Monday, February 28, 2011

The ultimate motivator

A few weeks ago, we were having a lazy morning in the Gorman household, lounging around in our pajamas for way too long and enjoying every minute of it. Bernadette was back asleep for her morning nap, I had crawled back into bed, and Deirdre and her dad were reading Snow White together at the foot of our bed. It was as laid-back as you can get - Deirdre still rubbing her sleepy little eyes, all of us chitchatting about what we might have for breakfast - eventually - once we motivated downstairs.

And then, as we were gathering ourselves together to make a move, I asked Deirdre if she thought I should hop on the treadmill before breakfast. In light of our super duper lazy morning, I expected her to say, "Oh no, Mommy. No treadmill today." But instead, she perked up and said, "Oh yes!" She went to the closet, pulled out my running shoes, brought them over, and started jabbering on about getting my running pants out of my drawer, about picking out a t-shirt for me to wear, yada, yada, yada.

Well - I guess she earned her wings as a personal trainer that day, huh?

I was flabbergasted that she answered in the affirmative. I was just sure she'd sense my lackadaisical nature, and hear the reluctance in my voice. But alas, like the whip cracker that she is, she overlooked it all and seized the opportunity to do something productive. Or rather, have me do something productive.

Of course, this reminds me of the encouragement we often get from loving friends and family members who are trying to help us make good, healthy decisions. Do we always want to hear what they have to say? Not usually. And do we follow their advice? Not always.

It seems that their offers to "do x" so that we don't have to, or their insistence that we "pass up on y" for the good of our health, often fall on deaf ears. I think it's a lot harder for us to make those good, healthy choices on our own. I can promise you that I had no intention of hopping on the treadmill that morning, until Deirdre encouraged me to seize the day.

I didn't want to hear what she had to say, but you know what? It was exactly what I needed to hear. I only d0 the treadmill a couple times a week...so it's not like I'm taxing myself too much. A little encouragement was just the ticket to fit in that last run of the week.

And there's no way I could have let her down - she was just so excited about the whole prospect. She even followed me into the playroom, coaching and encouraging me the whole way. In the end, it was the best workout of the week.

Let's face it: could anyone really say "no" to this face?

So the next time a loved one is trying to help - whether they're asking us to slow down, eat well, drink less, or exercise more - how about giving it a little more thought than usual? Think before you react, and consider the wisdom behind their suggestion. Can we bring ourselves to listen to what they have to say, even when it's not what we want to hear?

Friday, February 25, 2011

Fast forward: the doctor's office in thirty years

Our pediatrician's office is getting a make-over. Well, actually, their filing system is. We were just in for Bernadette's wellness visit, (who is doing fine, thank you for asking), and learned that the office's filing system is going electronic. This means that all medical records, appointment details, and test results will be kept in an online, shared database, making it easy for the staff in our practice to access our girls' medical history during each and every appointment. Every doctor and nurse now carries around a small, portable laptop into which they record everything that transpires while we're in the exam room - questions, comments, statistics, and concerns. It's all there - but it takes awhile.

Of course, this is because we hit the office on Day 2 of the implementation of this new system...so everyone is still getting up to speed. Data that was transferred over from paper is still being verified, so we had to suffer through a short round of questions regarding medical history that I know we've answered in the past. No big deal - it took 10 extra minutes - but it gave me a few extra moments to mull over the questions being asked.

It was your typical stuff - allergies, surgeries, hospitalizations for Bernadette, mom's medical history as well as dad's, and grandparents' medical histories, too. As I was listing the details of my mom and dad's medical history, it dawned on me that one day, Bernadette will be sitting there, in a similar office with her daughter, spouting off details of my medical history (as a grandparent, of course.) And I got to thinking about what she'd have to say.

My hope is that it goes something like this:

Doctor: And your mother's medical history?
Bernie: She has systemic lupus, but she's been symptom-free for years.
Doctor: Really?
Bernie: Yes - she doesn't seem to have trouble with it anymore. She did when she was younger. She even wrote a book about it. Do want to buy a copy for your office?

