Fatigue and Insomnia – Community Feedback

Posted on August 31, 2015 by MultipleSclerosis.net

Fatigue is one of the most common symptoms among those with MS, but this fatigue is not the same as just being tired. And to make matters worse, it’s possible to be completely exhausted but unable to sleep. Our amazing contributor, Ashley Ringstaff, recently wrote an article called “Extremely Tired….but Can’t Sleep.” She says, “I can be completely exhausted where I can’t do a lot, I have no energy to even move all day, and when it’s finally time for bed, I will lay there hoping I will get some much needed sleep. But sometimes, that’s not the case.” As it turns out, many of our community members could relate to Ashley’s story. Here’s what they had to say:

I find that I’m always tired but have trouble sleeping at night

I need naps in the afternoon and then can’t fall asleep at night. I seem to wake up at 3:00am almost every night. I’m lucky if I sleep more than 4 hours at a time. It’s very frustrating, but at least I don’t have to get up for work.
This has been a new symptom for me in the last 12 months it is driving me crazy. I take trazadone for sleep, and it has worked for over 20 years but it doesn’t seem to work anymore. The summer also seems to make it worse. I am barely functioning during the day.
                   I haven’t slept more than a few hours a day for the past 6 months. I can feel the effect on my whole body.
MS has given me insomnia.
This happens to me all the time. I used to sleep 10 hours a night, anywhere, anytime! I miss that so much. But even getting some sleep now does not mean feeling rested.
This was me last night. I was tired but up until 5:00am, then slept until 9:30am. I’m exhausted but my body is ready to party.
  ‪This is me exactly! One reason I had to leave my job was because I was falling asleep around 3pm. At night my mind goes 100 miles per hour, so hard to shut it off but during the day I can’t remember what I was doing.
I’ve gone 7 days now with only 15 hours of sleep. In my opinion, this is this is the most irritating part of this disease.
People don’t believe me when I say how tired I am. They just don’t understand.

Even when I do sleep, I’m exhausted

I slept 10 hours last night and woke up exhausted. I spent the day riding around with a friend looking for yard sales. My body is so tired my legs don’t want to work now.
I think I sleep well for a while, and then I wake up. It takes hours for me to fall back to sleep, but I wake up every morning fatigued, and some mornings dizzy and disoriented.

I’ve found a few methods to help with my insomnia and fatigue

Meditating can help to “shut off” your brain when you’re trying to go to sleep.
I have tried multiple drugs, techniques, yoga, baths and meditation. I exercise frequently too, which helps when I am up for it.
I have had this on and off since being diagnosed in 2004. Some things that might help include taking a warm shower or bath a little before bed time or using a little lavender essential oil on your chest.
I only get about 5 hours a night if I’m lucky. I lay down at 11 30 but my brain won’t shut down. I read and listen to music to relax enough. Last night I had to take my lorazapam to finally fall asleep at 3am.
I’m lucky to get 5 hours of continuous sleep any night. I have done the sleep study. I lost significant weight some years ago, which resolved the sleep apnea. I take naps when the fatigue has taken its toll. I have accepted insomnia as my normal. I find it easier to work with it than to fight it. I do some of my best work at 0 Dark-Thirty AM.

What about you? Do you have trouble sleeping despite being tired? Share with us in the comments!

Do the Patient Billing Double Check

Posted on August 28, 2015 by MSAA

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/

Budget Friendly Food Tips

Posted on August 26, 2015 by Melissa Young

Although we all need food and we shop for groceries, the food budget is the easiest place to save a few bucks. Even the cheapest restaurants add up fast too. Next time you are thinking about eating out or spending money at the grocery store on items you don’t need, think about these simple tips:

Eat at home. While it’s a nice treat to go out to eat once a week, it can get very expensive if you do it much more than that.

Buy store brands. It’s sometimes very difficult to tell the difference between store and name brands. Why pay a premium for the name brand when the store products are so similar.

