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World Psoriasis Day Is October 29: A Global Day Of Recognition For The Nation’s Most Common Autoimmune Disease

2014 October 28

pf-useBy Guest Blogger Noe Baker, public relations manager, National Psoriasis Foundation

Held each year on Oct. 29, World Psoriasis Day is a global day of recognition for the 125 million people worldwide with psoriasis. Conceived by patients for patients, World Psoriasis Day gives a unified voice to people with psoriatic disease, so they can have the attention and consideration they deserve.

World Psoriasis Day highlights the serious physical, emotional and financial burden of psoriatic disease and shines a spotlight on the need for more research, better treatments and a cure.

Learn more about psoriasis at www.psoriasis.org.

Why is World Psoriasis Day important?

Psoriasis—a painful, chronic disease that appears on the skin, causing it to crack, itch and bleed—is the most common autoimmune disease in the country, affecting 7.5 million Americans.

Up to 30 percent of people with psoriasis develop psoriatic arthritis, an inflammatory arthritis that attacks the joints and tendons.

People with psoriasis are at greater risk for heart disease, heart attack, stroke, diabetes, obesity and metabolic syndrome. In fact, people with severe psoriasis are 58 percent more likely to have a major cardiac event and 43 percent more likely to have a stroke.

In addition to the physical impact, psoriasis has a profound effect on people’s quality of life.

People with psoriasis are twice as likely to be depressed as the general public. They’re more likely to have low self-esteem and increased suicidal thoughts. Psoriasis is not contagious. Yet, because of its visible nature, people with psoriasis also are discriminated against in public, and children with psoriasis are more likely to be bullied.

Psoriasis also puts a huge financial burden on many individuals. Data from the National Psoriasis Foundation shows that despite having insurance, the majority of people with psoriatic disease spend greater than $2,500 in out-of-pocket costs per year treating their psoriasis (on top of their monthly health insurance premiums).

Copayments for biologic drugs and phototherapy, two commonly prescribed treatments, can be upwards of $600 per month. Learn about financial resources to help with your medication.

If you have psoriasis or love someone who does, visit the National Psoriasis Foundation website on Oct. 29 to learn more. Connect with others, get practical advice and gain support for psoriatic disease on Facebook and Twitter.

My #DAMPersonal Story With Essential Tremor

2014 October 20

DAMBy Guest Blogger Kathleen Welker, president, Tremor Action Network (TAN)

You never forget the onset of a chronic condition; the sequence of going from being healthy to having irreversible and progressive symptoms.

It was 1986, and I was getting over strep throat. Standing in front of the bathroom mirror, I noticed my head moving abnormally. My first thought was, it’s a temporary side effect of medication. When it didn’t go away, panic set in.

Fast forward to the diagnosis of essential tremor (ET), the most common movement and tremor disorder that is now thought to be a degenerative disease, affecting the lives of over 10 million Americans. I remember the neurology specialist sharing, “It’s nothing; just act like Katharine Hepburn,” the Academy Award actress who exhibited visual symptoms of head and voice tremors. My response was, “But I’m not her. I can’t act!”

The stigma of being different took an emotional toll. ET contributed to the dissolution of my marriage and unkind remarks from friends.  I didn’t know anyone with ET. It would be 11 years before I did.

Through the International Essential Tremor Foundation, I started the first support group in the San Francisco Bay area. What a relief to see a mirror of me at the initial meeting. A year later, I co-founded the first online support group with Frank, a patient from Texas.

In 2003, we formed an online weekly chat that sparked a weekend in the Great Smoky Mountains with chat friends Jan and Jennifer, who discussed offering patients more options.

TAN, a nonprofit headquartered in California, was founded in a Tennessee log cabin! Two more people, Ann and Hok, joined the original board of directors that represented ET, dystonia and Parkinson’s patients.

Two of the board members were applying for SSDI. TAN didn’t know of Allsup, only paralegals and attorneys that took two years or longer to obtain SSDI decisions. A new online member, Mary Jane from New York, shared what a breeze her 2006 SSDI appeal had been with Allsup representation. With Allsup’s assistance, TAN added SSDI eligibility as a service

TAN’s Facebook page describes the organization as providing boutique one-on-one support and guidance. Thanks to Allsup, TAN services include Medicare and mental health. Our motto is: We can help you, with or without a diagnosis!

I never learned to act like Kate Hepburn. TAN and 17 years of great friendships with tremor patients helped me to accept who I am—ME regardless of ET!

