Sarah’s Cannabis Journey: Battling Pain and Rare Disease While Researching Plant Medicine

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"Desperation and google led me to find CBD. I was bed-bound with extreme pain daily, no longer able to make it the 10 steps to my bathroom without assistance. I went to google willing to try anything to give me just a little bit better quality of life. "

Having any kind of disability can put a damper on life-limiting our activities. As laws loosen to allow access globally, people are finding the solution to their situation in the cannabis and hemp plants. “It’s been a long journey from being a western medicine patient only to learning about my disability extensively and how I could use cannabis in the right manner to help myself” Sarah Schwefel of Las Vegas stated in an interview about her path that led her to research the plant. She’s known on social media and beyond for sharing he inspirational journey as a cannabis warrior, but behind the scenes, she’s taking a college-level course and learning what wasn’t taught in college about how our bodies cannabinoid receptor system works.

“I’m excited to take the final test on the Endocannabinoid System” she shared with me. Having a bright research analyst such as her on the team at the Global Cannabinoid Research Center is as intense as Sarah’s story about how she discovered plant medicine and battles Ehlers Danlos Syndrome with it. In intricate detail, she explains her disability, life, needs, and desires with cannabis for herself and others.

“I want to learn as much as possible so I’m an informed educator and speaker” Sarah explained, “It’s important to know what you say is as accurate as possible.” This bright and talented researcher has ventured into an area of cannabinoid medicine that few patients delve so deeply into – the fascinating Endocannabinoid System – the course and test she’s taking is 12 units of Continuing Medical Education and designed for medical professionals. “Research is how future medicine will be made both for me and others that are in need of healthy alternatives to what’s currently available in pharmaceuticals” she stated. Let’s read her interview as her story is beyond fascinating:

How did you find out about medicinal cannabis and CBD?

“Desperation and google led me to find CBD. I was bed-bound with extreme pain daily, no longer able to make it the 10 steps to my bathroom without assistance. I went to google willing to try anything to give me just a little bit better quality of life. My research led me to CBD. I already used cannabis, illegally, for a bit of pain relief so cannabinoid medicine was not something that scared me. And really all I had to lose was pain. My first bottle arrived on my birthday, May 22 of 2017. It was wonderful and helped take the edge off enough to help me tolerate life a bit more.

At the time I did not know much about CBD and now that I know how to find quality products I do get more relief, however, then it was very minimal. In January 2018 and my then-fiance came to Las Vegas from Wisconsin to get married. It was my last vacation before I got a wheelchair. We both knew that. I got off the plane in horrid pain, thinking there is no way I can survive a 3-day vacation and somehow walk down the aisle to marry my husband. I went to the dispensary, as I already used cannabis in Wisconsin, hoping just to get some relief to make it through.

From that moment, my life was forever changed. I was lucky to get a knowledgeable budtender that knew exactly what terpenes and cannabis I needed. I tried a strain grape stomper with high myrcene that night. I was struggling to walk, smoking my joint, with tears streaming down my face and then it felt like a wave crashed into me and took so much pain and suffering with it. I sat on the ground and just cried. My first thought was is this what it feels like before I lose my ability to walk? But there I was walking like I haven’t in years, without so much of a fight in every single step.

Sarah and I at CBD io/Vape International in November, 2019

That weekend I tried an array of different cannabis flowers, edibles, and tinctures and lived the best 3 days I had in years. Better days than doctors said were ever possible for me again. My husband promised to get us to Vegas and 8 months later in August 2018, we became Nevada residents. Cannabis and hemp saved my life. Without a doubt I am here today, still fighting, with hope for my future, because of cannabis and the dry climate combined.”

What are you treating? Can you tell me how the health issue affects you?

“I have a connective tissue disorder Ehlers Danlos Syndrome. It causes chronic pain, gastrointestinal problems, dislocations, spinal instability, and so much more. Collagen is found in every area of the body and mine is faulty which in turn means, I am quite literally falling apart. My main problems are dislocations, pain, muscles spasms, and my spine. As a kid, I never had too much pain.

Dislocations here and there, but nothing debilitating. At the age of 22, I was just living my life and got a compression fracture at T11. From there, Ehlers danlos syndrome took a turn for the worst fast. I have severe spinal instability which has now resulted in cervical stenosis, 4 herniated discs, unstable compression fracture, osteophytes, bone spurs, degenerative disc disease, lumbar arthritis, kyphosis, neuritis, occipital neuralgia, paraesthesia, and I also have slipped disc often due to the instability and collagen defect. In addition to my spine injuries, I have dislocations/subluxations in my shoulders, ribs, collar bones, fingers, ankles, knees, and hips.

