Monday, September 30, 2013

Running for a cause: Laura Sweltz


I'd like to introduce you to Laura Sweltz, an impressive young lady who is running the Marine Corps Marathon at the end of October...all in the name of lupus. I'll let her tell you her own story, and feel free to click here to find out more. I'm sure she'd appreciate your words of encouragement and support. She's raising money for my very own chapter of the Lupus Foundation. Three cheers for theLFA DMV!


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A little about Laura, in her own words:

When I was first diagnosed with lupus almost three years ago, my symptoms were very severe and I could not imagine being able to walk without pain again, let alone run. As I gained more control over the disease, I attempted to run several times but it always caused more harm than good. I assumed that I was going to have to give up running forever and that my dream of running a marathon would never get crossed off my bucket list.

Earlier this year, I finally felt healthy enough to give running another try. I started with low expectations, but with each mile I grew stronger and happier. Running provided an outlet, a place where I didn’t feel defined by my disease. After months of training, my goal of running a marathon seemed within a reach and I decided to run the 2013 Marine Corps Marathon on behalf of the Lupus Foundation of America DC/MD/VA chapter.

Running a marathon is no small feat —especially when you have lupus. Since starting marathon training, I’ve made rest and extra naps a priority and sacrificed other activities to ensure that my body can handle the extra stress. I think its worth it to tackle my goal. Lupus presents extra challenges that can stand in our way but with patience and a willingness to find a way to make things work, it doesn’t need to stop you from accomplishing your goals.

On October 27th, I will stand at the starting line prepared to run 26.2 miles to raise awareness and money to support LFA programs as well as prove to myself and others that living with lupus does not have to mean giving up on your dreams. If you feel inclined, you can support my journey by making a donation to LFA here. I also encourage you to think about the dream that you may have pushed because of lupus and see if there’s a way to make it happen.

***

Thanks, Laura. And best of luck!

Friday, September 27, 2013

LFA's Take Charge and Make a Change Video: September 2013

I had a great time at last weekend's LFA DMV "Take Charge and Make a Change" Advocacy Workshop. It was a totally different kind of seminar, and I was thrilled to participate. You can check out a short snippet of my presentation below, and you can catch the next Advocacy Seminar in Richmond, on October the 5th, from 11-2pm. Click here for more information.



What was the nature of my talk? How to feel confident and comfortable when talking about lupus. It can be a tall order, right?

In this short clip, I briefly touch on why I used to find talking about lupus difficult (could it be the myriad symptoms, all of those nasty side effects, the physical limitations, the emotional toll, and the fact that aspects of our work, personal and social lives are all compromised?); how talking about lupus used to make me feel (tense, defensive, resentful, not to mention tongue tied); and how I decided to alter that experience so that talking about lupus was one with which I was comfortable, felt confident, and could do with ease. (I promise...it can be done!)

There were some great questions posed at the end of my talk by participants -  one of which dovetailed perfectly into a blog post I was already writing about what to do when you're "homebound". I'll be sure to tell you next week how I've been managing my "homeboundness". It wasn't that fun at first, but I'm slowly learning to embrace it. You should see how organized my hall closet is now!

Wednesday, September 25, 2013

The "Me" breakthrough - the 15-minute nap to the lupus rescue!

Per my recent posts about a) my need to slow down, and b) the insurgence of some "me" time in my daily to-do's, I think I've had what they call a BREAKTHROUGH.

One day last week, I found myself with 15 minutes to spare. Fifteen big ones in which to do whatever I wanted. I'd just finished unloading the dishwasher, typed an email to our contractor, and fulfilled my daily Pillbag orders. I didn't have to pick up the girls from school for another 15 minutes. What, oh what, should I do with that precious quarter of an hour that I had?

Should I tackle the sink full of dirty dishes (remember, I'd just emptied the clean ones...so "finishing" the job would only make sense)? Maybe pull out the load of laundry from the dryer that needed to be folded? Or better yet, add some finishing touches to an upcoming lupus presentation, finalize my inventory on Amazon, or work on a blog post? So many options to use my time wisely...but as I contemplated my options, I had to admit that I was also fighting a bit of mid-morning fatigue. I thought back to my Pottery Barn post, and realized at that moment, I had the opportunity to fit in a little "me" time...in the form of a cat nap. I know, I know, not the most fun use of "me" time, but definitely the best use of it.

