HOW SAFE ARE PSYCHIATRIC MEDICATIONS?

The American Recall Center/Personal Experience
by – Sheri de Grom

Far Too Many Pills - Photo Courtesy of Death to the Stock Photo

Far Too Many Pills – Photo Courtesy of Death to the Stock Photo

Each day begins with my swallowing a handful of pills and injecting a shot. Each medication has more side effects than I care to think about. Four of the pills I swallow in the a.m. are for panic attacks resulting from a nasty case of PTSD. I’ve worked hard in therapy and thought I had managed to put everything in a pretty box and handed it to God. The move to DC I’ve talked about a lot brought on other events leading to more severe panic attacks. After my second brain injury, I was diagnosed with Narcolepsy and here came another pill and more panic. I suddenly found myself in one dangerous situation after another and I had no idea when my body would betray me and fall asleep, unannounced. And I shouldn’t forget to mention the medication to treat my on-going nerve pain (although I cut it in half). I can’t stand the way it makes me feel if I take the prescribed dosage.  I’ll be talking about my medications in another blog as PTSD (Post Traumatic Stress Disorder) and TBIs (Traumatic Brain Injuries) have been the culprit behind most of my serious medical conditions.

Before I have my first meal of the day, some four or five hours after that first handful of pills and the injection, I swallow another handful of drugs and so on and so on. Without my medication cocktail my body rebels and reminds me why the prescriptions are necessary.

Today’s blog will focus on the medications my husband Tom has taken and the resulting damage to his body.

Medication is almost always a part of the recommended treatment course for bipolar disorder. People with undiagnosed bipolar disorder will sometimes self-medicate with alcohol or drugs to try to relieve some of their symptoms. It’s with thanksgiving I’ve never had to worry about those extremes with Tom.

Credible physician a Must for Treatment kenowi.com

Credible physician a Must for Treatment
kenowi.com

A catastrophic problem for the bipolar-disordered patient is that a psychiatrist will add medications to daily pharmaceutical regimes without taking other medications away. This continuous addition of pharmaceuticals is a widespread practice by psychiatrists.

My career moved Tom and I many times and this meant Tom had several psychiatrists in a twelve-to-fourteen-year period.

My husband was gone. He’d become a shell of the man I’d married. Over the years the medications damaged his internal organs.

Carmel, CA, Getty Images

Carmel, CA, Getty Images

Our spontaneous conversations were gone along with lingering over dinner at our favorite restaurants, walks along the Carmel, CA beach, trips to our favorite bookstores, discovering antiques and other activities. When Tom was taking the psychiatric medications he used a dull and monotone voice, rarely expressed an opinion and became a man with little energy who slept all day. Perhaps worst of all — the husband I knew was slipping away and he knew that I could see it. Tom had become defenseless.

A study conducted in Sweden involved 10,000 patients with two chronic diseases and 10,000 patients diagnosed bipolar-disordered. The results are alarming. Of the bipolar- disordered group, 6,618 of the 10,000 bipolar-disordered patients died over a decade sooner than the general population. Multiple causes lead to an increased mortality: cardiovascular disease, diabetes, COPD, influenza or pneumonia, unintentional injuries and suicide. There’s also a higher rate of cancer.

At issue here, even with the best health care available, medical doctors have many reasons why they don’t want to add bipolar patients to their practice. At least fourteen studies have shown that a patient with serious mental illness receives worse medical care than ‘normal’ people. Last year the World Health Organization called the stigma and discrimination endured by people with mental health conditions a world-wide human rights emergency.

The mentally ill that die early due to negligent physical medical care comprise sixty percent of recordable deaths in the United States annually. These patients die of preventable or treatable conditions.

A medical advocate must be aware of the mentally ill’s needs with vigilance. This is an exhausting role but one where the slightest withdrawal of attention to the total medical care and observation of the patient can turn to tragedy in a nano-second.

The diseases caused by Tom’s anti-psychotic drugs include:

Official Logo for 2014 Participants

Blog for Mental Health

Cardiovascular disease and Diabetes Type II. Sadly, diabetes is often the result of an anti-psychotic drug that only a few years ago received a black box warning that it could cause Type II diabetes. By the time the warning came out, it was too late for Tom. He was already coping with being a diabetic.

Tom was prescribed Lithium and while it did keep him out of the hospital, it also destroyed one-third of his liver. The doctor prescribing the lithium did not order the necessary blood panels Tom should have had during the time he was taking lithium.

Some medications used to treat bipolar disorder have been linked to an increased risk of death, but those with no medications to treat their disorder have an even higher risk of mortality.

A miracle occurred in late 2004 when we met Tom’s current psychiatrist. Tom was admitted to the hospital and detoxed from the twenty-seven psychiatric medications he’d been taking daily. At the time of this admission, Tom’s diagnoses included: Parkinson’s disease, Type II Diabetes, Tardive Dyskinesia, bleeding at the cortex of the brain and of course bipolar disorder. All of the diagnoses, with the exception of bipolar disorder, were a direct result of being over-medicated with psychiatric medications.

Once the twenty-seven psychiatric medications were out of Tom’s system, we knew he did not have Parkinson’s disease, Tardive Dyskinesia or bleeding at the cortex of the brain. Of course the diagnoses of bipolar disorder and diabetes II will stay with him throughout his lifetime.

National Institute of Health

National Institute of Health

The National Institute of Health (NIH) reported on October, 8, 2014 that, “Results strongly suggest that clinicians need to pay much more attention to promoting physical health in people with severe mental illness.” This statement has been needed for years. Unfortunately, doctors in family practice, internists and specialists haven’t embraced adding the mentally ill to their patient roster.

The results of the NIH study revealed treatment with anti-psychotic medication, even after brief exposure was associated with an increased risk of metabolic syndrome, which is a major risk for future cardiovascular illness. [Were the anti-psychotic medications Tom took for so many years responsible for his needing a pacemaker in 2007 and an emergency heart surgery a few months ago]? I believe they were. After all, the anti-psychotic medication is one his current psychiatrist tells us he does not need and there’s strong evidence to support that theory.

Tom had been hospitalized twenty-seven times in a behavioral health unit until we met his current psychiatrist. Since our fortunate meeting, Tom has not needed hospitalization. We are a team, the psychiatrist, Tom and I.

In addition to the psychiatric medications Tom took every day, he also took medications for high cholesterol, diabetes, low thyroid, sinus infection control, low Vitamin D and reflux.

Today Tom’s psychiatric medications are limited to three and his psychiatrist approves or disapproves any and all medications added to his care. We’re aware how a slight chemical imbalance can send Tom to a place where his medicine is no longer safe for him.

Thank you for reading with me. I always appreciate your support. The month of October marks the calendar as “Talk About Your Medicines” month. I’m honored that Judy Cohen, Outreach Coordinator with the American Recall Center asked me to be an extension of their campaign. Please visit their site at:  www.recallcenter.com/community You’ll find the medical information there written in a straight-forward manner and easy to understand.

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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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138 Responses to HOW SAFE ARE PSYCHIATRIC MEDICATIONS?

