The Bad News About Student Loan Disability Discharge

What the .....!

A few weeks ago I wrote about the challenges of chronic illness.  One of the challenges is financial hardships, from huge medical bills to a reduced income potential.  For me, personally, I am currently considered permanently disabled and unable to work due to the symptoms of my multiple chronic illnesses.

Despite my numerous efforts to "get better," I've been disabled for over 8 years now.

When I first became disabled in 2004 with the chronic pain and fatigue of fibromyalgia, I thought my former employer's short- and long-term disability insurances would kick in with disability income so I could keep paying all my bills.  I didn't know back then that the long term disability coverage would terminate after 2 years because it limited benefits for those diagnosed with fibromyalgia.

I appealed their decision, I went through the entire appeals process and was unable to get them to reverse their decision.

I found out the hard way that my safety net had a huge hole in it.  I went from earning a living to living on disability and taking a 61% pay cut. How to continue making my monthly student loan payments became one more boulder on a growing mountain of financial problems.

I was grateful in 2006 for the relief my student loan servicer offered.  I asked for a temporary disability forbearance, i.e., to be able to temporarily stop making my loan payments.  Back then I still hoped my situation might be temporary, that my doctors' would be able to get me back on my feet and working again.

To that end, I diligently followed my doctors' advice and complied with all the things they wanted me to do: take medications, go physical therapy, agree to trigger point injections, schedule deep injections and try acupuncture.

Time passed.  All those treatments my doctors prescribed failed to improve my symptoms.  I rapidly approached the 3 year time limit on requesting temporary disability forbearance. 

My next option with my student loan servicer was loan forgiveness due to total and permanent disability.  At first, I was almost reluctant to take this option, mostly because it seemed like a big declaration of "I'm not ever going to get better!"  But I felt like I had no choice; our budget was already lean and there wasn't any money for us to start making payments again.

This was a separate application process.  I needed to have my doctor complete a form verifying that I was permanently disabled.  Now that filled me with trepidation.  Have you ever needed to ask a doctor to put into writing that you are permanently disabled?  Because when you do, they look at you like you're asking them to admit they aren't able to help you.

Apparently doctors aren't good at stating the obvious.  My doctor initially balked when I asked her, despite the fact that there was absolutely no improvement in my symptoms or functioning over the past five years.  She only agreed after she asked if I was on Social Security Disability.  Somehow knowing I was on SSDI made it O.K. for her to say I was permanently disabled.

I got what I needed.  But to this day I just don't understand the moral dilemma my request presented her.

Now you don't get your loan forgiven overnight if you are totally and permanently disabled.  There is a 3 year conditional discharge waiting period.  Fortunately, student loan payments are suspended during this time.  

I was OK with waiting for 3 years, because if somehow I did improve and was able to work again, I would have gladly started repaying my loan again.  After all, it was my student loans that picked up all the school expenses that my part-time job didn't while I was in graduate school.  Those loans helped me earn a degree that launched my career in social work, a career that I really and truly miss.

At the beginning of last year it was crunch time.  My 3 year conditional discharge period was coming to an end.  There was some very important paperwork I needed to submit to my student loan servicer and I ran into some problems getting it faxed to them.  I needed to resort to snail mail, sent certified, to confirm it got to them.

After the anxiety of filing out forms, getting my doctor to say I was totally and permanently disabled and dotting the i's and crossing the t's on the final paperwork, I got word at the end of Spring 2012 that my disability discharge had been approved.  I thought my worries about my student loans were over.  Thank goodness!

Then I got a 1099-C form in the mail this past January from my student loan servicer.  I wasn't expecting it.  So I did some research and discovered that my discharged student loan debt was reported to the IRS as income.

I don't remember my student loan servicer ever telling me that my discharged loan would be considered income.

So we did our taxes early this year, cringing at the thought that we would owe the Feds and the state money this year.  Money we don't really have.

Sure enough, we have a whole new financial problem on our hands. We are straddled with a new debt, payable on April 15th, that will accrue interest and penalties if not paid on time.  So despite my best efforts, it feels like that mountain of financial problems only keeps getting bigger and bigger.

I guess the only "good" news is that my student loan debt is relatively small, at least compared to the woman featured in this article: New Jersey Woman's Student Loan Debt Creates Tax Nightmare.  And I am not alone in dealing with this; it's my spouse's income that will be getting us out of this latest pickle.

But what can all those other disabled workers with student loan debt like Kim do? How can they be expected to pay huge IRS tax bills when their earning potential is reduced and their savings are spent on medical bills?  Some of them don't even file a tax return because they now live below the poverty line.  Just imagine getting a horrid surprise from the IRS saying you owe taxes on income that, well, you didn't really get when your loan got forgiven!

I know the powers that be want to make defaulting on Federal student loans hard and painful.  In fact, student loans have historically been excluded from bankruptcy proceedings.  But I think you'll agree that when it comes to total and permanent disability there really needs to be some legislative reform on this issue.

This is completely unfair and burdensome to the disabled. (Yes, I know...life is unfair, yada yada, yada.)

At the very least, how about telling folks up front about the tax implications of loan forgiveness?  Or offering to help by spreading the "income" across several different tax years to make the tax burden more manageable?

My unsolicited advice for those of you going through this process RIGHT NOW: talk to a bankruptcy lawyer.  Ask them if you can get your student loans discharged through bankruptcy so you won't get hit with a huge tax bill you can't pay. Because I hate to say this, but depending on the size of your loans and resulting tax bill, you might be filing for bankruptcy anyway...  But hey, take this advice with a grain of salt, because I'm not a lawyer or a student loan servicer, so what do I know?

PFAM - The Fright Files: Stories of Medical Mistakes

Look, I know the supernatural is something that isn't supposed to happen, but it does happen.

~Dr. John Markway, The Haunting, 1963  

Halloween is here once again, the time of year we dress up like ghouls and goblins, head out and ask total strangers for a "Trick or treat!" Having grown up in the era of razor blades in apples, when hospital radiology departments offered free x-rays to ensure your haul was safe to eat, this annual tradition still seems risky to me.  But it doesn't stop the trick-o-treaters from coming to my door every year...

