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Update - eventful year, difficult child still doing poorly
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<blockquote data-quote="katya02" data-source="post: 565330" data-attributes="member: 2884"><p>difficult child is now managing to tick off even his father. His dad has been making considerable effort with difficult child over the past several months, helping him find a new apartment, moving him in with the help of one of diagnosis's partners, shopping with him for groceries, taking him to the movies and out for dinner weekly, and calling/stopping in to visit almost every day on his way to or from work. </p><p></p><p>difficult child has gained a great deal of weight since his daughter died in 2010. He's now morbidly obese, had multiple pulmonary emboli to both lungs in May 2011, and has a great deal of back and muscle pain. He's had MRIs and CTs, but nothing shows that is structural - i.e. fixable - to explain his pain. He's on very high doses of pain medications now, more than the pain clinic doctor is comfortable with. The bargain was that Ggf would get active as soon as he had some relief with the medications, and then the doses would come down. </p><p></p><p>Currently difficult child stays up all night on his computer and sleeps all day. He never makes the phone calls he needs to make because he doesn't wake up until 6 pm (!), and then complains that utilities and doctors' offices are impossible to deal with. He tries to push the calls onto diagnosis but hasn't been successful with that. He also stopped his PT after the blood clots, but has been cleared to go back for many months. He doesn't go. Now he needs to go and see about insurance because of being switched from MA to Medicare, and he needs a new order from the PCP to restart the therapy - easy to get, just a phone call. But he hasn't done anything. diagnosis just bought him a $2800 bed like the ones in the sleep study clinic because difficult child said he was very comfortable during the study. Currently difficult child sleeps on a recliner because he says it's too painful to lie down flat in bed. So the expensive bed arrives tomorrow, but diagnosis is becoming frustrated as he sees that difficult child won't lift a finger to pick up the phone, much less go to PT. diagnosis assumes everyone thinks like he does; he goes on and on about how if HE were in this situation, he'd be doing this or that ... can't grasp that difficult child isn't HIM and he has to look at what difficult child is doing/willing to do. Until difficult child decides it's important to him to lose weight, get to PT, and make a few necessary calls, nothing will happen. If difficult child alienates diagnosis, though, he'll really be on his own. It may take that, although it'll mean a crisis with his coumadin medications, alcohol/drug overuse, you name it. And when difficult child gets really upset he cuts ... on coumadin that won't go well, he'll end up in the local ER. </p><p></p><p>diagnosis is astonished, perplexed, and unable to comprehend this behavior. If he'd paid attention at all for the past, oh, 24 years, he'd be clued in. I admit, it doesn't improve my attitude toward diagnosis when he's so incredulous - makes me want to snap at him. I advocated for my little boy all these years and struggled through his care, had him turn on me for'drugging' him, watched him refuse all help, watched him lose weight and become active when HE wanted to ... none of this is news. It's hard to deal with but not news. So my resentment ratchets up when diagnosis is blindsided by all of this and venting to me.</p></blockquote><p></p>
[QUOTE="katya02, post: 565330, member: 2884"] difficult child is now managing to tick off even his father. His dad has been making considerable effort with difficult child over the past several months, helping him find a new apartment, moving him in with the help of one of diagnosis's partners, shopping with him for groceries, taking him to the movies and out for dinner weekly, and calling/stopping in to visit almost every day on his way to or from work. difficult child has gained a great deal of weight since his daughter died in 2010. He's now morbidly obese, had multiple pulmonary emboli to both lungs in May 2011, and has a great deal of back and muscle pain. He's had MRIs and CTs, but nothing shows that is structural - i.e. fixable - to explain his pain. He's on very high doses of pain medications now, more than the pain clinic doctor is comfortable with. The bargain was that Ggf would get active as soon as he had some relief with the medications, and then the doses would come down. Currently difficult child stays up all night on his computer and sleeps all day. He never makes the phone calls he needs to make because he doesn't wake up until 6 pm (!), and then complains that utilities and doctors' offices are impossible to deal with. He tries to push the calls onto diagnosis but hasn't been successful with that. He also stopped his PT after the blood clots, but has been cleared to go back for many months. He doesn't go. Now he needs to go and see about insurance because of being switched from MA to Medicare, and he needs a new order from the PCP to restart the therapy - easy to get, just a phone call. But he hasn't done anything. diagnosis just bought him a $2800 bed like the ones in the sleep study clinic because difficult child said he was very comfortable during the study. Currently difficult child sleeps on a recliner because he says it's too painful to lie down flat in bed. So the expensive bed arrives tomorrow, but diagnosis is becoming frustrated as he sees that difficult child won't lift a finger to pick up the phone, much less go to PT. diagnosis assumes everyone thinks like he does; he goes on and on about how if HE were in this situation, he'd be doing this or that ... can't grasp that difficult child isn't HIM and he has to look at what difficult child is doing/willing to do. Until difficult child decides it's important to him to lose weight, get to PT, and make a few necessary calls, nothing will happen. If difficult child alienates diagnosis, though, he'll really be on his own. It may take that, although it'll mean a crisis with his coumadin medications, alcohol/drug overuse, you name it. And when difficult child gets really upset he cuts ... on coumadin that won't go well, he'll end up in the local ER. diagnosis is astonished, perplexed, and unable to comprehend this behavior. If he'd paid attention at all for the past, oh, 24 years, he'd be clued in. I admit, it doesn't improve my attitude toward diagnosis when he's so incredulous - makes me want to snap at him. I advocated for my little boy all these years and struggled through his care, had him turn on me for'drugging' him, watched him refuse all help, watched him lose weight and become active when HE wanted to ... none of this is news. It's hard to deal with but not news. So my resentment ratchets up when diagnosis is blindsided by all of this and venting to me. [/QUOTE]
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Update - eventful year, difficult child still doing poorly
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