PATIENT HEAL THYSELF – PHYSICAL VS. MENTAL

Mental Health/Bipolar Disorder/Mortality
by: Sheri de Grom

We’ve lived with Tom’s bipolar disorder for 26 years and it’s propelled us into a world we never envisioned.

Bipolar disorder had come to stay at our home and it was devastating. However, accepting the diagnosis was nowhere as traumatic as the daily trials we now faced.

Logo for those of us dedicating much of our lives toward advocacy on behalf of the mentally ill.

Logo for those of us dedicating much of our lives toward advocacy on behalf of the mentally ill.

December 7, 1941 is known as the hinge of history. When it opened, the world was never the same again. December 7, 1987 holds the same world-changing torment for Tom and I. From Tom’s first hospitalization, on that long-ago day, I’ve known the enemy of his illness could strike from any direction at any moment with no warning and our lives would change yet again. This enemy knows no mercy.

I’m convinced Tom’s many complicated physical illnesses have two direct causes: one is the result of years of taking harsh psychiatric medications and the second is the fact that physicians have not provided him with the quality of medical care they would have, had he been free of his bipolar illness.

The more I learn of physician neglect of individuals with mental illnesses, the more disturbed I become. These doctors are in essence playing God when they elect to hold back on life-saving care.

It doesn’t make a difference that our loved ones didn’t ask for these diseases.

I can’t imagine an orchard wherein you go pick the fruit of your choice. Would your loved one pluck a succulent ‘bipolar disorder’ fruit with its many mysterious layers?

Shiny schizophrenia hangs low to the ground waiting for a productive teen, in the prime of their life, for them to catch the fascinating fruit. This teen is never the same again nor is  his/her family.

The orchard is full of robust trees beckoning all to enter. What a tragedy it represents [except for those who make money from the chemicals that find their way into the bodies of the individuals we love. Heaven forbid ECT should be the resulting treatments.]

I’ve learned much about the destruction of Tom’s body due to his having suffered from bipolar disorder for the past 26 years. Learning by living through the process is catastrophic. I journal about our daily experiences but have found it impossible to place my words in a blog that would be coherent.

Some of the events Tom and I have endured during this past year in trying to find quality health care for him in the past 12 months has been some of the worst we’ve encountered. I feel the necessity of sharing with you how far mental health care HAS NOT ARRIVED in the 21st century within the medical community itself.

Some of my entries will not be in chronological order and I’ll do my best to keep each entry date stamped for your ease in reading.

I will share with you over the next several months what we’ve had to do to keep Tom alive. The medical community didn’t seem to care rather he lived or died. I wish I didn’t have to make this statement, but I do. It’s been proven to me time and time again. We’ve had one crisis after another for a full year now.

There’s nothing easy about being a 24/7 caregiver. It’s no longer about just providing care, there’s the responsibility for researching every new symptom, test, prescription, etc. You don’t dare miss a single opportunity or allow a single clue to go without research. Doctors have an interesting way of listing diagnoses on a patient chart and never once mentioning those very diagnoses to the patient or their caregiver.

I can’t begin to express how your outpouring of love, prayers, and support lifted me up in the many dark days since my last blog. It’s been an exhausting time and I’ve wanted to bring everyone up to date and continue to check in on everyone as well. [Where do the hours go?]

I continue to hold ‘Doc In The Box’ in the highest regard. I believe with my entire being that they saved Tom’s life.

It doesn’t matter to me that Tom’s heart surgeon said to me while Tom was in the hospital, “Never go to Doc In The Box, they’ll kill you.”

I spoke up immediately and said, “They saved Tom’s life when you were nowhere to be found!” I don’t think he liked my answer and continued on with his rage about all the small walk-in clinics opening and of course he didn’t want to discuss the medical needs they meet.

This same heart surgeon cleared Tom as being medically sound for his new pulmonary doctor to perform a bronchoscope the following day. Tom has complete faith in this new doctor [not me, I’d fire him if Tom didn’t like him so much.]

Tom’s endoscopy had been underway approximately 1 ½ hours when the doctor came to the waiting room to locate me. I knew immediately something was wrong or an assistant would have called for me.

The doctor escorted me to Tom’s area and explained he was unable to complete the procedure. Tom had a heart attack during the procedure and his right lung completely collapsed with the second lung in danger of doing the same. The doctor had wanted to take some biopsies but was unable to do so because of Tom’s critical condition.

The decision was made for Tom to be admitted to the hospital for continuing care. Each time the heart doc came in to see Tom, I wanted to give him a solid punch but refrained.

I have another blog prepared that predates this medical adventure but felt for simplicity’s sake, it was easier to bring you up to date of what was presently happening and how I believe it all ties into Tom’s mental health diagnosis.

It’s easy for us to overlook the most important health statistic of the past century. Life expectancy has increased dramatically in the U.S., from 51 years in 1910 to nearly 79 years (81 years in women, 76 years in men) in 2010. This increase converts to nearly 3 years of additional life every decade or a gain of almost 4 months every year.

 Unfortunately, reductions in mortality are not shared equally in this country. The same Centers for Disease Control and Prevention data show that mortality associated with mental illness should command the attention of anyone who cares about health disparities.

Most of the early mortality with the mentally ill is attributed to what is labeled “natural causes” such as acute and chronic co-morbid conditions (heart diseases, pulmonary diseases, infectious diseases). Only 17.5% of deaths are related to “unnatural causes” such as suicide and unintentional injuries.