  1. Joe Fanning says:

    I read your post about how safe are psychiatric medications. I read that you wrote about how each day you began it by swallowing a handful of pills and injecting a shot. You mentioned that you get panic attacks from a brutal case of PTSD and this is why you take some of the pills.

  2. My cousin has schizophrenia and is on some HEAVY meds. He first was diagnosed in the Air Force when he said that he was abducted by aliens…who knows what’s true and what isn’t? It could be that he was involved in those secret experiments with LSD, but my research has fallen short of any documentation. I’ve always been pleased with his care, but he’s very lucky, I know. As his next of kin and trustee, I have an active role in his life, and we used to be such good friends before his life took a tragic turn.

    • It’s not likely you’ll find documentation on experiments with LSD or other unbelievable events. It’s taken subsequent wars to Vietnam for agent orange to finally be documented as a deadly influence to our military that had boots on the ground or were off-shore with supply boats. Along came the Gulf War and the soldiers were accused of being malingerers and now, two decades later we have a diagnoses. I wrote my first blog about the toxicity of burn pits well over a year before the Armed Forces recognized them as causing death by the number of diseases they caused.
      Your cousin is fortunate to have you in his life and as a caregiver. I know the hours of hard work you put in to keep him safe from harms way.

      • Thank you, he’s lucky to be at one of the best facilities, too, so I can rest assured he’s not being victimized in any way. I feel bad for those who don’t have the same level of care.

        • Yes, it’s a miracle that he’s in a first class miracle. Please remember, having you as an advocate and someone that knew him when is one of the most powerful elements possible in the life of an individual with a mental disease. Even when Tom has been in the best of the best facilities, I’ve heard families say as they walk away, “at least we don’t have to worry about them for now” and they never stay in touch with the hospital or come to visit during visiting hours. I’ve watched those patients with the look of fear on their faces. The look of wondering if they’ve been abandoned forever. Love is the most important element we have to give those we cherish who have a mental disease and you are at the top of the list in providing that love. Thank you for all that you do. I know it’s not easy and there’s not an exit sign where we can step off the road we’ve elected to take. God is there with us on the trip we’ve elected to take and we know he’ll protect those we love and ourselves. God bless.

  3. Hubert writes says:

    Hi Sheri’ i Just need to say that IMHO all psycotropic drugs are bad news! Im not a veteran nor have i been in the military, but I have a chronic disease which I have had from childhood, and have lived my entire adult life under the influence of it, and 3 mild traumatic brain injuries. That said 12 years ago now I tried, under the direction of a psychiatrist, I tried a few different psycotrop’s with terrifying results. I clearly see why Vets and others go the way of suicide when on these “MEDS” for short or long term!

    Sheri one thing I know… What we all need is love, I mean real hands on look me in the eyes give me a hug that means and gives life, none condemning, compassionate love.

    Thanks for what you do Sheri

    Respectfully Hubert Rondeau

    • Hubert – Thanks for your reading with me and commenting. I so agree with you about the anti-psychotic drugs and the matter of feeling the love and caring we give one another. In my opinion, there’s nothing worse than pretending to care about someone and then turn around and not be there for them. I fully understand how 90% of all marriages wherein one of the partners is bipolar ends in divorce. However, on the other hand, unconditional love includes going the extra mile and being there with the extended hand when the going gets really tough.

      • Hubert writes says:

        :However, on the other hand, unconditional love includes going the extra mile and being there with the extended hand when the going gets really tough.

        Yes and in this world of self,and instant gratification the commitments tend to vanish when the boulders appear in the roads ruts, rather than stopping and resting on them most flee to save themselves the toil and effort.

        There was a documentary on Youtube a while back i’d like to recommend you Sheri, I don’t now if its still there, i should re visit it myself,it is called, The Century of Self. It is quite lengthy but well worth the time as it clears up a lot of the troubles we have in society today. Thank you for responding to my commons today, and please feel free to visit my blog at:

        https://hubertsbest.wordpress.com

        Hubert

        • Hubert – Thanks for ‘The Century of Self’ recommendation. I’ve made a note to look for it after I’ve finished some other work today. When something is good, it doesn’t matter how long it is if the message has meaning and a magnitude of knowledge to support it.
          I visited your blog yesterday. I wanted to know more about you and read through some of your blogs as well as your about page. I fully intend to go back and read and comment on additional blogs.
          You didn’t have a way of knowing I’m on a break from blogging until the first of the year, but I pop in as time permits. My husband comes first and he’s had additional medical problems brought on by years of inappropriate medication.
          I invite you to read my blog Mental Health Care – Who Needs It? at https://sheridegrom.wordpress.com/2013/10/20/mental-health-
          At the bottom of the page you’ll find several links to other blogs you may find interesting.
          I’ll be back to read with you hopefully later today. I also share 9 TBIs and Fibromyalgia with you. Thank you Hubert and may you have a pain free and blessed day. Sheri

  4. bjsscribbles says:

    Great work look forward to coming back and reading more….I decided to follow so I can come back

  5. As a retired psychiatrist, what really makes me sad is the extent to which psychotropics can be reduced once co-existing medical conditions are treated and resolved and with healthy foods that provide essential nutrients that are depleted by psychotropic medications and the unhealthy lifestyles that frequently accompany mental breakdowns.

    The problem is that insurance companies won’t pay for fresh green leafy vegetables or fresh fruit, or oily fish (or even fish oil supplements). Societies that eat a minimum of 5 servings of oily fish per week don’t suffer nearly the rate of depression or bipolar illness the US does. Insurance companies don’t pay for psychotherapy either – they only pay for pills.

    The reason psychiatrists fall into the trap of prescribing multiple medications is they’re terrified of producing a relapse if they withdraw any medications before the patient has reached optimal stability. Ideally when a patient finds themselves on a regimen of more than 3 medications – and remains unstable – they should be hospitalized and have all medications removed in a safe environment.

    Insurance companies won’t pay for that either.

    • Medications only buy the insurance companies assurance that patients will NEVER reach stability in terms of emotional health and the ability to cope with life’s vicissitudes and natural changes…That is what meds do by their very nature. Psychotropic medications are not intended for true mental health and well-being but to deliberately induce chronic illness and disability and patient-hood in millions or people who will finally have been hoodwinked into believing they have a permanent and disabling “mental illness” that can only be “treated” never cured. Bullshit, I say. The emperor has no clothes!

      • Pamela – I hope this comment finds you well. I believe there are times when an individual needs medication and other situations when they don’t. It’s a fine line that’s difficult to determine between mental health and mental illness. From reading some of your blog entries, I know you have had some truly terrifying experiences with not only medications but so-called mental health care professionals who were nothing more than abusive.
        My heart ached that you had no one to serve as your advocate and demand proper care for you. I’ve taken Tom out of at least 6 hospitals AMA because I didn’t agree with what was going on (too many medications, abusive treatment by staff and my list goes on and on.
        I know Tom will need certain medications for the remainder of his life and as his wife and partner, it’s my job to protect him the best way I know how. One of the hospitals I removed him from was using Haldol and he was not out of control or making a scene. At the time it was injected, he was curled into himself and not making a sound and hadn’t said a word all day. The entry in his chart was that he had been loud and unreasonably noisy.
        Additionally, because of many life situations for myself, I have no problem with saying I’ll more than likely take an anti-depressant the remainder of my life and I also have PTSD. I trust my doctor and I trust my therapist.
        I know you are coming from a different set of circumstances but I encourage you to check in with yourself and also let yourself trust someone else to help bounce ideas around.

