HEALTHCARE NO LONGER INSURABLE, BIPOLAR AT 68

ACA/Medical 2015/Insurance/Bipolar
by – Sheri de Grom

An irony of the Affordable Care Act (ACA) is that millions of people have gained access to insurance but their deductible is so high that it’s left them uninsured.

Providers are reporting the largest increase in bad medical debt for people with insurance since the great depression.

Insurance has always been purchased to cover loss. The Affordable Care Act turned healthcare upside down and we see the unfortunate results daily. Healthcare is no longer insurable.

The truth about the ACA is that a high percentage of enrollees have plans with elevated yearly deductibles. The amounts are so high, people report they are still uninsured because they can not meet the deductible.

The rise of high-deductible plans is driving the rise in medical debt. The average deductible for a single person enrolled in an employer-sponsored healthcare plan reached $1,217 in 2014, a 7% increase over the previous year. By 2019, providers could see a 50% decrease in the amount of revenue they will be collecting directly from patients. Thirty percent of that amount, or as much as $200 billion will be written off, according to industry forecast.

Healthcare providers once considered individuals with insurance to be low risk for bad debt. Today, those without insurance are being joined by individuals with high-deductible insurance and they now owe thousands of dollars in medical debt.

New patients are routinely asked if their policy was purchased through the ACA marketplace or if it is employer-backed. If the answer is ‘marketplace’, the patient is often turned away. The medical practice understands the marketplace insurance comes with high annual deductibles and high co-payments regularly leading to uncollectable debt.

Hospitals and physician groups alike are learning they must approach debt collection in a different way than in years past.

Small physician practices do not have as much room for give and take negotiating debt with their patients. They want to maintain the personal touch but the Affordable Care Act has taken away what were once physicians practicing medicine with that hometown touch.

Hospitals and large medical clinics are learning from retail about collecting bad debt:

  • Keep bad debt in-house. Once a collection agency is involved it can cost as much as 33% of any unpaid balance for the agency to manage the debt even if collections are unsuccessful.
  • Pre-screen patients with a short financial form for any service over $250. Reach a payment schedule before treatment and the first payment before the treatment.
  • Try to establish a conversation with the patient regarding their bad debt. Studies have shown the patient will pay part of their bad debt when treated with kindness and understanding.
  • Always when attempting to collect a bad debt, give your employee the power to negotiate the bad debt. It’s better to get $500 cash today than to never collect the $2,500 due.

Collection prospects decreases as medical debt increases. The shocking reality is healthcare providers today are collecting $0.18 to $0.34 on the dollar from patients with high-deductible plans. Once a bill exceeds 5% of household income, a patient’s propensity to pay drops to zero.

You, your families and loved ones have the right to appropriate healthcare. We all must meet our financial obligations but we all deserve to be treated with human dignity. When illness strikes, we all need that extra touch of kindness.

The latest fallout of the Affordable Care Act, on a personal level for me, is that my internist has decided to retire at the end of the year. In his words, “The Administration, Congress and the Supreme Court do not know my patients or how to care for them, medically. I’m the doctor and you are my responsibility. I can no longer care for you in the way I believe is best for your health.”

In the past 40 years I’ve only had one internist I liked as much as the one I’ll have until the close of 2015. They both saved my life with their excellent diagnostic skills. However, I understand the continuing frustration my current internist faces daily. It is indeed maddening. He was recently elected as the best internist in a 21-state region by his peers. I would have gladly added my affirmative vote.

Thank you for your support, friendship, love and the many prayers you bestow upon Tom and I daily.

Many of you have become like family to me and I cherish the notes that arrive by e-mail [even if I don’t answer immediately], the cards that arrive by mail, and telephone calls as if you know when I need them the most. You always ask about Tom and of course the story of how we’ve survived all these years with his bipolar disorder has been the primary focus of my blog from it’s inception. For years I asked psychiatrist for books, journal entries or anything I could read so I would know what to expect from his bipolar disorder as we entered the afternoons of our lives. Now I understand why nothing had been written all those years ago. THE DOCTORS ALL EXPECTED TOM WOULD BE DEAD.

An update on Tom’s health: He’s still bedridden many days due to any number of diagnoses playing havoc with his body. However, on the days he’s able to be up and about; he is able to do so by using the walker.

After 7 months of being mis-diagnosed and having such horrific pain on the bottoms of his feet, we have a new rheumatologist that correctly diagnosed psoriatic arthritis. Unfortunately the oral medications didn’t work and he’s now on a schedule of infusions. We recognize the risk involved but when he feels up to walking, he can do so as long as he has the energy.

The horrendous coughing I talked about in my blog of Aug 30, 2014 may have finally met its match in a new Pulmonologist who continues to work with us. He’s definitely a keeper for Tom’s medical team. The coughing hasn’t stopped but, we now know how to treat it and Tom doesn’t spend the night sleeping on the bathroom floor.

This doctor did much testing and by placing the pH probe for gastroesophageal reflux at the entryway where food leaves the mouth and starts the beginning of its journey to digestion, he was able to determine the initial cause of Tom’s coughing. Tom’s had dozens of pH probe tests in the past but they all read negative because the probe was placed much lower, as is normal for other patients. [Let’s face it, there’s nothing normal about Tom’s body].

