No more stress? Is that even possible?

stress-and-post-its-penelope-cBy Penelope Conway

Stress is not a good combination with Multiple Sclerosis. I hear all the time how stress needs to be limited to keep from triggering an exacerbation, but how do you do that in a world full of “I want it now” people and “it can’t wait” situations?

There are hundreds of lists on the internet explaining what you can do to avoid stress, but listing things out and doing them are two different things. Then if you add MS into the mix of things, it seems an impossibility.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you have set for yourself.

You take a moment to rest then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated.  Somehow MS just doesn’t fit into a busy day and somehow you always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of your world. You get tired faster, weak muscles limit your functionality, your vision messes with your ability to complete even the simplest of tasks, dizziness and vertigo trip you up, and your thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with multiple sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

I have discovered that stress makes you extremely tired and can cause MS to worsen, but it’s stressful to avoid stress so you end up stressed out anyway. It’s really not easy trying to avoid stress. Ugh…just thinking about it is stressing me out.

So how do you fit a life with MS into a stress free list found on the internet? Well, for me that’s an impossibility. It seems MS doesn’t like lists or plans. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for me throughout the day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will the world fall apart if the laundry isn’t finished?

You are more important than the chaos that surrounds you and way more important than the stress that it can cause. Work on changing your workload bit by bit, little by little, moment by moment. You won’t be able to quit everything (which I happen to think would be nice to do at times) and you won’t be able to stop the world from spinning out of control, but you can make a positive change in your own life.

Take time to slowly work your way out of those over-commitments by finding others willing to step in and help. You may need to juggle schedules around and say no to people you normally wouldn’t say no to, but in order to simplify your life and relieve the pressures weighting you down, you have to do it. It’s not an option.

Do what you can today and leave the rest for another day. Take one step closer to living stress free, and before you know it you will be enjoying your life….even with Multiple Sclerosis.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (http://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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Make Life Easier To Get More Done and Lessen Stress

By Stacie Prada

note-cards-picEveryone I know feels overwhelmed at times.  They forget things, and they accomplish less than they’d like sometimes. I’m comforted when I have an organized life and am not worried that I’m forgetting something. I like to create systems that support me in being organized, simplify my life, and make life easier so that I can exert energy on the good stuff.

To reduce my stress level, frequently I put effort into reducing the number of decisions I need to make and the quantity of things I need to remember. If I don’t have a method for remembering it, I’ll get in a thought loop reminding myself to do it later. After a while, it can be crazy. It’s wasted energy that could be put to better use.

Streamlining things I do repeatedly makes them easier, less stressful, and more likely to get done. Making decisions takes energy. The more decisions I make in a day, the more energy it takes to get through the day. Decision fatigue is real, and when MS fatigue already affects a person’s health it can really lower their quality of life. Given that I want to be productive and maximize what I can accomplish, reducing the number or decisions I need to consider and decide repeatedly frees up energy and time for other things.

Simple ways I reduce the number of decisions daily life requires and ways I make decisions when I’m not in a time crunch are as follows:

  • Lay out my clothes the night before so that I don’t need to figure it out in the morning when I have a time limit for getting ready. I include my underwear and socks so everything is ready for me to get dressed and there are NO decisions to be made. My shoes and coat are ready by the front door, and so are my keys.
  • Create a packing list for things I do or places I go repeatedly. I refer to lists frequently before I go on a bike ride, take a long walk or hike, or go to the pool.
  • When making meals, make extra. Leftovers are easily one of the most time saving and decision reducing methods for reducing stress.  Think about how often you ask yourself what to make for dinner or your next meal.
  • Automate bill payment when possible. For things like electrical or phone bills, set up bill pay so that they automatically get paid with a credit card. I can pay multiple bills in one sitting when I pay my credit card bill. I also don’t need to worry about forgetting to make a payment.

