Page 50 of 54 FirstFirst ... 204045464748495051525354 LastLast
Results 491 to 500 of 534

Thread: Jim's Journey

  1. #491
    Distinguished Community Member
    Join Date
    Jan 2009
    Blog Entries


    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    I was so wrapped up in the chicken saga, I missed your posts!

    agate ~

    Thank you for your suggestion.


    A bedside commode is not possible for Jim, as he can no longer bear weight or walk. I fear falling, and I'm not strong enough to lift or help him. He wanted to try one, but when I pointed out the dangers due to his lack of mobility, the idea was kiboshed.

    The problem is that the plumbers have to access Jonathan's closet. Now that Jim is using Jon's room, that will be intrusive for Jim's intimate care needs, like changing his britches frequently after he urinates. Additionally, Jim will be exposed to whatever repairs must be made in the ceiling. I envision a lot of dust from removing and replacing the ceiling dry wall.

    It's impractical in every respect, including the fact that Jim sleeps most of the day.

    funnylegs4 ~


    Thank you for your thoughts on the digestibility of chicken. While that's likely true for folks, who regularly eat chicken, Jim hasn't had chicken or any kind of meat, fish or poultry for 24 years. He also has pre-existing digestive issues, including heartburn, indigestion, and reflux, which he gets after he eats just about anything now.

    I told him this afternoon that if he has any kind of digestive problems with chicken that he will have to give it up immediately. Depending upon his level of discomfort, he'll probably agree with me. All of the meals he loves, I can't make any longer, because he can't tolerate the food. Indian, Mexican, Italian, Greek ~ he can't handle any of them.

    I ordered Branston pickle and Picallily (British condiments) for his sandwiches last year. He was thrilled. Branston and cheese. Picallily and veggie ham. No more.

    This morning, he ate 1 1/2 slices of honey wheat organic bread with orange marmalade. He enjoyed it, but later he had indigestion and took one Tums.

    So, I'm just imagining how his body is going to react to chicken.

    I brought in Orgain today, and he thanked me, but he hasn't opened it yet. I continue to encourage him that this is what he needs to fill in the nutritional gaps and help him get stronger. He agrees and asks me for a cup of tea.

    The Ascites is a huge factor in how much he can manage at a time. With COVID-19, we simply cannot go to the hospital now for drainage.

    I want to get him back on Lasix, but I wanted to start him on Ceftin/Keflex first today. The pharmacist today suggested that he take it with food, and I agreed. But I didn't have it yet, when he ate the toast, and he's been sleeping and wanting a BM all day and not eating.

    Per his request, I microwaved a huge russet potato to slice and saute in ghee. With that he wants an egg over easy. I've been waiting since 10 a.m. to fulfill that request.

    If Dr. K knew what I go through every day trying to feed Jim, he would have more appreciation for how difficult it is. Maybe then he'd stop nagging me about feeding him better and getting more nutrition in him. Unless he gets a G Tube (he won't) or has TPN (he won't), I'm doing all that can be done.


    Thank you for reassuring me that all will not be lost, if our computer says "Adios!" Which laptop did you purchase? So I can use an Apple laptop with my ethernet modem, and get Apple on line to help me install my back up from this computer? Really?! Oh, that's great!

    The window on the left upper corner of the computer reminds me that as of today, it has been 201 days since my last back up. Hmm... I wonder what I've been doing for the last 201 days?

    I've got my notes somewhere, but I can't really remember what to do now. Every day is crisis management for me, and I'm getting really old really quickly.

    I am trying to use the iPad more. When Jim's awake I share YouTube videos, which I know he'll enjoy, and he does. I checked Instacart and our health portal recently on the iPad. I know how to access my email and BrainTalk. So, I have the most important things pretty well figured out!

    Mr. Rogers

    In the scene, when Fred's assistant tells the journalist that Fred loves everyone, "but he loves you more," my tears flowed. Fred embraced the disenfranchised, the victims of discrimination and injustice, the emotionally injured, anyone, who was hurting inside or out, usually both.

    I have met thousands of people on my life's path, but no one compares to Fred Rogers, who had the most loving, compassionate, and honest heart.

    I keep looking around. But there is no one like him now. No one to replace his beauty and humanity.

    Taking Care of Ourselves
    So glad that you are taking care of yourself and working from home. This is a scary time for all of us. We have to do what we have to do.

    I think staying at home is an inconvenience to most people, because it limits their freedom of activities. For diversion and humor, I watch late night talk show hosts home videos on YouTube. Many entertainers are sending out videos from their homes to keep us from going bonkers. The talk show hosts joke about their kids driving them crazy, and their wives going crazy having them at home instead of working.

    And that is after 2 weeks! Oh my goodness! These people are running out of ideas of things to do to entertain their kids after 2 weeks!

    Jim and I have spent every day with the exception of those, when he was hospitalized (and then we were on the phone a hundred times a day), and when he went to his mum's funeral for 5 days in 1999. We've been self isolating for about 10 years.

    Perhaps this is a blessing from the COVID-19 curse: families bonding, learning to love each other, use their imagination, make do with what they have. Pioneers did it. The earliest tribes did it. These are all wealthy people, of course, but they're doing their best to bring it down to our level. As I suspect most people are having the same experience of being cloistered with this families this long.

    My advice to all is:

    Take breaks. Separate for a little "you" time. Whatever that means: taking a shower, a walk, going to another room for a nap or to read, sitting outside on a porch or patio. Exercise any way you can.

    Fill your home with music. Find humor anywhere on the internet or TV, because laughter is healing and releases stress hormones.

    Be creative. Come up with a theme night for your family. Everyone dresses up like ... and you all have XYZ for dinner. Use your imagination or follow the path of many folks, who post videos of their creative ideas.

