If You're Going Through Hell

[KarenK]

Marg, a great big "Happy Birthday" to you! Sounds like the new med is not a good present though. Hope it levels out soon.

[widow'15]

Marg:  Happy 79th Birthday.  Hope you're finding an enjoyable way to celebrate.  Wish it were possible for all of us to sit in the shade and enjoy a big cold glass of iced sweet tea with you.  Best wishes and Birthday Hug, Dee.

[Gwenivere]

I’m just going to babble here because I’m just trying to stay occupied and staring out the window doesn’t work.  Tried paying ball with Mel but it’s well over 90.
 

Did talk to the surgery assistant yesterday.  It wasn’t that comforting.  He said I’ll be in more pain after the surgery from the incisions which I figured anyway.  I told him about my other conditions, gastric, edema and the always overlooked anxiety disorder not normal nervousness.   That I took meds I needed to continue to thru all this and he said they’d figure out pain management as the 2 conflict for breathing.   He also wanted me to get a shower in on surgery day or the night before and I said no way that would happen.  I’m not even sure how I’ll get one in before Weds!  It’s that bad.  I’m just going to do what I can and they’ll have to work around it.  I can’t be the only person practically crippled by this.  Some people are just in pain but function.  My IBSD is in full gear.  Have to eat, don’t want to, always worried I’ll need a bathroom.  I got lucky yesterday to get out to the PO, drop a care package to my nursing home buddy and get some eggs.  Paid last night and then trying to sleep in this heatwave is horrible.  I asked him how do I get from now to Weds and he really had no answer.  Guess he couldn’t, he has no magic wand.  It’s the continuous days of this that wear down the ability to tolerate it repeatedly.  I just really wish I could sleep and really get rest.  A lot of times I feel like I have dementia from the fatigue.  The other night I couldn’t remember if I took my pain meds, the big gun one.  I finally figured out I hadn’t because I wouldn’t have taken them and put out new ones.  Simple but baffled me which is frustrating.  
 

After getting dressed, no small feat, today my first encounter with the world was a message on my machine from my insurance to tell me I have in patient post op, not day surgery.  Duh.  That they got the pre auth.  I told them yesterday it wasn’t my job when they told me to call.  I’m praying I don’t talk to one med person today.  My focus is getting some (ugh) food for dinners for the weekend.  Problem is I’m pretty much limited to drive thru's and those aren’t great for my stomach.  I’m still having my wine at bedtime which might help to quit too, but damn, it’s my hour of some lightening of the emotional load.  I can at least go to sleep for a few hours before the remaining hours of pain and stress.  
 

my housekeeper is here and volunteered to stop by now and then to check the mail.  She’s so sweet. Just have to let my house buddy know so she doesn’t get freaked seeing stuff inside.  
 

The support has been great, but I still feel I am drowning in stress.  Just can’t get calmed down which having a partner would do.  Someone to reign you in.  It doesn’t only happen when it’s convenient to call someone.  I’m going to call my cousin tonight to let her know, but I can’t call her at 2am, or wouldn’t, if I go bonkers.  This is the price of not lived as a hermit and content in it.  This wouldn’t phase my one hermit buddy as much, it’s his nature for decades.  
 

Guess I’ll stop here.  I want so much to be able to hug each of you that have helped my with your words, feelings and prayers.   If only I could.  Love you all.  ❤️

[Gin]

HAPPY BIRTHDAY,  I am 3 years ahead of you!  Gin

[Gin]

Correction!!  I am only 2 years ahead of you.    Gin

[Gwenivere]

Remember when we couldn’t wait to grow up?  What little we knew where that would lead.  Good thing for the prime decades.  Haven’t figured out if making the most of them, I most certainly did, was good or bad. Great at the time, but the memories of abilities lost is a toughie.  😎

[kayc]

5 hours ago, Marg M said:

This is my birthday, I am 79 years old on this August, Friday the 13th

Happy Birthday, Marg!