Lots of times it’s not about being unable to do something I want done, it’s about not remembering to do it. It’s easy to forget things if I’m out and about or get distracted at home.  Creating memory triggers helps. Check out these easy ways to stay focused:

  1. Make reusable flashcards. I use 3” x 5” index cards for recurring tasks or habits I want to create. When I remember I need to do a recurring task and can’t do it immediately, I’ll pull that card out or make a new one. I’ll place it somewhere I look frequently. For me it’s the kitchen counter or dining table. It’s a time saver and memory jogger. These reminders are especially great when you share your home. Family members will realize that laundry needs to be done and may help without you asking. They’ll also appreciate that you’re doing things that contribute to the home when otherwise they may not have noticed.
  2. Set a timer: When cooking or doing things where I may not hear the buzzer, I’ll set a kitchen timer or phone alarm. This is great for things like laundry, cooking that requires pre-heating, or pulling something off the stove.  It’s not a failure to need to use these tools. I know people with perfect cognition that get distracted and nearly burn the house down by putting something on the stove and forgetting. The timer is a necessity for reminding me I turned on the oven or put a load of laundry in the wash. I don’t necessarily need to have a reminder card for that (even though it doesn’t hurt), but there are instances when the timer goes off and it takes me a moment to remember what it’s for.
  3. Leave myself a note: When needing to do something later, I’ll put a note in a hot spot I see frequently. It may be a post=it left in the car, at home or on my computer monitor at work.
  4. Put appointments and reminders on the calendar in a mobile phone with an alert.
  5. Create lists for what I need to bring for things I do repeatedly. I have lists for going for a walk, bike ride, leaving town, and getting back from out of town. I also have a pretty standard list of grocery items that I frequently eat. The point is to ease up on the number of times I need to figure out the same thing.

Often the difference between feeling overwhelmed and feeling like things are doable is one task or obligation.  If you’re stressed out and having a hard time getting things done, be brutal.  Remove things that don’t absolutely need to be done the way you’re used to doing them or would prefer to have them done.  What’s the minimum necessary to get it done, and when is the deadline? What can be delayed until tomorrow, next week, or next month? What doesn’t need to be done by you or at all?

Get over the feeling that it’s embarrassing or not okay that you need reminders. I once had a family member laugh at me because she saw my reminder on the counter to “pack” for a trip.  She thought it was absurd that I was reminding myself to do something that was obvious.  Yes, it was needed and obvious, but my simple reminder kept me focused and less stressed.

I’ve learned that a single tracking or organization tool isn’t going to work for everything I want to remember or do. Just like Facebook, Instagram, Pinterest, email and texting have different strengths and times where they’re appropriate, organization is a compilation of lots of little methods.  Think about what works and why it works for you.  Then build on that.  Where do you need to remember things and where do you frequently look? Make a system that works for you.  It’ll be unique to you, your life, and your priorities.

*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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Wellness and MS

By Lisa Scroggins

Before I had to start using a walker to get around, I was still working full time, plus I had an hour one-way commute to work. Honestly, I worked far more than the 40 hours a week that counts as full time. But in those days, I used to joke that my healthcare was an additional part time job, in itself. Between going to the clinic every thirty days for an infusion, and handling refills for other medications, as well as the other “normal” things that everyone has to do (teeth cleaning, physicals, mammograms, etc.), it took up too much time, in my opinion.

I had it so easy! Now, it really is a kind of job. After I stopped working, almost three years ago, I told myself that I would dedicate myself to “rehab.” With a lot of other life details that intervened, I didn’t do the best job of rehabbing on my own. There was a little bit of denial; I believe that deep down, I thought maybe without the stress of my job and commute, I would just naturally “get better.” Probably, this won’t be a shock to anyone, but that’s not what happens! It took me awhile to come to terms with my new and unwelcome status. Much of the turmoil surrounding my leaving the workforce, and the other big changes that took place in our lives has calmed and life feels a little bit stable now. And so, my new job/work of rehab has begun in earnest.

I have come to embrace a sort of DIY wellness attitude, as I no longer enjoy a “yes, but” condition, as in “Yes, I have this disease called MS, BUT I can still work, and it is invisible to most people.” It’s plain to see that I’m disabled. After I left my job, I spent a good year and a half traveling to an MS specialty clinic that’s within a day’s drive for me, hoping that maybe there was a “holy grail” that the ordinary neurologist wasn’t hip to. There isn’t. I did learn a lot that I hadn’t known before, and I also learned a hard lesson: not all neurologists, even the specialists, have a decent bedside manner. I had a gut reaction to the specialist  the very first time I saw her, but told myself that as long as she might be able to help me, I shouldn’t worry about the touchy-feely part. I know better, and I’m not sure why I didn’t trust my gut, something I always told my kids to do. I’ve stopped going to that doctor, since her demeanor was so objectionable to me. While I may return to that clinic, it will be to a different neurologist. I’ve empowered myself to only seek out assistance from doctors who seem to care about me, something paramount for mental wellness.

