Friday, March 30, 2012

Lupus pregnancies - the concerns spelled out in black and white

While this article doesn't reveal anything groundbreaking, it does touch on a subject that is worthy of reflection. The article, published on Medical News Today,com, talks about the effects that diseases like lupus and rheumatoid arthritis have on a woman's plans for a family. It seems that new research has found that more than half of woman with RA or SLE have fewer children than desired. While factors that influence the smaller family size include infertility and miscarriage, I was most intrigued by the mention of patient choice as a factor...because there's so much to weigh when considering a lupus pregnancy.

While you can read about my two fabulous high-risk pregnancies in blog posts past, and the ease with which Deirdre and Bernadette came into this world, the ideas of getting pregnant, staying pregnant, and caring for my kids post-partum weren't quite so easy. There was a ton of planning involved, precautions were taken, risks were mitigated, and many prayers were said. My two little ladies are the biggest blessings in my life (with Johnny being a very, very close 1.5), but the jury is still out on whether I'm going to "go for it" a third time. I have a lot to consider, and a lot at stake, as those gals need a mom who is as healthy and happy as possible. So I need to make decisions that will give me the best chance of making that happen. 

What do I consider? Things that are touched on in the article...which remind me that I'm not crazy to carefully weigh the pros and cons. As quoted in the article: 

 "Our study highlights important reproductive-health concerns for women with RA and lupus," said Dr. Clowse. Study findings reported that concerns about inability to care for their children, adverse effects from medications taken during pregnancy, and genetic transmission of their disease to offspring lead to fewer pregnancies in women with RA and SLE.

These are things I consider daily - and while I always pictured myself with three little kiddos - sometimes you have to stop while you're ahead, and you have to follow where life leads you. 

Of course, I don't want to act out of fear, either. I wouldn't have these two gals in the first place if I had let fear of an unsuccessful lupus pregnancy paralyze my decisions to get pregnant before. 

Decisions, decisions. Whichever way I go, with Johnny's 100% declared support, and those two adorable faces staring at me each day, I think I've already come out on top. 

Wednesday, March 28, 2012

Want to pick out your Pillbag in person? Save the date - 4/13/2012!

Hope to see you at this upcoming spring fling. I'll be there, with books and pillbags in stock. And look - the fabulous organizers of the event even made time for my nap. Three cheers for a mid-afternoon break!

WHAT: Spring Marketplace - Shopping Extravaganza
WHEN: Friday, April 13th, 9-2pm, 4-7pm
WHERE: St. Aidan's Day School, 8531 Riverside Rd, Alexandria, VA  22308

Want me to put aside a bag for you? On Monday, I'll post pictures of each of the pillbags I'll have in stock by the 13th. If you see one you like, let me know. I'll put your name on it and you can pick it up then!

Monday, March 26, 2012

Trading up skill sets, thanks to lupus.

For those of you on LinkedIn, I'm sure you've noticed the new Skills and Expertise section available on every profile. It was added about a year ago, but it seemed to take users a little while to start updating their profiles. I noticed a big rush of profile changes about 6 months ago, and now it seems that everyone's added a handful of assets or skills to their account.

As I perused the list of skills to potentially add to my own profile, I found myself thinking about how different 
my strengths are today, compared to 11 years ago, before lupus. Speaking not so much in regard to professional skills, here are a few things I thought would always describe me and my work ethic: 

*Works well under pressure
*Willing to finish the job, no matter how much time is required
*Steadfast and indomitable
*Demands perfection

These are things that came naturally to me - they were just part of who I was. But since lupus came to town, "who I am" has evolved. Sure, in some respects, I'm the same person - still striving for perfection, and attempting to remain unflappable in times of stress. But there are some changes that are unmistakable - I can no longer work like a dog, and I often have to settle for less than perfect, because I've run out of time, energy, or both. But for all of the skills and/or strengths that have gone by the wayside, here are a few of the things that I've been able to add to the list. While these don't come easily for me, since living with lupus, they've become a much more natural part of my personality: 


Of course, other things have contributed to the changes, but I'm proud to say that my chronic illness has brought out a calmer, more understanding side of my persona. Not saying that side is always front and center...but it's been a nice change. A change with which I'm perfectly content. 

