21 posts tagged “2016-2017 Team of Advisors”

5 tips for practicing self-care when your chronic illness is trying to take over

Posted August 14th, 2017 by

As a woman with bipolar disorder I and PTSD, I can pretty safely say that no two days are the same. There are days when the world is sunshine and roses; life is grand! Then there are days when the inside of my brain is trying to run the show without me, and it’s leaving a trail of destruction in its wake. There are floundering relationships, self-harm incidents, and half-hatched big plans laying strewn about, and I stand in the middle of it all, trying very hard not to let the illness win.

When I can really stand back and take stock of things, I find that self-care is paramount to my feeling better, or simply not getting worse. The following are some of my “go-to” self-care strategies.

1. Coloring. I know, I know. You’re already rolling your eyes at the screen, wondering what the heck I’m even talking about. But coloring has turned out to be a Zen activity in my life. My manias are not euphoric, but angry and aggressive, and I have found the act of coloring to bring me down in the moment.

It’s also extremely helpful with my anxiety and PTSD symptoms. We’re lucky that the adult coloring movement is upon us, so you can go anywhere and find books and pencils and markers for very little money.

2. Singing. This strategy is actually backed by science. More and more studies show that the act of singing (in the shower, in the car, on a stage) helps to bring a person calm and joy. Non-judgment is the key: find an album or song list you like (vinyl or online), throw it on, and start singing. It can be of any genre of music, any artist, any arrangement. All that matters is that you sing with abandon!

3. Massage. This is a once-in-awhile self-care treat for me. If I had the money, I’d get a massage every week. But I don’t, so I try to do this for myself once every few months. Massage has been used as a relaxation and health treatment for thousands of years, and there are myriad reasons why — but the bottom line is, it makes you feel good! I know many people with chronic illness of all kinds who make sure they put time aside for massage on a regular basis.

4. Journaling… outside. Anyone who’s been treated for a chronic illness for a while probably wants to scream every time someone says “Have you tried journaling?” No, I’ve never heard of this. What is it? Ugh.

All sarcasm aside, though, journaling in the outdoors when I can, or if I’m really not feeling well, has been incredibly helpful for me. The outdoors make you feel like you’re a part of something more, if you want to, or that you’re the only person in the world, if you want to. It’s really all about how you want to take the best care of yourself at that time.

Also, just like in coloring, the actual physical act of writing can help to bring calm and focus. Write a journal entry, write a thank you note to a friend, or write your grocery list for next week. Content matters less than the fact that you’re writing for yourself in the great outdoors. Put a lawn chair out in the backyard, find a nice park with lovely-smelling flowers, or float in your pool with a trusty notebook and pen! (If you’re from the Boston area like me, I’d suggest this activity be taken indoors December-March, unless you really like snow.)

5. An ingestible treat. Self-care is really about utilizing the five senses in an attempt to make you feel better, or at least to bring you to a more manageable spot until you can talk with a doctor or therapist. I have a short list of things that smell and taste good that I make myself (or ask for). Really good coffee or a chai latte are at the top of the list. Being able to hold a warm cup, smell something wonderful, and then take time to taste that wonderful thing involves three senses in a matter of seconds.

These are just a few tools that anyone can use to help make things a little better in the moment, or to be consistently good to oneself. Sometimes one tool on its own is enough, sometimes a few need to be combined. I have a little list on my refrigerator so that when things get bad, I have it in front of me and can start caring for myself.

What’s on your list? How might you practice self-care today?

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Thousands of members are sharing what helps them manage their mental health and other conditions – from coloring and journaling and to massage and outdoor time. Join today to learn more about self-care and treatments!

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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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