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Thread: Jim's Journey

  1. #41
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    ((((((Hugs to All)))))) ~

    Jim's blood test results remain stable, per Dr. K's notes on Jim's health portal.

    We were a little disappointed that his WBC had dropped from 2.2 to 1.6, and his neutrophils dropped from 1.8 to 1.3. His platelets are good at 61, while his glucose is elevated at 220, up from 120.

    Jim has agreed to drink less tea to avoid the extra sugar he puts in it. He's also been eating ready-made Simple Mills cookies, because I got tired of baking them. The ones I make are bite-size, so he gets less sugar. I'll be going to back to that route now, as Jim can't resist a big cookie (or two).

    His muscles have been sore in his back/shoulder/under his arm on the left side, where the tumor is. He has had a habit of reaching around on his left side to get kleenex, when he's on the potty, or to get the nebulizer for his treatment on his bed, and he reaches forward with his left hand, while sitting on the side of the bed to get his med bottles.

    He ran out of Tylenol and forgot to tell me it was getting low. So, he took Advil a few times, until I could replace the Tylenol. I've applied Aspercreme alternating with a Tiger Balm patch to the area. When those wear off, he uses his heating pad.

    Jim is trying to retrain himself, so that he doesn't overstretch with his left arm, while turning in that direction. Put the tissues on the counter, before you sit down, or use the toilet paper for kleenex. Stand up, walk to the front of the bed to access the nebulizer. Scoot over a few inches, so that you can reach with your right hand to get your meds off of the coffee table.

    On Sunday, while I was taking a shower, Jim moved the van off the driveway onto the street and hosed it down, so it would be ready to go for me to run an errand. When I came downstairs, Jim was gasping for air. He told me what he did, and I just shook my head as I handed him his inhaler.

    He thinks that he can do more than he can do, and he desperately wants to help me in any possible way that he can. I hugged him and told him never to do that again, when I'm inaccessible. Or even ever again period. It's too much exertion.

    This morning, I added water to Michael's pond and scooped out algae and goo. Jim called to me from the dining room, where he was eating his breakfast, to tell me how to do this task. I smiled and thanked him. I've only been doing this every week for at least 3 years. But, this was his job, and he wants to be involved.

    This afternoon, as we stood side by side looking out the kitchen window at our pitiful dirt yard and our beautiful boys' gardens, Jim said, "I wish that I could do more to help you."

    As I snuggled into Jim, I responded, "You're here, and that is everything." I paused, "And I think I've shrunk another inch. Pretty soon, I'll be a gnome."

    We laughed, and Jim said, "You're small, but you're mighty, Mama!"

    Hardly. I'm mighty tired, that's for sure.

    But we keep moving forward with hope, love, and your prayers and healing, positive energy flowing to us.

    We thank you all and pray for you and your loved ones. I've missed all of you, and I hope you will all check in soon with your updates.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  3. #42
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    Rose, So glad Jim's blood results were stable for the most part.
    I don't know if it would be any easier but I make a really easy peanut butte cookie for Kathleen. I'm sure you could use any nut butter but we use a cup of natural peanut butter one egg, and instead of the 1 cup of sugar they call for we use half a cup of sugar and half a cup of oats. Stir it all up and drop or roll balls on a cookie tray. They cook in only about 5 minutes. We sometimes put an M&M on top... They're pretty healthy and low sugar.
    You're so right just having each other is everything! All the rest will get done or maybe it won't but just being together everyday is a gift. You and Jim are in my daily thoughts and prayers.

    I've been working on getting an orthopedic dr. in place for Kathleen but it's not been easy... Haven't found one that gets the fact that she is as disabled as she is and needs monitoring of several orthopedic issues. She seems to have a "sore" that isn't going aways. It looks like a thin cut about an inch long right between the line of pubic hair and her belly... Not near her underware at all I've checked to see if that's rubbing it but no. It may have started with an ingrown hair or pimple I don't really remember seeing it start. It seems to have a black scab but isn't really changing or getting better. Not getting worse either. I check it daily and don't see signs of infection but I just don't know why it's not going away... I may have to have the Dr. check it out. It's a little sore, I know because she won't let me touch it just look.
    Hoping to get some of our summer pictures up soon.
    Mary Grace

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  5. #43
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    ((((((Mary Grace)))))) ~

    Thank you so much for your prayers.

