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Gwenivere

Grief removes all guard rails

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On 11/21/2019 at 7:58 PM, Gwenivere said:

But it isn’t just another day, is it, Dee?  Holidays have such significance if we celebrated them with someone, no matter how big or small.  So next Thursday won’t be just another Thursday.  My goal is to try and not smother thinking of all the people I know at their respective gatherings.  Just having a better dinner and toast to my beloved. 

I have candles in my fireplace I light every night.  We started them for our mothers, taken furry kids and now one is for Steve. 

That glow gives me a feeling of warmth I can’t get for real anymore.  But it helps a bit as flames look almost alive with their dancing. 

Gwen:   What a lovely idea of lighting candles in memory of those you loved and lost.  I can imagine how comforting it must be for you sitting there remembering happier times and the feeling of warmth.  

No Gwen, really the holidays are not just another day.  The problem is that the one that used to make the holidays so meaningful is no longer here to make me smile and give me the reason to decorate the house, stand in the kitchen for days baking, cooking, setting the table with the best silverware, china, etc.   You are doing the right thing for yourself by having a "better dinner and toasting your beloved".   It is a loving gesture to honor the memories of those special days.  Being less brave than you, I  tend to be the bird who buries his (her)  head in the sand and ignores the rest of the world until it is all over.  I know it doesn't change anything once the head surfaces from the sand, but it is less painful.  Dee

 

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Kay,

Since Tom died I tried going with my one daughter to her in laws and felt out of place there so two years later I tried my other daughters grandma in law. The people were nice but I had nothing to talk about with them so went home early . Tried again the next year.

Last year I bought a turkey roll at Walmart and some Bob Evan's mashed potatoes , green beans and cranberry sauce. Had my own little Thanksgiving and watched Hallmark movies all day and had the best Thanksgiving in 11 years.  Sometimes it's better to be by yourself.

 

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5 minutes ago, mlg said:

Kay,

Since Tom died I tried going with my one daughter to her in laws and felt out of place there so two years later I tried my other daughters grandma in law. The people were nice but I had nothing to talk about with them so went home early . Tried again the next year.

Last year I bought a turkey roll at Walmart and some Bob Evan's mashed potatoes , green beans and cranberry sauce. Had my own little Thanksgiving and watched Hallmark movies all day and had the best Thanksgiving in 11 years.  Sometimes it's better to be by yourself.

 

mlg: I have to agree with you when you say "sometimes it's better to be by yourself".  I can't remember how my first and second Thanksgiving was spent after my husband passed.  The next year, I too accepted an invitation to my son's girl friend's parents and even though I felt like a fifth wheel since all were related except me, it was a pleasant day.  The next year I spent the day with one of my neighbors and family.  Again, a pleasant day, but "fifth wheel".  This year I have turned down an invite to my son's girl friend's parents and have decided just to stay home with my dog.  I might decide to bake the turkey breast in my freezer, open a can of cranberry sauce, packaged potatoes, and wing it alone.  My son is not happy with me, but am looking out for myself. 

Enjoy your day.  Dee

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9 hours ago, Gwenivere said:

For some reason happy people don’t like depressed people at jovial dinners.  Go figure.

Loved this, go figure!  :D

I don't shop at the local grocery, their produce is pitiful and their prices are three times higher than the valley's.  That's why they're located here, they'd never make it in town.  I can stuff a chicken and roast it and have some brussel sprouts, I'll be okay.  Don't need pie anyway, blood sugar too high.

  9 hours ago, Gwenivere said:

For some reason happy people don’t like depressed people at jovial dinners.  Go figure.

Loved this, go figure!  :D

I don't shop at the local grocery, their produce is pitiful and their prices are three times higher than the valley's.  That's why they're located here, they'd never make it in town.  I can stuff a chicken and roast it and have some brussel sprouts, I'll be okay.  Don't need pie anyway, Blood Sugar too high.

Dee, Wishing Arlie was here to share in the day with, I'm glad you still have yours!  I have Kitty but she's only interested in what treats I give her.