Shop with a plan. You are less likely to buy things you don’t need if you’ve made a shopping list ahead of time.

Clip coupons. They’re basically free money. Stores and companies are paying you to try their products. Take them up on their offer.

Skip the fancy latte in the morning and brew at home.

Buy produce in season. Prices tend to be lower when there is a large supply of something.

Brown bag it! It’s much cheaper to prepare your lunch at home and take it with you than it is to buy it every day.

Obviously, we need to eat to live. But, depending on where and when you buy it, food can take a big bite out of your budget. These are some easy tips you can do to keep your spending down without making big sacrifices.

As they say “time is money”. If you take some time to follow some of these tips, you may save some money!!!

Insurance Open Enrollment is Fast Approaching

Posted on August 24, 2015 by MSAA

Open enrollment is fast approaching! November 1, 2015 marks the first day to enroll in a 2016 Marketplace health insurance plan.

During the 2015 open enrollment period 11.7 million people had enrolled in a Health Insurance Marketplace plan. While many of these enrolled individuals will continue with their selected plan, if you are unhappy with the insurance plan purchased for 2015, the open enrollment period exists to allow those who had previously purchased health insurance through the marketplace to make a change to their current plan. Maybe your doctor has changed, or you would like to try a new MS treatment. Searching for plans that match your needs can easily be completed using the Healthcare.gov Marketplace.

From November 1st, through January 31st 2016 individuals can make changes to their current plans. While the changes made do not take effect until January 1st, this provides individuals with the time needed to make a decision on which plan will work best for their needs.

For those who are new to the Marketplace and purchasing insurance for the first time, MSAA’s Health Insurance Guide, is a valuable resource aimed at assisting the MS community with understanding the many details surrounding today’s health insurance options. Using the PLAN Ahead model (Prepare, Look, Analyze, and Name), MSAA’s Health Insurance Guide provides a comprehensive overview of what should be evaluated when purchasing a plan.

Still confused about the Affordable Care Act, or how the Insurance Marketplace affects you? MSAA has created an informative webinar to better explain the process titled What You Need To Know About The Affordable Care Act. Additional webinars can be found within the MSAA Health Insurance Guide, including The New Insurance Marketplace and MS .

References:
http://kff.org/interactive/mapping-marketplace-enrollment/

Financial Wellness and Multiple Sclerosis

Posted on August 21, 2015 by Samantha Schech

It is known that stress can have a negative impact on MS symptoms. While individuals may try to manage stress in their lives through exercise, meditation, or positive thinking; financial stress is something that is often swept under the rug and ignored. While ignoring the issue may alleviate the initial stress of thinking about financial matters, in the long run it is not a successful practice and often allows the financial matter to come back more stressful than the last.

Talking about money is tough, especially for those with limited incomes; but not talking about money can do more damage than good. Understanding and truly evaluating your financial situation is a great way to develop a financial plan. Awareness of the in’s (income) and out’s (expenses) can be eye opening!

The Multiple Sclerosis Association of America (MSAA) and National Disability Institute (NDI) collaborated on a series of informational webinars to assist the MS community in learning about strategies to protect and improve their financial well-being.

Through the webinar series, topics such as ‘Being Money Smart’ and ‘Working Towards Financial Wellness’ are discussed. For each topic, you can view the archived webinar and download a PDF version for future use and reference. Information can be found right on MSAA’s website at https://www.mymsaa.org/manage-your-ms/videos/financial.

https://youtu.be/AFfsyL9JO4o

What strategies have worked for you in evaluating or creating a financial plan?

Insurance and Planning with Multiple Sclerosis

Posted on August 19, 2015 by MSAA

As we highlight and discuss various insurance related topics this month, we wanted to share some additional material that has been written over the years to continue to educate the MS community and to continue the thought process around planning with MS.

