If You're Going Through Hell

[Gwenivere]

I’ve been trying to think of how I am so changing lately.  My losing more and more interest in life.  Or being alive.  It’s become such a struggle.

The word resigned hit me last night.  Am I becoming resigned to my life essentially being over.  That is how it feels.  Not only are the physical limits getting worse, but mentally I seem to be checking out.  I’ve run out of ways to make a day have any meaning whatsoever.  I do the robotic schedule.  Get something if I have to, even try finding things to fill gaps, but that’s all they are.  I know if the pain were decreased it would help.  I hate that even thinking of doing a task around here has consequences.   
 

Today is the church dinner.  I don’t really want to go.  It’s a shower day, I want it, but it’s going to kill me.  I want to break down and sob but it won’t happen.  I even felt I was in some surreal place throwing Mel’s ball.  Not really there.  
 

I’m tired of everything.  Eating is a big one.  Trying to keep up with people I care about.  Knowing I don’t matter much to the few I know locally.  This is going to sound like TMI, but I think about sex all the time.  Not fantasy, times I had, mostly with Steve, but others that made me feel alive.  That unique touch you only granted to select people.  Just knowing it was in your life so you didn’t think about it as a loss.  I ran this by my counselor and she said this Is normal, but many don’t talk about it.  I think how he and I evolved over the years about the definition.  How intimacy changes as we do.  But it was always there, like a cozy blanket.  I feel it was bound it happen when it was lost.  It makes sense to me.  I know my buddies aren’t as they were, but they have their times with their partners that are special.  Just being together is so special.  
 

I only care I look presentable now.   Take no steps to spruce things up.  For what purpose?  Myself?  Doesn’t cut it for me.  I know it does for some.  Esteem.  But they may interact with others more.  I don’t.  Again, limits beyond my control.  I would like volunteer days because I would dress differently and they felt special like our nights out.  That is all gone.  Even the dog park was a social gathering that didn’t call for fancy, but you’d dress for the weather and wear things you normally didn’t knowing you were going to heat up as the laps mounted.  Before the pandemic I still put on light lipstick for the day.  Masks nixed that.  Showers are just a day to check off I have done the hygiene thing.  Not the fun of body sprays and lotions.  There are 3 things I can skip now but I don’t, yet.  Maybe when the stuff runs out.  
 

I’m not even sure I could ever get used to that again, it’s been so long.  I’m bombarded with it on TV, movies and commercials.  I see ads on webpages or in the paper for clothes I’d normally buy because they appealed and would continue my gypsy type style.  Now it’s jeans and the same shirt til laundry day.  Just wanting to get into lounge ware ASAP when I get home.  Being alone sucks.  It impacts everything.  Even sitting here writing this.  Back when, I’d be too busy with my 'family' to do this.  But they are gone.  The house is semi lived in so not demanding much.  Thrill of the day?  Still waiting and know it won’t come.  Just want to check off my list and call it enough.  
 

I do think loneliness can drive you bonkers.  This s not the me I ever was.  She’s been fading away for years.  Normally I’d have a zoom call this afternoon, but the person is off visiting relatives.  There’s an extra hour to this long day.  An extra hour I used to have no trouble filling.  Throw the kids in the car and go to the park. No church meals, Steve would be BBQ'ing.  Hop in the shower and feel good, not a torture session.  
 

so.....resigned.  Stop looking for miracles because they don’t exist.  Little kids lose innocence.   So do adults in more complex ways.

[nashreed]

I'm so sorry, Gwen. 

I actually had a morning where I felt detached from myself: from guilt, from anger, from all of my emotions. It felt peaceful, actually. But, it also means that I have been without love now for over a year. Annette's love was always there, and I was able to feel it a little still, even after this long. But, I honestly felt like a ghost this morning. And, of course, this afternoon I was back to the guilt and anger at the situation I'm in. 

I'm bored with life. So freaking bored with T.V. The theaters are open here finally, but there isn't a damn thing I'd want to see. The last time I was in a theater is when they were having a one night only showing of 6 old "Twilight Zone" episodes on the big screen in Tulsa. I am so bored with eating and the mundane aspects of life. There's nothing to look forward to for me. 

