Do the Patient Billing Double Check

By: Matt Cavallo

Raise your hand if you went to school to understand medical billing? My best guess is that the majority of you did not raise your hands.

Alright, this time raise your hand if you understand the difference between a medical bill and explanation of benefits. Again, my best guess is that most of you did not raise your hand.

An explanation of benefits (EOB) is a statement summary of charges sent by your insurance company about an episode of care. The EOB is an FYI of what is covered or not covered, but it is not necessarily an accurate reflection of your medical bill.

Your medical bill will always come from the facility that you received the medical service. These bills will state the billed cost (what the facility charged your insurance), insurance reimbursement amount (what insurance paid to the claim generated by the facility) and the patient responsibility (the amount you owe).

Now, the patient responsibility part of the medical bill requires you to do a double check to ensure that you are paying the correct amount. Often times the patient responsibility can be inaccurate if it wasn’t coded properly. This is especially true if you have some special situation like financial assistance for a specialty treatment.

Take me for example. For my MS medication, I have a financial assistance program offered from the pharmaceutical company that manufactures my treatment.

As an aside, if you are not aware whether or not your pharma company offers a copayment assistance program or if you qualify, that information is generally listed on the pharmaceutical company’s website.

Back to my story. So, the terms of my financial assistance program state that I am responsible for a $10 copayment for each treatment. Therefore, if I am billed $10.01, the medical billers are off by a penny and I can dispute the charge.

I started receiving bills that were over $100 per treatment. These bills also matched the responsibility on my EOB, so it stands to reason that I would be responsible right? Wrong.

I do have a background in medical billing. I used to manage a hospital clinic and we had this problem all of the time. The problem is that the financial assistance programs require a different workflow than traditional medical billing. A lot of time the billers are unaware of how to apply these financial assistance programs or they are not marked properly in the medical chart.

If the medical biller does not apply the financial assistance program to the bill, then an erroneous charge is generated. As a patient with a financial assistance program, you are not responsible for this error. The problem is that you may not always know that you are not responsible. You think that since the bill matches the EOB that it must be right. This is not always the case and it is contingent upon you to be your own advocate.

When I started getting these billing errors, I took action. I called the 1-800 number on the bill and I contacted my pharmaceutical company to let them know. My pharma company reached out to the medical billers and that bill was resent stating that I only owed $10!

Doing a double check, I saved myself $90. This has happened to me a couple times after the initial erroneous bill. Each time I called and each time I was only responsible for $10 per visit. By now, I have saved over $500 this year by doing my double check and not being afraid to pick up the phone and question the bill.

From my time managing the clinic to situations with me and my family, to helping friends of mine, there are any number of reasons why double checking your bill can be beneficial. One last story, my wife got billed an out-of-network lab draw for a well woman exam at an in-network facility, generating an over $700 bill. Bills are generated by computers, but people are in place if you have any questions regarding the bill. After we got over the sticker shock, I said let’s call. We were responsible for our $25 copay and that was all!

Being a patient with multiple sclerosis is tough. Don’t let medical billing errors make it any tougher. Remember to be your own advocate and if you are questioning a bill, don’t be afraid to pick up the phone and do the patient billing double check!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Journaling My Story (MS)

By: Matt Cavallo

In July of 2005, I was in a deep depression. I had just been diagnosed with multiple sclerosis in June of 2005 and I was in the midst of an internal struggle trying to come to terms with being newly diagnosed.

I have a family history of MS. My aunt had MS and died when I was only four years old. Her MS progressed quickly and she left us at a young age. Watching me lose my ability to walk was particularly hard on my family who couldn’t help but think of my Aunt Loretta when looking at me. It was like they were reliving a scene from my aunt’s life that did not end well.

Those emotions that my family experienced in watching my aunt progress through her disease were awakened as I started to progress. Unintentionally, those emotions were transferred to me making it impossible to cope or come to terms with my diagnosis. So, I did what I always do, and turned to the pen.

You see, I’ve been writing since I was a small boy. Whether it was poems or short stories, writing was always therapeutic for me. So when my symptoms first presented themselves, I started keeping a journal of what I was experiencing.

At first, the journaling was very helpful for my memory. Then, as I got admitted to the hospital, I used my journaling to capture the patient experience. I had never been in the hospital before and between the pain meds and all of the tests, I wanted to capture all of this information in my journal so that I could refer back to it when I was discharged.

