My Sanity Needed Vents

[kayc]

Trying to pace myself by spending time every day picking up limbs, it's a lot.  At this rate it'll take months, until Spring or later.  I can't believe how bad that storm was..  Can't get Jack to put me on his schedule until Spring or so.  So trying to tackle what I can.  With everything else I have to do, 1/2 hour to an hour/day is all I can do, and I work up a sweat and get worn out.  But some days have to be gone or have cooking to do, so it's hard to do this every day.  I remind myself I'm fortunate to be able to do it but even so it's difficult with my severe loss of strength and ongoing pain.   I try to ignore it but suffer with it esp. at the end of the day when there's nothing to occupy  my mind from it.

Gwen, I'm with Marg, get what relief they'll allow you and deal with the addiction later.  What a choice!

[Gwenivere]

I finally got my landscapers scheduled.  Supposed to be cleaning up all the debris this week.  My body and mind aren’t on the same page enough.  I catch myself thinking I can do something (more so at home than here) to find out not a chance!  The simpler, the more depressing it is.  It’s hard to accept we are losing our stamina.  I never thought I may not be able to manage my home.  My albatross is my back, you your hands and arms.  Normal aging stuff wouldn’t be such a threat.  I’d just need my housekeeper.  I could take showers on my own.  Not easily, but I could.  Being dog less has been hard as it’s been decades since I haven’t had at least one.  I’m grateful for Dee, but  I so want my 24/7 companion again.  
 

I've called the surgeons office about my X-rays and they didn’t have the results.  Didn’t even know what facility I am at. They planned on going over the results in February. I went thru hell to get them done.  It’s an example of how I have to do more than I feel I should.  Why aren’t they on top of this?  Had I not called today, they wouldn’t have tried getting them.  It’s 2 weeks til I talk with them I need to know if the surgery is stable and PT is helping, not making things worse.  Now. I deserve to know this.  I don’t expect lots of detail but assurance.  I know I’ve had double surgery.  Our minds need as much attention as our bodies.  

Having another night of too much pain.  I did my walking and feel it was a mistake.  I push myself when I’m on my own.  I had my walker made shorter and it didn’t feel as easy.  Sometimes I wonder why I bother.  Tommy called to check on me and catch me up on Melody.  They are more than happy to keep her another few months.  He said he would be the one then learning to live without her.  I hope I do get her back.  It’s so hard feeling I will being so laid low.  

The facility doctor came by yesterday morning.  Well before 10am that my sign says.  I couldn’t talk to him.  He came back at 10 and it was obvious I was struggling to get up and in no shape to talk. Had some bumbled conversation.  Said he’d be back but I knew that wasn’t true.  Someone came in to do vitals I told to leave.  An aide tried putting my tray on the table instead of the shelf.  I have a great aide who is going to move it face height on my door.  It’s the only time of day to get some peace.  Even if I’m in pain.  Here’s hoping today goes a wee bit better.  For all of us.  💕

 

 

 

 

[Roxi]

Gwen i'm so sorry...it's very hard to always have pain...i know words are not powerful but i really wish you could get better and you may go home with your loving Mel hugs Roxi

[KarenK]

Gwen, I really don't get this surgeon's office. You'd think they would be bending over backward to accommodate your needs, especially since he botched the first surgery. Hope he reads the X-Ray right away.

What is the logic of a shorter walker? I thought the goal was to be able to walk more upright, not bent over.

[Kieron]

I'm with Karen on this, that's just crazy. Is there a patient advocate at the surgeon's office, hospital or clinic?  Someone has to be accountable.  In my state we have something called an ombudsman which is like a bureaucrat who can pull strings to make things happen for patients or others who are vulnerable and at the mercy of incompetent professionals who aren't doing their job.

Gwen, could this office help?  https://www.waombudsman.org/

The Washington State Long-Term Care Ombudsman advocates for residents of nursing homes, adult family homes, and assisted living facilities. Our purpose is to protect and promote the Resident Rights guaranteed these residents under Federal and State law and regulations.

