Shopping at Chair Level

By Doug Ankerman

The holiday season means it is time to hunker down into my wheelchair and face the Christmas hustle and bustle at seated-eye level.

Yes, Christmas shopping is all the merrier from the seated position. (Now I know why Santa is always sitting down!)

So with my list in-hand, let’s roll to the mall and purchase our “gifts of joy”……because nothing says “you are special to me” MORE than a shiatsu massaging cushion from Bed, Bath & Beyond.

Come on in

My first hurdle is just getting into the dang store!

This entrance at Sears is clearly marked “handicap accessible,” yet, there is no button to open the door. Forget the wheelchair, I quickly realize my “handicap” is trying to get into the place!

Usually, another courteous shopper will be nearby to help hold the door for you…..but this is Sears. I’ve seen ghost towns with more foot traffic!

Seasonal spirit

I’ve noticed store clerks and other shoppers are extremely helpful when you are in a wheelchair. They go out of their way to assist you. I figure, they feel bad because this guy has wheels for feet. That’s why I am always “over-the-top” positive when in my chair as I try to dispel the “woe is me” wheelchair image.

The squeeze is on

Shopping in a wheelchair can be tough battling crowds and parking — but the real challenge is in the aisles.

The squeeze is on as you try to fit between the displays for house slippers, glittery turtlenecks and NutriBullets.

Here’s an aisle that would be a tight fit for an anorexic fashion model — let alone a wheelchair!

Going through there gave me greater appreciation of  birth.

Caution: Stay Back

Finally, from a seated position, you tend to get an in-your-face view of everyone’s backside.

Gluteus I-Maximus.  I’ve seen butt cracks that make the San Andreas’ fault seem like a fine line.

Hip Huggers scream “uncle” in mercy.  I saw a jeans tag I gotta believe was triple digits!   If denim was an animal — the species would be extinct!

And from my box seat, it is not only “seeing is believing”…no, you see, I get to enjoy the “sounds and smells” of the season as well, if you will.  Let me put it this way, no one claims to eat the holiday fruitcake, but someone is — and I am caught in the cloudy, odoriferous haze that follows.

Through crowds, long lines, charge cards and gift receipts…wheelchairs or not, we muddle through to finish our holiday shopping with moments to spare.  Just enough time to catch our breath before we gather with family & friends — AND gear-up for our December 26th visit to the stores to return our house slippers, glittery turtlenecks and NutriBullet, right?  May you have a tremendous Christmas holiday!

*Doug writes about MS and other nonsense with a humorous twist at myoddsock.com.

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Balance and Moderation

By Lauren Kovacs

This is a Grinch every MS person faces this time of year. Even those who chose not to celebrate will be affected in some way. Even if you don’t bring that creepy “Elf of the Shelf” into your home, the season seeps into your life. Like glitter, it sticks to everything.

I have had to hand the holiday reins over to my family for most things Christmas. I did what I could. Each year, I find something else I cannot do. I am thankful my husband was always the cook and party planner guy.

I gave up helping decorate the tree or the house. I direct most of that now and point. Taking it down last year was very hard, especially telling the boys to wrap up certain ornaments for proper storage. (PS even fake candles melt in the attic no matter how well you store them.)

I do all my shopping online. I order online and if it arrives early and unwrapped, so be it. I let people know something is coming and to bag or wrap it. I can only do so much. The old saying, “it’s the thought.”

I keep a list of people and record what I bought and how much I spent. I can’t remember everything. I can budget and keep track of gifts all together on one list. I have a very big family. I can’t hang an ornament, but I can do the shopping part. That is huge.

Gift buying, angel trees, charity and such require a lot of planning. It can be a lot of work.  Most MS folks are great at planning. Embrace what you are good at.

Not being able to stand up might make you able to decorate the tree on the bottom half. Just be sure there are no glass items down there. Maybe you can still make fabulous wreaths. Maybe give those as gifts. Take a talent and latch on. Even small tasks can bring you joy during the holidays. Embrace whatever you can. Cookie taste tester is important.

Rest/nap and keep your schedule, too. It can be tempting to skip that nap or stay late at a party. Spiced eggnog is delicious, but is it worth it? Trying to walk like The Nutcracker might not be fun. Pick your battles.

