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Thread: Jim's Journey

  1. #481
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    Good news. Whew! I’m so happy to hear this.

    ANN
    There comes a time when silence is betrayal.- MLK

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  3. #482
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    Default Send Prayers Around the World!

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

    Thank you Jeanie, agate, and ANN!

    When Jim woke up, groggy and getting his bearings, I gave him a few minutes. I opened the shutters to the gorgeous, sunny day. He told me that he was feeling pretty good.

    I said, "Well ..."

    Jim replied, "Good News?"

    "Yes! Yes! Yes!"

    Big Hug! Big Kiss!

    I read the pertinent results to him, and his smile melted my heart. "Looks like I'm not fully cooked yet."

    He hasn't taken Lasix for 3 days, but his urine output would embarrass a Triple Crown Winner. It's absolutely clear. No pain during urination, but it is voluminous. Could 3 doses of Augmenten still be working? Because he has missed 3 doses to allow his gut to settle.

    My instinct tells me not to give Jim Lasix, in case he becomes dehydrated. Augmenten is something that I'm weighing carefully. Jim cannot afford to lose any more weight. He was only able to eat a small amount of oatmeal, applesauce and blueberries today. His belly is full, but it also fluctuates, depending upon his output. We can't even contemplate going to the hospital for drainage now.

    Flying by the seat of my pants now ...

    I am continuously thinking about everything ... "what am I going to do about this?" "what's the best solution for this?" "how am I going to get this blasted plumbing done?"

    Oh, and yes ... there's a pandemic. A deadly pandemic. Rapidly spreading around the world. More people are dying. The numbers drastically increase every day. People are self-isolating, social distancing, and going bonkers after only 2 weeks of doing so. Italian mayors are screaming on videos to their citizens to stay home. They are cursing and threatening to send in the police with flame throwers to disburse crowds.

    And while many people are distressed that they can't get toilet paper, health care workers, doctors, nurses, aides, therapists, phlebotomists, pharmacists, home health nurses, EMTs, administrative staff, are on the front lines battling COVID-19 without proper masks, gowns, gloves. They are forced to reuse masks between patients. Some are cutting up large trash bags to put over their scrubs, because they have no gowns.

    Not enough ICU beds, ventilators, other necessary supplies and treatments. They are putting their lives on the line, and the lives of their families, when they go home after their shift. Those are the heroes in this crisis. Let's all honor them and pray for them. They are the soldiers on the battlefield fighting the COVID-19 war, without sufficient armament to do so.

    We send you our love and prayers, and we thank you so much for your love, prayers and support. We're here for you, as you are here for us.

    We are all in this together. The huge and the not so big and everything in between.


    Be Safe. Be Well. Send Love and Prayers Around the World.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  5. #483
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    Rose, So glad to hear some good news! So glad you don't have to go to any medical facility for now.
    NY coronavirus numbers as of last night were 44,000. Mostly in NYC but growing around the state. When I start to panic I really try to think of positive things and calm myself. Yesterday was a beautiful sunny day so getting outside was helpful but the next few days are going to be raining. Praying for everyone to get through this safely and as quickly as possible. Sending you back a virtual germ free hug!
    Mary Grace

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  7. #484
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    How frightening for you all with that many cases in New York. Your Governor seems to be on the front lines, and I just pray that you get all of the things you need to bring this under control.

    I'm sorry that rain is in your forecast, because I know how helpful it is to get outside. We've had quite a bit of rain in the past week or so, which is great for the state, but it does put the kibosh on outdoor activities. I don't walk in the rain or on wet sidewalks, as I fear slipping and falling. And I miss it. So, I really understand what you mean. Blue skies ahead for you, I pray.

    Thank you for your virtual hug! We may have reached a point in our Earthly genetic journey, where hugs, handshakes, and close embraces will no longer be safe for us. That is heartbreaking, because a hug is the most wonderful way to express love filled with comfort. Where I have always handed out hugs freely, I now shun them. It's so difficult to see Nancy and not hug her. And we haven't seen John, and that would be difficult not to hug him.

    As my mind often takes a path I'd prefer not to travel, I have contemplated Jonathan's First Angelversary with the recognition that we have not been able to have a service to celebrate his life. Then my mind wanders down the path of losing Jim, and a celebration of life for him. When, if ever, will I be able to gather our loved ones together to honor Jonathan and Jim? Any attempt would have to be via internet. This makes me sad, of course. I will miss the hugs of everyone, who loves us.

