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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MSAA Presents S.E.A.R.C.H.™ Live Webinar

msaa-search-graphicWhile having more than a dozen FDA-approved treatments for relapsing MS is very encouraging, learning about the therapies and knowing what questions to ask your doctor can be very challenging. Because of this, the Multiple Sclerosis Association of America (MSAA) created its S.E.A.R.C.H.™ initiative several years ago and recently updated the program with a new booklet, workbook and now an upcoming live webinar!

Designed as a memory aid, the S.E.A.R.C.H.™ acronym represents six key areas that should be considered when “searching” for the most appropriate MS treatment. We invite you to register for our free, live webinar, How to S.E.A.R.C.H.™ for the Right MS Therapy for You!, on Wednesday, October 19, 2016 at 8:00 pm Eastern.

In this live, one-hour webinar, MS expert Dr. Carrie Hersh will:

  • Review the current landscape of MS therapies and those on the horizon
  • Discuss the importance of having a good doctor-patient relationship
  • Explain the S.E.A.R.C.H.™ acronym and how it helps people remember the six key topics to discuss with their physician when deciding on a treatment
  • Provide effective strategies for staying on treatment

Following the presentation, participants can engage in a Q & A session with Dr. Hersh from questions submitted through the S.E.A.R.C.H.™ webinar’s live chat feature. For more information about the S.E.A.R.C.H.™ initiative, please visit our website.

This webinar, along with other recently updated S.E.A.R.C.H.™ materials, has been made possible with support from EMD Serono and Sanofi Genzyme. MSAA is solely responsible for the development of S.E.A.R.C.H.™ and its content.

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Fall Celebrations

fallWell, Fall is finally here even if in most parts of the country it doesn’t feel like it.  Most people associate Autumn with its two main holidays: Halloween and Thanksgiving.  I know that if you were to play a word association game with me, I’d tell you that Fall makes me think of warm apple cider, jack o’lanterns, pumpkin pie, turkey and trick or treating.  All those things are connected to the holidays.

I thought to myself that there had to be more to the season.  Guess what?  There is so much more to celebrate.  I came across a website (http://www.nationaldaycalendar.com/october/) that lists all of the “National Days” that you might hear mentioned on the morning news or radio.  Some are serious, but most are a bit silly.  I, for one, don’t think you can have too much silly in your life.  So, while there were so many for the season, I thought I’d share my favorites for October.

  1. October 4th – National Taco Day. Have Mexican food for lunch or dinner to celebrate!
  2. October 8th – National Fluffernutter Day. Make yourself a peanut butter and marshmallow fluff sandwich.  If that’s not your speed, celebrate National Pierogi Day instead!
  3. October 10th – National Kick Butt Day. This is the day to give yourself a kick in the pants and get yourself moving on something you’ve been meaning to do for a while.
  4. October 12th – National Bring Your Teddy Bear to Work Day. Get all of your co-workers involved and have a slumber party!
  5. October 14th – National Take Your Parents to Lunch Day. Make sure your kids know you expect them to celebrate this day!  And, have the pie or ice cream at the end because it’s also National Dessert Day!
  6. October 17th – National Clean Your Virtual Desktop Day. This might be the easiest cleaning chore of them all! Click and clean!
  7. October 18th – National Chocolate Cupcake Day. Buy yourself a chocolate cupcake as a reward for all of the hard work you did yesterday!
  8. October 22nd – National Nut Day. Peanuts, walnuts, almonds, pistachios…so many nuts and only 24 hours to celebrate!
  9. October 28th – National Breadstick Day. I wonder if Olive Garden knows about this day?  It might be fun (and tasty) finding out!
  10. October 30th – National Candy Corn Day. Finally, a reason to dig into the Halloween candy early!
  11. October 31st – National Knock Knock Jokes Day. Have some fun with the trick or treaters by telling funny and corny knock knock jokes all day.  You’ll have a captive audience because they’ll want the candy!

This website serves as a reminder that there is always something in life worth enjoying.  Plus, there is no law against you creating your own day of fun for your friends and family.  In the end, it’s just important that we, as the website’s motto says, “Celebrate Every Day”.

 

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Dollars and Cents? No, Hours and Minutes

When someone mentions the word budget most people instantly think of dollars and cents. But budgeting our time and commitments is just as much work as budgeting our money, and even more difficult for some (myself included). Budgeting to fit in the pull of work, family, friends, school, volunteer activities, participation in groups… regular sleep hours… it takes a lot. I’m a juggler (not really), but I often fill my proverbial plates with more than I should and from time to time something takes a fall. All the good intentions aren’t enough to always keep things going. The start of fall, with all its changes and starting of new activities and programs has been a good time for me to look at all the things in my life that vie for my attention and decide how best to budget out my commitments. Take stock of the things most important to me and learn to say “No” to those that I just can’t fit into the 24 hours a day I’ve got.

catinthehat-214x300Taking the time to really asses our time and commitments can be more difficult than it sounds. If like me you like to stay busy, be involved and take on new things, you’re looking for ways to do it all. Be at the soccer games and make the deadline, help decorate the hall and run the meeting, work on projects and help a friend pick out their wedding favors. While keeping busy and involved can be exciting and interesting it can also take its toll. Realizing that while we’d love to juggle all the objects that life has to offer, it’s best to decide which of them is most important and put the others down takes thought. It takes being honest with ourselves that we have limits and that our time isn’t infinite. Choosing the activities or tasks that are the most important to us and saying no to others. Budgeting with money is important to make sure the bills get paid and there’s something left over to save. But budgeting our time is important to make sure we have something left over. To ensure we don’t burn the candle at both ends and end up missing things, moments or chances that we’ll regret. Yes, I want to be there for my friends and family, do well at work and help where I can but there are times when not maxing out my budget will save me from running in the red in more than just my bank account.