    Might Shriner's be able to refer you to an orthopedist? Once their patients age out of their services, it would be nice if Shriner's had referrals to physicians, who treat adults with disabilities.

    For Kathleen's sore, have you put anything on it, such a neosporin? I'd try soaking it for a little while with Witch Hazel, dry it, put on some neosporin, bandaid, and see if it improves. Is it hard? Does it seem to have a core? Has the size changed at all? I gather that she doesn't have this kind of sore anywhere else on her body. I think your guess about an ingrown hair is a good one.

    Could you take a picture of it and send it to Kathleen's doctor? Some doctors might be willing to go that route to avoid an office visit. But lots of doctors insist on an office visit. You know, $$$.

    Looking forward to your summer photos. Will Kathleen be returning to school?

    We keep you, Kathleen and your beautiful family in our prayers always and give thanks for your love and support of us through the years.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  7. #44
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    Now interrupting this thread —-

    to say the cookies sound great to me, Mary Grace!

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

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  9. #45
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    Rose great idea with the witch hazel. That I think she'll tolerate. I've put neosporin on it but she will not tolerate a bandaid.
    Mary Grace

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  11. #46
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    My dear Rose,
    I am so glad to read your update! For some reason, I was looking at the other (older) thread about Jim and messaging you there. Oh well, now I have your news and I am much relieved, but of course there is always something to worry about in lab results. I think you are right about the sugar - perhaps cutting back on that will make a positive difference. I've updated you on our news over the on the other thread. I send you much love and know that you, Jim and your angel sons are always, always in my prayers. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  13. #47
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    ((((((Hugs to All))))))

    Mary Grace ~

    I suggested the bandaid to keep the neosporin in place.


    Will Kathleen tolerate a pad soaked in witch hazel? I hope that it will heal quickly.

    Donna ~

    I know that itís confusing with all of the different threads Iíve got going here.

    HAPPY BIRTHDAY NICK!

    You havenít changed Nickís and Natalieís birthdays in your signature in a long time, Donna. How old are they now?

    Please let Nick know that Jim (and I, but mostly Jim) has been rooting for Liverpool too. Jim is a Manchester United fan, and they didnít play well in their last game. He roots for Liverpool on Nickís behalf!

    Iím so glad that you had a wonderful visit with Natalie and Alex. Wishing Natalie all of the best on her PhD studies. Itís grueling, and Iíll be thinking of her and sending her positive energy.

    JIM THE HANDYMAN

    Today, Jim put up a dog silencer, which uses a high pitched sonic sound to deter barking dogs. Itís harmless, it just trains the dog over a week or so that barking will induce an unpleasant sound, and the dog stops barking. We used it years ago, and it was effective.

    The poor, neglected dog on the corner just barks all day and night. Not his fault; he has owners, who think his only purpose is ďguard dog.Ē We are home 24 hours every day, with windows and patio door open, and the barking is driving us bonkers.

    It was easy, of course, just getting the hammer and nail to hang it on our eucalyptus tree. But that is the first ďhandymanĒ thing heís done in a long time.

    Yesterday, Jim was listing off all of the projects, which he plans on being able to do someday, around the house and yards. "Iím going to clean out my workshop and reorganize it,Ē he said.

    His workshop, where he crafted Native American flutes, is a disaster. A few years ago it had to be all cleared out so that a hole could be cut in the floor to remove a beehive. He was upset about it, and he just tossed everything into a pile on the other side of the shop.

    I sighed. ďHoney, even if you didnít have cancer, you are still in your 70s, and you have severe RA. God willing, youíll keep aging, and everything will still be too much for you to do. You have had severe pain in your side from a pulled muscle, just from turning the wrong way. I know how much you long to do all of these things. But it is unrealistic.Ē

    Later, he said, ďI know itís a pipe dream. I miss being able to do things, to help you, to be useful.Ē

    ďThe most useful thing you can do right now is being here for me. Just being here, being well and not suffering. Talking to me, listening to me, grieving with me, loving me, holding me, being my partner in all decisions and choices. We can and will hire professionals to landscape the yard, fix all thatís broken, and create a new home for us. But only you can meet my emotional, spiritual, and human needs. You are useful to me in the most important way.Ē

    Itís difficult to be old and incapacitated. We remember how we were, when we were young, and now, every day is a new reminder that weíve lost many of our abilities.