    We hold your family close in prayer, Mary Grace. Stay strong and be well.

    CHANGES

    After 24 years of vegetarianism, Jim has now decided that he wants to eat roast chicken to help him fatten up. Because Jim has serious digestive issues, I fear him introducing poultry after such a long hiatus. But he is adamant that he wants an organic roasted chicken.

    I am not really on board with this, but Jim insists. So, I asked John if he could find a roasted organic chicken, as he is still working as a rep for a large distributor, which means that he's in different grocery stores every day assessing their needs for stock. John is considered an essential worker and is receiving hazard pay. John will get whatever Jim wants, of course, but Jim will have to wait until Monday at least, and he needs to be prepared to find out that none of the stores have chicken.

    Jim also wants fish. "I'll start with kippers for breakfast." I had to remind him that we're not living in the U.K. currently. Also, no fish for 24 years, and a bad digestive system says to me "let's not push the envelope." And ... mercury. Fish isn't safe for anyone any longer. Things have changed so much, but Jim is reveling in the past.

    Unfortunately, I am a hard and fast vegetarian, so the thought of handling, cooking and slicing any animal is repulsive to me. I explained this to Jim, and he understood. So, John is looking for a cooked roasted chicken. I will still have to chop it and slice it. I am dreading that and Jim's response to chicken after 24 years.

    Nancy told me to feed him whatever he wants. Even if it makes him more ill and unable to eat for days afterward? What is the point in that? He has pleasure for a moment and pain for days.

    Tonight, I'm getting as close to chicken as I can. He's having egg salad on lettuce and other safe veggies.


    COMPUTER SCARE!

    While we were in the processing of changing britches and lifting up in the bed last night, we had a sudden electrical outage. It lasted a minute or so, before electricity was restored. The mattress was deflating under Jim rapidly. Light were off. I freaked. Jim told me to calm down.

    I don't know how to hook up our generator, nor does John. Jim can't lay in a deflated mattress, just as Jon couldn't. You might be shocked by how many images can run through your brain during a potential crisis onset.

    Thankfully, power returned, the bed reinflated, and I changed the clocks on the stove and microwave.

    Then, I walked upstairs to the computer with trepidation. I haven't shut down the computer since September 2019, because at that time, I was afraid that it wouldn't ever return. I put the computer to "sleep," but I never shut down.

    The power outage shut down the computer, which I turned on with hope. I got the apple, the spinning gear, then a white page, then a black page. I sat in front of the computer, stressed and tearful. I thought about the iPad and how I need to learn it more efficiently. I also checked the iPad to discover that it had 6% power left. Plugged it in and recharged it, anticipating the worst.

    While Jim slept, I anticipated not having access to my big monitor, all of my bookmarks and favorites, etc. I knew that this would make life more challenging for me. Shaking my head, wondering why everything is happening all at once now. There is no break from stress of any kind now. Why?

    After a couple of hours of a black screen, I finally retreated to bed. I was prepared to rely on the iPad, because I have no other choice. Jim said, "Just buy another computer!" He has forgotten how complicated it was to install every computer we've had (and there have been many).

    Our iMac is too heavy for me to lift, and I couldn't lift and carry a new one upstairs. I have to get on the floor under the desk to unhook the old and hook up the new. I'm not in the right physical shape to do that. And John would do this, but we have to "social distance" from him, as he's on the front lines.

    This morning, decaf in hand, I turned on the computer, and there was my sign-in page! It's back! It's back! IT'S BACK!!!!!

    I don't know why we had an outage, why I had to stress over the computer, the iPad, chicken, fish, et al. But the fact that my beloved old computer is still working for me after being shut down is a blessing. Otherwise, you would have read two sentences as a reply, because the iPad is time consuming.

    Now, I'm off to make egg salad. I will not think about the chicken until it arrives. Don't count your chicken before the eggs hatch, as my mom used to say.

    And never forget: A bird in the hand is worth two in the bush.

    My mom was the Queen of Cliches.

    We thank you all for your love and prayers and continuing support. We pray for you and your loved ones to be safe, well, filled with peace, calm, and love.

