Monday, May 31, 2010

My own little mini-me - oh, the responsibility!

We've recently entered a wonderful new phase with Deirdre. The era of story telling!

As she's going down for her afternoon nap, and just before she goes down for the night, Miss Deirdre doesn't want to read a book. She doesn't want to hear a song. She wants to be told a story. A good, old-fashioned, homegrown, made-up story that either her Dad or I come up with about one of her favorite relatives or animals - alive or past, real or stuffed, respectively. The stories don't last for more than a minute or two - mine having a beginning, middle and an end, while Johnny's are a bit more "free-flowing" (what a treat listening to each other's stories through the monitor!) - but Deirdre absolutely loves them. And her memory! I can't believe how much she remembers from one night to the next. We've told stories about just about everyone - past, present, and future - and she just can't get enough of it.

But here's the cutest thing of all (as any parent will tell you, I'm sure) - almost every night after we put her down, we turn on the monitor, and you can hear her telling her own whopper of a story - perhaps to the stuffed animals in her bed, or maybe to herself - but it couldn't be cuter. She goes on and on and on, in her perfect little 1 and a half year old blabber. And it is adorable.

So this had made me realize just how much she mimics us - particularly me - in just about every aspect. (If I had any doubt about what I sound like when I'm talking on the phone, Deirdre has cleared up the mystery. I just have to listen to her as she's pretending to talk on the phone - and her "Yeahs", "Nopes", "Uh-huhs" and "Okays" are me to a "T". She does a perfect imitation, and even has my intonation down!) She watches, listens, and learns...and then repeats. It's the sweetest, most endearing thing - and I realize what a responsibility we have to be fine, upstanding parents - not just in what we say and do, but in the way we treat one another, and ourselves.

So when it comes to the way I take care of myself, I realize I now have an audience. As she grows older, she's going to clue in on when I'm feeling crummy, and how I choose to deal with it, or when I push myself instead of choosing to stop and relax. Would I ever want her to think that her health and well-being should take a back seat? Would I ever want her to push herself so hard that she ignores the needs of her body? So she runs herself into the ground? So that she makes herself sick? Of course not!

And I want to lead by example, not only for Deirdre's sake, but for my family, friends, even babysitters or others with whom I come into contact. I want people to think of me as someone who takes care of herself - not in a selfish, narcissistic way, but in a responsible, self-aware manner that makes them realize it's okay to put their health and wellness first, too. That, in fact, I expect them to.

If you deny yourself the need for a little extra rest when you're feeling crummy, a day off when you need it, or fail to seek medical attention when necessary, what kind of signal are you sending?

Are you leading by example?

Are you taking care of yourself, so that others feel like they can (and should) do the same?

Are you teaching your kids to respect their bodies, your co-workers to give in when they need to, and encouraging friends and family to ask for and accept help when they need it?

Think about it - and if you have any doubts - ask your kids, or a loved one what they think. Believe you me, even at a year and a half, they'll give you an answer!

Friday, May 28, 2010

Lupus and living well - the cumulative effect

My feet, unfortunately, are not pretty. It's not that I have weird ankles, bad arches, or ugly toes (well, come to think of it, my toes aren't all that glamorous), but my feet seem to need more maintenance than the rest of my body put together. They're dry, cracked, and scaly - and I'm always reluctant to get a pedicure because my toe nails aren't very "pedicure friendly". (I've been known to buy Lamisil...need I say more?)


So despite the fact that I don't get out too often to have my feet professionally worked on, I have found that that good old remedy called lotion works pretty well. That's right - if I lotionize (as I call it) my feet every night for about two weeks - they're smooth as silk. And given the fact that my sister recently gave me a PedEgg to really help remove dry skin, my feet can be as good as new.

Now, that said, it's not "once a week" that works, or even "three days and then wait a month." My lotionizing requires a commitment - every night or else. It seems to be the cumulative effect that really works. And how long does it take each night? About 10 seconds. But how easy it is to convince myself that's too long, or that I don't have the time? Way to easy.


