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Thread: Jim's Update

  1. #291

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    Rose, your plan is sound. It's important to find a doctor you can feel comfortable with, and who can be honest and thorough and also think outside of the box when necessary. I hope the next doc is a good fit.

    The chemo and rads have likely taken some toll on Jim's cognition. Even steroids can cause some mild changes. Still, Jim is seriously ill, and it would not be surprising to find cancer anywhere at this point, as that is the nature of the ugly beast. If Jim and you were not feeling some level of fright and depression it would be odd. It's still possible to live well with the cloud of disease and the possibility of death sooner than later hanging over you. Look at you all...you're doing it!

    When you start with the new doc, you might also bring up the possibility of having home health begin to see Jim. They can offer monitoring by nurses, therapy to help maintain strength and function, help with personal care, and a social worker for counseling and helping you make sure you are getting all the services you need. This may well be the start of a time of transition, and it's important to look at long term options, if not for today, then later (hopefully a long while later). If Jim has a terrific response to the next therapies, then services can be ended. It's good to have a plan and services in place when things are just "sort of bad" rather than scrambling desperately if there is a crisis.

    Keep the good food coming to Jim. I am also a vegetarian, and wish I could come and cook for you both. I really enjoy making healthy veggie-packed meals.

    Enjoy the rest of the weekend!

    C

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  3. #292
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    Default Blood, Sleep and Memories

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

    callyflower ~

    Thank you so much for your insight and advice.

    Jim's cognitive issues are worse since he had the radiation treatments. We just pray that that is the cause, and not more mets in his brain. Recently, we learned that my uncle, who is only 7 years older than I am and is more like my brother as we grew up together, has been diagnosed with Alzheimer's Disease. Of course, this is more devastating news for me, as I adore my uncle/brother. Jim said that he'd rather have cancer than Alzheimer's, and I responded, "Who would want to choose between either of them?" And, sadly, if he has brain mets, he could be in a similar boat to my uncle/brother.

    We are truly trying our best to live well in the midst of this darkness around us. We are resilient and persevering. But we're getting old, and all of this is taking a larger toll on us than if we were a few years younger.

    In fact Jim will be 70 this month. I'm thinking of giving him an acoustic guitar. He has wanted to learn to play the guitar for years, but of course, we have no time for that! The other day, Jim was watching How to Play Guitar in a Day on PBS. And I thought, okay, let's do this now.

    About 20 years ago, Jim mastered the harmonica. Then he moved to Native American flutes, and then he started crafting flutes. He has some true masterpieces. But he doesn't have the breath to play either one. So, a guitar might just be the option.

    But I don't know whether he'll be able to follow the directions, with his cognitive issues. I don't want him to try, not be able to do it and become frustrated. But I also don't want him to miss the opportunity.

    I told Jim that I will call and make the appointment for the second opinion, and he's relieved. I have to coach him through most of his phone calls anyway, and I often end up taking the phone and continuing the conversation for him. That includes placing orders for his CBD and THC capsules, which by the way, are delivered to our door within 60-90 minutes after the order is placed. The new laws pertaining to recreational use are affecting medical use, and the implementation is quite hazy (pun intended) right now. A lot of things are up in the air.

    When Jim needs home health care, he will be with the agency, which has served Jon (and Michael) for 20 years, and Jon's nurse has already volunteered to be Jim's nurse. I think she is staving off retirement to do this, bless her heart. She has already been unofficially advising us through the last year (and prior to that with Jim's RA flare in 2015). I know she will help us, regardless of her status with the agency, because she is family to us. And Jon has another nurse on the team, who is wonderful too, and she could take over if his current nurse retires.

    OUR LATEST NEWS

    Jon has been restless and not sleeping well for 3 days. Last night, as I was coming in to give him his seizure meds, he was seizing. He finally fell asleep about 3:30 this morning, so I went to bed, and then I heard him and went back down to sit on his love seat. I got to bed finally about 5:45, and Jim got up at 6. I got up at 7:45.

