If You're Going Through Hell

[Gwenivere]

I’m so sorry, Gin.   So hard to see your brother that way and maybe never again.  I hope you do.  Yes, to many losses.  M pay heartfelt thoughts for you.  🦋

[Margm]

I'm sorry Gin.  Maybe they will keep in touch with you.  Our getting older is hard.  2020 is a rough year.  I too hope you get the chance to visit again with your brother.  

[kayc]

Gin, I am so sorry.  I can't imagine what you are going through, I never had a point where I realized my seeing my sister would be for the last time, although very worried for her, advocating fore her, I still held out hope.  Turns out the doctors didn't tell me everything, instead telling my sister with dementia, who of course didn't pass on the info as she gets confused.

I hope and pray with you that you get to see him again.  I'm glad he'll be in good care.  Sending you hugs!

[Margm]

I was thinking how we could get through anything without our mate.  I kept having swelling in my left jaw. (Five years ago). I went to ENT who found a piece of tooth or chipped bone that had been cut out so many years ago, probably when I was 19-20.  It had become inflamed, after all these years.  I had forgot about this entirely and cannot place the time zone on it.  I know he had to do surgery in the hospital and Billy (and as usual, the kids) were with us.  He scheduled a follow-up to remove the stitches (I guess), and now I remember going in by myself after I had gotten Billy's cremains.  The same week.  I remember sitting in the chair, being examined and telling him Billy had passed.  So, i went without Billy with me.  I must have been in some sort of daze.  I am just now remembering it.  I sort of wished I hadn't.  Surely we did not know Billy was sick when I had the surgery, and then all of a sudden he was gone.  No more trouble with it. (the neck).

[KarenK]

Marg, I somehow survived watching my daughter waste away for a month and then die a horrible death. Then I spent 8 miserable days in a strange hospital the sickest I've ever been.  Without Ron. My grandchildren(who I don't know well due to infrequent visits) and my SIL who I barely knew were there, of course, but I felt like an outsider and so alone. I think my ex was the biggest comfort to me. Also, one of the nurses who took care of me. I cried all day, every day. It was a blessing that Ron was not there. It would have killed him. We are stronger than we think.

[kayc]

Yesterday I went in to get my Melanoma removed and they found another spot on my dog-bitten hand (as if it didn't have enough pain!) and they used a round tool that they pressed down and twisted back and forth, grinding down to the bone and then used a scalpel to go sideways under it, taking a big hunk out for biopsy.  I don't know why they couldn't have just done a scraping like always before.  It feels like they hit a nerve, I'm in way more pain from that than from my back.  Both wounds stitched up and covered, they told me to keep covered and dry but I have to remove the bandages prior to showering.  I don't know how I'll manage bandaging my back, this one will be for Ripley's.  She said, "Don't you have any neighbors who could do it?"  Yeah, my neighbors want to run over here when I shower and bandage my wounds when they have kids/households they're taking care of themselves.  Ugh.  It's hard not having anyone, being this alone.

The gals that were supposed to go with me I never heard from.  That's okay, I was fine driving.  It's my damned hands that hurt all the time and now this one gets MORE pain, I wasn't expecting that.

[Gwenivere]

Add in the virus, Kay.  People aren’t as willing to swing by amid all this fear.  It so sucks being alone for this stuff.  I always ask why they do things differently as they did to you, but the answers often confuse me.  So unless it involves incapacitating me, I have to trust they kno more than me in most cases.  someties have known more because I  know my body.  That thing that used to be my friend and is now something I have to live in with its many demands.  .  

I hope you figure something out.  I don’t even have any neighbors I could call, nor friends.  I always thought living alone would just be loneliness.  Never factored in physical need.  Kinda like going from a renter to a homeowner.  No one to call to fix it for us.

