Friday, October 26, 2012

Whew! I think I'm going to make it!

The end of the month is upon us, and I think I'm going to make it. If you remember, the month of October was a busy one for me. Despite the fact that I reworked my commitments multiple times, in an effort not to "overdo", I still had a lot on my plate. But the month has come and (almost) gone, and I've lived to tell about it.

Our move into our rental house is slated for Tuesday, the 30th, and we're ready. At least, as ready as you can be for a move from one house to another half its size, with a 2 and 4 year old in tow, a pug dog, and two home businesses. The trickiest part was deciding what goes to the rental house, and what gets packed into a pod in our driveway for the duration of the construction. When you're separating your belongings in such a way, trying to take with you as few things as possible due to limited space, limited time, and convenience factor, you realize how few items you really need to function on a daily basis.

For example, half of my kitchen stuff is packed away, not to be seen again for six months. And more than 2/3 of the girls' toys have been packed away for a week or two, and to date, they haven't missed a single thing. Those toys will stay out of sight and out of mind for six whole months, and if I have anything to say about it (wait a minute...I DO!), they'll go straight to the donation pile upon our return. I didn't want to be too hasty in tossing toys as I was packing, because Bernie is only two, and I know there were things in those boxes that Deirdre loved to play with during her 2's and 3's.  But the boxes of toys we DID cart away, I felt good about, and we'll always have the opportunity to donate the rest upon our return. I think my pre-sorting will pay off.

What has already paid off is the help we received from my dad in the packing department. My sister orchestrated his visit from Indiana, thank goodness, because I don't think I would have gotten around to asking him to come out. I just didn't think we were going to need the help. I thought we had it covered, and I suppose we might have been able to do it. But because he showed up, ready and eager to help, we didn't have to find out. He came out and packed for the better part of three or four days, (minus story time with the girls and all the rest). so that means I could still nap, I could still go to bed at a decent hour each night, and I could relax, knowing I would have help the following day. I didn't have to push myself, and Johnny didn't have to miss work. We didn't have to worry that the move would make me sick - or that too many things would be left to the end. With my dad's assistance, those worries were instantly eliminated. And the alleviation of that stress was a lifesaver (or should I say a "flaresaver"?)

He packed while I napped, he packed while I shuttled around the girls. He packed without complaint, and with the meticulousness that is priceless. And we had a good time spending time side by side - good old Dad helping out his youngest daughter...again.

So why didn't I ask? I knew he'd come if I asked him. In fact, he'd volunteered to do so multiple times over the past month. But you know how it is - you don't want to burden someone else with your workload, you don't want to worry about how little they'll think you've accomplished, or offend them by how much you're asking them to do. You think it's more trouble than it's worth to ask, and most importantly, you convince yourself that even if you could use the help, you should be able to do it yourself.

And those "shoulds" are always the guys that get lupites into trouble. Sure, we could do it on our own, but why? If help is readily available, we need to accept it. If a little assistance will ease our life with lupus, and increase our chances of being healthy, why not set ourselves up to succeed? Maybe you've been able to accomplish "X" on your own in the past. Maybe you know just how you'd like "X" done, and you don't trust anyone else to do it. I'm here to tell you - you're not going to get the chance to do "X" if you keep on ignoring the help, and pushing yourself beyond your limits.

So I thank my sister and my dad for setting me up to succeed. They made me look like an all-star mom, wife, and mover, because a) I'm healthy, b) the house is packed, and c) I'm ready to tackle the weeks to come.  I've sacrificed nothing, and gained everything. A win-win all around!

Wednesday, October 17, 2012

Living well with lupus is supposed to feel good...naturally!

I have been on a baking frenzy for the last month or two, and I've enjoyed every single minute of it.

I LOVE to bake...it's my favorite hobby/pastime, and although I don't try as many new recipes as I used to, I make a batch of something at least once a week. Throw in a handful of birthday cakes, some quick breads, and a pie now and again, and you've pretty much described my kitchen's activity. I baked over 10 batches of cookies last month, for example...and sampled my fair share along the way.

Interestingly, though, I didn't smell a single one. If you recall, I've never had a sense of smell, though I was tested and retested when I was a kid. When I bake, I'm attune to what the batter looks like, and what the baked goods taste like. But the smell? I couldn't even take a guess as to what a cookie, for instance, should or would smell like. I don't know if it's a sweet smell, a rich smell, or a comforting one. Frankly, I don't even know if those are the correct terms to describe a smell!