And though I sometimes struggle to add this 10-second task to my daily routine, I've come to the same conclusion about what it takes to live well with lupus. It's the cumulative effect of striving to live well - of allowing my efforts to build upon one another, day after day - that keeps me well.

I can't choose to slow down once a week, or to rest up only when I feel like it. I've had to readjust my thinking so that I instinctively think, "Live Well" rather than "Push Hard" every single day. And as I've mentioned before, learning not to push myself beyond my limits time and again has gotten easier. And what a treat it is not to have to try so hard anymore. I still have to work at it, as you know from my posts as recently as last week...but I love that it comes a bit more naturally now.

So here's to choosing each and every day to keep the momentum going, to let the cumulative effect of making good decisions lead me closer and closer to living well, despite lupus.

And yes - here's to that 10-second ritual that will bring my heels and toes to a whole a new level of softness. Bring on the lotion - I'm committed to my new routine.

At least for tonight.

Wednesday, May 26, 2010

Saving these lupus joints - one grocery bag at a time

You all know how I feel about having my groceries delivered. I've blogged about it, and the option to "Have your groceries delivered" has popped up on multiple polls, so you know I'm a proponent. So even though I didn't need one more ounce of convincing - I realized that with the heavy stuff I ordered last week and again this week (delivered this morning, thank you very much), I'm an official Peapod fanatic!

Here's a quick and dirty list of the "stuff" that is just too heavy for this lupite to carry. I mean - which of us with any tendency toward arthritis should be hauling around cases of water? Really!



Delivered most recently to my doorstep (actually, to my kitchen counter or laundry room, whichever applied):


*Two cases of water (24 bottles each)

*One (20-lb) bag of dog food

*Three gallons of milk

*One large bottle of liquid laundry detergent

*One pack of 12 rolls of paper towels and a pack of 12 rolls of toilet paper
(Granted, neither are heavy, but they make the list for awkwardness and would have qualified for an extra trip from the cart to my car, had I been shopping at the supermarket.)

*One bottle each of cranberry juice, orange juice, and V8 juice

*One (5-lb) bag of flour

*About 10 canned goods, including salsa, tomato sauce, pickles and hoisin sauce (remember...I'm pregnant!)

* One large bottle of dish washing detergent

And that's just the heavy stuff! (I won't bore you with my ENTIRE grocery list. That might be a little too revealing.)

But seriously - how much wear and tear did I save my joints on that one simple task? A ton! (And that's about how much my groceries weighed, too.) And thanks to my readers who commented on last week's post, agreeing that Peapod (and outsourcing other household duties) is the way to go.

Monday, May 24, 2010

New site to check out - Medpedia.com!

When you get the chance, check out Medpedia.com...it's a medical wikipedia of sorts. They've listed some great information on lupus - SLE, lupus nephritis, lupus and osteoporosis - and tons of information about treatment, therapies, and the diagnoses of the disease.

In addition, you have the ability to pose a question on the site, and have it answered by one of the many medical professionals who have joined Medpedia. Of course, this is no substitute for discussing these issues with your own doctor, but it might be a good place to start if you're in between visits or just have a general question.

They've just added a new section called "News and Analysis", which collects and organizes posts from bloggers on a range of subjects related to the medical field. I'm proud to say that Despite Lupus has a few mentions, and they recently invited DL to be part of their community. Not sure if the direct feed is up there as of this morning, but feel free to poke around and see what you can find. There's a ton of good stuff!

Friday, May 21, 2010

Full of lupus excuses

So I have to confess...I have had some joint pain recently. I've mentioned the occasional swollen digit I've experienced every few days over the last few weeks - caused, no doubt, by the rigorous travel schedule I've had lately. It's been one finger at a time, and not for more than a few hours every other morning or so. Of course, once my 5mg of prednisone kicks in, I've been fine, but no doubt about it, there's been some swelling.

Thankfully, my Spring book tour has come to a close (I do have one more local health fair to attend next week...but after that, I'm event-free!), and not a moment too soon. I've had the most spectacular time, and each speaking gig has been better than the last...but this pup is pooped!