Tom has never had any of the symptoms of Gerd or Reflux disease. This is the same as he’d never had chest pains but he was still on the edge of dying from a 100% left bundle blockage of the heart. For me, Tom’s caregiver, I have witnessed years of Diagnostic Overshadowing, which I talked about in my blog of Aug, 30, 2015. As a result of the coughing not being diagnosed and the Gerd not being tested properly and diagnosed, Tom’s trachea ‘(windpipe) the airway that leads from the larynx to the bronchi, which are airways that lead to the lungs’ don’t function. He has developed tracheal stenosis as his trachea is shredded from top to bottom. Twenty-five years of coughing and extreme acid causes Tom’s trachea to collapse without warning and when it does, he must have immediate help. HE CANNOT BREATHE.

This new development has caused a complete shift in my caregiving and I’m learning as I go. Every day I thank God that I can help.

His daily intolerable migraines have become severe and include projectile vomiting, sensitivity to light and all that most of us with migraines know as the major symptoms. His heart problems complicate his migraines and their treatment. We are trying some herbal remedies and I’m open to any non-narcotic suggestions.

I can honestly say Tom’s medical issues are no longer about being bipolar. The physical illnesses attacking his body are a direct result of diagnostic overshadowing. Bipolar disorder is one of his 32 diagnoses we worry the least about. However, we still keep occasional appointments with his masterful psychiatrist.

Until next time, love to all. My blogs have been further apart this year because my responsibilities at home have increased a thousand fold. I have massive amounts of paperwork to prepare both Tom and I for the next phase of our life. However, I hope to be around to pop in with a blog here and there. I’ll also do my best to keep up with reading and commenting with you. I do love our conversations.

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About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
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85 Responses to HEALTHCARE NO LONGER INSURABLE, BIPOLAR AT 68

  1. dear Sheri~
    You are a courageous and noble woman…your story is deeply beautiful and also full of pain—I read many of the responses you have had to this blog entry. Poor healthcare is pervasive in our society–I have experienced it myself, but to a lesser degree than what you are enduring and so many of your readers. Like so many programs in our society, wealth determines what you will received. I was listening to NPR yesterday—about the unfair tax structure—and then about Prisons for Profit—–our value system has gone to hell! It was obvious to me from the callers, that WHAT ABOUT MY POCKETBOOK seemed to be the biggest concern, rather than WHAT ABOUT MY NEIGHBOR. I have nothing to offer you, but my love and hugs for you and Tom—You are a great woman and Tom is a gift——-YOU have a beautiful friendship in your marriage!
    The BEST to you!
    Jane

    • Jane – Hello – Thank you for stopping in to read with me and it’s wonderful to see your comment. Tom is so very ill, physically and tomorrow I’m faced with selecting a nursing home/rehab location that will accept him. I’ve never been backed into this corner before. Could I just say again, I HATE MEDICARE. If I could throw away the Medicare and simply use my Blue Cross/BS I wouldn’t have such a hard time. It would be hard enough but not as bad . . . . he’s far too sick (medically for me to bring Tom home). I don’t have the knowledge to take care of all his new diagnosis as well as the physicial therapy he needs.
      Sheri

      • hello, Sheri…this is the toughest part yet of your experience…but you are doing the correct thing. You need the help for Tom. I hope that you have people around to support you in your continued care of Tom. I am here to listen…that I can offer you.,,and my prayers for your strength and that others will be open to what you need from them. Hugs!
        Jane

  2. I have been misdiagnosed in Canada for so many times, that it would be hilarious if it only would not have such terrible aftereffects, and it’s impossible to find a family doctor nearby, I don’t have one for a year now. Well, basically I’m left on my own. The last specialist told they could not do anything. That’s a really attractive treatment option. We have extremely developed treatments for people who can and are willing to pay directly for very complex surgeries which would take a long recovery time, but since it’s supposedly covered in Canada, the answer they give is: let’s just see what happens if we do nothing. Much of supplies I’m using on a daily basis is not covered by OHIP, so I am spending most of the little amount I can earn when I feel acceptably on medical supplies and medications. Not to mention all the frustration and pain. Health care in Europe can do a lot more, but it’s cost is extremely high, so that excludes any chances to get it. The gap between health care provided to people with no income, low income or very high income is insanely huge. It is bad when somebody is aware there is an available treatment, but they cannot receive it because of country’s policies or high cost to patient.

