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!

Monday, February 9, 2015

Finding your happy place - despite those lupus lumps.

Whether it's an abnormally hectic schedule, too much disease activity, or cranky kids, there are some moments in life when I find myself ready to explode. I don't have a terrible temper, but I'm not as level headed as I could be when I'm under pressure, or when little munchkins are purposefully agitating me. As of late, though, I've been able to reduce my fury to a mild simmer, simply by taking a moment to talk myself through my exasperation.

My self-talk usually involves reciting a familiar prayer or saying, something that shifts my focus from my charged emotions to the concrete task of saying the words. Here's my usual go-to:

Lord, make me an instrument of your peace. Where there is hatred, let me sow love; where there is injury,pardon where there is doubt, faith where there is despair, hope where there is darkness, light and where there is sadness, joy. O Divine Master, grant that I may not so much seek to be consoled as to console to be understood as to understand to be loved as to love. For it is in giving that we receive it is in pardoning that we are pardoned; and it is in dying that we are born to eternal life.

Depending on how stressful the situation, how symptomatic I am, or what the sass level is in the house, I say this prayer several times a day, sometimes multiple repetitions at a time. In fact, I just keep repeating the prayer until my anger all but dissipates. Sometimes, it takes a lot of repetition (like, a lot), but almost always, I'm able to find my center and deal with the issue with a new found sense of peace.

And in moments that are particularly trying, I don't even get past the first line. I just focus on the words that are so beautifully captured in the first line,

"Lord, make me an instrument of your peace."

That just says so much to me - as a mom, as a lupus patient, as a business owner. In reciting this one line, it enables me to detach from my anger, resentment, or frustration. It puts me in a mode of proactively seeking to improve the situation, while simultaneously asking to share the burden. It's quite empowering.  And after repeating this phrase 20 times in a row, it's pretty hard to fly off the handle!

There have been a few select times (with more to come, I'm sure) where I stop myself at the very first word. Life really does throw some serious lemons, and sometimes, there are so few words that can bring comfort. In moments like those, I may start out by saying the whole prayer, but after a few repetitions of even the first line, all I can muster is that very first word. But oh, what a word!

While this prayer may not be your kind of thing, I encourage you to find the right combination of words or phrases that allows you to step back and reassess. I think we all need to reset every once in awhile. The bestselling book and one of my favorites, Eat, Pray, Love by Elizabeth Gilbert touches on the idea of a mantra, and you can click here to read an excerpt from the book on this subject.

For me,  I'm sticking with my prayer. It's working, and it seems to be making an impact. In fact, just this past week, my kindergartner came home and said, "Guess what our new prayer of the month is? It's that one that you always say with your eyes closed."

Yes, my eyes are usually closed, my sweet little pumpkin, as I'm trying my best not to see red because you've just sassed me to death!

Of course, I don't say it quite like that, but if I'm able to help Deirdre and Bernadette find their happy places sooner than I found mine, all the better. I realize in moments like these the responsibility I have as a mother to lead by example. Despite the fact that sometimes, I'd rather throw a tantrum myself!