Saturday, January 13, 2018

I Need To Up My Game: Prioritizing Needs


When I feel great, there’s no need to change what I’m doing.  Following new and improved advice may actually break the complex formula of nutrition, fitness, and lifestyle that keep me in good health. If I’m not feeling well, figuring out what I need and prioritizing it within the mix of all my other needs becomes an issue. 

We subconsciously prioritize and adjust our behavior to meet our needs all the time.  For me the demand to put effort into prioritizing needs comes when I don’t feel well.  I’m stressed, something hurts, or some part of me isn’t working as well as usual.  It could be one small thing that is snowballing into a big issue, or it could be a big issue that’s easy to identify yet overwhelming to fix.

This past year, my pain level increased to a level that was affecting sleep and causing debilitating discomfort.  I researched possible causes and tried stretching, massage, supplements and rest. It helped a little but not much.  I went to a massage therapist who worked the muscles, and it caused almost unbearable pain for days. Through my neurologist, I tried medication and was told I’d need to take it for a few weeks for the side effects to mellow out.  I gave it a good try, but I could see it wasn’t going to be a good long-term solution for me right now.  I obtained a referral for physical therapy, and there I had someone work with me to specifically design a fitness regimen that will address my nerve pain. She assessed my personal condition and through trial and error pinpointed the cause of the pain.  She helped me devise a mix of exercises that will increase my strength, improve my balance, and hopefully reduce the nerve pain I’m living with.

Each step of the way, I had to make my health a priority while still doing everything else my life requires.  While under her care, I dutifully did all the exercises she prescribed.  It was tough doing it all, and it wasn’t something that I could sustain.

When I think about doing everything the physical therapist advised, I get overwhelmed. I want to do it all, but it’s too much right now.  I anticipated this and specifically asked her what the minimum daily fitness activities would be so that I could start there.  This took being honest with myself and with her.  I had to be open to being judged negatively and accept I’m not going to be the model patient I’d love to be. 

I already have a minimum fitness routine I do every day and have been doing for years.  Seriously, I missed eight days two years ago and none last year.  I thought I was doing great, but it wasn’t enough to protect me from having problems develop.  So now I’m working on modifying my routine to deal with my changing body. I’m incorporating the minimum she gave me, and I have a long list of things to add when I’m ready.

I’m not doing everything she gave me, but I’ll get there.  And I like having the guidance for what to do when I’m ready to up my game. She may or may not approve of my approach, but I’m the one who knows me and lives with the consequences. 

It feels like slow change, but it’s not no change.  I’m in it for the long haul and doing what I can as I can. 

Sunday, December 17, 2017

Let’s Not Give Up On Each Other

This morning I had a sudden crying jag.  Watching the closing credits of Saturday Night Live, I see the cast ice skating. I haven’t ice skated in years. Initially I thought that would be a fun thing to do again. A beat later I realized that I probably wouldn’t be able to anymore.  MS progression has made my feet unreliable.  Sometimes when I’m walking in shoes that aren’t flats, my ankles turn in and my walking falters.  Occasionally it happens when I’m wearing flats.  Even when I focus on keeping my feet steady, they sometimes give out repeatedly.  Surely skating is harder given my progressing limitations.

I used to roller skate and roller blade.  Maybe I could try that.  And maybe it would be impossible for me to stay balanced.  I could try, but it would take a lot of effort to get the equipment. I anticipate extreme frustration if it’s not doable for me anymore.  But maybe I could if it was in the morning on a good day. 


This is grief. Utter sadness for loss.  I get that losing abilities comes with aging, but I see examples online of people who with dedication and effort maintain impressive abilities long into advanced age.  I put the work in, but I can see that I may not be able to halt or reverse the impact MS is having on my body.  And the changes will continue.

When I read or watch stories about people with MS – Annette Funicello, Richard Pryor, David Lander (Squiggy from Laverne & Shirley), and others who had an extremely rough time of it – it makes me think of something I heard about ballerinas a long time ago. I remember hearing that when a dancer is injured, they take her off the stage and a new ballerina takes her place. 

It seems like with extreme health issues, people get set aside. They’re given up on, disregarded and left behind. Try not to think about how bad it is for them.

People say, “If I ever get that way, I’d kill myself.”  Please.  No. Just no.  It breaks my heart, and I think you’re not giving it the thought you think you are.  You’re also implying that others won’t have value if they get that way.  Intentionally or not, you’re suggesting they should end their lives if they ever become disabled.

I worry that people will expect too much of me and judge me for my choices or for falling short.  I worry people will give up on me and dismiss me while I’m still able to contribute, achieve and succeed. Yes, I’m trying to have it both ways. I know people can’t read minds and that my invisible symptoms don’t accurately reveal my health status in each moment.  I try to be aware of how I’m doing and accurately answer people when they ask. 

In my life, I try to assure people that while my health could reach those levels that it isn’t there yet.  I hope people won’t give up on me, and I mentally prepare responses to people who may dismiss me in my career or otherwise.  But I’m really reminding myself that I can’t give up on me. 

For now, emotionally coping is among the hardest parts of dealing with my disease.  The moments that sneak up on me are the toughest.  I think I’m doing it as best as possible. But part of it requires feeling lousy, letting myself feel crummy, picking myself up and finding a path to feeling empowered.   

I know I’m not being dramatic about this. I’m being realistic about my potential future. When I was diagnosed in 2008, I read a statistic that the majority of people with MS will likely need assistance walking (with a cane, walker, crutches or wheelchair) within ten years of diagnosis.