Friday, March 23, 2012

Good decisions can be habit forming

Remember when I referenced Deirdre's nap time tantrums a few posts back, and the fact that we had successfully gotten over the tantrum phase? Good news is that we are still in the clear...she's still napping like a champ. And I have to say - the lack of resistance with which she's going to bed makes it seem like she doesn't even know HOW to throw a tantrum. It's as if that modus operandi never existed for her.

I'm thrilled that good nap time etiquette has become a habit for her. I'm sure given a vacation, illness, or a whole host of other reasons, she might have a setback. But for now, I'm enjoying her compliance.

And it reminds me how much longer it took me to accept my own nap time. Back in 2004, when I started integrating a daily nap into my routine, I wasn't happy about it. I knew I needed to rest - that terrible lupus fatigue was just too much to combat without it - but it took all the strength I had to haul my body upstairs and get into bed. I fought it - physically and emotionally. All I felt as I trudged up to bed (besides feeling dead tired) was that no other 30 year old had to take a nap in the middle of the day. Nobody else I knew had to miss out on the most productive part of the day. And no one else had family and friends breathing down her neck about taking a silly old nap. Naps were for babies...and, as it turns out, lupus patients who are attempting to keep their lupus fatigue at bay.

And I wish I could say it took me as short a time to give in to nap time as Deirdre. But it didn't. It took months, if not a year, before I began to go to bed gracefully. I figure Deirdre only had 3 years of obstinance to fight. I had 30!

That said, for the past several years, I've become a napping pro. I know how and when to schedule my nap around a day's events, I can tell how long of a nap I'll take on any given day (it's always between an hour and a half to 2 hours, but on the days when I predict it will be more or less, it usually is!), and I can rattle off the list of benefits to anyone who will listen.

And yes, as of today - I look forward to my nap. I have come to appreciate everything it stands for and everything that it enables me to do. I never thought I'd say this, but my nap has become a habit, and a good one at that!

Wednesday, March 21, 2012

The ultimate PILLBAG

Okay - so I'm still easing back into the land of the living, but I thought I'd at least post a little something to keep you coming back. I'll be back on Friday for sure...but in the meantime, here's a tote bag that we saw in Paris this past fall. It wasn't the inspiration for my line of Pillbags, but it could have been!

And here are a couple of product shots of my pillbags from my recent photo shoot...putting me just one step closer to launching My pillbags ARE coming - remember, April 1st (or thereabouts) is the goal!

SG out!

With a pillbox hat, no less!

Monday, March 19, 2012

Taking a pass on today

Sorry to report that I have to pass on blogging today. I caught a terrible flu bug this weekend (of the stomach variety), and I'm still feeling pretty crummy. My hope is to return on Wednesday, but one baby step at a time. This bug is a real whopper!

Until the next post...

Friday, March 16, 2012

Conversations at the spa - making sure the word "lupus" comes up

While I don't get to the spa very often, I find that I feel right at home once I'm there. The soothing music, the soaps and lotions, even the robes and slippers make for a very, very fun experience. But every time I go to the spa, I usually end up giving a mini Lupus 101 tutorial...simply because the customary health form I fill out undoubtedly has way too many check marks to let slide.

Sure, I could fib and say that I've never experienced arthritis, heart trouble, breathing issues, or any of the other issues that I have to mark "yes" to on the spa intake form...but that wouldn't be prudent. It's important to clue in the spa therapists - giving them a quick glimpse as to who they'll be working on next. And up until now, I've accurately marked up my sheet with more than the average amount of "X's", prepared myself to be pulled aside to explain what lupus is, how it affects me, and why, oh why a wonderful relaxing massage shouldn't be a problem. At least, that's what I usually do.

But for some reason, during my spa treatment this past weekend, I didn't mention a thing - primarily, I suppose, because they didn't ask. I filled out no form, and no one asked for my health history, so I kind of just forgot about it. It was one of those, "I wonder if I should mention anything about lupus?", and then before I had a moment to mull over my choices, the lights were dimmed, the music went on, and I was in relaxation mode. So I didn't say anything...and after the fact, I wish I had.

