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Do i have the power/ energy ?


nancyl

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so i went and got my blood transfusion yesterday --and today i am scheduled for a ultrasound to see if maybe i need a hysterectomy.. the doc feels i just bleed more than i can make "at that time" - sparing the guys - sorry…

So i feel a bit better but bit is the right word - i was hoping to wake up and jump out of bed… but part of it is - well who else, DAN… Since i hd the transfusion yesterday and worked a few hours and etc. I didn't see him much , what a crab… he refused to eat yesterday ( his favorite way to "show me") and this morning he insisted on a shower at 0600 - knowing full well ( i am probably giving to much credit ) but in my mind i perceive him as knowing - i am very tired still… so i got him up and showered and thought -OK- maybe i can get him out for breakfast before i go to work - or something to "shake it up for Dan " but nope -- just more MUTE miserableness…. - i can do the physical work - but the emotional part of caring for him is very , very hard…. ahy can't he just be nice…and then i answer my own question he has brain damage - what do i expect ?? - we have a large amount of family coming to our area the next 2 weekends.. they will be camping out at april and wades camper - so they won't be here… but if i can't get dan to go - then i will miss out … although i am gonna talk to the home care worker maybe she could come on a sturdy if dan is gonna be tantruming… but i have written this blog before --- what will dan do, how will his mood affect our lives… we just go around and around… and although i wish and sometimes fool myself into thinking he can't control my emotions he still can - very much so, it just makes it so hard to function… grrr.. todays frustration is yesterdays frustration …. nothing changes except the day of the week - and that just keeps coming around to….

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I had the same thing a few years ago, the doc said most women would have gone for a hysterectomy but he fully supported my decision not to. I get sonos every six months instead and we are both comfortable with that. Eventually, with a bit of help from him, it stopped. Looking back, I don't know how I stood it though.

 

I'll PM you with further details, I know the guys are not interested! Hope the rest of it works out though.

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Nancy,

 

The good thing about the days of the week is it turns out to be a day you hadn't seen before so the best to you in this summers beginning of a bit better weather which lifts the body, mind, and your spirits too!! Winters can be long, hard, and cold especially in North Dakota!! It's really time for you to take a vacation but you went back to working and the RV is gone!!!

 

Try to regain the energy and the power will follow cause the body is stronger!!!

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Hi Nancy, I had a semie hysterctomy, I was very tired, and in pain. Best thing i did!

 

So Dan knows how to push your buttons, even with his "brain damage", Can you get your helper to help you out when your family comes. She watch Dan while you spend time with your family. This will give you some "me time" which we all need.

 

Take care Nancy, like we say hang in there

 

Yvonne

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Nancy: good news and thank you for letting us know. I can't stress enough that you have to somehow set a schedule for yourself, based on what you know about your anemia and stick to it! I don't care if Dan throws himself on the floor. Make sure nothing is broken, leave him there and get your lab work done.

 

I am not going to lecture on what you are doing to your overall health. You know as much about this as I do.

 

I do agree with Yvonne. Talk to the caregiver, see if she can give you some extra time off when the family is here. I know you pay privately but maybe there is a little room there for a couple of hours to spend with family.

 

I know you are close to Sarah and have seen what she has to do daily, as a Caregiver. And I ask, can you see yourself there at 10 years post-stroke? We are blessed here to have our Sue and Sarah. Most of our charges are healthy except for stroke and living as a Stroke Caregiver 10 years out is very realistic for a lot of us.

 

I spent an entire afternoon packing up for Bruce to be able to take him out of town for the day for a family funeral. What will Bruce need, what if, how about then? I was exhausting just planning. I had plenty of help getting the WC over the gravel driveways (rural CT) but everyone ran for the hills when he started to choke or needed to toilet. We were out in the humid day and someone actually thought the sweat from his affected arm on his pants was blood and ran screaming for me. And that happens when someone wants to go. I can only imagine if you insisted Dan go what the consequences of that would be.

 

Honey, if he is that tempermental (and we know he is) you are going to pay one way or another. Go and have some fun and enjoy family time. Deal with the issues later rather than sooner. Debbie

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Nancy, in the end do what's best for you and your family. People will tell you that you always have a choice but often a "choice" is nothing more than the lesser of two evils and isn't a choice at all. I agree with Debbie, if you can swing it at all, I would go and have some fun. Dan may act out but in the end it will be good for him too, because he needs a HEALTHY Nancy.