[kayc]

1 hour ago, Gwenivere said:

He also wanted me to get a shower in on surgery day or the night before

THEY can wash you!  I ordered them to do it for my sister before her sugery, they'd actually said she needed to THREE times before her surgery, are they insane? She could barely move!

[Margm]

Thanks for the BD wishes.  I have felt the effects from the antidepressant all today until a couple of hours ago..  I shall take no more.  Quality of life, not quantity.  

For my BD my sister and my kids were going to come over but I begged off.  Just didn't feel like being around anyone.  Did not feel good.  I think I have said that 3-4 different ways in four lines.  

They will come tomorrow.  I've never cared for BD celebrating and poor Brianna wants to celebrate one way and Kelli another.  She does not like sharing birthdays..  She has had two dates.  He is a singer in a band.  I sure hope she does not get hurt.  She is so nonchalant about it, I'm afraid he might be the one to get hurt.  None of my business.  But, I think moving in with her mom and Scott was a very good idea.  

There is a TV show that might have lasted two years.  No, I would not have watched it, but did watch it with Bri.  It was called "Sense8" and had a catchy song "What's Going On" by "4-Non-Blonds" and I love that song.  I've got to admit it is too XX rated for some, but it was a group that could relocate their bodies when any one of them got in trouble.  And minus the XX rating, I wished we could do the same, because the hospital would have to run a bunch of us off so we could be with you and help you Gwen.  Since it is a Sci-Fi series, none of us have those powers.  But our thoughts are right there with you Gwen, on the 18th.  

[MartyT]

7 hours ago, Marg M said:

This is my birthday, I am 79 years old on this August, Friday the 13th.

[MartyT]

3 hours ago, Gwenivere said:

I want so much to be able to hug each of you that have helped my with your words, feelings and prayers.   If only I could.  Love you all.

 

[Gwenivere]

38 minutes ago, kayc said:

THEY can wash you!  I ordered them to do it for my sister before her sugery, they'd actually said she needed to THREE times before her surgery, are they insane? She could barely move!

Exactly!  Well, my wish for no more med talks today didn’t pan out.  I just checked my email and they want me to check in at 11 instead of 1:30pm.   Said no, I had already set up transport and my 2 pet providers.  I’m sick of being bounced around by the various entities.  I was told they had a cancellation and lucked out on this time for my normal sleep.  Now they say they cancelled someone for it.  I don’t see how that changes anything.  This was the time they gave me last week!  Then it was 5pm by anesthia.  Then back to this.  I’m fed up.  My cousin said leave it their problem, they’ve pushed me around the map enough.  I agree.  No one gets how hard this is on a patient that has no help from family.  I’m not going to keep changing things around for those stepping up to help and giving up work time as it is mid week.  I think they assume your partner will handle things and would, if we had one now, which we don’t.  Wish I did, it would save me a lot of headaches snd worry.  

[kayc]

Gwen, good for you, sticking to your guns.  They tried to cancel my sister's surgery the night before, I called and talked to them VERY STERNLY (okay, might have raised my voice a bit) and guess what, they did it.

Kodie has a knuckle or something he loves, daughter's roommate said to get it out of the house!  (it's not dirty)
I didn't, he's missing his home, his best friend, nothing is normal, this is hard for him!  He needs something normal/comfortable for him.  

I'd cook for them but they eat carbs and haven't the kitchen appliances I'm used to, bought them some, she (her roommate) berated me instead of thanking me.  I just wanna go home!!! Plan on cleaning today.  I've been doing the dishes, taking out the garbage.  Kodie has been an angel.

[Kieron]

As you say, they shift you around for THEIR convenience.   When I had to have major surgery years ago, they did this kind of thing to me and I pushed back and got my way.  It's my freaking surgery and my state of vulnerability, not a chess piece to be moved around or be hauled around like a sack of potatoes! 

