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reannamathis

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  1. Technology is bringing chronic pain and chronic illness patients together, allowing us to participate in life in ways that we normally would not be able to. I volunteer with a non-profit as the Co-Editor of a blog, so I get to see first hand how technology is bringing patients together all over the world. Technology is not only making things more convenient but also creating a sense of family and comradery. It is helping to combat the sense of loneliness and isolation we all have experienced. Resources are also something that are being made more available through the wonder of technology. Applications for creating art There are so many ways that technology can enrich the lives of people with disabilities. Currently, my new favorite toy is a painting application. Before I got sick, I loved to paint and make art. Today, I have to weigh the cost to my health inherent in the traditional process of painting. My health is usually the one to win that analysis. However, using the painting app there is no cleanup, and I can do it from my bed on my tablet. This is as close to painting as I can get, and if you have a stylus, it can make the art even more rich in detail. There are many different apps out there, some free and some a nominal cost, but for an artist who lost the ability to create, it is priceless. Zoom, Skype, Facebook Messenger Video and similar programs and apps. Many of us know the loneliness and isolation that comes with being chronically sick. I often wonder how people with these conditions connected in a consistent and fulfilling way before our techno boom. I would say 90% of my interactions are through the marvels of technology. I have attended chronic pain support group gatherings via zoom. Zoom is a video conference chat app so you can see the faces of the people you are meeting with. There are times when I cannot get out of the house for my mental health therapy. In those instances we utilize zoom. That practice alone saves my sanity regularly. I find comfort in seeing the face of the person I am conversing with. It feels more personal and more like I am making a connection than a phone call does. Accessibility programs and speech to text Whatever form your disability manifests, most operating systems have accessibility options. My personal favorite is Talk to Text dictation. This is an essential tool for days when symptoms create physical barriers to typing and writing. For me, there are days when my fingers don't work correctly. Having the option to speak my thoughts and have them dictated, allows me to communicate more often with the people I care about. For people who are blind or vision impaired, another form of accessibility is found on most websites. Typed descriptions of images are included to allow access to those images via sound. For the deaf and hearing impaired, let’s not forget closed captioning, which is a feature on almost every new TV, computer and movies. Since 1990, when the Americans with Disabilities Act was signed, closed captioning has been required for instructional and educational videos. However, over the years it has become an accepted practice for many other types of media. More recently, programs have become available that can be operated by eye movements. These features are often utilized by ALS patients and people with paralysis. These types of programs allow patients who cannot communicate in any other way to interact. There are even art and music programs being introduced that are designed to operate with eye movements. Social Media By definition, social media is designed to bring people together and to connect us. It is one of my favorite tools in my toolbox. On almost every platform you can find a support group or community for whatever your disability is. It has had an overwhelmingly positive impact on the disability community. I have heard many people say that when they found “their tribe” they no longer felt alone in their battle. It can connect you with people all over the world who share your conditions. Also, social media has done wonderful things for awareness causes. Many illnesses, like dysautonomia and EDS, were virtually unknown by the general population. I have been able to use social media to educate family and friends and to share my day to day struggles. It also fosters resource sharing. When new research or studies are released, the news quickly spreads across social media. Through "following" platforms like Facebook or Twitter belonging to groups like DINET or other dysautonomia organizations, patients have access to feeds of information that they wouldn't have had 15 years ago. This gives patients the ability to better advocate for themselves with their medical team and to explore the latest trends in treatments. Of course, it is vital that care is taken to confirm the identity of the groups you follow and to be sure that you check all the information you see with medical professionals. Smartphone and tablet apps These days there is an app for EVERYTHING! Including symptom trackers and health apps. One that I like is backpack health, you can put in all of your information, and they give you a personal URL that can be printed on a medical ID bracelet. The