    Incorporate a ritual to honor those, who are on the front lines fighting to save lives from this virus without proper equipment and protection and for the people, who are struggling with it, in ICU, needing ventilators.

    In Italy, people sing from their balconies. In France, they bang pots and pans at 7 p.m. In Chicago, people sang "Livin' On a Prayer" from their windows and balconies.

    We may not be that dramatic, but we can set aside a special time every day to think about and pray for these people, and everyone around the globe facing this pandemic.

    We are isolated, but we are not alone. And we need to support our troops right now. Everyone from doctors, nurses, EMTs, paramedics to people who deliver our groceries and packages and keep our stores running. They are putting their lives on the line for us, and they deserve our gratitude and respect.

    Oh, and now the CDC is saying that it is a good idea for all of us to wear a mask! Of course! Because we don't know if we have the virus without symptoms or someone else does. Every one of us should be wearing a mask right now!! But where are those masks for all us? Hospital and medical personnel cannot get enough masks. We can't get toilet paper, let alone masks!

    It is very difficult to stay balanced and unafraid during this crisis, when there is an abundance of chaos.

    That's probably contributing to the cabin fever of families worldwide. How long will it last? When can we be free again? Anxiety producing.


    Thank you for your reassurance that Kefelx might be easier for Jim to tolerate than Augmenten.

    I am sure that you know, as well as many others here, that at this stage in Jim's journey, everything is precarious.

    Dr. K said that palliative care/hospice might be next. Well, he's already getting that essentially from me and Nancy.

    Jim refuses morphine or valium or any other drug Nancy has offered him on her last 6 visits. He still wants to schedule a "man cave" date with Nancy's husband, so they can talk about jazz, sports, movies.

    Jonathan's First Angelversary is rapidly approaching now.

    As hard as it is to believe, I do not have words to describe how I am feeling. But, I must repress those feelings to continue to be strong for Jim and see him through this ordeal.

    There really is no other way than to live from day to day.

    We thank you all for your prayers, love and support and we send this back to you ten-fold.

    Be safe, well, and stay home.

    We love you ~

    Love & Light,


    *Virtual Hugs Are Germ-Free!
    Hi Rose,

    No worries! To answer your questions, yes Apple should totally be able to help you. You may have to order a small white attachment to connect the ethernet to the laptop but it can be easily ordered. The white attachment just has a bit that goes into the ethernet cable and makes it have the same size peg that the laptop has a hole for. Had a Macbook Pro first…LOVED that because the GB storage was bigger…then switched to MacBook Air because my store ran out of the Pro model when my MacBook pro went “Adios!" after 7 years. When I got the MacBook Air I called Apple they told me what to click and tada…perfect Time Machine transfer. :)

    Re: Chicken. I’m surprised John could not find organic. All my non health food stores here and when I travel have organic meat, especially chicken. I wonder if Jim’s main issues are the seasonings and the fact that he stops eating at times. Maybe his GI tract has become hypersensitive because he kinda goes without when unwell. Surprised Italian food causes a problem. Can you try pasta etc without acid based ingredients. If he’s like me, it’s the acid in lemon and tomato etc that causes problems.

    Yes, Mr Rogers had the special talent of making everyone feel uniquely loved and truly wanted. He won't be forgotten.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films!

  2. The following 3 users say "thanks"

  3. #492
    Distinguished Community Member
    Join Date
    May 2008


    Fist I hope and pray that everyone here is safe and healthy. Our latest numbers here in NY as of yesterday April 1 were over 83,000. I never ever dreamed it would be that high. A couple of weeks ago my daughter and i were talking and we put out the numbers we thought it would hit for it's highest. I can't believe I said 20,000, she said 60,000 I thought she was crazy ! Now here we are 4 times what I thought and still rising. We are being as careful as possible. My husband works for a branch of the nys legislature so they're still trying to wrap up the budget. He goes in a couple of days a week then comes home and strips down and washes up. My oldest daughter is living with us right now because there's just no reason to be alone. We have not seen my son and his fiancee (she works for a pharmacy) since the first week in March. Kathleen facetimed him and enjoyed that. But she misses him. I go from being calm and ok to being overwhelmed and scared. I just have to live one day at a time which I have always tried to do but sometimes it's hard not to think about how this will all play out and for how long! Just heard that they will be bringing patients from NYC up to our area hospitals! Not sure how I feel about that! I feel bad for other states getting inundated with NY'er fleeing the state.
    Rose, I'm so sorry for the struggles that have been exacberated by all of this. YOu and JIm are always in my prayers. Great ideas for families and I do hope if nothing else it brings them together and helps everyone to appreciate the life and loves that we all have. I hope that we don't go back to our old self and that we learn and grow from these times. Not much has changed for us since I"ve always had to bee the "teacher" "therapist" and at times "Dr." The best advice it to relax and just do what you can. Don't stress over being and doing everything. Take the lead that your kids give and run with it. Be creative.
    Praying for all at this time...
    Mary Grace

  4. The following 4 users say "thanks"

  5. #493
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Blog Entries

    Default We're All Here Together Now

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

    funnylegs4 ~

    Thank you for the computer information. So, I need to get MacBook Air and an ethernet adapter, then call Apple? Is that correct? That sounds too easy!


    Ascites is the biggest factor in Jim's inability to eat large amounts of food. Imagine 17 pounds of fluid, the amount drained from Jim the last time, in your belly pressing on all of your organs.

    Some of his meds likely give him heartburn or indigestion. But foods trigger it too, and acidic food is particularly onerous.

    Regarding organic chicken, not all stores focus on organic food as much as others. The store, where John bought the chicken, is noted for lesser quality products than the 4 stores at which I shop on Instacart (and before, when I was physically shopping). It's also cheaper than other stores, which have better quality products. You get what you pay for. Beyond that, it's the pandemic, so shelves are bare. And organic stuff may go first and be replaced last, so the store can sell off what they have in stock.