Good for you that you pushed back, both of you.  People who can hop in the car and go anywhere forget that when you don't have a car, have to set up a ride, or have kids, pets or elders to arrange for cares, or can't walk/move around easily, can't walk far, in pain etc. then it's a whole new ball game.  They never listen.

[MartyT]

3 hours ago, kayc said:

I just wanna go home!!!

We hear ya, dear Kay! Any word on when it will be safe for you to go back to your own home? ❤️

[widow'15]

kayc:  Am sad to read you're trying to be a good guest but not knowing what is right is so difficult.  Sweet Kodie must be so unhappy being out of his element.  Hoping this nightmare will end for you and Kodie soon.  Hugs, Dee

[Gwenivere]

I’m sorry too this stay with your daughter visit isn’t going well.   It’s so hard to be in or have people in one’s personal space.  I feel it with my housekeeper who I really like, but she’s just in the way sometimes.  I can’t fathom that daily.  It’s a tough adjustment as we all have our routines.  Where else could you go, Kay?  Any idea how long you will have to be away?

[Gwenivere]

4 hours ago, Kieron said:

People who can hop in the car and go anywhere forget

That is what makes it frustrating.  I don’t feel like an actual person, more like a commodity for revenue.  That’s not fair to the compassionate people I’ve run across with nurses and aides, but definitely with every transaction with my insurance.  They don’t have any idea what it’s like to try and navigate this alone.  The few reps I’ve talked to that understand all the red tape always tell me they are glad they had family or a close friend to help them.  I’ve not talked to one person who has had to face huge battles so totally alone emotionally.  I’m grateful for all the help with Mel, the house and the birds.  But to actually BE with me, that’s missing.  It’s so sobering and lonely.  I don’t even know who I am anymore.  I really haven’t since Steve left.  I was more myself when I could do my activities still.   But getting disabled closed off so much.  I know it’s much worse for doing double duty.  I couldn’t adapt to the signals to ease off because there was no one else to do them. I’m sure that created so much more damage.  Now I face this radical fix to put me back into this empty life.  All I am clinging too is Mel and my limited connections with a couple people.  Maybe that will change, but I’m not a glass half full person right now.  I keep trying to keep it from emptying even more.  I’m so tired of all the things I find I have to set in place while I’m gone.  My oxygen generator and living room fountain to turn off and just remembered the couple plants I have.  The leaking dishwasher that needs to be drained occasionally.  Such minor things that are big deals.  The person covering the house snd mail doesn’t want to come by much.  When I said my housekeeper said she would stop when she was in the neighborhood, I think she took it as it would be s regular thing.  These are all solved with phone calls, but I’m burned out and it’s not even close to Wednesday.  3 days plus the actual day are stressing me to the limit.  I want to say screw it snd crawl off somewhere.  I’m so tired of being told I’m strong or the perception I am over reacting from those with their partners not having to do any of this.  

[kayc]

20 hours ago, MartyT said:

Any word on when it will be safe for you to go back to your own home?

No.  They're making progress but not out of the woods yet.

[kayc]

17 hours ago, Gwenivere said:

It’s so hard to be in or have people in one’s personal space.

My daughter is wonderful, her roommate is a little brusque, takes time to get to know someone, they're usually working or in their rooms.  Melissa and I went on a long walk, she got in at 3:30 am today from working at a farm in Cottage Grove, we're supposed to go out to eat today, will be nice to get out.  Kodie has been an angel, I know this can't be easy for him.  Her roommate told me to get his "knuckle" out of the house!  It's not dirty, I ignored her because he needs some attachments right now, everything else is uprooted, she doesn't understand dogs, this has been hard for him.  Maybe that makes me a bad house guest, but I'm his mom #1.

[kayc]

17 hours ago, Gwenivere said:

Where else could you go, Kay?  Any idea how long you will have to be away?

My little sister, my son, my pastor's wife's mother (whom I don't know), but I feel more welcome here than I would anywhere else, at least Kodie is allowed on the furniture here.

