If You're Going Through Hell

[kayc]

18 hours ago, Gwenivere said:

 So, essentially, by trying to stay at what I thought was being responsible and not drug seeking, I screwed myself.

Ask for more, get them, even if you don't need/take them so you won't have them cut on you.  I haven't had pain meds prescribed since I broke my right elbow nearly 12 years ago, no matter how much pain I'm in!  Not when I broke my left fibula, not when I've had all these hand injuries, and I LIVE with continual pain!  Sometimes so severe I can't use my hands.  Esp. after I've shoveled snow.  Nope, they don't care.  Dental work, operations, nope, nothing.  They're stingy and act like we're all drug addicts!

 

18 hours ago, Gwenivere said:

Sorry for another long whine, but this could seriously affect what happens at discharge.

You have every reason to vent.  I would file a complaint with my insurance company...did you know you can do that, that they actually are interested in how medical people are treating you!  I was surprised to learn that recourse.

[Gwenivere]

If I were going to file a complaint, it would be with my insurance company for how they are trying to send me home after tomorrow.  All it would take is their doc seeing me to see that I need a skilled facility, not assisted or home.  Anyway, I’m on hold til tomorrow til the insurance guy gets back.  Guess I’ll set up a shower as normal. The wounds are protocol for staying.  

Yes, I do have problems with the pain meds too.  Have to talk to the doc here.  It’s hard feeling unsure about the situation and I am approved to stay.  None of the nurses think I’m ready to go.  My long time aides don’t either.  

All it  would take is a walk with my insurance's doc to see the same.  This is the usual, tho.  Money over a person’s needs.  This opiate stuff is really a mess for those of us that need them because of abusers.  I remember getting Percocet as a normal thing after big dental procedures and bouts with pneumonia.  I’m totally confused of the protocol now.  I guess being in severe pain after spinal surgery doesn’t count?  😪

[kayc]

18 hours ago, Gwenivere said:

If I were going to file a complaint, it would be with my insurance company for how they are trying to send me home after tomorrow.

Honestly, I'd complain on both counts.

18 hours ago, Gwenivere said:

 I guess being in severe pain after spinal surgery doesn’t count?  

I don't think pain counts period, the only ones that seem to have pain pills are the drug addicts, I don't know where the rest of us can get them!  After my foot surgery I resorted to taking 11 year old Vicodin because I was given NOTHING!  This, unfortunately, is standard protocol now.  Doctors don't want under scrutiny for prescribing it, no matter how much pain they send us home in!

 

[Gwenivere]

I’m trying to track down the PRNA about the pain levels and how her cutting them is making this harder.  I’ve been on the phone since I woke up.  Bath aide out again today.  It’s been a day of nonstop discharge evaluations in case this is turned down again after I requested a 2nd appeal.  So tired of hearing crazy ideas like assisted living and Medicare.  I recognize they are trying to be helpful, but it’s suffocating.  It also involves more than this.  It includes living in a box alone somewhere.  Giving up Melody.  13 years of nonstop emotional pain continuing.  If I go anywhere, I want to go home.  PT told me I haven’t even been cleared for range of motion which might make me more independent.  I can’t see past today right now.  That’s what gets forgotten.  I don’t blame anyone, you have to live it to understand it.  Unfortunately, no one does.  
 

10 hours ago, kayc said:

I don't think pain counts period, the only ones that seem to have pain pills are the drug addicts, I don't know where the rest of us can get them! 

On the very same streets the addicts do!   They claim they don’t want to turn us into one, yet they set up the perfect scenario.  I have a stash of Vicodin too.  Everyone I know has kept their leftover meds.  Ads on TV talk about how to dispose of them properly.  For as hard as they are to get, why would anyone do that?  I did with Steve’s meds except the pain ones.  I’ve never taken any.  Maybe the surgeon will have some ideas as I am facing months more PT.I’m getting close to a year of pain and have to have some relief.

 

 

[Margm]

Typing the "pain clinic" for a length of time, it was found that the majority of patients were from back surgery.  I am so sorry you have this.  We had decided to tackle it when we went to the clinic where they found his aneurysm, then they found the rest.  He had put off going to the back doctor for so long.  

The world does not make much sense to me right now.  Motivation is something I can't find.  

