Monday, April 25, 2011

My spa-rometer

Starting about 15 years back, professional spa treatments and I became fast friends. That was before lupus had set in, and in those days, the spa treatments always came in the form of massages. I didn't have them often, most of them coming once or twice a year as a reward for a job well done from my company or an appreciative client, but when I did, they were a welcomed treat.

Once lupus arrived on the scene, however, massages had to take a back seat - the pain and inflammation in my joints were too much to handle on their own, and there was no way I was going to pay someone to rattle those joints even more. So, just like most things when it comes to lupus, I made a change. Instead of a massage, I opted for a facial, or sometimes a manicure/pedicure, although I usually skipped the massage part of those services, too, as my jaw and hands/feet were some of my sorest joints. But as long as the service required as little jostling and prodding (and as little movement on my part) as possible, it was relaxing and enjoyable.

Later, as my health improved, I slowly worked back up to full service facials and mani/pedi's - including the massage part. It was a sign that my body was healing...and even though I only had them once in awhile, I relished in the fact that life was very slowly returning to normal.

The next step on my spa-rometer was to try an exfoliation body treatment...acknowledging that even though I might not be ready for a full-body massage yet, the idea of being exfoliated from head to toe with the equivalent of granulated lotion sounded right up my alley. And you know what? It was! (For those of you who like your back scratched, I think exfoliation treatments might be for you, too.) I loved being scratched all over - it was so relaxing and it felt great. And my skinned glowed for days afterward. And given the fact that my joints felt good enough to enjoy the treatment was cause for celebration. Healing was continuing, and my choice of spa treatments was a telltale sign.

And the most recent benchmark that I've reached on my spa-rometer? The massage! That's right - I've worked my way back to a full-body massage - having no pain, soreness, or inflammation in sight - paving the way for an enjoyable and pain-free massage. I still only have them as a special treat...but my annual massage came just a few weeks ago, and it felt just as good as it did pre-lupus. You wouldn't ever know this body was chronic-illness ridden - and aside from my bony looking fingers - I don't think the massage therapists would guess it, either. (Of course, I ALWAYS disclose the fact that I do have lupus - it's very important to clue them in to what's going on medically/physically.)

Already looking forward to next year's treat - although I may even try to fit in another treatment later this year. Why not do a little living well, despite lupus, eh?

Friday, April 22, 2011

Doing the RIGHT thing

Piggybacking on Wednesday's post, I read a quote recently that my girlfriend posted on her LinkedIn profile. It stuck with me, and is just too perfect not to share, given that I was just talking about the benefits of getting out of bad habits and getting back on track. Here it is:

"If you don't have time to do it right, when are you going to have time to do it over?"

This is true in so many respects - with lupus, with kids, in life in general. We only get one shot at this whole thing - why waste time trying to cut corners, push the envelope, or "get away with something" when there's a chance we'll just have to pay for it in the long run? I'm all for making the most of my life, despite lupus, but when it comes to some of the essentials like getting rest, taking my meds, or seeking treatment when I know my body is in distress, why mess around? With two little girls at home, I won't have a chance to "do" their first years over again. So every day, I have to do what I need to in order to be alive and well, for them. I was just elaborating on this point in a Shelfari discussion of my book: Whatever it takes to do this lupus thing right, I need to do it. If I don't seize the opportunity this first time around, lupus might not give me a second chance!

Wednesday, April 20, 2011

Breaking the habit before I break a (sweet) tooth

I am on a real streak...make that a "sweet" streak. Between the chocolate ganache cupcakes my neighbor brought over recently, the Easter candy sitting in my cupboard (in those fun, oh-so-springy colors), and the string of birthdays we've had, for which I've made batches upon batches of homemade sweet tooth is in full effect.

I've always had a sweet tooth - homemade cookies are my favorite, with ice cream being a close second - but I've usually been able to get away with it. I balance it out with plenty of fruits and vegetables, chicken, beans, and the like, and do my best to fit in a few rounds of exercise each week. I feel good grabbing a treat here and there - because I know it's not my go-to.

Until now.

