I turned on the comments again due to the many e-mails I got from the best people in the world...you.
When I think about writing lately it always seems to be so needy sounding. Comes off sounding like I need a lot of cheese with all that whine. I'm not used to being the one who needs. I've always been the one who is strong. Some of the best relationships I have are with people who have needed a lot of support and comfort recently. I guess this turns out to be the time when my problems are becoming seemingly insurmountable. Anyway, Thanks Ladies for the messages and several eye opening e-mails that slapped me upside the head. Left o my own devices, I am the ostrich with my head firmly planted in the sand. Your thoughtful messages pulled me out.
This morning I went to see Roger and there was a sign on the door that said he has an infection and gloves and a gown must be worn. If that doesn't get your mind going in the morning nothing will. One less way for us to communicate...one more thing to worry about. Now I can't even touch his forehead and hold his hand except through plastic....sigh.
In order not to lose what few brain cells I am managing to hold on to I decided it was time to get out the sewing machine and some fabric. I put it all on the kitchen table yesterday and there it sits. I keep walking past the stuff not doing anything with it. Last night I thought about this for a long time. I think that I am avoiding anything that makes me feel good because I feel guilty having enjoyment. Wrap your head around that one. Before all this stuff started happening, I thought I was a fairly normal woman with reasonable thoughts running through my head. Now I am in a daily state of panic due to the many unknowns we are facing. I thought for sure that by the time I was this age I wouldn't have so much to worry about. In the last 3 months most of the things I used to know the answer to have become questions with no clear answer. Having been through hell once in my earlier life should have prepared me for it happening again. It hasn't and I'm in a position where I may find myself without options I thought I had.
I'm going from this to the sewing machine and do something simple. I'll try not to enjoy it!
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Saturday, November 06, 2010
Thursday, November 04, 2010
little update
I closed the comments for the time being. At this point I feel as though you have all sent me a warm embrace with all your beautiful comments and to ask for more time and time again seems like to much. I feel the good vibes and am thankful for the prayers. Please don't stop the prayers.
For now, I will just keep this as a journal of some of the things that are happening. I'm hoping that it will give you an update and let you know what's up. It will also give me an outlet for some of my emotions.
What's up this week has been in some ways a positive thing. Of course, the way things have been going with Roger, positive is a relative term. Last week was a very bad week. There was too much Atavan building up in Roger's system and for many days he just wouldn't wake up. Since he was still intubated he couldn't talk even if he had been awake but not to have him open his eyes at all was very hard. Fluid was building up in his system and he was, once again, massively swollen. The kidneys weren't working and it became a serious problem. Dialysis was needed and done. Some improvement but not enough. They speak to me in hushed tones and hold my hand like a child. Maybe that's because I feel small and ineffectual and am projecting that most of the time. By weeks end the tubes needed to come out of Roger's throat to ward off infection so on Saturday, they did a tracheostomy. After that he began to come around and his eyes opened now and then. He had grown quite the beard with all the hardware all over his face so they offered to have a woman who does such things for the patients shave Roger. He looks like himself again...well sort of. Each day he was a little more awake and trying to communicate. Unfortunately, some of his communications are not so good. He has two good friends from grade school that wanted to come and see him. Every time I mentioned it he would become very agitated and then his tubes would need clearing and he would be nearly choking. The nurses said that it is often the case with people like Roger that they just don't want people to see them like this. Whatever his reasoning, I must abide with it for now. Getting into a major state of agitation is not helpful to him and perhaps when he is better things will change. He even waved off his Brother Bob and more or less told him to go away. Of course he's not going to do that but it was sad nevertheless.
Today I went in this morning and spent some time with him. A surgeon came in to let me know that they needed my signature for the procedure on Monday. He will have a new line put in for dialysis and another pic line for meds. The prognosis for Roger is not great and it depends on who I speak with to what degree I worry. I'm trying very hard to be patient and keeping in mind that it took a long time to get him well enough for rehab before. When Roger asked me where he was today and I told him, I also mentioned that it was November and a kind of frosty damp Thursday outside, he closed his eyes and a tear fell down his face. August seems so far away.
