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Thread: Jim's Update

  1. #171
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    Rose, Thinking about you this morning. Praying all is well...

    Mary Grace

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  3. #172
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    Rose - My heart goes out to you - I do hope that Jim gets what he TRUELY need instead of BS - I am all too aware of how hospitals are - they want to prolong you for the money - I mean no offense but that is what it is. When my beloved Cynthia was dying with no chance of recovery, they wanted to put her on a ventilator. I said NO - I wish you and Jim all the best and you are in my prayers.
    Blessings
    Skypilot Steve
    PS - I said no because she had a living will (thank God) and we had talked about just such a situation.
    God bless you both
    S.
    Last edited by alex44; 09-18-2017 at 11:03 PM. Reason: Addition

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  5. #173
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Marcie ~

    Oh dear! I'm so sorry this is happening to Jonathan! $2,600/month is quite a lot for meds ~ what is he taking? It's absolutely shameful how government programs like SSI and Medicaid treat people. They're just numbers on forms, not human beings to these agencies. I'm praying that this gets ironed out very quickly. I know the stress this creates.

    Wow! Your boys are all grown up! How wonderful that they are all successful and doing great things. I know you are very proud of them.

    Please update us on the Medicaid debacle.

    Mary Grace ~

    Thank you for your prayers and positive thoughts for us, as always. We are truly grateful.

    Steve ~

    Thank you for your concern and prayers. Jim is getting all that he needs through Medicare, thankfully. Jon, on the other hand, has to wait for Medi-Cal to authorize services and supplies to meet his needs, like the PT to address his lymphedema. And Medi-Cal has denied him life-saving supplies, like his G Tube feeding formula in the past. That's where our battles are now.

    OUR UPDATE

    Jim has a Navelbine infusion on Thursday. Next week, he has a CAT scan. On Oct 5, he sees Dr. P, has another infusion, and Dr. P will determine where we go from there. She'd prefer not to keep him on Navelbine for too long.

    He is doing very well. Maintaining his weight, good appetite, all vitals are excellent. Yesterday, he took a walk in our neighborhood for the first time in over a decade. His leg muscles have atrophied from lack of exercise, so he's working on building them up again.

    Jon has a temp and fluid overload again tonight. We are still waiting on the authorization for his PT visit. His nurse will visit next week for his cath and trache change. We're also going to do a complete blood work up, as he hasn't had one this year yet.

    My blood pressure escalated earlier this month. I'm fairly certain it was the result of sleep deprivation, as I've been going to bed about 3-4 a.m. every morning for 9 months, and it caught up with me. (I wake up at dawn, because my body clock sounds the alarm.) Jim is now sleeping early evening, wakes up, we eat, goes back to bed, and gets up about midnight, so that I can go to bed. That has really helped me. I'm actually sleeping long enough to have dreams!

    I've also reduced my sodium intake, and increased the distance of my morning walks. I'm eating oatmeal with blueberries and almond milk every morning, instead of not eating until noon or later. Taking Kyolic (garlic tablets) and CBD oil capsules.

    All of this is working, as my BP is now normal. I take it frequently throughout the day and night, and I'm relieved that it is now in a healthy range.

    Thank you all so very much for your love, prayers, friendship and support. Our prayers are with you and your loved ones every day.

    Blessings upon you all ~

    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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  7. #174
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    So glad Jim has been doing well and that your BP improved as the BP issue could have been dangerous. Why is Jon not allowed on Medicare?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  9. #175
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    This is so troubling, Rose--that you and your family are having to fight so hard just to secure life-sustaining supplies and services for Jon. This should not be happening.

    So glad you're keeping yourself in good health in every way you can. You must feel that you're swimming against the current all too often, what with the battles over who will agree to do what and how it will be paid for, etc.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #176
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I'm not sure whether Jon is eligible for Medicare. It has never been mentioned to us as an option by any of his case workers. Perhaps I should ask and/or investigate that as a possibility. Thank you for mentioning this.

    agate ~

    Yes, the System is a major factor in my stress level and has been for 47 years. Many times I feel like Sisyphus, and that boulder just keeps sliding down the incline against me. Now, the GOP is trotting out a new repeal and replace bill, and of course, Medicaid is on the chopping block.

    I have always thought that Medicaid is too large of a catch-all, and that it should be refined to have separate categories. People with disabling conditions need more medical care than healthy, young poor folks, as long as the healthy young poor folks receive proper preventative medical care and living conditions. I'm not an expert, but even I can see that the Medicaid program is deeply flawed. Not from fraud, from systemic faults. But those faults aren't being addressed. The program is seen as too expensive, so the GOP's answer is to slash funding or give states block grants. Not to fix the flaws, but to decimate the funding.

    Every day, I worry about what we're going to do if Medicaid is destroyed by these legislators, who have Cadillac insurance on the taxpayers' dime. It infuriates me.

    We can call, write letters, put pressure on them. But we shouldn't have to do that. We shouldn't have to beg them for our lives. And that's exactly what I'm doing every time I advocate against these proposals. I should just start my letters with, "Please don't kill my son."

    That's a big part of my BP issue, believe me.

    Thank you all for your love, prayers, and support.

    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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  13. #177
    Distinguished Community Member agate's Avatar
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    I've been hearing about the block grants and they make me shudder. The states aren't known for their generosity or integrity when it comes to distributing money. I'd feel much better about Medicaid if--but why go on? As you say, it's on the chopping block, and that will be very sad.

