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Thread: Jim's Journey

  1. #391
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    ((((((Hugs to All)))))) ~

    Jeannie, agate, funnylegs4, and Jeanie ~

    Thank you so very much for your love, prayers, and kindness. We are truly grateful and feel blessed, knowing you are supporting us every step of the way.

    I knew that the time would arrive, when Jim would need to be in Jon's bed. Jim resisted that option, but it wasn't until this past week, that he felt uncomfortable in his futon bed. He also liked being in the living room, so he was in the midst of the house. Jonathan's bedroom is in the back of our house. It's the quietest room in the house, and it's spacious, with a large picture window and a view of our backyard, Michael's and Jon's memorial gardens, and the trees on the greenbelt and in the distance.

    I opened the shutters today, and Jim smiled. "I know our yard is dirt, but it's still a lovely place. I see the view Jonathan saw. It's very nice and peaceful."

    He continues to mention how comfortable he is in Jon's bed. I said that makes me happy for him, but also for Jonathan, to know that he was as comfortable as possible, with all of his issues.

    When Jim asked me if I was okay, seeing him in Jon's bed, I said, "Of course. This is where you should be. Where Jon wants you to be. He knew how ill you were, and he made space for you in your time of need."

    I didn't remove Jon's special things entirely. I just relocated them. I need to find a place in Jon's room to put Jon's beautiful photo, the one John took the evening we put his new mattress on his bed the day before Thanksgiving 2018. We put it in the living room, where Jim could see him all of the time. Jim often talked with Jon through the photo.

    Nothing about any of this is easy, but I am praying and finding strength in knowing that Jonathan and Michael are present with us, and that Jim and I are doing what we need to do. And that all of you are praying for and loving us.

    LAST NIGHT

    Jim requested 2 lettuce, tomato, cheese sandwiches (2 because the bread is small). He ate 1 1/2 and a tub of applesauce.

    He said, "I realize now what I've done by not eating, when you continued to encourage me to eat something, anything. I just felt like I couldn't eat, because I was so full. I want to change that and start eating more. I know what I want for breakfast tomorrow: sloppy egg and fried potatoes. I want to gain some weight. I know I can't get it all back, but I can do better than I have."

    I am so happy that he said this, and he clearly means it, because this morning, he ate 1 whole egg, plus my yolk, and a good portion of fried potatoes.

    He's been off of O2 all night and today, with SATS in the mid 90s. He's had a couple of panic attacks after getting up and walking to/from the bathroom. So, I guide him through his breathing technique and calming him to envision his "happy place." It works, which is wonderful.

    He has had some pain, and I gave him T/C at 5 a.m., and a 1 p.m., and both times, he fell asleep. It is a blessing to be able to sleep, not cough or feel pain.

    THIS MORNING

    I put our old cable box in a grocery bag and left it on the front porch for John to pick up after he and his wife enjoyed a breakfast at a restaurant nearby. John had no problem with exchanging our old box for the new HD box. He was here at 11 a.m. and began hooking up the living room TV and the Blu-Ray and Jon's Blu-Ray.

    John told me, "I know how important TV and movies are to you. You can't get out for entertainment, so you need entertainment from TV and Blu-Rays. You can't be without it. Jimmy needs to watch soccer and golf. You know, the important stuff!"

    "Oh, and very ancient movies. And music." I added.


    Our old box took up half of the table. The new box is small, like a Blu-Ray player. It's tiny compared to the HD box John put in Jon's room for Jim too. Also, the whole system has changed in terms of presentation, like the guide to channels or the special menus for sports. Jim would never be able to figure this out, so I'm glad he has the old HD box.

    APPLE PIE

    Jim has had a thing for apple pie since his first hospitalization in 2017. Apple pie was on the menu, and it was so sweet and satisfying, so he craves it. The problem is that most apple pies have a ton of sugar in them. He asked for apple pie when he had his blood transfusion, and the nurses ordered 2 slices, because it was Jim's birthday. I tasted it, and it did nothing for me. But he loves it.

    So Jim asked John to pick up an apple pie for him the next time he goes to the cafe, where John and his wife had breakfast. It just so happens that John and his wife and extended family are going out to dinner tonight. John said, "I'll see if they serve apple pie."

    When I walked John out to his car, he asked me, "Should I get him an apple pie? Will you let him eat it?"

    I cringed. "Yeah ..." while praying the restaurant wouldn't serve it.

