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Thread: Jim's Update

  1. #871
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    Smile All About Love

    ((((((Donna)))))) ~

    Thank you for sharing Daisy's photo. She is gorgeous! She blends right in with the snow! I'll bet you miss her, and she misses you and Jim.

    Everything I know about love I learned from Jonathan and Michael. There is nothing idyllic or magical about us or worth envying. We just know that the only thing that powers us through the difficult times is love. Love isn't complicated. It's the reason why we're all here ~ to give and receive love.

    I've studied various religions and metaphysics and have taken many spiritual journeys, and one message is clear: Love is the core of everything. To quote The Doobie Brothers : "Without love, where would you be now?"

    If you can love one person, you can love another and another and another ... The more love you demonstrate to others, the more love you receive. Love is contagious!

    You know this, of course, because that is exactly what you and Jim are doing on Cat Island: spreading love. Love is an action, not just a feeling. It's a verb.

    Cat Island is in the Bahamas, correct? About 1,500+ residents? Resorts? Hotels? Why isn't there a physician or medical care available to the residents? What happens to tourists, who have a medical need, when they are on the island?

    Did Nick have fun at the barbershop? He and his uncle always have fun. Such a beautiful family full of LOVE you have!

    Wow! Natalie is awaiting news on a PhD program at Harvard or Yale? Awesome! Prayers on the way!

    Please share our love with all of your friends on the island. Let them know that strangers in California are praying for them and sending them love and healing energy.

    OUR UPDATE

    No turn for Jon today, as he fell asleep at 1 p.m. He's napping in the afternoons quite a lot now. Could be his meds, but I can't lower the dose again, after his last seizure. It sucks that it's either sleeping or seizing, but of the two, you know the choice is easy.

    Jon's nurse will be here tomorrow morning to change Jon's trache. John will visit in the early afternoon, and we're hoping that Jon will stay awake for the turn.

    Jim is feeling better and trying to eat more. Jon's sleeping doesn't help in that we can't cook and make noise and wake him. He clearly needs this sleep. We just wish he'd do it at night!

    Busy morning for me. I took my walk. I ordered from Whole Foods on Instacart, unpacked, wiped everything with alcohol and put away the groceries. I'm so very thankful for this delivery service. It has saved me so much pain, time away from Jim and Jon, and utter exhaustion.

    I called Dr. F's office to confirm Jim's 3/4 appointment for radiation consult. Sigh.

    I called Mothers about our multi-vitamins, because John couldn't find them at our local store. It's a 25 minute drive to/from, plus shopping, for me to go there. I just can't be away for 2 hours. I called another market, where John was going to go tomorrow, but it doesn't have our vitamins in stock.

    However, the "vitamin gal" agreed to find them at another store and have them transferred to her store. I ordered 10 bottles with 120 tablets (2/day), which will give us 10 months of vitamins each. These have been our vitamins for over 16 years. They seem to be working for us, and we don't want to change now. YAY!

    Jim just informed me that he is not going to allow me to pull Jon up in the bed by myself. "For my exercise, I'm going to help you pull him up with the bottom sheet. Don't argue with me. You're going to hurt your back, and then where will we be? I won't do anything else but assist you in pulling him up. You can unlock/lock the brakes, pull out the bed from the wall, get everything set up. When we do it together, it's much easier for both of us."

    Of course, I tried to argue with him. "I'm not having any of it," he said. "We'll do this together."

    Okay. We'll try it tonight, whenever Jon wakes up and see how it goes for Jim.

    Even with low WBC, unbelievable fatigue, and everything else he's going through, Jim is my knight in shining armor.

    That is love.

    We send all our love to you, Jim, Nick, Natalie, Daisy, and your family and to all our friends here, with gratitude for your love, prayers, and constant support.

    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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  3. #872
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    My dear Rose, I'm so glad that you got outside for a walk - that's first. Ah, but what a bore about the vitamins - just one more thing to organize, right? I think Jim will help you until he absolutely can't anymore. I think he will always want to do his 'exercise' with you and Jon. Bless him. And of course you are right about love being the centre of everything. Here is a blog post I wrote about 10 years about Cat and disability/caregiving families here.https://www.donnathomson.com/2012/03...on-in-cat.html It will give you an idea of what it's like here. Tourists generally don't have to go to the doctor here, but if they do, they'll get good but very basic treatment from a couple of nurses and one GP. There are no resorts here, only cottages and beach shacks that function as restaurants (basically picnic benches on the beach). It's very remote and beautiful but no one with anything complex could come here. It is truly the way life used to be and family is very strong. People look after each other. Like you do. 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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  5. #873
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    ((((((Donna)))))) ~

    Thank you for sharing your blog post, which I do remember reading, when you initially posted it. Please forgive me for being foggy.

    It takes a village, doesn't it? Indeed. They all have to rely on each other. And wonderful, loving, dedicated people, like you and Jim giving of yourselves to them. Blessings on you for the gifts you bring to them. You are ambassadors of love and caring.

