Share Your Scars - Sarah & EDS
Share Your Scars
Written by: Sarah Schwefel
Tell us a bit about your condition
When did it begin? What symptoms do you have?
I was born with a genetic condition Ehlers Danlos Syndrome (EDS), a connective tissue disorder able to effect all areas of the body involving connective tissues, leaving very little untouched. Diagnosed as a young child, with a disease that often takes decades for a diagnosis, many consider me “lucky.” Though the doctor who diagnosed me said it was nothing to worry about, I was just “triple jointed" and extra bendy. He said, she may get arthritis when she is much older and that’s it, but he was very wrong. At 22 my whole life changed when I got a compression fracture in my spine simply by living. No trauma, no accident, just living my life. From there EDS took over my body leaving me now at 30, in constant pain. EDS makes my body looser and unstable with my faulty collagen. This has caused many spine injuries in my body now including scoliosis, kyphosis, degenerative disc disease, stenosis, herniated disc, bone spurs, and unfortunately much more. I have muscle spasms that make my body feel like a wash board with all the uneven spasming muscles upon touch. My joints dislocate and sublex daily, making my muscles spasm and fight harder attempting to hold my body together. I have gastrointestinal problems, my vision has been effected, my whole life has been changed. Everyday is a fight, and every movement and breath brings pain. There are many types of EDS, I am diagnosed with hypermobility type myself, but all can effect an individual differently even within its own sub group. Unfortunately there is a lack of research and massive lack of understanding from the medical community for those of us with EDS.
How has this condition negatively impacted your life?
This condition took my life from me as I knew it and has completely and permanently changed my life. I am a medical refugee, moving for access to legal cannabis and for climate for my health from Wisconsin to Nevada in August of 2018. In Wisconsin I could no longer make it the 10 steps to my bathroom without my husband holding me up. I layed bed bound for years, in agony, with doctors telling me there was nothing to be done. I was suicidal during those times. I did not want tomorrow to happen. I didn’t want a future filled with more pain and constant decline. My mental health suffered with situational depression, PTSD from medical trauma, and dissociative thought process. I was suffering and had no way out and I hated it. Moving for my health changed my life and gave me back that hope for tomorrow, the want to make it till tomorrow. I still have pain everyday of my life. A 7 to 8 on average which takes a toll. It’s hard to feel pain every second of your life. But having tools to help me now, saved my life.
How has your condition positively impacted your life? Has it brought you closer to a community or particular people? Has it made you grateful for your “good” days? Has it shaped your character in any way?
Having this illness changed my life in so many ways. It changed who I am as a person and has been a huge part of shaping me who I am today. Moving for cannabis has been life changing and I advocate passionately for both hemp and cannabis and the medicinal power both hold. I have been able to advocate on stages, speak with doctors, written for magazines, and been able to surround myself with amazing people. I am so thankful to be able to advocate for patients and plant medicine. I am thankful that I can share my journey and help others by doing so. EDS took my life as I knew it. It took everything away I dreamed my life to be. And now I have a new life. Where I am always a patient first, but because of that I can use my experience and my voice to help others and to help make changes in the industry. I became certified in Endocannabinoid Medicine in late 2020 to be able to truly understand the plant that I depend on and fight for. Though I always have moments that I wish I was not sick and that the pain would stop. I do have moments where I am thankful of where I am today.
How do you find emotional/communal/informational support with your condition? Family, friends, loved ones, books, podcasts, blogs, , Facebook groups, community meet ups?
First it is so important to understand that it is okay to not be okay. In my darkest days I found light by talking with my loved ones and finding a community online that understood. When doctors dismissed me, when I layed there with no hope, having friends who understood and I could talk too meant the world. I leaned on the internet to help connect me with others like me all over the world and have made many good friends. I now share my life online and have built a community with so many amazing warriors that help me so much each and everyday. Thankfully I am blessed to have a supportive and loving family I can also lean on for support. I always say moving helped saved my life, but that is only one piece of the puzzle. My family, my community, that saved my life as well. Through the storms I have them to help shield me from the rains, and in the sunshine I have them to smile and laugh with and celebrate the good. For that I am so thankful.
How do you find relief of physical symptoms? What holistic/home remedies do you use? What specific products, brands, practices, rituals, foods, teas, herbs help you find support and relief in your condition?
Primarily I depend on cannabis for relief. Moving for access was necessary for me to have any quality of life beyond being trapped in my bed. I use a variety of methods of consumptions daily including concentrate, flower, vaping, and RSO. With the amount of injury in my body and the dislocations I need much more cannabinoids than the average patient. I also use hemp daily through topicals, bath bombs, sports tape, tinctures, and more. The reality is for me the more I have the less pain I have, so trying to get as much as I can in that is financially possible is the goal.
The dry climate of Las Vegas is a reason we choose to move here from Wisconsin as well. It helps my joints and overall body pain to not be in a humid climate.
I also use a variety of herbs and foods to support my body. Terpenes are a component in cannabis that helps patients greatly and are also found all over nature. One of my favorites is Myrcene. Because of this I drink Lemongrass tea, and eat mangos for example. My body also loves linalool so anything lavender my body rejoices for!
The medical community turned their back on me many times. I have been dismissed and treated less than often with a rare illness that most google just to see what my illness is. Because of this I rely primarily on cannabinoids and what I can figure out naturally to aid me in living the best I can despite it all.
Has the Vital You products or community aided your condition or mindset in any way?
Finding Vital You's products has been amazing for my wellness! With my condition I developed many back injuries which makes laying back in a bath tub painful for me. For many years I could no longer soak, just sit on my shower chair, bathe, and be done. Many look to showers and baths as a time to unwind, I did once, and then it was gone. CBD bath bombs have given me back bath time again. One where I can lay back and enjoy the soak and relax while relieving aches and pains. I love the botanicals used in Vital You's bath bombs, each crafted to bring additional benefits with the CBD to really sooth our bodies. I love to lay back, light a joint with a medicinal blend, and take a moment to relax , take deep breaths, and be thankful for laying in the tub again. And I love getting a gem stone after my soak and learning about them!
Do you find relief from hemp products? If so, how is it consumed and what symptoms does it help with?
Hemp is an amazing plant packed with benefits. I use it for digestion support, mood support, pain relief, anti-inflammatory, immune support; many areas of my body hemp brings support to. I use tinctures, topicals, edibles, flower, concentrates, and much more. I love hemp and cannabis and love to get it into my body a variety of ways through out the day. I love my tinctures for dosing through out the days, and my topicals are a must. I use lotion and sports tape on my body daily and it is necessary to help target deeper aches. I also love soaking in CBD while smoking a hemp and herbal joint blend. So relaxing and helps soothes my muscles and painful joints.
Is there anything else you wish to share about your condition?
Ehlers Danlos Syndrome is considered rare, however it is rarely diagnosed. The lack of understanding within the medical community leaves many patients fighting on their own and this is not okay. Thankfully I can lean on other Zebras and we can share our experiences to help one another and to know we are not alone. I hope one day my voice and others like me will help future Zebras be able to walk into a doctors office and not pay to be googled but actually get the respect and medical care every patient deserves.
Cannabis and hemp helped to save my life and if you are reading this, and thinking maybe I should try it too, I highly recommend giving it a go. All we have to loose is pain and plant medicines are my daily miracle that gave me my life back. If by sharing my story can help one person find it for them selves, and hang on till tomorrow…well that’s why I advocate and share so passionately. I know how much darkness I had and I hope so much to help someone else find some light for themselves too.