Wednesday, June 27, 2012

A strategic lupus list equals a small, incremental list

We're moving right along with plans to renovate the house. Construction is set to get underway in October...planned for the beginning of the month, but I'm prepared that the date might shift, depending on how things shape up over the course of the next three months. Our architect couldn't be more accommodating, and he seems determined to keep us on schedule. Fingers crossed we keep chugging along.

Speaking of chugging along, back when I first posted about this whole-house renovation which will have us out of our home for 4-6 months,  I had grand plans to pack everything in the house that wasn't essential before Paola, our beloved au pair, left in the middle of May. Well - that didn't happen. In fact, I haven't packed a thing. I have cleaned out several closets, which will enable me to pack less, but it's time to get started. Like, now.

I've made the mistake of waiting to pack until the last week or two before a move - and I will not do that again. With or without lupus, that's not a good move.

So I sat down, again, and made a list of the closets/rooms/areas/stuff we need to pack. And I have to tell you, for one of the first times in my life, the list I made was all wrong. It was too general and broad - with things like, "pack Deirdre's closets" listed. It may not seem scary and overwhelming to you, but looking down at the list of all of these big, looming tasks, I just couldn't see where I was going to start. In fact, it made me not want to start at all. And that's not like me. I'm a doer. I'm a self-starter. I'm an organizer. Cleaning up, pitching and packing a closet is like a dream-come-true. But apparently, the idea of doing it 17 times in a row turned it into a nightmare.

So I need to go back and revise my list. This time around - I'm going to start small, with things like, "pack up extra linens", "box up Bernie's top two shelves", and "clean out underneath guest room sink". Things that are manageable, and jobs that can be accomplished within a few minutes. I know people like the FlyLady have perfected the art of cleaning and clearing out using this method, but as a gal who was born with an organizational notebook in her hand, I've never had to think long and hard about how to go about a task like this. I just do it. 

But now that my time is limited, my resources are thin, and my stamina is not what it used to be, I have to be strategic. I don't want packing even one box to put unnecessary strain on my mind or body. And the way to do that is to pack one shelf at a time, regardless of whether or not it fills a box, and then cross off "pack one shelf" off of my list.

Everyone wins - and the house gets packed. Albeit one shelf at a time.

This is the way many things are accomplished, including living well with lupus. While the big, sweeping changes you make are undoubtedly important (who can argue with the benefits of starting a drug that finally works?!), I think the real game-changers in our everyday lives with lupus are the small, incremental mental and physical accommodations we make to improve our lives with the disease. Simply adding a child-proof lock on my door the other day for my nap was, indeed, a game changer. Deirdre came to my door today during nap, turned the knob a couple times, found it impossible to open, and retreated back to her room. (Granted, she ended up paying a visit to her dad's office down the hall, but we're taking baby steps here...)

I won't bore you with all of the incremental changes I've made over the years, but I am going to take 30 seconds and, off the cuff, list a few of them. Little things that have made a big difference - at least to me. Some of these I still do, others were only temporary. Hopefully, this little list will inspire you to make even the smallest change to make things just a little bit easier:

Started rolling over to the side to get out of bed, rather than sitting straight up. (Instant back relief!!)

Started using Neat Squeeze toothpaste, saving myself an arthritic nightmare every morning and night.

Started keeping crackers in my bedside table so I could take my morning meds without getting out of bed.

Started using a pillfold. (I couldn't resist!)

Started wearing wireless underclothes, eliminating terrible pain from my back and side. (Okay - so I was
happy to see this one go. I waited patiently until my pain was gone...but I like a cute fitting brassiere as much as the next gal!)

Had "speed bumps" added to my wedding ring so that it could fit over my aching, swollen knuckles when necessary. (That isn't a pic of my wedding ring, by the way...but it's exactly what my speed bumps look like!)

Started taking my computer to meetings to type notes when I was working, rather than writing in a notebook - which was way too painful!