    The whole chicken John purchased was $7.99, and just over a pound. The half organic chicken, which I've ordered from our favorite healthy foods store, is nearly 2 pounds at $8.99. And we are assured that the chicken was humanely raised and fed. No antibiotics. No GMO. It's plastered all over the bag, in which it's delivered, unlike the chicken John purchased.

    If Jim is going to take this leap into eating chicken, we have to feel that the chicken is safe for him to eat. Then, we will pray that his digestive system doesn't rebel after 24 years without an animal inside of it.

    It's incredible to even have chicken in our kitchen after all of this time. Jim was a hard and fast vegetarian, and happy with our meals, until recently, as he looks in the past and remembers the food he ate when he was young and healthy. The chicken is actually a nostalgia thing for Jim more than it is for nutrition. He feels deprived of the things he most wants, because of all of his health issues. He just wants what used to be for him now.

    While I do understand his point of view naturally, I also worry about the practical application of meeting his desires and wants now. I don't want him to suffer severe digestive problems, because he needed to remember eating chicken.


    The mattress pump has been iffy for a few days. The mattress is definitely out of alignment, but unless Jim can get out of the bed and allow me to try to pull it over, I can't do anything about it. Jim is experiencing pain and skin breakdown, so this is very important.

    Jim decided that the pump was on the fritz. So, yesterday, I contacted via phone the wonderful company, who rescued us with a new mattress and pump in November 2018, for Jonathan. I received the same caring, excellent service, and a new pump will arrive tomorrow or Friday. It's in a warehouse in California.

    The day, when we changed over Jonathan's mattress, right before Thanksgiving, 2018, is the day John captured the beautiful photos of our precious boy.

    Once I had ordered the pump, I returned to Jim to see how the current pump was working. Fine. Just fine. It still is working. The new pump arrived today. Thankfully. But now we'll have a back up pump, should this one need replacing.


    As with Augmenten, after 3 doses of Ceftin, Jim became quite ill this morning. He began coughing, having reflux, and then vomited. I don’t know what we’re going to do now. We’re stopping the Ceftin. I doubt that Jim can tolerate any of the antibiotics for this UTI.

    He ate well yesterday, after enjoying an egg salad and sauteed potatoes, his Orgain shake, one of Nancy’s tarts (she dropped some off on our doorstep, bless her), applesauce and a cookie.

    He gets relentless hiccups, when these episodes happen. I stopped them today by feeding him applesauce.

    We can’t make any progress with his nutrition, if he’s going to continue having these vomiting episodes.

    He is skin and bones with a giant tummy. He really wants to eat, and he enjoys eating. This is breaking my heart.

    After vomiting, Jim was too weak to pull himself up in the bed. So, I pulled the bed out from the wall and pulled him up with the bottom sheet. He was able to assist a little, which really helped me. The problem is that once we get him set up, he slides down, because the mattress cover is slippery. Same thing with Jonathan. It’s the nature of this kind of mattress.

    John texted today to remind us that he’s available to get us anything we need (if he can find it). I texted back, “If you can find any young, healthy bodies, we’ll take one each. Thank you.”


    When I encounter my friendly neighbors on my walk, we take turns stepping aside to allow the other to pass. Yesterday, a neighbor with a lovely dog, who loves to let me pet her, approached. I smiled at her “dad,” and said, “Oh we have to socially distance, and I can’t pet her! I wish I could!”

    He walked past me and turned around, so we were 6 ft apart. He said, “I know, and I’m sorry. She loves you. Look at her tail!”

    Wagging away, her head tilted as she stared at me, as if she was wondering, “What? Don’t you like me anymore?”


    All of our common areas and amenities have been cordoned off with Caution tape.

    The golf course is empty. The ducks and geese have left.

    The amount of air traffic over us has been reduced significantly, which is the only good thing I can think of right now about this horrid virus.

    Thankfully, we have a very popular and efficient Governor, who has been on top of the situation well before our federal government began responding. Gov. Newsom (former Lt. Gov.) knows about preparedness for wildfires, earthquakes, floods, mudslides.

    I have faith that the Governor and our state legislators are doing all that they can to mitigate the impact of COVID-19 in California. Other states should be following our example.

    From various modeling scenarios, it appears that the virus is congregating on the East Coast and spreading to the West Coast. By getting ahead of the virus, California may be spared the onslaught of cases experienced in other states.

    I am old enough to have lived through some terrifying times in our world and our country. COVID-19 is the most terrifying among all of them.

    As I endeavor to cope with Jonathan’s upcoming First Angelversary on Easter, grieving for him and for Michael, and facing the loss of my beloved husband, I just have to ask God, “Why now?”

    I say that quite often it seems. “Why do we have mold now? Why is the toilet leaking now? Why this why that why why why?”

    So many of our dear friends are battling serious health issues; many are Seniors. The stress of COVID-19 is exacerbating their conditions, and no one wants to get near a hospital now, even if they really need to be there for a non-virus issue.

    For them, I also ask, “Why now?”

    Everybody’s plate is full to overflowing with problems. Now, we fear the deathly infliction of a virus from bats.

    We can’t physically touch each other with a hand on the shoulder or a hug for support and comfort. During all of the tragedies in my lifetime, both personal and global, this has never been the case. Never.

    We need each other so much now, but we have to be content with external support and comfort. The physical touch means so very much in care giving. People are dying alone from this virus, because their family and loved ones aren’t allowed near them in ICU.


    I’ll leave you with this, and I apologize for the length, but it comprises 2 days of composing.