The Center for Disease Control (CDC) estimates the increased mortality could be averted globally by a minimum of 8 million people. That is, 8 million deaths could be averted each year if people with mental illness received the same level of medical care those without a mental illness receive.

It’s a given that parity does not exist within the mental health arena but why should we have to fight so hard for equality of medical care for our loved ones with a mental health diagnosis who also happen to have bodies that are physically challenged over and over?

Again, I thank each of you for reading with me. Collectively we can make a change but we are going to have to stand to together in our endeavor to bring quality medical care to those with a mental health diagnosis.

Do you have stories to share wherein bad medicine played into the detriment of health care recovery of those you cared about?

Thank you for reading with me. I appreciate your support.

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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).
Aside | This entry was posted in Bipolar Disorder, Medical Care 2015, Mental Health and tagged , , , , , . Bookmark the permalink.

94 Responses to PATIENT HEAL THYSELF – PHYSICAL VS. MENTAL

  1. I hate to diss one specialty, but there are a lot of surgeons who are hard to work with. The grueling training seems to weed out people who listen well. I like the addition of hospitalists in many facilities — doctors who look at the whole patient and treatment, all the meds and history. We have so far to go though, especially for older people, people with mental health issues and people who don’t have a lot of money. Best wishes as you continue to fight for good care.

    • Julia – I know exactly what you mean about what I’ve come to call the ‘surgical mind-set’. We’ve had two great surgeons in the last 9 years and all the others might as well be tossed to the sharks.
      The orthopedic surgeon that misdiagnosed Tom’s foot in Sept 2014 led to 8 months of terrible pain for Tom and he ended up in a wheelchair. To compound matters, the 7 doctors we saw during the following months took the surgeon’s word for the diagnoses and looked no further for a cause of Tom’s problem.
      Finally about 4 months ago we received the correct diagnosis. We learned just yesterday that Tom would have probably lost both feet and lower legs if we hadn’t found a doctor qualified and unafraid to make the correct diagnosis.
      Hospitalists have taken over our local hospital and we’ve seen the good and the bad results. The doctors saw the opportunity for better hours & pay and the hospital recruited the best of the best from the local area. Consequently, when the patient leaves the hospital there’s not a descent doctor available for after-care. That’s the primary reason we have to travel to Little Rock for advanced care, none are available in our local area.
      I’m happy with the team I’ve put together for Tom (at the present time). We haven’t reached the bottom of the major problems but we are a lot closer than we were last Sept.
      Thanks for stopping by.

  2. NotDownOrOut says:

    I do not have your extensive experience with medicine, but my more limited exposure has taught me that medicine, institutions, doctors, drug companies, and insurers (including when the government is a source of health care services) have to be monitored by government inspector generals and nonprofit watchdogs. Not many of us have practical training until we have to develop it “on the job” to save our own lives or someone else’s. Add the impairments that result from some forms of mental illness and the potential for life-threatening mishap becomes alarming. Unfortunately, I think, the alarm is often heard only by patients and their caregivers. It is very sad to think of how many of our veterans suffer illness resulting from service to our country and then experience magnified suffering due to lack of compassionate care on their return home. As always, I hope you and Tom continue finding support whether from a Doc in the Box or another caring doctor.

  3. Patty B says:

    hi Sherri, I read all the comments and really have nothing new to add, I liked what everyone said. I hope you can feel the prayers as I pray for you and Tom. So sorry that both of you have had to deal with this. My Tom had a quack and he hated when I questioned him and at the very last appt told me to look up the rash Tom had because he was not there for that complaint. At that time even Tom said to find a new doctor. He kept telling Tom his health problems was either his weight or all in his head. At times I wonder if the years we wasted with him contributed to Tom’s early death. We will never know but it would not surprise me.
    Take care of yourself friend – and know you and Tom are thought of and loved by us!

    • Patty – Hello, my friend. How are you doing? Yes, we know the prayers are out there and as I mentioned to Anne, on a day like yesterday, there’s visible proof they are working. I understand I’m not always going to have visible proof and that the prayers are working in many other ways. It was wonderful seeing Tom up and about yesterday and smiling as he went about the tasks he was doing.
      It angers me when I learn of a doctor such as the one your Tom had. I fear too many individuals who use Tricare stay with a specific doctor because they think they have too. I’m not blaming you in any way or your Tom. When your loved one is sick, you (and that includes me) doesn’t know which way to turn.
      Congress is eager to take more out of the Retired Military Healthcare budget as we move into watching the fall-out to the 2016 budget. I’ll give up the commissary any day of the week [although way back when, I was a buyer for the commissary as I was making my way up the Civil Service ladder] before I’ll surrender any portion of health care. I can save more shopping in the civilian sector than at the commissary plus I don’t like to drive all the way to base.

  4. inesephoto says:

    Sheri, I am really sorry for what you have been through these months… Your Doc’s remark about his “The box” colleagues is unethical, but I really hope he himself will do a good job for Tom. A patient with mental illness suffering physical illness bears a double burden. Take care of yourself, Sheri, you are the best caretaker Tom can hope for, and your own health is as important.

  5. Lignum Draco says:

    Sheri, I’m so sorry to hear about all of these health concerns for Tom, but I can’t help but wonder about the effects on you as well. Please take care of yourself as well. And don’t let them win.