    I posted in Jon's thread about our joint lift of Jon last night, which did go well. Yes, you're right. Jim will do whatever he is able to do as long as he can. That is the place from which he is drawing this need to help me now. He can do it. We are careful, and he still has the physical strength to help me do this. He hasn't had that strength for awhile, so this is encouraging. Perhaps his white blood cells are returning?

    I wish that he would drink more Orgain shakes, but he has an aversion to cold drinks. I get that. He's always cold anyway. Thankfully, he loves his cold morning fresh squeezed orange juice, full of Vitamin C.

    VULNERABILITY

    Today, Jon's nurse visited, and later John visited. Both of them are becoming lax in the mask, gown, gloves protocol.

    Jon's nurse loves Jim and Jon so much, and she's very affectionate. She's our family. She leaned in to give Jim a kiss on his forehead, mask on, but no gloves or gown. When she left, she was without her gown and mask and hugged Jim goodbye.

    John sat down in the living room to visit with Jim and me, before turning Jon. He had his mask on, then he took it off to sip his soda.

    Both of them take off their gowns as soon as they are done with Jon. And then their masks, before they walk out the door.

    Well, this has disturbed me today, so our next visit will involve explaining to them why they have to wear the mask and gown and gloves at the door until they leave at the door. I will carry a special trash bag to collect the gowns, masks, and gloves for disposal.

    No hugging. I'm sorry, but even with a gown, mask and gloves, I feel it's too risky for Jim. And Jon. And me, because if I get sick, they get sick.

    This is Life and Death here. Jim and Jon aren't going to get over a respiratory infection of any kind without extreme intervention. And even then ...

    Both of them (and anyone else who enters our home) are carrying germs on their clothes, in their nostrils, even if they are perfectly healthy and fine. You can feel great in the morning and have a fever and the flu at bedtime.

    Jon's nurse is in patients' homes caring for ill people. John works with the public throughout the county. They are exposed to germs all the time, with which we are unfamiliar. This is why we have gowns, special viral masks, and gloves. To protect us from the germs anyone brings to us.

    I love that they both love us so much and give of themselves to help us in the most extraordinary ways. But, I have to protect us from their germs.

    How much does it hurt me to deny hugs to Jim and Jon? So very much. But I don't want to lose them to a viral infection, which could have been prevented with more careful attention to protection. That pain is indescribable.

    When John leaned in to hug Jon today, Jon reached up and was attempting to pull the mask off of John's ear. He wants to see John's smile. He wants to see his nurse's smile.

    The very things that Jim, Jon, and I need the most, smiles and hugs, we have to deny now. It's so unfair. John and Jon's nurse need to show that affection too, because their hearts are entwined with ours.

    We can still enjoy our time together, laughing, catching up on each other's lives, sharing stories. It's not grim. It's just very different than what we've always done. And it seems more important to do that now than it did before. Yet, it is life-threatening, so it must be curtailed.

    Please wish me luck in explaining this to John and Jon's nurse. There will be tears.

    Thank you, Donna, and all of our friends here, for your continuing love, prayers and support. These aren't just words ... they are truth ... we are so grateful for you and we do pray for you and your loved ones every day.

    We Love You!

    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. #874
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    Oh Rose, I am sure that there will be tears, but there will also be understanding. What about if you could invent your own personal version of a hug without touching? Like saying "I love you" or "I hug you" and just holding out arms to each other - this could be like a secret handshake except it's a virtual hug. Could that work? Because some replacement for a real hug must be found because this is so serious.

    Yes, we love our friends in Cat Island and we have a very special in our hearts for our disability parent families and their children. But there is so little we can do for them. Of course we bring down a whole suitcase of gifts but it doesn't really make any difference to daily lives that are really hard. At least we can show love, at least that.

    I'm encouraged that Jim seems to have more energy! As you say maybe that means a better WBC?

    Rose, I send you love from Cat Island and I hope you can feel MY virtual hug!
    xox 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. #875
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    Smile

    :) Prayers continue and I send a virtual hug for you, Jim and Jon. Jeanie :)

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  11. #876
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    Rose, I totally understand your frustration with the gown situation. You are right to have these concerns and address it. That said it's not easy to do that with those you love. But I'm certain they will understand your concerns. It takes just one slip up to cause a dire situation. I certain also that you will address it with love and respect as always. Donna had a good idea about finding your own special way to share the "love" These are a couple of ASL signs for love
    https://www.lifeprint.com/asl101/pages-signs/l/love.htm
    https://images.prod.meredith.com/pro...tickers-decals

    I'm pretty sure if you asked them to just "sign the love they will be happy to do so. Keeping your family in my daily prayers.
    Mary Grace

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  13. #877
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    What a beautiful idea to use sign language! This gesture is very powerful. Great idea, Mary Grace!
    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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  15. #878
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    ((((((Hugs to All)))))) ~

    Thank you so much Donna, Jeanie and Mary Grace for your hugs and suggestions.

