My Sanity Needed Vents

[Gwenivere]

Another day.  Another wondering why I’m here.  AC already running so LR cut off.  I’m in my usual what do I do phase.  I don’t know who to call as I’ve done them all.  Biggest being the doc about the pain. How can I at least ease it?  I noticed last night when I took my med I actually feel uncomfortable.  
 

Isolation is a cruel torture.  Even when we go out alone, we are with others.  You can see them, interact if you want, but most you see you are not alone.  I see how  I  change when.even someone medical that comes by.  People say they need to get away, but they go out in the world.  Dee doesn’t really help that as I have no choice.       She goes out.for alone time, but she can always change her mind.  I know that’s why I’ve gotten worse since leaving rehab.  No people around even if unexpected.  When I look at the rest of my day, I see 16 hours  til I go to sleep.  The TV on, don’t get fully dressed.  I know no one is thinking of me unless it’s something for revenue or waiting for me to make a decision on medical stuff.  It’s a crazy analogy, crazy person here, but even cons get 3 times a day with other people.  It wasn’t maddening when I could go out too.  Talking on the phone doesn’t do it for me.  I listen to all Dee does while she is gone.  She brings us home fun stuff.  Wish I could hunt around and find new things.  Anyway, my point is you have more options than realized at the time.  
 

Gonna be hot and terribly painful today.  Why do I even bother typing that?  Have my hospital bag set to go today.  We decided going by ambulance will get me in faster if I do.  I can’t keep just calling the docs.  
 

 

[V. R.]

I have no words to say how sorry I am for you, Gwen. You seem to feel worse than you did before your surgery, this is so unfair. I won't say I understand, as we all know here, only others who have gone through the same, can relate to how you're feeling right now, but we are all here to listen to you. I don't know how it works in your health system, but a patient dismissed from hospital/rehab  who has not acquired full physical movement yet, should be entitled to at least 3/4 sessions a week of home PT. I'm sorry you're still having difficulty getting all the help you need. 

A hug to you, take care. 

 

[kayc]

You are very right about the isolation, most of us have a choice whether to go out or not (my sister didn't). Peggy was more ambulatory than you but fell a lot, it was a constant concern, had she lived, she would have fallen and ended up in the hospital/rehab and I wouldn't be able to get her out this time.  She was planning a trip to the coast with friends, apparently they didn't grasp her situation.  She fell last year when she went.  I see that her death was a mercy to her and when it happened, but it still doesn't take away from the fact I miss her each and every day and wish things could be different, for her, for you, for everyone who suffers.

Kodie is my salvation, and you've had even that robbed from you.  I wish so much you could have a better outcome.  I hope for something/anything bright in your day, any kind of positive.    Love you and thinking of you, Gwen.

[Gwenivere]

Thank you all.  His isn’t looking like a situation PT can fix.  There’s too much other stuff.  Now the not being able to breathe, walk without pan, heart pounding, eating difficult for swallows, the bloating unlivable anxiety.   I’m sitting here scared to dial those 3 little numbers.  
 

Am sitting in the ambulance bay as there are no rooms.  Smart EMT got my wifi going.  Ive done it before, but never so stressed.  This is super uncomfortable. The FD medics didn’t think they’d be able to do anything for me and I think they’re right.   There are other ambulances here that could be waiting for rooms too.  I had some peanut butter and feel like I need the bathroom. I can live without these experiences.  AC freezes, burning up without.   I seem to keep finding the nightmares.  I guess what I want to know is if my heart is OK.  The bloating is causing so many problems.  I’m tempted to just go home.  
 

Inside now.  Just waiting for test results and Dee to come get me.  Just getting a muscle relaxer and suggestions for PT.  Just want to know test result's. Doc thinks the bloating is the pain meds which makes sense.  Now I have to deal with Dee as she is flipping out.  Too close to have losing her other friend.  I hope I can calm her down.  This is weird I’m more stressed out by her than the huge hassle this is.  At least I know what to expect for this kind of decision in the future. Great!  Had to redo blood!  Now I’m getting very anxious to get out of here.  So much to do to settle in at home.  Got absolutely no exercise today.  Getting stressed out more about Dee than this.  
 