Don't get me wrong - the massage was great. The masseuse was responsive and accommodating...and I experienced very little to no pain after the massage. But during the massage - I found myself thinking that I had I mentioned my sensitive hips and knees, or my propensity to swell and bruise easily, or that I have traces of arthritis everywhere, I think it might have been a little more enjoyable. Because without that information, there's was no reason for the masseuse to magically know to go light around my joints, or easy on my skinny, bony fingers, or use a soft touch on my back. I assumed my health history didn't really matter - and that's where I thought wrong.

I assumed that in treatments past, the spa therapists asked the questions about my health form just because they had to...not because it made a difference in how they performed the treatment. But now I know that it makes a big difference. The therapists I've had before did listen to my story - making small changes in the way they performed the treatment, taking into consideration my sensitivities, tender areas, or trouble spots.  The reason I didn't perceive it as a big deal is because they didn't make it a big deal - their professionalism shined through.

But now I know - and I won't make the same mistake again. Best way to prevent it from happening again is to have treatments more often so I won't forget. Oh, the sacrifice!

Wednesday, March 14, 2012

Laughable, bearable lupus symptoms? For real?

After a long weekend away with my grown-up girlfriends, I'm refreshed, renewed, and ready to tackle the world! It's amazing how great it feels to just break away for a couple of nights. My girlfriends and I had a great time - we talked (free of interruptions!), we dined, we spa'ed - with no sippy cups or diapers in sight. Of course, I was thrilled to see my girls on Sunday night after being away...but boy, did I enjoy my girls' weekend!

I'll tell you a little bit more about the weekend in an upcoming post, but I want to first tell you about the day before I left...which was last Thursday. Johnny was away for the evening, I was trying to get a million things done before I left, and the girls were in rare form. It was a beautiful day, so they'd been playing outside with the neighbor kids for hours. And as is often the case, the transition from playing outside to eating dinner inside was a tough one, so there was much kicking and screaming. (Okay, so no actual kicking OR screaming...but lots of tears.) But in the midst of Deirdre crying, complaining and being irrational about leaving her friends, and Bernie crying and whining in an attempt to imitate her sister, I found myself smiling. Because in less than 24 hours, it was all going to be over. I would be on a plane to a spa, and the crying and carrying on wouldn't be heard for miles.

I found it fascinating that all I needed to keep a chin up that night was the fact that there was a definitive end to the chaos. Simply knowing that the rigamarole wouldn't and couldn't go on forever made it completely bearable. In fact, it almost became laughable.

And that's one thing that doesn't come naturally with lupus - finite symptoms that you know will come to an end. And many times, they're not laughable, because they're not bearable.

I don't really have a good solution for this one, other than the fact that after 11 years with lupus, I can't think of a single instance where a lupus symptom hasn't at least subsided. Yes, some take longer than others to pass, and others don't ever go away completely, but they do get better, and they do become bearable. And believe it or not, they do become laughable. My swollen lips (from random angioedema), my inconvenient naps, my hair loss, my achy swollen digits, and even my recently acquired Raynaud's fingers...they've all become a source of laughter for me and my family at one time or another. And it's those light-hearted moments that have helped me muddle through the most frustrating of symptoms.

So here's to finding a few laughable moments in your life with lupus, just to make the time pass while you wait for those dog-gone symptoms to subside.

Monday, March 12, 2012

Official Nap Day declared...not just on Despite Lupus, but worldwide!

My dreams have come true - the idea of napping has gone global!

My husband forwarded me this article while I was, ahem, napping today, and I woke up and decided to post it immediately. What could be better than waking up from a 2 hour snooze to learn that today, the Monday after Daylight Savings, is "National Napping Day"?

Its creator, University of Boston professor William Anthony, chose today particularly because people often feel sluggish after losing an hour of sleep due to the time change. Here, here, I say.

And it's no news to me that naps have major benefits, many of which I've blogged about here and here. Increased productivity, alertness and decision making are definite side-effects - and it seems that a well-rested body is a slimmer body, as rest can aid in weight loss.

The article also cites a book on napping, "Take a Nap! Change Your Life" by Sara C. Mednick. Since fatigue is such a major symptom of lupus, and so many lupites have found success taking naps throughout the day to fight that fatigue, I think this might be a great read for lupites everywhere...let me know if you've read it. I'd love to hear your thoughts!

