Help solve the Cruel Mystery

I know I’ve said raising awareness is the purpose of this blog, why I walk, why I share my story. But let’s be honest to further lupus research and lupus treatments we need money.

There are plenty of ways to donate:

My walk page is still open until the end of May

Make a general donation to the Lupus Foundation of America

Funds donated to the Lupus Foundation of America go to medical research, patient support programs, community education, and advocacy for public policies. The LFA has been instrumental in providing support services for me. I don’t know how I managed this disease for so long without the help of my local chapter.

Make a donation to the Alliance for Lupus Research

100% of the donations to the ALR fund lupus research. Since 1999 the ALR has given $81 million to 159 research programs. One of their funded programs (the study of B-cells) helped pave the way for Benlysta, the first lupus drug in a century.

Purchase one of these awesome shirts and $8 of every sale goes to the ALR.

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No donation is too small. Even the change between the couch cushions helps. Thank you to those of you who have donated, and thank you in advance to those who intend to donate.


My first lupus walk

This weekend was the Walk to End Lupus Now in Atlanta. Despite having lupus for more than a decade, this was my first lupus walk.

I arrived at Piedmont Park not knowing what to expect. The Atlanta walk is different than most other fundraising walks. For starters, the walk doesn’t start until 5pm allowing for a full afternoon of picnics, entertainment, and general celebration of the cause. Atlanta is the largest lupus walk in the country with more than 8,000 people in attendance.


While I was a top fundraiser for many weeks, I fell from the top ten. (My competitive nature didn’t like that). But, I’m happy to report I raised $2,731 for the Lupus Foundation of America.


I wouldn’t say I was aggressive in my fundraising efforts. Besides the Lupus Awareness game at Oregon, I posted messages to Facebook and Twitter, and sent emails to friends. I was blown away by the support of friends; friends who I haven’t spoken to since high school; Sean’s friends whom I’ve never met; parents of my brother’s friends.  I loved it when an email hit my inbox that said “Congratulations you’ve received a donation” generated automatically from my walk page.

The best part of the whole day was having my friends show up to walk with me. I didn’t even have to ask, they wanted to be there. They brought friends and along the walk route wanted to know more about my disease and how it affects me. That means more to me than any amount of money.




A huge thank you to everyone who donated. I appreciate it more than words can express.

How to get Social Security Disability

We’ve all had those “lupie” days where we can’t get out of bed no matter how hard we try. We’ve all missed too much work or missed an important deadline because of lupus. I fear the day I can’t work for an extended period of time or lose my health insurance.

This weekend I had the pleasure of listening to disability attorney Winnie Pannell speak to our Lupus Support Group. I’ve met Winnie before and she is a hoot. Saturday’s topic was more serious: how to go about receiving Social Security Disability.

Before you can even think about applying, make sure you have paid into Social Security (or its official name: FICA) for 5 years or 20 quarters out of the past 10 years. If you are self-employed or a contractor, the amount of income you earn can translate into required quarters.

There are two types of Social Security Disability. DIB and SSI.

DIB: Monthly benefits will start after the fifth month of disability and will receive Medicare which will start after 29 months (5 month waiting period, plus 24 months on DIB).

  • you must prove you became disabled before your FICA eligibility runs out.
  • you will not receive more than 12 months of previous benefits. It is important to file as soon as you lose your job or become disabled as your benefits will only be retroactive 12 months before you filing date.
  • COBRA benefits from your former employer last 18 months. If you receive Social Security you are eligible to extend COBRA an extra 11 months to bridge the 29 month gap before Medicare kicks in.

SSI: As Winnie explains in the video, most of the time the Social Security process has drained a person’s assets so that, excluding their house and their car, they have less than the required amount in savings. SSI beneficiaries will receive Medicaid.

The application is pretty complicated but you can complete it online. You can’t just say “I’m sick and can’t work” you have to prove it. Thus the importance of keeping detailed records:

  • Ask for copies of all doctors notes, including the date and time of your visit as well as what was discussed.
  • Take your own notes to the doctor, listing your symptoms, pain rates and dates. Not only does this help your Social Security case but also gives your doctor an easy reference of your symptoms to better assist in your care.
  • Dates you missed work and any notices from work regarding your absence or tardiness.
  • Photographs of physical manifestations of lupus. Rashes, hair loss, jaundice, swelling, etc. You may not feel like having your picture taken, but it is critical to show how bad it can get compared to healthy pictures of you.
  • A journal of your symptoms or your feelings each day. Miss a dinner with friends because you were in bed? Write it down. Can’t cook and order in? Write it down.
  • Letters from loved ones detailing how you used to be. Did you used to be an athlete and now you can’t walk the dog? Have your spouse or loved one describe that. Often it’s more powerful coming from someone else.
  • Document the date, time, and name of everyone you speak with regarding your Social Security case.
  • Get a certified mail receipt for everything you send the Social Security office.
  • Make copies of everything you send the Social Security office.

It is important to note, 74% of all Social Security claims are denied and 84% of appeals are denied as well. Don’t give up. After the appeal is denied, you have 60 days to request a hearing. It is only at this point in the process you are required to have a lawyer. During the hearing you must answer five questions:

  1. Are you working? If yes, then your case is dismissed.
  2. Do you have a severe impairment that will last more than a year or result in death? Yes, there is no cure for lupus.
  3. Is the condition “listed” in the CFR or of equal severity? The listing for lupus means you must have involvement of two or more organs, one of which is moderate to severe involvement, and you must have two of the following: severe fatigue, fever, malaise or involuntary weight loss. Or, you must show repeated symptoms of lupus with at least two of the following: limits in daily living activities, limits in maintaining social functioning, or limits in completing tasks in a timely manner due to deficiencies in concentration, persistence and pace.
  4. Does the condition prevent former employment? Can you go back to any job you held in the last 15 years? If yes, then your case is dismissed.
  5. Does the condition prevent other gainful employment? Must answer no to get Social Security.

For question 4 and 5, most experts will say you are not employable if you miss 2 or more days of work per month. It is important to prove in the hearing that you cannot work due to increased absence, the unpredictability of lupus, the lupus fog, and depression from lupus or mood swings from medicinal side effects. All of this goes back to the importance of medical records.

Getting Social Security Disability does not mean you’ll be a “freeloader” forever. Frankly I don’t think you’ll be freeloading at all, you pay into the system, it is there if you need it. But, the majority of people want to work. There is a trial work period which is 9 non-consecutive months to test the waters. If you earn more than $1,040 per month (minus medical expenses) then you are deemed employable again and are no longer disabled.

In most cases, if you have not medically improved, but are able to return to some form of work, Medicare benefits will continue for at least 93 months. These 93 months will start the month after the last month of your trial work period. While your Social Security cash benefits will cease, you will still be covered under Medicare insurance.

If you can work, there are plenty of things your employer can do to make work easier. Now this all depends on how you breach the subject with your employer, but larger companies are often more apt to work with you than smaller ones.

  • Placing a filter over bright lights
  • Utilizing voice activation software to type
  • Working from home
  • Rest periods throughout the day

Of course, every employer differs and some may be more empathetic and compassionate than others. It is best to look up your employers’ policy as well as having a doctors note when making any requests.

If you would like to apply for Social Security you can now do so online:

If you’re in Georgia and would like more help from Winnie and her office you can find more info at