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MSAA Joins Revlon 2016 Challenge

MSAA is excited to be a part of the Revlon LOVE IS ON 2016 Million Dollar Challenge!  From now until October 26th, MSAA and other organizations focused on women’s health are competing to raise the most money for a grand prize of a $1 million donation to their cause. In addition to the grand prize, throughout the fundraising competition, there will be mini bonus challenges with $1.4 million in additional prizes for the winners of these weekly or daily challenges.

revlon-love-is-onYou can get involved and help MSAA win the $1 million donation to fund our free programs and services including: cooling vests for heat sensitive individuals, MRI assistance, toll-free Helpline staffed by trained specialists, assistive devices, in-person educational events, award-winning videos and publications, and much more.

How You Can Help

Help MSAA improve more lives (and “Love”!) in the MS community today, by spreading the word about the Revlon LOVE IS ON 2016 Million Dollar Challenge!

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Warm Panzanella

MS Conversations Recipe of the MonthAutumn is almost here!  The air is getting cooler and the leaves are starting to fall.  When you go to the store, it seems that everything is apple or pumpkin spiced. Fall is a great time to make delicious dishes, savory sides and fruity desserts that will warm your heart and soul. Below is a recipe idea that is easy to make and is delicious to eat as a side dish or even a meal.

Ingredients:

Butter, for greasing and to dot the top
1/4 cup olive oil
2 cloves garlic, thinly sliced
2 peppers-any ones you like (the sweeter the better)
1 red onion, chopped
1 pint cherry tomatoes
Salt and pepper
8 eggs
1 pint cream or half-and-half
1 1/2 cups grated Parmesan cheese
1/4 cup fresh flat leaf parsley, chopped (you can also use dry herbs)
Small handful fresh basil leaves, torn or sliced  (you can also use dry herbs)
6 cups chopped or torn stale bread

Directions:

  1. Grease a casserole dish with some butter, set aside.
  2. Heat a large skillet over medium-high heat with the olive oil. Add the garlic, peppers, and onions together and then stir.
  3. Cook until tender, about 5 minutes.
  4. Add the tomatoes and season with salt and pepper.
  5. Remove from the heat and cool.
  6. Whisk together (in a separate bowl) the eggs, cream and half of the cheese, add parsley, basil and some more salt and pepper.
  7. Layer the bread and cooled vegetables in the casserole dish, it will mound up a bit. Pour the egg mixture over top of the casserole and top with the remaining cheese.
  8. Add a few dots of butter.
  9. Cover and chill overnight.To serve, bring the casserole to room temperature. Then bake at 375 degrees until cooked through. It will need to cook for about 1 hour. Serve warm.  Serves 6-8 people.
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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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Special Swim for MS Swimmer Honored by the Military

Almost all of our Swim for MS participants have had some kind of personal connection to multiple sclerosis – whether a family member was diagnosed, a friend, or they themselves have MS.  In this way, Team DragonFLY Captain, Courtney Evers, is no different.  When her mother was diagnosed in 2005, Courtney and her family turned to MSAA for information about MS.  After spending years on our website using MSAA resources and repeatedly seeing information about our Swim for MS program, Courtney decided to start her own.  “It was something I could not only do for my Mom, but that she could be a part of, too,” says Courtney.

Courtney’s mother (left) swam the most distance of the team last year!

Courtney’s mother (left) swam the greatest distance of the team last year!

What does make Courtney Evers different from other Swim participants is that she was recently awarded the Military Outstanding Volunteer Service Medal for her volunteering efforts, including her years as the captain of her Swim for MS events.  Since 2011, Courtney and her teams have raised more than $7,500 for the MS community by swimming in New York, Hawaii, and everywhere in between.  When asked about receiving this special honor, Courtney said:

“The Swim for MS part of my MOVSM was by far the most meaningful, because it was something that really ‘hit home’.  Not only was my team helping raise awareness, but the funds raised were actually going to those that needed it with MS.”

Please join MSAA in thanking Courtney for her service to her country and for her commitment to the MS Community and improving lives today!

unnamedTo learn more about starting your own Swim for MS, please visit SwimforMS.org.

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Is it That Time of Year Already?!

school-bus-back-to-schoolSo this week marked the start of many students heading back to school and the unofficial ‘end’ of summer with the fall season being just around the corner. This time of year usually generates many nostalgic feelings; how it felt having to go back to school, which was sometimes a drag at first but eventually turned into excitement to learn new things, the change in routine and schedules, and the countdown to the holiday season. Even just the colors and smells of fall have the potential to bring about joyful feelings—it can be a very pretty and festive time of year.

For some people this week may represent new beginnings and changes, for others it may signify an anticipated change of season with teasingly cooler temperatures being just around the bend (hopefully). For others it may just represent a hope for change and new things to come. This particular week and time of year doesn’t necessarily look or mean the same to each person and it doesn’t have to; everyone goes through different things at different times and holds unique perspectives towards it. It’s more about finding what is special or important to you and holding onto that—knowing what feelings are prompted or what memories are beckoned when you experience time and season changes during the year. It’s a chance to create new memories, make adjustments to change, prioritize your needs, and most of all, to self-care—because there is only one you, and you deserve the most that time has to offer.

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