That's where it stands today. I'm beginning to believe that there is hell right here on earth and we are in it.
In brighter news...
James and Dani are coming home from St. Thomas and their honeymoon today. They sent me a couple of pictures. I'm so glad they could get away and enjoy this time with each other. They hit it lucky with their reservation. When they arrived, they were shown to the wrong room and so they talked to the woman in charge and had a nice conversation about their wedding and all that has gone wrong for the family in these last months. They were put into a suite with a huge balcony overlooking a gorgeous bay. People really can be generous and kind. The Concierge has sent hem to several places where they didn't have to spend too much but got great meals.
I can't begin to tell you how much I have missed them. Living without my best friend is hard enough but without them it seems empty and way too quiet.
Give your loved ones an extra hug. Lately all I can think of is all of the things that I didn't do and say when I had the chance. I'm trying to remember that last good day and I can't. Did I kiss him goodbye or did we just wave at each other like sometimes...can't remember. I can remember that he had a few days off and we did some of the things we liked to do together
For now, I will just keep this as a journal of some of the things that are happening. I'm hoping that it will give you an update and let you know what's up. It will also give me an outlet for some of my emotions.
What's up this week has been in some ways a positive thing. Of course, the way things have been going with Roger, positive is a relative term. Last week was a very bad week. There was too much Atavan building up in Roger's system and for many days he just wouldn't wake up. Since he was still intubated he couldn't talk even if he had been awake but not to have him open his eyes at all was very hard. Fluid was building up in his system and he was, once again, massively swollen. The kidneys weren't working and it became a serious problem. Dialysis was needed and done. Some improvement but not enough. They speak to me in hushed tones and hold my hand like a child. Maybe that's because I feel small and ineffectual and am projecting that most of the time. By weeks end the tubes needed to come out of Roger's throat to ward off infection so on Saturday, they did a tracheostomy. After that he began to come around and his eyes opened now and then. He had grown quite the beard with all the hardware all over his face so they offered to have a woman who does such things for the patients shave Roger. He looks like himself again...well sort of. Each day he was a little more awake and trying to communicate. Unfortunately, some of his communications are not so good. He has two good friends from grade school that wanted to come and see him. Every time I mentioned it he would become very agitated and then his tubes would need clearing and he would be nearly choking. The nurses said that it is often the case with people like Roger that they just don't want people to see them like this. Whatever his reasoning, I must abide with it for now. Getting into a major state of agitation is not helpful to him and perhaps when he is better things will change. He even waved off his Brother Bob and more or less told him to go away. Of course he's not going to do that but it was sad nevertheless.
Today I went in this morning and spent some time with him. A surgeon came in to let me know that they needed my signature for the procedure on Monday. He will have a new line put in for dialysis and another pic line for meds. The prognosis for Roger is not great and it depends on who I speak with to what degree I worry. I'm trying very hard to be patient and keeping in mind that it took a long time to get him well enough for rehab before. When Roger asked me where he was today and I told him, I also mentioned that it was November and a kind of frosty damp Thursday outside, he closed his eyes and a tear fell down his face. August seems so far away.
That's where it stands today. I'm beginning to believe that there is hell right here on earth and we are in it.
In brighter news...
James and Dani are coming home from St. Thomas and their honeymoon today. They sent me a couple of pictures. I'm so glad they could get away and enjoy this time with each other. They hit it lucky with their reservation. When they arrived, they were shown to the wrong room and so they talked to the woman in charge and had a nice conversation about their wedding and all that has gone wrong for the family in these last months. They were put into a suite with a huge balcony overlooking a gorgeous bay. People really can be generous and kind. The Concierge has sent hem to several places where they didn't have to spend too much but got great meals.
I can't begin to tell you how much I have missed them. Living without my best friend is hard enough but without them it seems empty and way too quiet.
Give your loved ones an extra hug. Lately all I can think of is all of the things that I didn't do and say when I had the chance. I'm trying to remember that last good day and I can't. Did I kiss him goodbye or did we just wave at each other like sometimes...can't remember. I can remember that he had a few days off and we did some of the things we liked to do together
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