        • Sheri, I am trying to stay calm but I am NOT, not really (I haven’t spoken in two weeks for all that)

          Listen, most importantly if antidepressants helped at all, the suicide rate would go down, rather than up as it has! If ADs worked, people would be able to STOP taking them, not be on them the rest of their lives, because the directions for taking them advise to take them until one responds, then take them for 6 months, then STOP taking them. But of course no one ever really responds properly enough to stop taking them, do they, no. Because ADs induce the chronic depression that they claim to “treat” — and ditto AP drugs, I am sorry to keep saying things that you and your readers no doubt do not want me to say or to hear…But I will continue to reiterate this, that if the medications worked, you would be getting better not worse! PERIOD.

          Now I am not saying that PTSD is not complicated, or that certain conditions are not by their nature chronic, all I am saying is that DEPRESSION has been created as a CHRONIC AND INCURABLE DISEASE by the so-called antidepressant pills that are nothing of the sort, but only make matters worse. and anyone who has had AD poop-out and had to switch AD drugs knows what I am talking about,..If the AD drugs really worked they would WORK., period…

          Haldol doesn’t work because it doesn’t work, so why would any drug based on Haldol work, or be less torturous????

          By the way judging from my involuntary mouth movements I believe I now have tardive dyskinesia from the years of forced medication.Even though I have not yet entirely cleared the Abilify because that takes 2 weeks to get out of my system. (I stopped it cold as of three days ago, the moment I arrived here…)

          So what can I say, that I agree people should take these drugs and work it out with their MDs? No, in fact I do not think so. I think most MDs are either deluded or are outright LYING. and I will continue to believe this. I do not think that most MDs do ANY thinking or homework whatsoever and their profession would be so very threatened by what they might learn if they found out the truth that they have a stake, a HUGE stake in NOT learning the truth.

          I will say it once more, (Hah,): THE EMPEROR HAS NO CLOTHES, if you and everyone else wants to believe that this naked emperor is wearing royal robes, fine. But I see nothing but a fat hairy belly and a silly naked man running around like Oz, claiming to be someone he most assuredly is not.

    • Dr. Bramhall: Thank you so much for taking the time to reply. I’ve worked with all levels of mental health professionals and no one has ever told me about going back into the hospital for the 3 medication rule. We’ve always had 100% pay from our insurance companies and once I moved us to Blue Cross/Blue Shield I didn’t have a problem getting authorization for Tom’s admissions. It angers me to no end the adverse medical damage the medications have caused his body.
      Our insurance also pays 100% for prescription fish oil for each of us. We both take it twice a day as well as flax seed oil and a few other supplements. I know we are the exception to the rule when it comes to our insurance but I made difficult personal sacrifices in order to make the insurance available to us both.
      It’s interesting about psychotherapy. Again, BC/BS and Tricare together paid 100% of everything until I turned 65 and then Medicare stopped everything. My therapist and I have received her opted-out of the Medicare portion and she is now able to bill BC/BS directly. The sad part of this is that BC/BS will treat her as if she were a Medicare provider and take out the amount Medicare would have paid if she were a Medicare provider and then pay their cost share which will be around $30.00.
      Thankfully my therapist is a wonderful person and has continued to see me since Feb 2012 without charge. She will not be able to back bill BC/BS. My psychiatrist bills both Medicare and BC/BS.
      I’m thrilled we have a true working partnership with my husband’s psychiatrist. Each time any doctor prescribes a new medication for Tom, I call the psychiatrist to provide guidance of the medication being okay or not. My husband’s psychiatrist is a remarkable man and treats both of us with dignity and support.
      Much of my legislative action in the next 2 years will center around Community Mental Health Centers. Millions of dollars are being channeled into these facilities and none of the money is making it down to the patient level. I’ll also be working on legislative issues regarding Medicare & Mental Health and other issues.

  6. neighsayer says:

    when I say “responsibility for ourselves and our actions,” I want to be clear, I don’t mean us, the patients, I mean human beings. I mean our parents and caregivers, I mean each other. I’m trying to talk about the human reasons for many psychiatric problems, abuse and such.

    • Mr. Neighsayer – As an adult, I’m responsible for myself and my actions. Once I arrived at the age of majority, the blame line stops at our feet. Maybe we’d like to say I’m like this because I was treated so and so but that just doesn’t work any longer. The judge will still throw you in jail if you break the law. It’s long past time that we all stand up and claim responsibility for who we are and what we stand for. And, no we can’t expect that congress and the president will do the same thing.

      • neighsayer says:

        I’m going to reply to both of these answers at once – this last one was only the rest of my first comment anyways.
        First – I have created my own post elsewhere and started some conversations. I didn’t on WP here yet, but maybe I will.

        Second – I know people in the MH community understand where so many troubles come from – it’s more the pharmaceutical companies that maybe don’t – and many non-MH doctors, GPs etc., are passing out drugs too.

        Third – exactly. Abuse is the opposite of nurturing. I feel that if we could put the energy the pharm. companies put into drugs into actual nurturing, that would help a lot. Unfortunately, in this world, punishment and abuse are a parental right, and making changes to the nurturing we do is happening far too slowly.

        Fourth – I’m not advocating or anyone to stop their meds, nor do I think therapy can help by itself as much as we’d hope – that’s why my focus is on nurturing children and stopping abuse – which I believe requires stopping ALL punishment. Yes, when we’re adults we need to take responsibility for ourselves, but if we’re still punishing our children, we haven’t taken responsibility for ourselves and we’re still protecting some idealized idea of our parents.

      • These were interesting comments because if we take responsibility for ourselves and our behavior we also must take responsibility for how we treat others, all others, and for the effects we have on other adults, when they are adults. I mean this most particularly when these adults are the ones under supervision in prisons (or inmates in mental hospitals.) I maintain that our behavior is responsible, and indeed blameworthy, for our abusive treatment of miscreants in society, i;e; the so-called rule-breakers whom those judges have thrown either the book at or into jail and it has a profound effect on them that we ignore or pretend are simply and wholly “their fault” at huge risk.

        Abuse and responsibility for abuse doesn’t stop with parenting after all. We know this from the general disgust on the part of the American people to what came out of Abu Ghraib. But few people are aware that such brutality — dog leashes included — such routine atrocities were exported wholesale from what happens every day in American prisons, where no one thinks twice about any immorality involved in exacting humiliation or revenge or even the undesirable consequences resulting from such practices.

        In fact, we brutalize prisoners (and mental patients, whence my experience) at our peril, not least because most prisoners are eventually released into society and ditto patients. I am not saying that we should all stand up and point fingers at this person or that person who is to “blame for who I am” not at all. What I am saying is the precise opposite: We need to take MORE responsibility for how we affect others because in fact our effects on others is so very large and we can in fact be blameworthy, whether or not they know enough to point the finger directly at us.

