Check out this great lupus site when you get the chance: My Life Works Today. MLWT hosted a guest writer event this month on their blog, and extended the invitation to Despite Lupus. How fun! The short interview with yours truly appears on Sunday, May 31st and will be up for a few days. Don't miss it!
Want to know a little bit more about MLWT? Here you go, directly from their website:
***
Our mission is to inspire individuals who are living with all forms of lupus and lupus-related illnesses by being a strong resource of opportunities reflecting the potential and well-being of our Oregon and SW Washington communities.
It is important to believe in our own abilities when managing our lives with S.L.E., otherwise referred to as lupus. Although it is still incurable at this time, it is possible to create a great life and not just view it as a sentence to be served. Lupus is a part of who we are, but not the only part and it is vital that individuals are offered resources to help them “get beyond” lupus to see their potentials that await them. As a means of supporting individuals to succeed in their wellness management, we designed this program to offer specific educational workshops, supportive resources and a social network made up of other local individuals who are also committed to designing their own self-care.
By utilizing the abundance of information already present through the internet, written media, existing programs and the participants themselves, MLWT gathers this information and creates a learning satellite community for individuals to draw inspiration from. Rather than reinventing the wheel, we are aiming to become a ‘local’ network hub for individuals to rely on as they strengthen their support ties and create personalized, self-directed resources. In the process, this program creates an on-going, action research format where the participants themselves will be instrumental in community education and health care reform by simply living well. The information, suggestions, questions and requests MLWT receives from you will help educate local social and medical service providers in working with you as you pursue your wellness goals.
We also offer information, discussion groups and presentations for the others in our lives such as family, friends, employers and co-workers so that they may gain a much clearer understanding of what they can do to provide us the support we need to be successful. Self-reliance is important and strengthening our networks, in turn, strengthens us and our healing capacities.
***
Be sure to check it out!
Friday, May 29, 2009
Tuesday, May 26, 2009
Overbooked!
Eight and a half years after being diagnosed with lupus, and I'm still learning what I can and cannot do. For the past two weeks, I've had at least two doctor's appointments per week - and you know what? It's too much! I rush around, trying to get out the door when my babysitter arrives at 1pm - dash over to the doctor - spend about an hour or more during the appointment - dash back home to try and fit in a nap - and it's just too much to do two days in a row. I barely get in an hour's nap. One day a week, I can skimp a little, but the cumulative effect of doing so two days in a row isn't good.
And, of course, the temptation to run other errands while I'm out is almost too much to resist. So I need to remind myself that the primary reason I have the babysitter is so that I can get in my nap. Anything else I'm able to accomplish beyond that is just a bonus.
I'm no stranger to limiting my activity - nor to the idea of setting boundaries for myself. In fact, years ago, Johnny and I figured out that we had to limit any sort of travel to one weekend a month...making sure that we never traveled on back to back weekends. There were plenty of events we (in particular, I) had to skip, but my restricted travel did wonders for my health. Today, I'm able to travel frequently, but I still make sure I get plenty of rest on either side of our travel days. No errands, no plans, and certainly no doctor's appointments! (In fact, I just changed an appoinment from this morning to next week - knowing that our travel plans this past weekend would leave me a little fatigued. No need to push it - got to rest up for my book signing!)
Whether it's travel, napping, the amount of sleep you get at night, or adhereing to a healthy diet, setting boundaries plays a big role in living well. Here's a snippet from my book, Despite Lupus, entitled, you guessed it - Setting Boundaries!
***
In 2003, when Kraft Food Inc.’s Nabisco group was brainstorming about new forms of dieting and healthy products, they asked online participants what the words “diet food” represented to them and how they made choices when they snacked. Kraft learned that customers didn’t feel they needed to deprive themselves or diet per se – what they really wanted was the ability to control how much they ate. Kraft obliged with 100 Calorie Packs, a line of small, one-person bags of Oreos and Ritz crackers. The results were stunning: In 2005, that product line racked up $100 million in sales. People loved the built-in self-control that accompanied he little snack packs by eliminating the need for willpower.
Example: naps
I quite often find myself “dieting” in other aspects of my life, invoking boundaries for myself so that I don’t have to decide how much activity, sleep, or stress is enough for one day. A few years into my struggle with lupus, it became apparent that about six or seven hours into each day, I completely lost my momentum. I hit a wall, and after that, I was useless. It was a point at which no amount of sugar, caffeine, or adrenaline could help. I was just too exhausted to do anything. If I was still awake, I walked around in a zombie-like state, pushing myself to function on empty. It was as if the last half of the day wasn’t mine anymore; it was lost to
fatigue, claimed without recourse. Not only did I lose those hours when I passed my point of total exhaustion, the hour or two before hitting this proverbial “wall” were futile, too. The last scraps of time before I totally lost it were spent fighting off the exhaustion while trying to accomplish the final tasks.
After much deliberation, I convinced myself that if I napped for a couple of hours in the middle of each day, early enough to fend off the “wall” yet late enough not to interfere with the most basic of daily activities, I wouldn’t be losing, but gaining time. As long as I got in two hours of sleep sometime around 5:00pm, I would be recharged enough to have a full evening ahead, restocked with energy, stamina, and clarity. A two-hour sacrifice seemed like a small price to pay to make each evening bearable again.
