Thursday, December 31, 2009

Steps to living well in the new year

I've had the pleasure of talking with several people over the past few weeks, all of whom have taken a vow of "living well" in the coming year. How do they plan to achieve their goals? Here are just a few of the collective steps they'll be taking. Inspiring, aren't they?

- Seeking a 2nd opinion from a specialist who might provide answers to a medical enigma
- Talking to a boss about making accommodations in the office
- Signing up to have groceries delivered
- Finding a babysitter to come in a couple of hours a week to get a much-needed break
- Hiring a cleaning lady to help with household chores as their third little one is on the way
- Accepting help from a family member who has been begging to assist
- Trying out a support group meeting in the New Year
- Being assertive with the doctor - enough that he takes notice of the recurring foot pain that's been around for way too long
- Being firm (yet tactful) with family when it comes to their opinions about "all of those medications."

Have any to add? Let me know at sara@despitelupus.com

Tuesday, December 29, 2009

Selfishly ringing in the new year

While I don't typically make a long list of New Year's Resolutions...I do tend to take a good, hard look at my list of goals and long-term to-do's to see how things are going. I like to reassess at the year's end, so that I can figure out where I'm headed in the coming year.

Of course, it's clear to me that maintaining my present level of good health is paramount going forward, so that's one of my top priorities. It always will be, as far as I'm concerned. I wish I could say it always was...but that's simply not true. Years ago, I had many more pressing issues to contend with (or so I thought.) But, eventually, I wised up, hence, the book, the blog, etc. But actually making the effort to put your health (and yourself) first can be a tough one.

I was recently talking with a girlfriend who has made it a priority to stay in shape during her 2nd pregnancy. (Not body builder shape, mind you...just staying fit with the help of a special pregnancy fitness trainer.) But she's finding it hard to be, as she calls it, "selfish" - taking time just for herself, away from her family, to do something that she wants to do. Sure, it's good for her. But I suppose she feels guilty putting herself first.

Maybe you, too, feel guilty doing something to promote your own health and wellness. Maybe it's hard to find time to take care of "you" when you're always taking care of everyone else. Maybe it feels wrong to do something for yourself for a change. Maybe it appears selfish to put yourself first, but maybe it's the best thing you could ever do for yourself, too. Getting in shape, cutting back on foods or drink, or creating goals for yourself that will better your health and your relationships isn't selfish -it's smart. It's courageous. And it's time.

Feel free to email me with your healthy goals, resolutions, or reassessments for 2010. I'd love to hear all of the "selfish", good things you'll be doing in the coming year!

Wednesday, December 23, 2009

Preparation is key

The weeks that precede Christmas are often referred to as the season of Advent, which means "arrival" in Latin. It is the celebration of the arrival of baby Jesus on the 25th of December that is expected, so the entire month (plus a day or two in November) is a time of waiting and preparation, as we anticipate Christmas day.

"Preparing" for Christmas probably involves the same for many of us. The physical preparations are easy to name: shopping, wrapping, baking, decorating, although not so easy to fit into our already, busy schedule. Nonetheless, we find time. Taking time to stop and think about what the season is all about, however, isn't so easy.

I need to realize that emotionally preparing (or more aptly, reflecting) on the meaning of Christmas is what lays the groundwork for my physical preparations. For it's not the actual gift that I should focus on; it's the special person for whom I buying it that matters. It's not the number of cookies I bake; it's the idea of sharing the "sweetness" of the task with others.

Mentally preparing for Christmas (being thankful for my health, counting my blessings of wonderful family and friends, reflecting on the goodness in my life) isn't quite as much fun as crossing all of those to-do's off of my list, but it certainly is important. It's what allows me to make it to Christmas Day every year - so, in fact, it's the only that thing that really does matter.

I find the same to be true with my quest to live well with lupus. The physical changes I've made to keep my disease at bay are, of course, important, but it's the emotional mind shift I've made to do (or not do) what it takes to live well that sets the tone. It's mentally preparing to adjust to life with lupus that paves the way for me to make good decisions physically. Renewing that commitment allows the choices I'm faced with throughout the day that much easier to accept. Taking a nap rather than sledding with my family or postponing a gift wrapping session so that I can go to bed on time don't just happen on their own. I have to choose well - each and every time. And the only way to do that is to be prepared to do so.

So with the new year approaching, we have the chance to, once again, prepare to live well. Maybe this past year you weren't ready. Maybe it was too hard to make good choices. But now is your chance. Prepare to do what it takes to get better. Prepare to do what it takes to be healthy. Prepare to do what it takes to live well, despite lupus.

