My Sanity Needed Vents

[V. R.]

10 minutes ago, Gwenivere said:

I'm so tired of the limitations of TV here.  Hoping when I get home I have all my programmed shows recorded.  Plus my movies.  It’s a drag not having pause and rewind.  Wait all day for my Netflix app fix.  Finally here!  Wish they had more

I understand you Gwen, I spend all my evenings watching films and TV series on Amazon Prime, this provides me with  a great escape from my thoughts, keeps my mind off my sad reality for a couple of hours, before I venture off to bed, needing to take anxiety med if I want to manage a few hours' sleep. 

It's probably late evening where you are  now, it's early morning here, been up since 6am,as usual. 

Sleep well. 

 

[kayc]

Day before last it was 98, miserable, got 88 inside.  Yesterday it was about 88 and was 85 inside.  So much for keeping the house cool.  At least I could open the windows earlier.  Left the fans running all night, 72 inside when I woke up.  Didn't cool off much!

Someone at church has Covid, hoping his wife doesn't get it, she's a deaconess.  I had less contact with her Sun. than usual.  Kind of worried about him, he's not in the best of health to start with.

Gwen, I hope you figure it out, I haven't had a roommate in years, I'm so used to living alone.  I think I'd drive someone nuts with my hours!  

Is Dee still working?  I'd gotten the impress she wasn't...

[Gwenivere]

Just had the X-rays.   Something that shouldn’t be so difficult. unless it’s gotten complicated as it is now.  Had to pass on on restorative care because my muscles  were st

AinedrAs always, room torn up and water pitcher spilled.  Feeling the pain, it’s obviously not going to be good.  I was able to do my longest walk today.  Maybe the muscle pill is helping.  It’s just a band aide tho.  I wish I could figure out why I feel so hot all the time.RestMy bank resolved the payment to the casino in my favor.  Hoping its not a recurring one.  Might have to try calling them tho I have so little info.  

[Gwenivere]

Had to have back X-rays done this morning.  Added more pictures with the mid back now that has become a big factor with the stoop getting worse walking now.  I’m hoping insurance pays.  There was more manipulation adding the mid back into the stoop and pain level.  Very hot day as well.  Turned away restorative care as my muscles were sore from doing that.  

Bingo was super crowded.  Went so fast we had time for a couple more games.  Didn’t want to leave as it was cool in there.  Got hot outside. I  have anight aide who is horrible.  The nurse I complained to he got all nice til she left.  Didn’t answer a call light for 45 minutes and has gone back to himself since she left.  The night nurse came to see what I needed.  Don’t they think know  they’ll get reported in the morning?  That’s my plan.  Just have to verify his name.  I was sitting outside and it dawned on me.  WhaR I’m not used to and never have been are people taking a hostile attitude towards you and you haven’t had any interaction with them yet.  Is it you or how they in general do things?  But then I saw him with another aide joking in whatever language they were speaking laughing.  So aren’t you in the wrong job if you don’t like helping people?  I called the last 2 times and the nurse did his job for him.  I never saw him again.  45 minute wait for my dinner and the same for some  water 

Never thought of or felt disliked for existing.  Certainly is odd.  Especially since everyone else is friendly.  
 

Off the prep for Thursday.  Friday I have a session with Jinny after week.  Have so much jumbled in this old brain.  I’m concerned about my shrink Talking to the PA there.  He might take is as "I’m doing well' not knowing one person I have become that I have no idea who they are.  

 

[Gwenivere]

 I’m awoke to another long day of what is going to possibly happen?

The 'mental health' whatever came and I’m a bit more than what she’ can quickly handle.  My shrink called to tell me he he’s decided to cut down one of my anxiety meds.  I was stunned!  I knew he was heading that direction for a long time.  But now?  While in the thick of massive changes?  My nurse here said…..is tHere ever a good time?  Good point but my future hasn’t ever been this complicated.  He went on to  my 'despair' has been driving the anxiety.  For 35 years?  That’s ridiculous.  The best i could do was tell the director of nursing I want to talk to the PA here before she makes any changes.  I want it between him and I.  No using her with his ‘expertise' to motivate and intimidate her.  What a lowly move.

