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Thread: Jim's Journey

  1. #311
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    ((((((Hugs to All)))))) ~

    Well, the Buckeyes lost last night. We did so well in the first half, and Jim and I were ecstatic. Second half, the Buckeyes lost focus. A very close game until the final seconds. Our great quarterback threw a long pass into the end zone, but our receiver was not there. Three Clemson players were waiting, and one of them caught the ball. That was it. OVER.

    Jim and I agreed that this was a bad play call on the part of OSU's Coach Day. We thought that there was sufficient time for the Buckeyes to just go for first downs instead of the Hail Mary pass. We were disappointed, of course, but it's just a game, and we made it this far, so we're proud of our Buckeyes. Our quarterback played with a bad knee, wearing a brace, and our running back played with an injured ankle. They all did their best, with one exception: an OSU player targeted (helmet to helmet contact) an LSU player. That is when things turned South for OSU. Literally ... South.

    THE EYES HAVE IT!

    Jim has an itchy, swollen eye. I suspect he may have an infection, like conjunctivitis. Jon and Michael had this many times, and I've had it, or something similar, a few times. We start with bathing the eye with a very warm wet washcloth 3 x day. With the first bathing, Jim said he felt a little better, but he had goober coming out of his eye. Well, yeah. That's supposed to happen; that is the point of the soaking.

    Jim had cataract surgery in his left eye in 2015, but that eye seems to be failing him now. We paid extra for the surgery to remove floaters. Floaters are back. His right eye also has a cataract. So, Jim began talking about seeing the ophthalmologist.

    "He'll tell you to have cataract surgery, and then, he'll tell you that they won't touch you, given your cancer," I cautioned.

    Jim said that he didn't want cataract surgery anyway. He just wants a pair of glasses to help him see better. Of course, no glasses are going to help him see better, when he has cataracts.

    Jim's pre-birthday gifts arrived today, including two books on wine. The pocket guide has tiny print. I don't know that either one of us could ever read it, with or without glasses or cataract surgery. But this is what Jim wanted specifically, forgetting that he hasn't looked at a Hugh Johnson's wine guide for 20 years.

    His other gift is "computer" glasses, which reduce the blue ray glare in computers. While I don't think this is Jim's problem, because I do think his vision is failing, he wanted the glasses.

    Tomorrow morning, and possibly several times tomorrow, I will call radiology to schedule Jim's tests. It's frustrating to not be able to get this scheduled, so that I can schedule his lab draw and John's transportation. Holidays mess up everything in the medical world.

    The New Year is approaching rapidly, and I have a thousand different emotional reactions to it.

    We send you all of your love, prayers, and gratitude for your continuing support of us. We love you and pray for your loved ones every day.

    Love & Light,



    Rose
    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. #312
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    Hi Rose, Oh I am sorry that Jim's vision is failing. I wonder whether a nice big magnifying glass would help? I wonder if watching the The Big Fat New Year's Quiz from the BBC would make you both laugh and lift your spirits with New Year's coming. This is what we are going to do this afternoon if the power stays on. We are in the middle of the first huge winter storm here! https://www.youtube.com/watch?v=mIKDT6UpYsw
    Sending love 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. #313
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    Default Waiting and Wandering

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

    Donna ~

    Prayers that you are all safe in the storm! It sounds like a good time to stay inside under comfy blankets. I hope you still have your power. How is Natalie's cold? Healing prayers that she is feeling better and none of you catch her cold.

    JIM - TOP TO BOTTOM

    Eye soaks have worked, as Jim's eye is better today. Right now, he isn't up to going to an ophthalmologist and being tested. He certainly isn't up for cataract surgery.

    He washed from the sink today, a clean up, as he calls it, in lieu of a shower. His main obstacle with showers and clean ups is being cold. He is always cold. He has been wearing his fleece shirts, which I bought for him to wear to appointments, to bed. A t-shirt and a flannel PJ top isn't warm enough.

    Our heater runs 24 hours a day, and it's often 78-79 degrees, and Jim is still cold. Meanwhile, I'm perspiring.

