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Thread: Jim's Update

  1. #921
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    Oh Rose, what a day. I was praying for Jim and for you and Jon this afternoon and then I opened my emails and found your message. I am responding here because I think it's easier for you. I am so sorry that Jim is so ill. I do hope the antibiotics make him better or that his cough alleviates on its own. In any case, you both made the only possible decision by cancelling the radiation today. What a gigantic pain dealing with doctors who do not read pre-existing conditions when they prescribe! I guess you knew that changing doctors mid-stream and dealing with a less than perfect clinical situation was going to be problematic. Thank goodness for Jim that you are so attentive to every detail!!!!! You must be exhausted. So must Jim. I'm glad he loves his new PJs - maybe they will help him sleep tonight. He needs rest and so do you! Thinking of you and sending love love love, Donna xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  3. #922
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    You certainly have a point, and we agree that there's a reason why this happened. Jim's cough has been worsening since he had the PET scan, and as long as he is coughing, he'll be unable to hold still long enough for the treatment. He's already feeling an improvement with just one dose of Zithromax, so we are hopeful that this will knock it out of him.

    I spoke to the lead tech coordinator today, and she's already given away Jim's appointments for next Monday and Wednesday. We agreed that we would wait until after Jim's blood work and x-ray on Friday to schedule. We also need Dr. K to weigh in on whether it is safe for Jim to have radiation, after a bout of pneumonia. Maybe we should wait two weeks, before he starts treatment.

    The 15 page document on why Jon can't take Synthroid seemed to impress several of the ICU physicians, evidently. Probably very few people go to such lengths to explain to their physician(s) why they object to a medication or treatment.

    For me, that was fairly easy, as I have extensive experience in writing and editing a wide range of documents. For my first spouse, I rewrote/edited/typed his Masters thesis, doctoral dissertation, and his first 4 textbooks. We were broke, so I made extra cash by editing and typing graduate theses and dissertations. As a result, I wrote my own Masters thesis in a weekend. It helps that I'm a very fast typist (or used to be anyway).

    I've also had to write reams of detailed documents about my boys for various social services programs, as well as fair hearing documents against county and state agencies. And letters to hundreds of officials, elected and otherwise. Most of that was pre-computer/internet.

    I'm grateful for the blessing of being able to write, as it has paid the bills, affected change, helped my children to receive a proper education, medical care, and social services. Writing is also a therapeutic venue for me. I think it's the primary factor in my being able to continue on through crises. I used to write lyrics and poetry constantly, but that has changed in recent years. Maybe I've lost my muse. Or I'm just too tired and busy to be creative.

    Thank you for your prayers for us. Jon's colostomy leaked again last night. Oh my! Jim came in to assist me, as tired and miserable as he was. Jon was coughing large gobs out of his trache, while on O2, and his colostomy had leaked all over the place. I needed a dozen hands for him! But Jim's 2 hands were super helpful, and he did wear a mask, which I continue to remind him to do. The box of masks is sitting out on top of the suction machine. Can't miss it.

    Jon only slept about 5 1/2 hours total yesterday/last night. So, he is wiped out today and back on 2 liters of O2. I remain on the fence and conflicted about antibiotics for him. I don't know what to do, and it's driving me around the bend.

    Jim's appetite is very good, for which we're all thankful. He's keeping up his fluids, urine output is good. Temp is still 99.4, a low grade temp for him. Still sweating and feeling cold, but that seems to be lessening today.

    We remain hopeful and are doing our best to have a positive outlook.

    We send our love, prayers and gratitude to all, who walk beside us.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #923
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    ((((((Donna)))))) ~

    I was composing my above response to funnylegs4, while you were posting, so I missed your post.

    As for the doctors not correlating existing conditions, which preclude the administration of some medications, we've had that all along. When Jim was in his first major RA flare in 2015, our PCP insisted that he needed a pneumonia and flu vaccine. Jim caved to pneumonia but not flu, and he was in bed for 10 days, very ill. Wrong time to give immunization, when you're in an autoimmune flare.

