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Thread: CN Central: Let's Talk

  1. #11
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I am certainly praying for your friend. Needing a catheter often correlates with an infection prohibiting urine flow. The longer urine is held, the greater the risk of a septic infection, which is life-threatening. A catheter will allow the urine to evacuate and relieve pressure. Diabetes and urine issues are related. While a person might have the urge to pee frequently, it's possible that the urine output will be insufficient. I will pray for good health care for him and send healing energy.

    When someone we love has severe medical problems, we are always on the edge waiting for the next one to occur. This is when you need to be sure to take good care of yourself. So, please do take good care of yourself.

    Two weeks without power might do me in at this point. You have my great respect for so many things, and this one goes on the list. Perhaps this reaction is because I had to worry about Jon and Michael (and then Jim) during power outages, or disasters like earthquakes and fires. Now, I feel vulnerable as I'm old and falling apart. I'm grateful for John and his family, because I know they would rescue me and help me in that situation.

    Donna ~

    So good to hear that Jim is feeling better. The puffy face may be from Prednisone or water retention. Does he have swelling anywhere else? Perhaps you could ask his physician whether decreasing the dose might be a possibility. Also, his sugar levels may be elevated. Jim's were, primarily because of Prednisone. I know your baked delights are irresistible, so you might consider on reducing Jim's sugar intake for awhile. Not denying him. Just being moderate.

    No grass grows under your feet, my dear! Teaching and research and advocating. Interesting that you refer to this as keeping you "amused." You have a calling, Donna, and you're fulfilling that calling, which strengthens you to keep going. Thank you so much for your perseverance and dedication. Your efforts, your work are making the world a better place. Thank you.

    As for cooking, well, that's just not my forte any longer. I'm too tired to do the work in the kitchen, on a hard concrete floor, standing for hours, even with sitting breaks. Cooking for Jim and my boys, friends, family, when I was younger, was a joy. Now, I'm alone, cooking for me, and it's a chore.

    When I cook, I think of Jim, and how I could not find anything suitable for him toward the end of his journey. Even the simplest meals did not appeal to him, and I felt defeated. He insisted on having chicken, which I knew would make him ill, and it did.

    I think about last Christmas, our first without Jonathan, and my last with Jim, where I clogged the kitchen drain with potato peels and drove around town in the rain to find a plunger, which didn't work to clear it. The next day, our dear plumber arrived and cleaned out the drain for us, as I begged him so that we could have Christmas dinner. There was and still is mold under the kitchen sink, and he didn't want to get in there. But he did it for us.

    When he left, I worked hours on that meal, which Jim could barely eat.

    So, cooking that roast for myself with the trimmings was a very big step for me. But, I didn't enjoy it as much as I thought I would. I did have leftovers, which was a bonus, but I was also very exhausted from cooking and cleaning up.

    I know my limitations, and my energy level is a tad on the low side these days.

    The one good thing in my life these past few days has been watching the Dodgers try to make their way to the World Series. John and I text during the games, which is a blessing, because I feel so lonely without having Jim and Jonathan here to share it with me. John and I were stunned when the Dodgers hit 11 runs in the first inning of the third of seven games. That was historic! Tonight is the last, and the winner goes to the World Series.

    Of course, the Lakers won the NBA championship, and my Three Angels are very pleased about that! As are Kobe and Gigi. Bless them all.

    Thank you for sending me your love, and I send my love to you and all of our dear friends here, and your loved ones.

    Be safe, be well, be strong, and find joy amid the chaos.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Hi Rose, thanks so much for the info on diabetes and urine. I knew diabetes could cause excessive thirst and kidney issues but I didn't know infections could also block the whole system up. My friend has a genetic problem that causes both diabetes and a separate condition he called "Diabetes insipidus" and he said this complication was more Diabetes insipidus related than related to the blood sugar diabetes. Eek! Don't worry I'm still doing my self care. Since the pandemic has prevented visits all I can do is call him daily.
    As to the outages I just learned these techniques from family who had been through the same thing in years past because of Hurricanes etc, so it's natural for us to know. I greatly appreciate the compliments! Yes I know for sure John would help you.

