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Thread: Jim's Journey

  1. #501
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    Default Love, Mercy, Peace

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

    About 10 minutes after I crawled into bed at midnight, Jim called to me, "Rose? Are you in bed?"

    Well, yes, of course.

    "I'm having a bowel movement!"

    Finally, success!

    Jim felt immediate relief. I rearranged him in the bed, returned his blankets, and he fell asleep for a few hours, as did I.

    With that out of the way, he was able to eat this afternoon. A chicken sandwich, with vegenaise, butter lettuce, and sliced English cucumber. Unsalted Kettle chips. So far, no intestinal distress from the chicken, but it's only been a couple of hours. He's back to sleep again.

    BUSY, BUSY, BUSY

    I managed to put my clothes in the washer and dryer, so I'll have something fresh to wear tomorrow. Still no shower. The plumbing problem is weighing heavily on me. I haven't had the time or energy to clean out Jon's closet. Jim sleeps on and off all day and evening, and when he's awake, I am taking care of him, fetching things for him, trying to do housework, etc.

    Jim tends to ask me to do things for him, while I'm doing something else for him. I'll bring him something, and then he'll say, "Oh, and could you bring me xyz?" So back to kitchen to get xyz. He never drinks his tea or coffee. Then it gets cold. I rewarm it. Then he falls asleep, and it gets cold. I make a new cup. All day and night, every day and night. I'm glad we have a relatively small house.

    This afternoon, the rain stopped long enough for me to put the piles of trash bags sitting in the garage in the outside bins. Then, I started my laundry. When I walked back into the house, I heard the pager upstairs beeping. I had just told Jim that I was going to take care of the garbage and do laundry.

    When I went into his room, I told him I was outside. "Oh, that's right. Sorry honey."

    I'm constantly bringing in bottles of water from the garage, taking out trash, cleaning up the kitchen, running the dishwasher, emptying the dishwasher. You'd think we had a family the size of the Waltons! How can two people make so much trash? Well, Jim uses kleenex, wipes, pads, etc. Sadly, I've also had to throw out a lot of perishable food, with Jim not eating for so long.

    So, I'm pretty tired, as you can probably imagine.

    With the COVID-19 surge being predicted, this is no time to have anyone come in our home to help me do anything, including plumbing. It sure would relieve a bunch of stress for me to have the plumbing repairs done. But the feasibility of doing it is not there. Jim sleeps all day/evening, awake all night. When are we going to have them come in to work for 3 or more hours? And when will I have the window to clean out Jon's closet? Where will I put everything in there? The garage is chock full. It is driving me bonkers.

    WOUND CARE

    Today, I also changed Jim's wound pad. An ordeal to get him to roll over, so that I could access his coccyx. He thought he could lay crooked on his side a bit and lift up his bum. He tried to take the pad off himself! "NO! You'll disturb the site!" I said loudly in frustration.

    I had to remind him how we did Jonathan's wound care. "You are just like Jonathan now. You have to be in the right position for me to treat your wound. Now let's get you in that position."

    He can be stubborn sometimes.

    At last, I was able to clean the wound, apply the powder and calmoseptine and Optifoam. I'm sure that it will help with the itching Jim has been having there. The wound looks good and is healing.

    THE MARSH FAMILY IN THE U.K.

    Jimmy Kimmel interviewed the Marsh family in England yesterday. The Marsh family made a video, which went viral overnight, of a parody of "Les Miserables."

    After Jimmy interviewed them they did another parody performance of another Les Mis song.

    The Marsh Family on Jimmy Kimmel Live

    https://www.youtube.com/watch?v=QBpJvNQzqrA

    “One Day More” from Les Miserables

    https://www.youtube.com/watch?v=DZafX_U5aqs

    LADY GAGA AND WHO/GLOBAL CITIZEN CONCERT APRIL 18

    Also Lady Gaga has appeared on Jimmy Fallon, Stephen Colbert, and Jimmy Kimmel over the last couple of days announcing a WHO/Global Citizen sponsored/supported worldwide concert to be aired on CBS, NBC, ABC on online on April 18. No time has been stipulated yet.

