Monday, May 30, 2011

Lupus fundraiser in NYC next week - oh, what a night!

The S.L.E. Lupus Foundation (NYC) has quite the lupus bash coming up - if you're in the city, and feel like stepping out for the cause - check out the details for the big event here. It's S.L.E.'s Seventh Annual Night for the Fight party, complete with open bar and food as well as raffle and silent auction. 

The when and where, direct from their website:

Wednesday, June 8th

6:30pm – 10pm
at the Sky Room
330 West 40th Street, 33rd Floor
New York, NY 10018

This year's event will take place under the stars, overlooking Times Square at Sky Room's rooftop lounge. We'll have a 3.5 hour sponsored open bar, delicious appetizers and deserts from specialty food vendors, music by DJ BestOut, a luxury item raffle, silent auction, and more.

As their tag line says, it's sure to be "the most fun you can have fighting lupus!" If you go, be sure to check out the silent auction...cross your fingers my book gets a few bids!

On a separate note, I've been traveling over the past week, but I'm back and staying put for awhile, so I should be back to blogging on Wednesday. Looking forward to telling you about my travels!

Friday, May 20, 2011

100% Weaned!

I can shout it from the rooftops now - Miss Bernadette has officially been weaned, and my risks of any infections (or jinxing myself) from breastfeeding are over! Yippee!!

(Note - you've been forewarned - this post is about nursing. Stop reading now if necessary!)

I'm thrilled to say that I nursed Baby B for almost 7 months, without even as much as a hint of an infection. When Deirdre was little, I nursed for just over 6 months, and was on antibiotics a total of 6 times for mastitis. Yikes! Not sure why I had such trouble the first time. Nonetheless, I'm really glad I stuck with it two years ago...but now I realize how tough it is to be sick with a fever and infection for a week out of every month or so. It didn't seem ridiculously awful at the time (if it had been, I definitely would have thrown in the towel earlier than I did), but now I can see just how great the first 6 months of nursing can be. Yeah, Bernie!

When I think about the circumstances that contributed to my success, I wonder if the following might have had something to do with it. Keep in mind, of course, that these are my musings only...and they could have everything or nothing to do with it. As you know with a lupus body, you never can tell sometimes!

Possible contributors this time around:

1) I knew what I was doing - while I can't say that 2 kids makes one an expert, I can assure you that I definitely knew a whole lot more about nursing than I did when Deirdre was born. Plus, I wasn't as concerned about the whole "process" the second time around, either. On baby #2, you think, if it works, it works. If it doesn't, it doesn't - it's no biggie either way. I've got bigger fish to fry with two under two!

2) I rarely skipped a feeding - with Deirdre, I skipped an afternoon feeding almost everyday, opting to pump instead so that I could get a little extra rest while someone fed her a bottle. This time around, I decided to nurse almost full-time, realizing that pumping during that afternoon feeding actually took longer (and was often less productive) than if I just fed Bernadette myself, working in my nap in and around that feeding. Having full-time help definitely made this possible - because even if I was napping when Bernadette needed to eat, I knew I could wake up, feed her, and then hop right back in bed. Rest was essential, and I think I got even more this time around.

I also think that the fact that I had Deirdre running around made a difference, too. I mean, who has time to sit and pump when you've got a two-year old raring to go?

3) I wasn't worried about building up a milk supply - this time, I didn't do any extra pumping, which kept my production at the level of only providing for Bernie on a daily basis and not an ounce more.

4) I wasn't worried about "equal opportunities for all" - the advice from the lactation consultants this time around was this: empty one side, burp, and then offer the other. If she still wants to eat, great. If she doesn't, don't worry about it! So that's what I did. I didn't worry about switching half-way through every feeding, or watching the clock, or logging my minutes. When she ate, I fed her. When she stopped, I stopped. I still switched sides from one feeding to the next, and I made sure that she got as much out of each feeding as possible, but I think cutting out the stress of tracking my time, in addition to emptying completely before switching really helped.

