Sandra’s Story: Cannabis Battling Pain, Rare Disease

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Sandra is both well-spoken and a good journalist - she tells her story so eloquently we may invite her to write some for others.

She’s fought a rough battle that includes diagnostic after diagnostic and pain from what many can’t see or tell is wrong – a disease known to be one of the most brutal types of disabilities imaginable. Fighting these issues with cannabis has been her way of life and her display of photos along with her story makes this article worthy of a click.

Mike’s Medicine’s is still a publication featuring patient testimonials and more yet to carry any advertising after years – so that statement comes from the heart and soul. She’s shared such an intense story of both her journey through the maze of healthcare and how she’s using the plant for survival. Every patient is different and Sharon has shown her instinct to stay well is strong – not only did she gain access for herself but created it for others to get the valued plant as well. She’s fighting even now but still finds ways to create avenues to medicate herself and others. Sharon is dealing with a diagnosis that’s pending – she may have breast cancer so let’s read on:

“I have been in and out of the medical field since I was 17 so I have always known a bit of information about Cannabis in relation to medical use. As I grew in my career, I decided to do more research outside of the normal sources. I was highly impressed with how different cultures used both Hemp & Marijuana in so many different ways & aspects of daily life.

I was a sickly kid, not always being believed that something was wrong I was dismissed a lot. But when we would get to see a doctor, I was always being poked, prodded & medicated & misdiagnosed. We had to travel for appointments sometimes because one Village I lived in as a kid in SE Alaska had no doctors, so they kind of just made the most of those appointments as it was very expensive to travel due to there being only 2 ways in & out, boat or plane.

Back then, it was hard to see a Physician because Alaska’s medical community, even today as much as it has advanced & grown, is still very limited & small. However, because I had grown up in Alaska Native culture, I have always been partial to the Holistic approach to health & wellness & when I was old enough to make my own decisions on my health, I went the way my body best responded, Holistically.

Some of my health issues continued from childhood, ones that they never believed or could ever find. I was told for years I was complaining about nothing & to stop being a hypochondriac. Well fast forward to my early 30’s & I was once again sick for the umpteenth time that year alone, yet nothing was explainable & I was misdiagnosed. A few short weeks later, what normally would have been a tiny 3-day sniffle fest, nearly took my life.

I will skip over the E.R. visit & all that entailed, but I will say that against all odds & very nearly dying, I made it back to Alaska for Thanksgiving on my originally scheduled flight, (within an hour & 20 min of departure), several hours after going to the hospital to make sure I was safe to fly due to coughing up fresh blood the night before & again that morning. I am alive today ONLY because I refused to “just stay home & go to sleep”.

Not one person in my family wanted me within 1,000 miles of home because they all thought I had a cold & my grandmother had just finished a stacked radiation treatment over 30 days & was at a 98% chance of dying if I exposed her to my “cold”. I understood & was very determined to stay far away from her as I possibly could, but in no uncertain terms was I standing down on this. I WAS coming. Had I done what they told me to & never gone to the E.R., I would have died in my sleep or passed out somewhere in the apartment & died due to lack of oxygen & severe arrhythmias. 2 of the main things doctors brushed off over the years with some lame excuse or another, btw.

It was a treacherous, grueling, journey & thankfully I was not traveling alone. Once home, I went to the E.R. multiple times over a 1 week period experiencing a myriad of consistent but generic symptoms. After my 3rd visit, I saw my least fave doctor who loved to dismiss me, act like he knew what was wrong with me, prescribe medications I was allergic to, (which had been in my chart for years), but did not believe I was still allergic to it & medications that just did not work because he was wrong. I finally convinced him to track down the E.R. doctor I had seen a week prior in Las Vegas, NV.

These are of me a few weeks after I almost died & was on Chemo/Steroid/Folic Acid pills. & was consistently seeing different specialists. I also lost my voice over a 4 month period & complete it for 2 months. I had to wear Holter Monitor for 30 days 24/7. The day I got it on & the day I turned it in. The day I turned it in, they immediately took me to Day Surgery & implanted the newest & 1st of its kind ICM that is connected to my phone & put me on daily medication.

It took several hours but he found him & got my chart from that day. He never apologized but he did start acting like a real doctor from that point on, giving me the tests I had already been asking about. Once he got all the tests done, he gave me the proper medications to open up my lungs & bring down the inflammation in my body. They were at the highest markers he had ever seen & was impressed I was not screaming in agony. I told him my pain was excruciating but after living with it for years, it was now just a normal part of my life. Once he cleared me to go home, he set me up with a specialist to see from then on.

I saw this specialist in January of 2018 & she sent me to numerous other specialists, sometimes 2 a week, over a 3 month period & weekly blood work to monitor the medications I was on. They finally determined it was safe to take off Lymphoma as a diagnosis & 1 last procedure & test confirmed I have a disease called: Besnier-Boeck-Schaumann or Sarcoidosis.

The majority of medical professionals worldwide either know nothing about it or do not believe is real. Of the very small percent that does know something about it roughly half of them have only heard of it but otherwise are highly uneducated on it, as is Google & pretty much every single search engine we have. There are many, many, many stories of people who, be it newly diagnosed or are seasoned Sarc Warriors, have had doctors that use Google or other sites, right in front of them & then proceed to tell them that it is no big deal & they are imagining all these issues, etc. We that have this disease are required to be our own advocates & we lose friends, family, spouses/partners, jobs. We spend years in court fighting for disability approval & a lot of us who suffer chronically, choose to end this life because it is so completely devastating & just soul-crushing on every level possible.