I'm sorry for the pain that follows this surgery.  I think if you set up half a dozen surgeons and give them this surgery (make sure they have their hands in the pharmacy business), and we will see how long pain pills stay negative.  People make them on illegal terms, but the illegal ones scare me.  

[Gwenivere]

There’s no denial people need pain meds after surgery.  What annoys me is not treating each patient uniquely for their experience.  Because I am taking Xanax they under medicate me.  They added another med that supposedly is not addicting, but my reading says yes, it can be.  Different source, different answer.  One thing I do agree with is I wish the docs could feel what it does for ME and stop telling me about other patients as they don’t matter in this.  This wasn’t supposed to fail, but it did.  I don’t care about the stats.  I am not surprised back surgeries are high up there on the pain scale.  No one realizes how much we use our backs for the simplest things.  
 

They create pain meds then limit them so much you can’t get ahead of the pain.   You don’t want to erase it totally or you could hurt yourself.  But you have to able to move.  Then there are all the side effects.  
 

The world doesn’t make sense to me either.  From all the violence to personal motivation.  It seems a world of pain.  Wars, shootings, huge accidents, weather, Covid.  All these leading to grief fallout.  I can pinpoint when it started in October of 2014, and it’s just been getting worse year by year.  This one, so far, has been the worst.  To be alone in it is indescribable.  Yet I keep trying, I don’t know why.  Boredom with chit chat?  Tired of pretending?  Trying to not lose interpersonal skills as that could be so easy.  I have Dee, but even she is craving some light when we talk at the end of the day.  I don’t know if we’ll ever get back to being relaxed and some level of contentment.  Wrote more than I planned.  Sorry.  Will try Bingo and see if there is some escape for a bit.
 

[Margm]

50 minutes ago, Gwenivere said:

Wrote more than I planned.  Sorry.  Will try Bingo and see if there is some escape for a bit.

Gwen, I come on here and write my word salads, long ones.  Okay, I've said it all, but I cannot pretend that I can be of any help because of the way I feel, or don't feel.  (So, I delete them, I've talked to myself). Right now you are in pain.  I am in the pain of indecision, which does not hurt anything but my head.  My doc seems to think he can train/help this old nearly 80-year-old body to be different.  This week eight years ago I had my colon rupture with the overall sepsis, one doc said I scare him.  Another told me if I didn't start eating I was losing my battle and what could she do to help.  Dammit, if I could not/would not eat, she knew to hang a bag of TPN (total parenteral nutrition) and perhaps I would perk up.  She did this, I started eating and was allowed to be discharged.  I could not take any pain medication except Tylenol (acetaminophen) and was scared to take too much of that.  Doc told me I could take up to 11 per day.  There were some days I did take six, maybe eight.  Unlike you, my back was not involved, or I doubt I would have survived.  Heating pad didn't help.  I got my trekking stix and walked from my driveway to the next and back again.  I hurt so bad nothing would help, but this.  I had a bag draining off fluids.  Billy would have made a good nurse, he never minded changing the bags out and he stood at the front door when I was walking the pain down.  I have made the decision to make the doc listen to me and leave me alone with any new meds unless they involve my heart.  The essential tremor is bad some days and minimal others.  Like I've said, it started in the 6th grade, but just the tremor.  Something in the nerves all over my body is affected.  It made me type faster, so that helped.  The main drawback was when I was dating.  The nerves would move even if I was not nervous and it eliminated close dancing because my partner assumed he made me aroused.  I didn't mind quitting dancing.  I've made it to nearly 80, I will just put up  with it, I have anyhow, for this long.  I have myself trained to be able to go a few miles in the car, as long as I'm not on other meds.  I do not have "accidents" yet, but have come close.  None while I am sleeping.  So, I will be my own doctor, unless I ask for help.  

My heart is with you.  I certainly do not wish for any more problems.  I do not want to be a problem to my kids.  My sister and my daughter are fighting medical problems, my granddaughters too, and my son just goes to work, comes home and sleeps and then goes to work again.  No life except that.  He does not do his art anymore, and he is a wonderful artist.  My daughter is an exceptional photographer, and my grandson is still lost in the drug jungles of California.  We might hear from him maybe once a year.  Really afraid for him.  He is 34 now.  I won't delete this word salad.

[kayc]

15 hours ago, Gwenivere said:

There’s no denial people need pain meds after surgery.

They never gave me any anytime I had surgery.  Mine wasn't as extensive as yours but still, I had so much pain I couldn't sleep!