    Jon finally fell asleep for real this afternoon, and I'm praying that he will be refreshed and restored after a good sleep. His vitals are good, outputs are good. Just sleep deprivation.

    Today, Jim coughed up a wad of blood, it looked old. He hasn't coughed up blood since last February, I don't think. An hour or so later, he coughed up less blood, but this time it was fresh and not in a glob.

    He hasn't had chemo in 39 days, so his lungs haven't gotten any attention, while his brain was being fried. I told him that if it continued, he should probably call Dr. P. He just looked at me, rolled his eyes and shook his head.

    I realized I can't accompany him to his appointment with Dr. P, because it is at 9:30, and I have to be here to take Jon off of his food, give meds, and put his food on. I think that's why she gives him morning appointments, because she knows I can't leave Jon. As Jim said tonight, "She doesn't like you." That is obvious to me. Very clear. Feeling mutual now that we've had a year of her nonsense.


    Jim decided to take a nap, while Jon naps, so they're both sawing off the logs now. If you wonder why I'm not napping, it's because I have to check Jon every 15 minutes to make sure that he's not seizing or awake, and to keep track of his formula.

    Typically, this would be the time when I'd be preparing a dinner for us, but since this late afternoon, early evening napping has begun, I've been left to making breakfasts and lunches only. I have some lovely sliced portobello mushrooms, asparagus, baby yukon potatoes, multi colored beets, and assorted baby carrots, that I'm just hankering to make for a dinner.

    Jon's nurse brought us a huge bunch of avocados off of her 40 year old tree. They take awhile to ripen, but they are the creamiest, tastiest, freshest avocados in the world. I grew up among avocado and orange groves, so I know that the only true avocado is one right off of the tree.

    I've often said that if I could hire someone to help me, I would hire a chef before a maid. I know that sounds crazy, but cooking wears me out, standing on our hard concrete slab floor. We had new cabinets and countertops installed in 2008. Jim ripped out the Pergo floor to replace it, and he's never done it, and has not been able to do it for years. Jon was in the hospital so many times during those years. So we have a cheap piece of linoleum over our slab. I have fatigue mats in the areas where I cook and at our sink, but it's not enough. Along with cooking, there's getting everything out, putting it away, dishes, pots and pans, cleaning the sink, counters, stovetop ... it's exhausting for me.

    When my boys were babies, I used to make bread from scratch, all kinds of bread, in an old gas stove. (Which blew up on me and left me with 3rd degree burns on my wrist and hand!) When I think of all I did in those days, when I was so incredibly young, and what I can do today, I feel like Methuselah. And I look a little like him too!

    Thank you again, callyflower, and to all of you, who are walking this journey beside us. We feel you near, we feel your love and prayers, and we are deeply grateful for the blessing you are in our lives.

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  5. #293
    Distinguished Community Member agate's Avatar
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    Rose, your experience with Dr. D.--the way she denied having said things that Jim knew she had said--makes me wonder if you could record future discussions with medical providers?

    I've heard of this being done, and in fact it's a huge issue in some of the medical literature. Some doctors don't mind, and others do. I'm assuming that the patient or the patient's companion asks permission first.

    Belated happy New Year to you and Jim and Jon. I'm so sorry that you're having to put up with a broken health-care system and that some of the practitioners really should have been obliged to choose other careers.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  7. #294

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    Dear Rose,

    Were you able to schedule Jim for his 2nd opinion? How is Jon doing?

    Thinking and praying for all of you.

    Marcie

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  9. #295
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    ((((((Hugs to All)))))) ~

    Marcie ~

    Thank you for your thoughts and prayers. Before I answer your questions, I am wondering how your husband is doing, and what treatment path he is following, and how you are coping through it all. I just want you to know that Iím here for you, and if you need me, feel free to send me a PM.

    Jim is feeling better with each day, thankfully. He hasnít been using any creams on the rads rash, and it seems to be lessening and not bothering him as much as it did. He is taking 5 mg of Prednisone/day, as he was told to do by Dr. D. His headaches are also getting less frequent and less intense.

