Monday, November 23, 2009

Looking back blues

I was recently looking through some old photos - from high school, college, and even my first few years out of school - and I was shocked. Those outfits! And that hair! Who in the world was in charge of my "look" back then? Thank goodness those pictures aren't digital, otherwise I'd feel obligated to post a couple of them here.

But my question is this: at what point will I be able to look back, and not say, "Did I really pose for a picture wearing that?" Some of those pictures weren't taken that long ago, and I can even remember choosing to wear some of those outfits. Truth is, I thought I looked pretty darn swanky. And yet, I look back now and think, "What was I thinking?" Take what I'm wearing right now. Am I going to look back in 10 years and say, "That is the ugliest sweater ever"? I don't think it's bad. Time will tell, though, won't it?

I had a similar experience looking back at some of the spreadsheets from my early lupus years. My chronic control spreadsheets have been the topic of conversation among Despite Lupus readers I recently took a peek at my files for reference. Flipping through, all I can say is, "How could I have let myself get so sick?" I can't believe the amount of pain and discomfort I allowed myself to experience! When I look at the sea of check marks lining the pages of my spreadsheets - I'm appalled that it took me more than a month or two to figure out that my version of "okay" was anything but.

As I flip through the charts, I'm amazed at the revealing notes that I jotted down in the the side note where I say, "Headache and vomiting, from work to mall, 30 min nap, to cooking class and back to mall." You think that might have been a little much to fit in after a full day of work, particularly when one is vomiting? Of course!

The missed naps, the crazy work schedules, on top of the symptoms that just wouldn't quit -at least I was being honest as I tracked my life back then. It's obvious that I was pushing my body beyond its limits, but from one day to the next, it was nearly impossible for me to grasp how sick I really was. I was just doing my best to get through the day. And whether it was swollen joints, fevers, swollen glands, or pain in every joint in my body, I'd become accustomed to that level of discomfort. I didn't know what it was like to feel good anymore. Of course, I didn't like feeling awful...but I just didn't think I had a choice. I saw life with lupus as a test - if I could juggle those symptoms while maintaining my busy, driven lifestyle, I was a success. If not, I was a failure.

Here's an excerpt from my book, Despite Lupus, which illustrates this very point:

breaking the spell

At some point along your journey, you’re bound to lose your objectivity, too. Given the myriad aches, pain, swellings, rashes, and fevers to which you’re subjected, do you really know what “good” should feel like anymore? I’m not asking if you can describe the feeling; I want to know if you remember what it actually feels like. I bet it’s been so long since you felt 100%, you no longer can imagine that exact sensation. Passage of time, conditioning, and relativity have recalibrated the measuring stick you now use to determine how much hurt is enough, and how truly sick you are. The gauge you use today can only be the pain from yesterday, but how insufferable was the pain even then? Maybe your complaints are fewer than they’ve been in the past, but why should functioning with any health complaint suddenly be acceptable? An objective assessment of your health is no longer possible because you’ve reduced your expectations to accommodate the changes in your functionality and appearance. The ailing, broken-down, failing body you see in the mirror somehow looks more familiar than not. It’s as if “normal” has been redefined to mean “that which is bearable” and the ache in your hip or the joint pain in your hands is now customary. Your standards have been compromised.
Now it’s time to reconsider what “normal” should really look and feel like

Looking at those charts now, the only failure I see was my inability to stop. To stop and say, "Enough." To stop and say, "Let it go." To stop and say, "I'm worth more than this."

Don't ever forget - you are, too.

Friday, November 20, 2009

New LFA Video on Lupus Treatments

This is definitely worth watching...and here's the link for a few other videos the LFA just put together. Enjoy!

Wednesday, November 18, 2009

May the force be with you

My apologies for the belated Halloween pictures from Deirdre's 2nd annual spooky holiday. She, of course, was a big hit as Princess Leia...and her dad and I were in heaven walking her around the neighborhood.

Darwin, or should I say, "Yoda", enjoyed the stroll as well.

By the end of the evening, most of Deirdre's costume had been stripped away - the wig went first, then her belt, and next came the tunic.

But isn't that the sign of a good night of trick or treating?

