Friday, January 25, 2013

Listen Up, Doc! Webinar with SLE Lupus Foundation in NYC!

Wow! What a pleasure to work with the S.L.E. Lupus Foundation in NYC a few weeks ago. I thoroughly enjoyed the webinar I did with their group, and S.L.E's Jessica Rowshandel  did a great job writing up the event. See below from her summary of the webinar, and feel free to click here to listen.

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Learnings from Our Latest Webinar — Living Well Despite Lupus: Listen Up, Doc!

Listen to the one-hour webinar presentation by noted lupus patient and blogger Sara Gorman, author of the book Despite Lupus: Living Well with a Chronic Illness. You’ll feel like you are listening to a good friend.

The focus of Sara’s talk is getting the most out of your doctor appointments. Why? Because she finds that Effective Appointments Equate to Effective Treatment! To best treat such a complex chronic disease, your doctor needs to have a full picture of you — everything from how many hours you worked each day to how you feel after you take every medication. She emphasized the need to truly collaborate with your doctor as a team, to approach each visit almost like a job so you know what you want to learn going in and are satisfied that your questions are answered going out. If you already have this type of strong relationship with your doctor, Sara’s insights can serve as helpful reminders.
Her key pointers for using doctor’s appointments to improve your treatment are:
  • Be Open
  • Be Honest
  • Be Assertive
Sounds simple until it’s you facing the doctor in the examining room. Sara goes through each one to explore why it can be hard to be open, honest and assertive with your doctor and ways you might overcome these obstacles to get the best care.
Why is it hard to be open and honest?
Some of the issues Sara raises include:
  • Embarrassed and uncomfortable talking about certain topics like sores, rashes and hair loss — and don’t always want to admit how bad you really feel. Sara gave the perfect example of not telling her doctor about a rash on her bottom because it was embarrassing. When she finally told him weeks later, it turned out to be a blood infection that needed antibiotics! Not telling the doctor prolonged her discomfort, and could have had serious consequences.
  • Can’t remember everything — All the symptoms, the medications, the side effects. It’s a lot to remember but every detail could be important. The best way to “remember” is to write it down, and Sara had many easy suggestions for how to record information every day like using a journal, creating a daily tracker by hand or creating a spreadsheet on the computer. Whatever, the format, the benefit is keeping all the information in one place that you can refer to when you are with the doctor.
  • Not enough time — Like many, your doctor may seem rushed and overly busy. Showing the doctor your daily tracker saves time by presenting a lot of information in a very condensed quick format. The doctor can ask further questions based on that data.
Why is it hard to be assertive?
Reasons that rang true for many on the call and may for you as well include:
  • Intimidated by the “expert” who knows so much about lupus. But asking questions shows that you are interested without challenging the doctor’s knowledge. And faced with your questions, the doctor might consider and reconsider a recommendation.
  • Takes too much energy — Playing an active role in your treatment can take a lot of energy, and sometimes more than you have to spare. Sara suggests taking someone with you.
  • Uncomfortable with a confrontation — You might be afraid of getting the doctor angry, this person who understands what lupus does more than anyone you know. But if you ignore your need to object, the doctor might miss something important. Sara suggests trying to look at the visit as a collaboration rather than a confrontation, knowing that you do know best when it comes to your own body.
  • Don’t want to hear the answer — Sometimes we don’t want to know so don’t want to ask. Sara’s example: she didn’t want to hear that her symptoms seemed to get worse when she worked long hours because that might mean she would have to make a lifestyle change. But talking it through with the doctor helped her resolve the situation in a way she could live with.
  • Guilt – You are afraid and ashamed that you haven’t followed doctor’s orders. But thinking you have can lead to a treatment that isn’t right for you because it is based on false assumptions.
Take the time for this webinar — you’ll find yourself nodding and smiling as you recognize yourself in Sara’s descriptions of herself. If you have questions, don’t hesitate to email our Social Worker Jessica Rowshandel, M.S.W. at jrowshandel@lupusny.org. Please allow a week for Jessica to respond.