    Lady Gaga has tapped the CEOs of IBM, Apple, and other corporations for donations to fight COVID-19 worldwide. More than $35 million has been raised so far. She says it isn't a fundraiser concert. No one has to contribute. We just sit back and enjoy the entertainment and come together as one.

    The guest list includes Elton John, Sir Paul McCartney, Stevie Wonder, John Legend, Keith Urban, and many more artists, who will perform remotely from their homes.

    Many celebrities and show hosts are doing remote shows from their homes or studios/offices. Lady Gaga has taken it a step further by bringing artists together for a spectacular concert. And she isn't asking us to donate. She's going after the guys with all the bucks. And that money will be used to help feed and support people in need during the pandemic and beyond.

    It is something for us to look forward to, while we live on the edge of dread and fear. The message will be unity, hope and love for one another.

    I'll be watching as much as possible. I'm sure it will be on YouTube in segments, after it airs on network TV.

    THE COST OF RADIATION

    We just received another Medicare breakdown notice about the costs and payments made for Jim's radiation last October-November.

    Are you sitting down? Of course you are. Well, hold onto your chair.

    $219,000.

    For 15 radiation treatments lasting about 20 minutes each.

    That doesn't include previous charges on notices we've received. I'm estimating the total is close to $250,000.

    Of course, Medicare paid a paltry amount compared to the amount charged for services.

    Without Medicare, Jim would be dead, and I would be homeless.

    Also, Medicare denied payment for Jim's ambulance transport for the blood transfusion and for his gut drainage. That's about $2,000 for each one.

    In my spare time, I want to call Medicare and say this:

    "In case you haven't noticed, my husband is a Stage IV lung cancer patient. That should be obvious when you look at the payments you have been making for his care over the past 3 1/2 years. It shouldn't surprise you that he's weak and nonambulatory now. Therefore, when he has to go to the hospital for any kind of physician-ordered procedure, he has to travel via ambulance.

    When Jim's oncologist orders a blood transfusion immediately, or a paracentesis to remove 17 lbs of fluid in his gut immediately, am I supposed to call Medicare and ask if you'll pay for ambulance transport for him to have these vitally needed procedures?

    Every single charge to Medicare for Jim is because he has Stage IV lung cancer, which he has been battling bravely and valiantly. But you draw the line on an ambulance transport to allow him to access the care he needs to keep fighting? Well, shame on you.

    Because if I need to call that fantastic ambulance service again for Jim, and they won't come for him, unless I pay them for these two transports you denied, it will cost more than money. It will cost precious time, of which we have little left.

    Shame on you again."

    Our health care system is broken. During a pandemic, that is a tragedy.

    Stay home. Stay well. Keep praying, and sending love around the world.

    We love you and pray for you and all of your loved ones every day. We pray for all of the health care providers, the delivery persons, the grocery and pharmacy workers, the people working to make ventilators, masks, gowns, and all the PPEs our heroes need during this crisis. Yes, they are heroes. And they need our support and our prayers.

    Love and Mercy, Peace on Earth ~



    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  3. #502
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    Rose, if your Medical Emergency Unit has the program there, it might be wise for you to think about joining. I can pay $65.00 per year and everyone in my whole household can use it as often as they need to.

    Agate, said they had it in Oregon and she thought it cost $55.00 per year.
    Virginia

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    Hi Rose,
    Wow, what a life you are living with Jim! It is extreme, that is for sure. Looking after each other - Rose, you are a CARE hero. What strange times we are all living through. Yesterday morning we heard from Nick's full time helper that she was in a covid testing site for her husband who had symptoms. Luckily today, we heard that he tested negative. Wow, we are living in stressful times.
    We love you guys - thinking of you and praying all the time (we figure that Easter prayers are like the Daily Double on Jeopardy! ) xoxox 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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  7. #504
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    $219,000 WOW. That's not right.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  9. #505
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    Default Yhank You!