Additionally, I've had some joint pain in my shoulder for the past few days. And of course, like any recovering lupus patient, I've come up with every excuse in the book (not my book, mind you...merely the proverbial book) for why the pain might be occurring. Here's my list of possible culprits - see if you can blow holes in these excuses as quickly as I did, once I took a step back and looked at them objectively:

Excuse #1 - I've been hauling a 15-lb retractable stand up banner thing around (and yes, my mug is right smack dab in the middle of it). Could that extra weight be causing the pain?

*Note that I didn't have any pain during or immediately after the time when I carried the banner. Just since I've been home.

Excuse #2 - Since I've been pregnant, I've taken to sleeping on my left side (the side where the shoulder pain is.) Couldn't it just be that I slept on it wrong?

*Note that I've been doing that for almost 5 months now. Curious that it just started now.

Excuse #3 - This week was busy in the shipping/receiving department at Gorman headquarters. For some reason, I had groceries, diapers, deck chair cushions, and a few other big items all delivered this week...and I've been tossing things up and down the stairs all week. Primarily, I've tossed because I'm trying to save myself a trip up and down the stairs, but could I have managed to throw out my shoulder in the process?

*Note to those keeping score - the shoulder that hurts is NOT my throwing arm. Ahem.

Excuse #4 - Allergies. I've had a little bit of a scratchy throat - so maybe my allergies are making my body a little more sensitive. (Boy, am I reaching, or what?!)

So - there you have it - 4 viable, honest contenders (in my convoluted lupus-denial mind) for why my shoulder joint might be hurting. But, let's look at the facts. The pain only happens in the morning, it gets better during the day (assuming that I've taken my medicine), and none of issues mentioned above have ever been the cause of joint pain in the past.

Hmmm. As my husband says to me, in these kind of situations, "You have lupus. The joint pain you're having? It's because of lupus."

Ugh! He's so right!!!

So it's time to get serious about my exertion levels. No joking around. No excuses. If you need me, I'll be on lupus lock down.

Wednesday, May 19, 2010

A little lupus help from my friends...

Just to close the circle on Monday's post – here’s how my errand-running turned out:

Remember that dry cleaning I needed to pick up, but had to forgo because of the sun, the time, and the heat? And remember the other errand I wasn’t able to fit in because I was up against my nap time? Well, guess who came to the rescue and accomplished both of them that same day? My husband, that’s who! He knew Dar, Deirdre and I had reluctantly skipped out on both errands earlier in the day (and that I had done so in order to be a responsible, healthy lupite), so he took it upon himself to run both errands. And I didn’t even ask him to do so! He just suddenly announced that he was going to run out…and pick up the dry cleaning, and run that errand. And you know what? I let him! Now is that a good husband/lupite relationship, or what?

It doesn’t always work that way. Sometimes he’s not able to pinch hit, and I’m not as willing to let him help. But in this case, it worked out perfectly.

Along these same lines, here are just a few more ways my family and friends have pitched in to help when I’ve needed it. And NONE of these were solicited – they just took it upon themselves to help. Need a loved one of yours to step in and help? Feel free to pass on this post…maybe it will give them some ideas, without you even asking!

1) Years ago, my garden was a mess. And I mean a mess. Weeds everywhere, flowers that needed to be dead-headed, and overgrown bushes that desperately needed to be pruned. And I just couldn’t do it. Not only was I exhausted day in and day out, my joints were out of control – arthritic, pained, and swollen. There was no way these fingers of mine were going to be tugging on any weed anytime soon. Plus, the hours of the day when the garden was out of the sun were limited – so had I been able to muster up the energy to tend to the garden, it would have been before 6am or after 8pm. Not ideal hours for this lupite! I mentioned the fact to my sister, maybe once, that I just hated coming home, driving into the driveway, and seeing that mess in the front yard. It was disheartening and disappointing – just another reminder of what lupus was preventing me from accomplishing. So what happened one weekend while we were away? My sister weeded, pruned, and dead-headed like crazy – I came home and the garden was immaculate. It looked like a professional landscaping company had come in with a staff of 20 to do the job. I cried when I saw it – touched beyond belief that she would take it upon herself to do what I couldn’t.

