Friday, August 31, 2012

The juggle is on: making time for lupus in a hectic schedule

I have some juggling to do. On the heels of my post on Monday, announcing my upcoming appearance with the pillbags on September 24th, that fundraising event kicks off a whirlwind of activities here at Despite Lupus/Pillbag headquarters. Here’s how my fall is shaping up:

9/24 - Rock Paper Cocktails Ovarian cancer fundraiser in Alexandria - set up shop with Pillbags
9/29 - Bernie and Deirdre's birthday party - which wouldn't be complete without our 20 closest neighbors.(Note that we don't even invite Dee's school buddies - neighbor kids only and our two beloved local cousins.)
10/5 - 10/6 - To Philadelphia to give LFA Lupus Symposium Keynote
10/10 - Meet with local retailer about Pillbags
10/11 - Back to Philadelphia for a bridal shower
10/19 - To NYC to make a Pillbag sales call to retailer - only day available.
10/26 - Back to Philadelphia for my niece's confirmation - for which I'm the sponsor. I'm so honored!
10/27 - Fly to Nashville for bachelorette party
11/3 - To Baltimore for LFA Maryland Annual Lupus Symposium to set up Pillbag shop
11/14-11/17 - To Los Angeles for wedding

Whew. That’s a lot of stuff to pack into just a few weeks. This list, of course, doesn't include the doctors' appointments, meetings, school events, and all the other stuff I have littered throughout the month, nor the fact that Johnny's traveling two of the weekends mentioned above. In addition, October is the month we're supposed to move out of our house into the rental. Yikes!

So before I say “yes” to all of these events, I have a little noodling to do. Can I do it all? Should I do it all? Am I putting my “living well” status in jeopardy? And what can I do to make sure I don’t overdo? 

First things first. Like any high-achieving, driven, pushaholic, I want to do it all. When I look at this list, I see one commitment after another that screams, “Do me, do me!” I don’t see a single event that I want to sacrifice. I desperately want to make them all happen. 

So I have to approach it another way. Instead of asking myself, "What has to happen", I have to ask myself, "What doesn't have to happen?" I have to eliminate the lowest-hanging fruit first...then make the harder decisions after that, if necessary. I have to remind myself that life will go on, whether or not I make most of these events in the first place. Sometimes it's hard to admit that I'm dispensable...but in this case, it's a good reminder that a list of to do's is really just a list of words on a page, and nothing more.

Of course, before I eliminate anything, I want to consider logistics. As you can imagine, with each out-of-town event, there’s a logistical laundry list of stuff to consider – mode of transportation, travel times, nap times, sleeping arrangements, etc. etc. When I find myself with back to back events like this (as I did at the beginning of last summer), I find it beneficial to map out the details of each event to which I've already committed. That way, I can see how the days surrounding those events need to shape up - and how much other stuff I need to clear away in order to give myself a moment (or even two) to breathe.

So this is my homework for the weekend. Figure out how these dates are going to fit into my life with lupus, and make a plan to try and ensure that they don't take a toll. I'll keep you posted!

Monday, August 27, 2012

Rock, Paper, Cocktails - Sept 24th in Old Town. See you there!

Can't wait to set up shop for an upcoming fundraiser - Rock, Paper, Cocktails - scheduled for Monday, September 24th in Old Town Alexandria. A retailer who carries my pillbags suggested I participate - she says it's a rocking good time. I'm looking forward to it!

I'm joining a dozen other vendors for the event, and a portion of our proceeds will help fight Ovarian Cancer.  As you can see, I've decided to spread the wealth of my charitable donations - but what a great cause!

Join me if you can - the event runs from 6:30 to 9:30pm at the Hotel Monaco on King Street in Old Town. I'm lucky enough that my mom will be in town, so she can help man the booth. Be sure to stop by, meet my mom, check out the pillbags, and enjoy a fun night out on the town!

Rock, Paper, Cocktails!
Rock Paper Cocktails

Hotel Monaco in Old Town, Alexandria
480 King Street 
Alexandria, VA 22314

Monday, September 24, 2012 from 6:30 PM to 9:30 PM (EDT)



Friday, August 24, 2012

Shannon Boxx - Another inspirational story!

