Monday, October 31, 2011

My NEW least favorite things

As many of my loyal readers may remember, I absolutely, positively despise poison ivy. Not that anyone actually likes poison ivy - but the old P.I. and I have a hate-hate relationship. It wreaks havoc on my skin, and, perhaps because I'm prone to all things systemic, once P.I. hits my system - my whole body is compromised. It takes weeks if not months to clear up - and only with the help of lotions and creams, prescriptions and special baths, ointments and scrubs. The time and energy I spend prepping, treating, and caring for my poison ivy-ridden skin is unbelievable...and for every ounce of energy and moment of time I spend, it makes me hate P.I. even more.

So it's hard to believe that P.I. actually has some competition now. Alas, there are two new things I've recently discovered that are quickly by-passing P.I. on my list of leasts, tied in the lead  for the top spot. One is malware. The other is eczema.

Alright - so let's talk malware first. I cannot believe how much time and energy had to be spent to clean up my website. It was unbelievable! People shutting down "backdoors", extricating "redirects", and deleting lines of "stray code" just scratched the surface. I have email after email, and help desk response after help desk response, detailing the issues that kept cropping up. It wasn't until I hired a malware-deletion service, www.sucuri.net that the problem was (fingers crossed) solved. But that wasn't without weeks of wasted time and energy beforehand. I definitely compare it to P.I. - it would crop up anywhere, wouldn't go away no matter how hard we tried, and left a trail of pain and suffering in its path. Yup - that pretty much sums up P.I. And it sure sums up malware, too.

And now, to finish off the triptych of menaces, I can add Eczema to the list. Miss Bernadette seems to have a crummy case of it right about now. You want to talk lotions and creams, potions and antidotes? Baby B has been lathered up from head to toe at least 700 times by now - and not with a little dab of baby lotion here, and a little dab there. This is heavy duty, Aquaphor, full-body coverage, with a little hydrocortisone thrown in now and again to really get the job done. I'm so proud of my little lady though - her little skin condition hasn't changed her sunny disposition one ounce. And the fact that we spend 10 minutes in the morning, 10 minutes before nap, and 10 minutes after her bath, slathering her with lotion doesn't seem to faze her at all. She just smiles, and reads her book, and tries to stick her hand in the tub of Aquaphor. I think she kind of likes the Mommy-Daughter time...and truth is, I guess I kind of do to.

But the eczema, I could do without.

Bernadette reminds me, however, that all that time and energy pays off, because every morning when she wakes up, there's not a sign of eczema on her precious little baby skin. She's allowed that lotion to work all night, and she wakes up soft, silky, and smooth, without a red patch anywhere. It's those kinds of results that remind me that diligence in your pursuits and dedication to a routine really do work. Living well, despite lupus requires just that kind of diligence, and that exact sort of dedication. I'll just have to keep my eyes peeled for the benefits.

Oh - there's one now. :)

Thursday, October 27, 2011

The cloud has been lifted...

I'm officially declaring the month of October "Malware Month" on Despite Lupus.com. Seriously - that was the worst case of website infection ever!!!

My apologies for the disruption on my site - I had to abandon blogging for the last week or so due to the difficulties, and as you can see, I've stripped down my site, all in an effort to get rid of that nasty malware.

Fingers crossed - I'm in the clear now, thanks to the handy services of Sucuri.net. The team at Sucuri, along with the tireless efforts of my web guys, have left me with a site free of malware. Thanks to all of the emails and get-well cards - I really appreciated the tip-offs!

So - look for updates and new posts to come next week. I'll fill you in on what's been going on in the world of Despite Lupus. There's a new site in the works, with a fresh new look and a whole new line of products I've designed for people who are living well, despite their chronic illness. Stay tuned!!

Friday, October 14, 2011

ALR's SLEGEN Project - Don't particularly like the name, but love what they do!

Alliance for Lupus Research (ALR) has been doing wonderful things over the past few years, and this SLEGEN project, short for Systemic Lupus Erythematosus Genentics Consortium, is one of them.

This project, founded in 2005, conducted a three year study that has uncovered specific genes linked to lupus. The study was supported and funded by ALR - a $2.25 billion endeavor.

Researchers studied DNA from more than 6,700 women, including lupus patients, their families and unrelated controls.


After scanning the entire genome and 317,000 single nucleotide polymorphisms (SNPs), scientists found:

◦A total of four genes with robust evidence of genetic linkage to lupus - gene ITGAM, KIAA1542 and PXK - and at SNP rs10798269, a DNA unit not found within any known gene.