(I'm just kidding about that last part. Well - not really, but kind of.)

Or it could go something like this:

Doctor: And your mother's medical history?
Bernie: Ummm...she has lupus, I know, but I don't really know how it affects her. I know what lupus is, of course - she's made sure of that - but it's been so long since she's had to deal with it, I'm not sure what all was involved.
Doctor: Well, that's good news.
Bernie: Yeah, I know. She even wrote a book about how she learned to deal with it, about how she was able to get on with her life, have me and my sister, and do just about everything, even though she had this chronic illness. The book is called "Despite Lupus." I can probably even get you a signed copy if you want. I think it's on Amazon, too.

(You knew that was coming.)

Clearly - these kinds of conversations will take place with Deirdre, too. In fact, I'm being interviewed by a company today who is doing research for the development of a new lupus treatment (more on that later, if I'm at liberty to say), and when I told Deirdre that they were coming to the house to talk to Mommy - she said, "They talk to you about lupus?"

Uh, yes, Deirdre. They're going to talk to Mommy about lupus. Two year olds. What are you going to do?

Wednesday, February 23, 2011

Don't delay - start living well today

If you know me well, you know that I'm a huge Agatha Christie fan. I've read (and reread) a ton of her books, I've seen the Mousetrap twice, and the cats I had as a teenager were named Miss Marple and Hercule Poirot. Enough said, right?


So when Johnny and I were recently watching a documentary featuring David Suchet (the fabulous actor who has portrayed the famous Poirot in dozens of Agatha Christie movies), I was in heaven. The special feature, available on Netflix for all of you Poirot fans out there, followed Suchet aboard the infamous Orient Express - the train where murder and mayhem abound in one of Agatha Christie's greatest plays - The Murder on the Orient Express. Starting in London, we watch Suchet uncover the secrets of the train and learn why Christie chose the train for one of her most ingenious tales of murder.


I thoroughly enjoyed the show - lapping up each and every detail of the train's history. But one part of the documentary really stuck with me. It was an interview with a couple also aboard the train with Suchet. When asked how they'd chosen to travel via the luxurious Orient Express, here's what they had to say:


The gentleman's mother had always wanted to travel via the Orient Express. It was one of her lifelong goals - but she'd never seem to find the time, the money, etc. to make her dream come true. About a year before the documentary was made, however, her son made it possible for her to make the trip...and she couldn't have been more excited. But just a few short months before her long-awaited trip was to take place, she passed away unexpectedly. She never had the chance to live out her dream. Thus, her son (who was to have traveled with her), decided to follow through with his mother's dream, taking the trip with his wife to celebrate, not only his mother's life, but also their wedding anniversary.


I was struck by this story for two reasons: one, because a trip on the Orient Express appears on my bucket list, too, and two, because I was reminded how short life really is, and how little time we have to live life to the fullest. I think back to the time I wasted, fighting way too long and way too hard against lupus. I wised up not a moment too soon, of course - and have since learned to embrace the disease, incorporating it into my life so that I can still achieve my goals, pursue my plans, and live well, despite it.

Let that woman who missed fulfilling her goal by just a few short months be our motivation for acting today, rather than waiting until tomorrow. Convince yourself that today is the day you'll start napping, or eating well, or asking for help at work or at home. Act today, and you'll still have plenty of time to live well. You wouldn't want to miss the boat (or should I say, "train"), would you?

Monday, February 21, 2011

Cough up a contingency plan

As a part two of Friday's post - I want to touch on the concept of setting up contingency plans, because that's another integral step to making sure that you're living well, emotionally.


Every lupite's been there - you make plans, you try your best to keep them, but the day of, you feel awful and have to cancel. And once again, you're bummed. You're actually more than bummed - you're devastated. Not only do you feel crummy, but you feel like lupus has won again - stripping you of your ability to do anything you want to do when you want to do it.

I've experienced as many cancelled plans as the next gal - but I've found there to be a distinct difference between canceling my plans the day of, and anticipating that fact and then setting the stage for the possibility in the days preceding. Sharing (and even acknowledging to yourself) that you may have to bag out should make you feel a little more responsible, more assertive, even pro-active. And you should be empowered - as though you've anticipated lupus' little antics, and you're one step ahead of that sneaky devil.