    I agree with you that Medicaid is the umbrella for too many categories of people.. People with chronic neurological disorders who need extra medical attention are in a special situation. The disorders go on and on, and yet people who have them need to have some kind of a decent life, free from worry if possible, and yet on top of coping with the physical problems they have, they have to wonder where the money is coming from and whether they can afford to have a medical treatment or assistive device that their doctors recommend. And if they land in a care facility, where will the funds come from for that? If there are no funds, will they be out on the street, hat in hand?

    Yikes.

    These worries are too severe for someone who already has had so much taken away.

    I hope some ways of easing your life and Jon's and Jim's can be found. Soon.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  15. #178
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    I truly hope for the best for your family Rose, I hope this latest attempt to kill the health care system, which it would do , goes down in flames. per TOS, I will keep my political views to myself, but, if congress got the same benefits WE do (Medicaid,Medicare) I do not think they would feel the same. Blessings to you and yours, You are all in my prayers, and I will pray that things get better for you.
    Blessings
    Skypilot Steve

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  17. #179
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I'm not sure whether Jon is eligible for Medicare. It has never been mentioned to us as an option by any of his case workers. Perhaps I should ask and/or investigate that as a possibility. Thank you for mentioning this.

    agate ~

    Yes, the System is a major factor in my stress level and has been for 47 years. Many times I feel like Sisyphus, and that boulder just keeps sliding down the incline against me. Now, the GOP is trotting out a new repeal and replace bill, and of course, Medicaid is on the chopping block.

    I have always thought that Medicaid is too large of a catch-all, and that it should be refined to have separate categories. People with disabling conditions need more medical care than healthy, young poor folks, as long as the healthy young poor folks receive proper preventative medical care and living conditions. I'm not an expert, but even I can see that the Medicaid program is deeply flawed. Not from fraud, from systemic faults. But those faults aren't being addressed. The program is seen as too expensive, so the GOP's answer is to slash funding or give states block grants. Not to fix the flaws, but to decimate the funding.

    Every day, I worry about what we're going to do if Medicaid is destroyed by these legislators, who have Cadillac insurance on the taxpayers' dime. It infuriates me.

    We can call, write letters, put pressure on them. But we shouldn't have to do that. We shouldn't have to beg them for our lives. And that's exactly what I'm doing every time I advocate against these proposals. I should just start my letters with, "Please don't kill my son."

    That's a big part of my BP issue, believe me.

    Thank you all for your love, prayers, and support.

    Love & Light,



    Rose
    You're welcome. Yeah look into that. I have been told that most disabled people in Jon's situation can get Medicare but I am not an expert.

    I'm not going to go too deeply into the politics here either but I think from the GOP point of view, by cutting funding they get these programs to prioritize the funds they do get and "the system" shrinks therefore becoming more manageable. Whether or not you agree is up to you. I'm not going to say that's right or wrong on here but I think that's the thought process. Being a product of the school system,where they also need to better manage how funds are spent, I agree with your categories idea.
    Be careful not to let politics ruin your BP!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  19. #180
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    ((((((Hugs to All))))))~

    Thank you agate, Steve, and funnylegs4 for your perspectives on the current health care bill.

    I've been dealing with the System for nearly 50 years, and I have chewed my nails down to the knuckles many times over proposed budget cuts by the state to all of the programs, which serve Jon and his peers. Reams of letters I wrote to our legislators and the media are in boxes in our garage. I don't know why I'm keeping them. Maybe as a testament to my life's work as an advocate.

    Block grants would utterly destroy Medicaid. When the money is gone, it's gone, and those in need will suffer and, yes, die. The states don't have access to more funding within the states' budgets. States will also have the option of providing less or none of the services. Medicaid is a federal program, and it needs that umbrella to survive.

    funnylegs4 ~ the System won't shrink and become more manageable. The bureaucracy will remain the same. With less funding, logically, less services will be provided to Medicaid recipients. There certainly will not be any streamlining of the bureaucracy.

    I'm still waiting for the authorization for Jon's PT to address his lymphedema. Jon is a palliative care patient. Uncontrolled lymphedema can be life threatening. But he can't even get approval for ONE visit. And that is now, before a new health care plan takes effect, so imagine what will happen if this bill passes.

    Pre-existing conditions are also off the table, or if insurance agencies agree to provide coverage to people with pre-existing conditions, the consumers will have to pay higher premiums.

    Unfortunately, politics is an integral part of our lives, particularly those with disabling conditions, because everything revolves around government support. Medicaid, Medicare, Social Security, the IHSS program, the Regional Center ~ all government agencies/organizations. Our health is extremely, inextricably related to politics.

    And the poor, disabled, and elderly are always the first to be discarded and devalued in the budget process. These are facts, based on my life experience.

    If this bill passes, Jon's IHSS program will be in jeopardy, along with all of his life-giving supplies (G Tube, trache, catheter, colostomy) and home health care. I am terrified every time this repeal and replace stuff comes up, because I fear for Jon's future.

    Naturally, my body responds to this kind of stress. I can't ignore these possibilities and not worry about them becoming reality. I have to be prepared.

    After almost a half century of battling the System and legislators with hidden agendas and no compassion or concern for the most vulnerable among us, I'm exhausted and fed up. I am tired of begging.

    Many organizations have expressed their opposition to this latest health care bill, like the AMA, March of Dimes, and other disease-specific organizations. So, I'm not alone in recognizing that nothing good will come of this bill if it passes.

    If we're the greatest country on Earth, why don't we have a health care system, which provides for all of our needs, and which doesn't discriminate against anyone?

    That shouldn't even be a question.



    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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