A Tale of Advocacy...
This blog post has been in the developing stages for several years, and I thought it was time, to share it with our readers. These will be my thoughts on advocacy and while I feel so strongly about it.
I made a promise to my dying mother, to live my life and grab what I want. At the time, having no idea what that meant. I was losing my best friend, but wanted her to know, that I would be able to go on and honor her memory. Her passing was very hard and I still miss my mother every day, but that chance came along, to do something I had never done before. I became a true patient advocate.
I had always advocated for myself. I asked for a CT for my head issues, because I knew something was wrong. I never once thought, it would end up being a brain tumor. The medical community did not really back me up on that decision. In fact, I was told twice during a telephone conversation; "If we find nothing, we're done." Although I have forgiven that great injustice done to me, I have never forgotten it. My advice to you is, always value your instincts. We all have them. I knew deep down inside, that something was wrong.
I also advocated for my mother, when she became ill and had to go into a nursing home. It was decided by the other family members, that I would be making medical decisions for her, if the time came, when she no longer could. I also was the best person for this task, because I have worked in various avenues of the medical field for over 30 years. I knew where to go, when I needed assistance for my medical needs and it was no different for my mother.
My mother even did a bit of her own advocating. Case in point; she knew when to take her pills. She had hypothyroidism, as I do. They were bringing all of her pills at once to take. Now you know, that if you take a medication for hypothyroidism, you are to take it no less than 30 to 45 minutes before eating your breakfast. That means you take the rest of the medications after breakfast. She talked to the nurses about it and I also brought it up, as this was not an acceptable practice. I had a conversation with the nurse, as there would be many during that time. She told me she was pretty sharp. Darn right she was! She kept track of when she took her medications, so she knew. Needless to say, it never happened again.
I never really thought about it at the time, but I was indeed fighting for my mother. It was a natural thing to do. They took care of you, while you were growing up, now the roles were reversed. I never have been a mother, but I do know what it means to be an advocate.
That experience, was a stepping stone, for my becoming a true patient advocate, not just for myself, but for others as well.
On April 20, 2012, that chance finally was realized. I worked with Seth Ginsberg the Co-founder and President of the Global Healthy Living Foundation aka CreakyJoints, for which I had been a member for over 10 years. I was involved in 4 meetings during that day, along with a local TV and newspaper interview. It was all commemorating my 11th anniversary of taking a biologic. It was a day that I will never forget.
It hasn't stopped there. The following year on March 11, 2013, I worked with the Global Healthy Living Foundation aka CreakyJoints again on another important issue. I was ready, as I had done some prep work the prior year. I testified at our ND State Capitol regarding the biologic vs. biosimilar bill. Which was simply, when biosimilars come into play, that my doctor and I would be notified of the one that I would actually be receiving, in a reasonable amount of time. That bill did pass. We made a difference that day. I couldn't have done it without a member of the team.
Advocacy does take teamwork. I joined the 50-State Network in 2013. I was asked to help write the pledge. What an honor! Our work continues. Every month, advocates from all over the country, are involved in teleconference calls. We are given the tools to work with, as advocates to continue this fight. It's now become a much bigger one. All the roadblocks that a patient is faced with handling healthcare issues. It shouldn't have to be that difficult to navigate. Think of me as someone, who has your back. I may live in North Dakota, but I can fight for anyone anywhere!
I also do this as an advocate for the National Brain Tumor Society. I was introduced to this wonderful organization, after having had my craniotomy for my nonmalignant meningioma brain tumor. When I am asked to contact my state senators and congressman, I always include a personal message. I think that sharing your experiences and what you have gone through, goes a long way. I generally hear back, even if it was drafted up by a staff member. I know they read it, because they usually elude to what I shared.
In the past several years, I have become involved with the American Cancer Society/Cancer Action Network for North Dakota. I first reached out to the Global Healthy Living Foundation, who was able to put me in touch with our ND Grassroots Manager for the American Cancer Society/Cancer Action Network. I was then encouraged to contact my local senator, who I had welcomed, when she was elected. She sent me a nice reply and said if I ever needed anything, to feel free to contact her. This was it. It ended up passing.