I set the alarm on my phone for 15 minutes, and called up to Johnny's office to let him know Darwin and I were hitting the sack. Fifteen minutes later, I woke up - refreshed and ready to go. AND extremely proud of myself for choosing wisely.

Want to join me with a wise choice in the rest and relaxation department? Today, just take 15 little minutes for yourself, and witness how good it feels to choose wisely. Maybe it's flipping through a magazine (which I never do anymore), painting your fingernails at home (which I haven't done in forever), or taking a glorious catnap, enjoy your "me" time and let me know how it goes!

Monday, September 23, 2013

HSS Events: Honoring Lupus Heroes on 9/24 and Facebook Chat on 11/6.

About two years ago, I traveled up to NYC to speak to a lupus group at the Hospital for Special Surgery. I could tell then that HSS paid special attention to their lupus patients, but they've gone above and beyond with their upcoming event. On Tuesday, September 24th, HSS is hosting an "Honoring Lupus Heroes" event, which will recognize patients' remarkable contributions to lupus research and care. How great is that! Here are some snippets from a recent press release about the event: 

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According to Dr. Jane E. Salmon, Director of the Lupus and Antiphospholipid Syndrome Center of Excellence at Hospital for Special Surgery (HSS), “Our patients are the unsung heroes who have helped transform lupus care,” They donate blood and tissue samples for research, take investigational drugs in clinical trials, provide personal insights to improve how we care for them and for others. They are philanthropic and volunteer as peer counselors. They sacrifice time, energy, personal resources and their own privacy to advance science and clinical care.”

As part of Hospital for Special Surgery’s 150th anniversary celebration, the Division of Rheumatology will honor the thousands of lupus patients who have inspired each member of the healthcare team.  “Honoring Lupus Heroes,” will celebrate patients’ wisdom, generosity and invaluable contributions to lupus research and care on Tuesday, September 24, from 5 PM to 7:30 PM.  The event will take place in the Richard L. Menschel Education Center on the second floor of the hospital’s main building in New York City.

“When I started out as a physician many years ago, the average survival rate was around three years. Today it is rare to lose a patient to lupus,” said HSS rheumatologist Dr. Michael Lockshin.  “Advances in lupus treatment have transformed it from a fatal disease to a chronic illness, enabling many people to lead normal lives. ‘Honoring Lupus Heroes’ will help us acknowledge the many patients who have helped HSS lead the way in gaining a better understanding of this disease.” 

One such patient is Rachel Grodzinsky, one of the first people to participate in a study at Special Surgery challenging the widely-held belief that women who had lupus should not become pregnant.

“I felt somewhat honored to be a part of it. I felt it was really important,” she recalls.  “Pregnancy was something I had been struggling with for a few years before I actually got into the study. It felt very dear to me because it was something that I felt would help people after me.” Grodzinsky later became the proud mother of two sons.

“Our ‘Lupus Heroes’ are extraordinary people whose contributions have helped improve the lives of thousands of individuals with the disease,” said HSS physician-in-chief Dr. Peggy Crow. “They have taught us poignant lessons about compassion, service and excellence in care. We are deeply grateful that they have allowed us to learn from their journey and grow as caregivers, and we’re thrilled to have this opportunity to honor them.”

***
In other HSS news, a Lupus Chat will take place on the HSS Facebook page on November 6 from 5:30 to 6:30 p.m. EDT.

Be sure to mark your calendars!

Friday, September 20, 2013

Lupus lifestyle accommodations - Setting myself up to succeed

As I mentioned on Wednesday, the joint pain (and fatigue) that I've been experiencing recently hit a disruptive threshold, such that I decided to drastically reduce the stress and activity I was adding to my day. My body needs all the energy it can to fight off the symptoms, so I have to cut down on the ways my energy is expended, in this case, in the form of a busy, hectic schedule. And while there's no guarantee that lifestyle changes are going to eliminate my lupus symptoms completely, I've found that by reducing my daily emotional and physical "output" (i.e stress, stress, stress), I set myself up for the best chance of making my disease manageable again.