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Was in the ER again yesterday.  Still no answers bout my pain and swelling.  The doc did say, like I knew, that I had congestive heart failure.  I had never been told that tho my symptoms fit.  But is was shock.  I couldn’t stop shaking as I called my counselor.  My best X-ray  sounded horrible with my lung disease just from the 11th which was the last one.  I just passed one year of no smoking.  It also showed my back is degenerating more.  I honestly don’t know how I will deal with all of this without Steve.  I lied on intake when asked a question that is asked always now.....do you ever feel like you want to go to sleep and never wake up?  Once I said yes, at times and they scramble for a social worker and want to confiscate your stuff.  I refused to give them my stuff and said you should ask why.  It’s not uncommon to feel that way when you are alone plus it doesn’t mean you want to die.  Being depressed doesn’t mean we have a plan, that would call for intervention.  I just miss my love partner.  Grief is so misunderstood by the medical community and no one it has touched in this way.  I’ve had too many people say they understand I could scream.  

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Gwen...I'm sorry. It seems you have too many trips to the ER, too much to go through, and I know there's no fairness in this life.  I don't answer those questions either, none of their business, so they can get in my face?  I don't think so!  If they lived this life, like you said, they'd understand, but they don't.  Our lives are greatly different from what was.

I had many question WHY I was still here after all these years...after they've been through it a few years themselves, they no longer question.  It goes on and on, this grief.  Here is the one place we get it.  I have many friends that are widowed, in the early years I didn't.  I think the younger you are, the more alone you can feel in this because your peers just are not going through this.  My heart goes out to Amberly.

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When I typed the information on all the many patients I thought it strange they would make a no suicide pact with their doctors.  Really, sometimes when you are so ill, you are fighting to live, not fighting to die.  I had had thoughts during my worse times, before the cancer, of suicide, and of course after Billy left I wanted to let go, but somehow when your very ill you fight to keep living.  Like you would not go to the ER if you were bent toward suicide.  Sometimes though, you get tired of fighting so much to live.  Still, and even if you do not have any religious convictions, that is the mind-set, to live.  They cannot help us any more and Billy was the best nurse I ever had.  I keep seeing my age in front of me though and wonder how hard I will fight.  My kids have depression so bad that I have to fight to live.  They are not old.  They can have a life ahead of them.  My daughter goes to get her "immune" shot today.  Every Monday.  She will be sick the rest of the day but yesterday she was so tired she slept all day.  It happens like this.  They will draw lab work before the shot.  She gets to feeling better and all the Thanksgiving crowds and she had a party to go to for her Mardi Gras Krew .  All of the busy stores and she was exposed to  so much.  I just talked to her and she is going to get her shot early this morning.  And my son leaves today for a month.  He has his regular bipolar holiday depression.  He cannot help it and tries to fight it off but has had it for years.  They say money cannot buy health and happiness, but sometimes I think if it was there, it might help.  I know just letting go does not help, but how many of us have wanted to just let go?  My sister's oxygen level goes down with this wet weather and I just wish she could have what she craves, but she still smokes constantly.  I cannot judge her.

I admire you for fighting.  It is a lonely fight, but you have worked with some many volunteering that you know, it is just second nature to try to live.  We don't know why, but we have to keep trying.  I don't have my "nurse" and I cannot fight my son's depression, my granddaughter's listless pull for a life, my daughter's immune system fight and my sister's fight to breathe.  But that is what we do, we just keep fighting, even when the results seem even more bleak.  We fight because we have to.  

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19 hours ago, Gwenivere said:

Was in the ER again yesterday.  Still no answers bout my pain and swelling.  The doc did say, like I knew, that I had congestive heart failure.  I had never been told that tho my symptoms fit.  But is was shock.  I couldn’t stop shaking as I called my counselor.  My best X-ray  sounded horrible with my lung disease just from the 11th which was the last one.  I just passed one year of no smoking.  It also showed my back is degenerating more.  I honestly don’t know how I will deal with all of this without Steve. 