    • Inese – I’m so sorry you are having such a hard time getting the care you need. In the March issue of New Scientist, a special report about the future of healthcare was presented. The study focused entirely on National Health Service and I’ve hung on to the article as I eventually want to blog about the statistics.
      In the meantime, I fully believe you are not getting the treatment you not only need but deserve. Medicine should not have to do with how much money you have but, unfortunately it does.
      Here in the U.S., it also matters how much money you have or on what type of insurance you have. My husband needs to see one of doctors that’s on his team and the first appointment I could get, although this doctor is one of the doctor’s that’s been on Tom’s team for over 9 years, is Feb. 4. It’s issues such as this that drives us to the ER when we shouldn’t have to go there. We have full pay insurance and we still can’t get the appointments we need when we need them. I often believe the primary problem is getting past the nurse.
      The article I refer to in ‘New Scientist’ addresses the very issue of INEQUALITY in the National health Service. They wrote, “If the low rates of cancer seen in the richer portion of UK society were replicated acros the nation, 19,200 fewer people would die each year. It is a shocking statistic, and one that isn’t restricted to cancer: across almost every measure of health, those with less money get more disease.” Another headline in the article reads, “Tackling health inequality means tackling wealth inequality but politicians lack the courage to do this.” I believe this is true for all universal provided health care and the #1 reason I don’t want universal or socialized medicine in the United States.
      I thank you for commenting, although I dislike the fact that you are suffering needlessly.
      Sheri

  3. This post got lost in the shuffle. I’ve been busy and very tired all the time. It would be impossible to pay my daughter’s medical debt. It is many thousands of dollars. If I sold everything that I own the debt still would not be paid. Government is now trying to shave her to Medicaid and she takes a RA med that costs thousands of dollars per injection. I don’t know what is going to happen next.

    This is a good post always. I’m in complete empathy with you and Tom.

    Take care and I do hope that Tom will get some relief soon.

    Hugs to you, Sheri,

    Yvonne

    • Yvonne – Hugs back to you, my friend. I hear you about the fatigue. This business of 24/7 caregiving has me exhausted most of the time. I have, however, come to the conclusion that I must have another dog. Prissy was the only reason I smiled many days and she was the only ‘person’ I had to talk to for days on end. Of course it will be another rescue around 8 or 9. Life isn’t the same without having a fuzzy face to keep me company. I’ve had a dog since I was 6 and life isn’t complete without one.
      Tom made the comment the other day that he missed her laughter. Honestly, she was always smiling. She had a wonderful disposition.
      I understand about your daughter’s medical debt. We would be on the streets if I hadn’t had the sense to stay with government and keep my BC/BS after I retired. It’s expensive but we have almost 100% coverage. Tom’s infusion for his psoriatic arthritis alone is $4,000 plus.
      The current infusion medication isn’t working properly and there’s another one they will try and it’s even more expensive. The doctor slipped and said, “Oh, wait. You’re over 65 and your insurance won’t pay. No, wait. You’re the one with the good insurance. Never mind. They’ll pay.” I knew right then that if we were on Medicare with a supplement, Tom would not be getting the new infusion medication because he’s 68!
      There’s something wrong with this picture.
      Take care of yourself and gentle hugs until we talk again. I’m not on the blog as much now that I’m taking care of Tom 24/7. Love to you and yours.

  4. Ileana says:

    PENTRU TOTI PRIETENII MEI MINUNATI O SEARA SPLENDIDA DE IARNA SI CU MULTE BUCURII ALATURI DE CEI DRAGI !
    To all my friends SPLENDIDA WINTER wonderful evening and much joy with your loved ones!


  5. kkessler833 says:

    Thank you for the informative post. I had no idea insurance costs were this bad right now. I hope I don’t find out due to any severe illness in my family. I hope your very difficult situation with health care and your husband improve. Don’t know what else to say.

  6. There are no clear cut or simple answers, so I respect you if you disagree with me, but I am an advocate for universal health care. We don’t have to start from scratch. Many countries have paved the way, and can teach us from their mistakes.

    The other problem you write about, the shoving aside of the sickest, the elderly and of people with mental illness is shameful, and ties to shoving aside the poorest, denying them good schools, safe neighborhoods, access to decent grocery stores, living wages. All of it must stop. We are a rich country, with an abundance of resources, and the freedom to speak out. We must find ways to move all of us forward.

    Thinking of you this holiday season, as the two of you shoulder this incredible burden. Thank you for bringing yours and Tom’s story to all of us.

    • I have respect for someone who’s willing to disagree and say what they believe is a better alternative for our country to pursue.
      I believe it was Scientific America that led with an extensive article on the state of health care in several European countries and it’s not as rosey as some would have us believe. I tore the article out of my magazine so once I complete the project I’m working on for Tom and I, I’ll get the article and give you the date.
      Many of the presidential candidates are taking credit for the Washington DC Police Chief’s statement that in the case of danger, realize they can’t get there in time to help you so you should run as fast as you can and hide the best as you can. I admire her for telling the truth to the citizens of DC instead of pretending someone will always be present to protect them.
      I strongly believe we all must learn how to care for ourselves before we can expect anything to change for the better.

      • I agree. We are designed for happiness, but also for stress. Challenging ourselves is part of what makes us healthy. Learning to care for ourselves is one of the biggest challenges.

        Read a lot about health care in Canada and western European countries. It isn’t all roses, I know. You wait for surgeries. In France you bring your own sheets. That kind of shift would be really hard for all of us. Still, I had to be hospitalized in Great Britain, and oh my goodness, it was a wonderful experience. The recovery room had several others with me, the hospital didnt look like a ski lodge, but the care was excellent.

        In countries with national health care, there is a resilience I don’t see here. When a case goes bad, there aren’t huge loss suits and finger pointing. Teams figure out what went wrong, and take care of it.