Fortunately, the joint pain is really responding to the increased dosages of medication, per my doctor's orders (600mg plaquenil now, and doubled prednisone daily), but I know for a fact that the lifestyle changes I've made are helping tremendously, too. I can tell that my body appreciates the conscious effort I'm making to take care of myself. Glad it's taking notice!

Here's where I decided to start, focusing each day on adhering to these three guidelines:

1) Take a nap in the 2:00's:  

Since we moved back into our house in August, my nap has consistently (though inadvertently) been pushed to start after 3pm. It was, in part, due to the presence of the workers putting the finishing touches on the house (they worked until 3pm), Bernie's ability to go later into the afternoon before she gets sleepy (she's almost 3 years old, so she's slowly cutting out that afternoon nap), and me, just wanting to feel invincible and productive. (Oh, the trouble that brings!!)  So here we are, at the end of September, and my body's running at a deficit. I probably could have managed an after-3pm nap for a week, or two, or even three. But for almost two months? I don't think so. The cumulative effect of forcing my body to push through for an extra hour has taken its toll. And now it's time to right the wrong. (Note that I've actually been adding a second nap here and there, and that's making it even easier to manage the symptoms.)


2) Run only one errand a day

Oh, is this ever difficult to do. I've had to pass on lunch dates, forgo quick trips to the grocery, and settle for buying birthday gifts from CVS (gift cards, of course) because I was already there, and I wasn't "allowed" another errand. It's definitely a challenge - but I was running around way too much before, and I'm now paying for it.  Of course, because I'm not dashing around town, I've easily been able to make my 2:00 naptime, so at least things are working in concert with one another. Running only an errand a day has made me much more reliant on Johnny (who ends up being the one to run to the store for the gallon of milk), resourceful (ordering lightbulbs online because running to home Depot would be a waste of my errand), and efficient (grouping errands in a side-by-side stores so that they essentially become one.)

These two adjustments are what I call "lock-down", as I end up being relatively house-bound. Aside from the one errand a day, and the requisite trips to drop off and pick up the girls at school (which is less than a mile from the house), I'm at home, and it's been good. I can feel my laid-back, carefree ways making their way to the forefront once more.

3) Exercise 3 x a week 

I also realized that because I was always dashing out the door to run errands (or to avoid the presence of the construction guys now and again), I was skimping out on my weekly exercise regimen. I would run a day here, or a day there, but not the consistent 15-20 minutes, three times a week that I've done for years. I was missing out - emotionally and physically - and I decided to fix the problem. The time on the treadmill has become a priority again. There have been a few days when I haven't felt like running at my normal time, but I've found postponing my exercise until after my nap does the trick.  It's been good to get moving again...and it's paying off.

In upcoming posts, I'll tell you more about my "homeboundness" - what I've been able to tackle, and what I've chosen not to - at home. It's been important for me to still feel like I'm "doing", and contributing, and I've been able to turn my attention to some of the easily-accomplished tasks that fit the bill. Talk to you next week!

(Please consult your doctor before making any changes to your medication regimen.) 

Thursday, September 19, 2013

Everyday Health takes a closer look at lupus. Thanks, Dr. Sanjay Gupta!






News & Advice

Living With Lupus
It's been 12 years since Sara Gorman learned she had the autoimmune disease, and life hasn't been the same since.



So happy to read the Everyday Health article about lupus! Dr. Sanjay Gupta did a fabulous job hitting on the challenges of the disease. I was so pleased to be interviewed. Snippets are below, but you can read the entire article here.


***
'
Sara Gorman was diagnosed with lupus when she was 26, but she considers herself lucky. That’s because the diagnosis came within a few weeks of her symptoms’ onset.  “It’s highly irregular to get diagnosed in just six weeks,” said Gorman, who was diagnosed 12 years ago. “For most people, it takes months or even years to get diagnosed because the symptoms come and go and don’t clearly point to lupus.”