We are trained to receive complaints and resolve problems in situations involving quality of care, use of restraints, transfer and discharge, abuse and other aspects of resident dignity and rights.

Info & Intake line:  1-800-562-6028

The Washington State Long-Term Care Ombudsman Program has been busy during the pandemic reaching out to long-term care residents by letter, phone, and postcard.

[kayc]

Got up at 3 am to tend my diabetic groups and the internet was down...they said five hours, it was more.  Spent a long time on the phone with them, they told me they had an outage in my area (why!  The weather is perfect!)  So I lost all the "free internet time" I get in the middle of the night, up early for nothing.  Too dark out to pick up branches.  Got my firewood in.  Snow coming early next week again, I have so much cleanup yet to do from the last storm!  I hate winter but last summer was even worse with fires and drought and fire evacuations.  Don't know what to look forward to anymore, summer and winter are the long seasons, spring and fall all too brief.

Gwen, I wish every day would get a wee better for you, it might be so slight as to seem imperceptible, but I hope you can begin to see some lessening of pain, SOMETHING to give you hope!  

Kieron, thank you for the numbers, information!  

Have to go to my sister's this morning, she said the numbers wouldn't stick to her new mailbox as it's "too cold."  It's not even freezing!  Will bring my 3M glue.  Their glue is probably dirty now so I'll have to clean/dry them but once it's hit the ground, they won't stick.  She probably didn't press them on hard enough.  
Can't argue with dementia though.

 

[Gwenivere]

15 hours ago, KarenK said:

You'd think they would be bending over backward to accommodate your needs, especially since he botched the first surgery. Hope he reads the X-Ray right away.

What is the logic of a shorter walker? 

Good pun, Karen.  I can’t really say he botched the 1st surgery.  My bones weren’t strong enough to handle how it is done per protocol.  It did lead to involving another vertebrae.  The added stress of that for months definitely did not help.  I got the X-ray report today.  It sounds like it’s stable but involving spasms now so another med has been added that I didn’t react well to at regular dose. The CNA is doing a low dose and upping the oxycodone.  I am very concerned about addiction.  I didn’t have to wean off it last time I was here.  Of course last time was much different.  I’m angry to add in this narcotic element.  
 

The walker was a change I asked for as it seemed it was too tall.  After 2 days I’ve found it now too short.  I don’t trust anyones judgement including my own.  I feel tangled in so many things I could scream.  
 

10 hours ago, Kieron said:

The Washington State Long-Term Care Ombudsman advocates for residents of nursing homes, adult family homes, and assisted living facilities. O

Thanks Kieron.  This doesn’t apply to short term rehabs.  I checked the link.  They get involved in places you are living in long term.  My problems are.meds and pain management.  They want to give me more.  Everyone says don’t worry about getting off them.  It’s always so easy when it’s not you.  I know they are trying to help, why, oh why couldn’t this have gone  smoothly the first time?  Last time when I went home I didn’t have any.  
 

My biggest concern after having PT today is how stooped over I am.  I could not live an independent life like this.  I’d not be able to get to my car, shower, move a walker in and out of the house or shop.  I got longer distances in the hall yesterday. The PT guy said we can try the bars in the gym to try walking on my own.  Will be THE topic when I talk to the surgeon.  Just a tad pessimistic the pain is worse as well as my back so changed. 
 

I ordered the free Covid home tests for Dee and me.  Was easy.  Has 4 kits for free. They send them to homes, so don’t use a business address.  

https://special.usps.com/testkits

Dee took the pendulum clock Steve’s parents gave us as a wedding present.  Very expensive to fix.  I want to, but I’m going to be hit with lots of bills medically for the the beginning of the year.  I’ve found one that is a duplicate, but uses batteries which would be hard to change having to take it down each time.  I guess there are times to let things go.  I want the pendulum sound back.  That’s what I miss.  It was the heartbeat of our home.  💗

 

[Widow2015]

1 hour ago, Gwenivere said:

Dee took the pendulum clock Steve’s parents gave us as a wedding present.  Very expensive to fix.  I want to, but I’m going to be hit with lots of bills medically for the the beginning of the year.  I’ve found one that is a duplicate, but uses batteries which would be hard to change having to take it down each time.  I guess there are times to let things go.  I want the pendulum sound back.  That’s what I miss.  It was the heartbeat of our home.  💗

Oh Gwen, so  sorry you are thinking of letting the clock go.  Maybe, just let it stay put on your wall a little longer.  Maybe your finances will settle down within time and you can have it repaired later.