While Halloween is just one day out of the year, the real truth is that tricks and treats happen to us all year long.  Take health care for example.  We keep consuming health care even though, every 7 days, the number of hospitalized patients killed by medical mistakes would fill 4 jumbo jets.  Dr. Marty Makary says that if medical mistakes where a recognized cause of death, they would be ranked number 6, right after accidents and before Alzheimer's disease.

Now that is some really scary stuff.

While it is true that dead men, and dead patients, tell no tales, their families do, and rightfully so, through the media, lawsuits and formal grievance procedures.  But what about the rest of us, fortunately spared an untimely death, but still receiving care that is erroneous, sub-standard or unneeded?

According to ProPublica, an independent, non-profit investigative journalism newsroom, most of the patients affected by medical mistakes do not file formal reports about them and they think this is a problem for all of us.  I found their article Why Patients Don’t Report Medical Errors to be an informative primer on this subject.

Since one of the barriers to reporting errors is knowing who to contact to file a formal grievance, I recently put together a resources list for those living in the United States here.

So I asked participants in this month's Patients for a Moment (PFAM) blog carnival to be brave and courageous. I wanted them to write about the ways that health care has scared them, injured them or let them down.  I hope they inspire you to do the same, because I think to get better health care we all need to be empowered to discuss every aspect of it: the good, the bad and the ugly.

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Poor Iris!  Some pretty scary things happen with her medical care when she was in her 20's, long before she was diagnosed with lupus.  Seems her doctors and other health professionals should have given her more information when they obtained her consent to carve her up and stick a tube down her throat.  Read Medical Horror Stories over at Sometimes, It is Lupus.
         
For some of us, nothing causes as much dread and foreboding as anticipating "the talk" from our doctor about how we need to lose weight.  Kathy from FibroDAZE advises caution though if you doctor suggests taking newly-approved Qsymia and Belviq to help you shed the pounds.  These drugs have the potential to cause some pretty horrific side-effects, which has got Kathy thinking Obesity Has Gotta Be Healthier Than This.

Witches are scary, with their evil spells and potions, like the one from the fairytale Snow White who said, "Take this apple, dearie. Go on. Have a bite."  Duncan Cross knows what is even scarier.  It's when a witch is disguised as a doctor and encourages you to take a drug that turns you into a...well, you'll have to go find out:  Things I Blame on Prednisone. 

Maniacal doctors experimenting on patients, medical procedures conducted without anesthetic and bone-chilling screams; these things don't just happen in the movies, they can happen to you at your next doctor's visit.  Shruti of Lifestyles of the Ill and (mostly) Blameless shares her true story about her encounter with "Dr. Frankenstein" in Tales from the Emergency Room Crypt: Spinal Tap.  It sure sent shivers down my spine!

Oh the creatures of Halloween--zombies, vampires, werewolves and witches--each doing something different yet equally frightening, like eating brains or drinking blood. Did you know there are over 60 different kinds of doctors practicing in our medical system?  They all do something different too and sometimes you have very good reasons for needing more than one of them as Rachel points out in her post #NHBPM - How ridiculous! at Tales of Rachel.

Let me be clear here: it's not just doctors making mistakes or ignoring patient feedback.  In Sometimes The Truth Is Scarier Than Fiction: A First-Hand Account Of A Medical Mistake, Leslie tells the tale of a nursing error that landed her in the hospital for 3 days.  Yikes!  But she says that's not even the most troubling part of her story.  Eek!  See for yourself at Getting Closer to Myself.

Restricting your T.V. time has to be one of every kids' nightmares, especially when that Halloween marathon of Twilight Zone episodes is about to begin.  But can you believe this punishment got imposed on Rachael all because of a drug side-effect?  Read this truth-is-stranger-than-fiction story and its sequel at Offbeat Follies: Mistakes of the Medicinal Kind and The Ghost of Douchebags Past.

Halloween tricks--we all hate them. We hate health care trick too.  Raise your hand if you, like Sharon of After Gadget, have even gone to a doctor's office that wasn't ADA compliant.  What about a doctor who refused to treat you?  You can all put your hands down now and proceed to Waspish Wednesday: Yes, Lyme DID Cause This.

Who doesn't fear that Halloween staple, the haunted house?  Unfortunately haunted houses aren't the only places where weird, shocking, annoying and unexplained things happen.  See Selena's reflections on health care disappointments in Lessons I Learned as a Patient in the UCLA Health System here at Oh My Aches and Pains!

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That's all for this edition.  I hope you have as much fun reading this as I did putting it together.

Please join us again next time!  Amanda at Crazy Miracle is hosting the next edition, so please visit her blog and look for her call for submissions at the beginning of November.

We will also be looking for hosts for the carnival for next year, 2013, so please consider volunteering.  Contact Leslie if you are interested.

Want to learn more about PFAM?  Check out the website and Facebook pages.

Invisible Illnesses, Visible Hope

Today is the beginning of National Invisible Chronic Illness Awareness Week and I am blogging, or rather vlogging, in support of this great cause.

The theme this year is:  Got An Invisible Illness?  Share your images of Visible Hope!  Which is where the vlogging comes in...

I put together images of myself from the past 8 years, during which time I have been disabled by my chronic, invisible illnesses.

I can honestly say that I have done everything I could to try and "get better" over the last 8 years. Ultimately, I learned that my doctors and other health professional could not do that for me.  Rather than be bitter or angry, I worked hard to accept this as my current reality.  That helped me switch my focus to managing my illnesses the best I could using the self-help measures I learned at the online CFIDS and Fibromyalgia Self Help program.

Today my number one priority is to do the very best job I can to take care of myself so my illnesses don't prevent me from doing the things I can do.

That doesn't mean that I have given up hope!  I still believe that one day I will feel better.  I am confident that some smart researcher will discover better medications to manage my symptoms so I can live with less pain and less fatigue.

Until then, I continue to do what I have been doing in earnest over the last 5 years: learning to live my best life despite chronic illness and inspiring you to do the same.

This is Selena (on the right.)

She lives with invisible chronic illnesses.

Her doctors can't make her better,  so she tries to live her best life despite her invisible chronic illnesses.

Her illnesses have disabled her for the past 8 years, but she still hopes one day she will feel better. 

Her hope is visible when she smiles!

Click this image to learn about the 5 day virtual conference at InvisibleIllnessWeek.com.

