8 posts from July, 2017

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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#MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist

Posted July 6th, 2017 by

As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS.

#MoreThan MS

When I was in my 20s I was thrilled to work for a large publishing house in Manhattan. It was an exciting dream job but I was competing against other recent college graduates who were all jockeying for promotions. To meet the challenge, I needed to be quick on my feet and look polished. I arrived early each morning wearing a beautifully tailored business suit and high heels. I could taste that promotion.

But fate stepped in when I least expected it. My 2-inch heels gradually became unbearable to walk in and I started to struggle to maintain my balance. I finally lost the battle one day when my right shoe slipped off my foot without notice. The growing numbness in my legs and feet masked the loss of my shoe. It was time to see a doctor.

After a CAT Scan, spinal tap and MRI I was diagnosed with Multiple Sclerosis.

I am more than my diagnosis.

When I told my boyfriend I had an incurable, unpredictable disease with no medications to curb my symptoms I held my breath, waiting for him to say, “Goodbye. See you around. Have a nice life.” Instead I heard, “We’ll get through this together. A life without you is no life at all.” We were married two years later.

I am a wife and a fighter.

Four years passed when we learned the happy news that I was pregnant. After two devastating miscarriages, we were overjoyed. At the time, I was driving with hand controls and walked with a cane. I was anxious about being a good mother despite constant fatigue, numbness and weakness. Then something extraordinary happened. As my baby grew inside my belly my hormones gave me a second chance. I no longer needed the cane and hand controls, I felt boosts of energy and the numbness and weakness temporarily disappeared. When our healthy baby was born, I called him my sweet angel.

I am a loving mother to a beautiful, happy son.

My relapsing-remitting MS reared its ugly head in those early days of motherhood. I learned how to manage my daily symptoms of the returning fatigue and numbness. I’d nap when my son napped and prioritized what I needed to do over what I wanted to. When walking became difficult I took intravenous prednisone (steroids) whose side effects were troublesome.

Eventually disease-modifying medications were approved and after trying the first two, number three was the charm. If you were diagnosed in the Dark Ages of MS, prior to medications, having options was Nirvana. As the old jingle said, better living through chemistry.

I am grateful.

Years passed and our son was preparing for college. I began questioning my future, wondering how to create a new career for myself. I dug deep to find what my passions were but it didn’t take long to find. I always loved to write and to help people manage their MS journey. I decided to go back to school to earn a certificate in patient advocacy. Then I married my newly acquired skills to my skills as a writer. That’s when I created my blog, AnEmpoweredSpirit.com, as a resource for patients to read and learn from my story, and to offer the latest news and information about MS.

I am a patient advocate. I am a writer. I love paying it forward.

As my blog grew and became recognized as an award-winning resource I began receiving offers to write for MS and health-related websites. I now contribute to three, moderate discussions for one and am the official blogger for a large international consortium whose mission is to improve the lives of those with MS.

I am a blogger, contributor and moderator. I am an active listener.

My professional life impacts me in countless positive ways, something I never imagined. My readers touch my heart when they share their joys and sorrows. I am deeply honored to hear their stories. Going from a blank screen to a message that touches others is magical. Helping the community makes all my efforts worthwhile.

I am grateful for this shared journey.

I am deeply humbled by loyal followers and eternally grateful for the love and support I receive from family, friends, colleagues and the people I’ve come to know both on and offline. I look to the future to find more ways to actively use my voice to continue making a difference in people’s lives.

 

I am more than my MS.

I am a wife, mother, daughter, sister and friend.

I am a writer, speaker, moderator and advocate.

I advocate for animal rights and love our two beautiful cats.

I am obsessed with classic Hollywood films, the arts and culture.

I love music and swoon when I hear Frank Sinatra or Ella Fitzgerald.

I am a lover of books.

I feel at one with nature because it brings me inner peace and serenity.  

I love to hike and knit.

I love gentle yoga and practicing gratitude and mindfulness.

I am an optimist who always looks for silver linings.

 

 

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