My Sanity Needed Vents

[Gwenivere]

16 hours ago, Marg M said:

I would like to be hypnotized into thinking I was just happy.  Do not want a pill. 

Wouldn’t that be awesome?  I have all kinds of fantasies of being free of the depression, pain, worry, fear and grief.   But that’s all they are.  I’ve resisted higher doses of the AD I’m on.  I know one guy they worked for, but he isn’t taking them for depression, he is to help control his panic disorder.  He’s got a great family life with his dogs snd wife.  We’re all in such unique situations and that makes it hard to talk with anyone who can really get where we are.  We share the foundation of grief here.  I share the anxiety one with him.  Some here have children.  Some way too young to be dealing with this.  But despite all that, I’d be lost without this place snd all of you.  
 

I would take a pill if it gave happiness.  None of those TV med ads of scary side effects.  Just a pill that could restore a feeing I barely remember but I know it was great.  ‘Happy' things have happened, but I don’t feel it.  I often wonder if it’s remotely attainable.  Can’t break free from the depression.
 

Now I have to have a home visit to assess what I need.  Like grab bars in the shower.  Arms on the toilet.  A woman helping me is being.most helpful, but I don’t want to overload her.  She assures me I’m not, but I’m not used to needing so much.  I’ve overlooked an important thing just now.  I’m happy she came into my life.  I just hope I can repay her kindness.  She even said she would be there for the tub bars to be installed.  That could be hours of a window.  
 

 

[kayc]

13 hours ago, Gwenivere said:

I would take a pill if it gave happiness.

I've been on SAM-e for "elevated mood" for years, it also helps joints and liver...I gave it to Arlie when he got cancer too, figured he could use the help and it's safe for them, it's natural.  It's the closest thing I know to a "happy pill"...doesn't make you high or giddy but just helps outlook a bit, we could all use help with our endorphins!

[Gwenivere]

I looked this up and it would conflict my meds I take, so a no go.  It also says it can increase anxiety.  The last thing I need.

im really anxious about this home assessment.  Having to get there and how much it may hurt me as there is no avoiding bending.  I’ve lost track of calls I made for a shower grab rail.  One company is weeks out, another I don’t like the guy and the 3rd sounds like he is the most flexible.  Just need my friend to take pictures with her smartphone to send him.  Going to be strange going home and leave.  It’s required to maybe get me some more prep time, but I’ll lose a day of therapy.  Tho I guess doing my stairs for real and showing them my shower that they can’t simulate here will help.  I’ll have to face stairs for real and have no idea how I will handle being in my car tho Dee is driving.  I’ll have to have the oxygen turned on while I am there.  
 

I’m spending a lot of time in bed after therapies and sitting up for half an hour.  I have been trekking to the bathroom instead of the bedside commode.  The oxygen tube always gets jammed in the door even tho I don’t shut it.  I’m trying to envision being at home every day and that’s getting me down.  Don’t know what I’ll do about meals.  Dreading home health care.  How not walking will set me back.  I wish I were more disciplined about exercises, but I’m so dead inside.  I knew this could be a problem doing this with no real motivation but pain relief which has not happened.  If I knew I was going home and back to where I was I’d have a ugh better attitude.  If my surgeon gave a damn it would help.  I haven’t heard back about pushing out the post op visit.  Guess I better make a call.  
 

My mantra is becoming 'where the hell are you, Steve'! ?

[kayc]

What?!  It's used FOR anxiety!  I looked it up again yesterday!  I've definitely noticed it helping my mood elevation and Arlie's too.  I've been on this for years with no problems or side effects but then I'm not on anti-depressant Rxs.

Can you have meals delivered?  I know there used to be something here that would deliver to elderly.  They were pretty good, I couldn't have them with my diet but we used to have them at senior meals.  A friend who had cancer lived on them the last few months of her life.

I'm sorry you aren't hearing from your doctor, so frustrating!  I was supposed to hear back yesterday and didn't.  They called four times the other day when I had company.  They changed my appt because of "scheduling issues" when I'd had the appt. for 12 days!  Sounds like poor planning on their part.