Monday, December 21, 2009

"More"...of Despite Lupus

Check out the latest Despite Lupus appearance...on More.com! I'm so pleased to have an an excerpt from my book included on the magazine's website. Both the site and the magazine offer a ton of valuable information, interesting articles, and great resources, even for those of us who aren't quite 40 yet (their official target audience.) Click here to read DL's spotlight!

Friday, December 18, 2009

I'll never learn. The sun is hot.

Back in October, my husband and I took a quasi-anniversary trip to Hawaii. I call it quasi because it was, first and foremost, a golf trip. My husband's hobby/favorite pastime/obsession is golf, and he's managed to become a golf course rater for GolfWeek. Every year or so, he has a golf trip (actually, it's a golfing extravaganza), that he's required to attend. The raters have several trips to choose from, but when he saw the opportunity to return to our honeymoon spot (it's been nine years), he took it!

So I went along for the ride, knowing that I'd be on my own during the day, but would have him all to myself for dinner and beyond. Thus, I called upon my good friend Maureen to join us for the trip. Laying by the poolside sipping umbrella drinks is always more fun with a friend. She said yes, and even brought two of her friends along. We had a blast! We were only with Maureen and her friends (now OUR good friends) for 1/2 the trip, so we got in plenty of 2nd honeymoon time, don't you worry. Oh, and Johnny got in plenty of golf, too.


That long-winded introduction is all in an effort to set the stage for my most recent sunning mishap. As you know from previous posts, (or if you have lupus, you already know this), I don't do sun exposure. I used to. To the hilt. But for the first, oh, five years with lupus, these pasty white arms saw no sun rays at all. I wore hats, long sleeve shirts and pants EVERYWHERE - and I didn't invest in a new bathing suit for a very long time. I had no reason to. I never wore one. But, over the last few years, as my health has drastically improved and my disease activity has been next to nothing, I've been able to venture out into the sun now and again, limiting (and testing) the sun's effects - first up were my legs, next were my arms, and eventually, I bought a new suit. Make that two. Of course, I'm always diligent about sunscreen, hats and cover ups, but letting myself be in the sun for just a short period of time feels good, and I feel like I've earned it. I wrote a post this summer about the fun in the sun Deirdre and I had - and I know that years ago, I would have been forced to pawn off that outing to her dad. But not now!


That said, when I'm at the beach or pool, I always search out an umbrella (ALWAYS), and usually keep my cover up on until I'm ready to take a dip. And of course, I lather up with sunscreen before, during and after. That's what's so crazy - I'm such a routine person, and I have this little checklist of the things I do in preparation for the sun: hat- yes, sunscreen -yes, cover up -yes, and yet one day during our trip to Hawaii, I skipped the lotion. Ugh! What was I thinking? Actually - here's exactly what I was thinking:


We were moving hotels that day - so I had already checked out of my room when I headed down to meet my friends for a last minute visit poolside. I KNEW I would be under an umbrella the whole time, I KNEW I would be down for less than an hour, and I KNEW that with a cover up on and a towel fashionably draped over my legs, the only thing really getting reflective sun would be my arms. And because they're the tannest (if you can call them that) part of my body, I thought they could handle it. Hmmm. Shows you how much I know.


Even though I wasn't "out" in direct sunlight for ANY length of time...my arms (and a little v-neck portion of my neck) ended up getting burned. Not a bad burn. Not a burn that hurt. Just a burn that made me feel flu-ish for a few hours that night. No swollen joints, no achiness, just some flu-like fatigue and nausea, but enough to remind me that I have lupus. And sun and lupus don't mix.


It's silly, really. The burn could have been prevented, and while my few hours of fluishness passed before it could make a dent in our plans, I just shouldn't have let it happen. Onward and upward however. There's always the next Gorman Family vacation in February - this time to Jamaica. Hat - check. Lotion - CHECK!


So there you have it. You can write a book about living well with lupus, and you can still manage to fall off the wagon. Oh well. Feeling how bumpy that road is was a good reminder.

Wednesday, December 16, 2009

Holiday laughter and cheer


Need a little something to get you through your last full week of work before the holidays? Check out Deirdre's visit to see Santa. I ask you - what's NOT wrong with this picture?
Of course, to this smitten mom, Deirdre even looks cute when she's crying!
The Gorman family had a great time at Breakfast with Santa, regardless of the tearful photo shoot. And Deirdre thinks this picture is so funny hanging on the fridge. She can name everyone in it, too. Cute AND smart? How lucky are we!

