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Thread: Jim's Journey

  1. #231
    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    :) Prayers for y'all every day. I love you both. Jeanie :)

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  3. #232
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Jeanie)))))) ~

    Thank you so much for your prayers. We love you too and keep you in our prayers. I hope you are over your cold and feeling stronger.

    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. #233
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    Rose, always glad for any good news you can share. I do read more than respond but I'm always with you and sending prayers and positive thoughts your way. Your life inspires and touches so many people both in real life and online. I hope that you feel the prayers and positive thoughts that everyone sends your way. ((((HUGS))))
    Mary Grace

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  7. #234
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    Dear Rose, Thank you so much for keeping us all up to date on how it is going for you and for Jim. I appreciate your updates so much.

    I hope Jim can have a drainage soon - even if the fluid comes back, he will have literally, a moment's comfort without it pressing on his belly. It's so too bad that they haven't figured out a system for continuous drainage at home! Remember the PT who helped with Jon's lymphadema (sp?). Would he be able to help at all? I know it's different, but maybe similar enough to be helpful? I forgot to take photos when I visited Nick! :( I will find some to share with you though - I'll post some tomorrow. I can't access my profile here anymore - it's the strangest thing. I tried to edit my signature but I couldn't do it. Weird because I have no trouble signing in here. Nat is now almost 28 and Nick is 31! Sending love and healing hugs to you both, 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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  9. #235
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you so much for your love and prayers. We certainly do feel it, and it is comforting and reassuring. I hope that you, Kathleen and your family are well. You are all in our prayers too.

    Donna ~

    Maybe you could PM a Moderator for help with accessing your profile. Wow, the years seem to have flown by! Thank you for your love, hugs, and prayers. As always, you, Jim, Nick, Natalie, Daisy and your family are in our prayers.

    JIM'S DRAINAGE

    The positioning seems to be helping him a little. Jim hasn't decided whether he wants to have his gut drained again. It's a lot to go through for such a short window of relief, which isn't even substantial.

    Nancy says that the main reason not to have continuous drainage is because we need some fluid in our gut for gastric balance. There might also be potential for infection, as there is any time a foreign object is in the body (e.g., G tubes).

    The last time Jon's PT visited, he told us that Jon's gut wasn't lymphedema. It was just water/fluid. There wasn't anything that he could do to help us with that. He suggested Lasix, but that was a dangerous drug for Jonathan. Intensivists didn't even like to give it to him in ICU, when he was third spacing.

    In fact, our favorite Intensivist, also a pulmonologist, is the doctor, who told Jim that he had cancer. When he first met with Jim, he asked about Jon and me. Jim told him that Jon had lymphedema, and the doctor said,"Oh, I'm so sorry. You'll be chasing that forever."

    The same applies to Ascites. It's never going to go away. All we can do is try to manage it.

    FRUSTRATION

    Jim is becoming increasingly frustrated with his limitations.

    His denture needs to be relined, and he wants to go to the dentist by himself and drive our van.

    He doesn't remember that he was in horrible pain from getting in and out of the van the last time I drove him to a medical appointment. He doesn't remember how long the walk is from the parking lot to the second floor dentist's office. That is, if a space is available, because it's a small lot, and we have a huge van. He is sleep deprived, taking lots of meds. He hasn't driven since January.

    I explained to Jim that if he doesn't want John to drive us, then I will drive. I know he wants to do it and is capable, but I can't park in that lot, and he can't walk that far. So I need to drop him off at the front of the building, park across the street in a shopping center, and walk across the street to the office. It's a busy street too, with no crosswalk.

    In writing that, I realized that I need to convince Jim to let John take us to the dentist.

    I will call the dentist tomorrow to schedule an appointment. I will explain to the receptionist what's been going on with Jim and that Jon passed. I should schedule an appointment for me as well, except that I need a lot of work, and that takes a lot of time. Jim will be in and out in 15 minutes.

    It will be a very emotional meeting, because our dentist and staff are very attached to us and have been through all of our crises. They will be sad for us.

    Jim needs this done so that he can eat properly and have less gas. So, it is important and will help reduce his frustration a bit.

    Jim also declared that he wants "pub food." Specifically, a vegetable pot pie and deep fried chips. I found the pub's menu online, and they don't serve any of our favorites anymore. It's been nearly 25 years since we've been there. The prices are fairly steep, and the menu features beef, chicken, fish. A veggie burger. That's it. Jim was so disappointed.

    A few months ago, Jim had a hankering for Tofurky breakfast sausage, and he insisted that one of the Instacart stores carried it. None of them carried it, as I searched and searched. Finally, I checked the Tofurky website. They don't make it anymore.

    Nostalgia is working on Jim, I think.

