Reflections and musings

[iPraiseHim]

13 hours ago, Marg M said:

I'm hoping they can help.  It really makes his girlfriend (been together nearly 10 years) put ear buds in her ears to drown out the noise.  He is really loud..  I used to type the polysomnograms and they were so boring it was like watching paint dry.  Can you imagine all these people who do all these jobs we just cannot understand anyone wanting to do, but where would we be without them.  So glad it helped George.  I am afraid he just might quit breathing with the sleep apnea and not wake up.  So is his friend.  He does quit breathing for seconds sometimes.  

I had a good friend died in his sleep several years ago.  It is important to get it checked and treated. My BIL has sleep apnea and will not use the machine.  There are different types, systems and masks.  Some people don't like the mask on the face, etc.... It does help some people.  I am overweight which contributes to the sleep apnea but skinny people can have the problem to since it is caused by a narrow wind pipe that collapses when you sleep.  I hope I could lose enough weight to not need the CPAP machine. 

If you have trouble using the machine, ask the technicians to turn up the RAMP setting to 30-40 minutes.  The positive air pressure builds gradually allowing you to fall asleep. My pressure is set at 16.  If the pressure is too high to tolerate then ask the doctor to set the MAX pressure lower to say 8 .  As the person gets used to it then they can gradually increase it to the recommended level.    Common sense practical application of the technology.  Otherwise, people will not use it.  I have several clients who gave up trying to use their machine and are at risk of sleep apnea related death.

Unfortunately, my wife would not use her CPAP machine  until she had to.  I found out that extended untreated Sleep Apnea  is the contributing cause of Pulmonary Hypertension. Pulmonary Hypertension means that the blood pressure in the lungs are elevated and causes more and more difficulty breathing.  This was the reason she needed to be on Oxygen. The Oxygen/CO2 exchange was hampered by the Hypertension. Once you have it there is no cure except a lung transplant.  After my wife died, suddenly, I found out that 50% of patients with Pulmonary Hypertension die with no warning.

Please encourage your friends and family to get their sleep apnea treated before it leads to further problems.    - Shalom 

[DaveM]

2 hours ago, iPraiseHim said:

 I found out that extended untreated Sleep Apnea  is the contributing cause of Pulmonary Hypertension...   After my wife died, suddenly, I found out that 50% of patients with Pulmonary Hypertension die with no warning.

George, I have been mostly on a CPAP going on 10 years this fall. There are nights I just can't stand it and rip it off, but I try to use it most every night. I definitely wake better rested when I have slept in it. Having issues with the mask, and can't afford another right now, so just have to tough it out. After reading your post, I will try harder to deal.

My Dana had chronic asthma all her life, and I am certain that was a big contributor to her sudden death. But she snored as often and as deeply as I do. And when with her I did notice she seemed to me to have Sleep Apnea symptoms. I discussed with her, but she would not even consider anything like a mask over her face, with her asthma.  She was malnourished, had been through pneumonia the previous month, and other issues resulting from the fall and breaking her neck last summer. So the Pulmonary Hypertension that you describe could well have been the last straw. Of course, I will never know. All of us here have way more unanswered questions than answers.

[iPraiseHim]

On 3/19/2017 at 6:34 PM, DaveM said:

George, I have been mostly on a CPAP going on 10 years this fall. There are nights I just can't stand it and rip it off, but I try to use it most every night. I definitely wake better rested when I have slept in it. Having issues with the mask, and can't afford another right now, so just have to tough it out. After reading your post, I will try harder to deal.

My Dana had chronic asthma all her life, and I am certain that was a big contributor to her sudden death. But she snored as often and as deeply as I do. And when with her I did notice she seemed to me to have Sleep Apnea symptoms. I discussed with her, but she would not even consider anything like a mask over her face, with her asthma.  She was malnourished, had been through pneumonia the previous month, and other issues resulting from the fall and breaking her neck last summer. So the Pulmonary Hypertension that you describe could well have been the last straw. Of course, I will never know. All of us here have way more unanswered questions than answers.

Depending on what your pressure settings are. You may try the

AirFit™ P10 nasal pillows system 

I really liked that one but my pressure was raised and they kept breaking their seal.  Also, as I mature apparently my mouth drops open unless I wear a chin strap.

