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Thread: Jim's Journey

  1. #21
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    We are still waiting for the blood work results from yesterday's draw. Jim's vitals are excellent, and he's feeling fine.

    Today, Jim ventured into the garage to bring in supplies, like bottled water, paper towels, etc. "What are you doing?" I asked.

    "Helping you. Helping me. Helping."

    It was 96 degrees here today, with a "real feel" of 105 degrees, and we finally had to turn on the air conditioning. Jim said he was okay with it, so we gave it a try, because both of us were sweating. The house thermostat read 86 degrees. The heat can really take the wind out of our sails sometimes.

    John visited for a little while, before his annual summer vacation to the desert. The whole family goes and stays in a condo. John said that if we were up to it, we'd be invited. "You could stay in the condo with the a/c, of course. The views are gorgeous." It's wonderful to know that we are family and welcomed wherever they are.

    Grief for Jonathan is beginning to overtake us, particularly me. Jim has been so wonderful consoling and comforting me. No one knows me better than Jim does or understands all that I've been through with our precious sons. He is hurting too, so together we work through it.

    The tears are beginning to flow for me now, which is an important release. I am crying more than I had been. I was holding it in for Jim, but at some point, I just had to let it all out.

    Sometimes, all it takes is bubbles out of a bottle of dishwashing liquid reminding me of the bubbles I used to blow for Jonathan and Michael, when we were laughing, singing, dancing, living and loving.

    Or a song, a movie, a memory ...

    Okay, millions of things make me cry now.

    I keep reminding myself that this is part of the grief journey, and that the First Year, with all of its Firsts, is excruciating. I have counseled many grieving parents, and I know this. I know how to work through it and to find peace. But, I'm back to the Firsts again, and it's unbelievably difficult.

    This is what propels Jim to fight cancer. He wants to be here for me. He wants to grieve with me and give me strength to carry on without him.

    These are the vows we exchanged, to be together until the end. For Jim, that means that as long as he is here, and he can do anything, he will.

    This morning, he made his breakfast. When I said, "I'm here! I'll make it!", Jim said, "Well, I'm here too, and I am able to make my own cereal. You don't have to wait on me right now. Let me help you."

    Jim isn't receiving any therapy for cancer. But here he is, after all he'd been through earlier in the year, up and about, bringing in supplies, making his own meals, cleaning up in the kitchen, taking out the trash.

    On May 31, John drove us to an appointment with Dr. K, and Jim was on 3 liters of O2. Jim had been through the mill, and Dr. K gave us the "end stage of life" discussion.

    Only 2 weeks later, Jim was off of O2, able to ambulate to/from the bathroom, and just continued to work toward building up his strength.

    To what do we attribute Jim's improvement? God's grace and tender mercies. Our Angels intervening. The prayers and positive energy, which we are receiving from all of you. CBD? All of these and more.

    We just give thanks for every day together.

    When I asked Jim this evening how he was feeling, he laughed, "Aside from peeing constantly thanks to Lasix, I feel great. And if peeing a lot is the worst thing I have to deal with, then I am very thankful. I'm a lucky man."

    Thank you all so much for your love, prayers, and endless support. We love you and pray for all of you every day.

    Love & Light,



    Rose
    Hi Rose,

    I can barely function in 105 degrees myself so I’m very impressed Jim is feeling so good! Yay! My prayers are being answered. So glad your emotions are being released. You NEED to cry. I’m sure Jon,Michael and God are responsible. It’s the only explanation. Sorry the video didn’t help much.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #22
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    Rose, reality is setting in now, but I am so glad you are able to cry. It is a blessing not to have everything locked inside your chest until you think it will burst. I know you still feel that way, but the release of tears does help.

    So proud of Jim too. He really is trying hard to be of help to you.
    Virginia

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  5. #23
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    ((((((Hugs to All)))))) ~

    Thank you funnylegs4 and Virginia ~

    You are so right that the tears need to come out. The book, which I wrote years ago and hope to publish someday for grieving parents, includes a chapter titled, "Tears and Laughter." In my research, I learned how vital both are to releasing hormones, which reduce stress.

    A few nights ago, I just collapsed in Jim's arms and sobbed, heaving sobs, liquid spilling out of my orifices (except for my ears, of course, but if they could, they would weep too). Jim held me and encouraged me, "Get it out. Let it out, honey."

    After about 40 minutes, I began to calm down. As always, Jim was wonderful. Stoic, strong, gentle, comforting, loving. I feel safe in his arms, and I can be who I am with him without any pretense.

    Following that melt down, I was drained of all energy. I had to make dinner, so I pulled myself together, and after we'd eaten, I plopped in Jonathan's recliner, limp and worn out.

