Wednesday, August 31, 2011

Lupus instinct - go with your gut!

Babies are fascinating, aren't they? (Baby Bernadette happens to be adorable, too, so it makes it that much easier for wonderment to take hold!) But I've recently been observing Bernie when she takes a
6- oz. bottle, and I'm amazed with the pattern that has emerged.

About 80% of the time, she drinks the whole thing, right up until about 5 oz. At that point, she usually stops drinking, comes off the bottle, and looks around, completely satisfied. But if I sit there long enough (like 30 seconds) with the bottle close by, she'll see the bottle, decide she should finish off the rest, and downs the last ounce, only to have that last ounce come right back out about 3 minutes later. It's as though her gut is telling her that 5 oz. is sufficient, but once she lets her head in the game (by seeing the unfinished bottle and thinking that she should just finish off what she started), she pushes herself an ounce too far and then she pays for it.

Now - don't get me wrong - the whole ordeal isn't a big deal. She could care less whether she spits up or not. She's not in any pain, she's not inconvenienced in the least, and I think it's only her mom and her mom's clothes that really get the brunt of her decision making process. But I've realized there's a pattern. And I know I'm guilty of pulling the same stunt myself.

How many times have I been running around like crazy, trying to accomplish this, or do that, and I find myself yawning. My gut reaction? Wow. I need a nap. Right away, my body signals that it's time to stop. But ever so quickly, my brain decides to weigh in on the decision, and before you know it, I find myself silently chanting things like, "finish what you started", "don't leave it for later", or, the worst, "just one more minute." 

I KNOW what I should do - my body's giving me the international sign for fatigue, right? (Well - I know - it could be a sign of something else involving oxygen, carbon dioxide, and the like - but just let me run with the fatigue thing for a minute.)

So my gut instinct - my very first reaction - is that I should take a nap, or at least stop what I'm doing and make a quick assessment. But my very NEXT reaction is to let my accomplish-driven personality take over. My inherent desire to leave no task undone (or zero milk in the bottle, if you will), takes over - and I think myself into doing too much.

I realize Bernie isn't suffering from any sort of 11-month old can-do attitude syndrome, but she is thinking the whole thing through a bit more than maybe she should. Good thing is that most of the time, I help her decide wisely. And thankfully, I listen to my gut a lot more than I used to. Let's hope I can continue to help Bernie listen to hers!

Friday, August 26, 2011

Vitamin D: potentially stopping lupus in its tracks

I know I've blogged about Vitamin D before (here, here, and here), but I thought this latest article (brought to my attention by the Alliance for Lupus Research) from the NY Daily News is a good one. I especially like the following excerpt - a take on Vitamin D that I haven't heard before. (And if I have heard it, it didn't sink in!)

"The hope is the Vitamin D doses stop or slow down the part of the body that can overactivate the immune system and trigger lupus troubles, which include joint pain, fatigue or fever. Or, as Cynthia Aranow, a rheumatologist leading a Vitamin trial explains, "Are there ways of lowering what drives lupus?""

Enjoy the article, and the weekend. Looks like many of us, including Despite Lupus headquarters are going to feel the effects of an earthquake and a hurricane within days of one another. Stay safe!

Monday, August 22, 2011

Lupus lesson: making "the best ever" stick

I admit that I'm a frequent user of the hyperbole - the phrase "the best ever" has been part of my repertoire for a very long time. In fact, I heard Deirdre saying it just the other day. That shows you how often it comes up in conversation among the Gorman girls. (And yes - Deirdre and I agree that our recent trip to England really was "the best ever.")

But the idea of feeling "the best ever" came up at my most recent talk in Cambridge - though it's not the first time I've heard about it. When I hear from other lupites what scenario makes them feel the "best", I get a ton of responses: some feel great on vacation, others feel great staying home. For others, it's after a weekend of napping, an afternoon of walking, or following a massage, a hot bath, or both. Maybe your "best ever" comes after an emotional catharsis or an alleviation of responsibility. Whatever it is, have you ever thought of making note of that great, lupus-free moment, and then attempting to recreate that scenario so that you can feel "the best ever" more often?