Gorman’s lupus started with pain that ran from her back to her side, which her primary care doctor diagnosed as a pulled muscle. When the pain became so bad that Gorman couldn’t sleep, her doctor ordered a chest x-ray that showed pleural effusion, a buildup of fluid between the layers of lung tissue. Subsequent visits to a pulmonologist and a rheumatologist led to a blood test that showed a high presence of antinuclear antibodies and the diagnosis that she had a “very solid case of lupus.”
Gorman went on to develop kidney problems, anemia, hair loss, and the “lupus brain fog” that causes memory loss and confusion. Gorman’s doctor put her on steroids and immunosuppressants that helped control her symptoms, but “lupus fatigue” made it impossible to continue her career as a television producer.
At first, Gorman would leave the office early and tried taking naps. “I was so mad I had to do that,” she said. “What 30-year-old takes a nap in the middle of the day?” She worked from home one day a week before switching to a part-time position, but had to retire altogether in 2006.
Gorman has her symptoms under control for the most part. She belongs to a local support group in Alexandria, Virginia, where she says she can be “a person first and a lupus patient second.” She also started a blog, wrote a book about her experiences, and even started an online business selling colorful pill bags for patients embarrassed about taking medications in public. “I thought, let’s take this awful routine that’s full of drudgery and makes us feel old and decrepit, and make it stylish,” she said.'

***


Wednesday, September 18, 2013

Lupus joint pain - my breaking point

I've alluded to the joint pain that's been hanging around for several weeks now...and I can finally say I think it's on its way out. Thank goodness! It was a little touch and go there for awhile. Even upping my prednisone per my doctor's instructions wasn't working. But it wasn't until I combined the increased medication with a decrease in errands, an increase in rest, and more routine exercise that I noticed a difference. Ah, the value of the three-prong approach. I'm glad I've had 12 1/2 years to develop the strategy!

I had a scheduled doctor's appointment last week. So when the joint pain kept hanging around morning after morning at the end of August, I just kept telling myself that I just had to make it to the appointment. But about a week and a half in (still almost two weeks until my appointment), I hit my breaking point.  Not my threshold for pain, but rather, my threshold for how disrupted my life can become because of the pain. Over the years, I've found it easiest to gauge my joint pain by my ability to function (or not) on a daily basis - if I can't do "x", it's not so bad, but when I can't do "y", I know it's time to reassess.

So before I tell you the accommodations I made (I know you'll be on pins and needles until Friday's post), here are just three of the simple benchmarks I hit, telling me my joint pain was getting in the way, and I needed to make some changes:

1) I couldn't open the plastic of a new cereal box. Ugh! My weak, arthritic hands just kept slipping off the plastic. I couldn't get a grip, and it was painful to try and do so. And when I tried to open a second unopened box (telling myself General Mills simply sealed their cereals too tight), I couldn't open that one either. (Turns out Post does the same thing!) Of course, in this case, no food company is at fault. I just had to admit that my joint pain was causing too much trouble.

2) I couldn't do the girls' hair - which was really a bummer. Deirdre came three mornings in a row to ask me to put her hair in a ponytail, but trying to open the elastic band and grab her hair at the same time just wasn't possible. Spreading my fingers in directions they didn't want go caused excruciating pain,  and I had to pass her off to her dad each time. Watching her walk away dejected, and feeling rather inadequate, I knew I couldn't let this level of pain continue.

3) I couldn't lift the covers over my shoulders while sleeping. How annoying! Anyone who's experienced joint pain at night knows the frustration this causes. You're in bed, trying to sleep because you know that's the best thing for your disease, and you innocently try and pull the covers up over you and experience horrific pain that leaves you wincing for several minutes. Double ugh! I absolutely hate when that happens...and it was happening every time...so I knew I needed to take my disease activity seriously.

Now - could I do all of these things after a few hours once my increased medications kicked in? Most of the time. Was the rest of my day unaffected after that point? Pretty much. Have there been times in the past where these inabilities were just part of the lupus deal? Unfortunately yes. But I'm not willing to settle for a couple of hours of pain every single day, when I know how good it's possible to feel. I know lupus can flare, and I realize there may be a point where some degree of pain just has to become part of my day. But I'm certainly not going to accept that new "norm" without exploring every option for keeping the pain at bay, be it lifestyle changes, medication adjustments, or both?

