Some of the Highlights of My MS Library

The library and book store helped me immensely in my journey to adjust to living well with Multiple Sclerosis. Prior to purging my library, I took stock and reminisced how each book provided a portal to another way of seeing things.

I've read a lot of books about Multiple Sclerosis. I literally read every book I could find at the local library – no exaggeration - and then every book I could find and afford at the bookstore.  There were memoirs by people with MS, how to books written by people living well with MS, and other how to books by doctors suggesting they have the answer to MS. I've soaked up novels with fictional characters with MS, and I've devoured books about people with other health issues to see how they deal with issues often found in MS.  

Take this unpredictable disease that is completely different for each person, and find a book that will describe to me what I should expect. Explain why I feel the way I do, and tell me what my future holds. Tell me what I need to do live my best.  Easy.

I gleaned something from everything I read even if it showed me things that wouldn’t work for me. There were single phrases, lessons, and relatable events in books that made the time spent reading them worthwhile. Other books provided perspective and suggestions throughout that helped me find strength and motivation to take on my own challenges. 

Just a few of the books that touched me follow:

29 Gifts by Cami Walker – I LOVED this book and gave it to everyone in my family for Christmas one year.  It was after reading this book that my perspective really shifted about my value in the world. Through practicing daily giving, I learned the wide range of gifts I’m able to provide that don’t depend on money, my job, or my mobility. It convinced me that even if MS takes all it can from me; I’ll still have value and an ability to contribute to society. See the rest of my post, Fear, Gratitude & Hope Through Giving.

Michael J. Fox’s books, “Lucky Man,” “Always Looking Up: The Adventures of an Incurable Optimist,” and “A Funny Thing Happened on the Way to the Future…” inspired me greatly.  I felt a kinship to Michael’s attitude and approach to life living with Parkinson's Disease.  They were easy reading, relatable and not intimidating, and they lightened the mood on really hard life situations.

“Crazy Sexy Cancer”documentary by Kris Carr was one of my early favorites and led me to read three of the books she wrote soon after the documentary came out.  It was early after my diagnosis I saw an interview with her while I was home recovering from an exacerbation and steroid treatment. I tried her dietary suggestions, and I incorporated juicing and drinking smoothies into my diet.  While eating vegan didn’t make me feel better, it was a good experience and worth trying. I still follow some of her recommendations, I admire her positive attitude and drive, and I respect her immensely.

“MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis,” by Allison Shadday was given to me by my diagnosing neurologist. She said that a grant had been provided to gift the book to all newly diagnosed MS patients.  I poured through that book and the National MS Society website in my first month.  While the website was informative, it was overwhelming.  The book was terrific at keeping things at a level I could follow. 

Dr Terry Wahls' TedTalk turned me into a full-on Wahl’s Protocol following advocate. I don’t like that people suggest she reversed her MS, but I’ve heard she didn’t make that claim. Her health suggestions have improved her health tremendously – from declining health and in a wheelchair to being fairly active again – but my opinion is such is the nature of MS. That said, I think she has a lot to offer.  I follow a lot of her dietary advice, but I’m still not including organ meat into my diet.  I tried for a while, but it didn’t stick as a habit.  I toy with the idea of adding it again, but it’s on my list and will be a priority when I’m able to take it on again.  Check out her books, “Minding My Mitochondria 2nd Edition: How I overcame secondary progressive multiple sclerosis (MS) and got out of my wheelchair. 2nd Edition,” and “The Wahl’s Protocol.”

I could go on and on, but this post would never end and likely get overwhelming.  These and many other books were a lifeline for me when the internet wasn’t the abundant resource for these issues like it is today.  I found over time that I was searching for people who knew what I was going through and could give advice.  While following their suggestions strictly hasn’t been the permanent path for me, I tried them and determined for myself if they worked for me.  Certain suggestions and moments they described thrilled me with their insight and compassion. These books kept me more evenly keeled than I would have been otherwise.  They gave me hope and motivation to keep going when things were rough.

Dealing with Insurance Denials: A Necessary Skill When Living With a Chronic Illness

Over the years I’ve appealed a lot of health insurance denials for different reasons.  I’ve dealt with getting denied for claims, denied for policy coverage, and denied for pre-approval for certain treatments. Each time I open the denial paperwork, I can literally feel my blood pressure go up. Now I have something to deal with on top of everything else.

I didn’t learn how to deal with these things in school. Yes, I learned to read, understand text and problem solve, but insurance paperwork is formal, in small print, and not always clear.  Getting denied creates an emotional response with financial consequences.  I see people shut down when they need to read legal paperwork, and I’m saddened when it costs them money they didn’t need to spend.  I’ve learned what to do by dealing with each denial one at a time. Thankfully so far, my experiences have been what I’d think of as the minor league level of insurance appeals where I was able to do them myself.