    That's one of the main reasons I have avoided crying, because I am trying to have the energy I need to cope, to take care of Jim, and handle everything else.

    But when it comes out, it floods.

    We had another steaming hot day, with high humidity and the promise of rain, which wasn't fulfilled. We waited too long to turn on the a/c today. I baked banana muffins with the leftover bananas and boiled eggs, as sweat poured down me. I just cannot handle the heat in my old age. And the humidity sets off my RA.

    I sent emails with photos today to the management company for our Homeowner's Association, detailing the mess on our greenbelts and common areas. I encountered my friend and neighbor, a former board member, on my walk a few days ago, and we complained about the unkempt areas throughout the community. This includes hazards like over-spray of sprinklers on our sidewalks, eucalyptus bark and leaves on our sidewalks. Many of us, who walk in the morning are elderly. I asked the management supervisor: "What are you waiting for? One of us to slip, fall and break a hip?" I've been complaining about this for decades.

    I received a reply that a work order has been issued for the landscape contractor to get to work. Apparently this is a new contractor. I responded, "The old contractor kept our neighborhood immaculate. This new one is a waste of our money. Expect more emails and photos, if they don't do a good job."

    You know, I don't have time for this, but I've lived here for 42 years, and I'm one of the few original owners left. After my divorce from my former spouse, I was left with no fence, no yards, nothing. I had to work hard and enlist the assistance of friends to turn this house into a home. And I received many threatening letters from our Association about how long it was taking for us to come up to code. I was harassed and feared losing our home.

    With help, we came up to code, and then Jim entered our lives, and we exceeded code by being the first home to change our roof, to install acrylic windows (which Jim did by himself), have an automatic garage door, repaint the exterior. We have the most beautiful side gate in the neighborhood. I've looked at all of them, and ours is the best one.

    Yes, our home is now dilapidated and in desperate need of repair, and no one on our street has issued a complaint, although I know several, who are chomping at the bit to do so.

    So, if we can be harassed about how our home looks, then the Association better take excellent care of our common grounds.

    But, isn't it awful that I have to fight for everything? Why can't people do their jobs?

    Oh, and Michael's waterfall, which has been trying to work for a week or so, needed attention. So this morning, I scooped out a bunch of gunk from the bottom of the pond, and I tapped the top of the motor for the waterfall a couple of times with the scooper. The waterfall started working and continues at a steady stream.

    Thank you for listening and loving us through this entire process. 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. #24
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    Rose, So sorry there's one more battle... You're so right if people would "just do their job" and maybe do it with a little pride and respect it would make so many lives easier. We've had an issue going on for over a year. Our neighbor not following the local buidling codes and storing his business landscaping equiptment on the property (very close to our back yard). Several large trucks and trailers. Diesel trucks that sit idling and smell awful. We wnet through the proper channels and he was ordered to clear the property. He did so BUT still bucks the order and tries to bring things back and we have to go back to the town. Anyway if the town would do their job and just fine him maybe he'll know they mean business!
    So glad the waterfall is working now.
    Crying is so theraputic. I still cry sometimes when I just think about how close we came to losing Kathleen to her strokes. And thinking about all she went through. It's usually when I driving in the car and listening to music and all by myself.
    Prayers always for your family.
    Mary Grace

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  9. #25
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    ((((((Mary Grace)))))) ~

    If your neighbor continues to defy the code, then he should be fined! How many times should he be allowed to get away with this blatant infraction, which is disturbing you, his neighbors? Do you have a local newspaper? Maybe some of you could write letters to the editor about code adherence and treatment for repeated code infractions. Does your city council have monthly meetings? Maybe you and your neighbors could attend the next one together. Take photos of his equipment and where it abuts your property. Be prepared with documentation. Don't let this guy get away with this stuff.

    Fortunately, my photos and emails worked. On my walk this morning, I encountered the same crew with a different boss, and they were all very pleasant to me, as always. The trimming of shrubs has begun.

    I stopped to speak to one of the crew, as he trimmed bushes at the top of a slope. I told him that I was happy to see him doing this. He responded that it really needs it, because everything is overgrown. I thanked him, as I do with every crew worker, when I see them. They work hard for little pay in the heat. By their reactions, I can see that they appreciate my acknowledgement. I suspect very few neighbors communicate with them.

    I also met up with a lovely young couple and their Golden Retriever. They treat me with respect, because I'm old, which is a lovely custom. And their dog is so sweet and comes right up to me, so that I can love on her. I told them, "You made my day! Thank you!"

    As I said to the couple, we would love to have a dog, but, and the young man finished my sentence, "...they are a lot of work." Exactly.

    How is Kathleen and how is your summer going? I'm sure that you're busy, and I hope all of you are well.

