Monday, November 29, 2010

Absolutely, positively, no peeking

Clocking in at almost 8 weeks old, I think it's fair to say that Bernadette is a good sleeper. Not a great sleeper, mind you, but not a bottom of the barrel sleeper either. (Could either of my girls be bottom of the barrel at anything? I mean, come on!)

As babies, both she and Deirdre were pretty good sleepers coming out of the gate. Bernadette's taken a little longer to get that consistent 7 to 8 hour stretch going, but I'm well aware that at the 8-week mark, I should count my blessings that we're getting a solid 6 hour stretch to begin with!

Of course, as any mom knows - that 6 hour stretch begins the moment Bernadette's eyes close, and ends the moment I hear her desperate little cry (make that scream/grunt/yell) in the wee hours of the morning, demanding another round at the trough. So does this mean I get 6 straight hours of sleep? Well - I'm getting better at it. I've employed two tactics recently that are enabling me to get the maximum amount of sleep - and I'm loving every extra moment of shut-eye they're allowing me.
First, I've learned to do my nightly routine (contacts, teeth, pj's, etc.) before I feed Bernadette for the last time at night, so that the moment her eyes do close and I'm able to put her down for the night, I can, in theory, head straight for my bedroom and hit the hay. Now do I tend to get side tracked going from her room to mine? You bet. Do I tend to pop back downstairs to grab a water, or a quick snack, and end up opening up the day's mail or finishing up a to-do? Absolutely. But as I said, I'm getting better.

Second, I've been eliminated any and all extraneous "peeking" - whether it's checking back in her room to see if she's fallen asleep yet, or looking at the video monitor to see what she's up to. I don't need to see that she's still rustling around when I'm supposed to be trying to fall asleep. That "peeking" only gets me thinking, waiting, and worrying. Will she ever fall asleep? What if she doesn't fall asleep? Well - you know what? If she doesn't, she'll let me know. Make no mistake about that!

So this idea of "peeking" also crosses over to email, last minute to-do's or anything else I think I can fit in while I "wait" for her to fall asleep. The multi-tasker in me inevitably kicks in after I put her down, and I convince myself that taking a quick glance at my email, or finishing up a few thank you notes would be a good use of my time while Bernadette's settling down. But what ends up happening? I tell myself I'll just take a quick peek at my email, but then get completely engrossed in returning emails. Or I decide to just glance at a blog post I've been working on, or tackle the last few thank you notes I have to write, but then completely lose track of whether or not Bernadette's fallen asleep. And of course, she has - and the next thing I know, I've lost 45 minutes of my 6-hour stretch of sleep. Eek! As every lupite and/or nursing mother knows, every minute DOES count!

So wish me luck as I continue to abstain from "peeking" - checking my email is one thing, but passing up a glance at this adorable gal can be tough. I mean, look at her. Could she be any cuter?

Wednesday, November 24, 2010

The 1K mile marker

To all of you who have purchased a book, or passed along my blog to someone who has, I say a very heartfelt thank you, thank you, thank you!

As I soar past the benchmark of a 1000 books sold, I am sincerely grateful to all who have purchased a copy of Despite Lupus. I can't believe that more than a thousand copies of the book are floating around out there, hopefully being read, highlighted, and bookmarked...what a thrill for a first-time, no-name author like me!

Back when I wrote Despite Lupus, I had two goals - one short-term and one long-term:

The short-term goal was to sell my book to at least one person I didn't know. I knew my friends and family would come through for me and purchase a copy just to make my sales look good - but I figured that if at least one perfect stranger made a purchase, I would have succeeded in sharing my message. A thousand books later, I think it's fair to say that my short-term goal has been met! (Note that the day after my book came out last year, I spoke at a Lupus conference in D.C., where I sold 30 books to, you guessed it, perfect strangers. Was I on cloud nine or what?!)

My long-term goal, after that first week when I realized I was actually going to sell this thing, was to reach 1000 books sold. And I'm proud to say that earlier this month, I surpassed that goal and am now well on my way to Johnny's lofty prediction that in the years to come, I will sell ten times that amount. For that, we shall have to wait and see!

