Tag Archives: Resources

Keeping Track of Everything

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I need to find an effective way to keep track of my wife’s medical history. I’m not just talking about insurance papers or prescription records. I have all of that stuff covered. I need a way to keep track of medicine, symptoms, doctor visits, sleep patterns, and more. I also want to be able to look at this information and quickly identify trends and possible correlations between events, symptoms, and medications. Ideally, I would be able to do all of this from my phone.

Well, if such a application exists, I have yet to find it. I’m afraid that I may just have to create one.

Any system for charting or logging health information should have some portability and while I would love to be able to use my phone for this, I don’t think I want to have to transfer information from my phone into a spreadsheet, which is where I think the data will eventually reside. I’m going to start with a small notebook, like a Moleskine Ruled Notebook, which I’ve used before to record information on projects or things I’m writing.

Since there’s so much information regarding medicine that taken daily, I figure what I will do is only record changes in medicine. For example, if a new medication is added, I will make a note of it, or if Jenny forgets to take something on a particular day.

I can track particular symptoms, like fever or nausea, by just making a note of it on that day. The trick is going to be how to do that without having to keep too much detail.

I am also going to try and record things numerically using a scaled score. This is all pretty subjective, but maybe it will be helpful the next time something happens and we are wondering why.

All of this data will have to go into a spreadsheet. If I create one using Google Apps, then I will share the template with anyone who is interested.

Lupus Research

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Like many of you, I have a hard time keeping up with what’s going on in lupus research.

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.

Flexible Spending Accounts

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It’s been, and continues to be, a very busy month. Taxes are always a lot of fun around here, and I have to make sure that we’ve spent all of the funds from our flex account. I hope many of you have the opportunity to participate in a flex spending program. For those who don’t have experience with them, I have yanked this from the internet, the deep yet often questionable font of immediately gratifying wisdom:

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.

Medical piggy bankFlexible 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.

New Fibromyalgia Blog

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I came across a relatively new blog that gives tips for dealing with fibromyalgia and chronic fatigue. Here’s a bit from a post about preventing brain or fibro fog:

  1. Always Keep your keys and purse on the same hook or in the same place.
  2. Make lists, prioritize, and complete them if you can while you are feeling better.
  3. Try to take on and finish important things during your best times without overdoing it by scheduling too much.

The blog, Fibromyalgia and Chronic Fatigue Tips, is a part of selfhelpmagazine.com and is written by Robin August, PhD.

The poll is doing quite well. I certainly have never gotten that many contributions to a regular post. I’m going to give it another week and then discuss the results, so if you haven’t voted yet, you should get on it.