I used to think that I felt "the best" after about 4 days into a week long vacation. By that time, I would have had time to recover from the stress and/or fatigue of traveling, the stress of my job, and the general worries of leaving home with errands/task/duties unfinished. By day 4, I was feeling pretty good and I'd forgotten about most of that stuff. That was, of course, until day 5 hit...and I realized that my vacation was coming to an end, the stress and fatigue of traveling was right around the corner, and my job and everything that went with it was waiting for me. That was enough to undo all of the good that the vacation was supposed to do in the first place.

Of course, this happens to most of us - with or without lupus. But the question that I wanted to answer was this - in the course of my normal life with lupus, how could I make every day feel like day 4 of vacation? Sure, doing away with a full-time, 10-hour a day job was a step in the right direction...but that wasn't the only thing that was stressing me out or causing me to flare. The fact was that even outside of my work, I was constantly on the go. And before a vacation, I was the worst. I was always running around, trying to squeeze in every last errand before leaving. I would clean the house and do all of the laundry the day before, and I would pack the morning I left. And the moment I stepped off of the plane after vacation? I would hit the ground running - pushing myself to pick up right where I left off. No pacing, no easing back in. Just full speed ahead.

Was I allowing my vacation (or even one measly day of it - day 4) to do any good? Was I doing everything I could to manage my disease? Not really. Even on the smallest scale, what could I do to make the rest of my days as worry-free as day 4?

I decided to start with day 3, 2 and 1 of vacation. But to do that, of course, I had to start with day 1, 2 and 3 BEFORE vacation. I'd have to pace myself for days before leaving. I couldn't leave everything until the last moment, and most of the time, I'd have to forgo a slew of errands/tasks/to-do's before leaving so that I was in good shape the day I left. I'm telling you - it worked wonders...and it continues to work today.

So here's to finding your own personal "best ever" and making it least until day 4.

Thursday, August 18, 2011

Lupus accommodations at work - check out this resource!

My local lupus foundation just included a link in their most recent e-newsletter to the Job Accommodation Network, an organization that provides free expert advice about job accommodations for disabilities in the workplace. I'd never heard of JAN before, so I took a moment to check out the site - and there's a wealth of information available for people with lupus. Here's the link to go directly to the lupus part of their website - what constructive, valuable information!

Monday, August 15, 2011

Making the most of your Can-do list

One of the topics we talked about during my most recent seminar in Cambridge was Guilt - why we feel it, but most importantly, how we can release ourselves from it. I found in my early years with lupus, the more I thought about what was suddenly out of my reach due to my illness (work a full time job, get pregnant whenever I wanted, enjoy a long day at the beach), the more guilty I felt about the limitations the disease put on my life and the responsibilities and expectations I could no longer fulfill. But now I know that I was too focused on what I could no longer do because of lupus, rather than what I could still do, despite lupus.

One of the ladies attending the workshop echoed this sentiment, citing her travel "can-do" list as a perfect example. She admitted that there were things she could no longer do because of lupus - adventures like climbing Mt. Everest or hiking the desert being examples. In addition, she knew there were places she couldn't go because of her disease, countries that required that she get a live vaccine to get into, or that had insufficient health care facilities for emergencies. But after she compiled a list of her "can't do's", she realized there were a heck of a lot of spots where she could go. Her "to visit" list dwarfed her "can't visit" list by miles.

And the same is pretty much true for all aspects of our life with lupus. I've met people who, because of their illness, can't finish school, work full time, bear children, or a dozen other limitations. And those limitations are hard to handle sometimes. But for everything that we can not do, there are a ton of things that we can still do. I propose that we work on beefing up our "can do" list first!

Wednesday, August 10, 2011

You are what you HEAR you are

Okay, so I admit: when you take a 2 1/2 year old and a 10-month old to Europe, you're bound to have some stories to tell. Thankfully, most of our stories are good ones. The girls are great travelers - pretty easy going, yet easily excitable and entertained - which is great. In fact, I'd categorize our 7 hour night flight to England as spectacular. Bernadette fell asleep taking her bottle during take-off, and we didn't hear from her for 3 hours. She woke up for about 45 minutes after her monster siesta, and then went back to sleep for another two. Really. She did. In fact, she couldn't have been more cooperative. *
Deirdre was awfully compliant, too. She fell asleep less than an hour and a half into the flight, and logged about 2 hours straight. She woke up for a little bit, but then fell back to sleep for almost another two hours. It allowed Johnny and me to get a little shut-eye during the flight, at least enough to get us through customs, checked in and settled in the hotel room before feeling the jet lag. But a couple of naps later and a good dose of fish and chips (well - actually - of scones and crumpets), and we were ready to rock. All in all, a fabulous showing by the Gorman girls - one that we would repeat in a heartbeat.

