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I’m Erika and opiates will kill me

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My name is Erika Zorn

I am 33 years old, and this is my story....And what ultimately has become a legal battle for OUR civil rights and my right to live.

I was born with primary medical conditions of systemic lupus erythematosus (SLE) and fibromyalgia. I was diagnosed with SLE just 11 years ago at the age of 22, and fibromyalgia approximately 2 years ago. SLE is a lifelong condition, which I have suffered from, unknowingly, since birth. Although continuously tested, my results never came up positive and my disease (SLE) went undiagnosed, causing irreparable damage for 22 years.



A healthy body will create antibodies to fight disease and infection. SLE, an autoimmune disease, however, creates antibodies that attack the patient’s own tissue and organs. As I went undiagnosed for 22 years, the SLE destroyed or damaged extensive internal tissue and multiple organs. SLE causes chronic and severe pain. Many patients with autoimmune diseases who suffer from chronic pain typically will also develop fibromyalgia, as I have. When the body is in pain it will send signals to the brain, which reads the signals and sends back a neurological response identifying the source of the pain. With fibromyalgia, the brain is no longer capable of correctly reading, or reacting to, the signals and, in return, return signals that greatly exaggerate the sense of pain, causing undue suffering. Fibromyalgia, being a condition of the nervous system, is resistant to most medication. Only prescribed opiates have been effective to lessen the pain. However, continuous and long-term use has proven to cause liver failure (mine is currently 3x it's normal size) and serious damage to other organs. As a result of SLE, I suffer from “secondary” medical conditions; lupus nephritis (chronic kidney disease), proteinuria syndrome, IBS, gastroparesis, a condition that affects stomach muscles, preventing the stomach from emptying properly/timely, adversely affecting digestion; hypothyroidism; sjogren’s syndrome (chronic dry eye, nose, mouth, tissue and skin); scleroderma (hardening of tissue and skin); Raynaud’s disease (cold and discolored extremities and numbness); rheumatoid arthritis; osteoporosis (kidneys help absorb calcium and vitamin D) - as mine were being destroyed by the SLE over 22 years they cannot properly absorb those vitamins. Often to treat lupus, patients are prescribed steroids -long-term use is widely known to cause bone deterioration. I now have the bone density of a 90 year old female, brittle bones that are easily breakable; neurocardiogenic syncopy; (over-reactive disorder of the heart and blood pressure which causes rapid heart rate and blood pressure drop coupled with loss of consciousness), intercystial cystitis, which is chronic inflammation of the bladder that causes pain and incontinence (due to which I have my 2nd interstim, a bladder pace maker inserted during a painful surgical procedure), vulvadynia (chronic vaginal pain), and early onset of menopause. Additionally, over the years, as a result of my medical complications I have developed depression and severe anxiety.



SURGERIES: I was diagnosed with SLE in my first year of law school, when I moved to New York City. As a former straight A honors student, athlete, working three jobs simultaneously, I was determined not to let my newly discovered illnesses prevent me from pursuing my career dreams. During this period, I spent much of my time in the hospital, sick and unable to attend classes. While working in close coordination with the dean of academic affairs (whose sister also suffers from SLE) I found her to be compassionate towards my health related limitations, my frequent absences related thereto hospitalizations, doctor appointments, surgeries, procedures and recoveries. The dean noted that I was the only student in the history of the school, with this diagnosis, to successfully graduate with their J.D. She also noted that the other students similarly diagnosed either failed, or dropped out. Not me. It's not my style.

Michael and I met in New York City while I was attending school, shortly after my diagnosis. From the start Michael and I were very open with each other about our lives. From that point on we were, and are, very much together. Michael attended every doctor appointment, slept on many hospital floors, was familiar with all of my medications and that ensured I took them properly and timely. Michael took on the role of my caregiver from day one and for the last 11 years he has been my sole caregiver. Unfortunately, I no longer have any relationship with my parents. They said my continual problems were too much of a burden. Accordingly, I received no support from them, whatsoever. Michael, however, from the start, has always done everything possible to care for me, help me, ease my pain when possible, get me to appointments, sit in waiting rooms during surgeries and other procedures and care for me even when I am being difficult.

In June of 2007, Michael and I were married.



Although law school is typically three years, due to my illness, and with the help of my dean, I was able to complete my studies in three and a half years, enabling me to take one less course per semester, thus easing my workload. After our marriage in June, I had but one final semester to complete that fall.