I certainly miss hugs from Annette. I used to hug my Mom when I visited here before Annette passed, but she doesn't like it. She has a whole story and thing about hugs, so I don't push it. It's easier to just get used to it, get used to no love. I am thankful that I'm not in pain, and I know what that's like, and I'm so sorry, Gwen. It's all I can do, let you know that I know what its like to suffer through chronic pain. Annette had severe RA for 20 years. It's frustrating to not be able to do anything for somebody you care about. 

 

 

[kayc]

15 hours ago, Gwenivere said:

Little kids lose innocence.   So do adults in more complex ways.

Yes, as I've said before, when we're hit with something this traumatic, this life changing, it does take away our innocence, that things will go on as they have, that life will continue and be good.  It destroyed that feeling, and once struck by it, we can never again have that innocent "unknowing" that we had before.  Now we KNOW all too well how life can change in the blink of an eye, with no warning.

 

15 hours ago, Gwenivere said:

I think about sex all the time.

I don't think about sex, it's something buried, in the past, gone with him.  A part of my youth.  I just don't go there.  Not sure how everyone else handles it.  You're right, no one talks about it.

 

15 hours ago, Gwenivere said:

I only care I look presentable now.   Take no steps to spruce things up.  For what purpose?  Myself?  Doesn’t cut it for me.  I know it does for some.  Esteem.

I do my makeup/skin care routine still, every day, even though I plan on seeing no one.  But I've always been that way, since I was 13.  We'd go camping, not see anyone, still I'd do it.  I do it for ME.  It makes ME feel better about myself.  I care how I dress, even if it's only jeans (it usually is  ).  In the winter I may wear jeans & boots to church as it's cold/snowing, but I'm back to dressing up for it now that the weather is warm.  Of course, I'm on the platform, otherwise who knows, I might just wear jeans.

People don't take my pain/limitations seriously, expect more from me than I can do.  I guess if they don't live it, they don't know.  Especially if it's not something they can see.  

So it looks like I'll be taking my sister 130+ mile round trip every week for six months unless snowing for her macular degeneration...she was diagnosed two years ago and said nothing!  Is she waiting to go blind!  I mean, she deals with NOTHING!  It drives me nuts, we're very different.  She puts everything on me, like she's my problem now.  She's not my spouse.  It feels differently if it's your spouse, you know?  I do what I can but it's hard, it's not only a day a week gone, time away from Kodie and our routine, but the expense and wear & tear on my car as well.  And knowing I have no such person for me.

 

[Gwenivere]

6 hours ago, kayc said:

People don't take my pain/limitations seriously, expect more from me than I can do.  I guess if they don't live it, they don't know.  Especially if it's not something they can see.  

That’s the truth!  Mine are taken ‘seriously', I guess, but not acknowledged as for how tough this is.  There's no one around all day seeing the struggle.  My housekeeper does and repair people.  People in stores just ignore my struggling by them.  There’s nothing they can do anyway.  At the church on sundays they often bring the meal to my car.  Much as it hurts, I’d rather hobble to get it.  For my self.  I was moving some things around from the car to the garage to the house yesterday and thought I’d never make it thru the pain.  It’s all so discouraging.  

 

7 hours ago, kayc said:

once struck by it, we can never again have that innocent "unknowing" that we had before. 

I was just thinking that sitting outside tossing Mel’s ball.  The ghosts I always see in the back yard now.  How big a part of life it was around here when I had a full family.  Thinking I’ve got another whole day to get thru with nothing that means anything.  The house so quiet and the ticking of clocks as time drags by.  I don’t know what it feels like to laugh anymore.  Not for real or the kind I manage when out in public which is hollow now.  People will some times do that thing like with kids to me.....tease til I smile and say, got ya to do it!   Now, isn’t that better they say.  No, but I say yes.  I have had some rare quick conversations with people that feel good.  But it’s that lost innocence that hangs over me knowing them feeling is fleeting now, I have to go back to my reality.  I’ve really tried to connect with people too.  Last was a guy from my local support group who nicely turned me down because he is too overwhelmed right now.  I understand.  It would have been nice tho as I so relate to much of his feelings.  
 

7 hours ago, kayc said:

She puts everything on me, like she's my problem now. 