Monday, December 14, 2009

Travel tips in the form of a question

During the month of November, my friend and blogging colleague Maria Pfeifer at My Life Works Today kindly hosted a book discussion of Despite Lupus on Shelfari. The participation was great - and there were some fabulous questions posed by readers and Maria alike. Some were more DL specific than others, but I enjoyed all of the comments, questions, and feedback. It was great to connect with others who could relate to the situations and experiences I wrote about in my book. There are so many people who understand out there - it's amazing!

I thought I'd feature some of the dialogue from that discussion on my blog from time to time, starting with a question about how I manage my book tour travel. The question was posed by one of the participants, and I can tell you it didn't take me long to craft an answer - this is an issue that I've had to deal with from the very first signing I did. Whether it's flying across the country, driving two hours, or heading up the street to my local coffee house, every signing I've done has required forethought, strategy, and usually a little compromise. I'll let the question, and subsequently, the answer, explain:

***
QUESTION: So, my question to you Sara, is: how do you keep your lupus under control while traveling? I find that traveling is one of the hardest things on my body any more and I have learned that sometimes it's just better to stay home rather than deal with a possible flare. I admire your ability to make appointments to do a book signing with the assurance that you'll be able to commit to it and perform well enough to convince people to buy your book!


ANSWER: That’s a great question – and I actually started to expound on my travel limitations in my last response, but figured perhaps it would come up later in our discussions. So thank you for asking!

First, I’ll mention that when my disease was active, travel was the first thing to go. My husband and I found it particularly difficult to stay put, but it became crystal clear that every time I’d hop on a plane (or even in a car for more than an hour or two), I would flare. I think the stress, fatigue, and exertion involved in packing, commuting, traveling, etc. was just too much for my lupus-ridden body to handle. So it had to go. We cancelled vacations, postponed others, and became extremely conscious of our out-of-town commitments. I skipped a lot of trips…which stunk, but knew that staying home was the best way to keep my body stable. And during those weekends when I stayed home? I’d sleep, sleep, sleep! I’d be lucky if I made it down my driveway to get the mail, much less across the country. I realized that traveling was the last thing I needed to be doing.

But, knowing that traveling was a hobby that I really enjoyed, I had the goal of being able to work it back into my plan. I started slowly, and came up with a few fool-proof guidelines that I still adhere to today:

1) Allow a day before and after travel to recover: The day before I travel, I scale back on everything – errands, cooking, events, etc. – and the day after, I cancel all plans so that I can rest up and recover. At this point, I’m able to have a semi productive day before and after, but there were times when I would faithfully take an extra day off of work after my trip in order to make sure I could recover. It was a full day of doing nothing and it really helped.

I also take extra days during the trip to make sure I’m rested up TO travel – I found that weekend travel (like a Fri through Sun) is too much. When I can, I book a few extra days so that my travel days aren’t too close together. My husband and I used to be quite the weekend warriors (b/c a weekend getaway was a cheap, quick, nice way to vacation)…but now that we’ve determined it’s just too taxing, we opt for longer, more relaxing vacations.

I’ve had the luxury of staying with friends or family on several of my out-of-town signings…so I’ve just extended my travel plans to spend a few extra days relaxing before heading back. In fact, when I was in Indiana in August, I had three separate events…so I had to be very strategic about booking each of those with a couple of days in between, PLUS allow for time on either end to relax before traveling. It was a week and a half trip…but I felt great before, during and after!

2) Never travel during my nap time – This one can be tricky…but it’s just a limitation I’ve learned to work around. My husband, in particular, has been great about scheduling flights, departure times, or making commitments on the other end of our travels to accommodate my nap. We just know that mid-afternoons are off-limits, unless I can fit in a good rest before or after. And I’ve learned that napping in the car to and/or from an airport doesn’t count. 

And during my recent trip to South Bend, I had to make a choice between traveling during my nap or my daughter’s nap. It was just the two of us flying together, and figuring that the most important thing is that I be rested (in order to handle any of her shenanigans), I opted to fly back home right in the middle of her nap. Turned out I was right! Because I wasn’t trying to fight fatigue (or swollen joints for that matter), I was in the right frame of mind to help her power through the flight. She did great…but I know it would have been a sad scene had I tried to skip my nap!

3) Plan, plan, plan: I always consider how my travel days are going to play out – often times calling ahead to a hotel to ask for special arrangements to nap, skipping visiting time with family or friends to rest, or booking events according to my own needs in order to make sure I’m not pushing myself.

