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My Sanity Needed Vents


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4 hours ago, Gwenivere said:

Made to feel I’m an oddity.

No one should make us feel any kind of way!  That's on them, not us.  Don't accept it.  Tell him when he makes you feel this you will let his words go as you don't need the negativity.  Judgment type statements. He'd be a strong person if he could survive a day in your shoes!

 

4 hours ago, Gwenivere said:

I remind myself panic disordeR is not something people deal with every day.

 

I know how that feels, I used to have those, horrible!  Feels like a heart attack, very scary.

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5 hours ago, Gwenivere said:

Made to feel I’m an oddity.  This whole experience is shredding imy self esteem and how ridiculous it is I am here not getting help I need but waiting to even know if it will happen.  It could take to close to the last of the month.  So I keep living here?  II can’t.keep doing this.   I’m feeling like I’m in withdrawal (

Gwen, my heart hoes out to you. There's nothing worse than having others completely in control of your life, and there's nothing you can do to change that. I do hope you'll be able to go home soon with all the necessary home care you need, or like Karen suggests, perhaps a different rehab centre where you'll be listened to more. 

Big hug to you. 

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I saw on the news that Ann Turner Cook has passed away.  She was the original Gerber baby.  I didn't know her except through emails, but she was my second cousin.  Our grandmothers were sisters. May she rest in peace.

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The Gerber baby iis an icon of our history.  I remember a news story that Gerber sent some incorrect packaged bathes to Africa women couldn’t read so they put pictures of the food.  These had writing and a big picture of the baby so they thought it was bottled baby!  
 

Thank you for your responses.  Unfortunately my insurance won’t pay for a different place,.  They’d have to be paying for this one for me to have a choice.  My choice right now is me paying or going home.  Period.  Have to wait while they reconsider.   The hardest is knowing either place is not any better than the other.  What’s a plus here is a minus there and vice versa.  It’s hard to tell the PA about how they’re words make me feel.  They don’t really say it in a way that be obviously quoted.  It’s the underlying attitude  that’s the problem.  What I’m allowing it to do to me.  Does that make sense?  Hard to describe.  
 

Restorative care came that i wasn’t expecting.  Had been down to get popcorn, but no movie because the Mariners were playing and nothing trumps baseball.  Went outside for a few minutes to get some air and. leave the birds some food.  Another resident gave me white chocolate pretzels and popcorn this morning.  I changed my dinner around.  Don’t want to try their tacos.  The tamale last night was awful.  I’m doing all this stuff when I want to work on my back.  What’s crazy is there won’t be enough time this month.  Plus it may not be fixable.  I keep thinking if i were smart id go home and save the money.  But moving and inability to do daily needs, how would i l live?   Then there is the possibility this is the end of an independent life.  Forever.  
 

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Gwen, I guess I meant if you end up paying for this yourself, you might as well be somewhere that is really helping you. I know....much easier said than done. I just want so badly for someone to listen to you and help. I'm sure you must feel so abandoned.

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I have no suggestions, but I care.

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Abandoned is a good word.  I feel I’ve lost everything.  Essentially, I have.   Family,  health, friends I traveled life with and desire to live.  Right now I have some money,  but it can be wiped out in a much shorter time than tdecades it took to build.  All i wanted was a few more years of independence before  I transition into being done.  It is very important to me to lose Melody naturally than re home her.  These kind of experiences deeply matter. 

Dee called because my email was so downer last night.  I cried and had to hang up.   Sometimes no one can help.  Then hassles feel  intolerable.  Like not needing oxygen would really help.  My thyroid med was increased and I feel awful.  It’s very stimulating.  Last thing I need feeling overly anxious.   I got to escape a short time at bingo with my fav other patient.  She insisted i take her winnings too.  That beings me up to $17. I was hoping I could get Dee and I a nice take out dinner when I’m forced home.  I have no idea if that will happen.  I know I’ll have to go home, but unsure  if plans will happen now.  Those kept me going. Not so much now.  
 

I wish I could figure out who to talk to about this.  Someone neutral but caring.  Making it even harder Is someone who can relate.  Caring can, in itself can skew a good look at this situation.  Too neutral and its too complicated and  prone to suggestions and standard platitudes.  My counselor is fantastic, but too close.  Dee loves me too much for this.  I cant have deep feelings for them either.  Another hitch, I don’t want to go thru a whole history.  Guess that’s on me to trim up to the  most important points.  