5) I was healthier - no doubt about it, I felt better during Bernie's first 6 months of life than I did after Deirdre was born. Very little joint pain, very little disease activity overall, so I wasn't as prone to infection as I was the last time around. And as I said, the fact that I was battling a fever and horrific pain from infection 6 times over last time didn't help matters at all.

All that said, of course, there could be no real concrete explanation for the success I had this time around. As my doctor said - different baby - different bacteria. I'm certainly no stranger to medical mysteries, so who knows! I'm just happy that I made it!

Monday, May 16, 2011

A matter of perspective

You know me and my to-do lists - if I'm not crossing off, highlighting, or adding an item, it must be nap time. I can't deny that my daily lists bring me much relief, allowing me to rid my busy little brain of all of the tasks (menial or not) that I need/want to accomplish, freeing up space so that I can think clearly. With all tasks recorded on paper, I no longer have to juggle them in my brain. In fact, I think once I jot something down on my list, it's temporarily removed from my memory, until, of course, I see it on my list and my memory is jogged.

Jotting down my little "to-do"s transpires all throughout the day, but it seems that my greatest brain dump comes at the close of each day. I get into bed, tell Johnny goodnight, turn off the light, close my eyes, and within about 10 seconds, at least three things come into my mind that I have to remember to do the following day. So on my light goes, out comes my pen and paper, and down go the items on my list. Sometimes, in the case of a to-do list epiphany that transpires in the middle of the night, I forgo the light, and just jot down that which is preventing me from falling back to sleep. But in the event that I can't, ahem, read what I've scribbled down in the wee hours of the night, or can't decipher my short hand - I'm at a loss.

Such was the case with a recent item on my to-do list. Here's what I'd scribbled down on the pad at my bedside, right before going to bed:

"Book toes."

Hmmm. Now what in the heck did that mean, I wondered, the following morning. I racked my brain trying to remember what in the world I was thinking of  - something with my book, obviously, but what was up with the "toes"? Did I mean "woes", or "throws", or should there have been a space after the "o" as in "give a book to..."? I tried to think outside the box - wondering if I had a book overdo at the library, or if it was a reminder to get a certain gift (a book about feet, etc.) for a baby. Despite my best efforts, I just couldn't figure out what I needed to do, regarding a book (mine or otherwise), that had anything to do with feet.

And then it hit me. "Book" wasn't a was a verb. (Kudos to the rest of you who picked up on that after the first tenth of a second. Want to start editing my to-do lists?)

"book toes" was a simple reminder that I needed to make a spa appointment for that girls weekend I took a few weeks back. It had nothing to do with Despite Lupus, nor any other book for that matter. It was a call to action - a simple "book pedicure for upcoming girls weekend" - which I was totally missing because I was simply looking at it the wrong way.

This matter of perspective is oh-so-relevant to our lives with lupus, don't you think? Situations arise daily (if not hourly) in our dealings with our disease that force us to choose a perspective: 

For example, how do I view taking a nap everyday? Do I see it as a sacrifice, or as an opportunity to recharge so that I can function normally?

How do I view the fact that I'm medicine-dependent? Do I see it as a burden, or as a blessing that a handful of pills can give me the ability to be a perfectly-functioning mother to two little lovebugs?

And how do I view the experiences I've had with lupus, those that I now share with thousands of people via my book and my blog? Do I resent the fact that I have a chronic illness, or am I thankful that I've found a way to put that fact to good use?

I can't say that I'm capable of looking at life with lupus with such perspective all of the time, but I think if we can remember to do so 9 times out of 10, we'll be well on our way to living well, despite lupus.

Friday, May 13, 2011

Vacationing with lupus: to cheat or not to cheat

As mentioned on Monday, I recently returned from a short family vacation with Johnny and the girls. We had a super time, and I’m pleased to say I was able to keep lupus at bay while traveling. No swollen digits, no joint pain, no rashes from the sun – so I must have done something right.