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

    Virginia ~

    We pay $75/year for paramedic coverage and have for decades. Of course, we've had paramedics here countless times for our boys. The fee covers the cost of paramedics with our fire department. They bring a private ambulance for transport, which charges Medicare.

    We don't need paramedics/fire department for Jim's ambulance transport to/from his blood transfusion or his gut drainage. Those are not an emergency. I call the ambulance service directly and ask for transport. Medicare denied it, because we didn't have authorization. I don't know what that means and should find out by calling them.

    Thank you for your suggestion and please know that Jim and I are thinking of and praying for you.

    Donna ~

    So relieved that Nick's helper and husband don't have COVID-19. I hope they don't have anything contagious, like the flu, because that can also be dangerous for Nick.

    Have you had any more family visits? And how did the sports trivia virtual gathering go?

    I am so proud of our Governor. I watched his daily update today. Articulate, caring, factual, honest. He was discussing PPE for caregivers, and he included IHSS careproviders. That really warmed my heart, as a former IHSS careprovider, and as an advocate for the IHSS program for 34 years. In home caregivers will be given masks, gowns, and gloves.

    California has enough ventilators that we were able to loan some to New York, Illinois, and a couple of other states. Our state is on top of everything, and I'm impressed.

    Every evening at 7 p.m., I hear car horns honking all over our city. We live on a hill, so the sound carries up to us. No one in our neighborhood is honking their horns, so I'm not going out to the driveway to honk our van horn, but I'd like to do that.

    This is the community's way of thanking all of the health care workers, delivery and grocery workers, and everyone on the front line serving us bravely.

    I sit quietly listening to the horns, and it continues for a half hour, praying for all of our heroes, and giving thanks for all of those people honking their horns. Tears steadily streaming down my cheeks.

    Thank you for your prayers, as always, and you know we return them to you and your beautiful family.

    funnylegs4 ~

    Actually, $219k is just a part of the cost of Jim's radiation. By my rough estimate, so far, the total is about $250k, and there may be more billing results to come.

    I wish I'd been keeping a log over the past 3 1/2 years of the costs. I have them all in the Medicare summaries we receive every month. But I haven't tallied every thing he's had done. Opdivo infusions were $9k per infusion, and Jim had so many of those. Biopsies, scans, etc. I'm sure it is in the millions by now.

    What is stunningly important here is that Jim and I have paid nothing for all of these procedures, tests, hospitalizations, and infusions.

    Americans shouldn't have to wait until they reach 65 years of age to have Medicare coverage. If Jim had cancer in his early 60s, we would have lost our home, and he would have died. Because we have Medicare, which certainly never pays the full cost of anything, we are not held accountable for any of the cost.

    Every American, every human being, deserves this kind of care.

    We pay premiums, and we have supplemental private insurance for Parts B and D, for which we pay. But the amount we pay in premiums is a pittance in comparison to the cost of Jim's cancer.

    This got long... so I'll update on Jim in another post.

    Thank you all so much for walking beside us, loving and praying for us. We love you, pray for you and your loved ones, and send you positive, healing energy.

    Send prayers around the world!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  11. #506
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    Default The Chicken Came Home To Roost

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

    As I predicted, Jim's digestive system did not appreciate the introduction of chicken.

    About 12 hours after eating his first small bites of chicken, Jim vomited the usual mucous and fluid ... and chicken. Later, massive diarrhea. And I don't think this is Keflex. He's only taking one a day, and he was fine until he ate the chicken.

    I held the basin up to show him, "You see those bits floating around in there? That's chicken." Then I emptied it into the toilet, just shaking my head.

    Before he tossed his chicken yesterday, he asked for an egg and veggie ham sandwich, which I prepared, of course. He took one small bite, then asked for the basin. Thanks to chicken, Jim hasn't had a decent meal for 2 days now. Applesauce was all he could tolerate today.

    After the BM last night, I told Jim that we won't be trying anymore chicken. He agreed. "Give it to John and his family."

    Unfortunately, I wasn't able to contain all of that BM, especially since Jim's left leg was aching from using it to push up in the bed. My goal was to give Jim a bath today and change his sheets.