    Jim asked for spaghetti for dinner, so I made a big batch of sauce this afternoon. I use Organic Lucini sauce, with no added sugar added, and a variety of sauteed veggies. Jim is needing to eat smaller portions and spreading out his intake through the day, as his belly is still inflated. Sometimes, his bowels slow down too, which suppresses his appetite.

    Thank you for your prayers, and I send you lots of positive energy to get your neighbor to stop violating your town's code.

    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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  11. #26

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    Hi Rose,

    How are you and Jim doing? Hope all is well. Sending prayers up for both of you.

    Marcie

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  13. #27
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Jim's Very Good Results

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

    Marcie ~ Thank you so much for checking in on us and for your prayers. You know ours are with you, Nick, Brian, Jonathan and your family always. Here's our latest update ...


    Jimís blood work results were posted finally on his health portal. The results are very good!

    *WBC: 2.2 (!!YAY!! up from 1.6)

    *RBC: 3.4 (up from 3.2)

    *Hemoglobin: 9.2 (up from 8.8)

    *Hematocrit: 28.3 (up from 26.7)

    Neutrophils: 1.9 (up from 1.0 ~ these are the WBC warriors)

    *Platelets: 61 (down from 69, but still much better than in April at 23)

    Glucose: 145 (now considered high after being normal at 109 with previous blood draw)

    AST (Liver): 46 (up from 44 and still considered high)

    (*Still considered low)

    We are quite pleased with Jimís improvement. Dr. Kís note states: "Labs stable.Ē

    Jim continues to be more mobile and active. Heís eating smaller amounts more frequently to cope with his fullness from the fluid retention and slow bowels. Tomorrow, I will order figs, dates, prunes, and prune juice from Instacart.

    He took a shower the other day, while I was upstairs. When I came down, he was shaving. ďDonít scold me,Ē he said, ďI felt fine and wanted to give you a break.Ē

    The only thing different since he stopped taking Opdivo is that he increased his CBD oil dose to 50 mg. Thatís it. We still eat the same food, although he has cut down on his sugar intake significantly. It must be the CBD.

    The purpura (red spots on skin) come and go on his arms, but the rest of his body is clear. Since there isnít really anything that can be done about them, we just watch them blossom and fade.

    Jim doesnít sleep well at night, getting up to potty frequently. He has a habit of waking up about 3 or 4 a.m., then taking a breathing treatment, or making tea and having half of a Daveís Boominí Berries Bagel. Unfortunately the sound of the breathing treatment or the smell of the toasting bagel wakes me up (seriously, it smells like heís baking muffins in the oven, and those bagels are delicious).

    So, Iím becoming a tad sleep deprived, even though I essentially collapse on Jonís recliner around 10 p.m. and fall asleep for an hour or so. Itís 4 a.m., and thatís the time we think Jonathan passed, so, of course, I canít go back to sleep. Jim can and sometimes does for another hour or so. But, I lay in bed thinking and praying.

    After his breakfast, he typically takes a nap for a few hours. If not, he naps in the afternoon. Itís difficult to get things accomplished around that schedule, like getting Instacart groceries delivered to the front door, right next to Jimís bed. Or vacuuming, which I did today, while he was awake for a few minutes.

    While he sleeps, Iím trying to focus on organizing our office and catching up with filing. In the process, Iím discovering stuff, which is no longer needed, and which needs shredding. I have quite a large amount of documents in this category, some in boxes in the garage. Iím going to gather it all and call a mobile shredding unit to shred it. We have a small home office shredder. I canít manage all of this using it.

    Many of the files and documents Iím finding pertain to Jonathan. I open them and scan the papers, all of my notes, phone calls, letters, forms, and my heart sinks. I remember everything about the issues around all of these documents.

    Today, I removed several huge files from the cabinet, and it was astonishing how much Iíd collected through the years. It is good that I am doing this. It needs to be done, and I have to start somewhere.

    I was looking for pleasant containers in which to place Jimís briefs and his magazines in the bathroom. Iím trying to spruce up this little space now, instead of everything being scattered in bags and the box the briefs came in.

    Jonathan has 2 wicker baskets, with a cotton insert, which were on the floor next to his window and contained suctioning supplies. I havenít touched them since April 12. But yesterday, I got a trash bag and scooped up all of the supplies, cleaned the baskets, and placed them in the bathroom for Jim.

    We didnít have bath mats in there either, as we never used the shower until recently. So, I ordered some nice fluffy absorbent bath mats in ďSpa Blue.Ē Previously, the decor was Southwestern. Now, itís relaxing Spa Blue.