Amazon Alexa is another device and app that is proving to be helpful for disabled people. Along with the Echo, you can call for help if you fall from any room within listening range of the device. You can activate the tablet or phone with Alexa’s name and give a command to call 911 or a family member for help. I have personally used it to call my husband after falling. There are also smart plugs that have apps to turn on and off electronics, saving you from the need to get up. There are also FitBit and apps like that that allow you to track health information. Being able to monitor heart rate and sleep cycles can be a useful tool in managing symptoms. There is no way I could list all of the ways smartphone apps make my life easier. I can do most everything I need to do online now. Grocery Shopping, medication renewals and "to do" list applications, have all made my life easier and save me precious spoons that I need so I can be present with the ones I love. We are even able to read books through apps in bed or have them read to us. When I am having a tough day and cannot read my daily meditations, I have them read to me through the app. I am virtually unstoppable as long as I have my phone! Virtual Walk and Races I have taken part in a Virtual 5K races for an organization that I volunteer with, and I loved the accomplishment. Runners have been competing in virtual races for a long time, but it recently has been a part of awareness campaigns to bring attention to illnesses where people cannot attend in person. You track your steps or distance in your wheelchair and register them with the event site that is doing the walk. Doing it at your own pace is a way we can reach our goals without compromising our health. I wrote an article for the mighty on the impact of these virtual races. You can find it here: https://themighty.com/2017/11/virtual-races-awareness-walks-dysautonomia/ I polled the community before finishing this article, and I was amazed at how much we rely on technology to make our lives easier and more fulfilling. Mobility devices are also making huge strides in technology and are utilized very often. So often, in fact, it may end up being a separate topic for a future article. Adjusting to a less active life is one of the hardest transitions most people with chronic illness need to make. It was a hard transition for me. Looking at the way I used to do things and finding easier ways, was a turning point for me. We found many solutions in using technology, and it has helped me live my best life. I still have a few things on my wishlist; such as a laundry folding machine (yes they make those!), a vacuum robot and a robot version of Dr. House. I hope after reading this, you also add some tech to your life! If you have some ways that technology has made your life easier or more enjoyable, I would love to hear about it. Please share with the community in the comments. Return to 02/2019 Table of Contents
  2. Technology is bringing chronic pain and chronic illness patients together, allowing us to participate in life in ways that we normally would not be able to. I volunteer with a non-profit as the Co-Editor of a blog, so I get to see first hand how technology is bringing patients together all over the world. Technology is not only making things more convenient but also creating a sense of family and comradery. It is helping to combat the sense of loneliness and isolation we all have experienced. Resources are also something that are being made more available through the wonder of technology. Applications for creating art There are so many ways that technology can enrich the lives of people with disabilities. Currently, my new favorite toy is a painting application. Before I got sick, I loved to paint and make art. Today, I have to weigh the cost to my health inherent in the traditional process of painting. My health is usually the one to win that analysis. However, using the painting app there is no cleanup, and I can do it from my bed on my tablet. This is as close to painting as I can get, and if you have a stylus, it can make the art even more rich in detail. There are many different apps out there, some free and some a nominal cost, but for an artist who lost the ability to create, it is priceless. Zoom, Skype, Facebook Messenger Video and similar programs and apps. Many of us know the loneliness and isolation that comes with being chronically sick. I often wonder how people with these conditions connected in a consistent and fulfilling way before our techno boom. I would say 90% of my interactions are through the marvels of technology. I have attended chronic pain support group gatherings via zoom. Zoom is a video conference chat app so you can see the faces of the people you are meeting with. There are times when I cannot get out of the house for my mental health therapy. In those instances we utilize zoom. That practice alone saves my sanity regularly. I find comfort in seeing the face of the person I am conversing with. It feels more personal and more like I am making a connection than a phone call does. Accessibility programs and speech to text Whatever form your disability manifests, most operating systems have accessibility options. My personal favorite is Talk to Text dictation. This is an essential tool for days when