        Society needs to stop condoning abuse in all its myriad forms wherever it takes place, abuse of adults as well as of children. There is simply no place in civil society for punishment, certainly not for the sake of revenge. And I would maintain that as soon as we stop taking the attitude that pure punishment solves any social problem, and start looking at ways to use positive re-inforcement even for the worst of the worst, even our most intransigent social ills will find solutions and resolutions heretofore never dreamed of. You simply cannott find better methods than kindness and empathy and understanding as ways to changie people into better people, whether young or “old enough to know better.”

  7. neighsayer says:

    I’d have to guess that medication for mental and emotional issues indicates victory on the part of the “Nature” (over Nurture) crowd, which suggests a denial of the power of human interactions to cause our problems. Which, ironically, goes to a denial of science, because the “Nature” argument is based in the idea that we are what we are, because we’re “just born that way,” which comes from “the way God made us” kind of thinking.
    Medicating is an attempt to modify our “Natures,” and as such, although it sounds like biochemistry, which sounds like science, it still adds up to denial that what what happens with our minds and our lives is mostly what we are doing to each other in the here and now, meaning it still adds up to us not taking responsibility for ourselves and our actions, as though there were some other agency to blame.
    So, “sciencey” as it appears, I kind of see it as psychology avoidance, and therefore really “thought avoidance.” Nature over Nurture crap – which again, indicates the presence of religion ultimately, not human science.

    – hey! That might be some ‘outside-of-the-box’ thinking that deserves it’s own thread some day . . .

    • Mr. Neighsayer – I can’t speak for others that follow my blog but I can speak for myself and on most subjects my husband and I agree.
      I haven’t come into contact with anyone in the mental health community that denies the power others have and how that power is misused. Let’s look at the epidemic of child abuse. There’s nothing nurturing about the act(s), the child did nothing to deserve it and God holds the perpetrator in contempt.
      Another example is the power an employer may inappropriately exert over an employee. There’s nothing Godly about this human nature.
      Individuals who have been harmed by others in so many different means there’s so many we can’t count them all, I cannot place mental illness in the ‘God made us this way kind of thinking.’
      Many of us are the way we are because of a past event(s). However, those that have chosen the tough road through the wilderness with mental health professionals at their side and even pharmaceuticals, inevitably turn out to be better people. Had I sat on the injustice(s) in my life instead of working oh so hard to move on, I would never have had a successful career, become an advocate with successful legislation passed, had successful personal relationships and friends, and the list goes on. I would never have experienced any of these positives in my life if I hadn’t done the work with mental health professionals and a few psychiatric medications along the way.
      The outside the box thinking you mention in your post is more than likely a thread you might want to start on your own blog. I’m down to earth and believe in what works and what doesn’t work. Thank you for sharing your views. Sheri

  8. 1EarthUnited says:

    Reblogged this on 1EarthUnited and commented:
    Bipolar disorder has become a serious condition in this country and sadly drugs may alleviate the symptoms but cause health problems. Sheri, I’m so sorry to hear about your family’s failed health care. I came across a great article when I googled “bipolar and nutrition”.
    http://www.huffingtonpost.com/dr-pamela-peeke/bipolar-disorder_b_5578079.html
    Thank you for sharing your story, it may help other people have hope.

  9. Reblogged this on WAGblog: Dum Spiro Spero and commented:
    My only addition to this article is to answer this question “How safe are Psychiatric Medications?” with a resounding, “Not safe at all!” And then to ask the even more important question that the USA FDA doesn’t ever ask: How Effective are Psychiatric Drugs? That should be the fundamental question but I don’t think anyone dares ask it let alone answer it honestly, not at least someone without a large stake in the answer.

    I challenge anyone to ask and answer that question next: How EFFECTIVE are our psychiatric medications? It would I think be extraordinarily difficult at this point, at least in this country, even to think about such a question, so set are we in our thinking about such things that we cannot even begin to consider the notion that perhaps these drugs were NEVER effective ever, or no more effective than just placebos all along. It would take extraordinary courage to acknowledge that it was always the doctor/patient interaction that mattered more than anything, this and the natural history of each mental or emotional disturbance,..In fact, I have yet to meet any single person who would consider this to be a possibility…But oh how refreshing it would be were that person to step forward!

    Anyhow, this reblog is very interesting indeed, and as good a place to start as any in a reconsideration of how safe such meds really are.

  10. heila2013 says:

    Thank you dear Sheri for this valuable post.
    Firstly, it is so good to hear that your husband is now in good psychiatric hands.
    The subject you raise is one that preoccupies me very much. I am worried about the possible long-term side effects of the anti-psychotic medicine (Seroquel XR) my son, diagnosed with schizophrenia and OCD, has been taking for over two years now. Lately his OCD, not the schizophrenia, has become so bad that I ask myself if things could get much worse if he would stop taking the pills altogether…
    I hope it’s ok with you that I re-blog your post on my blog.
    All the best,
    Heila

    • Heila – I’m honored that you believed my blog was worthy of being re-posted. I’m convinced the side-effects of medications are as dangerous as some of the diseases they are meant to help (not just the psychiatric meds). I thought I could put my hands on a web site I came across in just the past few days while researching something else. It was one of the best I’d seen in being easy to navigate and up to date. I’ll come across the site [I need it for a grant I’m writing so will have to find it]!
      More and more literature is pointing to a team effort in treating any medical condition. Are you your son’s medical advocate or is someone else in the way? Please feel free to e-mail me the answer if you aren’t comfortable answering it here. If you are the ‘advocate or adult’ in your son’s life that deals with his mental condition on a daily basis, you have the absolute right to ask for a consultation and seek a different treatment for the OCD. Sheri

  11. Angie Mc says:

    Sheri, you and Tom have worked so hard, so very very hard. Thank you for sharing your experience and HOPE that with the right care you CAN be healthier and happier. So frustrating and sad, really, that those who need care must advocate for themselves and have others advocate for them with great tenacity and patience.

  12. inesephoto says:

    Sheri – it is a blessing to have a good psychiatrist. You are a team working together, all three of you. I wish you a peaceful week and a good measure of little joys of life. Hope your back yard garden is still providing you with some joys:) October is such a beautiful month. My best wishes
    Inese

  13. Luckily, I only take a few vitamins. All those side-effects — geez. Sometimes they are worse than the thing you are taking the meds for. Thanks for being such a great voice here in cyberspace.

  14. Jay Holmes says:

    Hello Sheri. Thank you for your important article.

    If we wish to know how leprosy patients were treated in the 1800s we need only to casualy glance at how psychiatric patients are treated in the twenty first century.

    “The National Institute of Health (NIH) reported on October, 8, 2014 that, “Results strongly suggest that clinicians need to pay much more attention to promoting physical health in people with severe mental illness.” Give the NIH the Gold Medal for understatement. Let’s be honest and expand “severe mental illness” to “any mental illness, vague rumor of mental illness, and patients misdiagnosed as having a mental illness.” The term “mental illness” is often used as a carte blanche for delivering bad health care or no health care.

    Compared to other medical specialties psychiatry remains in the dark ages. It is often said that mental health patients are treated as “second-class-citizens.” That is wildly optimistic. Most mental health patients are treated far worse than a “second-class citizen.”