My illness, however, had other plans for the fall of 2007. From September through December of that year my health rapidly declined. My SLE was “flaring”, I was in excruciating continual pain, often to the point of losing consciousness. On many occasions Michael would find me on the floor, bed or couch in a fetal position. I missed many classes during this time and spent most of that fall sleeping, and attending doctors' appointments. In November I had a biopsy of lymph nodes because doctors suspected I had lymphoma. During this procedure, IV contrast dye was used(I can no longer have IV contrast dye for reasons which will follow.) On December 7th, 2007 I went to Mount Sinai for an emergency appointment with my rheumatologist. At the appointment I explained that I had been losing consciousness, I lost weight and was down to 97lbs, my blood pressure was 58/43, and my overall appearance was that of someone gravely ill. Rather than hospitalizing me, I was sent downstairs for lab work. A stat order. I had blood drawn, and for the first time in my life was unable to provide a urine sample. At the time, neither Michael nor I were aware that this was an indication of renal failure. I was told to take the specimen cup with me and bring it back when I could produce a sample. The next week is one that I have little recollection of. I slept mostly, could not hold down food or liquid, produce urine or bowel movements. The following Tuesday, December 12th, after not having bathed or showered in more than a week, Michael attempted to bathe me. After which Michael had me hold the sink so that he could get towels, as I could not stand up on my own. I then proceeded to have not one, but two severe seizures, collapsing on the bathroom floor. Wrapped in towels, and at my doctor’s direction, Michael carried me out of our 3rd story apartment down 3 flights of stairs, and rushed me to Mount Sinai’s ER. Upon arrival I was informed that I was in acute renal failure. We asked how they could knew, as they had not even yet assessed me. We were told my lab reports from December 7th showed severe kidney failure. No one had notified us. On December 12th, my creatinine was 21 (almost 2000% higher than normal), my BUN was over 250 (some 10-15x higher than normal), my blood pressure was approximately 38/23, my potassium exceeded the lethal injection dosage given to death row inmates. Realizing this, I was then rushed into the ICU for emergency hemodialysis. My husband was told he could not be in the room and was asked to remain in the waiting room. Shortly thereafter, it was suggested to him that he should “make proper arrangements” and was told it was unlikely that I would survive the night. A team of 15+ nurses and doctors worked furiously to save my life. Due to my extremely low blood pressure and the emergent necessity for hemodialysis, I was unable to be sedated. They proceeded to cut into the major artery in my right leg. I went into shock. The last thing I recall was the sound of swishing from the dialysis machine, then it all went black.

There have been medical articles written about my case and the miracle that helped me to survive. Upon regaining consciousness days later, it was apparent that something had happened to my brain. Due to my low blood pressure, anoxia (loss of oxygen to the brain) and the potassium poisoning, I suffered brain damage. Primarily, it was to the left side of my brain. My speech, short-term memory, and the right side of my body were all affected. I had to complete a year’s worth of cognitive rehab at Moss Einstein Center for Rehabilitation. We were told by many doctors that I would never be able to have children. However, during my time in rehab I did become pregnant. Although still recovering and going through rehab, my pregnancy for the most part went smoothly, with the exception of my developing preeclampsia at 35 weeks, and gave birth to our first daughter Emma.

My SLE, however, flared out of control after giving birth, I was in the most severe pain I had ever experienced. All happening with a new baby to care for. I was given the heavy narcotics, from liquid morphine, to fentanyl, dilaudid and Tylenol with codeine. Nothing was working and, without being aware, I was destroying my body from the side effects of these poisonous opiate medications. It is widely accepted that opiates cause drowsiness, loss of consciousness and dehydration (chronic kidney disease patients can go into renal failure very quickly from dehydration). As a new mother with a new baby to care for, the medications were not allowing me any quality of life, and were putting both myself and my new child at high risk, as I could not care for her fully, could not remember when she was last fed, what she ate or when she was last changed. I could not drive her to doctor appointments; I could not be left alone with her, or hold her, as I could potentially “dip out” and drop her. My primary pain medication is 2-4mg Dilaudid (10x stronger than morphine and 5x stronger than heroin) to start with, for pain. There is, however, no start, no finish. Just constant pain. So, I am a drug addict, by default. I can’t be in that kind of pain constantly and function, nor can I function on opiates. Sometimes the pain is so bad it feels like my bones are being sawed through by a not-so-sharp-toothed hacksaw. There’s no question, dilaudid takes away some pain, however, it causes destruction of my liver, constipation, bloating, massive distention, actual heroin addict-like side effects, constant itching and no awareness of the moment or feeling of being present. No memory. Angry lash-outs at my family. Then, of course, withdrawal.