Me & Hep C: I Am Part of the Next Big Epidemic

Today I start Hepatitis C treatment.  Monday I learned that Hepatitis C (HCV) now kills more Americans every year than HIV. These two facts have inspired me to share a story with you today.  You already know I live with HCV, but what you might not know about is my personal connection to people living with HIV.

As I write this, I am realizing that in many ways this is really a story about life coming around full circle...

Helping Other People

Growing up, I always wanted to help other people.

For a while I thought becoming a doctor would be the way to do this.  When I didn't get straight A's in college, I shifted my focus to allied health professional careers and began to research a career in pharmacy.  Then I got cancer and my college studies got interrupted.

After I had the good fortune to beat cancer, I returned to school after a four quarter hiatus to finish my undergraduate degree.  I went back to planning for my future too.  Turns out, having cancer helped me discover the field of social work, which turned out to be a perfect fit for my childhood aspirations.

Facing Down Deadly HIV/AIDS

When I began social work school in 1990, I decided I wanted to work with persons living with HIV and AIDS.  Back then a lot of people didn't want to work with AIDS patients because of the stigma associated with this viral illness.  But I wanted to work with this group because I felt I had something to contribute since they were facing a lot of the same issues I had faced as a cancer patient. I strove to blend the knowledge from my personal experiences with my professional education to help make a difference in other people's lives.

This hard, challenging and important work really appealed to me.

I spent nine years working with people living with HIV.  I was there to witness the enormous change treatment with antivirals drugs made in 1995.  These new life-saving medications turned HIV infection from a progressive, life-threatening disease to a manageable, chronic illness.  With the new medications, my work became more about helping people figure out how to live their lives with HIV and less about helping them face their death because of it. 

Along the way, my clients taught me, pushed me and helped me evolve into one really good social worker.  For this I will always be truly thankful to them.

Now Hepatitis C is the New Killer

Today I know that Hepatitis C (HCV) kills more Americans every year than HIV.  Given my past with HIV and my present with HCV, that headline truly took my breath away.

First I got angry because:

• It's about damn time the medical community started understanding the true impact of HCV infection.  They know so much more about HIV than they know about HCV.
• It's about damn time more effort was put into a public health campaign to help people identify their risk factors and encourage them to get tested for HCV.  Look how well the public health campaign for HIV has worked.
• It's about damn time there are antiviral drugs for the treatment of HCV.  After all, antiviral drugs have been around since 1995 for HIV.
• It's about damn time the public understood the seriousness of the HCV epidemic and the toll it takes, in both lives and money, on our society. We all know how devastating HIV has been; why are we letting another virus do this to us again?

Then I took a moment to connect with my grief as I felt the impact of this news on me personally.  I am one of the 3.2 million Americans living with Hepatitis C.  But unlike so many others, I know my HCV status.  I know because I became sick with acute hepatitis after I contracted this infection.  Thankfully, this knowledge has informed a lot of healthy choices since 1988, choices I have made in the name of protecting my liver and doing what I can to prevent the progression of this liver disease. 

But even all these healthy choices haven't been enough to prevent HCV from quietly taking away pieces of my health over the past 24 years.

Coming Full Circle

Then I started thinking about my beloved social worker career, the one I was forced to give up almost eight years ago because chronic pain and fatigue disabled me.  I thought about my path leading to my social work career (which I described for you above.)  That got me wondering if someone today will be inspired by this recent news to seek out a career helping people living with HCV.  People like me.

The funny thing is, for years now, I have known that HCV was going to be the next big epidemic.  This recent headline finally confirms this.  Instead of an "I told you so!" moment, I can honestly say I was taken aback by the emotional impact this information is having on me. I feel shocked, overwhelmed and saddened by this news.

Most of all, I don't want to become a casualty of this war.  I don't want to be a HCV disability or death statistic.  So today I start Hepatitis C treatment secure in the knowledge that this is the right course of action for me right now.  And I'm giving this all I got because I want to beat HCV.  

Related articles

• Hepatitis C Now Killing More Americans than HIV (blogs.scientificamerican.com)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

The Debt Ceiling and Social Security: Don't Screw the Disabled & Elderly!

Image via WikipediaCongress and the President better not screw this one up...

I simply don't understand how Social Security has gotten all tangled up with this debt ceiling crisis. I thought there were measures in place to keep the Social Security system solvent and functioning. I am even more confused after reading this article at the Huffington Post: Disentangling Social Security from the Debt Ceiling.

All I know is that there is going to be hell to pay if I don't get my Social Security check in August.

Why is the government picking on people who receive Social Security benefits?  By threatening to withhold payments, the government will cause undue financial hardship for the elderly and disabled who rely on these payments to pay the rent and buy food. What a clear demonstration of what little regard our elected officials have of the disenfranchised in our society.

How quickly they forget that the majority of us who receive these benefits have paid into the system, thus making us eligible for these payments.  I haven't forgotten all the hoops I had to jump through, like I was some kind of circus dog, just to qualify for disability benefits. Plus they seem to forget that many of us are paying income taxes on the benefits that we receive.  Unlike big corporations and wealthy individuals, we don't shirk our tax responsibilities through the use of shelters and shell games.

These tight economic times have taught the average citizen that we need to be more thoughtful with our money.  We all have been learning to spend less, save more and be creative about generating and leveraging our income.  Clearly, this is a lesson that our government needs to learn as well.

I suggest that instead of inconveniencing the disabled and elderly, the government needs to call in all the favors it extended to big business and the wealthy during this economic downturn. It's time for all these entities to start paying their fair share.  I bet if they started paying what they truly owed the government this whole debt ceiling crisis could be resolved quickly and easily.

Better yet, go after all those insurance companies who are making money by denying claims from people disabled by illnesses like fibromyalgia and chronic fatigue who can no longer work because of their severe pain and fatigue.  These companies are creating a greater burden on the Social Security Disability system. Through the use of policy limitations and loopholes, they discriminate against disabled people based solely on their diagnosis.  I have personally been affected by this insurance company practice and I think this is all kinds of wrong.

I also suggest that the government take the proverbial hard look at all of its expenditures and be more diligent about avoiding waste and inappropriate use of funds.  Right now, it's my opinion that everyone in Washington is getting paid way too much money for the mediocre work product they are giving us in return.  And why do we pay wealthy politicians an overly generous salary and provide them with a cadillac benefits package anyway? They should get paid what their constituents make to keep them in touch with the issues facing the average American.