Little by little, my journal began to grow. I had captured my symptoms, my hospital stay, follow-up doctor’s appointments and now I was capturing my depressive thoughts as I struggled coming to terms with my new fate. I just had no idea what path in my life my journaling would take me on.

Then it happened. I found myself sitting in my pick-up truck at the beach, listening to the waves crash. All of a sudden, the song Moonshadow by Cat Stevens, popped into my head. I used the inspiration from that moment to carry me to Barnes and Noble.

At Barnes and Noble, I wanted to find a personal story of the diagnosis that I went through. I wanted to hear another person’s story, so that I would know that I was not alone. However, the books on the shelf were all technical or diet manuals about MS. Disappointed, I returned home and pulled out my journal.

As I flipped through the pages of my journal, I could recall my symptoms, my emotions, my fears. It was at that moment that I realized I was reading the story I was searching for. It was all in my journal. I would spend the next couple of years transforming my journal, into my memoir. Now, in an ironic twist of fate, Barnes and Noble carries The Dog Story: A Journey into a New Life with Multiple Sclerosis.

My journal has been transformed into the very thing I was seeking. Now it is a resource for other people who are experiencing the diagnosis I had faced all those years ago. Today, I continue sharing my journal though my books and my blogs. Sharing my story with the world has been the most rewarding and humbling experience for me. My best days are always when a reader reaches out to me and lets me know that my story helped.

Journaling doesn’t have to lead to writing a book or blog, but it is an important way to remember how you were feeling at a certain place or time in your life. How are you sharing your story? There is someone in your life right now who may not understand what you are going through. When words fail you, write down your thoughts and feelings and share with that person. If you can’t write, keep a picture journal or scrapbook. You will both be glad you did.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Life with MS: My 5 Ways to Stay Happy, Lollipops and All

By: Jeri Burtchell

Let’s face it, even days that start out all “sunshine and lollipops” sometimes wind up with you getting sunburned and the lollipop stuck in your hair. You can’t prepare for the negative things that happen in life and those with MS know what I mean when I say we have our fair share of them.

Whether it’s awakening to an unruly new symptom, or spilling all your medicine on the floor when the top finally gives, you know what I’m talking about. Some days it seems like Murphy’s is the law of the kingdom.

jeri blogBut what can you do? Well if you sense an impending bad mood brought on by circumstances beyond your control, I say put yourself in time out…on the beach…in a hammock. And don’t come back until your attitude is better. If that were possible we’d all be heading for the white sands and drinks with umbrellas.

Okay so that advice was just wishful thinking and not exactly helpful, so I’ll make it up to you before I ruin your day and risk your wrath. Here are five sure-fire ways to happy-up your day.*

  1. Laugh at it. When circumstances threaten to punch a hole in your life raft, hang on. Take a step back (provided it was a symbolic life raft we’re talking about) and look at the big picture. Surely there has to be something funny about this that you’re really going to laugh at later. Granted sometimes it’s years later, but you’ll laugh. Try to recognize it now.
  2. Take a nap. Seriously. Sometimes it seems like everything is going wrong, and maybe it is. But it could just be that fatigue has made life temporarily insurmountable. Just rest a while and sleep on it. Most of the time, for me anyhow, I will awaken feeling like I’ve got a fresh start (and even thinking it’s morning again when it’s actually 3 in the afternoon).
  3. Hug a pet. Unless it was your awkward doberman who knocked the pill bottle out of your hands to begin with, our pets have a way of making it all better. A furry snuggle can drain the negativity and stress from your body and has even been proven to lower blood pressure.
  4. Get back to nature. No pets to hug? Next time you trip over a laundry pile or discover the leftovers were out all night, try finding a quiet spot outside to commune with nature and reflect on something that redirects your mind and brings you happiness. A little sunshine (with proper sunscreen) does wonders for elevating your mood. And bird songs don’t hurt either.
  5. Phone a friend. Make sure you have that one go-to friend on speed dial. Someone whose voice brings you joy even if they’re reciting the alphabet. You know the person. But DON’T talk about your problems–that’s not the point! Distract yourself by asking them how things are going. Then really listen. By focusing outward you stop dwelling on your own negatives and before long you will be happy again.