        My husband started out his anesthesiology practice thirty years ago as a staunch opponent of single payer health care, and made a complete about face during his career. It was pretty amazing.

        That said — I’m wrong all the time, and am open to anything that works. Cheers —

        • I’ll agree, if something works and it works equally for all, let’s go for it. Unfortunately there’s so much distrust in our country, I’m not sure we can ever make it happen.
          Have you read ‘Where Is The Mango Princess?” by Cathy Crimmins? Her husband suffered a terrible brain injury in a boating accident in Canada. She raves about the wonderful healthcare they received in Canada but when they were forced to return to the states and their HMO took over her husband’s case, she compared it to being handed a chainsaw to handle his complex surgeries on her own. It’s an excellent read.
          I understood how she felt because the first year we were in DC, I decided to try the HMO version of BCBS. It was much cheaper than our regular plan and it didn’t take me long to find out why. We were out-of-pocket $96,000 and change for Tom’s medical care that year! Needless to say I don’t feel warm and fuzzy about allowing someone else to manage our healthcare needs.

  7. cindy knoke says:

    Oh Sheri, sending you and Tom love and empathy. Life is of course, so unfair.

  8. GP Cox says:

    I know the holidays are rough on you, but being a vegan, thought you’d get a kick out this – have a few more for an email – want to give you a smile!!

    • Indeed, a smile it is! Thank you, my friend. I’ve had myself glued to the dining room table (with the added spacers hooked in place) working on the paperwork necessary for phase #1 of our claims material. Our doc on Friday saw what I had put together (while it was still in my lap) and before I could say a word, he asked me, “How may I assist you?”
      My evidence was indexed, cross referenced, medically mapped and coded with Tom’s medical records as evidentiary material for the past 10 years. Friday was a victory. He wrote exactly what I wanted on his form. I had high hopes of delivering this first package to the powers that be this coming Monday but I’m not going to kill myself. I still have a lot of work to finish before I feel it’s complete to my satisfaction.
      Thanks for the smile.

  9. This is very disturbing! The unintentional consequences of good (?) government intentions.

    • Hi, John. It’s been a very long time since we’ve had good government, in my opinion. I don’t want to believe that we’ve gone so far backwards that we’ll never be able to turn ourselves around. I refuse to subscribe to the ‘end of the world’ philosophy so many are talking about for our country. I simply can’t go there in my head. Do you think I’m being naive? You don’t have to answer that, my friend. You know me well enough to know a lot is wrong and I’m aware of it but I still cannot subscribe to that future for our generation or the next or the next after that.
      I will never agree socialized medicine is the answer to our healthcare crisis nor is Obamacare. However, I will agree that we do have a crisis.
      Tuesday I realized how very real that crisis is when one of Tom’s doctors looked at me and said, “Wait, I can’t prescribe that drug, Tom’s over 65!”
      You know how well I responded to that.
      The reality is that if I hadn’t kept my insurance that covers our pharmacy [which I pay for out-of pocket, but at least I have the choice of rather I want to have the coverage or not] I could not have countered the doctor with, “It doesn’t matter if Tom is 102, he WILL have the medication and he WILL have it starting today.”
      I don’t know what the solution is but there has to be one. If Tom hadn’t at least been given the chance to try the medication, I wonder how many days would he have lingered in ICU before dying a painful death? I’m going to be Scarlet O’Hara and think about that tomorrow [or not]!

  10. Lignum Draco says:

    The health insurance situation sounds horrendous. I hope it never comes to that here.

    I wish there was something I could say or do to help you and Tom, but there isn’t. Except that I’ve been through a similar battle supporting my mother. You aren’t alone and have my support and empathy from afar. I wish you both well.

    • Health insurance for individuals who’ve worked hard all their lives and for whatever reason or another didn’t find satisfaction in one position for an extended period of time wherein they earned retirement benefits or worse yet, their employers laid them off in their late 50’s are hit the hardest. With the down turn in the economy, we’ve seen more and more of that happening in the United States.

      It’s the baby boomer generation [Vietnam era if you will] who believed if you worked hard you’d be able to support your own needs. For so many – that’s not true and it’s happened because of Obama Care and the housing market crash 10 years ago. The middle class, the working people, have never recovered. You’ll read and hear otherwise but it’s not true.

      Tom and I are fortunate that I had the foresight to hold on to my federal health care insurance even after I retired. Yes, it cost me a lot of money but I receive a lot in return. If I had dropped the insurance, I’d never have been allowed to re-enroll, once you stop, you are never allowed back in. That insurance is the difference between life and death for Tom at the present time. It’s been that way many times over the past 25 years. It honestly is the best decision I’ve ever made on our behalf.

      At the present time, 3 of the medications he’s on would not be approved by any other insurance company for someone over the age of 65!

      There’s many reasons our healthcare is in the position it’s in but I’ll save that for another blog. For now, I’ll just say, there’s no free ride and many have been having that without having to pay for insurance or for the medical care they receive and since they haven’t worked — they’ve never paid taxes. It’s not that they can’t work, they would rather live off the rest of us! [I recognize that’s a generalized statement to many but the statistics are staggering].

