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Nothing at all. Just checking back in from Hell..
#1
Hi. Guess a few wondered where I had gone to.ll Well. My computer crashed and that very day I get a letter from my attorney telling to pick myself off...I;m off to Kansas for Surgery or pre of for Talovs Cysts.

Let me tell you. This surgery is no ride in the park and there have been many days,, still that I wish I was just not here. No one really seems to know what to do AFTER Tarlovs surgery, which is where I am now Everything I do, I am at risk, the pain is different, and in different places almost every day and I fall often. Newest trick is pererheral vision is slightly impaired as welll. Left foot. Forget it.

It is really really hard to hold on. I went on fighting thinking I can do this, watch me stand up and be brave, let me show them. I am now a small bag of crumpled paper somewhere dropped on the road now and not many seem to remember I am here at all. When I get up when seeing one of the top doctors I always note that little, " shed a slight tear towards end of discussion." Of course they didn't see me go home and fall apart. Or spend the next few days in bed wrapped in a heating blanket trying to keep pain and bay and to keep warm.

The problem is that the information out there is just so slim and only a few neurosurgeons have even heard of them much less know if they are painful or what. Usual they are called "incidently", llike, oh, the the way my dear.

But my life has been put on hold for over four years now. I do now have home help for little things and shopping, I can't drive yet. But with all of the appt I have I am rushing around and this is the exact thing I should avoid. I do have some wonderful advocates and that helps. But times,, like now, when I wish I could just stop...if it would just not hurt I would be greatful. I have had suggestions of living with my sister for a little while..but that is hard so many states away and she is fine but her husband gets a little weary, though I love him. Then last week it was mentioned our of nowhere, we should think about assisted living!!!! That just ignores the problem....it does't take it away. I know we alll have made changes to our lives that we never thought we would have. How long is it from Hell?
 
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#2
SORRY to see you in such pain but sure is good to hear from you
worry changes nothing prayer changes every thing
 
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#3
oh Bags I am so sorry...you have been delt a rough hand....have you had any good news at all?
........I love cats, I just cant eat a whole one by myself......







 
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#4
Welcome home!

If I remember right you surgery is in Kansas City?

Just curious as I am in the Wichita area.

Have you looked at in home care? Independent Living Centers will provide personal care providers to assist you in your home, and bill your medicare or if you receive medicade you would may qualify for a wavier program.
 
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#5
I believe she was from a cold state like Montana or wyoming
........I love cats, I just cant eat a whole one by myself......







 
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#6
(06-30-2011, 09:17 PM)Bummer Knees Wrote: Welcome home!

If I remember right you surgery is in Kansas City?

Just curious as I am in the Wichita area.

Have you looked at in home care? Independent Living Centers will provide personal care providers to assist you in your home, and bill your medicare or if you receive medicade you would may qualify for a wavier program.

When I came back from KC they did arrange for personal care at home, but since I returned from the Florida pain clinic, they are now wondering what to do next. That pain clinic just made things worse and they now realize their mistake in sending me there. Unfortunately I now have to jump through more hoops to prove I still need home help. I don't have any other insurance other than the workers comp. And I don't qualify for any of the state assisted help because I have not earned enough units with social security. Wonderful. So I am stuck, waiting for my attorney to sort through the mess. In the mean time, he has asked me to consider settling, since we both have noticed a distinct change in the attitude with w/c since my return. He believes, as I do, that they are trying now to find a way to kick me off the system.
(06-30-2011, 10:39 PM)jayne Wrote: I believe she was from a cold state like Montana or wyoming

Yes,, sorry. I am from Montana. Though sometimes I wonder since I've been shipped out of state for treatment so much.
 
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#7
(06-30-2011, 06:38 PM)bagpussinamerica Wrote: Hi. Guess a few wondered where I had gone to.ll Well. My computer crashed and that very day I get a letter from my attorney telling to pick myself off...I;m off to Kansas for Surgery or pre of for Talovs Cysts.

Let me tell you. This surgery is no ride in the park and there have been many days,, still that I wish I was just not here. No one really seems to know what to do AFTER Tarlovs surgery, which is where I am now Everything I do, I am at risk, the pain is different, and in different places almost every day and I fall often. Newest trick is pererheral vision is slightly impaired as welll. Left foot. Forget it.

It is really really hard to hold on. I went on fighting thinking I can do this, watch me stand up and be brave, let me show them. I am now a small bag of crumpled paper somewhere dropped on the road now and not many seem to remember I am here at all. When I get up when seeing one of the top doctors I always note that little, " shed a slight tear towards end of discussion." Of course they didn't see me go home and fall apart. Or spend the next few days in bed wrapped in a heating blanket trying to keep pain and bay and to keep warm.

The problem is that the information out there is just so slim and only a few neurosurgeons have even heard of them much less know if they are painful or what. Usual they are called "incidently", llike, oh, the the way my dear.