And click here to find out about how you can get a free calendar to put Sara’s suggestions for tracking your health into action. A Year of Health Planners was created by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to help people with lupus and other conditions coordinate their care. Lupus LA, the West Coast Division of the S.L.E. Lupus Foundation, was one of four organizations selected to pilot test the dissemination of the health planners.

Here's a link to the S.L.E. Lupus Foundation website, and the one-hour webinar itself.

Wednesday, January 23, 2013

Figure Skater Kristi Yamaguchi - inspiring to say the least!

Sometimes, I run across a story about someone famous, and I think, "How did I not know that!?" I thought that exact thing when I read the wonderful article about Kristi Yamaguchi, Olympic figure skater, in a recent issue of Guideposts Magazine. The story itself is a great account of how she overcame her fear of speaking in public, but the paragraph that blew me away is the fact that she was born with club feet! In fact, she was in plastic casts for the first 18 months of her life, and then wore special corrective shoes that were connected with a metal bar. Can you believe that same little girl went on to perform in one of the most elegant and graceful sports, supported by those very same feet? How amazing is that?

It's snippets like this that remind me, no matter what hand we're dealt, we are capable of accomplishing just about anything we put our minds to. I know that life with a chronic illness seems to be too much to bear sometimes. I realize that a disease like lupus causes sidesteps, missteps, and steps backward. But despite how tough the road may seem, we can still make progress. We can still improve our life with lupus, make things happen, be fulfilled, and feel accomplished. Let the fact that Olympic Gold medalist and World Champion Kristi Yamaguchi didn't let her obstacles deter her from striving to reach her goals!

Here's the story - enjoy!

Monday, January 21, 2013

It's a Patent Party!! Take 14% off your next Pillbag purchase.

Woohoo! Two of my patents have been approved! The designs of both the Pillfold and the Pillpouch are now legally protected and cannot be copied without repercussion. Yippee!

In honor of the recently issued 14-year patents, I invite you to shop Sara Gorman's Pillbags between Monday, 1/21/13 through Sunday, 1/27/13, and enjoy a 14% discount. Just type in the word "PATENT" in the discount code during checkout.

So what does patent protection really mean?  I tend to think of it like I do plaquenil.  Taking plaquenil on a regular basis helps keep my disease activity at bay. It doesn't guarantee that I won't flare, but it certainly deters my symptoms from becoming active. With patent protection, there's no guarantee that no one will copy the design of my beloved pillbags, but ideally, it will deter them from trying. At least it should make those no-good forgery artists think twice! 

Enjoy the sale, and don't forget to add the discount code!

Friday, January 18, 2013

Buying a Pillbag just got easier...on Amazon.com!

I'm pleased to announce that the entire collection of Sara Gorman's Pillbags is now available on Amazon.com. Just click here to see those stylish, little Pillbags all lined up in a row, and available for purchase. You can also type in "Pillbags" (one word) or "Sara Gorman" (two words) in the search function on Amazon, and up they pop. Now let's hope off the shelves they go!

And if you already have your beloved Pillbag in hand, perhaps you want to tell others what you think. Feel free to leave a review on Amazon, as it might help others determine if a Pillbag is the right bag for them!

Wednesday, January 16, 2013

Not crazy, not alone, and not sick forever? Three things we're definitely "NOT"!

There are two questions I never ask my architect: Are we driving you crazy and are we still your favorite clients? I don't ask because from time to time, we probably are, and we're probably not, respectively. But alas, that's the nature of working together on a major house renovation. Things are bound to get hectic, and as first-time renovators, Johnny and I are bound to ask silly questions, waste some time, and second-guess ourselves.  In fact, I suspect my architect's answers to the questions above change on a daily basis, depending on the voice mail messages from me in his in-box, and the number of emails we've exchanged before noon. Thus, I prefer not to ask, so then I don't know. For sure.

There are a few questions I no longer ask myself about lupus, too. Not so much because I don't want to hear the answer, but primarily because I have to trust myself that I already know the answer. Here they are:

1) Am I crazy?