  11. You have a big load to carry Sheri but how wonderful that you Trust in God to help you carry it and He will shoulder what you can’t and give you the strength to endure even when the going seems too hard to cope with, He is never far from us, of that we can be assured.

    Isaiah 43:1-3 – Do not be afraid Sheri, for I have ransomed you. I have called you by name, you are mine. When you go through deep waters and great trouble Sheri, I will be with you. When you go through rivers of difficulty, you will not drown Sheri, when you walk through the fire of oppression, you will not be burned up the flames will not consume you. For I am the LORD, your God Sheri, the Holy One of Israel, your Saviour.”

    Lamentations 3: 33 For God doth not afflict willingly nor grieve the Children of men.

    Christian Love Always – Anne.

  12. inesephoto says:

    Good day Sheri, haven’t heard from you a while. Glad that Tom can use his walker from time to time.
    It is saddening that health care is in such broken state. People are lied to by the government every single day.
    You take care. God bless.

  13. Pingback: HEALTHCARE NO LONGER INSURABLE, BIPOLAR AT 68 | By the Mighty Mumford

  14. Thank you for all your advocacy and educating on the issue of health care and health insurance. It’s truly a tragedy that people cannot afford health care. Our country needs not only educated citizens, but healthy citizens. Seems pretty basic to me.

    • Kitt – Thanks for dropping in. You are the best with your advocacy and education for mental health and because I’ve worked so much with insurance legislation, I thought I’d advocate on a broader scale for awhile and talk about insurance in general. and hopefully that would cover a broader audience. However, mental health advocacy will always be my #1 target along with advocacy for Veterans. I hope to blog and work on legislation for Parity in the new year. So many in Congress and the administration believe we already have Parity in mental health but so many don’t. I fought the battle in the late 80’s for all Federal insurance plans and along with the help of the late Senator Teddy Kennedy [strong advocate for mental health] we made it happen. It’s past time for all insurance policies to offer parity if they want a stake in the game.

  15. ksbeth says:

    you are amazing, sheri and embody resilience on the highest order. the insurance issue is inexcusable.

  16. rabbiadar says:

    Sheri, I learn so much every time you write. I can’t offer anything but my prayers but you and Tom have those aplenty.

  17. lbeth1950 says:

    Sheri, I don’t want to lose contact with you. Please keep following me.

  18. Pingback: The ACA and buyer remorse | All Things Chronic

  19. Patty B says:

    Sherri, I have said this before but it always bears repeating – you are an incredible strong and courageous woman. You have been to war with the red tape and generous in your knowledge for others to learn. I know I have not been in touch but you have been in my thoughts (especially when I color!) and in my prayers. I lift you and Tom up often. I know it is in the power of the Holy Spirit that accomplished so much. Thanks to you I stay on top of my insurance, copays, deductibles etc…and it makes dealing with my doctors/hospital etc a better experience for both me and the providers. My doctor no longer has hospital privileges and has kept his small town practice, but is around me age and I know retirement may not be far off. But he always refers us to specialists that he knows will care for him. Actually my pulmonary doctor’s office know him well, that speaks volumes to me. Because of my little health emergency (all is well now!) I already met my deductible for Tri Care and the year just started usually I met it in Jan – I have a feeling I may reach my catastrophic cap this year. Thank you again for teaching all of us to take control of our health care!

    • Hello, Patty and how nice to see you. Yes, I think of you often and wish you were next door or across the street and perhaps we could have a cup of coffee or maybe be part of a book club together.
      I’m already running into a road-block in finding a new internist. I want to stay with the same medical complex as most of my specialist are with the same organization. Doctors’ are saying no to Medicare patients. I’m going to have to get serious about my fight to have Medicare not be mandatory for those of us that don’t want it. Not only does it cost us over $200 a year, it keeps us from having the best medical care because the best doctors don’t have to accept it.
      I spoke on behalf of Veteran’s Caregivers at a conference in Sep and as a result the head of Disabled American Veterans approached me and asked me about Tom’s disability, etc. We talked a good long time and he encouraged me to gather Tom’s medical records and go back and ask for his records to be reviewed for an increase in his disability as it related to his military service.
      I’ve been working on requesting medical records, asking and paying for doctors to fill out forms, compiling supporting documentation, [being really mad as I read the medical records and see where doctors have been aware of major problems 6 to 8 years ago and did nothing about it and now they’ve become life threatening diseases]. Anyway, the purpose of all the work, and I’ve already been on it 2 months, is hopefully we’ll have an increase in Tom’s disability plus we’ll receive what they call ‘aid and assistance.’
      If we get ‘aid and assistance,’ that would be receiving extra funds to hire someone to do those things I can’t do and Tom can no longer do but will allow us to still live in our home. It allows you to hire whoever you want, etc. I’m praying that comes through for us. With the nerve damage to my hand and arm it’s gotten really painful for me to carry groceries in from the car and other things like that.
      Take care of yourself and stay warm. God Bless, Sheri

      • Patty B says:

        It would be a blessing to not have to accept Medicare…it has gone down hill. I am sorry you having problems finding a doctor it is happening here too from what hear and as I get my EOB seeing how much Tri Care is giving my providers I have a feeling I may be losing doctors too. I am amazed at how little they are now getting. Politicians have been wanting to destroy this country for years and I think they have succeeded with medical costs, financial, freebies, greed as squander all of our money one programs that don’t work.
        Since you posted this, any luck?
        I hope and pray you can find the strength you need to go up against this system.