Because it was imperative for me to preempt my cancellations, so that I didn't feel so blindsided when I couldn't make an event, I adopted a few golden rules when making plans. It did wonders for my attitude toward lupus - and I believe it made me stronger in the face of the disease. I hope these rules keep your positive momentum going, too!

1) When making plans with friends, always, always, always mention that you might have to cancel. Once it's out there, you don't feel half as bad canceling as if you hadn't said anything at all. Think about it - you're not admitting defeat - you're merely managing expectations. Yours AND those with whom you have plans. They'll thank you for it - and in fact, may even make a suggestion that is a little more accommodating for you and the limitations of lupus. Which brings me to rule #2:

2) If someone gives you an out, take it. If you know, deep down, that you shouldn't be going out with someone because it will really tax you - and then that someone says, "Hey, why don't we take a rain check?", DON'T be all lupus-like and say, "Oh, no - really - I'm fine." You're fibbing and you know it. (I can say that, because I was a professional fibber in my early lupus days.) And you're just saying that because you don't want to lose face. But believe me - when you go out and make yourself sick and have to pay for it for the next three days, you HAVE lost face. But if you preempt the exhaustion, and prevent the disease from acting up by calling off your plans, you're nothing but a winner. Don't be convinced otherwise.

3) When you do get out, give yourself the opportunity to leave early. Again, this is as easy as saying, either a few days before or at the beginning of the evening, "I may have to leave early, but I'm so glad I could come for a little while." Once that's done, you don't have to feel guilty or sheepish about slipping out the door before you turn into a pumpkin. You've set the stage - and you've set the expectation...especially for yourself.

Note that this may require some logistics - either drive separately, coordinate with a friend, or prep your driver that an early out may be required. For about 3 years straight, anytime Johnny and I would go out, we'd arrive at our destination, take two seconds to assess the status of my fatigue, pain, etc., and then agree on a time to leave. Half the time, Johnny would usher me out the door early. And every once in awhile I'd give him the nod that we needed to leave earlier than planned. No matter what, it was always understood that if I started to fade, we'd head home. Immediately.

(And now a very specific example: A few days after I was released from a week-long hospital stay, we agreed to meet up with our friends to watch a football game at a bar. I was still really weak, but I really wanted to go. It was my first real outing post-admission, and I had my heart set on showing my friends that I was still going strong. My sister, who had no intention of going along, got wind of the fact that we had these plans, and dropped everything to come with us. She knew I wouldn't feel up to staying the whole time, knew that I'd probably push myself to stay longer than I should for my sake and for Johnny's, and knew that I was in no condition to drive separately. So she came along - suffering through the first quarter of a football game that she had no interest in watching - and then lovingly helped me out to the car and drove me home after less than an hour. That was all I could handle - and had she not been there, I definitely wouldn't have left when I did. )


4) Create a safety net - Whether it's arranging a ride to or home from work, asking a friend to watch for signs that you're doing too much, or hiring a babysitter to make sure you get a nap, even if your kids don't (hypothetically speaking, of course!) - set yourself up to succeed. Living well, despite your illness requires forethought. It requires you to be strategic. It requires you to be creative. But it doesn't require a life full of pain and suffering.

Taking into consideration Friday's post as well - take the steps to live spontaneously, so that you can enjoy life when and if you feel like it. And set yourself up with a contingency plan, so that you don't let the guilt of bagging out get to you. You have to manage the world around you in order for you to live the way you need to, despite your illness!

Friday, February 18, 2011

The beauty of spontaneity - a learned approach to lupus

I am a planner. I always have been, and it seems that I always will be. But over the course of my 36 years - two things have altered my ability to plan the way I want to, and in fact, taught me the joy and beauty of spontaneity. The first was getting lupus. The second was having children.