    After he was well situated, I needed breakfast and made my favorite "mock eggs benedict."

    Unbeknownst to me, Jim had put the head of the bed down and laid flat on the bed waiting for me to come in to pull him up and change the sheet. By the time I finished cooking and eating, he had been laying flat for too long.

    "Why did you do this, while I was cooking and eating? You knew I was going to do that."

    "I was just getting ready for you." Jim doesn't keep track of time well now. He also doesn't think clearly.

    I pulled him up in the bed using the bottom sheet, cleaned his nether regions and applied a new pad. Then, he began coughing, and coughing, and so on. Breathing treatment, then codeine cough syrup. He's sleeping now.

    He gets heartburn/indigestion frequently, and I feel that might be because he doesn't have enough food in his system. A few medications and no food. Not a good combination.

    I had a shower today! Alert the media! It felt wonderful. Clean clothes.

    Nonstop rain here for nearly a week, and I think we've had enough for now, with flash floods being predicted every hour. No walks for me. I am already battling depression and sorrow as Jon's Angelversary approaches. The effect of the gloominess and the negative ions in the atmosphere during rain isn't helping me. Oh, and the ants invading our kitchen. And the plumbing leaks ...

    For now, that's our story, and we're sticking to it.

    We love you all and give thanks for the blessing you are in our lives and pray for you and your loved ones every day.

    Be safe. Stay home. Be well. Be strong. Have faith.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  13. #507
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    Hello my dear Rose,
    I am so sorry that poor Jim didn't digest the chicken. I understand that he is wanting some of his youth back - just to have some choices. It must be so hard. But it is you I worry about most, Rose. I can't believe everything you are doing just physically, nevermind the grief, the loss, the lack of sleep and the constant worry. I am so glad you got a shower - small mercies!

    We are OK over here. Nick went to the hospital yesterday for his pain pump refill and we were quite worried (so was he!). But he wore a mask, gown, sunglasses and luckily was in and out in under 1/2 hour. They were waiting for him and no one else was there. The refill went without a hitch. We phone before and after and he was very relieved to get home OK. Now all his staff are wearing masks (as they should right now) but Nick doesn't like that much. We told him the masks are for the same reason there is no premier league soccer or NHL right now. He just sighed deeply. My brother in law is going into the hospital on Sunday morning and will have his surgery on Tuesday. Thank goodness it will soon be over. He and my sister are managing their anxiety quite well, I think - the best they can, anyway.

    Easter will be odd this year with no family here. It will just the two of us and we'll skype Nick and put the iPad on the dining room table so he can 'join'. We'll have baked ham, scalloped potatoes, asparagus and vanilla cupcakes with chocolate easter eggs. Pretty traditional :)
    I send my love and prayers, Rose. I hope Jim feels much better soon - hopefully his body will forget he ever had chicken.
    Donna oxoxo
    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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    ((((((Hugs to All))))))* ~

    Donna ~

    I'm relieved that Nick's pump refill went quickly and smoothly. I'm sure you were concerned too. Remembering what a scary time he had with the pump surgery not long ago, I'm so grateful that Nick is well.

    Jonathan eventually got used to people wearing masks, especially since we had to wear them every time he was in ICU. Periodically, he would try to remove John's mask, when they hugged. Oh how I miss those precious moments they had.

    I can understand Nick's feelings about the masks. They hide smiles, for one thing. And I'm so sorry that Nick is missing his soccer and hockey. We're missing Dodgers, because we and John really felt that this would be their year. They have such a great team, and it's a joy to watch their games. It doesn't feel like Spring without baseball.

    Jim is missing soccer too. And Liverpool was so close to winning it all, before the games were cancelled. Please let Nick know that Jim relates well to his disappointment.

    Many prayers for your brother-in-law and sister. The anxiety of waiting for this surgery must be enormous, so handling that well is truly remarkable. Sending tons of healing energy to them and your entire family.

