my doctor shared with me the threats thrust upon him by those who oversee his practice as part of a hospital corporation to cut my meds

This is exactly what I have posted about OVER AND OVER… this is a clear example of a discrimination of pts because of their valid health issues and the valid need for one or more controlled substances to help the pt to properly manage the consequences of their disease issues.  As I read this, this is a CORPORATE DECISION and if they are going after “many of her meds” … it could have something to do about the overall cost of treating this pt.  Could this be a textbook example of a disabled person being discriminated against by a healthcare corporation because of the pt’s medication needs and be a civil rights violation, along with pt abuse, denial of care and pt/senior abuse — for starters…

This pt needs to reach out to a civil rights law firm and she is probably not the only pt that is being discriminated against… how many hundreds or thousands of pts of Community Health Network  are being mis-treated in a similar fashion.

My Doctor May Fire and Blacklist Me

Thursday, February 6th may become one of the most profound days in my life. This could destroy me, send me into a dark place from which I will never be able to escape. And it may just kill me.

Thursday was a day I knew could come. After all, it has happened to millions of people, just like me, all across the country. And this is the second time my doctor shared with me the threats thrust upon him by those who oversee his practice as part of a hospital corporation.

I am a black mark on society. I am a doctor’s worst nightmare. I am one of the patients doctors toss aside like garbage and whom they fear.

I am a chronic pain patient. And Thursday, my doctor told me he would have to forcibly taper me from a life-saving drug.

It’s bad enough that the over-blown, opioid “crisis” has forced my doctor’s hand, resulting in tapering of my pain medication. But now, they are going after more of my medication.

I lost it in the doctor’s office. My stomach dropped to my feet when he told me my medication had to be tapered down. I cried. I could see in his eyes, the pain, the frustration. I left the office angry and tired of the 6 years of the systematic destruction of my health and quality of life.

So I sat down and I crafted this letter…. Then I emailed it to every single board member and higher-up in the hospital corporation that oversees my doctor. It needed to be said. However, now, it’s very likely I won’t have a doctor and I will be blacklisted from every physician in my area and beyond.

I am hoping that in sharing this letter, far and wide, I will be able to defend myself and obtain some protection against what may come.

Here it is (and please feel free to share…. actually, my health and life may depend on it.)

“Good afternoon,
Today, I saw my doctor. And today, I am ready to contact every media outlet and investigative reporter I can find, as someone in the higher levels of management IS TRYING TO KILL ME.

I have been a patient of the Community Health Network since 2013 and have had related services through Community Health several years prior to that. I have been deemed medically fragile by the state of Indiana and suffer from several illness and medical problems.

And I am a LOWLY HIP Plan Plus member via Indiana Medicaid.

I have Fibromyalgia, small fiber neuropathy, peripheral neuropathy, irritable bowel syndrome, paroxysmal atrial tachycardia, premature atrial contractions, anxiety (free-floating and IBS related), severe hand eczema, osteopenia, pelvic organ prolapse and Ehler-Danlos Syndrome type H.

My illnesses are extremely painful and I do everything I can to work with my healthcare provider to achieve some sort of quality of life. I exercise, eat well, drink water, use Epsom soaks and muscle rubs and use a heating pad.

Since 2007, I have been tried on several SSRIs and other anti-depressants as well as anticonvulsants, Lyrica, Neurotin, Gabapetin, steroids, NSAIDs, Beta-blockers, Calcium Channel Blockers each and every one of those drugs had a horrific affect on me. I was either curled in the fetal position, crying and contemplating the best way to commit suicide or I was so strung out, I couldn’t eat, drink or sleep. I paced. I lost 20 pounds in a week.

Dr. SXXXX, my Community heart doctor told me, “You are that rare 1% of people who cannot tolerate many drugs.” He finally got my heart stabilized on Verapamil. But it didn’t help my other problems.

My former physician (Dr, DXXXX DXXXXX through Johnson County Hospital) was able to stabilize my health between 2007 and 2009. He placed me on Hydrocodone 10 mgs X 6 hours as needed. I usually got by on 10 mgs per day but only occasionally would take a second dose.

Additionally, he pulled me off the SSRI and placed me on 1 mg Lorazepam 4 times a day. My health stabilized. I gained weight back, I began sleeping, eating and living again.