Now, I hate to share my good news of the clock that Bob had purchased in Germany in the late 50's and had it sent to his parents.  Eventually after his Father passed and his Mother moved into her apartment she gave the clock to us.  It hung in all of our homes here in Washington since the 70's.  Bob kept it wound and I loved the chimes.  It stopped a few years before he passed away and when I sold my house I couldn't part with it.  For months it laid on my bedroom floor in a protected place.  About two weeks ago my son had some free time to get some of my pictures hung and decided to hang the clock, even though it wasn't working.   The clock started working again.  The familiar sounds makes me feel like  Bob is here with me. 

Reading your recent posts you are sounding like you are getting business taken care of in spite of your pain.  It's understandable your feelings of the opiates.  But, I have to agree with Marg's suggesting the addiction can be addressed later.  It is good to see you are alert enough to make calls and arrangements preparing for your return home.

I have been buried in paperwork trying to pull my income taxes together.  Don't like this time of year.  Hoping for a good night for you.  Hugs, Dee

[Kieron]

8 hours ago, Gwenivere said:

This doesn’t apply to short term rehabs.  I checked the link.  They get involved in places you are living in long term.

Dang it. 😦

[kayc]

8 hours ago, Gwenivere said:

I can’t really say he botched the 1st surgery.  My bones weren’t strong enough to handle how it is done per protocol.

You are nicer than I am, Gwen!  Seems he botched how he handled things to me!  He should have known the state of your bones BEFORE he opted to do THAT surgery!  Did he not perform a bone density test beforehand?  It's neither here nor there now but if you ask me, he alone IS responsible for what you've been put through unnecessarily.

Dee, I don't even want to think about tax time, I hope to get winter behind me first.  More snow coming, still picking up branches.  The devastation is enormous.

 

[Widow2015]

kayc:   Oh please don't mention SNOW !  I still can't imagine how you manage with all  you do.  But, I do understand you loving your surroundings.  At least you have your youth at 15 (+/-) years younger than I,  and so much energy in spite of your painful hands.  I've got to get my tax paperwork pulled together before March as the month will be many trips to cataract doctor appointments to have my cataracts done.   This tax project used to be done by my husband as he was the one with the brain in this relationship.  Dee

[Gwenivere]

5 hours ago, kayc said:

but if you ask me, he alone IS responsible for what you've been put through unnecessarily.

I’m trying to think back and I do think a bone density was brought up. It’s not a matter of being nice, I had no choice because had I done nothing, I would have wound up in a wheelchair for good.  Past a point they could even try.  Guaranteed to lose any chance of staying in my home.  We talked about why he did it this way on the 1st surgery.  He said he didn’t want to use large screws to possibly crack the vertebrae.   This is also for protocol.  The failure rate is low, but it’s there. Today I’m trying to track down the CNA about a pain med she ordered.  The nurse said she’s seen many people feel more loopy on it than the opiates.  I want to confirm the dose as she said it would be smaller.  I’m desperate.  Last time I was here PT was hard but I’d feel good going thru it.  This time I dread it.

[Margm]

On 1/25/2022 at 1:41 AM, Gwenivere said:

Here’s hoping today goes a wee bit better.  For all of us.  💕

I'll take that Gwen, and I sure hope it does go better for you.

[Gwenivere]

14 hours ago, Widow2015 said:

Maybe, just let it stay put on your wall a little longer.  Maybe your finances will settle down within time and you can have it repaired later

 
That’s the way I’m leaning.  It’s not a must do thing now.  We all want to keep things for sentiment.  The clock guy said the workings were top notch, but the casing was cheap.  But it was our cheap.  