    Dr. P gave Jim Opdivo, without making sure that he had steroids with it for his RA.

    Our PCP sometimes forgets that Jon has a G Tube.

    I mean ... come on! He authorizes all of Jon's G Tube formula and supplies! And we love our PCP. We've been with him since he started his practice as a young'un in 2001.

    Yeah. It's like that, and it's maddening.

    I chalk some of this up to the fact that we live in a highly populated area, and our physicians have patient overload. Dr. F just walked out of there, and they're short one Rad Onc doctor now, filling in with doctors from all over Southern California! The majority of their caseload, I suspect, is baby boomers, like Jim.

    Chickens coming home to roost for the boomers now. All of the environmental pollution, lead, asbestos, smog, processed foods, too much sugar, or sugar alternatives, pesticides, smoking in every movie, TV show and commercial, nuclear testing, and of course, our Vietnam Vets have multiple varieties of cancer.

    I don't think that we have enough physicians to meet the demand. So, the ones we have are overworked and stretched to the limit. I've said to doctors many times, "You have thousands of patients. I have two."

    As for Jim's new PJ's, he's going to have to wait another day or two on those. Today, I had to wash two gigantic loads for Jon. I also ordered from another store on Instacart, so now our cupboards are fully stocked.

    One last thing to share about Jon.

    We have to use wrist restraints to prevent him from pulling out his catheter or his colostomy bag. This is so difficult for us to do, because we are restricting what little freedom he has left. The instant that his hands are free, they go where they can cause him harm. He's telling us that these are annoyances for him, and he wants them gone.

    Even John now says to Jon, "Hold on, buddy. I understand, but we need to be careful," as he reaches to hold Jon's hand during Jon's turns.

    It feels like we are reducing Jon's quality of life. When does protection become deprivation of personal freedom?

    One of several things, with which I am currently struggling to figure out.

    Thank you, as always, for your prayers and love. We send you our love and prayers too. Perhaps you could update on Nick's thread? I'm anxious to know how his recovery is going, and what's happening in your world.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #924
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    Oh, that is so so difficult about Jon's restraints. I don't know what to say other than to reflect on what I would do in your place. I would place the restraints and perhaps give him some time with very, very close supervision (if that's even safe or possible) when the danger would be minimized. I will update on Nick now!
    Donna xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  9. #925
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    You certainly have a point, and we agree that there's a reason why this happened. Jim's cough has been worsening since he had the PET scan, and as long as he is coughing, he'll be unable to hold still long enough for the treatment. He's already feeling an improvement with just one dose of Zithromax, so we are hopeful that this will knock it out of him.

    I spoke to the lead tech coordinator today, and she's already given away Jim's appointments for next Monday and Wednesday. We agreed that we would wait until after Jim's blood work and x-ray on Friday to schedule. We also need Dr. K to weigh in on whether it is safe for Jim to have radiation, after a bout of pneumonia. Maybe we should wait two weeks, before he starts treatment.

    The 15 page document on why Jon can't take Synthroid seemed to impress several of the ICU physicians, evidently. Probably very few people go to such lengths to explain to their physician(s) why they object to a medication or treatment.

    For me, that was fairly easy, as I have extensive experience in writing and editing a wide range of documents. For my first spouse, I rewrote/edited/typed his Masters thesis, doctoral dissertation, and his first 4 textbooks. We were broke, so I made extra cash by editing and typing graduate theses and dissertations. As a result, I wrote my own Masters thesis in a weekend. It helps that I'm a very fast typist (or used to be anyway).

    I've also had to write reams of detailed documents about my boys for various social services programs, as well as fair hearing documents against county and state agencies. And letters to hundreds of officials, elected and otherwise. Most of that was pre-computer/internet.