[Margm]

Karen, I do not know how you made it.  There were times when I was very ill, not knowing from day to day, (and I had Billy then), but my mind took all the little things it could take and it said "Tough gal, I'm gone, find your own way" and one time I got lost going to my psychiatrist's office.  No cell phones.  This truly was something I didn't know how to handle.  I knew these places like I knew my own hands.  I was lost.  I found my way to the office, not my appointment time.  These were my friends though (receptionist and doc) and I could depend on them.  Billy didn't know the real reason I needed a psychiatrist, but after the cancer, the guilt eating away at me, my dad and friends dying, the amphetamine withdrawal, he sort of left me alone.  He could not understand why I could not talk things out with him.  If I had, he would have packed his bags.  My little pea sized brain had taken all it could.  I actually escaped things I could have been hurt and hurt others.  My doc told me that sometimes your brain takes all it can and to protect itself and you too, it will go into dissociation.  I had so much fear, guilt, withdrawals from the amphetamines, my mind just said "to heck with you."  Years later, losing Billy, I never had the dissociation (unless forgetting my last surgery might have been.)  I needed it years ago, I accepted it gladly.  Now, at 78 next month, I don't think I better call it back.

[MartyT]

Kay, I'm so sorry you're in so much pain. I'm sending healing thoughts to you! ♥️

[KarenK]

Wow Kay! That does not sound like fun AT ALL! I'm sure you're glad it's behind you now. Bad enough you have to worry about the back bandage without your hand being in pain too. Maybe one of your church friends could come by? I remember a dermatologist punching a hole in my arm one time for a biopsy. Didn't even warn me it was coming. Felt like I'd been shot. He's lucky I didn't punch him back.

[kayc]

I'm ten miles away from my friends and most of them get up hours after I do.  BUT I posted my situation on FB and my next door neighbor offered to come bandage me at 6:30 am!  I will shower, put the Neosporin on, stay in my loose nightgown (several sizes too big) so the spot isn't touched/contaminated and after I get Kodie up she will come bandage me!  How is that for service!  We aren't "friends" but I've known her for years, we've been neighbors for 24 years.  REALLY sweet of her!

My sister said they "took a core" off my hand.  I don't know why not just a scraping until after the biopsy comes back?!  They've been wrong about spots before.  Still hoping they're wrong about this one!

20 hours ago, KarenK said:

He's lucky I didn't punch him back.

Haha, that gave me a chuckle!
I, too, don't know how you went through that time of loss with your daughter and Ron.  I guess we have no choice. 

[brat#2]

I'm glad you found someone to help with your bandage.  Hope the pain in your hand is a little better today.

[Margm]

47 minutes ago, kayc said:

I guess we have no choice

When it is something serious, something that needs followup, don't we have home care workers that are magically added onto Medicare or to one of our insurances?  They come to Kelli when she needs it.  I am so proud of her.  She was living 40 miles from me, she went by herself for her radiation treatments, all the treatments she has had, she made herself go to them.  I don't know where she got her toughness.  She is always there to help when any one of us is sick, but this morning she went the 30 or so miles to get her enzyme shots.  She has to go to bed as soon as she gets home.  The shots make her throw up.  The platelets cause her pain so they are trying this new treatment. Yes, she is still fighting her blood disease, her tumors have not shown back up.  Yes she is young, but somehow my thinking she is a kid, she will be 53 this month.  She inherited my blood disorder and while I am asymptomatic, she has been symptomatic since she was a teenager.  I feel guilty with her going by herself, her dad would have been with her, always was, either middle aged kid, he drove them the 100 miles to Little Rock Hospitals for their treatments, Scott's hep-C, both of their trips to the psychiatrists.  But he drove his brother also, was with him till his last breath.  Some of my doctor visits I wanted to go it alone.  Sometimes he didn't understand.  But at his sickest, the very short time, we had home health visits.  Don't they still do that?  When something is serious, don't they still provide home health?  They are used to driving great distances.  That is what they are for.  If a person is too sick to make the many visits, don't they have home health?  I know Louisiana and Arkansas are not the only ones.  Someone was at my mom's house all the time.  If a wound needs taken care of, they provide the care.  Maybe that was before this virus took over all our healthcare.  I don't go often, but if I go (and Brianna the same), they take their temperature outside the office and then call us in.  We go directly to blood draw, or office.  Maybe this coronavirus has changed medical care as we once knew it.  If you need help though, some help should be provided.  Maybe they stopped home health visits.

