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Nurse CC - Show Notes
Childhood spinal infection
NB - some of these show notes are based on CC's preparatory notes. Those portions are CC's voice and are italicized.
0:05:00
Born in 1957 just north of Philadelphia to a white, middle class family. Grew up suburban, one of 4 children with a very tough childhood due to family dysfunction. I was extremely ill at age 6 with a spinal infection that resulted in extended hospitalization, inability to attend first grade for 1/2 the school year and confinement in a body cast and body brace for years. Despite many obstacles I was smart, had tenacity and fight that would both make me the awesome person I am today despite much suffering and societal disapproval.
0:06:05
Fought my way to be the first on either side of my family to put myself through college. I entered a collegiate nursing program in a religious institution where I hardly fit in but I had the ability, even by that point, to become a chameleon instinctually knowing how to acclimate to any environment I found myself in throughout my life. Once there, a new world opened up to me and I was on fire.
0:07:00
Began working in a hospital technical job in high school paying well and allowing me to support myself and finance my tuition, books, transportation with a small student loan. Became a RN in 1979. It was hell but I had only known hell all my life so I loved it. It felt normal. Drama, life and death, front seat row to people’s most intimate moments. However, I had empathy even at that point for any human’s suffering and this became more and more of a curse as I aged.
0:08:00
Of course I married, I was pretty, had a supervisory role within 18 months of graduation and by society’s yardstick I was doing quite well. Eventually I reluctantly had children which was interesting because I didn’t ever like children but succumbed to my husband’s wishes and that in and of itself is a miracle that I could only attribute to God. Once my first baby was born, I truly knew love for the first time in life. I wanted to be a full time Mom but this was not even a remote possibility.
0:09:30
CC chose to become a school nurse to be closer to her kids, but away from the life and death drama of ICU - CC had a 2nd child with many birth defects and she had to advocate for him - he'd be dead if she wasn't a good advocate.
Flouroquinolones
0:11:30
When CC worked in ICU, flouroquinolones were not in common use - I have extremely hard scientific evidence that I was given Levaquin in 2002 during a surgery but that memory would never occur to me till my records had been destroyed due to laws allowing health care providers to destroy after 7 years.
0:12:30
CC was an emotional wreck after that surgery, crying all the time - when she returned to work she had a mean streak - she asked her surgeon friend for an antidepressant prescription, and that helped control her behavior.
0:13:30
In 2011, CC had bronchitis so just went to an urgent care clinic and was given Ciprofloxacin.
0:14:30
Prior to Cipro, I had been superwoman. I worked at times 3 jobs, obtained a Master’s degree and even a real estate license. So, because I was a school nurse and could be off for the summer which I never did, I remained in bed all summer. As September approached I called my internist to report this resulting in a few blood tests and being told I was just getting older. I had never been this age so I accepted this was normal.
0:16:00
CC's symptoms were extreme tiredness and weakness: she couldn't get out of bed - I drug myself to work, had been on an AD (antidepressants) since the surgery in 2002 which I knew when going back for my first post op visit I told my surgeon colleague, I’m mean. I need a SSRI, which sent me to a psychiatrist since that time. Of course all was attributed to my journey in life of mammoth stress and I happily took this which did allow me to continue at superwoman warp speed but in retrospect I had agitation and anxiety apparent but did not interfere with my ability to function.
0:18:00
CC says people in her situation are doubly traumatized when they realize they've been brain washed by the health care system she worked in - so they carry a lot of guilt as a health care worker.
0:20:00
By early 2012 I told my psychiatrist that I could barely get out of bed and he gave me a type of stimulant, not an amphetamine, called Provigil used for sleep apnea and MS (multiple sclerosis) fatigue. This allowed me to get through the work day, going to bed for a few hours at a time but I was able to earn money.
