2 posts tagged “Autonomic neuropathy”

Meet Kimberly from the PatientsLikeMe Team of Advisors

Posted December 8th, 2016 by

We’d like to introduce you to Kimberly (firefly84), another member of your 2016-2017 Team of Advisors. Kimberly lives with autonomic neuropathy and describes what it’s like to manage a condition that is at times invisible, how she tackles each day by taking “baby steps” and focusing on the moment at hand.

Before becoming ill, Kimberly worked as a registered nurse and discusses the challenging transition from “caregiver to the one needing care.” As someone who knows firsthand what it’s like on both sides of the patient/care team relationship, Kimberly shares why it’s important to her to help change the system and, in doing so, leave “a lasting impact that will benefit all generations to come.”

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Prior to getting ill, I was working as a Registered Nurse in all areas of the hospital and had recently started doing home health and hospice as well. Suddenly I went from caregiver to the one needing the care. It’s been hard giving up the control factor. Healthcare professionals in general make horrible patients because we think that we should dictate our care. To a certain extent that works, but it also doesn’t allow you to just be the patient. Instead of sitting back and letting people take care of me, I have continued to take on multiple roles; ones that I probably shouldn’t be, but ones that I don’t know how to let go of. There are days when having medical knowledge is wonderful and it has saved me doctor appointments by calling in and saying that we need to adjust medications. But then there are also days when I wish I didn’t know anything about medicine, because then this condition wouldn’t be quite as scary.

A portion of this condition is invisible, so there are some days that I look fairly healthy. The whole “ill patient” scene needs to change. We need to be seen as real people, with lives that are affected in every aspect. We have spouses, families, financial responsibilities, and we still want to contribute to society. We didn’t pick our conditions; our conditions picked us. This isn’t how any of us saw our lives unfolding. These are the cards we got dealt. Society needs to be more accepting of chronic illnesses and understanding that every day is a challenge.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Automatic…think of the things your body does automatically. Now take those things (blood pressure, heart rate, sweating, temperature regulation, digestion) and put them into a blender. What comes out the other side? A mess…that’s how I think of it. The “rest and digest” (parasympathetic) and the “fight or flight” (sympathetic) nervous systems no longer communicate with each other. Think of the adrenaline rush and pounding, racing feeling in your chest if you were in an accident…that is what happens to me if I’m in small group with mildly increased noise levels. My body has become incredibly hypersensitive and totally unpredictable. This means that my heart rate and blood pressures basically do whatever they want, whenever they want (high or low). I lost the ability to sweat on 90% of my body, so anything involving outdoors is out of the picture once it is above 65 degrees. My worst symptom that is the most visible to people around me is flushing. Think of how hot a sunburn gets…now think of having that heat and redness for 16-20 hours per day, every day. Many things trigger it (showering, washing my hands, walking by the stove, having the sun shine on me). The hardest thing is that none of my symptoms are predictable, so I always have to plan ahead for multiple scenarios. That’s me…the blender scenario!

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Take a deep breath. Focus on this moment, and this moment only. We can’t live in constant fear of what hasn’t happened yet. There are so many unknowns; do your research, find a support system. Hold tight to family and friends as they will be your rocks going forward. Always have one or two people that you can call when you’re having a bad day and cry your eyes out for no reason at all. Finally…baby steps; this is my mantra. Sometimes going one day at a time is too much. So you go one moment, one second, one minute, one hour, and eventually you will have gotten through the day…with BABY STEPS! As long as you can find one positive thing each day, you can get through anything. Sometimes it can be something as simple as the sky was blue today or maybe your pain improved for an hour. Don’t set big goals because if you don’t achieve them you feel like you have failed, but if you set small obtainable goals, then you have succeeded and most of all, you have survived.

What made you want to join the PatientsLikeMe Team of Advisors?

Navigating healthcare is like trying to find a needle in a haystack. You get told that you have an illness, hopefully get a referral to a specialist, maybe get an official diagnosis, and then you’re on your own. Nobody tells you how to deal with insurance companies, how to expedite prior authorizations for procedures or medications, how to establish a good rapport with your healthcare team, or where to find resources and advocates. You are taken to the edge of a cliff and then told good luck. At least that has been my experience with several of my health issues.

Having worked within the healthcare system has given me an enormous amount of knowledge regarding how to successfully navigate the twists and turns. I wanted to join the Team of Advisors because I get so angry when the healthcare system fails patients time after time. I want to help change that, because it isn’t fair to anybody. We really can change things, but it has to be one step at a time. Advocating for community members and anybody with a condition is a lot like organ donation. Yes, we’re doing this for everyone right now, but we are leaving a lasting impact that will benefit all generations to come. That’s my reason!



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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by


CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Katherine Bragg