Monday, November 16, 2009

Bittersweet: A tribute to Ursula Williams

Most of us have a handful of teachers or professors who have made a significant impact on us at one time or another during our academic careers. I certainly had a couple at Notre Dame, one of whom was none other than the wonderful, the fabulous, Mrs. Ursula Williams. I never took a class from Mrs. Williams, but she was my employer for three years during college, becoming a friend, a confidant, and a mentor. She ran the Language Resource Center (aka Language Lab) where I worked at ND, and boy, was it the greatest on-campus job in the world!

She had this personality that made you want to come to work. You wanted to do a good job for her, exceed her expectations - and even hang out with her after work, chit chatting over a few drinks. She was simply a wonderful person, and she taught me so much about being "me", helping me mature as an employee, a student, and as a person, without even saying a word. What a positive influence she was!

So, given the fact that I'm heading back to campus this week, I, of course, looked her up so I could say hello. That's when I found out the distressing news that she'd passed away from cancer several years back (2004.) Oh, Mrs. Williams! How I'll miss you! That incredible sense of humor, that jolly disposition, and the lessons you taught me will never be forgotten.

Now - the reason I'm choosing to write about my very dear friend Mrs. Williams, is that in contacting another mutual friend of ours, I've come to find out some very, I'll call it enlightening, news. It turns out that my mentor, my friend, my confidant, before being diagnosed with the cancer that took her life, was diagnosed with lupus. How about that!!!! I can't really express how that makes me feel...just so incredibly touched, you know? Just to know that I was in such good company encourages me to keep on keeping on. How can I not do everything I can to live well with lupus? I owe it to Mrs. W.

So here's to you, Mrs. Williams - I bet you would have shown me the ropes with this lupus thing, too. You appeared to be living well from the first moment I met you. Thank you for paving the way.

Friday, November 13, 2009

Passing the torch

In the past, I've blogged about the fact that I can get a bit, shall we say, obsessive about uncovering the causes of my lupus symptoms. It's been awhile (thank goodness!) since I've experienced anything "unexplained" - like fevers, lip swellings, or hair loss - and even longer since I've been truly guilty of hyper-focusing...but when it used to happen, I would spend way too much time and effort trying to uncover the root cause of the symptom in question.

But it seems to be a natural tendency to have when you're dealing with lupus. Since there are so many symptoms/side-effects of the disease, it's hard not to do what you can to figure out what's causing what. Of course, just like everything, there's a limit to how much energy you can spend before the law of diminishing returns kicks in. Even the most well-intended energy can end up causing you unnecessary stress and anxiety...and that's never good.

As I said, while it's been awhile since I've experienced any mysterious, unexplained symptoms, baby doll Deirdre was carrying the torch for almost two months. Right around Labor Day, I noticed she developed a little rash on her chin, which ended up staying around and spreading. Poor little lady! She didn't care two hoots about the rash (which came and went periodically) - and she certainly didn't sacrifice one iota of cuteness, but as a mother, I just knew that I had a responsibility to try and uncover the cause. ( the kind of mother I am with the personality I have, I had to at least make an attempt.) So we tried everything. I first went to foods - ruling out tomato sauce, citrus, and watermelon. At various points in the past 8 weeks, she's been off maple syrup, corn, lunch meat, orange juice, eggs, sugary treats (like donuts...b/c her rash seemed worse after a few bites of donut one weekend), and about a dozen other foods. Of course, she didn't know these experiments were going on, so thankfully, she was quite the willing participant. Okay...she was a down right guinea pig (or is that guppy?). But no harm came to her...but no resolution either. Then we mentioned it to the doctor at her yearly checkup, who came up with another slew of things to look into: was there fluoride in her toothpaste (no), did she have any allergy to plastic toys (no), could it be a new detergent, softener, etc. (no), was it a certain fabric or clothing (no)...and on it went. I'm telling you -it's a good thing I'd been down the obsessive-symptom road before, because I was able to curtail my efforts. But while I didn't spend a ton of time trying to figure this out - I sure did think about it a lot.