    • Lignum – Let them win — never. It’s not even entered my mind. Tom’s very sick but I am being careful with my own health as well. I’m staying on a relatively strict regiment of healthy foods, and keeping a balance of working in my gardens plus reading for pleasure. I’m learning some creative ways to carve out extra bits and pieces of time where I always thought there was none before.
      I’ve redesigned all of my gardens this year and that’s a major project within itself. I’m almost to the stage of hauling in dirt – I have an extra shovel if you’d like to help shape the flower beds:}

  6. Sheri as I shared before it is harder to watch those we Love hurting than when we hurt ourselves but even worse when they are not cared for by those we entrust them to.

    I respect you Sheri for the courage you have shown and know that the many prayers for both of you have been answered so you would have the strength to endure and we will continue to pray for a good outcome for Tom. Miracles do happen as my life shows.

    Christian Love Always – Anne

  7. ksbeth says:

    this is a horror story. though, not a story at all sadly, but a retelling of a horrible truth. i cannot believer all that you two have been through, and continue to go through, all in the name of just trying to live your lives. my thoughts and hugs are with you as always and i thank you for sharing this publicly and helping to spread the word. we all should be outraged.

    • Beth – Hello and how are you. Thanks for stopping in and reading today. You are such a champ to always leave a comment.
      I’ve thought about so many issues since writing this blog but one of the most urgent that comes to mind is that it’s not only Tom who’s at risk for receiving the medical care he needs. Yes, he’s at a higher risk but in the past 10 days a good friend of mine and I have gone through the medical records of 15 close friends (per their request) and none of them have received the follow-up care they should have had for different diagnosis they have. None of the individuals have an identified mental illness but each one DOES HAVE A LIFE THREATENING DISEASE WHICH WILL SHORTEN THEIR LIFE IF NOT TREATED DEFENSIVELY.
      The individuals all have excellent health insurance, have professional careers, above average income and comfortable lives.
      Why are we not being told about diseases we should know about until it’s too late to do anything about it?
      I believe every American should challenge their treatment team and by all means, get a copy of your medical records [you are entitled to a copy] and read the fine print. It might save your life!

  8. I’ve gotten the blow-by-blow account as your most recent trials have happened, but I’m glad you were able to find the time (and mental space) to get all of this down in writing. Your narrative is so compelling (and, for the most part, alarming). You will never know how many others you have helped through your blog posts.

    • John – Hello our friend. We do hope you are having a fun filled artistic kind of day. I fear my gardening has to be worked in around the rain. I won’t complain. I remember floods from when I was a child and Dad lost hundreds of Black Angus cattle because they drowned. It was a pitiful sight and I’ll never forget the clean-up required. Dad would have done it anyway.
      Often when I’m waiting for doctor appointments or other events, I grab my journal from my purse and start writing. Not only is it a good way to get my frustration out on paper but it allows me to have an accurate record of what happened when.
      I believe we are going into Little Rock only once next week and I’m looking forward to that possibility. Those trips are hard on Tom and wipe out an entire day for me.
      Take care my friend. We always love hearing from you although Tom’s ability to talk is somewhat limited. Sheri

  9. Elaine says:

    Keeping you and Tom in my prayers ,Sheri. God bless you for fighting for Tom.

  10. Oh Sheri, it just never gets any easier for you both, I’m so sorry to hear about these most recent problems and still in awe of your ability to live through this with such strength and the compassion to share your story for others’ benefit.

    • Hello, Andrea. Thank you so much for reading and commenting. My hope is that by sharing our story, it will give others the knowledge to fight for what is rightfully there’s in the first place. It adds hours to an ordinary day and I often wonder how I managed when I worked as many hours as I did for my career. Perhaps that’s the reason I was younger then and it seemed easier to manage. I’m being honest and open when I say, physical medicine is harder to acquire for those with a mental illness than mental health care.
      I understand we aren’t in a typical category as we have full pay insurance but then I made sure our coverage was set up that way. Now that we are forced to enroll in Medicare, it doesn’t seem to matter one bit.

  11. You are correct, Dr. Bramhall. Without our health, we have absolutely nothing. That’s the reason I continue to fight the battle. Congress must understand every citizen of the United States deserves the best care available to man-kind. No one deserves to be pushed aside or lumped into a status of 2nd class citizen. Thank you for stopping by to read with me and leave a thoughtful and encouraging comment.

  12. So glad to see you here, Sheri. I’ve been wondering about you.I cannot believe there is this inequality of medical care. Wouldn’t we call that discrimination? Prejudice? This is so w.r.o.n.g.
    I’m sorry you are still fighting for proper medical care for Tom. Throwing drugs at a problem without vigorous investigation as to the cause of the illness is not right, but it is much easier. It seems to me, These medical people don’t have the patience or don’t want to take on anything out of their comfort zone. Then again, isn’t the health care provider restricted by insurance companies as well? It’s a nasty situation no matter how I look at it.
    As always, wish you well. Glad Tom has you in his corner. Don’t forget ot look after you as well. ❤ ❤ ❤

    • Tess – Hello my friend and it’s so nice to see you here and yes, the inequality of health care screams of prejudice and discrimination. It’s been going on since the beginning of time and although Congress loves to throw money at the problem, they’ve never once stopped to ask an advisory committee of actual mental health consumers and/or caregivers what would be actually the most helpful. President Obama declared he had a fix for mental health care and appointed VP Bidden to carry out the fix. We know how well that didn’t go! Their solution was to throw millions of tax payer’s money to Community Mental Health Center’s. While I believe a well run Community Mental Health Center is of real importance to individuals needing mental health care, I’ve seen far too many full of employee greed and thus corruption.
      These center’s need competent mental health employees and staff that’s innovative in teaching their clients how to function in today’s world. I’m not suggesting rocket science but I am suggesting the client’s could be taught about good nutrition, how to shop and cook a nutritious meal, perhaps have 12 step meetings at the center, have a broader reach for transportation to reach the center, and yes the list marches on.
      Thank you for always being here. I so appreciate your reading with me. You always leave a comment that’s right on. Thank you from the bottom of my heart.