You probably think much of this is silly nonsense, but just trust me. Give it a try. Life’s too short to stay down in the dumps and you really do have the power to create your own positivity. We might not be able to choose what life throws at us, but we don’t have to keep going around with lollipops stuck in our hair either.

*Your mileage may vary. Batteries not included. Some assembly required. :)

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Never an Easy Season with MS

By: Matt Cavallo

I was really excited. My allergies were horrible and I was feeling absolutely miserable. Why does this excite me you ask? When I feel horrible, I get inspired to write and was going to write a piece on allergies and MS as a follow-up to last year’s, Is There a Relationship between MS, Allergies and Histamine blog.

Then, this happened to my local weather in Arizona:

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Out here in Arizona, we say that three straight days over 100 degrees kills all the pollen. I don’t know if this is true or not, but my allergies certainly haven’t been bothering me since it got into the 100’s at about Friday of last week.

But guess what? The heat has been killing me!

Luckily, I got a Kool-Max cooling vest, similar to those in the MSAA’s Cooling Program. Now, even in the dog-days of summer, I can still participate in activities or chores and not feel trapped inside by the summer heat.

This got me to thinking, is there ever a perfect season to have MS? We all know that the summer heat, no matter where you live, is not good for MS. The symptoms of heat exposure can cause a pseudoexacerbation, or brief episode of neurological symptoms not classified as a relapse. These pseudoexacerbations can come and go all summer long as the heat and humidity persist.

However, during the cold dark of winter, us MSers yearn for a hot summer day. The low light of winter is not generally considered good for people with a Vitamin D deficiency, as most of us living with MS may experience. Winter also presents trip hazards with ice and snowy conditions, so those of us more prone to falls have a harder time getting outdoors and staying active during the winter.

Fall presents many of the same trip hazards. As soon as the leaves turn colors, they drop to the ground and become slippery to walk on. Fall also has dramatic temperature fluctuations where it can be summer hot one day and then brutally cold the next. This is where cold and flu season start to come into play along with the pseudoexacerbation possibility from those really gorgeous summer-like fall days.

That leaves spring as the only possibility for an easy season living with MS, am I right? Wrong. Spring is the reason I started writing this blog. It was nice this year, but the pollen kept me from enjoying it. I could not differentiate from an MS day or a sick-with-allergy day. The inability to breathe really caused excess fatigue rendering me unable to discern the difference between allergies and MS symptoms.

The truth is there is no easy season when you live with multiple sclerosis. However, each day is what you make of it. Don’t let the changing seasons stop you from living your life, rather adapt with the seasons and plan accordingly. Wear sunscreen, stay cool and don’t let MS stop you from having the best summer ever!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Summer Heat: The Enemy of the MS Patient?

By: Meagan Freeman

Before my diagnosis, the blistering sun of the summer season was my best friend. I was a swimmer, wake-boarder, and sun worshipper. I enjoyed my teen years, soaking up the rays in the California sun, trying to get a nice tan and reading magazines with friends. The hotter the better was my attitude! Boy, have things changed since my diagnosis in 2009.

Now, I have had to accept that the heat is no longer my best friend, but rather, my worst enemy. The heat of summer can be an incredibly challenging thing for those with MS, and it can lead to staying home alone while the rest of the family enjoys the beach, pool, and outdoor summer activities. For several years, I felt depressed about my situation. I had several relapses each summer, and my family members were enjoying my formerly favorite activities while I stayed home on the couch in my air-conditioned home, a virtual prisoner.

After several years of this seasonal imprisonment, I began to search for ways to beat the heat, and still enjoy family time outdoors. There are many options for combatting the summer heat, and I want to share some ideas for other individuals struggling with this issue. Fortunately for us, cooling technology has dramatically improved over the years. I always avoided cooling vests, merely because of vanity. I did not want to be seen with a bulky, unattractive cooling vest; but fortunately we have some wonderful, stealth options now.

The key is to keep the core temperature at a normal level, and through cooling technology, individuals can enjoy the summer days without experiencing flares and relapses caused by the heat. Heat leads to increased inflammation, which we need to avoid at all costs. Fortunately, simple cooling products can achieve the goal of maintaining a normal core body temperature, despite warm days.