Not exactly a project i want, but i am tired of waking up wishing I didn’t exist.  So that’s for the mind, soul and heart.  Then i take on the non stop pain.  No one could live with this day in and out unless they were in hospice type pain.  A guy I’ve come to care much about here has stomach cancer, so he’s on morphine, but at times functional.  I saw this with Steve’.  Take care, my friends.  💕
 

 

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Wow, so much!  Even down to the guy that has stomach cancer...that's what my BIL died from.  His was from taking Nexium for years (good ole' USDA approved...no one warned him).  I'm lucky, I couldn't handle it, took myself off of it after two days.

I don't know who would be good to talk to about this, they should have someone there, but I know how that goes.  My sister was very lucky she had me, I see that, I can't imagine if she had no one as she wasn't capable of hounding insurance/doctors or dealing with all that.  I know the last place in the world she wanted to be was Marquis (rehab/nursing home), it was awful.  She wanted to die in her own home, so I'm thankful for that.  She wanted to go quickly in her sleep, again, lucky there.  But it doesn't FEEL lucky to those of us who were close to her (esp. me as I was in her life on a daily basis).  I know we dodged a bullet because of the progressive dementia, even then it was very bad at times, but still...I miss her.  I always will.

Living alone, always alone, it gets old.  James feels that even with his mom and brother as they don't meet that need in him.

I understand how hard it'd be to try to give history, I guess you start with a brief synopsis and then fill in the untold details bit by bit.  

I'm glad you got that brief respite yesterday and even your friend donating her bingo winnings, that's so sweet!  

I wasn't up to going to church yesterday, guess they can fire me, seriously, my back was out, my throat/tongue issue escalated greatly, BS up, exhausted from going to my son's and back the previous day, stomach hurt, just wasn't up to it.  I rested as much as I could.  Went and visited my neighbors across the street, I've been putting it off because of their aggressive dog (that bit me) but they put him out back while I was there.  Ken is not up to holding him back from me, he's awaiting surgery (back, for pain) 7/20, and not able to do much, you can see the pain in his eyes.  They're going to put something in him first temporarily, then permanently, to block the pain.  He's already been through the rest.  His wife is in her 50s and fit as an ox and she does the hard work around there.  She just rototilled their front yard and scattered it with wildflowers mixture, I can't wait to see it grow!  She has a greenhouse/garden and tends their chickens.

6 hours ago, Gwenivere said:

it can be wiped out in a much shorter time than tdecades it took to build.

Boy do I know this!  My IRA has taken a nosedive the last seven months.  They're going to make me start taking $ out this year.  Biden should suspend that until the market has a chance to recover.

 

6 hours ago, Gwenivere said:

All i wanted was a few more years of independence before  I transition into being done.

This is how I feel too.  I don't know the future but don't want to face it today.  You're being forced to.  I wish there was some way around this, esp. for us who are alone.

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I was able to have a text conversation with the one person who I felt understood me the best- Annette's sister- but even she doesn't understand me at all. She means well, but she seems to think that my problems with be solved by gainful employment. Most people think that if you're not working, you're just lazy. It's not that! I'm on disability because I needed to be. I spent two to three years fighting to get on it, with a lawyer, going to court...in Oklahoma where it's way harder than in California. I could not work, and Annette understood and did not want me to work. I finally had to get a call center job because Annette needed me to- it broke her heart because she felt it was up to her to be the provider because of my mental disability. My sister-in-law is a go-getter and hard worker and she cares, but I was just made to feel worthless and less than. I feel like a speak a foreign language that only Annette understood, my translator, and she got another assignment, so I'm stuck with no one who understands me-- no way to communicate. 

Every morning, I take a walk behind the mobile home park office, around the basketball court. I talk to Annette (she's certainly sick of my whining, but puts up with it).  There's a grassy playground, and when I was a kid (my Mom moved to the mobile park when I was 4) there was a slide and swing set. Not anymore. They'd be destroyed. I'm surprised they keep the grass green. I go out for my walk and a damn gang "tagger" graffitied the back wall of the office, the brick wall, the actual surface of the court itself. This idiot never got crayons when he was a kid. I can't even have the peace and contentment of my morning walk, when no one is around, without the modern world slapping me in the back of the head. I'm just tired of it all. Every night I hope I don't wake up in the morning. 

