusion.  
 

The X-ray tech showed up.  Had to lay flat on a hard board and then on my side.  Most painful experience to date.  It’s been a couple hours and I’m still shaking.  The tech was going to leave which meant I would have to go somewhere to stand.  So it was grit your teeth and do a lot of apologizing for swearing.  Doc won’t see it til Monday.  I’m asking for all best thoughts this is because it was more intense and not the result of another failure. 
 

💕 to you all.
 

 

 

[KarenK]

Gwen, I must have missed something. What setback are you referring to? Hope everything is okay.

[kayc]

You are in MORE pain now?  Is there anyone that can explain why???  You have to wait TWO DAYS for the doctor?!  OMG, Gwen, you definitely are in my thoughts and prayers, I hope you have something to bite between your clenched teeth!  I'm so sorry!

[Widow2015]

Gwen: Keeping you in my thoughts and so hoping there will be a day soon that some healing relief happens.  I can't imagine the amount of pain you are enduring.   Gentle Hug.  Dee

[KarenK]

Either I'm losing my mind or posts are showing up that didn't appear to me before. I hadn't seen the one referring to the X-Ray tech and the hard board. There was only a short post about x rays being set up and hoping it wasn't a setback. That post is gone now????

Anyway, I'm glad the X-Ray nightmare is over. Hope no trouble is found!!!

[Gwenivere]

Karen, I had double posted, by accident, a partial post.  I saw it too and deleted it.  Left the full one which is the one here now.  I kept losing posts somehow and restarting them.  I know to avoid the editor as it wipes things out if you don’t close it.  But something else I haven’t identified does it too from top options.  Now I copy and save things if I’m not done. These pain meds and being really depressed doesn’t help.  Plus the worry something went wrong is scary.

[Kieron]

Gwen, I can only try to imagine how you must be feeling and faring.  The sense of powerlessness and lack of agency or the ability to do much for oneself is one of the most depressing feelings ever.  💖

[Gwenivere]

5 hours ago, Kieron said:

The sense of powerlessness and lack of agency or the ability to do much for oneself is one of the most depressing feelings ever.  💖

That is the worst part of this.  I asked a nurse today to leave a note for the CNA that I want to add a nicotine lozenge to what is dispensed.  She wouldn’t.  Now I have to try and flag down the CNA myself.  The big picture is seeing how dependent they make you feel.  I need help with so many things but I try and do what I can.  I’m not recovering as fast.  My PT woman keeps reminding me I had surgery twice on the same site that failed before.  More work has to be done.  It all hangs on the below……..
 

10 hours ago, kayc said:

You are in MORE pain now?  Is there anyone that can explain why???  You have to wait TWO DAYS for the doctor?! 

All is a matter of timing.  The report and images are probably done, but my surgeon isn’t in the office til Monday.  If there is something wrong, I don’t know what I will do.  It’s been over 5 months of pain.  I can’t take anymore.   I don’t want this to heal with my being so stooped over as I am now.  Last time I was in much better shape. I got a month of doing well til another vertebrae failed, so that got added in.  I’m facing so much more intense work if the X-rays come back OK. 
 

I'm sorry this is  boring, scattered post. I had written one more organized til the software lost it again.  Can’t figure  out why as I know to avoid the editor because it will  cut out a post.  I jumped to another tab several times to check something for this and one time it was gone when I came back.  When I have done that before it rarely happened so that creates frustration trying to recreate what I had done that flowed better. 
 

im going to post this now so as not to lose as I need to make a cal.  Might have more to say or give up.  

[Gwenivere]

Have you ever gotten into a ‘comfortable' routine (where you know the ups and downs when they will come and go, how long they will last) and while it’s sad, lonely, depressing and unfulfilling, you get used to it?  Then something comes along and turns everything upside down.  That’s how I feel in this last 6 months.  Before that I had my redundant days with Melody but we were in a groove.  Dee came deeply into my life.  We established a routine.  Then…..poof!  It’s all gone for first surgery.  We put together another one with Melody with her sitters.  Poof!  Gone again by 2nd surgery.  Now I’m creating another routine I have the least control over in this rehab.  I get asked when I want to do something, but if it doesn’t, I’m just left here.  Can’t watch what I want.  Eat what I want and when.   Haven’t had one hot meal since I’ve been here.  They try and pump me full of supplements and serve unhealthy meals so my stomach is torn up.  They clean off things from my table without asking.  
 

I guess what I’m asking is do you ever want to be left alone, in a different way than we already are, and stop being pushed around by more problems? 

[Gwenivere]

No joke……going to bed the tray table broke sending water on blankets, pillows and my gown.  Haven’t had the fun of laying down yet.  Hope you all do better!

[kayc]

OMG, it just doesn't seem to quit, you need a break in a good way!  I can't imagine turning down one's plea for a small favor as writing a note!  My sister was asked to give a list of her Rxs at the doctor, she said I CAN'T!!!  It's hard for her to write and you cannot read it.  They already HAVE all that!  They said "We don't need that."  She'll have to tell them that again next time.  I told her to let them earn their keep and record it in their own records, like we had to when I worked for a doctor's office!  Good grief.  I go through the redundant questions every time I go in.  I hate it.  If something changes they'd know before I do!  They're the ones writing the Rxs!

I hope they gave you dry blankets/clothes.  

My sister's back was several crushed vertebrae, I don't know why it's not better afterwards, yes it's painful to have the surgery and recovery for some time while it heals, but a person should feel some difference and not for the worse!