 

 

 

[Gwenivere]

I have to be very careful with supplements having a panic disorder.  Many things that just make people a little jittery or revved up can cause anxiety attacks.  I couldn’t even drink a cup of coffee or have a coke.  It’s limiting like diabetes.  I have to be careful with my b12 as too much will be too stimulating.  As I am dependent on Xanax to control this I take doses that would knock most people out.  Just clears my head so I feel normal or close to it.

I’m trying to change an appointment with my surgeon and getting no response.  I’ll have to call again as I’ve done that and sent emails thru the medical portal.  It frustrates me as each day that passes books up appointments down the line.  Nothing upsets me more than being rescheduled.  It’s no biggie to them, but we rearrange our days around that.  

[Gwenivere]

Waiting on this home safety evaluation.  Hoping the nurse didn’t mess up my meds getting up.  I made her give me one med from the dispenser I could read the dosage.  The one she had looked wrong and way too much.  She said she couldn’t make out my bottles (brand) instructions and I kept telling her the instructions are in the computer as my doc has changed directions over months of experimenting. The 'recipe'' has been the same for weeks.  She also had an extra pill that looked like a generic of my AD with my brand AD.  It was a challenging way to start an already tense day.  I just want to get this over and get back.  I know they will have me do day to day things but some I’m not sure of and others the equipment I’ve ordered is not here.  This is going to break all the rules of not bending.  Set up a shower for Sunday.  Best get those in while I have help.  I’m looking at all the stuff I better take home like Body wipes.  I’m supposed to go home and rest when they decide.  Not sure how to do that.  I’ll know more later.  It may be after their Tuesday team meeting.  Well, they are here, all gung ho I’m going to ace this thing.  At least I’ll have Dee to talk to realistically on the drives.  She gets the fear.  The nurse said I’ll have a good time getting out of here.  Little does she know.  This isn’t for a nice lunch or just drive.  Sometimes positively backfires.  

[Gwenivere]

Did the home assessment.  Seems I’m doing so well they are going to kick me out in a week.  My biggest challenges will be....everything.  Doing well does not mean anything is easier or without high level pain.  Trying to do usual things at the house were so hard.  This is the next phase of the challenge   How to be alone most days and how to fill those hours.  Sanity is a big challenge too.   While I don’t like rehab, I’ve adapted.  Now I have to create a new life in my own home with so many limits that is hopefully temporary.  Don’t know how to get back to my schedule.  I’d modify it, but I’ve not felt right since it changed weeks ago.  It’s going to be so hard to see my car right there and be stuck.  
 

Guess I’m going to have lots of free time to post.  It’s that or daytime TV and that, I know, is not my thing at all.  Had my fill of it here.  So, lots of rambling ahead.  Fair warning!

 

 

[KarenK]

Gwen, glad to see your update. At least you have a better idea of what you are facing now. Although, I'm sure it's going to be hard, you'll figure out a new routine. In time, you'll be able to drive again. Maybe you can bring Mel home in a couple of weeks? Wish I had some suggestions for things to occupy your time. I spend my time reading and watching mostly mindless free movies on "On Demand". My son picked up 8 fairly new DVDs at the library for me. I had stopped getting DVDs because of Covid, but I guess we can't hide from it forever. Will just wash my hands a lot.  lol  I don't think anybody really knows how to escape it. It just seems to be the luck of the draw. I'm watching all 6 seasons of "Vikings". Full of plunder, pillage, rape, and kill. Funny how humanity hasn't learned a thing after all these years.

Hope your horrible pain soon subsides. Ramble on, my friend. I'm right here with you.

[kayc]

Gwen, your biggest assets are your brain and determination/survival instinct.  Comparing to my sister, you have a lot going FOR you, that's what I think they're looking at.  That does NOT mean it'll be easy, you and I both know different.  I think you're feeling your fears invalidated when they make positive statements to you, like they're glossing over the many obstacles, I understand how that must make you feel.  It's scary thinking they can dispense your pills wrong, it's a good thing you know them and catch them at it!  My sister does not know what her pills are or are for!  I know this because she's spilled many on the floor and I have to find what it is and what it's for...she never remembers to TELL me she's dropped them so it could be lethal to Kodie when I bring him to see her, I have to be so aware and on the alert for every little thing.

