Friday, March 6, 2015

War on household items: putting my lupus joints at ease.

Why is this bottle of jelly my new nemesis?


Because it's so hard to use! This squeezable bottle of jelly and I had it out earlier this week, when it took every ounce of strength I had to squeeze out enough jelly for one sandwich. It seems the suction causes unbelievable resistance, which prevents the jelly from coming directly out when the bottle is squeezed. I could barely muster up the strength in both hands to force the jelly to make its way out of the bottle and onto the bread. And my joints weren't even aching this week!

This doesn't mean I'm going to give up on Welch's. Our family is evenly divided between Welch's grape, and Bonne Mama's Strawberry Preserves. But I will not make the mistake of buying Welch's squeezable bottle again. It's only jars and knives for this arthritis-friendly family from now on.

But just so that we don't dwell on the negative here, let me point out the multitude of arthritis-friendly packaging that is available today. I find that shopping around for the easiest-to-maneuver packaging makes a big difference. Generally speaking, I think squeezable options tend to make things easier, but as mentioned, the above seems to be an exception.

Here are some of my favorites:

I think this

is easier to use than this

And both of the above are still better than using this:

I also think these

are a lot easier to handle than using something like this

primarily because the plastic ziploc containers are so much lighter. Glass is always heavier, and where my joints are concerned, heavier is never better.

I also like this

over this
Image result for bar of soap

because it can be hard for me to wrap my arthritic hands around a bar of soap.

It's not just time and energy that's saved when it comes to choosing easy-to-use household items. When my joints don't mesh well with packaging, I'm held back from daily tasks. And that makes me feel weak, dependent, and not very self-sufficient. And who doesn't want to feel self-sufficient when they're brushing your teeth!

Now - for one last example, because I've always thought these were so difficult to use:

and because I think these are easier to use

Image result for round zipper pulls

than these,
Image result for ykk zipper pulls

I created these:

(You knew that was coming!)

Any packaging of household items that make your daily tasks easier? Feel free to comment or email, and have a great weekend!

Wednesday, March 4, 2015

Empowering words to get me through Lent. Easter Sunday, here I come!

Wednesday, February 18th marked the the beginning of Lent, which is the forty day period before Easter. During the Lenten season, it's customary to make some small sacrifice in order to prepare youself for Easter. Typically, people choose to give something up, like a bad habit, or they take on a good habit, like volunteering.

I am no stranger to the Lenten resolution. Over the past 35 years or so, I've given up everything from M&M's or ice cream, to not being scared of the dark. I've taken on charity projects, worked on my temper, or added a weekday mass to my schedule. But there's one Lenten resolution that I tend to recycle the most, and that's my time management skills. Season after season, I often pick something new to work on, and then I add, as an afterthought, "...and let me work on not being late."

It's not that I'm the latest person that every lived. It's just that I'm almost always late when I do just about anything. And a few minutes of lateness every single day can be draining...on myself, but mostly on other people.

So this year, I'm trying something new. I'm going to make my time management resolution a priority, not an add-on. And I'm not going to "give up being late." I'm going to work on being ten minutes early.

Pure semantics, but I'm hoping it will work. I figure it's better to focus on the positive side of the equation, rather than the negative one. Working toward something has to be more motivating than trying to fight against something else, right? My theory is that striving for a behavior will be more empowering than striking one.

Empowerment can be a very powerful tool when it comes to working with others, and even in dealing with lupus. Take my afternoon nap, for instance.

As many of you know, I have no problem talking about my daily afternoon nap. Most of my friends and family know I take one, and that I choose to plan my daily activities around it. So if I'm with anyone else who knows me between the hours of 1-5 pm, my nap is up for discussion. And I'm fine with that. In fact, I appreciate it.

But my favorite way of talking about it is by being asked. I love when someone says, "So Sara, what time are you going to take your nap today?" or "What's your plan for fitting in your nap?"

Simple. Succinct. Empowering.  I own my nap, I should decide when to take it. It's so much better to be asked than to be told. When someone says to me, "Sara, you should take your nap at X time" or "You need to get to bed", it makes me cringe. I feel insulted, and in no way empowered. It's as though I'm being accused of not taking ownership of my nap, and that can feel demeaning.

**Note: The above rule (of preferring to be asked and not told) is ONLY applicable if I'm being the responsible, mature lupite that I strive to be, and if I'm visibly choosing an appropriate nap time and length. If I'm misbehaving, and ignoring my nap time, then by all means, I may need to be reminded, hassled, or personally escorted to bed. And I have to warn you, if you're still in the phase of stubbornness, obstinence, or flat out denial, then the latter method most likely applies to you, too!