For a while, I treated my nap as an occasional occurrence, but I realized I didn’t have the willpower to nap when I needed to. I was too distracted by to-do lists and other things. I needed to set up a constraint for myself so that I couldn’t talk myself out of resting each day. Thus, I made it a mandatory part of each afternoon, whether or not I thought I wanted/needed a nap. (Oh, I kicked, screamed, and threw tantrums about going to bed in the beginning.) But, most days, I slept for a solid two hours or even more. It was obvious my body was exhausted (which is probably why I was so cranky to begin with), but I still struggled to force myself into bed each day.
Today, however, my nap is a welcomed part of my daily ritual. I no longer quarrel with myself as I’m lying in bed, swearing that I don’t really need to rest. Instead, I look forward to the moment when I can shut my eyes and regroup, confident in the positive result.
And, of course, the temptation to run other errands while I'm out is almost too much to resist. So I need to remind myself that the primary reason I have the babysitter is so that I can get in my nap. Anything else I'm able to accomplish beyond that is just a bonus.
I'm no stranger to limiting my activity - nor to the idea of setting boundaries for myself. In fact, years ago, Johnny and I figured out that we had to limit any sort of travel to one weekend a month...making sure that we never traveled on back to back weekends. There were plenty of events we (in particular, I) had to skip, but my restricted travel did wonders for my health. Today, I'm able to travel frequently, but I still make sure I get plenty of rest on either side of our travel days. No errands, no plans, and certainly no doctor's appointments! (In fact, I just changed an appoinment from this morning to next week - knowing that our travel plans this past weekend would leave me a little fatigued. No need to push it - got to rest up for my book signing!)
Whether it's travel, napping, the amount of sleep you get at night, or adhereing to a healthy diet, setting boundaries plays a big role in living well. Here's a snippet from my book, Despite Lupus, entitled, you guessed it - Setting Boundaries!
***
In 2003, when Kraft Food Inc.’s Nabisco group was brainstorming about new forms of dieting and healthy products, they asked online participants what the words “diet food” represented to them and how they made choices when they snacked. Kraft learned that customers didn’t feel they needed to deprive themselves or diet per se – what they really wanted was the ability to control how much they ate. Kraft obliged with 100 Calorie Packs, a line of small, one-person bags of Oreos and Ritz crackers. The results were stunning: In 2005, that product line racked up $100 million in sales. People loved the built-in self-control that accompanied he little snack packs by eliminating the need for willpower.
Example: naps
I quite often find myself “dieting” in other aspects of my life, invoking boundaries for myself so that I don’t have to decide how much activity, sleep, or stress is enough for one day. A few years into my struggle with lupus, it became apparent that about six or seven hours into each day, I completely lost my momentum. I hit a wall, and after that, I was useless. It was a point at which no amount of sugar, caffeine, or adrenaline could help. I was just too exhausted to do anything. If I was still awake, I walked around in a zombie-like state, pushing myself to function on empty. It was as if the last half of the day wasn’t mine anymore; it was lost to
fatigue, claimed without recourse. Not only did I lose those hours when I passed my point of total exhaustion, the hour or two before hitting this proverbial “wall” were futile, too. The last scraps of time before I totally lost it were spent fighting off the exhaustion while trying to accomplish the final tasks.
After much deliberation, I convinced myself that if I napped for a couple of hours in the middle of each day, early enough to fend off the “wall” yet late enough not to interfere with the most basic of daily activities, I wouldn’t be losing, but gaining time. As long as I got in two hours of sleep sometime around 5:00pm, I would be recharged enough to have a full evening ahead, restocked with energy, stamina, and clarity. A two-hour sacrifice seemed like a small price to pay to make each evening bearable again.
For a while, I treated my nap as an occasional occurrence, but I realized I didn’t have the willpower to nap when I needed to. I was too distracted by to-do lists and other things. I needed to set up a constraint for myself so that I couldn’t talk myself out of resting each day. Thus, I made it a mandatory part of each afternoon, whether or not I thought I wanted/needed a nap. (Oh, I kicked, screamed, and threw tantrums about going to bed in the beginning.) But, most days, I slept for a solid two hours or even more. It was obvious my body was exhausted (which is probably why I was so cranky to begin with), but I still struggled to force myself into bed each day.
Today, however, my nap is a welcomed part of my daily ritual. I no longer quarrel with myself as I’m lying in bed, swearing that I don’t really need to rest. Instead, I look forward to the moment when I can shut my eyes and regroup, confident in the positive result.
Friday, May 22, 2009
Rest easy or is it Rest = Easy?
I've come to the conclusion that everything, and I mean everything, is easier if you're well-rested. Fatigue can be such a downer...when I'm tired, I can't think straight, my eyesight gets a little blurry, I turn into a crabmeister (for details, ask my husband), and it seems like any task I attempt to complete becomes a major obstacle. It's as though the task is actually harder to finish when I'm tired.
Check out this great article titled, "Top 10 Health Benefits of a Good Night's Sleep: Why Sleep Matters to You". Among the top 10 things listed, these three are paramount for lupites like us:
Reduces inflammation - a no-brainer
Bolsters your memory - foggy-headed, anyone?