In fact, when I sit back and think about the choices I made over the course of the trip, choices regarding my health, that is, I realize I try extra hard not to break my healthy habits while I’m away. On vacation, it’s always tempting to break the rules– fitting in a little extra shopping time instead of a nap, or skipping the umbrella so that you can get a better spot at the beach…but in my experience, it never pays.

Want to know what I hold fast to, and what I let slide while I’m traveling? Here’s my “to cheat or not to cheat” list:

Nap: No way do I cheat! My nap seems to be my saving grace, particularly when traveling. Whether it’s the extra effort required for the actual travel days, the evenings when I stay up a little later than normal, or the extra activity I fit in during the day, that nap is my chance to recoup and return to 100%.

Sun: Nope – not worth it. Staying covered up is relatively easy for me. Having 10 years of lupus under my belt, my entire wardrobe has pretty much been converted to limited sun exposure outfits. I will do tank tops, if I know I’m going to have some decent coverage, but almost always opt for pants over shorts. I always bring a nice selection of hats, and I never head down to the beach or poolside without a cover-up on. And finding a table under an umbrella usually isn’t a problem…if it is, most of my vacationing cohorts know I’d prefer to eat indoors. It’s not worth the better view if it’s going to make me sick in bed for the rest of the trip!

Medicine: Never in a million years. My meds are like my safety net – I know they work, I know they keep me relatively healthy – why mess? The LAST place I want to flare is on vacation…not only because I want to enjoy my travels, but primarily because my best resources (my doctor, my bed, my pharmacy, etc.) are too many miles away to nip the disease activity in the bud. Stuck in a hotel room with debilitating pain isn’t my idea of a get-away. (Not that immobilizing pain at home is a real treat either, but you know what I mean!)

Help: I try not to cheat on this one either, and Johnny will tell you I did a particularly good job letting him help during this last trip (probably because I was spent by the time he came back to the hotel room every afternoon!) Truth is, vacations are meant to be enjoyed – and if that means my parents or in-laws want to help with the girls because they want a little grandparent time, I let them. I usually try to strategically plan out how things are going to work on vacation before we go – figuring out how I’m going to get in my rest first, and then working our schedules around it. In fact, before kids, Johnny and I traveled with Darwin and Henry quite often. And we’d decide in advance who was going to do the morning shift, night shift, and how we’d work it out around my naps. Planning is key – trying to manage a flare because you’re doing everything yourself is not.

Sleep (at night): Okay, this is where I let things go a little. I still stick to my “no less than 8 hours” rule, but if I stay up to visit a little longer than usual, or if we watch a movie for an extra ½ an hour, I fare okay (primarily because I know that nap is around the corner.) It’s just like anything else…you have to choose wisely. If I stay up late one night, my nap the next day has to be a little longer (or earlier in the day) than usual.

Food: I don’t mind letting things slide in the nutrition area, either. I’m a bit of a foodie – so I love trying new restaurants, especially if they have a separate dessert menu (always a good sign!) I’ll have plenty of time to get back on track to the fruits and veggies once I’m back home – so I indulge a bit. I do find that finding a good smoothie for breakfast or opting for a salad with grilled chicken at least a night or two while I’m on vacation helps to balance things out.

Exercise: We try and do a lot of walking on vacation, so usually this one works itself out on its own. But do I stick to my three-days-a-week treadmill routine? Nope, not really. I almost always take my running shoes…and if I can get in a mile and a half here and there, great. But I’d much rather relax a little bit, and enjoy that time walking around, exploring our vacation spot with the girls rather than chaining myself to the hotel workout room. Once I’m home, there will be plenty of opportunity to restart my routine. (That said, I remember when I was working long hours in an office, I loved the opportunity to workout while on vacation. I wasn’t finding time to fit it in at home, so it was actually a treat while traveling. Glad I reversed that!)

Wednesday, May 11, 2011

Lupus Fundraiser in Alexandria, VA - May 24th - Mark your calendars!