    From what I have witnessed a large portion of mental health providers themselves are the biggest offenders at stigmatizing and stereotyping mental health patients. I do some volunteer work with PTSD vets. Even in the VA medical system some of the nurses and doctors fail to respect mental health patients. I have watched a few doctors and nurses respond with obvious fear to PTSD vets in cases when fear was completely unwarranted. More often the caregiver applies a lower standard of care when the patient has any diagnosis of any type of mental illness. Bare in mind that the VA medical staff has, in my considered opinion, by far the best attitude overall toward their mental health patients and toward all of their patients. It’s a steep roll downhill from the VA medical system to other medical systems.

    I salute anymental healthcare provider that is doing a good job. They do it in spite of the lack of a functioning mental health system.

    I hope that you and your husband are able to receive the respectful and professional treatment that you deserve.

    • Jay – Thank you for your terrific comment. You understand the frustration of every individual that’s fought for proper medical care for someone that has a mental illness diagnoses. I thought we had finally wrapped up my husband’s new team just this past month and had a new cast of players just right for him. However, players seem the operative word.
      We do have the best psychiatrist Tom has ever had and he’s at the VA. I would be the first one to say ‘no-no, he’ll never receive care from the VA’ but it’s the best care we’ve received ‘Ever.’ I also say ‘WE’ because the doctor includes me as an equal member of the team and has from the first day.

  15. Dear Sheri,

    Wow, what a mess. and so very familiar. What bothers me is the conclusion that you and your husband were told and everyone is told these days, and why not, since after being medicated it virtually becomes true, that bipolar disorder is a LIFELONG disease. Do you know that it, bipolar illness, once was very rare, and people were almost never hospitalized for it unless in an uncontrollable manic state? Usually they might be manic once in their lives and never again. It is apparently ONLY since treatment, bah humbug, became available that, like jn schizophrenia, bipolar became an always chronic and weirdly unremitting disease. I say weirdly because the hallmark of bipolar was ALWAYS its remitting nature. How soon we forget, how soon we forget.

    Nevertheless, I wish you so very well. And your husband. I am trying my best to reduce and get off so-called anti-schizophrenia drugs i have taken all my adult life, into my 60s because I no longer believe in them, and belief is everything. No research was ever done to show the drugs work, after all, only MARKETING research to prove that they could be sold to a credulous public, Well I was duly credulous and took and took them, but no longer. Come hell or high water, I’m going to see what life and my poor battered brain is like Unmedicated…Wish me well?

    Blessings on your house and family.

    Pamela Spiro Wagner

    • Pamela – I wish you the best in experimenting how life will be without your medications. I hope you have someone on standby should you need assistance. Not the type of assistance where they would go against your wishes but someone who would keep you safe. I wish you the best.

      • Thank you so very much for those wishes. That is precisely what I wish for. The “only way out is through..” as the song Baptism By Fire has it. And I believe that. I do not believe I will be whole until I can get through unmedicated to the other side…But I need to do it safely or I might not survive the journey. I think you grok this. But most people would tie me up or medicate me rather than make sure Is stay safe along the way until I get to where I need to be…Thank you again.

        pam

        • Pam – I’ll be praying for you every step of the way. Please tell me you aren’t going cold turkey all at once with your medications. I understand how much you want to be medication free. [Trust me, I understand from the bottom of my heart]. I have your well-being in my thoughts. Coming off the meds (as toxic as they are) is tough going and I’m sure you are aware of that by now. Have you checked the guidance with each medication on how to stop taking the medication. I understand you are determined to go through with this and I’m not trying to change your mind. I do however want you to be informed and please, please have someone that cares about you close by. You remain in my heart and in my prayers. Sheri

          • whoo, boy, does that open a can of worms, and not to worry you, but who around me would actually support me in this? And who would be by my side in my doing this? I cannot say who…I mean, I have not spoken a word aloud in 6 days, and already people are wondering what is going on while they might, do they have a right to assume that it is the meds? They are telling me I need meds, but why? Who am I bothering and why won’t they just let me be? And why not help me through it rather than panic? This is really bothering me. I need to do this or I will die trying. and they will be the ones to kill me I know it. Anyhow, I won’t say more than that I am still on SOME meds, but I cannot do a thing without the whole system going against me! I need to hole up somewhere and just be alone from the looks of it, because I sure as shooting don’t have the support I need from the people around me. And this is only half-way into this, medication wise, there is yet another antipsychotic drug I have not even started withdrawing from…!

  16. jbw0123 says:

    Twenty seven medications. Unbelievable. Thank goodness Toms physician — and you — got him detoxed and on a simpler, healthier regimen. So much to learn about this difficult illness.

    • Hi Julia – You are so right when you say this is a difficult illness. Tom’s psychiatrist agrees with me that something medically is going on with Tom but his team of doctors are playing the game of ‘that’s not my job.’ The psychiatrist called me yesterday to see if I’d made any progress and when I had to say no, he asked to see Tom this coming week and said he’d try to make something happen. The man never ceases to amaze me. I’ve never worked with such a caring physician. He’s the reason we cannot move to the west coast and 100% of the reason we live where we do!

  17. A MOST important post, Sheri. Even with close blood monitoring, Lithium started causing kidney damage for me. Another issue: EVERY medication I’m on is labeled “Can Cause Drowsiness.” I am fine if I keep busy, but I get TERMINALLY drowsy when I just have to sit and be a passive listener (as in a meeting, in church, or as a passenger in a car).

  18. Sheri, there is little to add. My heart aches for both of you. I have long been an advocate AGAINST drugs for a number of medical illnesses. I rejected many of them as I became older and was told I needed something. I read all the contraindications and am shocked that these drugs made it to the market place.

    It is a catch-22 for so many in mental health. The drugs given often have such serious side effects that many patients stop taking them, opting to take their chances with an episode.

    Sadly, there are no easy answers. Hang in there, dear one … we can never know what else is on the horizon or around the next bend of the road … for you and Tom … I hope that is a solution that eases your burdens 🙂

    • Florence – Tom’s psychiatrist is a leader in treating bipolar patients. It’s a crime he’s been promoted so many times, he’s now a paper pusher and not an oh so valuable doctor. We are blessed in that of all the patients he was seeing on a regular basis, Tom is one of the two patients he continues to see (on his own time). I have his private cell number and know I can call him any time day or night. He has never failed to return my call within 30 minutes. If Tom needs to see him, he finds the time and we meet. Now, if I can hold Tom’s physical body together from all the damage from the years of medication abuse. To think, Tom was not taking a single medication when he retired from the military. Not one!

  19. Lignum Draco says:

    It sounds like you’ve found a good psychiatrist.

    The trouble with anything in life, and medications, is that there are risks and benefits. Without the medicines, would Tom now be alive? It’s a narrow path to the right formula, and none of us are immune from the effects of disease and side effects. Medication errors and interactions can be very dangerous, as you’re pointed out.

  20. Denise Hisey says:

    I’ve witnessed several people fulfill the adage “sometimes the cure is worse than the illness.” Mental health continues to carry a stigma doctors are not immune from. I think it’s part of the reason mental health patients aren’t given the full attention others are.