I had the pleasure of seeing Olympic soccer player (and fellow Notre Dame graduate) Shannon Boxx present an award at the Lupus Gala this past spring. Boy, did she look impressive up on that stage! She was in the best shape of anyone in the whole place - and it was so cool to know that despite lupus, she was and is an amazing athlete. What an inspiration!

My sister-in-law kindly forwarded me this interview with Shannon Boxx from CNN Health, and it's a great article. You can read the entire interview here, but I love the part about why she's recently come out about having lupus. She sets the bar for all of us - if SHE can get out there and talk openly about her disease, so can we!!


QUESTION: You've just begun to talk publicly about your battles with autoimmune disease. Why did you decide to start sharing your story?
BOXX: I kept my story a secret for a long time because I didn't want anyone to use it against me in my profession. As I am nearing the tail end of my career, I have realized it is a lot more important to use my voice to help bring awareness to lupus and Sjogren's.
It takes people an average of seven years to be diagnosed, and in that time period they could be doing more damage to their body. If I can help spread the word about what lupus or Sjogren's is and what the symptoms are, maybe I can help get people in to visit a doctor sooner.

Wednesday, August 22, 2012

Lupus tools - Arm yourself well

We recently bought a new vacuum cleaner, and it's heavenly! We went crazy and purchased a lightweight, yet heavy duty upright vacuum (read: expensive), and it has changed my life.

Yup - it ranks right up there with the experience I had when my new washer arrived. Read my reluctance to pull the trigger on that appliance purchase here, if you wish. But just know that I am slowly learning my lesson and realizing that it really pays to upgrade your appliances when they break.

To start with - my old vacuum was heavy. It was hard to push, hard to haul up and down the stairs, and hard to turn because it was anything but flexible. At least one of the rollers was broken on the bottom, so it dragged on the carpet almost like a suction - so moving it back and forth was a very painful process. It took twice as long as it should to vacuum a room, and the hose attachments were almost all broken. Vacuuming my house, to say the least, was not an enjoyable task.

But fast forward to my new vacuum - it's light, and easy to handle, with all the flexibility of an extension of my arm. It cuts my time in half (literally - I timed it), and because the head of the vacuum is so small, I haven't had to use an attachment yet.

So with one purchase, I have transformed the chore of vacuuming into something that actually isn't much of a chore at all. At least - my hands don't hurt after using it, my back isn't sore from lugging it, and the time it takes to vacuum isn't wasted.

I look back on the years of using my old vacuum, and I can see how I was literally handicapping myself. I didn't have the tools I needed to get the job done - so as is often the case, the job wasn't done at all. Today, my house is cleaner on a daily basis than it's been in a long time, simply because I'm willing and able to carve out the 7 minutes it takes to vacuum the main areas - no pain required.

This concept of handicapping myself reminds me a lot of my old days with lupus - the days when I wasn't taking advantage of the tools I had at my disposal. Instead of utilizing my resources, I would try and hold out for as long as I could, thinking it was building stamina or resistance. I would just grin and bear it, when what I was doing was literally handicapping myself so that life with lupus was harder than it had to be. When I think back, the tools I wish I'd utilized from the beginning are as follows:

My doctor - I was always reticent to call him when something was wrong. Maybe I thought he'd "break up" with me, maybe I thought he'd be mad. Whatever the reason, I held off on calling his office way too often. Now I know - from experience - that it never hurts to phone the doctor. The worst they can say is that they'll see you at the next appointment. The best? "Let's have you come in today."

My spreadsheet - You know I'm a fan of tracking my disease activity, but I didn't always keep a spreadsheet. I kept it "all in my head" for way too long, and I wish I hadn't missed out on the opportunity to see in black and white, what was going on with my disease. Had I started earlier, I probably could have identified patterns, consequences, and cause and effect relationships that much sooner. I found this to be an invaluable tool that still helps me today.