My husband, the Republican, and myself, the Democrat, both agree that if I don't get my Social Security check in August we are going to join the protests that are going to result from this horrible decision.  It's also going to make us think twice about reelecting incumbent candidates for political office the next time we head to the polls.

I'm already sick and tired.  I don't have the energy to deal with the fallout from all these political shenanigans.  Get your act together Washington and stop stressing me out with your blatant disregard for my health and well-being.

Related articles

• Nancy Altman: Disentangling Social Security From the Debt Ceiling (huffingtonpost.com)
• National Journal poll: Tax us, don't take away Social Security, Medicare (dailykos.com)
• 'Preparing for the Worst' GOP in House and Senate Call for Prioritizing Payments Post August 2nd if No Deal (blogs.abcnews.com)
• GOP senator: Debt-ceiling deal may come too late (sfgate.com)

Question of the Week: Can You Say the "D" Word?

Image via Wikipedia
In my Mission 2011 post last week, I asserted that the key to fibro-friendly travel is:

"...learning to feel comfortable saying, "I am a person with disabilities and I require reasonable accommodations."

Apparently that was a difficult thing to ask of you.

So today I want to write more about why I think it is important to feel comfortable saying the "d" word, especially if you are a person living with invisible illnesses, like cancer, fibromyalgia, Hepatitis C, type 2 diabetes and dysautonomia.

There have been a lot of brave and courageous people who came before us that lead a disability movement demanding civil rights for people that are "differently abled." Their goal was to obtain equal access and equal opportunities for inclusion into society.

While many of these pioneers lived with mobility impairments and used wheelchairs, they also recognized that the disability community was a heterogeneous group consisting of persons living with a variety of different challenges, from blindness and deafness, to mental illness and invisible illness. They recognized that disabled people were a minority, a minority that anyone could join at any time in their lifetime.

They stood together and asserted their civil rights to ask that barriers be removed so that they could participate in society to the best of their ability. If you look around today you can see many of the fruits of their efforts: ramped entrances to buildings, curb cuts, disabled parking spaces and seats at venues, sign language interpreters and reading materials available in Braille.

You can also see their legacy in important legislation here in the United States, like the Americans with Disabilities Act of 1990 and the Family Medical Leave Act of 1993.

While those of us with invisible illnesses don't look disabled on the outside, we need to have barriers removed so we can live our lives to the fullest too.

While we come up with many ways to describe our illnesses, like chronic pain, chronic fatigue, etc., nothing quite has the impact as saying we are disabled. It is that one little word that can literally open doors for us that a lot of other words we use cannot. That one little word gives us clear rights to the reasonable accommodations we need to remove barriers. Plus it helps others in our society expand their definition of who people with disabilities really are, thus creating the disability culture that was the secondary goal of the disability movement.

That said, let me clarify a few things about what being disabled means:

• Being disabled doesn't mean you need other people's charity or pity; it does mean you might need barriers removed so you can actively participate in society.
• Being disabled doesn't always mean you can't work; it does mean you might be entitled to some extra help to be able to or continue to work.
• Being disabled doesn't mean you have to put up with harassment; it does means that by law you cannot be discriminated against in activities like: work, housing, transportation, shopping and health care.
• Being disabled means that your spouse or significant other can take time off work when needed to assist you and not have to worry about losing their job in the process.
• Being disabled doesn't mean you always need help; in fact, as the result of laws and increased societal acceptance, it often means you can be independent and even offer help to others.
  

So this week I want to hear your thoughts about this topic. I want to know if you can accept the idea that your health challenges make you a member of the disability community. I want to know if you can embrace this identity or not. Can you say the "d" word?

Please feel free to leave a comment here on OMA&P! or over on the OMA&P! Facebook page.

Related articles

• Mission 2011: When Your Special Event Involves Travel (ohmyachesandpains.info)
• Disability Myths Debunked In Invisible Illnesses & Chronic Pain (fightingfatigue.org)
• Able To Work (time.com)
• You can call me Julie (musingsofacollegegrad.org)

Social Media: A Source of Fibromyalgia Hate? #lovebeatshate

Image via Wikipedia(Note: Today I am participating in another edition of the Love Beats Hate blogging event. Please check back tomorrow for my weekly Mission 2011 post.)

It hard to believe that social media, my largest reservoir of support in dealing with my chronic illnesses, is also used by people to deny the existence of fibromyalgia and bash people living with it.

I don't deny that sometimes living with fibromyalgia is just bull$#*@! However, I know fibromyalgia is not some made up illness people are feigning in order to qualify for disability benefits, get out of working, be lazy, evoke sympathy from others, etc., etc., etc. So it's hard not to hate back when other people in social media level these and a myriad of other accusations against people living with fibromyalgia.

Yes, I know, there is free speech and everyone is entitled to their own opinion. If this "free speech" really bothers me, of course I can just ignore or block these people and their negative campaigns. I can also interpret these attacks as just another example of the "but you don't look sick" mentality that seems to prevent others from understanding and supporting people who live with invisible illnesses. Which maybe is my cue to do more to raise awareness and educate people about what living with a chronic, invisible illness "looks" like.

But let's be honest. Since there is no way to prove without a shadow of a doubt that someone has fibromyalgia using an objective test, like an x-ray, MRI or blood sample, the door of doubt is open. If the door is open, people will go there. It doesn't make what they say and do online right, but it does unfortunately give them an opening to question and cast dispersions.

While the online fibromyalgia community does its best to shut down these hate sites, pages and discussions, it isn't just individuals online who are prejudice against fibromyalgia.

For example, did you know that many long-term disability insurance carriers limit benefits they pay out to people diagnosed with fibromyalgia? I didn't until I was denied ongoing benefits after two years of being disabled by my severe fibromyalgia symptoms. When I appealed their decision, the long-term disability insurance company didn't even try to build a case denying I had fibromyalgia. No, quite the contrary, they reviewed my medical records and declared that fibromyalgia was my primary disability.

The message they sent me was something like: "Why yes, she is disabled, but unfortunately we don't provide long-term disability benefits for people with fibromyalgia after two years. Sorry." I image them laughing all the way to the bank with the money they saved giving me the shaft.