Nowadays, I spend a lot of time reading and researching everything from up-and-coming medications to figuring out new and different ways to exercise. One new issue for me is pain. Except for the occasional flashpoint of trigeminal neuralgia, pain wasn’t an issue for me. In retrospect, this new symptom first started to occur about a year and a half before I stopped working, and if I hadn’t made a note of it, I wouldn’t have realized how it sneaked up on me. What’s worse is that it has continued to develop and progress. In some online MS groups, a lot of people with MS do have pain. Lots of them take powerful drugs to try to control it. As bad as my back hurts at times, I do not want to use a pain-killer, and would prefer not to add any more drugs at all. I have learned that when the pain seems especially bad, what helps me the most is to apply a cold pack. I tried heating pads, and those sticky thermal pads that you can buy in stores. My husband bought a pad that can be used for warmth or cold. On a whim, we tried putting it in the freezer then inserting it in its carrier and wearing it so that it covers my shoulders and upper back. For me, it’s far more effective than any of the heat methods I tried. I’ve gotten so smart that I no longer wait until the pain is excruciating, but actually try to ward it off. I know that my sarcastic attitude doesn’t always help me, but really, why on earth do I beat myself up for not knowing? What matters is that I found some relief. I try to be open to new ways, even if I don’t believe they will help. There are other approaches to managing pain, too. I take a lot more NSAIDS than I used to (usually Aleve or ibuprofen) but have deemed it necessary. I even tried some homeopathic stuff, but didn’t notice any affect at all. What does seem to help is sticking to a schedule of exercise. I know that it’s vital, but it remains a challenge to structure my day around that. The effort to manage my time so that exercise is a priority, yet doesn’t prevent me from doing other things remains a struggle. For example, it’s important to do food preparation, which involves deciding what to eat, making the shopping lists, planning the menus, and actually preparing the food, all of which used to be easy. I’m still learning how to structure my days so I have built-in rest times between tasks, and preventing pain and fatigue that destroy the rest of the day.

The other thing that really is phenomenal is the smorgasbord of information that’s available to everyone, including people with MS: the internet. It’s friend and foe both, and if you’ve dipped your toe into it at all, it’s easy to get overwhelmed. I have found a few resources that I turn to again and again, because I find them to be chock-full of information. My favorite online tool has been “MS News and Views,” hosted by a patient with MS. I am not a fan of watching videos on my smart phone or any other way when it comes to MS; I just prefer to read rather than watch. But what I like about this resource is:

  1. It’s run by a fellow patient and,
  2. Information is available in many ways: MSVN channel on YouTube, with recordings of presentations, E-newsletter, Blog-Talk Radio series archive, a Webinar Series, and much more.  The website is: www.msviews.org. The YouTube channel is called MSViewsandNews Learning Channel. There are presentations about exercise adaptations, nutrition, MRI’s, and medication. I have learned to love watching videos and this website is the reason! Some of the videos are almost as good as a visit to a doctor, in terms of the information and education made available.

Wellness in the context of a chronic, life-long disease may seem oxymoronic, but it’s not. I challenge you to take back some control and avail yourselves of a plethora of self-management.

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Wellness Covers A Wide Field

By Lauren Kovacs

Staying well encompasses physical and mental skills.  Everyone has different needs and tricks.  The key is to find what works for you.  Maybe you choke up on the bat or spit in your glove.

For me, gluten reduction helps me stay ‘well-ish’.  Eliminating it completely caused massive weight loss.  I figured it out when my beloved donuts caused me to be super floppy.  It turns out too much sugar contributed to the wet noodle effect too.

I did therapeutic horseback riding for years.  It improved my gait, when I had one.  After years, I had to give it up.  I was wobbly and I was seriously freaking my Dad out who was my official side-walker.

Turmeric seems to help me be able to walk some. I use a walker in the house to keep my circulation going.  Yoga helps, if you have energy.  I like seated Yoga or I find exercises geared to seniors.  I try to be active while reducing falls by being seated.

