Monday, July 29, 2013

Feeling vulnerable in the face of lupus? Me, too!

My husband recently shared an inspiring article with me, and I thought I would pass along some snippets from it. The piece was written by Richard Rohr, OPM, a Franciscan friar ordained to the Catholic priesthood in 1970, who is an internationally known inspirational speaker. The selections I've included below, adapted from The Shape of God: Deepening the Mystery of the Trinity, really struck a chord with me. Back when I was fighting so hard not to let lupus change me, this was my mindset:

"Human strength admires holding on...admires personal independence.  We like control more than surrendering. We admire needing no one. We are practiced at hiding and protecting ourselves. Our strength, we think, is in asserting and protecting our boundaries."

This is exactly the way I felt those first few years with lupus - as if the only way I was going to beat lupus was if I fought to hold on to the life and abilities I had before the disease took hold. If I refused to make accommodations, and I made no allowances for the debilitating symptoms, lupus would just fold under pressure.  I didn't give in, because I thought I wasn't supposed to. I thought the onset of lupus was a test, and I was determined not to fail.

Today, in my Living Well, Despite Lupus workshops, I talk about how much I despised feeling "dependent", "reliant",  and "vulnerable" in those early years. I was uncomfortable depending so heavily on my doctor who held the key to my treatment, I didn't like relying on my family to fulfill even some of my most basic needs, and I hated the vulnerability that lupus brought - never knowing what symptoms would hit when. I felt as if my life was completely out of my control, as if I was no longer capable of asserting myself against the curves life threw at me. That feeling of weakness took its toll on my self-worth, and I wondered if I'd ever feel valuable again.

Over time, I learned to how to combat those feelings, and how to feel whole again. I realized that in fact, giving in wasn't giving up, and that embracing the disease had its merits. Eventually, I discovered that relying on the supportive network around me (family, friends and doctors included), could actually make me feel empowered, if I just allowed it to. I was deriving my self-worth from being independent and self-sufficient, but came to realize there's tremendous value in being boosted up by others in an effort to live well, despite my chronic illness. Sharing the burden and utilizing my resources not only lightened my load, but it re-instilled feelings of hope that had been absent for all too long.

My hope is that over time, you come to the same realization. I realize it takes time and effort to do so, but I encourage you to keep at it. Simply strive to embrace the disease one accommodation at a time!

Friday, July 26, 2013

Barn Door Installed!! Woohoo!!

We're getting so close to completion now - the barn door in the master bedroom (to cover the treadmill niche seen there on the left) was one of the last things to be installed. I simply can't wait to move back into our new "old" house...or is that our old "new" house. (A friend of mine said at this point, I can just start calling it "our" house - and after July 31st, it will be our only house!) Either way - so excited that this phase of our life is coming to completion!

In the meantime, hope to see you locals at The Friday Affair at Hollin Hall today. The Pillfold Trocadero has made a surprising surge this week in website I'll be interested to see if customers at The Affair gravitate toward the animal print, too.           

And next week, I'll look forward to blogging about my final thoughts on this renovation. Now that the end is in sight, I can start unleashing all of my "Undergoing a Renovation with Lupus in Tow" posts. Should be fun...and cathartic! Have a great weekend - I'll be packing, and packing, and packing. But so happy to be doing so, because it means we're moving! 

Wednesday, July 24, 2013

Hanging my "Help Wanted" sign...where people can see it.

A few days ago, my fabulous 17-year old babysitter kindly offered to help me with my move. She said she could pack boxes, watch the kids, or whatever we needed her to do. She said she was happy to assist.

How considerate of her, right? Of course, I responded as I always do when people offer to help: "Oh, that is so nice of you. Let me figure out if I need any help and I'll be sure to let you know. I really appreciate the offer."

At least, that's what I say.

But here's what I'm thinking:

"Oh, that is so nice of you. I usually don't accept help because I insist on doing everything myself. I'd rather run myself into the ground than allow myself to feel indebted to someone else. But thanks a lot for offering."

Call it pride, stubbornness, or an instinctive fear of looking weak and vulnerable, I find it very difficult to accept help. If I think I should be able to do something on my own, I do everything I can to make sure I, alone, finish the job.

But in preparing for this move, while attempting to finish up the renovation, run my business and blog, manage two kids, a dog, and the household, I'm coming up a little short on time and energy.

So I'm going to do what I would normally NEVER do...and that is accept the help that is offered to me willingly and without guilt. Ugh. What a task!

