Sunday, November 5, 2017

Being Grateful: Validate the Hardship and Strive for the Bronze

I used to think being positive meant focusing only on the good things in life.  I was really good at it too. A friend would say she’d had something bad happen, and I wouldn’t miss a beat to respond with how great it is that a worse outcome didn’t result.

I did it with myself too.  It seemed like if I let myself think about the difficult things, that it was being negative. That it could lead falling into a dark place of feeling bad and never climbing out.  I once had a counselor tell me after 9/11 that thinking about what happened doesn’t make you sad. What happened makes you sad. 

In that way, thinking about having Multiple Sclerosis doesn’t make me sad. My chronic illness and progressing MS symptoms make me sad.  Ignoring them doesn’t change the fact that I have both. We’re not limited to feeling one emotion at a time, and feeling sadness or frustration with one aspect of life doesn’t preclude feeling optimistic.  I’d argue that we need to feel one to appreciate the other. 

To feel genuine gratitude, I need to know it’s not mandatory to stuff my feelings and be happy every moment. I can’t ignore the tough parts of my life and only acknowledge the things that make me grateful. I can’t just write a list of unrelated things to be thankful for and stay sane. If I’m feeling sad or resentful, I need validation that it’s understandable to have those feelings. If I skip this step, I’m minimizing my frustration or implying I don’t have a reason to feel bad.   Once I sit with it, grieve for it, and assure myself I’m not weak or overreacting, I can then choose to focus on things that make me grateful. Sometimes it’s a quick shift, other times it’s a rough climb out of funk. Either way, it helps me come to a place of genuine appreciation in my life.

I think about it as winning a bronze medal. There’s an article in Scientific American, Why Bronze Medalists Are Happier Than Silver Winners, that I think we can use in our own lives to be happier.  People who compete and miss winning first place exhibit less happiness than people who don’t perform as well but still make it to the podium. Silver winners focus on the one person who did better.  Bronze winners compare their performance to all the people that tried and didn’t win anything. 

When I’m grateful, I’m recognizing my efforts and satisfaction. I’m not seeking perfection.  I’m looking at how amazing things already are.  I may acknowledge what could be better, but I’m recognizing all the ways it could be worse. Some people seem to have a point of pride of noticing the error or the flaw in things. They can make you feel like you’re never good enough. Try not to judge yourself harshly and add to feeling miserable. 

How we perceive our situation makes all the difference. When living with a progressively disabling chronic illness, things will stink and be sad and frustrating and feel too big to deal with at times. Sometimes the best I can do is know that how I feel right now won’t last forever.

The measure of success changes depending on my health.  If I can participate in a race and come in last, I’m grateful that given my circumstances I can do it at all. If I feel bad, I know that’s a part of the condition and grateful for the abilities I still have.  If I’m experiencing a permanent loss, I acknowledge that it’s sad to experience the loss and grateful for the time before the loss.

Strive to have a mindset of someone who’s coming in third.  Or someone who’s in last place and may or may not finish. You’re still doing it.

Tuesday, October 10, 2017

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.

Tuesday, October 3, 2017

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.

Sunday, September 10, 2017

The Best Next Turn: Changing Careers

Hands down one of the best changes Ive made since my Multiple Sclerosis diagnosis is changing careers.  While I still work in the same organization, I work in a completely different field.  Still, I draw upon skills and knowledge Ive gained from every job and experience Ive had in my life.

My career path has in no way been anything a career counselor would have designed to get to the job I have today. In college, I never would have believed that I would have my current job and love it. I also never would have imagined that at age 38 I would get diagnosed with Multiple Sclerosis and realize with hindsight that Id had MS since my early 20s.

The career I had previously was great for me. I was good at it, and it pushed me daily to grow and learn. I was rewarded with promotions, pay and increased responsibility.  I liked that I contributed to my community in a way that helped people through complicated requirements and paperwork. I liked being an expert in the field and making suggestions that would allow them to do their projects with the least hassle.  That job also required nonstop interaction with people in stressful situations, and it took a lot of energy physically. I would cram my weekend with rest to recharge enough to take on the next week.  Sometimes it worked, but more often it didnt. 
When I look at my employment path since the age of 16, I see that I consistently looked at what was available and with each choice made the best next turn. Ive been in industries with no perceived connection to each other. They include food service, retail, skilled labor, government, business, and office. Ive worked for myself and for others. I've worked at restaurants, a ski resort, a woodshop, a real estate office, an art gallery, in a building and planning permitting office, and a financial office.

A few years ago, someone approached me to assume their job when they retired. I hadn't even known that person was watching my work! The job had never occurred to me as remotely possible for me, but now I have it and love it. It took a lot of effort to make the transition, but the payoff was huge for my quality of life and the pay cut worth every penny.

In my new position, I still learn and grow every day, I contribute to my community, and I help people.  I also have a job with a mix of tasks that allow me to engage with people as well as have focused project work without interruption. The mix helps me accommodate my fatigue issues immensely.    

There are no guarantees for anyone for what tomorrow will look like. An accident or unknown health condition can take anyone out of the workforce at any time. I know my condition will progress, and someday I will need to change my employment or even stop working all together before Im ready to retire.  My job now works for me today, and I hope it works for me for some time. 