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13 hours ago, kayc said:

I don't know the future but don't want to face it today.  You're being forced to.  I wish there was some way around this, esp. for us who are alone.

Today added more stress.   Im always amazed how more can be found.  My shrink has decided my anxiety meds are too high and won’t OK his own doses to the PA here I think that is illegal and definitely unethical.   I talked with the PA and she said she is not reducing them lower than what I’m on now.   He went on and on about  my ‘despair' is the source of all my woes (duh) and he wants to do more with antidepressants  than the meds that have worked for decades.  He’ll not fill  my next refIlls the same is pretty obvious.  He didn’t want to hear about the cause.  Just his agenda and he’s definitely a power freak.  All my docs before him were wrong.  I’m wrong.  The PA here will be wrong.  Ive met some cold people and he’s right up there.

Dee came by with some things and a chicken burrito and salad from the community center.  The fish from here smells pretty good, but I want to try the other.  It’s like….real food!  Even a chunk of apple.  I had some from here this morning which wasn't very crisp.  
 

My insurance didn’t call as they promised.  I told them this was a trust issue.  Proved again i can’t.  This means calling Tuesday and i so hate having to do that.  That is one time killer I could do without.   I’d still have to go thru them to get verified, but at least I wouldn’t have to do the menu.  
 

Watching more reruns on TV.  Will dive into Netflix a little later.  Dee and I were talking how the days blend into each other in this loneliness.  My situation is different, but so many on their own and so much of , its one of my first questions.  Then it’s followed by our usual about being here and such.  The usual drill trying to grasp meaning where it’s evaporated.

 

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So the PA comes with the rehab?  What about your own doctor?  Can you get him to prescribe it?  Doesn't make sense to upset the applecart by changing what's been working for you!

I'm glad you have Dee to talk to, makes me miss my sister as we used to talk about everything.  I feel so alone and on my own now.  Even though she couldn't DO anything, it helped so much having emotional support.  And I miss doing little things for her.  Like cooking for her or bringing her takeout, doing her dishes, just little things like that.  It was a relationship.  I feel like I have none now.  :(  I can talk to George but with the time difference and schedules, it's like once every week or two.  I need someone in my life but no idea where/who...

Supposed to be in the 70s for three days then rain...naturally Jazzy will be gone to the coast with her folks for these days.  When she comes back, rain again.

I made an appt. for gastroenterologist as throat issue has it out for me and can't get in until Sept.  By the time I'd get a scope it'd be Dec. and snow, they won't schedule one tentatively so I can avoid that.  Uncooperative/uncaring, like most medical I see nowadays.  Not impressed with doctors anymore.  :(  They've changed over the years.  Everything is bureaucratic.  Forgive me if anyone is in medical...I have appreciation but feel letdown at the same time.  I'm from a different day and time.  When I worked for doctors we saw everyone same day, stayed late until all were seen, worked hard and CARED!  We talked to people in person, no voicemail.  WE dealt with the insurance, WE figured out their copays, WE arranged payments they could handle, WE found things for them!  Now when I'm old and need help, where is it?!!!  Not to be found.

More and more I feel this world is not my home and I'm longing for the next.  But I want to be here for Kodie the rest of his life, so I keep going, doing my best.  But it's hard sometimes...

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On 6/6/2022 at 6:11 AM, kayc said:

Living alone, always alone, it gets old.  James feels that even with his mom and brother as they don't meet that need in him.

This is why we can’t compare.  People that have others in their lives are seen as not  'alone' because of presence.   We know about that saying of being alone a crowd.  Sometimes I’m with people and don’t want to be.  Or not for long.  Mine’s a medical atmosphere tho.  I think that’s why I’ve come to like bingo.  It’s light and iI don’t have to get too involved.  I just cant do that much anymore.  Maybe if I ever f.eel better.  Id like to be social again.  Dee is like me I’m learning.  She gets anxious and wants to be alone.  I miss feeling a good balance.  

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6 hours ago, kayc said:

So the PA comes with the rehab?  What about your own doctor?  Can you get him to prescribe it?  Doesn't make sense to upset the applecart by changing what's been working for you!