    He has a sheet and two warm blankets on his bed. He also uses a heating pad on top of his legs over the blankets. Yesterday, I noticed the control button blinking on the high setting, and I smelled "burning." I disconnected it. I ordered a new one from Amazon, which was delivered last night!

    His briefs and PJ bottoms are scrunching up on him, when he moves or turns in bed. He is chafing in certain areas. So, I gave him lounge pants, which used to be Jonathan's years ago, before hospital gowns became his attire, and they seem to work a little better.

    A skin inspection revealed the return of a small decubitus ulcer on his right bum cheek. I applied Calmoseptine for now.

    We also restructured his bed. The wedge is no longer suiting him, so it's back to the double back pillow, the boomerang, and two standard sized pillows, with the Laker's neck pillow under his bum.

    The alternating mattress overlay he was using began causing him pain in his left side (tumor/rib). So, we discontinued that, but now I'm wondering whether I might need to look for a different overlay.

    Jim is still tied to the toilet at night, only getting an hour or two of sleep between runs to the throne. If his urine is hot, he knows he's also going to have a BM. Yes, this is what he told me today. Urine and BMs are normal in every other regard.

    He has a lot of gas, which takes us back to the top. He hasn't relined his dentures after cleaning out the initial relining. We need to do this so he can chew properly and doesn't take in so much air when he speaks or sleeps.

    SCHEDULING WOES

    Today, I called Radiology, and Annie answered the phone! She explained that she is usually with patients and away from her desk. I don't know why they don't have an office assistant to schedule appointments.

    I gave her our assortment of needs: after 2 p.m., MRI and CT scan same day/back to back, no Fridays, and the dates that seemed to work with getting the blood draw done prior to the tests.

    First Option:

    MRI at 2:00, wait 45 mins/hour, then CT scan. If Jim can't tolerate the MRI, the wait will be longer. We just sit around in a germy waiting room during flu season.

    Second Option:

    CT scan at 4:00; "walk" across the street to the hospital for a 5:00 brain MRI, in their big, open MRI machine. That would mean that Jim would be in the medical-office provided wheelchair, which is unbearably uncomfortable. He was in pain for days after seeing Dr. K. And I would have to push that horrible chair from the medical offices to the elevator crossing the bridge over the street, down to the parking lot, to the lobby, and then a long trek to radiology in the hospital. I don't think I'm physically up to doing that.

    Third Option:

    After Jim and I discussed these two options, we agreed on my suggestion that we cancel our appointment with Dr. S on 1/16 and rescheduled it, so that we have time to get the best appointment for the tests, which won't wear out all of us.

    I asked John to check his calendar and let me know any "unavailable dates" in January and February.

    I'll call Rad Onc tomorrow to schedule the appointment, then call Annie to make the appointment for the tests.

    Meanwhile, Jim is due for a blood draw and a port flush anyway, so we'll schedule Nancy. By the time we get to the tests, it will probably be another month anyway, and he'll be due or close to due.

    OTHER STRESS

    I won't bore you with details, but for the first time in 2 years, Instacart really got on my nerves. I managed to get most of what I ordered, but the entire process was messed up. The driver told me that "it's like this when it's busy." HA! Instacart received a terse and disappointed report from me today.

    Tomorrow, if our intestines and guts are up to it, I will prepare the Tofurky ham. We did get fresh local asparagus today, although I don't know how our digestive systems might respond to it.

    It's difficult to fathom that this year is ending. The last year we spent with our beloved Jonathan will be over. The depth and intensity of the pain I feel is indescribable. But, I am so occupied with everything else, I don't have time to devote to coping with it. It is just there, lingering, as I put my head down and bluster on to solve "today's problems."

    To everyone, we wish you a blessed New Year, good health, answers and problems easily solved, love, peace, and joy.

    We thank you so much for your love, prayers, and continuing friendship. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    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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  7. #314
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    Default Our New Year's Eve

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

    Hey, guess what I've got?

    A giant, blazing red, neon stress rash all over my face and torso! Now, there's a surprise, eh? Why in the world would I get a stress rash? Hmmm... no stress here.