Helps the body make repairs - and don't we need all the fixing we can get?
Check out this great article titled, "Top 10 Health Benefits of a Good Night's Sleep: Why Sleep Matters to You". Among the top 10 things listed, these three are paramount for lupites like us:
Reduces inflammation - a no-brainer
Bolsters your memory - foggy-headed, anyone?
Helps the body make repairs - and don't we need all the fixing we can get?
Wednesday, May 20, 2009
Are those my legs on the cover on my book?
I wish! Add a couple of knobby knees, some bruises from prednisone, baby aspirin, etc., and some shabby-lookin' toes...and sure, that's just what my legs look like. Hmmm...a leg model, I am not.
In fact, I came to the conclusion that I'm never going to be a hand model either. Not that I ever thought I would be. But during the short photo shoot I had to capture my author photo (found on the back cover of my book), it became
apparent that my long, bony, arthritic fingers would need some serious touch-up if they were ever to appear in print. In a couple of the shots taken where my hands were visible, they're almost a distraction. But you know? I love my hands...they're just like my late grandmother's and I think about her every time I look at them. Anyway - I don't think I'm missing anything. Look how much angst hand-modeling caused George Costanza...
While I'm a big proponent of believing that you can do anything you set your mind to...over the years, I've realized that there are a couple of other career choices that I just wasn't meant to pursue. Here's my short list - everything else was and is fair game!
1)Perfume tester - remember, I have no sense of smell. Check out an earlier post for details. Because this schnoz doesn't work, my ability to detect the fruity floral or the musky woodiness of a scent would be far less than acceptable. (In fact - I had to look up those terms since I have no idea what a perfume "smell" even is!) And don't worry, as far as I know, my anosmia (complete lack of the sense of smell) has absolutely nothing to do with lupus!
Here's an interesting tidbit I found when I was looking up the perfume smells online:
People who cannot smell suffer from some form of nasal dysfunction:
Anosmia is the complete loss of the sense of smell. Congential anosmia is rare, but can run in families. Traumatic anosmia can occur due to an injury, and viral anosmia can occur due to an infection.
Hyposmia is the partial loss of the sense of smell.
Parosmia is a distortion of the sense of smell. People with this dysfunction smell one smell and confuse it with another.
Phantosmia is when smells are imagined.
Presbyosmia is the decrease in the sense of smell due to aging.
Whoa. Guess I'm not alone.
2) Professional eating contestant - I just don't have the capability of eating that quickly. In fact, it makes me a little queasy to watch other people eat so fast, too. But congrats to those who can do the whole hot-dog-bun-in-water thing. I applaud you.
Henry the pug was in an eating contest at an annual Pugarama Fest they have in our area one year. (Yes - there's actually such a thing as a Pugarama Fest, and yes, it's fabulous. 100 pugs in one place? Who wouldn't love it?)
The contestants were each lined up in front of a little bowl of water with mini sausages floating about - and who ever managed to finish the sausages first was declared the winner. (Remember, due to the pug's lack of snout, plunging that little face into a bowl of water to fish out even the most succulent of morsels is a daunting task.) Mr. Henry did not win...but his performance was stellar. Mom and Dad were so proud - he'll always be a winner in our book.
3) Long distance truck driver - I just couldn't do it. I don't even like to drive 2 hours - much less across country. Thank goodness there are others who can get the job done, as I realize 99% of the stuff I buy has been lovingly (okay, maybe just carefully) delivered by someone driving the goods a long distance. For that, I thank you.
There you have it. Sara's short list of careers she'll never pursue. That leaves quite a bit of opportunity, don't you think?
In fact, I came to the conclusion that I'm never going to be a hand model either. Not that I ever thought I would be. But during the short photo shoot I had to capture my author photo (found on the back cover of my book), it became
apparent that my long, bony, arthritic fingers would need some serious touch-up if they were ever to appear in print. In a couple of the shots taken where my hands were visible, they're almost a distraction. But you know? I love my hands...they're just like my late grandmother's and I think about her every time I look at them. Anyway - I don't think I'm missing anything. Look how much angst hand-modeling caused George Costanza...While I'm a big proponent of believing that you can do anything you set your mind to...over the years, I've realized that there are a couple of other career choices that I just wasn't meant to pursue. Here's my short list - everything else was and is fair game!
1)Perfume tester - remember, I have no sense of smell. Check out an earlier post for details. Because this schnoz doesn't work, my ability to detect the fruity floral or the musky woodiness of a scent would be far less than acceptable. (In fact - I had to look up those terms since I have no idea what a perfume "smell" even is!) And don't worry, as far as I know, my anosmia (complete lack of the sense of smell) has absolutely nothing to do with lupus!
Here's an interesting tidbit I found when I was looking up the perfume smells online:
People who cannot smell suffer from some form of nasal dysfunction:
Anosmia is the complete loss of the sense of smell. Congential anosmia is rare, but can run in families. Traumatic anosmia can occur due to an injury, and viral anosmia can occur due to an infection.
Hyposmia is the partial loss of the sense of smell.
Parosmia is a distortion of the sense of smell. People with this dysfunction smell one smell and confuse it with another.
Phantosmia is when smells are imagined.