One of the lessons I am learning from this grief is that I need to take care of myself as much as I did her mother and my wife. Many times I don't FEEL like it but I push through and do it anyway. I strive to practice what advice I give. - Shalom

 

 

 

 

[Cookie]

Gin:  Yes, you are allowed to be grumpy.  I can relate to the tinted lens thing.  No matter what I do, even when I'm seemingly happy, laughing, etc., inside I'm not really right and have this constant sorrow that shades everything.  It is alarming to me sometimes.  It causes me anxiety because I start wondering if I'll ever really be content again.  I remember what it used to be like to feel that....oh, I miss it so much, miss John.....anyway, I can relate to you Gin.  This is so hard.....thanks for all the input on sleep aids.  I will keep trying.  I have a yearly physical coming up in a week and will talk to my doctor about it.  I guess I feel a little hesitant to do that because it's been 21 months and I feel like she'll think I should be doing better.  But, she hasn't lost her dear husband.....Cookie

[Margm]

The thing that surprised me, still does, was the anxiety and depression I felt for feeling I was too dependent on this forum.  Then the old saying "misery loves company" came to my mind and that seems so cruel.  I do not love your company because of your hurt and pain, but maybe sharing the hurt and pain and knowing other people feel that way, maybe that is the same thing.  

But, why would I let go of a life preserver if I cannot swim.  

I will take my granddaughter to school and my "resourceful" daughter has me going to look at a house in a neighboring town that she might move back to.  And life goes on.

Brad, I don't know when you are leaving, I might have to read backwards to find out because memory serves me not at all.  

[Brad]

Marg -

I leave in two weeks and will be gone for two months.  I'll check back in when I return.

[Margm]

Brad, I hope you can find some peace during the trip.  I know traveling without them, without them seeing the same things you see, I know it is going to take an extraordinary effort on your part to separate the pretty from the beautiful, the moderately interesting from the magnificent.  I know it will make a difference, but the length of time you will be gone, then maybe your mind can sort things into some sort of interesting trip.  Billy never believed in the supernatural in any way.  I used to.  I used to believe in magic and even a little bit of the supernatural.  Billy took that with him, and I wish he would bring it back to me.  I hope your trip turns out to be wonderful.  

[Cookie]

Me too, Brad....safe and magical travels to you.  I hope to travel before I'm done.  Have an old school exchange student friend in England I would love to visit.  Hopefully, I'll get there while I can still walk......

[Gin]

The weather is good.  The hyacinths and daffodils are blooming...and I just don't care.  No desire to work in the garden.  Can't appreciate Nature at all.  Not without Al.  Since that won't be, I just do not care about much of anything.  Lousy attitude, but that's where I am at.

[Gwenivere]

Know what you mean, Gin.  Our gorgeous flowering plum tree took me 3 days to notice it and it's big and in the middle of our back yard.  Seattle is full of flowers, but all the gloom from storm after storm makes them seem to disappear.

[Margm]

I cannot remember when there was no Billy.  I know I must have enjoyed the beauty of spring and especially the beauty of autumn.  He left me in autumn, the time we would have been taking pictures.  I don't see autumn.  I understand where you both are coming from.  The flowering trees, the bushes, the fluorescent green of the new leaves.  With Billy looking too, they were beautiful.  Without him, I notice them, I think they are pretty, but they will never be as lovely as they used to be.  

Still looking for my green folder..  I found my hospital bill from June of 1962, giving birth to Scott.  They kept us four days cause I had a little trouble.  Total bill, including circ for baby boy was $126.50.  

[Autumn2]

2 hours ago, Gin said:

The weather is good.  The hyacinths and daffodils are blooming...and I just don't care.  No desire to work in the garden.  Can't appreciate Nature at all.  Not without Al.  Since that won't be, I just do not care about much of anything.  Lousy attitude, but that's where I am at.

The daffodils are blooming...but HE planted them...so not so much beauty now. Just shows you everything keeps going on...

[scba]

I feel the same about each thing that is in my new life. I notice, I acknowledge, it ends there. Feels like living on the surface of things and nothing gets deep inside of me. 

Nice life!

"What are you doing?"

"I'm fooling myself"

[kayc]

It snowed yesterday morning, yesterday afternoon, and yesterday evening, but I'm not complaining, it didn't stick!
Marg, I've got you beat, I ran across my son's hospital bill from 1984, it was $6 and only because I got a private room!  My daughter cost more, we had different insurance then.

[Gwenivere]

It's another Saturday night alone.   Our good Groundhog Day tradition was date night.  It's been almost 30 months.  I sit here now almost all the time so aware I will not see him again here.  I can't get the thought out of my head.  We all know it.  I'm trying to figure out why it has become almost obsessive thinking now.  I know it would help if I felt healthy.  The combination of various maladies that now are my companion from waking to bed make it hard to get outside myself.  And then I wonder if I would even feel this bad had he not left.  How did I get to feeling so old in just a couple of years?  

After all this time, I still can't figure out how I will live without him.

 

[Margm]

3 hours ago, Gwenivere said:

 How did I get to feeling so old in just a couple of years?