Well, Kay, isn’t she now tho?  You’ve committed to making these doctor trips for months.  I understand your concern for her as well a your frustration.  But you did take it on.  I’m not saying you can’t gripe.  Do so at will!  It’s a big thing you are doing because you care.  She’s lucky you do.  You are right, if it were our spouse, it would feel different.   Are your other sisters close to you physically?  Are they capable to be of help?  Even financially for gas to help?  I’m sorry you lose a day.  I know you have other things to do and worry about Kodie.  I don’t do much, but Mel factors in always.  It is a reminder we have no one to help us.  Not that we needed it.  I know it’s a hardship, but you are a loving person and this shows it.  🌹

[Kieron]

On 5/30/2021 at 5:25 PM, Gwenivere said:

 Little kids lose innocence.   So do adults in more complex ways.

Wow Gwen, the writer in me appreciates this very much. 💖

The ghosts you mention are thick in this place, too.  Yesterday was dark, cold, gloomy, and wet.  Such days take the wind right out of me.  I know my resilience has taken a beating, first by his death 4 years ago, and then this past year did a KO on it.

 

 

[widow'15]

17 hours ago, kayc said:

So it looks like I'll be taking my sister 130+ mile round trip every week for six months unless snowing for her macular degeneration...she was diagnosed two years ago and said nothing!  Is she waiting to go blind! 

kayc:  I am surprised she hasn't gone blind.  Not clear on what type of macular degeneration she has.  Is it dry MD or wet MD?  Will she be receiving injections?  You are a blessing to her to be available to drive her.  I used to be able to drive to my appointments but once I needed injections in both eyes, I had to hire a driver to take me.  I hope she follows the specialist's directions so she doesn't lose her sight.  Dee

[kayc]

18 hours ago, Gwenivere said:

But you did take it on.

Who tells their sister, "No, just go blind."  There is NO public transportation here!   Did I have a choice?  Only if I'm a sorry SOB.

 

8 hours ago, widow'15 said:

Is it dry MD or wet MD?

I don't know any more than what I told you.  I can't believe she didn't tell me sooner!  I'm surprised her husband didn't make her go in!  I do not see how she could continue to live on her own if she went blind.  She's boxed herself into a corner, I'm afraid, by not taking care of herself.  It's scary how old age can be.

[Gwenivere]

Sorry if I upset you, Kay.   That was not my intent.  I just wish you had more support on this as you have do much on your plate as it is.  I know you’re a loving person and wouldn’t abandon your sister.  I also understand your anger with her.  I agree her husband should have insisted.  This isn’t something to take lightly. Yes, old age is the big challenge.  My head has ideas but the body disagrees.  
 

Agsin, I apologize.

[kayc]

Now I find this is for the rest of her life, but after six months it's once a month.  I can't take her in the winter, I can't count on not having snow/ice and she's too big to get into my pickup, plus it's too high for her to get in.  She needs a back up person.  I wish she'd call senior & disabled services and see if there's any help available.

She said she thinks it's wet MD.

[Gwenivere]

I’m sitting here waiting for the back surgeons office to call me.  I’ve been in intolerable pain for 2 days now.  If this were a new problem, I would go to the ER.  Having just been there last month and a scan found a spine fracture to accompany my lower spine degeneration, it seems pointless to go back.  They can’t do anything except say, yup, your back is f*caked up snd you need to see the specialist.   I tried yet again to understand their policies about reviewing scans with the receptionist.  She has no power so I can’t blame her.  
 

The nurse called it is was the same runaround.  My chart has been on his desk for weeks and he hasn’t gotten to it.  She says she will bring up again tomorrow.  Well, I have a pretty good idea how that will go.  I stressed I just want to know how to deal with this pain, now that it is affecting everything I do, including sleep, til our appointment mid June.  They won’t prescribe pain meds and neither will my PCP now.  She asked about a pain clinic and I told her they only offer spinal injections that send me into panic attacks.  What’s most discouraging is my old tricks to lessen the pain don’t work with this new fracture.  It’s just putting to much stress on already existing problems.  Pain means don’t do something.  What do you do every movement does that?  Rhetorical.  So now I’m on the phone with my other nemesis Sears to reorder a lost part.  Just killing time when I face a shower that is gonna be so tough.  This isn’t living.  It’s a nightmare I can’t wake up from.  I can’t even g to sleep to escape.  I’ve got to get out of here for a bit.  Yesterday I went to the Dollar Tree and bought things I thought I needed but didn’t.  I can’t keep inventory in my head anymore.  
 