Presbyosmia is the decrease in the sense of smell due to aging.
Whoa. Guess I'm not alone.
2) Professional eating contestant - I just don't have the capability of eating that quickly. In fact, it makes me a little queasy to watch other people eat so fast, too. But congrats to those who can do the whole hot-dog-bun-in-water thing. I applaud you.
Henry the pug was in an eating contest at an annual Pugarama Fest they have in our area one year. (Yes - there's actually such a thing as a Pugarama Fest, and yes, it's fabulous. 100 pugs in one place? Who wouldn't love it?)
The contestants were each lined up in front of a little bowl of water with mini sausages floating about - and who ever managed to finish the sausages first was declared the winner. (Remember, due to the pug's lack of snout, plunging that little face into a bowl of water to fish out even the most succulent of morsels is a daunting task.) Mr. Henry did not win...but his performance was stellar. Mom and Dad were so proud - he'll always be a winner in our book.
3) Long distance truck driver - I just couldn't do it. I don't even like to drive 2 hours - much less across country. Thank goodness there are others who can get the job done, as I realize 99% of the stuff I buy has been lovingly (okay, maybe just carefully) delivered by someone driving the goods a long distance. For that, I thank you.
There you have it. Sara's short list of careers she'll never pursue. That leaves quite a bit of opportunity, don't you think?
Monday, May 18, 2009
Where's DL going to be next?
What a great symposium on Saturday! Thanks to the Lupus Foundation of Greater Washington for putting on a spectacular event. So glad I was able to participate - and thanks to those who attended my interview break-out session. It was fun!
And thanks to those who purchased a copy of my book, Despite Lupus: How to Live Well with a Chronic Illness. Be sure to let me know what you think at sara@despitelupus.com. I welcome your feedback!
Where is Despite Lupus going to be next? Come check us out on Tuesday, May 26th at Food Matters, the great restaurant in Cameron Station in Alexandria, VA. Here's a link to last week's post in which I featured a review of the restaurant. Feel free to stop in for what's sure to be a delicious meal - and a proceeds of your purchase will go the Lupus Foundation GW group. Be sure to pick up a copy of Despite Lupus while you're there. Signed and dedicated, no less. Who could ask for more?
Here's where you can find me on the 26th:
Tuesday May 26
5:00pm – 10:00pm
Food Matters
Cameron Station
4906 Brenman Park Dr
Alexandria, VA 22304
http://www.foodmattersva.com/
Also mark your calendars for Wednesday the 27th - another opportunity to come out for some more Despite Lupus fun, this time at Arfully Chocolate/Kingsbury Confections located in Washington D.C. Here are the details - it's sure to be a sweet time. (You knew I was going to go there...)
Arfully Chocolate/Kingsbury Confections
Cocoa Bar Cafe and Gallery
Wednesday, May 27th
7-8:30pm
1529C 14TH Street NW
Washington, DC 20005
202-387-COCO
Join us for refreshments, music, a little lupus education, and an excerpt from my book. Look forward to seeing you there!
And thanks to those who purchased a copy of my book, Despite Lupus: How to Live Well with a Chronic Illness. Be sure to let me know what you think at sara@despitelupus.com. I welcome your feedback!
Where is Despite Lupus going to be next? Come check us out on Tuesday, May 26th at Food Matters, the great restaurant in Cameron Station in Alexandria, VA. Here's a link to last week's post in which I featured a review of the restaurant. Feel free to stop in for what's sure to be a delicious meal - and a proceeds of your purchase will go the Lupus Foundation GW group. Be sure to pick up a copy of Despite Lupus while you're there. Signed and dedicated, no less. Who could ask for more?
Here's where you can find me on the 26th:
Tuesday May 26
5:00pm – 10:00pm
Food Matters
Cameron Station
4906 Brenman Park Dr
Alexandria, VA 22304
http://www.foodmattersva.com/
Also mark your calendars for Wednesday the 27th - another opportunity to come out for some more Despite Lupus fun, this time at Arfully Chocolate/Kingsbury Confections located in Washington D.C. Here are the details - it's sure to be a sweet time. (You knew I was going to go there...)
Arfully Chocolate/Kingsbury Confections
Cocoa Bar Cafe and Gallery
Wednesday, May 27th
7-8:30pm
1529C 14TH Street NW
Washington, DC 20005
202-387-COCO
Join us for refreshments, music, a little lupus education, and an excerpt from my book. Look forward to seeing you there!
Wednesday, May 13, 2009
Isn't this a wonderful quote?
"Everyone wants to live on top of the mountain, but all the happiness and growth occurs while you're climbing it."
How true this is. After eight and a half years of having lupus, I know just how true this is.
This is a quote from Andy Rooney, most famous as a humorist and political commentator for the news program, 60 Minutes.
Where do I find quotes like this one, which are sprinkled throughout my blog posts and my book, Despite Lupus? This one came to me via the Decorium newsletter, a fabulous gift and home store in Old Town, Alexandria - Alexandria, VA. Make sure you stop in and let Jeff or David know that Sara Gorman sent you. They'll pull out the red carpet for you...
Monday, May 11, 2009
My very first Mother's Day...