0:21:15
But I became pathetically agitated and no longer could physically be Mother Theresa as everyone knew me to be. I had anxiety to such a degree that if things were going poorly at work, I’d pick up the phone, say I was sick and had to flee on a few occasions. I knew something was wrong but I never associated the word anxiety, panic attacks to my situation. I was confused because I was being abused in the educational system but just performed at superhuman levels and now was saying no. They didn’t like that and labeled me a troublemaker and suspected of having mental health problems.
"Lamb being led to slaughter."
0:23:30
I can trace back to late 2012 seeing a foot doc because my feet hurt but was told this was a bony deformity. I attributed it to being on my feet so much as a nurse. I never put together this was progressing small fiber neuropathy and docs certainly would never have a clue till they totally disabled me.
0:25:00
In the spring of 2013, my left foot swelled and was painful. I had done nothing. I could never be athletic because of my childhood disease but did the treadmill daily prior for decades. I saw another foot doc, told him just what I’m telling you and he ordered an MRI. He told me the MRI showed I bruised myself so I had injured myself. I adamantly said I did not, he became angry, threw the report at me to inform me I was wrong. Well I now know they are all Incompetent. So it was June 2013 and I spent that summer in bed and the swelling subsided.
0:26:15
Fall of 2013 I returned to work and immediately my right foot swelled and became painful. I no longer could rest and figured the other got better, I would muddle through. So In October, as I walked down the hallway, I felt a snap and thought this might be a breakthrough but quickly realized things got worse. I didn’t know what to do but happened to run into an orthopeadic doc from my days in the hospital, showed him my foot and said I don’t even know what specialist I should see because I’ve seen them all. He recommended his associate, a foot and ankle surgeon. I made an appointment not knowing I was a lamb being led to slaughter.
0:29:00
November 2014, I was seen and work up done by his fellow who is already a podiatrist, now doing a fellowship in foot and ankle surgery. By now the pain In my feet was unmistakably burning of my soles. I told him everything but had no clue my demise started with Cipro, but even If I had, it would never had been recognized. He did say that my symptoms sounded like neuropathy and asked If I was diabetic which I was not. Subject dropped, never recorded on my medical records I recently discovered. Follow up MRI showed severely ruptured peroneal tendon and things were too bad for rehab. Surgery was my only option. I needed a fix. I had to work so I signed for surgery December 20, 2013 so I could finish my obligations before Christmas break to minimize my sick time. Mind you I could barely walk but I was always Superwoman and this was just how I functioned even as sick as I was.
0:31:00
I had been recruited to accompany the high school choir as a pianist because of political downsizing and building politics leaving the High School Music teacher without other options. He was the president of our union and powerful. But he paid a price just like me In his lifetime. I didn’t know him well and was actually afraid of him but he was desperate, he heard I was quite the pianist , listened to me play, and said “yep, you're good enough”. Now his standards of good enough, I found out as a did this for several years, was pretty high. He was one of the most talented musicians that I’ve ever been privileged to work with. I was again on fire as I worked with him and his Choir.
Nerve block
0:34:00
He protected me when people in management were abusing me and forcing me to go against my nursing license and this was a gift. On December 20, 2013, I went into surgery not knowing the life ending decision that I was embarking on. I was given a Popliteal Nerve Block for pain control post op and receiving general anesthesia. I left, felling no pain, got my narcotics and went home very ok.
0:36:10
The following day the nerve block wore off and I began screaming at the top of my lungs. Nurses in pain, like anyone, do not think rationally, because in retrospect, I had been nursing for 20 years in a hospital and the only patients I’ve ever heard scream like that were in a burn unit in the 80’s when pain control was barbaric. I’ve also endured a natural birth of a 10.5 pound baby and I didn’t scream like that. By evening, I broke down and called the surgeon who assured me I was almost over the hump. Ha.
0:38:25
My best friend and husband stood there paralyzed in fear as I demanded the bottle of narcotics fearing I would take them all. I screamed give me 3 fucking Vicodin. I knew that wouldn’t kill me but even in those days you knew that prescription was not going to last. I also screamed that my husband had to remove the bandages because they were giving more pain. He faints at the sight of blood but I was a crazy woman.