[Gwenivere]

I can get in home health helpmcisuts, but it’s out of pocket.  I don’t know what Medicare provides, if anything.  But a dictionary, nurse or ARNP?  Nope, no coming to houses unless it is like Steve had for hospice care.  We could get his nurse out here just about any time.  I hate going to the docs anymore.  It’s all changed with strict time allotment unlike in the past when big business didn’t have them schedule too many people a day.  I’ll forget things and have to email my doc Nd then it takes time for him to get back to me.  I also have so much trouble walking now.  Simetimes I’m not sure I can make it.  The virtual visits are OK.  It’s not the same tho.  The virus definitely made that happen.  I don’t know if things will ever be even close to the way they were before it.  The only thing I know is I’ll still be confronting massive challenges getting care because of my aging limits.

[Margm]

I really think this pandemic has changed medicine as we once knew it.  I would imagine when Marty's dad was practicing he would even go to homes.  I had our family doctor out one night when I was 15 and had decided my fair freckled self would do like my friends always did.  I spread the towel out, lay on the pier for hours.  I had ? degree burns, but clear blisters were all over my shoulders and back.  I was running a fever, and after hours Dr. Gray came to the house.  Oh, when the blistering went away I had freckles in places I had never had them.  A friend I had met when Billy was playing ball came one season without freckles on her face.  I asked how.  She said straight urine.  Needless to say I liked my freckles more than that.  

I read a poem about Louisiana this morning.  We have bad weather from any direction, often.  It is so humid sometimes you think you will drown just breathing the air, but this late in my life, it has always been  home, even before Billy.  I was home with Billy even in a tent beside the river (would have been a stream in Louisiana), in whatever state we were in.  This was home before Billy, and it was his home before me.  I don't want to be anywhere else if he is not with me.

~LOUISIANA PRIDE~
She is a Lady; Her Treasures I've seen...
Steamboats and Bonfires and Creole Cuisine!
Strawberries and Seafood, Sugarcane and Rice,
Mardi Gras, Cotton and Hot Cajun Spice!
Marshlands and Campgrounds, Bayous and Beaches,
Melons, Pecans and don't forget peaches!
She's the Belle of the Ball! What else can I say?
She's magic and music and Cafe au Lait!
Down by the levee near a plantation gate...
Where pirogues drift and festivals wait!
She's Spanish-Moss Mornings, A place I know well...
A walk by the River, a distant church bell!
She's Zydeco, Gospel, She's Blues and She's Jazz...
Just something about her no other state has!
It goes without saying; It's a feeling inside...
Louisiana MY HOMELAND... Louisiana MY PRIDE!!!
By Todd~Michael St. Pierre

And we do speak a different language.  

 

[Margm]

As I said, Kelli had to go for her shot this morning and it makes her sick, but is necessary.  I copied her note to me and will print it.

"I came home. My bones are aching so bad. It's miserable. I got my blood results from last week. She is so happy. The bone marrow is working again. Platelets are up. That might be the last injection today. She drew blood again today. We will wait for those results to see if we can stop"

I cannot stand for my kids to hurt, or Brianna either, but the note she wrote me above does give us some hope.  

[Gwenivere]

I surely hope Kelli gets good news, Marg.  Any idea how long til she will know?  It would be so great to never have to feel those sidecffects again.  Arthritic finger crossed!

[kayc]

Keeping my arthritic fingers crossed too!  Let us know what you find out, okay, Marg?

My neighbor came over at 6:45 am and bandaged my back.  Sure appreciate it!  One reason I live here, this community, they are wonderful!  In Eugene when I last lived there, neighbors didn't know each other...we did in Santa Clara!