    Later, I texted John to scrap the pie. I'll get the ingredients, fresh apples, and a recipe with low sugar and make Jim an apple pie.

    John told me that there has been an outbreak of Hepatitis A linked to one of his favorite restaurants. The outbreak was in December, and John was there in November for his birthday. This is why I resist eating restaurant food after decades of not worrying about this kind of stuff.

    John donned his mask, as soon as he entered, and he's very mindful of protecting us in every way.

    So, anyone with a good recipe for low-sugar apple pie, please share with me. I'm going to buy frozen pastry. I used to be the Pie Queen in my youth, but I haven't made a pie for 30 or more years. My best and most favored pies were Pecan Pie and Chocolate Chip Cookie Pie. Talk about sugar overload!

    For now, that is us.

    We love you and pray for you and your loved ones, and we give abundant thanks for your love, prayers and support.

    Love & Light,



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

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  3. #392
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    Rose, So glad you got your TV all hooked up. I'm terrible and can't sleep unless I turn on the TV I know a bad habit but the sounds helps to turn off my mind a little. Glad Jim is wanting to eat more. I have to say that Apple pie is my speciality!! I usually make an apple pie with crumb topping which would be a no no! so much sugar. But I do make my own crust which of course has no sugar I don't know about the pre made but I don't imagine it does. I honestly never add sugar to my apples in the pie. I like the natural flavor of the apples I do add some cinnamon. I just put the bottom crust in the pan add the sliced apples sprinkle with some cinnamon and maybe a chunk of butter on top then cover with the top crust. I imagine you could aslo make small "turnovers" as well if you didn't want to make a whole pie. They freeze pretty well uncooked and could be saved for another day. Good luck I hope Jim loves his apple pie. Wish I could send one!
    mary grace

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  5. #393
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    Question Equipment Needs; Balancing Sleep with Nutrition, Fluids and Exercise

    ((((((Mary Grace)))))) ~

    That sounds perfect and easy! Would you mind giving me the exact recipe? At what temperature and for how long do you bake the pie?

    I found this recipe:

    https://www.allrecipes.com/recipe/15...gar-apple-pie/

    I like your recipe better. Could I add a bit of applesauce or apple juice to your recipe? What kind of apples do you use?

    I'm making an Instacart list, so I'll order the crusts and your choice of apples, if possible.

    JIM'S UPDATE

    Jim slept a lot yesterday. He took a Lasix but didn't pee for 3 hours, as he was sleeping. He also doesn't get fluids, when he's sleeping. When he woke up, I encouraged him to drink and try to pee. He did, but it was only 50 cc and dark amber. So, while he was awake, I encouraged him to drink water and Gatorade. He also wanted tea, of course.

    He ate an Amy's broccoli pie, but not the crust, some avocado and tomato. Then, he asked for a bite of a chocolate bar. Later, he requested a Boomin' Berry bagel, which he hasn't had for months. He ate 1/2 of the bagel with his tea.

    I went to bed about 12:30, but I couldn't sleep, because I worry about Jim falling, when he gets out of bed to go to the bathroom. I checked on him several times, and he was asleep at l:30. At 2:00, he woke up coughing, so I gave him a breathing treatment, more fluids, and he peed another 50 cc.

    By 3:00, he was asleep again, so I went to bed. I slept, even had dreams, but only for 3 hours.

    I bought a call system last year, but it doesn't work. I remembered that our land line phones have a paging feature. Jim knows how to use it. So, if I have the phone next to the bed, and he has the phone next to his bed, he can page me. It's loud and flashing, so I'll definitely hear it. We are going to institute that tonight.

    Another problem is that, like Jon, Jim slides down quickly in the bed. The mattress cover is slippery. It's difficult for Jim to pull himself up in the bed, and he has pain across his chest. I'm thinking that's mainly the affected rib, and we don't know whether cancer has spread, because Jim couldn't tolerate the CT/MRI.

    He suggested using a sawed off broom handle between the side rails to help him. I told him there must be medical equipment that would be better for him. So I found bed trapezes. I'm not sure whether Jim could handle doing this.

    I posted earlier in the MS forum about walkers and rollators, because Jim could use that assistance walking to/from the bathroom. I don't know which to get for him. It needs to be stable, so he can use it to help him to stand up to get out of bed.

    Jonathan's walker was in in our garage for decades, and now I can't find it. We may have donated it at some point. I just don't remember now.