 I was sold this surgery would stabilize what I had for a few years.  I never thought about it going wrong and it certainly wasn’t brought to my attention all possible outcomes. Only I would probably .wind up in a wheelchair sooner than later.  I’m hit with them now.  I guess I was so desperate I drank the kool aid.  I’d normally pursue all options first, but I wasn’t told them. Still waiting on the X-rays which I’m sure will be thrilling and jolly news.  Have Melody heavy on my mind.  😢

I just looked up the new supplements for my pain mix and it has withdrawal also.  Geez. I was not told that..  It would have a catch. Now II need to decide about that.  Last thing I want is another battle to fight now or at all.  Decided I’m facing enough withdrawal ahead, especially since my PCP will rush it as much as he can. I just gave the facility the last scraping of my money for the rest of the month.

So,, a bit more than I expected.  I’ll see what today brings.  I thought it was going to be cooler, but that’s not til Saturday.  

 

 

[Gwenivere]

 

Woke up an hour late, A different morning nurse than usual so my meds were 2 hours late so she thought she’d just skip them til my next dose which would really mess things up.   Couldn’t get an aide and the phones were down.  The day is all thrown off.  PT came by saying I get reassessed Monday.  Kinda late as it’s thru my insurance which I don’t understand.  I’d call but I’m sure I don’t want to up my anxiety talking to them.
 

While talking to the PA was begging her not to change anything right now.  2 meds they want to start cutting back on that could involve withdrawal.  The opiate I do want to get rid of and the other one of my anxiety meds I want to keep.  I already wrote how my shrink wants this because my ‘despair' is driving the anxiety.  I had counseling and she said that made no sense as she has has known me for 30 years and I struggled with anxiety, not despair all that time.  Ive got just a little over 2 weeks left here to figure so much out.  Then there will be the unknowns at home and unprepared.  Called Dee but had so little to say. 
 

Nothing feels right.  I’m so tired of waiting for the next problem.  Not that I want them coming faster.  How about something different like none for awhile?  It has to be possible.  I volunteer to find out. 
 

 

[kayc]

Wow, I don't know how I missed yesterday's posts!  

Can you, once you get out of there, go back to your anxiety meds as you will have your old doctor?

I don't understand any of this!  I am shaking my head.  Even to a layman...

[Gwenivere]

No, I won’t be able to go back to my old meds and why I am more stressed out.  He has decided and he has the power. Never  felt like an 'addict' until this.  They just gave me back a livable life.  He’s changed all that.  Major problem will be finding another provider and hopefully undo how awful I feel about myself thanks to him.

Had a bit of negative excitement here.   A resident attacked a nurse for meds.  Had state troopers here and EMT's.  Don’t know where she was taken, but she can’t leave her room now that she is back.  I saw her every day bugging every nurse for meds a couple of times an hour.
 

Called Apple as my iPad got locked up for half an hour.  Really was sweating that one but they got it back.  What minor change I was making confused it.  I give Apple kudos for never giving up.  You wouldn’t have to read my sanity posts, but I couldn’t do anything and its my lifeline to the world.  
 

On a walk/shuffle, a staff member asked how I was doing and I said, not very good.  They said…….that’s great.  People just do this polite thing. and don’t realize how cold than can feel.  Don’t ask if you’re not going to listen.  
 

Dee read me some  mail from my insurance saying they provided the court with more information.  From what i heard, no info about the bedsores was provided.  That is vital and there’s no way I know to get it in the record.  I so wish had a lawyer in the family.  If I had known this was going to happen and no improvement made here for staying, I would have retained one.  That would have made for many months at home that I don’t know if i could have handled.  Yet here I stand facing the same thing in a bit over 2 weeks.  
 