Recently, I've found myself reaching for a cupcake instead of an apple in the afternoon, and grabbing a bowl of ice cream instead of a bowl of strawberries sprinkled with a little powdered sugar. (Okay, make that a lot of powdered sugar) after dinner. And when I say "and", I mean "and." I'm no longer choosing to satisfy my sweet tooth with a treat once a day...I'm now supplementing my diet with a handful of M&M's in the morning, a couple of cookies in the afternoon, and then helping myself to dessert after dinner. It's awful - but my body has completely become accustomed to the sugar.

So now, it's time for a little detox. Nothing super emptying my cabinets or ridding the house of everything sugary and sweet (although that would help.) I'm not pulling out all the stops quite yet, just gently persuading myself to get back on track by re-instilling the concept of "the choice."

Choosing either the M&M's OR the cookies OR the after-dinner dessert. I make choices in my life with lupus everyday - now it's time to make a few choices in the kitchen. It's merely a matter of becoming conscious of the habit I've gotten into (and grown comfortable with), and turning it on its head.

I remember doing the same thing with fatigue years ago. For so long (all TOO long, that is), I functioned half the day on empty...running myself far past the point of exhaustion every afternoon before stopping for a nap. I'd become accustomed to functioning like that, and the bleary eyed, spacey, almost painful state of fatigue that I experienced every day was just part of the deal.

Until I wised up.

I started taking my nap BEFORE I reached that breaking point, and that's when life started to get a whole lot better. Today, I avoid that point of exhaustion like the's not fun, and I don't want to ever get into that routine again. It's a habit that I've broken - hopefully for good.

Now to work my habit-breaking magic on my sweet tooth.

Monday, April 18, 2011

An appill a day...

Would you mind helping me with a little R&D for a Despite Lupus complementary project I have brewing? Check out the poll at the right...and answer as many questions as you can. I appreciate it!

The poll's subject? Pills, pills, and more pills. Those of us with lupus certainly know our way around a pharmacy - what with the myriad prescriptions we've been given since day one of our diagnosis. I consider it a MAJOR victory to be down to 2 actual prescriptions and a couple of OTC's -  adding up to a measly 8 pills a day, 4 of which are calcium supplements. Three cheers for pill-pare-down!

Shortly after I was diagnosed, I had my sights set on being pill-free, thinking that would be a reasonable goal to set for sometime down the road. But after 4 pretty rough years of lupus disease activity, tons of flares, and dozens of prescriptions later, I came to the slightly more realistic goal of simply taking as few medications as possible (working closely with my doctor every step of the way.) That goal allowed for a much healthier perspective toward my disease, and a much more emotionally satisfying one, too. If a couple of pills keep me healthy, stable and strong (not to mention mobile, upright, and energetic), so be it. I'm perfectly pleased with my drug cocktail at the moment. I can run, jump, and do cartwheels, right alongside Deirdre. What else could I ask for?

Thanks again for stopping by the poll, and I'll be sure to fill you in on my research findings. I've got something cooking for sure - can't wait to tell you what it is!

Wednesday, April 13, 2011

D.C. Walk for Lupus - Join us this Saturday!

The walk is here! Cross your fingers for great weather this weekend, as the lupus community in the Maryland, Virginia and D.C. metro area take on the 2011 Walk for Lupus Now on Saturday, April 16th. My own lupus support group team has done a phenomenal job of raising money - earning t-shirts, a tent, and even cupcakes for the day of the event - way to go, team!

In the area and want to join in the fun? Come on out to D.C. on Saturday morning, take a stroll down Pennsylvania Ave., and be sure to stop by the Despite Lupus table while you're there. I'd love to see you and say hello! (I'll have books available, in case you need one of those, too!)

Here are details - note that you can register the day of the walk, but pre-registering might make things easier. Either way, registration is free. See you there!

DETAILS: The 5th Annual DC Walk for Lupus Now - 2011. We will walk down Pennsylvania Avenue, NW starting at 13th street down to the Capital and back. We walk rain or shine!

DAY AND TIME: April 16th, 2011, 8:30 am - 1:00 pm

LOCATION: Washington D.C. - Pennsylvania Avenue, N.W. between 13th and 12th St. N.W. - Next to Freedom Plaza. Need a map? Click here!