The Lupus Foundation D.C. – Maryland - Virginia is partnering with Food Matters Restaurant to sponsor a Lupus Night, where 10% of sales will be donated to the foundation.

No RSVP necessary; just show up and spread the word! Details are as follows:

Tuesday, May 24 - 5:00pm – 10:00pm
Food Matters Restaurant
Cameron Station
4906 Brenman Park Dr
Alexandria, VA 22304

An evening of great food/beverages and an opportunity to support a great cause! Show your support by stopping by Tuesday May 24! And look for me at the front, behind the stack of books. I'll be there, signing away!

Monday, May 9, 2011

Back from vacation unscathed

A very happy belated Mother's Day to all of you moms out there. I had a perfectly spectacular day - spending it with my two favorite gals in the whole world (and their dad, who's pretty spectacular, too!)

We just returned from a 6-day vacation, so we opted to lay low on Mother's Day. I'd had enough good food and fun while we were away that I didn't need another brunch buffet  - spending almost 4 days in Hershey, Pennsylvania will do wonders for anyone's sweet tooth!

Johnny had a work conference in Hershey to attend, so the girls and I decided to join him. It was great! I was a little concerned that the two days he'd be attending the conference would be tough for me - Paola didn't come with us, so I was on my own in terms of fitting in my nap each afternoon - but it couldn't have worked out better. The girls and I fared quite well on our own - hitting the zoo, the park, and all of the Hershey highlights - and making it back for mid-afternoon, simultaneous siestas each day.

I can't deny that I was feeling pretty good about myself - I felt like quite the accomplished lupus mom. I did just enough to show the girls a good time, but not too much that I wore myself out. The pool waited until Johnny could join us, as did some shopping that Deirdre and I had wanted to fit in without Miss Bernie. Both outings would have been a bit taxing with the two ladies and just myself - so I waited for my back-up to arrive to help man the post.

We tacked the Hershey trip on the tail end of some time with Johnny's family in Philadelphia - fitting in several parties and outings while we were there. We've been busy - but I don't have a single swollen digit to show for it - which is a sure sign of a successful traveling experience. I didn't always have such positive experiences on the road - later in the week, I'll talk more about how I've changed my ways to ensure that my vacations really ARE vacations, not just invitations for a lupus flare!

Friday, May 6, 2011

D.C. Lupus Symposium - this Saturday!

Just a reminder that the 16th Annual DC Lupus Symposium is this Saturday, May 7th from 9-2pm. I'll be there with a table and my books...looking forward to seeing you there!

Below are details, straight from the Lupus Foundation DC Maryland Virginia:

Lupus Foundation of America DMV Chapter Annual Symposium
May 7, 2011
9:00 A.M - 2:00 P.M.

Location: Carnegie Endowment for International Peace
1779 Massachusetts Avenue, NW
Washington, DC 20036

Parking: 1800 Massachusetts Ave, NW**
Washington, DC 20036

**The entrance to the parking garage is off of 18th Street

The 16th Annual DC Symposium is this Saturday, May 7th. This event is brought to you by all efforts and funds raised by the 5th Annual DC Walk for Lupus Now! The Foundation is very excited to have 9 different sessions and a special keynote presentation titled Lupus and Heart Damage: What do we know and What Can We Expect? The keynote speaker is Dr. Mariana Kaplan who is an Associate Professor of Internal Medicine in the Division of Rheumatology at the University of Michigan Medical School.

Other topics to be covered at the largest lupus education event in the Mid-Atlantic include:
New Drugs & Therapies in Lupus
Lupus & Endocrine Issues
Living Well with Lupus
Lupus & Adolescents
Clotting: APLS
Connective Tissue Diseases Overlapping with Lupus

The Foundation is also offering 3 optional support sessions for Men with Lupus, Family and Friends, and Meditation and Stress.

Light refreshments will be provided, but packing a lunch or snacks is encouraged.

See you there!

(And stay tuned to next week's posts...I'll be sure to fill you in on what I've been up to. It's been awhile!)