My Sanity Needed Vents

[Gwenivere]

Friday night I couldn’t get out of pain all night.  Last night was better.  I think it was working with PT using bands for resistance on my legs.  I had 2 nights without deep sleep and that really messes one up combined with the med regimen.

I feel so much older here as I change into my night clothes and shut the blinds before 6. What I really want to do is cry.  An intense, no holding back, loud, screaming fit, curse any god, the universe, Steve, doctors, nature and anything (deserving it or not) pity and anger vent.  I’m so tired of feeling there’s no reason to be here anymore.  I don’t remember what it feels like to have any sense of belonging.  Day to day life that is fulfilling. 

I don’t know how to make something matter.  Not in this mess when I see the goals keep moving further away.  wrote the surgeon again saying no progress has been made on posture in months.  That is what is holding me back.  I’m told the leg band stuff is to strengthen things, but they’re causing sleeping pain.  

I've got to make the most of April here.  This is killing me financially.  Dee and I are going to go over what I would need at home and how I can get it.  She’ll do shopping, mail, help with meal prep.  I don’t want to have to be readmitted and do the packing and readmitted and start over with new people that know my routine.    There’s a lot to say people that know your routine and idiosyncrasies. 

Each day brings new fun.  I now have what might be a cold sore starting.  More to have possible treatment for.  Hoping it’s a pimple.  Was on the phone with my insurance for an almost $1000 bill for being moved from the hospital to here.  Should be $330.  Another fire to be solved.  Something was coded wrong and thank gawd I checked into it.  Fortunately my insurance is going to call them too.  Coding mistake.  Glad I called. 
 

Went to activities as usual.  Have to remind myself it’s for the exercise at night.  The place shuts down so early.  I frustrate myself at that darned puzzle.  So many people there during the day that have become friends from the nursing home section.  They’ve been really nice to me.  It’s just so lonely down there at night.  Time to watch some Netflix.  Hope I get a good bedtime nurse. I’m getting tired of tensing up about going to sleep.  

 

.

[KarenK]

Kudos to Will smith for defending his wife! Some so called comedians need to be smacked.

[kayc]

I watch very little tv and don't watch the academy awards, to me it seems such a different world than mine, I can't relate.

Gwen, I'm so glad you challenged that bill!  I hope they use it for a teachable moment to whomever coded it wrong so they don't keep making mistakes!  I did medical billing back in the day we had to memorize codes (can't remember them now) whereas nowadays with computers it's much easier, more like data entry but you have to understand the differences in the codes.  Wow on the difference in price to you!  Good catch.

And most just take what comes in the mail...

[Gwenivere]

I’m glad I caught it too.  Bad part is my insurance and I kept calling the number on the bill and couldn’t connect with a person, always VM.  I finally googled them and got a person. They are resubmitting the bill and said they should have when it first got denied, their mistake. So, Premera and I spent hours today trying to contact them.  Hopefully this will go thru smoothly.  I’m now angry they had the wrong phone number to have wasted so much of our time. I called Premera to let my rep know she didn’t need to call them again.  She has other things to solve.I run into the oddest problems.  I also had to call DHHS for my appeal to find out if I needed to send in the stack of paperwork.  They said hold onto it and they’d let me know, but should have them.  Another situation no one had any experience with.  
 

No sign of rehab as usual.  Time for another walk.  Had a painful nights sleep again.   I’ve had enough of a break from the leg exercises so I think it’s nerve pain.  The ANRP was here and no changes on meds except I can ask for the muscle relaxer if I want to try that again.  They keep talking about my surgeon and his take but that is weeks away.  I can also talk to the virtual shrink which is a waste.  You get about 15 minutes and they see dozens of people in these places.  Can’t build anything on that.  I haven’t even called my own.  They focus more on meds anyway.  
 

Today starts as a shower day.  Don’t know how walks will go.  I don’t know if they are actually getting harder or I’m just perceiving them that why because I’m so tired.  Got a message from the surgeon's office about a cardiac walker.  Not cheap.    More upright and wheeled, but now my question is…..isn’t the goal (still) to not need one?   Especially my arms carrying the weight.  The picture shows someone with a much smaller slouch standing and it puts your arms leaning on 'arms' in front of you.  Never saw one on the street or stores.  Couldn’t get it in and out.  This makes me wonder if they have already settled I won’t walk freely again.  I’d take using a walker if I can transport it myself.  I’m nowhere near that nor getting any rehab for it.  I don’t see the surgeon in person for 2 weeks and 2 weeks after that I can’t afford to stay here.  I don’t know how others handle these frustrations.  
 