I lost my doctor due to having to switch to Medicaid in 2012. I found my Community doctor in early 2013. And all was well until the “opioid crisis” took hold of Indiana and the Emergency Prescribing Law took effect; and in December 2013, my physician, following Community rules, began force tapering me.

I went from 10 mgs Hydrocodone every 6 hours as needed to 7.5 mgs 2x a day and 59 doses per month. Since then, I have been tapered to 5mgs am and 7.5 mgs pm. My pain is not managed; however, I have never expected my pain to go away. Lowering pain is all I expect.

My quality of life, since Indiana implemented one of the strongest opioid prescribing laws in the country, has changed dramatically. My quality of life has plummeted and my conditions have worsened. I understand why my doctor prescribes the way he does….he is FORCED to follow guidelines set forth by the hospital corporation. He wants to treat me, but cannot as someone else is treating me.

Someone on a board within Community is treating me. Though they have never met me, never examined me, likely never read through all of my medical records, they are dictating my treatment.

And today, word came down from higher ups that I am to be forced tapered from my anxiety medication. The one medication that keeps me from passing out, vomiting and defecating on myself due to severe irritable bowel syndrome and the one medication that keeps me from panicking so badly in the grocery store that I have to be escorted out by paramedics. Yes, my teeny-tiny 0.5 mgs 3 times a day, that I sometimes only take twice on a good day.

While I understand that since the “opioid crisis” (which I use quotations as we no longer have a PRESCRIPTION opioid problem but an illicit opioid problem) everyone is HYPER AWARE that benzodiazepines and opioids CAN be a deadly combination. And this has been the same danger since 2007 when I began this life-saving regimen.

However, I too, am hyper-aware of the potential of problems with respiratory depression and I am careful with my medications. I always have been. Additionally, there has been nothing in my health record to indicate that I am at risk for addiction, have shown an abhorrent behaviors, have never misused my medications, have never diverted, sold, given-away or been anything but DILIGENT with my medications, how they are stored and how they are used.

Yet someone feels the need to tell my doctor how to treat me. Someone who has never examined me and likely someone who doesn’t even have a medical degree.

While I understand that you want your hospital corporation to look good and be pillars of society that are doing things to help the opioid crisis, however, you are harming patients. Yes, the hospital that claims patient care is important and our treatment is your top priority….yes, I have read pages and pages on how you want to give patients the best care.

But is it top quality, compassionate care to force taper a STABLE patient from the very medications that are keeping them functioning? According to the CDC’s latest reports on the opioid crisis, it is NOT and it is a danger as well as a detriment to the patient.

My medical file and that of thousands of patients are different. As we are all humans that have conditions that vary. Therefore, our treatments will vary. Some need high doses of pain meds, while some are fine on low doses. Every individual patient is unique and different. You claim patient focused medicine that is catered to that individual yet you force across-the-board rules and guidelines.

I am just a number now….a pariah on society, a potential liability and a number that may make you look bad. I am being treated as if I am a junkie and someone incapable of knowing the risk of the medications that I take. And as with all medications there are risks.

If my medications are forcibly tapered, my health will decline further. I will give up my pain medications to keep my anxiety medication. Which will force me into unimaginable pain. I will spend the rest of my days curled into the fetal position, praying for death to come. The pain I feel from these diseases is unimaginable to ALL OF YOU as you have never lived a day in my body.

But Community Hospital will look good because that will be one more number in the “off those demonized medications” list. And that’s all that counts, right? Not my comfort, not my quality of life, not compassionate care, not my individualized care, but your numbers.

But this does make me question….is it about numbers, statistics and looking good or are there, as in many cases involving medicine, kick-backs? Rewards for good numbers? Or are you preparing to introduce patients like me to the next greatest treatment in pain: Naxolone and Suboxone as has other medical facilities are across the country? Addiction medication for pain control. What a novel and profitable idea.

I am angry and upset right now. And I am sitting here pondering what my life will look like in mere months and contemplating if I should wait until I am curled into the fetal position, unable to move before I pray or plan for death.
So, I am reaching out. I am telling everyone how it is. And I am PRAYING one of you will answer me, SEE ME and see that I am sick, I am unique and I deserve the care that keeps me stable and improves my quality of life DESPITE your shiny numbers and how good you look to others.