MSAA has a wonderful program, offering free vests and cooling products to individuals who qualify for the program. The link for the MSAA cooling vest program is: http://mymsaa.org/msaa-help/cooling/. There is a short application to fill out, and this program can offer a vest to qualified patients at no cost. For those who may not be financially eligible, there are several other companies offering these types of cooling products. A good cooling vest can mean the difference between missing out on family activities, to being an active participant.

In addition to these products, I have found several MS vacation organizations, including the “MS Cruisers.” This organization offers cruises to many ports of call around the world, specifically tailored to meet the needs of MS patients. “This cruise is open to all MS patients, family members and friends who share an interest in the MS community, believe that health and fitness are powerful tools for overall well-being and independence, want to travel and interact with others who are facing the same challenges; and are aiming for the same goal of enjoying life to its fullest as they go through the process of adjusting their lifestyle to best suit their constantly changing needs.” (MS Cruisers.com, 2015.) Consider checking out this site for many options for amazing summer cruises. The site is located at: http://mscruisers.com.

I believe that the key to finding happiness and acceptance during a life with MS is to continue to enjoy all of the activities we enjoyed before our diagnosis. Through the use of simple cooling technology, and finding the right vacation options, we can continue to participate in life, enjoy the sun, and feel as “normal” as possible. If you find yourself imprisoned at home in the AC all summer, consider reaching out and trying one of these amazing programs. This can be your ticket to a wonderful, active summer season. Go enjoy it!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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How MS Taught My Son a Life Lesson

By: Jeri Burtchell

I’ve discovered that children born to people with chronic conditions are often the most empathetic and compassionate people I’ve met. You can give kids life lessons when you’re in the grocery store and see someone using a cane or a wheelchair, but nothing quite explains the real everyday hurdles like living with someone who has a chronic illness.

I have two boys. My older son, Mark, was 16 when I was diagnosed. The younger one, Alix, was just six months. Mark was your typical teenager: independent and active, with a big circle of friends and activities that kept him busy outside the house. By the time Alix was a preschooler, Mark had moved out to begin his own journey into adulthood.

It was like raising two “only” children, with one big difference – the second time around MS was calling the shots.

Alix never knew me any other way, so the fact that I used a cane, or occasionally needed a wheelchair was just normal to him. He’d sit in my lap and ask me to take him for a ride. He didn’t see me as different. Nobody whispered to him “it’s not polite to stare”. When he looked at me, he saw his mom and nothing more.

He’s a junior in high school this year, taking honors classes. Tonight we’ll be attending an award ceremony where he’s receiving a mystery award. He’s been an easy kid to raise. Never gets into trouble and is always around the house helping out. He’s cheerful and never complains no matter how much I ask of him.

Things haven’t always gone smoothly, though. When he was in sixth grade he was having a hard time. The transition to a new school with new friends was a lot for him to handle. When it came time to attend one of his band performances at school, I really struggled over whether I should bring my cane or not.

I didn’t want him to be teased for having a mom who was different, but neither did I want to fall down. Which would be more embarrassing to his middle school mind? I decided to let him choose.

We stood by the car and I whispered to him, “should I just leave my cane here and ‘wall-walk’ where I can?,” and he looked puzzled.

“Why would you do that? Don’t you need your cane?,” he asked.

“Well, I don’t want to embarrass you, you know, if the kids tease you because of this or something.”

He became really indignant at the thought. “Just LET someone say something, Mom! Nobody’s going to make fun of you. What kind of person would do that, anyhow?,” he asked.

I used my cane and he took my other hand, proudly.

That was just one special moment among many that made me see that having MS has not always impacted our family negatively. Do I wish I didn’t have it? You bet! Does Alix sometimes feel “ripped off” that he didn’t get the younger, healthier model of Mom than Mark did? Yep.

But we do what we must to live the best life we can despite MS, and in the process it has helped shape my son into a fine young man who I know will always wear his compassion and empathy like a badge of honor. It’s who he has become, and I’m proud to be his mom.

So for those who have small children and wonder how your MS will affect them as they grow up, take heart. I bet they will be amazing, too!

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Mothering Through MS

By: Meagan Freeman

How will my children remember me?