    I'm sure that your Easter dinner will be delicious, as always, but lonely without your loved ones with you. Your menu is similar to the one from my youth and prior to becoming vegetarian. We alternated between scalloped and au gratin potatoes. Green beans were usually our veggie. My mom made an ambrosia salad with canned mixed fruit, marshmallows, and Cool Whip. My mom didn't enjoy cooking, so meals were simple and often from a can or frozen.

    FOOD/EASTER DINNER

    I don't know what Jim and I will have for Easter dinner. At this point, Jim doesn't have enough appetite to warrant fixing a big meal. He ate almost half a Boomin' Berry bagel with cream cheese this afternoon, after he woke up from sleeping all morning. Then he asked me for yogurt and diced peaches (not fresh but organic in small cups). He fell asleep before he took one bite. He took a Tylenol/Codeine for pain in his legs and hips from turning side to side so I could change his sheet. That was an ordeal for both of us.

    Frankly, I am not up to standing on my feet for hours cooking. But I would cook anything for Jim, if he could only eat it. I have thrown out so much food in the past 6 months. I have small and large red and russet potatoes sprouting in the vegetable drawer. Avocados going over in the fridge. Bread I just threw out, which expired in January. Jim was into eggs for a bit, so I ordered more eggs, and now we have too many.

    I texted John yesterday and told him that we have chicken, lettuce, and cases of water for him and his family. If the chicken hadn't caused Jim's intestines to revolt, I was planning on making mashed potatoes, peas and carrots, veggie gravy, and chicken for Jim for Easter.

    I WILL NEVER "GET AHEAD"

    Today, after pulling Jim up in bed, I had to vacuum, because ants were all over the kitchen, crawling along the threshold to Michael's and Jon's room. On the stove, on the tea kettle, in the sink, on the counters, everywhere. Relentless rain for a week has driven them in.

    First I swiffered the floors, then I vacuumed the rugs and the ants. I set a boric acid trap for the ants with a prayer they will slow down now.

    Then, as the rain had stopped and the sun was out, I checked Michael's pond. The fountain was sputtering. Wind and rain filled the pond with debris, and I have not scooped out algae for too long. So, I bent down and pulled up the fountain motor, cleaned off all of the gunk, replaced it, and it's working. Then I used the pond net to scoop out the scum, leaves, etc. I hoped the waterfall would work again, but it hasn't yet. The fountain is going full blast now, spewing dirty water.

    Angel lights were knocked over, so I righted them. The sunshine today should give us a lovely glow from the angels and roses tonight.

    Oh, and while Jim was sleeping early this morning, I took the trash bins out to the curb in the rain down our steep driveway.

    There is so much work to be done here, and I am overwhelmed. As I was folding my clothes yesterday, which had been in the dryer for a couple of days, Jim remarked, "Oh, are you getting ahead of the laundry now, dear?"

    I rolled my eyes so hard, I'm surprised they didn't pop out of their sockets. "Oh, yeah, honey. I'm way ahead." Clutter everywhere in the house, the garage, the yard. Laundry literally piled up to the brim of the boxes hiding them from the street when our garage door is open. There's an Amazon box at the head of the futon bed in the living room, which is in my way when I try to open the shutters on the window. I keep saying that I'm going to empty out all of the stuff in that box and move it. I haven't. It's been 3 weeks now.

    MISSING JOHN

    Yesterday, John texted that he wants to help us any way that he can, that he misses us, he misses Jonathan along with us, that he understands why he has to stay away from us, because he's still working. He or anyone near him could have COVID-19 and be asymptomatic. Even with a gown, mask and gloves, we would be nervous.

    In so many ways, John is a son to us. We love him so much, and his wonderful family, and they want to be here to help us but they can't, because of this virus. We are already physically separated from our sons, Jonathan and Michael, so being separated from John is an additional emotional sorrow for us now, when we need him the most.

    When I told John about our plumbing problems, he said that they had a leak in their plumbing again (like the 6th time in 17 years?) too. They had plumbers come in and rip everything apart, including drywall, then put it back together. Three weeks ago.