I don’t know how to make the most of these costly days that are slipping by.  They see me shuffling around here but don’t do anything that I feel is preparing me.  All I can hope at this point is as pain free a night as possible.  Have to check in with Dee and hope today goes better.  Hasn’t worked so far, but maybe something good will happen.  My nightly, closest to positive I get.  Unconsciousness is my fav thing for now.  We’re getting rain and gloom.  Typical for here.  Hope everyone is OK.  💕
 

 

[V. R.]

Have a good night's sleep Gwen. 

❤️

[kayc]

Gwen, you are making strides with the insurance!  I wish they would DO something about the limited time you're paying to be there, they shouldn't be skipping your rehab, etc!  (Nothing you don't know)  It is THIS about "the system" that I hate.  I posted the comic listed here a couple of days ago and got in trouble with the diabetic group, everyone calling for my head, had to apologize, they aren't very forgiving.

My sister died yesterday morning.  Didn't get to sit down until 10 pm (I'm usually sleeping att 8), didn't sleep much.  People bombarded me yesterday!  Went and cleaned out her refrigerator and took out her garbage.  Her best friend discovered them removing her body (Medic Alert triggered but they told me NOTHING!...they always have in the past!  Said hippa laws...)  You shouldn't get a robotic "Medic Alert" call with NO INFORMATION ON IT, no one you can talk to or find out anything from!  No way to learn of a death.  Her poor friend, I'm going to call her this morning.  She is like a sister to Peggy.  

Her 1995 will was on the table, she never got her revised one done.  I'm named executor, I'm not up to the task, nor am I up to cleaning out the place with these hands.  I will have the family come and take the mementos they want and we will spread their ashes, she's at the mortuary (sheriff got to pick the one, they wouldn't leave it to the family even though I was her contact!), will have to pay for cremation, no one is on her bank account, no one is POA.  I took her will for safe keeping.  The sheriff went through EVERYTHING in her house!  He didn't come up to my house to notify me until 3:00 pm, it was 9:30 am when she died!  By then, I'd been on the phone notifying people all day.  I need to call her friends, hasn't been time, my little sister had it all over FB yesterday while Polly and I were dealing with things on the phone...

[Kieron]

omigosh, Kay.    It's one thing after another.

6 minutes ago, kayc said:

  The sheriff went through EVERYTHING in her house!  He didn't come up to my house to notify me until 3:00 pm, it was 9:30 am when she died! 

That seems... inappropriate.  Out of line, on all sorts of levels.  😦  I'm really sorry to hear this, all of it.  I just don't understand people's behavior...

[kayc]

He said they had to.  I've shown my kids where I keep my $, I hope no one goes through my place but if they do, I wish them luck!  
The back door is unlocked, the lock doesn't work.  I may try again later...not today.

[V. R.]

Deeply sorry, Kay. My thoughts are with you. 

Enza

 

[Widow2015]

kayc: I am so sorry to read about the loss of your sister.  Take care.  Dee

[brat#2]

Kay, you are in my thoughts and prayers. Joyce

[MartyT]

From all of us, dear Kay ~ 

[Gwenivere]

I’m sorry about Peggy, Kay.  I know it wasn’t totally unexpected, but you still lost someone you love.  

Are you obligated to be the POA?  Is there someone else more up to the work that is?  I don’t understand her bank account not included in her effects.  Nothing comes out of my guys pocket. As far as I know, he has access to everything.  I don’t care about where I’m cremated.  I have no one to take them either.  They can just get rid of them.  

[KarenK]

Kay, I'm so sorry for your loss. Sending peace for your heart.

[Gwenivere]

Started today with a new nurse with very late meds and mistakes.  Talked to the director of nursing as this has been a problem for about a week now.  She’s pulled. all the meds that are generic that I brought in my brand ones for.  2 are expired from the pharmacy rule of one year.  One is my antidepressant that costs a fortune that I got a stash of when it was cheaper so now they’re on me about it.  This is nuts.  I have a lot from when they were cheaper and they work fine.  They’re been giving me mine since January.  I react badly to generic AD's.  Dee is going to smuggle more of mine in Wednesday. 

Rehab, or it’s substitute, came so I got leg exercises.  I had just gotten some good news I can have some limited real PT and OT back then got hit with the med problem.   I’m so fed up I sent Dee a message to come rescue me.  It was a joke, but one that got lost.  Now I really wish I could be rescued.  Wow, I take an expired AD and it works!  I don’t know how I’ll handle the morning with a generic.  PT assembled a cardiac walker which did not work at all because it was a drastic change in posture rather than working up to it.  We talked about goals for April, mine being to walk in my home with less assistance and picking up there on stairs, doing meals and hygiene.  Dee can help a lot, but I don’t want her involved with showers.  The aide here said I need too much help and I have no grab rails.  
 