Isn’t that a question every parent asks? We want to set the best example for our kids, leaving a legacy behind when we are gone. Often, this is one of the main reasons people choose to become parents in the first place. One of the first fears in the minds of parents who are diagnosed with MS is: “How will this disease affect my ability to parent?” Followed soon by, “Will my young children remember me when I was healthy?” MS often strikes in the prime of adulthood, when most people are finally successful in a career, finally married, or starting new families. This is the cruelest aspect of this illness, the theft of young optimism. We want our children to recall these years of health, vitality, energy and strength. We want them to remember vacations, playing ball, swimming, and dancing with us. We want them to remember us as young, beautiful adults who never failed them; however, illness interferes with that image, and creates an image of inability and dependence.

Mothers with MS face an incredible challenge, coping with an incurable illness while tending to the needs of little ones, putting the needs of others before their own. In my own family, I witnessed the strength and perseverance of two mothers, facing incredible odds, refusing to give up no matter how difficult life got. MS was no match for these incredible women I am referring to, my grandmother Bette, and her daughter Susan, who happens to be my own mother. My grandmother was diagnosed with MS in the 1950s, and she had 7 children at the time. As a child of 5 or 6, I have vivid memories of visiting the home of my grandparents. We spent many holidays there, the home where my mother and her 6 siblings grew up. My grandfather Stan was the breadwinner, and my grandmother Bette struggled while trying to raise her children. She had been diagnosed with multiple sclerosis in the 1950s, when there were no treatments available. She was basically told to “get in bed and stay there.” Faith, love, and hope were the keys to their success, and my grandparents were a living example of heroism and true love despite devastating life circumstances.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them. When I question whether truly unconditional love exists, all I need to do is recall this life story and look at their pictures. Despite MS, my grandmother dedicated her life to her children, instilling love and values that remain to this day. You see, what matters at the end is our life story, our legacy; the story that will be told to future generations. Each of us is slowly writing a story that will be told someday, and it is incredibly important that we write one that we will feel proud of.

My mother was the oldest child in her family. Due to her mother’s progressive MS, at age 12, she took over a majority of the household chores and duties, becoming a surrogate mother for the 6 younger siblings in the home. My mother needed to grow up quickly, and assume the role of a parent at a very young age. At the time, there was simply no choice. Rather than playing, my mom would cook, clean, and help younger children bathe. She sacrificed her own needs for those of her family, and she never failed in her duty. The defining characteristic of a mother is the resolve to care for her children and protect them from harm, no matter what. My mother continued to care for others when I was born, and she was the most wonderful mother anyone could have asked for; I truly don’t know how I got so lucky! She provided me with a beautiful childhood, and gave me all any child could ever need, always putting my needs before her own.

My mother set a wonderful example for me, and I try to carry that on each day. I struggle with MS daily, but despite those struggles, I can still enjoy my children. I see their innocence, their desire to see the world as a beautiful place. My goal is to continue to allow them to see things as awe-inspiring, breathtaking and amazing for as many years as possible. I try to share openly and honestly with them, letting them see certain aspects of my disease, but shielding them from others. I am fortunate to have witnessed two incredible examples of motherhood in my own family, and I think of these incredible women every day. Each mother with MS is going above and beyond, coping with physical challenges while sacrificing daily for her children. Thank you to every one of the MS moms in the world; each of you is a true hero. Thank you, Grandma Bette, and I love you, Mom! Happy Mother’s Day to all…..

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Getting My Act Together: Staying Organized Despite MS

By: Jeri Burtchell

It’s easy to let fatigue be my catch-all excuse for why things are in disarray around here, but if you’ve known me for more than 16 years I’m not fooling you. Actually, I prefer my mother’s excuse for why I’m not very organized…

“You’re an artist, Jeri, and artists tend to be messy because their minds are busy creating.”

Sometimes, though, it seems my messy ways have only created more headaches and hurdles for myself — something I seem to have less patience for as time goes by.

I’ve decided to try a new tactic, though. It’s called “be kind to yourself.” So now, when I see self-made obstacles to stress-free living, I try to take off my blinders and correct one small thing at a time, making my living space – and my life – more “Jeri-centric”.

Case in point: Every time I need a pen I head for the three side-by-side pen cups on my desk. They are overflowing with pens I’ve collected on trips out of town and harvested from the copper-rich soil of pennies at the bottom of my purse, where together they perpetually weigh down my every move.

In what has become an exasperating ritual, I select a pen, begin to write, only to run out of ink three strokes into my thought. Frustrated, I put the pen back in the cup and select another. I’m often doomed to repeat this process four or five times before chancing upon a pen that can outlast my need for ink.