Look at my chart, examine me, see the hell I have been through, the medicines shoved down my throat causing me to nearly die and the relief I finally found. Talk to me. See I am an individual and not a statistic and THEN decide if taking away my medications is the RIGHT thing and patient focused, individualized, compassionate care.

I will wait for a response, though it’s likely I won’t get one. But I want you all to know that every person in this state and in this country needs to see what’s going on in the lives of patients just like myself. We are mere numbers to you and whether we lose our lives or take our lives, you don’t care.

Thank you for hearing me out. I beg of you to look at your policies and allow physicians to single out cases like mine that don’t fit into that tidy little mold you’ve created for patients. Allow them to choose their patient’s treatments on a case by case basis. And stop threatening good doctors who are TERRIFIED to treat their patients as they see fit. It’s wrong.

Edwina L Caito”

As of today, Sunday, February 9th, I have gotten only 1 response and that was from the hospital patient complaint office; the people who are paid to coddle patients, tell them they will look into it, then quietly sweep the complaint under the rug.

To be honest, I don’t expect to hear from anyone at all. That is, until my next doctor’s appointment will likely be cancelled.

20 Responses

  1. I also want to state that I think this is becoming socialism medicine. I just saw another article if you remember how Alabama will not allow abortions, now they want men to be ‘fixed’ after 3rd child and or when they turn 50, it is your body it should be your choice, government should leave us to our own decision making and stay the heck out of it!

  2. Well said and written so good. I wish I could have wrote something this good, Can I copy some of this to send to my previous care as I plan to write them too! I also want to write to CDC and DEA and make my voice heard as well as on behalf of all of us.

  3. This has been happening for 7 years no lawyers will help you know that.

    • I understand that 100%. No attorney will ever help us. But I do have an investigative reporter that is a dear friend that wants to help. Crossing my fingers!

  4. Pain can t be that bad on only 4 Norco a day that’s nothing? Especially now w the way the drug makers changed them to no longer control any pain.

  5. I am almost in tears after listening to your story. I, and so many others are experiencing this genocide and i feel pain for all of us. I’ve done all I feel I can do and I’m tired, really, just ready to lie down and die. I don’t see help coming, perhaps the forces will not arrive in time, but please know, I hear you, I understand you, and I bless you, I am you.

    • Thank you. I wrote this not only for me but for you too. Hang in there and know there are people out here still fighting for us.

  6. The Gov took advantage of the flood of fentanyl and its attending ‘street’ overdoses to do a tobacco-like money grab, while preventing pain patients from dying of overdoses (we weren’t) and placating all of the mothers who’s children died of illicit using of one kind or another (they were)…
    SO? Gov got the money, overdoses are going up and pain patients and their Doctors are going DOWN.

  7. I’m so sorry Edwina! I suffer many of the same diagnoses and this has become a very cruel existence! I applaud your bravery, thank you for sharing your words and send out my prayers on your behalf as well as all those suffering. We all need to be heard! God bless.

    • Thank you! It was time to try and take one for the team! Don’t know where this will land me and to be honest, I’m terrified. I will keep everyone updated on my Medium page. Xoxoxo

  8. I see you. I HEAR YOU . I UNDERSTAND YOU. The same thing is happening to me. It’s wrong. It’s not fair. I wish to God I could offer you words of encouragement. But alas, I cannot. God be with you during this torturous time. I’m praying and thinking about you. I beg God to give you peace and comfort, freedom from pain. My heart breaks for you, for me, for us all. Please know YOU ARE NOT ALONE. I AM HERE 24/7. PLEASE VENT. PLEASE FEEL BETTER AND PAIN FREE. GOD bless you. Keep shàring. May God have mercy. All y

  9. I hope you keep speaking up for yourself until they are forced to hear you! Please don’t give up. My prayers are going up for you. I know what it’s like, I have Ehlers Danlos as well, and it never plays alone. Ehlers Danlos causes so many other problems in the body it’s not even funny. It seems not many physicians truly understand our condition. Keep spreading awareness. Good luck and God bless.

  10. You’ve expressed exactly how illegal corporate dictating to prescribers has one continues to harm an ignore critical patient care. OPIATES needed by those suffering are being purposely denied proper patient care. This is definitely wrong and a civil rights VIOLATION. IGNORANCE and greedy CORPORATE CONTROL of human health issues. Legal representation for millions is desperately needed. NOW..

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