Archive for the ‘ Social Security ’ Category

Welcome to FIRE IN THE HOUSE! – a reality show that takes an inside look at life with CRPS.  Complex Regional Pain Syndrome is a dysfunction of the central nervous system.  Its cause is unknown.  There is no cure as of yet. Treatments are inconsistently successful.  It causes nerves to become hypersensitive to the environment, overreacting to stimuli by perceiving extraordinary pain or misinterpreted sensations.  At times and as CRPS progresses, it can lead to permanent damage to skin, bones, muscles and even internal organs.  As a result, mobility becomes difficult or limited, and severe pain can spread to other parts of the body. [CRPS Fact Sheet, NINDS]

Symptoms of CRPS include:

  • intense burning pain that worsens or spreads
  • profuse sweating
  • skin changes – color, dryness, temperature, texture
  • thickened nails
  • limited mobility due to stiffness or pain

Some people experience flare-ups that subside in time. Others, like my husband, get flare-ups that remain and become the “new normal” level of pain.


Why should people watch this show?  Because with awareness, they can learn the early symptoms and try to find a treatment that works.  Some research states that early diagnosis and treatment increase the chance of stopping CRPS’s progression.  Through awareness, we also hope that researchers and those who fund research will take an interest in finding a cure for this crippling form of endless torture.

Getting an inside look at living with CRPS can round out the “invisible” aspect of this painful disease.  Some people, including doctors and family members, don’t believe patients really experience the inordinate level of pain that they say they have.  “It’s all in your head” or “You’re exaggerating!” they are told.  Often, patients look fine until the pain makes them cringe in agony or physical changes become obvious.  These can be skin peeling, reddening or turning purple-gray; swelling or spasms taking place.

This reality show would expose yet another “invisible” side effect of CRPS: depression.  Many CRPS patients consider suicide as a preferable alternative to spending the rest of their life in unspeakable pain.

You won’t want to miss FIRE IN THE HOUSE!




PATIENT – in this case, my husband is the star of the show.  A kind and quiet man with a brilliant mind, a PhD in Economics.  He is homebound, suffers from brain fog, which makes him forgetful and unfocused.  The intolerable pain keeps him at home, for vibrations intensify his pain and walking 10 feet is exhausting.

DOCTOR – makes house calls and monitors his vital signs, medications and mental well-being.

NEUROLOGIST – oversees his medications and is ever-vigilant for new research that may help relieve the pain.

OXYGEN PROVIDER – supplies the oxygen machine that helps treat sleep apnea.

OCCASIONAL MEDICAL STAFF – they make house calls to do blood work, take X-rays, perform oxygen testing or whatever else the doctors order.

PHARMACIST – fills meds monthly and resolves any insurance coverage issues that sporadically arise.

MEDICARE & BLUE MEDICARE Rx – provide health insurance and cover doctors and meds every month. They are amazing and have provided the care that my husband needs in a professional, timely and compassionate manner.  The system has worked for us!

SOCIAL SECURITY – provides benefits upon disability and has been efficient and professional. We are grateful.

CAREGIVER / WIFE / EVENT PLANNER – I oversee my husband’s care, schedule appointments, pick up meds, resolve any and all issues regarding insurance, keep house and advocate for him.

DAUGHTER – Senior in high school, amazing person, crushed to see her father suffer so much and sad that he can no longer attend her theater performances or award ceremonies for her academic recognition.  Notices other friends have fathers present at events…



A recliner in a home in the suburbs with a huge window to catch the sunrise.

(Because hubby’s feet must be elevated at all times due to very poor circulation, a recliner lets him rest comfortably with his feet up.)



SOCIAL SECURITY DISABILITY BENEFITS APPROVAL – filling out forms, explaining in detail the disability and why it keeps my husband from working.  (Thankfully, approved!)  A saga in itself!

COPING WITH PAIN LIKE NO OTHER – what do you do when the pain doesn’t end but only gets worse?

