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Thread: Jim's Update

  1. #161
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you Mary Grace and Virginia, and to all who are joining in prayer and sending us positive energy. We feel your love and support, and it strengthens us.

    The problem with getting any kind of help is scheduling. Life here is unpredictable. I have enough trouble scheduling home health visits for Jon, one day a week to run errands, and household repairs. As long as I pace myself with cleaning, I'm okay, but when we have visitors, I go the extra couple of miles. We've been trying to remodel our home for 15 years, and it is unfinished in every way. Michael got sick, then Jon, now Jim. Things just didn't get done. So, when I clean it's like putting lipstick on a pig.

    Jon has a new case manager for one of his programs, and she has to make a triennial visit to evaluate Jon and assess his needs. I have a week to sparkle up the place. HA! Not enough time to get everything repaired. I'm sure she's seen worse. Our home is clean, tidy, and functional.

    Yes, we have a futon bed in the living room, and everywhere you look, you see medicine bottles. But, hey! Look at our nice artwork!

    And yes, our kitchen floor is the concrete slab with a cheap piece of linoleum on it, and our walls have swatches of 12 different possible colors on them. But hey! Check out the cool cabinets and granite counter top, which we had placed in 2008, before Jon got sick.

    Years ago, a nurse told us, "You can't do everything. Just do what you have to do, and leave the rest." So that's what we've done.

    JIM'S UPDATE

    Jim had an infusion last Thursday. He drove himself with no problems. His WBC and RBC are quite low. I guess the antibiotics have worn off from his bout with pneumonia. Now, they have to recalibrate.

    He will be taking a break from chemo for a couple of weeks, and then he will have a CAT scan to determine whether there are any changes. Dr. P seems to be leaning toward weaning Jim off of Navelbine, and we don't know whether that is a good or bad thing. She may want to put him on a maintenance drug, or she may want to change the chemo drug. Or ...

    Meanwhile, Jim is feeling good, and he's been able to turn Jon with no problems. He's also helping me with household chores.

    And we feel positive about his progress.

    JONATHAN'S NEWS

    After reading about ways to treat blistered skin from lymphedema, I tried applying honey and almond organic lotion to Jon's legs. The first day, we saw an improvement. The next day, his skin was inflamed and weeping. So we've gone back to witch hazel to dry it out. His legs are enormous with fluid, but we can't compress them, when they are blistered and weeping. And compression simply moves the fluid up to his torso, and compromises his heart and lungs.

    Lymphedema is a no win situation.

    Still, Jon remains cheerful and mischievous. His vitals are excellent and his outputs are very good. So, we give thanks for the blessings we have.

    Thank you all for your support. Our prayers are with you and your loved ones always.

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  3. #162
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    So glad Jim had a successful infusion and is feeling good! Since you bring up the break from Chemo etc I thought I would show you this https://www.provisionproton.com It works on lung cancer and only targets the tumor itself supposedly. I saw it on TV last week. My prayers as always.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  5. #163
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    Always great to hear good news. I was worried the La Tuna fire was going to be a problem for you. My son was on the fire lines for a few days. How is your air quality?

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  7. #164
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~ Thanks for the link. That looks like promising therapy. I wonder how many cancer patients can afford to leave their homes/jobs to go there, and pay for accommodations, food, etc.

    Tamie ~ We are quite a distance from the La Tuna fire, and our air quality seems to be fine. We do notice smoke around the full moon periodically. God Bless Your Son for fighting this fire, and all other fires. May he be safe and healthy.

    How is Tyler? You? Jerry? Anything new? Would love an update.

    Jon is ill today ~ filled with fluid. Temp of 102, elevated heart rate, and fairly low SATS. I've asked our doc to request authorization for our PT to visit to work with us on Jon's lymphedema. His feet and legs are covered in weeping blisters. This is a progressive disease, and we need help, because what we're doing isn't working.

    Meanwhile, Jim is doing well.

    Thank you all for you love, support and prayers. You all remain in our prayers too.

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  9. #165
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    So glad that Jim is doing well!

    Sorry that Jon is ill. I hope you can get help in quickly and get it back under control. Keeping all the prayers going.
    Mary Grace

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  11. #166
    Distinguished Community Member agate's Avatar
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    Is Jon better now?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  13. #167
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    ((((((Hugs to All)))))) ~

    Thank you Mary Grace and Agate.

    Yes, Jon is better now. These episodes usually only last for a day, but there have been times where he's gone 3 days with lymph fluid buildup requiring O2. It's always scary.

    Weeping blisters are improving slowly.

    Our doctor has requested authorization (through Jon's Medi-Cal) for our PT to visit. Now we play the waiting game.

    Jim hurt his back a few days ago, when turning Jon, while I was trying to tend to Jon's wounds on his coccyx and buttock. Jon has trouble laying on his right side (pain), and he pushed against Jim. I wasn't able to finish the wound care.

    So, we will request John's help, which he continues to offer, to turn Jon at least once a week so we can change linens and do wound care. I've been worried that this would happen to Jim, but he insisted he was fine to turn Jon. He was fine, until Jon resisted. When John turns Jon, Jon resists less because John's hold is more secure than Jim's. And John is strong and can push back a bit.

    Jon's new program case manager visited yesterday, and all went well. She was very nice, kind, and compassionate. That's a relief, and I'm glad it's over. I cleaned the house stem to stern for days to prepare.

    Thank you all for your continuing support, love and prayers ~

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  15. #168

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    Dear Rose,

    Happy to hear the home visit went well. You have been through multiple case managers through the years! We have had multiple case managers also. They never stay because of low pay and high client caseloads.

    Continued prayers going up for all of you!

    Marcie

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  17. #169
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    ((((((Hugs to All)))))) ~

    Thank you for your prayers, Marcie.

    Jon is in two programs, for which he has case managers, and the turn over rate in both programs is astonishing. Yesterday's case manager said, "I love my job, and I'm not going anywhere for the rest of my career." She's only in her 20s. Betcha that changes! You are so right about the low pay and absurdly large caseloads. This speaks volumes as to how the System views our children.

    How are things with you? Hope that all is well. Would love an update!

    Love & Light,



    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  19. #170

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    Things are well at my house. Jonathan started Community College last week and seems to be settling in. My other 2 kids are doing well. My oldest is a school teacher in Queens and my middle guy is in his 2nd year of college.

    We have run into a Medicaid glitch and nys cancelled Jonathan's Medicaid last month and we didn't find out until Monday. Jon is on a waiver program so that will help. SSI kicked him off last year because of income. He's had Medicaid since he has been a baby. NYS mailed the forms to our old address from 9 years ago. They had our current address but they never updated anything. Now we have to go through the whole process to get his Medicaid back. It's his only insurance and his medicine costs over $2,600 a month. I hope the process doesn't take that long. I don't have that kind of money. What a mess. I work full time and it is very hard to get to social services. It's never easy for our family. If this gets dragged out, I will be contacting my state reps to help out with jon's Medicaid problem.

    Aren't you glad you asked? (Hahaha)

    Marcie

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