And it was pure bliss!! Johnny got up with Deirdre and let me sleep in; I received flowers from both my husband and my daughter (funny...her taste in flowers is very similar to her dad's); Henry, the blind, diabetic pug was particular un-whinny; Darwin, his brother, was a sweetheart and extre
mely cooperative; and, to top it off, Johnny made dinner, Deirdre went down for the night without as much as a whimper, and the boys kissed me goodnight before we went to bed (was that too much information for non-dog lovers?)All around - the best day ever. For awhile, I didn't know if I was going to get the chance to celebrate Mother's Day in this way. During my first few years with lupus, things looked a little grim:
In the beginning, I was told by my doctor that I shouldn't become pregnant. It was dangerous to get pregnant while in a flare - I was just too sick.
Fast forward another couple of years, and I found that I couldn't get pregnant, or at least, not successfully. After getting the go-ahead from my doctor, I tried to get pregnant and did, but then miscarried after 8 weeks. After recuperating for a month or so, I started trying again, but to no avail. Truth is, my body was a wreck - I was in a lupus flare, but tried convincing myself I wasn't. I thought if I just got pregnant, my symptoms would fall by the wayside. I was wrong, and instead, I went into one of the worst flares of my lupus career. After struggling for months, I ended up in the hospital for a week with lupus-induced pancreatitis and severe anemia. The blood transfusion, clear liquid diet and endoscopy were enough to convince me that maybe this wasn't the best time for a baby.
For the following couple of years, I worked on getting my health back in line - treating lupus aggressively with medication that wasn't safe for pregnancy (Cellcept) - and putting my plans for pregnancy on hold. I told myself those plans were just postponed, but as sick as I'd been, I knew there was a possibility that I wouldn't ever be able to get pregnant. But you know what? By that time, I was okay with that notion. I knew the most important thing was to get healthy, stable and strong. Once I did that, I'd be able to consider all of my options and weigh them with a level head.
And my thinking paid off. A couple of years of focusing on my health and wellness allow
ed me to switch medications, attempt to get pregnant, have a successful 38-week pregnancy, and give birth to a beautiful, sweet baby girl named Deirdre. I never thought I'd make it here, but I did!
Three cheers for living well, despite lupus!
And the winner is...
The results are in from the fierce captioning competition we held last week here at Despite Lupus. The task - caption the photo at the right, featuring famished darling Deirdre (on right) with her somewhat bloated cousin, Liam.
Drum roll, please:
Sharing the 3rd place title are:
Sandy Gretter of Greencastle, IN for "Hey, Muffin Man...let's eat!"
Sandy Gretter of Greencastle, IN for "Hey, Muffin Man...let's eat!"
and
John Gorman of Alexandria, VA for "My mom thinks this is a great technique for picking up boys."
Sharing 2nd place, we have:
Katie Duffy of Harleysville, PA for "Tastes like chicken." (Katie gets a special shout-out because she was the first person to submit a caption. It took a little prodding for the rest of the group to turn on their clever-o-meters.)
Sharing 2nd place, we have:
Katie Duffy of Harleysville, PA for "Tastes like chicken." (Katie gets a special shout-out because she was the first person to submit a caption. It took a little prodding for the rest of the group to turn on their clever-o-meters.)
and
Katie Rice of Alexandria, VA for "I wonder how much longer I can pump this thing up before it explodes..."
And 1st place and grand prize goes to:
Katie Rice for her witty, yet scientific submission -
"The Puffer has an unusual ability to inflate itself until almost spherical in shape. Thus, a hungry predator (shown here in a darling cotton frock and cardigan) may suddenly find itself facing what seems to be a much larger fish than anticipated."
What does Katie win? A weekend with the Puffer fish and his lovely lady friend. And maybe a batch of her favorite cookies, too.
Thanks for participating!
Katie Rice of Alexandria, VA for "I wonder how much longer I can pump this thing up before it explodes..."
And 1st place and grand prize goes to:
Katie Rice for her witty, yet scientific submission -
"The Puffer has an unusual ability to inflate itself until almost spherical in shape. Thus, a hungry predator (shown here in a darling cotton frock and cardigan) may suddenly find itself facing what seems to be a much larger fish than anticipated."
What does Katie win? A weekend with the Puffer fish and his lovely lady friend. And maybe a batch of her favorite cookies, too.
Thanks for participating!
Friday, May 8, 2009
Despite Lupus hitting the shelves soon!
That's right - in just a few short weeks, I'll be a published author and my book will be ready for sale.
****
The book, Despite Lupus: Living Well with a Chronic Illness, outlines the steps I've taken to regain the health and wellness I lost due to years of struggling to overcome lupus. Through personal anecdotes and practical exercises, I describe the proven, workable steps it takes to live well with a chronic illness. It's an honest, revealing account of my triumph over lupus, hopefully making Despite Lupus a valuable resource for anyone suffering from a chronic illness, or for those supporting a loved one through the experience.
Here's a little bit more about what the book contains and a review from a contributor from Success magazine. Look for an excerpt to come soon. Gotta get you pumped up for the big unveiling!
Also note that I am now accepting pre-orders for the book. Feel free to shoot me an email at sgorman@cox.net and I'll be happy to go over the particulars with you to make sure you get a book hot off the presses. The book will also be available on my new website, due out soon. I'll be sure to keep you posted on all fronts!
