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.)
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.