Hey gang, apologies for my sporadic posting lately. It seems that after I came down with a virus in September that I have not been good about getting myself back on a regular posting schedule. I think it’s a combination of simply being quite busy and also feeling spent at the end of the day. I come home from working eight hours and just want to veg, but then, of course, feel bad about just vegging because there are twenty other things I “should” be doing. It’s not like someone is standing over me, wagging their finger saying, “Sheryl, you should be cleaning your kitchen.” It’s always my voice that just can’t seem to give myself a break. Argh, I think I will be working on managing (and talking back to) that voice for the rest of my life. I digress…

The good news is, I’m back in action and committed to resuming my regular postings. Please feel free to join the discussion and comment. I’d love to hear from you!

I’ve had rheumatoid arthritis for 11 years. I’ve been taking medication twice a day now for about that length of time, yet sometimes I simply forget to take it. I’m a bit embarrassed to admit this because it seems sort of ridiculous to me, but I’m sure I’m not the only one. Well, I hope I’m not the only one!

According to a New York Times article I was reading over the weekend, “busy people can forget to take their medications.” Good. I’m not the only one. A Silicon Valley company (Zume Life) is testing a new device called Zuri that will help you remember to take your meds, while also keeping track of symptoms, diet, exercise, and other health information. All of this data can then be uploaded to a website. The geek in me thinks this is pretty nifty.

The Zuri will not be cheap, though. It will retail at around $200 and the monthly fee for web services will run about $40 to $50 a month. Whoa! Basically, it’s like having another cell phone. Perhaps other companies will begin to develop similar devices and, eventually, we’ll have a variety of devices to choose from, at various prices, to suit our needs.

I really like the concept, but I don’t think this is something I’d buy. Busy people do not need another device to carry around that costs as much as their cell phone. The article mentions an iPhone application that is currently in the works by the same company. Now, this is more appealing… especially since I’m looking for more reasons to justify plunking down the money for an iPhone.

I can definitely see the benefits of the Zuri, and I think it could be especially useful for caregivers. This article has inspired me to do a little web surfing to see what is out there that might help me capture my day-to-day health information. Once I find some other options, I will report back.

I am intrigued, though, and I think a device like this could really improve self-care. Kudos to Zume Life for developing something innovative!

NY Times Article on Zuri
Zume Life

The New York Times recently ran a piece discussing chameleon-like qualities of Sjögren’s syndrome. I learned a lot from this article and wanted to highlight it here to raise awareness.

Sjögren’s symptoms often suggest a variety of other diseases, and doctor’s simply miss it. But things are changing.

No longer listed in the National Organization for Rare Disorders registry, Sjögren’s is now considered the second-most common autoimmune disease, right behind rheumatoid arthritis. On average, though, it takes six years to obtain a diagnosis. In that time, vital organs can be damaged. That right there is reason enough to highlight this tricky disease. I encourage you to read the full article here to learn more.

Hello fellow arthritis friends! I have been under the weather lately and have been quite remiss in following my schedule of regular postings. I came down with a virus about two weeks ago, which kept me off my regular dose of Enbrel, which in turn cause a bit of a flare. Ah, the fun of having a weakened immune system! But I am feeling better and am back in action.

Here is a USA Today article to get you started with. This piece offers some basic solutions on managing osteoarthritis.

"Most people accept osteoarthritis as a part of aging and have this misperception that there’s nothing you can do," says Patience White, chief public health officer for the Arthritis Foundation and a rheumatologist in Washington, D.C. "There is no quick fix, but there are things you can do."

The six tips are as follows:

1. Watch your weight.
2. Keep moving.
3. Treat your pain.
4. Try a supplement.
5. See a physical therapist.
6. Don’t rule out surgery.

I’m adding a seventh tip: Know your disease. Learn all you can about your disease and the recommended treatments. Ask your doctor questions. Get second opinions. Talk to other people who have Osteoarthritis. It’s trite, but true: knowledge is power.

If you have a tip, please share it in the comments.

Hello loyal readers and new friends! I greet you with great news from the Arthritis Foundation:

The unbelievable and miraculous has occurred – we have just gotten word that the US House of Representatives has scheduled a vote expected tomorrow, Thursday on the House floor on HR 1283, the Arthritis Prevention, Control and Cure Act. Thanks to all of you for your hard work these past 5 years, but your work is not yet done. We need to make sure that if a recorded vote is requested and taken on this bill that 2/3 of the Members of the US House of Representatives vote YES. Being a co-sponsor of the arthritis bill does not guarantee a Member of Congress will vote YES when it reaches the floor, nor does a non-co-sponsor indicate he or she will vote against it. For those of you with Members of Congress who have not co-sponsored but have indicated they would vote yes when it reaches the House floor, now is their chance to support the bill.