    We have each other. We are not alone.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  9. #485
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    Exclamation COVID -19 Videos and Conflict

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

    I just posted a new thread on the MS Forum, because it is the most active forum on BrainTalk. But, I want to ensure that everyone here on CN sees the thread too, so here is the link:

    http://www.braintalkcommunities.org/...5219#post95219

    I posted links to two YouTube video Interviews with two experts on COVID-19, Dr. Fauci and Dr. Kass. Extremely valuable information about the virus, symptoms, treatment, and more. Please click on the link above, then, click on the links to the videos. It is well worth the time.

    The only way to be safe is to be informed.

    JIM'S UPDATE

    Jim and I are conflicted about restarting Augmenten, because it nauseates him and takes away his appetite. He wants and needs to eat. John is on a search tomorrow for a roasted chicken ( UGH!). If we get a chicken, and Jim isn't interested in eating it, well, that will be quite unfortunate.

    His urine output has been voluminous, but Nancy says that is from the infection. And today, he had traces of blood in his output on the briefs pad. So, here we go again with anemia, because of a UTI.

    His gut is also expanding, so I want him to go back on Lasix.

    Conflicted on all counts. So, I'll be writing to Dr. K and asking for his guidance. If he says Macrobid, I may scream, and no matter where you live, you'll probably hear me.

    PLUMBING

    I haven't done anything about the plumbing problems. There just isn't any way we can get it done, with Jim sleeping throughout the mornings and afternoon. If our plumbers would work from midnight to 5 a.m., that would be different.

    The work involves the ceiling of Jon's closet, where Jim is. What do we do if Jim needs a BM, while they are in the closet working? Or if we have to change his britches, and clothes, and so forth. This is all intimate care. While we love our plumber family, Dad, sons, and other relatives, some things are PRIVATE! And they aren't going to want to be in there during these times.

    Moreover, I have to remove everything from the closet for them to access the ceiling and to protect everything in the closet from whatever disaster may happen. Unless I work from midnight to 5 a.m., that isn't going to happen any time soon. And those, by the way, are the hours I'm on the futon, with the phone beside me waiting for Jim's page, my heating pad on my back, praying, and trying to rest and sleep. So, yeah, that isn't a really good time for me to be evacuating everything from Jon's closet. I mean it is stuffed to the brim. Literally. Floor to ceiling.

    CHICKEN!

    On top of all of this, Jim wants to eat chicken!

    I didn't tell Jim this, but John texted that he and family were getting El Pollo Loco for dinner and wanted to know whether Jim would like a couple of pieces of chicken. I texted him explaining that Jim can't tolerate spices or tomato or acidic stuff. I thanked him for his generous offer, and I reminded him how much we love and appreciate him.

    In the early 90s, before Michael and Jonathan began declining, and before we became vegetarians, El Pollo Loco bowls were one of our favorite take out foods. Much healthier than Taco Bell or KFC. Tomatoes, lettuce, avocado, olives, cheese, salsa, and broiled chicken with a pleasant dressing.

    I just didn't want to tempt Jim with that notion. He will not be able to tolerate that. I guarantee it. Nope. Not gonna happen, and it is best that he has no idea John and I discussed it.

    ENTERTAINMENT

    Jim and I have watched some very good movies. However, either he or I fall asleep in the middle of them. For me, being on Jon's chairbed has always been and remains uncomfortable. Yet, I cave into exhaustion and sleep.

    Jim told me last night that he feels safe, when I am near him. And just watching me sleep and rest made him feel better. He knows that I get "all stove up" after an hour or more on the chairbed, and he feels sorry for me. I work out the knots eventually. I'm used to this. The chairbed was my perch for Jonathan, and now it is my perch for Jim.

    Yesterday afternoon, I watched a TCM movie for an hour and a half, on the chairbed, while I waited for Jim to wake up. During that time, I found myself nodding off, and waking up, so I could be present for Jim.

    Today, I treated him to a video of a Scottish sports broadcaster trying to fill in the gap of "lack of any sports anywhere." He has two dogs, and he announces their mealtime call. It's adorable:

    https://twitter.com/MrAndrewCotter

    Scroll down to his tweet, "I was bored."

    Jim loved it. Of course.

    OUR LOVE AND GRATITUDE TO ALL. BE WELL AND BE SAFE. OUR PRAYERS ARE WITH YOU AND YOUR LOVED ONES.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  11. #486
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    Rose, I don't suppose Jim could use a commode temporarily while the plumbing work is being done?
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  13. #487
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    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 just posted a new thread on the MS Forum, because it is the most active forum on BrainTalk. But, I want to ensure that everyone here on CN sees the thread too, so here is the link:

    http://www.braintalkcommunities.org/...5219#post95219

    I posted links to two YouTube video Interviews with two experts on COVID-19, Dr. Fauci and Dr. Kass. Extremely valuable information about the virus, symptoms, treatment, and more. Please click on the link above, then, click on the links to the videos. It is well worth the time.

