I have been quiet for almost two weeks. I find that sometimes I get completely consumed with the daily living of Dysautonomia. We go from doctor to doctor, have one test after another, pick up our prescriptions, not to mention that the mere thought of doing housework, showering, or even eating a meal can be so exhausting to us mentally and physically. In order for me to cope, sometimes means that I have to take a step back, take a deep breath, pause and then release. This is my way of coping. There are times when I need more then a single day or week to regroup and go forward in my life. It is a choice that we make whether we like it or not. It is our way of survival. This is often very difficult to explain to our family and friends who do not have Dysautonomia. One would truly have to live with this disorder to fully understand what it is like for us to get through a single day. Our silence becomes an issue for others. We are not excluding them or avoiding them, we are merely trying to cope with what might be a difficult day, week or month. This is how we have learned to survive with Dysautonomia. It is frustrating when we are misunderstood. We've been down that road one to many times before with medical professionals. Deep inside we pine for our well self. We never stop grieving from the loss of good health. We find ways to cope, rediscover things about ourselves and reinvent how we live our lives, not because we want to....because we have to. Having this disorder was not a choice, however, we do sometimes need to make choices that others find difficult to understand. So, if being silent for a week or so is something that we need to do to get through a rough patch then so be it. Friends and family members...please don't take our silence as avoidance. We do love and appreciate you, we sometimes just have to do what is best for us at the moment.
Having a chronic illness is a 24/7 job. We can't take breaks when we want to, our bodies are constantly working overtime and we rarely get a vacation from this. Often times we don't have a co-worker (physician) who understands what it is like for us to perform the smallest task. We work very hard just to get through a single day. The bottom line...if we COULD, we WOULD.
Now, back to work!!!!!
Peace to all~
Sunday, February 5, 2012
It's Superbowl Sunday. A day where many people gather to eat, drink and enjoy the biggest game in professional football. It is also the biggest day for advertisement. Many companies paying millions for a prime spot during the game to air their commercials. Millions and millions of dollars for a 1-2 minute spot. Many commercials are talked about the next day. Which one they liked best, which one will be remembered and so on. Now imagine just for a moment what could be done with all that advertising money if it were to used for research for Dysautonomia and it's related conditions. The NIH would be busy for a very, very long time. How many physicians would be able to perform studies. Autonomic clinics could be opened.....unfortunately, this is just a fairy tale to those of us who struggle with a disorder that is barely spoken of and one that certainly is not at the forefront for research funding. It's a very sad reality. Throughout history there have been countless people with disorders/diseases who were sitting right where we are sitting today. Feeling hopeless. Many not able to find a doctor to properly diagnose them, let alone offer a treatment plan. It is often the patient that educates the physician about their disorder. How many physicians say "wow, this is something that we really need to understand and educate our peers about" very few. More often then not we hear 'I have never heard of this' or 'wow, this is way more then I can handle, I doubt that I will be able to help you,' the replies go on and on. How many patients will get rejected this year by a physician? How many will be told that it is an anxiety disorder? How many will say that they do not know anyone who treats Dysautonomia? How many of us will leave yet another promising physician's office only to end up at the same place that we were in prior to the office visit? It's a sad scenario that plays in my head over and over again. Many of us are not able to work, go to college, have children, attend social gatherings, brush our teeth without sitting down, eat a meal without sweating profusely or becoming nauseated shortly thereafter? How many of us just want to stay in bed all day long because we are not just physically exhausted but also emotionally and mentally exhausted? It's exhausting just thinking about this. Yes, we have hit a brick wall. We lack the ability to knock it down. So, we have to learn to go around it or climb over it. It will be a very difficult task and it will take a long time, years I am sure. Standing silent simply cannot be an option anymore. As exhausted as we are, we have to dig deep into our souls and say "I refuse this" we have to start a revolution. One thing that we can do this year is to call our newspapers and media. Let them know that we have a condition that is very rare and needs media exposure. We can contact experts that we hold in high regard and let them know that we plan on doing this. We can also ask our physicians who treat us who know very little about Dysautonomia if they would be willing to be interviewed to express the need for medical understanding of our disorders. Ask them to take part by speaking to reporters and journalists. Sure, there will be the problem of sensationalism but silence is much worse. We can make this a starting point. So many of us have FB pages, groups, websites....we can send along messages to these people and groups. Ask them to join our crusade. Small media coverage can be a venue to a larger media audience. Think about this. Our voices have to have a starting place. Let's start the planning process. I believe there is a week in April that is a National Dysautonomia Awareness week. I just need to make sure of that. I hope you will join my voice.