So stay tuned for Friday's post, where I talk about the three "lifestyle limitations" I had to put into place in order to try and combat my joint pain. I knew I wasn't doing everything I could to rest my body, so I had to enforce a few rules to ensure that I was. And oh, how they're working!

Monday, September 16, 2013

Friday Affair at Hollin Hall - This Friday, 9/20/13 in Alexandria, VA. See you there!

It's back to Hollin Hall I go! If you're in Northern Virginia, join me this Friday for another Friday Affair at Hollin Hall. Looking forward to grabbing a delicious sweet treat, picking up a gorgeous bouquet of flowers, and of course, selling a few Pillbags! Don't be surprised if you see Mr. Pillbag himself manning the booth on Friday. Johnny always fills in for me during nap time, but he's thinking about running the show all day long. If you tell him you read about his big blog mention, I bet he'll cut you a deal on a Pillbag! 

Want to learn more about the Friday Affair? Check out this great article in the Examiner. 


Friday, September 13, 2013

Off to Annapolis tomorrow for LFA's Take Charge and Make a Change event!

Looking forward to speaking at tomorrow's LFA DC/MD/VA event in Annapolis, MD! The workshop, entitled "Take Charge and Make a Change"is a multi-topic seminar that will focus on empowering individuals to advocate for themselves on a social and political level to overcome healthcare barriers. I'll be covering the social aspect - how to feel more confident when talking about lupus, and how to prepare yourself for the questions and answers when you say, "I have lupus." (What a loaded statement, right?)  

Hope you can join me - my books and Pillbags will also be available for sale. Be sure to come by and say hello! 


WHAT: Take Charge and Make a Change
Lupus Foundation of America, DC/MD/VA Chapter

WHEN: Saturday, September 14, 2013

11 am - 2 pm

WHERE: Anne Arundel Medical Center

2001 Medical Parkway
Annapolis, MD 21401

Morning: Legislative Issues of Relevance to the Lupus Community
Gene Ransom III, CEO of the Maryland State Medical Society

Lunch: Lunch and Learn about Lupus
Sean Whelton, MD, Georgetown University Hospital, Washington D.C.

Afternoon: Finding Your Voice
Sara Gorman, Author of "Despite Lupus: How to Live Well with a Chronic Illness"

Wednesday, September 11, 2013

Inserting "fun" onto the to-do list...loosley inspired by Pottery Barn

I was flipping through the newest Pottery Barn catalog recently, and I noticed a wall chalkboard they have for sale. It wasn't the actual chalkboard that caught my eye, but the "to-do" list that was written on it. Here's what's listed on this imaginary homeowner's list:

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This Week:

*Photo show
*Book flight to Tuscany
*Sunday flea market
*Make bread

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Wow. If only.

Now, before you pass this off, as I almost did, as just another skewed perception of what a real-life agenda truly looks like, I can't deny that I would love for these and only these four tasks to appear on my weekly to-do list some day. Wouldn't that be the life? Take in a little photography, plan a trip abroad, do some shopping, knead some bread. The items on my week's to-do list - "Clean Darwin's ears", "Make preschool snack", and "Buy a bottle of Drano" are curiously absent from PB's list. Hmmm...I wonder!

But here's what I found most interesting about this made-up list. Just a few days before I came across this photo, I'd decided that I should start inserting a couple of "non-essential" tasks onto my to-do lists. Things that aren't time-sensitive, and that don't impact anyone's schedule, well-being, or livelihood. Rather, a couple of items that might be, shall I say, simply enjoyable to do? Maybe tackle those photo books for the girls, or design and sew some pillows for our mudroom bench. I have so many things for work and home that are deadline-driven, I thought my body and mind might benefit from seeing a few items of reprieve on my lists.

Like many of us, I've discovered that if I don't make a point of tackling the fun stuff, my attention goes to the deadline stuff. With the girls both in school now (albeit for a few hours, only two mornings a week), I'll have a little extra time to myself. And I don't want to make the mistake of blowing it on more "musts." The joint pain I spoke of on Monday hasn't been fun, and it's not going to get any better if I run myself ragged, trying to eek out every minute of every hour. I'm determined to make my new found free-time as stress-free as possible.