    When I mentioned to Jim that I needed to take out the trash bins for tomorrow’s pick up, he moaned, “You have to do that every week. You have to do everything. I wish that I could help you. And then you have to do everything for me. I’m so sorry.”

    Holding back tears, I replied, “You’re here. I’m not alone. Before you arrived in our lives, I did all of these things on my own as well as taking care of Jonathan and Michael. Then, you were here, and you did these and many more things. You were everything to our boys and to me, and nothing stopped you from working for our benefit. You’re here. I’m not alone.”

    “I don’t want you to be alone,” Jim whispered.

    “I know, but I’m preparing for it, and I’ll be fine. It will be painful. But I know what I have to do, and it will be done. But I will be alone, without you, without our boys. So, as long as you are still here with me, I am not alone. We still have so much between us. So much to talk about. Whenever you are ready, I’ll be ready.”

    Then he shared again with me how much he feels Jonathan’s presence, which of course makes tremendous sense, since Jim is sleeping on the bed, where Jonathan passed, and Jim performed CPR on Jonathan. The other night, Jim woke up and asked me, “Is he still over there?” pointing to the window. “Who?” I asked. Jim replied, “Never mind, I’m just waking up.”

    Of course, he was seeing Jonathan.

    I told Jim that I am so disappointed that Jonathan doesn’t visit me in my dreams. I feel him all around me, but I just want to hold him in my dreams. Michael has been appearing periodically in my dreams. But not in Jim’s dreams.

    So, I surmise that Michael is watching over me, and Jonathan is watching over Jim. Michael and I have nearly 17 years of connecting spiritually. After Michael passed, Jim focused on Jonathan, so it’s natural that they would reach out to us this way.

    It isn’t that we don’t both feel their presence all of the time, of course. But we seem to have selective dreams and dream-like contact with our boys.

    There must be a reason for that.


    Be safe. Be well. Be good to yourself. Send prayers around the World.

    Love & Light,


    *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.

  6. The following 6 users say "thanks"

  7. #494
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Blog Entries

    Question Today, Yesterday, And Tommorow

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

    Mary Grace ~

    NY’s number of COVID-19 cases is astounding and frightening. I know you must feel overwhelmed frequently, as I do. I’m just praying that California is ahead of the curve, as we started lock down about 3 weeks ago. For the most part, I see people adhering to the stay at home guidelines. When I drive to pick up Jim’s meds, the absence of traffic is noticeable.

    I wish your husband could telecommute. Apparently, the new thing is Zoom on the internet, which allows people to connect with multiple people at one time. Is your husband wearing a mask at work? I highly recommend it, as does the CDC now.

    Like you, I have anxiety about how long the pandemic will last. California’s schools are closed, at least until September, and students are being taught on line by their teachers.

    I was watching the local news today, and the bottom chryon was running a list of all of the places throughout Southern California, which are “closed until further notice.” I’m thinking of all of those people, who work at these places, like museums, art galleries, amusement parks, beaches, restaurants, hotels, who are out of work now. Also, no tourist dollars coming in.

    This is the worst crisis most of us living on the planet have ever experienced. My 97 year old friend says that this is worse than WWII.

    No wonder everyone is on edge, afraid, fearful, and feeling cooped up in their homes. As you said, we just have to take each day as it comes. I start my bedtime prayers with: “Thank you for today, yesterday, and tomorrow.”

    We send you and your family our love and virtual hugs to remain strong for the duration. Just keep loving each other through it.


    Nancy came today to recertify Jim for her services, which was handy for many reasons.

    When I opened the front door, she was wearing a mask and bright green goggles! We laughed. She said the agency procured these for their nurses and aides. At long last! Nothing like closing the barn door after the horses have left.

    She looked at Jim’s vitals, which I always take prior to her visits and jot on notepaper for her to input into the computer later. SATS: 93 HR: 89 Temp: 98.2 BP: 81/60 Yep. She asked me what was going on, and I filled her in.

    When she walked in, Jim laughed at her gear. Nancy had her arms out, walking toward him like a monster. It’s Halloween in April.

    First, she assessed him, and she commented that he looks better than he did the last time. His color is good.

    She surmised that he could have low sodium levels and recommended that Jim drink BodyArmor. That brought a smile to his face. He loves that sugary stuff. Add salt to his food, which I did today. Tea is good too.

    Coccyx Wound

    Jim has been complaining of pain on his coccyx, where we’ve been treating a wound for years. It’s difficult for Jim to turn over fully, so that I can clean it and change the dressing. And the wound is supposed to stay covered for as long as possible, because changing it too often disturbs the cell regeneration.

    Nancy helped me so much moving Jim in bed, so that he could lie on his side and give us full access. The wound is Stage 2. She brought in a powder for the center, then applied Calmoseptine in a circle around it. We placed a 6 x 6 Optifoam pad on it. I will check it on Monday or Tuesday for a dressing change.

    She helped me put a clean pad under Jim, which we used to lift him up in bed. She is amazingly strong! Jim helped too by lifting his rear.

    We applied Aspercreme to his lower back and under his right knee.

    BP Recheck

    After tossing him about, Nancy took his BP the old fashioned way, not on our machine. She got 91/61. She tried on the machine, and it was a bit lower. I asked her to use her number, or Dr. K might freak and want Jim to go to the hospital.

    After having some BodyArmor, an egg and fried potatoes, as well as a yogurt this morning, Jim is feeling pretty good.

    I will recheck his BP a few times this evening.


    Nancy thought we should try it again, with Jim eating every time he takes it. She said, “Start off with just one a day, and see how that goes.”

    She agreed with me/us that Jim should be getting 3 breathing treatments a day, even if he doesn’t think he needs one. She suggested that both the Augmenten and the Ceftin treat respiratory illnesses too, so that may be why he spews up more mucous when taking them.