    I also ordered a NY Times Crossword Puzzle book for Jim, as he loves to do crosswords, while he waits for nature to take its course. He is over the moon! And now he has a place to put his books rather than sling them over the towel rack.

    Small things can have a big impact.

    To me, itís acknowledging that Jonathan no longer needs any of these things. Heís in The Light with Michael.

    But Jim is here, and he does need things. Weíve been living like itís temporary for too long. Itís important to make accommodations to meet his needs and give him quality of life.

    We need space, so Jonathanís room has become a repository for stuff, which we canít find a place to put. Itís tiring to keep bringing in supplies from the garage, so weíre using Jonís closet space now to store needed items.

    Jonís closet is still full of his clothes, linens, everything. And, it is quite painful to open the door and walk into his closet. But, reality tells me that Jon would want us to do whatever is easier for us. And I know that Jon would want us to give all of his things to people in need.

    It was about this many months after Michael passed, when we donated many of his supplies. So, my thoughts are going in that direction now for Jonathan. We just have too many things everywhere, and we need to downsize. Itís overwhelming.

    Now you have the long version!

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

    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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  15. #28
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    Rose, I had wondered how things were going with you and Jim. I am glad you posted this. His bloodwork is good and you are making inroads into what you have to. Little baby steps, but you are so right in thinking that Jonathan would want everything to be made as easy for the two of you as possible. He's looking at this and shouting "Yeah, Mom go".
    Virginia

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  17. #29
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    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you so much for validating me. You're so right that Jonathan would be encouraging me to keep going. I know that he and Michael want only the best for Jim and me now, and they are surrounding us with their love and light to help us through our sorrow, our fears, and whatever comes next.

    Yesterday, John visited after his vacation. On his way to the desert, he stopped to pick up the evidence associated with the theft of our mail. I had to give John a document with photos of our driver's licenses, and handwrite permission for John to be our proxy, which Jim and I signed and dated. It was an ordeal, and now it's over.

    I realized that the registration and tags for our van must have also been stolen, so I managed to get that resolved on line after lots of emails to clarify what we needed and why. At the end of all of this, it cost us over $500 to register our van for the next 3 months.

    That also arrived yesterday, so John decided to take off our plate frame, scrape off 20 years of stickers/tags, put on the new one and replace the plate in the frame. I told him that I would do it in the morning, and he wouldn't hear of it. Off we went to the driveway.

    We told John that we were unable to watch a couple of programs, because they were only shown in HD, and our living room TV didn't have an HD cable box. But Jonathan's cable box is HD.

    John said, "Okay, let's get it, and I'll hook it up for you guys out here."

    This is the first time that John has been in Jon's room, since Jon passed. John just went about disconnecting and making sure he had all of the right hook ups, and I said, "Jon would want Jim to have his cable box."

    "Yes. He would. He does. And now, Jim will have it."

    We did all of this during Jim's bathroom break, and when Jim emerged, we had a great new set up for him, offering him more viewing opportunities and a much clearer picture.

    We watched a bit of the Dodgers' pre-game show, as we are all Dodgers' fans, and John doesn't have cable, which has exclusive rights to Dodgers' games.

    We laughed. We had moments of missing Jonathan. We reconnected. John offered to pick up anything we needed and bring it to us. He asked what we were having for dinner, as he was about to go pick up something at a restaurant for his wife, daughter and him. He wanted to bring us food.

    When he left, I turned to Jim, "He just wants to help us and do something, anything for us, when he's here. He's relentless. God Bless John."

    I know that John is missing Jonathan deeply. I miss so much those moments between them, when John would walk in masked, gowned, gloved, and say, "Hey, My Brother! I love that smile, buddy! I've missed you!"

    Jonathan would light up, open his arms, and laugh.

    And then, John would say to me, "Mom, he's going in for the hug! Big Hug! Oh, Jon, you give the best hugs!"

    I cannot adequately describe how beautiful these moments were between them, nor how my heart soared as they embraced, chatted, and loved each other.

    I wish that we could have a memorial service for Jonathan. But I just couldn't do it, without Jim there. He should be there. So many things, which I want and need to do for Jonathan.

    But, I must accept how things are and keep moving forward. Still, my eyes are leaky faucets, over which I have no control.

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

    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. #30
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    Oh, Rose - how heartwarming to read of John's return from holidays and his reunion with you and Jim. It is wonderful that he is so loyal, so loving and so helpful. He is truly an angel from heaven. I am so sorry that your mail was stolen. Sometimes I really wonder what God has in mind when such bad things happen to good people who are in need and have given so much. Why???? I am sorry. But I'm glad that John helped you sort everything out and the TV for Jim is an absolute bonus and of course yet another gift from Jon. Sending much love and thank you so much for the update! 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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