Oh Gwen, the thing that would make Billy angry was to insinuate he was getting old.  And yet we were, but I didn't think about it.  Now that he is gone, it is my main thought.  I wake up every morning and know I cannot go back to sleep, I think "what is new with this morning" and I know nothing is new.  It is all the same, same morning over and over.  I guess I could look at the news and see if we are bombed or if we have bombed.  Don't want any more people dying and I keep hearing my Missionary Baptist preachers say "wars and rumors of wars" but you know what?  That has always been.  I hope the world last long enough for my granddaughter to have a life, and a happy one.  Just what I wish for all of us...........but wait, we used to have a happy one.  I have known happiness, but she never has, not the true kind.  

[Margm]

I am getting rather paranoid about where to put something.  You know sometimes my mind goes all over a page.  I see that blank space and I have to fill it even if, like a basketball, it bounces from one wall to the other.  

This morning in reading Megan's "Refuge in Grief" I am reminded of what some of us are reading now.  Talked at great length about it in one of my salad posts.  But, reading this, this morning, I believe I am not much different.  Billy and I both read a lot.  Honestly, when we were first married he was jealous of the attention I paid my books when I should have been paying attention to him.  Eventually, I guess he figured "if I cannot beat her, (figuratively), then I must join her. "  I was not jealous.  He became a monster reader.  His reading began about 9:00 p.m. and did not end until as early as 2:00 a.m., sometimes longer if he could not put the book down.  I am a morning person, but he might not wake up sometimes until 11:00 a.m.  (Ready for breakfast at lunch time), but that first meal had to be breakfast, no matter what time.  I have all of his books yet to read.  I will read them for him, and for me.  I have not been ready to read them yet.  It is going to be a pain I did not want to address yet, but I will.  I have not quit reading, but I have so many paper books and so many Kindle books on grief, how grief leads other's lives.  I've got to quit that and start living/reading Billy's books.  I love them too.  This below is part of Megan's column this morning/or last night.

From Megan: "Early in my own grief, I was ravenous for words. The whole world had just exploded, and I needed someone to talk to me in that. Not just anyone, of course: my tastes in reading remained as they were before grief erupted into my life. Self-help books and platitude filled daily journals were never going to cut it for me.

The books that worked for me were the ones that reached into the very core of where I was and spoke to what was broken. I read mostly memoir, occasional books that spoke of the wider, unknown universe, and many, many first-person accounts of devastating pain.

Those were the books that moved me: personal stories of pain - often pain without eventual "redemption."

I don't want to get interested in world events, this is something I don't want to form an opinion on.  I ride the fence on politics.  I like fiction.  I need to visit with the first book of Mr. Box on Joe Pickett.  I have read it before, but it will be new again with my faulty memory.

[kayc]

I try to keep up on world news but my sister prefers to bury her head in the sand...different approaches to the situation.  We have to handle things how we feel best for us and that might change from time to time.  Sometimes I feel the need for a break as a diet of bad news can bring despondency, especially when it's out of our hands to control.

I don't feel the need to fill blank pages with anything.  I just want a cup of coffee and another hour of sleep.

[Gwenivere]

I'm sitting here another late night trying to make sense of my life.  It seems late nights I am more accepting Steve is gone.  I've made it thru the day again leaving only an hour of two til I can go to sleep and start over interacting in the world I don't belong to anymore.  When I was volunteering yesterday a staff friend commented I seemed better than a year ago when I could hardly talk about Steve without tears.  I told her I've been working on my mask.  That as more time goes by I need it because people rarely even remember that my life alone is so much different.  That I take it off when I get home.  It's interesting how I am now asked my plans are for the night and I dance around it with my plans for dinner rather than It will be sitting alone with my TV roommate and playing games on the iPad to kill time.  How when I do watch something I've rented or recorded I have no one to talk to.  How doing the usual chores I do only for me now with little satisfaction I am caring for a real home.  I do it now because of dogs, bad weather and allergies, not because it makes it warm and cozy for us.  How it takes everything I have in me to muster because I don't want the grief to make this place worse by looking as bad as I feel.  How emptying the laundry or dishwasher there is neve anything of his in there anymore.  How every time I open the fridge how much barer it has become without his stuff I didn't care for.  How when I wake in the morning his side of the bed will be pristine from non use.  I will eat lunch alone, do what is planned for the day and come home to the emptiness.  How I have to really think what day it is because they are all the same over and over again when I wake.  A sense of fear, sadness and can I do it again.  So I'll have a glass of wine now and see if it brings relaxation or tears.  I'll go see my counselor today and once again see if we can find a reason for me to keep doing this and how my once home became a prison of memories.  How prisons are cold and no matter how pretty they look, you are wearing that orange jumpsuit whether anyone can see it or not.  

I have a feeling which way the wine will take me tonight.  While counseling helps, I'm so tired of talking about it as the 'high' point of my day when it used to be playing with the dogs and whatever each day with him in it just happened and was enough.  

