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United Patients Group is happy to be here for all types of patients. One of our patients Alexis, has shared her struggle with Late Stage Lyme Disease and how she found relief in Medical Marijuana. This is her story…
My intense suffering has made me desperate for a solution. On the morning of June 6th, 2008, while working on a research paper, I suddenly felt a horrific slicing sensation as if a blender was tearing my left arm into pieces. I stared at the throbbing limb. It was so painful I expected it to be bleeding; yet, it appeared to be in perfectly fine condition. No attack, no implosion, just my nerves firing out of control, and me helpless to fight back. From that moment, my perception of life changed completely.
After almost two years of searching, I was diagnosed with fibromyalgia and multiple joint pain. At twenty years of age, a rheumatologist looked me in the eye and insisted, “You need to learn to deal with the pain because it is going to be like this forever. You can focus on maintaining a perfect diet and sleep schedule, and with exercise you might see little improvement. But don’t hold your breath.”
That wasn’t good enough for me. Pain is a signal to a problem, not a diagnosis. I wasn’t going to stop looking that easily. It took seven specialists and eleven trips to the emergency room before anyone could find my diagnosis. I suffer from Late Stage Lyme disease.
On average, most Lyme patients go undiagnosed for five years. It is a cryptic condition. It wasn’t until I had symptoms in almost every system of my body that someone could put a name on what I was suffering from. My doctor explained to me that my disease is under wide debate in the medical community. The Center for Disease Control does not even recognize the chronic form.
Usually, being diagnosed sheds light on the situation. Not for a Lyme patient. Too little is known about the disease and its symptoms… My road to recovery with this disease is as unique as my dental records. The experience is different for every Lyme patient; the symptoms present head to toe. Yet, most of the victims maintain normal lives, hiding our painful truth behind our pride. A large percentage of us, myself included, look healthy to the naked eye. I know and feel my curse too intimately to ever be fooled.
Pain is an enigma. Our nerves are evolutionarily programmed to warn us of danger, of a problem in need of attention, but Lyme tricks the nerves into panic mode. I endure a litany of false alarms, and must distinguish when to listen. The pain in my left arm spread first to my right, then down my back and into my legs. I cannot sit in a chair or ride in a car for more than a half hour on a good day without experiencing severe discomfort in my legs and hips. I have developed circulation problems, muscle spasms, ocular migraines, nausea, light sensitivity, head pressure, depersonalization and fatigue. Sometimes I make cognitive errors in speech, and I suffer random anemic fainting spells. I won’t pretend these symptoms don’t frighten me, but over time they have simply become part of my new paradigm.
Living in chronic pain is a commitment to do battle. I have to fight for happiness, and for freedom. I have struggled to establish my particular, even alien, lifestyle. I initially devoted myself to this raging war and lost the first battle; several months of intravenous antibiotics left my digestive track in ruins. The day after Christmas 2010, I was rushed to the hospital to be diagnosed with hemorrhagic colitis. I was taken off antibiotics. Since then I’ve endured a colonoscopy and two endoscopies to diagnose me with gastritis, polyps, esophagitis, and a hiatal hernia. In June of 2011, I was diagnosed with numerous allergies including wheat, dairy, eggs, and tuna. This explains how I lost 25% of my body weight in the last year. I am 5’2” and I weigh 90 pounds if I consume on average 2,000 calories a day. My incessant nausea usually permits only that much.
My dreams and desires have been necessarily altered and adjusted to work around my limitations. My pain controls my freedom. I have been prescribed hydrocodone, oxycodone, lorazepam, and cyclobenzaprine. These narcotics changed my mood and personality, and did not relieve the relentless nerve pain.
My only relief stems from cannabis, but I am desperate for a more permanent solution to the problem. In the hospital, I have needed to have morphine or lorazepam through an IV to accomplish what smoking two grams of cannabis does on the comfort of my couch, in a fraction of the time. I understand the importance of peace in my bones.
Medical cannabis gives me tranquility. The escape from pain that it provides keeps me sane. It allows me to combat the nausea and keep my weight above dangerous levels. With its help I can sleep, use my arms, and even stop my muscle spasms and migraines. I am aware that my freedom is only through an independent agent. I prefer this life to an out-of-control mind-numbing narcotic addiction.
Although I cannot maintain a “normal” life, I am spending my free time writing my story to share with the world. I want to show that while it can be a daunting quest to heal the human body, there is hope to be found.
Even in something as unexpected as a flower.
Thank you United Patients Group for supporting the cause and increasing awareness!