Okay - so I'll stop there. But I'm just warming up. Perhaps you guys can finish the list in the comments!


Monday, June 25, 2012

The latest lupus challenge: the Nappers vs. the Non-Nappers

So we are officially entering a new phase of child-rearing - as Deirdre is slowly but surely phasing out her afternoon nap.

It comes as no surprise, and I've been expecting it for months, but now that it's here, I'm a bit overwhelmed with how to deal with it. Or should I say, I was overwhelmed...until she spent the entire afternoon with Aunt Katie. The day she was away, Bernadette and I had the most glorious, uninterrupted 2 and 3 hour long naps ever, reminding me that whatever band-aid solution I was contemplating on using to get me through nap time, I need a long-term solution that is guaranteed to work. Starting now.

Up until now, I was just dealing with it. Not quietly, mind you, as I've mentioned to Johnny just about every other day for two weeks that we need a new solution for nap time, and Deirdre's well aware that her visits to Mommy's room during nap time have to stop. But before this weekend, I was just trying to ride out the phase, avoiding a change in routine because it would require, you guessed it, change. The trick was that 3-4 days a week she was a perfect angel - either sleeping soundly or reading quietly in her bed for the duration of my nap. The other 3-4 days a week, however, she struggled - coming in and out of my room for one reason or another, being disruptive in her room, or a combination of both. And up until now, I had just been mentally logging all of my "options" for when the situation became unbearable.

But after experiencing my nap of perfection this weekend, I realized the situation is unbearable, and something must be done. My nap is my most precious activity of the day, and for the last two weeks, I've been shoving it down to the bottom of the priority pile as if I really didn't need it. As if!


So this week, we will be exploring options to permanently ensure that my nap is no longer interrupted, or at least, as permanent as one can be when lupus, a 3 year old and a 1 year old are involved. We're looking at a whole host of things: switching my babysitter's hours, switching our napping/resting hours, getting an alarm clock so Deirdre knows when her "rest time" is up, adding a child safety lock on my door, going to "movie time", doing a point-reward system for good rest times, changing my napping venue, etc. etc.  Of course, all of you moms out there who have made it successfully to the other side are welcome to chime in. I would appreciate it!


And a big thanks to my sister for giving me a taste of the good life. Now that I remember what it's like to sleep perfectly soundly during my nap, I'm hooked. And as I've said many times before, once you get a taste of living well, you won't want to give it up. Stay tuned!

Friday, June 22, 2012

"Clinically quiescent" defined


Word of the Day | quiescent

quiescent •\kwī-ˈe-sənt, kwē-\• adjective

1. being quiet or still or inactive
2. marked by a state of tranquil repose
Johnny sent me this "Word of the Day" a few days back, knowing that this is the phrase I strive to hear at the end of each rheumatologist's appointment. This is and has been the status of my lupus activity: how sweet does "in a state of tranquil repose" sound? So rare to use words like that to describe a disease like lupus. Fingers crossed it will continue through the summer. Have a great weekend, and stay clear of too much sun!

Wednesday, June 20, 2012

Don't have an answer from your doctor? Call today!

I owe my doctor a phone call. Not my rheumatologist - but my opthamologist. And I'm embarrassed to say that I don't have a current issue to discuss. Rather, I need to follow up from some tests I had in, ahem, October.

That's right - I totally dropped the ball in finding out the results from those eye exams I had last fall. You can read about the details here, along with my issues with plaquenil in the past, but the bottom line is this - I need to pick up the phone and ask the doctor to fill me in on the results.

I'm assuming (and you know how that usually turns out) that the results are completely normal, that no flags were raised, and that's why no one has called me from either my opthamologist's office, nor from the specialized eye doctor who did the ERG.

But I shall assume no longer. Expect an update within the week regarding my eyes, plaquenil, and those awkward tests I had done. And while you're waiting, if there's any phone call YOU should be making right now - to follow up on tests results, mention a nagging symptom that you know isn't normal, or ask someone for a referral or an appointment - do it now. I'll race you to the finish!