[Margm]

Kelli goes fishing by herself.  I'm not happy with that.  I went with her close to where I live, but most of these places are about 15 miles away from me and I still have to be close to my necessity.  Her dad used to go often, but I could go then.  I am going to put the places (some of them) that she takes pictures with her phone.  She puts it on video sometimes just because I get pleasure out of watching a red and white "bobber" bob up and down catching a fish.  Especially when they take it under.  She puts the video on FB and I follow her.  She takes her mace with her, still frightens me.  Those cypress stumps used to be used by the boys in "shop" in school to make lamps with.  They would be the base and were sorta redneck pretty with a coat of shellac, wired for a light bulb and a pretty lamp shades.  Hey, some of us like hokey stuff.  .  

[widow'15]

16 minutes ago, Marg M said:

Those cypress stumps used to be used by the boys in "shop" in school to make lamps with.  They would be the base and were sorta redneck pretty with a coat of shellac, wired for a light bulb and a pretty lamp shades. 

Marg:  Kelli has an amazing skill in taking photos with her phone.  Such beautiful pictures of Spanish moss in all the cypress trees.   Thank you for sharing.  So beautiful.

And yes, being raised in New Orleans, I do remember seeing those cypress stumps in homes and in gift shops in the French Quarter. 

Every time I see Spanish Moss it brings up a childhood memory.  During Mardi Gras costumes were made out of the moss.  The crazy reveler would encase themselves in Spanish Moss with only their face showing looking like a swamp monster.  I could only think about all those insects that thrived in Spanish Moss and would wonder what were they thinking?  Yuk.  Dee 

[Margm]

Dee, I thought it interesting that people used to (and down in the Cajun area) might still use the moss with bed ticking material to make their mattresses.  Good thing  for those that could not afford a goose feather filled bed (or were allergic).  

[widow'15]

4 hours ago, Marg M said:

I thought it interesting that people used to (and down in the Cajun area) might still use the moss with bed ticking material to make their mattresses. 

Marg:  I don't remember if I knew about moss being used as bed ticking material, but can imagine there was always enough of the moss around.  I do remember my Dad constructing some kind of a window cooler thing - was called a "swamp cooler" I think.  No air conditioning back then, but we only had window fans that would pull the outside air inside passing through wet, spanish moss.  Oh my, had forgotten about that memory.  Funny how some things of long, long ago come to mind after a switch is turned on.  LOL.  Dee

[Margm]

In my home before A/C all we had was an attic fan.  Billy's folks house was cool as A/C though, and it was the "swamp" cooler..  Billy's sister, living in Albuquerque, they had swamp coolers and as dry as the air was out there it was very much needed.  All those attic fans did was pull in the hot air from outside, but we didn't know the difference.  When we went to visit my grandmother's sisters and brothers way out in the country, of course, the houses were old, "dog trot" houses.  That let the air go through.  Big porches, swings on them, rocking chairs, all sitting and waiting for Sunday visitors.  No phone, maybe no electricity???  Rural Louisiana, red dirt roads, no traffic, and big trees around the house making living in the south tolerable.  I was lucky enough to live in a time the young people have no idea about.  I was also the first grandchild and had the first great grandchildren that got to see how it was to grow sugar cane for syrup (pronounced "surp").  The smoke houses, the cotton and corn fields.  Taught them how to crayfish (crawfish), and they went to the Christmas and 4th of July reunions, so I was able to share some of the good life with them.  They remember it fondly also.  Thanks Dee, we have some good memories before the bad ones came.  I miss him terribly, but I've come to the reality I can't have him again...........not right now.  

[kayc]

Marg, those are amazing pictures!  Calendar quality.  I wish I knew photography, my daughter is good at it.  Beautiful, thanks for sharing!

[brat#2]

I don't post much anymore when I get this way I just tend to keep everything inside.  Today is 5 years that Dale left this earth and I can't believe it has been that long, it still feels like it just happened.  This past year has been very difficult with all the physical pain I've been dealing with and then the virus isolation and missing Dale more and more every day.  It's so hard to want to keep going, for what?  I'm not living a life just existing, I sure hope that some day it will feel like living.  Very sad today.