    MEANWHILE ...

    I pulled a groin muscle in my right leg sometime yesterday. Aspercreme helps for awhile. Later I used the heating pad. Havenít tried Witch Hazel yet, but itís on the agenda. I did take one regular strength Tylenol at Jimís begging today. It has helped.

    Nonetheless, last night I had to take the trash bins to the curb, as well as 15 large empty boxes, which have been accumulating in our garage.

    Jim was a sous chef for me last night, but I ended up making the dinner and cleaning up afterwards.

    Today, I ordered from Instacart and had an issue with the site loading showing my order, called Instacart and after 25 minutes, it was semi-fixed. Their problem, not our computerís problem.

    The shoppers always ask the cashier to make the bags light, but they never do. So I had to haul all of the bags in from the front door to the kitchen, which is not that far, unless you have a groin pull and bad back. Then unload the groceries, wipe it all down with alcohol and put it all away.

    My computer keyboard has gone wonky, so I ordered a new Apple keyboard. It arrived today, but itís wireless, and we arenít. So, off to Amazon to find another wired keyboard compatible with a Mac. I finally found one, and it will be delivered tomorrow.

    Just like Jim and me, our appliances and equipment are old and wearing out. As you all know, this keyboard does a yeomanís job for me!

    Using workarounds on the keyboard has taken me 3 times as long as usual to write this post.

    So, itís a good time to conclude, and youíre all relieved!

    We love you and thank you for walking beside us, loving us and praying for us. Our prayers are with you and your loved ones always.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  15. #48
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    ROSE, DO NOT LET ANYTHING HAPPEN TO YOUR KEYBOARD WITHOUT A REPLACEMENT!!!!
    Virginia

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  17. #49
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    (((((Hugs to All)))))) ~

    Virginia ~



    Youíll be happy to know that Iím typing on my new keyboard and using my space age mouse! It will take some adjusting for me to stop using my ďworkaroundsĒ with the old keyboard. It has a nice feel to the keys, although itís louder, when I type, than my old Mac keyboard and not as sleek.

    Our Mac is 6 years old, and I have never updated the OS, which is really foolish of me. Years ago, a friend sent me a ďDummiesĒ book for upgrading Mac OS, and itís quite thick. I just didnít think I could handle the stress at the time, and then life became even more stressful, so Ö

    Someday, I will ask John to go with me to the Apple store, so I can buy a new Mac and have all of my data on the old one transferred. I need Johnís help, because I canít lift and carry the Mac. Itís pretty heavy, at least for me.

    We are very old school with our computer and cell phone. We arenít wireless, and we donít have WiFi. I donít want all of that electromagnetic stuff around us. And, trying to understand technical/technological stuff really stresses me.

    I also wonder about privacy with wireless devices. We once received an invoice through our printer, addressed to our neighbors! I donít know how that happened, although the printer has wireless access, which we canít use. John tried that to set up Jimís iPad, and it didnít work.

    The older I get, the more flustered I am with learning technological things.

    This morning, I couldnít access our web mail. I got a 502 Gateway message, then it turned into ďContact your administrator.Ē I tried shutting down the computer, using a different browser, trying to connect through the service provider, and nothing.

    It was time for the Buckeyes game, so I left it to watch the game with Jim. We sure missed Jonathan, and all his fun Buckeye hats, flags, and ďblingĒ (beaded necklaces, which he didnít wear, but wanted to have handy). Jon loved it, when I sang the fight songs and alma mater, and especially ďHang on Sloopy,Ē which became a game song, when I attended OSU.

    After the game, I decided to prepare myself to call our ISP but gave one last try to access our web mail first. WOW! It was back! I am so grateful!

    This afternoon, Jim decided to bring the trash bins in from the street, as Iíd forgotten to do it. I didnít walk this morning, as Iím still nursing my groin pull, which is better, but I want it to stay that way.

    I begged him not to do it, but he insisted and said heíd be fine. Our driveway is inclined, and it was in the upper 80s. Bad idea. He burst into the house out of breath, gasping, his heart racing. He grabbed his inhaler, but he couldnít slow down enough to inhale. I verbally tried to calm him, because if I get in his space, he feels claustrophobic. He used his inhaler and calmed down.