Yes, everyplace has to have someone who can prescribe.  My doctor wouldn’t help with Xanax if his lor my life depended on it.  Thats why I found a shrink.  Docs are being scrutinized about prescribing it now that the SSRI's are the rage.  I agree changing things, especially now when I’m in very high stress, doesn’t make sense.  Very little around me does.  I didn’t even get a breakfast.  Some raisins and sliced apples even tho i had an order in.  This is an example of daily problems. While getting my shower, my aide didn’t make the bed, and it was stripped. My toilet wasn’t emptied.  Meds were late.  I’m now late for ice cream at activities.  I need to call insurance when i get back.  Apologized to my aide for being overly mean to him.  I could have made my point better with some caring I would have given myself.  He screwed up, but I lumped it in with other issues.  
 

On the phone with insurance.  Knew this would frustrate me.  As they all say, they get iI would feel abandoned.  I was using the wrong terminology.  It is a pre auth.  I think I verified it is in and being reviewed. I want to be notified if something goes wrong as time is running short.  Ive got 3 and a half weeks following the 14 day time frame. After all the things that went wrong today, this was the one that has me n the dark funk.  I knew it would when I dialed their number.  
 

I took a walk with my strength aide after session.  Wow, that was intense.  Had to rest a couple times.  She was unaware they wanted to send me home and retracted like the norm….shocked.  From here it's like the play's name….A Long Days Journey Into Night.  When that’s done, push the reset button.  What i really need is a snooze button til tonight’s bedtime.  
 

 


 

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3 hours ago, Gwenivere said:

Yes, everyplace has to have someone who can prescribe.  My doctor wouldn’t help with Xanax if his lor my life depended

I'm so sorry to hear that you have trouble getting your prescriptions, we probably have it easier over here. I was prescribed Xanax drops by my cardiologyst, who, after an ECG and other tests, examining results of blood tests, didn't find anything that could be causing my constant hypertension, but he noticed I was very anxious and nervous, told him I suffered from insonnia since losing my husband (I've always been anxious but my insonnia had obviously got worse losing my husband so suddenly). He also prescribed me two different pills for high blood pressure. I now just need to phone my doctor and ask for a repeat prescription and that's it. I remember asking the surgeon who implanted a pacemaker to my father last year, if we could give him a bit of Xanax to calm him down,  he said yes of course, just get your doctor to write a prescription. We have to pay for all these types of meds of course. It's not as if we're asking for morphine or any other 'over the top' drugs. 

Wishing you all the best Gwen, you're really putting up with so much lately, you just don't deserve this. We are all with you. 

 

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14 hours ago, Gwenivere said:

This is why we can’t compare.  People that have others in their lives are seen as not  'alone' because of presence.   We know about that saying of being alone a crowd.

I felt that way in my other marriages, they didn't love or care about me, George was the only one that ever did.  It's weird how you can be married to someone 23 years and feel "alone" in it...when they leave it feels like a relief because of the lack of controlling/stress, etc.  That's kind of sad when you think about it!  You are so right, no two situations are the same. ;)

3 hours ago, Gwenivere said:

On the phone with insurance.  Knew this would frustrate me.

I had one of those days too, phone calls and tech issues that were from hell to deal with, it just went on and on for hours.  I thought of you and the days you have, almost like groundhog day, over and over again, the same issues. :(

18 minutes ago, V. R. said:

We have to pay for all these types of meds of course

Yeah, here too.  But they're over-vigilant with certain types of Rxs, painkillers nearly impossible to get (even after surgery!), SSRIs...

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10 hours ago, kayc said:

had one of those days too, phone calls and tech issues that were from hell to deal with, it just went on and on for hours. 

This is the problem of comparing.  My situation is so different than his.  Also, if it were as simple as asking for an RX, I would have done that.  Thank you for your input and caring.

 

10 hours ago, kayc said:

I had one of those days too, phone calls and tech issues that were from hell to deal with, it just went on and on for hours. 

I’m sorry you had to experience that.  They call it customer service, but I dread every time I call.  When I get conflicting info I want to scream.  It’s amazing the time it eats up.  I’ll often get a sick feeling sometimes.  Just thinking about it twists my stomach.  
 

