Skip to content

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.

Pain Connection: The Face of Chronic Pain

2014 September 2

Pain-blogFrom Gwenn Herman, LCSW-C, DCSW, executive director, and a personal story written by one of Pain Connection’s members

Our mission at Pain Connection-Chronic Pain Outreach Center, Inc. is to empower people with chronic pain to improve their quality of life, decrease their sense of isolation and take a more active role in their treatment. We provide information, psychosocial support, coping skills and training to people with chronic pain, their families and healthcare providers. In honor of our 15th anniversary, we are posting a blog by one of our members.

The Face of Chronic Pain by Pain 365

My sandals click on the marble floor as I walk the empty hallway towards the double glass doors. I am dressed well enough, my hair is done, I even managed a little make up. I am carrying a large, crisp, white shopping bag. I can hardly contain a sarcastic laugh as it occurs to me how insane this is. Anyone looking upon this scene would think that I was a healthy middle aged woman who had just purchased some new shoes.

But my reality is that inside my shopping bag is enough narcotic medication to kill someone, 60 individual sublingual Fentanyl sprays for breakthrough pain, six boxes of Fentanyl patches to help maintain this outwards façade. Fentanyl is 100 times stronger than morphine and I take it daily, like others take vitamins.

A gentleman comes in from outside and holds the door for me and smiles, I smile back and say “thank you.” He has no idea that I had to unclench my teeth for that smile and word of thanks. No one who sees me has any idea of the daily struggles to maintain “normalcy” while living with chronic pain.

Everyone, even my doctors, say, “Well you look great.” I know this is meant as a compliment, a reassurance. But it’s hard for me to take it that way.

I used to cry when people said that to me. But now I paste on the smile, even though it feels like an inner defeat. I don’t have any outward appearances, no limp, no inability to lift or raise my arms. I have no outward sign to signal the world around me that I am in pain, but the pain is still just as real.

The world can’t see what only my immediate family sees. That I can’t do more than a few hours of activity without having to lie down. That I am constantly fatigued. That the pain (and the pain medications) cause nausea.

While I may be able to one day go out to lunch with friends with my pasted-on smile and pretend that nothing is wrong, I may very well be spending the next day at yet another doctor’s appointment discussing yet another procedure, medication or surgery. Or that I had to make sure that I rested the entire morning and then later that afternoon just to be able to attend that lunch and act “normal,” look “good.”

No one, except for someone who has lived with chronic pain, can understand what this life is like. What is the “face” of chronic pain?

It’s my face.

Allsup “Disability Community” is Full of Information

2014 August 27

LW-blogBy Leia of Allsup

You can do just about anything online nowadays. You can take a picture of a check and deposit it right into your bank account, pay bills, buy anything you can imagine or even talk to someone around the world.

Allsup wants to make it easy for you to access the services we provide. That’s why we developed our online community with 24/7 access called, Allsup Place®. Allsup Place® is available to everyone, not just our customers.

Here you can:

  • check the status of your claim, if you’re a customer
  • schedule appointments
  • post on the forum
  • submit medical updates or information changes, if you’re a customer

Check the status of your claim

Anytime you want to know what’s going on with your claim, you just login to our secure website and see what stage you’re at in the process. We tell you what the next steps are and thoroughly explain the SSDI process.

Schedule appointments

Anyone registered on Allsup Place® can use the calendar feature to keep track of their doctor appointments, family birthdays or medication.

Post to the forum

Anyone registered can post comments to our forum on various topics. You also can read what others are talking about in our online community.

Submit medical or information changes

You can submit secure medical updates any time you have an appointment or if a medicine changes. If your address or phone number changes, you can inform us on Allsup Place® whenever it’s convenient for you.

Register today and be a part of our online community. If you are looking for more information about Social Security Disability Insurance benefits, call (800) 678-3276 for a free SSDI evaluation.

How Long Can You Wait To Apply For Social Security Disability Benefits?

2014 August 20

Swierczek-colorBy Ed of Allsup

A frequent question Allsup hears at workshops on Social Security Disability Insurance is: How long can I wait to apply for SSDI?

This is an important question because there is a time limit for benefits based on when someone stopped working, as well as the date of their disability. Sometimes the date of the disability is not the same as the date someone stopped working. These are two important dates that will impact an SSDI claim, and the situations for each person can be diverse.

For example, I’ve been asked what it means if a person experienced a disability five years ago, and then quit working in the past year? Other people have asked if they can still apply for Social Security disability benefits if they quit working several years ago.

There are a number of things to keep in mind about SSDI benefits when it comes to how long you can or should wait to apply.

Work History and Social Security Disability Insurance

To be eligible for SSDI benefits, you must be “currently insured,” which means that you have been working and paying payroll (FICA) taxes. More specifically, you must have paid for 20 quarters in the past 10 years to qualify. Each year, you can buy up to four quarters—which is why we say it’s critical to have worked five of the past 10 years.

You can “buy a quarter” of coverage by earning a certain amount during a specific calendar year. In 2014, workers buy a quarter if they earn $1,200. So earning $4,800 places someone at the maximum quarters earned for the year and provides them with four quarters of coverage. Those who experience disability and must quit working before age 31 have fewer requirements. You can contact an SSDI expert at (800) 678-3276 to learn more about applying for SSDI at younger ages.

