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Thread: Jim's Journey

  1. #301
    Distinguished Community Member Jeanie Z's Avatar
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    :) Oh Rose how sad. I wish you had had a good day. I will add some extra prayers for you. I had a pretty blah day but no pressing problems. I hope today is going better. With love, Jeanie :)

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  3. #302
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    Dear Rose,
    My heart just sank when I read what happened yesterday. I am so sorry - it feels like an injury on top of an injury. Everything is so very fragile in your house - your grief, Jim's losses, fatigue... everything. So when anything like this happens, it not like it is for 'normal' people - you cannot brush this off. Because you have nothing extra to absorb things going wrong. I remember at the worst of times in our family feeling like someone had turned my skin inside out - so normal things hurt. Like teasing or blocked sinks. I remember just not being able to handle anything like that. And I said to people, "I just need you to be really really nice to me." I feel like that's where you are at right now. I am so glad that John is really nice to you and I hope that this problem gets sorted out with no stress. And at least now Christmas is over with all of its expectations and bittersweet memories. I send you love and peace, Rose. Thinking of you and saying extra prayers. 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. #303
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    ((((((Hugs to All)))))) ~

    Thank you so much Jeanie and Donna ~

    RANDY TO THE RESCUE

    At 8:15 a.m., I called our plumber and told the office manager, who is always so nice to me, our sad story. She contacted Randy, the owner's son (it's a family business), who was on another job. She said that Randy told her that if we have an outside outlet for the kitchen, he could help us, but he didn't want to go inside the sink cabinet where the mold is. I checked with Jim, and we have an outlet, so Randy agreed to come. She gave me a timeline of 10-12 or 2-4, depending upon when he finished the job. Randy arrived at 10:15.

    We had a lot of rain last night, so the backyard is mud. Randy opened the outlet, and then he told us that the clog was too far up for him to get to it through the outlet. The only option was going at it from the bottom of the disposer, which meant exposing him to the mold.

    Randy was so hesitant, and he commented about how I need to get the mold taken care of, to which I replied, nearly in tears, "I know, Randy. But Jim was really ill, and we had a doctor's appointment, and I just wanted to get through this Christmas without Jonathan, before we had the kitchen torn apart. I never put potato peels in the disposer, but since the trash bin under the sink is gone, I just got lazy."

    He looked into the cabinet and said that the mold was dry. No leaks (because I've been careful with the leaking faucet to not put it back into its slot to leak, which is cumbersome, and often I spray water everywhere with that leak), and even though the cap and nut were not on the bottom of the disposer, no leaks there. Jim claimed that as his error, because he installed the disposer and also cleared it a few times long ago. Randy said it was amazing that it hadn't leaked.

    I told Randy I would call the mold guy, and Randy said, "They're not plumbers. They won't fix your disposer. They'll give you an estimate on the job, but they don't do plumbing."

    We told Randy that we understood his hesitation. Then Jim said, "These things always seem to happen to us at Christmas. There is always some kind of crisis or problem. How many times, Rose, have we been in the hospital at Christmas with our boys?"

    "Too many," I said sadly. "And this is our first Christmas without Jonathan." Randy had not met Jonathan formally, but he saw Jonathan in his room last year, when he and his dad installed our toilets. They also know our story, because I told their office manager everything about us.

    Randy looked at us both with sympathy, "I'm going out to my truck to get my tools."

    I don't know how many times we thanked Randy, and we chatted with him from the living room, while he worked. I offered him one of our super high powered flu resistant masks, but he said that he had his own. We got to know more about his family, him, his brothers, his Christmas. He and Jim talked about beer, and it turns out Stella is Randy's favorite beer, as it is Jim's. Even though Randy is only 33, Jim had a new friend, a man, to chat with, and he was cheered.

    When I asked Randy, "How much?" he smiled and waved his hand. "How much?"

    He gave us a ridiculously low price, saying he didn't have to replace parts, but we wouldn't have any of it. We gave him what he deserved. He stuck his head in that moldy cabinet, even with a mask, to help us. He didn't abandon us, leave us to some money-grubbing lousy plumber. He showed compassion and caring for us, and he was just delightful company and diffused our stress and tension over the sink. We laughed several times as we chatted. It was healing. How do you put a price on that?

    After the mold removal, we told Randy that we would like for him to install a new disposer, a new sink and a new faucet. Randy smiled, "You know I will be very happy to do that for you. Just let us know when. Meanwhile, have a good Christmas dinner tonight, and Happy New Year, if I don't see you sooner. You two, take care of yourselves."

    Angels Are Among Us!


    POST REPAIR CLEAN UP

    I scrubbed the kitchen up one side and down the other. Comet with bleach in the sink, vinegar for the granite countertops. I cleaned all of the waiting dishes and glasses, placed them in the dishwasher.

    Then, I began cooking: Celebration Roast, basted with a bit of olive oil and a cup of veggie broth, parsley, sage, rosemary, and thyme, surrounded by sweet onion and celery. I sauteed celery and onion for our stuffing mix with veggie broth, and for our gravy, along with fresh mushrooms. Potatoes mashed with butter and coconut milk. We love the savory aroma wafting through our home.