I'll start with my babysitter, but promise not to stop there. In fact, we're taking my in-laws up on their offer to come down the day of the move and help out. When they first offered, I gave my typical "That's so nice of you" answer, but immediately dismissed the thought because of that unwillingness I referenced above. But as the weeks have progressed, I've decided to start acting responsibly, and choosing wisely. I told Johnny I think it would be a wonderful idea to have them come down, and thankfully, they're still game. Having them here will be such a relief, the girls will love it, and I'll love it. I just had to get over myself before I could say "yes."

So here's to the beginning of a new era in the help department. May my "Help wanted" flag fly high and proud!

Sunday, July 21, 2013

Brave new face - a new resource for lupus patients

GlaxoSmithKline (the guys who brought us Benlysta) just launched a new campaign to assist lupus patients prepare for and communicate during their doctors' appointments. They offer cheat sheets to track symptoms and their frequency, log medications and their side-effects, and even a customizable journal to keep up to date on how you're feeling. All great resources...and very similar to the Chronic Control spreadsheet I talk about in my book and on my blog. Check out their Brave New Face campaign and the lupus check website here!

Friday, July 19, 2013

The impatient lupus patient - learning not to rush

I'm good at a lot of things. But I'm REALLY good at being impatient. I've always been like this - wanting things done "yesterday", rushing to finish as fast as humanly possible, even cutting corners so that I don't have to wait a single moment longer than I have to. But it's only been within the last few years that I've come to understand that some things aren't supposed to be done quickly. Not only can they not be rushed, they turn out markedly worse if they are. Yes, much to my dismay, there are many situations which are completely out of my matter how much I wish they weren't.

Over the past seven months, I've chosen to immerse myself in a project (a little thing called a whole-house renovation) over which I've had very little control. Sure, there were decisions to be made, and I can assure you, we were involved in every one of them. But when it came to productivity, time-frame, and getting the job done, it was pretty much out of my hands. The process could not be rushed - and if I tried to do so, quality would have been compromised and the results would have been less than stellar. It was the ultimate exercise in patience. And with our move-in date of July 31st right around the corner, I think I'm going to make it.

The renovation process has served as an excellent benchmark for me. Everything un-related to the renovation gets compared to the wait time I've endured during this process. If I find myself becoming impatient about something, I just think about the 3 extra weeks I waited (patiently) for my cabinets to arrive, the 5 additional weeks for my bathroom tile to be finished, or the delayed schedule of the painters, gutter installation, or the door hardware. The list really COULD go on...but bottom line, there's was nothing I could do but wait. Patiently. And boy, is that difficult.

While the renovation definitely tops the list of things that I've learned I can't rush, here are a few more things on my list::

1) My body. I used to be impatient with my body. Why does it take so long to recover from a cold, the flu, or even a late night out? Why won't my bruises fade faster? Why can't my hair grow back sooner? Of course, as I get older, and more accustomed to life with lupus, I've learned that the body just takes time. To heal. To rebound. To regroup. And the less preoccupied I am with rushing the process, the faster it seems to go.

3) My daughter. I'm going to single out Bernadette here - because her sister Deirdre does a pretty good job of moving quickly. Bernie, on the other hand, cannot and will not be rushed. Trying to move my youngest daughter along - whether it's as she's getting dressed, buckling her seat belt, or eating her peas - is a very futile exercise. She wants to do things on her own time, and the more I push her, the more she resists. (And at age two, you know where resistance goes? Straight to a tantrum!) We're working on it, and of course, we try a new strategy every week. But for now, I've learned that if I wait the extra three minutes for her to do "X", rather than rushing her to do it in one, we all emerge unscathed. Usually.

4) My business. This point deserves a future blog post of its own, but for now, I'll just say this: I would love to grow my business. I would love to expand my lines of Pillbags, expand the reach of my book, maybe even write another one. And as an entrepreneur, I'm anxious to make these things happen. But as a lupus patient, a stay-at-home mom, and as someone who strives for balance in her life (and whose health depends on it!), I've learned to take it slow. Rushing the process, expanding too early, or spreading myself too thin won't get me any closer to my goals, and it would actually prevent me from reaching them in the long run.

So it turns out that slow and steady does have its merits, and I'm slowly learning to appreciate that fact. Let's just hope I remember that as the sea of boxes surrounds me on August 1st!

Wednesday, July 17, 2013

Another Friday Affair at Hollin Hall: 7/26 from 12-4pm.

I'm excited to participate in
another Friday Affair at Hollin Hall, set for next Friday, July 26th. Last month's event brought a wonderful array of vendors and customers together, and I'm looking forward to setting up shop again next week. The best seller at last month's event was the Pillfold Amelia, with the Pillfold Winchester
coming in a close second.