This past February I was able to spend a day advocating for ND Cancer Lobby Day at the State Capitol. I finally got to meet not only the ND Grassroots Manager, but my local senator as well. It was a wonderful day of learning. I got to sit in on our House Legislative Session and see how that whole process works.
I also contact my ND representatives working for us in Washington, D.C. quite frequently on various issues regarding cancer. Cancer touched our family deeply, as I lost my beloved sister to colon cancer on June 6, 2003. I decided to join the American Cancer Society/Cancer Action Network for ND, as a way of honoring her. I am not able to attend most meetings, as I can no longer go on an airplane, due to my terrible bouts with vertigo and also my terrible sense of direction. Traveling alone, is not even an option.
I realize we cannot do everything, but I do believe we can all do something. Doing something of worth is so important to me. I am generally involved in 3 teleconference calls a month. Sometimes that involves a webinar. I am also involved with the CreakyJoints Patient Council. I joined as someone living with RA, but it has since expanded to other types of arthritis as well.
I think that dealing with mental health issues, while living with a chronic disease is paramount. I also lost a relative to suicide. I don't want this swept under the rug. It needs to be brought out. If you are struggling, you have nothing to be ashamed of. I struggle, and that is why I wanted it to be a part of our Patient Council guide with RA.
I am also involved with CreakyJoints Patients Partners in Research. I believe strongly in research and scientists. Being able to take a biologic was a big factor, with the TNF molecule being discovered by a scientist.
I also consider myself a walking medical mystery. I believe that my whole life of medical issues could easily be drawn like a road map. They are all connected, as far as I am concerned.
Writing is a big part of advocacy for me. I have now coauthored 2 books. One on brain injuries and the other on living with rheumatic diseases. Both of these projects were so meaningful to me. I got to share with the world, what I deal with, as well as all of the other writers. That is a big part of advocacy right there. You are helping others.
I continue to do all of these things, while working full-time and living with rheumatoid arthritis (RA). I keep fighting every day, even it that means taking time for myself by resting.
I am going to leave you with my motto when it comes to advocacy. "There is nothing more powerful than the patient's voice, or the years of experience behind it"
I hope this spurs you on, when it comes to advocating for others.
~Brenda~
I made a promise to my dying mother, to live my life and grab what I want. At the time, having no idea what that meant. I was losing my best friend, but wanted her to know, that I would be able to go on and honor her memory. Her passing was very hard and I still miss my mother every day, but that chance came along, to do something I had never done before. I became a true patient advocate.
I had always advocated for myself. I asked for a CT for my head issues, because I knew something was wrong. I never once thought, it would end up being a brain tumor. The medical community did not really back me up on that decision. In fact, I was told twice during a telephone conversation; "If we find nothing, we're done." Although I have forgiven that great injustice done to me, I have never forgotten it. My advice to you is, always value your instincts. We all have them. I knew deep down inside, that something was wrong.
I also advocated for my mother, when she became ill and had to go into a nursing home. It was decided by the other family members, that I would be making medical decisions for her, if the time came, when she no longer could. I also was the best person for this task, because I have worked in various avenues of the medical field for over 30 years. I knew where to go, when I needed assistance for my medical needs and it was no different for my mother.
My mother even did a bit of her own advocating. Case in point; she knew when to take her pills. She had hypothyroidism, as I do. They were bringing all of her pills at once to take. Now you know, that if you take a medication for hypothyroidism, you are to take it no less than 30 to 45 minutes before eating your breakfast. That means you take the rest of the medications after breakfast. She talked to the nurses about it and I also brought it up, as this was not an acceptable practice. I had a conversation with the nurse, as there would be many during that time. She told me she was pretty sharp. Darn right she was! She kept track of when she took her medications, so she knew. Needless to say, it never happened again.
I never really thought about it at the time, but I was indeed fighting for my mother. It was a natural thing to do. They took care of you, while you were growing up, now the roles were reversed. I never have been a mother, but I do know what it means to be an advocate.
That experience, was a stepping stone, for my becoming a true patient advocate, not just for myself, but for others as well.