    Jim heaped large portions on our plates, and we were super hungry and finished most of it. It was delicious. I hope that our systems can tolerate it, after being deprived for so long. Jim had about 3/4 glass of red wine, and the first sip, he wasn't impressed, but once he began eating and sipping, he noticed it was very nice. He is satiated.

    We should have at least 2 days of leftovers, which is wonderful, because I am whooped.

    JIM'S PAIN

    Jim has had some intermittent pain in his left groin area for a couple of days. It's sharp and hot, when he sits, or when he tries to get up in his bed. Tonight, I lifted up his legs together to help him into bed, and he said that was pain-free. I don't know what this is, of course, but I'm praying it is a pulled groin muscle.

    He insisted on removing the liner we put in his lower denture to reline it, because it's been uncomfortable. He chose to do that standing at the sink in the bathroom. I brought in our old office chair so he could sit, but then he leaned forward over the sink. He is positioning his body in ways to which it is unaccustomed, so he suffers with pain. I do the same thing, so I understand this pain well.

    He finally got out all of the liner, and I told him to leave it until tomorrow. We can only do so much in one day.

    Jim is also experiencing pain in his chest. He does have a lot of gas, for which he is still taking Tums, but being careful about dosage. It's difficult to discern between gas and tumor pain.

    Tomorrow, I will call radiology to get a date for Jim's CT scan and brain MRI. John texted that his daughter will be available to transport us to see Dr. S on 1/16, as John will be in Chicago for a business conference. John will be available to transport us to Jim's scans as long as they are before 1/13. Nancy texted today to ask when Jim needs his labs drawn. I explained that I have to schedule the scans first, then we need the draw about 3 days prior to the scan. Lots of coordinating going on.

    Long day for us, but our sink is fixed, our kitchen is clean, and we have leftovers. Big Sigh.

    Thank you all for your love, prayers, support, and enduring friendship. 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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  7. #304
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    Hi Rose, I am so glad you were able to have dinner and thank goodness for your plumber! Now, hopefully you can both relax a bit (hoping that Jim's pain abates) before you have to tackle the mould and the medical appointments. We feel in a relaxed mode today - yesterday we had a big family party at Nick's for the juniors hockey game between Canada and the USA. Of course Nat's Alex is from Dayton so there was a good deal of good natured teasing. Canada won but it was close!
    boxing hockey day w Nick fam.jpg Natalie has a bad cold and today I am giving her mint tea with honey and eucalyptus bath salts - hopefully she won't need antibiotics! Hope you both get a good rest today 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. #305
    Distinguished Community Member Jeanie Z's Avatar
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    :( Donna that is a lovely family photo. Thanks for sharing it. Jeanie :)

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  11. #306
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    ((((((Hugs to All)))))) ~

    Donna ~

    What a wonderful family photo! The love, the bond, the understanding between all of you is so visible to me in this photo, Donna. You have all been through so much, and you are so glued together. It's just beautiful, and Jim and I and our Angels send you all of our love.

    I'm so sorry that Natalie has a cold, and I am praying that your loving care and remedies are working well for her. Also, that none of you catch her cold. Isn't that an odd phrase? "Catch a cold." Shall I send you all some masks? I have plenty.

    I watched soccer with Jim today, another Christmas gift to him. It was Wol and Man City, and Jim's first loyalty as a youth was to the Wols. Then he became a Man United fan. I couldn't tell which team he was rooting for today, but Wol won. Jim complained about how much soccer has changed through the decades, about the lousy referees, and so on. Jim is old school.

    So am I, with sports, because we have seen these kinds of changes in our American football, and it is disturbing.

    Tomorrow, our Buckeyes play Clemson to go to the Championship Finals. I'm thinking of getting out all of Jonathan's and Michael's OSU stuff to put in their rooms. They were always excited, when the Buckeyes went the distance, which they did several times.

    I can visualize tomorrow, if Jonathan was still with us here, John coming over, getting Jon out of his bed and into his recliner to watch the game with us in the living room. Oh, how Jonathan would have loved that!

    Everything reminds us of Jonathan's and Michael's physical absence. Holidays are particularly difficult. Obviously, I didn't decorate this year, and that was strange, but I just couldn't do it. Too many other vital things to address. I did put our Christmas placemats on the table for our dinner yesterday. And we did use my grandmother's Depression wine glasses for our meal.

    More "Firsts" ahead. We will get through each one as they arrive.

    Many prayers on their way to you and family, Donna. We love you.

    Jeanie ~

    Thank you for keeping in touch with us. I pray that you have had a restful and relaxing, stress-free day. We love you and pray for you daily.

    OUR UPDATE

    I went to bed at 11, and at midnight, I heard Jim groaning, then firing up his nebulizer for a breathing treatment. I went down to him, and he said that he was okay, and his breathing was stablized. He had slept for about 4 hours. Food, wine, and a Tylenol with Codeine. I told him that he shouldn't take the Codeine with wine. He said, "I had 3/4 glass of wine, Rose. It's too late now. I've taken it."