    I'm grateful for the blessing of being able to write, as it has paid the bills, affected change, helped my children to receive a proper education, medical care, and social services. Writing is also a therapeutic venue for me. I think it's the primary factor in my being able to continue on through crises. I used to write lyrics and poetry constantly, but that has changed in recent years. Maybe I've lost my muse. Or I'm just too tired and busy to be creative.

    Thank you for your prayers for us. Jon's colostomy leaked again last night. Oh my! Jim came in to assist me, as tired and miserable as he was. Jon was coughing large gobs out of his trache, while on O2, and his colostomy had leaked all over the place. I needed a dozen hands for him! But Jim's 2 hands were super helpful, and he did wear a mask, which I continue to remind him to do. The box of masks is sitting out on top of the suction machine. Can't miss it.

    Jon only slept about 5 1/2 hours total yesterday/last night. So, he is wiped out today and back on 2 liters of O2. I remain on the fence and conflicted about antibiotics for him. I don't know what to do, and it's driving me around the bend.

    Jim's appetite is very good, for which we're all thankful. He's keeping up his fluids, urine output is good. Temp is still 99.4, a low grade temp for him. Still sweating and feeling cold, but that seems to be lessening today.

    We remain hopeful and are doing our best to have a positive outlook.

    We send our love, prayers and gratitude to all, who walk beside us.

    Love & Light,



    Rose
    Hi Rose,
    Good idea waiting until you see Dr K. Was your ex husband a professor? Remind me what is a dissertation? I know people who have written dissertations but I still have zero clue what they are LOL. I always knew you were a fantastic writer hence why I always hoped you would write a book about your experiences even though I know you are far too busy at the moment. Your posts are always written so beautifully. I know how you feel about telling Drs stuff that should be 2nd nature to them. I basically have to tell them everything from scratch. Same with IEPs or work or college accommodations. Like, anybody want to write a Manuel on this stuff? Better to have the restraints for Jon.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #926
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    Default Just What I Didn't Need Today

    ((((((Hugs to All)))))) ~

    Donna ~

    The instant Jon's wrists are untied, his right hand goes straight to his man bits, because the catheter bothers him. The left hand either goes to his colostomy, because it itches, or his mouth. When we're lifting him up in the bed or turning him, we have to constantly ask him not to put his hands anywhere. We have to grab his hands away from his cath, colostomy and mouth every second he's untied.

    That's awful too, to keep saying "No Jon, please, put your hand on your heart." "Okay, Jon, please put your hand on your heart." "Jon, please ..."

    He's either restrained by the wrist bands or by us grabbing his hands and harping at him.

    One of our favorite ICU docs always had a sad expression, when he saw Jon being restrained. I would gesture at all of the equipment in the room, including a vent tube, and ask him, "Do you want him to pull out any of these things? Because he will. I guarantee you."

    It's just so unfair. Jon has lost so much of his independence and freedom. It hurts us to keep depriving him.

    And, I'm so perturbed by his wounds and the lack of help we're getting to treat them properly. When his nurse is here Friday to change his cath, I'm going to ask her to send the WOCN a photo of Jon's bottom and ask him what he suggests. Maybe we can get a photo tomorrow, when John turns him. Jim can be the photographer.

    Meanwhile, he's off of O2 for a few hours, holding SATS in upper 80s low 90s. We're just trying to give him a break from O2 and the coughing that comes with an open trache.

    He actually slept pretty well last night, utterly exhausted from little sleep over a period of days.

    funnylegs4 ~

    At the conclusion of the PhD program (after coursework), PhD candidates write a dissertation, on a topic of their choosing, specific to their area of study. The dissertation has to be an original idea and must demonstrate an application of knowledge gained through coursework. It must include footnotes, references and a bibliography. There are strict guidelines for format and style right down to the weight of the paper and the kind of binding used.

    After submission of the written dissertation, the PhD candidate is required to provide an oral defense of the dissertation before a panel of professors. It's pass or fail, very intense and grueling.

