Wednesday, January 29, 2014

Pillbag Feature: Pulp Nature and February's Charity of the Month



Be sure to check out the latest Pillbag shoutout at Pulp Nature, a very cool website dedicated to health and autoimmune living. Thanks to the gals at Pulp Nature for putting together a great article about the Pillbags - I LOVE seeing the Pillbags article under the "Fashion/Beauty" section of a website!


I'm happy to be teaming up with Pulp Nature for February's Charity of the Month. Because Pulp Nature focuses on the health and wellness of those living with any autoimmune disease, rather than just lupus, we've decided to donate the proceeds of the sale of all Pillbags during the month of February to the National Multiple Sclerosis Society, a charity near and dear to the founders of Pulp Nature.

Take a moment to check out their site here - there is so much good stuff, you're liable to be there for hours!

Monday, January 27, 2014

The lupus interview question of the year

"What does it feel like?" 

This was the question posed to me during a phone interview I did recently for a lupus research group. We'd been talking for close to an hour, and most of the questions up to that point had been fairly routine. When was I diagnosed? What were the symptoms? What is my current treatment? And on from there. But then, this question popped up, and it gave me pause. 

"What does it feel like...when you've just come out of a flare? When you wake up one morning, and for the first time, you feel symptom-free. After weeks or months of feeling crummy, what does it feel like when those symptoms finally subside?" 

What. A. Fabulous. Question. 

Because the feeling, for me, is almost indescribable. It can be one of the most exhilarating feelings in the world, and every time I've experienced it, the sense of relief I feel is exponentially greater than the last. It's as if the world starts spinning again. I almost feel free, as if I'm no longer trapped or stuck in something constrictive. Within moments of realizing my symptoms have subsided, I immediately feel inspired and hopeful - feeling as if this is my chance to start again. To begin rebuilding. To finally get on with living. 

Now - before I get too carried away, I'm going to admit that in the old days, I misinterpreted this surge of inspiration. The moment I realized that my symptoms had faded into the background, I took it as a sign that I had been officially recharged, 100% full. And the goal was then to exhaust that battery as quickly as possible. Or so you'd think. I would run as many errands as I could fit in, and work as long as I could handle. I wanted to maximize the time I had without pain, because you never knew when it is coming back. Yes - in my early years with lupus, I viewed the end of a flare as a ticket to Busytown...where I should move at lightening speed to make up for the time I'd been down. The energy I put toward re-establishing my ground was frenetic...and if I had stepped back from my rampage, I probably could have seen how uncomfortable a pace I was keeping. But back then, I didn't understand the cumulative affects of lupus. I didn't grasp the chronic side of the disease. And I didn't know how to give the illness the respect it deserved. 

But fast forward to today. I'm not 100% cured, but I certainly don't view symptom-reprieve as a shotgun at the starting line. I realize that life with lupus is always evolving, and I can't ever forget that however I'm feeling right now might not last forever. So my job is to actually make that symptom-reprieve last as long as I can, by easing back into activity, taking it slow, and minding my boundaries. If I remain calm, the disease will remain calm. If I ever so gently test my limits, with the ability to pull back if necessary, I can usually get away with a whole lot more activity than if I'd approached it like I did years ago. 

So when the interviewer asked me that question - I paused. I thought back to the last time I'd experienced that sense of relief, just a few weeks prior. I remember that morning weeks ago, waking up, stretching my fingers, and feeling absolutely no swelling or joint pain. I recall breathing so deeply that my body actually lifted off the bed. And with a big smile across my face, I propped myself up on my elbows (because they didn't hurt!), and thought about the things I was going to experience that day. Not as in "tackle" or "accomplish", but as in enjoy. What were all the things I was going to find pleasure in doing because I was pain-free? My girls came in shortly after I'd woken up, and I looked at them and thought about all the hand-holding, hair playing, tickle fighting we were going to engage in that day. And I just kept smiling. Because when it doesn't hurt to smile, you can hardly help but do so. 