    We have to keep him as upright as possible in the bed, which is no easy task for him or me. Jon stayed up in the bed better than Jim does, because Jim moves around in bed. Jon didn’t.

    So, we’ll give Ceftin another try, as she suggested.

    The problem occurs when any progress we make with his nutrition is obliterated by vomiting and loss of appetite. He can’t afford to lose any more weight.


    Jim found a tribute to Garth Brooks for the Gershwin Award on TV. In between taking care of Jim and preparing for Nancy’s visit, I watched some of it with Jim.

    Jim walked down the aisle to “If Tomorrow Never Comes.”

    The music accompanying the slide show of Michael at his celebration was “The River.”

    When I reminded Nancy that Jon’s first Angelversary is on Easter, I began to cry. She was washing her hands wearing her “monster suit.”

    “You’ve got too much, Rose,” she said tearing up too. “I don’t know how you do it, but I’m here to help you.”

    Meanwhile, she and her husband are distancing from their two daughters and missing their baby granddaughter. They all live close by, but they can’t interact. "At least we can FaceTime,” she sighed.

    Then, she told me about her daughter, who ran out of toilet paper, came to the end of her driveway to ask her for some, and she threw 3 rolls at her daughter.

    We countered the tears with a good laugh.

    I shall leave you all with this incredible song by the brilliant Jackson Browne. So relevant to today. “A Little Soon To Say.”

    We love you all and pray for you and your loved ones. We thank you for your prayers, love and support of us. We’re not alone. You’re not alone.

    Be Safe. Be Well.

    God Bless You. God Bless Us All.

    Send Prayers Around the World!

    Love & Light,


    *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.

  8. The following 4 users say "thanks"

  9. #495
    Distinguished Community Member
    Join Date
    Oct 2006
    Blog Entries


    My dear Rose,
    Thank you so much for the updates! I have been reading but a little bit out of my mind lately so have been unable to respond in my usual way. My brother in law finally (yesterday) heard from the surgeon and we have a plan. The hospital will reopen after a 2 week covid cleanse and the brain surgery will take place the week after next. The surgeon said they can get the tumor via the nasal cavity rather than a craniotomy which came as a great relief. They won't be able to get all of it but whatever they leave is not malignant and slow growing. Neighbours are stepping up to help my sister and we all feel very relieved that we have a plan that does not involve dying at home, abandoned by the health care system which is frankly what we were all feeling. Covid is playing total havoc with our normally very good health care system. Anyway, I am so so glad that you have your dear Nancy to help you (I wish I could be Nancy for my sister!!!). For Nancy, for you and all the other helpers, I posted this today on my blog. Love and prayers always, Donna xo
    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:

  10. The following 3 users say "thanks"

  11. #496
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Blog Entries


    ((((((Donna))))))* ~

    In light of the pandemic chaos, this is good news. In "normal" times, your brother in law wouldn't have to wait. These, of course, are not normal times. Will he be at home, while he waits for surgery? Is he able to be with his family?

    It must be so frustrating for you to be in isolation and unable to help or just be present for your sister and family. Even though you can't be together, I am sure that your love for each other is shining through the COVID cloud.

    If you could have the goggles, gown, and mask that Nancy has, you could be there. I wondered whether any of our neighbors saw her walking up to our front door from the street. I could imagine someone being afraid that Jim or I have COVID-19 as a reason for her attire.

    What a fantastic poem! Thank you for posting it. It speaks to all of our health care workers now, all of the delivery people, everyone, who is working to help us through this horrible crisis. They are carrying our water, sometimes in their bare hands without a pail.

    The medical systems and care in every country contending with COVID-19 are in upheaval. South Korea and Iceland seem to have had a good handle on it, responding quickly. The countries, who didn't respond quickly, are the ones seeing the increases in COVID cases.

    A giant mistake, in my opinion, occurred early on, when the CDC declared that masks weren't necessary, unless you are infected. Nancy, Jim and I discussed the absurdity of that at the time. Turns out we were right.

    Why do I make everyone, who enters our home wear a mask, gown and gloves? Why do Jim and I wear masks, whenever we are in any kind of medical setting?

    Because most viruses behave the same way. You feel fine in the morning, and that night you have a fever or other symptoms. Anyone, who has ever had any kind of flu or a cold knows that it comes on out of nowhere.

    I don't know how many times our friends have said to us, "I feel fine. I don't have anything."

    My answer is always, "You don't know whether you do. You don't now, and that's great. But tomorrow morning, you might wake up with a sore throat, or diarrhea, or the flu."

    After a friend flew in to stay with us during Christmas in the late 90s, she got the flu on her last day. Jim drove her to the airport. He came down with the flu. She was fine during her visit. Three days later, sick, feverish.

    That's when we established a rule of no visitors, who've been on an airplane, unless they've been here for a week, before they see us. Planes are germ factories. So are cruise ships. Last year, a dear friend wanted to visit. She had just returned from a cruise. We said we'd have to wait, just in case. Well, she got really sick. That's what happens when a bunch of people are crammed into close quarters for long periods.

    It's not rocket science. I figured this out a long time ago. So, I can't understand why the CDC didn't tell all of us to wear masks at the first notion of an outbreak of this pandemic. It's common sense, for crying out loud. If someone, even a healthy person, coughs or sneezes on you, you're protected from the droplets and anything air borne from that event.

    The EMTs and some nurses have asked Jim and me about our masks, "Are those to protect you from us, or us from you?" And that was before COVID-19.

    We always answer, "Us from You. No offense."

    I used to wear a mask and gloves at the door greeting Instacart shoppers, thanking them profusely for their help. I always explained that "I have vulnerable family members, and I can't risk catching anything from anyone. No offense." None ever taken. They can see that I'm old, and we are organic vegetarians (until tomorrow's chicken arrives). Many of the shoppers were former Respiratory Therapists, surprisingly. They just had to leave the field from the stress. At least one of them remembered Jon and Michael.