  21. Sheri, I’m so glad there’s a more positive situation now with the new psychiatrist, but it’s appalling that the health problems Tom has were likely caused by medication. If having to rely on medication wasn’t traumatic enough, to discover that it’s actually doing more harm must be devastating.

    • Andrea – Yes, Tom’s health problems hang directly from the many powerful psychiatric medications he was prescribed over the years and now we know, many of them were unnecessary. Our relationship with his current psychiatrist started in late 2004 and I’m thrilled we were lucky enough to be included in his round of care. We were first introduced through tela-medicine and after that first introduction, all appointments have been face to face.

  22. Excellent information. We must always be proactive in our own health care. I will definitely talk to my son about this.

  23. Unbelievable. The right hand doesn’t know what the left hand is doing, or doesn’t care. Too much trouble, So good to hear Tom is now getting better care and less meds. And you, dear heart, I am amazed at how much you accomplish in spite of your own health difficulties. ❤ ❤

    Do doctors get a kickback from pharmaceuticals the more drugs they prescribe? Is this the bottom line?

    I remember my father, about 30 years ago, was given one medication on top of another (about 12 or so) because one cause a problem and the next was to balance the problem. From that time i realized how 'careless' prescriptions are not evaluated together and eliminate unnecessary ones After a while, the accumulation of varieties of drugs appears to be forgotten.

    • Tess: One of the problems we have is that Tom has a total of 17 board certified physicians on his medical care team. Each physician is responsible for a specific disease spectrum that in and of itself could be considered catastrophic. It has taken me 9 years to put this team together and I still occasionally fire someone and then go through the interviewing process to find someone better to cover the disease and that will fit in with the other doctors. For, as you said, they all have to know what the other doc is doing.
      A perfect example is that his ex-cardiac care team (top rated in our area) did not tell us Tom had total left-branch blockage and needed heart surgery to resolve this issue. This is the surgery commonly called ‘the widow maker’ because the patient doesn’t have chest pains. The old cardiology team wouldn’t fight through Medicare to get the okay on the surgery and the new cardiology team said, “Medicare, what do they know about medicine and what the patients need. We’re going to surgery to save this man’s.” And they did! It seems to be a continuing process of checks and balances.
      A new bill has been passed and I’ll blog on it in a month or so. It’s called The Sunshine Act and the purpose it to let ordinary individuals find out which doctors are accepting ‘goodies’ from pharmaceutical companies and other medical sales.” Tess, I always appreciate your comments – You take the time to give me added thoughts that I haven’t covered and that I need to cover within my blog for everyone that may wonder about the same question. Thanks so much Tess. Sheri

      • Sometimes a point seems like it should be simple. Maybe it’s the difference between our medical systems but you know what, what used to work well here, may get spoiled. I hope not.New doctors are beginning to offer private surgeries for those willing to pay. They say to elevate the stress on hospitals but this is only the beginning and I am afraid.
        Still, the major problem is everyone know what everyone else is doing. Heck, it’s all supposed to be computerized now. What is the stinking problem?

        • Tess – I’m afraid Medicine has become more about who has the most money and little else. We have a few health care providers who genuinely give their all to provide appropriate care. With the implementation of the Affordable Health Care Act (Obamacare), we’ve also seen many new models of healthcare crop up. None of the new models are performing with stellar reports but I think it’s to early too tell. We now have the doctors who take no insurance and for a flat fee provide you all of the medical care you need for a contracted period of time. Then we are looking at so called health care homes which are different than nursing home. The health care homes are for healthy people. I haven’t researched all the new models. The only thing I’m confident of is that change is coming.

  24. willowdot21 says:

    Sheri I feel for you and Tom. This medication situation is so bad I am appalled to hear that they have just lumped medication on top of medication. I am so shocked to think that do not care what has been pre prescribed. Shocked but sadly I am not surprised. I do not want to turn this around on to me but I feel I have to say this.
    After I broke my back four years ago I was in hospital a month and had two operations, in the next two years I had another two ops. While I was in hospital my pain was managed by a senior nurse dedicated to pain therapy for all patients on the wards I was shunted around to! ( and I was moved around a lot!) I was too distracted though and drugged with morphine ! They were building up my meds, I was on 3x300mgs of Tramadol three times a day , 3x300mgs of Pre Grabalin three times a day, 2x Adcal D3 1 twice a day. plus morphine oramorph. Within a year the pain clinic had changed me from Pre Grabalin to Gabapentin which is the mother of Pre Grabalin… but they miss informed me on how to change from one drug to another and I ended up on a 6week withdrawal. Most definitely the most frightening , painful and simple awful six weeks of my life.
    To cut a long story short I ended up with the GP adding pills to the basic prescription , as you say layer on layer. Cyclizine 50mgs 3x a day to stop me feeling sick every morning, Laxido to help me go to the toilet,Omeprosole 20 mg 3 xa day, and so it went on these were physicians adding on and on! After three years after asking my GP for help to reduce my tablet regime I asked my local pharmacist if he would help me, luckily he helped me with a cut down regime. After eighteen months I now take one each Tramadol and Gabapentin 300gms morning and night , 1 Cyclizine 50mgs, 1 Omeprosole 20mg,1 AdcalD3 morning and night, and one Lercanidipine a day because I have since developed high blood tension.
    I know for certain had I let them the Drs would of just left me on the huge dosage of pills that I was on. A zonked out confused zombie. I feel pain mostly all the time, I get tired and irritable but I am me and I am awake.
    That said I think I am saying that it is awful that doctors are happy to keep us quiet with pills and potions. It is all wrong Sheri I shuddered when you mentioned how many pills and how many side effects they have . I pray you can retrieve your real Tom, I pray you can get through all this stress Sheri!! With love and hugs. xxxxx Please forgive me if I have gone on about me I wanted to show you I do empathize though I do not suffer as badly as you do! xxx

    • Please never apologize about making a reply about something that’s happened with you and the impact it’s had on your life. We’ll all be able to learn from you. Pain pills are distributed the same as anti-psychotics here in the United States and often with little over-site. You are right, also, about so many of the doctors wanting to keep patients quiet. I have a dear friend in pain management and I often feel as though she’s pushed through the system as if she has no say of her own and she doesn’t have an advocate as I’m too far away. My neurologist wanted to turn me over to a pain doctor but so far I’m saying no. I’m taking 1/2 of what the neurologist prescribes. I’d take the entire amount but they make my mouth so dry I cannot chew food or swallow and that brings on another problem all together. My prayers are with you. I do know what you mean about the pain always being with you. Indeed, it never goes away. I can become angry really fast when I stop and think about how about 2/3 of my chronic pain is the direct result of surgical error.

  25. It takes a lot of courage and strength to write about what happened and is happening to both you and Tom, then putting it out there to help the rest of us. I want to thank you so much for telling us your two stories. As you know, my teenage daughter is on Wellbutrin (after taking Prozac and experiencing what ONE doctor informed us is called “Prozac Poop-out”) and also Abilify. I used the link in your post to check out these drugs and read some interesting information about the anti-depressant. I’m glad the doctor changed her from an SSRI to a plain antidepressant and it’s so hard because these pilla are still newish for teens.
    It takes a lot of true proaction on the patient and family’s part in order to make SURE that the patient has a team behind them, asking the appropriate questions and making sure to get the right answers and then watching, watching, watching to make sure to be aware of side effects. Tom is so lucky to have you, Sheri, and vice versa. You’re a great pair, so loving and caring.