Friday, January 24, 2014

Making sure lupus is NOT a conversation stopper

When I'm in the midst of symptom activity, I try and make note of how often my symptoms come up during the day - both in the quiet conversations in my head, and those that I have with other people. I do this primarily for two reasons:

1) I realize that how often I talk (or think) about my symptoms typically indicates how disruptive they are to my daily routine. And their level of disruption is a good indication of how unruly my disease has become - which is fodder for both my chronic control spreadsheet and my next doctor's appointment. If, at the end of the day, I've only thought about or mentioned my joint pain once or twice, that's not too bad. Maybe it was when I was trying to open the new bottle of cranberry juice, or as I was trying to finagle the lock on our back door - both of which can be sticky wickets.  But if my joint pain was top of mind all day long, and each hour I encountered movements that made me wince, I need to make note. Joint pain throughout the day is not acceptable, in my book (my proverbial book, that is). I used to think it was, but I've learned not to lower my standards so quickly. Sometimes, there are steps to be taken to eliminate the pain...and I'd like to at least consider those options with my doctor.

2) I'm cognizant of the fact that I have two little pairs of ears that listen quite closely to what I say...about anything, including lupus. I try and dole out just the right amount of lupus tidbits so that the disease itself doesn't seem so scary, but I have to balance that with a little lupus reality, which can be a bit, well, scary. And I find myself wondering what Deirdre and Bernadette really think about lupus. Does it make them worry? Do they think it's inconvenient to have a mom with lupus? Do I talk about it too much? In too much detail? Should they even know when my joints hurt? Should I be shielding them from my discomfort?

But just when I think I need to overhaul my efforts, one of the girls comes up with the most mature, level-headed comment regarding lupus that demonstrates that the balance is, in fact, just fine. I know I've written about their level of lupus understanding before, but here are a couple of insights that have emerged from the small flare I've been experiencing the last few months. At three and five years of age, I couldn't ask for a better grasp on the disease...probably a little clearer and more objective than my own perspective!

A) Lupus is NOT a bad word:

A few weeks ago, I was about to head upstairs to take a nap. Johnny was settling in with the girls, and a neighbor girl came by to play. She's over often, so as I was heading up the stairs I said hello, and mentioned that I was heading up to take a nap. She said very thoughtfully, "You know, I've never thought about it before, but my mom never takes a nap. I wonder why not?"  I looked at Deirdre and she looked at me, and before I could say anything, she launched into an explanation. She explained how I have a thing called lupus, and it makes me really tired and it can sometimes make me a little sick. But if I take a nap everyday, I feel much better and I won't get sick.

Well. I guess we'd met our daily quota for spreading lupus awareness. I congratulated Deirdre on her thorough and accurate explanation, and couldn't help but smile all the way to my room. Whether or not those three little girls truly understand the affects of the disease, they at least know that lupus is not a bad word. It's not something to whisper about. And it's not something to keep hidden.  At least that's the way we're playing it in our family.

B) Lupus isn't something to be afraid of:

I've mentioned before that my girls and I like to primp. We like to spa, do hair, and paint nails. That said, sometimes my joints don't allow me to comfortably use the flat iron, hold a bottle of nail polish, or give foot massages. Thankfully, I've found that when I'm hurting, and even when my joints are visibly pained or swollen - the girls don't shy away from touching, holding, or hugging. Just the other morning, Deirdre came into our room first thing in the morning, and as we were talking, I mentioned that my hands weren't feeling very good.  She looked me in the eye and said, "Oh Mommy, do you want me to hold your hands for a little while?" I've told her before that putting her hands against mine makes my fingers feel so much better - just feeling those perfectly soft and supple fingers and joints gives me hope and helps to ease the pain. But the fact that she so lovingly embraces my hands in an effort to ease the pain of lupus shows me that she's simply not afraid. Bee did a similar move recently - I was running my fingers under hot water to try and ease the discomfort, and Bernadette caught sight of what I was doing. She stopped what she was playing with, came over, and said, "Mommy, let me give those hannies a little kiss. That will help for sure." Indeed, it will, my sweet Bernie.

And they don't stop at joint pain. When my fingers turn colors in the cold from Raynaud's, they are the first to offer up their gloves or rub my hands. And when my fatigue is getting the best of me, Dee will often tell me to come over and lay my head on her lap. Now I'm not saying they're perfect...but they aren't afraid. And I like that.