So when I saw an advertisement on Facebook recruiting volunteers who have fibromyalgia for a study of an investigational blood test to confirm the diagnosis, I wrote the number down. I called yesterday to volunteer and my appointment is on March 2nd. From where I stand, giving two ounces of blood and 45 minutes of my time seems like a small price to pay to help prove that fibromyalgia does exists and confirm without a shadow of a doubt that I have it.

Quite frankly, any efforts made to get the diagnosis of fibromyalgia out of the garbage can and into the realm of cold, hard scientific fact will have my support and, if possible, my participation.

So you see, it's not just love that beats hate. I'm rooting for science to find a way to prove the diagnosis of fibromyalgia and silence the nay-sayers, the discriminators and the disbelievers. Until then, I am hopeful that the power of social media will continue to empower people living with fibromyalgia to take a stand against online hate and send a clear message that bashing people due to their invisible illnesses will not be tolerated.

Today is the International Day of Acceptance

From the website www.3elove.com:

Today is a day to...

• Strive for the social acceptance of disabilities.
• Embrace who you are, educate your community and empower one another.
• Honor the late Annie Hopkins, co-founder of 3E Love.
  

"3E Love is more than living disabled but is simply about living. Everyone has the freedom to live their life. We challenge you to do what you love, because you'll meet some amazing people along the way, and that, our friends, is how you'll enjoy this ride that 3E Love calls, life.

Embrace diversity. Educate your community. Empower each other. Love life.”

~ 3E Love Founder, Annie Hopkins (1984-2009)

Today I want you to know just one more thing about me...

---> I don't live disabled; I live life.

Today is the International Day of Persons with Disabilities

Image via Wikipedia
Did you know that December 3rd is the International Day of Persons with Disabilities, an annual observance (since 1981) of the Convention on the Rights of Persons with Disabilities of the United Nations?

Well, neither did I...

Now that I do know, have visited their website UN enable and read the assignment for this year's celebration, I am ready to highlight an obstacle in implementing disability-sensitive policies right here in my community.

Did you know that it is not required for stores to provide a shopping scooter for their disabled and mobility-impaired customers?

I talked to a very nice clerk at the Trader Joe's in Santa Monica, which has two shopping scooters for patrons by the way, about this issue a few months back.

He told me that one of his relatives was forced to sue their local grocery store because they refused to provide a shopping scooter after requesting one many, many times. I discussed with this clerk my frustrations with two local Trader Joe's locations: one which did not have a scooter and the other where the scooter was broken and unusable. We talked about how it would see that, under the Americans with Disabilities Act, providing a shopping scooter would be required. Much to our dismay, apparently it is not.

For those of you who visit my blog, you know I advocate using a shopping scooter to stay within your energy envelope when grocery shopping. Every time I ignore my own advice, or I am forced to forgo using a scooter because the store doesn't have one, it is being used by someone else or the one they have is broken or not charged and ready to go, I always regret it.

Grocery shopping is like running a marathon for me. Without the shopping scooter, I feel dizzy, faint and utterly exhausted by the time I reach the cash register. There have even been a few times where I have actually abandoned my shopping because I get too tired to continue.

I don't understand how a grocery or retail store can say they are implementing disabled-sensitive policies if they don't provide a way for a mobility-impaired disabled person to travel around their store. After all, we need to shop for things like groceries, clothes and personal care items too. I have made it a policy not to shop at stores that don't provide shopping scooters as a way to protest, but I am not sure this is enough to force these retailers to change.

So I'm going to ask you to do two things:

1. The next time you are out shopping, take a moment and look to see if your favorite stores offer shopping scooters to their disabled patrons.
2. If they do not, speak up and say something to the manager like, "I see you don't have shopping scooters for disabled persons. My (wife, sister, daughter, friend etc.) couldn't shop here without one and you are losing her business."
   

Making the world more inclusive of persons with disabilities requires a bit of effort from all of us. On this International Day of Persons with Disabilities, stand up and demand that they are included and can participate in all aspects of daily life, just like all the healthy people out there can.

How to Really Help Me When I Ask For Your Help

Image by draggin via Flickr

Perhaps the most frustrating thing about being disabled is needing to ask for help.

The second most frustrating thing is navigating the whole dynamic of being the person who is being helped. Low and behold, I have discovered that many strange things can happen when you ask your family, friends and strangers for help. All of a sudden, roles emerge, power and position come into play, feelings arise and demands are placed on the parties involved. It's the kind of stuff that has to potential to cause as many problems as it solves!

Needless to say, I feel strongly about how I want this helper/helpee relationship to function:

Don't offer to help and not follow through

You have no idea how much I need help from others and how little money I have to hire someone to help me. So when you offer to help me out of the goodness of your heart and free of charge, I absolutely want to take advantage of your offer. So please don't get my hopes up by offering to help and then not follow through.

Don't point out my failings

Yes, I can see the less-than-perfect state of my home. This might lead you to think I have the housekeeping disease du jour, but let me assure you I do not. I have chronic pain and chronic fatigue and you have no idea how much this truly limits me each day. So please don't fault me for using my two to four hours a day of activity time on things I enjoy doing instead of housework.

Don't ignore my directions

Yes, you are doing me a favor. Yes, I am grateful for the help. But just because I need help, doesn't mean I can't ask you to follow my directions and supervised you in the process.

Don't do the things I can do myself

Another problem I have run into in asking someone to help me is that invariably they start doing the things I can do myself and avoiding the things I really need them to do for me. It might seem unfair that I do the easy stuff and you do the heavy lifting, but that is my reality--I have physical limitations. Translation: I am not a slacker!

Don't think I should be happy with whatever help you decide to give me

Just because I have to ask for help doesn't mean I have to lower my standards. I still have my preferences and my way of doing things, even if I have to rely on others now to get the actual work done. Yes, I realize that I may have to compromise, but compromise doesn't mean you call all the shots and I have to put up with whatever help you decide to give me.

Don't treat me like an invalid

Just because I need your help doesn't mean I want to be treated like a child or an incompetent person. I want to participate as much as possible, even if that means just sitting in the same room with you and watching what you are doing. In addition, I retain my rights to make my own choices and express my preferences; so please don't speak for me or make choices for me.

And by the way, unless I specifically ask you, please don't hold my arm, direct my movements or pet my head. (Don't ask ... and yes, these things have happened to me.)

