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Thread: Jim's Update

  1. #501
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you for your prayers and understanding. "Run, cry and scream" ~ yes, that's when I have what I call my mini-breakdowns. Thankfully, they do not last, but I have to get it out. I hold on to A LOT! And sometimes, when it's all overwhelming, I just need to let it surface and deal with it.

    What color are the roses Kathleen gave to you? Flowers are a lovely gift, and plants are also special, because they continue growing and reminding you of the love in the gift.

    Jim had a rough day Tuesday, RA pain all over. He had to take 20 mg Prednisone. It worked, thankfully. He's taking the lowest dosage he can, when he has pain, but he has to have it, because the pain is immobilizing.

    We're nearly out of our vitamins, so I planned to go to Mother's Tuesday, but cancelled that, since Jim was not up to being on his own. Instead, I ordered from another store through Instacart. I love having groceries delivered! Saves me so much time and energy.

    THE ROAD TO MOTHER'S

    So Wednesday, Jim was feeling well, and I was off to Mother's. Gorgeous day, crystal clear blue skies, about 70 degrees, sea breeze wafting. The 20 minute drive takes me past the various places I've lived in the city throughout my life. My parents moved every few years.

    I also drive past the cemetery, where they are buried, along with my former in-laws, and several children, who were friends of Michael and Jon.

    The summit, where my best friend at the age of 13 and I stood, among avocado and orange groves, and horse stalls, is now a private golf course/club. We could see the mountains north of us and the ocean south of us. It was spectacular.

    This is also part of the route I took to take my boys to and from their schools.

    So, when I go to Mother's, I am literally driving down Memory Lane.

    I wore my mask in the store. I bought products, which I can't find in other stores, in duplicate and triplicate. I had to carefully check all of the expiration dates, because there were only a few of each item on the shelves. Most of them have less than a month left to expiration. But we have a freezer!

    My last stop was the vitamins. I had to wait for the young woman, who attends to that section to finish a conversation with 4 other women. I was nearing the hour mark for being in the store, and my back was aching, and I was having trouble standing straight. Finally, she talked to me, and when I asked her where the aging multi vitamins are, she said, "Oh, I think we stopped making those."

    As if she'd hit me on the back of my knees, I began to feel like crumbling. "PLEASE don't say that! That's the main reason I come here! We've been taking them for 20 years!"

    I pushed my overflowing cart behind her, and she leaned down to the bottom shelf (yes, these are vitamins for OLD PEOPLE!) and said, "Oh here they are! I was thinking of something else!"

    "Give me ALL of them!" I exclaimed. Now, I was sweating. I cleaned off the shelf with 6 bottles.

    "Now I need Vitamin D3 Whole Earth & Sea."

    That of course is behind us, so I have to turn the cart around to follow her. TWO BOTTLES on the shelf! I have to find a way to order these on line.

    I get to the cashier to unload the groceries onto the conveyor belt, my bones popping and crunching. I asked the young man, who has served me before, "Please make the bags light. I have plenty of bags, and if not, I will buy more." He smiled and nodded.

    Instead of getting another cart, and offering to help me out to my car, he piled all of the bags on top of each other and told me to have a good day.

    When I got to the van, and began unloading the bags, most of them were very heavy. Cans, jars, bottles. Some less than kind words flew out of my mouth. I always remind them that I'm an old woman. Just in case they can't see that for themselves! But it never ever seems to matter. This is one reason why i hate to go to the store.

    Another drive down Memory Lane home, then unloading the van. Jim insisted on helping me. I gave him the lightest bags. He then insisted on helping me unload and put away the groceries. I worry that he will overdo and pay the price later. But he will not take no from me.

    AT HOME WITH JIM

    Later, as we were preparing lunch with all the goodies I'd brought home, Jim was being silly. He opens the fridge and just stands there. "I've gotten everything out, dear," I tell him, and he replies, "I know, I'm just looking."

    Then he said something else, I can't remember what it was now, but we both burst out laughing until we were doubled over and teary eyed.

    It's so wonderful, when this happens, because this is an excellent stress reducer. When we laugh or cry, our body emits stress hormones, like cortisol. We always feel more relaxed.