I gave up on the doctor, you don't even want me to get started on that!  (Poor George, I told him in full detail last night, he has/had the patience of Job).  Suffice it to say after putting me through countless phone calls, rescheduling me, filling out tons of questionnaires on line, again and again, I took my own blasted stitches out.  I need to see the doctor about my tongue/throat issue as it's worsened and now includes gums and lips and hurts immensely all the time...I will start by asking for a referral to an allergy specialist for a scratch test.  it'd be my luck I'm allergic to something I just bought a ton of and use majorly.  Like almonds, don't know how I'll cook w/o almond flour or almond milk...

At least you live in a big city, maybe you can order groceries on line to be delivered?  A big hassle I know.  It took me two hours to place an order w/WM yesterday as their website was acting up, I missed out on getting the sweetener I'd most wanted because of their problems, the price has doubled since last time (I tried Amazon first), now they're out.  Ugh.  You may not have time for daytime t.v. after all!

Hoping your pain begins to lessen...

 

[Gwenivere]

16 hours ago, KarenK said:

Maybe you can bring Mel home in a couple of weeks? Wish I had some suggestions for things to occupy your time.

I got an email from the guy who has Mel.  I’m upset as he is saying he might have to wait a couple of days to bring her home.  He got her the day I went in and it was a week day.  I’m given him a weeks notice.  Although it will be very hard having her there as I adjust myself, I don’t want to be totally alone.  To come from this place with people in and out to help to on my own is really scary.  Having Mel will make it harder, but I can’t take isolation.  People will be by now and then like home help and my buddy.
 

I actually am glad you don’t have suggestions.  I’ve heard so many I want to scream.  I’m not devoid of ideas.  I just know what appeals to me or not.  Sitting up all day will be a huge change.  I do have to say this adjustable bed has been handy.  But I wouldn’t want to live in my bedroom.   I’ll be wearing what I usually change into after being out in the afternoon.  They suggested giving myself permission to wear slippers.  Don’t know if I will.  Little touches of my usual life may help.  Those were the reward at the end of being out and about.  
 

They wanted to move furniture around but I nixed that.   I’m very stubborn about things that could help me.  It’s the change that makes me anxious on top of everything.  

12 hours ago, kayc said:

I think you're feeling your fears invalidated when they make positive statements to you, like they're glossing over the many obstacles, I understand how that must make you feel. 

 That’s exactly it.  These don’t address the emotional side at all.  I was told  that when I got home I’d be in better shape than when I left.  This was by the docs.  They said no driving, but everything I do is going to be affected.  Everyone here (irehab) is excited for me I’ve been cleared to leave.  No one gets the grief, depression and fear.   They either have family, never faced anything close to this or live alone anyway.  They certainly aren’t dealing with major grief.  

yes, I can do home delivery, but I want to do it!  I wish I could know for sure this is temporary.  This is the results of the gamble stage.  I am so missing counseling.  Just like having had to go through this with minor pain relief since day one after being told I’d be covered.  My level of trust has plummeted.  
 

 

[Widow2015]

18 hours ago, Gwenivere said:

Did the home assessment.  Seems I’m doing so well they are going to kick me out in a week.

Gwen:  I'm not going to congratulate you too much on getting to go home next week cause I can sense your apprehension.  But, that big step forward can hopefully mean you are slowly moving forward to a life that offers you even a small chance to be the person you want to be.  It is my hope some of your recovery pain with gradually subside.

Last Tuesday I went to my appointment to my new retinal specialist that is located closer to my new home.  I set up a driver with a medical transportation company since I need a driver to and from appointments.  I was so worried about every little part of the adventure.  What if the driver can't find me?  What if I am late and miss my appointment? etc., etc.  She picked me up a few minutes early and got me inside to the right office in plenty of time.  When the appointment was over, she got me home safe and sound.  There would've been no way I could've gotten myself home safely cause both eyes were dilated.  My bad eye, was dilated twice for an extra test. 