(And just to be clear - if any of you are "assuming" that those health to-do's I mentioned above are just going to work themselves out - think again. We're the ones in charge of following up with our doctors. And anyway, you're wasting time. I'm already dialing...)

 

Monday, June 18, 2012

Pushaholic - a pre-requisite of lupus?

One day last week, I ran out of patience. Of course, I didn't know I was out of patience until it was too late. And it was such a shame, too - because the girls and I had enjoyed such a wonderful morning out on the town, full of shopping, lunch, and fun errands. We made stops at five different stores, and while the 3-hour venture was a tall order with a 3 1/2 and 1 1/2 year old in tow, I enjoyed every minute of it. Truly - it was a great girls' day out - and I would have done it all over again the next day.

Until nap time. It wasn't until the nap time routines began that I realized I'd run out of gas - using my last ounce of patience getting two giggling, wiggling girls from store #5 to the car and home.  It wasn't that I was too tired - I was just too spent.

Despite the fact that we'd arrived home in plenty of time to make our 2pm nap time, I just couldn't tolerate their run-of-the-mill pre-nap shenanigans, as they slowly, reluctantly made their ways to their rooms. I got the girls in bed, barely, with more frustration, raised voices, and the like than preferred. I immediately got myself in bed - and then slept away my impatience.

I just wish a little alarm had gone off around 12:30pm that said, "You're having fun now, but that will end, abruptly. Skip store #5 and go home. NOW." But alas, my imaginary patience meter wasn't running that day - nor was my self-awareness meter, apparently.

I find that I have to fine-tune my self-awareness meter rather often, when it comes to lupus. It was particularly necessary when I was just getting used to setting boundaries and learning my limitations several years into my life with lupus. I was always pushing the limits of what my body could handle...simply because I was used to doing more, and in less time! I really had to reassess my driven, accomplished-focused attitude, and call it what it was - a "pushaholic" mentality. I just wanted to maximize my efforts, not waste time, be efficient, multi-task, blah, blah, blah. You know how it goes - push, push, push, until you're out of gas. Trouble is that with a chronic illness- you can't afford to push your body to the limit, much less beyond. You don't recover as quickly. In fact, you can actually put yourself in jeopardy by making yourself sick, making it twice as hard to get back on track.

And the real trouble with pushaholics is that most of the time, we don't know we're pushing too hard until it's too late. We go about things the way we naturally would - with all the determination and resolve we can muster - and then by the time we've pushed beyond our limits, and made ourselves sick, it's too late. We've lost our edge, and now it's back to square one.

But I can promise you - a pushaholic can be rehabilitated, slowly, and with great effort. Not as slowly as my girls made their way to their naps last week, but by allowing enough time to reset those expectations we set for ourselves and tune in to how our body is feeling. In doing so, that alarm will automatically be set to go off BEFORE we overdo it.

In the example above, I was simply having too much - but now I'll know for the next time: the best way to ensure that there IS a next time, is to cut our time short. Just by a hair. Leave the girls wanting more, and it will pave the way for the next shopping extravaganza...where there is sure to be just as much giggling...assuming, of course, the Gorman girls are involved.

Friday, June 15, 2012

Making living well with lupus happen - the reality of my efforts

My stomach. It's back. Or should I say, bathing suit weather is back. Thus, my stomach has more exposure than it's had in months, and it's definitely looming larger than I'd like.

Trouble is - I convince myself that I shouldn't have to work hard to make it look good. I run several times a week, and I watch what I eat. Isn't that enough?

The answer, of course, is no. If you want something, most often, you have to work at it. And usually, it requires a little sacrifice.

It's the same answer I get every time I try and re-assess what it takes to live well, despite lupus:

After 11 1/2 years, can't I get away with a little less sleep at night?

Answer: Nope.