    He is eating snacks and two meals every day and back on his Orgain. Fatigue isnít quite as troublesome, but he does nap here and there still. He canít sleep straight through 8 hours, because he has an enlarged prostate. So he gets up to pee about every 2-3 hours.

    For that reason, heís been spelling me at 2 - 2:30 in the mornings, so that I can go to bed. He has a cup of tea and a snack, watches a little TV, then turns on Jonís formula, and goes back to bed to sleep a few more hours. If Jon is still awake, I stay up longer, then Jim insists that I go to bed.

    SECOND OPINION

    When I called to make the appointment for the second opinion with Dr. PK, I was told that a protocol had to be followed:

    1. One of Jimís doctors has to request a second opinion for Jim. His PCP, or his pulmonologist.
    2. The request has to state Jimís diagnosis, his demographics, and documents related to his diagnosis.
    3. All of this has to be written and faxed to Dr. PK.

    I donít know what happens after that, but I guess Dr. PK will decide whether to take Jim as a patient for a second opinion. I wouldnít be surprised if Dr. PK speaks to Dr. P and Dr. D about Jim. They are all in the same practice and have the same central phone number/support staff.

    The first step is contacting Jimís PCP and his pulmo doc to ask for the referral. Both of them are wonderful docs, who have cared for our boys and us for 20 years. Pulmo doc told Jim last year at this time that if Jim needed anything, pulmo doc would be happy to help Jim.

    So none of this is going to be accomplished prior to Jimís appointment with Dr. P on Monday, 1/15. Jim decided that he would just go through with that appointment, tell her how he feels ~ that she seems disinterested in his care, doesnít have time to hear all of his symptoms, doesnít answer his questions, doesnít anticipate his questions, doesnít respond to him when heís having a crisis, etc. He wants to tell her that if she wants to continue with Gemcitabine, heís not on board. He was miserable on that drug, and she ignored him every time he told her that it gave him headaches.

    He says he wants to apologize to Dr. D! What? I know!

    Jim has told me that, recognizing that he has cognition issues, maybe he misconstrued what she said to him about the neoplasm on his skull being chemo-induced. Okay, I get that on one hand, because I live with Jim and know he forgets and mis-hears, and gets confused. But that day was prior to radiation treatments, and he was coherent. I remember vividly him telling me that the neoplasm (didnít use that term, of course) was ďNot in my brain, and caused by chemo.Ē

    Jim also recalled Dr. P, after learning the results of Jimís brain MRI, when she delivered the news. She had a sad look in her eyes, as she bowed her head, and said, ďItís in your brain.Ē Then she said, ďSo, Iím sending you to Dr. D.Ē And within minutes, she left him in the exam room, with no further explanation.

    I donít know why Jim feels compelled to apologize to anyone for being treated so poorly. Why didnít one of these doctors, or both, sit down with Jim (acknowledging as DOCTORS that he might have cognitive issues) and explain it to him explicitly and simply? Why didnít one of them say, ďLetís call your wife, and she can listen in on the discussionĒ?

    They know our family situation. They know that I canít be with Jim for all of his appointments. So, they exclude me. Iím his 24 hour caregiver, his wife of 25 years, his only relative. I have to rely on Jimís recollection and accounting of his appointments, tests, etc., which is sometimes difficult for him to convey. But when he reiterates the same story over days and weeks, I know he must be remembering correctly.

    Jim and I need to discuss this further. But if he feels he needs to apologize, then thatís what he should do. Itís his ship, and heís the Captain.

    Meanwhile, we keep keepiní on.

    John visited yesterday evening to turn Jon, and Jim mentioned to John that he wants to get his old bicycle off of the wall of the garage, so that Jim can start riding his bike around the neighborhood. Jim thinks that he could manage riding a bike better than walking. I canít even remember how long it has been since Jim rode his bike (or I rode mine). But walking, well, we do that daily.

    So, I expressed my concerns about Jimís safety riding the bike, and that heíd need a helmet, and knee pads, and elbow pads, and that our community is very hilly, and even though some inclines are slight, they present an effort when walking let alone pedaling. (I walk nearly every day, and in my younger years, I rode my bike all over our neighborhood, while my boys were in school.) There are rocks/pebbles, tree limbs, wet leaves, etc. on our streets and sidewalks, not to mention small pot holes. Hit one of those on the bike, and down you go.