I had a few minutes to wait for the driver.  As I sat waiting I touched my face and realized I didn't have my glasses on.  I found my way back up on the elevator all blurry eyed and retrieved my glasses from the reception desk.  This getting old is not really fun! LOL😎 Dee

[Gwenivere]

3 hours ago, Widow2015 said:

It is my hope some of your recovery pain with gradually subside.

Me too, Dee!   I’ve been checking the net and I am falling into the long term recovery group.  I think I haven’t been as careful as I should have.  Maybe getting in my own real bed will help.  Sitting up all day will be interesting.   Yes, I have a lot of apprehension.  No one to call if needed quickly.  I have to use a ‘gate belt' to pull my legs up into my bed as it’s so tall.  Won’t have Mel til the next night.  Will give me a little time to see how I do.  I did learn to stay off the net for now, it’s scary!

4 hours ago, Widow2015 said:

I found my way back up on the elevator all blurry eyed and retrieved my glasses from the reception desk.  This getting old is not really fun! LOL

This is classic, Dee.  Glad you found out before you got home.  I’ve been limping by on my old prescription.  I know how frustrating it is to trek back.  Yup, this getting old and the maintenance gets more intense.  Whoever coined 'golden years' should be severely punished!  The only gold I ever see is if I pass a Candy Crush level on my first try.  😎

[kayc]

15 hours ago, Gwenivere said:

I’m not devoid of ideas.  I just know what appeals to me or not.

I have the family curse of wanting to "find a fix," my sister Polly is the same way (Peggy is not!)...feel free to discard anything that I write as soon as you read it!    I get it, I went through this when Peggy landed in the hospital and her neighbor "Loose Lips Wanita" sent me about 50 (no exaggeration!) emails telling me what I "should" do!   She may mean well but geez!  I wanted to make the sign of the cross and hiss at her! 

15 hours ago, Gwenivere said:

They suggested giving myself permission to wear slippers.

I discovered with my recent foot surgery that although I can't wear my regular slippers (everything comes right across the wound area!) I can wear my travel bag slippers!  Great discovery as they're comfy and warm.  I can't wear them outside though so that's a pain when I have to take Kodie out.

Dee, I'm glad you made it through going to the new eye doctor.  I tend to over-worry about things and constantly battle/struggle with allaying my fears.  I wish I could be a smidgeon more like my sister who seems to never worry about ANYTHING but not so overboard.  Too bad they couldn't have stirred up all of us girls' genes and then doled them out!

Do you have a Medic Alert button, Gwen?  It has been a lifesaver to Peggy since she's living alone.  When she falls she can't get up to get to the phone.

I think this will be temporary but how long "temporary" is is anyone's guess, my guess is it'll take a while although I hate saying that, I think you are very aware, but I hope you'll surprise even yourself with a quicker recovery than expected.  If well wishes had any influence it'd be no time at all, we here love you and are wishing the best for you!

[Gwenivere]

6 hours ago, kayc said:

She may mean well but geez!  I wanted to make the sign of the cross and hiss at her! 

That is where I am.  Gritting my teeth when it comes up.  It’s hard when I get asked and people feel they MUST offer opinions instead of saying ‘you’ll figure something out'.  
 

my slippers aren’t suited for outside either, but I won’t be doing that for awhile. 
 

My fear of falling is really intense now after the surgery.  If I did it would do so much damage I don’t know what they’d do.  I do have a medic pendant.  I have a lot of questions for PT today about being alone most of the time alone at home.  The pain has ramped up to old levels since that home assessment and all the paces they put me thru quickly.  The drive in the car aggravated things to.  I can’t even sit in bed comfortably like I did.  Sleep is shot again.  Getting dressed today was agony as was anything standing.  They say DONT BEND all the time, but it’s unavoidable many times.  Brushing my teeth, getting clothes out and on, treks to the bathroom.  I’m going to need D’s help unpacking at home.  I have this fear I’ve messed up some of the healing already.  Frustrating to be told to keep moving but paying for it and they aggravated it.  I can only hope I can handle Mel when she gets there.  I’m overwhelmed.  More so than I was.  Much is it’s getting real.  Also that they consider me fit to handle it.   I’ll have no choice.  Just afraid I’ll do damage.  Have NO idea how I’ll handle my bed.  Also the toilet being in the bathroom for the mid night wake up.  
 