The rule of empowerment is true in practically any conversation I have, in fact. During the year we renovated our house, my husband and I were in constant phone contact with our contractor. We traded off on making the daily calls, and I remember how much more effective it was when I'd ask Johnny, "Did the contractor ever get back to you?" instead of "Did you remember to call the contractor?

There's that accusatory tone again in the latter, which probably made Johnny cringe, too. I'd rather empower him by letting him own the call, rather than accusing him of not making it.

Choose your words wisely, and you can empower someone to do just about anything. Hopefully, you've been empowered to empower someone else today!

Wednesday, February 25, 2015

Despite Lupus Radio Interview on Conversations in Care

Thanks goes out to Tami Neumann at Conversations in Care for a great interview this morning! I thoroughly enjoyed being on the show - and look forward to the next opportunity to chat. Great questions, great host. Would love to do it again!

You can listen to the interview below, or follow this link. We touched on some great issues - asking for help, managing the doctor/patient relationship, and dealing with the loss of control after a chronic illness diagnosis. It's all in there - a packed 30-minute interview!

Check Out Health Podcasts at Blog Talk Radio with Conversations In Care on BlogTalkRadio

Monday, February 23, 2015

Despite Lupus hits the airwaves again...with Conversations in Care this Wednesday!

Be sure to tune in this Wednesday, February 25th, at 10am as Despite Lupus joins host Tami Newmann on her award-nominated radio show, Conversations in Care

I'm looking forward to talking with Tami, and covering all things lupus, chronic illness, and beyond. She broadcasts from CST time zone, so note that the show runs at 9am CST/10am EST.

Here's all the information you should need. Feel free to call in and ask your questions. We'd love to hear from you! 

WHEN IS THE SHOW?: The show airs live at 10 AM EST on Wednesday, February 25th. 
HOW CAN I TUNE IN?: You can listen online by clicking here
HOW CAN I ASK MY QUESTIONS?: Simply call into (646) 478-4343 and ask away!

Thanks so much for joining me on the airwaves. Talk to you then! 

Friday, February 20, 2015

Shortage of my favorite Hydroxychloroquine, brand name of Plaquenil?

I recently heard about a possible Hydroxychloroquine (Plaquenil) drug shortage, and thought I'd post.

First and foremost, please don't panic. I know that Hydroxycholoroquine is typically a lupus staple, and many of us (and our doctors) don't know what we'd do without the drug. I just wanted to poll the readership to see if any of you have been affected, and whether some areas of the country are having more difficulty than others. I just refilled my 3-month prescription in January, with no trouble. Hopefully, the issue will resolve itself soon!

Feel free to email or comment if you've experienced trouble filling your prescription, and if so, tell us what you and your doctor or pharmacist have done in the meantime. (We're solution-oriented here at Despite Lupus!)

Here's a link to the Lupus Foundation of America's article on the drug shortage, and here's a snippet of the story:


We have heard reports throughout the country that individuals have been unable to obtain hydroxychloroquine, the generic form of the drug. According to the FDA, a generic drug is identical, or bioequivalent, to a brand name drug in dosage form, safety, strength, quality, performance characteristics and intended use.

There are also reports that the price of both the generic and brand name forms have increased dramatically. Several manufacturers of hydroxychloroquine have told us that the cause of the shortage is due to an increase in demand...The FDA has not formally added hydroxychloroquine to its list of drug shortages, but the FDA works closely with the American Society of Health-System Pharmacists (ASHP) and directs individuals to ASHP to receive the most up-to-date information on drug shortages.


Monday, February 16, 2015

Diabetes drug, Metformin, shows promise as treatment for lupus! Could it be?

I came across this article about a possible new drug to treat lupus. Looks and sounds pretty promising. Read the full article here, and read an excerpt below:


Diabetes drug shows promise treating lupus - U.S. researchers

ORLANDO, Fla. Wed Feb 11, 2015 2:00pm EST\

 A common diabetes drug could be part of a two-pronged treatment to reverse the effects of lupus, a chronic autoimmune disease harmful to body tissue that often causes pain and extreme fatigue, researchers reported on Wednesday....In lupus, a person's antibodies, which normally fight against bacteria and viruses, instead attack healthy tissue.

The white blood cells secreting the antibodies feed mostly on blood sugars called glucose, said lead researcher Laurence Morel, a pathology and immunology specialist at the University of Florida medical school.
Her tests found that treatment with the first-line type 2 diabetes drug metformin - in combination with a glucose inhibitor - slowed the metabolism of the white blood cells. They returned them to normal functioning, Morel said.
The testing used white blood cells from patients with lupus, as well as mice, Morel said.

Morel said she got the idea from research in which cancer was treated successfully by limiting the metabolism of cancer cells. From the many existing drugs inhibiting metabolism, Morel said she picked two that had good results in mouth cancer.
Read the rest of the article here, but my fingers are crossed. Wouldn't this be a great way to start the year?!