    John understood my worries, but then he also said, ďCome on Rose. You gotta let Jim live!Ē

    And that made me pause. I wanted to reply, ďWell, letís just get him a motorcycle!" Or, ďHeís always wanted a paraglider!Ē

    Like everything else, I will wait for that idea to wane, as it often does for Jim. He desperately wanted a walking stick, and he swore he would walk outside a little everyday. But he hasnít, and even though he loves to walk, itís too much for him. He doesnít get that riding a bike is strenuous, far more than walking.

    If Jim continues to pursue riding his bike, I may just have to flat out say to him, ďHoney, this scares me to pieces and stresses me to the max. I wish you would reconsider for my sake, if not your own.Ē

    Itís an adventure. It sure is Ö full of lessons.

    Thank you all for your love, prayers, and support. Our prayers are with you too, and we are so very grateful for the blessing you are in our lives.

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  11. #296
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Marcie ~

    Thank you for your thoughts and prayers. Before I answer your questions, I am wondering how your husband is doing, and what treatment path he is following, and how you are coping through it all. I just want you to know that I’m here for you, and if you need me, feel free to send me a PM.

    Jim is feeling better with each day, thankfully. He hasn’t been using any creams on the rads rash, and it seems to be lessening and not bothering him as much as it did. He is taking 5 mg of Prednisone/day, as he was told to do by Dr. D. His headaches are also getting less frequent and less intense.

    He is eating snacks and two meals every day and back on his Orgain. Fatigue isn’t quite as troublesome, but he does nap here and there still. He can’t sleep straight through 8 hours, because he has an enlarged prostate. So he gets up to pee about every 2-3 hours.

    For that reason, he’s been spelling me at 2 - 2:30 in the mornings, so that I can go to bed. He has a cup of tea and a snack, watches a little TV, then turns on Jon’s formula, and goes back to bed to sleep a few more hours. If Jon is still awake, I stay up longer, then Jim insists that I go to bed.

    SECOND OPINION

    When I called to make the appointment for the second opinion with Dr. PK, I was told that a protocol had to be followed:

    1. One of Jim’s doctors has to request a second opinion for Jim. His PCP, or his pulmonologist.
    2. The request has to state Jim’s diagnosis, his demographics, and documents related to his diagnosis.
    3. All of this has to be written and faxed to Dr. PK.

    I don’t know what happens after that, but I guess Dr. PK will decide whether to take Jim as a patient for a second opinion. I wouldn’t be surprised if Dr. PK speaks to Dr. P and Dr. D about Jim. They are all in the same practice and have the same central phone number/support staff.

    The first step is contacting Jim’s PCP and his pulmo doc to ask for the referral. Both of them are wonderful docs, who have cared for our boys and us for 20 years. Pulmo doc told Jim last year at this time that if Jim needed anything, pulmo doc would be happy to help Jim.

    So none of this is going to be accomplished prior to Jim’s appointment with Dr. P on Monday, 1/15. Jim decided that he would just go through with that appointment, tell her how he feels ~ that she seems disinterested in his care, doesn’t have time to hear all of his symptoms, doesn’t answer his questions, doesn’t anticipate his questions, doesn’t respond to him when he’s having a crisis, etc. He wants to tell her that if she wants to continue with Gemcitabine, he’s not on board. He was miserable on that drug, and she ignored him every time he told her that it gave him headaches.

    He says he wants to apologize to Dr. D! What? I know!

    Jim has told me that, recognizing that he has cognition issues, maybe he misconstrued what she said to him about the neoplasm on his skull being chemo-induced. Okay, I get that on one hand, because I live with Jim and know he forgets and mis-hears, and gets confused. But that day was prior to radiation treatments, and he was coherent. I remember vividly him telling me that the neoplasm (didn’t use that term, of course) was “Not in my brain, and caused by chemo.”