My downtime - I definitely underestimated the value of rest. I had myself convinced that it was much better to cram as much as possible into a block of time, rather than break it up into smaller, more manageable increments of time. I felt as though lupus was robbing me of time - as if I didn't do something sooner, I wouldn't have any energy to do it later. But it turns out that it's the exact opposite. If I give myself time to rest in the middle of a string of activities, I'm able to last much longer than if I'd just gone full steam ahead. I don't run out of energy at all; I actually gain energy while resting and my productivity increases tenfold. Or so it seems.

I think the biggest difference is that by breaking up my activities with rest, I no longer have to account for the loss in productivity during the hours when I'm pushing through to the end - that time where I've lost the ability to think clearly, speak articulately, or act responsibly. Resting allows me to avoid those moments altogether - because I'm simply sleeping before I get there!

These are just three of the many tools I've used along the path to living well. I could go on - listing everything from Babysitters to Medicines to Good Grips Kitchen Utensils - but I'll stop here and open it up to the floor. Any handy-dandy tools in your toolbox that, today, you wouldn't want to go without?







Monday, August 20, 2012

Phone Call flashback

I had a doctor's appointment last week with my rheumatologist. It went well - as all of my appointments have for the last few months. I'm healthy, feeling good, and relatively symptom-free, aside from the fatigue and raynaud's that I experience, which I'm learning to deal with.

Because my appointments are so uneventful these days, I no longer have to take time to prepare my questions the night before, nor do I "rehearse" my conversations on the way to the doctor. Nope - these days, I just wake up the day of, double check the time of my appointment, and saunter into the office without much worry at all. What a privilege!

In fact, I was so carefree about last week's appointment, I hadn't noted the exact time of the appointment. I had in my head that it was a 10:45am appointment, but I had it down for 11:45am in my calendar. Stumped, I decided to give a call to the doctor's office to confirm. I casually waited until after 9am when they opened, but upon dialing, I got a busy signal. I tried again, and still a busy signal. Third time - still busy.

As I started to dial a fourth time, I had a bit of a flashback - an anxiety-ridden, panic-stricken flashback - back to the days when calling the doctor meant I was sick, desperate, and in pain. I remember oh-so-well counting down the minutes until the doctor's office opened on a Monday morning - struggling to dial the phone number while praying that they'd have an opening. Back then, to get a busy signal would have been disastrous. I would have panicked that the office was closed, or that my doctor was out of town, or that the phones were ringing off the hook and their morning appointments were filling up. I would have broken down at the thought of having to endure even just a few more hours of immobilizing pain, and tears would have streamed down my face as I realized that any assurances of relief might just be out of reach for the day.

But then I remember that's not today. Today, that busy signal doesn't faze me. It's just another 10 seconds to hit "redial", and I think nothing of it. I'm thankful for this indifference, and appreciate the lack of dependency that currently exists between me and my doctor.

Being well is a wonderful thing, and I feel like I've earned it. There's not one day that I take it for granted, and moments like these remind me how important it is that I continue to choose well, despite lupus.

Friday, August 17, 2012

What I did on my summer vacation

The girls and I were lucky enough to spend a week at Grandma and Grandpa's house in Indiana earlier this month - and we had a blast! We went fishing and swimming in the lake where I grew up fishing and swimming, with Papa teaching the girls the correct way to thread a bee moth (or wax worm) onto the hook...something every city girl three and under needs to know. 



We also visited the Exotic Feline Rescue Center, less than an hour from my hometown, which my family and I never knew existed until this month. It was incredible! You can see how close we were to the big cats - I still can't believe we were within fingertips of these enormous animals. The one in the picture directly below weighs more than 650 pounds - definitely more than Deirdre and I combined. (Perhaps that's why she's flinching a bit at being in such close proximity!)


The guy in the next picture is Rodney, who was a real sweet heart. When I told him I wanted to scritch his tummy, he literally rolled over like this. Cute, huh?  
  

And this last picture is my gal Zoe, the one who stole my heart. She will, ahem, be receiving a Gorman Family sponsorship this fall.  Seriously, she will. 