    Donna, teaching sounds fun! Enjoy!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #12
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    Donna, Nice to see you checking in with an update. Sounds like you''re keeping very busy.
    Funnylegs, Many prayers for your friend! I hope things are looking up. Keep us posted when you can. It's so hard to not be able to visit I'm sure.
    Rose, We're pretty easy to please as far as eating during the power outage. Dry cereal, bars, the first night we made sandwiches (and expected the power to be on any minute LOL). What I missed most was coffee! With covid I didn't want to go out to get it but on Friday morning I went to my daughter's for coffee. I had some things for Kathleen for meals (stayed frozen for the first day or so)and my husband went to a neighbors (they have a generator) and used their microwave. We pretty much threw out all the frozen and fridge stuff. Except for some condiments and drinks that were safe to keep. I didn't want to take any chances with anything that may have spoiled. I probably could have saved some but I'm not a risk taker LOL! After the fact we found out that my sister inlaw has an extra generator so next time we're set for at least a little power. The weather here is still so nice! We're very lucky right now to be able to be outside. I'm trying to not get down about the holidays and probably the lack of family being together. Over the weekend we went out to get a pumpkin. Kathleen picked one out and we cut it and cooked some seeds. I'll post some pictures. It was so nice to take her out and do something fun! ( it was totally outside). Kathleen uses Golytely for her cecostomy flush through her Mic Key button. We get 5 jugs of it a month. I just called in her script last week and got a call that it was on order. Well a few days went past so I called yesterday and they checked on it and for some bizarre reason it's backordered till November! I have none left! She checked some other local pharmacies and they're out as well. So today I need to get on the phone with her surgeons office and see if they can get us some. So crazy even the pharmacist was totally baffled by this shortage.
    Stay safe friends! ((((HUGS))) to you all.
    Mary Grace

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  7. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I am not familiar with Diabetes Insipidus. I would imagine that this is another complication for your friend in managing his health, and I pray that everything is under control now and will remain so for him. I am glad that you are taking good care of yourself. I know that it must be difficult for you not to visit him, but I'm sure that he treasures your phone calls and friendship.

    Mary Grace ~

    Oh my! I'm praying you track down some Golytely soon! Have you tried calling the manufacturer of Golytely? Perhaps you could get somewhere if you speak directly to the company and explain Kathleen's situation. I remember calling the manufacturer of Jon's G tube formula in a similar situation. They had some kind of processing problem, but they helped me track down available cases of formula to keep Jon fed. It's worth a try, if your surgeon can't help you.

    Good idea to throw out stuff just in case, as the saying goes "when in doubt, throw it out!" (Recently quoted by agate in another thread.)

    Love the photos of Kathleen! She is clearly having fun, and she exudes Joy! The pumpkin behind her is gigantic! How do they manage to grow gourds to be that large? Amazing!

    As the holidays approach, I'm sure that millions of families feel as you do about not being able to gather to celebrate. While it isn't the same, at least you can connect virtually and be "together" in that way. Perhaps you could send or drop off gifts and then open them while you celebrate virtually. Each make your own holiday meal and share your dinner virtually.

    I think of all of the families of the over 220,000 people in the U.S., who have died from COVID, and how much they will miss their loved ones during the holidays. I know how they feel, but at least I was able to be with Jim, Jon and Michael when they passed. And, I knew it was coming, so I was prepared. COVID gave them no time to prepare.

    John and I chatted this morning about how happy we are that our Dodgers are playing in the World Series. He bemoaned the fact that COVID prevents us from watching the games together. Although we see each other every week, we try to limit our time together, and these games last for 3 to 4 hours.