No idea how much longer.  If they sent me the alerts, I'd feel more comfortable trying to tough it out at home.  But then I couldn't leave Kodie alone for even a few minutes for fear the call would come and I wouldn't be there to rescue him, and it's too hot to leave him in my car.

[kayc]

15 hours ago, Gwenivere said:

I’m so tired of being told I’m strong or the perception I am over reacting from those with their partners not having to do any of this.

I bet, I hate getting advice from people who haven't a clue, although I think we're all guilty of having done that sometimes because we care and want to see the person find a solution.  I think the hard part is knowing how truly alone we are.

[kevin]

Hopefully in another two weeks most of the Fires will subside with cooler weather...Prayers

[Gwenivere]

The plot just gets more frustrating.  Got a message today that I have to check in for surgery at 11am instead of the 1:30 I have set up for transport and my comfort level or they will reschedule it.  I’m at wits end on this.  I’ve been jerked around by them and my insurance for over a week.  I don’t think I can win this as they will reschedule and I can’t live in this pain anymore.  In reality, it’s not that big a deal for someone who has help.  My driver snd pet sitters will be OK.  I just had adjusted to this massive decision and could at least have the night before as usual and wake up when I normally do and have time to mentally prepare myself.  This will affect Tuesday night going to bed.  I have to pack some stuff after I get up.  
 

It’s more than just that.  It pisses me off THEY had a cancellation and are moving people around like game pieces so gawd forbid they don’t have billable time is what I see.  I’ve asked isn’t there someone else who would be happy getting in earlier but I doubt that is going to work with lengths of surgeries.  I just can’t fathom how many my doc could do in a day.  Mines potentially a long one.  I just don’t get why they couldn’t leave it alone.  So they lose 2 hours!  His day was planned anyway.  Or see if a shorter surgery would want it.  Most people want to do things early.  
 

just found out my ride can’t come earlier anyway.   He’s booked for an 11 presentation.  Don’t want to drive as I will need more anxiety meds and then my car will stuck over there.  I left 2 messages pleading with them to make this work.  This will mess up my Tuesday night as well.  I’ll have to be up by 10 latest.  I know that sounds weird to all you, but it’s really an upset to my schedule.  1:30 worked with my getting up at noon, will be freaked out anyway, but knowing my buddy could take me.   Have to do the covid test tomorrow too.  Fortunately it’s drive thru and not the swab into your brain now.  
 

I don’t know what to do with this anger, frustration and fear.  My Sunday zoom buddy suggested asking Robin or Deb to take me.  I’ll ask when I see them at the church.  Still doesn’t solve the early hour thing.  All I can feel right now is why, why, why is this happening in an already overwhelming situation.  😓😓😓

[kayc]

I'm so sorry, Gwen!  Praying you find a ride in time.  This is a lot, so hard to go through something like that alone.  Can you have a cab come or is that too iffy?

Weather supposed to cool off and they have the closest fire contained, not much growth on the other ones threatening, decided to drive home.  Discovered my freezer thawed out, dripping all over the refrigerator and floor, everything a mess.  Did NOT need that on top of everything.  Unpacked, against better judgment, sick to death of living out of bags/suitcases and not knowing where anything is.  When I packed I honestly thought I'd never see my home again.  They're doing their best.  I will repack a LOT lighter, just take what I need to get by for maybe a week, not the rest of my life.  

Was having terrible problems with my laptop not working, doing weird things, never had that before, the control was stuck, couldn't figure out a changed setting either.

Did a sweep of Melissa's place, still left a couple of things there.

Tried something that thawed out, will wait and see if I die before I eat something else.  Hard to make Kodie understand why he couldn't have a bite.  Of course he wants to see Jazzy but they won't be home at all this week, she actually had the nerve to text me and want me to take some friend of hers to Eugene Friday.  Didn't respond, really?!  Don't they know someone NOT under these evacuation orders?!  Can NOT leave Kodie alone here while this is going on.  Will wait until Thursday to decide about Friday, I may not even be here then.  Good grief.