    So, as we try to cope with this pandemic, I have to curb my anger about the poor information we have received, particularly about something as simple as face masks for everyone. Or any kind of face cover over your nose and mouth, like a scarf, which I suggested to Virginia, before it was suggested in a recent press conference. And wear glasses, wear your sunglasses, if they're the only kind you have. Protect your eyes too.

    Gloves. Any kind of gloves. For everything you touch, which others have touched. We should wash our hands before we put on gloves and after we remove them. But the danger of exposure is far less, if we are wearing disposable gloves.

    I learned all of this from countless ICU experiences with Jonathan and Michael. Before you enter the room, wash your hands, get a gown out of the bin in the hallway in front of the room, grab some gloves, and a mask. Remove gown, mask, gloves, wash your hands, before leaving the room. Stand in the hallway, 6 feet away, wave goodbye and blow kisses and "I love yous."

    Now, the COVID-19 patients in ICU or any hospital unit cannot have visitors. Their loved ones are prevented from seeing them or saying goodbye to them, before they pass. Nancy told us that no visitors are allowed in our hospital now, which means that if Jim needed to go to the hospital for any reason, I could not accompany him.

    I can't even conceive of how unbearable that would be for both of us. Please pray with us that we never have to endure that tragedy. Thank you all.

    This didn't have to happen. If China had listened to the doctor, who alerted the world to this virus, instead of punishing him, and then he died of COVID-19, perhaps this pandemic could have been contained. And if every country in the world, with intelligence networks, who were alerted to this potential pandemic had acted with the urgency it required, we wouldn't be here now.

    But, here we are.

    Like the levees in New Orleans during Katrina, the damage is done.

    All we can do is listen to the experts and pray that we hear the truth. (I'm looking at you CDC.)

    Please, everyone, we love you dearly. Protect yourselves and your loved ones. Stay home, as aggravating as that might become. Clean everything delivered to your door. Throw out the cardboard boxes and plastic, as they can continue to hold the virus for a day or more.

    Off soap box ...


    Coughing all night and the majority of today. He took Ceftin/Keflex this morning with applesauce, followed by an egg and frozen organic french fries. No nausea so far. Even with coughing.

    Stepped up the breathing treatments to every 4 hours. Cough syrup, which helped him to sleep for about 2 hours.

    Too weak to pull himself up in the bed, so I unlocked the brakes, pulled the bed away from the wall so I could get behind it, and used the bottom sheet to pull Jim up in the bed.

    As the poem says, Donna, we do what we have to do.

    Our prayers are on the way for your brother in law, sister and all of your beautiful family. Stay strong and keep the faith. I know you will.

    Love and healing prayers to all, and thank you for your prayers, love and support of our family.

    Every day is a new beginning ~

    Love & Light,


    *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.

  12. The following 5 users say "thanks"

  13. #497
    Distinguished Community Member
    Join Date
    Oct 2006
    Blog Entries


    Thank you so much for your prayers and your wisdom, Rose! I am sorry that Jim has been coughing - 2 hours sleep is hardly enough, but we are all thankful for small mercies. I talked to my brother in law yesterday over the phone and he was in good spirits, cracking jokes even about brain tumours. I sent a package of soaps and candles from a lovely farm shop to my sister's house and they wiped everything and will enjoy them to help relax. It feels like the least I can do. Nicholas' helper sent us this link (they're watching this and others today) and I thought Jim might enjoy it - it's a virtual reality tour of London! Enjoy and hope today is a good day, given the givens. Lots of love, Donna xoxo
    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:

  14. The following 2 users say "thanks"

  15. #498
    Distinguished Community Member Jeanie Z's Avatar
    Join Date
    Dec 2006
    Blog Entries


    :) I enjoyed that tour. Thanks Donna. Jeanie :)

  16. The following user says "thanks"

  17. #499
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Blog Entries

    Default A Day In The Life ...

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

    Donna ~

    I'm so happy that you had a chance to chat with your brother in law and that he has a positive attitude. Just the thought of brain surgery is scary to anyone, so my prayers are really stepped up for him and all of you. The waiting can also induce anxiety. I hope that continuing contact will be possible for all of you, from a distance, to help you cope through this situation.

    You are such a wonderful gift giver! I know your sister loves the soap and candles. Very thoughtful, soothing, and comforting gift.

    Thank you for the video tour of London. Like Jeanie, I really enjoyed it, having never been there. Jim hasn't seen it yet, as we've been busy with other things. But I told him about it, and he will watch it on the iPad eventually.

    I watched the Queen address the nation on a YouTube video. She was compassionate and caring, and she praised the people for staying inside and all of the health care workers on the front line. I had tears. Here is the video:

    Boris Johnson is hospitalized with COVID-19. It's hitting Britain pretty hard. The Brits are stoic and will keep a stiff upper lip through it all.

    More videos:

    James Corden airs a demonstration of the domino effect of COVID-19 with and without social isolation:

    Dr. Jeff VanWingen, who showed us how to sanitize our groceries, now shows us how to safely handle delivered packages, food, and mail:

    All of the late night talk show hosts are doing their shows from their homes 5 days a week. They have guests remotely. They introduce their homes and family to us. Jimmy Fallon and his wife, Nancy, take walks around their neighborhood in East Hampton. The mansions in the background are breathtaking.

    And everyone of them asks their guests to name a charity and explain the work it does. Fundraising through late night talk show hosts during a pandemic using technology and the internet. This is 2020. The future has arrived.

    There is plenty of humor, plenty of seriousness, plenty of celebrities without make up or fancy outfits sitting in their homes isolating like all of us. Their gift is to entertain us during this crisis. I highly recommend checking out all of them on YouTube. There is a plethora of entertainment there from about March 30th to now.