C) Lupus doesn't affect absolutely everything:

This is a tricky one - because lupus does affect a lot of things. But what I've discovered is that lupus, more than anything, requires accommodation. And if everyone's game for the work arounds, then life can go on as usual. Johnny is instrumental in helping to achieve this level of acceptance. He often just picks up where I've left off - in regard to doing laundry, washing dishes, making dinner, or taking care of the kids. If I'm a little wiped out at the end of the day, Johnny asks the girls what he should make for dinner. If I'm running on empty in the morning, he scoops up the girls and does their morning routine. In fact, Johnny left early for work one morning a few weeks ago, and Bernie and Deirdre came into our room after he'd left. I asked them if they were ready to go down for breakfast, and Bernadette said, "But who's going to make it for us?" Wow. Guess he's been taking over a lot of the breakfast duty. But it works - and the girls have learned that pitching in here and there makes for a happy and healthy mama.

In fact, taking on tasks that they might normally expect me to do has fostered a new sense of independence in them both. And I've enjoyed watching them mature before my eyes. At lunch time the other day, Deirdre said to me, "Mom, why don't I make my sandwich, so you don't have to hurt your hands?"  Bernadette followed suit, and now I estimate three to four times a week, the girls make their own sandwiches. I oversee the process and pitch in when needed, but they're quite proud of their creations. And Deirdre's helped me make dinner numerous times. I know she's at the age where she's eager to learn and experiment, but every once in awhile, she'll gingerly take the whisk from my hands, saying that she should probably do that for me. Hey - if I'm in pain, I say have at it!

But equally as important, lupus suffering isn't all we talk about. We talk about the good stuff, too - the businesses I've hatched because of it, the people I've met, the great meetings and conferences I attend. The girls know my doctors, my lupus friends, and can explain the benefits of the Pillbags to just about anyone. Lupus is simply part of our daily routine. It's not a conversation stopper. It just IS.

Of course, there are those glorious weeks where lupus doesn't come up in conversation at all. But because those weeks are often few and far between, I figure if the girls know a little bit more about systemic lupus than their peers do, so be it.  Most importantly, they know that lupus doesn't interfere with the love I have for them, nor theirs for me. And if it's made them kinder, more sensitive, more compassionate young ladies, that's certainly a consequence I can live with.

Monday, January 20, 2014

Just a spoonful of Sugar helps the medicine go down...

My grandmother had a wonderful way with words. Specifically, she had a way of using her words that made you feel like the sweetest, smartest, most talented person on earth. No matter what I presented to her - be it news from my workplace, updates on my (then) dating life, or samples from a new cookie recipe, she thought it was the best, most interesting thing she'd ever heard (or tasted). And she was sincere about it, too. She taught me the value of simply being nice. I wish I had an easier time of following in her footsteps!

Grandma Gretter passed on a few years ago, but there is someone else who very successfully follows in her footsteps, and that is Johnny's grandmother, affectionately known as "Sugar". Sugar is just like my grandma, always encouraging, engaging, and as supportive and loving as can be. When I first joined the Gorman family, that loving, yet overwhelming large herd of people, she was the beacon of light for this in-law-to-be. If I needed a break from the chaos, I could count on Sugar. If I wanted some congenial, yet interesting conversation, I went to Sugar. She was and is one of the best parts of becoming a Gorman. And I love her dearly.

Having been diagnosed with lupus almost from the day I joined the Gorman family, Sugar and I have had the opportunity to connect on yet another front: life with a chronic illness. Hers is Rheumatoid Arthritis. Mine, of course, is lupus. We've compared medicines, pains, and immobility. We've talked about our current dosage of prednisone, how plaquenil is treating us, and how supple the joints are feeling on any given day. No matter how I'm feeling, I always know that Sugar will understand.