I never believed in hell.  I see it can be quite real.  If only Steve were here to lean on.   A lament that is pointless, but I feel all the time.

[widow'15]

11 hours ago, kayc said:

Now I find this is for the rest of her life, but after six months it's once a month.  I can't take her in the winter, I can't count on not having snow/ice and she's too big to get into my pickup, plus it's too high for her to get in.  She needs a back up person.  I wish she'd call senior & disabled services and see if there's any help available.

She said she thinks it's wet MD.

kayc:  So sorry to read it is wet MD.  I agree for your sake she should call senior & disabled services if it is available for her.  Not knowing what her income level is can determine her ability to use disabled services.  I felt fortunate to find someone to drive me once I started getting injections in both eyes.  At first my friends and neighbors offered to drive, but I could see I could not continue to accept their help and hired the lady who used to walk my sweet Maddie.  I will miss her service once I move.  I asked if she would drive me and she said yes, but due to distance and time, the cost would be prohibitive.  So I will be looking for a service closer to where I will be living plus will probably have to change retinal specialists. 

Also, the injections are very costly so am hoping she has a good supplemental.  Depending on how her eyes react to the injection medications can also change throughout her treatments.  I wonder if her dementia created an inability to remember she had MD.  I don't think I have full blown dementia yet, but some days I don't want to remember what my old body needs.  Losing my husband at 74, kinda late in life, as we all know, throws life into a tailspin. 

I am on a Facebook site, Macular Degeneration Support Group, that has helped me  keep up what is to be expected of this disease.  My heart goes out to you and your sister.  Dee

[widow'15]

2 hours ago, Gwenivere said:

 I’ve been in intolerable pain for 2 days now.

Gwen:  So sorry your pain is getting more intolerable.  Keeping you in my thoughts.  Dee

[KarenK]

Gwen, any possibility you can see another back specialist? The way you're being treated is just awful. I don't understand the "no pain meds" thing. Not good patient care at all.

[Gwenivere]

I was thinking of you today, Dee, when talking to someone today about how complicated medical stuff has become.  That you were turned down Xanax still astounds me.  Brat2 and I have so much pain and neither of us can get meds for it.  Each of our docs reasons don’t make much sense and keep us limited victims of pain.  Makes me wonder why they bother to manufacture them if you need to be at deaths door to get them or undergo extreme surgery.   I hope you can find doctors you are comfortable when you move.  
 

24 minutes ago, KarenK said:

any possibility you can see another back specialist?

I would like to.  They’d have to be able to do it virtually tho, no way I can get in anywhere.  I’m guessing. they’d want a newer low back scan too.  What scares me also is if this new fracture is indicative of bone strength, then surgery could be out to support the hardware.  Not that I want it anyway.  And where would that leave me?   Facing assisted living?   I also have that pesky panic disorder that makes it hard for me to have to go to other hospitals which are close to, if not in, downtown.  Maybe some have off campus offices.  I should look.

[kayc]

16 hours ago, Gwenivere said:

I never believed in hell.  I see it can be quite real.

I'm sure you feel you're living it right now.  Do you know how your back fractured w/o a fall, is it because of the degeneration of the bone?  I'm impressed with all you do to try to solve your problems when my sister does nothing but lay it all on me.  And the rest of the family stays idly quiet and says "Well at least she's nice."  How nice is any of this?

I guess I'm not understanding why they won't prescribe you pain Rxs, what's it going to hurt at this point?  What are they trying to avoid by withholding it?  And the general disregard of your doctor not even getting to your file on his desk for so long!  It's unconscionable.  

14 hours ago, widow'15 said:

I wonder if her dementia created an inability to remember she had MD.

I don't think so, and her husband had to know.  She has ALWAYS buried her head in the sand, all her life.  Just refuses to see what she doesn't want to.

 

[Kieron]

Likely the mortal fear that doctors today have about prescribing controlled substances and controlled medications is a big part of why they dig their heels in, but this refusal you're describing is indeed unconscionable.