    Jim is having problems with dry mouth now, which Biotene is not helping. His throat closed up a few days ago, and he coughed up a "hard fleshy" glob. He coughs so hard, which Dr. K told him to try not to do, but he works to get the crud out, otherwise, he gags. Jim needs to talk to Dr. K about this, because I'm running out of ideas.

    I ordered Jon's supplies yesterday, so all I have to do now is schedule Jon's PT to work on Jon's lymphedema and our GI doc to change Jon's Gtube.

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

    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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  3. #502

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    Perhaps a cool mist humidifier would help Jim's dry mouth and airway.

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  5. #503
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    ((((((callyflower)))))) ~

    Thank you for the suggestion! Good idea! Our air is very dry, because we have low humidity weather-wise, and we run the heater quite a bit, because Jim is always cold.

    Tonight, I rummaged through Jim's candy jar for "freebies" he's received through his dispensary. I found one that turned out to be just right, with 10 mg CBD oil. Other hard candies just glom in his mouth, because he doesn't have enough saliva. This candy stimulated the saliva. So, we'll be ordering some of these tomorrow. The only problem is that we don't know how much sugar is in these candies, and Jim's glucose is high.

    Another problem for Jim is sleeping with his mouth gaping open. I'm certain that he has sleep apnea, but he's never wanted to pursue it.

    So a humidifier should help with that as well.

    Thank you again, callyflower!

    And how are you and your family? You're in my prayers.

    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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  7. #504

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    The cannabis products can, unfortunately, dry the mouth. Glad you found something that helped. Maybe some sugar free candies are available.

    How high are Jim's sugars? Steroids can affect that, as can stress.

    We are doing OK. My daughter turned 21 on Mother's Day. I love it when we get to celebrate together.

    I find using distilled water in my humidifier totally prevents mineral build up, so it never needs cleaning/demineralizing. I use mine every night.

    Take care!
    Last edited by callyflower; 05-19-2018 at 09:55 AM.

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  9. #505
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    Rose the first thing I just have to say is I'm so glad you and Jim laughed enjoy each other so very much!! I'm quite certain it's why you are both able to accept and push through all that you both do daily.
    I can't believe someone didn't help you out with all the bags and of course all that you spent in their establishment! That's disgraceful. I'm so glad you were able to get the vitamins.
    I loved hearing your "trip down memory lane" YO write in a way I feel like I'm right there with you whether is you and Jim laughing together or your walks or trips to the store.
    Kathleen bought me a red rose plant. It's so beautiful and fragrant. I've been picking some lilacs this week and putting them in the house they smell so lovely but won't last long. Tomorrow my husband will till my vegetable garden so I can get it planted. Tonight I am all alone!! It never hardly happens. I'm just enjoying the peace and quiet (after a trip to the dollar store to get Kathleen workbooks) My son is in Ohio with his girl friend, My daughter is at her Yoga teacher training, and Kathleen and her dad are at a chicken barbecue. It's a fundraiser for the Miracle League(her sports teams). Continued prayers that your family will thrive, be healthy, and most importantly continue to laugh together!
    Mary Grace

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  11. #506
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    ((((((Hugs to All)))))) ~

    callyflower ~

    Congratulations and Happy Birthday to your daughter! How nice that you were able to celebrate together. It's only fitting that your daughter's birthday and Mother's Day should be the same day!

    Jon had a humidifier about 8 years ago, and I remember using distilled water, and washing the filter every day, and the container with vinegar and water, then setting it outside to dry.

    What brand of humidifier do you have?

    ICU Respiratory Therapists have chatted with me through the years about the benefit and risks of mist, either with a humidifier or with an O2 concentrator. I am concerned about the potential for bacteria with a humidifier, and I honestly do not have the energy to clean one every day, as I did for Jon.


    Jim's dry mouth seems to be a direct result of Opdivo, since he hadn't experienced it previously with chemo, and only occasionally after radiation. He was taking CBD oil during all of that time.

    Jim's glucose isn't high enough for the doctors to mention it to him, and I can't remember how high it is right now. He hasn't had a fasting blood test either. This is just results from a CMP. I know that steroids can affect sugar levels. Jim also eats too much sugar, and I have to nag about it every so often.