    I am long overdue for this rash, and I knew something was on the horizon, when I had horrid gas pains and digestive issues for 2 days. That is a precursor to the rash.

    While making breakfast this morning, I burned my wrist on the edge of the skillet. Just not thinking ...

    I have scars on my feet, legs and arms, where ants have bitten me, as I struggle to get them under control and out of our house.

    I'm a dermatologist's dream patient.

    Nothing to do for the rash, except wait it out for 3 days.

    I was going to make our Tofurky ham dinner tonight, but Jim is sleeping, and it's too late for me to get started now. At least we had a good breakfast, per Jim's request: stewed fresh organic tomatoes, two eggs with a soft, but cooked yolk, Tofurky ham slices, cottage fries (I bake a potato, slice it, and saute it in ghee), a slice of toast.

    It is so wonderful to watch him eating and enjoying his meals. I hope he will gain some weight, before he has his scans. His nutritional status is not up to what it needs to be, because his appetite and fullness fluctuate. Yesterday, I ordered some nice looking Fuji apples and a mango, which I'll chop up for a fruit salad for Jim.

    It would be so wonderful, if he would return to drinking his Orgain shakes, but he just feels too full, and he wants actual food, when he's hungry.

    I didn't call to change the appointment with Dr. S today. I figure that it's New Year's Eve, and everyone is either taking the day off, or in a festive non-work mood. I'll try on Thursday.

    I have wept quite a bit the last few days thinking about Jonathan and Michael. I miss them so terribly. If they have been visiting me in my dreams, I am unaware of their presence by the time I wake up. My dreams are so complicated and confusing. I suppose that reflects everything about my life.

    Grief usually gets much worse, before it starts to get better. I know this is the process, and right now, I am heavy into it. Jim tells me that we have to move forward, which I have been doing every day to care for him and his needs. But I need to grieve for Jonathan. It's vital to every aspect of my health. So, I purposely watch YouTube videos with songs to promote my tears and grieving.

    Today, it was "Lo Siento Mi Vida," by Linda Rondstadt. I posted about it in Jingle's New Year's Eve thread in the Emotional Support forum today. CNN is showing a documentary about Linda tomorrow at 9 p.m. Eastern.

    https://www.youtube.com/watch?v=RswU7_PpbOg

    Here is the English translation:

    https://muzikum.eu/en/127-3945-22005...anslation.html

    Linda provided me with so much life affirming, being strong, standing up for yourself, coping with relationship losses, coping with any loss, and celebrating womanhood in her music, that I owe her a debt of gratitude. Even now, she is helping me with my grief.

    It is very difficult to "move forward," when you are stuck in quicksand. So, I have to find my way out of quicksand and onto solid ground. Linda threw me a rope to pull me out today.

    More than anyone probably wants to know ...

    We wish you all a peaceful, joyful, healthy New Year. We send you our love and hold you in our prayers. We thank you so much for walking beside us on our journey, and allowing us to walk beside you on yours.

    Love & Light,



    Rose
    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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  9. #315
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    Very beautiful Rose! I use to listen to a tape I had of a lot of her songs back in the late 80s, when I was grieving so hard. I liked to go from Raleigh, NC to in laws in Ga a total of 515 miles. I listened to her much of the way. Thanks for posting this.

    I am so sorry to know that you have a rash on top of every thing else. It must be miserable.

    I can relate to Jim being cold. I stay cold a lot, especially when it is night and I am trying to sleep. I hope you both get a good night's rest tonight and Jim doesn't have to get up too often.

    Prayers for you both.
    Virginia

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  11. #316
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    Smile

    :) I am praying that you will have an easier New Year. I am glad to see this year left behind. Happy New Year! With love, Jeanie :)

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  13. #317
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    So sorry about the rash Rose! Just wanted to let you know I told my family about Jonathan and Michael as we were celebrating tonight and they told me to tell you they were sad your precious children could not join in on the holiday on earth but we said a prayer for you and your boys about 9 moments into the new year. I hope this is okay and that it gives you some comfort. I hope 2020 is easier for you then 2019 was obviously. Happy New Year dear.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  15. #318
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    Oh my dear Rose, I am so sorry about your rash but I'm not surprised! I remember the last time you had this - I can't recall what particular stress provoked it last time, but I remember your symptoms and that something truly unfathomable was going on at home. It all sounds so exhausting - most of all the grief that you carry as a weight. If only you could stop for a day just to FEEL IT and look at it from every angle. I wish you could do that. I cannot imagine losing Nick and then not being able to honour him by grieving. But you cannot stop to do this because you are needed now and first things first. I just wish it was different for you and Jim.