  13. willowdot21 says:

    Sheri just don’t know what to say. I fear that medical care especially for the mentally ill,which has always been the Cinderella arm of medicine, is sadly dropping behind.
    I do admire you and I wish you all the strengthen you need to carry on. Thank God Tom has you but who do you have for Support. Sending you love and strengthen. xxxx

    • Hello, dear one. I’m posting our frustrations with the health community at large because I know others are having some of the same issues and I want them to know they have to keep fighting to get the care they have every legal right to receive. We cannot back down when we know things are not going as they should be.
      Tom and I are the tip of the iceberg. I thought fighting for mental health care was hard but amazingly, it’s the fighting for due diligence in physical medicine that’s a tougher challenge. I spend days on the phone following up on what should automatically be taking place and coordinating between doctors. We supposedly have electronic records to make life easier for all but so far, this simply hasn’t worked.
      I don’t believe we’re going to find an increase in quality care for the mentally ill. Therefore, we must have a vested interest in helping each individual live the best life possible.
      Thank you for stopping in to read with me and taking the time to leave a comment.

  14. I’m so sorry you and Tom are going through yet more health crisis Sheri. I wish everyone had a Sheri in their lives to help them through.

    In the field I work in I do come across a lot of people who have mental illness who desperately need medical care. There are usually a couple of factors involved. The person themselves are refusing to seek medical care (for various reasons) and some do not have a support system in place of any kind to try and help navigate the medical system. But the primary issue in getting the help, is the person’s refusal.

    • I’m discovering receiving the medical care Tom ‘should receive automatically’ is not happening. Take for example the former cardiologist who didn’t inform us that his left artery (known as the widow maker) was 100% clogged) and she had the report in her hands more than once. Just because Tom never complained of chest pains, she never ordered a heart cath which then led to the stent placement allowing him to live! She’s also the one that conducted the ’tilt test’ and when Tom failed the test, she ordered no further exams. I’m not a doctor but I knew there was a reason Tom was falling often and had no energy.
      I clearly understand your last sentence in your comment when you write, ‘the primary issue in getting help, is the person’s refusal.’ However, I disagree with the content. I believe 100% if the patient doesn’t refuse, they simply can’t go on any longer in a system that treats them like 2nd class citizens.
      What I’ve witnessed time and time again is the patient [Tom and many others] is that they are tired of fighting the system. They are sick, very sick, and most don’t have one-on-one advocates fighting the fight for them. I can’t tell you how many times Tom has asked me to please just stop. He was too tired to fight any longer. I’ve seen this with so many other patients. They don’t have someone like me to keep up the fight and badger the physicians until we get the help Tom not only needs but that he deserves.
      I see the VA [Tom does not get his physical care at the VA] and civilian practitioners alike make seeking medical care a living hell for individuals with a mental illness diagnoses. They will never receive the health care they so richly deserve if they don’t have advocates who care enough about them to fight on their behalf.

      • Sheri, I agree with your follow up statement here. Though we do often struggle to get many to agree to seek medical care …. we have the same issue you express here. We’ve had doctors who can explain to me the mental illness a person has, and then in the same breath tell us they are ‘discharging’ that patient from their practice because they are non-compliant, or whatever reason they give. Being a ‘lay’ person and not a medical person, even I recognize that their non-compliance, or whatever reason they give, is almost always an inability of some kind to “be” compliant. It’s difficult for the staff and doctor’s to work with them, so they don’t. This has been given to me as a ‘reason’ on more than one occasion. (I want to add a disclaimer that not all of the physicians and staff I’ve dealt with do this, but enough have to leave me shaking my head). And as you and I both feel, not having advocates to help through the nightmare of getting medical help is key.

        • I couldn’t agree more. We have so few in the medical profession willing to go the extra mile and our government isn’t making it easier for doctors to reach out their hands to help patients. It’s a frustrating situation and one you and I both deal with on a daily basis.
          I’ve always been mystified by non-compliance. My mind tries to wrap around the concept but I’ve never fully understood that if you trust your doctor, why then don’t you follow his/her instructions. I understand how some patients hate the side-effects of some medications so they stop taking them but for other situations wherein treatment is a win-win, I simply don’t understand.

          • The folks we see who are non compliant….well, there is such a variety of reasons, and a mix of reasons. “I” would think that feeling ‘better’ and in control may be worth it. But some of our folks, on top of a mental illness (or two in many cases) also have added cognitive changes like dementia. But I’ve had some folks tell me they prefer the mental illness to the way the medicine makes them feel. I can’t argue something I don’t understand. On the occasions someone tells me this, I accept it as they tell me, because I don’t know what they’re going through. But I sure can see what they struggle with. And there is no easy solution.