WHEN TO GET THERE: Registration begins at 8:30 a.m. and walk starts at 9:30 a.m.

ONCE YOU'RE THERE: The Walk starts at 9:30, but you'll need to go to Registration first. The best way to get through registration is if you have already registered online. You can sign up online either as an individual walker or as part of my support group's team (LFA Alexandria Support Group.) Just fill out the information form (along with the health consent form, etc., etc.), grab your tennies, and set your alarm clock! (Note that at Registration, you'll receive a FREE knapsack per registrant, courtesy of Human Genome Sciences, the creator of Benlysta.)

Donations are accepted at the walk, but note that you don't have to raise a single dollar to participate. We'd just love to have you show your support by being there and taking part in the fun!

Do you want a Walk for Lupus Now! shirt? Every registered walker who raises $100+ will receive a shirt at the registration table.

A few final details...

Four of D.C.'s famous food trucks will be at the walk. Look for their tasty treats along the way.
The Walk is 5K or 3.1 miles. No one is required to walk the entire way, do not push yourself.
The Walk starts and ends at 1200 Pennsylvania Ave, so if you get tired feel free turn around!
There will be 3 water stations along the walk route
Crowd friendly dogs are welcome! Metro Mutts is sponsoring a water bowl stop for pups! (I don't think Darwin will be making an appearance, but he'll be there in spirit!)

If you have any questions or need assistance, people in 'Volunteer' or 'Staff' shirts will be able to help you.

Monday, April 11, 2011

Lupus Rally in Indiana - Mark your calendars!

Living in Central Indiana and want to support the cause? Mark your calendar for Tuesday, May 10th, when the LFA Indiana chapter will host a Lupus Rally. Come learn about the Governor's Proclamation, Benlysta, and more!

Details below, taken straight from the LFA's flyer:

Who should come? Anyone that is affected by lupus (patients, family, friends)

Why should you come? Learn about the Governor’s Proclamation on Lupus, talk with experts on Lupus issues, hear a very special guest speaker, and learn about the new drug for lupus, Benlysta

Sandwiches/Beverages Served
6:30pm to 8:30pm - Tuesday, May 10
3760 Guion Rd (IOPO Building)
Indianapolis (near Westview Hosptal)

Look for balloons & signs

Lupus Rally in Indianapolis SAVE THE DATE - MAY 10, 2011

317-225-4400 or 800-948-8806

Friday, April 8, 2011

By jove, I think she's got it!

So, who's the "she", and what has she "got", right?

"She" could be baby Bernadette, who's just recently figured out the whole eating thing, taking dishes like mashed bananas, pureed sweet potatoes, and ripened avocados to a whole new level. And just like her sister, she's a real messy one. If she's not "smocked", there's no hope that her outfit will survive the feeding. (Speaking of, here's Bernie spending a wee bit of time in her favorite place...the laundry basket.) I guess a mother's love has blocked my memory, because I just asked Johnny if Deirdre was that messy as a baby, and he just looked at me and laughed. Then, and only then, did I remember feeding Deirdre in the nude (her, not me). That was the only way we could save her clothes from total destruction. Neat eaters, my girls are not. But cute, sweet and funny, they have all locked up.

Or "she" could be Miss Deirdre, who's recently taken a keen interest in her personal stash of big girl panties. We have a long way to go (I think you have to start potty training in order to be potty trained, right?), but I'm hoping her level of fascination with Hello Kitty and Disney Princess underwear continues. I'm headed off for a weekend with the girls, but upon my return, I think I might be pulling out the M&M's and the egg timer. (I've heard that's all you need. Cross your fingers!)

But alas, the "she" is NOT Bernadette, nor is it Miss Deirdre. In this case, the "she" is me. What have I licked? The concept of going to bed. On time. Before I turn into a pumpkin. For the last few nights, I've been working on a sewing project. And in true Sara fashion, I was determined to get it done in record time. Of course, that usually means staying up past my bedtime to finish just "one last stitch", or telling Johnny as he heads up the stairs, "I'll be right up...", but madly sewing away 45 minutes later.