    Nancy is always asking if Jim needs any equipment. Well, now he does. So, I will call/text her to see how she can help us.

    I also thought about a bedside commode. But we only have so much room, and even though Jon's room is spacious, it fills up fast.

    For breakfast, we had pancakes. I sprinkled raisins in Jim's pancake and topped it with 1/2 a banana. It was a large pancake, and he ate about 3/4 of it.

    For dinner, I peeled potatoes to mash and suggested that we have it with gravy (veggie mix), Gardein turkey cutlets, and peas. Jim said that sounded good to him.

    I know it isn't a lot of food, but it's something. And for a couple of days last week, he went without food for too long. He also didn't take his Lasix for 2 days, which I begged him to take.

    Since the move, I've been keeping track of Jim's vitals, but I haven't measured his waist or weighed him. I'd also like to persuade him to let me cut his hair and give him a bed bath. I'm praying that increasing his nutrition will boost him to feel up to all of these things.

    I haven't mentioned Jim's blood draw results, because I don't have them. For some reason, they aren't being posted on his health portal, which is one of the main reasons to have the portal. But Dr. K emailed me that Jim's hemoglobin is 8.2 from 7.0, prior to transfusion. So it helped. Not significantly, but enough.

    This information is rather important to me as Jim's caregiver. I wish the issues with the portal could be resolved. I've depended upon it for 3 years.

    So, that is us today.

    Thank you, Mary Grace, and all of our wonderful friends, for your love, prayers, support, suggestions, advice, and recipes! We love you and pray for you and your loved ones.

    Love & Light,



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

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  7. #394
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    Rose, I'm glad you like my Apple pie recipe. I have to warn you that I don't have an exact recipe. Something that kind of bothers my husband, he'll ask how long shoud I cook ****** My respons is usually something like till it's brown, till it's bubbly, till it's tender to a fork LOL. But what I can share is my favorite apple to bake with are Macintosh. They tend to cook up easier and softer. I generally use about 3-5lbs depending on the size of the pie pan. My pan is pretty deep so if it's not all that deep 3 lbs would probably work. I peel them and cor them and slice them pretty thin into the uncooked crust. On top I sprinkle a couple teaspoons of cinnamon (depending on your taste preference) I also top with a tablespoon or so of butter it helps to spread the cinnamon through the pie as it cooks. I know some people toss the slices with the cinnamon before putting them in the crust which works too ( just a step I neve feel the need to add for myself) I imagine it would be ok to add a bit of juice or applesauce if you want. I would probably toss the slices with either one before putting it in the crust. Be sure to put a couple of fork or knife pricks in the top crust before baking. I usually start out at 400 for about 15 minutes and then turn it down to 375 and here's where my "directions" get sketchy lol. I keep an eye on it to make sure it doesn't get too brown and stick a knife into the pie to test the apples. When they're tender it's done. If the crust is cooking too quickly you can lightly set a piece of foil on top of it. Don't seal it tight it could make it mushy. Good luck and let me know if you have any questions... Good luck I hope Jim loves his pie!
    Mary Grace

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  9. #395
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    ((((((Mary Grace)))))) ~

    Thank you! I searched my Instacart stores for McIntosh apples, but none of them carry them. We'll have to go with Fuji or Honey Crisp apples. I might add some applesauce, but then again, I might not.

    But, I am going to a store, which carries Hint water, and I will get a variety of flavors for Jim to try. Jim says he has seen Hint water ads on TV, so he knows what it is. Thank you!

    JIM'S UPDATE

    I slept better last night, with the phone at the bedside knowing that Jim could page me, if he needed help. Thankfully, he slept most of the night (well, we're talking about 4 hours), and he didn't need my help.

    His urine is clear, and he's peeing better now. We don't have the results of his UA yet. The MOM I gave him last night worked today, so we're happy about that.

    I ordered a rollator to help him get out of bed and walk to the bathroom, and a bed ladder, which he can use to pull himself up in bed. They will be here tomorrow.

    His SATS dropped to 87-88, and he said that he felt tightness in his chest, so he's getting 1.0 liters of O2 right now, and his SATS are 95.

    This morning, before his BM, he ate a tub of applesauce. He knows he needs to eat, and he wants to eat. When I see his hands trembling, I remind him that when he eats more, his hands are still. Right now, he is thinking about what he wants for dinner. I have a huge amount of mashed potatoes, which I made yesterday, but he didn't want last night.