Michael and I decided we had to find another way to treat my pain and conditions. “There has to be another way”, we said. I switched to all local doctors. The constant traveling to New York was not possible. I found a new rheumatologist, primary care doctor, and other relevant physicians. All of these doctors, had conversations with me about the use of Cannabis, the respective benefits for my myriad conditions and the side effects from the resulting treatments (opiates). They all asked if I had ever tried Cannabis and what my experience with it was. I said I had tried it and I never had a bad experience. They explained to me that Cannabis can be greatly effective at treating pain with no harmful side effects. It is an anti-inflammatory, proven effective to treat the SLE inflammation, as well as well as most of my other conditions, and it was something that I should consider if I wanted to find relief without narcotics and opiates, I wanted to enable myself to function like a human, a mother, a woman, and a wife.



I then took to the streets to get some Cannabis. Having no experience, I wasn't sure what I was looking at, for etc. I ended up getting what's known as "wet weed", which resulted in a hospitalization for me, as I became quite ill. "Wet weed" as I later learned, is laced with embalming fluid and or PCP. That and an experience or two with moldy Cannabis, and I had had it. We said, "there has to be a better way". At home cultivation was where we found ourselves.

Also, wanting to avoid the perils and criminality of obtaining what I needed from others, we decided to give it a go on our own. The process was heavily researched; it had to be completely organic, strains had to be high in CBD's, as that is the source of the anti - pain and anti- inflammatory power. Another ingredient, THC, provides relief for my muscle spasms and is reparative for my nerve disease, fibromyalgia and provides general anxiety relief.

I was doing much better. After a miscarriage, I became pregnant in early 2012. At around 20 weeks, doctors wanted to terminate my pregnancy as my body was just not cooperating. We monitored closely, and pressed on. I was hospitalized for 4 months prior to delivery at 33 weeks. Lily made it out at 4lbs 9oz and went straight to the NICU for almost 2 weeks. After more time in the hospital, we took our second daughter home.



Long story short, after a failed attempt (no green thumb here) and more research we actually produced functional medicine. We finally had functional medicine that worked! Oh my god, it worked. I felt so much better, I had an appetite; my pain, while not gone, was minimal and I could, finally, focus on something other than the pain. I was able to regain a working GI system, I was able to sleep, my fibro was not as active, and my lupus was under control. I was crushing birthday parties for the kids and getting almost everything else under control. All while working full time. It just works! I was functioning every day, working normally. No longer on opiates.

We were extremely careful, sharing our new medical option only with family, but it eventually came to the attention of the authorities who agreed that great care was taken by us to ensure safety, discretion and, most importantly, the health and welfare of our children… They (the authorities) acknowledged the medical need was there and, further, that it was clearly being used as medicine ONLY, and never did it leave our home. “But the laws are the laws”. I would, however, qualify for the use of medical Cannabis in every state that has already legalized it. We had decided to move to California, but now we must stay here and fight! That is why we have launched this campaign; to prove our innocence, to establish precedent and public policy. To shape laws, it costs a great deal of money. A lot of money goes directly to legal fees. This is a fight we’re both willing to take to the highest court in the land if necessary, should the law bar me from the use of the only medicine proven to let me live with minimal suffering and, hopefully, prolong my life. Others deserve these same rights.

If we lose, we could be looking at years in prison, revoked drivers licenses (per PA law) and felony records. All in the face of certainty that the 2016 election will decriminalize Cannabis.

A loss in court might force us from our home and community, due to my need for medicine, at a time when we are least able to afford the move, to a state that says “Hey, you’re sick, you’re good to go if cannabis works best for you”. But not Pennsylvania, which says it’s biggest problem is opiates and heroin, then looks me in the face and says, “I’m sorry, now you’ll have to, once again, take opiates to deal with your pain and other medical issues. We know that they will destroy your body and your mind, and shorten your life but, hey, that’s your problem. Have a nice (short) life”.

We don’t know how much this legal battle and continuing medical treatment will cost. But we do know that we can’t do this alone. We need your help, large or small, in any amount you find comfortable, and ask that you join us, in prayer and in deed, as we battle on.



Thank you all so very much for the time you have spent with me today, the patience to read my story, the good thoughts we may now share, for your support of me, my family and this cause. I will continually update all of you as we go through this process.

They say “You can’t fight city hall”. Sure you can. Let’s prove it.



Peace and love,

Erika

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  • Randy Rolen
    • $25 
    • 9 yrs
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Erika Zorn
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Warwick Township, PA

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