I have to admit that I never lost hope that I'd reach my goal of a thousand books. I felt the momentum building as I worked hard to market the book in the beginning, and knew that all of the preparation and effort that went into the book signings, speaking engagements, and lupus walks I participated in around the country would pay off, if I just kept at it. Not, of course, in a way that would jeopardize my health, but in way that enabled me to demonstrate to others just how mobile, healthy and fulfilled you can be, despite a life with lupus.


Most of all, I continued to believe that the message I had was worth sharing. It was and is a message of hope and courage, a message that is an integral part of a real, lupus success story: never stop believing that you can and will get better. You have to believe, heart and soul, that you have the ability to live well, despite your illness, and that you have the strength and courage to make the decisions required to do so. The steps involved may be a bit challenging, but they are not insurmountable. (Want details on how to tackle those steps? Feel free to check out chapters 1-8 of Despite Lupus, where the author tells all!)

So when a friend of mine shared the following story with me, I not only thought about how much it applied to my most recent goal of a thousand books, but more importantly, how it represents my motto for living well, despite lupus. Here's what she told me:


Her daughter (of whom we're a big fan) has been struggling for the last year with a chronic illness. While she's had very brief periods of reprieve, the disease is wreaking havoc on her body, leaving no body part (or bodily system) untouched. When my friend went into the neighborhood post office recently, the postal worker was kind enough to ask after her daughter, wanting to know if there had been any progress. My friend replied that, of course, the family continues to hope and pray. But the postal worker looked her straight in the eye, and said sternly, with a smile, "That isn't enough. You have to believe."

My hope is that she never stops believing, and that she finds her way to living well soon!!

Monday, November 22, 2010

Autoimmune Portrait Project - say cheese!

Check out this great blog, called "Autoimmune Portrait Project", when you have the chance. The blogger is photographer, Jodi McKee, who was diagnosed with Rheumatoid Arthritis in 2008, and has since started a portrait project featuring people with RA and other autoimmune diseases. The stories are very inspiring, and the pictures are quite lovely. And here's an article from Arthritis Today where she was featured.

Want to know a little bit more about Jodi? Here's a snippet from her site, giving you a little more background:

***
I am a photographer living in New York City. I was diagnosed with Rheumatoid Arthritis in 2008 and have decided to start a portrait project of people who have RA and other autoimmune diseases.

My hope for this project is that I can let everyone know that there are a lot of younger people out there who are dealing with these chronic, often painful, illnesses. Also, I think it is very important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not the only one.

Working on this project makes me feel like we are all in this together and that none of us has to go through it alone.

If you would like to participate and have me take your portrait, please e-mail me at jodimckeephotography@gmail.com. Thanks!

***

Enjoy!

Friday, November 19, 2010

Enabling the disabled

If you remember, I was asked to speak at an MS support group meeting at the end of the summer -and boy, did I enjoy myself. The group was fabulous - and I found myself surrounded by positive, cheery people who seemed to be plugging along with their chronic illnesses just like I am. The experience was super - and I hope they enjoyed my visit to the group as much as I did!

I learned a thing or two while I was there (isn't that always the case...), and I thought I'd share with you two bits of information that the members of the group seemed to be very keen on. Both involve making life easier on ourselves, so take a look and see if you might be interested. I can't speak from experience, as I've never applied for either service - but the group made it sound awfully beneficial for those of us whose mobility has been permanently or temporarily impaired. In fact, there was another woman with lupus who attended the meeting, and she couldn't say enough about the benefits of the disabled sticker she had on her car. It was easy to apply for and receive, and it's helped her primarily to avoid unwanted exposure to the sun in parking lots. Those long walks from the back of the lot really took a toll on her body, as they do many of us when we're flaring - not only the sun, but the joint pain and fatigue combined make for a very taxing activity. And that's before we've even arrived in the store!

Let me know if you have additional questions about the following. I might be able to put you in contact with someone who has experience with the application process. Note that the couple of state DMV sites I googled were very straight forward and helpful - so don't hesitate to google yours first!