Enjoy the entire article here, and for goodness sake, get in a nap - be it today, tomorrow, or every day for the rest of the week! You'll love it!

Also note that Anthony and his wife Camille have written two books on napping and created The Napping Company, an organization devoted to showcasing the many health benefits of napping.

Seriously, somebody pinch me.

Friday, March 9, 2012

Plans or PIllbags? Does it really matter?

First, I want to thank those of you who emailed or commented about the renovation my family and I are about to undertake. I'd been hesitant to blog about such a non-lupus subject, but it seems that lupites like renovations...despite the fact that the stress, upheaval, and disarray caused by such an endeavor don't really mesh well with a chronic illness that can be flared by stress. But...that's the way we lupites roll, so let the renovation blogging go on!

That said, just a full four days after my first renovation posting, I have two things to report:

The first - I haven't been doing a very good job of sticking to my renovation "hours of operation". That is, reserving nap time as nap time, and reserving night time as sleep time. But...starting from day one to now, I've actually made improvement, probably because I knew that I was going to have to report back on how I've been doing!

The first day was rough - my 2pm naptime came and went, and I kept on searching for granite. Later that night, my 10pm bedtime came and went, and my eyes stay glued to I finally wised up after 11pm...but it wasn't without reluctance.

The second day, I did better, cutting myself off well before 3pm, and again before 11pm. On day three and four, I finished strong. Day four in fact, came and went, with no infringement on my sleep time at all. Wow - walking the walk takes some effort!

And the second - I've realized that proposed deadlines, as they relate to my renovation, my pillbags, my book, etc.,  can't/don't/shouldn't matter. April 1st is right around the corner, and two things are supposed to happen by then: A) my new manufacturer is supposed to have a slew of finished pillbags on my doorstep, such that I can launch my site and start bringing pillbags to homes across the country;  B) our architect's final schematic drawings are supposed to be delivered and in the hands of our bidding contractors.

Now - both of those things are actually scheduled to happen a week or two BEFORE April 1st. But I'm allowing extra time, because in the worlds of manufacturing and architecture, something always comes up. That said - as I was making dinner last night, I was thinking - come April 1st, which would I rather have - my pillbags in hand, or the schematics completed? I kept going back and forth between the two (as if my preference makes any difference to begin with), making a case for one, and then the other.

But then it dawned on me. It doesn't really matter. It shouldn't really matter. It can't really matter. April 1st can come and go - and even if neither the delivery of the bags nor the completion of the plans come to pass, life will go on. No one need lose any sleep over it, and I certainly can't get sick over it. (Not that I would have...but I'm just saying...)

If there's one lesson I've learned in the 11 years I've had lupus - it's that I have to manage my own expectations. Expectations of what I'm capable of doing amid my lupus limitations, expectations for how much emotional stress I can handle without infringing on my health, and most importantly, expectations for what I'm going to with a Plan B. Life with lupus is filled with "Plan B's" - and the better prepared I am to accept a sidestep here, or a change of plans there, the healthier and happier I will stay.

Here's to a great weekend - may it exceed your expectations!

Wednesday, March 7, 2012

Pillbags,Take 2.

This has been a week of highs and lows, as far as the pillbags go. First - the highs: my patent applications have been filed, so I'm free and clear to show the world pictures of Sara Gorman's Pillbags. Yippee! Up until now, my patent attorney had recommended that I keep photos of the bags off my site, just to protect myself until my apps are filed. (Turns out Daddy G knew what he was talking about!) But now, bring on the product shots!

Which leads me to my second victory, which was hiring and working with a fabulous photographer to do my professional product shots. She's been phenomenal! The placeholder shots I had on my to-be-launched site don't hold a candle to the shots she's taken. Once the site is up and running, you'll be able to see her handiwork first hand.

But now for the low - the site is NOT up and running...because I broke up with my manufacturer. While it was hard to say goodbye to the guys who got me started in the bag business, it was definitely time to move on. I wish I knew where we went wrong. but alas, I think it may be the nature of manufacturing. When you're dealing with quality, price, and delivery - it's a tall order to make all three of those happen time, after time, after time.