***
Back cover text for the book, Despite Lupus: How to Live Well with a Chronic Illness:
Feel like you’re losing the battle with lupus? Look no further than Despite Lupus, the book that will help you obtain the emotional and physical wellness you deserve. There is no cure for lupus, but there is a way to live well, despite it. The choices involved in living well with a chronic illness aren’t easy, but no one is in a better position to make the right ones than you. In Despite Lupus, you’ll learn how your lifestyle choices have contributed to your illness, why you make the choices you do, and most importantly, how you can make better ones moving forward. A fulfilling life awaits you; this is the path that will get you there.
In Despite Lupus, you’ll discover:
*Tips on tackling the mental and physical limitations brought on by the disease
*Insight into dealing with doctors, co-workers, friends and family members
*Tricks for managing test results, prescriptions, and myriad symptoms
*Exercises to help you eliminate stress, re-evaluate priorities, and refocus productivity
*Guidelines for setting boundaries at home, at work, or when traveling
In Despite Lupus, you’ll find a comprehensive and enlightening take on successfully managing a life with a chronic illness like you’ve never found before. In picking up this book, you’ve taken your first steps toward living well, despite lupus!
Review of the book, Despite Lupus: How to Live Well with a Chronic Illness:
"Suffering through a chronic illness can be one of life's great challenges. Not only do you have to deal with the physical ailment, but you also have to work through the emotional struggle that goes along with it. Then there's the "what if's": "What if we never find a cure?" "What if I never get better?" "What if I'm sick the rest of my life?" And there's also the pressure it can put on relationships. Sara Gorman experienced all of these -- and was able to come through victoriously. Her story is inspiring, challenging, and, most importantly, full of hope for anyone diagnosed with Lupus or any chronic illness."
Steve Kroening
Freelance writer for Success magazine
Publisher of wisdomsedge.com
Wednesday, May 6, 2009
It's confirmed: Deirdre really IS perfect!
We recently had a follow-up appointment with Deirdre's pediatric cardiologist, and all went well.
When Deerdeepants was born, the doctors discovered that she had a slight heart murmur, the kind that is commonly referred to as a Ventricular Septal Defect (or "VSD".) The septum is a wall that separates the heart's left and right sides, and a VSD is a defect that is between the heart's two lower chambers (the ventricles).
If the opening between the ventricles is small (like Deirdre's), it doesn't strain the heart. In this case, the only abnormal finding is a loud murmur. However, when it's a large opening between the ventricles, a large amount of oxygen-rich (red) blood from the heart's left side is forced through the defect into the right side. Then it's pumped back to the lungs, even though it's already been refreshed with oxygen. This is inefficient, because already-oxygenated blood displaces blood that needs oxygen. This means the heart, which must pump more blood, may enlarge from the added work. High blood pressure may occur in the lungs' blood vessels because more blood is there, and over time, this increased pulmonary hypertension may permanently damage the blood vessel walls.
The cardiologist who saw her in the hospital assured us of several things:
1) The small opening Deirdre had was a very common defect, one that typically closes up within the first two years of life.
2) In the case that the opening did not close up, it would never develop into anything that would keep sweet little Deirdre from doing anything. It wouldn't curtail her activity level, her breathing capability, or the oxygen level in her blood. Sure, she might have to see the cardiologist every once in awhile, but that would have been it.
3) The defect was not caused by me having lupus; it wasn't caused by any of the medications I took during my pregnancy for lupus; it didn't have anything to do with the congenital heart block checks we did every two weeks throughout my pregnancy (because of the SSA antibody I carry due to lupus); nor did it have anything to do with the fact that I have mitral valve prolapse (or "MVP"), also known as a "leaky heart".
MVP is a very common heart defect which occurs when the valve between your heart's left upper chamber (left atrium) and the left lower chamber (left ventricle) doesn't close properly. When the left ventricle contracts, the valve's leaflets bulge (prolapse) upward or back into the atrium. Mitral valve prolapse sometimes leads to blood leaking backward into the left atrium, a condition called mitral valve regurgitation.
Bottom line - that nasty disease called lupus and Deirdre's mother had nothing to do with her VSD. Yippee!
And the best news is that when we went in for her 6-month follow up appointment (which actually took place closer to her 7-month anniversary), the doctor confirmed that the opening had closed!!! Double Yippee!! Poor little Deirdre had to withstand an EKG (her little chest was covered with about 10 electrodes...there was hardly enough room for the stickies!) and an ultrasound (the little paddle they used was about the size of my thumb), but she didn't seem to mind the tests. In fact, I think she kind of liked the attention.
So - Deirdre is officially done with the cardiologist for the foreseeable future. We never have to go back because, as I said, it's been declared that Miss Deirdre Colina Gorman is 100% perfect, from top to bottom, inside and out. (But her dad and I already knew that, of course.)
Want to see a few pictures of our perfect little angel? Eat your heart out!
Monday, May 4, 2009
Food Matters on May 26th! What an event!
The Lupus Foundation of Greater Washington (http://www.lupusgw.org/) is partnering with Food Matters to sponsor a Lupus Night when a percentage of sales will be donated to the Lupus Foundation No RSVP necessary; just show up!