Of course, today, I’m fully capable of weeding my garden (although whether I do or not is another story!) But I never forget the kindness Katie extended that particular weekend. With every weed I pull now, I think about what she did.

2) Every summer, we head to the Jersey shore to rest, relax and have some fun in the surf with Johnny’s family. It’s a wonderful week – usually around the 4th of July – and now that Deirdre's with us, the shore is an absolute blast. That said, I still have to use my best lupite judgement when it comes to a full week at the beach: not too much time in the sun, not too many late nights, and plenty of napping. My in-laws are particularly wonderful about making sure all of those things can happen...but I still have to do my part to actually MAKE them happen.

Perfect example: the beach umbrella. My in-laws have purchased a bigger and better umbrella every summer since I can remember, particularly since I was diagnosed with lupus. They go above and beyond when it comes to making sure I can have my fun in the sun (or, more aptly, the shade). Of course, I have to make sure I a) actually sit under the umbrella, and b) remember to bring it down when I come to the beach. Most of the time, someone's been up early and set up chairs and the umbrella. But on the rare occasion that they haven't, all I have to do is grab the umbrella (which isn't that heavy) and bring it down. A couple of summers ago, before Deirdre, I headed down to the beach, intending to just stay an hour or so. I was lathered up with lotion, had my cover-up on, but didn't feel like hauling the umbrella down for just the hour. So I didn't. When I got down to the beach, I grabbed a chair and found my spot in the sand. Most of the family were off swimming, eating, etc., but my sister-in-law, Katie, was there. She was just getting ready to head back to the house for a drink, but would be back in just a minute. She commented on the fact that I didn't have the umbrella, and I said I was only staying down for an hour or so, so I would just tough it out. She asked if I was sure, and I said yes.

Of course, 10 minutes later, back she comes to the beach, drink in one hand, and you guessed it, umbrella in the other. She thought enough to bring it down, even when I was too stubborn to bring it myself. And guess how long I stayed out that day? Closer to two hours. I could have never made it without the umbrella - but I had a wonderful, symptom-free day in the end...thanks to Katie!

3) For one of my most recent book tours, I headed to Indiana to speak at state-wide Symposiums on back to back weekends. My parents still live in Indiana, so Deirdre and I enjoyed a week with PaPa and DeeDee in between speaking gigs. My best friend from high school, Jodie, lives an hour away from my parents, and we always try to get together once or twice while I'm home. While the week was filled with daily travel for one reason or another, we managed to drive up to meet Jodie
and her adorable little boy (her adorable little girl was in school) for lunch. We had a great visit (although only an hour or so), and we definitely wanted to fit in another trip. We talked about making something happen over the weekend, and we made plans to talk in a few days.

When the weekend arrived, I was pooped! I'd had an early morning start the day of the Symposium, was busy most of the morning and into the afternoon, and was pretty much wiped out from the week of traveling, speaking, selling, etc. When Jodie and I talked, she immediately offered to come to our house to see me, if I was even feeling up to visiting. I said that would be great - knowing full well that I would have NEVER been able to make another 2-hour round trip in the car. Had she not offered, I'm sure I would have felt compelled to make the trip up to her house, so thank goodness she read my mind! (Knowing her, she probably detected the exhaustion in my voice - she's that good!) Jodie and her daughter arranged to come down late on Sunday afternoon, kindly taking into consideration my long afternoon nap. We had a great time - and I know she saved me a few swollen fingers.

So even if I don't do that great of a job taking care of myself 100% of the time...my friends and family certainly take up the slack. Thanks, guys!

Monday, May 17, 2010

Choosing one for lupus

We all know about the choices involved with living with lupus - the prioritizing, the to-do lists slashed in half, the "cut back here in order to get back there" concept, but as I mentioned on Friday, I'm realizing that my motto of "choose well" could just as well be "choose one." Know what I mean?