    We make up for it by texting constantly throughout the games. He understands that I miss Jim and Jon and appreciate sharing the events with him. He enjoys it too, since I've been a Dodger fan since my childhood, so I'm well informed. Plus, we make lots of jokes during the games.

    It's not the way we wish it could be, but we are still connecting, enjoying each other's company, and celebrating together. We have to glean whatever we can from whatever is best and safest for us. Well, for me, actually, because he and his family fear getting COVID and giving it to me.

    With your creativity and imagination, I am sure that you will find a way to make the holidays special with all of your family.

    All of my love, prayers, and healing, positive energy to all of our dear friends here 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. #16
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Six Months: When It Gets Worse, Before It Gets Better

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

    October 20 marked 6 months since Jimís passing. I remember distinctly how I felt at the 6 month mark after Michael and Jonathan passed.

    At this point, I had gone through a series of Firsts: birthdays, holidays, special occasions. But there would be another 6 months of Firsts awaiting me.

    In Jimís case, Iíve been through these Firsts without Jim:

    Easter, Motherís Day, Michaelís 17th Angelversary, Fatherís Day, Fourth of July, Our Wedding Anniversary, Labor Day, My Birthday.

    Other Firsts include sports: Following the Dodgers into the World Series, and Ohio Stateís opening game yesterday. We always watched together with all of our regalia.

    Firsts On the Horizon: Halloweíen (because we always made a big deal out of it in our neighborhood), Jonathanís 51st Birthday, Michaelís 50th Birthday, Thanksgiving, Christmas, New Yearís Eve, New Yearís Day, Jimís 73rd Birthday, Valentineís Day, Jonathanís 3rd Angelversary. Jimís First Angelversary.

    After Michael passed, I was active on several forums for grieving parents. I surveyed these parents asking which year was the most difficult in their grief journey. The First Year was the overwhelming choice.

    Sometimes during the First Year, strange things happen to us, and we suffer from Grief Brain.

    I thought I lost the key to our mailbox a few days ago, was ready to call a locksmith, and found the key, after searching everywhere literally, beside the futon bed, where it must have fallen out of my pocket.

    Friday, I thought my cell phone battery was used up, so I panicked and ordered two batteries on line. I knew it was charged, but I couldnít get a screen. That is, until I turned the phone on.

    How am I? Really? Just functional. I clean, take out the trash, feed myself, water plants when I feel like it, and make needed phone calls at a minimum. Even though I rest and get a sufficient amount of sleep, I am always tired. Exhausted. Iím always on edge waiting for the next big problem or issue I have to solve. There have been many, and there will be many more.

    John is on medical leave for 3 weeks after removal of a basal cell cancer spot on his shoulder. He canít lift anything, which is required in his job. So, Iím hoping that we can get the van and his car smogged, and the van donated and his car registered to me. We have some other things we need to do together, and this will give us the window to do them.

    Yesterday, I turned around, after straightening the futon linens, and my wedding ring flew off of my finger onto the floor. I gasped, of course, found it, and wondered whether Iíd lost too much weight. I hadnít checked my weight for awhile, so I got on the scale. I have gained 6 pounds in the last 6 months. So that rules out weight loss.

    What caused my wedding ring to fly across the room? The ring is now on my right hand, where I have a larger knuckle from RA. But, after nearly three decades of my wedding ring being there, my left hand feels bare.

    Was this a message to me? If so, what is the message? Something I must ponder and try to understand.

    Our weather is now cooler and cloudy most mornings. This is good, naturally, but it doesnít help my mood. Sunrise seems to take forever now, and Iím wandering around in the dark of the morning, feeling very alone. I havenít been walking for quite awhile. I miss it, but I need light and sunshine to motivate me.

    So, Iím pulling out all of the tools in my coping cornucopia and taking each day as it comes, with prayers for peace and comfort, and reassurance that my beloveds are close by and watching over me.