 

[kayc]

5 hours ago, Gwenivere said:

On a walk/shuffle, a staff member asked how I was doing and I said, not very good.  They said…….that’s great.

 

[V. R.]

7 hours ago, Gwenivere said:

staff member asked how I was doing and I said, not very good.  They said…….that’s great.  People just do this polite thing. and don’t realize how cold than can feel.  Don’t ask

Oh Gwen, the way you wrote this made me giggle  and cry at the same time, then anger came upon me, thinking if I were in your shoes, I would have 'imagined' just giving that staff member a good old slap on the face, for being so heartless😠

 

 

 

 

 

 

 

 

 

 

[Gwenivere]

I hadn’t thought of that, but it would have refelt good!  I wish I could do that for a lot of the stuff people have said to me.

Getting harder and harder to get going each day. It’ all fee so pointless.  I’m really angry that my insurance got to submit more info on my appeal and I didn’t know that was allowed..  Now I feel I have to get the bed sore info in there as well as. verify what I think is there.  Not a task I was planning  ton. I left a VM Sunday to get a call back to find out what the court has and if I can add more if needed.

No therapy today, but sitting thru bingo must have not been good.  I know that muscle relaxant worked, but I felt more sick on it.  If I ever need help it’s now.  I just hate the cost.of side effects.  
 

Been trying to find clothes for the rest of the summer easy to put on which means buttons.  Definitely harder than trying them on like the-old days..  more fun clothes.  An aide said to me……don’t get old.  I replied……too late..  
 

 

 

[kayc]

Wishing you luck with both endeavors, it has to be hard figuring out things to wear that aren't a pain to put on.  

[Gwenivere]

Totally forgot I had a remote doctor appointment thiss afternoon.  Had to move a zoom chat to tomorrow. I don’t know what it is about this time of day, but I can barely stay awake.  This alway lasts well into the afternoon.  Did a long walk and want to go back to sleep.  I stopped taking one med that made this worse and now what it helped is back. I don’t want to take it because it causes dependence.  I should call my shrink about meds too, but he’s already started a problem on dosing he wants changed I’ve written about that create withdrawal. Everywhere I turn is discouragement.
 

I've left a 2nd call for the head nurse for some paperwork I need for the court.  I know their they’re busy, but I’m running out of time here.  I don’t want to be doing this when I get home.  That will be nightmare enough.  Made a dreaded call to my shrink to try and have meds in place.  I already know he’s going to complicate things. Even hearing his voice makes me sick.
 

Had an appointment with my PCP.  I think he said the oxy withdrawal will be 20% every 2 weeks which seems a bit fast.  I read his notes from last month which I hope is what was sent to court saying it was unsafe for me to go home.  He said he could set up home health.  I’m not liking any of the plans I’m facing going home because I already know it’s not safe.  Mentally I’m very concerned.   I’ll lose walks and any social interaction.  Besides Dee.  Having people know you feels good.  I like hearing my name passing people.  You feel you exist, even if briefly.

It’s that lonely time of night.  I feel Steve and all our kids swirling around me.   The activities puzzle has a golden retriever in it that look’s just like Mel.  Makes it a bit tough to work on.  Heat coming back today.   So feel for those in the midwest as we had that last year and it’s very dangerous   Take care all..

 

 

[kayc]

Feeling for you as you go through this...wishing it could be Melody there instead of a puzzle...

Haven't heard from Karen or Gin or the others in some time now!

[scba]

38 minutes ago, kayc said:

Feeling for you as you go through this...wishing it could be Melody there instead of a puzzle...

Haven't heard from Karen or Gin or the others in some time now!

Also from Marg....