My #DAMPersonal Story With Advanced/Chronic Lyme Disease

2014 October 16

Lyme-blogBy Guest Blogger Margaret Weiss Behrns, written in October 2011, but never before published

The other day a high school soccer player asked me on a date. It was pretty funny as I am almost 42. I guess I didn’t look sick that day! What if he knew I have to take powerful antibiotics to keep my worst symptoms at bay, or that I have to get all kinds of treatments, adjustments and physical therapies? If he knew the life I was living (not to mention my age) he would run for the hills!

Most people can’t understand what I’m going through because the disease I’m fighting is invisible.

  1. Advanced/chronic Lyme disease is not recognized by the Centers for Disease Control and Prevention, the Infectious Diseases Society of America, the American Medical Association, or the dozens of physicians patients typically visit before being diagnosed.
  2. Current testing methods have such a high rate of false negatives that Lyme and co-infections are often missed.
  3. There are few clinical trials and no standard protocols.
  4. Public awareness and education are severely lacking.

This invisible illness is leaving multitudes vulnerable, misled, and misdiagnosed every day. Advanced/chronic Lyme disease does not exist. Yet somehow, it is killing me.

You Don’t “Look” Sick

I don’t look sick most of the time. You can’t see the pain in my muscles, or the spirochetes dancing in my nervous system and drilling through my cartilage, bones and brain. These smart spirochetes evade my white cells and antibiotics. This experience has made me invisible: It has prevented me from getting out there, living my dreams, and being the wife, mother, friend that I wish to be.

Becoming “Visible”

Some people do see me. They see what I go through to try to live a normal life. They witness my determination, my teeth-gritting attempts to work out, my back pummeled in physical therapy, my feet taped at the chiropractor’s office. They see my absences from dance class and give me hugs when I return. Their faces hold no skepticism, judgment, confusion, doubt or blame. These are the people who piece me back together, inspire me to keep going, share their own struggles, and mean so very much to me.

I’ve done one of the most important things anyone with a chronic illness could do—I have found something I love that keeps me going in a very positive way—a dance class called Zumba. I’ve also become a presence in my neighborhood. When kids are bitten by ticks, I talk to their parents. I keep them out of the tall grass and check them if they’ve been climbing trees. Sitting on my front steps with other mothers enjoying our community has become one of my favorite ways to be visible.

There is nothing like connecting with other people, whether in person or online, who are going through the same thing. And that’s my #DAMPersonal story.

It’s Medicare Open Enrollment Time—Again

2014 October 14

Tricia-blog-photoBy Tricia of Allsup

Like a well-oiled seasonal timepiece, the World Series and cooler weather are approaching.

So is Medicare open enrollment season.

Medicare’s annual election period runs from Oct. 15 through Dec. 7. This is when millions of Americans should take a close look at their Medicare plans to see if they still meet their healthcare and financial needs in 2015.

Although Medicare provides great savings, it’s so complicated that many people don’t fully understand how to take advantage of the program. For example, many seniors don’t learn that their costs will be higher next year or that their doctors or providers are no longer covered by their plans until it’s too late.

Fewer than 5 percent of seniors anticipate changing their plans each year, and that means millions of Americans won’t be enrolled in the Medicare plans best suited for them.

Here are a few things to keep in mind as you review your Medicare options:

  • Medicare Advantage premiums are rising. The predicted average premium increase for Medicare Advantage plans will rise by $2.94 to $33.90 per month, according to the Centers for Medicare & Medicaid Services (CMS). The standard Part B premium, however, will remain the same at $104.90 per month.
  • Prescription drug coverage may change. Part D prescription drug plan premiums, co-pays and deductibles may change, so take a close look at your plan changes for next year. CMS reported that the Part D base beneficiary premium will be $33.13 in 2015, compared to $32.42 in 2014.
  • Donut hole coverage shifts. The prescription drug coverage gap, or donut hole, will be different next year. For example, the Part D initial deductible increases to $320 from $310. Also, the initial coverage limit increases to $2,960 from $2,850. The discounts during the donut hole also are higher in 2015 for both brand and generic drugs. Eventually, the donut hole will be eliminated by 2020 because of the Affordable Care Act.
  • Providers may make changes. Physicians, specialists and hospital networks can shift their participation among Medicare Advantage plans, so it’s important to check your coverage for next year—to make sure you can access the healthcare you need and want.