Working backwards, there's no way around the fact that little lady #1 and little lady #2 have changed the way I do things. My house isn't quite as neat and tidy, my files aren't as organized, and my mind isn't quite as clear as it used to be. But for every area of my life that's a little less "planned", there are multiple reasons why I'm better off for it. For with the blessing of children comes the beauty of spontaneity - whether it's a last-minute trip to the park, stopping for a surprise ice cream cone, or coming up with an instant game of make-believe. The benefits of letting your hair down and having a little fun with your kids are immeasurable- the big belly-laughs and the grins from ear to ear are evidence enough. I can tell that I'm a better mother because of my ability to go with the flow (and not clean up afterward!)


When it comes to lupus - the benefits of being spontaneous might not be quite as obvious, but allowing yourself to be a little less scheduled is essential to coping with the limitations of your disease. Of course, for most of us type-A personalities, that spontaneity doesn't come naturally. So it takes a little practice. But I've found that when lupus is limiting my ability to "do", I have to remember that not everything in life needs a time slot. And, in fact, it can be a lot more fun (and enjoyable) when they don't. Pushing through the pain, just to keep an agenda has to become a behavior of the past. Doing what you can when you feel up to it has to become the new you. Your health and wellness depend on it!

Here are just a few simple examples of how you might start infusing your life with a little spontaneity:

Pick a movie, not a night - We subscribe to Netflix. We get one movie at a time, and we hold onto that movie for as long as we need to. If we're pooped at the end of the week, or don't have time to fit it in before hitting the hay at a decent hour, we put it off. We don't pick a "movie night" per se...we pick the movie, and then fit it in when we can. And just like most parents of young kids, we've mastered the art of watching a movie in two parts.


The same goes for lupites who are short on time, and long on fatigue. Don't feel up to a "movie night" once a week? Don't put unnecessary pressure on yourself to force a game face. Just fit in a few scenes here and there. Or pick another time that works better. When I was really suffering from end-of-day fatigue, we tried watching bits and pieces of a movie on Saturday mornings. Nothing too early - but it was kind of fun to wake up, be fully rested, and then settle back in to catch a few scenes. It reminded me that even though I was feeling pretty down and out, I could still be entertained (and stay awake long enough to do so!)


Take short, non-committal trips, rather than long vacations that you're locked into - When I was really sick, one of the first things to go was our travel schedule. Before lupus, we overbooked ourselves with vacations - every waking moment we weren't working, we were traveling somewhere new. And it took its toll. Very quickly, I realized that the packing, traveling, shuttling, etc. was too much for my body to handle, so we cut back a lot. What we tried NOT to cut out, however, were the day trips where Johnny would drive, I would bring my pillow, and we'd set out for somewhere close, but not too close, familiar, but not too familiar. It took the pressure off me to gear up for a big, eggs-in-one basket, blow-out vacation, and it alleviated any guilt or frustration either of us had if I wasn't feeling up to snuff.


Fit in the fun stuff - Feeling good? Make yourself feel even better. Take an impromptu walk on a gorgeous day, or treat yourself to a hot soaking bath on a cold, rainy one. Duck into Starbucks for a special treat - and have them make it just the way you like it, or skip the grocery store and do your nails instead. I never enjoyed being pampered as much as after a big flare. I'd go for weeks without wanting anyone to even brush up against a joint - but once I was feeling good again, indulging my joints in a paraffin wax treatment and hand massage never felt so good.

Pick a stress-free, pain-free activity that will remind you that you can still indulge yourself, you can still get around, you can still enjoy life - and you won't believe the mental boost you get!

On Monday - I'll talk about contingency plans - another important part of living emotionally well, despite lupus!

Wednesday, February 16, 2011

The privilege of planning...with lupus


Bernadette can swim! Of course, she needs a little help from her mom, but she's officially been inducted into the world of hotel pools and spas. Her first real dip, and she loved it. See the little guppie pictured at the right.

The four Gormans took a little trip to a local hotel this past weekend - enjoying the pool, the yummy room service, and the spacious accommodations (yes, even with two cribs, there were nooks for all of us to sleep soundly!). We had a blast - and we can't wait for our next little get-away at the end of April. Fluffy hotel robes, here we come!