    While Jim slept, I watched Keith Urban with his wife Nicole Kidman perform from their home studio and his warehouse. If you like Keith, he's just like your neighbor on these videos, bringing love and music to your life. He has a new album and one of his new songs, "When God Whispered Your Name," is definitely a chart topper.

    Jon Bon Jovi, who has 3 restaurants to help curb hunger, called Soul Kitchen, wrote a new song for this crisis, "If you can't do what you do, do what you can." Then he asked people to send him a verse, and he is playing their verses back to them on video.

    Famous people doing caring things to help all of us endure the pandemic. We need their art, their humor, their off the stage realness.


    He is sleeping quite a bit, but we're very busy, when he's awake.

    Last night the sleep hit the fan for both of us. I nodded off around 8:30 on Jon's chairbed, while we were watching an old movie. Jim followed shortly thereafter. We both semi-woke at the same time and mumbled something to each other. At one point, I thought Jim was awake, so I asked if he was hungry. He was sound asleep.

    I woke up at 1:00 a.m.! Jim was still sleeping. I stayed up until 2 a.m., and he was still sleeping. So, I went to bed on the futon nest. We have the phone, so he can page me when he wakes.

    This morning, he told me that he did wake up for a short period, saw I was gone, and tried to scoot over in the bed, consequently tweaking his back causing pain. I applied Aspercreme when he told me this and asked him not to try to do that again without my assistance.

    The first thing Jim said to me was, "I went somewhere last night, didn't I?"

    "No, honey. You've been right here all night. If you went somewhere, I would have gone with you. You must have been dreaming."

    And, I had a terrifying, detailed dream on the futon nest, where Jim and I were in some kind of ward or unit. I was only wearing a towel, my clothes, purse, phone were gone. As I frantically tried to track them down, I was met with one obstacle after another. When I returned to the room, Jim was gone. Then I ran around asking people, "What happened to my husband?" I was taking elevators, running upstairs, downstairs, in search of Jim and my clothes. I ran outside, but I couldn't find the parking lot, where someone had told me they'd meet me and give me a ride home. When I got there, they were driving away, ignoring me.

    So, maybe Jim and I did go somewhere last night during our sleep fest.


    First thing, I pulled up Jim in the bed using his bottom sheet, because he hurt his back and doesn't have the strength to do it on his own. It was a bit more difficult today than yesterday, but we got him up there.

    We are expecting a BM any minute now, because he keeps feeling the urge, but doesn't produce.

    Our Sunday Breakfast: Pancakes! Yay! He had a good sized pancake with a raisin smiley face, mixed berry applesauce, and a bit of organic maple syrup.

    I was able to assist him moving sideways on the bed by lifting one side of his underpad as he lifts his hips. This gives his hips some support and worked today. I don't know why I didn't think of it sooner.

    He took his Ceftin/Keflex after the pancakes. So far, he's tolerating it pretty well. We're on day two of one tablet a day, instead of two. No blood in his urine, no pain when he pees. Color and output is good.


    Expecting a delivery by this evening for a week since I placed the order, I was surprised and pleased to see that one of my previous shoppers was assigned to my order and delivered it by 1:30 this afternoon. She got everything she could in the amounts I requested, and even added maple syrup to my order via our messaging.

    I was very surprised at the availability of my items. But then, this is a healthy small chain, which attracts vegans, vegetarians, and folks, who like organic foods. They don't carry toilet paper. But they have every kind of vitamin, and over the counter healthy remedy you can imagine. Small store, with a friendly, helpful staff.

    She left the bags in front of our door on our porch. I was in the middle of tending to Jim, so they had to wait out there for a few minutes. Jim was afraid they'd get stolen.

    I could tell by the number of bags that they were heavy, even though I asked her to ask them to make them light for me. They were heavy and I hauled them into the kitchen, set them on the floor, one bag at a time.

    I used Lysol wipes on the groceries, because I can't find isopropyl alcohol anywhere. As I wiped, I ran back and forth from the kitchen to Jim to showcase the groceries just for him.

    Oatmilk yogurt, to which I will add frozen mango, pineapple and blueberries. A probiotic non dairy, and he loves the taste of oatmilk.

    CHICKEN! Sliced breasts in deli packs, which I will warm up and add veggie gravy. Or put in a sandwich. We will begin with a very small portion to see if his digestive system can tolerate it. If not, John and his family will have 3 different kinds of deli roasted chicken breast packages.

    The Veggie Meat Jim Likes: Tofurkey smoked ham deli; Yves hot dogs.

    Cream cheese. Jim saw a commercial for cream cheese and asked me whether I like it. In 28 years, we have NEVER had cream cheese in our home, because I don't like it, and he's never asked for it. But he got some today. Again, I warned him that this is dairy, and dairy congests him. He tried to rationalize it. But if he has a small amount, and he gets clogged, well, John and family will get this too.

    Peas and Carrots ~ because as a Brit, this is vegetables on the side. It's the staple side veggies at our local British pub.

    Unsalted kettle potato chips, pita chips, and tortilla chips. He can have a few chips with his sandwiches. Pita chips with hummus.

    Organic cranberry and blueberry juice, organic pure cranberry juice (for UTI, per Nancy's suggestion), applesauce with peaches, applesauce with apricots, applesauce with cinnamon.

    And yes, I carried all of this to Jim, before I put it away. One batch at a time.

    Fresh Beets ~ Jim loves beets, and beets are quite nutritious. Our shopper found a stunning bunch of beets with greens attached. We don't eat the greens, but it's nice to see beets in their true form.