[Gwenivere]

This refusal to prescribe leads to so much mental stress with the physical.  I absolutely understand  why someone  would call it quits living this day after day.  I have myself.  But you can’t say that to them.  They certainly won’t be swayed to give you anything hearing that.  So you’re stuck.  
 

5 hours ago, kayc said:

Do you know how your back fractured w/o a fall, is it because of the degeneration of the bone? 

These are the very questions I have been trying to get answered for the weeks I have been calling and told my file is sitting there.   They keep talking appointments which got me to wondering if they won’t talk to you unless they can bill you.  How many times can you hear the nurse say she will tell him again you called for some help while I wait for my appointment on the 17th?  I’ll call again today.  I tried looking. For other surgeons and as I suspected they are all too far away.  My guy has a 5 star review.  Many articles about him in journals and such.  I don’t doubt his expertise, I just need someone to talk to me!   And he has all the info right there!  

[Kieron]

2 hours ago, Gwenivere said:

  They keep talking appointments which got me to wondering if they won’t talk to you unless they can bill you.

Ding ding ding.  🤬  All about the dollars.

[Gwenivere]

Seems that way.  The doc actually did call, 15 minutes after I left the house and a little after 5 when they closed.  The message said to call him Friday so we could try and connect.  Let me tell ya how I’m not holding my breath on that.  I have a housekeeper coming, a counseling session and need to get food for the weekend.  
 

I was told my lost dishwasher part was ordered.  No tracking number tho.  Sears says they will send it when they have it.  It’s been 3 days come Friday.  another thing I would suffocate from if I don’t hound them.  Good for you, Karen!  ⭐️

Had an appointment with my doc Thursday.  Wants me to get bone density scans and a mammogram.  I told him a mammogram is soooooo low on my list.  Even getting the bone one will require getting help in.  Then he started talking about meds for thin bones which I know are nasty to take or you can get infusions.  Lovely!  I had to remind him my motivation level is nil on stuff.  I know he’s trying to help, but he doesn’t get that doing all this.....stuff.....is so much harder when you’ll just be alone anyway.  He’s young snd modified his hours to spend time with his wife snd kids.  We are worlds apart.  
 

 

[Gwenivere]

Don’t know how I’m going to keep going day after day.  Horrible nights sleep after food shopping yesterday.   Sobbed myself to sleep from the knowledge it would be a painful night and Ally hit me hard.  I hadn’t cried like that in forever.  Maybe (beyond missing her like crazy) it was all talk of tests to keep me here.  So many it makes me realize what a physical mess I am.  They all would involve about 4/5 doctors beyond mine.  This isn’t even counting the dentist.  I know I’m looking for things to do, but this ain’t it!

I've been watching Nomadsland.  It’s a tough watch.  This woman lost everything.  Husband, job, home, even her small town actually closed.  She lives in her van.  She has 2 very important boxes, dishes she loves and the other clothes and pictures off her husband.   There’s a scene someone asks if she is married and she say yes she is, not was.  The asker understands saying the ring symbolizes eternity and she never take it off.   She says she couldn’t if she wanted to.  I don’t know how it ends yet as I only get in half hour a night before trying to destress for bed stress.  I don’t know if I’d recommend it, tho it is so well done, if your are in the pit of depression.  She making a lot of contacts, but she’s so alone.  The whole van living thing is like a simile to me of the things we’ve had to change that we didn’t want to.  Being consigned to that tiny space which represents grief.  She’s surviving but just wandering thru the world.  On the up side she gets to know some really nice people and experience nature in ways we don’t.  But it’s all so fleeting.  And when things go wrong they are so much harder.  I’m ready to start Ray Donovan for some escapism!

Just took some bird scraps out.  Can hardly walk.  Supposed to call the neurosurgeon snd there is a message waiting for me in my med portal.  I’m sure it’s up lifting. Not.  Then a call to Sears and dealing with the housekeeper.  Oh, and counselor on zoom.  I’d rather curl up and disappear, but it hurts too much.  
 

Hope all of you are having better days.

 

[widow'15]

6 hours ago, Gwenivere said:

I've been watching Nomadsland.  It’s a tough watch. 