Dee had a meltdown last night and it was very difficult to handle.  I have some very strong concerns.  The actual ER experience was about what I expected.  Nothing they could do but check things checked before.  I’ll see what PT says today.  I had to do the ER for some assurance.  Now it’s ack to the surgeon about how bad this is getting.  I’m on the hunt for my purse as I took my ID but not it.  Can’t have gone far.  This is when I wish ER's could help me like they used to.  Going to have to see if I can handle a shower Friday. Might be awhile til another.  
 

This week has been hell.  Still more to go.  I’m also worried how it will go.  I’ve never seen Dee so strange.  I’m really worried if she will let me sleep.
 

[kayc]

OMG, not what you need on top of all you are dealing with...is she upset over your taking an ambulance to the ER?  What has her so upset?  Tell her you need her calm when you're dealing with a crisis.  She can't allow herself to do that!  Not when it concerns you.  She must feel at breaking point on top of her grief.

Did you find your purse at home?

I hope you got some sleep!

I woke up a little after 2 am, just under seven hours sleep.  I couldn't keep my eyes open last night!  I finally gave up fighting it.  Kodie is still sleepiing.

Still in the heat wave.  

Gwen, doesn't your A/C have a temperature setting?  I have to adjust mine to higher than I want it in the house or it does the same.  Like I set it for 77 if I want it 72.  It seems to run regardless of what temperature it is if I turn it on!  So I do a manual shut off when I don't need it.  Thankfully I have a remote.

[Gwenivere]

Dee got drunk last night.  She is an alcoholic and an ugly one.  I was stunned how cruel she could be verbally.  She was more than humble this morning and already left as we decided to talk later.

We had our talk and my biggest question was if she meant  things she said.   She said no. She’s had some horrid experiences, but still no excuse.  I kept it as simple as possible, but said what I needed to.  No bringing up details.  I don’t now how this will go forward..  I know it’s the grief of losing her friend and I was in the ER.  She’s gone 3 years.  Maybe I’m nuts, but I want to give her another chance.

I feel sick and the mail brought another large bill from rehab.  PT is coming by at 2 and I don’t care with this other stuff.  Friday a nurse and shower aide are coming.  Now I have to hire my own.  Insurance paid for the transition.  I pay for help now.  Have to hire a couple people for hygiene and PT.  Got to get thru today being discharged and hire new people on my dime.  I might be able to get some prescribed. A challenge for another day.

[KarenK]

Gwen, this is another resource you might check for assistance...Area Agency On Aging. Have you heard anything about your doctors attempt to have Medicare pay something?

Please be careful! Living with a mean drunk is frightening and dangerous. They are unpredictable. I hope she can overcome this.

[kayc]

OMG, my first inclination is she can't be there if she's going to drink, unacceptable.  Wow, you haven't even been home that long (although I'm sure it feels it).  

Good luck with the nurse and hygienist...I get the hygienist but why the nurse if you have to pay for it?

Oh Gwen, it seems to go from bad to worse, holding you in prayer.  

[Gwenivere]

I am having a hard time with the episode with Dee.  I’ve never  been the target of such a thing. I'm trying to unhear what I can’t. We’ve had one day to try and get back to how things were.  It’s going to take time.  

I already feel overwhelmed today with a nurse coming with the bath aide.   I’d like cancel it, but I don’t know how long it will take to find another.  I’m in my early day overwhelmed mood.  I’ve made no progress cutting the pain meds.  I’m officially out of insurance covered home health.so next week will be finding help.  The nurse offered no more help than they ever have.  Assisted living, group homes, blah blah.  The thing is I know that is the inevitable.  I left another message for my doc if it’s even possible i I’ll ever walk without a walker or less pain.  Those never answered messages until an actual appointment which isn’t till the 15th.  
 

My anxiety is so far out of control.  This week was way too much.  Add in the ER.  I need to schedule a counseling session.  In big letters on my list this weekend.  She doesn’t know about these problems.  Can hardly walk tonight.  It’s becoming concerning pain where my my torso is always bent over.  I can even feel laying down what a deformed torso I have laying down.  Just gets me I walked into  that hospital and this is the result.

[kayc]

It makes me wonder if they did something amiss in the surgery.  Surely this wasn't the intended outcome!   My heart is with you as you figure out what is next with nurses, etc.