    As always, I pray for all of you and your loved ones and send you healing, strengthening, positive energy in these difficult times. Thank you for allowing me to share my journey with you, and thank you for sharing your journeys with me. I 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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  13. #17
    Distinguished Community Member agate's Avatar
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    Rose, I guess we're all tempted to read meanings into unexplainable things that happen. I know I am. So maybe the wedding ring that jumped off your finger had something to do with a message from somewhere out there in the great beyond telling you that Jim is actually gone, hard though that is to believe.

    After many years with a person, how can that person really be gone? People I've cared about who have died are living on, very definitely, in my memories of them. Little flashes of moments spent with them come to me each day. I just know that they're living on, at least in me and perhaps in anyone else who knew them.

    I hope you'll have some sunny fall days to enjoy, with smokefree air if possible, so that you can get back to walking before winter sets in.

    This coming weekend we will have an extra hour.
    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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  15. #18
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Agate ~

    Thank you for your thoughts about my wedding ring. Like you, I believe that our loved ones live on, as in life after death.

    Jim isn't gone, by any means, nor are Jonathan and Michael. I feel their presence all of the time. I also wondered if it was symbolic of our "til death parts us" vow. Even after death, we are still reunited.

    Could it have been some kind of warning? About what, I don't know. Maybe it was just a fluke. I put the ring back on my left hand, and it's been fine. I have tested it several times. It's lose, but not falling off. So, I'm being careful with it.

    I dread the time change, both ways, as it just screws up my biological system terribly. That's the last thing I need right now, but there isn't a thing I can do about it.

    I'm surrounded by two raging fires now, the skies are smoky, the smell is putrid, the air is very unhealthful, and it's unpleasant in every way. No walks for a long time now that there are two new fires to contain. I wonder if our air will ever be good again.

    Meanwhile, sending love, prayers, healing positive energy to you and all of our friends here and your loved ones. Be safe, be well, be strong, find joy wherever you can.

    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. #19
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    My dear Rose and all my friends here on CN,
    I'm sorry that I've been MIA but I am so glad to catch up on all your news. Rose, I wanted to ask you about the fires! Mary Grace, I loved seeing your photos - Kathleen looks fantastic!

    Over here, we are doing OK. Jim is getting stronger every day. He's still on a high dose of prednisone but he comes down by 10mg every month and hope that he does not have flares of his giant cell arteritis that would need them to look at upping his meds again. Nick is doing well but he said he is feeling "angry, sad, worried" this week because his favourite day time staff member (full time) is moving away. Her last day is next Thursday and Nick will miss her very much. The other full time day position is unfilled too so this means all his days will be filled with people who do know Nick but who nevertheless are casual. So, Jim and I are supporting Nick a lot these days. I was there 2x this week and we call at least once a day. Other than visits to Nick, we try to stay home. Covid numbers are high around us so we are very, very careful.

    I am having a lot of fun with work. Teaching is great fun and I'm also working on a project to train family caregivers in (free) video training materials about infection control protocols. This training is available if you google it but it's all for medical professionals. We want to design something esp. for us and create partnerships with long term care and hospitals so that families can with their loved ones. Lots of people are locked out right now - it's up to the individual homes whether family members can be at the bedside.

    Covid is so strange - we are all so isolated. But we are finding this to do even though we miss our family. I was going through old photos and found this one of my Mom fixing the model's dress for photo shoot circa 1940. Mom used to work for Max Sauer photography in New York and Montreal. She loved that job!
    Mom Max Sauer.jpg

    Rose, I miss you! Tell me more about your days - I love to hear what you are cooking. Tonight I made chicken burritos and guacomole - everything homemade of course. :) Dinner is so exciting during Covid 19! Oh, also, I am trying not to watch so much news. It's too distressing.

    Love to all!!!
    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: http://www.donnathomson.com


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  19. #20
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Donna ~

    I've missed you too! You have your hands full and busy days.