In Planning for the Future: Long-Term Care and Advance Directives a difficult topic is discussed around end-of-life care and making arrangements for a nursing home while still relatively young and relatively healthy. While the topic of advance directives can be a morose one, it is important to at least discuss your wishes with your family. Unfortunately, we do not have a crystal ball to tell the future, but having a plan can at least ensure your well-being.

“Nobody ever really wants to think about what needs we may have in the future, but there comes a time when each of us should consider what future plans we would like to make if challenging circumstances do arise.” In the Advanced Planning blog from 2012, we continue the discussion of planning with MS to discuss how examining issues before they arise provides control over our wishes.

For some individuals, there may be a time when MS symptoms create change that requires additional assistance in the home, to try to help manage daily activities and duties of the household; Getting Help at Home When You Have MS discusses the various types of supports to individuals in their homes, and ways to navigate the assistance.

Continue to check back with the MS Conversation blog this month for more helpful information and guidance.

What To Do If You’re Uninsured

Posted on August 17, 2015 by Angel Blair

We know that life can be very unpredictable at times and no matter how much we try to anticipate obstacles and changes, there may be times that we find ourselves in unfamiliar territory, not knowing how to navigate the shift. With these changes sometimes come circumstances where one might find themselves without health insurance coverage for much needed medical care. It’s important to know where to go to try and find help with continued medical care needs.

If you’ve experienced some type of life change, like the loss of a job, moving to a new location, or getting married or having children and you find yourself uninsured, you may qualify to enroll in a Special Enrollment Period through the Health Insurance Marketplace to see if you can obtain healthcare coverage outside of the open enrollment deadline.

Local hospital systems sometimes offer financial assistance programs called ‘charity care’ to help those who are uninsured with medical costs accrued through the hospital. You can contact the hospital’s financial billing office for information on this assistance to see if you qualify to receive care from doctors and services provided through the hospital.

You can also try to access primary/general medical care follow up through federally qualified health centers in your area that work with individuals who are uninsured. These centers offer different services that include primary healthcare, dental care, women’s health services and routine immunizations, and physical exams. For those without insurance, a sliding fee scale payment option (based on your income and ability to pay for services) is sometimes available through the centers.

For possible help with medication costs, you can contact the manufacturer of the medication directly for information on any prescription cost assistance programs they provide. The MS Disease Modifying Therapies also have patient assistance programs that help uninsured clients by providing information and guidance for cost assistance they may qualify for with the treatment. By working with these different resources, uninsured individuals can try to continue maintaining their medical care and follow up.

Long-Term Care Insurance

Posted on August 14, 2015 by Melissa Young

Have you looked into a Long-Term Care insurance policy?

Long-Term Care refers to help that people with disabilities or chronic, long-lasting illness need over an extended period of time. The type of help needed can range from assistance with simple activities to care provided by nurses, therapists and other professionals.

Some services that might fall under long-term care insurance are:

• Providing you with assistance in your home with daily activities, such as meals, eating, bathing, and light housekeeping
• Nursing home coverage
• Helping with the cost of assisted living facilities
• Visiting nurse in the home or a certified nursing assistant
• Assistance with personal shopping needs
• Adult day care services
• Home modification
• Care coordination

Without a long-term care policy you could spend your savings rather quickly. So purchasing long-term care is important, but it can seem like a daunting task. It doesn’t have to be if you follow some easy steps.

1. Ask a family member/friend to help you if you are overwhelmed with the process.
2. Decide on which services are most important to have covered.
3. Take your time; don’t be pressured by anyone to make a quick decision.
4. Check your current insurance policy to see what is covered.
5. Check with at least 3 insurance companies about the long-term offerings.
6. Research the different plans available in your price range.
7. Get written copies of any policies you are considering and read them carefully.
8. Review everything one last time before signing on the dotted line.
9. Always pay your premiums with a check payable to a company not a person to prevent fraud.

Make the decision that is right for you and that will give you peace of mind.

Life Happens is a non-profit organization that can also explain Long-term Care coverage for you. Please check out their website here.