[Gwenivere]

Marg hasn’t been here since May.  I know she said she was overwhelmed in the real world and had things to  tend to.  Seen Karen but not Gin.  Dee is MIA too.  This is like a roll call.  🙂

Another fun day here.  Meds late, totally forgotten one time, every time I got settled someone came in with something to do.  Shower thrown in too.  Had to get a walk in before a Zoom chat that was put off 2 days.   Haven’t heard a word on paperwork I worked hard on getting  in place Monday. The simple record of bedsores.  PA was just here and it was the same redundant conversation.  No one has a clue of facing this in my shape.  The most ridiculous was a wheelchair.  
 

I’m trying to find out if there is AC here for next week.  Have to talk to Dee about the house to get fans and the portable AC ready.  I’m sitting here wondering how I will handle this transition again.  It’s so much to take in.  I can’t escape the pain laying in bed anymore.  That the opiate makes me feel better.  That the dependence is real.  I didn’t ask for this but I’m trapped in it.  I want.to break down and cry.  I want Steve to tell me it’s going to be OK.  I’m tired of not seeing a future I want to be in.  I want to be with him so much because nothing was a dead end with him.
 

 

 

[kayc]

In the 90s this week, with no A/C it is miserable, almost as hot inside as outside.  I ordered an A/C this morning, won't be here for another week, even if it only lowers it 10 degrees, it'll make a huge difference.  I got a free standing one, my windows aren't up to using them...

I know, I wish we could call all the people back that used to be here...

[KarenK]

I'm still around, just haven't had much of importance to add to the conversations. Just feeling a bit burnt out on life, I guess. A few days ago was what would have been my daughter's 58th birthday. Hard to believe that I had a child so long ago and now she is gone and I am still here. It's frightening that most of my life is over. I'm nowhere near ready to exit yet.

Gwen, hope you find a way to be comfortable at home if fate sends you there. You won't be completely alone with home health coming in and Dee will be nearby, if not living there. Life is full of adapting as you well know. Not much we can do about it.

Sad to see more new folks here, but glad they found their way to us. For me, time has been the greatest healer, I guess.

Looking at around 113 here. It's a blast furnace out there. No AC would mean death. Saw a news article about UPS drivers here passing out on porches from heat. No AC in their delivery trucks.

Have also been wondering about Dee, Gin, and Marg. Hope they check in.

[Widow2015]

Karen, Gwen and all:

Karen, I can only imagine the pain you experience when you think about the loss of your daughter as well as Ron.  Such sorrow we have to face in this life.

And Gwen, please know you are in my thoughts, and I do wish whatever is decided for you, you will be able to find a way to feel safe and secure.  You are amazing to have survived at your rehab center this long.  

I still sign on daily just to see how everyone is doing.  I just don't have much to add with my boring life.  Am still trying to adjust to my new country home after living in the city all my life.  Country life does have some upsides.  Just the other day got to see the cutest little baby deer with his mother outside my bedroom window.  My cataract surgery allows me the freedom to be more comfortable driving and more independent.  I don't go anywhere new or different, only drive the same road down the hill into town to the grocery and post office.  My doctor appointments are all in the opposite direction and only drive to those places I feel I can manage.  I still have conversations with my Bob and crying spells even though it's 7 years since my dear husband passed.  Can't say I've gotten over my grief, I just feel for me I've become numb to the pain of his absence.

And yes, I totally agree with what Karen stated about the new folks finding this Forum.  So very sorry you had to join.  

Hugs to all, Dee

 

[KarenK]

Dee, so good to hear from you. I confess I would have no trouble at all moving to the country. It sounds wonderful.

So glad your eyes are doing really well. I have lost confidence in driving as I still have double vision in my left eye when turning my head left. Doesn't bother me watching tv unless my eyes are really tired. Fortunately I don't really need to go anywhere except medical stuff and haircuts, so I schedule around my son's days off. I'm sure my life is more boring than yours.  lol

Being numb describes it well.