I'd finally had it this past weekend. Deirdre and I went away for a fabulous girls' weekend with her grandmother, aunt and cousin, and the rash was at its all-time worst. On top of that, she started tugging on her ear and had a mini-meltdown (which she never has), so I decided to take her in to the doctor the day after we returned. I thought - oh good - now the doctor will see this rash in its full form. Of course, she woke up the next morning, the day of her appointment, and the rash was practically gone. Of course! Doesn't that always happen when you're going to the doctor? The symptom you're just dying to show your doctor subsides the day you go in. Ugh!

Nonetheless, the good news is that the rash hasn't come back since...and the doctor's diagnosis this time? Teething! That's the cause of the ear tugging, the testiness, and that nasty rash, in her opinion. So all of my experimentation was unnecessary. Good thing I'd ratcheted back on my R&D. One life's lesson learned!

Wednesday, November 11, 2009

I'm off to the Golden Dome!

Despite Lupus is hitting the road again - back to the cornfields of Indiana. Not for another hometown visit this time. Rather, I'll be touching down in lovely South Bend, IN, home of my alma mater, the University of Notre Dame.

I'm so excited to be returning to campus. It's been a long time since I've been back - but the bookstore is welcoming me with open arms. They've stocked my book, open their doors for a book signing, and extended the welcome to include a "Meet and Greet" in the bookstore cafe immediately following the signing. I couldn't ask for more! Here are the details. If you're in town, I'd love to see you!

WHEN: Thursday, Nov 19th, 4-6pm (Meet and Greet from 6-7pm)
WHERE: Hammes Notre Dame Campus Bookstore, University of Notre Dame, Notre Dame, IN.
WHAT: Despite Lupus book signing - meet the author and chat with LFA Indiana President Phyllis Simko, who will be joining me for the event. Oooh! A celebrity!

I'm finding it odd to return to campus under such different circumstances. Sure, I'm married now, and I'll be bringing baby doll Deirdre (suited up in her ND attire, no doubt!), but what's stranger still, is that I'll be going back to promote a cause that I hadn't even heard of when I was in school. Today, lupus is a common household term for me, one that I've defined and described thousands of times. (I've even written a book about it!) It makes me all the more motivated to return to campus, to help spread awareness, educate and inform others about this chronic, often debilitating illness. Most importantly, I'm proud to share the message that life can go on, despite lupus!

Pass along the word to those of you with friends and family in the Northern Indiana area. I'm also doing a luncheon event in Michigan City on Saturday, Nov 21st. Not sure if there's still room for that one - but if you're in the area, I'd love to hear from you!

Monday, November 9, 2009

Have thoughts about "Despite Lupus"?

Chime in on the book discussion taking place this month on Shelfari. Sponsored by My Life Works Today, be sure to log on to Shelfari and see what others are saying about the book, the author, or life with lupus in general.

I'll be participating, so this is a perfect opportunity to ask this first-time author any questions you might have - about writing, publishing, or about my experience with the disease. As I've said before, "my life is an open book," so feel free to ask!

Friday, November 6, 2009

Movin' and Groovin' - Guest blogger

I'm pleased to welcome guest blogger Suzanna Adams, Physical Therapist from the OSU (Ohio State University) Medical Center. Suzanna works in the Out-Patient Rehabilitation Services, and I recently asked for her two cents on physical therapy/exercise and lupus. Here's what she has to say - all great stuff!

Exercise and Lupus

Everybody wants to be fit/healthy/lose weight/look better/feel better/have less stress/be happier. People with fancy degrees have performed double-blind studies showing that exercise can achieve all those things and more. If you have lupus or another inflammatory disease, exercise has been shown to decrease painful joints, decrease susceptibility to fatigue, decrease inflammation, minimize function loss during flare-ups, as well as improve mood. Interested?

General rules:
1. If it hurts, don't do it. Seriously. It is rule #1 for a reason. If what you are doing is causing pain, then that activity is likely causing injury to your body. That will allow you to take 1 step
forward, to go 4 steps backward. Exercise can be hard or uncomfortable, but it should NOT be painful.

2. Do something you enjoy. Some psychotic people love to run marathons, most of us don't. Your chance of getting the benefits of exercise greatly increase if you actually do the exercise, which
greatly increases if the exercise is something that you enjoy. There are millions of options, you don't have to run with the psychos.