My shoulders and ribs cause the most havoc and sublex or dislocate almost daily. These are the main problems EDS causes. Unfortunately with collagen being the main protein found in the body, there is little that goes unaffected. I have gastrointestinal problems (diverticulitis, gastritis, hiatal hernia), slow wound healing, tachycardia, migraines, and temperature regulation problems (Raynauds) as well.”

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How do you use cannabinoid medicine? What types and any dosing information that you would like to share?
“I use an array of CBD products including tinctures, lotions, vapes, flowers, bath bombs, and topicals. When it comes to cannabis it’s crucial that I get the right numbers, THC, and terpenes, to get the desired effects. I use flower, vapes, concentrates, RSO, and edibles. When it comes to flower and concentrates terpenes are crucial. My body thrives off of myrcene and linalool in particular, so I always buy concentrates and flowers with high numbers. Many times I can not find high linalool so I incorporate lavender as much as I can into my daily routine.

With flower, if it does not have at least 5mg of myrcene it barely touches my pain. The more myrcene, the more relief I get. This is why labeling is crucial everywhere so patients can accurately buy their medicine. Rick Simpson Oil is a wonderful switch from the tinctures I originally started with. It is much more potent (anywhere from 500mg to 750mg a gram) and is what my body needs as I take very high doses. The reality is the more cannabis I have, the less pain I have, the more I can walk, however financially the amount I need is not attainable.

While vacationing I felt a 2 in pain, daily I deal with about an 8 in pain. Mind you that was with almost an ounce of meds every single day to hit a 2. The math does not add up for the majority of the world to afford what I and some other patients need to really thrive. I am thankful for what I have now, but it does feel like a sick game of psychological torture knowing there could always be more relief. Many patients have to face this reality and I think it’s important as an industry we really look at what we can do to help patients get the amount of medicine they need to live the best life they can.”

Sarah held up her notes as she learns about the Endocannabinoid System and prepares to take the same Certification Testing that doctors do – it’s AMA Approved.

What type of reaction do you get from friends and family? Have you had any interesting experiences in relation to that?

“I am thankful that my family supports my use of cannabis. My husband of course is all for anything that gives me a better quality of life, as is my mother. She moved to Las Vegas with us as well. There was no question. She saw a video of me walking and smiling and said let’s go, never even having been to Vegas before. I have a stepdaughter and after moving we thought it was important to let her know about cannabis, as I use it throughout the day to walk, be out of bed, function and it will be around her

Explaining to a 13-year old that cannabis is medicine and not a drug to just get stoned was a hurdle. She had many questions including if I would be high all the time. After a while of us living here, we had taken a drive up to the mountain. With cannabis, I was able to make the drive, and even get out of the car when we stopped to see the views. I thanked her for being okay with us moving and being so mature about everything, and she said, “I am just happy we can do things again and I have my Sarah back.” For her health final in eighth grade in Wisconsin, she wrote a paper on why cannabis should be legal for medicine and I was so proud. Coming from a state where it is still illegal it’s wonderful that she can understand it is medicine for many.

For the most part, I have no shame. I advocate and yell from the mountain tops what cannabis does for me. However, there is one person in my life who does not know and that is my stepdaughter’s mother. She is against cannabis use and has made it known many times. She knows about us moving for the dry climate and supports it, but does not know about cannabis. Honestly, I have not told her out of fear. Fear of her withholding my stepdaughter because I need to medicate.

This is the reality when it is not federally legal and in some states, it is a schedule one substance still. My plan is to tell her when she comes down, to be able to show her I am a better parent with cannabis as I am out of bed, living without excruciating pain and most importantly I am fully functional. I am not out here getting stoned, I am medicating. I know it may be a matter of time before she finds out and I hope to be able to help break the stigma she has around it to understand that I and so many others really are just medicating.”

Did you take pharmaceutical medications? If so has cannabis decreased this?

“Before medical cannabis I went doctor to doctor searching, even begging for help. I was miserable and suffering day in and day out. I was given an array of medicine including antidepressants, nerve medications, anti-inflammatory, and muscle relaxants. They all came with side effects and unfortunately, none reduced my levels of pain. At one point I was on over 20 pills a day and somewhere causing severe side effects including suicidal thoughts and severe muscle cramping.