15 hours ago, Widow2015 said:

It is good to see you are alert enough to make calls and arrangements preparing for your return home.

I’m amazed at things I get done being in pain, depressed, pain meds and Xanax.  Today I’ve felt really out of it.  PT was by and it was a very short session.  They want to go a bit slower and have me work on core muscles to strengthen my spine.  That means a lot more down time.  I want so much to be home.  The loneliness I feel there is better than what I feel here.  Lots of people, but not ones I want to be with.  At home I can watch things of interest rather than the repetitive movies and old shows.  I could eat when I want and warm.  Get my nap in easily.  Impossible here. Had counseling today.  I so look forward to taking with Jinny, but then get all choked up.  We talked about not feeling as old as we are in our heads but realizing how limited we are becoming.  I woke up at home thinking of chores to the reality I couldn’t.  Getting up and down in bed easier.  Just left the pillows where they were but can’t here.  Everything has worn off by the morning.  
 

I have this amnesia thing about timing last time I was here.  That was 5 weeks, maybe more.  I haven’t been here 2 yet.  Since I did this before and wasn’t so depleted, I feel I did better.  I at least had reserves.  The thought of weeks more is overwhelming.  I keep being reminded I have forgotten how hard it was at first.  Now I’m told to keep in mind it’s been 2 major surgeries and be patient.   Haven’t quite figured out how to do that when pain never stops.  So glad I have all of you.  ❤️

[V. R.]

Always thinking of you Gwen. 

A big hug to you. 

Enza❤️

[kayc]

I understand better now, Gwen.  Well I keep hoping they can manage your pain and I know it'll take a while before you see improvement/healing but I still hope for it.  What else do we have if not for hope?

Now they're saying snow SUNDAY on!  Don't know how much yet.  Still picking up branches from the storm, it's never-ending.  I feel like my place will never look the same again.  Will have to pay Jack to help by chain-sawing the huge ones and helping me move all this to the woodburning pile (will load his truck and then offload it.  Yay, more moving wood.    At least most of my place looks neater now with it in piles, still have one huge area to do yet though...ugh.

Gwen, wishing for a feasible day for you with less pain and for something to go right for a change.

Ana, I'm sorry you lost him so young, I thought WE were young!  If it'd happened to him at your age I never would have met him, that is a horrifying thought to me...

[Widow2015]

8 hours ago, Gwenivere said:

That’s the way I’m leaning.  It’s not a must do thing now.  We all want to keep things for sentiment.  The clock guy said the workings were top notch, but the casing was cheap.  But it was our cheap.  

Gwen:  So sad to read your day didn't go well yesterday and totally understand your wanting to be home on your own schedule.  Keeping you in my thoughts.  💞  

"We all want to keep things for sentiment" is exactly how I feel about everything in my home.  I've told my kids and grandkids everything I have has a story.  It all helps me through my day. Dee 

[Gwenivere]

On 1/27/2022 at 5:59 AM, kayc said:

Gwen, wishing for a feasible day for you with less pain and for something to go right for a change.

First news I got was have a roommate or move rooms.  Move I did.  My breakfast was missing.   As they moved the furniture I didn’t have to pack up things.  Was still work getting the furniture in the right place for reaching things as I did.  My call light did not work.  Was given the wrong direct phone number.  TV wouldn’t work but got going, but now the ratio is off so the little thing has an even smaller picture.  Have to wait til tomorrow to get that fixed.  PT showed up just as that wound up and it was a very brief session for activity.  More bed exercises than being up.  Only got a short walk. Said to get used to being bored and try to be patient.  It’s only been 3 weeks and can’t have anything go wrong as it can’t be fixed again.  Spent time changing my number to people and doctor offices. 
 

Not like I need it, but I keep being told if something causes pain, don’t do it. It’s impossible to not move without feeling it.  My body often gives me signals to move because it’s uncomfortable.  Hurts to do so, hurts not to.  It seems to be getting worse every day.  Makes one paranoid!  I'm so tired of feeling sick from eating and.all the meds.  
 