0:39:15
Finally, the surgeon after insisting I might have a blood clot first and I said absolutely not. There’s no redness swelling, tenderness. Then he said have you ever had back problems. I say no then remembering I pulled my back out the previous June but it healed. So he orders an MRI of my Lumbar spine. The MRI is done and my back is a mess Im told (every part of my spine is gone and so Is my jaw).
0:40:30
Flouroquinolone destroys every part of the body on a cellular level - CC has degeneration of her spine - she endures 3 epidurals in an effort to determine the source of the pain
0:43:30
CC under goes 3 epidural invasive, harmful, toxic spinal injections - she has been out of work for months and in tremendous pain - epidural is a steroid that is injected into the spine to decrease swelling, but if you read the data, it does not work, it is a bogus money making procedure - the doctor tells CC her only-from-the-knee-down pain is from her back, her sciatica nerve
0:45:00
CC then undergoes a very painful procedure - the doctor realizes CC has bad neuropathy, and tarsal tunnel syndrome - he tells her to see a neurologist, but CC has to find one - Feb 2014 CC sees a neurologist
0:46:30
Just prior to the MRI date, I am In agony and my husband has no tolerance for my pain thinking I’m a whiner. I drive myself to an ER at 4:30 in the morning in desperation. I tell them my story, which I recently read their documentation and all I can say Is; are they on drugs, does anyone even listen to the patient anymore, total incompetence. I think they’ll do the MRI sooner and I can get answers. Wrong. Narcotics (Tramadol-now classified by DEA (Drug Enforcement Agency) as a controlled substance Class 4 opiate and Valium-a muscle relaxant). Prior it was considered a safe opiate.
Misdiagnosis
0:47:45
CC saw the neurologist: That man I’m sure is on drugs even though I knew I was. He kept leaving the exam room, I’d have to go out and find him, he does no neurological exam and states I need to see a neurosurgeon. 0:49:00
CC says hospitals cover up medical errors causing harm and death - CC tells about a nurse serial killer who was caught and put in jail - some nurses knew this was happening - The Good Nurse by Charles Graeber is a book about it - a nurse went to the DA (District Attorney) and they exhumed a body, but the hospital didn't tell the examiner what drug to look for based on meds being diverted in the hospital
0:51:10
The pathologist tested 100 drugs, but not the one the whistleblower nurse had reported - and the serial killer nurse went on - worked at 9 institutions - they think he probably killed 300 to 400 people
0:52:00
CC is not glad she is alive, she wished the drug had of killed her - but she loves her kids and is plugging along - I See the neurosurgeon who emphatically shows me the MRI pointing out there in NO compression on those nerves. That pain Is not coming from your spine. I get a second opinion somewhere else and he says the same. He says you have to see a neurologist and I said I did, he sent me to you. He sets up an appointment the following day in that office.
0:53:15
Unfortunately I saw a nurse practitioner but it really wouldn’t have mattered. I ask her sobbing do you think I have MS. She so compassionately comes over and holds my hand and emphatically states there is no way you have MS. Wrong. Nurses are taught never to do such a thing but she felt so confident In her skills that she violated a sacred nursing ethic. But I feel relieved as I sat in the waiting room surrounded by patients horrendously deformed by neurodegenerative diseases. She put me on Gabapentin and orders another EMG of my arms , follow up in three months with a bonafide neurologist.
0:55:30
I return to my surgeon, he sees the horrendous EMG which although abnormal, unfactual and just documentation to support another surgery which was unneeded. I’ve now been out of work for over 3 months, in desperation. He sees the EMG report says I have Tarsal Tunnel Syndrome and offers to operate on that and maybe later do the other foot. I need to work, I think this might be the answer so I agree. I’m so stupid. Desperate people do desperate things.
0:57:00
I refuse the popliteal block because my gut tells me that this is not good. I come through that surgery and while convalescing decide I’ve got to see that neurologist before July. I see him in April. He’s not only incompetent, he’s a liar I now know. He raises his eyebrows that I had the TTS and says I do not recommend the other foot. I told him what the surgeon said and he just doesn’t comment. Conspiracy of Silence.