Don't give me attitude

I really get it that asking for help creates a weird dynamic between us. If I tell you what to do, you might think I am being bossy. If I supervise you, you might think I don't trust you. If I get grumpy in the process, you might not recognize that I am getting tired or sore and need to take a break. If I take a break and lay down, you might think I am being lazy. If I ask you to do the heavy lifting, you might think I am trying to weasel out of the hard stuff.

Please, I beg of you, don't go there. I am not trying to be difficult, demanding or dictatorial. I just really want to get some things done with your help.

In closing, let me say that I truly wish I did not need to ask for so much help with my day-to-day life. Deep down, I truly feel frustrated that I can't do everything for myself. Just know that this is my reality, created by my multiple chronic illnesses, and it only hurts me to pretend and deny that I need your help.

On the other hand, please don't make me feel less than when I find the courage to ask for and accept your help.


Click Add Your Comment and let me know your response to what I have to say about asking for help.

My Dream Job

I'm up, dressed and ready to get my day going. I've assessed that today is a good day, a good day to call in to work and see what opportunities they have for me.

"Hello, Selena," the voice on the other end of the phone cheerfully greets me. "Are you able to work today?"

"Why yes, yes I am," I reply.

"How many hours of work are you looking for today?" my liaison asks.

I pause for a moment just to reassess how I feel today. My pain level right now is about a 6, my fatigue level is about the same. I got a good night's sleep, which definitely helps. No errands or doctor's appointments today, so my schedule is free. Yeah, I can do this...

"I'd like 90 minutes of work today," I respond.

"Great. Here are the opportunities available to you today, based of course on your skills assessment:

• You can staff the Wacky Farms turkey hotline. Log into the company website and type 'Wacky Farms' into the job ID search screen. You will be directed to the call handling information tree. Simply call into the system and enter your ID whenever you are ready to take a call and a caller will be routed to you. The system will track your call time and advise you when you have reached 90 minutes.
• You can conduct Internet research for a client on moringa oleifera, also called The Miracle Tree. The client is looking for a list of links to scientific articles that reference moringa oleifera. Simply log into the company website, type 'Internet research + Miracle Tree' into the job ID search screen and use the company browser to conduct your research. Hit pause whenever you need to take a break. The system will track your research time and advise you when you have reached 90 minutes. This is step one in a multiple tiered project that includes reading the articles and write a synopsis of the information, which you are eligible to take as an assignment for the next two weeks.
• Or you can locate the best deals on the Internet for buying several different items, including an iPod Touch, a Sony 52" flat panel TV and a used Slacker Radio G2 40 station portable music player. Part of the assignment is to look for valid discount codes that can be used towards the purchase. Simply log into the company website, type 'best deals' into the job ID search screen and use the company browser to conduct your research. Hit pause whenever you need to take a break. The system will track your time and advise you when you have reached 90 minutes.

"Hmm, let me see, I think I'd like to work the Wacky Farms turkey hotline today."

"Great, Selena, let's get you started...."

Yes, this is a dream. But today I am going to ask the question, "Why can't this be a real job opportunity for people with disabilities?"

Today I am writing my blog post in support of Empowering People with Disabilities Day, a Bloggers Unite event. As the organizers state:

One in every five Americans is affected by a disability. This means that approximately 54 million people in the U.S. alone are working everyday to gain greater independence and create new possibilities for themselves.

Within the United States, the Americans with Disabilities Act (ADA) has done much to eliminate the barriers and discrimination people with disabilities have faced for so long. Yet, about three quarters of adults with disabilities are unemployed--even though most would prefer to be working. And, internet access for people with disabilities is about half of what it is for those without disabilities.

Clearly there is still a lot of work to be done if we want people with disabilities to be truly empowered!

I almost don't want to admit it, but I am one of those persons with disabilities that is unemployed. I receive Social Security Disability benefits, but my check is no where near the amount of money I used to make when I was employed. My chronic pain and chronic fatigue really limit how much I can do in a day and make me more home bound that I care to admit.

But wouldn't it be wonderful if there was an employer like the one in my fiction above that could match me to jobs that fit my skills and time availability? An employer that understood my need for flexibility in both work schedule and in my approach to getting a task done? An employer that encouraged me to work from home when I could and didn't penalize me when my health did not allow me to accept an assignment? An employer who recognized that I still had things to contribute to society even though I am disabled?

It really is a BIG dream, but today on Empowering People with Disabilities Day, I am going to allow myself to dream big because I know there are many more people out there who wish society could accommodate us more, beyond handicapped parking spaces and some limited protections in the workplace. I want to be a part of society, even if my participation takes place mostly inside my home. I want to be a valued member of society, even if I can only contribute a few hours a week to work pursuits. I want to be all that I can be, even if that looks much smaller than what most people can accomplish.

Please help empower people with disabilities and allow us to make our dreams a reality too.

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What If I Could Go Back to Work?

Image by ForestForTrees via Flickr

You might be surprised that I actually think about working from time to time. I know that I spend a lot of time here at OMA&P! talking about all the chronic illnesses I manage and sharing my tips for making life more fibro-friendly. I perhaps have failed to mention that prior to life with fibromyalgia, chronic pain and fatigue, I worked full time for over 10 years when I only had type 2 diabetes, chronic Hepatitis C and cancer survivorship issues. Unfortunately fibromyalgia has been the deal breaker, disabling me and making me unable to work. But that doesn't stop me from wondering every once in a while: What if, one day, I could go back to work?

You see, the truth is I miss going to work each day. And I miss much more than the paycheck. I miss the social interaction, having colleagues and spending my lunch and break times socializing with other people. I miss the sense of accomplishment I got working on tasks, projects and from getting things done. I miss developing my career, gaining experience, moving along my career path and striving towards my long term goals.