Of course not. It's lupus and its symptoms that are crazy...not me. The way those debilitating symptoms, painful side-effects, or drastic medications make me feel shouldn't be ignored, much less denied. They are absolutely, positively real - and I shouldn't pretend otherwise. For instance, was I crazy for feeling so down and out about my hair loss? No way. I'm wasn't imagining it, and it WAS a big deal. Was I crazy for feeling nervous, a bit reluctant, and maybe even a little embarrassed about approaching my boss regarding an accommodation at work? Of course not. I think that's one of the hardest things one has to do in regard to a chronic illness. The task shouldn't have been underestimated. Am I crazy for feeling anxious about starting a new medication? Are you kidding? New side-effects, new limitations, new requirements - you never know what you're going to get, and that can be, ahem, a tough pill to swallow. (Come on now, you knew where I was headed!)

2) Am I alone? 

Absolutely not. I've met and talked to enough lupites around the world to know that I'm not the only one whose life is chock full of lupus trials and tribulations. It can be tough to negotiate the world of a chronic illness. But the consoling news is that for almost every issue we find ourselves up against, there's someone else out there who's felt the same way or experienced the same thing.  The ideal situation is to connect with those people. But until them, you just have to believe that you're in good company.

3) Am I going to feel like this forever? 

No way. Emotionally, physically, mentally, spiritually - I've changed one hundred and eighty degrees, three times over since being diagnosed with lupus. While we can't necessarily predict symptom activity or the trajectory of a disease, I believe we can better prepare ourselves for the physical and emotional changes our body experiences, thus arming ourselves with positive, productive methods for combating our disease. The goal? To courageously and definitively live well, despite lupus.

Monday, January 14, 2013

Lupus napping antics, by Sara Gorman

I tried to get sneaky with lupus this weekend, and it didn't turn out so well. No casualties, thank goodness, but I learned that my body's sleep schedule isn't to be toyed with!

I woke up on Sunday morning just before 8am to the sound of little footsteps coming our way. Both girls were up, and while I normally would call an "8 am wake up call" a pretty good deal,  I'd gotten to bed later than I'd hoped Saturday night. So I was tired. Not too tired...just a little groggy.

Nonetheless, the girls were raring to go. I got up, got breakfast going, and went through our normal morning routine with ease. But by about 11am, I knew my afternoon nap was going to be a good one. We'd decided to go to church later in the evening, so we had the whole morning and afternoon free, and my bed was calling. Knowing that I was tired, Johnny offered to take the girls out for lunch, and I jumped at the opportunity to take an early nap. My family was out the door by 11:45am and Darwin and I were in bed, under the covers by 11:46 am. I slept just under two hours, and it was glorious. I particularly looked forward to the idea that I would be rested for the remainder of the afternoon. Putting Bernadette down for a nap was a cinch...because I wasn't counting down the minutes until I could rest, too. What's more, Deirdre still wanted some down time, so I found myself wide awake and feeling oh-so-productive during the three o'clock hour. What a switch!

So the trouble didn't start at 3pm. Nor did it start at 4pm, or even 5pm. It started between 5:30 and 6pm, when the effects of that glorious late morning nap started to wear off. I hadn't considered the fact that if I went to bed almost three hours earlier than usual, I'd be tired three hours earlier than usual at the end of the day. What's more, I hadn't factored in an extra cat nap later in the afternoon. Wouldn't that have made all the difference? Probably. But I was too taken with the notion that I had the afternoon free. Doh!

Thus, this post is short and sweet, written at the wee hour of 8pm last night. No need to push any further...I feel like I've been up for days, and I learned my lesson. Once again, the hard way!

Friday, January 11, 2013

Listen Up, Doc! Video - Thanks, LFA Philadelphia TriState Chapter!

Remember when I visited the fabulous folks in the LFA Philadelphia Tri-State Chapter at the beginning of October? They put together a video of my key note address - presentation notes and all. Take a look when you have the chance, and be sure to listen up to the questions posed by the audience throughout my talk. We had great crowd-participation. I appreciated the warm welcome, and the invitation to speak!