    It's good to hear that Jim is continuing to improve, and I pray that he is able to wean down on the Prednisone without any setbacks. It can be a challenge, I know.

    But I'm sad to hear that Nick is losing another caregiver ~ someone, who knows and understands him, and who he trusts. I will pray that he develops a good relationship with the remaining staff, and that another caregiver will be hired, who will be a perfect fit for Nick.

    What a classic and wonderful photo of your mom! I watch lots of movies from that era and love the styles. Thank you for sharing this precious picture.

    You are a fantastic teacher, which is why you are enjoying your work so much. I'm interested in the video training you are working on, and I hope you will share it with us once it's completed. It's heart wrenching that COVID prevents people from being with their loved ones, when they are ill for any reason or in a home or facility, which prohibits visitation.

    The U.S., as I'm sure you know, is experiencing a surge in COVID cases and deaths. I'm not surprised, after seeing the people jam packed at rallies not wearing masks. Masks should be a mandated law now.

    We have a law requiring us to wear seat belts, when we drive. That law is to protect us and others on the road in a collision. We have a law requiring motorcyclists to wear a helmet. How is a mask different? In the middle of a pandemic from a highly contagious and deadly virus, wearing a mask protects us and the people around us. Every medical professional and scientist says that wearing a mask is the best prevention we have now.

    Of course, John and I are thrilled that the Dodgers won the World Series, but COVID managed to tarnish that victory. One of the Dodgers tested positive and was removed from the game in the 8th inning of the final game. He was isolated, but after they won, he ran onto the field, hugging his teammates, holding the trophy, posing without a mask on for the team photograph.

    The MLB is investigating. This is a star player, and the team is like a brotherhood. They've been living in a "bubble" for 25 days, and for 7 innings, he was in the dugout and on the field during that game. Everyone had already been exposed to him, especially since many of the players have masks but often didn't wear them. Plus, baseball players spit, high five, touch bats, balls, their faces, each other during a game.

    So, this begs the question: Although fans want sports to continue during COVID, is it really a good idea, when clearly the athletes don't social distance, wear masks or wash their hands? Sure, the stands are essentially empty, but it can still spread among the teams and their administrative staff. And from them to the community at large.

    As John and I drove down our main street in our city on Monday, he started pointing out to me all of the places, which have gone out of business. Shut down, empty. Some of these restaurants and boutiques have been here for a half century. This is my hometown, and it hurts to see it withering and losing its character. We raised a lot of money to restore our historic downtown theater district. Sadly, it sits silent and unfinished.

    These are the effects of COVID that we all feel and experience, and the fear of getting this beast creates tension, stress, and anger.

    When reflecting upon how long it has been since I have been hugged or hugged someone, it has been 7 months. Jim wasn't able to hug me, as he began declining. We held hands, and I hugged him as he was in his bed. Hugging, meaning holding close, is the greatest expression of love and comfort we can give to each other.

    John and I have established no hugging all this time, but we've both said so often, "I'm hugging you right now." It's not the same, but it's something, and the only thing we can have now.

    It's difficult to imagine an end to this and to our returning to anything even resembling life before COVID. Scientists are warning us that there are more viruses out there, which is our future.

    I'm surrounded by two fires right now, and Hurricane Zeta just wreaked havoc on the Gulf Coast. It's really difficult to keep a "stiff upper lip" as Jim used to quip, when this is life on Earth now.

    Somehow, we all must find a way to adapt to these drastic changes, stay safe, be well, and maintain hope that we can turn it all around.

    Well, that wasn't very uplifting, was it? Unfortunately, it is our reality. I pray for positive outcomes. Constantly.

    With that, I send my love and prayers to you, Jim, Nick, Natalie and your wonderful family and loved ones, as well as to all of our friends here and your loved ones.

    Be safe, be well, and find joy anywhere you can in the midst of sorrow.

    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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