What would it take for me to go back to work in my current condition? I'm not entirely sure, but I have some thoughts on the subject. My preliminary list of requirements for working while disabled include:

• A job I can do from home
• Hours that I set for myself
  
• Tasks that are amenable to being done in 15 minute work sessions
  
• Control of deadlines or due dates, so I can give myself plenty of time to complete tasks and review my work before I submit it
• The ability to set work aside for a day or a week (or two) when I get a cold/flu, brain fog or a fibromyalgia flare-up
• A back-up plan to potentially hand off an assignment to someone else if I am unable to complete it on time
  
• Projects that use my hands sparingly, so as not to aggravate my thoracic outlet syndrome symptoms
• Work that doesn't require a lot of time on the telephone
• Assignments that are simple, straight-forward and require only a moderate amount of brain power
• And lastly, at this time, a position that only require up to 5 hours of work per week
  

To be honest, I am not sure what kind of job fits this list of requirements. Even if I could find a job that fits, I would need to consider what other activities would I have to give up in order to fit work into the available energy I possess. I estimate, using the rating scale at the CFIDS and Fibromyalgia Self Help website, that my current level of functioning averages around 30% of my previous, healthy normal. What that means, in practical terms, I that I have moderate to severe symptoms almost all the time, I am able to leave the house several times a week (but not daily), I can do around 2 hours of activities a day and I require many rest breaks during the day. Realistically, I probably need to be closer to 50 and 60% of normal for work to really be a possibility.

This whole exercise seems to reinforce my initial thoughts that my ability to return to work is dependent on an improvement in my symptoms and level of functioning. But that won't stop me from wondering right now what my life might be like if I just got 20 to 30% better, another big "what if?" Despite all the uncertainty about my future health, I refuse to give up hope and stop wondering "what if?" After all, what if your thoughts create your reality? If I have a choice, and I always do, I chose to believe that one day I will figure out how to go back to work despite my disabilities. Perhaps all I need is some more time to figured out what jobs work for me now and how I'll get them.


Do you ever think about what it would take to go back to work now that you are disabled? Share your thoughts on the subject by leaving me a comment.

Let's Stop Selling Health Insurance...

Image by SavaTheAggie via Flickr

I'm really not an expert on health care reform, but something clicked when I starting writing about it on Monday and I find myself with more to say.

This post is inspired by the graphic you see at the top, the image of the house on fire. The caption reads: PRE-EXISTING CONDITION--"Hello? My house is on fire and I'd like to buy a fire insurance policy. 911? Nah, the government says insurance companies must cover all pre-existing conditions now. It's not like I should have to pay for it."

This illustrates the problem with calling health care coverage "health insurance."

Insurance implies that there is a risk from which you need to be protected. So, you take out insurance to hedge your bets and guard against the bad thing from happening. That's why homeowners' buy fire insurance, motorists buy car insurance and people worried about providing for their families in the event of their death get life insurance. The insurance companies aren't stupid. They hire people to figure out the risks of offering such coverage to you with an eye on the costs and the goal of making a profit. So obviously, no one is going to sell you insurance if your house is already on fire, you just got into a car accident or your spouse just died.

I guess some people view health care the same way. For those who consider themselves healthy, "health insurance" is something they have "just in case" they get sick. So I can see someone with this point of view on health insurance putting together a poster like the one at the top of this post.

Then there are people like me. I admit that I really don't need "health insurance." I already have health problems, so insuring my health, i.e. gambling that I am going to stay healthy and not need medical care, is literally like closing the barn door after all the animals have escaped. What I need is ongoing access to health care. Without it, I have no support for all the things I need to do to manage my multiple chronic health problems.

If your house burns down, you have choices. You can walk away. You can rebuild. You can tear down what remains and leave an empty lot. You can sell what is left.

People are not like houses.

When we become ill or injured, we need medical care. The whole profession of medicine exists because of our societal commitment to the treatment of the sick and infirm. We do not abandon people when they are ill, like animals do when a member of the herd becomes sick or injured. We stand by them, help them and do what we can to help.

So why do we denied people with pre-existing medical conditions the ongoing access to the means to manage their health problems and ease their suffering? Why do we forget that some of people who utilize the health care system the most are people who live off disability checks and therefore not in a position to pay more to access health care?

Clearly there are multiple problems. There are also disturbing reports in the news that health insurers are already looking at ways to skirt the new provisions to end the denial of health insurance coverage to those with pre-existing conditions. This is why, in a nutshell, I think the emphasis on "health insurance" in the health care reform bill is not the smartest choice of words or concepts.

I know I am probably not qualified to solve these problems, but may I humbly suggest perhaps one small step towards fixing this problem?

Let's start by acknowledging that we all need to go to the doctor, even those of us who consider ourselves healthy. Let's agree that health care services need to be part of everyone's lives, from birth to death, in sickness and in health, to prevent and treat illness and disease. Let's stop selling "health insurance" and start asking everyone to pay for access to the health care system. Then let's talk about making it so that everyone can afford access to health care. Let's agree that health care for all is a goal our enlightened and compassionate society strives towards and is willing to pay for, together, as one united nation of people.

That said, I'm not sure what our health care solution should look like. Philosophically, we seem to be torn between "united we stand" and "pull yourself up by your boot straps" when it comes to solving our social problems. I feel if we could just get over the first hurdle and agree that health care for all is our goal and that we all need to be in this together, we can figure out our own uniquely American solution to this problem.

Agree? Disagree? I want to hear what you have to say so leave me a comment.

Do I have any hobbies or interests?

Image by Strikkelise via Flickr

In completing my continuing disability review paperwork for Social Security, I admit I was struck by the absurdity of some of the questions. Like this one: Do you have hobbies and interests? At first glance, I couldn't imagine answering NO to this question. I mean, come one, I am still alive and engaged in life. Hobbies and interests comprise the 'fun stuff' I do every day that keep me feeling like life is still worth living, even if I can't do all the things I used to be able to do.

Then I thought, 'Wait a minute, is this a trick question where they are going to say I could turn my hobbies into a job and no longer be eligible for benefits?' Yes, being on disability makes me feel vulnerable and a bit paranoid that at any moment my benefits could be taken away. I know this is probably irrational thinking on my part, but when you have FIBROMYALGIA, the mystery illness that not everyone believes exists, it seems I spend a lot of time explaining I am disabled even if I don't look sick.

So I answered the question with a YES and then got real with myself when answering the second part of the question: Please describe what they are and how much time you spend doing them. Here is my answer:

• bird watching in my backyard (a few minutes each day)
• container gardening (1 to 1 1/2 hrs/week in the Spring/Summer)
• watching nature and science shows on PBS (2-4 hours a week)
• loom knitting (30 minutes/week in Fall/Winter)
• reading (about 1 book a month)
• writing--made possible by Dragon Naturally Speaking software on my computer (15 to 30 minutes a day)
• teaching my dog tricks (5-10 minutes a day)

Sadly, it's not the list I would have written six years ago. Heck, this isn't the life I had six years ago. Yet, as I review this list now, I think I actually forgot to add a few other fun things I do on a daily/weekly/monthly basis. I guess my excuse is that completing this paperwork when I had a cold made it difficult to think.