    I think we need to figure out how to use Facetime on the iPad, so we can actually see and talk to John and our other loved ones. Of course, John is the one, who would have to tell us how to use it.

    That is our long story for today.

    LOVE AND HOPE

    We send our love and prayers to everyone, with hope that this crisis will end sooner rather than later. We must be strong. We must support each other. We must find moments to laugh, to relax, to cope, to cry. We must stay connected, which we can do thanks to the internet. We must think of those in the world, who do not have access to the internet. Imagine how alone they must feel.

    Please join us in sending love and prayers around the world, honoring those, who courageously work on the front lines to save lives and help us all, and remembering those, who have perished during the pandemic and their bereaved loved ones, who may not even know where their loved one's remains are located.

    We must count our blessings and cling to hope. When the horns stop honking at sunset, and the people stop singing from their windows and balconies, when we give up, hope is lost.

    This virus doesn't discriminate between countries, cultures, religions, ability, age, gender, or any other demographic. Everyone is vulnerable.

    So, we have to take care of ourselves and each other.

    Thank you so much for taking care of us. We will do our best to take care of you.

    Prayers for all ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  17. #509
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    Hi dear Rose,
    Ohhh it is all too much - too much loss, isolation, grief, pain, household chores and worries... So I think it's time to escape even momentarily and enjoy these short videos that are doing the rounds in our family. Nicholas loves them and I think you and Jim will too! https://www.theguardian.com/lifeands...e_iOSApp_Other
    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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    Thumbs up Send Prayers Around the World!

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

    Donna ~

    Thank you for sharing the video. I saw the race to finish the kibble video not long ago and shared it with Jim. He got a kick out of it too. Here's Andrew Cotter's twitter site, if you want to keep up with his assorted videos featuring Olive and Mabel:

    https://twitter.com/MrAndrewCotter?r...mabel-go-viral

    I love those dogs! I love all dogs! Maybe you could start making fun videos of Daisy and her antics?

    By the way, how did the sports trivia video gathering go? I think I asked you that in a previous thread. Hoping you all had fun and will do it often.

    JIM'S UPDATE

    Last night, Jim ate most of the filling in an Amy's veggie pot pie. Half of an Orgain shake. About 4 T of oatmilk yogurt, diced peaches, and cashew milk ice cream. He tried to eat some cashews and walnuts during the night, but he didn't have his dentures in.

    Dentures in today, after sleeping all morning til 1 p.m., Jim had 1/2 jumbo veggie hot dog, with 2 tsp of carmelized sweet onion and a tiny bit of Dijon, 1 Carr's water cracker with cream cheese spread, a few unsalted kettle potato chips.

    We were watching The Treasure of the Sierra Madre, and after he ate, he fell asleep.

    Plumbing Woes

    When I opened Jonathan's closet, I saw that the leak is getting worse. I have to clean out that closet somehow, and I intended to get started after we had "lunch." But then, Jim went to sleep as he always does. I could just scream! Inside I am, actually. Why is this happening NOW?! Like we don't have enough crises at one time already here! Aaaggghhhh!!!

    If Jim could just sleep at night, then be awake in the daytime, I could clean the closet, and schedule the plumbers for when he is awake. Currently that window is 7 p.m. to 7 a.m. When he's awake, I am pulling him up in the bed, changing his pads, cleaning him up, fetching a hundred things for him, making food, throwing out food. Trying to keep the kitchen clean. Praying for a chance to do laundry.

    When can I address the leaking toilet and shower? When???!!!

    Just Tired and Frustrated

    By 9 p.m., I am exhausted, and I still have to keep going until at least midnight and expect to be awakened at anytime thereafter.

    Last night, I told Jim that I was going upstairs to turn off the lights, brush my teeth and grab the phone to bring downstairs for the pager. Five minutes after I got upstairs, Jim paged me. I ran downstairs thinking he was having a BM or in distress. When I bolted into his room, he looked at me, smiling, "Honey, it's time for you to go to bed. I just wanted to get you down here so you could go to bed."