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The health care worker is going to come this weekend -- lucky me /us…. dan has assured me ( in his own special mute way) he won't be part of anything… still hasn't eaten so we left the needle in and will just hydrate through the weekend and address using PNA as his primary need for nutrition -- he won't get much but hey he is not doing much either and it might keep him from going to far down the hill while he works through this latest issue - although how simple would it be if he would just eat??? WTF for lack of better terminology.. who doe this… asking a question i know the answer to… her is last nights "play out" i come home all "chipper" ( put that face on girl right?) and he indicates ( mind you he is still playing mute) he wants to go to the casino - i say yes, then he wants to spend the night there -- i can swing that with the flexibility of my job…. so we hit the road and - NOPE he said ( mute) go back home - i did -- the we get home he says he wants to play cards at our local "hang out " - how pathetic i have one… lol… so i take him to the bar get him up to the table and the bartender comes over and asks do i want a short tea ( one of my only fav. drinks) i said yes, Dan gets mad ( still mute) and indicates i can't have a drink ( believe me i am not anywhere close to a drinker - ask colleen) i decided NO - i am not going to allow this "control " thing to go on.. so he and i left and he went back to bed and has urinated the bed on purpose 3 times and is sorta smug about it ( yes i am gonna get a uti check done) but this is a "testing thing" - i am moving on with my life - i want him to move on with me , but he likes it the way it is - but for the few years of "youth" lol i have left i want to work -- i devoted the last 3 years to him soley and will continue to do the very best i can - but i have drawn a line… it is what it is -- but i did not cause the stroke - neither did he -- but to dwell forever on what you do not have just invites misery and i have lived in misery far to long already… so i am crossing the proverbially tracks and gonna live on the other side of the tracks ( all figuratively speaking) -- i will vista and watch dan from a far and be happy to come and visit when he is happy and pleasant and he is welcome on my side any time -- but the wrong side of the tacks is no place to live…. ( please remember this is just a figurativeley written narrative of trying to cope… ) nancyl

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Nancy: it is a control issue - you know that. He doesn't know what he wants, he only knows what he doesn't want-and that is for you to make choices he feels he has not contributed to. Somehow he feels making choices for you, somehow gives him control back.

 

In a way, it is very sad. Dan seems to feel that his life is gone and your life is the only one he has. You have done everything in your power to give him something, anything for him to grab onto and run with.

 

I certainly agree with your "line" and I do hope there is some positive outcome to all of this. Mary Beth said to me recently "you did not stroke." That is so hard to hear and yes, true. And no, I did not stroke - but stroke is now my life. How does one explain this, especially to someone who has been right on board since day one?

 

I understand exactly what you mean and everyone here certainly does. I think you do deserve some distance on all this. Enjoy your weekend. Hydrate him as need be and walk away. Best you can do. And all of us here will be waiting for your blog about what a wonderful time you had with your family this weekend! Debbie

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Had him checked -- no UTI ( i wish at this point) … but the doc says he has a lot of ketones meaning his body is "eating " itself… but we both feel it best to wait till monday before we start the nutrition hydration ( forgot the name) --- anyhow home health will come and check him out tomorrow and we will see where we end up…. this just sucks --- but it has for a long time already - ( life sucking) my little grasp at normal is tailspinning dan, but what can i do? Nothing except what i am good at make myself ( literally sick) over worrying about him…. geez -- nancyl

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Dan - same as last night except he is just yucky looking -- and the ketones on the breath from not eating - well not pleasant to sleep with…. nothing at this point to say that hasn't been said, tried or done before…..

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and debbie -- it is hard to hear - you did not stroke , it is true, but not true in only a way we understand .. our lives are in stasis and i feel stuck in this "surreal life" --- a reality tv show - could be done about our lives but no one would watch it cause - we are to crazy - somedays… and this week has certainly been one of those….

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Nancy, I went through a similar situation with anemia in my early 50's. The end solution was an endometrial ablation (google it), and that ended my monthly cycles once and for all. No menopause symptoms and life went on without the inconvenience of it all. Of course, several years later Gary had his stroke and all $hit hit the fan, but how else would we have met?! right??? lol I do so understand the control issue. Gary does his share of pouting and refusing - I tell him when he pouts it's a good thing he can't walk or he'd trip over that lower lip. Eventually, he gets over it, but not before stressing me out...............I remember one trip I was going on and leaving him home with a caregiver, so the morning I was due to leave, he deliberately had an "accident" in the bed, and I was stripping bedding, washing sheets, cleaning him up when I should have been packing and getting myself ready to go. I find the less fuss I make over his tantrums, the less enjoyment he gets out of it. Two can play that game! lol (Hugs, sista........I hear you and feel your pain).

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that is kinda how i held out this time --- just ignored it informed it would be dealt with and moved on -- pretending not to care -- finally day 6 of food strike he decides to eat at 11 pm he wants mc donalds … done,,,, this time around and yes i am just gonna get something permeant done about this anemia and before the yr is out as i am sure i have blown through the deductible of 4800 by now any how...

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You know Nancy.... I think sometimes it's better to assume that they CAN help it. No one pulls spite jobs by accident. Maybe you should give Dan the credit that he could understand plainly spoken explanations. I believe when he is doing his refusing and such, to spite me (which he did while you were home full time), I would look him in the eye and say very clearly, "THIS is why I need to work and get time away - I can't take your bad behaviour."

 

I'm not sure if this is what you are hinting at, but I have a friend who had those uh.... what are they called... some kind of simple tumors that cause bleeding and go away when you go thru the change. She had planned to just wait till she went thru it. She was horribly anemic and exhausted and don't know if it played a part or not, but ended up having a serious stroke.

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