Disabled placard for your car - Applying to the DMV for a disabled car sticker seems pretty simple...you just need to complete the application for your state's DMV and you'll need to provide a letter from your healthcare provider, detailing your current state of immobility (or photosensitivity, etc.) My apologies if your state has more red tape than this...but from what the Virginia contingent of the MS group said, it's a very easy process here in "Old Dominion."

Subway disability access, referred to as MetroAccess in D.C. - Applying for a Metroaccess pass ( a shared-ride, door-to-door, transit service for people whose disability prevents them from using bus or rail) here in the D.C. metro area seems to be a little more cumbersome, but again, the folks in the MS support group couldn't stop singing the praises of (and the needed relief provided by) the disabled access service for the subway system. One of the qualifying eligibility requirements is that you be unable to travel to or from a bus stop or rail station due to a disability, and again, you'll need to provide a health care provider's letter. It also appears that there is an interview process involved for Virginians...but be sure to check out the website to confirm. If you need to use the metro, but have limited mobility and could use the help of door-to-door transportation to and from the metro, this could be the ticket!

Wednesday, November 17, 2010

Putting your day to the Post-It test

A couple of weeks ago, Deirdre and I were making cookies together. We made the dough, added the chocolate chips, and dropped the dough onto cookie sheets. Deirdre then explained to me how the cookies were going to go in the oven, we'd have to wait for the "beep, beep, beep", then, as she said, "Deirdre eat cookies." While we were waiting, I mentioned to her that she could go read some books or play with her toys until we heard the buzzer. You know what she said? "No...Deirdre make list." She then asked for a piece of paper and a pencil, and got right to it. Hmmm. Guess there's no doubt that she really IS my daughter.

So when my brother-in-law sent me this link about list-making a few days ago - I couldn't deny that it was right up my alley. It's short, and sweet and to the point - which is exactly the way our daily to-do lists should look, apparently.

The gist of the article? Keep your daily to-do's to a post-it note. If it can't fit on that little square piece of paper, then you're not going to be able to cram it into your day.

Here's the link, and here's a picture of how one shouldn't abuse the post-it note rule.

Wow. That looks awfully familiar, doesn't it?

Monday, November 15, 2010

Another lupus drug on the horizon

A friend of ours works in the pharmaceutical industry, and turned me on to this lupus clinical trial which is currently underway and, I believe, still accepting participants. The study is intended to evaluate the use of the drug atacicept in reducing the number of flares for people with SLE. Check out this link for the specs on the trial, and read on for a little bit more about the drug Atacicept (or in pharma lingo, "compound"), taken from a recent Merck Annual Report.

***
THERAPEUTIC TARGET IN SLE VALIDATED FOR ATACICEPT:

Our research and development work in Autoimmune and Inflammatory Diseases focuses on proteins that modulate key pathogenic mechanisms in these diseases. We are developing the recombinant protein atacicept for autoimmune diseases such as systemic lupus erythematosus (SLE). This innovative compound blocks the two immunomodulatory factors APRIL and BLyS. They are important for the survival and the proliferation of lymphocytes that trigger an abnormal immune reaction against the patient’s own normal tissues.

SLE is a chronic, autoimmune disease that mainly affects women and is an area of great unmet medical need. We are currently enrolling patients into a Phase II/III clinical trial with atacicept in SLE. In the second half of 2009, a competitor published positive data from two Phase III trials in SLE involving a BLyS-targeted compound administered intravenously. These results are encouraging for us since atacicept targets not only BLyS but also APRIL, and is administered by subcutaneous injection, which is more convenient for patients than an infusion.

In 2008, we discontinued a Phase II/III study in lupus nephritis (LN), a particularly severe form of kidney failure, owing to infections that were probably the result of significant disease activity coupled with the concomitant use of several immunosuppressive medications. Having evaluated the trial data, we are now adjusting the clinical development plan for atacicept in lupus nephritis.

***

What's more, the LFA has recently re-launched the LFA’s Center for Clinical Trial Education with the addition of the Lupus Research Registry. The registry uses information provided by the registrants to help connect them to local clinical studies. In addition to the registry, the CCTE also offers resources about clinical trials and participation in clinical trials. Visit the Center by clicking this link, and you can sign up for the registry here.

Let's keep the ball rolling with new treatments for lupus. Go trials go!