3. Always check with your doctor before starting an exercise program, especially if you have any heart or lung involvement.


1. Stretching exercises: Stretches can be uncomfortable, but they should never be painful. Here are some of my favorites that I recommend for most people 3 times per week. All stretches should be held for 30 seconds, done 2 times on each side:

a. Hamstring stretch: lay on your back, bring one leg up, hold behind your knee and try to straighten your knee. You should feel tightness behind your knee. You can also use a strap or towel around your foot to hold this stretch.

b. Single knee to chest: lay on your back, starting with both knees bent, feet flat on the floor/mat/bed, bring one knee to your chest and give it a hug.

c. Gastroc/Soleus stretch: stand facing a wall, place one foot back, keeping toes pointed toward the wall and back heel on the ground, lean toward wall.

d. Doorway stretch: standing in a doorway, raise both hands above head onto door jams, lean forward until stretch is felt across chest. You can also take yoga or other classes through the Arthritis Foundation.

2. Cardiovascular exercise: Everyone (that includes you) needs exercise at their target heart rate for 20-40 minutes, 3 times per week. Your target heart rate is between 60-80% of your theoretical maximum heart rate (roughly 220 minus your age). Try walking, swimming, bicycling, low-impact cardio machines at the gym (e.g. elliptical trainers), cross country skiing, aerobic dancing, roller blading, ice skating, whatever it takes to maintain that heart rate. Heart rate monitors are great for keeping you on target.

Strengthening exercise: You don't need fancy equipment. You can strengthen you legs by doing lunges, wall slides, squats, step-ups, heel raises or leg raises on a mat. You can strength your core by doing sit-ups, plank, or bird-dog exercises. You can strengthen your upper body by doing push-ups at a wall, bicep curls, or tricep presses.

Special Lupus concerns:
Corticosteroids: Another reason to hate them: Steroids can weaken tendons and ligaments. If you are on high-dose steroids or have used low-dose for a long time, be more cautious with strength training. BUT, steroids also can increase risk for osteoporosis, so you still need to
do some weight bearing and resistance exercises.

Fatigue: It will take a little practice to see how much exercise your body can tolerate. A good rule of thumb is: You should feel as good 2 hours after you stop exercising as you felt before you started exercising.

Flare-ups: Limit your cardiovascular and strength training, but continue range of motion exercises. Don't take more than 2 days off in a row.

Thanks again, Suzanna. From one college roomie to another, I appreciate you sharing your expertise with us!

Wednesday, November 4, 2009

Benlysta update - good news all around!

Here's the latest in lupus drug research news:

Human Genome Sciences announced that its drug BENLYSTA™ (belimumab) met its primary endpoint in BLISS-76, the second and final Phase 3 trial in seropositive patients with systemic lupus erythematosus (SLE).

BENLYSTA is the first drug for lupus to reach Phase 3 and achieve positive results, in the largest randomized placebo-controlled clinical trials ever completed in patients with SLE. Positive results from the first BENLYSTA trial, BLISS-52, were announced in July. The data represent an important milestone for the lupus community, which has not seen a new treatment for lupus approved by regulatory authorities in more than 50 years.

HGS and GlaxoSmithKline plan to file marketing applications in the United States, Europe and other regions for BENLYSTA for the treatment of SLE in the first half of 2010.

Here's a longer version of the same, if you're interested in the gory details:

Alliance for Lupus Research

Findings from the BLISS-76 Phase III clinical trial of BENLYSTA™ (belimumab) represent an important milestone in the development of new therapeutic options for patients with systemic lupus erythematosus

Human Genome Sciences (HGS) and their partner GlaxoSmithKline (GSK) released very encouraging new results from a second Phase III trial, BLISS-76, of its investigational lupus drug BENLYSTA™ (belimumab). In the study, BENLYSTA met its primary efficacy endpoint of superiority versus placebo after 52 weeks.

BENLYSTA also met the primary endpoint in the first of the two pivotal Phase III trials, BLISS-52. The Phase III development program for BENLYSTA is the largest clinical trial program ever conducted in lupus patients.