Wednesday, January 9, 2013

Indestructibility isn't all it's cracked up to be

Destroyed. That's the current condition of my fingernails, since I removed the indestructible gel nail polish I blogged about a few weeks ago. In that last post, I really did consider adding a disclaimer that said, "I have yet to experience the nail polish removal process...so please stay tuned", but I was just so taken with the polish that I convinced myself it would be an uneventful one. Well...I was wrong.

I've been nursing my nails back to health for about two weeks now...ever since I had the nail salon remove my second round of gel polish. I "removed" the first round myself, if you can call it that...which didn't go so well. But I was headed to the salon for another gel manicure a few days later, so I didn't panic. But having the professionals remove the polish the second time around still left my nails in complete ruin. What a downer!

Now, I'm not saying a gel polish manicure (similar to shellac polish, which you can read about here) is a bad idea. My nails just can't handle it more than a couple times a year. Turns out, most of my girlfriends say the same. Interesting how the truth eventually comes out!

So it seems a strong, unbreakable outer shell really isn't all fun and games, is it? And thus, my analogy between indestructible nails and life with lupus continues. (I know you were hoping it would!)

How many times have I looked totally healthy and perfectly put together on the outside (i.e. indestructible), when all the while my internal organs were literally falling apart on the inside? I remember countless examples when my disease activity was ramped up to the hilt, but there wasn't a single external sign that lupus was afoot. How conflicted was I when that would happen? You feel sick, you ARE sick, but you don't look sick. How do you play that off? How do you explain it to others? How do you reconcile that within yourself?

Over time, I learned and decided to take the following approach:

1) Listen to my body and act accordingly. Regardless of how well I look, or how healthy others think I may be, if I'm tired, swollen, or achy, I do what I need to do to make myself comfortable and get myself well. No matter how strong and resilient I want to be, I have to remember the wreckage that's going to be left behind if I don't act responsibly.

2) Don't worry about what others think. I know - it's the oldest advice in the book, and probably the hardest to follow. But really - if I worried about what my babysitters thought about me lying in bed for two hours every afternoon, or what my friends thought about me not being able to make plans in the afternoon, or what anyone thinks about me taking a slew of medication, hiring an au pair to help me stay well, or skipping out on volunteering at Deirdre's school because I can't spread myself too thin, I'd be a mess. I wouldn't be able to keep this blog, promote my book, sell my pillbags, OR most likely have my kids, because I'd be too worried about putting on a good show (i.e. an indestructible one) to stay healthy. And how unproductive, stressful, and pointless is that? So when people don't understand, don't feel like you're alone. Find your way to places like my blog, an LFA patient forum, or a good support group, and remind yourself that you're on the right track. (Check out "The Fairy and the Wolf" for more on this exact sentiment. The illustrations and text say it all!)

3) And just as importantly as #1 and #2, I appreciate the fact that I don't look sick. Listen - I know what it's like to have to convince people that I'm sick. I understand first-hand how difficult it is to hear the, "But you don't look sick" comment, while enduring the silent "So you shouldn't act sick" judgment.  But if we're going to find even a sliver of hope in the deep dark crevices that lupus often brings, we're going to have to look in the mirror, and say a teeny tiny thank you that, for the most part, we don't wear our disease on the outside. (Goodness knows how unflattering "damaged kidneys", "fluid around the lungs", or "blood clotting issues" might look!) I know having an invisible disease can sometimes make life more difficult than if you could spy from a mile away that we are sick, but 99% of the time, I'd rather fly under the radar.

So there you go. I think that's about all I can squeeze out about gel nail polish and living well, despite lupus. But you never know...




Monday, January 7, 2013

Despite Lupus Webinar tomorrow - Tues, 1/8/13 at 12:30pm!


I've just put the finishing touches on the S.L.E. Lupus Webinar for tomorrow afternoon, and I'm hoping you can make it! Be sure to take a moment to click here to registerand click here to make sure your computer is set for the webinar. It won't take but a few moments. And get your questions ready. I'll look forward to hearing from you during the event. There will be opportunities for audience polls, write-in questions, and more! 