    Jim also recalled Dr. P, after learning the results of Jim’s brain MRI, when she delivered the news. She had a sad look in her eyes, as she bowed her head, and said, “It’s in your brain.” Then she said, “So, I’m sending you to Dr. D.” And within minutes, she left him in the exam room, with no further explanation.

    I don’t know why Jim feels compelled to apologize to anyone for being treated so poorly. Why didn’t one of these doctors, or both, sit down with Jim (acknowledging as DOCTORS that he might have cognitive issues) and explain it to him explicitly and simply? Why didn’t one of them say, “Let’s call your wife, and she can listen in on the discussion”?

    They know our family situation. They know that I can’t be with Jim for all of his appointments. So, they exclude me. I’m his 24 hour caregiver, his wife of 25 years, his only relative. I have to rely on Jim’s recollection and accounting of his appointments, tests, etc., which is sometimes difficult for him to convey. But when he reiterates the same story over days and weeks, I know he must be remembering correctly.

    Jim and I need to discuss this further. But if he feels he needs to apologize, then that’s what he should do. It’s his ship, and he’s the Captain.

    Meanwhile, we keep keepin’ on.

    John visited yesterday evening to turn Jon, and Jim mentioned to John that he wants to get his old bicycle off of the wall of the garage, so that Jim can start riding his bike around the neighborhood. Jim thinks that he could manage riding a bike better than walking. I can’t even remember how long it has been since Jim rode his bike (or I rode mine). But walking, well, we do that daily.

    So, I expressed my concerns about Jim’s safety riding the bike, and that he’d need a helmet, and knee pads, and elbow pads, and that our community is very hilly, and even though some inclines are slight, they present an effort when walking let alone pedaling. (I walk nearly every day, and in my younger years, I rode my bike all over our neighborhood, while my boys were in school.) There are rocks/pebbles, tree limbs, wet leaves, etc. on our streets and sidewalks, not to mention small pot holes. Hit one of those on the bike, and down you go.

    John understood my worries, but then he also said, “Come on Rose. You gotta let Jim live!”

    And that made me pause. I wanted to reply, “Well, let’s just get him a motorcycle!" Or, “He’s always wanted a paraglider!”

    Like everything else, I will wait for that idea to wane, as it often does for Jim. He desperately wanted a walking stick, and he swore he would walk outside a little everyday. But he hasn’t, and even though he loves to walk, it’s too much for him. He doesn’t get that riding a bike is strenuous, far more than walking.

    If Jim continues to pursue riding his bike, I may just have to flat out say to him, “Honey, this scares me to pieces and stresses me to the max. I wish you would reconsider for my sake, if not your own.”

    It’s an adventure. It sure is … full of lessons.

    Thank you all for your love, prayers, and support. Our prayers are with you too, and we are so very grateful for the blessing you are in our lives.

    Love & Light,



    Rose
    In terms of apologizing I think Jim needs to follow his instincts. In regards to calling you, when dealing with my docs they would never make that suggestion on their own because of privacy laws. Jim has to suggest it. If he has and they refuse that is a huge problem. RE: The bike, I have a 3 wheeled recumbent outdoor bike. The fact that it has 3 wheels and a recumbent body it makes it less strenuous. It is more stable and less likely to fall. I have CP and can ride my bike for much longer and much further than I can walk. So if its that type of bike it might be okay as long as all other safety precautions are taken as with a regular bike. Only downside is the bike is very heavy and large in that model so you need a way to get it in and out of wherever you store it easily. I hope Jim doesn't prefer the bike simply because it involves sitting since there is more to it than that. Prayers as always!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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  13. #297
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Jim's bike is an old 6-8 speed bike with hand brakes. And that reminds me ~ he has to slouch over the front of the bike (like bicycle racers do) on a hard seat, and he has neck, shoulder and lower back problems. That's something, which I need to mention to him. He just doesn't think of these things, when he gets these ideas. And he forgets that he is old and that he's battling cancer sometimes, because he wants to do what he wants to do.