So on this first week of school, I'm going to make sure I throw in a few minutes of fun. A little "me" time. Who knows? Maybe I'll even take in a flea market!

Monday, September 9, 2013

Oh, the decisions we make for our health and wellness!

One last night week, I had a decision to make. It was 8:10pm, and time for our put-away-toys/pick-up-the-house routine before heading up for baths and bedtime in the Gorman household. We were already 10 minutes behind schedule, but usually we can make that up somewhere along the way. However, given the state of the house (eek!), we were in for a chore. My choice was this: take the 20+ minutes to clean up, getting Johnny and the girls to help, and put them to bed later than planned, or forget the clean up and just get the girls to bed on-time. What's a mom to do? I can tell you what a mom with joint pain decides to do. With dinner dishes staring me in the face, the girls' toys strewn across the floor, a pile of 1/2 opened mail on the kitchen counter, and various other projects piled around needing a quick cleanup, I opted for an on-time bedtime. I figured getting the girls to bed at a decent hour would enable me to get to bed at a good time, and one night of mess wouldn't kill me. No one was coming over early the next morning, and I knew I'd have plenty of time to leisurely tackle the remains of our end-of-day madness. I was sure my joints would thank me the next morning.

So up the stairs the girls and I went, leaving the mess behind us. The girls hopped in the bath, I settled in to help with shampoo, and Johnny kindly started in on the dishes. And then, there was a knock at the door. I heard Johnny answer it, and it was our good friend in the neighborhood, taking Johnny up on his offer earlier in the day to get a tour of the house. Aggghhhhh!!!!

I couldn't believe that this was even happening - first, that Johnny had forgotten to mention that there was an invitation out there for someone to come by the house today , and two, that of all the nights in the whole world, tonight had been the one when I'd opted to leave the mess of all messes unattended. Can I tell you how embarrassed I was? Can you imagine the fire in my cheeks as I sat there, washcloths in hand, knowing that downstairs, my neighbor was seeing our "new" house for the very first time with it looking the way it did?

As I tried to remain calm, I heard Johnny explain that when he'd mentioned earlier in the day that she should come by, the house had been spotless (which was true.) And he, of course, apologized profusely for the mess, and she said her house looked the same, and that everything looked fabulous. Blah, blah, blah. Johnny continued the tour as the girls and I finished up the bath, and as they climbed the stairs to see the upstairs (which was in equal disarray), I apologized again. She just showered us with compliments, which was kind of her, and we promised to have her over again, on a "mess-free" evening.

As I was kissing the girls good night, I heard Johnny walk our neighbor out the front door. He came up the stairs, and we just looked at each other. And then we smiled. We smiled because we, the neat nicks on the block, had just been caught with our pants down. We smiled because the tour was over, and despite the fact that our messy house had just been exposed, everyone had survived.  We smiled because at 9pm, the girls were in bed, and we had the evening to ourselves. We smiled because, in the end, I believe we'd chosen wisely. Sure, our pride had taken a hit, but I just chalked it up to another sacrifice made in the name of lupus. That joint pain I mentioned? It's been hanging around for over two weeks now. Two weeks too long. I'm waiting patiently until it subsides (more on that on Wednesday), but at this point, every little decision counts. Johnny and I agreed that by letting that mess go, taking our visitor in stride, and getting to bed on time, I'm doing everything I can to make that joint pain disappear. And I assure you, my efforts are working!

Wednesday, September 4, 2013

Charity of the Month - Sept-Oct-Nov 2013: Lupus Foundation of Florida

A big fat thank you to The Lupus Endeavor for participating in the Pillbag Charity of the Month program all summer long! TLE is a fabulous cause, created by a fabulous gal - I'm so glad we could contribute to her goal to raise funds for lupus.

Lupus Foundation of FloridaNow that the fall months have arrived, it's time to pass the baton to our next charity - The Lupus Foundation of Florida, in St. Petersburg, Florida. The organization has been fighting for lupus for more than thirty years, and we're proud to be contributing 5% of all Pillbags sold during September, October, and November to the Lupus Foundation in Florida. Check out their website today!