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Details: 

When you have a chronic illness, going to the doctor can seem like a full-time job. That’s why it’s so important to make each and every appointment count. In Listen Up, Doc!, you’ll learn tips on how to effectively prepare for and manage your appointments, pointers that go well beyond “make a list of questions”. And you’ll hear, first-hand from a patient-author, how to avoid the pitfalls that might be preventing you from getting the most out of your appointments. The goal?  Effective appointments that equal effective treatment, every single time!

Tuesday, January 8th, 2013. 12:30 to 1:30pm

Attendee Takeaways:

•    Learn how to prepare for doctor’s appointments
•    Learn how to make the most of your doctor’s appointments
•    Avoid pitfalls at doctor’s appointments
•    Effective Appointments = Effective Treatment

Who Should Attend:
•    People with lupus, particularly newly diagnosed 
•    Spouses and loved ones of people with lupus
•    Caretakers
•    Anyone with a chronic illness

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New drug for RA just approved - Xeljanz


Great news in the world of Rheumatoid Arthritis! A new oral medication for the treatment of the disease has just been approved.  Below you'll find snippets from a press release, and you can read more about the new drug in this great article from Arthritis Today.

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New rheumatoid arthritis drug targets NIH-discovered protein

The U.S. Food and Drug Administration recently approved a new oral medication for the treatment of rheumatoid arthritis that represents a new class of drugs for the disease. The drug, tofacitinib (Xeljanz), provides a new treatment option for adults with moderately to severely active rheumatoid arthritis who have had an inadequate response to, or who are intolerant of, methotrexate, a standard therapy for the disease.

Tofacitinib is from a new class of drugs developed to target Janus kinases. [R&D done in the early 90's led to the idea] that drugs blocking Janus kinases would suppress the immune system and might be protective against the damaging inflammation of rheumatoid arthritis and certain other autoimmune diseases.
The approval of tofacitinib represents the first time in a decade that the FDA has approved an oral disease modifying antirheumatic drug, or DMARD, for the treatment of rheumatoid arthritis. This broad class of drugs slows or halts the progression of damage from the disease, rather than merely providing relief from symptoms. Unlike biologic treatments for rheumatoid arthritis — which are also DMARDs and target immune system proteins — tofacitinib is a pill, not an infusion or an injection. It is the first Janus kinase inhibitor to receive an FDA approval for rheumatoid arthritis.
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Be sure to read the entire article from Arthritis Today here!

Friday, January 4, 2013

"What am I?", says the Pillfold to the Pillpouch

We're having a bit of an identity crisis over here at Pillbag headquarters. Never you worry, though - we know who we are, and where we're going. It's just that Amazon.com is asking for particulars on what exactly a pillbag is, so we're actually having to, you know, think about it.

So if you had to pick a term to best describe the Pillfold, what would you choose?

A) Medication organizer
B) Pill organizer
C) Pill bag
D) Toiletry bag
E) Pill case
F Pill holder
G) Pill container

See? It's a bit of a quandary, isn't it?

I guess I should also ask this: if you were searching for the Pillfold or Pillpouch online (or on Amazon.com specifically), how would you search for it? What terms would you think of to find these swanky little medicine bags?

(Oh, right! Maybe I should add "Medicine bag" to the list of choices above. It seems the possibilities are endless when it comes to describing stylish bags designed to carry medication, huh? )

I'm the first to admit that I don't function very well without my Pillfold by my side. Every few weeks, I get a little lazy (or is that cocky?), and instead of counting my pills at the beginning of the week and filling my Pillfold for seven days, I decide to just function out of my Pillpouch. Thus, I just take the appropriate pills right from their bottles the morning of. And, boy, does that get confusing! Half the time, I find myself at
11 am, struggling to remember whether or not I've taken my pills that day. Did I take them with orange juice this morning? Or was that yesterday morning? Did I take them with breakfast, or was it too hectic getting the girls ready? When you've taken pills every morning and every night for 12 straight years, it gets hard to distinguish one day from the next. (And yes - it's been almost 12 years exactly since I was diagnosed with lupus. Still here and still standing...and still taking medication, albeit half as much as I used to. And no longer out of a clunky, plastic pill box, thank you very much!!)