In addition to being currently insured, you must be “fully insured.” This also is based on having a certain amount of coverage—40 quarters of coverage is needed to be fully insured. Again, younger workers have fewer requirements.

Thousands of people each year are denied benefits because they simply haven’t worked long enough or recently enough to receive SSDI benefits. Yes, you can wait too long to apply for SSDI benefits after a disability.

In a future blog, I’ll discuss the importance of a person’s date of disability. Keep in mind: These are just a couple of areas related to your claim for Social Security Disability Insurance benefits. For example, you also must have a disability that will keep you from working for 12 months or longer, or is terminal.

For more information or to see if you may qualify for Social Security Disability Insurance benefits, call (800) 678-3276, or go to Expert.Allsup.com for a free SSDI evaluation.

If Mental Illness Were Easy To Understand

2014 August 14

RW-starBy Rebecca of Allsup

A lot of discussions are taking place in the wake of  Robin Williams’ tragic suicide on Aug. 11, which is being attributed to his struggles with depression. It’s understandably difficult to make sense of why someone with so much to offer and live for would do something like this.

As much as people would like clear and simple answers, the truth is that mental illness is not easy to understand. We know this is true because of the way society continues to struggle with how to address the repercussions of mental illness, including suicide and disability.

If mental illness were easy to understand, more family doctors would be comfortable talking to their patients about it and screening for it. If mental illness were easy to understand, there wouldn’t be the stigma and huge burden for individuals and families dealing with it.

If mental illness were easy to understand, there wouldn’t be so many fields and professions—psychiatrists, psychologists, mental health counselors, physicians and neurologists—who spend their life’s work researching it, attacking it and trying to successfully treat it.

If mental illness were easy to understand, the American Psychiatric Association wouldn’t have released the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders—with 947 pages and about 300 disorders listed last year.

If mental illness were easy to understand, many things would be different today. If mental illness were easy to understand, treatments would be better. If mental illness were easy to understand, fewer people would receive Social Security Disability Insurance benefits for mental disorders because more people would receive effective treatment.

If mental illness were easy to understand, more people would realize why Robin Williams did what he did, or realize that he needed to get help, or understand that there might have been other options but that he did not see what those might have been.

Mental illness is not easy to understand, but it does deserve understanding. Nearly 60 million people in the U.S. experience mental illness every year, according to the National Alliance on Mental Illness (NAMI). So, from a group of 10 people, it’s likely two of them have experienced a mental issue within the past year.

In California, the state Robin Williams called home—there are many people spreading the word that “Each Mind Matters.” This is a compelling message for some who may take for granted that their mind works just fine. There are other ways to try to understand mental illness, including checking out NAMI or MentalHealth.gov.

If you have a favorite memory of Robin Williams on your mind, you can share it by visiting Allsup on Facebook.

The P Is Silent, But We Don’t Have to Be During Psoriasis Awareness Month

2014 August 13

Psoriasis-Awareness-MonthBy Tai of Allsup

Can a “skin disease” be disabling? If it is the chronic, autoimmune skin disease psoriasis, the answer is “ Yes!” Psoriasis speeds up the growth cycle of skin cells, creating patches of thick, red skin and silvery scales, also called plaques. Plaques can be found on the elbows, knees, scalp, lower back, face, palms and soles.

Disability Impact From Psoriasis

In severe cases, movement or pressure may cause skin to painfully split open and bleed. For patients with psoriasis on their feet, it’s often hard to walk. Plaque on the hands makes even simple tasks impossible or extremely painful.

Up to one-third of people with psoriasis also develop psoriatic arthritis, which affects the joints, restricting mobility and gross and fine motor skills, according to the National Psoriasis Foundation (NPF). Patients with psoriatic arthritis also may have trouble sleeping and sitting, standing or walking for long periods.

Given these painful and visible physical symptoms, it is not surprising to learn that psoriasis exacts an emotional and psychological toll as well.

Data gathered from surveys conducted by the NPF from 2003 to 2011 revealed psoriasis and psoriatic arthritis affected overall emotional well-being in 88 percent of patients, and interfered with enjoyment of life in 82 percent.

Most patients reported experiencing anger (89 percent), frustration (89 percent), helplessness (87 percent), embarrassment (87 percent), and self-consciousness (89 percent). These emotions can lead some people to withdraw socially, and become isolated.

Help With Psoriasis Awareness In August

I recently read a blog written by a woman with psoriasis. She had found a diary entry from her teens, in which she called herself ugly and her greatest wish was to simply sleep through the night. She wrote that while she could not go back and hug that teenage girl and tell her she was beautiful—she could do something for others who feel this way now.

If you have psoriasis or know someone who does, Psoriasis Awareness Month held in August can be a time to show your support. If you are an employer, consider ways to accommodate employees by creating ergonomic work spaces and considering flexible dress codes that allow for physical comfort. If you have psoriasis and are working, visit this NPF link.

For those cannot keep working, determining eligibility for Social Security Disability Insurance could be the first step in reclaiming some control over finances and healthcare choices. For more information or a free SSDI evaluation, call (800) 678-3276.