After being good ALL week long, can't I just go crazy on a Saturday afternoon - skipping my nap to run errands or shop all afternoon?

Answer: Not really.

After keeping my stress level to a minimum for months on end, can't I just let loose for once, working myself silly for three days to finally accomplish everything on my list?

Answer: Don't think so.

Now, the actual answer to the above questions is this - "Sure you can - but it will cost you." But after 11 1/2 years with lupus, I know that the price I would pay is not a good value for the wreckage left behind.

The fact of the matter is that I have to work hard at living with lupus. I have to sacrifice here and there. And I can't expect it to happen magically on its own.

And, much to my dismay, the same goes for my stomach. The crunches must come, and the sweets must go.

Darn. I was hoping that things might be different this summer.






Wednesday, June 13, 2012

Summer's here - and so are my lupus bruises

Summer is here, and with summer, comes warmer weather. And with warmer weather, comes shorts, skirts, and the like. And with those guys, come the unveiling of unsightly bruises on my extremities. I wish it weren't so, but I've been bruising easily for years, even before I was diagnosed with lupus. Granted, it's only gotten worse since my diagnosis - and while extreme sun exposure is an issue for me, I'm not as photosensitive as I once was. So now it isn't the sun itself that I dread most. It's the bruising that I've been able to cover up all winter long that I don't like!

While I'm sure the effects of medicine (prednisone, baby aspirin and plaquenil) and the effects of lupus (low platelet count, anemia) don't help, there's not much I can do to alleviate my black and blues. I try not to be too self-conscious of the bruising, and comparing notes with other lupus patients reminds me that I'm not alone. (See comments on my previous posts on bruising.)

But what works best for me? Wearing pants. Even through the heat of summer, wearing pants that cover at least most of my legs works best for my emotional well-being. I walk taller when my bruises are covered, and the days I do wear one of the two pair of shorts I own, I just try and remember that bruises are only skin deep.

This time of bruise unveiling always serves another purpose. too - it reminds me to give people a little slack. I've said before that lupus has made me a more compassionate person (thank goodness!), but it's times like this when I'm specifically reminded that we really don't know what people are up against in their private lives. Little do people know that those bruises of mine are just a small manifestation of a major chronic illness. And little do I know why others look or act the way they do. So here's hoping that the next time you see someone who looks a little "off", you'll think twice before judging. I know I will!

Monday, June 11, 2012

Interview with an author - at Abledis.com - now available!

If you remember, Marissa over at Abledis.com was doing that ambitiously wonderful 12-12-12 project, and dedicated the month of May to lupus. She and I had the chance to talk at length a few weeks ago, and here's the interview. She did a great job of asking pertinent, poignant questions, and we've already heard from listeners out there who agree with the idea of living well, despite their illness. So glad to hear it!  


Marissa also read my book in preparation for "Lupus month"...and according to her, she's made some pretty applicable changes because of it. If it helps her live well, I'm all for it! You can read her thoughts on "Despite Lupus: How to Live Well with a Chronic Illness" here. 


At the close of the interview, Marissa asked me to leave her with a lesson, just as she's asked every other interviewee during her 12-12-12 project to do. Although I probably overloaded her with lessons during the interview, I decided to leave her with the following. Her "Lupus Lesson" blog post is below: 


From Marissa's website: 
This month really impressed upon me the importance of self awareness. In my own experience, I can share that looking within and challenging myself with difficult questions is what helped me move toward acceptance.
This months project member Sara Gorman leaves us with a beautiful lesson.
"I will mention a phrase in my book. It’s a little kind of a poem that I came up with that a lot of people have been able to identify with.
The harder I push, the sicker I get. The sicker I get, the less I resemble myself. The less I resemble myself, the harder I push to regain some semblance of who I used to be.
The point is you’ve got to break that cycle. You’re in control…It starts within. It really does. You have to make up your mind that the way you’re doing it right now, pushing through the pain, isn’t working – or it’s not working as well as it should."