            I’m ever so grateful for situations we get called in to and there is a “Sheri” committed to caring for, and advocating for their “Tom”. We don’t see it often, but when we do, it is a Godsend and it is what we wish for all of our folks.

            • Thank you ever so much for your kind words. Like you, I don’t live through what Tom lives with on a daily basis. I’ve been on this journey with him from day one and I’ve seen the mass destruction the medications have done to his body. I can’t count the number of mental health individuals who call themselves professionals that really don’t care at all. I’ve been there to disengage them from Tom’s care but sometimes, I’ll admit, it hasn’t been soon enough. And, yes, Tom has 18 diagnoses to go along with his mental illness. I’d venture to guess at a minimum, 16 of them can be traced directly back to off-shoots of his bipolar condition. The scary part of this is that each diagnoses on it’s own calls for more intervention and more medication and the vicious circle continues. Tom’s psychiatrist has been promoted so many times since Tom started seeing him that he’s no longer seeing patients. He’s so good he keeps getting promoted and now he’s a top administrator. However, because I’m totally involved in Tom’s care, the psychiatrist continues to see Tom on the side. I cannot tell you how blessed I feel because he could have easily cut us loose into a sea of sharks to start over and if that had happened, I believe Tom would have completely given up. I e-mail this doctor with every medical change and with every medication change Tom has. If a medication is not good for Tom, he’ll call the medical doctor and advise them we have to have something else.
              It’s a shame that when a doctor is so good, to advance his career, he’s promoted into a position where he no longer has patient interaction. He’s been recognized as one of the top psychiatrist for treating bipolar disorder in the country and it was sheer luck that we found him on our way across country. Once I met him, I told Tom, we had to live here. I wasn’t giving this doctor up. This doctor is the only physician Tom sees at the VA but he is ‘golden.’
              When Tom and I married he took no medications and had no on-going medical issues. I would not have changed my position had I known what was coming my way. This man saved my life in so many ways.

              • And for all that you said…..what keeps going through my mind is: we ALL need this kind of love and devotion in our lives. And for all that you and Tom do for one another, the rest of us benefit by seeing this kind of commitment.

                As far as doctor’s/mental health/and not caring go…..I am beyond frustrated for so many of our folks. Yes, many are mentally ill, but truthfully, for many medical professions now it is just a business. And if someone isn’t making quick and/or easy money off of you they will not waste their time on you. I know that there are damn good doctors out there. And the business minded ones are not the norm. But there are enough of them out there that it is noticeable.

                What a huge blessing to find this good doctor for Tom. I hope he is teaching, if he is this good, we need him to spread that good knowledge (and care for his patients).

                • Colleen – I do my best to find not only excellent medical care for both of us but caring physicians who want the absolute best for us. I built up zero tolerance for shoddy mental health care for Tom and would dismiss a doctor on a dime. However, on the medical side of the house, things aren’t as easy. I know I have to always have a back up plan in place as his diseases are indeed life threatening. My own therapist is also a golden winged provider. When I turned 65 in 2012, Medicare gave us such a run-around, she did not receive payment until this past May 2015. All we needed was an opt-out letter from Medicare before BC/BS would pay and it took us that long to get it. However, my therapist continued to see me the entire time without billing me directly. She will not be paid for about 2 1/2 years of her work because now BC/BS considers the window for claims closed and it’s Medicare’s responsibility she couldn’t bill. She told me she would simply write the amount off. I’ve been with her since we moved here and she’s undoubtedly the best, the very best therapist I’ve ever had and continues to see me. I often think with all that I encounter in Tom’s illness and continuing to deal with my own mental health when it raises it’s ugly head, she is indeed my saving grace.

                  • Sheri, for all of the problems we encounter in the medical field and the medical business (the bane of healthCARE) there are incredible professionals. I’ve been extremely lucky with my health care. But my own mother suffers from having doctors who are running a business and not practicing medical CARE. I do believe insurance has been given a power they had no right to have. And they have stolen the soul of too many physicians and medical care providers. They have broken the spirit of the purpose of doctor’s.

                    I’m happy to hear of your therapist. I hope she knows the saving grace she has been. (I am SURE of your telling her. 🙂

                    • Yes, I’ve told her over and over as well as sung her praise many times here on the blog and am preparing a congressional letter asking for an explanation of why such a superior therapist should have to go unpaid when the ‘insurance companies’ sole purpose in the business was to make our lives miserable. I have a blog coming up about that also. I so agree about the insurance companies having too much power and business attire will never take the place of a medical degree. I do believe we sing the same song, Colleen.

                    • I’m glad there is ‘you’ singing with me and for me and everyone else. There is nothing but frustration in our world regarding health care. At a time when everything is so “advanced” why do we all feel so beaten down by the politics and power given to the insurance companies over our lives?

                    • We are not going to allow them to win. We will prevail. No one will do it for us, therefore we are grassroots advocates.

                    • You are an empowering force Sheri.

  15. As I’ve said before, Sheri, I can’t imagine doing what you do. May God bless you and reward you richly for the wonderful and faithful wife you’ve been to Tom.