The first chapter of my book is entitled "Choose Well" - because in the 9 and 1/2 years I've had lupus, I've realized that everyday, I have a choice to make. Am I going to do everything I can to manage my disease, to control the role it plays in my life - or am I going to egg her on, push the envelope, and allow her the chance to take center stage? For me, that's what it comes down to. Choose well or let lupus flare.

Sometimes I make really good choices across the board...I nap when I need to and for as long as I need to, I choose one errand over another, and I prioritize my evenings activities. Other times, I taunt the disease a little, but not enough for her to make a solid appearance. Still other times, well, I just get a little carried away. I lose sight of my limitations, allow my determined, perfectionist, driven personality to take over for just a bit, and find myself nursing a few joints back to health. Thankfully, because I've become accustomed to making those choices every single day, and because each day is a brand new day, I have the chance to start over each morning. So I never get too frustrated with myself...because there will always be another opportunity to choose well.

Now I don't know about you, but when I don't make the best, most sound choices for my health, it's because the waters have been muddied, and unfortunately, it's as I've knelt down and deliberately drudged up the mud myself! I convince myself that maybe I don't really know what my limitations are...that maybe this time will be different...that maybe I'll surprise myself by not getting too tired, achy, or bleary-eyed when I push myself. Truth is, I know EXACTLY what I can handle, it's just my mind that tries to play tricks. That's where this epiphany about choosing one seems to make things a little easier. Here's what I mean:

The other morning, I woke up around 7:30am...traditionally about 30-45 minutes before Deirdre wakes up. I was still tired, but I desperately wanted to send off an email first thing that morning...and I knew if I did it before she was up, it would happen. Otherwise, it might be 11am before I got back to my computer. So - I opted to turn on my computer, open up my email, compose the message, and hit send. Done. Mission accomplished.

But wait...I had messages in my in-box. Should I look at them now, or shut down my computer and potentially get another 30 minutes of sleep? Well - the waters were looking particularly muddy that morning, so I strolled through my in-box to see if anything needed tending to. Of course, I convinced myself that I would just take 2 minutes to do this...but 22 minutes later, I was still browsing and responding to the new messages. Ugh! I stopped what I was doing and shut down my email. I told myself to just stop while I was already behind...but it was too late. As soon as I abandoned my in box, I decided to check one quick thing online, just because it would be so much easier to do so before Deirdre was up. Eek! Duped again! Now here I was - 39 minutes after I'd sent the original email...when who do you suppose started making a little boo hoo from her crib. That's right - one Miss Deerdee Gorman. So I traded in an extra 30+ minutes of shut eye for what? I can't even really tell you! Sure I responded to a few non-urgent emails, but what of it? Was it really worth it? I don't think so. Bottom line - if I'd chosen to stop at "one" - at the ONE email I was going to send - I would have been able to get a little extra rest and been fresh and ready to go for the morning. It wasn't a major catastrophe by any means...but the score was set - and I was down a point.

Next choice I had came a few hours later, when Deirdre, Darwin and I set off for our morning walk. I had planned to walk to the dry cleaners, not more than 3/4 of a mile from our house, in order to pick up the dry cleaning that I really needed to get. It had been on my to-do list for several days, but I just hadn't had a chance to stop and pick it up. Here was a great opportunity to get some exercise AND cross off a to-do.

But here was my dilemma: the walk to and from the cleaners would take a good 45 minutes to an hour (primarily because Darwin doesn't understand that he need not christen every tree, bush, and cable box along our path), the path there and back is in full sun, and it was warming up quickly that day. Not ideal walking conditions for this lupite, a fair-skinned baby, and a fully furred pug dog, to say the least. What do I do? I REALLY wanted to get my dry cleaning...but I REALLY wanted to walk, too. I didn't have to choose between the two - but would it be a good idea if I did? You bet. So I chose to forgo the dry cleaning, and Dar, Deer and I took a nice leisurely stroll close to our house, in the shade - and enjoyed every minute of it. The tables were turning. The score was even.