Peace, strength and hope to all~
Peace, strength and hope to all~
Thursday, February 2, 2012
When I started this blog a few days ago, I included some information about Dysautonomia. The information was from a website and was not written by me. I am not a physician and thought that it would be best to put information from a physician/website. Then it dawned on me last night that these were not my words, they were from someone that I did not know, was not familiar with and who might not like me sharing or posting their info without permission. That is a problem that I do not want to deal with. Personally, I feel that the people who should be teaching the physicians are the patients. Dysautonomia and it's related disorders are so poorly understood and who's to say that information from an outside source is even accurate???? So, that information has been removed. My goal for this blog is to let it become the catalyst to empower the patient AND to get the attention of medical professionals of all types. It is absolutely imperative that our VOICES be heard and therefore vital that we do the talking. Getting others to listen is going to be a challenge, but as the saying goes..'the squeaky wheel gets the grease.'
I need to be clear here, this blog is not to be replaced with proper medical care, advice, treatment etc and should not be used as such. This blog is to inform. So, I will use my voice to tell my story and welcome yours. I will ask physicians who are experts if I can use their abstracts. I see one of the best in the US and perhaps throughout the world, Dr. Blair Grubb, MD. If you are looking for accurate and solid information just google Dr. Grubb's name and you will find pages upon pages of abstracts and studies that he has done and that have been published in reputable medical journals. Dr. Grubb has also published many books. I am truly blessed to be under the care of this remarkably kind expert. Dr. Grubb is a cardiologist who specializes in Cardiac Electro Physiology at the University of Toledo,Ohio. Dr. Grubb has been studying and researching Dysautonomia and it's related disorders for many, many years. He is not only highly regarded by his patients, but also by his peers. I have never met a kinder soul then this wonderful man. Healing truly is his calling, and his most recent book "The Calling" proves just that.
In the days and weeks to come, I will begin to tell my story. How it has affected my life. You will also hear from my sister, Maggie, who will tell her story of what it is like being a sibling of an affected family member and how dysautonomia has changed her life and what she has learned that might help your family and friends understand.
The days of being silenced and not having a physician willing to listen must end. We must refuse the current medical hell that we have been living in and defy it by speaking up. The louder we speak, the greater the chance of being heard. We deserve proper medical care. We must insist that we get it. I do not fault all physician's for not understanding Dysautonomia, most only briefly brushed over it in medical school. So it is important to take note that we must not stop with our physician's, we have to reach the medical schools/universities and many more. We need to speak to residents and medical professionals of all types. If you say the word diabetes, breast cancer, AIDS, heart disease, cancer, medical professionals know right away what it means and the impact that it places in the world. That said, it was not that long ago when patients said the words lupus, primary immune deficiency, woman with heart disease, childhood type 2 diabetes and have a physician that understood the concept but did not know at that time the affect that these disorders would have in the US and throughout the world. With our disorders, many physicians have never even heard the word POTS, Dysautonomia, etc This makes it very challenging for us and for a well meaning physician. Then there is the flip side where we are told that we cannot be helped and are passed on to someone else, knowing that this cycle may continue.This creates a cascade of difficulties for us, affecting us physically, emotionally, mentally and often leaving us exhausted and feeling hopeless. This affects our personal lives, our professional lives, our social lives and more. Every disorder has a starting place. We must find ours and begin educating the world so that we can end the struggle of not being properly diagnosed, getting proper treatment and end the hopeless feelings that so many of us end up with. We need to have our family, friends, co-workers, etc understand these disorders. We have a lot of work to do. I have faith that together, we can and will accomplish this. Let our voices be heard. Peace and strength to all~
Wednesday, February 1, 2012
My vision for this blog is to give a Voice to Dysautonomia. To offer encouragement and hope to those who are newly diagnosed. To be able to take a stand and say "LISTEN TO ME." We have been sitting in silence far to long. Having a disorder that is so poorly understood is very difficult, having a disorder where no one is listening is unacceptable. Whether it be our physician's, our families, friends, co-workers etc....we need and have to be heard. We need to be taken seriously. We need to stop the labeling, misdiagnosing and assumptions that are so prevalent in our daily lives. Throughout history we have witnessed change by individuals who refused to accept the conditions in which they were living. Some of the most significant like Rosa Parks, Mother's Against Drunk Driving, Breast Cancer Awareness, HIV-AIDS awareness, Bill W, a struggling alcoholic who created a place for people to go where they would be heard without having to give their full identity. These organizations and examples all had a starting place. It is my sincere hope, that this blog will be the beginning of a starting place to help create a movement that will give patients the courage and the strength to speak up and speak out. Something that will become larger then a blog...a movement that will help create an even larger movement so that patients and patients of future generations will not have to go through the struggles of just being heard, being labeled as 'it's all in your head' or it's just anxiety. Getting properly diagnosed without having to travel across the county. Most importantly, to remove the isolation and loneliness that we struggle with by having a disorder that no one understands. Our bodies may not work well but our spirits remain alive. Let's keep them alive....let your voice be heard. Peace to all~