I appreciate your comments and emails on this one. Your feedback is always appreciated!


Wednesday, January 2, 2013

Potty training and Lupus: Learning to expect the sidestep

Baby Bernadette, my two-year old, is potty trained. She only turned two in October, but since the middle of July, she's been asking to use the potty. So finally in September, I decided to just give it a go. (You can read more about that here.) I thought it was a little early, and I was in no hurry to get her into panties, but she really seemed ready, so we did it. And she came through with flying colors.  Turns out her 4-year old sister is a very good teacher! She's been in panties every since, and the only time she's in a pull up is when she sleeps...but I even phased those out during nap time because she is consistently dry. At least, she was consistently dry.

About a month ago, Bernie started waking up from her nap around the usual time, announcing that she had to go potty. But it wasn't that she had to go potty, it was that she'd already gone potty. Oops. No matter how fast we went in to get her once she woke up, she'd already done the deed (#1 and #2, mind you). She'd just come off a stomach bug, so I didn't think much of it. I figured she was just getting back into her routine, and she'd come out of it. But she didn't. About three to four times a week, this became our afternoon ritual.

And I have to tell you, I wasn't ready for it. Potty training Bernadette had been SO much easier than Deirdre, and I thought I was home free with this one. There weren't nearly the tears, the battle of wills, or the resistance that I experienced the first time around, so when this little setback occurred, I was bummed.  I second-guessed myself for training her so early. I toyed with the idea that she had an infection that was causing her to have accidents. I thought maybe it was something she was eating, something I was doing, or something I wasn't doing. I wasn't distraught over it, but I definitely gave the issue more air time than it deserved.


As you can imagine, set backs are not my thing. I like making progress, moving forward, building from one day to the next. I like working toward a goal and then reaching it. The setbacks can happen as I'm making my climb, but not once I get there. If I've put my time in along the way, I expect to make it to the top...and stay at the top.

The same thing used to happen with lupus, too. I'd be in an awful flare - completely down and out. And then I'd see a flicker of light at the end of that awful tunnel of pain and suffering. One day I'd experience less swelling, the next day, less joint pain. The following days after that, I'd start to see the return of my energy, and before long, I'd make the slow, yet consistent climb back to the land of the living. I'd wake up one day and suddenly feel good again - maybe not "great" - but so much better than I'd been that I wouldn't know what to do with my time, energy or both.

And that feeling would last - maybe for a week, maybe even two or three - but my expectation would always be that it would last forever. Time after time, I struggled to acknowledge that physical setbacks might continue to occur, even after a flare was over. No matter how much time I'd put in being sick, I failed to see that I might still have to put in a little bit more...simply given the unpredictability of a disease like lupus.

Of course, over time, I've learned to accept those hiccups with a little more grace and style than I used to.   In fact, at a Despite Lupus workshop a few summers ago, I described the trajectory of life with lupus as "two steps forward, and then a sidestep", rather than the traditional " two steps forward, one step back." I dislike disease activity just as much as the next lupite, but I have learned that it's not something to fear. It's merely a different way of looking at life. You work toward your goals, goals that are just as lofty and challenging as the next person's, but you just know that you may have to make room for a sidestep or two along the way. I've found that if you expect them, they're not nearly as inconvenient or upsetting.

Which brings me back to Bernadette.

Looking for some tips on potty training sidesteps, I called the nurse's line at the pediatrician's office. They reassured me that at Bernie's age, it's the most normal thing in the world to have a set back. (Of course it is.) They even suggested I put her in pull ups all day long if necessary. I assured them that Bernie would NEVER give up her Princess Panties on a daily basis (talk about tears!), but I would consider putting Bee back in a pull up during nap time...both selfishly for easy clean up, and so she wouldn't be so upset about ruining her panties.

Of course, her potty training hiccup has come and gone. Here we are a month later, and Bernie's back to sporting a dry pull up at nap time 99.9% of the time. Yeah, that's my girl. Sidestep, maybe. Backtrack, no way!