Last true story of the day - upon returning from our walk, Deirdre and I hopped in the car and headed off to do a few errands. We were running a little late as we pulled out of the driveway - as I was pushing up against Deirdre's nap time at 1pm. (Okay- let's face it. That's MY nap time, too. And since I was up a little earlier than normal that morning, I needed to stick to the 1pm time frame.) So I looked at my list - with several errands staring me in the face. Two of them had cropped to the top of the list...both were equally important, and of course, both were in opposite directions. Ugh! These choices! But I kept a level head - kept my hands out of the mud, and chose to run only one of them. Deirdre and I returned home. ate lunch, and breezed into nap time right around 1pm. And you know? I was feeling particularly accomplished, regardless of how many items remained on my list that afternoon. I was in bed, feeling cool, calm and collected...knowing that that I had the upper hand now. Two points to me, thank you very much.

Friday, May 14, 2010

Reality check #538 - the speaking circuit

Based upon the customer reviews and feedback about my book, it seems that readers appreciate that fact that not only have I lived with lupus for over 9 years, I continue to live with it and deal with it every single day of my life. As I say in my book and have said in my blog, lupus isn't something you conquer...it's something you learn to manage on a daily basis so that you can live well, despite it.


Some days, it's easy...and I hardly give lupus a second thought. Other days - my disease gets a lot more air time. And although it's tough to swallow, on those days when lupus is ever present (either because of a nagging symptom, a medication snafu, or the accommodations that it requires), it reminds me that lupus and I are a work in progress. The reality of the situation is that a chronic illness deserves continued respect, attention, and a little allowance - so that we, the patient, get the respect, attention and allowance WE deserve. So did I have a little rejiggering to do last week as I traveled all over the state of Indiana, speaking and engaging in lupus activities? You bet!

I had to contend with a few swollen joints over the course of the week. Nothing big deal. And nothing that didn't subside within an hour of me taking my prescribed prednisone. But, boy, does it make me think long and hard about future speaking gigs, as my tummy continues to grow and my energy becomes more important to conserve.

I also did a lot of car traveling during the week - fitting in visits with many special people throughout the state. Family, friends, even other lupites who wanted to connect. And I loved every minute of it. But truth is, my joints didn't. Again - nothing to write home about (although I guess I AM writing about it, so scratch that), but at least nothing that lasted more than a morning. But it makes me realize that again, life with lupus is not a free-for-all. I have to gauge my activities, I have to prioritize my activities, I have to choose well day after day after day.

In my next post, I'll talk a little bit more about this concept of choosing well. I've been recently convinced that the title of the first chapter in my book could have been "Choose One" just as easily as it was named "Choose Well." Stay tuned for an explanation!

Wednesday, May 12, 2010

Helpful Hannah

Because asking for and accepting help is such a big part of our lives with lupus (so much so that the subject earned its own chapter in my book!), I thought a poll covering this very issue might be appropriate.

When you get the chance, cast your vote in the poll at the right. Which household duty would you love some help with? Cleaning the house? Keeping up the yard? Maybe it's running around town for errands, or taking the kids to every practice/rehearsal/play date they have.

Give it some thought, and then cast your vote.

Okay, now that that's done...think long and hard about what you've selected. Have you thought about options to get the help you need? Could you delegate that responsibility to someone else in the family, to a friend, another parent, or to even a service?

Forget about the fact that you're the only one that really knows the brand of salsa to buy, or that you're super picky about how your flowers are pruned. Instead, think of the hour or two you might save letting someone else do it for you, not to mention the exhaustion, fatigue, and joint pain that you'll save yourself.

Most importantly, don't just walk away from this poll thinking, "If only..." Think about how you might make it happen, like REALLY make it happen. Even if it's just one time, see if you can come up with a way to ask for and accept a helping hand.

And once you do, stop back by and let me know how it goes!

Monday, May 10, 2010

Earning my Mother's Day wings!

So another Mother's Day, under my belt! Boy, does it feel good to be a mom. And with #2 on the way, it's even more special to think just how far I've come from non-momhood.