But my life has been put on hold for over four years now. I do now have home help for little things and shopping, I can't drive yet. But with all of the appt I have I am rushing around and this is the exact thing I should avoid. I do have some wonderful advocates and that helps. But times,, like now, when I wish I could just stop...if it would just not hurt I would be greatful. I have had suggestions of living with my sister for a little while..but that is hard so many states away and she is fine but her husband gets a little weary, though I love him. Then last week it was mentioned our of nowhere, we should think about assisted living!!!! That just ignores the problem....it does't take it away. I know we alll have made changes to our lives that we never thought we would have. How long is it from Hell?

My friend I read your post and said a prayer for you, for you see at the end of your post I realized what surgery you had gone thru and then said, "Oh crap.". For you see I assisted with such a surgery during college and the surgeon was very enlightening. So I understand, so very much more than most and if I could hold your hand, pray with you, shed a tear, I would, in a heart beat.

But I do see a light at the end for you. I see that it is getting better, after first a disease that most say doesn't exist and then again for a surgery hard to endure. But don't we both see that light? You're getting better, first you're here, that says alot. You're letting us know what is going on. Yes, you'll need care for awhile, perhaps even for longer than that. But you know, that's okay, you've made it this far. As for the surgeon while I was in school, he didn't give much hope for most so you've made it this far and from what I've read you're doing well.

Deep breathe, you're not so far from those who care, if you're in the Kansas area, Bummer knees and I live not too far from where you are. I could go get you in a pinch, but beyond that, always prayers, a supporting you. Just a phone call away. PM me, or something, I'm home 90% of the time, if not me then I can get ahold of someone. You're not alone, we care about you, all of us have been wondering about you, lifting you up.

Bodybuilder1958
 
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#8
Thank you for your prayers. Yes, I have made it this far. But my body is giving in. I have lost over 20 lbs since the surgery. I am now at 80lbs. Very small anyhow. But when I look in the mirror I get scared. It does not help that I know there will be a point when my body will stop responding to treatment. I had a very firm conviction that I will not be alive this time next year. My neighbour told me to just keep being strong. I am ok. In a sense I guess. I can't see things getting any better.

I keep telling myself that I keep going because of my daughter, who is 22 and just moved back home after being pretty much out on the streets after she broke up with her boyfriend. But she has a new boyfriend now, and now they both live here with me. She is an adult now so does not want to spend time with mum. I can understand. I thought well, if she really feels that way, whats the point. I only keep going because of her.

And then just 20 minutes ago she calls from her cell. They are on their way back home after spending the evening with his grandparents and going to church. She told me that she doesn't like church. But she is a born again Christian. Then she broke down and said all she ever prayed for was for her father to come and see her. He went out of our lives before she was born, but did send money to help out. Had to by law. And he kept in touch with me, but did not send her xmas cards etc. So she feels that God didn't answer her prayers. So she does not trust or believe. So now I know she does still need me. I trust in Christ for all things and have done for most of my life even when times have been horribly difficult. I trust Him now. I still don't see being able to physically make it much longer.

I know this probably sounds all too confusing. Thats the way my life is, unfortunately.
 
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#9
(12-25-2011, 12:27 AM)bagpussinamerica Wrote: Thank you for your prayers. Yes, I have made it this far. But my body is giving in. I have lost over 20 lbs since the surgery. I am now at 80lbs. Very small anyhow. But when I look in the mirror I get scared. It does not help that I know there will be a point when my body will stop responding to treatment. I had a very firm conviction that I will not be alive this time next year. My neighbour told me to just keep being strong. I am ok. In a sense I guess. I can't see things getting any better.

I keep telling myself that I keep going because of my daughter, who is 22 and just moved back home after being pretty much out on the streets after she broke up with her boyfriend. But she has a new boyfriend now, and now they both live here with me. She is an adult now so does not want to spend time with mum. I can understand. I thought well, if she really feels that way, whats the point. I only keep going because of her.

And then just 20 minutes ago she calls from her cell. They are on their way back home after spending the evening with his grandparents and going to church. She told me that she doesn't like church. But she is a born again Christian. Then she broke down and said all she ever prayed for was for her father to come and see her. He went out of our lives before she was born, but did send money to help out. Had to by law. And he kept in touch with me, but did not send her xmas cards etc. So she feels that God didn't answer her prayers. So she does not trust or believe. So now I know she does still need me. I trust in Christ for all things and have done for most of my life even when times have been horribly difficult. I trust Him now. I still don't see being able to physically make it much longer.

I know this probably sounds all too confusing. Thats the way my life is, unfortunately.

It's not confusing, sounds like two different adults trying to deal with what life is giving them. The difference is knowing where to reach out.

My mother made it thru a similar surgery to yours, she went down much lower in weight than you have. It's not weight, it's spirit, knowing who to lean on, where to turn. I don't know but perhaps it's time to turn to them who trust more in the Lord than your daughter and pray that in time (and it will happen) that she will come back. For in truth, thru it all you have been there for her.

316-393-#$%^, if I don't answer, leave me a message.
 
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#10
Bag we are always here for you one of us will get back to you just PM us a phone number and we will call you....we will pray with you and for you what ever you need...just ask and we will do our best
........I love cats, I just cant eat a whole one by myself......







 
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