    We were a close knit group in grad school, so when any one of the PhD candidates went for "orals," we all gathered in the hallway outside of the conference room, pacing, drinking coffee, eating snacks.

    Yes, after my former spouse received his PhD, he was a professor. He may still be a professor. I don't know. I don't care.

    This takes me so far back, and I remember the day that he gave me the last page to type for his dissertation, which was 250 pages long. It was his "Dedication" page. He dedicated his dissertation to me, referring to me as his "anchor" and declaring that he wouldn't have been able to complete his PhD without my help. While it was true, his treatment of me was abominable. And he knew it.

    I have been writing a book about our life for the past 19 years right here on BrainTalk and CN. You and everyone, who visits here, are reading my book. Of course, I'd have to edit it heavily to publish it in book form, but you all have the raw, minute by minute, accounts of our life. You've been living it with us. We're like an on line soap opera.

    MEANWHILE JIM

    Is feeling much better today and coughing less, so it would appear that Z-pack is working. Thank you everyone for your prayers for this to be so, and Thank You, Lord, for hearing our prayers.

    John's boss's bosses (ugh!) are in town checking up on the Team, going out into the region and surprising people as they work. So, it's a good thing Jim didn't get radiation this week, because John has to be on his toes. He will be here after work to turn Jon, and we'll chat about whether he can transport Jim on Friday to Dr. K's visit/blood draw/x-ray. Jim insists that he'll be able to drive himself. I'm not confident that he can. Ok, I'll be honest, I don't want him to drive!

    Jon's nurse would offer, but she's working that day. In fact, she's scheduled to be here to change Jon's catheter.

    We just have no other transportation resources, and it's frustrating.

    The good news is that Jim's sweating has subsided, and he is feeling better. His appetite is very good, and he's feeling a little more spry. That is progress, and we give abundant thanks. Maybe he didn't need Levaquin after all, eh?

    EWWWWW ...

    I looked out our bedroom window onto the deck and in front of the door to Jim's workshop, I saw what appeared to be a mound of fur. I thought, with my poor vision, it must be a bunch of leaves, since we haven't had the back yard cleaned up for over a month, with the wind and rain we've been having.

    I went out to check Michael's pond. The waterfall hasn't worked for months, because the pump needs cleaning and Jim can't do that anymore. Nor can I. The pond fountain is just barely trickling.

    I wandered over onto the deck to check out the mound. It wasn't leaves.

    Back in the house, I told Jim, "We have a dead animal on the deck in front of your workshop."

    Onto the internet to search for companies that remove dead critters. Found one, and I was sold on them, because their website said, "Call us! We answer right away!" I'd already left a message at another place.

    Within a couple of hours, a scraggly man named Timothy in a weathered black van appeared. As I showed him where the critter was without going the distance with him, he bemoaned, "I'm tired."

    I responded, "Wait til you get to be my age."

    He groaned, "I'll be 52 in a month."

    "Like I said, it gets worse."

    Timothy isn't much older than Jon, and he's griping about how tired he is. Ha! If only he knew how lucky he was to be able to scrape up dead animals in people's back yards. Well, okay, no, that isn't a very nice job at all. But he is driving, working, not tied to oxygen or a bed.

    "That's been there for awhile," Timothy said.

    "But I only noticed it this morning." Every window in the back of our house looks out onto our backyard. But I haven't been opening Jon's shutters and drapes, because he's been sleeping so much. I forget to open the bedroom windows. Jim's cold, so the house is shut up, with the heater going all of the time, even when it's 75 degrees outside.

    I do not go into the backyard any more, because it is so depressing to be in its current state. I would be tempted to rake, sweep, pull weeds, etc. I just can't do that anymore. We want to bring in professional landscapers, who maintain our community, to trim our giant eucalyptus tree, which drops so much debris and install a hardscape that is drought tolerant. But when would we have time to do that?

    So, a dead possum ended up on the deck, and I didn't see it.

    "The only thing I have to clean off your deck is bleach, and I don't want to do that to your wood. Would you like me to hose it down for you?"