"I ask him what he found and he refuses to tell me."
0:59:00
He orders the vitamin levels I demanded reluctantly even though this Is research based. He says he wants to repeat the EMG on my legs. I tell him I have the appt for the arms June He says good do arms and legs. Wrong.
1:00:00
I show up at the hospital June 5th for the EMG with his partner. He looks at the order and starts ranting that he’s not going to do 4 limbs in one day and he’s got a splitting headache and has had a horrendous day. I offer to reschedule and he rants No. I now have been scouring the internet trying to find help because I’m even weaker. He then begins a two hour session of electrical shocks as he mutters only to himself as my friend holds my hand trying to help me through the pain. But, I finally hear him say ok, this is starting to make sense. I know he found something. When we are done I ask him what he found and he refuses to tell me. I beg him to see me because he’s the only Board Certified Neuromuscular Neurologist in the area. He says no.
1:01:30
I furiously start calling for the results. The neurologist doesn’t call me back. Finally I call and tell the nurse he better call me because if Im dying, I need to know to make arrangements. Takes days to even connect but I have now discovered there are Peripheral Neuropathy Centers of Excellence and the closest is several states away. I get an appt in less than 2 weeks. The local 2nd neurologist finally calls me back and tells me the EMG didn’t show much in those exact words. I say I’m so weak I can barely get out of bed and he offers me physical therapy. I refuse and politely tell him that I need answers so I’m leaving the state. He becomes angry putting up barriers to getting my records which ultimately I don’t need. Good people don’t care what others wrote. But because I’m a nurse, and know the ropes, I do obtain the EMG report which report which is 8 pages long single spaced starting with the statement this is a highly abnormal and complex EMG. Idiocy. Lies.
1:04:45
I go to the out of state famous guy and to my unknown luck, I show up on a day Obama was In town- I’m the only one there. All the extensive testing is done that day only needing a specialized MRI machine that is not available most places . Skin punch biopsy, 17 tubes of blood, 4 limb EMG done In less than 30 minutes. No begging for any test and more I would never have known. But he does say, because he was the first person that actually listened to me, find out the precise location on your body where they injected you for that block.
1:06:00
Two weeks after seeing the famous neurologist I return for the results but now I’m one of the herd of patients there. He tells me you have small fiber neuropathy probably from Cipro since that’s when it started but of course was placed on other neurotoxic drugs as every body organ began to disintegrate. I also have B6 toxicity which is neurotoxic (seen by the local neurologist several months earlier but never told). He goes on to explain that I had very sick nerves that could not sustain the further injury of a neurotoxic nerve block and they should have never given that to you. He adds and if you think I’m going to court for you I’m not. He states there Is nothing he can do for me. I sob and ask how I will support myself and his response was I could go on disability. He tells me he’s busy and no longer has time for me. I plead that I’m so weak I can barely get out of bed and he scolds me saying you’re not that weak. He ushers me out hysterical.
Another misdiagnosis
1:07:30
I return home. Still feeling like I’m dying and I really wish I had. On Saturday night, I’m desperate to see anyone who will help me. My long term internist had left the practice before the tendon rupture but I work with her husband. I email him and beg for his wife to call me and she does. I ask her the name of her Internist as I’ve seen multiple ones with no help and she tells me.
1:08:30
I see that internist shortly and am too weak to even sit upright to speak. She, upon entering, demands I sit up to speak. I cry and tell her I’m too weak. She does listen o my story and has a fuller history to more accurately understand. After my story her response is let’s do a brain MRI because they’ve MRId everything but that. I get that done and she calls me the next night telling me it looks like I have MS. I need to see that kind of Neurologist. I tell her I will not see anyone local. She sets me up with the nearest big city prestigious university head of MS.