It has been dubbed the “Snowflake” disease because everyone who has it responds differently to it and there are variations of the disease as well. Some people have every variation at the same time. It could be acute or chronic. It could be systemic or secluded to 1 area. It can be asymptomatic or it could cause a million different signs & symptoms. Our bodies cannot process Calcium (Vit D, which is a hormone btw, NOT a Vit), properly so we have to limit what we eat & we cannot have too much time in the sun & if on certain meds, you cannot be in direct sunlight period. Often times the medications themselves make you just as sick or worse than the disease itself. No matter what, there is always permanent damage done that results in being disabled, having transplants done & causing a slow & painful death or sudden cardiac death. This is a mystery disease. Every single molecule you are made of is not safe & there is no guarantee that even if you achieve remission be it by treatment or spontaneously, that it won’t come back 100 fold or just drop you in your grave in less time than it takes to blink an eye.

There is no known etiology or cure even though it has been around for about 200 years but as science & studies evolve they have some possible ideas about the etiology. The only way they know how to treat the common issues it creates is by giving high doses of Corticosteroids, Chemotherapy medications & a vast number of other meds depending on where the disease is occurring in & on the body. It has also been dubbed the “Great Masquerader” due to it pretending to be Cancers, Auto-Immune Diseases, Cardiovascular, Brain, Muscle, Nerve, Bone Diseases, etc. It also causes the same diseases & disorders that it masquerades as, oftentimes causing multiple ones to occur simultaneously while still doing damage itself. Mine is systemic & I have permanent damage to several areas in my body, including my teeth, because I went most of my life being misdiagnosed or dismissed & the dots never being fully connected.

November 22, 2020, will be 3 years to the day I came within 30 min of death. In that time, I have been able to get off of all my medications and have virtually no major symptoms at the moment because of CBD & being careful with my nutrition. The dosing really changes on the day. I have days I do not use any Cannabis & I have days even when I use different types throughout the day, (i.e. Topical, Pills, Sprays, Drops, Edibles, Flower) because I cannot function and am bedridden. It def helps with my constant pain, fatigue & insomnia, brain fog & appetite, even on my really bad days, which still occur but are now fewer than before. I always try to make sure I have a small supply at all times so that I can make it through in case I run out or cannot afford anything for a month or so.

Most of my friends & family & even one of my specialists have been very supportive of my choice to use Cannabis. Some are not so understanding either due to being uneducated about it or their Spiritual/Religious convictions. However, they are not negative about it, they just do not agree with using it & would prefer not to know about it or be around it.

I often get asked about Cannabis & if I recommend stopping meds or how it will react to certain meds because of my Medical background & personal & professional experience with it. My only advice is to, first, talk with your medical team or doctor & then really do research on it. Second, be very careful WHERE you get your products from. Always ask for the labs & have a set of questions available to ask whoever is selling them. You will find out very quickly if they know their stuff! Third, RESEARCH! RESEARCH! RESEARCH! Really dive deep into it! Knowledge is power & can literally save your life! When I worked in the Cannabis industry, I never stopped learning, even if I had tried, because there is always so much to discover & to explore. As far as the right product or dosing, you just have to experiment a little bit & find what works for you. Every person is vastly different in how their bodies respond to Cannabis in all forms & strains.

The reality of my disease is that even when I am in a relatively “healthy” state, it will flare up & wreak havoc on my body. Sometimes I am asymptomatic but because I am so in tune with my body, I know when something is up even if I never end up in a flare. Once in a flare or if it starts causing issues like Cancers, Auto-Immune Diseases, etc, then I will have to start the whole process over again with medications & possible surgeries & all the side effects that come with all of that. It is a long process because it is essentially a process of elimination not diagnosis. So they basically poke, prod, & scan you for everything in it POSSIBLY could be & THEN if nothing comes back positive, they will CONFIRM it is your disease & you move forward with the proper treatment plan.

Currently, I am waiting to see if I can get in for some biopsies & scans for both Breast Cancer & Thyroid Cancer as I have symptoms & signs suspicious of those two things. Due to the CoVid-19 Pandemic & being 200 miles away from my doctors, I am having trouble getting seen at the moment. However, I do not stress about it because I know that God has got me no matter what & He will make a way when the time is right. I am a Warrior! I am not afraid of a challenge & I am fully prepared to fight to the death if need be! My support system keeps me in check & of it, Cannabis & my faith are the 2 constants I lean the most. They help me to live every day, good or bad, to the best of my ability & keep myself prepared, grounded for whatever happens.

I think if done the right way, educating the general public on Cannabis, including our bodies Cannabis Receptors, with factual & scientifically proven studies from all aspects & Medical/Holistic/Nutritional/Historic professionals, the stigmas surrounding Cannabis use are going collapse. Once that fully happens, doors will be opened & eventually, bridges will be built connecting all of us in every field across the world. I feel we are well on our way to meeting a good portion of that goal within the next 10 years.”

Sandra’s story is unedited – as is the way she told it!

It’s a pleasure to have Sandra tell her story on Mike’s Medicines!