    The only way to be safe is to be informed.

    JIM'S UPDATE

    Jim and I are conflicted about restarting Augmenten, because it nauseates him and takes away his appetite. He wants and needs to eat. John is on a search tomorrow for a roasted chicken ( UGH!). If we get a chicken, and Jim isn't interested in eating it, well, that will be quite unfortunate.

    His urine output has been voluminous, but Nancy says that is from the infection. And today, he had traces of blood in his output on the briefs pad. So, here we go again with anemia, because of a UTI.

    His gut is also expanding, so I want him to go back on Lasix.

    Conflicted on all counts. So, I'll be writing to Dr. K and asking for his guidance. If he says Macrobid, I may scream, and no matter where you live, you'll probably hear me.

    PLUMBING

    I haven't done anything about the plumbing problems. There just isn't any way we can get it done, with Jim sleeping throughout the mornings and afternoon. If our plumbers would work from midnight to 5 a.m., that would be different.

    The work involves the ceiling of Jon's closet, where Jim is. What do we do if Jim needs a BM, while they are in the closet working? Or if we have to change his britches, and clothes, and so forth. This is all intimate care. While we love our plumber family, Dad, sons, and other relatives, some things are PRIVATE! And they aren't going to want to be in there during these times.

    Moreover, I have to remove everything from the closet for them to access the ceiling and to protect everything in the closet from whatever disaster may happen. Unless I work from midnight to 5 a.m., that isn't going to happen any time soon. And those, by the way, are the hours I'm on the futon, with the phone beside me waiting for Jim's page, my heating pad on my back, praying, and trying to rest and sleep. So, yeah, that isn't a really good time for me to be evacuating everything from Jon's closet. I mean it is stuffed to the brim. Literally. Floor to ceiling.

    CHICKEN!

    On top of all of this, Jim wants to eat chicken!

    I didn't tell Jim this, but John texted that he and family were getting El Pollo Loco for dinner and wanted to know whether Jim would like a couple of pieces of chicken. I texted him explaining that Jim can't tolerate spices or tomato or acidic stuff. I thanked him for his generous offer, and I reminded him how much we love and appreciate him.

    In the early 90s, before Michael and Jonathan began declining, and before we became vegetarians, El Pollo Loco bowls were one of our favorite take out foods. Much healthier than Taco Bell or KFC. Tomatoes, lettuce, avocado, olives, cheese, salsa, and broiled chicken with a pleasant dressing.

    I just didn't want to tempt Jim with that notion. He will not be able to tolerate that. I guarantee it. Nope. Not gonna happen, and it is best that he has no idea John and I discussed it.

    ENTERTAINMENT

    Jim and I have watched some very good movies. However, either he or I fall asleep in the middle of them. For me, being on Jon's chairbed has always been and remains uncomfortable. Yet, I cave into exhaustion and sleep.

    Jim told me last night that he feels safe, when I am near him. And just watching me sleep and rest made him feel better. He knows that I get "all stove up" after an hour or more on the chairbed, and he feels sorry for me. I work out the knots eventually. I'm used to this. The chairbed was my perch for Jonathan, and now it is my perch for Jim.

    Yesterday afternoon, I watched a TCM movie for an hour and a half, on the chairbed, while I waited for Jim to wake up. During that time, I found myself nodding off, and waking up, so I could be present for Jim.

    Today, I treated him to a video of a Scottish sports broadcaster trying to fill in the gap of "lack of any sports anywhere." He has two dogs, and he announces their mealtime call. It's adorable:

    https://twitter.com/MrAndrewCotter

    Scroll down to his tweet, "I was bored."

    Jim loved it. Of course.

    OUR LOVE AND GRATITUDE TO ALL. BE WELL AND BE SAFE. OUR PRAYERS ARE WITH YOU AND YOUR LOVED ONES.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Hi Rose,

    Thanks for the COVID19 info. Re: Chicken. Chicken when it is by itself is one of the blandest, easiest meats to have digested which is why vets put dogs on chicken and rice diets when they have GI upsets. Turkey is also pretty easy on the stomach. Try small pieces of Chicken without seasoning, or chicken soup cans without any salt. If he reacts badly you just stop, but the higher protein might be just what the Dr ordered. No fish though IMHO. Fish is harder on the system.

