Jenifer’s Story – Autoimmune/Chronic Pain
My name is Jenifer Edelen, I am 30 years old, and I have lived in pain my entire life. There has never been a day of my life that I can remember not being in pain. As a child, I thought that this was normal and that everyone felt as I did. I was not diagnosed with an autoimmune disease until I was 19 years old because I was so sure that everyone must have this same pain. It was not until I started having problems with my organs and much more severe pain that I finally realized that something was not right. It was at the age of 19 that I caught a cold, one that would not go away but only got worse. The doctor believed I had walking pneumonia; however, it was not going away. As I continued to get worse, my lungs collected fluid and were on the verge of collapsing. Fluid also started to gather around my heart with no explanation from my medical professionals. My joints were in such excruciating pain that I could no longer walk without assistance. I had to move back in with my parents, unable to care for myself.
My mother became my primary caregiver. She had to help me bathe, eat, go to the bathroom, brush my hair, and do everyday tasks that I was unable to perform. Twice daily I would spike fevers of 104 degrees only to return to normal temperature within an hour or two. This quick change in body temperature would often cause me to lose consciousness. I went from a relatively healthy teenager to being unable to walk on my own in less than six weeks. Still, my doctors and other medical professionals had no explanation for what was happening to me. After several weeks of hospital visits and doctors’ appointments, I finally found a rheumatologist that diagnosed me with a rare autoimmune disease called Still’s Disease and fibromyalgia.
Still’s Disease causes my body’s immune system to not always distinguish between normal healthy cells and foreign cells like bacteria and viruses. This causes my immune system to attack my own normal healthy tissue in various areas of my body at any time. The most commonly affected areas for patients with Still’s Disease are the joints, lungs, kidneys, and heart. This constant battle with an overactive immune system is exhausting, and the current treatments can cause side effects that are almost as bad as the disease itself. For example, I am no longer able to take many of these medications orally due to the liver toxicity they cause. I currently take 10 pills per day, two doses of hemp oil per day, one injection per month, and an infusion every month to try to keep my immune system suppressed and my symptoms under control. I am currently running out of options for treatment, as my immune system has learned how to get past the medications.
While out of state with my husband on vacation a few years ago, we decided to try medical cannabis infused edible products that a friend had given me. For the first time in my entire life I did not feel any pain or discomfort in my joints, organs, or muscles. I was completely relaxed, completely comfortable, and completely NORMAL. We do not have access to anything like that here, but since then, I have been using hemp oil and it has helped me come off of the anti-inflammatory medications and sleeping medications. Cannabis has been shown to have anti-inflammatory qualities and to have other effects on the immune system in helping suppress overactivity. I cannot explain how much it would mean for people like me to have access to all medical cannabis products.
It would be a blessing to anyone with an autoimmune disease to be able to try this medication. For some South Carolina patients, having access to the full range of cannabis medication could be the difference between life and death. For others, it could finally provide a dramatically improved quality of life with far reaching benefits. Why is it that this kind of medication that can be so crucial to so many is unavailable in our state, when patients in 29 other states have safe and legal access?
Please allow me and thousands of other seriously ill South Carolina residents to participate in a compassionate state-regulated medical cannabis program. Please allow us to have the legal means to live a quality and fulfilling life with the help of this life-saving medication.