    I am so grateful to Theresa, who shopped for us today, and I made sure I thanked her continuously as she shopped. She knows me, so she knows our situation, and she wanted to do all that she could for us today. God Bless Theresa and keep her safe.

    While we're okay with toilet paper, because Jim doesn't use it any longer, I can't find kleenex anywhere. I ordered two boxes of travel packages of Kleenex on Amazon. Opened the package in the garage, wiped down the boxes with Lysol wipes, left them to air out in the garage.

    I also ordered and received from Amazon today 600 filters for my Mr. Coffee. That should last me through the pandemic! I drink decaf, and that's almost 2 years of one pot a day. Also ball point pens. We have a box, probably 10 or more years old of pens, but they've all dried out. Now, we have 60 pens in a box, which will do the same thing over time.

    Did the same thing with those items, cleaning with Lysol wipe, wearing gloves, tossing the boxes immediately.

    Warding off COVID-19 is exhausting, but it is so necessary. I showed Jim all of the food we received today, but I didn't let him touch them. I was wearing gloves and had a Lysol wipe in my hand.

    Jim is still sleeping, so we'll see what he wants for dinner, when he wakes up. I'm sure I'll be pulling him up in the bed again a few more times before the night is over or dawn breaks.

    We love you all, pray for you to be safe and healthy, and ask God to watch over all of his children on Planet Earth.

    Send prayers around the world!

    Love & Light,


    *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.

  18. The following 4 users say "thanks"

  19. #500
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Blog Entries

    Default Lean On Me

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

    We are on BM Watch. I can't count the number of times today, when Jim has said he was having a BM, only to be disappointed. I have to remove his sheet, 3 blankets, his heating pad, and the sheet over his feet to access him. Then after the false alarm, I carry it all back over to the bed from the chairbed to put on him again.

    I had to pull him up in the bed with the bottom sheet twice. The second time it was only to get him a smidgen further, after he had pushed himself up using his arms.

    He's been sleeping on and off all day, because he's awake all night. He's only eaten some apple/peach sauce to take his Keflex. After all of that commotion about chicken, he hasn't mentioned it once! Now, he's constipated, so he isn't hungry and wants to get rid of this waste to make room for food.

    He just had another round of MOM, which we hope will get him moving.


    I placed an order this morning with a different store, thinking it would be another week, before delivery. To my surprise, I received the option of Today within 5 hours!

    Giving it the old college try, I ordered kleenex, toilet paper, and napkins. All out of stock.

    The shopper actually started an hour after I placed my order and was here about noon! Also a surprise. She was able to get many of the grocery items I ordered, which was great.

    She left the bags on the front porch, but she tarried awhile. I went upstairs to check the order on the computer, and she had messaged me. I ordered some beer to give to John, when he visits next time to pick up some cases of water. She needed my ID.

    So, I donned my biomask, gloves and walked out to her car at the end of our driveway. I stood in the middle of the driveway, at least 6 ft away from her car. I told her that I thought Instacart had changed the policy on requiring signatures for alcohol delivery. She said, "It changes every day. But I can't put your order through on my app, without your ID. If you could hold up the back of your ID for the bar code, then I'll take a picture of it with my phone from the window. And I'm putting on my mask right now."

    I moved slightly closer, and she got the picture. Then I moved back to the middle of the driveway.

    She said that the store will have the paper goods in stock tomorrow morning at 7 a.m. She lives near us and said that she'd be glad to pick up everything I need and bring it to me. "You can just pay me directly for the items. No tip needed."

    She had left her card in my bags. She told me that she has worked in hospice, had a massage therapy business, which she had to end due to the virus, so she started working for Instacart. "I have to help people, as well as provide for my family. And I know it's hard for everyone right now, but especially for folks, who are seniors or are ill."

    I told her that Jim has cancer, and I'm his careprovider. "That's why I look like this." I haven't brushed my hair for a couple of days, and I have to wear it in a ponytail, because it is so long. No make up. T shirt, baggy crops, because I haven't had a chance to wash my clothes in over a week. Showers are intermittent, only when I can't stand it any longer, because the upstairs shower head is leaking incessantly. As is the toilet, which I no longer use. You could pack the bags under my eyes and take a trip around the world. Yeah. Pretty unkempt and pathetic, eh?

    She began crying, still wearing her mask. "I'm so sorry. You're going through such a hard time. I know. I'll be happy to help you with your grocery needs. Just let me know." She was really crying.

    I told her to be safe, as I thanked her for her kindness and for her service to all of us, who need groceries and other items. I assured her that I do have several people, who help us.

    Unfortunately, we never know who we can trust these days. She sees our neighborhood, and she might see targets to take advantage. However, the vibe she gave me was sincere. She isn't the first shopper, who has cried after chatting with me at the door (mask and gloves on before the virus). But, I won't call her. I will ask John, who is out in the stores everyday, when we actually need to have these paper supplies.

    Up to the minute, that is us. We just keep keepin' on.

    I will leave you with this ~

    In loving memory of the great Bill Withers, who passed at the age of 81 a couple of days ago, his iconic song of agape love, "Lean On Me":

    We all need somebody to lean on.

    Sending prayers to all to be safe, healthy, and as stress-free as possible in these unprecedented times.

    Jim and I love you and pray for you and your loved ones, and for everyone around the world.

    Love & Light,


    *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.

  20. The following 4 users say "thanks"

Page 50 of 54 FirstFirst ... 204045464748495051525354 LastLast

Similar Threads

  1. Starting this Journey
    By mom2hunter in forum Child Neurology
    Replies: 2
    Last Post: 04-27-2017, 06:57 AM
  2. Who Else Has Questions About Their Health and Spiritual Journey?
    By NeuroNixed Craig in forum Multiple Sclerosis
    Replies: 28
    Last Post: 08-29-2012, 01:16 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts

BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.