But I realize I'm in the minority. Over the past two months, more than a dozen people have walked into my house, and immediately commented on the wonderful smells wafting from the kitchen. The moment they catch a whiff, they're compelled to say something. Which is just so amazing to me...because of course, I smell nothing. The air around me doesn't have a "hint" of anything, and the smell of cinnamon or chocolate doesn't make my mouth water. But because I've never known what it's like to smell those things, I don't miss it at all. It's not even a consideration.

Over time, I found the same to be true about many of the accommodations I've made with lupus. Shielding myself from the sun, incorporating naps into my afternoons, refilling prescriptions month after month - these things are simply my way of life now. I've learned to expect them, and they're habitual. I'm no longer sacrificing - I'm just adapting.

And that's what living well is supposed to feel like. Living in concert with your illness so that you don't have to try so hard. Feeling as though this is the way life's always been...and that way is okay. It doesn't come immediately, and there are definitely stages along the way that don't feel quite so natural at all. But you'll learn areas of life to focus on, and aspects of yourself to develop, in order to make that thing called living feel natural again.

Just like I've come to focus on and develop, not my sense of smell, but my taste, sight and touch in order to thoroughly enjoy each and every one of my culinary delights. And enjoy them, I do.

So if not being able to smell seems like the most natural thing in the world to me, just imagine the possibilities for yourself!


Monday, October 15, 2012

You don't know if you don't try.

I'm pleased to say that the girls reached a couple of milestones last month: Deirdre learned to ride a bike, and Bernadette is potty-trained. They're both doing quite well, and are thoroughly enjoying their new found "freedom".

We didn't intend to tackle either of these issues last month, as we certainly had enough on the docket already. But after Johnny popped the tire on Deirdre's balance bike (our pre-cursor to a big girl bike) when he was pumping it up, and because Bernadette had been going on the potty two and three times a day since August, it was just time.

I had my reservations, mind you. I thought Deirdre might be a little small to ride a big girl bike...and I wondered if I was ready for her to be so mobile. And although Bernie seemed ready, I was worried that if I pushed for potty-training too soon, she'd resist, and eventually revert. And I didn't want to jeopardize the progress she'd made on her own. But in both cases, I figured we wouldn't know until we tried. So we tried, and they succeeded. Thank goodness!

This concept of not knowing until I try seems to be a recurring theme in my life with lupus, too. I can think of several instances over the years when I've uttered those exact words - or someone's uttered them to me - in regard to my options for living well, despite lupus.

One of the first came when I was deciding whether or not to start Cellcept. Back then, I was worried about the known side effects, about postponing my plans to get pregnant (because the drug isn't safe for pregnancy), about starting a drug that, in my mind, was a big gun, and about whether or not it would even work for me. But in weighing the decision, I decided I wouldn't know any of the above, if I didn't try it. If I passed on the drug, it would always be a "What if...", and I already had enough of those in my life with lupus. So I tried it, and had great success. It was, in fact, a miracle drug for me, and served as a real turning point.  I'm so glad I took the plunge!

Another time I recall these words coming into play was when I contemplated a reduced work schedule at the office. I was incredibly reluctant to approach my company about working less. First, I had no idea if it would  have any impact on my quickly declining health or not. Second, I didn't know if a reduced work week was even allowed, given the management position I held, and I was nervous about losing my job, not to mention the insurance they provided. Third, I struggled with what it would mean for my career, my long-term goals, and my identity as a successful, driven young lady. Who I would be? What would I do if I couldn't work? Would I like it? I decided I'd never figure it out if I didn't try. So ask, I did. And accommodate, they did. You can read about my work history here, but long story short, asking to work one day from home was one of the best moves I've made in attempting to live well. It gave me the perspective I needed to separate myself from my working identity, and to once and for all, admit that less stress, less commute, and fewer hours were better from my health.

One of the last times I recall uttering these words was in regard to starting Plaquenil for the second time. I'd stopped the drug about three years earlier because I'd experienced that rare retinal issue with the drug. That was the primary reason I came off of it. But secondarily, my doctor and I agreed it was time to try something different, since the combination of Plaquenil, prednisone, anti-inflammatories, etc, etc. wasn't enough to keep my lupus under control. Thus, I started Cellcept, and you know the rest.

