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?!

Friday, February 13, 2015

Exercising my good lupus decision making skills - by skipping the exercise, et al!

I never regret a good, healthy decision. So when I made three of them in a row earlier this week, I couldn't help but feel proud.

When I woke up on Wednesday morning, I was tired. Like, really tired. I'd been up the night before with Deirdre who had a coughing fit around midnight, and I had trouble falling asleep to begin with. Doing the math, I simply hadn't logged enough hours of shut eye. Thankfully, the girls were both off to school that day, so I knew I had some peace and quiet coming.

But because they were going to school, I'd scheduled every moment of my free morning: I had product shots to edit, blogs to write, calls to make, and prep to do for Bernadette's 1pm ENT appointment. In addition, I wanted to work out, shower, and make lunches for Bernie and myself for the road - all before 11:50am, when I leave to pick up Bernie from school. I knew I was pushing it with all of my tasks, but if I got right to work, at least I'd get through the majority of my list.

But when I got home around 9:15 from dropping Bernie off at school, I still couldn't shake my fatigue. I thought long and hard about my options:

First on my to do list was editing the product shots.
I needed to clean up the background of a few pillbag photos so I could post on Amazon.
But I was really tired.
And when I'm really tired, projects on the computer (like photo editing) take a lot longer than they are supposed to.
Should I waste an hour of time editing under fatigued conditions, only to end up frustrated, unfinished, and still tired?
Or should I put off the editing to take a quick nap? I'd be refreshed, and the editing would take half the time it would otherwise. I'd still have time for a run, and a quick shower.

Good decision #1: Take quick nap.

I switched on the fire place, set my phone alarm for 10am, curled up on the couch with Darwin and snoozed.

Sleep, sleep, sleep.

Alarm goes off at 10 am.

I turn off the alarm, but I'm still tired.

I think, again, about my options.

I still don't feel up to doing the editing, but I could knock out a blog post. That would require getting up off the couch, going upstairs to get my computer, and getting in compose mode.
But when I'm tired, compose mode doesn't come very easily. In fact, when I'm tired, blog posts take...drumroll, please...a lot longer to write then normal.
Maybe I should just skip the post, and lie here a little longer.

What could I do from this couch?

Ahhhh! I have to prep for Bernadette's ENT appointment today!

That would require very little critical thinking or exertion on my part, and I could do it right from the couch.

Good decision #2: Continue relaxing by the fire while prepping for doctor.

I grabbed my phone, set my alarm for 11am (so I could move on to my workout and shower), and did what I had to do: mapped out questions, listened to 20 minutes of Bernie's sleep recordings so I could share bits with the doctor (which I could do with my eyes closed), and sorted out where my notes and videos resided on my phone so I could pull them up at a moment's notice during the appointment. (Yes...for those of you wondering at home...THIS is what I mean by prepping for a doctor's appointment in my book, Despite Lupus. You have to go in prepared. You have to go in with ammo. You have to go in ready to contribute in an efficient and timely manner.)

Relax, Listen. Relax, Listen.

Alarm goes off at 11am.

Hmmm. Still kind of in relax mode. Actually feel like I could almost fall asleep.

I consider my options:

I could hustle up stairs, change into my work out gear, and run on the treadmill.
I could make a mad dash for the shower, get ready in a flurry, leaving my hair wet and throwing on an outfit.
I could slap the lunches together, and be out the door by 11:50am. I'd be a frantic mess, but at least I would have exercised.
But I would still be tired. In fact, I'd be even MORE tired, because it would be an hour later. And I would have to drive 45 minutes with Bernie to the appointment. And then be "on" during the appointment. And then drive home 45 minutes.
And when I'm tired, the LAST thing I want to be doing is driving.
So do I actually skip my run, and sleep a little more? Do I actually choose safety and fall back asleep?

Good Decision #3: Yes! Skip the run. Sleep some more. Ensure your own safety, and the safety of those around you! I set my alarm one last time for 11:25am. I fall right alseep, and have an even better rest than I did earlier.

Sleep, sleep, sleep.

Alarm goes off 11:25am.

I wake up rested. I feel great. I'm ready to rock.

I hop upstairs, shower, dry my hair, and dress, all at a normal pace. I make lunches, I get out the door right on time, pick up Bernie, and off we go to the doctor's appointment. I don't have an ounce of fatigue during the entire appointment, which actually goes an hour longer than I thought it would.

As I'm driving home at 3 o'clock (which I thought would have been 2 o'clock when I scheduled the appt.), I think about how essential my decision making was that morning. Had I not made those good decisions, I would have been a crumpled, exhausted mess by that point. As it was, I was rested, and feeling great. The drive home went smoothly, and I got a mini - nap eventually, once we arrived home.

Almost all to-do's remained on my list that day, and yet it was successful by my standards. My, how far this Type-A lupus lady has come!