We all have to live and be merry, however. Moderation is key here! Those of us that don’t eat gluten have to weigh the consequences of eating that one cookie. Is it really gonna kill you to have one cookie in celebration? One, not three or ten. I have been known as a cookie monster. I get it.

If I have been good about not eating gluten all week and I attend a party with cookies, yes, I will skip the seaweed smoothie and eat the cookie instead. Come on, live a little. I want to enjoy the holidays and if eating one piece of fudge is more fun than liver and onions, bring on the fudge, but self-control is also key.

MS folks have to balance a great deal at the holidays. Don’t deny yourself a small treat. Think of it as a “to me from me.” Our battle is long and small prizes now and then are ok.  Don’t be a glutton, but one small candy cane is not going to break the MS bank.

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Enjoying the Holiday Season When Health is an Issue

By Stacie Prada

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 put 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.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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You Are Stronger Than You Think

By Penelope Conway

There are so many things that I’m thankful for. I could list the usual: family, friends, warm fuzzy slippers and coffee…but those things seem so shallow to me now. Not because they aren’t important, but because my focus has shifted greatly over the years.

This morning, as I sat asking myself why I’m thankful, a flood of thoughts came to my mind. I have seen people faced with terrible circumstances who have become bitter in the process, and I have seen others rise above their challenges and become a light and a source of hope to the world around them. Which am I? Which are you?

As someone living with multiple sclerosis, I remember the day I sat in the doctor’s office when he gave me the unwelcome news that I have MS. I went through a full range of emotions in the weeks that followed from denial, to pain, to anger, to depression, to acceptance. It was a shocking blow to my life and something that I never saw coming. I had plans and MS wasn’t one of them.

It’s definitely been a hard road. I have had to adjust the way I do just about everything because even the simplest of daily tasks have become challenging for me. Some days I even have arguments with myself about getting dressed for the day or going to the store for something other than toilet paper. It’s amazing how much I took for granted before MS.

But you know, regardless of the struggle, I refuse to give up. I will NOT let MS keep me from being thankful…or from living.

The questions that I’ve asked myself, even just recently, have been simple. Can I be thankful regardless of the circumstances I find myself in? Can I find beauty in the chaos? Can I look this disease of MS square in the eyes and say, “I am not defeated because of you and in spite of the challenges I face, I will be thankful for each new day I am given.”

I decided to stop questioning why I was going through this crazy storm in my life and resolved to be thankful as I go through. I pictured myself as a tree swaying in the wind, but anyone who has ever lived through a tsunami, hurricane or tornado knows that even the strongest of trees break. It may still be standing when the storm subsides, but scars are left behind as a reminder of what once was branches and sometimes even the trunk breaks.

The truth is, multiple sclerosis changes you. It leaves scars both in your brain and spine, but also in your heart. You change. The storm you are enduring…people can’t see it. Some try to understand, but without living in your body and experiencing your journey by walking in your shoes, they just can’t understand the mental and emotional pains you face each day along with a slew of symptoms. They don’t know how often you cover your tears with a smile and piece together your heart with bubble gum and shoestrings.

Are you stronger because of MS? Absolutely you are. You are stronger even in the breaking. You have endured much and just like how a tree grows new limbs once a storm has torn it apart, you are growing and changing every day. You may be at a place where you feel like the storm is overtaking you, but the winds will calm and the sun will come out.

Hold on with everything you’ve got, then when you find your strength again…hold your head high proud of what you’ve come through and choose to be thankful for all you’ve overcome. I have learned that strength isn’t measured by the amount of things I can do or by how little I cry, it’s determined by the attitude that I have while going through the storms in life.

Not many people can make it through a storm, break, then keep going…but you are doing it. So the next time someone tells you to stay strong, smile in your brokenness realizing that your scars speak of your strength and tell a story that only a warrior can tell.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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An Ode to Mobility Aids

By Doug Ankerman

As one with multiple sclerosis for twenty-one years, I have much gratitude and thankfulness to share.

Certainly family comes to mind with their heartfelt devotion, care and attention to my round-the-clock stumbling.  My health practitioners earn a much deserved shout-out.  As do complete strangers willing to help load packages into my car, offering their place in long lines, to the deputy opening the cell door.

But this isn’t about them.

This message of gratitude honors the gaggle of mobility aids I depend upon each day.