But after three years on Cellcept, I was ready for a new phase - a family phase, in fact.. My health was so good, I felt it was the right time to start trying for a baby. As always with lupus, I had some precautions to take and changes to consider, one of which was finding an alternative to Cellcept. My doctor recommended we try Plaquenil again, but I had reservations. Sure, my eyes had returned to normal, and my opthamologist felt it was safe to try, but my eyes weren't my only concern. The last thing I remember about being on plaquenil was that my disease was out of control. I'd worked so hard to get healthy  - the last thing I wanted to do was jeopardize that stability and ruin my chances of even trying to have a baby. What if I got sick? What if it meant I had to postpone pregnancy even longer? I decided I wouldn't ever know until I tried. And try I did, again, with great success. Five years and two babies later, plaquenil is still doing the job. And my eyes look great...at least, as of today. (I've learned not to get too cocky with lupus!)

Friday, October 12, 2012

A lupus patient's definition of "doing nothing"

In looking back over my posts regarding my mini-flare, I think I've learned something. My definition of taking it "slow and easy" is kind of a joke. Don't get me wrong - I DID take it down a notch while I was under the weather. I had to. But my definition of ratcheting back and having a slow and restful week is a bit of a misnomer. I still did everything I had to do - took care of the kids, dropped off Deirdre at school, picked her up, made lunches, put the girls to bed for naps, picked up the house, paid bills, stopped at the grocery, picked out baby and birthday gifts for friends, went to the post office, blogged, etc., etc., etc. Johnny was a HUGE help - and I couldn't have gotten through the week without him. But it is mildly amusing to look back and realize that when I say I did "nothing", as a mom, a business owner, and a writer, I did the least amount possible, which is still a whole heck of a lot.

And I'm sure most lupites are with me on this. In my travels around the world and across the country, speaking at various lupus events and book signings, the folks I've met with lupus are anything but the "sit back and relax" type. They're go-getters, they're fighters, they're women (and men) who take charge, take action, and get results. Many of them are parents, a slew of them have careers, and all of them are determined to figure out how to live well, despite lupus.

So what can we learn from this? Perhaps this driven, high-achieving group can take heed, and realize that their definition of "downshifting" might look like other's "high gear". Perhaps we can learn that taking time off to rest, relax, and truly do nothing is an okay thing to do. And that we'd actually look and feel pretty good doing it, even if just once in awhile.

So I invite you to try it some time. Who knows? We might just enjoy life in the slow lane. Most likely not, but it won't kill us to dabble!

Wednesday, October 10, 2012

Goal setting - this time, to help gauge lupus activity

I recently came across another wonderful story in Guidesposts Magazine, this time about a woman making her way through the pain and frustration of physical therapy after a car accident. The story goes that at the recommendation of her trainer, she employed the use of goal-setting to help with her rehabilitation. I'll let you read the inspiring story here, but here's what hit home for me.

In the wake of my frustrating, devastating (albeit short-lived) disease activity about two weeks ago, I decided to make some goals. Goals to keep me on the straight and narrow- so that I didn't fall into the trap of just pushing through, and, equally as important, so I didn't despair. I needed to come up with benchmarks that would motivate me, but that didn't interfere with my recuperation. Things like, "Go to bed immediately after kissing the girls goodnight" one day, or "Resist the urge to make dinner" the next were productive, attainable goals that I could focus on.  Almost like a reverse "to-do" list, in fact. Instead of listing tasks to be done, you list things that ease your life with lupus, anything to make it easier to cope with the symptoms you're experiencing.

I also found that because I had a fun and exciting weekend looming (we were throwing the girls a combo birthday party), I wanted to set a single, long-term goal to aspire to - something that I could only achieve if I behaved myself, rested, and did the least amount possible during the week. This longer-range goal looked more like "Be able to participate in the girls' birthday party". Sure, I was taking a risk by declaring such a goal - but inspired by the story mentioned above, I felt it would only motivate me to do what was needed to be done (which, in this case, was as little as possible) during the week so that I be there for the girls on the weekend.

Note that because lupus has a mind of its own, I made sure I didn't make that long-term goal something like, "Make the girls' birthday cake." If I had, I would have backed myself into a corner, and been pretty darn disappointed, if in fact, I wasn't able to make their cake. (Actually, a good daily goal might have been "Mentally prepare to buy a store-bought cake, if necessary"!)

But my goal-setting paid off. I literally stripped away all to-do's that didn't have to get done the week of my mini-flare, and by Friday afternoon, I felt pretty darn good. Good enough to bake my ladybugs' Hello Kitty cake, good enough to leisurely help them stuff goodie bags for their friends, and good enough to map out where their decorations were going to go. I went to bed super early, and woke up Saturday morning rested and asymptomatic, just as I'd hoped. I didn't go crazy the day of the party, either - and got a good long nap in the afternoon. I even passed on a Doggie Happy Hour I was hoping to take the girls to that evening. I knew my luck (read: energy) had just about run out!

