Lupus Research Institute - Making strides!

Remember the webinar I did back in January, when I collaborated with The S.L.E. Lupus Foundation in NYC? They were also the Pillbag "Charity of the Month" for December 2012 and January 2013. As a coalition member of the Lupus Research Institute (LRI), they opted to send the donations, 5 % of every Pillbag sold during those winter months, to the LRI. I wanted you to see how your charitable contributions can really make a difference - so here's an update on the breakthroughs the scientists at LRI are making in lupus research:  

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“This Lupus Awareness Month, we spotlight our scientists’ success because it is their talent, creativity and insight that is turning patients’ hope into reality,” said Margaret Dowd, President and CEO.  “This is a time to recognize and celebrate the power of scientific innovation as the clear path to transforming the outcomes for lupus and autoimmune disease.”

Predicting flare. Two new lab tests to predict lupus flare. By detecting the earliest signs of an upsurge in disease activity the tests are designed to improve disease management and accelerate the testing of new drugs in clinical trials. Researchers: Mary K. Crow, MD and Emily Baechler Gillespie, PhD

Predicting heart risk. For the first time clinical research showed that a blood test for homocysteine identifies lupus patients most at risk for cardiovascular disease. Doctors now use the test to guide preventative treatment and reduce the chance of life-threatening cardiac events. Researcher:Joan Von Feldt, MD

Discovering how lupus attacks the brain. Researchers uncovered how the lupus immune system attacks the central nervous system (CNS), leading to current work on a new targeted treatment for neurological and psychological complications of lupus. Researcher: Betty Diamond, MD

Discovering how lupus harms the heart.  A chemically altered form of ‘good’ cholesterol was found to contribute to circulatory system damage in lupus. This discovery led to new ways to identify and treat patients at risk of heart disease. Researcher: Bevra Hahn, MD

Transforming kidney diagnosis. Researchers devised new non-invasive tests to diagnose and guide treatment of lupus kidney disease as alternatives to surgical kidney biopsies. Researchers: Chandra Mohan, MD, PhD;Chaim Putterman, MD; Joshua Thurman, MD

Discovering new genes. Genetic breakthroughs uncovered new culprits in lupus – the Toll-like receptors. Drugs that inhibit these proteins are soon to be tested in lupus patients. Researchers: Silvia Bolland, PhD and Ian R. Rifkin, MD, PhD

Smarter drug delivery. Using innovative nanotechnology to deliver drug doses directly to disease-causing cells promises to make existing lupus treatments safer and more effective. Researcher: Tarek Fahmy, PhD

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Three cheers for the dedicated men and women doing their best to find a better way to treat, manage and diagnose lupus. Here's hoping for even more headway in the coming year!

Making Lupus headway - The Lupus Initiative

On the heels of my post Wednesday, "celebrating" my dozen or so years of lupus by throwing a Pillbag Sale, and hoping for at least another decade of continued progress, improved treatment, and increased awareness and understanding of the disease, I'm happy to share news of a brand new initiative established to increase medical professional knowledge about lupus. Isn't THAT refreshing news?  

 

The Lupus Initiative^® (TLI) is a national education program designed to reduce health disparities experienced by patients with lupus.  The curriculum of TLI and other online resources are designed to empower medical professionals to recognize signs and symptoms of lupus and make appropriate referrals, as well provide culturally competent and patient-centered care.  The curriculum includes presentation slides, interactive case studies, traditional case studies and a video reference library to better prepare future doctors to identity cases of lupus, and to assist and support them in the diagnosis, treatment, and management of patients disproportionately affected by lupus based on race, ethnicity, and gender.  Here's a link to TLI website, and, specifically, their Patient Info page. (Text above courtesy of TLI website.)

 

TLI is led by the American College of Rheumatology in partnership with the U.S. Department of Health and Human Services’ Office on Women’s Health and Office of Minority Health and the U.S. Surgeon General.  The initiative is in response to advocacy efforts led by the Lupus Foundation of America and other groups. I've personally known dozens of lupus patients across the country and around the world who have taken part in such advocacy efforts. Our voices have been heard, and the world is taking notice. 

 

Lupites of the world - Welcome to the spotlight!

 

 

It's Lupus Awareness Month - let's celebrate with Pillbag savings!