    Jim says that he feels better today than yesterday. That's probably attributable to his BM. With a little more food in him, his BMs should continue. Jonathan's hospital nutritionist told us that the bowels need food coming in to push out the food already there. Also, from Jonathan, we know that the kidneys and liver compete for water.

    Today, I brought in more of Jim's supplies from the living room to Jon's room. I also brought in Jon's beautiful photo, placing it right next to Michael's photo, in clear view for Jim.

    I decided to clean the floors and rugs. The Dyson stick vacuum wasn't working properly, so I pulled it apart today and realized that I have never cleaned the floor vacuum attachment! I spent an hour pulling out debris, hair, who knows what, using screwdrivers, pliers, and my hands. This made me realize that I just don't think of these things, because I'm constantly dealing with dozens of other more important things. I was so happy to have it clean and working. I'll remember now to clean it regularly.

    While Jim was sleeping today, I began trying to reorganize and clean up our office. It is in chaos, which of course, reflects our life. I made a pretty good dent in it today, and that helped me feel a bit stronger.

    So, now I will find out what meal appeals to Jim for this evening. And we will implement the phone connection again. And tomorrow, he will have devices to help him function somewhat independently. How long that lasts is immaterial now. He wants to keep trying. So, I'm giving him the tools to do that. Just like his sons, Jim has a very strong will.

    Thank you, Mary Grace, and all of our dear friends for walking beside us on our journey. Because of you, we are stronger. We send you our love and prayers for you and your loved ones.

    Abundant Blessings ~

    Love & Light,



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

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  11. #396
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    Rose, My favorite baking apple is mac's BUT I haven met an apple I don't like LOL. Honeycrisp and Fuji are both good choices. I hope it comes out great! I hope Jim likes the Hint. Kathleen hasn't had juice in almost a year now! She does get a small soda on "you pick Fridays" LOL. Kathleen is so hooked on Hint water she has me buy it for eveyone's birthdays.
    Mary Grace

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  13. #397
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    Hi Rose!
    I'm just like Mary Grace - I love making apple pies and make my own pastry, using Macs if they have them. Empire apples are a good substitute but any apples will do. In Cat Island, they only have red delicious and they work fine too. I use brown sugar with a bit of flour and cinnamon on top and bits of butter. I usually make an open face pie, but sometimes I'll do both crusts (then you can use less sugar). As Mary Grace says, it's the butter mixing with the sugar (anything sugary) that caramelizes the sauce in the pie.
    I am so glad that you have a kind of walkie talkie system for Jim now - that must give you so much peace of mind. Well done for clearing out the vacuum! (My)Jim usually does that with ours - I wouldn't know how to do it. As you say so often, you just do what you have to do.
    I send you a lot of love from Cat Island - I am going this afternoon to rehearse a Valentine's play with the children at the orphanage (children's home). The title is True Never Dies and it's written by one of the young women who has lived her whole life in the home. I told her about your family and said, "Now that is an example of how "True Love Never Dies"!" Sending much love,
    Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  15. #398
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    hey!

    for many reasons (mostly cost), i don't buy bottled water. also, there was a class-action lawsuit brought against "hint" water because when tested it was found to have propylene glycol in it, which the lawsuit claims invalidates hint water's all natural labeling. i don't know if the lawsuit was settled. i include that for information.

    i have a water infuser pitcher that i put my own fruit in. this way i can just use the flavors i really like, use up over ripe fruit, mix fruits, etc. there are many on amazon. here is an example:
    https://www.amazon.com/Prodyne-FI-3-...1449382&sr=8-4

    jeannie
    WE ARE BT!
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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  17. #399
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    Default Apple Pie and a UTI

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

    Thank you all for sharing your recipes, thoughts and great advice!

    Mary Grace ~

    I can't recall a time, when I saw McIntosh apples in any of the stores, where I shop. Perhaps it's a regional thing? So many of our fruits and veggies are imported from Mexico, Ecuador, Chile. You'd never know that agriculture is one of California's biggest revenue sources!

    Now that tic chick has given us the heads up about Hint containing propylene glycol, we'll be giving it a pass. When I told Jim about it today, he shook his head, "No, I don't want to drink that."

    So happy to see Kathleen's prom photos. I'll post there next.

    Donna ~

    I'll bet your apple pie is delicious! I just don't have the time or energy to make my own crusts anymore. I have to limit my time standing in the kitchen, as our floors are concrete. Back in the day though, my crusts always turned out lovely. I come from a long line of German bakers, so some of it may be genetic.