And boy, am I glad that brush with fatigue, swelling, and all the rest is over for now. As mentioned in a previous post, I'm still easing my way back to a normal level of activity. I've passed a day here and a day there on packing for the renovation, and I've even contemplated bringing my dad in to help us finish up what's left to be done. My family's all for it...now to put the Gorman Family pride aside and ask for the help! 

Tuesday, October 9, 2012

Pillbags are stylin' in Minnesota

Ooh La La! Savvy shopping indeed! Check out the latest mention of the Pillbags on Savvy.mn...which is THE go-to style blog for Minnesota! Thanks, Land of 10,000 lakes!

Monday, October 8, 2012

Another fabulous night on the town - S.L.E. Annual Gala in NYC!

The guys at S.L.E. Lupus Foundation in NYC sure know how to kick up their heels...and for a good cause, too! 

Check out their upcoming event coming up in November - the “Life Without Lupus Gala 2012: Turning Lupus Research Upside Down”.

As the organization says, "this year’s black tie event celebrates the novel and innovative science that is turning the tables on lupus. Board member Fern Tessler and her husband Lenard will be honored for their outstanding leadership in advancing innovative lupus research! During the event, guests will be swaying to Gershwin’s classic ‘Summertime’ when five-time Tony award winner Audra McDonald takes the stage. A star of television, movies and the theatre, Audra was just recognized as 2012 Best Actress in a Musical for her starring role in Porgy and Bess. "

While tickets might be out of your own price range, perhaps your company is interested in getting involved with the cause. Never hurts to ask! 

Honorary Chairman: Honorable Mayor Michael Bloomberg
Host: Willie Geist, Co-Host MSNBC Morning Joe

Over 600 guests are expected to enjoy a full program and sumptuous dinner served by Caterer Restaurant Associates, the official caterer for the Museum. A live auction will allow participants to support specific patient programs or a particular piece of cutting-edge research at many of the most renowned institutions in the world.

Date and Time:
November 19th, 2012, 6:30pm-10:00pm

Location:
American Museum of Natural History, NYC
Central Park West at 79th Street

Ticket Prices: Individual Tickets Start at: $1,200. Click here for more information. 

About S.L.E. Lupus Foundation:
The S.L.E. Lupus Foundation is the country’s preeminent organization delivering direct patient services, public education and novel research at a national level. Founded 40 years ago in New York City by lupus patients and their families as the first nonprofit to serve the lupus community, it remains the cornerstone of comprehensive care in all five boroughs in the continuous battle for a Life Without Lupus.

Contact:Sarata Kaba.
Phone: 212-685-4118 x40
Website: www.lupusny.org

Friday, October 5, 2012

My lupus fatigue defined

Wow. That nasty little thing called lupus fatigue is a bear! As mentioned in my post on Monday, I had a bit of a flare-up last week, including joint pain, swelling, and fatigue, and I'm not going to lie to you - I'd forgotten how bad that fatigue can be.

Thankfully, the join pain and swelling I experienced wasn't awful. It was confined to one hand, and it was more annoying than painful. These days, one or two swollen digits actually serves as a pretty good warning sign for me - a signal that although more involved disease activity is brewing, if I act quickly, I might be able to stop lupus in her tracks. I just immediately have to scale back on my activity level, majorly ramp up on my sleep, and usually, I can prevent the disease from going any further. And per doctor's orders, an extra dose of 5mg of prednisone usually helps, too. (Please be sure to check with your doctor before altering your medication!)

But this time, the effects of lupus went deeper, and I wasn't prepared. The fatigue came out of nowhere - that overpowering, debilitating, "I'd rather not talk because it takes too much energy" kind of fatigue - and it's been years since I've experienced that.

Of course, I experience some level of fatigue every day around 2pm - but my nap seems to preempt that fatigue from becoming exhaustive and disruptive. As I was reminded last week, a real dose of lupus fatigue makes it difficult to walk, talk, or even think. For most of two days, I felt weak and slightly disoriented, making it preferable to sit rather than stand. I didn't want to engage in conversation, and it was difficult to make even the simplest of decisions. And I felt deflated and drained, as though my body was completely devoid of energy.

Now, before I end up writing a short dissertation on lupus fatigue, how about I just list a few snippets from my week, and see if anyone out there knows what I mean:

I felt so limp and lifeless at one point, it felt unnatural to lift my hands to hold the steering wheel. They just kept drifting down to my lap where they could rest.