I schedule my day of any activity between 9-12. Not ideal, but I am worthless after lunch.  I am in a different body, after lunch.  I take half my “awake” medicine, nap and take the other half to get me through homework time with the kids.  Combating fatigue is like walking a tight rope. One bobble one-way or the other will make you crash.

Be patient with yourself.  We are standing in front of a pitching machine.  It takes a lot of practice and there is a learning curve.  You have to be ready to take a hit too.  Strategy is important.  Sometime you can smack the pitch and others you swing and miss.

Just like selecting your pitches, select how you respond to want MS throws at you.  Days where you strike out miserably are going to happen.  Maybe the pitch hits you and you have a bruise, but you advance to first base.  You now have knowledge about avoiding that situation again.  In my case, I learn to avoid a fall that way again.

Learn to treat yourself.  Cheer yourself on out load.  Positive affirming words to yourself out load can have a big impact.  Just like a cheer squad helps to push a team forward, cheer for team YOU.

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My Wellness Litmus Test & Sphere of Wellbeing

By Stacie Prada

If I distill my health down to a litmus test to objectively judge my level of wellness, it boils down to this: How am I naturally behaving right now?

How I naturally behave is a reflection of the thoughts in my head and how I perceive the world. Am I struggling with something, or am I content?  Am I interacting with other people positively without thinking, or is it taking extra effort to behave in a socially acceptable manner?  Do I respond to inconveniences with frustration or compassion?

When our physical health is compromised and we’re sick, injured or chronically ill, it’s easy to be grumpy.  After a car accident in high school, I lived with a constant headache for five years before having jaw surgery to correct TMJ misalignment. During those years, constant physical pain became normal. There were likely many moments I was grumpy.  But living with pain didn’t preclude the wonderful times I experienced, nor did it override my sense of wellness. It was a part of the experience and something I worked on trying to improve. MS is like that for me. It’s an inconvenience and something I factor in to my daily decisions and life choices. With years of monitoring my health and adapting, MS has become only a part of my experience and not a constant dominating fear.

That said, MS does affect how I feel and can make me feel a little unwell at times.  It doesn’t mean I’m not well. It may just mean I need an adjustment, a slight course correction to stay on the wellness path. Converting the realization that I’m not as well as I want to be can be done by thinking about the areas of my life that contribute to my wellbeing.

When I list them all, the list gets long, and I can overthink it pretty quickly. Thankfully ruminating is an enjoyable hobby for me. I loved reviewing wellness wheel graphics online and seeing how other people explain factors for health.

There are a lot of variations of the wheel of wellness and they can be used as a starting point, but I think it’s important to think about what you care about, not what you think you should care about.

I want to learn, contribute, be active, have meaningful relationships, feel good and look good. I want to be financially stable, have a tidy home and travel. For me being well means I can do at least a little of each without neglecting other aspects of my life that are important to me.

What if someday never comes? And what if it does? For me wellbeing is enjoying life today while planning for a future. The perfect day for me would include rest, activity, relationships, learning, contributing, creativity and celebration.

Look inside yourself, look outside yourself, and think about the mark you want to leave. If I wanted to score wellness for myself, it would be a complex equation with many, many variables. In my attempt to create an equation I visualized a sphere that magnifies based on my areas of health. When I focus on things I can control, say, do or believe, it bolsters my sense of wellbeing. It distracts me from things I can’t control, and it genuinely boosts my mood and love of life.

What would you add for your own sphere of wellbeing?

*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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Do You Live Life in an MS “Bubble”?

We recently shared an article with our MS community about living life in an MS ‘Bubble’.  So many of our community members expressed feeling similarly to the author, Ashley, and feeling like they retreat to a mental hideaway when stress and depression of MS becomes too much to handle.  Their responses were amazing, and we wanted to share some of them!