Gwen:  Oh my, thanks for the information on this movie.  I'm not into many current movies and this one sounds like a downer for sure. Maybe if I ever have my head in a different place and my life is calmer and bored with all the re-runs on TV, I might forget your synopsis of the movie and watch it.  But, right now I thank you.  Dee

[Gwenivere]

I’m certainly no Roger Ebert, but I sure know it takes being objective and I’m not in that position.  I would have found this movie compelling for the acting and education of this lifestyle if I was watching it with Steve.  Or at least he was in my life.  It is truly a way of life for real life nomads.  It’s a true lifestyle.  Many choose this.  

[kayc]

I guess it depends on perspective at the time, it would either put fear into us of becoming like that or it'd make us feel better that we at least aren't homeless, but we can relate to her loss at any rate.

My sister did something to worsen her ribs, it's unbearable to her, can't get her to go to the hospital though.  My pastor said I should just TAKE HER!  I can't, I wouldn't be able to get her in my car in the shape she's in and she's UNWILLING!   She says she may call an ambulance on Monday.  Why Monday?!  I think it was from her getting in/out of bed as that's all she did that was different and I had told her to sleep in her chair and not try to get in/out of bed, it's too much strain but she did it and now she's hurting but swears it's not from that.  Had to talk to Polly last night (other sister) and she started yelling at me again, it's what she does when she's upset, so I waited for her to finish and was just quiet, let her go.  I know better than to personalize, it's her lack of coping skills, not me, so I try to ride it out, at least it didn't last an hour like last time.  Anyone want a family???  BP & BS both up, of course.

 

[Gwenivere]

6 hours ago, kayc said:

Had to talk to Polly last night (other sister) and she started yelling at me again,

This from a sister who isn’t helping you with the other?  Wow, no thanks even tho I really miss a family.  I so feel for you.  If you ever needed support it’s now.  It does sound like an ambulance is the best way to transport your sister.  We know ER's can’t fix all problems, but at least they have access to every tool to determine what is wrong and who to contact.  Or admission if things are really bad.  She could have them assess her eye while there too.  You have to safeguard your own health too and your being put in such a stressful position.

 

[Gwenivere]

My neurosurgeon's assistant actually called yesterday afternoon!    It was about at the time of counseling so I was distracted as I couldn’t call her to let her know I’d be late.  Anyway, he said my mid back fracture was a compression and not something to get super worried about.  That it would take time to heal so I guess that’s a good sign.  I had such a short time with him I didn’t make good use of it, because of being distracted and also knowing he wouldn't want to do spend a long time on the phone, to ask why the lower back pain has gotten so intolerable.  He did mention I probably have muscle atrophy which makes sense since I do so little because of pain.  I think about what a cruel twist that is because it was the pain that caused me to do less and less and now that increases pain.  The trek the mailbox is always a reminder. Heck, getting up and dressed starts the cycle.  One good thing is I actually got to sleep more this morning from not doing much yesterday which is also bad for me.  No matter what I do there are consequences.  Now I have to wait til the 17th to talk to again.  I doubt I could get another call back at this point.  This one took 5 weeks.  
 

I sent a pic of some odd mottling on my thigh to my rheumatologist per my PCP and  of course they want me in person.  It looks vascular to me.  Will wait and see what they say.  Plus that I have such severe back stenosis now and couldn’t walk in unassisted.  
 

I’m kicking myself for not stressing how painful this was to the back guy.  It also distracted me in counseling.  My counselor was not having a good day and wrote me an apology later for jumping on me about some possible upcoming changes that she might stop doing Zoom sessions, just phone and may retire in a year or so.   I didn’t react well, but I thought normally considering that news.  Like losing my dentist.  It’s a scary thing after so many years and a part of my sanity tools.  I know there are other counselors, but I’ve been with her about 30 years.  A lot of investment and she really knows me. Anyway, it was nice she apologized to my being a bit freaked out at yet another change.  She certainly has the right to do what’s best for her and as she reminded me, she is 79 and is succumbing to old age.  It’s an intense job listening to others get to air their frustrations and not intervene with personal reactions.   
 

Finished Nomadland.  Definitely a downer that I wish I had not let into my state of mind right now.  Started the latest season of Blue Bloods.  Really makes yearn for a family.  And it’s Saturday, my loneliest day of the week.  Our day for extra attention.