I felt as though my vision was blurred - like there was a film coating my eyes preventing me from being able to focus visually. My eyes were grainy and a little itchy, too - not like allergy-itchy - more like sand-in-my-eye kind of discomfort.

It was difficult to muster up the energy to concentrate to read or write. There was even a sort of delay when interpreting short lines of text, commands, or requests (i.e. "Mom, can you help me with 'x'?")

Forming sentences seemed to be a difficult maneuver, too - I actually had to pause before I spoke - and I was anything but articulate.

Remembering things from 5 minutes ago was taxing, much less a day ago.

I moved in slow motion from the moment I woke up until the moment I went to sleep. I just couldn't get any momentum going, and it kind of felt like I existed in a thick fog that followed me everywhere.

I upped my naps to two a day at one point - and it still wasn't enough. I woke up just as tired, and even more disheartened, because of how tired I was.

One evening, Johnny asked me how my "processing power" was before he launched into some questions about some upcoming travel logistics, and I'm glad he did. I was in no shape to think critically, problem solve, or even engage in deep dialogue - so we held off the conversation until I was feeling better.

I felt very disengaged and disconnected, as if  I could see a version of myself moving around the room, doing things and carrying on at a normal pace. And while I wanted to be doing what I saw this efficient version of my self doing, there was no chance of mustering up the energy to even begin to move as quickly.

Lastly, the tell-tale signs that disease activity is upon me, is that I wasn't hungry, and I wanted to close my eyes whenever my body wasn't in motion.

So - there you have it. A very rudimentary, off-the-cuff description of what my lupus fatigue looks like. Anyone want to compare notes?





Wednesday, October 3, 2012

October Charity of the Month: Lupus Foundation of Minnesota!

It's the start of another fabulous month here at Pillbag Headquarters, and with it comes a new recipient for our Pillbag donations. During the month of October, for every pillbag sold, 5% of the sale will go to the Lupus Foundation of Minnesota. I've had the pleasure of working with Lupus MN over the past few months regarding details of the event, and they've truly embraced the fundraising effort. Check out the snazzy flyer they designed to spread the word. (All rights reserved.) You can also check out more of the designer's work here - Michael Nelson at “A Girl Named Michael”.


Monday, October 1, 2012

The pain of doing vs. the pain of NOT doing


I wish it weren't true - but I can't act like it isn't: I had swollen fingers and joint pain in my hands this past week, plus a wave of  fatigue that couldn't be ignored. Bummer! It really should come as no surprise, given all of the action items I have planned for the next few weeks. You can read about my Fall schedule here - keeping in mind that I've already slashed several events from this agenda in order to get several weekends off. But, despite my efforts to manage life with a chronic illness, sometimes, lupus activity can't be sidestepped completely. And such is the case this time.

That said, when disease activity strikes, I find I have two choices: push through it and act like it's not there (which is a very bad strategy), or take a few days off to recover, and then ease back into a normal, yet scaled back routine. And because I know those of you who read this blog expect only the best from me, I'm doing the latter. (Truth is, I expect the best of myself in these matters...but it always helps to know that there are a slew of readers that I'm going to have to answer to if I don't choose wisely. Two of whom are my mom and sister. Yikes!)

So last week was a very slow and restful week here at Gorman/Pillbags/Despite Lupus Headquarters. In fact, the day I woke up with the swelling and pain, I had three major things to accomplish: laundry, switching out the girls' summer clothes for fall clothes, and packing up the remainder of the kitchen. And as much as I hated to see the day come and go without touching any of them, that's what I did.

It was agonizing to know that the day before, when I was symptom-free, I would have had two of the three accomplished before noon, with the third being tackled soon after that. I hated to think about the 40 or so boxes I had scored over the weekend from a neighbor going to waste. It killed me to picture Deirdre going to school in yet another summery frock. And the thought of just letting the laundry sit in the dryer, getting so wrinkled, some things would have to be re-dried, was horrifying. But I didn't touch a thing. And it was a good decision.

The next day I felt better, but still not great. By the third day, I could see major improvement, and by the fourth, I was in the clear and symptom-free. Thank goodness! I'll be sure to share all the gory details of my symptoms later in the week. But for now, I'll leave you with the image of me sitting back, twiddling my thumbs, as I waited for lupus to run its course. I gave her no ammunition along the way - I gave her no cause to rage longer than necessary. Instead - I did everything to force her to disengage, letting the emotional pain of NOT doing roll right off my back. And thus, my physical pain subsided accordingly. Let's hope I learn not to tempt fate again!