Years ago, before Deirdre, it seemed that my parents were always here visiting during Mother's Day weekend. And every year, my dad would want to honor me as a "mom" - either encouraging me to stand during the Mom's blessing at Mass, or asking me to wear a corsage along with my sister (who WAS a mom) and my own mom. But I always refused. He was doing it out of love - maybe he knew how much I wanted to be a mom, or maybe he thought since I'd been pregnant, but miscarried, that I was technically a mom-to-be, or maybe he saw the loving way that I "mothered" Henry and Darwin and just thought I qualified. In any case, he always tried to encourage me to participate in the "mom" stuff - but I never would. I wanted to earn my wings as a mom...I knew that one day, down the road, I'd work my way into Momdom. And until then, I wanted to sit back, and let those who had earned the right to stand up in church, or wear a corsage do so.

And now that I've truly earned my way to being a mom- I'm so proud to be here. When I stood up in church yesterday, and when the attendants at brunch wished me a Happy Mother's Day, my eyes filled with tears. Because I worked so hard to earn that title. Not any harder than anyone else, of course. But those years with active lupus, on medication incompatible with pregnancy, and with doctor's orders not to get pregnant behind me...I KNOW I fought my way to where I am today.

I think back to those 5 years in between the time I wanted to get pregnant (but couldn't stay pregnant) and when I had Deirdre. What transpired? Probably some of the most important years of my life:

*I waited patiently as my body caught up on the rest and stresslessness it needed, allowing my lupus symptoms to slowly but surely fall to the wayside.

*I learned the real meaning of "stable". I used to believe that stability meant being able to walk from one end of the room to the other without crumpling into a heap on the floor (even though I wanted to), or striving to hold to a mediocre "6" on the pain scale (and being proud when it didn't reach a "10" ). But I was wrong. Stable means that my disease takes a back seat in my everyday life - that I don't have to contend with debilitating joint pain or swelling on a daily basis, and that I don't struggle to put one foot in front of the other. Most importantly, I don't even WORRY about the prospect of those things happening. I'm cognizant of what I need to do to keep those things at bay, but I'm able to live life the way it's meant to be - healthy and happy, full of hope and confidence that lupus isn't going to ruin today, or any day in the future.

*I watched as my fragile, weak stature grew into the strong, firm condition it needed to be in to have a successful, uneventful pregnancy. Don't get me wrong - I'm no Iron Woman. But compared to the skin and bones of yesteryear, when arthritis, constant pain, and swelling left my muscles and joints wilted and lifeless - I've at least got some meat on my bones. (Of course, at 17 weeks pregnant, I have a little more meat than I'd like...but that's okay. All for a good cause, right?)

Not only did my body mature during those five years, but so did my mind. Emotionally and mentally, I became more capable of adjusting to lupus, learning that it was about working with the disease rather than against it, and that whether motherhood was in my future or not, I was going to be a success. That peacefulness, that serenity was a feeling I'd been searching for all of my life. The belief that the blessing of children - whether it came naturally, via adoption, or through all of the nieces and nephews I would need to tend to - would come in due time, was all the knowledge I needed.

Of course, shortly after I reached the conclusions above, I was blessed with little Miss Deirdre. That's why her acknowledgement in my book says, "You were worth the wait." If you've met her, you KNOW she was worth every moment of every day of those 5 years. My patience and perseverance never seemed so meaningful. And I feel the same about Kit Kat (my current bump's name)...I'm ready. I'm stable. I'm strong. Mister or Miss Kit Kat is worth the wait, too.

And without a doubt, being able to celebrate Mother's Day - as a real mom, with real kids, and real responsibilities - was worth the wait, too.

Friday, May 7, 2010

Prepare ye the way of a lupus pregnancy

I had the pleasure of sitting on a panel with a few lupus professionals at this past weekend's symposium, one of whom was a rheumatologist. And I'll tell you - that's one way to get your questions answered...sit next to a doctor, on a stage, with a microphone in your hand. There was no way he was ignoring my questions! However, since I officially wasn't supposed to be the one asking the questions, rather, answering them, I only slipped in one or two...when it seemed fashionable to do so. But, oh, was my head swirling with queries!!


