Tuesday, December 24, 2013

Merry Christmas and Happy New Year!

From Despite Lupus Headquarters and Sara Gorman's Pillbags, we wish you all a very Merry Christmas and a very Happy New Year.



We'll see you in 2014 - take care and best wishes until then!


Friday, December 20, 2013

Informed, but filtered: Using the internet to HELP your lupus, not hurt it!

A few months back, my girlfriend went into a doctor's appointment. The doctor asked her how things were going, she said not so well, and the doctor asked what had been happening. My girlfriend replied, "For starters, I googled too far."

We've all been there - you begin by innocently searching on the web for an answer to a health question. Maybe it's about lupus hair loss, or pregnancy with a chronic illness, or how long steroid withdrawal is supposed to last, but before you know it, you've found yourself reading about terrible health catastrophes that are of no interest (and may not even be relevant) to you. But now you've taken in the information, and you're left to process it. Ugh!

I've found the internet to be a very tricky tool when it comes to managing and learning about lupus. I find the most success when I limit myself: I do a quick search on the subject in question, I read just a few snippets from websites that I know and love (www.mayoclinic.com, www.lupus.org, www.WebMD.com), and that's it. If I've found the answer to my question, I stop reading. If I'm satisfied with the information I've found, even if it doesn't directly answer my question, I stop reading. (I can always follow up with my doctor to clarify.) In fact, even if I DO find the answer to my question, I still follow up with my doctor. The information online, while accurate in general terms, may not apply to my particular case of lupus, and it may not be the right fit for my situation. So I always let my doctor weigh in to help me decipher the facts.

I also try to stay very aware of how I'm reacting to what I'm reading. If I find myself getting physically uncomfortable as I read, I stop. If I find myself thinking or saying out loud, "What? Really?", it's usually time to stop. If I feel a familiar lump in my throat, or start to tear up, I definitely stop. I'm really the only judge of what is or isn't too much. Some days, it's ALL too much. Other days, I can take it. I'm sure this blog can be too much sometimes. Maybe it's too much to read that day, or that month. If that's the case, stop reading, walk away, and come back when you're ready. I'll always be here, ideally with a little hope to spread.

Lastly, I NEVER, and I mean NEVER look at real-life medical pictures. I actually scroll down so I can't see them, or I put my hand over the screen so they're covered. If I want to see what a lupus rash looks like, or a bad case of angioedema, I can just check out old pictures of myself from ER visits past. The pictures are just too much for me - so I don't look. Easy enough to avoid.

So be sure to filter while you surf, being sure to choose sites that offer accurate, objective information. If someone's ranting, you might want to skip it. If someone other than a doctor or medical site is offering medical advice, skip it. If someone is telling you to skip or alter your medication, or stray from your specific doctor's orders, I'd recommend finding another resource. And if it's something that's too much for you to read at the moment, take a breather. That's the BEST thing you can do for your disease activity!

Safe and happy surfing!

Wednesday, December 18, 2013

'Tis the season...to overdo: Keeping lupus in check

Here we are, smack dab in the middle of the Christmas season, my very favorite time of the year. It is indeed the season of giving...but I must admit I tend to make it the season of doing. I unfortunately convince myself that these final weeks of the year are the best time to catch up on, finish up, finalize, and accomplish all of those things I've left outstanding throughout the course of the year. It's the busiest time of year, and yet I decide to make it even busier.

But this year, I've tried a different tactic. I've attempted to make it the season of saying "no". And thank goodness -- with my mini-flare still afoot, a ton of Pillbag shows I'd previously committed to, and a holiday event I volunteered to co-chair for Dee and Bee's school, I've had plenty (read: too much) on my plate. Details on how all that turned out to come in a later post...