    • Patti – You are doing all the right things to help your daughter. The more you educate yourself, the more you can be her advocate. Psychiatric drugs are a new frontier for teen mental health management (the opposite of what doctors tell us). There’s so much we don’t know and then top that with every individual reacts differently to a medication.

  26. arlene says:

    Sorry to hear about this. Reading your blog makes me remember the times when my dad had his dialysis.

  27. kanzensakura says:

    It never ceases to amaze me, the stories of real people and the horrible, real incidences in their lives. My depression is a slippery, slidey, painful thing, especially physically. MD will prescribe one thing, and then another and then back to the original…and then there is the woman in my husband’s Sunday school class who at first was depressed, then bipolar, then hospitalized, then stabilized, then hospitalized…then developed so much pain, she could barely breathe, then could hold nothing in her hands, then constant migraines, then in and out of the hospital. Several years and after all of that, their latest psychiatrist realized…she doesn’t have a mental disorder – the wrappings around some of her nerves are coming unwrapped! She decided to do different types of scans because the mental illness responded to nothing. And why? She has a nerve disease. And tgen, with Tom…Sheri, it is incredible how the two of you have survived and how the love goes on and that joy can still be had in your lives. One of the scariest words in our vocabulary is “intragenic”. The more I learn about drugs, the more I want to protect you all, out there in the real world of life.

    • It’s interesting to me how often a physician will decide a patient has a psychiatric problem when they are unable to fit them into a nice neat box. I also believe the prescription pad comes out all to often when the doctor doesn’t know what else to do. I’m more familiar than I want to be about the unwrapping of the nerves of the woman in your husband’s Sunday school class. The nerve damage caused by my surgery in 2012 has caused the same issue and it’s not a lot of fun.

  28. gpcox says:

    Sheri – you and Tom are two of the strongest people I’ve even known. You both have my deepest admiration. Please give a shout-out to Tom and my hopes of his improvement; yours too young lady!!

    • Hey, G.P.: Thanks for stopping in and leaving a comment. You know I always love to see you. I found myself in such a terrible mood today, I decided the best cure was to go play in the dirt and off to my garden I went. It was the perfect cure for what ailed me and I didn’t have to get a prescription! I do hope all is well in your world. Sheri

      • gpcox says:

        Things are fine here; tho I do believe I’ve created a monster…I no sooner think my research is complete for a specific period, when lo and behold someone asks a question or mentions a relative or I remember something out of the blue and poof – I’m in the middle of something I hadn’t heard about – and you know I just won’t stand for that – SO…the research starts in again.
        Hoping to get to the Morikami Museum this week, but I’m not certain that storm in the Gulf is going to be cooperative – we’ll see.
        All my best to Tom, the Vets and volunteers – and YOU young lady – relax and take it easy more often!!

        • G.P.: Yes, I know exactly what you mean about the research chasing you when you’re convinced you’re caught up. Hope you’re able to make the trip to the museum, that would be awesome. I’m planning on taking a bit of time away in the not to distant future. Our weather has been holding much the same as weather in Carmel, CA that we had year round. Now is perfect gardening weather but of course old man winter will be coming in a month or a little more. Sheri

  29. Gallivanta says:

    Glad everything is working out much better now. I don’t think this sort of situation would happen here (could be wrong) because our drugs are tightly controlled by a central authority called Pharmac. Unfortunately, Pharmac’s role is being threatened by the Trans Pacific Partnership Agreement (TPPA), currently under negotiation, which could remove much of Pharmac’s power, and put it in the hands of international drug companies – http://www.stuff.co.nz/the-press/opinion/perspective/9808666/Trade-deal-may-threaten-NZ-health-care Good to know that October is talk about medicines month…. I have been cleaning out my medicine chest. 🙂

    • Cleaning out the medicine cabinet is something we all need to do. I rotate it the same as replacing batteries in smoke and gas alarms. I often wonder what the price of all the drugs would be, and then remember to say a pray that they didn’t have to go into our bodies.
      We like to believe medications are tightly controlled when a central agency is in charge. However, I’ve seen this situation abused far too many times. An example is the military. We should be able to account for all medication going into each and every military unit and how it’s dispensed but we cannot. The same is true of governments that sanction medical care. I saw it happening in Germany when I lived there and again in France and Italy. Pharmaceuticals are probably the hardest item to control in any medical environment.

  30. Marie Abanga says:

    Reblogged this on Marie Abanga's Blog and commented:
    ” The National Institute of Health (NIH) reported on October, 8, 2014 that, “Results strongly suggest that clinicians need to pay much more attention to promoting physical health in people with severe mental illness.” This statement has been needed for years. Unfortunately, doctors in family practice, internists and specialists haven’t embraced adding the mentally ill to their patient roster “. I save my breathe and wrath!!!

    • Bibiana Taku says:

      Sheri, I am glad to know that you have finally met a Psychiatrist who has a “heart” and is willing to work with you and your husband as a team. This is my point and my opinion about care-giving to the mentally ill. I believe that the family ought to be closely involved in view of the fact that these are people with special needs. I never got so lucky with the case of my son Gabriel. He had to take 3 mood stabilizers 2 times per day plus an anti-epileptic which, I suppose also “stabilizes” the mood and a stool softener each of them also 2 times per day. Each of these drugs has side effects which are life threatening!. The sad part of it is that once Gabriel started experiencing the side effects of the medication and stopped taking some of them, rather than review the medication he was assigned 2 nurses: “the morning nurse” and the “evening nurse” to ensure that he takes the medication. The family was completely shut out of any discussions concerning his treatment and side effects of the medications. He was rushed several times to the emergency without his proxy being informed. When he developed apnea, overweight and hypertension, I raised a “red flag” with his medical team, requested for a conference but was shrugged off on 16th June 2014. On the 2nd of August 2014 my son was found dead near his medication box and the frozen food that had been brought to him by his case manager! Someone asked the question whether some of the prescribers receive commission from the pharmaceutical companies? I am tempted to think so as well. My son’s life hung on the blade partly because of the side effects of medication which his 2 Doctors were un-willing to review. Why won’t they review if they did not have vested interest? My son is dead and buried but I am thankful, Sheri, for your husband who has found a Doctor who has empathy and is also willing to work with you and your husband. That, for me is part of the solution to the paradox of the “willful” misinterpretation of the “rights” of mental health patients which in actual effect is the “right” of the Psychiatrist and the care-giving team to abuse the right of the patient to live and with impunity!

