Good day Bad day?>?
Today has been both good & bad. I think that is the way for most, some good, some bad. I got over my upset from yesterday. I had an appointment yesterday & when it was done I stopped by home on my way back here. Bruce the sweet man that he is sewed my nighty. It took him two hrs & he did a beautiful job. Now what man would sew for two hrs just so you can have your favorite nighty. His shoulder was sore from the way he sat while sewing so I rubbed it for him. He is a bone rack. His cloths hide it & with his belly soo big he looks pregnant (from fluid retention). He can not eat. He has sooo much fluid on his belly & chest that when he eats he can not breath. He was very bad a few weeks ago & it turned out to be one of his med's he was on was putting more fluid on. We talked about it today. He says he is getting better, how ever slowly. I told him how much he is worrying me & he promised he was getting better & he is eating more. I am not going to push him. I have been asking for a BBQ (one that uses charcoal) he went out & got one today. As soon as it warms up we are going to start to use it. I have decided to cook more food then we need for a meal then he will have leftovers. It is hard to know how sick he is. He will not accept help (home care). But his weight is coming down so the fluid must be coming off. While he is thin he could walk better yesterday, he was not gasping for air as much. I talked to my therapist about him today & have decided to take the same view with this as with the MS. I am going to try not to focus on what I can lose. Or to get lost in memories of what things were like & should be now. I am going to try to enjoy the moments we have now. That is all any of us have.
I started the training for the crisis line tonight. It went well. It was nice to be treated like a reg person. All of the other volunteers were great, the chair is a non-issue. The hrs will work out great. T said we can pick & choose our shifts to be on-call. We were told nights went first as women with jobs could do them. I can not do nights b/c I need sleep & my therapist told me I could not do them. So the day shifts are the hardest to fill & that is the time I am available. So that works out great. Besides the crisis line they provide accompaniment to hospital / police station / court. I asked about doing some of them & not all. B/c of accessibility issues I could not do this on short notice. But going to court I could do. T said that would be fine. It feels soooo good to find a place that treats me like an equal & appreciates what I can do for them. To be given the rights & responsibilities of everyone else. It really does feel good to be accountable to someone (it is hard to explain)
I had a good ride to the CI training. It is not quit yet warm but with what I was waring I was warm. It was a sunny evening & I enjoyed it. The training went well & I met some great women. I stopped to get a coffee on the way home. I was in a great mood when I came back. I have a super-pubic catheter. I had a leg bag on (I use one when I go out) & it was full & I had to pee. For a super-pubic catheter they punch a hole just above your pubic bone into your bladder. So when you have to pee & there is enough pressure on your bladder you pee out of the super-pubic site. I had to pee the whole way back here & I was afraid I would not make it back without an accident. As soon as I did get here I asked one of the nurses if she could empty my leg bag. My nurse was on break but they always have a nurse to cover if you need anything. I told her my leg bag was full & I had to pee. When I asked she told me she was handing out her pills & she did not want to. That really upset me. I do have the over emotional thing from the MS (the Canadian MS society calls it emotional incontinence). My nurse returned in 10 min's so I did not have an accident. Because I was upset she asked what was going on. She could not believe it, that is why they always have a nurse here. They cover all patients so you do not go without care. I think the reason I got upset, I was normal for a few hrs then to come back & be dependent on someone who could not care less. To be reminded that I do need help. Still I consider it her problem not mine. I finally believe I deserve care just as much as anyone else. That it is the nurses job to provide that care, even if they are having a bad day. They do not have to like me but they still have to do their jobs. Bruce has been telling me that for as long as I have been here it has just taken me this long to believe.
I calmed down quickly. I was never really that upset I was just crying. I called Bruce & we had a good talk. I was able to tell him how worried I have been & he promised to do better at taking care of himself.
So good day bad day. But I think mostly good. What went not so good I handled.