These are just some of the basics to consider this Medicare annual election period. If you are wondering, “How do I choose my Medicare for next year?”—give one of our Medicare specialists a call.

You can reach the Allsup Medicare Advisor® for help with your Medicare plan questions at (866) 521-7655, or visit Medicare.Allsup.com.

Get Personal During Disability Awareness Month in October

2014 September 30

Wayne-ConnellBy Wayne Connell, founder and president, Invisible Disabilities Association (IDA)

Editor’s note: Post your personal story on Allsup’s Facebook page to raise awareness and be eligible to win $100 gift cards

It all came crashing down in 1991. First, her legs became paralyzed. Then, she received a diagnosis of primary progressive multiple sclerosis (MS), followed by a 10-day hospital stay. She slowly regained the use of her legs, yet the bone-crushing pain, fatigue and cognitive impairments did not dissipate.

I met Sherri in 1992. I was smitten. Other guys who had been interested in her disappeared when they heard the words, “MS” and “disabled.”

I was not deterred. I fell head over heels in love. She had been a model, an actress, a singer with the voice of an angel, a cheerleader and someone everyone liked and respected. To me, she was still all of these and more. She was funny and intelligent, earning two college degrees, caring and loving of others.

Shortly after we started dating, Sherri was diagnosed with late stage chronic Lyme disease, traced back to a tick bite at age 14. She had been sick on and off since then, but no one knew why. She was still active, passionate and hard working until her body finally gave out when she was 27 years old in 1991.

We married in 1994 and Sherri started writing about her journey. She wrote about MS to explain her illness to family and friends. She wrote about how people didn’t understand why someone who appeared normal was allowed to park in disabled parking. She wrote about how appearances do not always tell the full story. In 1996, she thought of a term that described her condition―she had an “invisible disability.” In 1977, I posted some of her writings on a website. IDA was launched.

I had no idea that hundreds of thousands of people around the world were dealing with illnesses and pain, and people who did not understand or believe they had a disability because of the invisible nature of their symptoms.

Along with my wife, I wrote the book, “But You LOOK Good – How to Encourage and Understand People Living with Illness and Pain.” IDA has distributed more than 28,000 copies worldwide. We continue to grow and support people around the world. IDA comforts and encourages those living with illness and pain by letting them know they are not alone.

You can do the same, by sharing your personal story on Allsup’s Facebook page during Disability Awareness Month (DAM). Whether you have a visible or invisible disability, or love someone who does, your voice is valued. Start your post with #DAMPersonal, and each week in October, your comment could earn you a $100 gift card. Your posts will also help raise funds for IDA’s education programs.

Editor’s note: Please click here for the #DAMPersonal program description. Click here to post your personal story to Allsup’s Facebook page.

Let’s Join Forces For Lupus Hope And Help

2014 September 19

board-Tierney-LerslieBy Guest Blogger Leslie Tierney, Vice President of Operations/Patient Navigator, Lupus Foundation of America, Greater Ohio Chapter

I am a registered nurse and have been dedicated to the Lupus Foundation of America, Greater Ohio Chapter, for 16 years. My mother-in-law has lupus and she has been a great teacher. I have learned through her experiences and struggles of battling lupus.

It is because of her that I have a greater understanding of lupus. I have made it my personal goal to assist those affected by this debilitating disease.

The Greater Ohio Chapter is leading the way in patient services and programs. This past July, our chapter was recognized nationally for our New Patient Education Class. This program has the Lupus Foundation of America’s stamp of approval and was awarded the National Lupus Education and Support Services Award.

The award-winning program is held on a monthly basis in five different locations, throughout the state of Ohio. This class is open to the public and is geared toward patients and supporters to gain a general understanding of lupus and to teach patients how to better self-manage their chronic illness. The goal is to improve the quality of life for all of those affected by lupus.

Improving The Lupus Journey

My mother-in-law was misdiagnosed for over 15 years. She described those years as “lonely” and “misunderstood.” Today, it does not have to be that way.

By seeking help from the Lupus Foundation of America, Greater Ohio Chapter, the journey of a lupus patient does not have to be a lonely one. We have the tools and skills to help guide anyone open to learning. By contacting the Lupus Foundation of America, Greater Ohio Chapter, patients move one step closer to receiving the support and education that they deserve.

The foundation has recently changed our tag line to “Help Us Solve the Cruel Mystery.” This message encompasses the initial struggles a patient undergoes before diagnosis.