First, my wheelchair.  My loyal steed.  Though reluctant to use the chair at first, it has become a savior of independence.  Taking me through sun, snow, rain and mud, my wheelchair has jostled my backside countless miles.  It has allowed me to see nature’s wonders.  Witness major events.  And traverse cavernous big-box stores.  Yes, independence would not be possible without my chair and for that I am grateful.

Next, my rollator.  The rollator sits in the garage mostly waiting for yard work to be done.  On those intrepid days, the rollator allows me to walk over uneven grass while keeping my weaving body upright.

Plus the rollator’s basket is perfect for carrying small gardening tools, gloves and chilled beverages on warm days.  (An MSer must keep hydrated, you know.)

Lastly, canes are my everything.  Always within arm’s reach.  Canes allow me to shuffle along without leaving messy fingerprints on the walls.  My canes help me stand.  Canes let me look someone in the eye.  And feel somewhat unburdened.  Although my gait is glacier-esque in speed, I have tried to create an illusion of fleet-footedness with the clever use of Nike swooshes added to their tips.

If you are curious, they didn’t help.  I am still sloth-slow.

My mobility aids have given me life post-diagnosis.  Hand controls, wheelchair, AFO, rollator, Dyna-splint, canes, grab bars, I feel like the Inspector Gadget of disability.  But it is all for a purpose.  A purpose of independence.  And for that I am grateful.

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Thank You, Maybe

By Lauren Kovacs

I admit this is a tough emotion for many MS folks. I am not exactly the “glass is half full,” sparkles, and glitter type. Not sure how I survived as a college cheerleader. Many were bubbly, barf. I was more of the stick in the mud with a giant white bow.

Gratefulness has been a learned trait. I force myself to see the green grass and pretty unicorns. I often see giant animals pooping on my lawn with sharp pointy things on their heads. Many of us have to really try to be thankful. Come on! MS has taken a lot and it is not a generous disease.

Alas, finding thankfulness is hard, but we must try. I would fit in well with a Grinch family, however green is not my color. See, glass half empty!

I have to “cheer” myself on just to get to the bathroom in time.  Finding things to be grateful for takes on a new identity. If I manage to tie my shoe or put elastic in my hair on the first try, I celebrate it.

Small things deserve great thanks. MS folks adapt better than most. I am a lefty, yet I have learned to apply eyeliner with my right hand. I drove my figure skating instructor nuts because I spun like a lefty and jumped like a righty. In kindergarten, I cut paper right but, wrote left. Drove my teacher crazy enough to put me in some special ed. classes. Little did I know that one day this ambidextrous trait would come in handy. That is something to be very thankful for.  I still can’t write right handed, yet every other thing I can do with my right hand.

I learn to be thankful for much smaller things. Simple stuff does matter. Think about just getting through the day. Toilet paper, straws, walkers, naps and all that meaningless stuff is, in fact, deserving of our thanks.

I am thankful my boys can enjoy gluten. Stuffing at Thanksgiving would suck. I am grateful I have enough self-control to resist it. Talk about resisting temptation.

MS reveals how tiny stuff can induce great thanks. I am very thankful for anti-bacterial wipes. I can de-germ my walker and wheelchair wheels pretty easily. Think about where they go. When I did horseback riding therapy, those wheels went over horse poop.

Even though I have had to give up my jeans, being small enough to wear fun kid-size leggings is a trade off. Yes, I have lots of sneakers too, but less of an ankle injury risk than heels. I am truly thankful for that.

It may take some thought, but we can find stuff to be grateful for. It might seem simple to some. I get weird looks for being thankful for my piggy dog, but he cleans up all the food I drop on the floor. He is now on a diet though. Poor guy. He loves food.

I am thankful for having a life jacket. Drowning in my own pool was not on my bucket list. Small things to be grateful for shows humility. It can be fun, too.  I love that I can paint my own nails, if I use glitter polish. Covers the mess well.

When going around the table talking about what you are thankful for, think. Small things show that you have character. It might make someone else see how blessings come in all sizes. I personally, am grateful for whoever invented elastics for pants. Sweet tea is a close second. Electric toothbrushes are a lifesaver, too. No swamp mouth.