“The Alliance for Lupus Research (ALR) is thrilled with the successful completion of the second Phase III study of a potential new lupus drug,” explains Barbara Boyts, President of the Alliance for Lupus Research. “The Bliss-76 trial represents a critical step forward for people with lupus everywhere. Our hope is that the success of this trial will support the FDA approval of the first new drug for lupus in 50 years.”

BENLYSTA specifically recognizes and inhibits the biological activity of B-lymphocyte stimulator, or BLyS®, a naturally occurring protein that promotes the development of B-lymphocyte cells into mature plasma cells in systemic lupus erythematosus. Plasma cells are a type of white blood cell that normally produces antibodies, an important component of the body’s defense against infection. In autoimmune diseases such as lupus, elevated levels of BLyS are believed to contribute to the production of auto-antibodies that attack and destroy the body’s own healthy tissues, causing the inflammation that is a characteristic of the disease. Previous clinical studies have suggested that BENLYSTA can reduce auto-antibody levels. Now, the results of the Phase III trials suggest that BENLYSTA can also reduce disease activity.

The BLISS-76 study is ongoing for 24 more weeks. Additional trial data will be available at the conclusion of the study period. HGS and GSK are expected to submit marketing applications for regulatory approval in the United States, Europe and other regions in the first half of 2010. If approved, BENLYSTA will be the first in a new class of drugs called BLyS-specific inhibitors.

More Than 10 Years of Significant Research Supported

The Alliance for Lupus Research supported some of the important basic and translational research on the molecule targeted by BENLYSTA, BLyS, also called B cell-activating factor (BAFF). Research conducted by Dr. William Stohl at the University of Southern California and Dr. Robert Carter, currently the Deputy Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, established BLyS/BAFF as a potential therapeutic target for patients with systemic lupus erythematosus. Their research, funded through the ALR Target Identification in Lupus Program, along with research by many other committed immunologists and lupus investigators, set the stage for clinical development programs and clinical trials that are now resulting in documented decreases in lupus disease activity. The ALR has funded more than five million dollars in B-cell research in the past ten years.

“The Alliance for Lupus Research remains committed to supporting the important research that will ultimately lead to a detailed understanding of this most complex autoimmune disease,” says Mary K. Crow, M.D., the Alliance for Lupus Research’s Scientific Advisory Board Chair. “The diverse research funding programs developed by the Organization, including its International Systemic Lupus Erythematosus Genetics Consortium (SLEGEN) and its Functional Genomics and Genetic Pathways grants, along with the Target Identification in Lupus grants, are helping to identify other drug targets like BLyS that may ultimately contribute to the development of additional targeted therapies. These research efforts, along with the steadfast commitment of lupus patients who participate in important clinical trials, will result in new therapeutic options that lead to better patient outcomes.”

The Alliance for Lupus Research is the world’s largest charitable funder of lupus research. One hundred percent of all donations to the Organization support innovative medical research programs focused on preventing, treating and curing systemic lupus erythematosus or lupus, as the Board of Directors funds all administrative and fundraising expenses.

Monday, November 2, 2009

What are customers saying about the book "Despite Lupus"?

Find out by clicking on our new and improved "Reviews and Feedback" menu category at the top of the website. You'll still find reviews from doctors, LFA, ALR (Alliance for Lupus Research), and a Success magazine writer...but scroll down and you'll find dozens of comments from readers just like you! People trying to make it through life with lupus - and doing a darn good job of it.

To those of you who have taken the time to tell me what you think of the book - thank you! I love hearing from you, and I'm sure others will appreciate reading your feedback. Your comments have certainly inspired me, and I'm so pleased that you have connected with what I've written.

And if you haven't taken a moment to let me know what you think about "Despite Lupus", feel free to do so. You can email me, or post your comments on the book's Amazon. com page. Just scroll down to "Create Your Own Review" on Amazon. com and start typing. Any comments that might help others figure out if this is the right book for them - I'm all for it!

Don't forget to check out our updated "Great Doctors" menu category, too. We've added Nephrology to the list, and updated a listing or two. Have a great doc to add to the mix? Feel free to email me. I'm all ears!