    We have to keep an eye on Jim's glucose, so I'm trying to avoid adding sugar to his pie. I think I'll add applesauce, and I'll definitely use butter for the calories.

    As for the vacuum, that was my own neglect resulting in that blockage. I just never thought to take off the floor attachment to the Dyson Stick to check for debris. Then, the vacuum made weird noises. Jim suggested something might be stuck in the wand, but that was clear, when I took it apart. However the floor attachment was stuffed.

    Of course, this would have been a "Jim project," but now it's mine. Jim was advising me on what to do, and he said that he wished he could help me. I was pretty pleased, when I finally got it cleaned out. We gotta do what we gotta do! I can't call John every time something like this happens. I was an independent, self-sufficient woman for many years, before Jim magically appeared and took over all of those difficult tasks. Now, I am harkening back to the old days to find that independence again.

    How sweet of you to share our story with the playwright! I'm so anxious to see a video of the play! Please give her our love and best wishes, and congratulations on her play. True love never dies. So absolutely true.

    tic chick ~

    Thank you for letting me know about propylene glycol in Hint. I always look at labels to see if it's listed. It isn't on the Hint label, which I feel is deceptive. I couldn't find anything on the settlement. I do think this should be addressed in the courts with respect to detailed labeling of ingredients on any product. Too often products are listed as "natural," but they contain chemicals.

    And thank you for the link to the water infuser. We use bottled water, because we live in proximity to a former Superfund toxic waste site. Although we're told it is fully contained, I don't trust the groundwater. I worked for an environmental engineering firm in the 1980s, where I learned a ton of eye opening facts about toxins and environmental threats.

    My dad, who was a mechanical engineer, designed a reverse osmosis system for his tap water. But I still wouldn't trust our tap water or have any desire to drink it.

    We have cases of bottled water delivered. We had a large demand for drinking water, with Jonathan and Michael, and now, of course, with Jim. And I do worry about the plastic, which is a product containing propylene glycol, but these are the kinds of choices we have in 2020.

    OUR UPDATE

    Jim woke up feeling terrible, his belly swollen such that it was painful to sit upright in bed. So he stretched out, fell asleep, and while laying askew in the bed, his left leg fell down to the floor. Oh, dear! So, now I have to find something to prevent that, and we searched everywhere for Jonathan for rails to protect his legs. Nothing fit the bed properly or gave us access to him. But Jon couldn't move his legs, so he stayed upright.

    At 8 a.m., I received an email from Dr. K on the portal. Jim has a UTI. He prescribed Macrobid. Here's what our Drug Info link has to say about Macrobid:

    Talk to your doctor about the safe use of this medication if you are 65 years of age or older. Older adults should not normally take nitrofurantoin because it is not as safe as other medications that can be used to treat the same condition.

    Side Effects:
    dark yellow or brown urine
    nausea
    vomiting
    loss of appetite
    difficulty breathing
    excessive tiredness
    fever or chills
    chest pain
    persistent cough
    numbness, tingling, or pinprick sensation in the fingers and toes
    muscle weakness
    swelling of the lips or tongue
    skin rash
    I immediately sent Dr. K an email with the above warnings, and I said I didn't feel comfortable giving it to Jim. Jon couldn't take Macrobid, because it interacted with Dilantin. This is different but still concerning for Jim.

    Then, I called Dr. K's office and left a message that Jim can't take Macrobid and will need a different antibiotic. Foolishly, I didn't list the ones he could take in my message. So, I called again with that information.

    I called our pharmacy several times to tell them to table the Macrobid and wait for another script. They are all so wonderful at our pharmacy. They know us very well, and they show so much compassion for us. Cheerful, smiling, caring. And it's a drive thru, so bonus!

    At 1:30, Dr. K emailed that he'd order Amoxicillin, per my request, although in his experience, most patients tolerate Macrobid well. You know what? He said the same thing about Nexium, and 2 weeks after taking it, Jim was a mess with side effects.

    Am I the only one, who is looking outside of the box here? One size does not fit all. Look at that list of side effects and compare it to what you all know about Jim through our updates. He is at high risk for those side effects.

    In between Jim's naps, I shared all of this with him, and at 2:30, I drove to the pharmacy and brought home all of his meds!

    Jim was feeling a bit better, and he is heeding my cautions to drink more water to flush his system.