May is Lupus Awareness Month, and it's time to celebrate! Now through Memorial Day, take 12% off your purchase at Sara Gorman's Pillbags. Just type in "LUPUSMONTH" in the discount code during checkout and save!

Why "12%"? To represent the 12 years since I've been diagnosed with systemic lupus. Here's to another dozen years of progress and productivity in the world of lupus...Pillbags, patents, new treatments, and all!

Enjoy the savings, celebrate the month, and start carrying your medication in style!

Pets reducing heart disease risk: Get Darwin a stethoscope!

I ran across a recent article stating the benefits of pet ownership as it relates to reducing heart disease, and thought I would share. Granted, the risk factors that lupus patients have in regard to heart disease may not be scientifically impacted by the companionship of a pet, but there are so many benefits to owning these guys. I mean, take little Darwin - doesn't he look like he just makes everything better? 

Enjoy the snippets of the article I've included below, and click here for the entire article. 

The American Heart Association (AHA) issued a scientific statement on Thursday saying owning a pet may help to decrease a person's risk of suffering from heart disease and is linked with lower levels of obesity, blood pressure and
cholesterol.

A study of more than 5,200 adults, cited by the AHA, showed dog owners were more physically active than non-owners because they walk their pets. Other research has revealed the calming effects of pets, which are used in animal-assisted therapy programs. 

Glenn H. Levine, the chairman of the committee that wrote the statement published online in the journal Circulation, added that the benefits are clear on cutting the risk factors for heart disease. But the studies are not definitive or prove that owning a pet directly causes a reduction in heart disease risk.

"What's less clear is whether the act of adopting or acquiring a pet could lead to a reduction in cardiovascular risk in those with pre-existing disease," he said, adding more research is needed.

Research has shown that the loyalty and love pets display can reduce stress, anxiety, depression and loneliness in their owners and increase their sense of well-being and self-esteem.

Door knobs and arthritis - the "twist" gets the boot.

The most recent task on our renovation to-do list led me to a hardware store specializing in door knobs and cabinetry hardware. While I wasn't particularly looking forward to the errand (not like meeting with a decorator to pick paint colors!), I wasn't overly concerned with the decisions before me. When it came to door hardware, I knew what I was looking for: I wanted knobs, in chrome, with a flat front, and a round base. Easy enough, right?

So when Bernadette and I walked into the store, I requested to see their version of this:

Option A

 I even knew what I didn't want:

Option B

I love the perfectly round shape of Option B, and months ago, it was my first choice. But when I sampled this knob at a friend's newly renovated home, I discovered it was difficult to fit my bony, arthritic fingers around that big bulbous knob and then turn (and that's without any joint pain to speak of.) So my original choice went by the wayside, and I moved on to option A. I'd kept the lupus factor at the forefront, like a good little lupite, and I thought I was set.

But when Bernie and I started sampling the knobs in the store, in comparison to the levers, I realized that even the easiest knob required more torque than any lever out there. So I thought. And I thought some more. And I realized given my circumstances, choosing a lever made the most sense.

So I considered this one:

Option C

 And then this one:

Option D

I ended up going with option D, because it has a thicker handle to grasp onto, and its perfectly smooth surface felt nice against my knuckles. (Mine protrude quite a bit, ready to swell at a moment's notice. Do yours?) Johnny approved of "D" via a text photo, and Bernadette and I moved on to cabinetry hardware.

Same rules applied there, and since I was now cognizant of the need for a thicker handle (I'd actually forgotten about my "skinny writing pen" rant from a few years ago), I made sure that the handles for the cabinets had a smooth surface on the inside, a thickish girth for an easy grasp, and a nice line to match the look of the kitchen. The kitchen knobs had particular requirements, too - they couldn't be too small or too flat, because that makes it hard to fit my fingers around. I just want to be able to grab and go.

The kitchen cabinetry has only been "loosely selected", so you'll have to stay tuned for pictures to come. And the cabinets themselves are still scheduled to be installed the week after next. How exciting!

As a side note, in addition to the revelation I had on the knobs, spending time at my friend's fabulous new home also clued me into the fact that a large, single door on a refrigerator is too heavy and too hard for me to open. Too much suction or too little muscle - whatever the reason, I went with a nice French Door model refrigerator that opens and closes with ease. Thanks to GG for letting me sample hers for the last few years!)

Quick-acting Allegra: I wish LUPUS drugs worked so quickly! (And a Pillfold review, too!)