Gwen:  What a shock you have just been through at your ER visit yesterday.  It is sad to read this diagnosis and test results indicating additional back degeneration.  Will there be any treatments for congestive heart failure to make you more comfortable?  I may sound pretty dumb with that question, but have no idea what would be available? 

Still keeping you in my thoughts and hoping there will be relief for you.  Dee

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Just a warning, this is long and my way of journaling.  Feel free to skip.  🙂

I wrote my doctor, who I want to find someone else, as I had called for help early afternoon and carried my cell all day as I told the nurse I needed advice NOW.  Got an email back from him late evening saying I don’t have heart failure, get a CT  that was ordered by another doc and we would talk about at our next appointment and he quoted the wrong day.  I’m fed up with the machinery that medicine has become.  My former docs would get interpreted now and then and I didn’t mind as someone was in dire need as I was today.  I guess I have to drop dead get their attention.  Bad saying here, I know and sorry about that.  I’m just so tired and scared that I can’t even work up deserved anger. I get allowed 20 and they stick to it.  How do you cover lots of concerns in such a short time?  

Normally, Dee, one gets put on medication for heart failure.  I have many of the symptoms and while I want to believe my doc, but what if it IS true and I am not getting the proper treatment?  I’ve repeatedly told him in mail (he seems to like practicing that way or sends me to a colleague) about the debilitating pain and he’s offered nothing.  I fortunately have a stash of Vicodin from my former doc as I only took much less than what he prescribed and I wasn’t even close to the pain I am in now.  I don’t want to get hooked on opiates, but there has to be something more than OTC meds.  Gabapentin was offered, but I saw how it mucked up my dog and my counselor said she was messed up by it to.   Walking into walls and such.  

I need a new doc and the task of doing that is going to be so hard.  I’m changing insurance the first of the year so have to update that with every doc I see or their clinic.  This guy couldn’t even get it right when I asked for one med from the express place for a 3 month supply while I have no copay.  He called it in to Walgreens with refills.  I tell him my thyroid numbers and get little guidance as to how to proceed. I know being hypo is affecting everything else happening to me.  

Well, another long babble that gets boring.  Just have to get it out as no one, as usual,understands I don’t have anyone to share my feelings with.  I’m getting so depressed not getting to talk to Steve in the morning.  I always wake up with stuff I so want to tell him.  I sit at night in a fog, lost.  Look at my calendar that are full of times for med appointments.  Wondering which will become another ER day.  I just want to cry in his arms.  Reach over and touch him.  Stop eating alone staring out the window.  Not dread going to bed to do it all over again.  I see my therapist today if I can walk OK but that isn’t helping anymore.  But I can cry there.  Desperation for human contact.

I hope today is the bestit can be for everyone.  

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So they told you that you have CHF but now recant?  I'm confused.  My Jim almost died from that more than once.  They put him on Eliquis  and it costs more than he gets and his ins. wouldn't cover it, it's a good thing he's a veteran as he can get it from them.  It changed his diet too, he can't have greens (kale, spinach, etc.).  Has to do with thinning of the blood I think.  He also had to take it easy, no heavy exertion/lifting.  He was full of water.  The medicines to get that out carry their own problems.  You surely don't have an extreme case like he did or they'd be all over you with their plan.  

But separate issue from what's going on with your legs, right?  I'm sorry you have so much pain.  I have pain in my feet, knees, hands, my shoulder is healing slowly but getting there.  The arthritis scares me as I think 67 is too young to be hit like this, don't know how I'm supposed to live independently with this progressing.  Ahh, back to a day at a time...

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Kay, my two 2nd cousins had the same grandmother that I can never remember her out of a wheelchair.  The arthritis was passed down to both girls.  One has been in a wheelchair as long as I can remember and my closest one has had joint replacements and they had their grandchildren late in life (children later also) so she is too sweet to say no to babysitting.  Husband is 80 now.  I think when it is inherited like that age knows no boundary.  I'm so sorry, they are in such pain.  I know y'all are too.  