We planned the trip a few months back - knowing that mid-February, we'd want to get away for a couple of days. Johnny put the whole thing together - picking the hotel, organizing the details, reminding us to bring our swim suits - but he had my blessing. Who doesn't want to get away in the middle of winter?

In planning the trip, I was reminded that, years ago, I wouldn't have been able to plan a trip that far in advance. Back then, there were no guarantees as to how I was going to feel one month to the next - and planning a get-away like that would have been futile. I was still working then, and didn't have the "living well" routine down yet - so I was usually pretty spent at least one or two weekends a month.

I didn't understand that napping regularly or going to bed on time during the week paved the way for good weekends. Back then, my strategy was to go, go, go during the week, and pay for it on the weekends. But how is that really living well? Why should we have to pay for anything? Why not just be a bit more strategic during the week, so that you never have to catch up...ever? Living well is, no doubt, a cumulative thing - building up your strength daily, warding off fatigue when you have the chance, and allowing your body to recoup when it needs to, rather than waiting until you can find the time in your busy schedule to do so - that's how it happens. Living well is not an every-other-weekend kind of a thing. Trust me. I've tried it, and it doesn't work.

Today - I couldn't be more thankful that those days of questionable health and wellness are in the past. But I haven't forgotten what it was like when I had to work around my "good" days. We actually got pretty good at being spontaneous, which is what you have to do when lupus or another chronic illness is afoot.
***
In fact, I found spontaneity to be an essential part of living well. Emotionally - it does wonders, reminding you that you can have a life, it just has to be a little, well, spontaneous. And physically, it let's you do things when you can, and encourages you to rest when you should. If planning is out of the question, master the art of spontaneity. It's a must!
***
Be sure to check back on Friday for a few tips on how to work spontaneity (and the concept of contingency) into your lifestyle - and a big thank you to Catherine for mentioning the subject a few days ago. You inspired me to "spontaneously" write this post - so thank you!

Monday, February 14, 2011

Don't look sick? Don't let it dissuade you from doing what you need to do!

When I walk into a room of lupus patients, you know what my first reaction usually is? "This isn't a bad looking group!" You know how it goes - we don't look sick, we don't even act sick most of the time...but those of us who have lupus know just how misleading our outward appearances can be. Our insides may be falling apart, our bodies ready to crumble to the ground - but if we don't look the part, it can be a hard sell to friends, family, and co-workers.

I remember, after a summer of sickness several years ago, a client came into the office for the first time in months. He took one look at me, and said, "You look great! Have you been running a lot? It looks like you're training for a marathon!" (Lupus does wonders, right?) I replied that, no, in fact, I'd been pretty sick, and he said, "Well, you look great. Keep it up." A week later I was admitted to the hospital for severe anemia, had a blood transfusion the first night I was there, and suffered a bout of pancreatitis that left me 10 pounds lighter than I already was. Eek!


(Now, as an aside, as frustrated as I could have been by the client's comments, I wasn't really bothered. You know why? Because my client was trying to be nice. He was attempting to pay me a compliment. No, he wasn't listening to what I was saying, but I didn't expect him to. I believe he's one of those that belongs in the last category that I talk about in my book - don't bother explaining, because they don't really want to know. And as far as I'm concerned - that's okay. Everyone you meet isn't intended to be your greatest chronic illness confidante. You can't share your trials with lupus with just anyone. So pick and choose your supporters well, and then just brush off the other guys.)

The other one I get because I don't look sick is the old "are you a drug rep?" routine. About once a year, I'll be minding my own business, waiting for my name to be called in the doctor's waiting room, when a pharmaceutical sales rep will come in the door, take a look around the room, and say something to me, like, "Is he seeing us today, or does he have too many patients?" The first time it happened, I didn't really get what was being said. Now...I get it.

Now, I can't deny - I don't mind being put in the "marathon training" category, and it definitely puts a smile on my face to think that I don't look sickly enough to be in the doctor's office as often as I am. But when we don't look sick, we can't lose sight of the fact that we may still be sick...and that we need to do whatever it takes to stay well, regardless of what others think.