I wonder what July's Friday Affair best seller will be?!

Nothern Virginians: I hope you can make it. Details are below. Directions are here. See you there!

WHERE: Hollin Hall Mansion, 1909 Windmill Lane, Alexandria, VA  22307
WHEN: Friday, July 26th, 12-4pm
WHAT: Friday Afternoon Marketplace

Monday, July 15, 2013

"Despite Lupus" on Google Play and the Pillbags at Whispers of Heaven. How exciting!

I promised to unveil the latest spots to pick up my products a few weeks ago, but I got caught up in Fourth of July/Renovation shenanigans. Oops!

So here you are - the latest place to grab a copy (albeit an e-copy) of Despite Lupus, and a great new place to purchase a Pillbag (in person or online). I'm happy to be established with both companies!

First - the book. Johnny took it upon himself to set up Despite Lupus on Google Play a few weeks ago, and copies started flying off the virtual shelves immediately. I usually establish all of the new sales channels for DL headquarters, but I was thrilled that he took this one on himself. Depending on the day, I'm either drowning in packing boxes, renovation decisions, or both, and his help is very much appreciated.

Secondly, I'm thrilled that Sara Gorman's Pillbags are now available at Whispers of Heaven, a unique little store located in Dover, PA. They recently launched an online store that features the Pillbags and a great selection of gift items, including their signature fragrance candles, body scrubs, lotions, charms and other decorative pieces. You can even customize a gift basket for someone special...although I plan on stocking up on the Body Butter and Beeswax Lotion Bar for myself! April, the owner of the store, has a touching story to share about how the idea for the store began, and she's done a wonderful job of selecting just the right items to carry. I'm honored to be included!

Here's a glimpse of the lotion bar that I can't wait to get my hands on...literally! From the description, it appears that it's lotion in a bar form, and it melts like butter when you rub it between your hands. How fun!

Friday, July 12, 2013

Take a survey and raise some lupus dough!!

Got lupus? Take this survey!

My local chapter of the Lupus Foundation of America will receive a $20 donation for every qualified survey completed. I just took it, and it's an easy one. It takes all of five minutes, and it won't make you think too hard. It is Friday, after all!

I believe there will be follow-up surveys over the course of the following six months, so if you're game, give it a try. Just click here to begin! I kind of enjoyed taking stock of where I am in my lupus disease activity. In going through the questions, I realized that the fatigue I experience on a daily basis really does impede my activity and abilities a little more than I think it does. I act like the two-hour hiatus is no big deal - and I've learned to make it work - but it does hinder my productivity for sure. Maybe that's why I'm always behind on my to-do's!!

You can read more about the survey below:

Help the Lupus Foundation of America, DC/MD/VA Chapter raise funds by taking a quick survey today! Each qualified survey completion will result in a $20.00 donation to our Chapter. This survey will be open for the next 6 days only.

This research study is conducted by researchers in the Department of Medical Social Sciences at Northwestern University (Principal Investigator: Dr. Jin-Shei Lai; IRB STU#: STU79933). The goal is to better understand the symptoms, side effects, and quality of life of people living with systemic lupus erythematosus (SLE).

For this study, individuals with SLE will be asked to complete online surveys over the next 6 months. By repeating the surveys over several months researchers will gain new knowledge on how symptoms and quality of life change over time. This information will help researchers design better therapies for SLE and understand the impact of SLE therapies for patient well-being.

This study is a very unique opportunity to learn more about this disease. It wouldn't be possible without the support of SLE patients. You participation is greatly appreciated! 

Note that the above is provided for informational purposes only. This Lupus Foundation of America DC/Maryland/Virginia Chapter is not affiliated with this research.This is an independent study in which the Chapter is not responsible for the survey content or the outcomes of the research. Any questions or concerns please contact Northwestern University. 

Wednesday, July 10, 2013

Sunday: Truly a day of rest for this lupus gal

A couple of years ago, Johnny and I came up with a brilliant idea. Instead of returning from vacation  late on Sunday night, we chose to arrive home by noon, giving ourselves the afternoon to recoup, relax, and get ready for the week ahead. It was fabulous. We found ourselves thoroughly enjoying our time away, because we'd eased our way back into reality. Come Monday, we weren't trying so desperately to catch up. Instead, we were fresh and ready to go, allowing us to appreciate our vacation even more.