      • Marie Abanga says:

        Dearest mama,

        I cannot agree any better with you and I know that through his Foundation, we would do our mite in fighting all such injustice. I also join you in wishing Sherri and her Husband well. Loads of love, Ayo

      • Babiana – I apologize for getting my replies out-of-order. You’ve been in my prayers and in my daily thoughts. The situation your son was in is tragic beyond compare. It angers me beyond any civilized action. Gabriel didn’t have a chance if his doctors didn’t know what he was being prescribed. Is there a chance your son died in a hospitalized care environment. The reason I ask is that you wrote the medical team refused to have a conference with you. There’s a federal law requiring a medical team to meet with, at a minimum, the care provider of any psychiatric patient. I’ve often encountered situations wherein I’ve had to fight for these meetings and have been less than diplomatic about Tom’s and my rights. Doctors, nurses, medical establishments and others are used to browbeating those who honestly care about the patient. I learned early on I would never accept the answer no. Involve your Congressman and Representatives if required. I encourage everyone to become a mental health care advocate. It’s easily done through each state’s NAMI office. Let your state and national representatives know what’s on your mind because someday you’ll need their help and you want them to know who you are.

        • Bibiana Taku says:

          Sheri, thanks for your prayers and advise. Unfortunately Gabriel was found dead less than two months after my concern was not addressed!
          I agree with you that every patient need an informed advocate. All I am left with is to share my experience so as to keep others aware in case something can be done to save their loved ones.

    • Marie – Thanks so much for the reblog. I sincerely appreciate it. Sheri

    • Marie – Thank you for reblogging my post. I sincerely appreciate your support. I thought you’d appreciate the report by NIH!

  31. Oh wow! All the side affects from the meds we take it’s enough to make you want to stop but you can’t. I hope Tom is doing much better and you are well. That is very important that you stay well! Huge hugs to you!

    • Michelle Marie: All those meds really are something to think about, aren’t they. What concerns me is when one part of our bodies go bad (for me it’s my stomach) and I have a handful of meds for that issue alone; here comes another handful of meds to take care of the other meds I’m prescribed. I often wonder which way should I go but then the alternatives aren’t exactly what I want either.

      • Oh Yes they are for sure! So hard to know what to do! I think we have to so what we can to get along but its sure not fun!
        Today I have in and went on an insulin pump! Not a fan of it at all! In fact I have mixed feelings! 😜

        • MichelleMarie – I’ve heard good things about the insulin pump so I hope it serves you well. It’s never fun when we have to deal with anything extra, is it? I have a hard time keeping my blood sugar high enough. It’s such a delicate balance. For years, I really had to count my carbs and now it seems I have to chase them down. Is there a chance you’ll be able to paint your pump pink? With love, Sheri

  32. M-R says:

    It’s not really a post to ‘like’, Sheri – except for the wonderful occurrence of Tom’s finding a good psychiatrist … My beloved second-eldest sister was a psychiatric-medication junkie, I sometimes think; and I’m pretty firmly convinced that she died of MND because she had spent the previous 10 years (at least !) on prozac.

  33. Thank you, Sheri, for sharing Tom’s story. I am glad to hear that your husband’s current psychiatrist is doing a great job.

    I’m awaiting my latest labs. Now that I’m taking both divalproex for mood stabilization and Lipitor for high cholesterol, my risk of liver damage has increased. Scary.

  34. mihrank says:

    wow – sheri – no words can be add, this is deep, powerful and highly explained. I wish I can own a news network and I will ask from you to deliver your message live. I love you!

  35. ksbeth says:

    wow, sheri. it is scary to think that the medications can do more damage than the issue itself. it must be a constant check and balance and weighing out of the lesser of the evils. all while working with a moving target. this is such a dilemma and it is scary to think about those who have no advocate. lucky you have been a strong advocate for both of you, and i’m so happy the current psychiatrist is part of your team and a partner in tom’s wellness. and your own as well, as his advocate and caregiver.

  36. It’s such a fine balancing act to find a right diagnosis, treat it accurately, and then watch for side effects of the medications and not mistake them for new symptoms of something else. So glad Tom is being taken care of, after the hell he (& you) have been through. Love to you. Paulette

  37. The Poetry Channel says:

    Sadly all pharmaceuticals are toxic to the body. Most destroy the liver directly or indirectly. What a nightmare. I’m glad to know Tom is doing better. I hope your dog (Sorry, I always forget his name) is better these days too. Take care of yourself, Sheri. Sending healing thoughts & energy.
    Peace,
    Michael

    • Hello Michael, Thank you for stopping in. The days glide by and I wonder how I’ll find the exact care Tom needs. I don’t have to worry about the psychiatric component but the physical component leaves me baffled.

      • The Poetry Channel says:

        I’m well aware that it is a monumental challenge for you. Best of luck. It’s a shame society is failing so many faced with similar issues. My heart goes out to you. Peace.

        • Thank you, Michael. I’ve been watching your poetry evolve and at night I read passages to Tom as we are drifting off to sleep. Just when I think it’s time to blow out the candle, he always, with his boyish grin, says to me – “Just one or two more.” You have grown so much since I first started reading you poetry.

          • The Poetry Channel says:

            That is very sweet of you, Sheri. I’m thrilled to know Tom enjoys my poetry. I’m sure hearing it read in your loving voice takes it to a level far beyond my writing skill. That brings me a lot of joy and peace.
            Take care of YOURRSELF too. I have every confidence that you will, but want to send a gentle reminder.

  38. Terry says:

    I don’t blog about my brother and his medications only because it upsets me so. My brother was mentally challenged. The work that the brain had to do and the emotional teasing through his years proved to be a part of his early death. The medications he was put on because of his outbursts and the MSA did him in. Each medicine causes a side-effect. The circle of meds begins as we have to have another medication to over take the side effects. I swear if I get a terminal illness, I will NOT use Western medicine. Instead i will use Asian or herbal treatments. The body can fight off so many diseases if only Western medicine doctors didn’t believe in pushing pills. I better be quiet now, or you will drop me as a blogger friend

    • Terry, I would never drop you as a blogger friend and I do mean – never, ever. I hear what you are saying and the pain behind it. The purpose of my blog allows everyone to speak freely on the subject open for discussion. I totally agree with you in that many medications are worse than the disease they are supposed to be treating.
      I encourage you to write about Al and the time you were together. Writing helps us move beyond some of the pain. We’ll always have the pain but it helps to share it when we can.
      On another note, I’m also a diabetic as is Tom. I’m a vegetarian as i cannot digest meat. I’m always looking for main dish meals wherein I can divide them and add a protein for me and meat for Tom. I remember you saying you were a diabetic and I know you cook, so thought I’d throw the recipe idea out to you. Have a great day, my friend.

  39. cindy knoke says:

    So sorry you went to hell to get here. Bottom line American Health care system is far from the best in the world. Ditto Mental Health.

    • Hi Cindy – You are so right about American Health Care falling through the cracks of what we consider important in our country. The coming election isn’t going to change anything, in my opinion, and we’ll be stuck with what we already have. From what I see on a daily basis, the Mental Health crisis has become more and more out-of-control. Thanks so much for stopping by. Sheri

  40. cindy knoke says:

    Message won’t stick. Gonna do segments. So happy Tom is doing so much better.

    • Thank you. We seem to cross a hurdle and then something else seems to cut us off at the knees. Once again, Tom’s psychiatrist has come to the front to battle for medical care for Tom. What does it say about health care when it’s the psychiatrist who has to order blood work and then relay the information to the internist the outcome when it should have been the internist all along that ordered the blood work. I went through this exercise this past week and it will continue into the coming week. Thank you so much for being you. Sheri

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