    Re: Computer. Glad your old computer turned on again! You still have the Time Machine backup yes? If worse comes to worse, here’s what I did: I ordered a laptop from home shopping, called Apple to install via phone, and plugged my old ethernet cable into one of the plugs on the side of the laptop, to avoid wifi use. Laptops are easier, Apple just helps you with Time Machine and passwords. That’s it if I remember correctly via phone. Definitely get to know the iPad well in case the other one fails.

    Re: Mr Rogers. Yes. I didn’t realize the scene with the cop was so significant as a kid.

    As for me I seem to have been forgiven for my bad digital communication. Perfectly healthy and getting into a routine with online work.
    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. #488
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    Unhappy Chicken

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

    Today, John delivered rotisserie chicken to our front porch. It is not organic, so we donít know how it was raised, fed, or whether it was given antibiotics. We donít even know the name of the product, as itís in a plastic carry bag, which is also microwavable.

    He also brought us carrots, which are not organic, and we donít know what pesticides might have been used on them or where they were grown.

    I wasnít happy, as I wiped down the bag of chicken with a Lysol wipe (wearing gloves) in the garage.

    As Jim slept all day, I worried about him eating this chicken. When he woke up and was sorted out, I brought the bag of chicken in to tell him about it. He was crestfallen.

    John doesnít service the groceries, where we buy most of our organic products, so he got what he could find. Unfortunately, Jim will not be eating it. And, I will have to explain to John why organic food is so important to us, and it works, as evidenced by the fact that weíre both still here.

    I attempted to assure Jim that I would endeavor to find him organic chicken on Instacart with our favorite small franchise store, specializing in healthy foods.

    I found several organic chicken options, including deli sliced, so I donít have to handle the chicken. Yeah, I know it sounds strange to people, who arenít vegetarians, but seeing that poor small chicken in that bag broke my heart. I know the kind of conditions these chickens experience, and itís horrible. And I am loathe to chop it apart. I just canít do that.

    But I am doing this for Jim, so whatever I must do, I will do.

    I collected up more items with hope that some would still be in stock by the time I could get a delivery.

    Well, no times are available for delivery at all. Instacart shoppers went on strike today. Grocery stores have changed their hours. Probably most of the items I have on my list are not now or will not be in stock by the time delivery dates are reinstated.

    I checked for ďpick upĒ times, and every pick up location is 20-35 miles from our home.

    Next option: I drive 25 minutes from our home, go into the store, shop, load/unload groceries, sterilize them, put them away, and start cooking. That leaves Jim unattended for nearly 2 hours.

    Obviously, I cannot do that.

    As I explained in todayís email to Dr. K, who encouraged me to get more nutrition into Jim, Iím doing the best I can during a pandemic! Maybe he isnít experiencing hardship, but we are.

    UTI OPTION

    Dr. K ordered Ceftin, a cephlasporin, eg, Keflex), for the UTI. It has the same side effects of Augmenten, nausea, vomiting, diarrhea. Hey, thanks for the options, doc! He lost weight on Augmenten because he had nausea, vomiting and diarrhea. So letís just keep up on that track, eh?

    Then, Dr. K tells me to give him Ensure or Boost, when Iíve told him repeatedly that Jim drinks Orgain. Like itís my fault that Jim isnít getting his protein.

    If we could resolve this blasted UTI, without depleting Jim of his appetite or ability to benefit from the food he takes in, then Jim could start gaining weight.

    I donít think this is cancer, but who knows? To me this is a UTI, which responded well to Amoxicillin, but returned, and responded well to Augmenten, but caused Jim to lose his appetite, hence, weight.

    How do we win this battle?

    We pray for all of you to be well and safe during this pandemic and beyond. Wash your hands, donít touch your face, stay in your home, save lives, including your own. We love you!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  17. #489
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    Rose, my experience is that people tolerate Keflex much better than Augmenten. That does not mean it will be the same for Jim. Maybe try it?

    Best to you both,
    ANN
    There comes a time when silence is betrayal.- MLK

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  19. #490
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    ((((((Hugs to All)))))) ~

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

    agate ~

    Thank you for your suggestion.

    COMMODE/PLUMBING

    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 ~

    CHICKEN

    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.

    COMPUTER

    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.

    ANN~

    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,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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