    "Yes, please."

    I had to sign his phone to authorize his work. I gave him a check and paper with our email address so he could email the invoice to me. I didn't want to be in his proximity at all. Look what he does for a living? Ewwww ... I scrubbed my hands so much after he left. Just

    And yet, he is providing a service, and I was very grateful for his prompt response. I'm sorry he hates his job, but I completely understand why he does.

    Because, you know, I just don't have enough things going on ...

    Thank you all so very much for your love, prayers, support and enduring friendship.

    We love you and pray for you and all of your loved ones every day ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  13. #927
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Donna ~

    The instant Jon's wrists are untied, his right hand goes straight to his man bits, because the catheter bothers him. The left hand either goes to his colostomy, because it itches, or his mouth. When we're lifting him up in the bed or turning him, we have to constantly ask him not to put his hands anywhere. We have to grab his hands away from his cath, colostomy and mouth every second he's untied.

    That's awful too, to keep saying "No Jon, please, put your hand on your heart." "Okay, Jon, please put your hand on your heart." "Jon, please ..."

    He's either restrained by the wrist bands or by us grabbing his hands and harping at him.

    One of our favorite ICU docs always had a sad expression, when he saw Jon being restrained. I would gesture at all of the equipment in the room, including a vent tube, and ask him, "Do you want him to pull out any of these things? Because he will. I guarantee you."

    It's just so unfair. Jon has lost so much of his independence and freedom. It hurts us to keep depriving him.

    And, I'm so perturbed by his wounds and the lack of help we're getting to treat them properly. When his nurse is here Friday to change his cath, I'm going to ask her to send the WOCN a photo of Jon's bottom and ask him what he suggests. Maybe we can get a photo tomorrow, when John turns him. Jim can be the photographer.

    Meanwhile, he's off of O2 for a few hours, holding SATS in upper 80s low 90s. We're just trying to give him a break from O2 and the coughing that comes with an open trache.

    He actually slept pretty well last night, utterly exhausted from little sleep over a period of days.

    funnylegs4 ~

    At the conclusion of the PhD program (after coursework), PhD candidates write a dissertation, on a topic of their choosing, specific to their area of study. The dissertation has to be an original idea and must demonstrate an application of knowledge gained through coursework. It must include footnotes, references and a bibliography. There are strict guidelines for format and style right down to the weight of the paper and the kind of binding used.

    After submission of the written dissertation, the PhD candidate is required to provide an oral defense of the dissertation before a panel of professors. It's pass or fail, very intense and grueling.

    We were a close knit group in grad school, so when any one of the PhD candidates went for "orals," we all gathered in the hallway outside of the conference room, pacing, drinking coffee, eating snacks.

    Yes, after my former spouse received his PhD, he was a professor. He may still be a professor. I don't know. I don't care.

    This takes me so far back, and I remember the day that he gave me the last page to type for his dissertation, which was 250 pages long. It was his "Dedication" page. He dedicated his dissertation to me, referring to me as his "anchor" and declaring that he wouldn't have been able to complete his PhD without my help. While it was true, his treatment of me was abominable. And he knew it.

    I have been writing a book about our life for the past 19 years right here on BrainTalk and CN. You and everyone, who visits here, are reading my book. Of course, I'd have to edit it heavily to publish it in book form, but you all have the raw, minute by minute, accounts of our life. You've been living it with us. We're like an on line soap opera.

    MEANWHILE JIM

    Is feeling much better today and coughing less, so it would appear that Z-pack is working. Thank you everyone for your prayers for this to be so, and Thank You, Lord, for hearing our prayers.

    John's boss's bosses (ugh!) are in town checking up on the Team, going out into the region and surprising people as they work. So, it's a good thing Jim didn't get radiation this week, because John has to be on his toes. He will be here after work to turn Jon, and we'll chat about whether he can transport Jim on Friday to Dr. K's visit/blood draw/x-ray. Jim insists that he'll be able to drive himself. I'm not confident that he can. Ok, I'll be honest, I don't want him to drive!