    ďNow, you understand why I donít want you to do these things to help me,Ē I said, as he looked done in and disappointed. ďIím sorry. I wish you could, but you canít, and you have to just let me take care of everything. You have to.Ē

    He agreed, and he said heís learned his lesson. So, the next time that he offers to do something strenuous to help me, Iíll remind him of today.

    Now, Iím going to attempt to copy and paste this into a post!

    Thank you for your enthusiasm for me to have at least a keyboard, any kind of keyboard. I feel appreciated.

    Prayers for you as Dorian continues to perplex the scientists. I hope it misses you.

    We love you and keep you in our prayers.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  19. #50
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    (((((Hugs to All)))))) ~

    Virginia ~



    Youíll be happy to know that Iím typing on my new keyboard and using my space age mouse! It will take some adjusting for me to stop using my ďworkaroundsĒ with the old keyboard. It has a nice feel to the keys, although itís louder, when I type, than my old Mac keyboard and not as sleek.

    Our Mac is 6 years old, and I have never updated the OS, which is really foolish of me. Years ago, a friend sent me a ďDummiesĒ book for upgrading Mac OS, and itís quite thick. I just didnít think I could handle the stress at the time, and then life became even more stressful, so Ö

    Someday, I will ask John to go with me to the Apple store, so I can buy a new Mac and have all of my data on the old one transferred. I need Johnís help, because I canít lift and carry the Mac. Itís pretty heavy, at least for me.

    We are very old school with our computer and cell phone. We arenít wireless, and we donít have WiFi. I donít want all of that electromagnetic stuff around us. And, trying to understand technical/technological stuff really stresses me.

    I also wonder about privacy with wireless devices. We once received an invoice through our printer, addressed to our neighbors! I donít know how that happened, although the printer has wireless access, which we canít use. John tried that to set up Jimís iPad, and it didnít work.

    The older I get, the more flustered I am with learning technological things.

    This morning, I couldnít access our web mail. I got a 502 Gateway message, then it turned into ďContact your administrator.Ē I tried shutting down the computer, using a different browser, trying to connect through the service provider, and nothing.

    It was time for the Buckeyes game, so I left it to watch the game with Jim. We sure missed Jonathan, and all his fun Buckeye hats, flags, and ďblingĒ (beaded necklaces, which he didnít wear, but wanted to have handy). Jon loved it, when I sang the fight songs and alma mater, and especially ďHang on Sloopy,Ē which became a game song, when I attended OSU.

    After the game, I decided to prepare myself to call our ISP but gave one last try to access our web mail first. WOW! It was back! I am so grateful!

    This afternoon, Jim decided to bring the trash bins in from the street, as Iíd forgotten to do it. I didnít walk this morning, as Iím still nursing my groin pull, which is better, but I want it to stay that way.

    I begged him not to do it, but he insisted and said heíd be fine. Our driveway is inclined, and it was in the upper 80s. Bad idea. He burst into the house out of breath, gasping, his heart racing. He grabbed his inhaler, but he couldnít slow down enough to inhale. I verbally tried to calm him, because if I get in his space, he feels claustrophobic. He used his inhaler and calmed down.

    ďNow, you understand why I donít want you to do these things to help me,Ē I said, as he looked done in and disappointed. ďIím sorry. I wish you could, but you canít, and you have to just let me take care of everything. You have to.Ē

    He agreed, and he said heís learned his lesson. So, the next time that he offers to do something strenuous to help me, Iíll remind him of today.

    Now, Iím going to attempt to copy and paste this into a post!

    Thank you for your enthusiasm for me to have at least a keyboard, any kind of keyboard. I feel appreciated.

    Prayers for you as Dorian continues to perplex the scientists. I hope it misses you.

    We love you and keep you in our prayers.

    Love & Light,



    Rose
    Hi Rose,

    About the computer, I get that error even though my computer is no where near as old so I think those types of errors have to do with the web mail site itself or your internet (called ethernet if connected to wall) was not as strong that day. Wait a few hrs for those errors to resolve by itself then get help if it does not work. You will need to update the OS eventually or get a new computer eventually since the Macs eventually go kaput without software updates.

    So sorry Jim was out of breath and still feels a bit useless. :( Prayers he feels better and prayers to you for your injury.

    P.S No worries, no hurricane stuff where I am!
    Last edited by funnylegs4; 09-01-2019 at 02:45 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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