According to the National Institute of Health, odds are improved since then. 
“Multiple sclerosis is seldom fatal and life expectancy is shortened by only a few months. Concerns about prognosis center primarily on the quality of life and prospects for disability. Most patients and physicians harbor an unfounded view of MS as a relentlessly progressive, inevitably disabling disease. The truth is that 15 years after the onset of MS, only about 20% of patients are bedridden or institutionalized. Another 20% may require a wheelchair, or use crutches, or a cane to ambulate, but fully 60% will be ambulatory without assistance and some will have little deficit at all. Perhaps as many as 1/3 of all patients with MS go through life without any persistent disability, and suffer only intermittent, transient episodes of symptoms.”

This means that "only" 40% will need assistance within 15 years.  It means 2/3 of all patients with MS do live with some persistent disability eventually.  I know my MRI scans, and my disease has more damage in my spinal cord than my brain. Yes, it’s great that my mind may not be as affected. Truly it is.  Sadly though, I’m more likely to have issues with walking and related symptoms.   

When I feel this way, I try to work out why I’m feeling sad, sit with it, and then find a related small success.  I’m not giving up on my body.  I’m going to keep trying, monitor how I’m doing, and adjust my goals and activities as I go.  I’ll keep doing what I’ve been doing. 

I know my coordination is faltering. I look fine, and I’m grateful for that.  I am capable, and I still do A LOT.  I’m thankful for what I can do.  I appreciate the activities my body will allow. I know that how I’m doing today may be the best it will ever be again.  I also know that with determination and diligence I may be able to improve my agility, balance and endurance.  I’ll only know for sure with time and effort.  Regardless, the outcome is not wholly within my control. 

With all of this running through my mind, I laced up my jogging shoes and headed out for a run.  I planned to see how I felt in the first mile and then decide how far I could go today.  I resolve the key is that I keep trying and enjoy every accomplishment.  If I can’t go far or fast today, maybe I will tomorrow. Today I managed well. I jogged a slower pace with a longer distance than usual.  It was tough but felt great.

Later I spent time with friends laughing and enjoying life. All things considered, life is pretty great.

Sunday, November 26, 2017

Enjoying the Holiday Season When Health is an Issue

There are reasons to stress all year long, but the added social events and holiday tasks in November and December consistently encourage us to overdo it. People expect things from us, and we place expectations on ourselves. 

Sometimes – or a lot of times – “just” getting to work, paying bills, keeping house, caring for others, and maintaining some modicum of basic health is an overwhelming goal.  Add the holiday season expectations, and those of us with MS can be vulnerable to increased symptoms. 

I firmly believe that these suggestions are good for anyone, those in perfect health and those with chronic illnesses.  It’s just that what may be optional for them is critical for us.  

Establish the minimum:  Decide what the absolute minimum is that you need to do to maintain your health and be happy this season.  Not being able to do everything we want to do is a daily harsh reality with MS, but being strategic about how we spend our time and energy can help alleviate the discouragement.

For holiday tasks, be very clear on what is needed and what is preferred.  Anything beyond what is necessary is a choice, not an obligation.  Sometimes just a shift in thinking can change how I feel from resentment to joy.  If I’m doing something expected and I’m coming from a place of resentment, I will suffer. When I’m gifting, I’ve decided this is something I’ve chosen to do and I’ll feel good doing it.  When it’s appreciated, it’s only an added bonus.   

Reduce the demands: Ask yourself the following:

  • How can I do this so that it lessens my burden?
  • Can someone help?
  • Does it need to be done at all?
  • Can it be done at a different level of effort?
  • Can I purchase it without compromising my finances?
  • When someone asks me to do something, I’ll ask them the questions above. I’ll ask myself: Would I enjoy it, and can I do it without overloading myself? If I’ll resent it, I better adjust my attitude or not do it.  

Organize and plan ahead: Don’t expect to remember everything without any extra effort.  I keep a list of holiday season tasks that I want to make sure I do each year. It includes things I’ve done in the past, mailing due dates for cards and packages, gifts given, gifts received, thank you notes sent, and events attended.

If possible, I’ll proactively schedule time off from work to do holiday tasks.  Trying to accomplish them all during evenings and weekends often doesn’t allow enough rest for maintaining health.

Make room for joy: Connect with loved ones in person or by phone, text or letter. For many years I’ve alternated between Christmas cards sent in December and New Year’s cards sent in January depending on how much I had to do that season. Some years I didn’t send cards at all.

Include time to recharge in ways you love that feed your soul.  I love getting outside and moving my body. It’s important to not just set sights on getting through the holiday season.  Experiencing joy along the way is crucial for my sanity, and I will not do without just because I have a chronic illness. 

Adjust to changing plans: I’d forecasted the things I would do this holiday season to match a level that I thought could accommodate my MS fatigue.  Then my career placed demands on me I hadn’t anticipated.  Sure, I whined about the surprise demands before verbalizing that it’s my choice to participate.  The truth is I want to do these events; it’s only the scheduling that frustrated me given it challenges me with fatigue.  To adjust, I found time on the work schedule where I could come in late or take some time off to offset the longer days.  I also talked to a couple people who scheduled the events and asked them to consider spacing them out if done again in the future. 

Receive judgement with compassion: People will judge the choices you make.  Understanding that we can no longer do everything we’ve always done is hard to take for those that know and love us.  Sometimes it’s not about the task, it’s about them wishing our health will be okay.  It’s hard for us, but it’s also hard for them to accept that we have a serious illness that affects every aspect of our lives. Other times due to the invisible symptoms we experience and successfully accommodate, they forget we have limitations.  It’s up to us to share our limitations when they affect others.  No one who cares about us really wants our health compromised because of them.  Usually they don’t understand that the little things could be a tipping point for us that requires a long time to recover. 

It takes a lot of effort to live well with a chronic illness among people that have much more natural energy. They haven’t been forced to face these issues, and they may not understand how little things for them can be big things for us.  It’s our job to take care of ourselves while nurturing relationships and living a life we love.

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.