Of course, we weren't fooled by how lovable these cats appeared. We saw over 100 big cats in the 30-45 minute walking tour we took, and it became very clear that these cats were not to be messed with.

Without a doubt, the girls had a great week, and I did, too. Of course, the most important thing I did on vacation...was rest. My mom and dad went to great lengths to make sure I got my 2 hour nap each afternoon. There were a couple of days when we pushed our nap time a little later than normal - and I was quickly reminded of how detrimental that can be. You know how it goes - you're on vacation, you're doing fun things, you're going fun places - you just lose track of time. But letting an extra 30 or 40 minutes of fatigue creep in really wasn't worth it. Thankfully, I recovered after the requisite nap, but I just don't like getting overtired. It's interesting - while the girls seem to catch a second wind, I just dwindle deeper and deeper into exhaustion-ville. Thankfully, it's a place of which I'm not a permanent resident!

Learning from my mistakes (which is the most important part of living with lupus), I made sure that we ratcheted our naps back to the standard 2pm. And a good thing, too. On one of the last days, my mom had an emergency doctor's appointment (although she's fine now...thank you for your concern), and my parents were gone for an entire afternoon. But the Gorman girls rallied, and Deirdre and Bernadette watched movies and/or slept for over two hours, respectively. I had one of the best naps of the week - but I'm not fooling myself into thinking that I no longer need a babysitter. It would be easy to make such a conclusion - but I'm not a new lupite on the block. Sometimes, things don't go quite so smoothly.

And although I'm sure Zoe would be a fine nanny, I think we'll stick with the standard neighbor-girl variety babysitter!

Monday, August 13, 2012

The truth hurts…but so does too little sleep


I’m struggling to admit that Bernadette’s sleeping habits have changed. She’s always been a good sleeper, and aside from the few weeks when she was giving up her morning nap about a year ago, she’s slept well beyond 8 or 8:30am for as long as I can remember. But suddenly, she’s adopted a 7am wake up call – and I wish it weren’t true.

And unfortunately, I’m acting like it’s not. I haven’t adjusted my scheduled because I don’t want her 7am wake ups to stick. I figure if I hold out, maybe it will just become a passing phase, and I’ll return to sleeping until my beloved 8am.

But I’m only fooling myself. With an 11pm bedtime, I'm handicapping myself with only 8 hours of sleep, rather than my required 9. In fact, the longer I go with too little sleep, the more fatigued I become overall. I haven’t woken up rested once since she’s been on this early kick, and it’s just because I’m too stubborn to adjust my routine.

Why do we do that? Why don’t we listen to the signals our bodies send, and react accordingly? This is about as simple as it gets – getting up an hour earlier in the morning means you go to bed an hour earlier at night. But it’s so difficult to adjust when we don't want to accept that things have changed in the first place. 

I can think of a dozen examples where I was a late adopter to change - food to which I was having an allergic reaction, work schedules that caused fatigue, medicines that caused GI upset, to-do lists that prompted unnecessary pain or swelling. I didn't want to change because I thought it would take too much effort.  I thought it would be a sign of losing control. Of course - what I didn't realize is that a) I was already exerting a ton of effort, trying to stave off the consequences, and b) I'd already lost control. 

Put in that light - it becomes pretty clear, doesn't it? I'm already getting up at 7am. The change has already occurred. Now I just have to take steps to embrace that change so that I can get on with living well.

So fatigued I will no longer be. Ten pm is the new 11pm, haven’t you heard? I will start my bed preparations at 9pm, and it will be "lights out" at 10pm from now on.

At least until she starts sleeping in again.

(I'm only human!)


Friday, August 10, 2012

Those unpredictable things called children...and lupus, of course


It's official: Deirdre no longer takes a nap in the afternoon, much to my dismay.

Actually, I shouldn't say that.