The mystery is that we still do not know the cause of lupus and we do not have a cure. We do have hope and people who are dedicated to solving the cruel mystery.

The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact.

Through a comprehensive program of research, education and advocacy, we lead the fight to improve the quality of life for all people affected by lupus.

Please share this blog post with everyone you know.

It is estimated that 1.5 million Americans have lupus. Improving their quality of life is at the head of this organization. By sharing you will be helping to solve the cruel mystery of lupus. Please help us help those who feel “lonely” or “misunderstood.”

Should You Try A Medicare Advantage Plan?

2014 September 18

Medicare-blogBy Tricia of Allsup

In just weeks, about 54 million people have the opportunity to make new Medicare choices for 2015. Medicare’s annual open enrollment period runs from Oct. 15 to Dec. 7, with plan choices taking effect Jan. 1, 2015.

One of the more common questions we get through the Allsup Medicare Advisor® is: Should I try a Medicare Advantage plan?

Like many choices in life, our answer is: It depends.

I can explain some of the reasons that people take a closer look at Medicare Advantage plans.

Reasons include:

  • They want to receive all their coverage through one plan. Medicare Advantage can combine traditional Medicare Parts A, B and D—which are hospital, medical and prescription drug services, respectively—into one plan. This means that you have one insurance coverage provider for your health claims.
  • They want the predictability of a cap on their out-of-pocket costs. Medicare Advantage plans typically include an out-of-pocket maximum expense that beneficiaries can expect to pay. In 2014, the average out-of-pocket limit was estimated at $4,797.
  • They want more options for reducing healthcare costs. Many people buy Parts A, B and D, as well as supplemental coverage, or Medigap. Getting coverage in the form of four separate plans can add up. Some people may find that one Medicare Advantage plan has comparable coverage for less. However, your options will vary depending on where you live.
  • They take a number of prescription drugs. Medication can be a big part of your healthcare costs. Some seniors find a Medicare Advantage plan with drug coverage provides them with more cost savings.
  • They would like some additional benefits such as dental and vision coverage. Medicare Advantage plans can offer some additional features that may not be provided with traditional Medicare. Options vary depending on where you live.

A few years ago, predictions were that Medicare Advantage enrollment would decline. But it’s clear seniors and people with disabilities are finding positives to choosing this path to Medicare coverage.

Compared to four years ago—there are 3 million more people enrolled in Medicare Advantage plans. The total was nearly 16 million participants in 2014, which is 1 in 3 of all Medicare beneficiaries.

If you are interested in your options, then get ready for Medicare annual enrollment. It starts soon: Oct. 15. If you’d like to get a jump on your Medicare plan choices this year, contact a Medicare specialist at Allsup Medicare Advisor® at (866) 521-7655.

You also can visit Medicare.Allsup.com to fill out an online form and reach a Medicare specialist.

NFMCPA: Stigma Persists For People With Fibromyalgia, Chronic Pain Conditions

2014 September 9

Jan-ChambersBy Guest Blogger Jan Favero Chambers, president and founder, National Fibromyalgia & Chronic Pain Association

Despite increased awareness, many sufferers of fibromyalgia and chronic pain still suffer societal stigmatization. Why are they displaced and kept in liminality?

Liminality refers to the transitional time when a person lacks social status or rank and remains anonymous, thus threatening prevailing definitions of social order.

In the setting of a chronic pain illness, societal attitudes towards people with chronic pain often affect them negatively, diminishing their former confidence and how they see themselves in society. Liminality is caused by cultural and personal stigmatization.

In his Institute for Chronic Pain Blog, Murray McAllister, Psy.D, states, “the stigma of chronic pain is one of the most difficult aspects of living with chronic pain. If you have chronic pain, people can sometimes judge you for it.”

How Stigma Occurs With Chronic Pain

People with fibromyalgia or other chronic pain conditions are often stuck in liminality purgatory: If they rest or nap because of pain, others think they rest or nap too much; if they are caught crying because of chronic pain, observers become impatient and think they cry too much; if they don’t work because of pain, they face scrutiny over why they don’t work; if they visit a healthcare provider, someone might ask, “Are you going to the doctor – again?”

People with chronic pain conditions might be viewed as taking too many medications and can be accused of having drug-seeking tendencies. Any of these reactions reveal disapproval of how a person is coping with chronic pain. These disapproving judgments propagate the stigma of living with fibromyalgia and chronic pain.