As far as product development and design go, however - they are the tops. They helped me get the product to the place it is today, and for that, I will be forever grateful. But clearly, I wasn't the right customer for them, and they weren't the right production team for me. We just couldn't make our expectations clear enough...and so it was time to part ways.

The good news is that I had another couple of manufacturers in my back pocket. My goal is to keep the work domestic (go Made in the USA!), so that narrowed the field a bit. But my reluctance to move on from this first manufacturer reminds me of the difficulty we all have with change - with or without lupus. For me, it was particularly reminiscent of the difficulty I had making the career changes to accommodate my declining health due to lupus years ago.

Here's what I was up against - both times:

1) Comfort - Oh, how easy it is to stay with what you know! When it came to this manufacturer - I'd been working with them since August...talking as often as three times a week. That's not six months of rapport-building you just want to walk away from. What's more, we'd made some real progress working together. However, it wasn't as productive as it needed to be, hence the fact that I currently have no product to show for it. But walking away from a situation in which you're comfortable, where you don't have to try so hard, and where you have a pretty good idea what to expect - that's hard to do. Same with the 10 years I'd logged in television production: I was comfortable, I didn't have to work hard to make my job happen, and I knew what to expect. But was I as productive as I could have been? Was I as healthy as I could have been?  Was the situation working anymore? Not really, to all three.

So the question has to be: is the comfortable situation in which you find yourself working? Is it as painful as it is productive? And is there a possibility that the pain actually outweighs the comfort?

2) Persistence - So if you've read my book, you know that I use derivations on the word "determined" more than two dozen times. I don't give up easily - and I approached this manufacturer relationship with the same level of determination. I wasn't just going to walk away because things weren't rosy and perfect. I knew some things took a little extra time, energy, and massaging. And because I was new to the world of manufacturing, I figured I couldn't let the bumps in the road deter me.  It was just like with lupus - I thought the harder I tried to muscle through the pain and ignore the toll the disease took on my body, the less effect they'd have. Well - not true. In fact, the pain and the toll just got worse. And in the end, I think that's what happened with the manufacturer. I kept overlooking the issues, but the damage toll just got worse.

3) Unknown - This one was a real problem for me. I mean - as a newbie to manufacturing, how could I start over with someone new? How could I know that I wouldn't just run into the same problems? How would I know if it was going to be better? Well - just like anything, you don't know until you try.

I had no idea what it would be like once I let go of my career for good. I was going to be 32 years old, with no kids (because I couldn't have any at the time), no job, and no plan for a job. What in the world was I walking into? And yet, almost 6 years later, I now know that the unknown isn't half bad. And I tell you this - the possibility is what will get you through. The possibility that I might be able to be well...have kids...write a book. Those were pretty darn compelling reasons...just like having a quality, cost-effective product delivered on time as expected was a compelling enough reason to move on.

So onward and upward. I've learned and will continue to pillbag at a time.

Monday, March 5, 2012

New baby on the house!

My "babies" in chronological order:

First came the pugs - Henry in 1999, then Darwin in 2002. Next came baby Deirdre in 2008, and then my book in 2009. Baby Bernadette followed soon after in 2010, and most recently, the concept of the Pillbags was born in 2011. 

And now, it's time to add another to the the form of a whole-house renovation. 

That's right - after 6 1/2 years of living in our un-updated 1965 home, it's time to make some changes. We've hired an architect, interviewed a slew of general contractors, and are embarking upon a project that may upset my life more than any of my previous babies combined. 

Nonetheless - I am thrilled to begin the process. And a process, it is. Because it's such a big endeavor, I need to make a few declarations: 

One - I promise not to turn this into a renovation blog. Oh, you'll hear plenty about the process, but only as it relates to lupus. Okay - who am I kidding? You're going to get all of the gory details...but just because it will keep me honest about how much time I'm spending on sites like!

Two - I promise not to let the stress of this renovation interfere with my current state of wellness. That is - "house stuff" (i.e. the desperate search to find the perfect kitchen counter top) must be done between the hours of 9am and 1pm, or again from 4pm to 9pm. Or maybe 9:30pm. Okay, 10pm at the latest. 