Since then, we've actually broadened our brilliant idea, when possible. We give ourselves an entire day to regroup, by returning on Saturday, rather than Sunday. We unpack, do laundry, sort mail - or sometimes, we just relax. It allows us to slowly transition from vacation to the real world...and in the midst of this renovation and a busy Pillbag season, I count on that day of rest.

I would have never guessed that cutting down on our time away would actually enhance the effects of the vacation itself. Conversely, who knew that maxing out our vacation time would actually diminishing the benefits of getting away in the first place?

I've learned the same premise to be true with lupus. I used to think that pushing my limits and maxing out my energy was the way to assert myself against lupus. I didn't want to feel held back by my disease, so instinctively, I thought pushing ahead was the best approach. I figured the harder I pushed, the more productive I would be, and the better I would feel about myself. But the exact opposite turned out to be true. The more I pushed, the worse I felt, physically and emotionally.

This poem I wrote that's included in my book sums it up:

The harder I push, the sicker I get
The sicker I get, the less I resemble myself
The less I resemble myself, the hard I push
to try and regain some semblance of who I used to be.
   ---Despite Lupus: How to Live Well with a Chronic Illness, page 85

I've learned the hard way that maxing myself out doesn't reap the benefits I want. In fact, on a daily basis, I find that more I give in and the less I push, the better I'll feel. If I'm tired, I rest. If I'm feeling sluggish, I pass on an errand. If I'm not thinking clearly, I skip a blog post. I realize the race against lupus is a long one, and there's no reason to sprint too early. I plan on lapping her many times in the future, but I can only do that if I take it slow and steady!

Monday, July 8, 2013

Back from vacation...almost.

I was out on vacation last week, enjoying the wonderful surf and sand in Ocean City, NJ. What a week!

We're home, and settling back in, but I'm still on blogging vacation. I'm sure by Wednesday, I'll be back in action.

Here are a couple of pics from our vacation. Enjoy!

Monday, July 1, 2013

Making life with lupus better, one hassle at a time.

One day a few weeks ago, as I was falling asleep during my afternoon nap, I made a little wish. It went something like this: "Someday, I wish that I could to take a nap whenever, wherever, and however I want. Independent of anyone or anything."

Well, now. That's a tall order, for the mother of a 4 year old and 2 year old.

This thought came on the heels of doing our daily 2pm napping routine - first, putting Bernie down for her nap (which involves the potty-before-bed/read-a-book/pick-a-barbie-to-snuggle-with negotiation), second, setting Deirdre up with a snack, drink, and a craft, third, making sure the door is unlocked and the house is ready for the babysitter to come in 30 min to an hour - and then, finally heading to bed myself.

I found myself dreaming about the days when the girls can go golfing with their dad, while I hang back and sleep. Or when Darwin and I have nap time to ourselves while the girls are in school full-time. Don't get me wrong - I cherish my little ladies. I know they won't be this age forever, and I know I'm going to miss it when they don't need me as much as they do now. But last week, I was wishing for a momentary reprieve.

So I got to thinking. How could I enable myself to have a nap that's a little more hassle-free? Do I have any options?  After a few moments of brainstorming scenarios, I dismissed the thought. In order to make it happen, I'd have to alter my babysitter's schedule, change the time I take my nap, or both, and I decided I was too exhausted to think about it further. And off to sleep I went.

I didn't give it much more thought, until last Friday, when I had The Friday Affair at Hollin Hall. I came home at 2:45pm, after working the first part of the show, only to find that there'd been a mis-communication with my babysitter. The napping routine hadn't happened yet. In fact, it hadn't even started! (Not her fault - ours.) My first thought, of course, was to jump in and get things rolling myself. But my second thought was this: maybe this is my wish come true? Could I actually off-load today's napping routine to the babysitter and just

I seized the opportunity. I told Bernie and Dee it was rest time, and that the babysitter was going to take care of it. They protested, I insisted, and eventually, the babysitter took over. (I admit that I gave in a little bit - I read Bernie the shortest story in the world, and set up Dee with a potential snack, to be administered when the babysitter came back from putting Bernie down.) But from there, I went straight to bed. No haggling, no negotiating, no hassle. It was glorious!

So now I know - it's not that hard to make happen, the girls (in the end) welcomed the change in routine, and going to bed when I want to really IS that much better. I'm going to revisit my options in the coming weeks to see how truly hassle free my afternoons can be. What I thought was a goal for down the road might just be something I can achieve now. I wonder how many other hassles I've learned to deal with, when in fact there might be easy solutions. Have any success stories yourself? Feel free to share!