One of the questions posed by the group was about pregnancy, and the doc and I both fielded the question - agreeing that PREPAREDNESS was really the most important thing when it comes to a lupus pregnancy. Here's my interpretation of our collective responses:

1) Do your best to ensure that your disease is inactive: If you know anything about my story, you know that I had zippy luck trying to get pregnant and stay pregnant when my disease was active. There's a reason you need to be stable, strong, and healthy - that little life inside of you needs all the help it can get. My advice - be as healthy as possible for as long as possible...and then give it a go. I have one success story under my belt, and another one on the way. I couldn't agree with the doc more on this one!

2) Treat your pregnancy with great care: In my opinion, the best way to go into a lupus pregnancy is to treat it like a lupus pregnancy from day 1 - know the risks, make sure you and your doctor are clear on what needs to be monitored, when, and how often, and take the necessary precautions (medications, etc.) to make sure the pregnancy can be as successful as possible. My lupus support group ladies tell me that the best thing about my pregnancies is that I knew that I had lupus BEFORE I got pregnant...so that my doctors and I were prepared going into it. I've been treated as high-risk pregnancies for both babies thus far...and I wouldn't have it any other way. The perinatologists are my primary OB's - and I have the absolute best care you can imagine. Starting next week, I begin my 2-week sonograms, which will take place every other week until the end of my pregnancy. It's a lot of doctor's visits, I know - but who wouldn't want an extra few glances at their baby in utero? And because these guys see lupus patients frequently, I know they're on the lookout for things to, well, look out for during lupus pregnancies. This is a time when I'm so happy no one is throwing caution to the wind!

3) Be prepared for disease changes during and/or after the pregnancy: Again - if you know going into the pregnancy that your disease could become active, or that after giving birth, the drop in hormones, lack of sleep, added stress, and the sheer fact that you just went through something as traumatic and dramatic as giving birth could cause you to flare allows you to plan ahead. As much as I hate it, I really dial back my activity during pregnancy. I sleep more when I need it, I don't hesitate to ask for help, and I manage my outings and social events (including book signings) so that I don't tire myself out. I'm not saying I'm 100% successful with my attempts to slow down, but I sure do try. And just as I did when Deirdre was born - I'm planning on finding help everyday for at least 4 hours a day. Yes, it's expensive, and yes, it was a little weird having someone else care for Deirdre for half the day while I was home sleeping - but did I get sick? No. And that was my goal.

And I'll tell you - I didn't wait until she was born to gauge whether or not I'd need help. I didn't wait until I started to flare before I got help. I did my best to preempt a flare by scheduling the help in advance. And that's the name of the game. So if you're pregnant, get a plan of attack in line NOW...before you need it. Do your best to line up a friend or family member to come help, enlist that little neighbor girl down the street to come over for a few hours a week to help out, or think of at least three other ways you can ease your burden once the baby comes (groceries delivered, house cleaning, garden-tending.) It might take a little effort to call around now - but being prepared for lupus is like being 10 steps ahead. Ideally, that nasty little disease will never be able to catch up!

So in honor of lupus pregnancy preparedness week (or so declared by this DL blogger), I'm taking steps to do my part...by growing my hair long. I lost a ton of hair (like, a ton) after Deirdre was born, and I ended up having to get a new 'do in order to compensate for the hair loss. (My doc thinks it was just pregnancy, but my hairdresser says no way - the hair STILL hasn't grown back, although it's on its way. I'm sure it was a combination of lupus AND pregnancy...so I'm taking precautions now instead of being caught unprepared down the road!) During my first pregnancy, I was wearing my hair in a short bob...but this time, I'm growing it out. I've learned from hair loss episodes past that long hair gives you options. Even if I have to cut it off again - I'll at least be able to put it up for awhile to hide the thinning spots. And Deirdre seems to like when Mommy wears pigtails...she thinks it's cute!

What are YOU doing to prepare for your baby on the way? Share your ideas - I'd love to hear them!