Suddenly, one day last month, I woke up with seasonal allergies. I guess that's how it happens, right - you're fine one day, and the next, you're a mess? I woke up and my eyes were itchy and watery, I had nasal congestion, my throat was scratchy, and I was hoarse. And throughout the day, the symptoms grew worse. And they continued the next day, and the day after that. I've seen enough allergy commercials (and felt a tinge of these symptoms before) to know that they were unmistakably indicative of seasonal allergies. I could have been pollen's poster child!

I turned to the seasonal allergy king in our family, my husband, and he offered me an Allegra. I chose to consult my pharmacist first, and she confirmed that Allegra was a good choice, and would be fine in conjunction with my other medication. (The only "allergy" medication I've taken in the past was  Zyrtec, but that was for angioedema, or random swelling.) I took one Allegra at bedtime as the pharmacist suggested, and the next morning I woke up clear-headed and 100% cured. I couldn't believe it! I've continued to take my Allegra as directed, and my allergy symptoms have remained at bay since that very day - and it's been almost a month. I'm thrilled, and with no obvious side-effects at all.

The only lupus medication that seems to work as quickly is our beloved Prednisone, but we all know the side-effects that come along with those little pills. Steroids can be so troublesome, but they do deliver a fast result, albeit a short-lived one. You can read about all of my past prednisone posts here. There are plenty of them!

I ran across a great post about Medrol (which is also a corticosteroid like prednisone) on another blog recently, and thought I'd share. Here's a link to Dauntless Dames' take on those little white pills.

I found this site because the blogger featured a review of a Pillfold a few posts before her prednisone piece. Check out why she loves her new Pillfold here...those are her words, not mine! I'm so glad she's happy, and I appreciate her post!

A lupus personality test: diced butter and a cell phone

I’ve written before about the rich, buttery butterscotch scones that have become one of my favorite recipes to make. They’re relatively easy, turn out great each time, and freeze well. AND there are butterscotch chips involved. What’s not to like?

The only hitch is that they require that a stick of diced, chilled butter be worked into the dough. That’s always been tricky with my arthritic-prone hands, and until lately, I used to attempt the three-minute endeavor in one straight shot, rendering my fingers and hands useless because of the pain inflicted. But over time. I’ve realized that taking a break every 30 or 45 seconds isn’t a bad thing. If I break up the task, my hands hurt very little, if at all. Imagine that - taking something slow and steady has its benefits. Who would have thought?

I recently related this story to a chef-friend of mine, and she gave me an even greater tip to help with the chilled-butter process. She says that if you grate the chilled butter with a cheese grater, it will be that much easier to work into the dough than the larger diced pieces. Brilliant, huh? So glad she passed on the advice, and I will definitely try it the next time I make my scones. Between that and my self-imposed time outs, I’ll be set!

My compulsion to move at lightening-speed has been put to the test many times since I was diagnosed with lupus. Beyond my hobby of baking, I’ve had to temper my personality in all aspects of my life, in order to keep lupus symptoms at bay. My instinct is to pack in as much as I can in the least amount of time possible. But that M.O. can induce stress, limit sleep, and ignite disease activity. So over time, I’ve learned to dial back that efficiency mode, but it is a constant challenge.

Most recently, my cell phone has served as a temptation for “immediacy”, just as it does for most people. If the phone rings, dings, vibrates, or lights up, the need to check it is overwhelming, right? But I have to remind myself that during my sacred naptime, from 2-4pm, my phone (and the desire to tend to my affairs as quickly as possible) has to be put on hold. I try to make a habit of keeping my phone in another room during nap time, so that I can’t even hear it vibrate or see it light up. But lately, my phone has found its way onto my bedside table during nap time – for whatever reason – and it takes more willpower than I can muster to resist checking my phone when I hear that vibration sound. I can turn the phone off, of course, but it’s been an interesting experiment in self-control to resist the urge to check it. I'm improving, in fact...and a short visit back to Indiana where I spent a couple of days with my technophobe, almost 74-year-old father was enough to remind me that the phone and its messages really can wait. What a treat to look someone in the eye and actually converse. I wouldn't have had it any other way.

So here's hoping I can continue to use a little self-control where my phone is involved. I can't promise, however, that the same rule applies when it comes to helping myself to a second scone. Here's a link to the scone recipe. Grab your grater and start baking!