I'm pretty happy with the current routine we have going. She still goes in her room for "quiet time" when Bernie and I go down for our naps around 2pm, and she alternates between "art day" and "movie day." On "art days",  she can busy herself with crayons, colored pencils, stickers and the like for about 45-50 minutes. On "movie days", she's hunkers down with her portable DVD player for more than an hour. I've added a digital alarm clock to her room so that she can see when her 3:00 pm rest time is officially over, and when that clock strikes three (or as she says, "there's a three at the beginning"), she tiptoes downstairs where she and the babysitter (who arrives at 3pm) are free to play.

Now - are "art days" uneventful and smooth sailing? Not always. Do they yield uninterrupted sleep for me? Not usually. But at least I know what to expect. I know that on "art days" I can't count on a full hour of sleep from 2-3pm, and I have to allow for my nap to extend to 5pm, if necessary. Yes, that means scheduling conference calls and appointments accordingly, but at least I know how to budget my time and gauge the events of the afternoon.

Before we got into this routine, I was a mess. The unpredictability of not knowing what she was going to do from one day to the next was just too unsettling. Some days she'd go in her bed and read for an hour; other days, she'd be in and out of my room (as I've blogged about before) a half a dozen times. I never knew what to expect during that hour from 2-3pm, and the less predictable it was, the more fatigued and frustrated I became.

But finally - we've transitioned - and we're predictable. It's not a perfect system, but it's manageable. And that's the way I like it.

Of course, this reminds me of the beef I have with lupus - the unpredictability, the inconsistency, the unknown. (In fairness, I should probably strike the word "inconsistency" from the list, because as I was crafting this post, I decided that lupus actually is pretty darn consistent - consistently unpredictable, that is. Do I hear any "Amens" out there?)

But to my point, it's not knowing where lupus is going to strike next, how hard, or how long that makes dealing with the disease so difficult. If there were perfect little patterns, or symptoms that followed an order, it sure would make it a lot easier to manage.

So that, then, is the goal: identify patterns in your disease when you can, recognize the triggers of disease activity if there are any, and track the symptoms and side-effects if possible. Establishing a sort of flow chart for our disease has to put us one step ahead of  lupus, while simultaneously making it easier to deal with the unknowns, which are still bound to occur. Expect the unexpected - but chart what you can.

So the flow charts for Deirdre's rest time have been drafted - and the patterns have been established. And just like I've done in the past, I will ride out this current state of predictability for as long as possible. Of course, until the next phase comes along...

Wednesday, August 8, 2012

Another lupus drug entering Phase III trials...Lupuzor

Looks like the trend of lupus drug R&D is continuing. Although it still may be awhile before ImmuPharma's Lupuzor is approved and available for use, I'm glad to hear that efforts are continuing.
Help is on its way!

Lupuzor on Fast Track for FDA Approval

ImmuPharma, a drug discovery specialist, says its main aim in 2012 are to advance its Lupuzor drug and its cancer treatment programme.

Chief executive officer Dimitri Dimitriou told shareholders 2011 had been an important year - where the firm had regained the rights to the lead compound Lupuzor, for the treatment of lupus.

Now the drug has approval from the US Food and Drug Administration to start a Phase III trial, along with obtaining fast track designation potentially shortening the approval time by a year.

To read the entire article about plans for Lupuzor advancement, click here.

And in another article I read, it sounds like Lupuzor offers a significant cost advantage over Benlysta and multiple other therapies in development. All good news as far as I can tell!

Monday, August 6, 2012

Another Pillbag retailer - this time, the Big Apple!

I'm thrilled to say that the Pillbags have made their way up the Eastern Seabord, and are now available in downtown New York City!

The newest retailer of Sara Gorman's Pillbags is Windsor Pharmacy, a perfectly situated independent pharmacy located at 6th Ave and 58th Street. Their address, for those of you sprinting out the door to brave the streets of New York to grab your very own Pillbag in person, is 1419 Avenue of the Americas.

The shop is a perfect fit for the bags - great little gifts, cute finds, with a nice pharmacy included. I'm excited about working with Windsor, and appreciate the recommendation from my girlfriend. Thanks a million, Ellen!

Of course, if there's a cute little gift shop or unique pharmacy in your neck of the woods, don't hesitate to shoot me an email. I'm always looking to expand my select list of retailers. I'll look forward to hearing from you - pillbags@gmail.com!