What do you think that drug rep would have thought if he'd seen me pulling out of a handicapped spot at the doctor's office?

What if my client saw me at the airport, being pushed to the front of the security line in a wheelchair?

What if my friends didn't understand why I couldn't attend the afternoon party because it conflicts with my nap?

I'm here to tell you that the answer to all of the above has to be, "Who cares?" The fact that others might not think we're sick cannot prevent us from doing things that we need to do to stay well. We have a responsibility to ourselves not to let it.

Believe in yourself - you know your body best - if a wheelchair helps, use it. If a nap is necessary, take it. You have to learn not to care what others think. That's rule #1 in living well, despite your chronic illness.

So the next time you need help with something, but you don't look like you do - ask for it anyway. Maybe you can educate someone while they're assisting you.

And if you can't pick up the kids because you feel crummy, but you don't look like you feel crummy, ask someone from the carpool to help out anyway. Set a good example for your kids and take care of yourself. Wouldn't you want them to do the same?

Friday, February 11, 2011

Sticking with the program

...aka Minding my P's and Q's (and X's)!

That's right, folks - no official blog post today, as I'm sticking to my word that I wouldn't work on a blog post after 10pm the night before it's published. Last night, 10pm came and went, and I didn't have a post finished for today. So - you'll just have to have to wait until I'm good and rested (read: Monday) for the next update from the files of Despite Lupus.

Until then, I'll leave you with two quick stories about my sweet girl Deirdre:

Dialogue exchange between me and 2-year old Deirdre:

Mommy: Deerdee, wait just one minute - I have to take my medicine.
Deirdre: Mommy, you sick?
Mommy: No, Deerdee - I take medicine because it keeps me healthy. Do you remember why I take it?
Deirdre: Lupus?
Mommy: That's right! I take it because of lupus.

If I can get her to say, "Live Well! Despite Lupus!" with all the vim and vigor she can muster, I'll be sure to capture it on film. She'd be my best marketing strategy yet.

And if there's any doubt whether or not lupus gets enough press in our household, check this out:

Deirdre was playing on my laptop the other day. I peeked into the room where she was "working", and she was typing away, saying, "lupus, lupus, lupus...lupus, lupus, lupus", varying her intonation and delivery each time. Guess it's never too early to learn about lupus, or to practice saying it with enthusiasm.

Have a great weekend!

Wednesday, February 9, 2011

The definition of "chronic"

When I was diagnosed with lupus, there were a lot of things I didn't grasp during those first few doctor appointments - the possible treatments, the tests that would be needed, and the long-term plan of attack, just to name a few. I'm afraid another thing I didn't get was the concept of the word "chronic".

Of course, I knew what the definition of "chronic" was - but I didn't understand what that really meant, and I certainly didn't understand how it applied to me and my life as a driven, successful, motivated 26-year-old. I didn't get that I was going to have to contend with lupus for the rest of my life. I even wrote in my journal during that first month after diagnosis, "I can't wait until this is over so that my life can get back to normal." Well - that's not really the nature of a chronic illness, now, is it?

So what, in particular, didn't I understand about the word "chronic"? Here are just a few things that took several years to sink in:

1) Managing my medications would take constant re-evaluation: The words "trial and error" should be part of the lupus sales pitch, in my opinion. I can't believe how many different medications I've tried over the course of 10 years. Whether it was ineffectiveness, an allergic reaction, or intolerable side-effect, you name it, I've had to switch drugs because of it. And often times, one drug would work wonders...but only for a short period of time. And then I'd have to switch. Or a drug would work, but not in conjunction with another one I needed, so then we'd do another switcheroo.

And I can just feel those lupites out there reading along, nodding their heads in agreement. It's never an easy fix when it comes to lupus and our drug cocktail of choice...but knowing that is half the battle. Today, I'm prepared for the possibility of switching - and I'm the first to call attention to that ineffectiveness, reaction, or adverse side-effect. Because I've learned - the sooner we switch, the sooner we can try something new that just might work!