    Jon's nurse would offer, but she's working that day. In fact, she's scheduled to be here to change Jon's catheter.

    We just have no other transportation resources, and it's frustrating.

    The good news is that Jim's sweating has subsided, and he is feeling better. His appetite is very good, and he's feeling a little more spry. That is progress, and we give abundant thanks. Maybe he didn't need Levaquin after all, eh?

    EWWWWW ...

    I looked out our bedroom window onto the deck and in front of the door to Jim's workshop, I saw what appeared to be a mound of fur. I thought, with my poor vision, it must be a bunch of leaves, since we haven't had the back yard cleaned up for over a month, with the wind and rain we've been having.

    I went out to check Michael's pond. The waterfall hasn't worked for months, because the pump needs cleaning and Jim can't do that anymore. Nor can I. The pond fountain is just barely trickling.

    I wandered over onto the deck to check out the mound. It wasn't leaves.

    Back in the house, I told Jim, "We have a dead animal on the deck in front of your workshop."

    Onto the internet to search for companies that remove dead critters. Found one, and I was sold on them, because their website said, "Call us! We answer right away!" I'd already left a message at another place.

    Within a couple of hours, a scraggly man named Timothy in a weathered black van appeared. As I showed him where the critter was without going the distance with him, he bemoaned, "I'm tired."

    I responded, "Wait til you get to be my age."

    He groaned, "I'll be 52 in a month."

    "Like I said, it gets worse."

    Timothy isn't much older than Jon, and he's griping about how tired he is. Ha! If only he knew how lucky he was to be able to scrape up dead animals in people's back yards. Well, okay, no, that isn't a very nice job at all. But he is driving, working, not tied to oxygen or a bed.

    "That's been there for awhile," Timothy said.

    "But I only noticed it this morning." Every window in the back of our house looks out onto our backyard. But I haven't been opening Jon's shutters and drapes, because he's been sleeping so much. I forget to open the bedroom windows. Jim's cold, so the house is shut up, with the heater going all of the time, even when it's 75 degrees outside.

    I do not go into the backyard any more, because it is so depressing to be in its current state. I would be tempted to rake, sweep, pull weeds, etc. I just can't do that anymore. We want to bring in professional landscapers, who maintain our community, to trim our giant eucalyptus tree, which drops so much debris and install a hardscape that is drought tolerant. But when would we have time to do that?

    So, a dead possum ended up on the deck, and I didn't see it.

    "The only thing I have to clean off your deck is bleach, and I don't want to do that to your wood. Would you like me to hose it down for you?"

    "Yes, please."

    I had to sign his phone to authorize his work. I gave him a check and paper with our email address so he could email the invoice to me. I didn't want to be in his proximity at all. Look what he does for a living? Ewwww ... I scrubbed my hands so much after he left. Just

    And yet, he is providing a service, and I was very grateful for his prompt response. I'm sorry he hates his job, but I completely understand why he does.

    Because, you know, I just don't have enough things going on ...

    Thank you all so very much for your love, prayers, support and enduring friendship.