Friday, November 12, 2010

1-800-LupusLovedOne

So Johnny was out of town last week from Monday through Thursday (thank goodness for Paola!), and then again for most of the day on Saturday. Know what he said when he walked out the door? He made me promise that I would get my rest...we had Paola...and that's why she was here...so I had no excuses.

And you know what the consequence was if I didn't? He threatened me with the dreaded "Johnny tells all" blog post - where he would reveal to my loyal readers that I'd been misbehaving. Was I ever shaking in my boots? (At least I was resting while I was doing it.)

Good news is that while he was away, I managed to get plenty of sleep - thanks to Paola as well as my own willingness to put all blogging, cleaning, washing, shopping, exercising, organizing, etc. on the back burner and focus on the task at hand: staying rested and healthy for my little ladies.

Johnny's little stunt prompted me to think that perhaps there are some folks out there who would like to get a little one-on-one time with the better half of Despite Lupus - that being one Johnny Gorman. Maybe you want to know what it's really like to live with me, a lupite who's hit bottom but made it back alive. Or maybe your spouse wants to compare notes. Or he/she wants to know what to say. Or perhaps more importantly, what NOT to say.

Johnny's on board - ready and willing to accept inquiries, and happy to do so. (In fact, I think this was actually his idea.) Feel free to email us at sara@despitelupus.com. I promise to pass any and all questions onto him - uncensored. The lines are open!

Wednesday, November 10, 2010

Alleluia! Our au pair has arrived.

A couple of months ago, I wrote a blog post about how I was struggling to accept the fact that as a lupite mother of two in diapers, I was going to need help during the day. I wish it weren't true - I wish I could be an energizer bunny who needed no sleep in order to function normally or prevent illness, but that's simply not the case. I need my rest, I need to ward off fatigue, and I need to stay healthy in order to be the best mom for my kids. And Johnny and I agreed that the best way to do that was to hire full-time help.

In looking at our options, we decided the best option for our family was to hire an au pair. Of course, I worried about what it would be like to have someone living in our house for a year, or how it would affect my relationship with my kids, but I knew that deep down, I needed to get over those concerns and acknowledge that hiring live-in help was going to enable me to be the kind of mom I want to be. Bottom line - it would be for the best.


Well, I'm happy to say that "the best" is an understatement! From the moment our Ecuadorian au pair, Paola, walked in the door a week and a half ago, I knew we'd made the right decision. She's just as wonderful as she was in her Skype interviews, and the fact that Deirdre enjoys cozying up to her after dinner just makes my heart melt. It's been just a week, and we're already getting into a groove that is destined for success.

Deirdre and I get to have our special time together while Paola hangs with Bernie, and Bernadette and I get our together time while Deirdre and Paola have some fun. And I get to rest when I need to - which has just been a lifesaver. To date, I am still symptom-free - a feat I didn't think was possible. I know the race isn't over, but it's always nice to get off to a good, solid start.


So thanks to my friends and family for encouraging me to go this full-time help route - and as the months progress, I'll be sure to keep you updated on the latest and greatest in the Gorman household. But before I go - I need to get a few things in writing. As we kick off this year with our au pair, I, Sara Gorman, vow to do the following:

1) Ask Paola for help when I need it, rather than trying to impress her with some sort of supermom/can-do-it-all routine.

2) Learn to speak Spanish. No ifs, ands or buts...

3) Acknowledge that help is help...and even if Johnny and/or Paola do things a little differently than I would, they're still doing them so that I don't have to.

4) Promise not to get jealous if (or should I say when) Deirdre asks Paola to put her to bed, rather than Mommy.

There you have it - let the year begin!!

Monday, November 8, 2010

Supplements and remedies - experiment wisely

So I've never been one to stray from doctor's orders - particularly when it comes to medication, supplements, or alternative treatments. Okay - yes - I've had my moments of weakness when it comes to taking those horse pills known as Calcium as religiously as I should, but on the whole, I consult my doctor and follow his lead when it comes to anything and everything regarding the treatment of lupus.

I even asked him about participating in a free acupuncture demo one time, which, interestingly, he requested I not try. (At the time, I was pretty sick...and I don't think he wanted me to complicate matters - but who knows? Being a traditional medicine guy, he might think the same today.)