    I wouldn't dream of getting on my old bike now! When I was in my 30s, I used to ride my bike down our very steep hill to the bottom of our community, and then I rode it back up! That took months of practice and working up to it. But I also carried and lifted Michael, and wheelchairs, and ... Because I was young, healthy and fit. Can't do any of that now. And frankly, neither can Jim.

    Last year, when I wanted to call a plumber to install a new toilet downstairs (still a dream of mine ...), Jim said that he and John could install a new toilet. I said, "What world are you in? You have RA and cancer. There is NO WAY you can install a toilet. That's why God made plumbers, honey."

    I think I'll pull a Jim on Jim. With all of the sincerity I can muster, with a straight face, I'll tell Jim, "Honey, I'm going to start training to run a marathon. I'll start with the LA Marathon, because that's close." HA!

    Regarding the doctors protecting Jim's privacy by not suggesting that I be called and included: I'm Jim's wife. Does privacy (HIPPA) apply to spouses? Nonetheless, these doctors know our family situation, and they know that I'm Jim's full time, 24 hour a day every day caregiver, and that Jim and I are extraordinarily close. Just out of compassion for Jim and me, they should offer to include me. They should think about how that will make Jim more comfortable and that what they say will be heard by me, and then there will be no question about whether Jim mis-heard anything.

    Agate's idea of taping the appointments is excellent, but I'm thinking that wouldn't go over too well with Dr. P or Dr. D.

    It just occurred to me that with 2018 technology, the doctor should be able to FaceTime of Skype with me during the appointment or somehow communicate with me via the web. But that would take too much time, and Dr. P and Dr. D only have a few spare minutes for each patient. Jim's maximum time with the doctors is about 5 minutes. Maybe 10, if they come in and out a few times.

    But, hey, they're busy. Taking care of patients with a terminal illness. They don't have time to give each patient their compassion and kindness. It's akin to an assembly line there. And in the infusion center. It's like taking a number at the DMV. Next!

    For me, not being with Jim when he has his doctor appointments, his tests, his infusions, and when he was hospitalized last year with pneumonia, is extremely difficult, stressful, and depriving both of us of the support we each need to give and receive. It's hurtful.

    But this is our reality. And so we deal with it. I am praying that Dr. PK will accept Jim as a patient and show more understanding toward our unique circumstances and embrace me as Jim's devoted wife and soul mate. Someone has to acknowledge how painful this is for us, knowing that we will be parted by death. And no one could possibly know how Jim's passing will affect Jonathan. He has grieved for Michael for nearly 15 years now every day. Losing Jim will be utterly devastating to Jonathan.

    We just need some compassion and kindness now. In a very very big way.

    Thank you all again and again for walking with us on this journey. We love you.

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  15. #298
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    hello rose !

    a patient is prolly the most impatient person! we want to feel normal again. recovering from surgery, i am feeling fidgety. i want to do stuff. i can't. i will have to resolve that myself.

    something i found on recording phone calls or recording conversations:

    Federal law permits recording telephone calls and in-person conversations with the consent of at least one of the parties. See 18 U.S.C. 2511(2)(d). This is called a "one-party consent" law. Under a one-party consent law, you can record a phone call or conversation so long as you are a party to the conversation.
    Recording Phone Calls, Conversations, Meetings and Hearings
    www.dmlp.org/book/export/html/1246
    as far as jim's doctors sharing information with you about jim's, as long as jim signs the form that says any of his doctors can talk to you about anything regarding his condition, you have that right. all doctors know a patient who has an advocate is better served, especially if they are undergoing treatment that might make them forgetful.

    i hope some of these issues are resolved soon. you don't need the excess stress.

    prayers to your family and all those that help,
    jeannie
    Last edited by tic chick; 01-11-2018 at 09:50 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
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  17. #299
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    ((((((Hugs to All)))))) ~

    tic chick ~

    Healing prayers on their way to you as you recover from your surgery. I do know the impatient patient phenomenon. I've been that person many times.

    Thank you for your thoughts, information and prayers.