Friday, June 8, 2012

Introducing "The Fairy and the Wolf"

I am proud to announce the latest and greatest lupus book on the market - "The Fairy and the Wolf: A Story about Lupus." This is a children's book written by a friend of mine with lupus. She and her co-authors have done an absolutely outstanding job with the book - the illustrations are fabulous, and the text is spot-on. Deirdre insisted on reading it three times in a row once our copy arrived in the mail.

The authors present a very complicated subject in a simple, sweet way so that kids can understand it.  Deirdre LOVES the fairy concept - and is slowly getting the idea of what lupus is and how it affects me. In fact, there's a page where the fairy explains a few things that the little boy in the story can do to help his mom who has lupus. It's a perfect spot for me to insert my own personal need, which is, "Be super quiet during nap time so Mommy can get her rest." And it works! She gets (and likes) the fact that there's something she can do to help.

This is a great new book for any parent with lupus, and the book will be available right here on my website. Be sure to check it out this weekend. Enjoy!

Wednesday, June 6, 2012

Wake up call - as a mom with lupus

At a recent lupus event, I had the pleasure of meeting a lovely young lady who was volunteering her time with the lupus charity sponsoring the event. She was in her mid-twenties, and her mother had lupus - thus, she was giving her time to a cause that was very close to home. As we began talking, I learned that her mother had, in fact, passed away from complications with lupus just a few years ago. We talked about the symptoms and side-effects of the disease, about her mother's manifestations, and we talked about what it was like for me to live with lupus. She'd heard of my book, and was interested to hear more about what it was like having lupus as a mother of young children. And as I talked, I realized (and she concurred) that she saw me just as she saw her own mother years ago - dealing with lupus while trying to create a normal, stable environment for her family.

I think I had just as many questions for her as she did for me - as I was anxious to hear what her perspective was as a kid growing up with a mom with lupus. Perhaps Deirdre and Bernadette will find themselves in a similar situation some day - conversing with a lupus mom and comparing notes with their own upbringing and experience with lupus. My hope is that when they do find themselves engaged in that conversation, they'll be able to say that their mother is doing well - that she's alive and kicking - thriving, despite her chronic illness.

Of course, that conversation provided a little wake-up call for me - serving as a great reminder of the things I can do to try and ensure that outcome. I know I say in my book that we have to limit our "shoulds"...but in this case, these "shoulds" are mandatory:

That nap - I should take it.
That stress - I should diminish it.
That sun exposure - I should limit it.
My medicine - I should take it.

My life (with my girls, with a supportive husband, without lupus symptoms) - I should cherish it.

I say I would do anything for those little girls. Now it's time to make it happen!

Monday, June 4, 2012

Charity of the month kicks off - starting with LFA DMV!

I attended a fabulous Lupus Summit this past weekend, hosted by the D.C. Maryland Virginia chapter of the LFA - and it was chock full of great speakers and great attendees. I had the opportunity to set up shop with my books and my bags, and it was such a nice venue to talk about lupus with people who truly understand.

Interestingly, it's not that there's a ton of "support group talk" going on - it's actually more a sense of belonging that you feel just being there. All at once, you're surrounded by people who look and act just like you - normal, interesting, intelligent folks who just happen to have a chronic, debilitating illness.

It reminds me of a selection in my book, where I talk about the sense of belonging I got from attending a support group meeting. I remarked as how the best part of my support group was the people, and the fact that we didn't sit around talking about how sick we were. Rather, we talked about our hobbies, interests, and even routine, everyday stuff, like work, home life, kids, and grandkids first.  And then after that, we caught up on lupus stuff. That sense of an active, well-rounded community made me feel as though we were "normal, accomplished people first, and lupus patients second", (Chapter 5: Communicate Wisely.) And that's just the way I want to think of myself when it comes to lupus.