2) Manifestations of the disease would continue to change over the course of time: This was another big one for me. I had in my head that, after that first flare, the only things that would be affected by lupus were my lungs, joints, glands, and throat. So much for that pipe dream! As my disease evolved, so did my symptoms. Yes, it's true that when you flare, you tend to get the same symptoms...but there can always be a new one added to the pot. And during those first 4 years or so - there's was a new addition every few weeks, it seemed. At some point or another, I added rashes, sores, hair loss, anemia and other blood disorders, heart trouble, kidney trouble, pancreatitis, angioedema, food allergies, and a whole host of other issues that took me by surprise. You read my book, and you'll have an inkling of the breadth of the disease and its symptoms. I just wish I'd known first!

*Note: Dr. Wallace's "The Lupus Book" is extremely helpful in outlining all of the possible symptoms, side-effects, and complications of the disease. I found it to be a fabulous reference as new symptoms popped up.

3) Lupus would affect every aspect of my life for the foreseeable future: No getting around this one, is there? It doesn't seem like there are many chronic illnesses that are as thorough as lupus. The physical and emotional, lifestyle at home and at work, inner turmoil and outward appearance - the disease leaves no stone unturned. And yet, if I'd known that adjustments were going to be necessary, and if I'd had a blueprint for how I could make them, maybe those feelings of vulnerability and hopelessness wouldn't have been so profound. Nonetheless - now that I know - it makes the job of pro-actively making those accommodations that much easier.

Well...most of them, anyway.

***
Today, I'm able to embrace these issues, and manage them almost without a second thought. I know what to expect, and I have an idea of how to deal with them. Just one more reason why I wrote my book. So others wouldn't be in the dark as long as I was!

Monday, February 7, 2011

The benefits of choosing well

Simply put, Saturday was the perfect day. I made a ton of healthy choices right in a row, laying the groundwork for a positively perfect day and an all-around outstanding weekend.

What decisions did I make that made for such a great day? Try these on for size:

1) On Friday night, Johnny and I only watched 30 minutes of a movie, opting to turn it off early in order to get a good night's sleep. On Saturday morning, I woke up rested and ready for the lupus workshop where I was giving a brief presentation. My strategy worked like a charm.

2) Because I was rested, I got up at the first sound of the alarm, rather than snoozing it a couple of times...giving me plenty of time to get ready. I love not rushing!

3) I'd asked my dad (who was visiting) if he could drive me to the workshop which was almost 2 hours away. It was the best move of the day - we got to catch up the whole drive down, I could relax and focus on prepping for my presentation, and I didn't have to worry about following directions to a place I'd never been. It was ideal!

4) I took a nap on the ride home, because my dad was driving. Seriously - it was the best! (If he hadn't been driving, I definitely would have had to pull over to find a spot to rest before making the drive back home. He saved me so much time and hassle.

5) And because I was rested, when I got home, I was able to visit with both of my girls, rather than rush off to nap. What's more, I was able to read Deirdre a story before her nap - which I rarely do anymore because her nap time is usually my nap time, too.

5) I was able to take a second nap of the day, because both girls were sleeping. (Be still, my heart!)

6) Johnny offered to go to the store while we slept...and I let him!

What a day! It was perfect in every way. From start to finish, I made choices that allowed me to do what I wanted to do, when I wanted to do it. Wow. The benefits of living well just keep on coming...

Friday, February 4, 2011

Declaration #3: Rejiggering the way you think about "Z"

Can you believe we've made it through the week? Our "X's" have been declared, our "Y's" have been stated - and we're still here to talk about it! Not too shabby, guys. I'm proud of you. And just to keep you motivated - let me report my weekly performance:

1) This post was finished before 10 pm last night.
2) I downed my second smoothie of the week on Thursday morning.
3) And since the day of my french fry declaration, I haven't had as much as a grain of salt from a fried potato.

I may, however, have bitten off more than I can chew (literally) in giving up french fries. Considering that I still have my "Z" to consider, I think it's advisable to focus on my blogging and smoothie goals first...rather than trying to rid the fries from my diet at the same time. It's just too much to work on at the same time. But never you worry - once I have my basic "X, Y and Z's" under my belt, and they've become a part of my routine - I'll turn my attention to the fry guys. I promise.