Cultural stigmatization, or disapproving judgment, sometimes is conveyed through disbelief that anyone could suffer the amount of pain described, which then calls into question the legitimacy of resting, napping, crying, taking narcotics, unemployment or seeing a physician. At this point, a chronic pain patient’s personal awareness can integrate this judgmental attitude into their own concepts of living with these conditions, which unintentionally becomes personal stigmatization.

Stigmatization of people with chronic pain conditions can negatively affect interactions with a spouse and family members, friends and neighbors, supervisors, employers and healthcare providers.

It’s Not Visible And It Is Real

Invisibility is one of chronic pain’s most insidious problems. Interviews of patients at a pain clinic reveal that many feel that it would be much easier if they were missing a leg, had cancer, a pacemaker, or something tangible to which others can relate. Because others cannot see chronic pain, it is difficult for them to accept those who experience it, thus leaving people with chronic pain conditions in perpetual liminality.

During Pain Awareness Month in September, let us embrace the reality of invisible pain and acknowledge those who suffer from it, thus ending their social stain and ostracization from society.

My Talk With The General

2014 September 5

JimBy Jim of Allsup

I was mesmerized by what a retired Marine three-star general told me recently. He’s involved with active duty military members.  He’s also very familiar with the new legislation that will try to fix the Veterans Administration’s ailing healthcare system.

We talked for hours and shared our mutual experiences working with service members and others with disabilities over the last 30 years.

He talked in detail about the wars in Iraq and Afghanistan and how the savagery of these wars compared to Vietnam. And he talked about the crippling mental effects of combat, and how men and women on active duty are uncomfortable to acknowledge their mental health issues for fear of being discharged.

Because of the lack of treatment, he said, their problems are like ticking time bombs. Many don’t turn to the VA for help because they don’t think it can help.

I listened in silence, thinking about how many vets leave active duty with limited resources to find and get both the healthcare treatment and benefits they deserve.

The general is extremely passionate about the needs of these GIs. So am I, and that’s why Allsup is doing everything we can to help veterans who have been denied VA disability benefits.

If you or someone you know has been denied the benefits the VA promised, click here for information on our Veterans Disability Appeal Service. Or call (800) 279-4357 and ask to speak with one of our VA-Accredited Claims agents.

ACPA: Chronic Pain Affects The Entire Family

2014 September 4

PCowanBy Guest Blogger Penney Cowan, founder and executive director, American Chronic Pain Association  

In 2001, the American Chronic Pain Association began a campaign to establish September as Pain Awareness Month.

Our efforts paid off within the pain community. Today we all can quote the Institute of Medicine report Relieving Pain in America:A Blueprint for Transforming Prevention, Care, Education, and Research findings that there are more than 100 million people living with some form of pain and that pain costs more than $600 billion annually.

But what does that really mean to the average person living with pain? Are we aware of how destructive pain can be, not just for the person with pain, but the entire family?

At the ACPA, we hear many stories about couples who have worked all their lives, putting away enough money for retirement, only to lose it all because one of the partners develops a chronic pain condition. They watch their life savings vanish—and if they are already retired, they may face financial ruin.

If the well spouse is still working, it is like having two full-time jobs: their outside work and caring for the family. When chronic pain invades a family that is exactly what happens, and it is exhausting both physically and emotionally.

Chronic Pain And What We Cannot See—Hurting Families, Too

As with chronic pain, it is what we cannot see that is the most painful. To friends, co-workers and family, the well spouse may look fine. We cannot see the emotional and financial struggles that they must deal with daily.

And while family members may not have the physical pain, they experience the same issues as the person with pain: depression, guilt, anger, self-doubt, confusion, and many more emotions brought on by chronic pain.

Some cannot hold on and the relationship ends. Some try desperately to cope with the realities of living with a person with pain, which can take a heavy toll. Others do not take time to even consider their own needs but instead are controlled by the pain.

Family matters for so many reasons.

If we ignore their needs, the family will never heal and most likely will carry the scars the rest of their lives. The impact of chronic pain ripples through the family, and that ripple can turn into a destructive wave unless we reach out to everyone who is touched in some way by the pain.

Instead of focusing on the “I” of illness, we need to look at the “WE” of wellness by considering the whole family.

The ACPA offers a number of tools, including the Family Manual, which can help those living with someone with pain better communicate and cope with pain’s impact and challenges.

We invite you to visit our website at www.theacpa to learn more.