1:10:00
That guy was not only Incompetent, he abuses human beings. He demands further invasive testing which was done there and my civil rights were violated and I was treated like an animal. 2 weeks later he tells me there is no doubt I have MS and wants me on toxic drugs immediately. I’m scared but too abused to accept this so I travel 9 hours to a nationally renowned hospital, lying in the back seat of our compact car writhing in pain. He does listen to my story. His verdict is that’s a weird story, but I have seen weird stories. But, I would not take those meds, continue to monitor your brain MRIs and if you get more damage, then take them. Good enough for me.
1:11:45
I have to return to the first MS guy and he’s angry but does not refuse to continue seeing me which many do. I have a few years of monitoring with no further damage revealed but cannot take his verbal abuse. I tell him how he’s hurting people with the things he says, he’s outraged, tries to pawn it off on me and I stand my ground and say I had someone beside me who heard everything you said. I point out the repeated things he said to me, he starts to grovel and says he never intended to hurt me. I respond, I know you didn’t so that’s the point of this conversation. You're clueless about your verbal abuse. I never go back because of that and other things.
1:13:00
In 2016 I read a medical journal article that is titled 40 red flags this is not MS. The first red flag is small fibre neuropathy. I email the lead author from a Colorado. He emails me back within 5 minutes. I tell him why I think I’ve been misdiagnosed. He says go see his coauthor whose closer. I do. The verdict there was I do not meet the complex criteria that Is universally accepted to diagnose MS. The McDonald Criteria. But I should be monitored. A recent medical publication cites 1:5 are misdiagnosed as MS some being on toxic drugs for decades. There is no real test for MS. So why didn’t the head of MS at a city prestigious university not understand the McDonald criteria? Because his big ego and status made he think he knew best. Scary.
Black Box Warnings
1:14:00
CC says recent research shows 1 in 5 MS patients have been misdiagnosed, and they may have been on toxic medication for decades
1:16:00
Black Box warnings on medication come from reports of harm from patients, it is not doctors submitting reports of adverse reactions - there is 1 doctor who is an adverse drug reaction researcher and he is a good man - he is the reason many of the Black Box warnings are at the FDA - CC contacted him and told about her symptoms
1:17:30
Small Fibre Neuropathy (SFN) - basically damage to the nerve - there is also Large Fibre Neuropathy, diabetics get - in MS patients, they experience neuropathy because the damage in their brain manifests the pain, not the peripheral nerve
1:18:45
The pain after her surgery was so bad CC would not have survived without an opioid - she had been prescribed Tramadol, but it was not labeled as an opioid, but it is an opioid and more dangerous than others
1:20:00
1.5 years later I’m (was) still on Tramadol for self preservation and having been told by a Johns Hopkins peripheral nerve neurosurgeon that after 9 months that nerve was not going to heal. My only options were meds or a spinal stimulator implantation. Now I’m near total psychosis. I’m obsessed with death In that I cant stop reading about It. I get pleasure from this. I sob 24/7. I can’t leave the house because I’m a public spectacle. I never ever took more than was directed. One day I take it, start to sob more and realize this poison is making me worse. I abruptly stop them. I go into withdrawal and writhe in pain everywhere for weeks. But when it’s over, my horrendous anesthetic nerve injury pain is gone. My brain was recreating the pain to get the Opioids. Tramadol was labeled in August 2014 by the DEA a a controlled substance, so providers didn’t think it was addicting even though it was an Opioid. Now we know about the corruption between the FDA and Big Pharma and the Opioid Crisis is the tip of the iceberg. My psyche Improved but I will never be normal.
1:22:30
The last years have been spent looking for The Holy Grail, trying alternative medicine and therapies but I now know my life is over. I will never work again, my personality is different as is my perception of people. One by one you r abandoned by friends, coworkers, family, religious entities and finally God. I live in unbelievable pain 24/7 that cannot be relieved unless I risk further brain injury. I’m too weak to leave the house and spend much time in bed. Very little left. I see that my situation Is the result of global profit driven societies from the rich down to the poor.