symptoms create physical barriers to typing and writing. For me, there are days when my fingers don't work correctly. Having the option to speak my thoughts and have them dictated, allows me to communicate more often with the people I care about. For people who are blind or vision impaired, another form of accessibility is found on most websites. Typed descriptions of images are included to allow access to those images via sound. For the deaf and hearing impaired, let’s not forget closed captioning, which is a feature on almost every new TV, computer and movies. Since 1990, when the Americans with Disabilities Act was signed, closed captioning has been required for instructional and educational videos. However, over the years it has become an accepted practice for many other types of media. More recently, programs have become available that can be operated by eye movements. These features are often utilized by ALS patients and people with paralysis. These types of programs allow patients who cannot communicate in any other way to interact. There are even art and music programs being introduced that are designed to operate with eye movements. Social Media By definition, social media is designed to bring people together and to connect us. It is one of my favorite tools in my toolbox. On almost every platform you can find a support group or community for whatever your disability is. It has had an overwhelmingly positive impact on the disability community. I have heard many people say that when they found “their tribe” they no longer felt alone in their battle. It can connect you with people all over the world who share your conditions. Also, social media has done wonderful things for awareness causes. Many illnesses, like dysautonomia and EDS, were virtually unknown by the general population. I have been able to use social media to educate family and friends and to share my day to day struggles. It also fosters resource sharing. When new research or studies are released, the news quickly spreads across social media. Through "following" platforms like Facebook or Twitter belonging to groups like DINET or other dysautonomia organizations, patients have access to feeds of information that they wouldn't have had 15 years ago. This gives patients the ability to better advocate for themselves with their medical team and to explore the latest trends in treatments. Of course, it is vital that care is taken to confirm the identity of the groups you follow and to be sure that you check all the information you see with medical professionals. Smartphone and tablet apps These days there is an app for EVERYTHING! Including symptom trackers and health apps. One that I like is backpack health, you can put in all of your information, and they give you a personal URL that can be printed on a medical ID bracelet. The Amazon Alexa is another device and app that is proving to be helpful for disabled people. Along with the Echo, you can call for help if you fall from any room within listening range of the device. You can activate the tablet or phone with Alexa’s name and give a command to call 911 or a family member for help. I have personally used it to call my husband after falling. There are also smart plugs that have apps to turn on and off electronics, saving you from the need to get up. There are also FitBit and apps like that that allow you to track health information. Being able to monitor heart rate and sleep cycles can be a useful tool in managing symptoms. There is no way I could list all of the ways smartphone apps make my life easier. I can do most everything I need to do online now. Grocery Shopping, medication renewals and "to do" list applications, have all made my life easier and save me precious spoons that I need so I can be present with the ones I love. We are even able to read books through apps in bed or have them read to us. When I am having a tough day and cannot read my daily meditations, I have them read to me through the app. I am virtually unstoppable as long as I have my phone! Virtual Walk and Races I have taken part in a Virtual 5K races for an organization that I volunteer with, and I loved the accomplishment. Runners have been competing in virtual races for a long time, but it recently has been a part of awareness campaigns to bring attention to illnesses where people cannot attend in person. You track your steps or distance in your wheelchair and register them with the event site that is doing the walk. Doing it at your own pace is a way we can reach our goals without compromising our health. I wrote an article for the mighty on the impact of these virtual races. You can find it here: https://themighty.com/2017/11/virtual-races-awareness-walks-dysautonomia/ I polled the community before finishing this article, and I was amazed at how much we rely on technology to make our lives easier and more fulfilling. Mobility devices are also making huge strides in technology and are utilized very often. So often, in fact, it may end up being a separate topic for a future article. Adjusting to a less active life is one of the hardest transitions most people with chronic illness need to make. It was a hard transition for me. Looking at the way I used to do things and finding easier ways, was a turning point for me. We found many solutions in using technology, and it has helped me live my best life. I still have a few things on my wishlist; such as a laundry folding machine (yes they make those!), a vacuum robot and a robot version of Dr. House. I hope after reading this, you also add some tech to your life! If you have some ways that technology has made your life easier or more enjoyable, I would love to hear about it. Please share with the community in the comments. Return to 02/2019 Table of Contents