Cheers Steve.......I miss you so much going to sleep knowing you were in the world.

[kayc]

Odd you should mention the mask...our sermons the last month or two have been on taking the mask off, being authentic with people, that it's okay to not be okay.  We have been working on getting real with each other, and you know what?  I feel closer to the others now.  I've been in a couple of different groups...the grief support group, my group on Saturdays (started out as a Restoration Class but that ended and we continue to meet) and also a ladies group that meets on Fridays, and I'm building closer relationships.  It's still hard for me, it takes so long to build a true friendship.

Gwen, I do think you're doing a little better, it's hard to see yourself when you're in it, the change is almost imperceptible when viewed day by day, that doesn't mean it's easy or you're over it, that will not likely happen, but just "a little better".  I guess that's something!  With me, it seems so long since I've seen George's food in the refrigerator, I don't think anything when I open it now.  I guess in that sense time does help some.

[Gwenivere]

It always perplexes me these days when people say I am doing better when I feel worse than I ever have.  If they see something I don't, I wonder why I don't feel it at all. Going to have to some thinking on that.  

[kayc]

I think it's like you said earlier, you've honed your mask.  They aren't seeing what you're feeling.  At some point we get tired of telling people how we feel because we think they'll get tired of hearing it and avoid us...and we're probably right.  A true friend would stay and care and listen no matter how long it took, no matter how unpleasant it might be.  Now how many of us think we have true friends?

[Margm]

Well, I have lots of "friends" or maybe acquaintances.  I don't make a habit of talking but to 2-3 of them and a couple of cousins.  My sister helps.  I am very worried about her right now.  She had female cancer also.  Past three days she has had pelvic pain and swelling to her hips.  No, she did not go back for her followups.  I am worried.  My daughter is taking chemo for the non-malignant tumors in her head.  They do not spread like cancer, but they do grow, like blowing up a balloon, and if you cannot stop that, shrink them somehow, the results are not good.  She has a partner that takes such good care of her and is so devoted to her she will do any thing for her.  But, my daughter wants her mama, who is taking care of her daughter.  Last week Bri, me and Ferris Yaris swam out of Texarkana.  Today we swam out of Junction City, AR.  He is such a good little car.  No water inside so he does not leak.  He's young yet though, one day he will leak.  

Ya'll, we are all in this fight together.  Bitch away.  Lots of crazy people out there.  Some of us enjoy it (being crazy part), hey, it's the only fun I've had in awhile.  Even being so forgetful.  It did sort of frighten me but when someone asks you where or what and all you have to say is "I don't know or I don't remember."  Problem solved. 

So, no matter how much you hurt, even if you have five seconds of clarity, enjoy it.  If you don't want to answer questions, ask them why they want to know, if that is the disposition you are in.  Or just say "I'm fine" (so we lie ever so often), and you will find out that satisfies most people because most people really don't want to know...........until it happens to them.  

 

[Dr Lenera]

On 5/2/2017 at 10:35 PM, Gwenivere said:

It always perplexes me these days when people say I am doing better when I feel worse than I ever have.  If they see something I don't, I wonder why I don't feel it at all. Going to have to some thinking on that.  

They say that to me too. probably because I've tired of boring people about how I feel and have got a little better at putting on a false, happy[ish] face. They mean well, but just know the half of it.

[Margm]

5 hours ago, Dr Lenera said:

They mean well

"They" do not matter.  All that matters is yourself.  Just smile at them and say thank you or say "I'm fine."  It is a lie, but just like in that movie with Jack Nicholson, you cannot yell at them and say "YOU CANNOT HANDLE THE TRUTH" because they cannot handle our truths.  So, give them the little lie.  You meet someone on the street that you have not seen in awhile and they say "how are you doing?"  They really do not want to hear how you are doing.  They are just acknowledging you are there and they are there.  

That is where WE come in.  We know the truths.  We know how hard to handle the truth is.  I'm not gonna lose any sleep because I told Tom, Dick, or Harry that I am fine.  And, they are not going to lose any sleep over me one way or the other.

Advice is something everyone has to give for some reason.  My sister is wanting me to change insurance that I have had all my married life.  It is not too expensive, it pays fast and I am not out too much money that Medicare and my insurance does not pay.  But, she has found insurance that pays "everything."  To begin with, I would not meet their qualifications.  But she was insistent.  Again, a well meaning person who almost got in a fuss with me because I won't change.  In this time of government upheaval, I am not giving up something that works.  

Don't worry about other people and how they think, or the advice they give that is not asked for.  Just worry about yourself and don't have hard feelings about someone that is inquisitive.  Tell them "I'm fine" and let it go.  Right now, you have this forum to come to that will go along with you in your feelings because if we have not faced it ourselves, someone on here has.