◦Nine other genes with promising evidence of linkage to the disease

Cool, huh? But maybe you're asking, so what happens next?

Thankfully, ALR answers that:

"Now that these genes have been identified, other scientists can seize upon these findings to start developing new strategies for prevention and therapy. These results represent a significant step toward the ALR mission of preventing, treating and curing lupus. Moving forward, SLEGEN updates will show how this study is driving further advancement in lupus treatment. The SLEGEN project opens the door to future lupus research funding that will help build on these groundbreaking results."

Super cool, right?

Copies of Despite Lupus have served as auction items at various ALR events over the years. If the results keep flowing, the copies will keep coming!

For the entire article, click here.

Tuesday, October 11, 2011

Malware alert - sorry for the distraction!

My apologies if you've been experiencing the nasty malware alert on my site. My webguys are on it - they've run scan after scan, without finding anything on my actual site, but there does seem to be an issue on Blogger's end. Thus, Google is black balling the blogspot. (Hint - if you go to www.despitelupus.com, you might be okay. It's www.despitelupus.blogspot.com that seems to be causing the trouble!)

That said, I'll continue posting, because from the comments and emails I've been getting, many of you are still reading. (I can post and view my site without a problem, interestingly enough.) Hopefully, the malware alert will be lifted soon - we've asked Google to run another site check, and my fingers are crossed that they'll find what my webguys are finding. Nothing!!

Thanks for sticking with me. DL will return to its former glory soon!

Monday, October 10, 2011

Whew! We made it through the week of birthdays! Bernadette turned 1 on Thursday, and Deirdre turned 3 on Saturday - both girls enjoying their special days of cake, ice cream and celebration. Deirdre celebrated at school on Thursday, too - we took in cupcakes for the class, she got to wear a crown - she was in heaven.

She was milking her royalty status all week, in fact. We were talking to a friend of mine on Wednesday around noon, and she asked what kind of cupcakes Deirdre was going to take to school the next day. Deirdre responded, "I'm taking strawberry." And I said, "Well, now - that's news to the baker." I explained to Deirdre that we would be taking cookie cups this time, and she looked at me, looked back at my friend, and said, "We're taking strawberry."

Hmmm. Funny how the apple doesn't fall from the godfather tree.

I figured I'd let the whole subject alone - we'd take naps, I'd make the cookie cups, and that would be the end of it.

But where did I find myself later that evening? At the store, buying strawberry cake mix for Miss Priss' strawberry cupcakes. I just couldn't let my little lady down. I mean - it was her very first birthday party at school. And if she wanted strawberry...well then...she'd have strawberry.

Which drives home the point that I always try to make when people ask me about kids and lupus. I always say that you have to put yourself first - that you have to make a point of keeping yourself happy and healthy - all in an effort to keep your kids happy and healthy. And I can say this so definitively because as parents, and particularly as mothers, we're going to do everything we can to make sure our little ones are taken care of. We're going to bend over backwards time and time again, to make sure they've had enough to eat, ensure they get enough sleep, confirm that their greatest and smallest needs are being met. We just can't help ourselves. We're going to minimize their suffering, and in fact, eliminate it whenever possible. Instinctively, we're going to try and keep them as content as possible at all times - without even thinking about it. So what we do have to think about - is the idea of putting ourselves first. We actually have to make an effort to do so - an effort that is vital to our health and well-being. And truthfully, to the health and wellness of our children, too.

The healthier we are, the better care we can give to our little ones. The more rested I am, the better equipped I am to handle my gals. The less stressed and more relaxed I am, the easier it is for me to enjoy every moment with those munchkins.

So just think:

How many times have you said to someone, "My little one does so much better with an hour of down time or quiet time during the day." Yeah- well guess what? So do we.

And how many times have you turned the world upside down to make sure you little one gets in a nap? 
You shush the dog, catch the mailman in the driveway, put off running the laundry, the dishwasher, or taking a shower - just so the house stays as quiet as possible because you know how important that nap is to your child. Well, guess what? Your nap is just as important, too.

Maybe you take one before the kids come home from school, or maybe you ask your husband to take over for 30 minutes after work, or maybe you enlist your neighbor's daughter to play with the kids while you rest. However you make it happen - make it happen. You know you'd do the same for your kids.

Deirdre was getting those strawberry cupcakes one way or another. There was no way I was going to let her down. I just have to remember that I can't let myself down either. It's not fair to me, and not fair to her either. I owe it to her and her sister to be healthy. And from the assertive way Deirdre carries herself, I don't think she'll let me off the hook for anything less!

Wednesday, October 5, 2011

The Us in Lupus - love the new site!