    • David – Thank you so much for stopping in to read with me and comment. I believe if the tables were turned, you being a man of God, would do exactly the same thing. Believe me, I’ve thrown myself on my knees many times to ask God for strength and direction for I was lost in the maze and God continues to come through for me.
      I’ve had doctors ask me why I stay, why don’t I put Tom in a nursing home. My answer is always the same: I married Tom in sickness and health within the traditional marriage vows before God. Loving another unconditionally makes the path much easier. God has intervened so many times on our behalf.
      Once I learned the concept of ‘turning life over to God’ it made all the difference in my world and in how he leads me to help Tom.
      Tom and I celebrated our 28 wedding anniversary on April 26th. I’d asked God that Tom might have a restful day as we were going through a tough time with his health. Other than waking a few times for sips of water, Tom slept the entire day. However, what a wonderful gift for me. I played our favorite music and stayed by his side and read. We were together and Tom was at peace and seemed comfortable. What more could I ask for.

  16. Marie Abanga says:

    Sheri I was thinking about you so much recently that I almost tried sending you an email. I know first hand how the medical system in that your country can reduce you to ‘Take my Meds’: Throw Pills at the Problem and careless about the Problem that Produces. If you care to pray then for that problem, go ahead, but if you go back to that doctor, well all he knows is the latest pill and his prescription pad. How often they who are ‘experts’, will tell you bluntly: ‘Let’s give this a try… we’ll start at…and we’ll see how it goes…’ Inshort, not wanting to rant into a river of tears, I stop here and wish you both the best you just can have one second at a time

    • Marie – Thank you for stopping by to read with me and I always appreciate your comments. You are so right about the doctors always having their prescription pads ready and now that electronic transmission of prescriptions are rewarded in the US, half the time you don’t know what you are getting until you arrive at the pharmacy to pick it up.
      The wonderful thing about Tom’s psychiatrist is he took Tom off of the massive dose of psychiatrist medications Tom took and now Tom only has 3. However, due to the number of other diagnoses Tom has, the list of RX’s pile on.
      I honestly had no idea what to expect as Tom grew older with his bipolar disorder. Nothing seemed to be written for the patient over 50 that I could lay my hands on. Now the research is starting to trickle down and it’s not good. The numbers are reflecting the same thing I’m encountering when I seek the best quality of medical care I can possible receive for Tom.
      It is crazy making as we have the best insurance anyone in the United States could possibly have. I made sure of this and it’s one of the reasons I researched everything so closely. It doesn’t seem to make any difference. The doctors still don’t want to protect Tom from the physical illness that occur in his life.
      Even The World Health Organization has advised this very issue is of epidemic proportions across the globe and must stop. They made this statement more than a year ago and still nothing has happened.

  17. Gallivanta says:

    I am sorry to hear that the struggles continue for you and Tom. I hope somewhere in all this you have time to sit quietly with each other and refresh your souls.

    • Thank you for stopping in to read with me and taking the time to comment. I always wondered what we’d face other than mental health issues as we aged. There seemed to be nothing available to read or abstracts to study. I’d ask doctors [psychiatrist] and they’d tell me individuals with bipolar disorder rarely live past 40 and sometimes 50 is considered the outer limit. Now we know why. These very patients were not getting the medical care they needed for other illnesses. No matter how many psychiatric medications were thrown at them, all that did was further destroy their organs and ability to function.
      I’m determined Tom will have the best medical care available and nothing is going to stand in my way. To think, a cardiologist who knew Tom had a completely blocked left artery [the one they called the widow maker] scheduled no follow-up care for me. To me, that’s not the sign of a patient refusing to follow through on their physical health care, that’s a patient where the doctor has signed the patient into a death squad! We would have never known Tom had a 100% blocked artery if we hadn’t sought out a second opinion and now he has a stint! How many other patients, both mental illness and elderly individuals without an advocate has this happened too in history? However long it’s been going on, even 1 patient is 1 patient too many.

  18. GP Cox says:

    Even with your own health issues, you continue to have the strength to care for Tom. His doctors have been a constant cause of strain to you both and it is only through your love of each other I believe that keeps you both here together.
    [you know, if it’s time to vent – I’m always around.]

  19. Great post as usual. Your words ring out the truth. Blessings to you, dear Sheri.

    • Yvonne – Hello, my friend, and how are you. I think of you often and your love of pets. Scooter, Tom’s little shih tzu is on his final days and we’re unbelievably sad. Scooter has definitely always been Tom’s dog. Today, I have Scooter in my office and Miss Priss is playing doctor dog with Tom. She’s taken to the role like a true princess. I’ll admit, I miss having her hang out in the office with me or going to the garden, but she has a greater role to play at the present time.
      I don’t spend a lot of time in the garden but it does provides me wonderful stress relief. I thought you’d be interested in knowing that Prissy has never barked in the 9 years we’ve had her. That is until she became Dr. Dog. If she believes Tom needs assistance she’ll come racing into my office and give out 2 sharp barks. If I’m in the garden, she goes to both the front and back door and does not stop barking until I’m in the house. It’s amazing how animals we’ve loved with all our hearts, and yes, she’s also a rescue come to be our greatest asset in our hour of need.

  20. cindy knoke says:

    Oh Sheri, you are so eloquent and such an incredible advocate for the pressing need for improvement in patient care in the US mental and physical health care mis-delivery system. Sooner or later, everyone will be exposed to poor care, and your voice is the singing of the honest and valiant, canary in the cave. Love to you and Tom!