  3. If you are reading this, then you likely suffer with a chronic illness. Recently, I published an article on the treatment of patients who have 'difficult to diagnose' illnesses. I can only speak to my experience with Dysautonomia, Ehlers-Danlos Syndrome and Chiari Malformation; however, this article is applicable to many illnesses that are complicated and messy. Sadly, we can be treated poorly as we search for diagnosis and treatment. We are complicated, messy, mysterious and definitely not a quick fix. Does that mean we should get treated any less well than the easier patients? I would hope not. My previous article mentioned contacting a patient advocate and it received a great response and prompted many questions. So, here is my follow-up. Hope it helps answer your questions. First, I hope you never need this information. But if you do need an advocate, then perhaps you have had a negative experience with a medical professional/system. The more doctors you need to see, the more likely it is to happen. Secondly, you are not alone in this. There are many of us that have had to reach down deep and stand up for our healthcare. Living with Dysautonomia, with an average diagnosis rate of 5 years and 11 months, has given us plenty of chances to do so. There are two types of patient advocates. One is a professional patient advocate who typically works for a hospital system or physician's office, and the other can be one of your choosing - such as a family member, friend or someone you trust to speak on your behalf. We will be looking at both roles. When choosing someone close to you to assist you with medical issues, you may want to consider the following: Are they trustworthy? Are they well-spoken and assertive? Are they willing and able to fulfill the role you need them to? Are they able to decide quickly how they will help you in the event you cannot speak for yourself? For instance, as much as I love my husband, I would not choose him as my advocate. I believe he is too close to me to make well-informed and unemotional decisions. As I am writing this, I am thinking of who I would choose. For me, I might pick someone who shared some of the same conditions, and who I know is already knowledgeable about them. When deciding how you would want your personal advocate to assist you, it is a good idea to write it down and keep the document in a safe place. Make them aware of what hospitals you would choose, if you had a choice, what medications you are taking, past surgeries and whether you want them to accompany you to medical appointments. These are just a few examples. Your situation and needs will be very individual. However, taking your advocate to new medical appointments can be a good idea. It provides you with someone who can assist you in deciding if the physician is a good fit. Having someone with me for appointments has helped my poor memory on more than one occasion. Plus, if the appointment or hospital visit goes in an unsavory direction, you have a witness, and it is not just your word alone. Now, on to professional patient advocates. They can also be called patient liaisons, representatives, case worker or any rendition of these. Usually though, if you ask for a patient advocate, you will be understood. The following quote is from study.com in an article titled “What is a patient advocate,” detailing the role for students who may want to enter this field of work. This next point is crucial. If you feel you have been given substandard care, contact someone! Calling the main hospital line or speaking with an office manager is a good place to start. Document everything, including the time and date, whom you spoke to and what was said. However, have reasonable expectations about the outcome. This is an extremely important reminder when advocating for yourself. Even if a doctor has treated you unfairly or given care that was less than stellar, do not expect him/her to be fired or reprimanded. You may not even find out the outcome. Some hospital systems have what they call “quality control panels” or “risk management committees” and when the complaint goes to those departments, they are not always required to disclose the outcome. They are only required to disclose that it has been reported and sent. Regardless, you stood up for yourself and your care, and that is an important point to remember! You also have the right to request amendments to your medical record. For many of us with Dysautonomia, we get diagnosed with all sorts of crazy things. There are also times that these misdiagnoses can impede our current care. If you have the medical information to back up amending your records, you can speak with your patient advocate about doing so. I am in the process of doing that myself. What do you do if you feel your patient rights have been violated? This is beyond a rude