I started the training for the crisis line tonight. It went well. It was nice to be treated like a reg person. All of the other volunteers were great, the chair is a non-issue. The hrs will work out great. T said we can pick & choose our shifts to be on-call. We were told nights went first as women with jobs could do them. I can not do nights b/c I need sleep & my therapist told me I could not do them. So the day shifts are the hardest to fill & that is the time I am available. So that works out great. Besides the crisis line they provide accompaniment to hospital / police station / court. I asked about doing some of them & not all. B/c of accessibility issues I could not do this on short notice. But going to court I could do. T said that would be fine. It feels soooo good to find a place that treats me like an equal & appreciates what I can do for them. To be given the rights & responsibilities of everyone else. It really does feel good to be accountable to someone (it is hard to explain)
I had a good ride to the CI training. It is not quit yet warm but with what I was waring I was warm. It was a sunny evening & I enjoyed it. The training went well & I met some great women. I stopped to get a coffee on the way home. I was in a great mood when I came back. I have a super-pubic catheter. I had a leg bag on (I use one when I go out) & it was full & I had to pee. For a super-pubic catheter they punch a hole just above your pubic bone into your bladder. So when you have to pee & there is enough pressure on your bladder you pee out of the super-pubic site. I had to pee the whole way back here & I was afraid I would not make it back without an accident. As soon as I did get here I asked one of the nurses if she could empty my leg bag. My nurse was on break but they always have a nurse to cover if you need anything. I told her my leg bag was full & I had to pee. When I asked she told me she was handing out her pills & she did not want to. That really upset me. I do have the over emotional thing from the MS (the Canadian MS society calls it emotional incontinence). My nurse returned in 10 min's so I did not have an accident. Because I was upset she asked what was going on. She could not believe it, that is why they always have a nurse here. They cover all patients so you do not go without care. I think the reason I got upset, I was normal for a few hrs then to come back & be dependent on someone who could not care less. To be reminded that I do need help. Still I consider it her problem not mine. I finally believe I deserve care just as much as anyone else. That it is the nurses job to provide that care, even if they are having a bad day. They do not have to like me but they still have to do their jobs. Bruce has been telling me that for as long as I have been here it has just taken me this long to believe.
I calmed down quickly. I was never really that upset I was just crying. I called Bruce & we had a good talk. I was able to tell him how worried I have been & he promised to do better at taking care of himself.
So good day bad day. But I think mostly good. What went not so good I handled.
Replies
You are handling things so well, putting things in perspective. I can understand how frustrated and anxious you must have been. Ten minutes is a long time to wait for the nurse. That\'s a long time for anyone to wait to pee even if they have a good bladder! Any healthy person would be doing the pee pee dance down the halls, dribbling as they went.
My Sisters stopped by for a brief visit yesterday and asked about you. They send you their love.
Gentle hugs and joined at the heart, Linda
I keep trying to write a comment, but have deleted three so far. I just can\'t seem to word my thoughts how I want them, lol! The bottom line is that you are so inspiring to me. Your attitude always makes me stop and think about my life, my blessings and how can I show more gratitude for what I have. To focus on the moments we have right now... That\'s what I\'ve been working on lately too. I\'m always humbled by your strength. And like Linda said, anyone healthy or disabled would have an issue waiting 10 minutes if they had to pee! I\'m pretty sure I would have had an accident /:
I think you are going to be awesome on the crisis line, you will help so many. I know you help me, just by sharing your story here, thank you!
~Tracy
To me waiting the ten min\'s was not the issue. It was the nurse that was covering not doing her job. The nurses supper break is 45 min\'s. What would have happened if my nurse just left for her break & I had to wait that long. It was good that I only had to wait the ten.
Thanks for your comments. Getting support & understanding helps me to get through my day. You guys help me sooooo much
You know Kayce, you are right. The nurse should have been doing her job, and not treat you the way she did. I\'m glad your regular nurse wasn\'t happy about what happened.