ART CRED: @whos_grips
On this day, It has been a year-long journey in the making of this movement. One year has gone by so fast and so much forward progress has been made. Never underestimate the fire that burns deep withIn this girls heart for the betterment of humanity and the will to do what it takes to make this a success. The fire has been lit and contuse to burn.
As I reflect back, there are many of my symptoms that I had prior to official diagnosis that are no longer present. Ironic that once the “unknown” was then “known”, my physiological state could finally relax. Many of the symptoms I experienced pre-diagnosis resemble those of the flight or flight mechanism within our body. The functioning or should I say dysfunction of the autonomic nervous system. That system with controls our involuntary processes. Those processes that stimulate the fight or flight response or soothe that response (balance). I can recall waking up in the middle of the night in sheer panic, with a heart rate well over 160, feeling as if I was going to pass out, blood not circulating like it should and thoughts of terror and demise. Numbness throughout my body and the knowing that something terrible was taking place deep within. Very very similar to that of anxiety or unmanaged stress. And yes, the same systems within our body that elicit anxiety or are exacerbated by stress are of the autonomic nervous system. I firmly believe this is why it took and takes so many years for so many to be become diagnosed because the symptoms are the same. However, for years I knew. I knew this was not uncontrolled anxiety or relentless unmanaged stress. This is what has helped me become so intrigued and fascinated that our bodies know so much more than any diagnostic test, any scan, any doctors opinion…..our bodies know on a subconscious, physiological level within that something is not right in our bodies, we know it. On a cellular level ,which I believe elicits that same response as panic and anxiety to alert us….go get checked out. If the diagnosis does not fit….continue to fight. Become well equipped, for it is your body and it is only this vessel that knows best. We are phenomenal, incomprehensible beings on the ways in which we function, live and survive and what has gone amiss. I didn’t give up. And I found my answer. It wasn’t easy. It took years. It took countless doctors. It took convincing them that I was not looking on Google, rather reading peer reviewed journals and articles that proved that I had the hallmark symptoms being overlooked by so many. And there it was………finally, ten years later. And once diagnosed, my fight or flight response was at ease, Amazing. Truly amazing.
I will not defame those doctors that I had to seek out as the best in the field. However I will say that being from Houston, I sought out the best, the most knowledgeable in the field, the top doctors of the Houston Medical center and even still was turned away. Was given misdiagnosis after misdiagnosis. It is not worth my time to reach out and inform them that they were wrong and to please keep up with the latest research, to please study the latest research and take very seriously the average of 6-10 years of misdiagnoses it takes the majority to get diagnosed. As well as the emotional turmoil one does experience in the knowing something is wrong. Perhaps if this was taken into consideration, more investigation would be done on their part other than sending a patient, a human being away in pure despair as they know something is not right.
I do not recommend spending countless hours doing research on ones own as there is much information within the research both new and old, that is either current and legitimate or outdated and it can become highly, highly overwhelming. It is however the way in which I was able to discover what I had and ultimately have a doctors confirm what I had been saying for years was in fact correct. I have sought long term treatment due to the trauma that it caused me going years of not being believed and turned away. It has been a horrific journey. And as I always say, I am not a victim however a voice for those millions that have the exact same story that are not being heard.
I continue to be told by medical professionals, “we do not know the pathogenesis of these diseases.” This is unacceptable. And I continue to build upon this movement for the needs of the entire autoimmune community. There is hope beyond the medical clinics, my biggest heroes are those I have built solid relationships with at very reputable institutions who still continue to exhaust themselves attempting to figure out that pathogenesis of the more than 80 autoimmune diseases. I also am beginning to tailor this to somehow offer services as we become a 501c3 to those who suffer emotionally from the years of being turned away. This is all a learning curve. As I learn more and more how to take care of myself and the measures that I can to better my health, this is my new life’s work. And I do not see it as living in my diseases, as that is not living. I see it rather as doing what needs to be done for millions of people……all while having fun. I have begun planning for fundraisers that will be educational and very vulnerable in nature and at the same time incorporating things I and others enjoy: music, art, comedy, etc……..therefore it is a life mission that isn’t so fun however at the same time, I am engaged in self care. The best of both worlds.
Recently I met with a professor from the University of Houston who is making strides and breakthroughs in his work for ALL autoimmune diseases. Hands down the most humble man I have ever met. The technology that has been provided to him to do his work costs millions. He is dedicated to discovering the origin of autoimmunity. I also met with the phenomenal team focusing on lupus at University of Florida- Gainesville. Also, hands down several of the most humble women I have ever met. Brilliant individuals dedicated to betterment of humanity. There are not words that I could find to even thank them enough. Research requires 100s of thousands if not millions to continue their work………………This will get done.