In order to make that a little easier, I’ve added a sidebar widget that provides updates from the Lupus Research Institute. If you move your mouse over a particular news item, you will be able to see a short snippet of the article. If it seems like something you’re interested in reading, you can click the link and read the actual article.

I spent a little time on the Lupus Research Institute website yesterday, reading some comments made by Dr. Bevra Hahn regarding the new lupus drug Benlysta:

These new results show that administration of Benlysta for one year, in addition to standard treatments for SLE, resulted in substantial improvement in almost 60% of people, compared to only 46% in the group that received placebo plus standard care; the improvement included better quality of life.

I had the good fortune to meet Dr. Hahn a few years ago at a health conference where she was featured as a guest speaker. I was really impressed with her. I have nothing but great things to say about the medical staff at UCLA. It is a very long drive from Fresno to Los Angeles, but it is worth it to get such great medical care. Jenny’s rheumatologist is fabulous.

I hope the sidebar widget makes it easier to stay up with the latest lupus news. I don’t want to overwhelm the site with too much information, but it’s good to stay informed.

A flexible spending arrangement (FSA), or Flexible Spending Account, as they are commonly called, is one of a number of tax-advantaged financial accounts that can be set up through a cafeteria plan of an employer in the United States. An FSA allows an employee to set aside a portion of his or her earnings to pay for qualified expenses as established in the cafeteria plan, most commonly for medical expenses but often for dependent care or other expenses. Money deducted from an employee’s pay into an FSA is not subject to payroll taxes, resulting in a substantial payroll tax savings. – Wikipedia

We’ve had a flex account for about six years now. It makes sense for us since we never spend enough on medical bills to make the write off on our taxes, but we come pretty close. The flex account allows me to lower my take home taxable pay and put that money to good use paying for medication.

Flexible spending accounts are a use-it-or-lose-it endeavor in record keeping. If you don’t submit receipts by the yearly deadline, then that money is lost. I know of some people who just accumulate records throughout the year and submit them at the end, but I submit receipts every month. I think it’s a good habit to stay on top of it in case there is a dispute or something.

We get all of our medication through Walgreens, which has great online support. At the end of each month, I just print out a record of Jenny’s medications and send it off to the flex account folks and they reimburse me by direct deposit. For office visits or the occasional hospital stay, I just submit the paperwork that I receive from my insurance company.

If you are not already involved in a flexible spending program, I would certainly recommend you check into one. It’s made a huge difference for us. Living with lupus is a long term battle and every bit of help counts.

I was just taking a look at the beta from Google, Google Health, which is an application to track your health information in a central location.

According to the FAQ,

Google Health offers a single location to consolidate and store your medical records and personal health information. Saving medical information in one secure location helps you and your doctors have accurate and up-to-date information about your health when you need it the most. This in turn means that your medical treatments may be safer and more effective. You can also use Google Health to access a host of online services and tools, from a variety of third-party companies, that can help you better manage your care.

I have some mixed feelings about this application. I do think that it would be convenient to have all of our medical records in a single location. Google won me over a couple of years ago, and I use three or four of their applications every day. I suppose I have some concern over privacy issues, but I imagine that the online security will be better than our pharmacy. My only concern would be the use of the host of online services and tools.

There’s a whole lot of conflicting information out here on the internet, and I worry about people using these online services to do a bit too much self-diagnosis.

What do you guys think? Do you use any of the online medical applications? Do you tend to self-diagnose?

I know many of you know about this already, but I thought I would mention it for anyone who didn’t.

You can find answers to many common questions in the same section. Here’s a good example:

Q: How common is it to have both Lupus and RA?

A: Believe it or not, it is more common than you think to have more than one disease. This is called overlapping connective tissue diseases. The connective tissue diseases are a family of closely related disorders. They include: Rheumatoid Arthritis (RA), Systemic Lupus Erythematosus (SLE or lupus), Polymyositis-Dermatomyositis (PM-DM), Systemic Sclerosis (SSc or scleroderma), Sjogren’s Syndrome (SS), and various forms of Vasculitis. Although lupus most often occurs alone, many people with lupus also have symptoms characteristic of one or more of the other connective tissue diseases. In this circumstance, a physician may use the term “overlap” to describe the illness. There are several well-recognized overlaps that may affect people with lupus this includes the overlap of SLE and RA.

Strangely enough, I haven’t submitted a question yet. I tend to just look things up. Has anyone used this service to ask a specific question? If so, how long did it take to get a response?

I posted in the introduction thread, but I really hesitated before doing it. I looked around and all the posts are by people diagnosed with lupus. There is no forum for spouses or friends and family. There is a forum for men, but it’s for men who have lupus.

Am I spinning my wheels here? Or is it just too early to judge?

According to the Lupus Foundation of America,

• Several studies reveal that the annual average cost to provide medical treatment for a person with lupus ranges between $6,000 and $10,000. For some people with lupus, however, medical costs may exceed several thousand dollars every month.
• Two of three lupus patients reported a complete or partial loss of their income because they are unable to work due to complications of lupus.
• One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
• In a nationwide poll of 1,000 adults conducted for the Lupus Foundation of America, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
• In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
• While 65% of respondents to this survey claimed awareness of lupus, only 20% could offer accurate basic information about the disease.
• People with lupus named other family members (84%) and friends (72%) as their primary support network.
• The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.

Lupus impacts an individual on both a personal and economic level. The disease effects them, their families, and their loved ones on a daily basis. This site is dedicated to creating a community of support for lupus patients and their friends and families. It is our goal to provide a forum for discussion of lupus related issues, and to provide a safe haven of support and understanding for everyone whose life is effected by lupus.