So on Thanksgiving eve, after fatigue, joint pain and swelling had come and gone in waves all day long, I found myself in conversation with Sugar. (Truth was I wasn't very conversational at all, given my condition, but I was mustering up the energy to talk to one of my favorite ladies.) She innocently asked me how I'd been feeling, and immediately tears started to well up. Here was my partner in pain, my go-to medication buddy, asking me the honest question that I'd been trying not to admit all day long. And so I told her. The truth. I told her that, honestly, I hadn't been feeling that well for quite some time. I mentioned how I'd been forced to increase my medication (which is always a bummer), and that I was still fighting a lot of fatigue. And then I added, which was difficult to admit, that because I'd been feeling so crummy, we'd hired another babysitter during the week to make sure every single day was covered for my naps. (It's just hard to be the only in the family who can't "do it" alone.) As I was fighting back tears, with thoughts of failure going through my head, Sugar came through. Just like she always does. She turned to me, and with conviction, said, "Well, of course you need a babysitter. Your kids are young, and they're at an age where they still need you constantly. You can't do that all by yourself. No one should. Of course you have a babysitter. And of course you take a nap. That's the smartest thing you can do."

And just like that, Sugar made me feel like the most normal, practical, well-adjusted mom in the world. Like I was the smart one, and the one with the advantage. Instantly, my feelings of doubt, uneasiness, and frustration were gone. My pain and fatigue still lingered, but I felt a burden lifted. The burden of trying to keep a smile on my face, when I was crumbling inside. Of trying to act strong and resilient, when all I felt was weak and vulnerable. Of denying the fact that making good decisions for my health, when no one else around me had to make them, was a hard thing to do. I thanked her for her kind words, but I'm sure she had no idea the impact she'd had during our short exchange. She didn't say much, but she'd said enough.

A few minutes later, we all made our way to dinner. Shortly after dinner, and just as soon as it wasn't obvious, I snuck upstairs to the spare bedroom where the girls would be sleeping that night. I closed the door, curled up under the covers, and went to sleep for almost two hours. I did so because Sugar reminded me that taking care of myself was smart. It was logical, and it was the only thing that could be done. I took a nap, in the midst of our Thanksgiving celebration, because, in essence, Sugar told me I could.

Here's hoping you get a spoonful of "Sugar" sometime soon, too. Everyone deserves one!

Wednesday, January 15, 2014

Putting "Lupus" on the map...literally!

Thanks to the Hibbs Lupus Trust, a charitable lupus group based in the UK, I feel like I can mark "Lupus Geography 101" off my list. Did you know there's a street in London called "Lupus Street"? Below, you'll see the image of it on Google Maps. From what I can tell, Raynauds Avenue and Sjogrens Court are not cross streets. But I suppose that would be a bit much, right?



And believe it or not, there's also a "Lupus Way" about 200 miles from "Lupus Street". The image of that is below.




So how did I come to find out about these streets whose names are oh-so-close-to-my heart? Via John Hibbs, one of the Founders and Trustees of the Hibbs Lupus Trust. He cycled the 200 miles from Lupus Way in Ellesmere Port all the way to Lupus Street in London, in order to raise awareness and funds for lupus. Now that is dedication!

You can read about it here and see pics here, but let me tell you a little bit about the Hibbs Lupus Trust. This charitable group was established in 2011 by the Hibbs Family, in honor of Viki Hibbs who was diagnosed with lupus at the age of 25, another founder and trustee of the Trust. The team of volunteers who donate their time to the Trust are dedicated to providing information and support to people affected by lupus. They have an FB online presence, have an established support group meeting schedule, offer an information advice line, and even have athletic challenges designed for those who want a way to raise money for lupus. They are doing all they can to spread awareness. From across the pond, I send kudos your way!

So the next time I feel like the street I live should be called Lupus Lane, because of lupus' frequent visits (all of which are unwelcome), I'll remind myself that the next time I'm in London, I'm going to take a picture of myself on the real Lupus Street. And that indeed will be a joyous occasion. If I'm traveling abroad, it will be a sign that my disease activity has quieted and I'm back in business. Something to work toward for sure!

Monday, January 13, 2014

Prednisone: Clawing my way back to 5mg

I originally had this post titled "Turkey Day Disaster, a.k.a the Lupus Party Fowl". But, instead, I decided to focus on the task at hand, which is to taper off the prednisone I had to increase due to said disaster. The goal: to return to my former lupus glory of taking 5 mg of prednisone one day, 0 mg the next. Oh, how far off those maintenance doses seem some days!