    We love you and pray for you and all of your loved ones every day ~

    Love & Light,



    Rose
    So glad Jim is feeling better. I don't know what to say about the restraints on Jon except I feel sorry that the things keeping him alive are so irritating to his body. :( Sorry about the dead animal. It is so gross but sad the animal passed and yes that guy who took the body was VERY much needed. Ok...I don't want a PhD then LOL. This may be because I'm younger but it was always my understanding that assignments similar to dissertations had to be written and/or typed by the person being graded?? I could be wrong. In my experience students can only get help typing if its a disability accommodation. Aww that's so sweet how you supported your fellow grads! True this is your book! Thanks for taking the time to answer my academic question there! Sorry if I brought up bad memories. I didn't mean to. I'm just surrounded by academia these days so I was curious.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  15. #928
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    My dear Rose,
    You are right, all these years you HAVE been writing a book here! And I am an avid reader - your words play like a movie in my mind. I see everything and I know your home as if it's my own. I am so glad that Jim is feeling better. Isn't it amazing how quickly antibiotics work? It's a miracle! I'm sorry though that poor Jon's wounds won't heal and that his hands must be tied. Rose, when I think of Jon, I am reminded of something that the German film director Werner Herzog said once, "that he lived a very diminished life, richly." Jon has your loving eyes to look at and your gentle voices to hear. He has your touch. At the end of the day, the most important thing in life is our loving relationships and Jon has those in spades.
    What a funny character your possum removal guy was! Isn't it interesting to people watch? I'm laughing because I'm imagining you asking him innocently "and what do you enjoy most about your job?" LOL wouldn't it have been funny to ask him that? It takes all kinds as my Mum used to say.
    It's interesting to hear you reminisce about grad school. I'm with so many 'kids' in grad school now (but online) because I co-instruct a course in family engagement in childhood disability research for McMaster University. Each semester we have 10 researcher trainees (mostly PhDs and post-docs) matched with 10 parent of kids with disabilities who want to partner in research. It's super fun and here's a bit about it if you are interested. http://kidsbrainhealth.ca/index.php/...e-of-research/ Our Natalie has just accepted to do her PhD at UW Madison. We are thrilled for her and she is excited to start in September. The academic life is interesting, but it's dull compared to reality at home with our kids, eh Rose? LOL Sending lots of love to all!!! Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  17. #929
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Improving!

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    The candidate must author the dissertation, but back in the covered wagon days anyway, students were not required to type their dissertations. In fact, most students hired a professional typist. In my case they hired a professional typist, as well as an editor. I never change content. I change structure, grammar, punctuation, paragraphing, a little bit of style to make it read better.

    For my former spouse, however, I edited heavily, because his writing style was horrible. For his textbooks, I did write several chapters in each book from just his notes. I rewrote the other chapters for continuity of style. His books were quite successful. Of course, I've never seen a dime in royalties. Ha!

    No need to apologize for taking me back to that time. That period of my life is quite vivid. Jon and Michael were born during the PhD saga. The old former sorority house we lived in at the time has been torn down and paved for a parking lot. (Joni Mitchell song reminder: paved paradise and put up a parking lot) Our PhD group was wonderful, and we had many fun times together. I hosted Thanksgiving, since most of us couldn't afford to go home for the holiday, saving money to go home for Christmas. It is a mixture of trauma, drama, and wonderful memories.

    Donna ~

    That's funny that my words play out like a movie to you. When I was a teen, I began to feel like my life was a movie. Of course, then it took a very dramatic turn, so it continues to feel like I'm in a movie. This isn't real. Am I in a parallel universe? I've often thought that instead of a book, I should write a screenplay.

    Thank you so much for your kind words about Jon's quality of life. I know that he understands that we're protecting him and that we feel awful about restraining him, because we say it every time we click the clasp on the restraints. And, oh yes, he is so loved by so many people. And he does have us, even in our less than blooming state of being, to care for him with our love and knowledge of his needs.

    He is at home, not in a hospital or a facility. Sadly, Donna, we don't have fantastic places like Nick's Rotary Home. As long as he is home, he is comfortable, has the freedom to watch whatever he wants to watch on TV/Blu Ray, can sleep whenever he wants to sleep, isn't harassed every 1/2 hour by someone coming into his room for some reason (as in the hospital, which you know well). From his window, he has a view of the sky, trees, our backyard, Michael's garden.

    We are living the best life we can all live now. Having his hands restrained is nothing compared to living in the unacceptable options available to him. Thank you, Donna, for this perspective. It really helps me.

    Wow! I didn't know you were instructing in a PhD program. That's fantastic! I promise I will visit the website, when I can spend some time actually reading and absorbing it all. You are an amazing teacher and advocate!