I got my labs back.  Thyroid is still very bad.  I didn't do well on the med increase.  I’m looking at my next dose of meds and their all things i wish I didn’t have to take., That would be so freeing.  I hate feeling every few hours now the need for them.  As I’ve written, this experience has made me feel like an addict.  It’s a horrid word.  To have my shrink tell me he’s now rethinking the anxiety meds and glad I’m on less was crushing.  He was happy.  I’ve never been addicted to opiates.  I trusted caregivers to avoid this.  So many others i know after surgery were off them in a month.  Im going on 6. I feel terrible about myself.  I so hate my anxiety meds (now) that were just a part of life.  My past doctors never made me feel like this.  They were encouraging.  They knew the other options too.

And now I’m stuck in this place.  Talked to the PA and she to my shrink.  I found out his plan is to change my meds.  I cannot even put into words How I could lose my mental care that works for me because he wants to experiment.   My choice is his way or he will probably be done with me.  I don’t know how I’m going to actually do what should be priority- the possible healing of my back.  I’m supposed to go back to upped thyroid meds too.  I’m becoming the opposite of the fatigue I should be feeling. The Xanax will hit me hard.  I’ll pull some out to prevent it.  My dilemma is the thyroid meds.  They really made me feel more hyped and dropping down I felt less anxious.  I read all I have written here and see there is nothing about why I’m here. Spinal surgery and I I’m being treated for depression, anxiety, thyroid and muscle strength.  I feel like I’m the only one that sees that.  They’ll check if I’m getting my meds and food.on time and correctly, but nothing about progress on my back.  That should be the main focus.  Not a peep.  
 

I hope this doesn’t happen to many people.  I wish it didn’t happen at all.  No person should ever be caught in this kind of web occupied by so many spiders.  The more you try and get free, the more ensnared you become.  You get so mixed up with other conditions from the stress.  Since nothing is happening on my main issue,  the others get to run rampant.
 

 

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Gwen, it's no wonder you can barely tell if you are coming or going, what with all the med changes. Your system must be totally confused. Don't beat yourself up about the pain meds. There's not a whole lot of choice when you're in severe pain. I know there is pain management help, but it usually happens down the road after you have healed.

Has PT for your back been completely stopped? Anyone with half a brain could see how necessary it is. They probably focus only on your other issues because it's an easy out for them. All they have to do is give you another pill.

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6 hours ago, Gwenivere said:

This is the problem of comparing.  My situation is so different than his.

His who?  I am not comparing.  I am telling you about MY day.  I could have explained further but didn't want to bore you.  I'd never compare my situation to yours, but dealing with medical people, insurance, bureaucracy, and tech issues are among my least favorite things, and esp. when this drags out on and on!  There is no customer service anymore.  I provided it for 45 years and now that I need it, it's gone.  It's a thing of the past.

I know someone who is 90, she doesn't take medicines.  I can't imagine.  And her son lives with her and takes care of the place for her.  I can't imagine that either.  I knew another who lived into her mid 90s, had never experienced pain.  I can't imagine that either...life sure isn't doled out equal and the same. :(

Honestly, I can't wait until you're free of that place, at least you could pick your own doctor. This one is unreal.

 

 

 

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13 hours ago, kayc said:

His who?  I am not comparing.  I am telling you about MY day.

I know.  This has become convoluted.  I think it began with James saying he’d take any relationship, even a bad one.  Then progressed to assumptions that they are good because of the presence of another person.  
 

18 hours ago, KarenK said:

Has PT for your back been completely stopped? Anyone with half a brain could see how necessary it is.

It’s been stopped since insurance cut me off at the end of February for being here and why I’m in this fight with them now I  didn’t know I could do back then.  The pain meds are a huge problem because  I shouldn’t be on them anymore.  Now I’m addicted and experiencing withdrawal when they lower them..  Im also having problems breathing that can be many sources. Pain, thyroid and horrid slouch all in the running.   Surgery was in January.  PT stopped in February.  I’m more than overdo for getting progress from it.  Thats why i feel a waste being here, but I can’t be at home even with Dee.  I don’t know if i can sit all day as I don’t have a hospital bed.  Sorry,  this is repetitive.   It’s easy for me to remember as I live it every day.  
 

