Almost 20 years ago, my wife Ellen was diagnosed with a reasonably rare medical condition called Ehlers-Danlos syndrome (EDS). Simply put, this condition limits the body’s capability to supply healthy collagen. Collagen is critical for the production of healthy connective tissue, which is invaluable for normal bodily function. Based on our current knowledge of this condition, no known treatment will cure it. The one approach is to administer symptoms to attenuate damage to the body. One of the vital common symptoms of EDS is chronic pain, together with joint instability.
My wife Ellen and I were each in our early 50s on the time of her initial diagnosis. We were looking forward to a few years of fulfilling, purpose-driven activities. The more we were capable of find out about EDS and its potential impact on a person’s body, the more aware we became that depending upon the severity of Ellen’s symptoms, the trajectory of our lives might be altered dramatically. Ellen’s symptoms, as they progressively emerged, proved reasonably severe and infrequently difficult to endure.
In consequence, the pathway of our lives took us in a recent and unanticipated direction. At one point, within the years following the onset of acute symptoms, Ellen was confined to a wheelchair. This was the results of joint instability and the physical impact of recovering from multiple surgeries; 27 in a comparatively short time period. Ellen and I remained committed to not allowing EDS to dominate our future and undermine our capability to experience meaning and joy in our every day lives. We remained hopeful.
While chronic pain, I feel, proved to be probably the most impactful symptom over time, EDS created a complete host of other hellish symptoms, from extreme brain fog to joint instability and even gastrointestinal disorders. Collectively, together with chronic pain, these symptoms might be physically and emotionally debilitating. Over these past years, Ellen required 27 surgeries to handle tendon and ligament deficiencies and neurological problems created by instability in her neck, and upper and lower spinal cord. Rehabilitation from multiple surgeries over a comparatively short period placed an incredible amount of physical and emotional stress on Ellen. She at all times responded with self-discipline and courage.
Over time, Ellen and I spotted that our life’s circumstances had modified dramatically. We would have liked to adapt to our recent circumstances. We were determined not to permit fear, real or imagined, to deprive us of the hope that we would someday experience the boldness mandatory to withstand the customarily overwhelming impact of this condition on our lives, to comprehend a greater future. We hoped to create the means to administer Ellen’s pain and stabilize her loose joints to take care of a level of normal motor activity that might prove to be our “recent normal.” As within the case of many rare diseases, resources for research were limited. We were under no illusion that any kind of medical breakthrough would produce a cure for EDS within the foreseeable future.
As a pair, we aggressively pursued effective treatment options with little guidance from the skilled medical community. Our first task was to try to locate medical professionals with some knowledge of, and even higher, expertise in treating this relatively rare condition. This search for specialised treatment often proved extremely frustrating, emotionally draining, and at all times incredibly time-consuming. The reason for the shortage of resources to diagnose and treat EDS patients became obvious very early on in our search. Medical textbooks barely mention EDS. The plain result’s a lack of expertise in understanding the symptoms of EDS by the overwhelming majority of doctors. For EDS patients, the results of this deficit often proves disastrous.
Many of the EDS patients Ellen and I even have had contact with over the past 15 years have been the victims of physicians unknowingly suggesting treatment with not only no helpful effect but all too often a harmful impact. The source of the issue, as within the case of many conditions classified as rare, is a scarcity of funding for comprehensive clinical research. Ellen required two surgeries attributable to inappropriate physical therapy techniques being utilized by well-intentioned physical therapists.
Ellen and I were willing to travel anywhere in our quest to seek out an efficient treatment for her condition. This included each conventional and non-conventional practitioners. We were hopeful that some type of treatment did exist. Our greatest resource proved to be other patients who had found themselves in similar circumstances. These contacts led us to several physicians and physical therapists who had, through the years, developed some expertise in diagnosing and treating EDS patients. These individuals were far and few between. We traveled from the East Coast to the Midwest to Texas in our pursuit of appropriate help. Eventually, we were capable of locate several EDS-savvy doctors. Ellen wouldn’t be alive today had we not found this group of skilled, kind-hearted, committed physicians and physical therapists.