PLEASE CALL YOUR REPRESENTATIVE ON THURSDAY MORNING OR AS SOON AS POSSIBLE AND ASK THEM TO VOTE YES ON HR 1283, the Arthritis Act. Offices will be open from 8:30 am- 6:00 PM EST. We need all of you to please call the Capitol switchboard at (202-225-3121) or call your Member directly and ask him/her to VOTE YES tomorrow on the Arthritis bill, HR 1283.

This is truly exciting news and we will keep you informed as the day progresses.

This link will prompt you for your zip code so you can easily determine who your representative is. You’ll also receive contact info for your rep. I’ll be calling first thing in the morning! Who’s with me?! Let’s DO this!

For more information on the Arthritis Prevention, Control and Cure Act, click here.

This re-imagined can opener is touted as being gentle on the hands. Another neat feature is that it cuts the outside rim of a can, instead of the top. No sharp edges and no messy fishing expeditions for the lid.

At $20, it is a little pricey for a can opener, but if it saves me from more arthritis pain and hassle, I’m willing to plunk down a little more cash. Check it out! Anyone already own it? Leave your review in the comments.

Ratchet Safety LidLifter [via CNET Appliances & Kitchen Gadgets Blog]

Happy Thursday all! This is a fun, short video about chutzpah, the Canadian health care system, and a hip replacement. Enjoy.

Here’s the link in case the embedded player doesn’t work for you.

I am not one who has tried a lot of alternative food or supplement therapies to ease my rheumatoid arthritis pain or symptoms. I enjoy hearing about what works for some and what doesn’t work for others, but rarely do I feel motivated to investigate anything beyond that. I think this is partially due to the fact that it seems like an overwhelming task to determine which foods or supplements have a a positive impact on my disease. Plus, the prescription meds that I take do a pretty good job of keeping my disease in check.

Outside of my medication, I manage my disease by trying to stay active, eating healthy, and getting proper rest. I don’t always do any or all of those things well, but I feel like I can easily control those factors. Besides, those three things, plus taking my medication is enough for me to worry about.

From time to time I hear about foods/supplements or foods that “do an arthritic-body good.” Turmeric is one that often gets a lot of attention. The LA Times has an interesting article about how there really isn’t enough hard evidence at this time to make the claim that Turmeric is useful in helping fight various diseases.

For the most part, the tantalizing possibilities are still unproven, says Greg Cole, a UCLA professor-in-residence of neurology and associate director of the university’s Alzheimer Disease Center who has been studying curcumin for several years. “It does a whole lot of things in a test tube,” he says. “For people, the data are pretty weak.”

Cole agrees that there’s little downside to trying curcumin. Because the compound is so poorly absorbed, he sees little potential for harm. Studies have found that people can take 7 grams a day without side effects, although it’s possible that larger doses, or use over longer periods of time, can upset the stomach and perhaps increase the risk of bleeding.

Have you tried Turmeric or other supplements? Have you notice an improvement in your disease? Leave your thoughts in the comments.

Read the full article here.

Over at the Ouch! section of the BBC website, Andre Jordan creates weekly disabled-themed doodles. I find them kind of fun and wanted to share them with you. This one in particular is a good way to kick off Invisible Illness Awareness Week: 

Doodles by Andrew Jordan

Over the weekend, I stumbled across a great story about a young man named Joshua Sandoval who had been diagnosed with an invisible disease in grade school and while he was vigilant about managing his illness, he did not want to talk about it with anyone. Around the 10-year anniversary of his diagnosis, he decided to mark it by getting a tattoo that signified two important aspects of who he is: a writer and a diabetic.

As someone who suffers from Rheumatoid Arthritis, there are a few noteworthy items in his story that I absolutely related to.

Keeping the illness private for a period of time. Check. Having to get used to stabbing myself with a needle. Check. Feeling abnormal. Check.

Joshua’s tattoo is a really amazing way of expressing something that for many years, went unspoken. It’s bold, artistic, and will likely prompt questions from friends and curious onlookers. He is basically inviting strangers to ask him about his diabetes, which is a great way to raise awareness.

For now, this blog is sort of my version of Joshua’s symbolic tattoo. The blog gets me thinking and talking about my arthritis on a more frequent basis. And every time I sit down to write a post, I make progress towards acceptance.

Have you used creative methods to inform your friends and family of your chronic disease? Tells us about it in the comments.

Read Joshua Sandoval’s story here