        • Patty – Happy holidays to you. I agree everything seems to be falling apart. I haven’t had a chance to look for another internist that meets my requirements. Several of my specialist know that I’ve lost my internist and he referred me to most of them, so feel confident they have my back for now.
          I’ve been up to my ears in paperwork for the VA for well over a month and it will continue for at least 2 or 3 more months. Along with taking care of Tom and getting him to his various appointments, I haven’t had time for much else. Hugs, my friend.

          • Patty B says:

            I am sorry things are so stressful for you. I remember you in my prayers and think of you often when I color! God bless you and Tom and prayers for everything to work out for you both.

            • Thank you, Patti. Have I told you, I’ve pulled the coloring books back out and have been coloring most evenings about an hour. It helps with the stress factor better than most anything else I do and I can still be close to Tom.
              I’m currently burried in Tom’s medical records in hopes of receiving some caregiving help. If you know of anyone in the military community that needs Aid and Attendance and they need it–not because of after 9/ll, I’m beginning to get a handle on some of the requirements. It’s one tough puppy and like so many government programs, you don’t know what questions to ask until you’ve already made some mistakes.
              I wouldn’t have time to walk them through the steps on line but I could help them over the phone. I’m learning as I go. Once I know exactly what has to be done or in my case, not done, I plan to write a specific set of guidelines.

  20. Jane Sadek says:

    Sheri if I ever think I’m having a bad day, I just remember all you are dealing with and remind myself that I’m doing fine. I send love and prayers your way every day.

    As to insurance, I’m sure you are far too deep into your situation to make changes, but for your readers, I have a suggestion: Medi-Share. It’s a medical co-op for Christians. It satisfies the governments requirements, but for a fraction of the cost. You do have to belong to a church and your lifestyle has to reflect Christian values, but that’s who we are, so it was no stretch. Any self-insured Christian should certainly check it out.

    • Jane – I’m so happy you told me about Medi-Share. I will most definitely be passing the information along and will also put it on Facebook. Tom and I have good coverage but I made sure of that 25+ years ago and acted accordingly. Combining my federal BC/BS which I pay a premium on and his Tricare for Life – that gives us 100% coverage for almost everything. Sometimes we’ll have a few dollars for something but not often. Of course Medicare is an entirely different story and they mess up everything. We wouldn’t have Medicare but the government tells us we have to have it!

  21. GP Cox says:

    I’ll be giving this to my other-half to read as well. As always, you take care of yourself and Tom – we’ll leave a light on for you….

  22. Gallivanta says:

    So good to have an update on Tom, even if the health situation is not the best. Sending much strength and good wishes to you both.

    • Thank you so much, Ann. I debated with myself about rather I should put in a detailed update regarding Tom, but several have asked me in messages, etc. My blog is primarily dedicated to the struggles Tom and I have endured with his bipolar disorder and relaying where we are now is part of the continuing information.
      If the doctors hadn’t overlooked so many illnesses that were going on in his body when they were in the early stages of diagnosis [diagnostic overshadowing] I honestly believe Tom would be a healthy man today.
      For me, this proves the research is correct in that individuals with bipolar disorder die at a minimum 25 years before their peers.

      • Gallivanta says:

        This is a 2013 article but post hospital syndrome has been in the news again lately. http://www.nejm.org/doi/full/10.1056/NEJMp1212324 I expect it is a condition which you and Tom have had to deal with over the years.

        • Ann – Thanks for the link. You are spot on with Tom and I experiencing the issue of Post-Hospital Sundrome time and time again. I’ve printed the article as I believe it deserves a blog on my end – will have to be somewhere in the future after more research but it’s valuable information I haven’t covered before and it can be a real problem when it comes to the health and welfare of the patient, the caregiver and it throws even the best of physicians off track.
          We [as in the US are seeing more and more cases have patients discharged from the hospital to home that have become 100% disoriented to time and place while they are in the hospital. It’s so easy to lose the grip of reality when your days all seem the same. Tom and I have come against this time and time again. I now make it a point to ensure Tom has something to know another day has passed and there’s something significant about it.
          I wish I had you on my team for the case files I’m currently putting together and I’d have hired you in a heart-beat when I was working for the government. Your delivery of sources is impeccable.

          • Gallivanta says:

            You are kind! But there are lots of seemingly little things one can do to make a hospital stay less stressful, if only there were more staff and more awareness. One thing I have appreciated on my rare hospital visits is the art work in the hospital. http://www.wsj.com/articles/more-hospitals-use-the-healing-powers-of-public-art-1408404629 Apparently the benefit of artwork is now being studied.