    Jim gets out of breath climbing the stairs, or helping me pull Jon up in bed. Imagine how he will be if he gets on his bike and attempts to travel any further than the end of our driveway. As I mentioned, our terrain can be tricky in our community, and we do have many inclines on our streets and greenbelt sidewalks.

    A few years ago, I slipped on a greenbelt sidewalk, which was wet and silty from the over-spray of the sprinklers on the grassy area. I injured my knee, which thankfully healed quickly. And I didn't break a hip or any other bone. I wear great walking shoes, and I am careful, but this is the kind of obstacle we can face, especially as seniors, and especially since we have health issues. I just don't want Jim on his bike on our streets/sidewalks by himself, because if something happens to him, that could end up being serious, perhaps even fatal.

    When John said I should let Jim live, I should have (and may still) replied, "That's precisely what I am doing. I am trying to protect him from harm. He's not able to ride a bike. And it could be dangerous for him."

    John plays golf every week, and it would be so fun for Jim to play golf with him. And even though John uses a cart and doesn't walk the course, Jim would likely injure himself swinging a golf club (his back, his neck, his shoulders). So for all of the fun that might be, it could cause Jim great pain and set back his goal of living with cancer as long as possible.

    I'm a pragmatic realist. I dream, yes, but I live in the real world, because I have no other choice. This is reality, and Jim has to accept it. I'd love to ride my bike again, but I know that is not practical and could likely end up causing me pain and possible injury at my age and ability level now. That's reality. We can only do what we can do.

    I think that Jim signed a form of consent to have his medical information shared with me. I think, but I'm not sure, so that's something we need to ensure occurs when Jim goes in on Monday to see Dr. P.

    Based on my nearly 50 years of advocating for my sons, I can assure you that not ALL doctors appreciate a patient advocate, whether that advocate is the daughter, granddaughter, niece, mother, wife, or a professional. Through my 17 years here at CN, I have recounted numerous times, when doctors pushed back on me as I advocated for my boys. How dare I question them? They are physicians!

    Dr. P has no use for me with Jim, because I "know too much" (my words, not hers), and I question everything. That is my job as Jim's wife and caregiver, but she will have none of it with me. In a phone conversation with her once, while Jim was with her, I asked her Jim's prognosis. She said matter of factly and coldly, "Not good."

    I probed for more clarification, stunned and weeping, "What do you mean, 'not good'?"

    She repeated, "I mean not good. Not good."

    "Do you have a prognosis of time?" I was shaking.

    "Hmm ... maybe 6 months or less." Like it was nothing. No big deal. She didn't offer an "I'm sorry" or "I wish I didn't have to tell you this" or "I can imagine how difficult this is for you and Jim and your son" or anything. She tersely said, "Anything else?" to end the conversation.

    I went through something similar, but worse than this, when Michael was dying. It scarred me forever. So, I am exceptionally sensitive to the utter lack of compassion shown to me by the medical professionals attending to Jim now. None of them seem to care how hard this is for us, for our family, and what the future without Jim portends for me and Jonathan. We have zero support and no kindness or compassion. Sorry, if I'm a one note tune right now, but that is the fact of our current state, and it is overwhelmingly depressing.

    I'm just praying that we can get a second opinion with Dr. PK, and that he will be responsive, where Dr. P and Dr. D were not. Because we can't go on this way, nor should we have to go on this way.

    To all, who are following our journey, we thank you. Bless you.

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  19. #300

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    Rose, your thoughts on the bike are spot on. It is a horribly dangerous idea. This year I began riding my bike after at least 10 years of no riding. To start, the bike had to be serviced. I got a new helmet, a bell and a rack for my daughter's car. We only ride on a dedicated bike trail at a park. No worries about car traffic. I only ride with my daughter, never alone.

    Riding a bike takes a lot of skills. I would never had even tried it if my myasthenia gravis symptoms hadn't been under control thanks to my miracle drug. Still, it was a challenge at first and I'm SO aware of how devastating even a minor fall or crash could be. You may just have to pull rank on this one. I'm sorry.

    I'm hoping you can get a new doc. I can tell you are just seething with disappointment with your current one.

    Take care,

    C

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