Preferring the “Bubble” to the Outside World

“The bubble is challenging sometimes, but it’s also safe. There are just some days where challenging myself isn’t worth the risk of falling, dropping things, etc. Trust me to know my limitations. I’m not lazy. I haven’t given up”

“Thank you for giving the perfect title to the place where most of us escape to from time to time as needed.  People may not understand why we retreat to our “bubbles” but they are a safe place for us no explanation needed”

“I also live a lot of my time in a bubble…I sit with my back to everything, and play 1 level of 1 game for hours on my laptop. I tell my husband and son that I need to zone out for awhile and thankfully, they understand”

“I mentally prepare.  No appointments, tell hubby having a recharge day, not doing anything.  Sit, drink tea, watch lots of TV and/or read”

“Being trapped so much is why I’m on social media so much…I miss getting out, but I also really appreciate these online acquaintanceships”

Hiding in Your Bubble Instead of Engaging with Others

“This is just me.  I definitely shut myself away in a bubble—90% of it was my illness, 10% was that I just found it hard to be around people. It’s hard to listen to everyone’s great lives when your own is crumbling around you”

“This is so true. I’m supposed to be meeting friends for lunch tomorrow, but my fatigue levels are terrible just now.  I don’t want to cancel and I don’t want to let people down, but I also don’t want to fall asleep.  It would just be easier to stay at home in my protective bubble”

“Sometimes people can be so cruel it makes me want to run home and stay there. I’m very comfortable by myself now”

Enjoying the Ability to Avoid Responsibilities and Daily Tasks

“Really! It can be challenging just thinking about moving or turning over in bed!”

“This is so right!  People just don’t get how hard it is to do the simplest things.  Like shower, get dressed, and go out.  The first to get done.  Maybe pj’s go back on and stay home is more like it”

“Thank you for saying it!  Get so sick of people saying that going out will be ‘good for me’.  NO it won’t!  It will exhaust me and make me feel ill for days, sometimes weeks!”

“Hermits unite!  Lol!  People with NO energy don’t wanna move…let alone GO somewhere…”

“It’s just easier to stay at home than to get dressed which tires me out more than I can say”

“It’s just easier…I don’t even want to go on vacation”

Not everyone reported feeling safe and comfortable in their bubble, however.  Some of our community members said they even try to fight the bubble as much as possible, and stay engaged and active.  Let us know how you view or use your personal MS bubble, and how it affects your daily battle!

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The Call of the School Supplies

By Lauren Kovacs

We all dread it, as parents.  The school supply trip.  It beckons us and sinks its teeth in.

With three kids, this trap is one I can’t elude or ignore.  I try to do it in one trip, however I usually go to a dollar store first.  A big box store is my final stop.

Going early in the morning helps avoid oppressive summer heat.  My kids are on a year round schedule and it is a must.  I like to avoid the real scary call of the wild by not going later in the day.

I have recruited my little troop of squirrels.  They each are sent into the shelves to finds an item, while I am the list holder.  I busy myself by looking at the new boxes of crayons.  Even though they are past using them, a box always shows up in our bags at checkout.

I coordinate from my wheelchair.  Once they find their nut (supply), it goes into the cart.  After our adventure is complete, I reward them with a treat (candy) and the call of the school supplies is silenced.

There are always random things a teacher wants.  I turn to the net for those.  It saves me a trip out.

Reward yourself.  Buy a muffin or donut for yourself.  It takes work to get those supplies.  Share in the joy of new school stuff by treating YOU.

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Creating Some Order in the Medical Billing Chaos

By Stacie Prada

Medical bills can be daunting to track when a person is healthy and only has a few appointments a year. When a person is injured or has a chronic illness, the number of medical bills and insurance statements that arrive by mail can be staggering. Compounding the confusion is that they’re often confusing to read and understand.  Trying to track them and know which bill has been covered, denied or ignored can be overwhelming. It can also get very expensive if you end up paying for things your insurance should cover.

Keeping a checklist and single filing spot for these medical bills and insurance statements lends some order to the chaos and helps reduce the stress of dealing with financial tasks.  It took me a while to come up with this method, and it has since evolved to a pretty simple method it works for me.

Medical Billing Tracking Example

Medical Billing Tracking Example

I created a checklist to track each visit with information needed to track payment. I use a fresh checklist for each doctor’s visit, MRI scan or lab test since each one may require working with different billing companies.  I print these on 4×6 index cards, but you could use any size paper that works for you. I’ve included a blank Medical Bill Tracking Sheet and one that I’ve filled in as an example in this post.