The return daytime flight to D.C. was good, too. Not quite as spectacular as the outbound flight, but still a good one. (Encouraging, because both Johnny and I have caught a case of the travel bugs. It's hard not to when we have such a good trip!) And the oohs and ahhs over the girls from fellow passengers certainly helped. When kids are being good on a plane, they always look adorable, don't you think? And the people sitting around us were nice of enough to recognize that fact. In fact, one lady pulled me aside while Bernadette and I were waiting for the loo, telling me how sweet and adorable the girls were. Bernie ate it up, of course, throwing her cutest looks right there on the spot. The woman also remarked on what good travelers the girls were - and I replied with a "thank you, but the flight isn't over yet" kind of thing. And she replied, "Well, it helps that you and your husband are so calm." Nice, right?
So then, fast forward about an hour, and Bernie finds herself ready for a nap. Unfortunately, she was having a tough time getting comfortable. Her fussiness lasted all of 45 minutes or so, and I had to do a lot of fancy footwork to get her settled and keep her quiet, but it was okay. No real screams or outbursts - just fussiness. But I can tell you - normally, by about minute 25, I would have been a little fussy myself. But because someone had just remarked upon my "calm" demeanor, I actually kept it together. I mean, how could I not live up to the title? I couldn't believe how powerful those words were - that they actually prompted a series of actions and reactions that allowed me to keep my cool. It didn't even feel like I was trying to stay calm - I just was. My fellow passenger's compliment gave me the boost I needed to think and act positively - all while juggling a fussy, sleepy baby. Fascinating, huh?

So we discussed a very similar phenomenon at my lupus seminar in Cambridge. We talked about the fact that so many of us don't look sick, even during the worst of flares. And with that incongruence of what we look like compared to what we feel like, we often hear "You look great", which, on a really bad day, can be a tough one to field. I've been there - I know.

But how about looking at it from another point of view, and letting the fact that someone thinks we look good be a point in our favor, one that we can capitalize on, and one that should give us a little boost, just when we need it the most? The fact of the matter is this - the phrase "you look great" is a compliment. I know there are times when people aren't being sincere, there's baggage attached, or you feel like your physical symptoms are being downplayed. But put those instances aside, and let's consider the generic, no-strings-attached "you look great" comment. No matter how bad you feel, the fact that someone tells you that you look good should make you feel the teensiest bit better. At least, it should if we let it.

Of course, it's not a cure-all, but it is a feel-good opportunity. And the more we allow ourselves to take these kinds of comments at face value - the better off we'll be, don't you think? Why shouldn't we get a little spring in our step when someone pays us a compliment. We have lupus, yes, but that doesn't mean we can't be hot tamales, right?

Monday, August 8, 2011

Back from the UK, with lessons learned!

Our trip to the UK was fabulous!

As you can see from the pictures, the girls thoroughly enjoyed themselves. Deirdre was the sweetest little flower girl ever (biased, I know, but the pictures don't lie!), and Bernadette loved roaming the old cobblestone streets of England. They ate their way through every fish and chips joint in the country, and enjoyed every minute of it. We're glad to be back, but we're already looking forward the next Gorman adventure!

As far as the trip and my health are concerned, I don't have a single swollen to digit to report. I got plenty of rest (Johnny made sure of that), and the girls cooperated for both naps and for 10-12 hours of sleep at night. I had no excuse but to rest up! And the Despite Lupus seminar in Cambridge was great fun. We had a super turnout, and great conversation. The comments and questions were astounding. I definitely learned a thing or two!

I'll be sharing my thoughts on my most recent travels later in the week. Look for thoughts on "You are what you HEAR you are", "Making the most of your Can-Do lists", and "De-stressing, vacation style."