I have my consultation Tuesday morning, I am very nervous about what she'll say.  And if it's cancer...

I just don't know.  I don't feel up to what Iris has gone through this year.  She had lots of help with family etc.  I do not have that.

Her husband still cooks for her!  Keto.  He does the yard work, maintenance.  I don't have that.  I don't even have anyone to talk to.

Sometimes you can't unhear what you hear.  I want to cancel but it's been nearly two years with no answers so I feel I need to make myself go.  And wouldn't you know it's in the worst possible place to find where you're going...Riverbend.  I don't know where I'm going, how to find the place.

 

[Gwenivere]

I woke up way too early realizing I’m really on my own now.  The home health may have not been perfect, but I  had someone to call.  Of course it would be a holiday weekend.  Have to wait an extra day trying to find another agency.  It’s the start of another long day and also a weekend so even the isolation feels worse as I cant do anything productive like phone  calls.  Yellowstone is running a marathon, lots of family and romance.  Dee’s out to wherever.  I called my counselor as I’ve been so anxious around Dee.  Jinny said my reaction was normal and to tell her it’s going to take time to recover from the trauma.  Thinking of doing that makes me stressed.  Had to message my doc for more  pain killers and possibly a nurse til I can hire one.  The stress of this week has me feeling worse.  I’m in so much pain and on edge. I diid tell Dee this is going to take me time to recover from.  Was a rough day from bad sleeping. I’m hoping I’m not losing that.  Had to write in  to my more pain meds and hope I can handle going lower.  Going to try and relax and hope i get some much needed sleep.  Back was bent more all day by tasks I chose.  Almost fell moving from the couch back to my chair after movie time.  Really challenging days.

Hpe things are better for everyone.  💕

[kayc]

You posted this at 2:30 am but it's kind of like it's written in the daytime?  Has me confused.  Kodie woke me up barking at something outside, then hours later was cleaning himself, woke me up again.  Tried for an hour to go back to sleep, nope!  So up it is, early start to the day again.  I hope you've heard from Dee by now.  

Your days sound awful, I wish there was something for you to look forward to besides just surviving the pain.

 

[KarenK]

Well, the light switch in my hallway bathroom finally bit the dust. Gee, it only lasted 70 years.  lol. Glad it broke in the "on" position. Would be like a cave without lights. I sure can't afford an electrician and I know my son won't mess with electricity.

[kayc]

My son has an electrical engineering degree and it's nothing for him to switch them out....the hard part is getting him to come here.

Usually, a broken or failing light switch isn't a fire hazard itself, but it can overheat if the contacts or the switch wear down. Sometimes a bad light switch can cause other components on the circuit, such as a bulb, to become a fire hazard by causing an intermittent current.

[Gwenivere]

These are the kind of things I leaned on Steve’ for.  They aren’t very hard  but not my thing.  I miss Having a built in handyman between him and neighbors.  
 

I don’t know what’s going to happen with Dee.  She’s so stressed out and. I’m not sure she want to stay here.  It’ has been months we’ve meant to have her moved in, but impossible with me gone.  There’s also her van she lived in she wants to keep which II understand.  It’s a whole different mindset being thru that. If she can get dependable, it can an be in the driveway.  It’s where she was living before and it’s gotten quite dramatic as that woman wants her back.  We really cant go further til this is solved.  I admit, this scares me.  I’m dealing with a background that is alien to me and I would miss her so much.  The. thought of hiring someone as a companion is so cold.  She brought up so much last night I told her she needs to make a decision as I’m not going to keep analyzing everything.  It’s time to move  in a direction

L'm getting tired of feeling sick.  I thought it was all physical but now I see how the emotional .side has become enormous.  Being dropped by home health is tough.  More and more things that make me feel discarded.  It’s hard to keep fighting for yourself.  Why can’t things be consistent for longer than a few months like they were with or partners?  It wasn’t lonely.  It wasn’t a battle for purpose.  The only people I know that don’t feel that never had it.  They are who II envy now. 