    "Jim, I told you I was getting ready to go to bed, before I went upstairs. I haven't even brushed my teeth yet. Please don't make me run downstairs to tell me to go to bed. Please."

    He has no real concept of my hip and back pain, particularly as it relates to hauling buns downstairs, when the pager goes off. The beeping is very persistent and loud. It's alarming, of course.

    He keeps telling me to move all of my bathroom stuff downstairs to that bathroom. The downstairs bathroom is the size of a postage stamp, and there is no room for my stuff on the counter, in the drawers, or the cabinet.

    I am terrified that I'm going to trip over all of the cords connecting all of the equipment to a main surge protector on the window side of Jim's bed. It's an obstacle course, which I curse every time I go to that side. To get them all organized and out of the way requires a lot of bending, stooping, and moving the side cabinet. Another job for John, if we didn't have COVID-19 lurking everywhere.

    The way it is now is what I had to do that night in February, when Jim insisted he had to go to Jon's room. I spent 2 hours putting it together as best I could, and I haven't had the opportunity to rearrange all of the electrical cords since then.

    I'm just terrified of this leaking, and it has to be repaired very soon. I don't know what to do. I feel very much alone right now.

    Something Good

    On a positive note, the boric acid trap got rid of the ants. And the floors and rugs are clean. And I was able to run the dishwasher after the ants left.

    Oh, and I took a walk this morning, as the rain stopped, the sun was out, and the trails were dry. My rusty bones precluded walking my normal distance, which lately has been 3/4 mi instead of 1 mi. Today, I walked .49 mi.

    Look at my signature. Tomorrow is Jonathan's First Angelversary. He was 49, when he passed. For nearly 17 years, it has been astonishing at how frequently I see the number 32 (Michael's age). When I check the time, it might be 11:32, 8:32, 4:32. It's uncanny. Since Jonathan's passing, I now see 49 and 32 frequently.

    This occurs far too often for it to be a random coincidence. I strongly believe that Jonathan and Michael are sending me a message to assure me that they are ever present with Jim and me. They have always given me the strength to persevere, no matter what obstacles need to be overcome.

    (Edited to add: I just posted this message, and my post total is: 4,649.) :


    Earth Mother 2 Angels's Avatar

    Join Date
    Oct 2006
    Posts
    4,649
    There it is! I didn't plan this, I promise! Really, I rarely pay attention to my post count. Hello, my beloved boys!

    Jim talks about his better understanding of some of what Jon and Michael endured all of their lives. They are heroes to him, and he longs to have their determination. And, wow, does he have that, considering all that he's dealt with in the past 3 1/2 years.

    Jim also feels guilty about all that I have to do to care for him and manage our home and finances, etc. I can't hide my pain from Jim. He sees me, and he hurts for me. I try to stifle an "Ouch!" or a groan, but it just comes out as an immediate reaction.

    As much as possible, I smile through the pain and gladly get whatever Jim wants or needs. We try to add humor where we can. Today, as we were watching "Robin Hood," with all the swashbuckling of Errol Flynn, I asked Jim, "Did they actually make satin in those days? Look at the elegance of this wardrobe! Brocade, silk, satin, sequins. Really?"

    Then, we had some fun deciding what was "swash" and what was "buckling."

    At any second our upstairs toilet may crash through Jon's closet ceiling, but we're having a chuckle anyway.

    Of course, Jim is still sleeping, so I'm still babbling.


    SEND PRAYERS AROUND THE WORLD!

    May we flatten the curve by staying home, social/physical distancing, washing our hands, washing all parcels, mail, and food orders with antibacterial wipes or isoproyl alcohol, or hydrogen peroxide, wearing masks and gloves, when we leave our homes for urgent needs, and thinking of our neighbors around the world, who are doing the same thing we are.

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    And pray for all of the scientists, who are trying to find treatments, a vaccination, and a cure for COVID-19.

    We love you all and thank you for the blessing you are in our lives. We pray for you and your loved ones to be well and safe during this crisis.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Last edited by Earth Mother 2 Angels; 04-11-2020 at 04:14 PM.
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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