    Sugar free hard candy usually contain xylitol, which can cause diarrhea. Biotene is chemicals, including polyethelene glycol. So, we'd like to find a natural way to solve his dry mouth, instead of adding more chemicals to his body. I think the humidifier is a good start and will likely help his sinuses too.

    A few days ago, Jim coughed up blood. First time in several weeks. So, now we have that to keep an eye on and chart to tell Dr. K. It's waning now, with only traces of blood.

    Jim has an infusion on Weds, but no visit with Dr. K prior to it. Infusion nurse will take his blood, then get the okay from Dr. K. Jim will tell her what's been going on with him, and she will share it with Dr. K.

    Mary Grace ~

    Red roses and lilacs! How lovely! What vegetables are you planting?

    I'm glad you had a quiet evening at home. Those opportunities probably don't come around too often.

    Thank you, as always, for your prayers. Many prayers are returned for you and your beautiful family.

    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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  13. #507

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    My humidifier has a UV light that supposedly kills bacteria. Bacteria isn't really a problem anyway as fresh water goes in and is pumped out into the air. It doesn't sit and stagnate. Mine is just a plain old Walgreen's brand.

    Honestly, sugars are the least of Jim's worries, as I'm sure you know. In a perfect world we would all eat perfectly all the time. Sometimes we just want some sugar! If he isn't officially diabetic it can't do much harm.

    I hope Wedneday's infusion goes well.

    C

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  15. #508
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    My dear Rose,
    I'm sorry that the last while has been so stressful for you - but I'm glad that there are moments of light and laughter in your life!!! I am sending love and healing karma your way right now. I did find your D3 vitamins online https://www.luckyvitamin.com/p-90849...arian-capsules and if you tell me your aging vitamins, maybe I can find those too. It would be easier to order them online maybe? Then you wouldn't worry about the darned store having them. Oh and I will tell you a trick I use for grocery bags. I say, "I have a back injury so I can't lift any bags - is there someone who could put these in my car for me?" If they say no, then I look at my watch and say "say darn it, that means I'm going to be late for court". Haha that gets them! Painting Nick's room with the family today. He's getting redecorated. 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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  17. #509
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    ((((((Donna)))))) ~

    Thank you so much! I figured that they would be sold on line somewhere! Thanks for tracking them down for me.

    Our multivitamins are Mother's brand, so unfortunately, they aren't on sale on line. For years, we got them when they were under another grocery store's label, but they discontinued them. Then Mother's picked up the brand for them.

    I absolutely love your comeback, if you're refused assistance with your groceries! I always say several times, "Please don't make the bags too heavy. I am an old woman, despite looking like an Olympic athlete." And, I saw the guy hoisting up a bag to put in the cart, and even he looked like it was heavy. I took the bag from him, and it was very heavy for me. So, I said again, "Old woman. Lighter bags. Thanks."

    Usually, I don't have to ask for help, because the cashier offers it to me. Often, the person, who bags the groceries, has a developmental disability of some kind. Of course, they respond to me, because, well ... it's obvious! I talk to them, get to know them, thank them, appreciate them, praise them, and when they walk me to the car, they take charge.

    At one store, Suzanne, who has Down Syndrome, makes sure that she bags my groceries. She's been working there for 14 years, and she has all kinds of pins and badges on her apron. She is the busiest employee in that store! She's everywhere always doing something. And she always makes my bags light.

    I don't shop there any longer, because I can order on Instacart now. I miss Suzanne. And the many other hard working, kind, sweet, and helpful folks in the various stores.

    The guy at Mother's is not disabled, and he knows me, because he's there every time I go (months in between, but I spend more in my one visit than they collect in hours of shoppers buying a few items). I was surprised that he didn't offer to help me and just flitted off. I was too tired at that point to pursue it, so I just soldiered on.

    I often hear comments about what I buy during the checkout, as in, "Wow! I want to come to your house for dinner!" and "You sure eat healthy!"