But not this time. For the past week, at approximately 10:30pm each night, I've said, "Enough." I've just stopped what I was doing, turned off my sewing machine, and walked up the stairs. I didn't take a few extra minutes to clean up (which is so unlike me), nor did I prep things for the next day. I just stopped, mid-backstitch, and went to bed. ( the "mid-backstitch" part is a little exaggerated, but you get my point.)

I wish I could impress upon you how atypical this is for me. I don't "stop" doing anything. I finish it. In one fellow swoop. (Come to think of it - I bet I don't have to explain further, do I? You're a finisher, too!) But, after 10 years of lupus living, I think it's finally sunk in that rest is more important than a cross-off. You can only accomplish so much on your to-do list in the course of a single day - and sometimes (make that most of the time), you just have to compromise on that list for the sake of your health.

How rested do you think I've been every morning since I've gone to bed at a decent time? How much more energy do I have to devote to my project during the day? And how refreshing is it to put aside the project while I can still function, rather than working on it until the point of exhaustion?

How far I've come, and how proud I am. I think Chapter 3, Section 1 (appropriately called, "Problematic trait #1: Productivity") of my book is finally sinking in. How about that!

Monday, April 4, 2011

Lupus hair loss - more tips and tricks

My girlfriend, Karen, sent me the following hair loss tips, and they're just too good not to share! She's seen her fair share of hair fallout due to lupus, so these come to you first-hand from someone who's been there (along with a few comments from yours truly.) Take a look and see if any of these might help. As far as I'm concerned - you can sign me up for the flat ironing trick. I think it would be great!

Per Karen:

1) Hair thickening shampoo and conditioners: They don't stop hair loss but do make thin hair appear thicker. Favorite brands: Nioxin, Aveda Pure Abundance. They are drying, so you need to alternate with a good moisturizing conditioner.

2) Hair thickening products: Aveda Pure Abundance Potion. (It starts as a powder and transforms into what Aveda calls a "lotion".) She has yet to find a pomade solution, since these can be tricky because some make hair greasy and thinner looking - and nobody wants that! A little experimenting may be in order - and I expect a full report, please!

3) The flat iron curling trick: She says, "This is by far my favorite thing! I "you tubed" how to curl your hair with a flat iron, and I'd been to a hair dresser who did my hair like this. It adds waves and instant volume - much better than curling iron curls. I only do it occasionally so as not to damage remaining hair. But it really does make me feel like I have lots of hair."

If that's not a ringing endorsement, I don't know what is! She says it's also better to put hair up that has body - so if you end up sweeping it into an up 'do - all the better.

4) Headbands and bobby pins: rather than a regular ponytail, she suggests putting hair up in a head band, scrunching it forward and then put in a ponytail. Just seems like more hair that way. Use mini hair clips over elastics and even smaller ponytails to disguise the lack of a ponytail.

5) She says this anecdotal, but Vitamin C and B-12 B-6 seem to help slow down the loss (and she read about it somewhere. She's also found that fish oils make her hair super shiny and thicker as its growing.

6) Lastly, she says hair spray helps flatten the new growth wild hairs. The new growth hairs actually help add volume, though, by lifting hair at the roots (those stubborn cowlicks I referred to last week!)

Friday, April 1, 2011

Lupus Q & A with Dr. Erkan

The Hosptial for Special Surgery (New York, NY) recently posted the questions and answers to an interview conducted with Dr. Doruk Erkan, Rheumatologist, on their Facebook page.

Take a look at this link when you have the chance - some interesting questions, with straightforward answers. Note that the interview is actually geared toward Lupus and APS (Anti-phospholipid Syndrome), but the HSS has a great section of their website dedicated to lupus. They even have Benlysta listed as an actual treatment (rather than a pending possibility!) for the disease. How cool (and quick) is that!

If you have time, take a minute to browse their site. The sections (among others) that caught my eye are as follows:

Your Own Best Advocate: How to be an Active Participant in Your Care

How to Reduce Corticosteroid Side Effects

Acupuncture for SLE: Can it Work for You?

Relaxation Imagery and Lupus: How it Can Help