    Bed Ladder and Rollator

    When I came home, Jim's bed ladder and rollator were on our doorstep.

    We began with the bed ladder, which I had to attach to the bed rail on the foot of the bed. I had to sit on the floor to do this. Once I adjusted the strap to Jim's height, I scooted on my bottom to the chair bed and used my arms to lift my bum up onto the chair bed. I couldn't get up on my knees or with any other support.

    Jim used the bed ladder and got straight up in the bed on the first try! "This is great," he declared. "This is the easiest it's been for me to get up in the bed, and I don't feel a strain from doing it! Thank you, honey!"

    So, YAY!

    Then I lifted up the mattress pump, realizing that I hadn't changed the filter since April 2019. This used to be a job for the two of us, Jim lifts the pump, I change the filter. Now, it's a one person job. I have done it before, and I did it again.

    Next, pulling the rollator out of it's large box and taking it in to Jim. At this point, he asked me to take a break, because he knew that I was overextending. So the rollator, which is blue and very pretty is waiting for us to put it together after he wakes up from his evening nap.

    Jim has increased his water and fluid intake today, which has resulted in more output. When he tells me that he's been drinking water, I pick up the bottle and say, "I put this here last night. I know how much you've had. It's not enough. If you want to feel better, we have to get the urine flowing out of you, darling."

    Jim requested a repeat of last night's meal, a sloppy egg and fried mashed potatoes. I am fine with that. As long as he is eating and enjoying his food and able to to tolerate it.

    I'm praying that getting this UTI under control will result in a big improvement for Jim. This may have been brewing for awhile.

    For now, that is us.

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

    Love & Light,



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

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

    Thank you all for sharing your recipes, thoughts and great advice!

    Mary Grace ~

    I can't recall a time, when I saw McIntosh apples in any of the stores, where I shop. Perhaps it's a regional thing? So many of our fruits and veggies are imported from Mexico, Ecuador, Chile. You'd never know that agriculture is one of California's biggest revenue sources!

    Now that tic chick has given us the heads up about Hint containing propylene glycol, we'll be giving it a pass. When I told Jim about it today, he shook his head, "No, I don't want to drink that."

    So happy to see Kathleen's prom photos. I'll post there next.

    Donna ~

    I'll bet your apple pie is delicious! I just don't have the time or energy to make my own crusts anymore. I have to limit my time standing in the kitchen, as our floors are concrete. Back in the day though, my crusts always turned out lovely. I come from a long line of German bakers, so some of it may be genetic.

    We have to keep an eye on Jim's glucose, so I'm trying to avoid adding sugar to his pie. I think I'll add applesauce, and I'll definitely use butter for the calories.

    As for the vacuum, that was my own neglect resulting in that blockage. I just never thought to take off the floor attachment to the Dyson Stick to check for debris. Then, the vacuum made weird noises. Jim suggested something might be stuck in the wand, but that was clear, when I took it apart. However the floor attachment was stuffed.

    Of course, this would have been a "Jim project," but now it's mine. Jim was advising me on what to do, and he said that he wished he could help me. I was pretty pleased, when I finally got it cleaned out. We gotta do what we gotta do! I can't call John every time something like this happens. I was an independent, self-sufficient woman for many years, before Jim magically appeared and took over all of those difficult tasks. Now, I am harkening back to the old days to find that independence again.

    How sweet of you to share our story with the playwright! I'm so anxious to see a video of the play! Please give her our love and best wishes, and congratulations on her play. True love never dies. So absolutely true.

    tic chick ~

    Thank you for letting me know about propylene glycol in Hint. I always look at labels to see if it's listed. It isn't on the Hint label, which I feel is deceptive. I couldn't find anything on the settlement. I do think this should be addressed in the courts with respect to detailed labeling of ingredients on any product. Too often products are listed as "natural," but they contain chemicals.

    And thank you for the link to the water infuser. We use bottled water, because we live in proximity to a former Superfund toxic waste site. Although we're told it is fully contained, I don't trust the groundwater. I worked for an environmental engineering firm in the 1980s, where I learned a ton of eye opening facts about toxins and environmental threats.

    My dad, who was a mechanical engineer, designed a reverse osmosis system for his tap water. But I still wouldn't trust our tap water or have any desire to drink it.

    We have cases of bottled water delivered. We had a large demand for drinking water, with Jonathan and Michael, and now, of course, with Jim. And I do worry about the plastic, which is a product containing propylene glycol, but these are the kinds of choices we have in 2020.