One even came with low back pain. Talk about irony? I was offered injections and when I refused due to the risk, I was often written off as a drug seeker. And you know what? I’ll take that label. Anyone would be a “drug seeker” that has this much pain. Anyone would want relief. Due to the opioid crisis pain medication was taken away from me after a short time for risk of addiction. Meanwhile, I wanted to end my life, because of the amount of pain I had daily. With cannabis, I have 7-8 in pain daily still. The reality is yes, I do want pain medication, but it is not an option and frankly, I did not move 1,800 miles to continue begging doctors for help. So now I do not take any medications except for plant medicine.”

What else would you like to share about your journey?

“I was once a career woman working 50+ hours a week in hospitality and marketing. When my chronic illness took over I lost myself completely. Pain engulfed every second of my life and I had to grieve the old me. Now that I have cannabis, my life is changed. I am learning who I once was, never completely left, she just shifted into the new evolved me. Now I use the skills I acquired over the years to advocate for patients. To ensure everyone has access, to share education to help patients accurately pick their medicine, to help make the changes happen that are necessary so everyone has access to what they need and deserve to live their best life possible.

I went from a career woman to bed-bound, to now walking into expos and speaking on stage with professionals in the cannabis industry, being able to represent patients. Even when it seems like there is no tomorrow, even when things seem impossible, just know that maybe, just maybe, your future holds so much more than what is happening today. I now dedicate my life to fighting for patients, helping patients, and yelling from the mountain tops what cannabis has and continues to do for me. Because if one person can hold on, keep fighting, and find cannabis for themselves. Then somehow it makes my pain worth it. “

What advice would you give to those considering trying out plant medicine like this but waiting to get more information?

“All you have to lose is pain. There are no adverse side effects except maybe getting the “munchies” and getting high. That’s it. People are having less pain, fewer seizures, much higher quality of life, all because of cannabis. Please if you have access, try cannabis for yourself. If it doesn’t work, it doesn’t work – but the majority of the time it does.”

How is your life now after you've discovered how to heal/treat yourself differently? How has your activity level increased?

“My life has drastically changed for the better now that I have access to legal cannabis. I am out of bed each day, I am walking with my cane, but have not used my walker since a few weeks after the move. I go on adventures with my family, can sit up, play games, watch movies, and eat dinner with them, so many things I thought were gone forever I am slowly getting back. I have a lot of pain each day still, but I am able to live like I haven’t in so many years, like I did not think was possible. With faulty collagen, my body dislocates almost constantly. This causes muscle spasms as my muscles panic and tries to hold me together in turn causing more pain and more dislocations.

Now that we moved I am doing physical therapy to help strengthen my muscles and have them do the work my collagen can not. This was something I tried numerous times in Wisconsin, but I could not do. My body could not tolerate the exercises. This had nothing to do with mindset and everything to do with pain control. I am now 10 months into PT and have a lifetime to go, but slowly I am getting stronger. Is it extremely painful, however, cannabis and dry climate are allowing me to push my body, strengthen, and in turn have a better quality of life in the long run? Cannabis gave my husband his wife back, my mother her daughter, and gave me my life back, my smile, and my hope.”

What myth about cannabis do you believe needs to be squashed?

“Cannabis is medicine. I am not out here getting “stoned,” I am medicating. It is shameful and sickening that so many people are allowed to suffer when there is an option, cannabis, that could help them. I laid in bed for many years with no hope for a future, no want for a future, because I was living in so much pain. I could not walk to my bathroom without a walker or my husband holding me up.

I could not get food for myself. I was bed-bound with no options. I moved 1,800 miles for access. If I was still in Wisconsin I would still be in bed all day, suffering and honestly, I don’t know if I would still be here today. There are so many people suffering unnecessarily. Eight states still have no laws legalizing or decriminalizing cannabis in any way, Wisconsin included. If animals should not be allowed to suffer, why as a society can we allow humans to suffer when cannabis mind you are proven to have an array of medical benefits and can help so many people?”

If you could send a message, any message to the world- What would it be?

“To hope for tomorrow. There was a time I was suicidal. I did not want tomorrow to happen as I did not want a future filled with so much pain and with only getting worst. I would park and cry, calling my husband because I was so afraid of myself. Of what I wanted to do, because of pain. And then I found cannabis. Cannabis and dry climate combined are saving my life.

I have hope now. I have a future I want now. If someone would have told me this was possible in my darkest days I would not have believed them, but it is possible because I am living proof. So please do not give up, keep fighting because you never know if things can change for the better.”