Doctors aren’t the big problem except my shrink eventually.  It’s my insurance saying I’m fine.  Nothing could be further from the truth.  Now I’ve lost 3 months of care I needed at the time.  My retirement wouldn’t be in jeopardy.   I’m where I should be for what I need.  It’s getting it that is the problem.  I do what i can but need to move forward instead of this idea I’m dandy from Premera.  My doctors are absolutely opposed to my being sent home in this shape.  I don’t understand how an insurance company can ignore experts medical knowledge. 2 doctors.  I’ve almost fallen a few times from leaning too much which actually wasn’t very far.  They hired an outside agency to decide who never saw me.  If that’s what neutrality costs, it hurts a lot of people.  I sure didn’t want to be here this long.  I want to go home…..safely.

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I sure don't understand how your insurance works. Where does your Medicare stand in all of this? They should be your primary carrier. It seems your appeal should have been filed there first. I know they pay for 100 days in a rehab center, but have no idea how many PT visits they pay for. I thought Medicare was the same for everyone, but maybe it varies from state to state.

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Gwen, I don't want to be interfering, I have no medical qualifications, but I think it's outrageous that you were operated on in January and PT was stopped a month later, of course you're still in pain, you're right you shouldn't need painkillers anymore, but you absolutely require daily exercises, after all that's why you went to a rehab. You would have been perfectly capable of taking meds yourself, at home. Do they think you just went there for fun? I'm so sorry for you. A big hug. 

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7 hours ago, Gwenivere said:

I don’t understand how an insurance company can ignore experts medical knowledge.

Because they're all about $ and profit, not caring what the person already paid for and needs! :angry:

I'm not trying to convolute anything, Gwen, I just wanted to know who the "he" was you were referring to. ;)  I didn't know you meant James, he hasn't been on here for a few days. ;)

It seems nothing about your situation has been handled right, it's like they address things as they come (or not) rather than seeing the big picture unfolding.

Can you get a hospital bed in your home?  Maybe in your living room?  They did that for my MIL, also my dad only he never made it home from the hospital.

 

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Thank you for your caring, everyone.  I know Medicare pays for 100 days, it doesn’t mean they will.  As far as who does what when, I don’t.  I know Premera follows their guidelines.  I have no idea how the whole system works and totally burned out how often I’ve had to call about things finding out very little or conflicting info. Trying to keep this as simple as possible for me.  
 

Kay, I might be able to get a hospital bed, but I shouldn’t need one.   That’s  the whole point of PT. If I still need one, my logic says I don’t belong at home.  This is putting aside I don’t have room for it and a tray for my stuff.  
 

Got woken this morning by the resident across the hall in my room thinking I was his mother and touching me. Then he started cursing at me.  The aides took forever to get him out. I told the nurse, assuming she knew.  She didn’t and is filing an incident report which the aides should have done.  It was very uncomfortable.  Now my meds are late and I just want to scream.  Sent another message to my surgeon I’m running out of time here for anything he can do to get me help.  Push his pre auth.  Call anyone!  Also informed my endocrinologist about the med change they tried and how it’s complicated things more.  I took a walk to activities and talked to another resident who is hooked on her pain meds and wondering what she’s supposed to do if she is sent home.  Every time I come back to this room iI get very depressed. All the worries take hold.and I’m caught up in the complications.  I can’t escape the reality.  

They made homemade bread in activities today.  I usually miss it but got a  piece and it was the bottom, so too crusty and burned.  Not my day for luck.  I’m tired of today.  I’ll get a couple good times this weekend.  Popcorn Saturday and bingo Sunday.  Hopefully no early morning visitors again.  The guy that woke me up had never even looked at me before.  
 

Take care, everyone.  💕
 

 

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Hope the guy was young and handsome😄 Just kidding!!!! Seriously, they need to keep an eye on him. That must have been so scary for you.

I guess you'll just have to trust(there's that word again) that all the billing people have their ducks in a row. At least your Medicare and Premera statements will tell you what's going on.

Hope your weekend goes better.

HUGS!!!!

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Sounds like a not so good day.  

We used Home Health when I took care of mom in her home, they were wonderful.  IDK if they have it there but it might be worth looking into for when you go home.

If you can't use your bed it might be worth finding a way to fit a hospital bed in.  Nothing about this is easy.

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