PREDICTABLE UNPREDICTABILITY – just like change is the only constant, CRPS presents all sorts of “symptoms” that come and go at random.  These include inability to focus, not knowing what day it is, idiopathic fevers, aches, itching, weakness, peaches tasting like garlic, foods tasting fishy / offensive, muscle cramps, intense pressure, feeling like bones are being bent / crushed…

DISABILITY STEALS YOUR DREAMS – accepting disability is difficult but necessary.  We have adjusted our plans and dreams.

CREATING A NEW LIFE – out with the old, in with the new!  Exploring ways to make things work now.  Finding ways to cope and making the best of the situation.

LOVE LOVE LOVE – we are blessed to have it!  Life is about people – let’s be kind to each other.  Let us not just talk about love and charity; let them be evident in our actions!



Medicare Proposals an Improvement?

Medicare has been a highly debated topic during the last year, mainly in the search for ways to cut government costs in order to balance the federal budget.  While I’m not particularly politically inclined, discussions about altering Social Security or Medicare get my full attention since my husband enrolled in them as a result of his disability.  Medicare is his only health insurance policy, as no one else would cover his illness thanks to the pre-existing condition exclusion that remains in place for adults until 2014.  At least President Obama’s Healthcare Reform changed that right away for beneficiaries under 18 years of age.  The rest of us will have to accept the lack of coverage for a couple more years.

Considered “almost sacred,” according to some reporters, Medicare or Social Security are not usually probable candidates for much tampering.  So last year, efforts by some politicians to revamp Medicare in order to bring the federal budget back down to Earth raised a lot of political temperatures.  By mid-December, a reworked proposal containing parts of earlier efforts was laid on the table for discussion.  Let’s see if this version fixes the budget.  What I’d like to know is will it make Medicare better?

If anyone is going to restructure or “fix” Medicare, I would hope that it would be an earnest effort to improve it, not to be used as a stepping stone with an ulterior financial motive.  Too many beneficiaries rely on it for their healthcare and financial security.  What recourse would they have without it or with reduced coverage?

I have to say that our experience with both Social Security and Medicare has been excellent.  Although we have heard stories to the contrary, each agency has taken care of our family’s benefits with utmost professionalism and efficiency.  The only thing that we would suggest is to do away with that “Donut Hole,” but President Obama has already taken care of that!

Remember that you have a voice in choosing a representative who will look out for your best interests: VOTE!


GOP Medicare Proposal Doesn’t Work Like Members of Congress’s Health Care as Republicans Claim

The Inherent Flaws in Medicare Premium Support

Democrat Ron Wyden and Republican Paul Ryan Propose Overhaul of Medicare

What is the Donut Hole?

The President’s Budget for Fiscal 2012


Who’s Minding the Children?

As the holidays approach, I can’t help but notice the little children while I walk around the shops.  I see parents carrying curious toddlers as they cruise past the decorated store windows at the mall, moms pushing sleepy infants in their strollers loaded up with shopping bags, and placid kiddies with a look of resignation as they parade around the produce section confined to an inescapable shopping cart.  I remember when my son and daughter were little and I’d cart them around just like that.  And I think of how precious they are and what a huge task we take on to shape these little lives into “decent human beings.”

On my son’s first check-up, his pediatrician told me two things about parenthood that stuck with me through all these years:

  • give him love
  • the days are so long and the years, so short

At first, when she handed my beautiful cherub back to me, who was crying after being checked over, and she told me to give him love, I wasn’t sure of what she meant.  Of course I’m giving him love!  But thinking about it now, I think she meant to show him love.  To console him, to hold him close to me, to put him at ease in that strange and sterile room, to make him feel safe in my arms.  That, I did!

Toward the end of our visit, she talked about adjusting to life with a new baby and how sometimes, things didn’t go as we had planned.  She told me that her children’s pediatrician had passed on to her how the days are so long and the years, so short.  I understood about the long days even then!  But it is now that I see just how short the years are, and how we need to give them love no matter what!  I see my son and daughter in the little munchkins I see running about, playing, asking questions, riding in carts.  Wasn’t it yesterday that we were at the pediatrician’s office?  Twenty-four years gone in the blink of an eye!