The sad truth stays that, given the present structure of funding mechanisms supporting our medical system, few physicians have the time or perhaps the interest in treating rare conditions. It is just not cost-effective, given the financial realities, to effectively utilize a physician’s time because the medical system is presently designed. While we were ultimately successful find doctors and physical therapists able to developing treatments for Ellen’s specific symptoms, the journey proved emotionally exhausting. The method itself was detrimental to my wife’s emotional state, which impacted her overall health.
During her treatment during the last 15 years, Ellen underwent many surgeries. Numerous neurological surgeries presented a substantial risk, and the prognosis was guarded. Through all the surgeries and extensive recovery periods, we might remain steadfast in our commitment to our therapeutic goals. We were determined to make every effort to scale back Ellen’s pain to a manageable level and reestablish a level of normal motor function. Ellen has not needed to rely upon a wheelchair for years. Once a master swimmer, she has adapted her stroke, allowing her to swim for 40 minutes, 4 times per week. She also walks over one mile twice per week.
The one issue which, in my view, made the best contribution to the effectiveness of Ellen’s treatment was the introduction of cannabis as a drugs to help her in managing her pain. For Ellen, a every day dose of cannabis night oil was directly related to her newfound capability to administer her pain.
Following her initial diagnosis, Ellen began seeing a pain specialist. One physical symptom experienced by lots of those living with EDS is having body chemistry that lacks the capability to effectively metabolize many prescribed and over-the-counter medications. This will effectively rule out the overwhelming majority of accessible pain reduction remedies. After reviewing Ellen’s medical history documenting her severe reactions to almost all the pain treatments her doctor had to supply, her pain doctor suggested she explore the opportunity of utilizing medical cannabis. Fortunately, medical cannabis had just turn into legal in Rhode Island, where we live. Ellen began taking a every day dose of cannabis night oil immediately following the doctor’s advice.
For years, EDS had deprived Ellen of healthy, restorative sleep. From my perspective as Ellen’s caregiver, medical cannabis was directly answerable for Ellen’s renewed capability in spite of everything that point to realize deep, healthy, restorative sleep. I remain convinced to at the present time that the resumption of healthy sleep cycles serves to boost the efficacy of all points of my wife’s treatment plan. In Ellen’s situation, I feel that chronic sleep deprivation was inextricably linked to what I might discuss with as a pernicious, diabolical synthesis. I feel that in Ellen’s case, chronic sleep deprivation, together with elevated stress and anxiety levels, and most critically higher levels of chronic pain were directly connected.
I’m also convinced that for a lot of chronic pain patients, like my wife, medical cannabis can result in a restoration of a patient’s capability to comprehend healthy, restorative sleep. I feel that the shortage of therapeutic sleep, pain, and stress all have a direct correlation and that without addressing the sleep issue, progress in a person’s treatment will remain incredibly difficult and, in lots of cases, elusive.
In Ellen’s situation, medical cannabis proved to be a godsend. Cannabis didn’t eradicate Ellen’s pain, but it surely did allow her to administer her pain, which I’m convinced led to an increased level of effectiveness in all points of her treatment. In our home, we frequently discuss with cannabis oil as a magic elixir. From my perspective, medical cannabis was not only critical within the technique of improving Ellen’s prospects of higher health outcomes, but I feel that the positive changes in my wife’s health, once she began using medical cannabis, would also serve to revive our capability as a pair to imagine in the opportunity of resuming a more normal life to incorporate all the joys and sorrows embedded within the human experience.
Unfortunately, for those living with chronic pain who may select to contemplate cannabis as a possible treatment option, geography dictates accessibility. While a majority of states have adopted laws and policies allowing for the medical use of cannabis, a good variety of states have did not take any steps to permit legal access to this natural, plant-based medicine. This failure to act on the part of those states is each tragic and cruel. To deprive chronically ailing patients of any possible source of relief from their physical pain and emotional suffering is, in my view, unethical and maybe even immoral.
Those afflicted with long-term disabling conditions and medical conditions that cause chronic pain are amongst probably the most vulnerable of our fellow residents. These individuals need and deserve all of the support society can provide. These patients include members of each race, religion, and economic stratum of society. Everyone knows them; a few of us know them intimately. These individuals shouldn’t be denied any opportunity of their quest to enhance their long-term health outlook. Pain relief is a right, not a privilege.