and uncaring doctor. This may include discrimination, HIPPA violations or having your medical records withheld from you. We have all been offered the patient rights and responsibilities documentation when receiving medical care. I could wallpaper my house if I kept a copy every time it was handed to me. If you are confused or unsure as to what your rights are as a patient, take the time to read the HIPPA document. Being informed is a pillar of managing your own healthcare. If you feel your rights have been violated, you can submit a complaint to any State Medical Board. The American Medical Association has a list with the contact information for each State Medical Board. You also have the option of turning the complaint in to the Department of Health for your state. When you are writing out a complaint against a doctor or medical establishment, be brief and selective. It is important to clearly state what the issue is without being emotional. Coloring your words with emotion is completely understandable as this IS your life we are talking about! But it will not serve you well. Consider having your personal patient advocate assist you in writing and/or editing your complaint. State who or what you are complaining about and then the purpose of the letter. Briefly explain the issue that transpired and what you would like to see happen to resolve the problem. In the past, I have requested continuing education for one of my conditions. Finish by thanking them for their time, and sign, seal and deliver. A friend and an administrator in one of my support groups shared that she first gave the doctor’s office a copy of the complaint, in hopes of resolving it before turning it into the Board. This is most certainly an option, if you are comfortable with this tactic. If you chose to do this, taking your personal advocate with you might be a good idea. Also, keep triplicates of all letters and complaints submitted. Even if nothing comes of your complaint, it is documented and will hopefully help another patient with a similar complaint. If you have trouble discerning whether you should contact patient advocacy or the medical board, run it by a few well-versed fellow spoonies. Many of us have been in your shoes and know our way around the medical system. I hope you will never need this information; however, given the nature of chronic illness, you may. I urge you to stand up for your healthcare in a productive manner and choose the best path for your situation. *Utterback, S. (2017). What is a patient advocate? Retrieved from: http://study.com/academy/lesson/what-is-a-patient-advocate-definition-training.html Editor's note: The subject of patient advocates was raised in Reanna's article "The Scary Trend I See in our Healthcare System" published in our partner publication, The Mighty. Return to Newsletter Table of Contents - December 2017
  4. If you are reading this, then you likely suffer with a chronic illness. Recently, I published an article on the treatment of patients who have 'difficult to diagnose' illnesses. I can only speak to my experience with Dysautonomia, Ehlers-Danlos Syndrome and Chiari Malformation; however, this article is applicable to many illnesses that are complicated and messy. Sadly, we can be treated poorly as we search for diagnosis and treatment. We are complicated, messy, mysterious and definitely not a quick fix. Does that mean we should get treated any less well than the easier patients? I would hope not. My previous article mentioned contacting a patient advocate and it received a great response and prompted many questions. So, here is my follow-up. Hope it helps answer your questions. First, I hope you never need this information. But if you do need an advocate, then perhaps you have had a negative experience with a medical professional/system. The more doctors you need to see, the more likely it is to happen. Secondly, you are not alone in this. There are many of us that have had to reach down deep and stand up for our healthcare. Living with Dysautonomia, with an average diagnosis rate of 5 years and 11 months, has given us plenty of chances to do so. There are two types of patient advocates. One is a professional patient advocate who typically works for a hospital system or physician's office, and the other can be one of your choosing - such as a family member, friend or someone you trust to speak on your behalf. We will be looking at both roles. When choosing someone close to you to assist you with medical issues, you may want to consider the following: Are they trustworthy? Are they well-spoken and assertive? Are they willing and able to fulfill the role you need them to? Are they able to decide quickly how they will help you in the event you cannot speak for yourself? For instance, as much as I love my husband, I would not choose him as my advocate. I believe he is too close to me to make well-informed and unemotional decisions. As I am writing this, I am thinking of who I would choose. For me, I might pick someone who shared some of the same conditions, and who I know is already knowledgeable about them. When deciding how you would want your personal advocate to assist you, it is a good idea to write it down and keep the document in a safe place. Make them aware of what hospitals you would choose, if you had a