    With my last Instacart delivery, I chatted with the shopper, who said he is single and eats out a lot. I said, "Being single doesn't mean that you can't eat properly at home. Look at the groceries you brought me today. Chop up some onion, peppers, mushroom and saute' in oil, add a jar of pasta sauce, boil some spaghetti noodles. Find a dressing you like, make a salad with all of the things I bought today. You will have several meals. Freeze leftovers."

    He said, "You're right. I'm using being single as an excuse to not eat properly. Thanks!"

    We'll see how he's doing the next time he delivers my groceries!

    So, Nick's remodel is in progress! He must be very excited right now, as Jim tells me that Liverpool is playing a big game tomorrow for some cup championship. There are so many, I can't keep track! We're rooting for Liverpool!

    Thank you, Donna, for helping me once again.

    ((((((Hugs and Prayers))))) to All ~

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

    callyflower ~

    At Jim's infusion today, I asked him to ask his nurse about using a humidifier, and she said, "It might help."

    When he told her about the hard globs he's coughed up and the amount of coughing, as well as the blood, she said, "That's a common side effect of Opdivo. You'll only get some relief with Biotene, and it won't last. That's the case with just about any treatment normally given for dry mouth, which aren't actually designed to treat Opdivo dry mouth."

    So, it seems, as you said, side effects are cumulative. The more infusions, the more the chances of side effects or the worsening of side effects.

    I ordered a humidifier for Jim today. It's worth a try, and maybe it will help him. But, the nurse's response, to me, is basically telling us "this is what happens, and there's not much you can do about it."

    SUGAR

    Jim has a teaspoon plus of sugar in his tea, at least 3 times a day. When we have them, Jim eats a whole Zen muffin, sweetened with grape fruit juice only, plus fruit, but still contains 14 grams of sugar per muffin. That's 3 + tsps. A whole banana has 14 grams of sugar. The little jam thumbprint cookies I get from Mother's each have 7 grams (about 2 tsps ) sugar. When he has one with his tea, he has two.

    At the hospital today, Jim went to the gift shop, because he arrived early and found a bag of "Old Fashioned Hard Candy." He bought the bag, without looking at the nutrition panel, of course. Ingredients: SUGAR, CORN SYRUP, Red, Yellow and Blue Dyes.

    Last Christmas, he asked me to order him some fruit tarts and marzipan made in England. I relented. When they arrived, I looked at the sugar content in the tiny tart ~ 25 grams! I said to Jim, "Would you sit down and eat 6 teaspoons of sugar? Because that's what you're doing right now." That was it! Gone in the trash.

    I comforted him by telling him that I ordered them for him for the same reason I threw them out, "Because I love you."

    It's not uncommon for Seniors to develop diabetes, even people, who don't have cancer or other serious illnesses. So, we both need to be cautious about our sugar consumption. And Jim's tends to be excessive, if I don't nag or remind him about how much sugar he is consuming. The odds have never been in his favor, and thankfully, he's beating those odds. I just want it to stay that way.

    HEIGHT AND WEIGHT

    Jim's nurse decided to measure his height today. In January, 2017, Jim was (as always) 6 feet tall. His height then dropped to 5'11" and remained there until today. He is now about 5'10". I didn't believe that, so we measured him at home, and yes, he's 5'10".

    To me, he's a giant though, and he said, "You keep asking me if you're shrinking. Looks like we both are!"

    At this rate, we'll be microscopic in a few years!

    That's not good. Not good at all.

    But we know the remedy, which would be suggested by an endocrinologist or an orthopedist. Boniva or Prolia, both offshoots of Fosamax. I've researched these drugs, and I know what they've done to my friends. Not going there.

    His weight is down to 156 lbs, which isn't a good trend, of course. We attribute this to his appetite loss, disinterest in food, until I put food in front of him, and his erratic sleeping, which limits his time to eat. He's also been inconsistent with drinking his Orgain, which I will now start nagging him about again.

    It's definitely not fun to be the nag and spoiler of pleasures. But that is my responsibility to Jim, as his wife and caregiver. Love isn't always easy, but it's always right. As much as he might fuss and grumble, Jim knows this to be true.

    Thank you for your suggestions, callyflower, and advice. I need all of the guidance I can get.

    Thank you all for your continuing love, prayers, support, and encouragement.

    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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