1:23:30
CC goes for stem cell therapy in Mexico as did others poisoned by flouroquinolones - and CC did respond well, but every body else got worse - CC's quality of life improved enough she could connect with others globally for mutual support - they all have multi system damage - CC was treated better by Mexican health care workers than any American.
Adverse drug reaction reporting
1:26:00
CC supports the Open Medicine Foundation, it is private, global and founded by a scientist trying to help his son - CC shares her story as a warning to others
1:28:00
First, we are the cash cows that keep money flowing to the FDA, Pharmaceutical industry, healthcare, lawyers and Social Security etc.
I have spent my whole in the healthcare Industry. I understand things more clearly than most. This is a very clever system to keep the money flowing. The pharmaceutical companies are only required to test new drugs on a small group of people to get their drugs approved. Once approved the adverse reactions that occur are numbers extrapolated from the small group. Why anyone would volunteer for such a dangerous thing I can only surmise is money or desperation. Those numbers are recorded as percentages become part of the FDA drug data system that records and disseminates the data to health care providers and these risks look small and many times are not captured. The drug is marketed to masses of unsuspecting populations. So then there Is the breakdown biggest of all.
1:29:00
What CC uncovered, start with doctors - they use the Physicians Desk Reference (PDR) - that info comes when a pharmaceutical company gets a drug approved based on a limited number of people in their study - and this makes the risk look small
1:31:00
The USA has a voluntary adverse drug reporting system. People are on so many meds, who even knows what might have caused what. Even If the dots are apparent, physicians are so burnt out by their system failures, they don’t have time to report such reactions. Due to these breakdowns, when we do go to the doctor, they believe the reported data from the FDA. The doctor gaslights the patient If they protest too much. Patients get labels of false diagnosis, most often psychiatric in nature. More harmful drugs and procedures follow and patients are further harmed. The patient is left hopeless and abandoned and worse, feels shame.
Additionally, adverse drug researchers have been surveyed recently and unanimously stated they were repeatedly denied publication In peer reviewed journals, bullied, threatened and feared for the safety of not only themselves but their families. They are essentially stonewalled into silence.
1:32:30
CC says that we see with the opioid epidemic, the FDA is in bed with Big Pharma - the only reason this was uncovered was because of a whistleblower - the public thinks that it is the only epidemic the FDA and Big Pharma have caused, but its the tip of the iceberg
1:34:30
Adverse drug researchers have been surveyed recently and unanimously stated they were repeatedly denied publication In peer reviewed journals, bullied, threatened and feared for the safety of not only themselves but their families. They are essentially stonewalled into silence.
So who does the majority of such adverse reports come from? Us! Those few reports come from the brightest, most observant damaged people there are. They are the only ones reporting such devastation In dire circumstances. Re Fluoroquinolones in my experience , they are policemen, hairdressers, truck drivers but rarely healthcare professionals like me. They are the real heroes.
1:35:00
But, back to why I think we are all part of this downward spiral. We are too busy, gullible and brainwashed to even know in general. We are all on our hamster wheel of education, jobs, marriage parenting that our only goal Is to survive and preserve whatever we value. We don’t see the decay everywhere. Instead we chose to point fingers at groups or people because that Idea preserves our paradigm of thought. Politicians and people are worried about anything but the real priority which I know to b Autism. If they do not address this tragedy properly with 1:48 children Autistic, that alone will be the collapse of society because there will not be enough healthy people to support the disabled. Wake up.
This is man made toxins everywhere from food, air, water, soil, medication, vaccines, any man made products, now passed down Intergenerationally by DNA damaged people. This is cumulative damage. We have done a fine job and it may all now be too late. Man made lust for comfort has evolved slowly over years. We love our cars, houses, beds, vacations etc. We are all responsible for this messy world and I have no hope. I don’t like knowing what I know. I’m left hopeless.
1:38:00
CC has always been a realist - she hopes she is wrong but all the man made products are full of toxins - but we're not going to give up our cars and planes, we love our comfort - CC's life is hard, and the only thing that makes her feel better is sharing her story.