3 posts tagged “Autonomic neuropathy”

Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one

Posted July 10th, 2017 by

Insurance series part one


Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that  prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she says can be like “trying to find a needle in a haystack.” Kimberly tells the story of how eight of her doctors became out-of-network overnight when her insurance changed, and how she navigated the system to replace those providers and get her care team back on track. Here’s her story…

Last fall we knew that there was a strong possibility that there was going to be a change in our employer based insurance, and that turned out to be true. A decision had been made and we received final word ten days prior to the switch. Along with the letter, there was a form that you could fill out if you had a complex case, or needed assistance setting up care. As a patient who happened to have a very complex case, as well as someone who was going to be utilizing resources galore, this form was what I needed. This piece of paper was my golden ticket. It was filled out almost as soon as the envelope was ripped open. I also attached two more pages with everything detailed, so there was nothing left for the imagination. Medications, treatment dates, specialists, and conditions all were listed, so that they had as much information as possible to start the process.

From in-network to out

We were currently with an HMO Provider in the same town, but our new HMO was not part of the same network. After frantically searching to see if ANY of my providers were going to be able to continue caring for me, I sat in shock.


“Eight of the members of my care team (doctors and physician assistants), were now going to be considered out of network.”


I was feeling a little bit like Cinderella, with a midnight curfew and had to work on setting up a new care team FAST! Luckily, I have an amazing primary care physician (PCP), who was still considered in-network, as well as my local hospital. I knew that I would need referrals to get established with new specialists and my PCP initiated the referral process for multiple specialties. Those took a backseat for the moment, as I had a more immediate need. My monthly infusion for my immunodeficiency was scheduled within a week of our plan change, and I knew that I didn’t even have an immunologist anymore, let alone orders for the infusions! Calling back on a whim one more time to ask for a transitional case manager turned out to be the piece of luck that I needed.

A disconnect in healthcare

The transitional case manager was only responsible for making sure that the first two weeks of my care were set up correctly. Prior to the end of the first two weeks of care, I called and asked to be assigned a complex case manager to move forward with. After speaking to triage, I received a phone call that made me really reflect on the multitude of reasons that led people to enter healthcare. After about five minutes on the phone with a nurse for the case management portion, I was asked two questions

Her: “Can you get to doctor appointments?”

Me: “Yes, I find rides all the time because I can’t drive more than 10 miles.”

Her: “Do you need help meeting goals?”

Me: “If by goals you mean symptom control, yes, but if it’s checking blood pressures and reporting back to my physician, then no.”

Then came the moment when I almost completely came unglued. The nurse, who was doing her job, calmly said, “You don’t meet the criteria for complex case management.”


My reply was as polite as I could muster at that point, “I just lost eight doctors, so I don’t have any appointments to get to, how about some help with that?”


I was told that it wasn’t part of their job and then the phone line went dead. Sitting back in shock all I could think of, was what if I was sitting at her desk? Perhaps some customer relation training should be part of the continuing education. I got over the incident as quickly as possible and then called back to triage for case management. We discussed what had transpired and then I was assigned a social worker, who has made the entire transition much easier. Neurology was going to be the next hurdle. I was due for a three-month checkup for my autonomic dysfunction and several other procedures.

These were due the beginning of December and I had given ample warning that if we did not stay on the same schedule for procedures, that I would end up in the hospital with a migraine. Let’s just say that my warning became reality. They believe me now.

Rebuilding a care team

We also found out that nobody in-network treats patients with autonomic issues. So, we were given the choice of two facilities to go to. We picked one and literally the beginning of May was when we had our first neuro visit. This was six months later than my previously scheduled one was supposed to occur.

We have been with this insurance provider for eight months now and still aren’t completely settled. Sometimes I have days that it is a full-time job just to return phone calls or update doctors. Plus, I have a case manager with insurance and a social worker within the facility. Remember the form that was mentioned at the beginning? Well, it got lost; good thing I kept a copy. It has been the guide for my care as we have been moving forward.  If I didn’t have case management background, I would be lost. I would have given up and my disease would have complete control. I never have given up easily and I don’t intend to now. Every day is a new one, full of opportunity, but this has been by far one of the largest challenges that I have faced in this entire illness.

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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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