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Thread: Jim's Update

  1. #501
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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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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