    • Cindy – Hi there and thank you for stopping in to read and comment. Due to your intimate knowledge of our miserable mental and physical health care conditions, I always value your thoughts and ideas.
      I read an abstract last night containing a term I hadn’t heard before and I fear I’ll fall into that category along with so many other career women plus many others. We are what they now call ‘elder orphans.’ It comes down to us, when we need an advocate, no one will be there for us. Anyone 65 and older, without a surviving partner or living children willing to participate in their care, will fall into the category. It no longer matters how much protection we’ve put in place to protect the one’s we love. Health care is now 2nd class and in many instances 3rd class and below.
      In my opinion, it is in our best interest to keep the issue of ‘elder orphans’ front and center of any discussion about health care going on [in those buildings on the east coast].

  21. rabbiadar says:

    Sheri, I am so grateful for your willingness to write about this. My own experience, carrying the relatively milder labels of “depression” and “sexual abuse survivor” is that mental and emotional troubles are simultaneously a way docs use to justify neglect and to justify mistreatment. Not all docs but way too many of them. As for my son, a rapid cycling bipolar patient, I worry all the time. I see what the meds to do him. He won’t let me go to doc appointments with him, heaven knows what goes on.

    We do the best we can and hold them accountable when we can. Do you know if NAMI has been involved with this issue?

    • Ruth – I have a lot of admiration for many programs NAMI puts in place and they are honestly great programs. However, I was on the Board of Directors, NAMI Arkansas and served as the National and State Legislative Liaison. Had I known NAMI would not fight for anything that might ‘rock the boat’ with anyone on the hill, I would never have agreed to serve in that position. I resigned my position during my 2nd term.
      I’m no longer involved with NAMI. Having worked on the Hill for 5 years during my career, I have more access to who I want to talk with and when.
      The World Health Organization has addressed this very issue as a World Health Epidemic and they have real power. Yet, even WHO admits progress has not been made in the last 30 years.
      Until Tom started treatment with his present psychiatrist, I could count on one hand the number of visits I attended with him. We’ve been with his present psychiatrist and have no plans of ever leaving. The doctor and I have a great relationship and he’s the best doc Tom’s ever had. My involvement with this doctor has been extensive and I’m the one that lets him know when a medical doctor has added any medication to Tom’s physical needs as so many interfere with psych meds.
      A while back I wrote a blog titled ‘How Safe Are Psychiatric Medications?’ I’m not sure you saw the blog and some of the comments were informative from a patient’s point of view. The date of the blog is 10/18/2014 if you’d like to take a look.
      One of the classes NAMI offers is the Family to Family. It’s a 12 week program, 1 session 1 night each week. I highly recommend the class if you haven’t taken it.
      I believe if we continue to fight for what is honest and just, some things will have to get better. Sheri

  22. Thank you for the update and I am so glad that you are proactive about finding the best care for Tom. Our family will continue to pray that all of your needs are met and that Tom gets the proper care. I was thinking the other day that you would make a great president for this country. Always so supportive of human needs and so knowledgeable about the problems that exist in our country today and what needs to be done to advocate for change. If I don’t like the choices on the ballot, I may be writing in your name! 😉

    • Thanks for the kind words, Michelle. I’d never make a good President or any other politician. I don’t have the personality – I even became tired of being the boss during my career.
      Of one thing I know, the health care everyone in our country is entitled to, is not being distributed in an even pattern. Physicians will do everything they can possibly do for a personal friend or the extraordinary rich. The rest of us are simply left out here to fend for ourselves.
      Obamacare trashed so many positive things we had in place and were working for the benefit of all citizens. With the Affordable Care Act [ACA], many of those programs have been erased and patients have to pay large co-pays to receive the same treatment that used to be covered 100%. I’m learning more and more about policies purchased under the ACA haveing such high deductibles and the deductibles must be paid before a doctor’s visit or a hospitalization, the same individual who never thought of being at health care risk, no longer can afford health care even when the ACA considers them insured under the very act. Something is very wrong with this system.

      • That’s the reason that you would make a good politician. Because you don’t have the the personality of one! LOL! 😉 And you realize the injustice going on in this country and strive to make a difference. I love that you care so much! But I get it, who really wants to be in that kind of a position anyway. Those kinds of jobs only give you more gray hair and probably a lot less sleep than the little you are probably getting now. Pray for change… I am hopeful that it will come soon and that it will be a change for the better. Heaven forbid it gets any worse! 🙂

  23. Sheri,

    As a person who has battled bipolar for over twenty years, I am grateful for advocates like you who care enough to speak out. I pray you receive the attention you need so your husband might receive the best care available.

    • Tony – Thank you for stepping forward. I always appreciate it so much when someone with the disease let’s me know they are also fighting their own battles. It reminds me that Tom and I are not out here alone. Please don’t allow your medical doctors brush you off and do demand to see your medical records. You have the legal right to see every document relevant to your health care. It wasn’t until about a month ago that I was actually able to put all of Tom’s records in chronological order and once I had a list of his diagnoses, I realized how many times he hadn’t received medical intervention when he should have.
      Because Tom didn’t receive the proper care in the early stages of two diseases, his life is shortened even more and his quality of life is damaged to the point where I believe the physician responsible was criminally negligent.