    Natalie and Alex left yesterday morning for their long two day drive from our house to Madison WI. We had an ice storm the day before but yesterday was just heavy snow and luckily the plow came at 9am so they could out of the driveway and down our steep hill. Nat was still coughing but like you, I know an infection when I see one and she didn't have one, just a bad virus. Luckily none of us got it (esp. Nick)! We just had a very quiet night last night and went to bed about 10:30. We are old fogies! Today we took down the Christmas tree and cleaned everything. It will be another early night tonight - I'm tired after all the cooking and activities. I'm finding that my natural pace has slowed down!

    I hope good karma with instacart and scheduling med appointments begins tomorrow. I will pray. Sending much love and very good wishes for a peaceful and loving 2020. 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. #319
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    Default Thank You & Happy, Healthy New Year To All

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

    Virginia ~

    Thank you so much for your prayers, and you know you are in our prayers too.

    Like you, Linda has seen me through many dark days and crises with her magnificent voice and powerful songs. I'm glad that she accompanied you on your trips to your in-laws. And, I am so very sorry that you lost your husband.

    Every time I hear, "You're No Good," I sing it loud with Linda in reference to my former spouse! And, "When Will I Be Loved?" was my theme song, until I met Jim. I also love the Eagles, but Linda's rendition of "Desparado" is equal to none other. I think even the Eagles agree with that assessment! Of course Glenn Frey and Don Henley were in her first band.

    The rash is hot and itchy, but I've been here so many times before, that I know I just have to deal with it, until it passes. The first time I got the rash was a couple of days after 9/11. By mid-day every day for 3 days, I had to lay down and rest, because I felt exhausted. Of course, that still happens, but then, my life is exhausting all on its own, so I don't know if the rash is a culmination of the stress or just a temporary escape for it. Almost always, it is preceded by intestinal distress for 2 days.

    Being too hot or too cold is miserable, so I understand how you and Jim feel. Even when the furnace is running, and the temperature in our home is 79 degrees, Jim still feels colder, when the temperature outside drops. That might be psychological, I have no idea. There are likely many reasons why Jim is cold, including his low WBC, anemia, and poor circulation, because he doesn't get much exercise, except going to/from the bathroom.

    Jim slept quite a bit yesterday during the day, which is why I cancelled our dinner. In the night, he was up and down with toileting again, and he was having tumor-related pain and groin pain, to the point where he couldn't get out of bed. He didn't call up to me. He just worked through it until I got up at 5:30 a.m. He took another Tylenol with Codeine, so for two days, he's taken it twice in 24 hours. That's an increase for him, particularly since he's had many days without pain.

    I went to bed at 11:00, and probably fell asleep about 11:30, just wiped out. I thought I'd hear the fireworks at midnight, but I didn't! Jim said our neighbor set off fireworks in the street at about 1 a.m. I think he's mistaken, because there is no residue on our street this morning, as I checked for it on my walk. It's difficult to discern where noise is coming from in our neighborhood. I am so grateful that I had some good consecutive hours of sleep.

    How is your UTI? I pray that the antibiotics are working for you. Rest and be good to yourself.

    Jeanie ~

    Thank you so much for your prayers. You are in our prayers too. Prayer is such a wonderful, powerful way to send positive, healing energy. I find peace in prayer as well.

    Letting go of 2019 is difficult for me, because it is our last year with Jonathan. It was a crisis-filled year, with all of Jim's setbacks, and thank you for praying that we'll have a better year in 2020.

    Jim and I watched the Rose Parade this morning. I've watched it every year since I was a child, and I've seen it up close numerous times. When OSU was in the Rose Bowl, and we came home to see our family at Christmas, we went to the parade and the game.