I wasted over an hour with insurance about my Synthroid which is also expired.  Luckily some just came so Dee can bring those.  I feel so bad interrupting her day for this craziness.  She had been at my house for some alone time to read, not digging thru my meds.  Thursday starts 4 weeks to get done what I can til I switch to home health.  I don’t want to waste time here on stairs, rough terrain like to the mailbox til I get more stamina and hopefully more upright standing in.  
 

I'll have to call in the morning to see if the shower aide is in.  I usually go to bingo, but don’t want to miss any PT.   They set up a cardiac walker and I can’t use it because it’s too much a change between my slouch now to being upright.  Need to work up to it.  My priority is just being able to walk around my house and take showers with home health, graduate to stairs, outside terrain, driving, etc. I’ve got 4 weeks to make the most of the time I’m paying for.  I don’t know if I can sleep in my bed or sit in the living room chair for the day.  It’s not long lasting social here, but human contact.  I haven’t forgotten the long days with no people at all.  I hope this works because the thought of packing AGAIN is too much.  Plus that gets it closer to a year and if I’m this bad then, I’d say I’ll have lost the war.  😢

[kayc]

17 hours ago, Gwenivere said:

I’m sorry about Peggy, Kay.  I know it wasn’t totally unexpected, but you still lost someone you love.  

Are you obligated to be the POA?  Is there someone else more up to the work that is?  I don’t understand her bank account not included in her effects.  Nothing comes out of my guys pocket. As far as I know, he has access to everything.  I don’t care about where I’m cremated.  I have no one to take them either.  They can just get rid of them.  

My brother is going to be the Executor, there is no POA so I hope that will allow him access to pay the bills.  He lives 1 1/2 hours away so I'll have to get everything to him.  I'm worried about paying her M/C on time as she has a lot of her bills on autopay and I don't want it cut off!  We need the electricity!

Cremation costs vary greatly.  I liked the place we used for Bert, Major's hasn't told us any prices...

I'm exhausted.  Kodie has been a real trooper!  He has to know something's up and be bewildered about Peggy not being there.  I keep thinking of things I want to tell her, we talked every day!  She's been a huge part of my life.

Her neighbor said the lock on the back door hasn't worked in years.  She had a locksmith up a few days ago and didn't have them replace it?  It cost $200 for them to come up!

[kayc]

6 hours ago, Gwenivere said:

Dee is going to smuggle more of mine in Wednesday. 

How do you hide anything in there?  Seems they're invasive but not efficient, bad combination.

The church wants to cater a meal to our family when they come but Polly is too afraid of Covid.  Oh good grief.  She's eaten at restaurants, what's the difference?  It won't be the whole church, just providing food!  They'd mask up if she wants.  Sigh...

[Kieron]

1 hour ago, kayc said:

Seems they're invasive but not efficient, bad combination

Not unlike that sheriff you mentioned.... poking around in your sister's place and then taking 6+ hours to notify you.  🙄

[kayc]

We've talked about grey hairs, missing teeth, everything!  Thought you'd enjoy this...

[KarenK]

Gwen, it may be a legal issue for them to distribute expired meds(even though they are yours), not so much whether they work or not.

Maybe you can try the new walker for short periods. It may be the key to becoming more upright. Good luck with it.

[Gwenivere]

On 3/30/2022 at 5:09 AM, kayc said:

How do you hide anything in there?  Seems they're invasive but not efficient, bad combination.  

I’ve learned how to live in a prison of sorts.  It’s an odd feeling like you’re guilty. You get worried and find ways to stash things you might need. The trick is not take theirs.  It’s crazy having to do this.  Been taking mine since I went into the hospital!   Makes me feel uncomfortable.  But so does taking a med I have before and knowing it doesn’t work well. 
 

Got my shower, leg exercises, short talk about my expired meds in just as Dee arrived.  I didn’t like hiding my meds, but they are in a mint tin in my drawer.  Law states my possessions cannot be searched unless they suspect I have illegal drugs.  Not a problem there.  Dee took my appeal to the government to my insurance denial to mail.  I hate getting her during the week as so many people want to see her too.  She’s been hiding at my house more for the alone time away from Robin which is getting worse.  I keep reminding her she can stay as long as she wants.  
 

I've decided to stay another month now that I have PT & OT back.  This will allow time to focus on posture more as well as strength.  Can get things set up for when I get home, ready to go.  The less calls I have to make the better.  I have so much to relearn about my TV, DVR, how I have things organized where I sit when I’m awake. Get used to my alarms again and reset them.  
 