We were blessed to have had 2 healthy children, but I know that that is not always the case for all families.  I see students who ride motorized wheelchairs arriving by bus at school and others who are escorted by aides or parents as they walk into the building.  I’m happy to see that they are getting an education like everybody else, and that people are available to provide support as needed.  In addition to schools, organizations also offer many types of assistance for children with disabilities or learning disorders.  As parents, we want all good things for our children.  The links below provide resources, assistance and guidance for parents of children with special needs so that they may grow and flourish to the best of their abilities.



VFW National Home for Children

National Dissemination Center for Children with Disabilities – Organizations by State

National Dissemination Center for Children with Disabilities

Children’s Disability Information

Types of Learning Disorders and Their Signs

Children with Disabilities – Travel Tips

Federation for Children with Special Needs

Support for Families of Children with Disabilities

Benefits for Children with Disabilities



Obama Administration Announces $749 Million to Fund Housing for Very Low-Income Seniors and Persons with Disabilities

“The U.S. Department of Housing and Urban Development (HUD) is providing $749 million in housing assistance grants to help nonprofit organizations deliver accessible housing, rental assistance and supportive services for the elderly and persons with disabilities. HUD’s Sections 202 and 811 Supportive Housing programs will kick start construction or major rehabilitation on housing developments in 41 states and Puerto Rico. Find out about rental assistance by contacting your local HUD office.”  Read more

Housing Vouchers and Public Housing tweets about benefits and housing every Monday



Social Security Launches New Spanish Online Services at:    Seguro Social

“Michael J. Astrue, Commissioner of Social Security, announced that the agency’s most popular online services, the applications for retirement and Medicare and for Extra Help with Medicare prescription drug costs, are now available in Spanish.  The new online services are available at, the robust Spanish version of Social Security’s award winning website,”

Seguro Social




Low-Cost Broadband and Computers for Students and Families

By: Josh Gottheimer and Jordan Usdan, Chairman’s Office

November 10, 2011


FCC Chairman Genachowski announced in Washington, DC an effort to bring broadband and computers to low-income families through a new non-profit initiative called “Connect to Compete.”

This project will begin in selected cities in the spring of 2012 and spread to the entire country by September 2012.  Read more


Social Security Announces 3.6 Percent Benefit Increase for 2012

From Social Security Press Office

Wednesday, October 19, 2011


The Social Security Administration has announced that monthly Social Security and Supplemental Security Income (SSI) benefits will increase 3.6 percent in 2012. The 3.6 percent cost-of-living adjustment (COLA) will begin with the January 2012 benefit payments. Increased payments for people on SSI will begin on December 30, 2011. For some beneficiaries, the increase in their Social Security benefit amount may be partially or completely offset by increases in Medicare premiums in 2012.”

Read more

Social Security Expands Compassionate Allowances Conditions

October 13, 2011


From Social Security:

“Michael J. Astrue, Commissioner of Social Security, today announced 13 new Compassionate Allowances conditions involving the immune system and neurological disorders.  The Compassionate Allowances program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years.”

As of now, Social Security has approved a total of 113 conditions. Read more



Compassionate Allowances is a federal government website that provides information on disability-related laws, benefits, programs and services.  Its aim is to connect people with disabilities, their family, caregivers, Veterans, employers, service providers and others with needed resources in order to ensure their participation in the workplace and in the community.

Many people have pre-existing conditions, which health insurance carriers often do not cover for the initial 6 months or longer under a new policy.  A Pre-Existing Condition Insurance Plan (PCIP) addresses this issue.



YouTube Video About Pre-Existing Condition Insurance Plan (PCIP)

“This video from the Centers for Medicare & Medicaid Services presents an overview of the PCIP online application, information about what to expect, and what information you should have on hand when you are ready to apply online. PCIP makes health insurance available to people who have had a problem getting insurance due to a pre-existing condition. Find out if there’s a PCIP in available in your state.”

This information was recently added to

To learn more visit Finding Health Care

In my search for news and updates regarding caregiving and related topics, I came across a website for Social Security news and announcements.  It is an official SSA website, not a blog or 3rd party site.  I have come across those, too, but I like to get the facts from the source and then formulate my own opinion.

From this website, you can get information on the regular Social Security topics such as Retirement, Disability, Survivors, SSI, Medicare or Business Services.