[nashreed]

13 hours ago, Gwenivere said:

Have you ever gotten into a ‘comfortable' routine (where you know the ups and downs when they will come and go, how long they will last) and while it’s sad, lonely, depressing and unfulfilling, you get used to it?  Then something comes along and turns everything upside down.  That’s how I feel in this last 6 months.  Before that I had my redundant days with Melody but we were in a groove.  Dee came deeply into my life.  We established a routine.  Then…..poof!  It’s all gone for first surgery.  We put together another one with Melody with her sitters.  Poof!  Gone again by 2nd surgery.  Now I’m creating another routine I have the least control over in this rehab.  I get asked when I want to do something, but if it doesn’t, I’m just left here.  Can’t watch what I want.  Eat what I want and when.   Haven’t had one hot meal since I’ve been here.  They try and pump me full of supplements and serve unhealthy meals so my stomach is torn up.  They clean off things from my table without asking.  
 

I guess what I’m asking is do you ever want to be left alone, in a different way than we already are, and stop being pushed around by more problems? 

Oh Gwen, I understand. I have a boring meaningless set routine that I abhor, and if it gets disrupted I get rattled and my anxiety goes through the roof. 

I want to do things that are fun and interesting, and I don't want to do things at the same time. My brother is all about going out and doing things, going to shows... It gives me anxiety, but I do love living in Southern California, if for no other reason than I love L.A. We're going to a Q&A with the cast of my favorite TV show in April ("Ghosts") and that's something to look forward to at least. 

I am so sorry about your problems in rehab. I can completely relate. Annette was supposed to be in a rehab when she passed. She had a really bad two week hospital stay and they wanted her to get her strength back there. She hated it there and made the choice to come home, against her doctors advice. I should have forced her to stay there, but I could never say no to her. I blame myself for her death still. I admire you for sticking it out Gwen. I know it sucks so much, but you need it. Hang in there camper. 

[Margm]

On 1/18/2022 at 2:40 AM, Gwenivere said:

I am very into researching meds I am given.  I’m concerned that taking opiates a long time will put me into a need for withdrawal situation.  No doubt I need them now for whatever is going on.  Wednesday will be 2 weeks since the surgery.  Every article I read says I should be off them by now or rarely need them.

Gwen, I said that I used to type pain clinic.  It seems that it is almost necessary to be addicted to pain meds after the surgery you had.  I paid attention and researched the patients who had had back surgery, because of Billy's back problems since, well, I guess ever since I had known him.  One time driving the Mustang's bucket seats from Albuquerque to Louisiana, he got on the couch and could not get up.  Eventually, we got him up and the three meds they were giving were the opiates, naproxen, and something else.  It got him up and he did not need to keep taking them, but some back surgeries required it longer.  Thus, the pain clinic.  Could be a questionable clinic, but some of the addicting meds they were trying to help with, they were addictive also.  Actually, it was Billy's back surgery, we were hoping for, when all the other things were discovered.  As the oncologist told us "shoulda, woulda, coulda" and we were familiar with that already.  My cancer was found after regular checks and doc apologized them as "false negatives."  We do what we can.  Right now, you take care of the pain, as long as they will let you, then let them worry with you in another clinic to handle any addiction.   

I have stayed inside (we have had 19 into the 20 degrees), and some of us  southerners hate cold.  I got out yesterday, sunny, too many layers of clothes, went to Krogers, was suffocating in new more coverage mask, but walked a lot.  When I was watching the ballgame later and tried to get up from my recliner, I stutter stepped everywhere.  These old bones and muscles and fat were almost useless.  I realize I need more exercise.  "Shoulda, woulda, coulda." 

They actually do not give us medals for being brave.  When it comes down to it, we have to do what is best for ourselves.  And for that, I think we all need medals.  We need positive goals.  Yeah, as an older than you person, I think that goal is to get out of bed each day.  (I am old, pessimistic, cranky, cynical).  Just synonyms of same thing.  

[Gwenivere]

7 hours ago, kayc said:

I hope they gave you dry blankets/clothes.  

Yes, they did.  Would have been very difficult to sleep in wet sheets, blankets and nightgown.  🙂. I was more frustrated it kept me up longer and I couldn’t get someone in here to turn off the main lights and shut the door.  Called the front desk twice. Lost about a hour.  They woke me up at 10:30am so meds thrown off ahhhhhhhgain. OT was by but not anything we could do today for pain level.  She wants to do kitchen stuff like cooking and while I learned everything last time we are going to have to come up with things as insurance requires I need both OT and PT to stay here.  I definitely need PT.  OT says I was not much better pain wise than than last time.  It's a blur to me.  
 

2 hours ago, Marg M said:

When it comes down to it, we have to do what is best for ourselves.  And for that, I think we all need medals.  We need positive goals.  Yeah, as an older than you person, I think that goal is to get out of bed each day.  (I am old, pessimistic, cranky, cynical).  Just synonyms of same thing.  

It’s the positive goals I get tripped up on.  Getting up everyday isn’t enough.  I’m all the synonyms too.  I miss being normal bored but I could do things to fill time. It’s been so long since I was free to go shopping or do errands.  Get some healthy take out.  Heck, drove a car!   
 

PT was not scheduled for today despite I was told it was.  She popped  her head in to tell me after I asked.  They are going to provide me the schedule supposedly.  All I knew is I couldn’t go thru a day without movement.  I did my own laps.  Told her I was going to do it.  I’m not supposed to, but she said pace myself.  Hoping to get a shower and PT tomorrow.  I need my walker shorter.  Too easy to bend to far now.  So important to try standing as straight as I can as the bones firm up.  Takes 4-6 weeks. Laying in bed is not good as it’s more opportunity to be bent wrong.  
 

Gonna post this, too leery of losing it.  My love to you all.  💕