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13 hours ago, kayc said:

So they told you that you have CHF but now recant?  I'm confused. 

You think YOU are confused, I don’t have a clue what to think.  Then finding more of my spine is degenerating adds to the heap.  Scheduled for an abdominal CT scan Saturday for the leg swelling.  Have no idea what they are looking for there.  

Saw my therapist today, actually cried like I haven’t cried in months.  I asked him to talk to my ice shrink and he did to tell him that a little more humanism would help.  I had gotten so frustrated calling him this week as he wanted to know what happened and never asks why I feel that way, but what I plan to do.  He even told me to check out Costco for cheaper antidepressants!  I needed my therapist to try and make him see I am more than just a body.  That I had d*mned good reason to be depressed with all the anniversaries clumped together in the festive season.  Watching my last connection to my once family struggle as she will be 15 next February.  Pills aren’t always the answer.  I sure didn’t feel as desperate in the summer when I wasn’t bombarded with memorable days one after another.  I could at least drag myself thru a day at a time as you said.  Have 5 more med appointments til the 13th and then hopefully free from that for a bit.  The pain is a big problem so that will be something that will bring more adventures, I’m sure.  

Marg, it’s amazing to me what has happened, some genetic, some age.  I see people in their prime and remember when nothing slowed me down.  Never could I ever imagined I’d end up like this.  Nor people around me as time and nature spares no one.  Tho I have heard of some going strong in their very later years.  Definitely not the norm.

 

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Gwen, I hope you get some answers and soon.  Doctors need to remind themselves that we're not a truck, like a piece of machinery, that they're dealing with people who FEEL, both pain and emotions.  

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Gwen,

Am worried about you! When is the CT scheduled? One of the symptoms of CHF is fluid retention in the extremities, which you probably already know. It can be helped with Lasix.(I know, another damn pill). Please check in when you can.

WE LOVE YOU!

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Thanks, Karen.  Scan is scheduled Saturday at an awkward time for me.  Well, anytime I have to go for tests is awkward.  So sick of them. I was told it was ordered because I complained of bloating and pain.  Now I’ve been told there could be something abdominal that could be causing the leg swelling.  Guess I better do it.  I’m hoping no pills like lasix as my blood pressure is very low to begin with.  Last time I tried a diuretic I had very bad lightheadedness.  I’m gearing up this isn’t going to be an easy fix.  I could barely get thru my volunteering and a shower today.

i hope everyone else had a tolerable day.  It seems the most we can hope for.  

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9 minutes ago, Gwenivere said:

Thanks, Karen.  Scan is scheduled Saturday at an awkward time for me.  Well, anytime I have to go for tests is awkward.  So sick of them. I was told it was ordered because I complained of bloating and pain.  Now I’ve been told there could be something abdominal that could be causing the leg swelling. 

I’m gearing up this isn’t going to be an easy fix.  I could barely get thru my volunteering and a shower today.

i hope everyone else had a tolerable day.  It seems the most we can hope for.  

Gwen:  Hoping you will have some answers after this test on Saturday.  You are due some answers.  Keeping you in my thoughts. Am always hoping for a tolerable day - One Day at a Time.  Dee

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10 hours ago, Gwenivere said:

Now I’ve been told there could be something abdominal that could be causing the leg swelling.

I hope and pray they find what it is and can offer you hope!  My friend Jim hates the Lasix but realizes this is his way to live now and he wants to live so he does what he must.  I'm amazed at his will to live...this from someone who used to avoid the doctors like the plague and now his life is doctor's appointments.  These seem far from the "golden years" we're told about!

I'm glad you were able to volunteer...we have to have purpose in our lives somehow and it seems that is yours, and I'm sure it means much to those you come into contact with.  I hope you soon get the answers you've long sought.

And I reiterate Karen's words:

17 hours ago, KarenK said:

WE LOVE YOU!

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5 hours ago, kayc said:

I'm glad you were able to volunteer...we have to have purpose in our lives somehow and it seems that is yours, and I'm sure it means much to those you come into contact with. 