    OUR UPDATE

    Jim woke up feeling terrible, his belly swollen such that it was painful to sit upright in bed. So he stretched out, fell asleep, and while laying askew in the bed, his left leg fell down to the floor. Oh, dear! So, now I have to find something to prevent that, and we searched everywhere for Jonathan for rails to protect his legs. Nothing fit the bed properly or gave us access to him. But Jon couldn't move his legs, so he stayed upright.

    At 8 a.m., I received an email from Dr. K on the portal. Jim has a UTI. He prescribed Macrobid. Here's what our Drug Info link has to say about Macrobid:



    I immediately sent Dr. K an email with the above warnings, and I said I didn't feel comfortable giving it to Jim. Jon couldn't take Macrobid, because it interacted with Dilantin. This is different but still concerning for Jim.

    Then, I called Dr. K's office and left a message that Jim can't take Macrobid and will need a different antibiotic. Foolishly, I didn't list the ones he could take in my message. So, I called again with that information.

    I called our pharmacy several times to tell them to table the Macrobid and wait for another script. They are all so wonderful at our pharmacy. They know us very well, and they show so much compassion for us. Cheerful, smiling, caring. And it's a drive thru, so bonus!

    At 1:30, Dr. K emailed that he'd order Amoxicillin, per my request, although in his experience, most patients tolerate Macrobid well. You know what? He said the same thing about Nexium, and 2 weeks after taking it, Jim was a mess with side effects.

    Am I the only one, who is looking outside of the box here? One size does not fit all. Look at that list of side effects and compare it to what you all know about Jim through our updates. He is at high risk for those side effects.

    In between Jim's naps, I shared all of this with him, and at 2:30, I drove to the pharmacy and brought home all of his meds!

    Jim was feeling a bit better, and he is heeding my cautions to drink more water to flush his system.

    Bed Ladder and Rollator

    When I came home, Jim's bed ladder and rollator were on our doorstep.

    We began with the bed ladder, which I had to attach to the bed rail on the foot of the bed. I had to sit on the floor to do this. Once I adjusted the strap to Jim's height, I scooted on my bottom to the chair bed and used my arms to lift my bum up onto the chair bed. I couldn't get up on my knees or with any other support.

    Jim used the bed ladder and got straight up in the bed on the first try! "This is great," he declared. "This is the easiest it's been for me to get up in the bed, and I don't feel a strain from doing it! Thank you, honey!"

    So, YAY!

    Then I lifted up the mattress pump, realizing that I hadn't changed the filter since April 2019. This used to be a job for the two of us, Jim lifts the pump, I change the filter. Now, it's a one person job. I have done it before, and I did it again.

    Next, pulling the rollator out of it's large box and taking it in to Jim. At this point, he asked me to take a break, because he knew that I was overextending. So the rollator, which is blue and very pretty is waiting for us to put it together after he wakes up from his evening nap.

    Jim has increased his water and fluid intake today, which has resulted in more output. When he tells me that he's been drinking water, I pick up the bottle and say, "I put this here last night. I know how much you've had. It's not enough. If you want to feel better, we have to get the urine flowing out of you, darling."

    Jim requested a repeat of last night's meal, a sloppy egg and fried mashed potatoes. I am fine with that. As long as he is eating and enjoying his food and able to to tolerate it.

    I'm praying that getting this UTI under control will result in a big improvement for Jim. This may have been brewing for awhile.

    For now, that is us.

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

    Love & Light,



    Rose
    Hi Rose,

    Yes the same is true for me with BMs. I have to eat to “go”. I’m so sorry Jim has a UTI. But so so glad the bed ladder worked out!!! Yay!

    Update on my diabetic friend in case you are interested: So I saw him in person and I got more of the story. He had a really bad reaction to a new brand of insulin and fell and hit his head badly causing him to pass out. His head was bleeding and he was unconscious for 20 minutes then in and out of consciousness for the next 24 hrs after that. He has zero memory of our first few phone calls when he stayed overnight in the ER because after he would hang up he would go semi unconscious again, even though he sounded awake. His talks with me were not cognitively reliable at the time he was in the hospital so I don’t blame him for any faulty info he gave me. His brain seems fine now but he definitely nearly died and that’s terrifying!
    PLEASE Pray he has no permanent brain damage and this NEVER happens again! I just held him in my arms today happy he was alive.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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