            • Yes, I agree. Our hospital of choice has some of the most beautiful art work I’ve seen in a public space. Additionally, one of the things that I especially enjoyed when I was a patient there was the baby grand piano in the solarium. Not only did patients play but there were a number of talented staff.
              Art therapy has proven itself over and over in the clinical setting. It stands to reason, art in and of itself would have healing powers within a hospital.
              I automatically think of your blog and how much your choice of colors, form, placement, fondness for simplistic floral arrangements and so much more draw me back again and again. The artistic elements of your blog [not to exclude the other exquisite offerings] draw me back time and time again.

  23. I must admit I’m with Bernie Sanders on advocating for eliminating private health insurance and creating a single publicly funded health system that covers everyone – like they have in all the other industrialized countries.

    • Dr. Bramhall – I respectfully disagree with you on this one. I believe in the government staying out of my business 100%. Yes, I worked for the government for 20 years and that was my choice. I not only loved my job but was able to retire young enough to help Tom and pursue other interest. I don’t want the gov in my health care any more than I want it in my religion or the Department of Defense! And, heaven help us all if Bernie Sanders is elected our next president. I’m an independent btw.

  24. Great article.

    The “TAX” that is ACA may have put into place a requirement that gives everyone an opportunity to have health care, however it did nothing to address the health care and insurance system and the inflated expenses. Not surprised though, unfortunately our government has a solid track record of putting up a good facade but typically little substance behind what it does.

    One of the reasons why I have stayed at the same company for the last 9 years is how good their medical benefits are. It has been steadily creeping up each year but it could be so much worse.

    On a more important note, you are in my thoughts and wishing you some good luck, you certainty deserve a long stretch of it. Please take care!

    • Vic – Thanks for stopping by and commenting. I so understand about staying with a company for the health benefits. IMO, good health benefits far out weigh any other part of the benefit package.
      I worked for the Federal Gov and the rate hike wasn’t bad for about 15 years and then it steadily started its’ climb. However, I was in a position to help rewrite the parity laws for the federal health plans and work them through congress and that was a great plus. Parity gave us the same coverage for mental health as it did for all other illnesses and what a relief that was.
      Our biggest fight at the present time is Medicare. I know you are a long way from that stage but I still pay the full premium for our BC/BS but under the law, Medicare is billed first. I run into the old problem over and over of doctors that won’t take Medicare because the gov. doesn’t pay them anything. Before Medicare [which the government makes us have if we want to keep Tricare for Life, which Tom earned from being in the military 20 years] was around, my BC/BS paid 80% of whatever was billed and Tricare paid the other 20% and everyone was happy!

  25. painkills2 says:

    I think it’s a little shortsighted to blame the ACA for the problems in our health care system. After all, it’s not the government that benefits from the ACA — it’s the insurance industry. And when you make deals with the devil, a lot of people are likely to get burned.

    • Our healthcare system was broken before the ACA was put in place but now it’s worse than ever. Physicians are dropping out of their professions due to the government telling them how they have to practice medicine. Doctors tell me they spend more time completing paperwork for the government than they do with the patient in front of them. We already had major problems with physicians taking on Medicare, Tricare, Medicaid and other benefit programs. Now it’s even harder to get in the door of a physician’s office holding those cards.
      We can’t expect the insurance industry to accept every individual equally when every patient isn’t in the same risk category. I made my career choices based on who was the most likely going to insure both Tom and I the best and for the longest time. It had nothing to do with where we wanted to live or the lifestyle we wanted – it had to do with where I had to live if I wanted to continue my career and keep the same insurance.
      IMO, our healthcare system was seriously broken long before the ACA and now it’s in shambles.

      • painkills2 says:

        I’m not going to pretend that I understand how the insurance industry works, but as far as I know, insurance companies make money when they do accept every individual, as it disperses their risk and liability when they have the largest group of people. As it was predicted, for the first couple of years, the people who sign up for the ACA will be the ones who are in most desperate need of it — like families who have children suffering from cancer. The only way to make it affordable is if every risk group joins, which hasn’t been the case with the ACA. But it is the case with national health programs, like in England.

        I’ve had car insurance since I got my driver’s license. For the last 30 years, I haven’t had an accident or a ticket. But I know that my premiums involve paying for all the other drivers who aren’t as careful as I am on the road. Is it fair? Doesn’t sound like it. But that’s how insurance works.

        • Yes, I know it doesn’t sound fair that you still pay for auto insurance and your rates continue to go up simply because others are not as careful as you are. Aditionally, a licensed mechanic [I’m sure they don’t call them mechanic’s anymore] for Volvo, Cadillac, VW, and several other vehicles make more than family practitioners and certainly more than insurance adjusters and claims examiners.
          Everyone wants to make money and you and I want to save money. As a federal employee I paid the full amount into Medicare and Social Security plus my retirement account just like everyone else [well not everyone paid into their retirement account and they thought they could survive on what the feds were going to allot them]. Funny how that all works out. When a federal employee turns 65 their retirement is off-set by social security. It doesn’t matter that you paid into both for the past 20 years [federal for me] and 40 years combined work [federal + civilian]. Like you, it doesn’t seem fair that I worked hard for a living and saved and now the government gets to take away the money I saved.
          Then to make matters even worse, the federal gov is broke so for the folks that can’t afford to pay for their own insurance, they are financed by the money that’s in the fed employees retirement accounts. [Same way they used to rob Social Security].
          Enough of that – my reasoning is that everyone had access to medical care before the ACA via Medicaid and no one was ever turned to collection. Children and the elderly were routinely covered by each state. Now the states have closed their books [more or less] on Medicaid and thus we have the ACA and yes, many insurance companies are still operating in the red. Many insurance companies have merged and it’s frighting to me to watch United Health Care buy up company after company and now they control the health care of the majority of the population under 65 in the U.S. Your policy simply might not say United Health Care. CVS has been buying pharmacies as fast as possible and they now have the same control in the pharmacy industry.
          I hate to say it, but we are well on our way to fixed pricing and socialized medicine in the United States.
          I have names of companies and statistics and will get them to you later for exactly where different companies stand in this war on health care in America.
          Thank you for taking part in this discussion.