15 hours ago, Gwenivere said:

No one realizes how much we use our backs for the simplest things.  

And hands.  You can add that to the list.  Everyone expects me to carry on like usual, well there's nothing usual anymore!  I can't get on my knees, and my hands never quit hurting, never ever!

15 hours ago, Gwenivere said:

Will try Bingo and see if there is some escape for a bit.

I hope even for a bit!  

 

[KarenK]

Bad tornados in Louisiana, in the south. Hope Marg is okay. I know she's in the north part of state.

[kayc]

I've been following, she's weathered a lot of storms, hoping and having faith she'll be okay through this one too.  My little sister used to live in New Orleans, sure glad she moved back to OR years ago before Katrina.  Praying for Marg and all who live in the eye of the storm.

[Margm]

I'm okay, as far as the storms go.  Have a lot of family problems.  Kelli undergoes exploratory surgery the 18th.  Think it might be adhesions (what we are hoping for) for all the surgery she has had on her abdomen. )

Myself, I worry because my sister cannot get her oxygen regulated and has lost lots of weight, but has had tests and they were negative.  

My son, who has my chronic depression, and bipolar besides, goes to work, comes home, sleeps, goes to work.  Never sees the sun.  I worry about him.

I honestly worry about a lot I can do nothing about.  Myself, at nearing 80 in August, I get afraid to come out of the house and this pandemic has not helped.  I guess the surrounding towns have a lot of crime, but actually, cannot remember even seeing the police come around our apartments.  When I get behind the steering wheel of my car driving, I am okay, it is making myself get out of the house.  I know I have to keep mobile to be mobile, but I think fear of living is as bad as fear of dying and maybe they are the same thing.  

Gwen, I hope you get some relief for your pain.  Sometimes I am not sure if the doc is trying to help or harm, or just too busy to care.  

[kayc]

Marg, my sister Peggy passed away 3/28, it was a shock!  Have been dealing with that ever since.  It hit me hard, as I knew it would but that was always "someday," now it's now. 

I understand your worrying about your kids, I do my daughter, she's capable, it's just everything she's had to go through, I sure wish she could catch a break.

[Margm]

Family all okay.  Actually did not even lose electricity, none of my family, but lots and lots of people did. My daughter took pictures on her way to my apartment and within a block of our apartments, trees were being cut away from streets and they were working on the electricity.  This has gone on for a couple of days, wave after wave.  I think we are clear now but lots of destruction in many states, ours included.  Hope everyone is safe.  Even heard of some unheard of temperatures in Canada, so Mother Nature is in a tift all over the USA.  Y'all take care.  

[MartyT]

Thank you, dear Marg, for letting us know that you are safe. Stay that way, for us, okay?! ❤️

[kayc]

@Marg MSo glad to hear you're okay!  And never lost your power!  In 45 years of living here, never had snow this late, have 27 1/2" right now and no end in sight, they keep underpredicting.  Not looking favorable to going to my son's with my daughter for Easter.
Dealing with Peggy's estate, 2 1/2 weeks now since she passed, she made me in charge, everything left to nieces/nephews.  My brother is going to a lawyer Tues. to find out how it can be switched over to him, he's younger, still intact brain.   And he's done this before.  Her bills will be paid late.

 

 

[Gwenivere]

So glad you checked in, Marg.   I had seen Louisiana was affected by some of the storms.   You know we worry about you.  💕

[Margm]

I think we have it coming again.  I'm happy not to own a home at this time in my life.  In Mount Ida a tornado had never hit, had come within eight miles but never hit the town.  Loved Mena, reminded me of my birth home town, but every time a storm/tornado hit, it seemed to be in the path.  It had a series of mountains surrounding it too, which I figured should slow one down.  We had little unusual mini-tornadoes in between towns, in between mountains that I called a TV station meteorologist and he explained we were in a stage 8 place.  I saw the wind, in a tornado-like swirl pick up a wheelbarrow and set it down from one side of the big house to the opposite side.  I had a burn going of some weeds, with a water hose held if it got out of hand.  The wind from the fire made one of the mini-tornadoes and picked up some of the fire and set it down and started burning close to the road.  I knew my heart must be okay because we had multiple water hose and it took all of them.  I never burned again.  This was not weather/rain wind, it was like those wind tunnels that form in the desert and sand swirls. 