  24. Terry says:

    I wish things were different. I wish things could be fixed. I do love how you stand up for what’s right

  25. When your friend above said, “And simply throwing pills at the problem, with no concern for side effects is so typical of mental health treatment,” I can’t agree more. We were very frightened, putting our daughter on a bunch of drugs when she was only 15/16 years old. The last “trial” her psychiatrist started her on 2 drugs with very similar side effects and my daughter was violently ill for about 24 hours – while she was in the mental hospital -without me there. I felt so bad for her and could do nothing because I was at home! She is now drug free and doing quite well, actually. They replaced all drugs with the birth control pill – as a mood regulator – and dang, I think it’s working. I feel much better about using this one instead of all the others which are not supposed to be used on teenagers in the first place!!!!

    • Patti – That’s the best news. I’ll be anxious to learn how the birth control pill works for your daughter. Tom’s oldest daughter didn’t have the deep suicidal urges your daughter exhibited or the depth of the depression but she definitely was out of control around the time of her periods each month. She and her mother would go at each other as if a war were going to break out any minute.
      Thankfully this was years before Tom was diagnosed and a smart doctor suggested trying birth control pills to see if that would stabilize her severe mood swings and they worked. I’m not saying she didn’t still like to manipulate and try at every opportunity to see how she could control everything – but I think that’s often normal behavior in any blended family.
      I was reading Susan Mallery’s novel Mischief Bay last night and she has a teen daughter in the book that plays out the perfect role.
      Mischief Bay is to be another series in Women’s Fiction and I’ll say I’m hooked. If you haven’t read it, I highly recommend the book.
      I hate what mental health hospitals get away with when treating teens. Much of it is criminal yet it’s next to impossible to get the evidence needed to prosecute. I hate to say it but many of them are revolving doors for making money.

  26. lbeth1950 says:

    I do believe patients with mental health issues are seriously devalued!

  27. I had to laugh at the doctor’s response to the ‘doc in the box’. When I told my rheumatologist how much relief I got from my RA with magnets, he couldn’t stop himself laughing. “Whatever works”. Yes, and it did, not always, but enough that it is a good alternative to drugs. I think they don’t like anything outside the limits of their medical knowledge.

    • Jacqui – I agree with physicians not liking anything outside their realm of medical knowledge. They also don’t like anything they aren’t making money from. I’ve learned that if something doesn’t seem right for Tom, I must stop and question why of every resource I have at my disposal. The ego also get’s in the way. Some doctors want us to believe they and they alone have all the answers and they get angry when we challenge them. But, if we don’t, who will.
      One of the internist I always liked the best was one I had when we lived in the Ozark Mountains for 2 years. I always made sure my appointment was the last one of the day and we almost always ended up doing research side by side in his office on a couple of lap tops. I learned a lot from him and I felt great the entire time. He was unconventional, so much so that the practice let him go and I saw that as a great loss to the community.

  28. We are at the hands of the doctors. With the medications we’re damned if we do and damned if we don’t.

  29. Oh, my sweet girl. I am so sorry and wish you both the very best. The doctor’s rant about ‘doc in the box’ is totally uncalled for and unprofessional, bordering on sanction-worthy if it were my call. Jackass! I want to come over there and rip his jewels off for you…. As you say, Tom didn’t ask for this disease, any more than anyone else with a mental health disorder does. In so many cases it is a ‘wiring’ issue – something in the brain that simply doesn’t work correctly. If it were a bad electrical system to the heart, lungs, any other part of the body, the docs would treat it seriously, doing everything they can to fix it while doing everything they can to protect their patient. For a doctor to treat a patient less than professionally because the wiring problem is in the brain is, to my mind, criminally negligent. And simply throwing pills at the problem, with no concern for side effects is so typical of mental health treatment.

    As you say, care for mental illness is still nearly at the level of London’s Bedlam Mental Hospital (“hospital” said totally tongue-in-cheek) where mental patients were considered inhabited by demons. Having been through a tiny bit of what you are suffering, I can only imagine the heartbreak.

    Don’t give up on doc-in-a-box. And don’t give up on second opinions. I saw several psychiatrists for my depression before finding my present doctor – she works with the county mental health center, about the most doc-in-a-box you can get – but she is absolutely brilliant. She doesn’t work there all the time, she has her own practice, but she gives back to the community by working there a few days a week. She is the most compassionate, realistic, absolutely helpful psychiatrist I have ever had the pleasure to work with. She pulled the drugs that were doing more damage than good and put me on a couple others that have literally made me a different person. I hope this gives you hope, Sheri.

    Your Tom may like this doctor, but sometimes mom has to make decisions about what is best. And sometimes the best doctor is the one that you hate on a personal level, but who is the very best, the most focused on the overall health of your child rather on being a nice guy. And yes, sometimes – like with your current doctor – the whole rant-and-rave is simply because he knows he isn’t as good as doc-in-the-box and doesn’t want you to twig to it.

    My thoughts are with you both, Sheri. Love to Tom. Leiah

    • Leiah – Thank you for stopping in and not only reading with me but leaving a well thought out comment.
      We have absolutely the best psychiatrist for Tom that he’s ever had. The man is absolutely unbelievable in his caring and treatment of Tom and respect for me. After our year of struggle, I believe we now have a good treatment team for Tom with the exception of the new heart surgeon. He believes since he’s the one who put in Tom’s stint that there could be nothing else wrong with Tom — but, bottom line, there is. It may not be heart related at all but his attitude about being absolutely sure there’s nothing wrong with Tom’s heart leaves me suspicious. Why did he have a heart attack during his outpatient procedure?
      Something’s not right and I intend to see what’s going on!

  30. I think the battle over quality health care is the most important battle we fight – if you don’t have your health, what do you have.

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