But for now, it's time to turn our sights to the "Z''s" in our life, and work on rejiggering the way we think about them. I'm talking about the misconceptions or misunderstandings we have about our life (with or without lupus) that cause us unnecessary stress or distress. Things that, based upon our stubborn, driven personalities, our perfectionists ways, or our unwillingness to rest when we need to, cause us to do more than we should, risking our health and wellness along the way. So to the "Z's" in our life, I say, "Good riddance..."

Here's my "Z" for the week, although I can assure you it was tough to choose just one:

From this day forward, when I receive an email that requires more than a quick, three or four-line response, I vow to try and send an interim email within 3 days that acknowledges that I've received the message and that I'll do my best to answer the email within 1 week.

Wow. That is really, really, really tough for me to do - to openly admit that I cannot tackle something the moment it falls on my plate, and to then give myself a window of time to get to it...allowing it to just sit there...in my in-box...waiting to be answered. (Eek! Gasp! Ugh!)


But I'm willing to change the way I think about my email because it's more realistic, and it will keep me from worrying about my in box when I should be doing more important things, like napping.


Here's how this kind of thing usually goes: On a weekly basis, I receive more than a half a dozen emails from wonderful people around the world who have read my blog, my book, or both. These emails are the highlight of my day - I love connecting with people, who, just like me, are constantly striving to improve their life with lupus. Their emails are chock full of questions, comments, inquiries, or all of the above...and a quick response just won't do.

So I hold off on starting a response, because I want to give it the proper time and thought it deserves. Of course, finding time during the day to respond is tough - I may get 2 minutes here and 2 minutes there, but it's not enough time to complete my thoughts. By the time things settle down in my household, it's 10pm...but we all know what happens to me after 10pm. So I'm not able to respond immediately...and this happens day, after day, after day.

But here's my real hang up: I hold off on sending a quick note that says, "Hey - I got your email. I'll get back to you...", because I keep convincing myself that I really WILL get to it, always thinking that it will be sooner than it is. I don't want to admit that I need more time, or that I can't get to something right away, because in my mind, it's almost like admitting failure. I want to do everything "now", and struggle to admit that with two girls, an afternoon nap, and a good night's sleep to fit into my day, something has to give. I know it does...I just don't want to admit it.

So sending an interim email is my full admission that I'm human, that I can't do it all, and that that's okay.

It is, right?

Wednesday, February 2, 2011

Declaration #2: Taking up "Y"

First of all - how's project "X" going? From my end, things are going well. Based upon the fact that this post wasn't written, edited, or proofed after 10pm last night, I guess I'm doing okay. I'll be sure to keep you posted!


Now it's time to move on to our "Y" - that is, choosing something to take up that will improve or increase our chances of living well, despite our disease. Once again, this could be anything - a food, an activity, or a behavior. Whatever it is, just be prepared to stick with it. After all, that's what this week of public declaration (even if it's under your breath) is all about. I'm willing to put myself out there - why don't you join me?


So here's my "Y" - Declaration Numero Dos - Taking up "Y":


I hereby swear to reincorporate into my diet at least two fruit smoothies a week. (I used to have them daily, but I burned out on berries after about a year. Now, it's time to get back at it.) I'm pleased to say that I'm off on the right foot with this one - last week, I chalked up two smoothies, and this week, I already have one down...so just one more to go. Smoothies are such a refreshing treat - and such a good alternative to the pancakes/toast/bagel I would normally have in addition to my cereal. Now I just need to add frozen mixed fruit to my Peapod orders...


And since things are going so well in the "X, Y, Z" category this week, I'm tempted to give up another "X", per Monday's post. Why not? How tough can two fruit smoothies and a 10pm curfew be?


So here's an extra "X" - In addition to ADDING smoothies into my diet, I'm going to SUBTRACT french fries from my diet. Ouch. That hurt to actually type out. But we'll give it a try. It's just my entire bleedership that will be keeping tabs on me...