    Natalie is getting her PhD. Whew! So exciting. I'm glad that she took a break from academia for awhile before tackling the PhD, because it can be strenuous. I know she will excel.

    If I'd asked the possum removal guy, Timothy, not Tim, but Timothy, what his favorite part of his job was, he'd probably say, "Getting paid." Poor guy said after retrieving the critter, "I'll never get used to that smell."

    His equipment: a pair of garden like gloves, which have been used how many times for what purposes? And a bag that looked much like the ones we use for our kitchen and recycling trash. He threw it in the back of his van.

    The website shows a photo of a clean, short haired, shaved, young man in a crisp shirt with the company name on it. Timothy's hair was down to his neck and falling over his forehead, his shirt and pants were filthy, he was unshaven, and it wouldn't surprise me if he was drunk or high.

    Think about it. Who wants to do this horrible job? Felons? Predators? People, who can't get a job otherwise? People, who are desperate?

    We are elderly. My husband didn't come out to greet him. I did. We live in a nice neighborhood. I get paranoid.

    JIM & JON

    Jim is feeling better and will be seeing Dr. K tomorrow after a blood draw and chest x-ray. John will be transporting, because his boss's bosses (ugh) caught up with John yesterday. That freed John up today to go to the opening day of the Dodgers.

    Much to my surprise, after I texted John about turning Jon, he told me he was at the game. So, we deferred Jon's turn to tomorrow, and I am attempting to coordinate Jon's nurse's visit and John bringing Jim home, then turning Jon, so Jon's nurse can see Jon's wounds. I'll ask her to take a photo to send to the WOCN.

    Jim continues to feel better, and I pray that his blood work and chest x-ray tomorrow will show improvement.

    Jon continues to do well off of O2 with his trache plug, with SATS as high as 94! So we give thanks. And last night, all of us seemed to sleep better. I slept in Jon's room, while he slept, for an hour, then later another hour, then Jim relieved me at 4:30. I slept til 8 a.m.

    We thank you all for your continuing love, prayers, support and lasting friendship. We pray for you and your loved ones and thank God for the blessing you are in our lives.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  19. #930
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    Oh, I'm so glad to hear that Jim is feeling better and so is Jon. I pray that everyone continues to keep getting stronger and that you all get another good night's sleep tonight. So I understand that the blood draw and chest xray will dictate whether Jim can start radiation treatment? I hope there isn't too much of a wait if the results are all good. Antibiotics are weird. Whenever I get a UTI I just need one or two doses of the medication and I'm fine. I never take the whole course because I don't need to! I asked my GP about this and he said there is evidence to show that we don't need to take whole course every time for every infection. It depends.

    Wow, I am getting a clearer picture of Timothy and he sounds desperately sad, angry?, socially isolated, anti-social, dysfunctional. You were right to be nervous of someone like that, I would have been too! Poor fellow, he obviously hates his job. I wonder if a woman would be a better fit. Honestly, we don't mind cleaning up anything - and we smile and get on with it and see the purpose in making sure folks don't have the disease risk of a dead animal. I always said to Jim that if I had a job cleaning public toilets, I would become a campaigner for public health and my toilets would be very clean. Whatever we do, we see a purpose in it for the greater good. Some men have this world view about work and service, but not as many men as women, I think. Well, just musing here.

    I had to go back to the dentist again today because I thought the site of the extraction was infected. The dentist froze the site again and did a bunch of scraping out 'gunk' as he called it - said that some food had become lodged under the healing gum. So I hope that is the end of that! Then Jim, Daisy and I went for an early spring walk in the forest alongside a stream and waterfall. The snow is 'corn snow' as we call it - melting into ice crystals. We took our jackets off and just felt the sun on our backs. It was beautiful. Sadly we forgot the camera or I would send photos.

    I will send my love and prayers that Jim's blood work and xrays will all be good. Hope you and Jon have a good night tonight, too!
    xoxo donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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