choice, what medications you are taking, past surgeries and whether you want them to accompany you to medical appointments. These are just a few examples. Your situation and needs will be very individual. However, taking your advocate to new medical appointments can be a good idea. It provides you with someone who can assist you in deciding if the physician is a good fit. Having someone with me for appointments has helped my poor memory on more than one occasion. Plus, if the appointment or hospital visit goes in an unsavory direction, you have a witness, and it is not just your word alone. Now, on to professional patient advocates. They can also be called patient liaisons, representatives, case worker or any rendition of these. Usually though, if you ask for a patient advocate, you will be understood. The following quote is from study.com in an article titled “What is a patient advocate,” detailing the role for students who may want to enter this field of work. This next point is crucial. If you feel you have been given substandard care, contact someone! Calling the main hospital line or speaking with an office manager is a good place to start. Document everything, including the time and date, whom you spoke to and what was said. However, have reasonable expectations about the outcome. This is an extremely important reminder when advocating for yourself. Even if a doctor has treated you unfairly or given care that was less than stellar, do not expect him/her to be fired or reprimanded. You may not even find out the outcome. Some hospital systems have what they call “quality control panels” or “risk management committees” and when the complaint goes to those departments, they are not always required to disclose the outcome. They are only required to disclose that it has been reported and sent. Regardless, you stood up for yourself and your care, and that is an important point to remember! You also have the right to request amendments to your medical record. For many of us with Dysautonomia, we get diagnosed with all sorts of crazy things. There are also times that these misdiagnoses can impede our current care. If you have the medical information to back up amending your records, you can speak with your patient advocate about doing so. I am in the process of doing that myself. What do you do if you feel your patient rights have been violated? This is beyond a rude and uncaring doctor. This may include discrimination, HIPPA violations or having your medical records withheld from you. We have all been offered the patient rights and responsibilities documentation when receiving medical care. I could wallpaper my house if I kept a copy every time it was handed to me. If you are confused or unsure as to what your rights are as a patient, take the time to read the HIPPA document. Being informed is a pillar of managing your own healthcare. If you feel your rights have been violated, you can submit a complaint to any State Medical Board. The American Medical Association has a list with the contact information for each State Medical Board. You also have the option of turning the complaint in to the Department of Health for your state. When you are writing out a complaint against a doctor or medical establishment, be brief and selective. It is important to clearly state what the issue is without being emotional. Coloring your words with emotion is completely understandable as this IS your life we are talking about! But it will not serve you well. Consider having your personal patient advocate assist you in writing and/or editing your complaint. State who or what you are complaining about and then the purpose of the letter. Briefly explain the issue that transpired and what you would like to see happen to resolve the problem. In the past, I have requested continuing education for one of my conditions. Finish by thanking them for their time, and sign, seal and deliver. A friend and an administrator in one of my support groups shared that she first gave the doctor’s office a copy of the complaint, in hopes of resolving it before turning it into the Board. This is most certainly an option, if you are comfortable with this tactic. If you chose to do this, taking your personal advocate with you might be a good idea. Also, keep triplicates of all letters and complaints submitted. Even if nothing comes of your complaint, it is documented and will hopefully help another patient with a similar complaint. If you have trouble discerning whether you should contact patient advocacy or the medical board, run it by a few well-versed fellow spoonies. Many of us have been in your shoes and know our way around the medical system. I hope you will never need this information; however, given the nature of chronic illness, you may. I urge you to stand up for your healthcare in a productive manner and choose the best path for your situation. *Utterback, S. (2017). What is a patient advocate? Retrieved from: http://study.com/academy/lesson/what-is-a-patient-advocate-definition-training.html Editor's note: The subject of patient advocates was raised in Reanna's article "The Scary Trend I See in our Healthcare System" published in our partner publication, The Mighty. Return to Newsletter Table of Contents - December 2017
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