I’m so sad right now.  Life is so messed up.  I can’t do anything to create experiences and memories.  I know that is one huge change on the plans of me coming home.  I don’t have anything to offer anyone.  That feels terrible.  😰
 

 

 

[KarenK]

So true about being nice to have a handyman, Gwen. Ron could do most anything. He had grown up helping his dad build their home from the ground up. He also taught Robert a lot of things. Guess I was wrong about him and electricity. He said he would change the light switch.

Is it possible to keep the same home health? Does it make a difference whether it's you or insurance paying them. At least they're familiar with your case.

Maybe Dee is just not the person you thought she was and comes with too much baggage. I hope you're able to work it out soon.

[kayc]

Wow, I'm glad you told her that Gwen.  She needs to let you know so you can figure out your next step/s.

The Cedar Creek Fire I got an alert that the winds shifted SW, TOWARDS US!  NOT GOOD!  I have nowhere to go and tomorrow I have my doctor's appt on the other side of Spfd and planned to leave Kodie at home, this is the appt I've waited for two years about my throat/tongue!  Am hoping I can leave Kodie at my neighbors but won't know until I see them today.

[Gwenivere]

I’m not sure what to make-of today.  It’s my first in this environment.   Last year I was in the hospital for my first surgery.  Just starting this crazy road.  Not as  burned out.  I’ve never been alone at night here at this time.   I’ve never been without Mel.  I can say it’s very depressing.  Adds more to it being over a year now without her.it’s the first time I’m in this house totally alone.  The parakeets are here but they aren’t interactive companions.  Dee is out to dInner so I’m not used to that either.  not making much of an effort to try sitting up straight.  It hurts a little less to do what is worse.  Trying to get down more saltines and potato chips was difficult.  I tried to figure out the reminders of how long the rest of my investments would last at this snails place of recovery would last,, but I kept getting outsmarted by the calculator.  Brains  too scrambled.  So frustrating when you feel useless anyway.

We had a good evening talking and watching a new show.  Had trouble with my oxygen tubing when I first woke up and so zoned out.  Getting back to sleep was hard.  Then I was out il the alarm dreading actually having to get up for real..  I have to find a nurse, PT and  bath aide.  Gotta get something going this week.  I don’t have a list for that.  The one I have iis more for companionship.  I need medically licensed people.  Friday the housekeeper is coming and I have counseling.  That’s going to be hard to combine.  Privacy and noise.  
 

So hard knowing your day is going to be horrible and you have to do it.  That it’s no use calling your doctor.  Making phone calls you’ll hate.

.

[kayc]

Having to make the trip in to the docttor, somewhere in or near hospital, vast area, will head down and call once I'm in the parking lot.  Tried to find a map of it, but nothing and of course they've been closed a few days.  I should have tried Friday butt didn't think of it until it was too late.

Woke up at 2, couldn't get back to sleep, gave up finally and got up, BS at 127 from the stress.  Ex-SIL called FIVE times yesterday after I'd told her I'm not up to it...I took the phone off the hook.  She wants to talk 1 1/2-2 hours about my ex and his wife...NO!!!  This doesn't help the stress any.  I'm worried about the C word.  I have no support, I'm on my own.  It's frightening.

Gwen, I'm sorry this is all you have to look forward to, survival.  I'm feeling it too, also worried about the constraints the Forestry wants to put on us, wanting us to cut a 50 ft. swath around all of our buildings.  It would cost thousands, take my IRA, everything!  And render my property valueless.  It's my worst nightmare.  Can't do this.  I know someone who did, she is young, has a husband that is able bodied and $ galore.  She couldn't get homeowners insurance without it.  If my house were paid off it wouldn't be this kind of pressure but the bank requires it.

Okay, enough woes for one day.  I don't know how to stop my brain from going over things.  I'm getting too old/tired to figure things out.  Sometimes I want to take Kodie and leave but can't afford to.

I'm so scared of what my throat/tongue thing is...if it's cancer, I'm screwed, no one there for me like Iris had.

[KarenK]

Kay, thinking of you and hoping for the best.

[Gwenivere]

I’m totally lost on my posts.  I turn off my iPod every night and often don’t know if it’s coming up to date here.  Ive just spent a couple of hours trying to connect with home health agencies.  Should be hearing more Wednesday.  1 got so frustrated just calling 2 places all afternoon.  Missed  calls, phone tag.  Should e getting somme deeper call backs today.  Biggest problem iid finding a nurse.  Even bigger is any care. at home I need I have to pay for.  Insurance has bowed out.  It really has become a crime the care that country has.  It’s more about money than health.