Yes, Gwen and kayc,  you both seem to have a purpose in your lives.  I envy that.  Right now the only purpose I can think of in my life is to have another good day with my Maddie and an occasional visit from my two kids and two grand kids.  It is a purpose, but does not fill the emptiness of what my life used to be.  Today is a bright sunny day here in the Pacific Northwest and I should be outside cleaning up the yard before the rain begins this weekend, but find little momentum to do so.   A part of my brain is saying, "What's the purpose, no one cares."   But, Darrell said, "One foot in front of the Other".

Gwen:  Remember you won't be alone on that appointment.  We'll be with you in our thoughts and in our heart.  Dee  

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Dee, my big  purpose is Ally.  The volunteering is so hard now it’s often depressing.  I’ve been lucky so far (knock on wood) to get a space to park by the front door.  If that isn’t the case it’s really tough to add the long walk back and forth.  I sit whenever I can.  I don’t take people back to their rooms anymore, I grab aides.  I used to go to the assisted living cottages to visit some women, but the evil activity director put the kabash on that. 

My only inside visitors are a musician that uses the studio maybe twice a month and more rarely an acquaintance for maybe an hour if we don’t meet at Safeway.  She often cancels for family stuff.  I know the occasional visits from your kids isn’t enough and even if they were there often, they would still leave and we are alone at night.  I’ve long discovered no matter what I do there is no escaping that cold and empty time up to bedtime and waking up to it again.  I had my yard done for practicality reasons.  I wish I did care like I used to but I don’t.  I got tired of stepping in dog poop I couldn’t see and us dragging in debris.  It’s almost like living with no priorities which is not really living.  I can’t remember when I really felt alive fully since the death.

I used to be able to do tests pretty easily.  Now that there have been so many and my body isn’it flexible AND let’s add in I don’t much care about life, but the pain makes me,  they are but reminders of the void in my life and how I desperately want it to end.  No one 'moves on' from the person they lost in their heart, but I read from some how they have at least found new paths to carry that with.  I’m stuck and I have tried to look for things.  I can’t stand, walk or sit for long periods.  That limits.....everything!   I’m an autonomous person, so group things have no appeal.  Plus I have my routines down and no motivation to push past them which is needed.  So to many I look like I am walllowing.  What I am doing is merely instinctual survival.  It sure isn’t from wanting to exist like this.  Is it weakness of character?  Never had it before.  The me I am doesn’t fit into the new holes.  The real me.  I’ve never had to become someone else to enjoy living, do I’m stumped.  Clinging to the past?  Guilty of that.  My tastes of the future over the last few years haven’t being inspiring.  Attempts I’ve made to reach out to others in close connection have failed.  

So tonight I will try and figure out how to make it thru a CT which is not a big deal to other people.  How to balance the anxiety, not eating for nature reasons and how to get sustenance so late in the day and also miss my limited volunteering.  It’s quite interesting that even in a life we hate, we don’t want it jumbled up even more.  Just give me the devil I know for now.  

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6 hours ago, Gwenivere said:

Dee, my big  purpose is Ally.    

I had my yard done for practicality reasons.  I wish I did care like I used to but I don’t.  I got tired of stepping in dog poop I couldn’t see and us dragging in debris.  It’s almost like living with no priorities which is not really living.

I used to be able to do tests pretty easily.  Now that there have been so many and my body isn’it flexible AND let’s add in I don’t much care about life, but the pain makes me,  they are but reminders of the void in my life and how I desperately want it to end.  No one 'moves on' from the person they lost in their heart, but I read from some how they have at least found new paths to carry that with.  I’m stuck and I have tried to look for things. 

So tonight I will try and figure out how to make it thru a CT which is not a big deal to other people.  How to balance the anxiety, not eating for nature reasons and how to get sustenance so late in the day and also miss my limited volunteering.  It’s quite interesting that even in a life we hate, we don’t want it jumbled up even more.  Just give me the devil I know for now.  