    He fell asleep after he turned off his nebulizer and slept another 4 hours. He woke up with no pain anywhere, not his groin, not his chest. Cheerful, ready to embrace a beautiful day. I took my walk, came home and started a load of laundry, and after resting for awhile, Jim requested his cereal with fruit for breakfast.

    Birthday on the Horizon

    I spent the day clening pots and pans and the kitchen, doing laundry, and ordering things we need on Amazon. Jim requested a wine guide book and "computer glasses." He said that would take care of him for his birthday.

    Birthday on the Horizon
    Jim's birthday is always a day of celebration and reflection, since that is the day he was officially diagnosed with Stage IV lung cancer in 2017.

    Well, this is 3 years later, and at the time, he was literally at death's door. John and I discussed many times, away from Jim, how ill he was and what we needed to do to prepare.

    Also, this year (2019), Jim was in the Cancer Unit at the hospital on his birthday. So many crisis memories tied to special occasions in our family.

    Scheduling Dilemmas

    I called Radiology this morning again to schedule Jim's CT and brain MRI, left a message, and still no reply. I even turned on our phones, so I wouldn't miss their call. Nothing.

    We may end up cancelling Jim's 1/16 appointment, if we can't work out the blood draw and the scan appointment to fit that tight window. Jim is fine with that. I am fine with it, as long as Jim is.

    I also cannot coordinate the mold removal/repair, until I know what days Jim will have a blood draw, test, and see the doctor.

    This is what was difficult for Randy to comprehend yesterday, when he said I needed to get it done. Let's say that I schedule the mold removal on a day, when Jim is ill, or on a day, when Nancy will be here to draw his blood, or on the day of his tests?

    Randy said, "Well, this isn't good for him either," while pointing to the mold.

    Of course it isn't, but where do I direct my energy right now? It has to be toward getting his scans, blood work, and Dr. S appointment. Once I know that schedule, I can fit in the mold remediation consult. Then I have to schedule their work.

    Was there a time, when life was simple? I cannot remember.

    We send you all of our love and prayers, and we thank you for your love, prayers and continuing support. 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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  13. #307
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    Rose,

    I just read this. Thought you might relate.

    https://www.thatericalper.com/2015/0...DsdNVnMmxVavr0

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  15. #308
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    Hi Rose,
    How was today? Did the buckeyes win? I am thinking of movies that you and Jim might really like. Two of our favourite British soccer movies are Fever Pitch (with Colin Firth - it's about a crazy, mad Arsenal fan) https://www.youtube.com/watch?v=0XYzSnEyANI and also The One and Only Jimmy Grimble about a little boy who dreams of playing for Man City. Both are charming and I think Jim would enjoy them - you as well! I hope you can sort everything out with the tricky balance of all the appointments, Jim's birthday, and the mold removal. We had black mold in the wall in our basement in our old house - the kitchen drain pipe had been leaking slowly inside and we didn't know until we had a renovation done in the basement. The construction team stopped and left and we had to get in the mold removal team. It is essential to leave the house for at least 24 hours when they do the work - you cannot be home for that because it is too dangerous. I hope you can sort this out soon - there are just too many things to worry about! You will be proud of me, Rose, Natalie and Alex are vegetarians and tonight I made a New York times recipe for porcini and cremini mushroom lasagna with a bechamel sauce. I will let you know how it is - it should be good because it has red wine, garlic and cream in it so what's not to like? LOL
    Sending you much love and hope the fates are on your side over the coming days. 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. #309
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    ((((((Donna)))))) ~

    I hope we don't have to be out of our home for 24 hours for the mold removal! We have nowhere to go, unless we go to a hotel. Jim needs all of his meds, supplies, O2 just in case, yes, even for 24 hours. John will have to transport us to/from the hotel. Aaaagggghhhh!

    The Buckeyes game will start in a few minutes. We just watched LSU trample Oklahoma, so LSU will be our opponent, when we win today's game, in the Championship game. LSU looks mighty and very difficult to beat.

    I'll mention the movies to Jim. He watched 4 soccer games in a row today! I watched some with him, but it is so boring to me. Man United won, so Jim is happy.

    Jim and I would love a slice of your lasagna! Sounds delicious!

    Thank you so much for your love and prayers, and as always know that we return them to you ten-fold.

    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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    ((((((callyflower)))))) ~

    Thank you for sharing this with me. Yes, I can relate to every word "the old guy" wrote. Grief does come in waves, and we never know when we're going to be able to ride the wave or drown in it.

    As an "old gal," I have also experienced many losses. None of those losses compare to the grief I experience in losing Michael and Jonathan. Every day, we have to learn to live with it.

    We keep seeing TV ads for a car, with Rudolph getting his red nose from Santa's new car headlights. All I can think of is singing "Rudolph the Red Nose Reindeer" with Jonathan every Christmas. Jonathan sang the last word to every line of the song. Then the tears begin to flow. From a commercial for a car.

    Grief is incredibly stressful, probably the most stressful emotion we experience. But, we all experience it, and we have to find coping tools to help us function through it.

    Thank you again for posting this. I hope you and your family had a lovely Christmas and we wish you a Happy Healthy New Year. You are 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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