On April 20, 2012, that chance finally was realized. I worked with Seth Ginsberg the Co-founder and President of the Global Healthy Living Foundation aka CreakyJoints, for which I had been a member for over 10 years. I was involved in 4 meetings during that day, along with a local TV and newspaper interview. It was all commemorating my 11th anniversary of taking a biologic. It was a day that I will never forget.
It hasn't stopped there. The following year on March 11, 2013, I worked with the Global Healthy Living Foundation aka CreakyJoints again on another important issue. I was ready, as I had done some prep work the prior year. I testified at our ND State Capitol regarding the biologic vs. biosimilar bill. Which was simply, when biosimilars come into play, that my doctor and I would be notified of the one that I would actually be receiving, in a reasonable amount of time. That bill did pass. We made a difference that day. I couldn't have done it without a member of the team.
Advocacy does take teamwork. I joined the 50-State Network in 2013. I was asked to help write the pledge. What an honor! Our work continues. Every month, advocates from all over the country, are involved in teleconference calls. We are given the tools to work with, as advocates to continue this fight. It's now become a much bigger one. All the roadblocks that a patient is faced with handling healthcare issues. It shouldn't have to be that difficult to navigate. Think of me as someone, who has your back. I may live in North Dakota, but I can fight for anyone anywhere!
I also do this as an advocate for the National Brain Tumor Society. I was introduced to this wonderful organization, after having had my craniotomy for my nonmalignant meningioma brain tumor. When I am asked to contact my state senators and congressman, I always include a personal message. I think that sharing your experiences and what you have gone through, goes a long way. I generally hear back, even if it was drafted up by a staff member. I know they read it, because they usually elude to what I shared.
In the past several years, I have become involved with the American Cancer Society/Cancer Action Network for North Dakota. I first reached out to the Global Healthy Living Foundation, who was able to put me in touch with our ND Grassroots Manager for the American Cancer Society/Cancer Action Network. I was then encouraged to contact my local senator, who I had welcomed, when she was elected. She sent me a nice reply and said if I ever needed anything, to feel free to contact her. This was it. It ended up passing.
This past February I was able to spend a day advocating for ND Cancer Lobby Day at the State Capitol. I finally got to meet not only the ND Grassroots Manager, but my local senator as well. It was a wonderful day of learning. I got to sit in on our House Legislative Session and see how that whole process works.
I also contact my ND representatives working for us in Washington, D.C. quite frequently on various issues regarding cancer. Cancer touched our family deeply, as I lost my beloved sister to colon cancer on June 6, 2003. I decided to join the American Cancer Society/Cancer Action Network for ND, as a way of honoring her. I am not able to attend most meetings, as I can no longer go on an airplane, due to my terrible bouts with vertigo and also my terrible sense of direction. Traveling alone, is not even an option.
I realize we cannot do everything, but I do believe we can all do something. Doing something of worth is so important to me. I am generally involved in 3 teleconference calls a month. Sometimes that involves a webinar. I am also involved with the CreakyJoints Patient Council. I joined as someone living with RA, but it has since expanded to other types of arthritis as well.
I think that dealing with mental health issues, while living with a chronic disease is paramount. I also lost a relative to suicide. I don't want this swept under the rug. It needs to be brought out. If you are struggling, you have nothing to be ashamed of. I struggle, and that is why I wanted it to be a part of our Patient Council guide with RA.
I am also involved with CreakyJoints Patients Partners in Research. I believe strongly in research and scientists. Being able to take a biologic was a big factor, with the TNF molecule being discovered by a scientist.
I also consider myself a walking medical mystery. I believe that my whole life of medical issues could easily be drawn like a road map. They are all connected, as far as I am concerned.
Writing is a big part of advocacy for me. I have now coauthored 2 books. One on brain injuries and the other on living with rheumatic diseases. Both of these projects were so meaningful to me. I got to share with the world, what I deal with, as well as all of the other writers. That is a big part of advocacy right there. You are helping others.
I continue to do all of these things, while working full-time and living with rheumatoid arthritis (RA). I keep fighting every day, even it that means taking time for myself by resting.
I am going to leave you with my motto when it comes to advocacy. "There is nothing more powerful than the patient's voice, or the years of experience behind it"
I hope this spurs you on, when it comes to advocating for others.
~Brenda~
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