  26. Scary and very sad, the impact it’s having on so many. Thank you for this post.

    • Pauline – Yes, it’s very scary and it doesn’t matter what your age is or what financial bracket you’re in. Having the Insurance Marketplace has driven all insurance upward since no one can be turned away. Before, many of the ACA insured individuals were covered under Medicaid but have now been forced to the marketplace for one reason or another. ERs are busier than ever because many of the newly insured don’t understand how to find a doctor or can’t pay the deductible and are still using out ERs as their regular point-of-care location.

  27. Wow – I learn so much every time I read your posts, Sheri. It makes me thankful for the insurance we have. My husband was complaining about how much we have to pay a month after his employer pays their part and it pales in comparison to most others I know about. I’ve told him we are so lucky and to just pay it and shut up! We have no deductibles, an extremely low co-pay, and no other expenses whatsoever. After reading your post I am going to talk to him again.
    I am overwhelmed just reading all you do for Tom. I can only hope he gets some relief from his many symptoms. I think of you both often.

    • Hi Patti and how are things there on the west coast? Thanks, as always, for dropping in. Your husband has a good company to work for [in the insurance category]. We have few companies offering no deductible in today’s world.
      Tom’s doctors have told me that things are about as good as they are going to get. Someday the trachea will collapse and I won’t be able to get it open. That scares the heck out of me. We had one of those episodes last night and once I had Tom taken care of, I wasn’t of much use to anyone or anything after he went to sleep.
      I haven’t been on line as much as I’d like as I’m doing mountains of paper work and going through all of Tom’s medical records for the past 25 years. I’ve already worked on it every extra minute I have for 2 months and I’m sure the project will take me until late December. I have hope it will give us both some relief.

  28. As always, my thoughts and prayers are with you and Tom. You are spot on with the rising increase in deductible….it has been the topic of conversation amongst many of us. The high deductible issue is hitting corporate sponsored plans as well as Market Place plans. A good friend who works for one of the worlds largest electronics company was talking about how his premiums and deductibles have risen astronomically in the last 5 years. It is a sad statement when your medical premium is one of your largest monthly expenses aside from mortgage and eating. Then on top of that you have the high deductible. Another friend of ours who just turned 64…sold his business a couple of years ago to retire is working part time just to pay his medical premium and he hopes he doesn’t get sick over the next year with the very high deductible….such a sad statement on America’s healthcare. Thanks as always for sharing Sheri!!

    • Kirt – Thanks for stopping by. The insurance companies continue to drive the high cost of healthcare. The industry alone has more lobbiest than any other group, including war mongers! I was offered a slot at the time I departed DC with one group and I assured Tom I wouldn’t do their bidding at any price.
      That old thing about not needing insurance until you need it is becoming more true each day. It used to be that if you lost your health, you had lost your life as you had known it. Now, it’s a double whammy. I know families that have had spotless credit reports and with the change in medical collections, they now are considered credit risk in every other aspect of their life.

  29. So many times I wanted to jump in on the conversation of your post, but alas, was reading and you weren’t there!

    No one who read the ACA is surprised by what you’re saying. I did read it (because I don’t trust politicians) and was aghast. When I lost my job and had to find personal insurance, I made a point of avoiding the Exchange. sounds like it’s good I did.

    I too have psoriatic arthritis (as well as RA and AS and a few others). Pesky disease. Migraines, too, though try botox. It is a miracle for me, but the doctor admits for many others, it’s not as effective.

    Good luck, Sheri. I’m thinking of you.

    • Jacqui – Please feel free to jump into a conversation whenever you want. Sometimes it’s a day of two before I get back to a discussion and then we’re off and running again.
      Thankfully I’ve never thought of dropping my BC/BS from the Feds. I pay dearly for it but it also covers Tom and I because coverage with Medicare is a joke. I still have to pay for Medicare Part B but then I also paid into it all the years I worked. I would gladly give it to someone that needs it.
      Others on Medicare with a supplement get by fine if they are well but our monthly pharmacy bill alone would be enough to keep us homeless.
      I know from talking with my brother that Kansas has a fabulous BC supplemental plan that he adds on to his Medicaire and he never pays for anything out of pocket. I have no idea why the Kansas supplemental plan is so fabulous but I hear everyone talk about it.

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