The temperature has been hot meeting cold (35-40 is low for us and 70-80 high).  I know for sure I'd have to stay inside with so much snow Kay.

I go Monday with Kelli for her surgery.  Hope it is just adhesions from old surgery.  She is a swirl of energy right now that won't calm down.  Know she is worried.  She has had so much wrong and some turned out good and can only pray this is just adhesions.  I know from typing so many operations how much trouble adhesions become after multiple surgeries in the abdomen.  Because of the pandemic, they will only allow one person with her. 

And that is where we are right now.  I pray for relief of the pain you all are in and hope for semi-normal life soon, because how can it ever be normal again, and wish for what we thought was normal.  Your on my mind.   

[MartyT]

We will keep you and your daughter in our thoughts and prayers, dear Marg. Do keep us posted on Kelli's surgery and the outcome, as you are free to do so ❤️

[kayc]

I add my amen to Marty's post, praying for Kelli and also for impending storms.

I have a friend's memorial at 11 am and it's snowing again and sticking.  Not sure if I'll be able to go...Easter also up in the air. 

[Margm]

She is home and having difficulties.  She cries and shakes when she tries to urinate.  Had to have a catheter.  He did this via laparoscope.  He lysed the adhesions that had grown around and strangulated her colon.  He was able to untangle and lyse these but gangrene had set in around some of the colon..  He was able to clean down to pink tissue and then used methylene blue to check for leaks.  There were none, but the methylene blue caused kidney stones, or washed away kidney stones (I've typed it a million times but never read up on it), and she is crying when she has to urinate, shakes like she is having a chill.  She bleeds too. I guess if you have ever passed a kidney stone, you know what I mean.  It is not supposed to cause them, but somehow it has and I honestly think they should have kept her at the hospital.  It was shift change, and the PA (on call for the doc) said nurses did not have shift change at expense of patients.  She tried pushing the water/fluid and PA said only take one bottle of water an hour.  This is just first day.  I am going to try to go to sleep.  I hope she can.  I'm glad we have all this new research in medicine but it makes me think "give me that old time religion, give us back our family doctors (the ones that treat everything), and our old time politicians.  Oh, I guess the politicians have not changed.

That's where we are.  I know many of you are in bad places right now.  I just feel I should have stayed with her, but she would not rest if I was there, she thinks she has to entertain me.  She won't let me take care of her.  And, if I told my sister I was going to drive at night, she would just lose it.  

[Widow2015]

Oh Marg, I'm so sorry for you and your dear Kelli.  Keeping you, Kelli  and your family in my thoughts as she recovers from this horrendous procedure.  I know you  wanted to be with her as much as possible but you made the right decision to get home safe.  Hopefully she gets rest tonight, as well as you.  Hugs, Dee

[MartyT]

Thanks for the update, Marg. We are thinking of you and your daughter ~ hoping that Kelli feels better tomorrow. If no improvement is evident, I hope you'll raise some Cain with her doctor. Her symptoms (shaking, painful urination) may indicate a bladder infection ~ and that can be very serious indeed if left unattended . . .

[KarenK]

Oh Marg, I'm so sorry that Kelli is going through so much pain right now. I don't understand what shift change has to do with a patient's welfare. Seems to me she should be hospitalized. Wonder why she wasn't given medicine to dissolve the stones. Maybe that's not done anymore? It's been 60 years since I had them. Even though the surgery was laparoscope, I'd think she needed to have someone there with her.

[kayc]

9 hours ago, Marg M said:

give us back our family doctors (the ones that treat everything)

I couldn't agree with you more, although the down side to that was not realizing when they were in over their heads.  If I had my old doctor from years ago, I'd have been treated for my throat condition LONG ago!  No one wants to look at it (due to Covid I presume), it's not Covid, I've never had it!

I am so sorry for Kelli, yes, they should have kept her and be taking care of her NOW!  It angers me they can send a person home in that condition!

While you're going through this with your daughter, I'm going through a lot with mine, her divorce she's been waiting on for 26 months...they filed a dismissal.  Trying to get that stopped but most likely it'll mean having to start over.  Meanwhile I can't reach her, she's always working.

 

[Gwenivere]

IMarg, there’s nothing worse than feeling helpless and not able to do anything about it.  This does sound serious to warrant being in the hospital.  Especially after the surgery.  I hope you boys get to feeling better and soon. ❤️