When my brother recently visited, he noticed this ritual, and asked me why I didn’t just toss the ones that don’t work. Such a simple, logical question and yet it had never occurred to me. Most likely because tossing the pen meant being near the trash can and required additional physical exertion. Yet in the grand scheme of things he was right.

Immediately I took all three cups to the kitchen counter where, one by one I assessed their capabilities by scribbling on a notepad. If it didn’t produce, it faced instant death by trash. In the end I had one pen cup full of pens that write, and had freed up two coffee cups.

I felt so good about that accomplishment, (and the way I am rewarded with ink every time I grab a pen to jot a note), that I’ve decided to see where I can make other small adjustments to be kind to myself. Here are a couple other ideas that I came up with. They might seem like “no-brainers” to a more organized person, but to me they were epiphanies that keep on giving, making me appreciate each day how thoughtful I was to make these small adjustments in my recent past.

● I went through all my spiral notebooks I keep around for work and ripped every page out that had anything written on it. Then I created project file folders, sorted all the notes for each project, and filed them. Now I no longer spend half an hour leafing through notebooks frantically trying to find minutes of a certain conversation.

● I went through a couple of piles of “chronologically filed” papers I’ve been meaning to go through and made three stacks: 1) Important/Save, 2) Needs Action and 3) No Longer Relevant/Trash. Things like the deed to the house and my passport went in the first stack, bills to pay went into stack two, and expired coupons, magazine subscription offers, or grocery lists from a month ago went into stack 3 (a.k.a. the trash can).

It’s amazing how easy it is to stay up on paying the bills now that I know where they are! And when it was time to take my son to get his Learner’s Permit at the DMV, I knew without a doubt where I could find all the necessary proof of ID for both of us.

My new hurdle is maintaining this level of order. But I’ve discovered that if I spend a little time at the end of the day making sure my work area is organized and the papers are filed it’s amazing how easy being kind to yourself can be.

Herding all the pens back into the cup corral at night and leaving myself a to-do list for the next day makes waking up the next morning a whole lot easier. It’s like I’m finally working with myself instead of plotting my own destruction.

So be kind to yourself and spend just a little time organizing a bill-paying station or home workspace with all of the things you might need. Cutting back on clutter-induced stress can have lasting benefits. Now if the bills would just pay themselves I’d be all set!

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

 

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The first “Ask Me Anything” on MultipleSclerosis.net!

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You may have heard of one of the latest trends in social media discussion forums, called “Ask Me Anything”, or “AMA”, popularized by websites like Reddit. An AMA is a common chat topic or general discussion forum thread in which people ask someone who is an expert in a certain area questions relating to his or her life or expertise. Last month, MultipleSclerosis.net hosted our first AMA event on our Facebook page, and it was amazing! The event was hosted by our team of moderators in honor of MS Awareness month, with the goal of providing a set time where members of our community could ask our team anything about MS symptoms (our chosen theme for this particular event). The results were tremendous! Our first AMA prompted over 240 posts in just one hour – including questions, comments, and replies – which averages out to about 4 posts per minute!

Though the main theme of the AMA was MS Symptoms, a wide variety of topics were discussed, including rights at work, discontent treating physicians, how to provide support to relatives and loved ones who have MS, how to manage fatigue, what it means to have secondary progressive MS, and what to do upon first receiving an MS diagnosis.

Our moderators and team answered the community’s questions based on personal experience as well as the wealth of articles on MultipleSclerosis.net. Here is a brief summary of some of the topics that were discussed!

I’m unhappy with the treatment I’m receiving from my current neurologist. One place to start is by taking a look at a registry of MS experts here. The National Multiple Sclerosis Society may also be able to provide recommendations for practitioners in your area. Additionally, attending patient meetings can be very helpful for coping with many aspects of having MS, and they also serve as a great source of information like names of good doctors.

What can I do to manage my MS fatigue? Believe it or not, exercise actually helps some people with MS manage their fatigue. – It stimulates certain chemicals in the brain to make us feel better. Working full time while taking care of one’s family is exhausting for MSers. Another idea would be to try meditation or yoga for its calming and healing effects.