I hope the reviewer can see that I am trying my best to adjust to this new life with chronic illness by developing new, fibro-friendly interests and hobbies. Conversely, just because I have interests and hobbies doesn't mean I can work. Most of all, completing this task made me acknowledge once again that I would so much rather be healthy and working than completing pages of paperwork detailing how my life has changed and is now filled with much less...

Funny, but they don't ask a question that would get them this kind of response on their forms.

The Anniversary Effect

Image by N-ino via Flickr

Today is the fifth anniversary of the trip-and-fall accident that changed my life. Five years ago I began my new life with invisible, chronic, disabling illnesses. Because of what happened five years ago, I now write this blog, Oh My Aches and Pains! my life ... with chronic illness.

Psychologists note: The original feelings and reactions to the event often re-emerged on the anniversary. With joyful events, such as births and weddings, the anniversaries are often times of celebrations. But with traumatic experiences ... an anniversary can be a difficult and painful time.

I reflect today on the past five years and these are my thoughts:

• I continue to be amazed at the fact that a trip-and-fall accident could totally and completely change my life.
  
• I can't help but wonder with amazement and disappointment at the fact that my symptoms have not improved in five years.
  
• I acknowledge that in the past five years I have learned how to better adapt to and better cope with my illnesses, but I am not "better" and I still want to be "better."
  
• I also realize that, in five years, I have forgotten what it feels like to live without chronic and severe pain and fatigue. I can not remember what it is like to be "normal" and I still want to be "normal."

Yes, it's a painful and difficult time, this fifth anniversary. So just for today, I will stop and spend some time grieving my losses. Then tomorrow I will resume my quest to learn how to live my best life despite chronic illness.

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When You Have Cancer: Tips for Coping (part 2)

I just got off the phone last night with my sister Cyndie, who told me her friend Val is having surgery tomorrow to remove a very small breast cancer tumor. Val wanted to talk to me back in August after her routine mammogram found the tumor. She wanted clarification about the technical terms her doctor used to describe her type of breast cancer. Since I am familiar with some of the terminology and I am good at Internet research, I felt both honored by her request and capable of helping her get answers to her questions.

I am keeping Val in my thoughts and prays today and
I am continuing my series of tips for coping when you have cancer in her honor:

• Some doctors have the worst bedside manner. If you happen to encounter one of these doctors, please don't let them discourage you or disuade you from treating your cancer. Talk to this doctor's other patients while in the waiting room and compare notes. Talk to the nurses and other professionals in the office about your concerns. Exercise your right to a second opinion. If you are stuck with this doctor, trying turning your disgust and discouragement into extra determination to win your fight so you won't need their services anymore.
• Ask to meet with the oncology social worker. Social workers can provide a wealth of information about the practical and everyday aspects of living with cancer like disability benefits, referrals to support groups, program and services available to persons living with cancer, referrals to individual, couples and family counseling and home health care services. Unfortunately, due to under staffing and the high patient numbers, the social worker may not have the time to come and introduce themselves to you. So be proactive, ask to see them and ask them how they can help you!
  
• Reward your medical team with small tokens of your appreciation. The nurses, doctors and others in the field of oncology are some of the hardest working medical professionals. Having a bowl of candy (or a jug of jelly beans from Costco) in your hospital room or bringing some cookies (store-bought are fine!) to clinic are nice ways to say 'I notice and appreciate your hard work and caring.'
  
• Don't take it personally when the people around you act weirdly in response to your cancer diagnosis. For some people, their family and friends rally around them, which can be wonderfully reassuring or smothering. For others, they find that suddenly friends and family disappear or avoid them, which can be devastating or better than having them hovering around you. Sometimes it's a combination of these two extremes. However your friends and family respond, their reaction is really all about them, not you.
• Take what other people have to say about your cancer with a grain of salt. Sometimes even the most well-intentioned people say the most hideous things about how and why you got cancer, like, "You were burning the candle at both ends." or "God must be upset with you." Again, whatever they say, remember that these statements have little to do with you and a lot to do with how poorly these people are dealing with your cancer diagnosis.
• Give yourself permission to put your needs in front of everyone else's needs. You are fighting a life-threatening illness and, for right now, you need to be your number one priority. Remember you can't take care of anyone else unless you take care of yourself first.
  
• Be willing to reject the advice of the countless self-help authors who write about the subject of cancer if what they say doesn't work for you. Back in 1988, Love, Medicine and Miracles was a bestseller and was given to me as a gift after I was diagnosed. In the book, author Bernie Siegel, MD asks the reader 'why do you need cancer in your life?' Needless to say, I was mortified. For some people, learning how you can think yourself sick or well might work for them. It didn't work for me.
• Be very careful about alternative treatments for cancer, especially treatments that advocate the discontinuation of traditional treatments like surgery, chemotherapy and radiation. In addition, talk to your doctor about any vitamin and mineral supplements and herbal products you may be taking, as they may cause serious side effects in combination with prescription medications and/or chemotherapy.
  
• Be extra cautious when your blood counts are low from treatment: you are more susceptible to infection. Postpone your night out dancing or your trip to the mall until your counts rebound. If you need to wear a mask when out in public, consider buying your own supply of N95 respirator masks. Recent studies show that the surgical masks many patients are provided are not as effective as the N95 respirator mask in protecting you from cold and flu viruses.
• If you need to be hospitalized, be sure to take along some distractions and decorations for your room. When you are feeling up to it, it is better to fill your time there with a good book, good music, a game to play or a movie to watch. Bring along pictures of your loved ones, your pets or a drawing from a child close to you. Better yet, bring art supplies to make your own drawings. Bring along some of your own clothes, slippers, bathrobe, etc. Not only will bringing along your personal items from home make you feel more at ease, it helps the medical professionals taking care of you see beyond your cancer to the person you truly are.
  

That's all for today. I'll be back tomorrow with my recommendations for a variety of helpful resources. In the meantime, please leave me a comment with your reactions, questions, suggestions and your tips for coping with cancer. And please send some healing thoughts in Val's direction today.