    The Car

    Jim has decided that he doesn't want the RAV4 and thinks we can find a less expensive suitable car. Yes, we have been over this many, many, many times. He also says that we have to see the car, not buy a car on line. That, of course, is highly impractical. We can't drive around to car dealerships, in and out of the van, negotiating to buy a car. Jim could not handle that at all. For one thing, he has to be close to a toilet all day. And all of the dealerships are a fair drive from our home. Impractical!

    I don't know how long Jim has been stewing over this, but he just sprung it on me yesterday. So, for now, the car is off the table. I guess. I don't know. But it's best we leave it alone now.

    CHANGES

    I understand that Jim's loss of independence is upsetting. I also know that the past can creep up on us as we age, and we miss what we once had. Jim was a strong, muscular, fit, hard working man. Because he was all of those things, he is in better shape than others might be at this point in his journey. And he still wants to do what he used to be able to do.

    Well, so do I, but my body and my brain tell me: "That ain't happening."

    Like, I KNOW that I am going to need driving lessons from John to be able to drive any new car, with all of their gadgets. Our van is a 1998 Dodge Ram. The boys had a TV in the back. That's our technology.

    Jim is having difficulty understanding how to use the iPad. Frustration again. He's used to the Mac. But he also hasn't been on the Mac for 3 years or so.

    From pub food to cars and computers, it's as though Jim and I have been in a time warp. Now, we're old, and our comprehension is less, and we have to learn new things. We are literally old school.

    Jim feels left out. Like life is passing him by. He wants to drive. He wants pub food. He wants better channels on cable TV. He wants all of the things that he once had.

    "Ah, youth. 'Tis wasted on the young."

    BLOOD/UA TEST RESULTS

    Everything is stable. Any changes are minute. Even with Jim's bleeding, he maintains stable levels. And his platelets rose from 64 to 107! YAY!

    So far, UA tests are negative. Waiting for cultures.

    Thank you all for your love, prayers, support, healing thoughts and positive energy. We love you and hold you close to our hearts and in our prayers.

    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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  11. #236
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    Yes, yes! The platelets are up! I am grateful for that.

    Bless you both,
    ANN
    Last edited by stillstANNding; 11-20-2019 at 06:17 PM.
    There comes a time when silence is betrayal.- MLK

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  13. #237
    Distinguished Community Member agate's Avatar
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    Rose, this won't tell you what happened to Tofurky but might be of interest. I myself am not at all tempted to try these new "burgers" that are being marketed but you might want to know about them--if only to avoid them.

    https://www.consumerreports.org/nutr...ts-a-makeover/
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  15. #238
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    Dear Rose,
    I can understand Jim's frustration and I think that women are better (very generally speaking) at managing loss because we spend so much time throughout our lives serving the needs of others and being flexible. I think that wanting to hang on independence is hard wired in men and it makes being ill so much more difficult for them. I feel so badly for Jim's pain and yours. I have an idea but tell me if it's crazy. I found an organization that does home visits with therapy dogs. I wondered if a visit with a really gentle pooch would lift Jim's spirits and yours as well as give you something different to talk about and to look forward to. It might take Jim's mind off his driving and his 'old' english food that doesn't exist in CA anymore. I sent a general message today to Pet Therapy Intl today asking if they do home visits (they do but in I don't know about your area). I'll let you know what they say and then you can decide if this is something you would like to consider. Anyway, I promised some photos so here they are! Yesterday's walk in the fields near our place where Daisy can romp. Daisyandmewinterday.jpgIMG_7929.jpg Sending lots of love this morning[ATTACH=[ATTACH=CONFIG]5333 as always. 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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  17. #239
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    Hi Rose,

    So sorry for my delay in replying. I was busy traveling and working. Congrats to Jim on radiation “graduation”! I love that Jim got a “graduation certificate”. Again I love your waiting room stories. I thought Whole Foods did instacart and had the Tofurkey sausages? So glad the blood work is stable.

    Btw I thought this post https://www.ellenstumbo.com/episode32/ about cancer, care taking and disability may interest you and may be relevant to the emotions you and Jim are experiencing in this journey.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #240
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    ANN ~

    Thank you! Yes, his platelets are in a good place, so no fear of transfusions for now. Interesting that he had that bout with blood in his urine for about a day, but his blood work is stable and, in some cases, improved.

    Blessings upon you and Peter and your kitties too.

    agate ~

    Tofurky is still in business. They just don't make the breakfast sausages any longer.

    Jim loves the Beyond Burger. I can't stand the smell or look of them, when I cook them. Thankfully, he hasn't been interested in having one for awhile, with his iffy appetite.

    We do like the Beyond Meat "chicken" strips for fajitas, but I can't find them at any of my Instacart stores.