Gwen:  Your Ally is lucky to have you as her Mom.  Thank goodness for these fur babies who give us a need to be here.   Sorry to hear your volunteering isn't what it used to be for you.  But, your being there is purposeful for the residents.

I so understand how you feel about yard maintenance....... sometimes the "doggie dirt" is hard to distinguish from fir cones which are in abundance.   When I look outside in my back yard I see tons of work I need to do.  I try to spend just a small amount of time every day when my achy bones allow, but there is no way I can manage it like I used to.   There are many days I say, why should I care.

As I stand at my kitchen window and look across the street to the houses all decorated with Christmas lights I try to imagine what is going to motivate me to at least pull out a few table top decorations so if my kids decide to tell me about their Christmas plans, or should they drop by,  the house needs to look like I care a little.  (I am assuming I might be in their plans, but you know what they say about "assuming").

I agree you have been through numerous tests since I've met you on this forum.  I do hope this is the last one for awhile and some manageable answers will be there for you.  Hoping you get some good rest tonight and get through the CT scan.  Will be thinking about you.  Dee

 

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I am called away tonight...my granddaughter's ballet performance, my son called last night, kind of last minute.  Will be coming home to a cold house and a wood stove to clean out, fire to build.  I don't like these quick trips, his dad will be there all day so I won't be able to spend time with my grandkids, I wasn't able to last time either.  Alas, we grab what we can.

Dee, we're having pouring rain these next few days, no yard work for me, I save it for better weather, it's getting too cold outside anyway.  

Gwen, let us know what you find out, wishing you the best.

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Weather sucks here too, Kay.  Always dies in the PNW as you know.  Dee too.   

I won’t know any results of the scan over the weekend I doubt.  Not unless they post them to my email portal.  The docs are all closed, but a radiologist will review them.  Just not sure I will see that first.

woke up today t see my calf was really red and distorted muscle.  Not just it’s usual round intensity.  There’s something going on in there and I’m getting very scared.  I’m starting to think there may be a couple things going on as the other leg is hot, red and swollen.  If there is an infection it’s been untreated for weeks.  I never feel good, but write it off to emotional crap affecting me physically.  But seeing my leg was beyond even my ability to change the body.  

I’m so sick of this consuming me and dumping on all of you.  Can’t get the pro's to contact me back except saying we’ll talk about it when we meet.  My lung doc never even responded to me after my ER visits to explain the doc talk on them that sounded horrendous.  She her Monday.  

Enough.   Babble mode off for now.  Thanks to all of you.  ❤️

 

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I got the CT done.  What a mess.  I would have nature bathroom emergencies before I went.  I was told by reception I would be drinking a contrast and have to wait an hour for the scan.  Waited a long time and was then told no, it was IV to my relief.  But the tech was a newbie and failed twice to get one in.  Finally an experienced tech did it.  Scan only took about 10 minutes once we figured out how to get it not excruciating laying flat.  I was never so glad to get out of a place.  Told the tech I know others have to learn, but I was the last person that needed that experience.  So now I wait.  

I did my usual grab an advanced Sunday paper and went where I volunteer to visit a resident I am friends with.  Was telling him about 3 appointments I have the week and he thought postponing the dentist would help.  Something I was thinking of doing and even my dentist said it could wait.  Its going to be enough seeing the lung doc and my PCP as I am angry with both for lack of communication we have to iron out.  Tho I still plan to find another PCP next year if he can’t figure this out.  

On the small plus side Starbucks was handing out samples at Safeway where I stopped for a couple of things of a strawberry beverage with no caffeine (one of my enemies with the anxiety) and it was delicious!  Home now and back in the funk.  Too much Xmas around and worried about the results of the scan.  I almost fell in the yard since they added more river rock.  I was tense to begin with.

I don’t do days when things are out of sync well.  I want to hit the shower later but time will tell if I can handle more physical stuff.  I really am at wits end with this.  The despair is crippling.  I want to care about something positive.  Heck, neutral would even do.  

Hope you all have a decent night and Sunday.  Love to you all for your helping gettin me thru this.  It’s a gift I’ll never forget.  ❤️  

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