It's hard to get too excited by anything you read in the doctor's office, but just yesterday, I found myself genuinely wowed over a pamphlet that is being distributed by Human Genome Sciences and Glaxo Smith Kline, the makers of Benlysta. They've launched a brand new lupus site and campaign, called the US in Lupus. It's a great site - and the information they provided in the brochure about collaborating with your doctor to ensure effective treatment was right up my alley. I won't say it was like reading a page right out of my book...but it was awfully close!

I'm so impressed with the professional look and feel of the whole thing - check it out here! You can join the community, as I did - but I haven't been a member long enough to tell you what's in store. I'll report back once the emails/tips/conversations/benefits start flowing!

Monday, October 3, 2011

STOP in the name of Bernie: lupus lessons learned along the way

Bernadette, Deirdre and I went to the store the other day. It's about 4 miles away, but it took us about 20 minutes to get there. No, there wasn't any traffic, and no, we didn't have any car trouble. What we DID have was a 1-year old who is prone to motion sickness.


That's right - little baby Bernadette is a cookie-tosser. She's lost her lunch (or whatever meal she's just eaten) on almost every other trip we've taken...and when I say trip, I mean anything over 15 minutes. Her dad, the motion sickness king, tells me that turning her baby seat around in the car will help, and that while he doesn't remember getting sick at quite that young of an age, he has heard stories, and he was pretty much the same way. (Grandma Gorman - feel free to weigh in on this one. Suggestions are welcome!!)

Truth is, Deirdre's been prone to motion sickness, too, but never on such short trips. Her moments have come on winding, hilly roads - understandable to say the least. And of course, little Bernie's episodes are understandable, too - now that I know what's going on.

So I've been rethinking our routes, attempting to find the straightest path to the grocery store, the fewest number of stops to church, and the least jarring way to the dry cleaner. But no matter what the path, I go it slow. Like, really slow.

Which brings me to my lupus tie-ins: one, don't judge a book by its cover, or rather, a car by its speed, two, embrace the art of punctuality, and three, learn to slow down and relax.

One is obvious - since I've had lupus, I've become a much less judgemental person. Whether it's having experienced the rashes and bruises, the debilitating arthritis, or the significant hair loss, I've learned that you really never know what someone might be up against in their personal life. I'm sure, at various times in my lupus career, people have really wondered about my appearance. And I'm sure they've made judgements about why, when, and how. But thankfully, I no longer do that to others. And now, I'm going to have the chance to apply that methodology to those slow, Sunday drivers that used to drive me absolutely bonkers. From now on, they will no longer be getting the honk, honk, beep, beep from me. No - starting today, I'm going to be the one getting the honks. Maybe I'll have a "Motion Sick Baby on Board" sign made...or maybe not. Maybe I'll just start by blogging about it, so then maybe you'll think twice the next time the gal in front of you eases into a stop sign, and even more slowly eases back on to the gas. If it takes an extra 20 minutes, little Bernie, I've got twenty minutes. For you, anything.

Which brings me to #2 - which is the art of punctuality. If you recall, I'm a self-declared late person. I'm late for everything. I try not to be, but I just end up 15 minutes late to just about every event I go to. For some reason, doctor's appointments and Deirdre's school are above reproach (thankfully), but if it's church, a dinner date, or coffee with a friend, I just can't manage to get there on time. I'm getting better - but I'm far from punctual.

However, the fact that it now takes me an EXTRA 15 minutes to get anywhere has encouraged me to rethink my timing. And if, in fact, I have to build an extra 1/4 of an hour or more into my scheduling procedure, perhaps I'll just learn to factor in a full 1/2 an hour. Maybe, this is a blessing in disguise. Maybe I will become the most punctual person ever.

Okay, so maybe not. That was my optimism talking. But I do think improvement in the late department is possible. I might even say likely.

Now my third point is just proof that life really does come full circle. For years since I was diagnosed, I’ve been touting the importance of slowing down, relaxing, and taking your own sweet time. You have to when you have a chronic illness that inflicts pain and fatigue – being rushed, stressed, or on deadline really aren’t ideal for many lupites. So this slow down thing really isn’t a huge shock to me. It’s a bit unnatural, of course, but it’s an opportunity, right? After all, slow is slow, and sick is sick. If slow prevents sick, then I'm all for it. If rushing from one errand to another doesn't work for my baby girl, then rushing will no longer be. I've officially adopted the slow and steady method of driving - no quick movements - no herky jerky turns. Just relax and enjoy the ride.

with a bib on, Bernie, if you don't mind.