I wish I could say that over Thanksgiving, I did something really wild, crazy and fun to put myself back in a mini-flare. I wish I could say I ran a Turkey Day marathon, pulled a couple of all-nighters, partied like a rock star, went shopping from sun up to sun down on Black Friday, or even worked my fingers to the bone selling Pillbags. But alas, none of those are true. Party, I did not. Shop, I did not. Run 26.2, I decidedly did not.

What I DID do was travel. And miss a nap. And get a poor night's sleep. And that was about it. That's all it took to send me back to mini-flare land.

But I learned once again what doesn't jive with my chronic illness: relatively quick turnaround road trips that begin with a stressful send off, involve missed or less than sufficient naps, and include holiday festivities that sidetrack me from sitting in front of the fire sipping tea in my pajamas in order to recoup. I wish it weren't so. But it is.

The good news (no, make that GREAT news) is that I learned from my mistakes, and was able to put my wisdom to good use just a few weeks later. We had a road trip planned for the week after Christmas - a fun filled fabulous few days of visiting some of our favorite family in the Mid West. But we canceled it. Because it would, no doubt, have involved a wee bit of stressful travel, a missed nap or two during travel days, plus, plus. plus.

It was sad to cancel our trip. I got mad. I got sad. I cried. But amongst the tears, I promised myself that I would never have to cancel another trip because I wasn't properly prepared for a previous one.

So there. Emotional growth occurring right before your eyes. Who knew that was on the agenda today?

(Note: It really helped to make the decision to cancel our mid-west trip because our hosts were as understanding as could be when we said we couldn't make it. They wished me well, and hoped I was back on top soon. I can tell you this - canceling that trip will no doubt propel me to the top that much faster.)

So what went wrong the weekend of Thanksgiving?  Just the typical foibles that go along with trying to keep a chronic illness in check while heading into the holiday season:

Travel: I find traveling with lupus isn't impossible, it's just that my body tends to need a little more TLC than normal. So I try and prepare for a trip in advance and with as little stress as possible. Otherwise, I'll knock myself back before we even pull out of the driveway!  For this trip, I packed early, baked cookies the weekend before, wrapped gifts days in advance, and was more than ready for the day of travel. But when it came to the other stuff I was trying to cram in before we left, I hadn't done so well. I needed at least another day and 1/2 to get all of my work done. But when I couldn't find the time, I just crammed it into to the days I had. My parents were visiting at the time, and my dad, who'd come along for the ride on one of my mini-errand marathons one morning, said, "Do you ever have a chance to just sit and relax?" Oh, if only I'd really heard what my dad was really saying!

Nap: I'd planned for my nap on the day we were traveling, but not quite well enough. I'd accounted for an extra hour of holiday traffic, but not two, or even three. We missed my nap time by an entire afternoon - and although I tried to get some shut eye in the car, it's not the same.  My anticipated 2-4pm nap time ended up to be a restless 45 minutes from 5:45-6:30 once we arrived at our destination - which is highly unsatisfactory. And my naps in subsequent days weren't fabulous enough to make up for the sleep deficiency. I think if I'd been in solitary confinement for three straight naps in a row, I might have done okay. But with a houseful of folks, it was tricky.

Overnight:  The sleeping arrangements should have worked, but they didn't. The girls were to share a bed (which never works well the first night...or really the second) in a bedroom upstairs, and Johnny and I were to bunk up downstairs in the study on an air mattress. It usually works, but that first night, the girls didn't settle in until way too late, and then Bernie woke up in the middle of the night. I should have been able to get back on track, but again - when I'm desperately trying to make up for missed sleep, the conditions have to just be perfect.

Previous disease activity: Most importantly, I was still coming off of a flare from September. By the weekend before Thanksgiving, I had proudly tapered from 10mg a day all the way down to 5 mg/2.5mg every other day. Major progress by any lupite's standards, and I was so very close to the goal of 5/0mg every other day. But I had to be on my best behavior. And that didn't happen.