Life is becoming this room.  Just these walls I see all day.  Nowhere for my mind to go free.  All is scheduled and controlled.  I can connect with voices from outside I know.  Sometimes 2D.  It’s not the same.  I can’t escape into entertainment that is new to me and also controls with advertising and no ability to skip, pause or rewind.  Yes, I know even 50 years ago we didn’t have anything like what we have now.  But we do now and you can’t miss something you never had.  I’m controlled by their food and when.  Im grateful for the internet so I can squeeze my fingers thru the bars and reach out here and in mail.  Need to seep.  All this will be waiting in the morning..

❤️ to everyone.
 

 

 

[kayc]

I had a horrid nightmare last night, I had a car accident and my face/mouth took the brunt...Woke up in hospital, couldn't see as glasses were broken, mouth wired shut, they were pumping me full of carbs intravenously, I didn't know what happened to Kodie but couldn't talk, didn't know where purse or cellphone was.  I have spare glasses in my car but apparently they totalled and hauled off the car and no one went through it.  Only gave me what II owed on the car so no transportation.  Couldn't get into my clothes and my diabetes through the roof.  Figured I did it once, could do it again.  Found out Kodie was killed.  That finished me off.  How do you go back to sleep after a nightmare like that!  I didn't.  It was 11:45, gave up at 3 am.  Even coffee isn't helping me.  

Only you can't wake up and find out it's all a bad dream.  This is one of the things that hit me.  You're living your nightmare.  Gwen, I'm so sorry.  I hope the passage of time works its miracles.  I really do.  You need it if anyone does.

[Gwenivere]

OMG Kay!  What a cruel and horrid nightmare!  I don’t know how you go back to sleep beyond holding your baby to enforce it was a dream.  I had dreams Ally was hurt and have to hold her close to me to assure myself it was only a dream.  Why our minds torment us like they do I don’t understand unless it happened and it’s like a flashback we have to work thru.  But to create it from nothing?   Never understood that and I was a psych major.  I had dreams of fears tho.  Most were living alone being a single woman  Someone in my room going  abuse me,  not being to move or make a sound, pure terror.  I hope as the day progresses it loses power.  Some stick for a long time like mine did of that night I was about 24. It’s still right there in detail.  I had some wonderful ones that didn’t stick in detail.  None of those did.  Just snippets here and there.  Bad ones stick more.  Fear is so intense.  Good feelings we relish at the time, assume there will always be more.  I didn’t live in fear til Steve died. It’s a different fear than panic attacks.  It’s a fear abut life and death, maybe somehow got triggered in you last night.  The storms coming?  On your own getting ready alone?  Worry about Kodie in it?  Your identity?  .Something pulled them to the forefront.  I was never one to put much on dreams until these years alone.  My mind has to be fought to be heard as it now has so many jobs to sweat since Steve left.  Things I never worried about because he handled them.  

 

 

[KarenK]

How awful for you, Kay! I can relate to frIghtening nightmares, having had my share of them over the years, the kind that leave you shaken all day. Unfortunately, I know where they came from.

Some nightmares stay with a person forever. When I was a small child, I would dream there was a witch crouched in my closet. I'd wake up screaming. Shades of Wizard Of Oz, I guess. I would not sleep with the closet door open and didn't until I married Ron. I guess I thought he would protect me and he did for a time, until he became the witch in the closet, but that's my cross to bear. Life Is cruel sometimes.

[Gwenivere]

Just had PT and I get conflicting answers with each therapist.  Yesterday I was told not to walk much.  Today another said we could do 2 hallway walks which are very hard.  Another won’t let me if my blood pressure isn’t in her comfort range tho I’ve run on the low side my whole life.  MY big concern is this healing being so stooped over.  No one can answer the possibility of that more accurately than the surgeon.  One of the therapists said there are ways they do this. Pain control and/or posture.  I’m hoping this was for both.  All I know is if this heals like I stand now, I will never be independent.  That’s my nightmare.  
 