For instance – I had quite a time settling on a date and time for my recent signing at Notre Dame. I had a choice of two time slots – from 2-4pm or 3-5pm – prime hours for traffic/exposure/etc, according to the bookstore. But neither worked for my nap schedule, and since I was traveling in that same day, I knew I couldn’t skimp on my rest. Thankfully, the University was extremely flexible (booking me from 4-6pm, and moving something else around), and my aunt and uncle (and dad) who hosted me for the event were very accommodating (ushering me to bed at every turn and chauffeuring me so I could rest and relax). Everything worked out – and I felt great!

Because I do have limitations, however, I have been forced to decline several events simply because I couldn’t make the travel arrangements work. It’s a bummer…but the worst thing I could do is show up for a signing (for a book about living well) and be sick! So first and foremost – I keep my health a priority.

Most importantly, because of these book signings, I’ve had the chance to realize two things:

1) Having met hundreds of people with lupus, suffering from the physical ailments of lupus, I’m reminded just how sick I used to be. These people are struggling to put one foot in front of the other, and it reminds me that not so long ago, I was, too. I’ve worked very hard to be healthy, stable and strong….I can’t ever forget that. My disease activity didn’t all of a sudden just go away – I had to work at it. Those steps I outline in my book make up the actual blueprint I used to get healthy and live well, and I have to continue to work those steps (not overextending myself, passing up on engagements here and there, etc.) in order to maintain my current state of health.

2) When I show up for these signings…it’s inevitable that someone comments on my appearance – on the fact that I look so healthy. Of course, I’m flattered, but I realize that looking and feeling well (and being able to project that wellness) is an important part of my message. I suppose if people are able to see that I’m perfectly mobile, without an ache, a pain, a fever or swollen gland, or even a tuft of hair loss, and doing what I’m doing, perhaps it’s a symbol of hope that life with lupus can get better. That life can improve….despite lupus.

Friday, December 11, 2009

Something's gotta give

You may have noticed that I was "blog post-free" all of last week (and a few days the week before.) I wish I could say I had pressing matters to attend to. Or that my computer crashed (although we were without Internet access for a day or so.) Or that I was stumped for ideas to blog about (which has never, and if you know me at all, probably will never be the case.) But alas, those things simply didn't happen. What did happen is that I found myself short on time, and with the holidays, and Deirdre, and my naps, something had to give. Blogging on my website simply had to wait.

Years ago, I was struck by an Editor's note in Arthritis Today magazine, written by editor-in-chief Marcy O'Koone. She talked about how many things she had on her to-do list, and how she had every intention (and expectation) to accomplish them all. But as is the case with most of us, sometimes, we just can't get all done. And that's when you have to choose. You have to put on your thinking cap, evaluate the tasks at hand, and do a little prioritizing. I HATE putting off things that I want and plan to accomplish. But when I have to do so (like I did last week), I try and reward myself for a) putting my health ahead of the "euphoria of accomplishment", b) putting my organizational skills to work and prioritzing what I want to do, and c) giving myself permission to weed out the stuff than really can wait, even if I don't want it to.

It felt good to take care of myself. With Thanksgiving travel, late nights with family, and plenty of catching-up upon our return, it would have been easy for me to overdo. But I didn't. And you know what I have to show for it? Not one achy joint. And not one swollen gland.

So thanks for giving me a few days off. I needed it. Now the question is, do you?

Wednesday, December 9, 2009

The book's in good hands

I had the honor of meeting a gentleman from Human Genome Sciences this past weekend at a lupus benefit, and he was none other than the doctor heading up the research for Benlysta, the latest (and most successful) lupus drug to date, making major headway along the path to FDA approval.

I was thrilled to introduce myself, and though I didn't want to take too much of his time, I thought it only appropriate to pass on a signed copy of my book to him. I'm sure he, more than anyone, understands and appreciates the importance of his endeavor, but should he need a little reminder, he can crack open that book, turn to any page where I describe the debilitating, life-altering effects of the disease, and know that what he is doing has the power to change lives. Lives of people just like you and me.

What a brush with fame. I had chills. In fact, I think I still do.

Monday, December 7, 2009

A holly jolly perspective

I get it now. Christmas through the eyes of a child. And my child, at that!

This year, Christmas has taken on a whole new meaning...because there's a little miss somebody who is enjoying every minute of this holiday season.

It started with the Macy's Day Parade over Thanksgiving - I've never given a second thought to those big, oversized, floating characters on the TV. But watching Deirdre's eyes light up as the floats, balloons, and music kept coming, it was if I was watching the parade for the very first time.