While having MS can make me feel vulnerable with my employment possibilities, I find Im happier when I dont prematurely limit myself.  When I come from a place of confidence in my abilities, I have hope and feel I can achieve anything I really want.

Career advice I would give myself and others is the same for starting a career as I think it is for winding one down.

1.    Build relationships.  Sometimes the people we work with see something in us that would be good for a job we never considered.
2.    Learn whenever possible. Pursue things that interest you even if they dont seem related to your job at the time.  I've found in my career that no time spent learning has been wasted even when I changed fields. Everyone brings a different set of skills, knowledge and background to every job. It all adds value even if the fields seem unrelated.
3.    Know your strengths, and build on them. Understand you have a weakness as a consequence of that strength.
4.    Know your weaknesses, and get so good at coping skills or accommodations that they dont hold you back.
5.    Be open to opportunities that surprise you and havent occurred to you. 
6.    Do a good job wherever you are on whatever youre doing.
7.    Be someone that people like working with and want to have around.  Im a firm believer that were all replaceable in our employment.  If we die tonight, someone else will eventually fill the job. People help and look out for others they like and respect.
8.    Never burn a bridge.  People you thought youd never see again sometimes boomerang into your life again. Forgive them and dont hold a grudge for poor behavior, but dont forget it either since theyve shown you who they are. (Ive had people treat me poorly given they didnt respect my position, and later I was their boss or someone they really needed to work with. Seeing them suddenly treat me much better is off-putting.)
9.    Know when a job isnt right for you anymore.  Focus on making the choice that feels right for you each point along the way. If you change later, it won't be failure. It'll just be a redirect.
10. Be wary of making decisions from a place of fear. It'll stifle your potential and happiness.

Ill never willingly leave a job without having my next life chapter ready to start.  As my body declines with age and illness, being the best me at each point will undoubtedly lead me to see the best next turn.

Sunday, July 30, 2017

Wearing the Pretty Shoes: Part II

With only one exception, I’ve converted all of my shoes to accommodate my unsteady feet. Every time I opened my closet, I’d see shoes I loved but would be risky to wear.  I realized their presence in my wardrobe brought out feelings of sadness, and I decided it was time to let them go.  

Over a period of months, I’ve noticed when my feet buckle and would critique my shoes to see what it is about them that gives less support.  Shoes that I would have thought would be fine since they were low heeled and comfortable still weren’t working for me.  I’ve browsed shoes online analyzing what attributes I need to stay steady on my feet.

For now, I’m able to wear heels so long as they have a block heel.  They have more surface area connecting with the ground. Those that don’t taper support my feet side-to-side.

Given I still want to wear shoes I like and express my style, I took my time choosing replacements for my existing shoe wardrobe.  I wear a lot of skirts and dresses for work, so my shoes are often visible.  While some block heel shoes can look frumpy, others are stylish and chic.  The photos below show shoes I’ve purged on the left and shoes I’ve purchased on the right. 
 

I think it’s important as I adjust to MS symptoms to reduce the feelings of loss and punishment as much as possible.  While shoes may seem like a frivolous area to put time and attention, it’s an expression of our individual style.  Encountering new limitations on how we dress can be the “one more thing” that MS takes from us and wears us down.  It can be a constant reminder of how we have to make do with disease progression.  Adapting and feeling like I’ve retained my ability to express myself through fashion is empowering. A bonus is that I still get compliments on my shoes, and when that happens I don’t feel like I’m having to just make do. Instead I feel stylish and confident, and that feels good.


Sunday, July 23, 2017

You Look Good, You Must Be Doing Well!

I hear it whenever I see someone I haven’t seen in a while.  “You look good, you must be doing well!”

Thank you. Really. But I’m not really doing well. I’m doing everything I can think of to try to feel better.  Things like eating healthy, being active, getting sleep, socializing, and connecting with loved ones. I’m sitting in the sun for vitamin D, and it gives me a bit of color while sun bleaching my hair a bit.  All of these efforts make me look good. 

I’m researching my symptoms and doing the things suggested to slow my MS progression. I’m stretching, swimming and jogging.  People have assumed that because I’m able to be active that I’m doing well.  I'm active because it feels good, but I’m also active because I’m scared that my muscles will atrophy if I don’t. My muscles already hurt constantly, and all of my efforts aren’t enough to alleviate the pain or stop the jerky movements. My muscles are likely to atrophy over time in spite of my efforts, but I hope to slow the progression as much as I can. I’ve always strived to live a healthy lifestyle, but now it feels nonnegotiable.  It’s mandatory self-maintenance.  Whatever happens, at least I’ll know I did all I could.   

Someone recently told me that my prognosis was better than someone else’s because, “You have a good attitude, and at least you can control your MS somewhat.” I believe she meant well and was trying to assure herself that I’ll be fine. But it’s an uninformed assessment.  MS has no cure.  People with MS aren’t disabled because they didn’t do enough to stay healthy. There are a lot of theories and anecdotes for what helps, but nothing’s been proven to halt or cure the disease yet.  Each person’s disease progression is unknown and unpredictable. It’s really just the luck of the draw for how severely MS affects each person over time.

Thankfully I don’t look as bad as I feel. And it’s nice the things that help me combat my MS symptoms make me look better. So like Bill Murray says in Caddyshack, I got that going for me which is nice.