What are my rights at work with regard to disclosing my condition, and receiving the support that I need? The ADA requires an employer to provide assistive equipment/aids so someone who is disabled can continue doing his or her work. It also prohibits the employer from firing someone for being disabled, but does not protect you from termination if the employer cites other reasons. It is also important to contact someone in your Human Resources (HR) department if your company has one. Those who work in HR are experts in this subject. Our expert, Cathy, also wrote a great article about helping those who are disabled look for work.

How can I be helpful to a loved one who has MS who lives far from me? One of the best ways to provide support is to be there for loved ones when they need to talk, and show an interest in how this is affecting her or her life. Ask her how she’s doing, and listen to her response.

What is secondary progressive MS? Secondary progressive MS is a type of MS. While relapsing-remitting MS is the most common type of the condition, secondary progressive MS impacts many in the MS community. Here is some more information on SPMS.

What does it mean to be in remission? Being in “remission” doesn’t necessarily mean that your symptoms completely disappear (some people will return to feeling exactly as they did before the exacerbation began). Stephanie wrote a very comprehensive article on relapses and remission in her MS 101 on understanding relapses.

Where should a person who was just diagnosed with MS start? You should start with a request to see a neurologist– preferably one who specializes in MS – and have a complete workup of your history and an MRI. Unfortunately, it can take a long time to find answers.

We truly appreciate all of our community members who participated in our first AMA, and of course our amazing team of moderators who were feverishly responding to all of the questions during a very exciting hour! We will definitely be hosting more AMAs in the future, so we will keep the community updated when we have the next one scheduled!

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Worth Fighting For

By: Matt Cavallo

There was a touching moment at my last neurology appointment. You see, I have been with my same neurologist since moving to Arizona in 2009. Throughout the years, he has been by my side through good and bad times. This time was different. He seemed less like my neurologist and more like he was proud of me.

In 2010, I was suffering from severe spinal stenosis due to a bone fragment that had chipped from my C6 vertebra. I required emergency neck surgery or faced the risk of being quadriplegic. After surgery, I fell into a state of depression. Relapse after MS relapse building to a surgical climax, I just felt like my quality of life was never going to be what it was before having MS.

I was ready to give up on myself. Not only that, but I was ready to give up on my MS treatment, as well. And I did. I was required to stop my treatment prior to surgery. Post-surgery, I didn’t want to restart my treatment. I had had enough. I was sick of feeling like a science experiment or a pin cushion. It seemed like even though I was on a treatment that another debilitating relapse could strike at any moment.

One month passed post-surgery and I was feeling OK. A little tired, but OK. Then a second month passed with no treatment. Now, unbeknownst to me, I started to forget simple tasks around the home and office. A third month passed and I was dragging my left leg, had blurry vision in my right eye and couldn’t follow simple instructions. However, due to the brain fog I was in, I convinced myself that nothing was wrong.

That’s when my neurologist stepped in. I didn’t tell him anything, but you see I worked for a neuroscience clinic that was associated with his practice. One of the nurses called him and he made a special trip down to the neuroscience clinic to check on me at work one day. As a result of his visit, I found myself in an MRI followed by the news that my brain and spine were blossoming with active lesions. He ordered me a round of solu-medrol and a follow up with him the next week.

During that follow up, he wanted to know why I was acting the way I was. Why was I going against medical advice? I told him I was done fighting and that I had already been through too much. He spent the rest of the appointment helping me decide that I was worth fighting for. That my multiple sclerosis would have periods of relapse followed by periods of remission and that I needed to use the available tools to fight it with all I could. And I did.

Good Times: Last week, I walked into his office feeling like Norm on Cheers. I got to visit with old coworkers and acquaintances and catch up with old friends. Then, it was time for the appointment and this appointment felt a little different. He did his protocol tests and talked to me about lab results from a recent blood draw. Then he took the conversation in a different direction.

“Matt,” he said, “How are your travels? I worry some time that your life on the road is going to wear you down.”

“You know me,” I responded. “I want to use my story to go make a difference in the world.”

“When I think back to when I first saw you, to where you have come, despite the challenges.” He paused. “I’m just…I’m proud of you.”

Given where we have been and reflecting back on the past five years together, the good and the bad, I was speechless. This is a revered neurologist, that has been practicing MS in Phoenix since 1978 and he is proud of me.

At first, I was speechless then I responded, “Remember when you told me I was worth fighting for? Well, I believed you.”

I believe that all of you who are reading this are also worth fighting for. The question is, do you believe it too?

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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