I’ve had to prove I’m not divorced or legally separated to continue coverage for my spouse. While we were in the process of getting divorced, I legally changed my name to my maiden name and gave them the judge’s order showing the name change.  My insurance company wanted proof I wasn’t divorced.  I was angry and completely stumped.  How do I prove I’m not divorced?  There’s not a judge’s document that shows a person is still married.  By talking to insurance representatives, they finally were able to tell me what kind of documents would satisfy them.  I had to provide them with our marriage certificate, my name change order (again), joint bank statements with the address they had for us, utility bills with both our names, and federal tax returns to show we were still filing as married. It took all of that plus a lot of effort on my part and time on theirs before they continued covering my spouse and re-processed his claims.

I had a provider that would bill the insurance provider and would receive no response EVERY time. We finally learned the routine. First, my provider would let me know the claim hadn't been processed for a long time. I would then call the insurance company to ask about it, and the person on the phone would tell me it was in process and should be paid within the next week.  While absurd and seemingly a tactic used to avoid paying, I accepted it as part of the process with that company and my provider. 

I’ve formally appealed my insurance company’s refusal to cover my disease modifying medication at a dosage of three days per week. I knew the daily dosage worked for me, but I couldn’t find seven different areas on my body to do injections each week without body tissue breaking down. I tried two other medications and lived with terrible side effects for over a year hoping they would subside without success. While appealing the insurance company’s denial, I lived without any disease modifying drug for six months.  It was stressful going without something that has been proven to slow progression of MS.  Not knowing if it would get approved or how long it would take compounded the anxiety the process caused me.  I wish it had occurred to me to search for online examples of appeal letters.  While mine was effective, it took me a while to write and was stressful worrying that it wouldn’t be successful.

I’ve had bills come through that have been denied because the provider billed the wrong insurance company. Just the most recent bill would have cost me $750 out of pocket if I hadn’t been paying attention.  It astounds me to think of all the money people are paying that they shouldn’t.  All because it looks like every step has been done and they’re told the remainder is their responsibility. 

I know people who think that yelling at the company helps. Personally, I think yelling at the customer service representative is a waste of time. That person didn’t create our insurance system and isn’t the one creating policy at the company causing your frustration.  I think the people answering phones are just following orders and trying to keep their job to support themselves and their family.  Letting them know you’re frustrated is useful. Yelling and not listening increases the amount of time it takes to figure out what the issue is and what will help. It adds to my stress level and makes my life harder.  Advocating for my care doesn’t need to feel like a battle.  By being friendly, I’ve had pleasant interactions with insurance representatives that have brightened my day.

What I think helps me and things I try to remember when navigating insurance appeals:

1. If you don’t understand the denial, call the insurance company and ask them to tell you what the reason was and what you need to do for them to approve or re-process the claim.
2.  Be pleasant to the person on the phone. If I’m upset, I’ll tell them, “I know this isn’t your fault. I’m really frustrated, so please bear with me.” I can hear the person on the phone relax, and it seems they’re more willing to help problem solve my issue.
3. Accept that often you’ll need to provide things repeatedly.  Sometimes it’ll be each time a claim is processed, others will be annually.
4. Maintain good records of medical bills and payments. See my blog post for tracking medical bills if you want tips or a system: Creating Some Order In The Medical Billing Chaos.  If you haven’t kept good records, just call your insurance company and your medical provider to figure out what the status is and what you can do now.
5. Open all medical bills or insurance statements when received to see what they say. It’s tempting to put bills and other mail in a pile for later, but that’s a habit that makes it easy to lose track of paper and time.  Waiting will only compound some issues and leave you with less time to resolve them.  If it says it’s covered, you’ll know how much you owe. This may shape decisions you make regarding purchases.  And sometimes it’s good news!
6. Keep copies of documents you've had to provide for an appeal with medical insurance files so that you know what was provided in the past. It will also be ready to send again when they repeatedly deny coverage for the same issue.  
7. If feeling the tendency to shut down, take a break.  A few minutes or days may be needed to be able to work on it again. Usually appeal deadlines I’ve seen are 180 days.  Know the timeline, and don’t wait until the end. Otherwise you’ll keep getting bills that can hang over you and cause anxiety.
8. Share your experience with friends or coworkers on dealing with medical appeals.  They often have experiences of their own with advice that may help you in your situation.  You may also be helping them be better prepared for dealing with their own insurance issues.
9. For writing appeal letters, look online for examples.  I searched for “prescription appeal letter,” and found many terrific examples to follow.  If you enter the specific name of the medication or device you’re trying to obtain with “appeal letter” you’ll find lots of tailored examples. If there isn’t one specific to your situation, use the others as a guide for how to convince your insurance company to approve it.
10. Remember you don’t always have to figure out everything on your own.  Look for your resources.  There are online suggestions from organizations about dealing with insurance.  Friends and family can often break down the issue to a level that’s manageable. If the stakes are really high, you may want to get professional assistance with your appeal.

Having a chronic condition that requires ongoing medical treatment is already frustrating and draining.  Learning how to navigate the insurance world and cultivating the patience needed to deal with it goes a long way. It can improve your medical care, reduce out of pocket expenses, and make life a lot easier than it might be otherwise.