Friday, August 3, 2012

My faucet and me...and of course, Raynaud's.

Renovation plans are coming along - we've chosen our plumbing fixtures and our cabinets, zeroed in on countertops and flooring, and will be making our way to the tile store with our architect within a week or two. Surprisingly, what could have been two very overwhelming trips to showrooms proved to be an enjoyable and productive process. I did find myself losing steam at the plumbing showroom rather quickly, however. I was feeling pretty cocky after about the first 20 minutes - the showroom rep pegged us as "pretty decisive people" (cue ego boost) - and with my houzz.com site up on her computer, and whizzing our way around the showroom, I proceeded to pick our kitchen sink (which I was very particular about), our mudroom sink, and our bathtub within minutes of our arrival. After that, however, things didn't move quite so quickly. We started talking faucets and spigots, shower heads and toilets, and the choices just started, ahem, washing over me. I rallied, though - and with the help of our architect, we stayed on task and emerged from the showroom unscathed. One point for the homeowner!

In fact, I had a bit of an eye-opening experience about half way through our visit. I was in search of the perfect pull-down kitchen faucet, trying to weigh form over function, and attempting to find a look-alike to the one in my beloved magazine picture. There were way too many to choose from, but for every one I eliminated (because the pull down mechanism was too difficult or too precarious), I'd spot two more that I wanted to consider. But after about 7-10 minutes of pulling down one too many detachable sprayers, my Raynaud's set in, and the numbness and discoloration took over. I've noticed for awhile that applied pressure sets off the Raynaud's, but I hadn't even considered the fact that a harder-to-maneuver pull down might do the same.

So - looking at the faucets from an entirely new angle - I immediately eliminated any of the faucets that required you to physically push the pull-down part back into place. And yes...no matter how slick and cool they looked, they came off the list of possibilities. Then I went back through the remaining options that we liked, and eliminated another couple because the faucet handles were a little too small (for gripping with sore hands), or too tight of a fit (for swollen hands). That left me with just two or three choices, and the winner became obvious. It features a pull-down sprayer with a magnetic piece so the sprayer automatically snaps into place, the handle is sufficient, the design is great, and it pretty much resembles my picture. A faucet match made in heaven!

As I continue through the renovation process - I'll be sure to purposefully consider the side-effects and symptoms of lupus as I make my decisions. Heated bathroom floors (which would be oh-so-nice), a bench in the shower, easy to grip door knobs, easy open windows, and a whole host of other options come to mind. If any of you out there have been through a renovation and wish you'd done "X" to make life with lupus (or life in general) easier, don't hold back. This lupite would love to hear about it!

Wednesday, August 1, 2012

Treato.com - a new site to consider

I recently came across a website, Treato.com, and it looks like it could be a pretty good resource for medicine-dependent folks like me. Here's how they describe themselves:  


Treato.com is a new source of medical information based solely on real life experiences of patients, launched after three intense years of R&D. Treato searches health forums, blogs or any other user content web platform for User Generated Content ("UGC") that contains medical terminology written by patients. 


That information is then aggregated and presented in a sort of searchable database, so that we, as patients, when considering or having been prescribed a drug, can log onto Treato.com, type in the name of the drug in question, and find out what patients are saying about it. Like, really saying about it.


It appears that each drug included in the database has four categories of information: side-effects, treatments, effectiveness, and comparisons. This last category is pretty interesting, because you can see how your drug in question compares to other similarly-prescribed medications for a particular illness. 

Also featured are "Top Concerns" with each drug as well as a section about "What Patients are Saying". 


Of course, there's no substitute for consulting your doctor or pharmacist about the finer details of a drug, its side-effects, or the benefits and risks involved. But as long as you balance the information provided on Treato.com with the advice and direction from your doctor, I think the site could be a great resource. It most certainly is a real-time saver when it comes to searching online for patient feedback about a new drug you're considering or that's been prescribed. Check it out here, and click here for Treato's FAQ.