anxiety is hard to control.  Haven’t even seen the PT woman so have no idea what is going on.  I killed time this morning getting rid of useless virus protection on the iPad and trying to find out my minute balance on my phone.  I need to load a upgrade for security, but Apple said at home was better as the WiFi here could be too slow and take hours!   I’d like to pack up some stuff, but probably not a wise move.  Guess I’ll try some.  The pain is the pain.  
 

Hope to cry on my cousins ear tonight.  She’s been thru hell and gets it.

[kayc]

I'm glad you have your cousin to talk to.  I hear you on the pain, it kept me from going to sleep last night and staying asleep, even with my sleeping pill, I hurt everywhere.  I can't handle this throat tongue thing anymore, constant pain and it's worsened, add my hands and foot, etc. to it, it feels too much, to top it off I had a headache all day yesterday, I rarely get them, BS is up 22 pts from yesterday, I think the pain etc is why.  And it's nowhere near on your level!

Sometimes we get through things we don't see how and the anticipation is worse than when the time comes, I hope that's the case for you.  If not, call for help, you have no choice.    I'[m so sorry.  At least your Wifi at home is better!

[Gwenivere]

Saturday, the 17th....

Having to write this offline.  This facility's WiFi is down.  It was a day of frustration as always.  Don’t know what my new neighbor is in for, but she has this great attitude.  Wonder what that feels like?  Found I was being billed for virus protection iPads don’t need so cancelled that.   Being cut off from the forum is a strange feeling.  PT didn’t come by today at all and I had lots of questions as this going home on my own looms 5 days away. The night and day alone til Mel comes home has me torn.  I’m very unhappy with my level of progress.  Can I provide for us both?  So much to do to get the house going.  I know what will bother me is the going back to the medical state which was my first thing to rip out when Steve died.  Every bit of it.  Now I bring home my own.  

I hate this being cut off.  I’ve complained twice.  'At least you have TV' was one response.  I’m watching Bridesmaids for the 3rd time.  

Guess I’ll play some video games.  This is when I usually post, check out stuff I heard about on the web, get lost in links and sometimes learn something as long as I stay away spinal sites.  😳

[Gwenivere]

It’s Sunday and no WiFi til tomorrow.  The staff are having computer issues too, but no one is responding to calls to come into fix it.  Really annoys me as my insurance is paying a lot (and me now in copay mode) to be here.  Found out last night a lot of my games didn’t run like they should.

Had the most painful nights sleep since I was I the hospital.  PT is coming today and I told her we need to talk about how bad this has become again since that home trek.  I’ve been up today and I have to get thru a shower and getting dressed.  Sitting in bed doesn’t help much.  

Toilet overflowed.  Didn’t think I’d get out of there without slipping.

Will have to see how I feel tomorrow as I can’t envision being able to do much on my own, much less with Mel, at the pain level I am in.  I packed some things to take home, but if I let go of the walker, my back and legs are far too stressed.  I’ve figured out how I should do some things at home, but all in all, I’m not sure I can pull this off with occasional home care.  It’s my big question for this place after a long weekend of the pain being worse.  Sleep is a major concern as my bed is so high to get in and out of and it means mid sleep trips to the bathroom.  It’s been 5 weeks and 6 is considered the marker for basic bone stability.  Staying here isn’t appealing, but I feel safer.  My discharge on Thursday is only 5 weeks.  

[Gwenivere]

Had to catch up on a couple of days.  Sure was quiet while I was gone.  😉

Just got news I get to stay til a week from tomorrow so I can work on some things I’ll need not to be so dependent on the walker for.  Like opening cans for Mel.  This won’t help my sleep on this mat, but I hope it pays off.  That I’m not prolonging the pain from it.  I checked with Mel's sitters and we thought her coming home Thursday would be good if I do OK on my own overnight and days a couple of days.