So when the subject of supplements and natural remedies comes up, I don't have much to say. I've never tried any of the "cure-all's" that exist out there - noni juice, acai berry juice, licorice root, just to name a few - so I don't know if they have a positive effect or not. However, what I do believe, is that they will have some effect, and one needs to be prepared for that fact.

I've had several friends who have sworn by their remedies - and I'm so happy that they've found relief...but I have just as many friends who have tried these remedies, and suffered ill effects. In my opinion, that's simply because most anything you put in your body that's said to have some sort of healing/medicinal property is going to do something...if it didn't, it wouldn't stick around, would it?

So my only advice - supplements, natural remedies, and anything else that you experiment with aren't to be taken lightly. You never know what the effect is going to be - just be prepared for there to be one.

And, of course, I recommend consulting your doctor before trying anything. Whether or not they encourage you to move forward, you'll have brought them into the loop and kept them apprised of what you're up to. You may be surprised by their indifference, or they may have quite an opinion on the subject. Either way, you owe it to yourself to hear their side of the story. From my personal experience, if you're trying to keep something from the doctor, or attempting something on the sly, it's never a good thing!

Here are two articles found online (one from Sloan-Kettering, provided to me by a reader...thank you, Gale!, and one from Myasthenia Graves Foundation) that might be of interest. Neither discusses herbal remedies and lupus specifically, but I think both do a sufficient job of addressing the generic concerns involved in exploring alternative treatments.

Friday, November 5, 2010

Preventative care - make it a priority

I mentioned a few posts ago how tough it can be for me to view OTC drugs as just as "important" to my medical regimen as my prescriptions are. I'm getting over it, which I need to do...but I unfortunately have to lump preventative care and annual check ups in this same category. With all of our appointments with the "specialists", how hard is it to motivate to make that annual check up with, say, the gynecologist? It's just hard to fit in, amongst the other "regular" appointments that we schedule for lupus - the opthamologist for plaquenil, the rheumatologist, the pulmonologist, the nephrologist, cardiologist, neurologist, etc., etc., etc.

But I recently pulled the trigger on scheduling both a dental check up and a dermatologist appointment, and I feel pretty good about it. Nothing's wrong - I don't detect anything amiss - but I just know that this kind of preventative maintenance is what keeps us out of trouble in the long run.

I'm proud to say that I've never had a cavity (knock on enamel), and I currently have no dermatological concerns (even though my genes don't bode well for skin cancer...), but the only way to keep it that way is to be seen periodically. And that's a fact.


Perhaps you're dragging your feet on an annual check up or exam. Follow my lead - pick up the phone - and make the appointment. It can only help - and it won't hurt. (At least the phone call won't!)

Wednesday, November 3, 2010

How far we've come...

A few years ago, we had a couple over for dinner - our college friend Susan and her husband Alex. Susan and I found ourselves chitchatting in the kitchen as dinner was cooking - talking about the trials of life with a chronic illness - hers being epilepsy, and mine being lupus. In fact, we were both at the same point in our lives regarding pregnancy - we both were mentally ready for kids, but our bodies weren't fully cooperating. Neither of us were sick, per se, but we were both on medications that prevented us from trying to get pregnant, and our levels of well being weren't quite what we wanted them to be to make the switch to another medication. After comparing notes about medications, limitations, and workarounds due to our chronic illnesses, in addition to the questions, concerns, and consequences of getting pregnant, given our high-risk situations, we both resigned ourselves that children might not be in the cards for either of us, although we certainly wanted them to be.

Fast forward less than 2 years later, and Susan and Alex returned to our house for dinner. Once again, Susan and I found ourselves in the same places in the kitchen, but this time, baby Deirdre was on my hip, and Susan's sweet baby Lily was in the next room playing with some toys. We remarked at how far we'd come - though we really didn't know how we'd gotten there - and that clearly, we'd never lost hope of the desire to live well enough to fulfill our personal goals of having children. How sweet it was to be standing there with baby in tow...the exhilarating feeling of having succeeded in what I thought was the impossible - to have a child of my own, despite lupus.