Eery night I go to bed feelI just killed time.  That’s accurate too.  I don’t know how I’m ever going to find a way to fee this is worth it.  Dreading creating a care system.  I’d like to be looking up interesting things.  Daytime TV II never needed is.a challenge. Dee and I going to quit the world news  we watched with David Muir because as it’s overly depressing. We catch the big stories as it is.  We’re watching an HBO series we are hooked on, but never would recommend it as it’s too dark and we want to know answers to the plot. Waiting on 1883 for some good entertainment.  Never thought I’d see TV would be see needed.  I cant concentrate right now on reading with so much unsettled.  
 

Getting some helpful PT and  eventually off the pain meds would be so wonderful.  It feels too much to wish for.  I hope not.  I like laughing and don’t remember it.

[kayc]

Sometiimes I feel we'd be better off without a decent income.  The state would provide housing, care, food, medical, everything we need.  I wouldn't have to shovel snow or build fires.  I wouldn't have to worry about the Dept. of Forestry threatening me and my neighbors over our trees.  You wouldn't be looking for a nurse.  

I quit watching the news a couple of months ago.  I'd watched it nightly every evening for as many years as you can count!  I do not miss it.  Today they are still haggling over the same thing, using scare tactics to control us.  You don't think so?  Think again!  Thiink about it, the whole world is run on it!  And I've never seen it worse.  Between Covid, politics, everything...more shootings, the stress it all causes inside of us...all about stuff we cannot change.  Now they want to mandate electric vehicles.  My neighbor posted a quote for an electric battery...$17,000!  And CA shuttiing down charging stations to save power on the grid!  They're all plumb nuts!

Gwen, my heart goes out to you as never before...seeing the world through your eyes and realizing...you're just one step ahead of me...

My trip yesterday was a waste except for one thing:  She said it does NOT look like cancer!  A scope wouldn't help as it goes beyond the throat to esophogus and stomach, it's not in there, it's in the throat and mouth...she said I need an ENT, possibly one fresh out of school with a fresh perspective.  I feel back to square one.  Maybe something I just have to live with.  But I was VERY relieved to hear it doesn't sound like cancer.  I went through the 14 symptoms of throat cancer  found here:
https://veryhealthy.life/14-symptoms-of-throat-cancer/?utm_source=first sign throat cancer&utm_medium=14SymptomsofThroatCancer&utm_campaign=adw_us&msclkid=8f1ca9d5b0fd1d171a09cac39169b991

Nope, I'm healthier than I look!  
I also looked here:
https://betahealthy.com/most-common-symptoms-causes-and-effective-treatment-for-cancer-that-require-immediate-attention/?utm_source=bing&utm_medium=cpc&utm_campaign=Cancer&utm_term=what do the stages of cancer mean&utm_content=cancer stages

Nope I don't fit the bill.  After filling out their LENGTHY questionairre at the doctor I began to wonder why I was there...I do NOT fit the bill!

So the question remains, what is it?  It's not my imagination!  And my platelets are up 25% over 2-3 years before.  At least they aren't in critical stage!

Do let us know, Gwen, if you find a nurse willing to come out on a periodic basis.  Is Dee staying there with you or is she in her RV?

[kayc]

Oh, and the Cedar Creek Fire is now up to 18,000 acres and the wind is going in OUR DIRECTION!  In 90s this week with winds, and smoke galore!  Yet they say it's moderate, ha!  Have to wear a mask outside!

[KarenK]

Kay, I'm glad this doctor was encouraging. I'm surprised none of the previous doctors suggested an ENT. I thought you had seen one or I would have suggested it. The one Ron saw determined his diagnosis on the first visit. Please make an appt. as soon as you can.

[kayc]

My previous doctor, Volpi, suggested it but my friend has had the same thing going on, 14 months longer than me (mine two years at christmas) and went to about every ENT in the valley (50-75 miles away) and got no help, no diagnosis.  That's why I pursued gastro. first.  I don't hold a lot of hope.  At least I know what it isn't.