    There is no absence of love being demonstrated between us and John and Jons nurse. We all say I love you to each other every time were together and in text conversations. Jim and I say Thank You all the time to them, and Jon looks at them with such love, it melts our hearts.

    When theyre gowned and gloved, and Im gloved, we pat each other on the arm or the shoulder as an affectionate gesture.

    Unfortunately, nothing can replace the human touch, especially a hug. When we embrace someone, we become a unit with that person for that moment. In each other's arms, we feel safe, secure, comforted, consoled, calmed, reassured.

    Jim and I show our affection for each other by holding hands, kissing the tops of our heads (when Im sitting, Jim kisses my head; when Jim is laying on the futon, I kiss the top of his head), a glancing caress on the arm as we walk by each other, etc.

    But the most wonderful times are when Jim comes into the kitchen as Im cooking, taps me on the shoulder, and opens his arms. Every second of our 26 years together are contained in that hug, without us saying a word.

    I know that John and Jons nurse will understand my concerns completely and will happily comply with my request. They know how vulnerable Jim and Jon are (and me, because Im no spring chicken or healthy specimen!). We will miss our hugs, but well all still be together working toward the same goal with abundant love in our hearts.

    I cant thank all of you enough for lifting us up and hugging us from afar, for praying for us and sending us positive, healing energy.

    Final note ~

    As I was coming down the street this morning toward home after my walk, I spotted a long time neighbor, who is from the Phillipines. She likes to hug me, so I try to stay several feet away from her when we chat.

    Today she said, as usual, You dont walk much any more. Why?

    I replied, I do walk almost every day, just at different times in the morning, because I am taking care of my husband and son, who are ill.

    She said, My husband died last year. He had lung cancer.

    Can you imagine how much I wanted to hug her?

    I teared up and said, Im so very sorry. My husband has lung cancer too.

    Oh no! she whispered. Im so sorry. You are all in my prayers. I will let you go to get back to them.

    I dont even know her name, after all of these years, weve never exchanged names. I will definitely correct that the next time we meet. Perhaps someday, she and I will hug and weep together.

    Meanwhile, we keep walking.

    We Love You!

    ((((((HUGS))))))

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

    Still no CAT scan results posted on Jim's health portal. Scanxiety continues.

    Today, we had a message about Jim's radiation oncologist consult on Monday. "This is a reminder that you have an appointment with Dr. D on Monday at 9 a.m."

    WHAT?! NO!

    By the time I listened to the message it was after 5 p.m. I called anyway and left a terse message: "My husband has an appointment with Dr. F at 8:30 on Monday. He does not have, and he should not have, an appointment with Dr. D. Please cancel the appointment with Dr. D and confirm the appointment with Dr. F."

    We will both be furious if Jim gets there on Monday and is told he's seeing Dr. D. He will refuse, and he'll get angry, although I'll warn him not to do that. Still I don't blame him. They keep giving him Dr. D, because he saw her for his skull neoplasm. That is exactly why he doesn't want to see her again.

    GRRRRR ...

    Meanwhile, Jim has been quite active the past 2 days, while Jon has been ill. Last night, as I was resting on Jon's chairbed, Jim microwaved soup and put frozen samosas in the oven for our dinner. We're both so tired that we just grab whatever we can when we can so we are at least eating something.

    I thought that he might nap this afternoon, but he stayed awake watching movies on TMC to be available to help me with Jon. I suspect that he will sleep soundly tonight.

    We remain hopeful and positive. It's the only way we know to keep moving forward.

    Thank you all so much for your love, prayers, support and constant friendship. You and your loved ones are in our prayers too.

    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. #880
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    ((((((Hugs to All)))))) ~

    Jim can't sleep. He's stressing over Monday morning's appointment and whether he's going to have to confront a Dr. D vs. Dr. F issue. I've tried to reassure him repeatedly that I have handled it. I called and left a message last night to cancel Dr. D and confirm Dr. F. I sent an email to Dr. K today telling him about the conflicting appointments, with names of the representatives who called us.

    I told him that if there is a problem, he is to: 1) call me first; 2) tell them to call Dr. K's office and get it sorted out. I will also call Dr. K's office and the rad onc desk to speak to the rad onc rep.

    This is so upsetting that they would put Jim through all of this. He's nervous about his CAT scan results, and his bone marrow biopsy results, about what can be done, what the risks are, what awaits him. He should NOT be struggling to get an appointment with his doctor of choice, who Dr. K referred him to in the first place. He should not have to be reliving the nightmare of Dr. D and her mistreatment of him.

    Jim will tell Dr. K how upsetting this was for him on 3/14, and I will probably write a letter of complaint, if things don't go well on Monday. I've done all that I can to get this sorted out. And I shouldn't have to be doing any of it, because I am also affected profoundly by waiting for results and wondering what is next.

    Big Sigh. Long Day. Long Night Ahead.

    Thank you all for your love, prayers and support. We love you and pray for you and your loved ones.

    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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