SAVE THE DATE!
Tuesday, May 26
5:00pm – 10:00pm
Food Matters
Cameron Station
4906 Brenman Park Dr
Alexandria, VA 22304
http://www.foodmattersva.com/
Want to know a little bit more about the restaurant, Food Matters? Check out this rave review by Carla Besosa, restaurant reviewer for the Compass:
***
Food Matters…of course it does! That is why our aptly titled neighborhood restaurant/bar is such a wonderful addition to Cameron Station. Demonstrating a serious commitment to fresh ingredients and creative cuisine, Executive Chef Tom Przystawik presents us with a pleasing variety of selections. Changes to the menu and the wine/beer list are made monthly, so there is a constant influx of new choices. Couple that with the friendly atmosphere and the convenience of walking to and fro (or taking advantage of the new Brenman Park Drive shuttle stop during operating hours), and Food Matters continues to add value to an already exceptional community.
Get to know the staff – what a great group of folks! They not only provide efficient service, they are a heck of a lot of fun! When Giovanni brings you to your table, Phil pours your wine, John brings your pasta, Alicia, Mauricio and Acacia take your order, Bill assists with the deli offerings, Mary makes things run smoothly, or General Manager Christy Przystawik checks on the patrons, all is done with a smile and a level of personal interaction that makes them not just wait staff but neighborhood friends.
Some lunch favorites include the now-famous smoked paprika deviled eggs (see the June 2008 “100 Best Bargain Restaurants” issue of Washingtonian magazine), the Rosada Angus beef burger, the goat cheese and walnut tart and homemade soups. For dinner, the Amish chicken is always a favorite, as are their seafood specialties, steak and pastas. Searching for the lighter side? Build your own salad or choose from a list of fourteen mix-and-match side dishes. Brunch offerings are also impressive. Build your own omelet, indulge in the smoked salmon frittata or treat yourself to the decadent challah French toast with cranberry rum topping. Try the Handwich, a homemade ice cream sandwich to satisfy any sweet tooth.
Check out www.foodmattersva.com to view the menu of the month and see what special events are in the making. One can also register through the website to receive Food Matters updates as new events surface. The private dining room, known as “The Table,” is the venue for various chef’s dinners and wine tastings, offering the finest in food and drink. It’s also quite fun to reserve The Table and create your own private event. The Table has seen many a birthday party, anniversary celebration, dinner-and-a-movie night, business luncheon/dinner, fundraiser and committee gathering. Let your imagination run wild, and Christy will assist you in customizing a menu that perfectly complements your occasion.
Speaking of themes, enjoy the All-You-Can-Eat Pasta Night every Wednesday (three great selections, different every week, accompanied by a salad), the daily Happy Hour specials (5:00-6:30pm), the Saturday late-night Happy Hour (9-11pm), and a plethora of celebrations throughout the year to commemorate such happenings as Mardi Gras, Peruvian Day, New Year’s Eve, New Year’s Day (Pajama Brunch!), the Super Bowl, Inauguration…just to name a few.
With windows surrounding you on two sides, you overlook the lake in Ben Brenman Park. When the weather is pleasant, relax on the patio as you watch the sun set to the west. This is the “Cheers” of Cameron Station; if everyone doesn’t know your name yet, they surely will once you visit a few times. Bring a group of friends, or the comfortable atmosphere is very conducive to just wandering in solo. See you there!
Hours of Operation:
Tuesday–Thursday, 5-10pm
Friday, 5-11pm
Saturday, 11am-11pm
Sunday, 9am-10pm
Closed Monday
Price Range:
(Approximate and subject to
change as monthly selections change)
Brunch: Appetizers: $3.95-$8.95
Entrees: $6.95-$14.95
Lunch: Appetizers: $4.95-$8.95
Entrees: $7.95-$16.95
Dinner: Appetizers: $4.95-$12.95
Entrees: $7.95-$25.95
Sides: $4.95
Desserts: $4.95-$6.95
Smoking: No
Handicapped Accessible: Yes,
Parking: Street/public parking on
Brenman Park Drive and Somervelle Street
Reservations: Recommended for large parties
See you on the 26th!
SAVE THE DATE!
Tuesday, May 26
5:00pm – 10:00pm
Food Matters
Cameron Station
4906 Brenman Park Dr
Alexandria, VA 22304
http://www.foodmattersva.com/
Want to know a little bit more about the restaurant, Food Matters? Check out this rave review by Carla Besosa, restaurant reviewer for the Compass:
***
Food Matters…of course it does! That is why our aptly titled neighborhood restaurant/bar is such a wonderful addition to Cameron Station. Demonstrating a serious commitment to fresh ingredients and creative cuisine, Executive Chef Tom Przystawik presents us with a pleasing variety of selections. Changes to the menu and the wine/beer list are made monthly, so there is a constant influx of new choices. Couple that with the friendly atmosphere and the convenience of walking to and fro (or taking advantage of the new Brenman Park Drive shuttle stop during operating hours), and Food Matters continues to add value to an already exceptional community.