    This year, the parade theme was HOPE, and it was the best parade ever. A Latino woman was the President of the parade, and a Latino woman was the Grand Marshall. Bands from Puerto Rico and Costa Rica performed. The band, Los Lobos from L.A., performed at the end.

    The floats and theme embraced diversity, including one float self-made by Sikhs, and numerous floats featuring disabilities, such as the Shriner's float, and a float as a tribute to Caregivers. One float honored Suffragettes and the 19th Amendment allowing women to vote. Inclusion was highlighted in every aspect of the parade. It was fantastic. I cried through the whole thing.

    I hope your neighborhood is quiet tonight, so that you can get some good sleep too. How are your Shingles? Did you conquer them? Rest and take good care of you.

    funnylegs4 ~

    We are so very honored by your prayers for us and our boys. How lovely and so very caring of you and your family to think of us as the new year turned into "this year." Please thank your family and let them know that we feel their and your love surrounding us, giving us strength and hope. It is so comforting to know that others hold you in prayer. We are not alone. We are never alone, with prayer connecting us.

    And tell your family that we pray for them, as we pray for you.

    Donna ~

    Safe travels for Natalie and Alex and good weather, although I suppose they are home now. I'm so glad that Nat has a simple virus, and not the flu or a bacterial infection. We continue to pray for her healing and that all of you remain healthy too.

    Thank you for your concern for me in my grief process. I spent many years after Michael passed learning about parental grieving from other grieving parents, and from extensive research to help us find coping tools. In fact, I have the makings of a book, just waiting for some time (ha ha ha) to pull it together, of a monthly column I wrote on a parental grieving website for about 3 years.

    So, I do know about the process intimately and what I should be doing to cope with the trauma, stress, and unrelenting pain of Jonathan's passing. I know what I didn't do for too long, after Michael passed. I repressed my grief, because Jonathan became extremely ill. I focused on Jonathan then, so my grief for Michael took a back seat. And I suffered greatly for that, as I was back in the hospital with Jonathan, on the same floor, where Michael passed 14 months before. Two doors down from Michael's room, in fact.

    When I think about losing Jim, I realize that I will have completed my purpose on Earth ~ caring for Jonathan, Michael, and Jim. My hands, arms, and heart will be empty. I will have so much grief to truly process that it may all come crashing down on me. That is why I am taking these diversions to allow myself to grieve, to cry unabashedly, to relieve some of the accumulation of unaddressed grief.

    Yesterday, I remembered my conversation with Dr. S, while Jim was having a treatment. After hearing our story, Dr. S kindly asked me if I would like to talk to their counselor for oncology patients and family members. I smiled, "I don't have time for therapy, Dr. S. I have a full time commitment to Jim now, and he's my priority. Thank you so much for the offer."

    If I had some time for me, what would it be used for? Eye exam and glasses since mine are 13 years old? Dental visit, since it's been 4 years? A check up with our PCP, which I have not had for decades? Having John's niece cut my hair, which is half way down my shrunken back? Seeing an orthopedist? Or having grief therapy?

    I hear you when you say that you've "found that my natural pace has slowed down." I think we age a little faster, because of our stress, and our own ailments. I think that is true for all of us here on BT.

    Now, it is time for me to serve our New Year's Day dinner: Tofurky ham, with an onion and celery veggie broth gravy, stuffing, and fresh local asparagus sauteed in ghee and a dash of olive oil, with sweet onion and vine ripened organic skinned tomatoes, seasoned with Chef's Shake. We had another big breakfast this morning, and I've been on my feet in the kitchen quite a bit today. So no mashed potatoes.

    Jim and I will enjoy our meal, while we watch Linda's documentary. She will inspire us, I know.

    We send our love to you, Jim, Nick, Natalie, Alex, Daisy, Karen, and your loved ones. Thank you for your prayers. We pray for you all every day.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 01-01-2020 at 06:32 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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  19. #320
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    :) Rose thanks for asking my shingles are gone. I am very weak in the legs and hands. I'm hoping the new insurance will cover PT. Prayers continue. With love, Jeanie :)

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