I’m looking at the calendar.  I have one more week my insurance covers being here in full.  I needs more weeks with a hefty copay.  That will be thousands of dollars on top of almost 2 at the hospital.  Then there will be Melody’s.  So.much for thinking I was well covered. Had this worked the first time Mel would never have gotten hurt, nor me twice for surgery and rehab.  So this will drain down my retirement big time to stay out of debt.  It’s so hard trying to recover with this hanging over your head.  Steve would calm me down and we’d have more income with disability benefits. I don’t want to do payments as they carry charges for that.  I prefer to know where I stand and work around that. 
 

Nothing happened crazy today.  My TV didn’t get fixed.  It’s a good thing I’m not trying to watch anything new on it.  I’m just wondering if their cable will change the reruns over the next few weeks.  D's been watching good stuff.  I like Kill Bill, but twice in a few days was plenty.  Same with Tombstone.  US Marshals.  Gawd, I’m getting so boring I’m running of a TV schedule!  
 

I did get a spam call about 7am.  Was relentless.  Kept waiting for the phone to stop ringing.  Might have to back to unplugging it at night.  In this new room there is a safety night light. I prefer the broken one and dark.  My nurse this morning heard my white noise fan and said she couldn’t sleep with sound.  I’d hear a pin drop so need it.  The night I forgot to plug my iPad in and when it stopped I woke up immediately.  Too quiet and I could hear the activity in the hall.  
 

Sleep well all.  💕
 

 

 

[KarenK]

Gwen, I would be very concerned about healing stooped over. When can you talk to the surgeon about it? I assume it has a lot to do with your muscles needing to be strengthened.

So sorry about the financial worry. It seems we pay high premiums, yet still get slammed in the end.

[kayc]

13 hours ago, Gwenivere said:

I was a psych major.

I didn't know that!  Wow, I'm impressed!  Didn't you work for Boeing? 

My eyes burned all day but I managed to function, decided to go the 100 mile round trip to get groceries as I want a day (today) to not have to go anywhere (except Kodie's play dates, walking), managed to vacuum, do two loads of laundry, bone a chicken, make a chocolate peanut butter smoothie for/with dinner.  Was asleep by 7:30 pm.  My BP was still up this morning, not dangerous, but need to get it down.

8 hours ago, Gwenivere said:

 So this will drain down my retirement big time to stay out of debt.

My "retirement" is being eaten quickly by the stock market.  I'd like to leave it in a few more years to recover but the gov't says I need to start taking it out I think next year, need to check with tax person.  I'm sick that it's doing this at the worst possible time.  My other stock lost so much $ and the economy doesn't seem on the upswing so I gave up and pulled it out, enough loss is enough.  Insurance shouldn't limit us so strictly, it's all about $ isn't it!  If a person NEEDS it, they should be able to use it!!!

My friend had an anaphylactic reaction to the different chemo they tried and it was horrible!  They want to continue with it with massive amounts of steroids, she says no, enough is enough, they need to come up with something else or she's going to try for an oncologist in Portland, bad enough to drive over an hour away, but 3 to 3 1/2?!  That's rough.  This may be why my BP is up. 

8 hours ago, Gwenivere said:

I like Kill Bill, but twice in a few days was plenty.

I about spit out my coffee, this was so funny!  I hadn't even heard of that movie in YEARS!  How can they rerun it twice in such a short time!

8 hours ago, Gwenivere said:

My nurse this morning heard my white noise fan and said she couldn’t sleep with sound.

Does she sleep at work?  Or just commenting on how she can't sleep with white noise?  I have white noise, it's called my air filtration.  It's fine as long as it's not clanking, then I have to send it in to be worked on.  My fan is super quiet.

I try to take my phone off the hook but forget sometimes.  I hate spammers, esp. in the middle of the night!  They do not want to wake me up!!!  I think it's hard to sleep away from home with our own sounds/territory.  

 

[Kieron]

26 minutes ago, kayc said:

Does she sleep at work?  Or just commenting on how she can't sleep with white noise?

Given Gwen's reports of the care she is receiving there, I would suspect the former.  🙄