Three - I promise that the hours between 1 and 4pm will remain sacred, and will only be used for pre-nap or actual nap time. No surfing, no meetings with architects, contractors, or kitchen designers. No dashing off to a tile store or appliance center. Nap time shall remain nap time.

Four - I promise not to leave the cleaning out or packing up of all to-be renovated rooms and their contents until the last moment. I know it needs to be done by or about June 1st. I shall not wait until May 15th.  

So - there you have it. My proclamations for staying sane while we undergo this whole-house renovation. Let the process begin - I'm armed and ready to stay well! 

And just to whet your's an example of a kitchen look that I love!!!

Friday, March 2, 2012

Lupus and Cardiac Disease Part II

As mentioned in my previous post about heart disease and lupus, I decided to do a little research to find out why lupus patients are at such an increased risk of cardiac disease. I knew a little bit, probably just enough to be dangerous, but I decided to find out more. 

The good news is that the answers I was looking for were readily available online, which was oh-so-convenient for this research-averse blogger. However, in order to obtain what I considered a satisfactory answer, I had to pull from about five or six different sources. And the fact that finding those answers took some digging explained a lot. 

It explained why I was a little bit muddy on the subject. After 11 years with lupus, it's not that I didn't know anything about lupus and the heart. It was just that, up until now, most of the information I came across online, in books, or in pamphlets stressed the traditional risk factors as the primary concerns for people with lupus. Things like keeping to a healthy weight, watching your cholesterol and blood pressure, and staying active were mentioned in almost every "lupus and the heart" article I'd ever come across. And of course that advice is sound. But what it mistakenly led me to conclude was this: since, as lupus patients, our risk to those traditional factors are increased (due to debilitating pain that keep us from being active, or steroid therapy that causes weight gain), if I wasn't showing signs of those traditional risk factors, then I was pretty much in the clear. 

Well - I should have known better. After all, the primary concern of my pulmonologist during the first 6 months after I was diagnosed was that the inflammation and fluid in my lungs was migrating over to my heart. Good news is that the fluid never got there...and because it didn't, I kind of dismissed the heart concerns. 

But I shall dismiss no longer. Here are the reasons why lupus patients are more prone to cardiac disease:

*ANTI-BODIES: Many lupus patients have antibodies that attack proteins that help regulate blood vessels. The presence of those guys can increase the risk of heart attack, stroke, and heart disease. 

*INFLAMMATION: Chronic inflammation, when found around the heart, in the muscle tissue, or in the inner lining of the heart, can interfere with the heart’s ability to function properly. Interestingly, inflammation in the muscle tissue can also be caused by infection, which as lupus patients we are prone to, particularly when on immunosuppressive drugs. 

*MEDICINE: Corticosteroids, with prolonged use, can be real trouble makers. They can cause increased risk for diabetes, elevated cholesterol, and hypertension - all of which can contribute to heart disease.

*KIDNEYS: Hypertension (which leads to heart disease) can also be caused by kidney disease, which many of us have. Dinged again! 

*CHOLESTEROL- We usually think of HDL as the good guys, and LDL as the bad guys. But it turns out that abnormal, pro-inflammatory HDL (piHDL) can exist in people with lupus and other autoimmune diseases, likely contributing to atherosclerosis. In fact, the presence of piHDL may serve as a biomarker to identify women with lupus who have the highest risk of cardiovascular disease so more intense preventive steps can be initiated. (That is GOOD news!)

The links below can give you details on each of the issues outlined above, and many thanks to the sources listed. Note that by no means is the information provided meant to say that as lupus patients, we're doomed. That's hardly the case! 

It's just important to know that if there are several factors inherent to lupus that we cannot control, it's that much more important to do something about the factors that we CAN control. Nutrition, exercise, healthy lifestyle, low stress (to control disease activity AND blood pressure) all adds up, ideally to a healthy heart!


Lupus Foundation - Heart Disease is a Major Complication of Lupus
Pittsburgh Magazine - Dr. Susan Manzi: Unmasking the Great Impersonator
Lupus Foundation - Chat Transcript with Dr. Susan Manzi
Alliance for Lupus Research - Cardiovascular Disease and Lupus
Lupus Foundation - The Cardiopulmonary System 
Rx PG News - Pro-inflammatory HDL biomarker for Lupus Atherosclerosis