    Jim also likes Field Roast burgers. They're fine, but too much for me, because they're very large. I prefer Amy's frozen California or Sonoma burgers.

    There are plenty of recipes on line for homemade veggie burgers, but I just don't have the time/energy to make them. For quite awhile, I was making "No Tuna Salad," a Forks Over Knives recipe, with chickpeas/garbonzo beans. Delicious, but it has a variety of steps in preparation.

    To satisfy Jim's hankering for British food, I made a veggie Shepherd's Pie. It took about 2 hours, with breaks so I can sit down, but itís worth it, and we have leftovers. For this, we use Yves "Ground."

    funnylegs4 ~

    Welcome home from your travels! Thank you for sharing that amazing womanís story. Wow! I could relate to a great deal of what she has experienced. I canít imagine caring for that many children.

    Whole Foods left Instacart for Amazon. Tofurky still makes various sausages, just not the breakfast sausages. Those are/were Jimís favorite.

    Donna ~

    Thank you for those wonderful photos of you and Daisy. I showed them to Jim via the iPad, and we both agreed she is a lovely and lovable puppy. She's a snow dog, for sure! I didn't ask him about a therapy dog visit, but we have always flocked to therapy dogs in the hospital. Frequent ICU visitors to our boys. And during Jim's radiation therapy visits, we met a couple of therapy dogs walking through the corridor.

    If Jim could just go for a walk with me, he'd meet lots of sweet dogs, who just love to be loved and have patient owners allowing me to do so. The other day, as I bent my knees to scratch behind a medium terrier's ears, she plopped her head on my knees. She was blissful.

    John has 2 dogs, but only one would likely be able to visit, and Nancy has a new chihuahua/jack russell mix, who only weighs 3 lbs! Maybe she could bring her over to visit.

    Jim isn't over his British food desires, because he finally looked at the menu and discovered that they serve a veggie curry and samosas. Like many Brits, Jim loves Indian food. Two things: flu season is upon us; he has colon wall thickening, diverticulitus, and gastric issues. I'm pretty sure that his GI and Dr. K would advise him to avoid spicy food.

    There, again, is a loss for Jim. The food he loves and craves. And all of the memories associated with those meals.

    MEN & WOMEN

    I don't have the statistics at hand to back up this claim, but I do believe from personal experience that when a husband loses his wife, he is lost. When a wife loses her husband, she grieves and picks up the pieces to move forward. My dad died 18 months after my mother passed. But, my maternal grandmother survived her husband's death at the age of 64, as well as her own battles with cancer and the death of my mother, her daughter, to live to be 92.

    For years, Jim told me that he wanted to survive me, because he wanted to take care of me, if I became ill or disabled. He has said so many times that I've devoted my life to caring for our sons, my family and friends, that I deserve to be cared for in return.

    Every time Jim said this to me, even before he became ill, I told him the same thing: "No. You'd be lost without me. You don't know where everything is, how to pay bills, do the taxes, reorder meds on the phone. You don't even know how to use our landline phone! When I leave, I have to turn on the ringer for you, and leave you our cell phone number. No. You go first."

    Now, of course, with Jim's cancer journey, he recognizes that he couldn't do all of the things needed to care for me or be on his own, but he knows that I know how to do it without him.

    He wants his old life back. I absolutely understand how he feels. He just needs to express it, get it out of his system, vent, deal with his anxiety and depression, and talk with me until he reaches a place of calm and acceptance.

    As I texted with John today, I said that Jim has been so stoic through all of this, and he deserves to have his times of feeling however he feels. John replied that Jim needs a ďboys' night out," and I agreed, but it's just impractical for Jim to do that. He is so fatigued now and tied to the toilet.

    "I know that I'm dying, but while I'm still here, I want to be living."

    We have to talk about this. The consequences of picking up a virus like the flu or a cold could be devastating, and 'tis the season.

    DENTIST

    Jim agreed to letting John transport him. He is so fatigued, which Dr. S said would increase as the radiation does its job. He thinks he is up to getting in/out of the van and driving, but he isnít.

    John is happy to help, and this gives Jim some social time with John. I wonít go with Jim to the dentist, as it will be a short visit. I want Jim to get all of their attention, because he is beloved by our dentist and her staff.

    It was hard enough, when I called to make Jimís appointment, telling the receptionist about Jim's and Jonís journeys during the last 3 years and why I havenít been in for a cleaning. I become emotional and weepy. I know it will be worse for me to talk to them face to face. I just canít deal with it right now.

    Of course, I need extensive dental/gum work, but now is not the time to try to begin that. I just need to wade my way through the holidays with a semblance of sanity and coping. Also, Jim has several appointments in December.

    THANK YOU

    For your continuing love, prayers, and friendship. We love you all and pray for you and your loved ones. We give thanks 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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