Dental and Vision Insurance

Posted on August 12, 2015 by Samantha Schech

This month as we focus on health insurance, it is also important to discuss two of the often underinsured areas of healthcare, dental and vision services. While we understand the importance of dental hygiene and multiple sclerosis, many individuals still don’t receive the much needed care.

Dental insurance plans can be purchased through the health insurance marketplace as a stand-alone insurance during open enrollment OR if you are planning to make changes to your health insurance plan for the 2016 year, a plan can be selected that includes dental care. Unfortunately, if vision coverage isn’t part of your health insurance plan, it cannot be purchased through the marketplace. To learn about available stand-alone vision plans, contact your state’s Department of Insurance, or a local agent or broker.

Check out the following tips on how to find dental care for the underinsured:

Check for a local federally qualified health clinic which offers dental services. To search for a health clinic, use the HRSA website.

Look into local dental schools. Most of these teaching facilities have clinics that allow dental students to gain experience treating patients while providing care at a reduced cost. Experienced, licensed dentists closely supervise the students

Dental Lifelines Network offers information about free dental services in the area for those that qualify. You can look up information about your state’s program on the program’s website: http://dentallifeline.org/

Dial 2-1-1 and connect with your local United Way. You may be directed to free or reduced cost dental services

Check out the following tips on how to find vision care and eyeglass services for the underinsured:

VISION USA, coordinated by the Optometry Cares – The AOA Foundation, provides free eye exams to uninsured, low-income workers and their families. For more information about VISION USA, call 1-800-766-4466.

Lions Clubs International provides financial assistance to individuals for eye care through its local clubs. You can find a local Lions Club by using the “club locator” feature on the organization’s website.

New Eyes provides free eyeglasses to more than 8 million people in the U.S. and around the world. For more information about New Eyes, call 1-973-376-4903 or visit the New Eyes website.

EyeCare America, a public service program of the Foundation of the American Academy of Ophthalmology, provides free eye exams for qualifying seniors. To see if you qualify, please visit the EyeCare America website.

Medical Necessity: Advocating For Needed Treatments

Posted on August 10, 2015 by MSAA

By: Meagan Freeman

As a Nurse Practitioner, I became extremely familiar with dealing with the often-frustrating denials by insurance companies, particularly when it comes to prescription drugs. After all, I am the one who holds the professional medical degree, and I am the one who should be determining what treatments my patients required, not an insurance adjuster.

The problem is, insurance companies often have a policy of “automatic denial” for expensive prescription drugs. This policy means that no matter what the circumstance might be, they will always issue a denial when an expensive medication is ordered. This policy may be a deterrent for new providers and patients, and may lead to an unnecessary change in treatment, opting for a less expensive drug that is less effective.

When dealing with insurance companies, my experience has led me to realize that it is incredibly important for providers to immediately argue the case, rather than to simply accept this automatic denial of needed treatment. I often find that a simple phone call to the insurer, with my insistence that the treatment was a medical necessity, and that no other alternative would be acceptable, is all that is needed for an eventual approval. These automatic denials are in place in order to save unnecessary expenses for insurers, whose main focus is always the bottom line. These are not medical professionals on the other end of the phone, and their opinion is not more important than your treating provider’s.

With the new affordable care act, all insurers are required to offer at least one covered medication in each disease category, and cannot deny patients needed medical treatments. Thankfully, no patient can be denied for coverage any longer due to a pre-existing condition such as MS. Our illness is one of the most expensive diseases to treat, with drug prices often exceeding $50,000 per year. This means that we need to become very skilled at advocating for ourselves as patients. If you are told that a necessary treatment was denied by your insurer, let your provider know that you would like them to make a call and argue the medical necessity of the treatment. A simple phone call is often enough to sway the initial opinion, and this simple step is well worth the time if it leads to coverage for a needed multiple sclerosis treatment. If your provider will not take the time to appeal a denial, you may need to consider finding a new provider. Your provider should always be your advocate, no matter what the circumstance may be.

*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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