In fact, I realized not too long ago that same spirit carries over into the motivation to produce the pillbags. I wanted to feel like a stylish hip chick first, and a medicine-dependent patient second. If it's possible to achieve, why not make it happen? And why not give other people the opportunity to feel fun and fashionable, too?

So in honor of the positive impact my LFA chapter support group has had on my life with lupus, for the entire month of June, 5% of the sale of every pillbag will go directly to the D.C. Maryland Virginia Chapter of the LFA. So all of you locals out there, now's the time to buy a bag and support the cause...for your very own chapter!

Note that this kicks off our Charity of the Month club - where every month, a specific lupus charity will be designated to receive the charitable donations from the sale of pillbags during that month. Think your lupus charity (or chapter) should take part? Email me at pillbags@gmail.com. I'll look forward to it!



Friday, June 1, 2012

Debt Snowball: Letting the effect work for lupus

Are any DL readers out there familiar with best-selling author and radio personality Dave Ramsey, of Total Money Makeover fame? Not sure how I came across him (Probably Johnny, come to think of it), but I've read his book and it's great.

One of the steps in the Total Money Makeover is something he calls the Debt Snowball. The idea, as it applies to paying off debts, is to list all of your debts in order, and then work on paying off your smallest debt first, not your largest. Starting small allows you to obtain a quick "win" in the payoff category, building momentum so that you continue the behavior. He says:

The point of the debt snowball is simply this: You need some quick wins in order to stay pumped up about getting out of debt! Paying off debt is not always about math. It’s about motivation...When you start knocking off the easier debts, you will see results and you will stay motivated to dump your debt.


The same applies to the steps to living well. Your instinct might tell you to try and make the big changes first...that the little ones can be saved for later...when in fact, the exact opposite might work best. I unknowingly employed the Debt Snowball technique to my life with lupus way back when, and it worked wonders.

Here's what I mean:

In my book and throughout my blog posts, I cite three major changes that really secured my position on the path to living well. One was going part-time at work, another was starting Cellcept, and the third was cutting my hair. And I did them in the exact opposite order.

While I don't pretend that cutting off my hair cut was anything short of monumental...it was the easiest and  lowest hanging fruit of the three. Why? Because, first, I had major concerns about starting Cellcept (although it turned out to be a miracle drug for me), and needed time to consider my options. And two, I knew approaching my company to discuss a part-time position was going to majorly impact my life (financially and emotionally), and I was reluctant to take the leap.

Cutting my hair, however, involved a relatively quick decision that affected me and only me- so the hair was the first to go.

And it was the first of many changes to come, as that single act started a series of events that literally changed my life forever (hence this blog, my book, and my bags...not to mention my two kids!) Once I cut my hair (which you can read about here), I was like a new person - empowered, confident, and encouraged. I felt a sense of self that I hadn't experienced in a long time, and with that momentum, I quickly made the next move with the Cellcept - as it was the second-least impactful change in my mind. While it was a major step that I considered carefully, it definitely wasn't as major as making a permanent change at work. I figured I could stop the medication at any time, and surely the side-effects I was so worried about wouldn't have time to kick in.

But soon after I decided to start my new medication, I made the decision to approach my boss about a change at work. It just felt like the right thing to do - the momentum from the first two changes so strong I was practically propelled into it.  To have broken the wave would have felt unnatural - I wanted nothing more than to continue the emotional boost felt after I cut my hair, and the positive impact of starting the new medication.

And truthfully, I don't know if I would have EVER made a change to my working situation had I not made those other two changes first. And if that change hadn't taken place, this post wouldn't even exist!

So apply Ramsey's advice today - make a quick list of some changes you could make that would allow you to start living well. Instead of making the big ones first, start with the small, incremental changes that are good for your health, but can be implemented relatively easily and quickly. Let the impact of those changes build momentum so that you continue making good-for-you decisions, allowing you to eventually make those major changes that will truly allow you to live well, despite lupus.