Called the surgeons office.   Nurse said my questions were new to her!  Said she’d have a med assistant call me and rehab here.  No telling when.  Called my insurance and contacted my PCP for home help.  I thought I’d have help with this.  It’s hard to be the one in need trying to organize all this when I’m worn out.

sorry for the slam of messages.  I’m scared and worried.  Each person I talk to has ideas.  Obvious they’ve never faced this and their experience is hearsay.  I’m pretty OCD about my house so moving things around annoys me.  Steve’s stuff was pretty confined to his room and his bathroom.   My whole house is going to change.  One suggestion was to rent a hospital bed for the living room.  They have all kind of ideas of how to spend money not realizing it doesn’t grow on trees.  
 

Need all your good vibes this extension will help going home be a bit better.  Love to all!  ❤️

[KarenK]

Glad they are cutting you some slack on returning home. Hope you'll be feeling more comfortable with the idea by then. Try not to stress too much over the changes in your house. They are most likely temporary.

Any chance your doctor could write a script for a hospital bed if your insurance would cover it?

Sending lots of good vibes your way!

[Widow2015]

Gwen:  Like Karen, I'm glad they are giving you a little more time before you are released from the hospital.  You know good vibes are coming your way as you continue recovery.  Hugs, Dee

[Gwenivere]

I need to get independent from a hospital bed.  It would be comfy, but not getting me closer to (hopefully) finding the outcome of the surgery.   I’m glad I get a few more days.   I know what I want to work on.  The only drawback is this 'bed' here.  I really wish they had mattresses.  Or thicker mats.  I know they use them for ease of cleanup with incontinence problems which are common.  I hope the changes at home will be temporary.  That was the goal of doing this.  Getting some freedom back.  Thanks for your encouragement.  💖

[kayc]

What day are you going home?

My sister has had incontinence for a few years now, has to use Depends, but she still has a regular bed and doesn't seem to have issues with that, it doesn't smell in her bedroom so I don't think she has leakage issues on her mattress, thankfully.

Although it may be a while with the healing and getting back what you're used to doing, I think it'll come, just don't know how long as everyone is unique as is their surgery.  I'm hoping it's sooner than later!  I'd be happy for you when you get back driving and just going to the store or drive thru!  I know you like to get out.

 

[Gwenivere]

I go home on the 28th, a week from today.   
 

Last night was one of the worst nights sleep.  PT had me walk a long distance with a typical walker like I’ll have at home, unlike the one they were using.  It was much harder and my spine, surrounding muscles and legs are saying it was too much.  I’ll not be walking the distance we did.  It was an evaluation and I intend to complain about it.  Thank gawd I’m not leaving Thursday.  This set me back.  

I know each surgery is unique.  What concerns me is this being spinal, I know I haven’t done everything perfectly plus there are situations I can’t avoid bending, I hope I haven’t done any damage.  I don’t know if the doc will be able to tell in October.  This is a notoriously long recovery one.  Not to minimize others like knees, there is no way to not use your back.  The fact I am limited on pain meds and have been since day one has never gotten me ahead of the pain which helps recovery.  So I fight 2 beasts thru this.  I get very annoyed with therapy and their suggestions I know won’t work in my house.  
 

I’m sorry I drone on and on about this.  It’s a realty I never wanted.  I wish I had Steve to go home to.  It wouldn’t be so overwhelming and I’d have someone there 24/7.  He could do the little things that are huge now.  Ease into daily tasks I have to do head on.  When I leave here, I don’t know what I’ll do all day.  There won’t be people in and out for connection like here.  Every now and then. Do I sit and watch TV all day?  That is so not me. Watch the hours crawl by like a prisoner, when even they get yard and meal breaks.  This whole experience has turned me into drag. I miss the old depressed me.  Looking for things to do instead of dreading them.  I’ve never felt so unproductive and useless.  😓

 

[nashreed]

I'm so sorry, Gwen. We're all "doing time" in our own way now. It's like being in prison for me too. I am so sorry about your pain. I know how hard that is. I read all your posts. I'm not tired of them. It's important to vent and get it out. Just do your best. It's really all you can do. 

[MartyT]