  1. After a medical appointment, fill in the top of a Medical Bill Tracking sheet with the year, provider and the date the Appointment/service provided.
  2. When a bill or insurance statement arrives in the mail, open it, read it, and add notes to the tracking sheet. Staple the bill or insurance statement to the back of the tracking sheet. Any time a new piece of mail arrives regarding that appointment; staple it to the back of the tracking sheet.  It will build up to a stack of papers that all relate to that appointment.
  3. For an insurance statement, see if it was paid or denied. Often, if it’s denied, they’re really asking for additional information before making a final decision on the claim.  You’ll have a time limit to provide the information, so it’s important to read it and understand what it says.
  4. If you have more than one insurance plan, coordination of benefits can become a part time job. Get used to calling each of the insurance providers to ask who has covered what and what they need to keep processing the payment.  You may need to call the other insurance company or medical provider for information to fax to another company. Be prepared to spend a lot of time on hold when you call. Take good notes and get used to being your own financial advocate.
  5. If you receive a bill from the provider, look to see if insurance has covered anything.  If it’s not listed on the bill, call the provider to see if they’ll bill your insurance. If not, you may need to submit the bill to your insurance company yourself. I’ve often had instances where the bill wasn’t paid by my insurance company, but when I called the provider I was able to confirm my insurance information and have them resubmit the bill to insurance.
  6. Sometimes the provider doesn’t hear back from insurance and will send you a bill for the full amount.  If that’s the case, call your insurance company and ask what the status of payment is. I’ve had providers frustrated that they hadn’t received payment after billing insurance.  One year each time I called my insurance company, the representative would ask questions about the date of service and provider’s billing date before telling me the bill was in process and would be paid next week.  It seemed like a game and too coincidental for every bill, but I just factored it in to the process for moving it along.
  7. Once insurance has paid for medical expenses covered under your policy, you should receive a bill from your provider for any amount you owe.  Make sure it matches what your insurance statement says you owe. If you’re not able to pay it in full, call them and see if they’ll offer a sliding scale or payment plan.
  8. Remember there are national and community assistance programs available for people without insurance or ability to pay for their health care. Call MSAA to see if they offer assistance or if they can suggest another organization that may be able to help.
  9. File all of these tracking packets that have been paid in full and are done in one place. You may need them to confirm payment was received if duplicate bills are sent before they receive payment. If you receive a duplicate bill, staple it to the stack. Don’t throw anything away in case the provider doesn’t apply your payment correctly.
  10. If you talk to anyone along the way, write it on the bill or the tracking sheet. Know and write down the name of the person you talked to, the date, and what was said. Being friendly and knowledgeable goes a long way to clearing up any confusion and getting help from people to resolve any problems.

Things to know about your medical insurance coverage:

  • Deductible amount for each year
  • The out of pocket maximum your policy covers, if applicable
  • If your policy includes a Health Reimbursement Account (HRA) the amount you’ve earned for the year.

Knowing this information will help you anticipate how much money you may need to dedicate to your health expenses each year. I assume I’ll need to pay the maximum out of pocket amount each year, and I budget that amount for the beginning of the calendar year. It’s also handy if you itemize taxes and need to know what you spent on medical expenses during the year.  Another benefit of having your records in order is that someone else could understand the status of your bills if you need someone to step in and assist you.

Keeping my finances in order allows me to avoid a lot of stress and time wasted figuring out what’s been done and what hasn’t. While the instructions for tracking this may seem obvious, it’s nice to be able to go back to the steps and checklist when the volume of paperwork gets overwhelming.

Blank Medical Billing Tracking Checklist

Blank Medical Billing Tracking Checklist

*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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Cut the Deck and Deal the Cards

By Lauren Kovacs

This is a big ticket for those with MS.

We never know what our hand will be. Even frequent shuffling can deal you a bad hand.

Our crystal ball has been smashed.  For me thankfully, I had 18 years of a mild MS course. I was able to work, get married, have kids and mostly be like everyone else.

I had been a college athlete and I never thought that being physically active would end.  As an adult, I took figure skating, did Irish dancing and clogged.  I was always up for something to excel at.

The changes associated with declining mobility are extremely hard.  New ways of doing things became an essential skill.  Sometimes, there is no way to really deal with the physical betrayal.  When it comes to medical equipment, picking fun colors seems to make necessary medical equipment less medical.