Fast forward just 2 more years - and not only is Miss Deirdre by my side, but now I have another little baby to love and to hold - what with the arrival of one baby Bernadette.

And the kicker? Susan, too, is expanding her family - due with another baby in January.

Pressing on, despite our chronic illnesses, wouldn't you say? Of course, what's cause for even more celebration is that we've both been able to keep our illnesses in check while raising our two little ladies. Not only have we survived motherhood once over without jeopardizing our health and wellness - we've enabled ourselves to have even more children. Of course, Susan and I will both tell you - there have been sacrifices, and adjustments, and compromises along the way - but obviously, we enjoyed the experience of motherhood (with a dash of chronic illness) enough to give it another go.

And how sweet it is the second time around!

Monday, November 1, 2010

Caffeine Free


During the holidays last year, I attended two events in one day – a pancake breakfast with Santa in the morning, and a Lupus luncheon event in the early afternoon. I filled myself to the brim with holiday goodies at both events, and washed it all down with several cups of coffee. I always choose decaf, and did so at both places.
However, that afternoon, as I lay in bed trying to fall asleep, I felt the familiar jitter of yesteryear – that old caffeine high from college that isn’t so much a high as it is a convergence of sweaty palms and a frazzled brain. I HATE that feeling, and although I was able to fall asleep for a short period of time, when I awoke, I felt like my brain had been “on” the whole time. I wasn’t rested, and my eyes were still bugging and my hands were shaky. I'd clearly had a cup or two of regular coffee somewhere along the way. No doubt about it.
So what gives? Is the orange carafe no longer the universal sign for decaf? I was definitely hoodwinked that day…and I’ve been careful to ask before pouring since then. No need to repeat those wired feelings ever again!
As you can imagine, caffeine and I aren’t fast friends. I know many people who rely on the stuff to get them through the day (or even those first few moments of the morning), and to them, I say go for it. I’m glad they’re not quite as sensitive as I am (although surprisingly, when I drink a caffeinated soda every blue moon, I don’t suffer any consequences - weird, huh?)
But because I’m such a proponent of re-energizing the old fashioned way (via a nap), I couldn’t help but jump at the chance to share with you the findings of a study done at the University of California, featured in a past issue of Behavioural Brain Research. The results? Caffeine was found to impair motor learning and verbal memory, while an afternoon nap benefited all types of learning. A-ha! I knew it. Before I continue to gloat…here are the official details of the study:
Ninety percent of Americans use caffeine daily, some substituting it for sleep. While caffeine enhances alertness and concentration, it’s been unclear whether it also helps learning and memory. By contrast, daytime naps, like nighttime sleep, benefit both alertness and memory, according to this series of studies.
In this first head-to-head comparison, 61 participants trained in the morning on verbal memory, motor and perceptual learning tasks. After lunch, one group napped (60-90 minutes), while two other groups listened to a book on tape and received a pill containing either the caffeine equivalent of a little less than a Tall Starbucks coffee (200mg) or a placebo. Later in the afternoon, the three groups were tested to see how they had learned the tasks.
The nap group performed significantly better on a finger tapping motor task and in recalling words than the caffeine group. The nap group also trumped the other groups on a texture discrimination task of perceptual learning. The placebo group performed better than the caffeine group on all three tasks. Curiously, just thinking that the pill might contain caffeine – the placebo effect – helped as much as a nap on the motor task.
Evidence suggests that caffeine interferes with tasks that require processing explicit, as opposed to implicit information – like recalling a specific word, versus remembering how to type or ride a bike. Studies show that consolidation of such explicit verbal memory during sleep depends on lowered levels of the chemical messenger acetylcholine in the brain’s memory hub. Yet, by blocking activity of a natural sedative chemical, caffeine boosts acetylcholine in this hub.
“This increase in acetylcholine by caffeine may impair the consolidation process by blocking replay of new memories,” proposes Sara Mednick, Ph.D, who spearheaded the study. “Consistent with this, we found that the greater the explicit component of each task, the worse the caffeine group performed.”
Sleep well, little lupites. It's good for you!
*Article reprinted from the National Institute of Mental Health.