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Being Grateful: Validate the Hardship and Strive for the Bronze

By Stacie Prada

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.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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Never Stop Asking Questions

By Penelope Conway

Making my way through the medical insurance nightmare has been a challenge since being diagnosed with multiple sclerosis. It wasn’t something I thought much about before MS came along. I never really got sick so health insurance and my own well-being just wasn’t a priority. Talk about a learning curve. I was thrown into things head first and then bounced around a few times before landing hard with a thud.

My life was suddenly filled with doctor appointments, medications, unpredictable symptoms and massive medical bills. I found myself in this new world of the chronically ill and I didn’t like it one bit. To be honest with you, it scared me more than anything I had ever been through.

I think the first year after I was diagnosed, I spent much of my days in a mind numbing fog. I became overwhelmed with the vast amounts of information I found online about MS and the high costs associated with it. The more questions I asked, the more questions I had.

I became more concerned with being able to afford my co-pays and medical insurance premiums than with the latest phone apps or music downloads. I found myself searching for insurance plans that made MRI’s and durable medical equipment more affordable. I researched Medicare, SSDI and early retirement. I looked for ways to afford home modifications and accessibility aids.

I discovered that no one can look out for me better than me.

When I was searching for a supplemental insurance plan that would cover all the things Medicare doesn’t, the monthly cost was too high for me to be able to afford. So, what did I do? I got online and through asking tons of questions came across a foundation that helps people with MS pay their monthly insurance premiums. That was something I would have never known about if I didn’t dig around for answers myself.

I found that asking questions is the best thing anyone can do for themselves.

When the cost of my pain medication went up, again I got online and found that my Medicare drug plan had an exception form that can be submitted to request a lower co-pay. I had my doctor help me fill it out, sent it in and the cost of that one medication went from $45 a month to $3. The insurance company won’t tell you about that option in bold print on their home page. It’s something you have to ask questions about and search for yourself to find.

Then there was the time a few years ago when my powerchair was damaged in a car accident. I was okay but my chair got banged up a bit. I discovered that my homeowners insurance covers things like that. I was able to get a new chair to replace the broken one. Who knew homeowners insurance (or renters insurance) worked that way? I sure didn’t. Another lesson learned by again asking lots and lots of questions.

I don’t think I will ever understand insurance or how they calculate the costs associated with their services, but through asking tons of questions and digging around for answers I have been able to ease much of the costs associated with MS and living with a disability.

You have to be your own advocate, do your own research and never stop asking questions! You may not be able to control the progression of your MS but that should never stop you from taking control of your own health care.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Dealing with Insurance Denials

By Stacie Prada

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 look online for 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 navigate 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 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.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Changing Routine

By Lauren Kovacs

I was employed outside the home years ago, but I chose to stay home when I started my family.  Just when I was ready to go back, after 12 years, the MS had other plans.  Routines and MS are a must, for me now.  I love routine!  I can’t do “last minute Lucy” or be spontaneous.

I have the same foods for breakfast and lunch.  This helps me keep my bowel routine.  If I have not gone potty that morning, I rarely leave the house. Staying close to my diet is tough, when away from home.  I love junk food.  Gosh, I love it.  I really love gluten too.

I nap at the same time everyday. Even my dog knows when naptime is.  I schedule everything before noon.  Even Provigil let’s me sleep.  Routines are essential.

You do have to bend the routine at times, however.  Just make sure you have a plan, if your routine takes an unexpected turn.  Knowing ahead of time what to do, if your routine is pushed off a cliff or thrown into a muddy ditch.

A recent two-day beach trip left me for dead. I knew the MS sharks would circle the chum, but I did not have a plan.  I ate out and while it was tasty, the gluten boat threw me in with the chum.  More MS sharks circled.

It took days of fatigue, tears, stomach issues and fights with other germs to come out on top.  I conquered the mountain.  When I only needed one nap a day, I knew the current was changing.

Two weeks later I was still in bed by 8pm but, my three boys had a blast so, it was worth it.  I still was face down in the bed trying to get a nap.  Alas, I was finally able get into the bed and didn’t need to sleep on the floor.

MS is not glamorous.  Have plan B and C.  Routines are wonderful, but have a back up plan or two or three.  Being thrown off a cliff might seem ok, if you can climb up.  Once you make it to the edge safely, then what?  Don’t think that because you feel ok that you are.

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