Take care

[Gwenivere]

I’m having to write this offline.   I can’t get an answer of what’s going on.  I just hope it’s back for the evening for Netflix.  We’re facing 90 plus weather next week with no air conditioning.  A lot of people are going to be sick, including me.  I can’t handle 75 which is normally comfortable.  I’m sure it’s the opiate and low anxiety meds.I got a call from my shrink.  His plan is to stop all anxiety meds. Definitely time for a new one.  Said he would write 3 months supply of what I’m on here and that’s it.  That’s not even enough to do a taper if I wanted to.   Add in my doc wants to do an opiate taper.  

I’m finally back online on another tough day.  Didn’t win anything at bingo or sit with anyone I’m close to.  Got asked questions like I was staying.  I keep hoping some miracle will happen that my insurance will green light my getting help without moving. Then there’s that feeling I can’t be fixed.  
 

I don’t know what to say anymore.  I keep doing all the stuff I have been doing and nothing changes/improves.  I’ve worked all this walking could be hurting me.  What if it is keeping me out of a wheelchair?  But then, where would I go or stay in my house?  It’s a rats nest of unknowns.   I can’t get away from thinking about it unless I trya and do something.  Then I wind up laying here and sinking again. 
 

Karen, I’d really settle for boring right now.  Other side of the fence and all.

Dee, how wonderful to see deer.  Te town sounds quaint.  I would have an awkward time with it too. Not that I went anywhere in the major Seattle.   Doesn’t make it sense really as I avoid it.  I’m still mourning Steve all these years too.  I’m not sure I’d want him to see me now.  He years without him have really ravaged me.  They’d still love us tho, right?
 

The resident across from me wanders around lost all day.  I don’t know where she is in her head.  I feel the same.  

[kayc]

Karen, it's good to see you back online, we don't let not having anything new to add stop us!

You know, I was thinking about when my mom went to dementia care, within two weeks she didn't think about the home she'd built with my dad and lived in for 59 years!  She was content.  A blessing, really.  Before that time, she'd been anxious, as she knew something was going wrong with her brain.  My sister was always able to fool herself, lived in a world of fantasy, I guess in a way it served her better in the end.

I ordered an A/C unit yesterday, won't be here soon enough for me, now they're saying Tuesday.  Crossing fingers all goes well with it.

[Gwenivere]

IToday I have an assessment of what I need when I eave here. IThey want to talk about goals from here.  What is realistic since I can’t walk upright?  That every moment is in pain?  That I can’t go anywhere?  Sit somewhere day in and out doing nothing?  How is that living?  You take up space and contribute nothing.  I can’t breathe well and my heart pounds from the slouch.mMelody's caregivers want to check in on how well she’s doing.  Might as well dig out my heart with a spoon.  
 

Ee  I took my walk and talked to the nurse.  She says if it’s that bad I need  to be seen by a doctor in person.  So many conditions.  Not an ER thing.  They just do tests and send you to your doc  I don’t want to guess.  I’m so sick of all this.  My PCP doesn’t have blood draws or X-rays.  A lot is physical but aggravated by the emotional.  Knowing the docs I will be dependent are on treatments I’m not comfortable with is a bad thing.  I miss my sole doc that we saw eye to eye.  The last doc I ever felt a partner with.

My assessment was walking up and down stairs.  Talked about PT I could get here minus one. little detail, I have to leave a week from Sunday.  This is turning into a circus.  I left a message with the surgeon simply saying this seems  a failed surgery, what happens now?

Dee's coming up this weekend and will take some stuff home.  Having her bring up some goodies for activities and Helen.  She bought me some candy and said don’t pay her back.  (I had forgotten) mine). I say pay it forward.  
 

Off to another day closer to the unknown.  💕 to all.

 

[V. R.]

Gwen, I seem to understand that you will be finally going back home soon. I do hope you will get all the help you need. 

Wishing you strength, we're having a terrible heatwave here too, temperatures in 100s.🥺

[KarenK]

I guess it just isn't feasible, but I'm a bit surprised that your surgeon has not come to evaluate you or at least sent an associate knowing how difficult it is for you to come to him and how badly things are progressing. I wonder at what point today's doctors forget "First do no harm".