And then the Christmas decorations in our house; I've never had such a captive audience! She loves the santas and the reindeer, the wreaths and the nativity. She thinks those caroler figurines are the coolest, and she can't keep her eyes away from the Advent calender (what could be behind tomorrow's door?) And what's great are the lessons she's teaching me (or at least offering gentle reminders) about what Christmas really means. Here are just a two examples of how I'm rediscovering the true meaning of the season, thanks to Deirdre's fresh, new perspective:

Baby Jesus and the Nativity - Okay, so I've put my wooden figurine nativity set out for years, but it's been a long time since I've taken the time to really contemplate the reality (and profundity) of the scene. I think I've explained the scene to Deirdre, oh, maybe about a dozen times now, and each time, I think to myself just how precious that little baby in the manager must have been. Not sure if Jesus napped as well as Deirdre does, or smiled as big and brightly as she does, but I'm sure he was just as much of an angel (literally and figuratively) as she is. And I know his mother loved him more than anything in the whole world. I know - I speak from experience.

Advent calendar - So we're 7 days into the month of December, and Deirdre's opened the first 6 doors on her wooden advent calendar. I actually received the calendar a few years back (thank you, Jen!), but it always just sat untouched for the season. Sure, it looked pretty out on display, but I never took the time to enjoy and celebrate every day leading up to Christmas. Not only am I appreciating each day that goes by (because we're ceremoniously opening up a door each day), but I'm reminded that it's not the size, quantity, or value of a gift - it's the thought, the surprise, the experience.

So far, we've "found" four goldfish crackers, a few teddy grahams, a sticker, and a total of 31 cents (Johnny's contribution) behind those magical, wondrous doors. The change went upstairs in her piggy bank (where she has a whopping 56 cents now), and while she doesn't have any idea of the value of that change, she couldn't have enjoyed anything more than dropping those coins into that bank. And you should see her face light up when she opens a door and finds 2, count 'em, 2 teddy grahams waiting for her. She actually giggles, and loves fishing them out with her little fingers.

So what do we have to show for our first week of Advent? Not a lot. But Deirdre couldn't be happier! Forget all of the "stuff" - Christmas is about watching those little eyes light up as she opens each door for the first time. Priceless, I tell you. But more than that, it's enlightening.

Enlightening to see things through her eyes. Enjoyable to see the appreciation she has for the little things. Invigorating to rediscover Christmas from her perspective.

This idea of seeking out and benefiting from the perspectives of others is a common theme throughout my book, Despite Lupus. Even though I resisted (vehemently) this concept, entertaining the opinions, suggestions, and concerns of others was a major breakthrough along my path to wellness. First - it was a sign that I no longer felt like my way was the only way. It wasn't so much that I thought I had all of the answers (although with a nickname like "The Godfather," that might not be too far from the truth), but I thought I had a responsibility to know all of the answers, or at least fake my way through. I thought this unpredictable, unmanageable, painful life with lupus was my burden alone - but I came to find out that there were a ton of people out there, waiting and wanting to help me figure it out. And they had some pretty ingenious ideas on how to make life more bearable. I just had to ask.

Two, I was able to step back from the disease, and look at my life in a more clear-headed, unbiased manner. Was I being unreasonable about the things I was asking my body to do? Was I ignoring signs that my body was sending me? What was I doing right? What could I do better? Contemplating life with lupus through someone else's eyes can only help- it may offer a much-needed wake up call, making you realize the pain and suffering you've become accustomed to really isn't acceptable, or it may reinforce the tough, life-altering decisions you're making.

"When you have as intense and intimate a relationship with a disease as you do, it’s difficult to make unbiased, unemotional decisions. You’re embroiled in the fight of your life, therefore compromising your impartiality. You’re too accustomed to the pain, the pills and the discomfort to know when “enough is enough.” It may be impossible for you to overcome your bias completely; after all, it is your body. Realize that at this point, you’re incapable of having an honest, objective point of view and acknowledge the missing link that those around you might provide. Considering another person’s perspective doesn’t obligate you to accept or adopt all aspects of his/her stance. Instead, entertaining that person’s viewpoint can enlighten, inform and encourage. At the very least, you’ll be equipped to form a better, more balanced perspective of your health. " ---Taken from "Despite Lupus", Chapter 5, Communicate Wisely

Thanks, Deirdre, for helping me rediscover what Christmas really means. Now let's go open door #7!