I really wanted to start this blog on my new computer and program, bux and falkor, on an upbeat note. However I've been having a hard time thinking of something upbeat talk about. It seems my entire support system is crumbling around me. But I did think of something very positive
I have the world's best PCA. It is my 22-year-old son. Now of course he can't really help me shower and I have to have a few other people help me with that one but that's okay, he more than makes up for it. He is a full-time college students and in a very small and difficult College in St. Paul Minnesota. Zev has been putting in 21 hours a week, now he's putting in 40. As soon as I find another PCA he'll cut back to about 30-25 hours a week. My son Zev has been amazingly supportive, I know it cannot be easy on him trying to care for his mother when he's only 22 and I am only 53. On top of that of course is personal issues, and boundaries sometimes getting crossed, but we've gotten pretty good at stopping each other when we get to those boundaries. I can't tell you how many times in the last six months he's had to pick me up and literally put me in bed. He also has me on this wonderful workout routine, I have never been sedentary I've always walked even within two hours of surgery. But the last six months that this pain clinic has pretty much Me bedridden. So he's trying to get me up and going again and I am more than grateful. He started me at 5 min. at .5 mi./h two weeks later, I am up to 9 to 10 min. at .9 and for part of that time were doing a hill type effect ,okay so it's only .1 but it's a start. He takes me to doctors appointments, boy does he hate that. He cleans the house, does my laundry, cooks food. things I did for him for about 15=20 years. It can be kind of hard at times, knowing that this is not the way it should be. But this is the way it is and I am so so grateful for all his support,help, love and understanding. This must be really hard for him. And to top it all off, this ridiculous government has decided that family members should only receive 80% of what the stranger would get. When a family member gives you 150% of their time and energy, and a stranger walks away after a few weeks. And then after all of that we were with the PCA company that did not tell us until the last month that he only had eight hours a week for the rest of that month. And that's not the first time they've done it to me. So we switched companies, this one I had been with for 10 years so I decided after the other company was so bad it was time to switch back to the really good one. Turns out they're not so good anymore they just said it took my doctor a month and a half to return the order for a PCA. I know for a fact that cannot be true by doctors very good at responding to requests, he also knows how badly I need help.
So what I want to say in this blog, is how grateful I am to my son for being there for me when I know it can't be easy, and he would probably have been happier staying at the University library checking out book's. But I am also grateful to my daughter for all the support she gives me when she can. And my husband who has been standing up to doctors for me lately, it's not in his nature to do that, so I know it can't be easy for him.
Thank you to everyone, firstly my family, secondly my friends, and yes Face book as hokey as that might be,in being there and helping me through this nightmare that society has put out for me to struggle against. Sure would be nice if they would be there for me instead of making everything a fight, but that's the way it is in society today ,there is no heart left, the person is always the lowest denominator. Except when it comes to family then we are the highest denominator. I love you all, I know it's not easy, I am grateful from the bottom of my heart.PS, that was fun, it took me 15 min. instead of two hours to do this blog so I guess I want to say thank you to Bux and falkor.
I have the world's best PCA. It is my 22-year-old son. Now of course he can't really help me shower and I have to have a few other people help me with that one but that's okay, he more than makes up for it. He is a full-time college students and in a very small and difficult College in St. Paul Minnesota. Zev has been putting in 21 hours a week, now he's putting in 40. As soon as I find another PCA he'll cut back to about 30-25 hours a week. My son Zev has been amazingly supportive, I know it cannot be easy on him trying to care for his mother when he's only 22 and I am only 53. On top of that of course is personal issues, and boundaries sometimes getting crossed, but we've gotten pretty good at stopping each other when we get to those boundaries. I can't tell you how many times in the last six months he's had to pick me up and literally put me in bed. He also has me on this wonderful workout routine, I have never been sedentary I've always walked even within two hours of surgery. But the last six months that this pain clinic has pretty much Me bedridden. So he's trying to get me up and going again and I am more than grateful. He started me at 5 min. at .5 mi./h two weeks later, I am up to 9 to 10 min. at .9 and for part of that time were doing a hill type effect ,okay so it's only .1 but it's a start. He takes me to doctors appointments, boy does he hate that. He cleans the house, does my laundry, cooks food. things I did for him for about 15=20 years. It can be kind of hard at times, knowing that this is not the way it should be. But this is the way it is and I am so so grateful for all his support,help, love and understanding. This must be really hard for him. And to top it all off, this ridiculous government has decided that family members should only receive 80% of what the stranger would get. When a family member gives you 150% of their time and energy, and a stranger walks away after a few weeks. And then after all of that we were with the PCA company that did not tell us until the last month that he only had eight hours a week for the rest of that month. And that's not the first time they've done it to me. So we switched companies, this one I had been with for 10 years so I decided after the other company was so bad it was time to switch back to the really good one. Turns out they're not so good anymore they just said it took my doctor a month and a half to return the order for a PCA. I know for a fact that cannot be true by doctors very good at responding to requests, he also knows how badly I need help.
So what I want to say in this blog, is how grateful I am to my son for being there for me when I know it can't be easy, and he would probably have been happier staying at the University library checking out book's. But I am also grateful to my daughter for all the support she gives me when she can. And my husband who has been standing up to doctors for me lately, it's not in his nature to do that, so I know it can't be easy for him.
Thank you to everyone, firstly my family, secondly my friends, and yes Face book as hokey as that might be,in being there and helping me through this nightmare that society has put out for me to struggle against. Sure would be nice if they would be there for me instead of making everything a fight, but that's the way it is in society today ,there is no heart left, the person is always the lowest denominator. Except when it comes to family then we are the highest denominator. I love you all, I know it's not easy, I am grateful from the bottom of my heart.PS, that was fun, it took me 15 min. instead of two hours to do this blog so I guess I want to say thank you to Bux and falkor.
Thank you for the kind words Lynn and I think I speak for all of us when I say we all love you very much
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