For now, let's just focus on the opportunities I took to say "no". Hopefully, it will motivate me to continue doing so - and maybe you'll get the nudge you need to take a pass, too:


*Said "No" to a conference call at 3pm on a weekday: Nap time is nap time. Was it a bear to find another convenient time to talk? Yes. Were we a bit pressed for time because of the re-schedule? Sure. But my colleague and I made it work, the project stayed on schedule, and no lives were lost. (See? Things don't necessarily fall apart just because we say "no"...)

*Said "No" to an impromptu lupus event where I was asked to set up a book signing: I had four days notice, the event was on a weeknight, and the venue was two hours away...a perfect recipe to ignite my disease activity even more. So I politely said "no", and asked for a rain check.

*Said "No" to two additional Pillbag gift shows this season: No doubt members of my family already think I do too many of these during the holidays - so they'll be happy to know I actually turned DOWN two of them. It's hard passing up on opportunities to capitalize on the busiest time in retail, but I did it. And I don't regret it for a moment. (I haven't had a moment to do so!)

*Said "No" to hosting Christmas dinner: With our brand-spanking new house and nice new kitchen appliances, I was sure I would host our family dinner. But my sister asked if she could do it, and in the spirit of the season of not overdoing, I said okay. There will be many more dinners to host, ideally ones when I'm not in a mini-flare. Three cheers for not being too proud to say "No", and kudos to my sister for being sly enough to ask so that I wouldn't host. (If there's any doubt that my sister knows what she's doing when it comes to keeping my disease activity at bay...doubt no longer. She's a pro - every lupus patient should be so lucky to have a sis like mine!)

And I'm not going to lie to you - once I got in the habit of saying "no", the word really did start to roll off my tongue. Accept another volunteer opportunity at the girls' school? Nope. Cook dinner when my in-laws were in town? Not a chance. Run extra errands to knock things off my list? No, no, and no. I just got in the habit of thinking of my health first, rather than letting my desire to "do" get in the way.

It's a wonderful season, this season of not overdoing. I hope you've been able to enjoy it, too!

(Now, before you think that I was flawless in my ability NOT to overdo...think again. Stay tuned for the next few posts!)

Monday, December 9, 2013

New Pillbag Charity of the Month - Michigan Lupus Foundation!

Many thanks to Lupus Foundation of Florida for being our Fall Charity of the Month, and thanks to those of you who purchased pillbags during the last few months. Know that your donation went to a wonderful organization!

Now it's time to move on to our December/January charity - the Michigan Lupus Foundation, headquartered in Southfield, MI. The Michigan Lupus Foundation folks have been eager to support my Pillbag and Despite Lupus endeavors, and I'm looking forward to working with the organization during their Annual Symposium in April 2014. More details to come as we solidify plans - but it looks like it's back to the mid-west for me this Spring. Hooray!

It's not too late to order a Pillbag (or two) for Christmas. Purchase one today to use as the perfect stocking stuffer, or add it to your own Christmas wish list. Either way, I'll look forward to receiving your order!

Wednesday, December 4, 2013

St. Aidan's Holiday Marketplace -Dec 6 and 7 - your one-stop shopping extravaganza!


Alright, Northern Virginians - it's time to shop! Cross everyone off your Christmas list this year by stopping by the annual St. Aidan's Holiday Marketplace this Friday and Saturday, between 9-2pm. St. Aidan's is tucked away in the heart of Mount Vernon/Alexandria, but it's worth the trip. Yours truly is co-chairing the event, and I'm so excited about the variety and caliber of vendors we have slated for the Marketplace. Of course, the Pillbags will be there, too - stop by, grab a cup of hot cocoa, and enjoy the shopping extravaganza!

WHERE: St. Aidan's Episcopal Church
               8531 Riverside Dr.
               Alexandria, VA 22308
WHEN: Fri., Dec 6th and Sat., Dec 7th, 9-2pm

St. Aidan's will also be hosting their annual Christmas Tree and Wreath Sale the same weekend. Bring the family and grab a tree while you're there. Hooray for one-stop shopping!