Changes can come frequently. Cards are often shuffled and dealt quickly.  First, I started needing a cane.  No big deal.  I bought a blue fish cover for it.  A year later, the walker came into the game.  I made sure to get one in pink with big wheels and a cool frog bag attached.  Then, another hand was dealt.  I needed a wheelchair. Not cool.  I was not happy.

I again figured a purple one would be fun.  Going with devices as non-medical as possible was a good way to deal with that change.  I made them extensions of me.  A little pinch of personality and a little bling can go a long way.  I didn’t fold and stayed in the game.

Last year we took a trip and I needed to bring a walker to use in the cabin.  We flew, so I bought a gray one that folded into a garment bag.  I used duct tape with butterflies to make it fun.

I really hated the idea of using that walker, but people saw the butterfly duct tape.  I was able to enjoy our trip a bit little more.  It was still hard to get around, but I felt less disabled.

Making change fun is the only way I can deal with mobility changes.  A pink walker, a purple wheelchair or butterfly duct tapes were simple changes that were not medical.  Make changes as non-medical as possible, when it comes to mobility equipment.  I was dealt a bad hand, but injecting fun is a simple way to make a bad hand livable.

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Dealing with an Unexpected Change with MS

By Matt Cavallo

Multiple sclerosis is an unpredictable disease. I’ve been living with MS for eleven years now and just when I think I am getting the hang of it, something changes and I’ve got to start all over again. When the change is unpredictable, that is when it can be the hardest. This was the case for me when the results of a recent blood test forced me to reconsider my treatment options.

I have been on the same treatment for the past nine years. During that time, my MS was well controlled. My long term plan was always to stay on this treatment. The reason being that I tolerated the treatment well. The only relapse I had during the previous nine years was when I was unable to receive my treatment.

Then came this summer. As I sat across from my neurologist, I knew that something was wrong. He explained to me that my routine lab work concerned him. He felt that my treatment now presented an elevated risk and that it was time to explore new treatment options. I didn’t know how to react. When I came in for my appointment, I wasn’t prepared to discuss changing to a new treatment.

There were many different emotions that ran through me all at once. The first was fear. I was afraid of the unknown. I knew that I tolerated my current treatment and didn’t experience relapses. There was no way to guarantee that I would experience the same kind of positive outcomes on a new treatment.  Also, would that treatment have the same kind of efficacy that I had become used to over the past nine years? On the flip side, would staying on my current relapse expose me to the risk of a potentially fatal side effect?

In addition to the fear, I became angry and started to blame myself for my labs changing. I didn’t know what I did that was different. I was in disbelief with the results and wanted another test to confirm the findings. I left the appointment in denial thinking that the test was wrong and that my risk was still relatively low, so theoretically I could continue my treatment without harming myself. I told my neurologist that I needed some time to think about it and scheduled a follow-up in two weeks.

During that two weeks, I found myself depressed. A second blood test confirmed my fears. I found myself at the crossroads needing to make a difficult decision. On one hand, I could continue down the same familiar road I had been traveling for nine years, but with an increased risk of a scary side effect. On the other hand was a new road and I was unsure what the future would hold on my MS journey. Then came my follow-up appointment.

I was nervous sitting in the waiting room. Even though I had two weeks to consider my change in treatment, I really didn’t know what I was going to tell the doctor. I just knew that whatever I said was going to result in change. I knew that even if I continued on my current treatment that there was increased risk and with that would come increased monitoring and a new sense of worry that didn’t exist before the lab results.

Once we got past the pleasantries, my neurologist looked me in the eyes and asked if I had made a decision. Without thinking about it, I blurted that I would try the new treatment.

With that, I felt a weight lifted off of me. I finally accepted that I had to change and the only way that I would be successful would be to embrace and accept that change. However, I did need to experience all of those emotions before I was open to accepting the change.

The thing that I learned from this situation is that no change should be taken lightly. Pasteur once said that chance favors the prepared mind. In my case: I evaluated my neurologist advice, took a validation blood test, researched the recommended treatments, talked to my wife and loved ones about the pros and cons, and in the end made an informed decision. This was not a change I wanted to make, but the unpredictable nature of MS thrust this upon me. In the end, I am at peace with my decision and embracing the road ahead.

*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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