Time is slipping away again.  I’m going to try counseling today.  I just hope I’m making the right decision stying here.  I need to have a serious discussion with PT.  As ridiculous as it may sound, the wound and, more importantly, taking a shower are what I have to be able to do not having the safety set up here.  

 

 

[kayc]

I feel you will be better off in charge of your own life at home, with people to help with certain tasks, like showers, meals, laundry.  Maybe you can find a caregiver part time, Peggy FINALLY got a young gal a month ago who was a godsend, she did a lot of cleaning, she'd run errands, drive her, anything she wanted and was pleasant/helpful.  I can't believe how much she got done, when Beverly did nothing but bilk her.
I'm glad you finally have your PT and OT back!  Did they ever say why they hadn't been coming?

I sleep in my loveseat recliner, supports my back and breathing better and more comfortable than flat.  Is that a possibility?  What about one that has an assist?

 

[Gwenivere]

I will have to have a caregiver whenever I get home.  I’m more wondering about this month.  My PT was stopped when I was placed on restorative care which they do on self pay.  PT is billed separately and they know insurance won’t pay if they won’t pay for the room.  Guess it’s very expensive, but then, what isn’t regarding anything medical. I got some approved thru Medicare part B.  That took a month.  Not as many hours.  I want to focus on posture (getting some) and being able to stand to do simple things.  Showers are going to be the hardest thing.  I’m torn on staying here, but know at home would be almost impossible.
 

My scheduled appointment at the surgeons is telemed.  I’m really torn on that.  I’d like to go in so he could really see how bad this has gotten but it’s so big an endeavor, especially from rehab by distance.  It’s close to house.  Either way it involves the car and oxygen.  Dee said I had a different attitude last time.  I was ready to go and did well at first when I got home and appointments. 
 

Had counseling.  Not worth it yet.  I can do the same thing here.  Plus I can take breaks and get up.  PT and wound care done. Handful of pain meds swallowed.  I spent time looking up contractors to install a walk in shower.  I’m hoping I can get this done before I get home.  Dee can let one in to see it.  I feel like it will be like scraping a very low PB jar for the funds.  Another way getting older gets us.  It’s bad enough it wrecks our bodies, but then make us pay for ways to live with it?  Ain’t life grand?  😵‍💫

Now my insurance has denied refills on my Xanax from the doctor in rehab.  It’s time to be refilled anyway, no matter where I am.  It makes no sense.  I have an infilled refill.  I called Dee to bring my last one up here.  That’s going to be her 3rd trip here, only one was socially motivated.  Last time was the expired AD.  I didn’t dare order it online as that would mess up getting it locally.  Good thing I have a stash.  Had a run in with a nurse as well.  Now everything is going to be out of sync unless I handle this carefully.  Once Dee gets my other refill here, I’ll order online. 
 

Time to try and sleep.  I just know today is going to be complicated and I know a massive headache to deal with.  
 

Hope Marg is OK.  I don’t know if she’s in the path of those horrid storms.  💕 to all.

 

 

[kayc]

I just heard back from Marg, she is okay, that's what I was concerned about too.  So glad she's safe.

I don't know about WA but in OR when you get down to $2,000 you can stay in your home and they will provide you with a caregiver so you can stay in your home.  Used to be Lyons, etc. would help with things you need, ramps, rails, etc, seems someone could help with putting in a walk in shower.  Peggy has a huge seat in hers, no idea if anyone would want it, kind of big.  My shower is tiny.  
I guess we count our blessings, my hands are in pain and not much strength anymore but at least I have my back so far.  Peggy was very disabled but at least she got to spend out her days at home and had help when she needed it.  She would have been 78 on April 16th.

[Gwenivere]

Thanks for checking in with Marg and letting us know.  Weather is crazy this year.  It’s quite warm today, but foot of snow predicted in mountains which means flooding.  
 

Been on the phone, except for one walk, for 4 hours.  I frustrate myself to stay awake.  Feeling more sick than usual after breakfast.  Legs really painful.  Thought Dee might have to bring meds in because they ran out and insurance turned it down even tho I have a refill.  That got fixed but my mail or$er is canceled.  Even ones I didn’t order.  Ambulance transport being rebilled  hopefully correctly as it’s 3 times higher than than it should be.  Need to call Apple as my keyboard is too sensitive.  Have no idea if I see rehab.  
 

I'm getting so boring to talk to.  I feel for Dee and our check ins at night.  The best joke I can make is I need to cut back on my daily overfilled schedule to get some things to talk about besides the fires that keep popping up.  I wonder how Steve would handle this long of being stuck.  Even with his huge surgeries, it was only a couple of weeks.  He was never confined at home either.  Actually, I know he’d be going nuts.  I remember when I had to do all the driving and how he disliked that.  Seems loss of freedom is the hardest to take.