By the second day of the trip (Thursday), I was overcome with fatigue, had joint pain and swelling, and felt oh-so-crummy. I took naps every few hours, feeling fabulous for an hour or two afterwards, then crashing hard. The weekend continued  -  with everyone pitching in to make sure I could try and recover, but as often the case, I just couldn't get over the hump. The fatigue continued, the joint pain and swelling increased, and I had to increase my medication, per doctor's orders. To everyone else, it probably seemed as if this mini-flare was manageable. But Johnny and I could tell this flare had some bite to it, and I'd undone all the progress I'd made over the last two months. Ugh.

But - onward and upward. I've already started another round of tapering (successfully, I might add), and in the coming weeks, I'll tell you about my doctor's appointment upon my return home, the encouraging words of Johnny's grandmother that came at just the right time, and coincidences that always seem to happen with new medications and me. Stay tuned!


Friday, January 10, 2014

Momentum lost, but health preserved. Listening to my lupus body!

Every Thursday at noon, I drop my girls off at their aunt's house for an afternoon of fun with their cousins. It's a glorious arrangement we have, my sister and I. She drops her kid(s) off at my house on Tuesday afternoons, and my kids go to her house on Thursday afternoons. Because my girls are in school on Thursday mornings from 9-12pm, I basically have an entire day to myself. I'm able to get so much accomplished - free of interruption - and have a great time doing it. And I know the girls are having just as much fun.

Yesterday was one of those fabulous days. It was a bit different, because in the morning, I chaperoned Bernie's field trip to a nearby high school for a little kid's concert. (I love when we have the opportunity to do that!) But come 12pm, it was off to Aunt Katie's for an afternoon of fun. As we were driving over to my sister's house, I was already imagining the handful of work calls I was going to make once I'd dropped the girls off. In my head, I'd prioritized the emails I was going to respond to, and had already mapped out the retailers I was going to follow up with, now that their holiday Pillbag inventory had been (hopefully) diminished. I had it all planned out - every minute of the afternoon, up until my nap, with big plans to maximize the hour or two after I woke up. I tell you - it was going to be a productive day, if ever there was one. 

But then, lupus happened. 

As I was driving home, with wonderful thoughts of to-do's being checked off in my head, I started to yawn. Not once, but several times. And then I started to feel a little fatigued. And I got a little blurry eyed. And then I realized I was ready for my nap. 

Ugh! And on the cusp of an explosive two hours of accomplishment-mania! Of course, I was probably a little hungry, too, since I hadn't eaten lunch yet, but really, this was just my normal afternoon fatigue setting in. I think my body just allowed it to creep in earlier, simply because it could.

So as this was all taking place on the 10-minute drive home, I had a choice to make: give in to the fatigue by taking an immediate nap, or push through the exhaustion to get a few things done. And you know how tempting the latter can be! 

In the first three minutes of the drive, I relented to strike the calls from my to-do list, but still vowed to tend to the emails and retailers. During the next three minutes, I deduced that the retailers, too, could wait, but that the emails would be easy enough to knock out before taking a nap. But during those last three minutes of the ride, I wised up and decided to truly listen to what my body was telling me. 

It was tired. It wanted to rest. It didn't want to struggle through those emails. It didn't want to squint to see the computer screen through tired eyes. It didn't want to sluggishly type responses that may or may not have made sense. It wanted to go to bed. And I had an entire afternoon of peace and quiet, the perfect setting for an early and successful nap. Was I really going to deny myself the nap of all naps? 

(Oh man. What if I'd actually said "yes" to that question? I think I'd have to fire myself from this blog!) 

Thankfully, I chose wisely. I agreed not to deny my body of the thing it so desperately needed right then. I arrived home, content with my decision to make a quick sandwich and then go right up to bed. Darwin was waiting for me when I got there - ready and willing to put his busy work day on hold to help me nap. 

More than two hours later, I woke up - completely refreshed, feeling proud and, if you can believe it, productive. I had truly "accomplished" what I needed to that day: taking care of myself, despite lupus. The real task on every lupite's agenda!  

Thursday, January 9, 2014

Enter to win! Pillbag Give-away ends today!

Make sure to stop by the blog, Getting Closer to Myself by midnight tonight to have a shot at a Free Pillfold! Leslie, the blog's creator, is throwing a major post-holidays gift give-away, and a Pillfold is up for grabs. Click here to go to her blog, and leave a comment as to why you'd like a free Pillfold. You can also see the other great gifts she has available. Good luck and happy commenting! 


Wednesday, January 8, 2014

Monday, January 6, 2014

Good things come to those who nap : Lupus motto 2014

I woke up yesterday from a long, wintry afternoon nap, to read on Twitter that I'd been chosen as one of the Best Lupus Blogs of 2013 by Healthline.com. Wow!! I'm thrilled to have been selected! Be sure to click here to see the winners' slideshow.

Many thanks to Healthline.com, Tracey Rosencrans, who selected the winners, and George Krucik, MD, MBA,  who medically reviewed the selections. I am honored to have been selected alongside the other lupus bloggers, many of whom I've "met" and worked with over the years. There are now so many valuable resources available for lupus patients on the internet- and you can find at least eleven of them right here on this list.  (I'll not include DL, which makes for the 12th on the list. If you're reading, I'll assume you think we're A-Okay!)

My husband is always teasing me that good things happen when I nap, which he says should encourage me to take them. If this is any example, I guess there might be something to it!
I think my motto for 2014 is going to be "good things come to those who nap." Let us be encouraged, empowered, and motivated to nap away, and may we be bowled over by goodness and prosperity!


Friday, January 3, 2014

Ushering in the new year - armed with lupus knowledge

Wow. 2014. We made it!

The start of a new year is always a good time to reflect on the previous year's happenings - big, little, and in between. 2014 was a good year for me, my family, my house (!), and my businesses. Growth, physical and/or emotional, happened in almost every aspect of the Gorman household (save our waistlines), so I believe it was a success!

Moving back into our renovated house was a big one for us, and I continue to enjoy the "newness" of it all. Our place is now pleasing to the eye, functional, and designed just the way we wanted it to be. We wouldn't change a thing - which is the best result possible.

Sending Deirdre to school five days a week (albeit only 3 hours a day) was a bigger adjustment for me than I thought it would be. It was my first real introduction into the the world of "school-aged children", and being on someone else's schedule (in this case, the school's) was a brand-new experience. For the first time ever, we had to help Deirdre get dressed, fed, and out the door every day at the exact same time (and Bernadette, two of those five days). It was an adjustment for sure. We also had to adjust to not having Deirdre around every morning (read: I missed her), and it became painfully obvious that the hours Deirdre and Bernadette are in school are only going to increase year after year. Ugh. How did I become an empty-nester all of a sudden? :)

This was also my first full year in the Pillbag business, and it was great. I've learned so much about working with manufacturers, retailers, and suppliers, and have enjoyed interacting with my customers, many of them multiple times. Who knew people would keep coming back to try the newest Pillbag design?! I will continue to try and grow the niche business I've carved for myself, while striving to keep my ever-evolving chronic illness in check. What a balancing act - one that takes some serious concentration!

Goals, changes, and adjustments aside, I find that my greatest success of last year is that I'm still here, alive and well. That I've made it yet another year with lupus in tow is the greatest feat of all. As 2014 begins, I know more about what works with lupus, and what doesn't than ever before. I have a better understanding of how far I can or cannot push myself, a more accurate account of what makes for stable health and wellness, and a more detailed plan for what I need to do to achieve that stability. I've added (and subtracted) a few new medications to the roster, I've gathered more (indisputable) evidence on why I need my rest, and understand even more than I did a year ago that it's okay to ask for help.

Sure, I think I need a few more hours of sleep than I did a year ago. And yes, I'm on a slightly higher dose of medicine than this time last year.  But it's not the numbers that I find make for a successful year. It's the knowledge. It's knowing that regardless of the ebb and flow of a disease like lupus, you can still come out on top. You can still enjoy your family. You can still make exciting changes to your house, if you choose. You can still make contributions in a work-like environment. You can still strive to be well. And you can still strive to live well, despite lupus.

So welcome, 2014. I'm ready for you!