Get to know the staff – what a great group of folks! They not only provide efficient service, they are a heck of a lot of fun! When Giovanni brings you to your table, Phil pours your wine, John brings your pasta, Alicia, Mauricio and Acacia take your order, Bill assists with the deli offerings, Mary makes things run smoothly, or General Manager Christy Przystawik checks on the patrons, all is done with a smile and a level of personal interaction that makes them not just wait staff but neighborhood friends.
Some lunch favorites include the now-famous smoked paprika deviled eggs (see the June 2008 “100 Best Bargain Restaurants” issue of Washingtonian magazine), the Rosada Angus beef burger, the goat cheese and walnut tart and homemade soups. For dinner, the Amish chicken is always a favorite, as are their seafood specialties, steak and pastas. Searching for the lighter side? Build your own salad or choose from a list of fourteen mix-and-match side dishes. Brunch offerings are also impressive. Build your own omelet, indulge in the smoked salmon frittata or treat yourself to the decadent challah French toast with cranberry rum topping. Try the Handwich, a homemade ice cream sandwich to satisfy any sweet tooth.
Check out www.foodmattersva.com to view the menu of the month and see what special events are in the making. One can also register through the website to receive Food Matters updates as new events surface. The private dining room, known as “The Table,” is the venue for various chef’s dinners and wine tastings, offering the finest in food and drink. It’s also quite fun to reserve The Table and create your own private event. The Table has seen many a birthday party, anniversary celebration, dinner-and-a-movie night, business luncheon/dinner, fundraiser and committee gathering. Let your imagination run wild, and Christy will assist you in customizing a menu that perfectly complements your occasion.
Speaking of themes, enjoy the All-You-Can-Eat Pasta Night every Wednesday (three great selections, different every week, accompanied by a salad), the daily Happy Hour specials (5:00-6:30pm), the Saturday late-night Happy Hour (9-11pm), and a plethora of celebrations throughout the year to commemorate such happenings as Mardi Gras, Peruvian Day, New Year’s Eve, New Year’s Day (Pajama Brunch!), the Super Bowl, Inauguration…just to name a few.
With windows surrounding you on two sides, you overlook the lake in Ben Brenman Park. When the weather is pleasant, relax on the patio as you watch the sun set to the west. This is the “Cheers” of Cameron Station; if everyone doesn’t know your name yet, they surely will once you visit a few times. Bring a group of friends, or the comfortable atmosphere is very conducive to just wandering in solo. See you there!
Hours of Operation:
Tuesday–Thursday, 5-10pm
Friday, 5-11pm
Saturday, 11am-11pm
Sunday, 9am-10pm
Closed Monday
Price Range:
(Approximate and subject to
change as monthly selections change)
Brunch: Appetizers: $3.95-$8.95
Entrees: $6.95-$14.95
Lunch: Appetizers: $4.95-$8.95
Entrees: $7.95-$16.95
Dinner: Appetizers: $4.95-$12.95
Entrees: $7.95-$25.95
Sides: $4.95
Desserts: $4.95-$6.95
Smoking: No
Handicapped Accessible: Yes,
Parking: Street/public parking on
Brenman Park Drive and Somervelle Street
Reservations: Recommended for large parties
See you on the 26th!
Friday, May 1, 2009
Staying SunWise - tips from a guest poster
Check out this guest post from Katie Wilson, health-advisor extraordinaire. She has some great tips on Staying Protected this Summer:
***
It may not officially be the start of summer, but that doesn’t mean that Mr. Sun is taking any time off. Whether you’re planning a getaway to the beach or just working outside in your yard this weekend, remember to put on the sun block and do your skin a favor.
There are a lot of myths out there about sunscreen, like whether or not you need to put it on during cloudy weather. Here are some interesting tidbits about your skin and the best ways to protect it.
Sunscreens are not all the same.
In fact, if you neglect to read a label, you could very well apply a lotion that won’t actually protect your skin from the sun. The thing to remember here is to take the time to read about what you are going to rub all over your body. The skin is your body’s largest organ, and in order to keep yours in great shape you want to pay attention to what you use on it.
Start with a quality product.
Once again, your skin is an organ, and it’s just as important as your heart or your liver. You could spend hours in a gym tending to sculpting your muscles, but just one hour in the sun unprotected could do serious damage to your body’s natural covering. So put on some sunscreen, but don’t mistake a bargain brand for something you want to use all over your most visible body part.
Head down to your local natural grocer or health store and have a look at the sunscreen they offer. While you may spend a little extra for quality, you can be assured that your body won’t be absorbing nasty chemicals that cheap brands might use. Your skin is incredibly sensitive, and anything you put on it will be absorbed into your body. Ask a professional to help you and read the ingredient list.
If you don’t know what one ingredient is, look it up. Remember it’s your body and you only get one so take some ownership and do the right thing.
SP-what?
Every brand of sunscreen is required to label itself with an SPF, or Sun Protection Factor. This is, more or less, the ‘strength’ of your lotion. Know that there is a very real difference between a product that has say a 15 SPF and another that has a 30.
This number refers to how much of those damaging UV rays the lotion will block out. A SPF 15 blocks out approximately 93% of harmful UV rays, while a SPF 30 blocks out 97%.
But even when a lotion says ‘all day protection’ the chemicals will start to break down the minute you plop them onto your skin.
You should reapply regularly, about every few hours, and remember that being in the shade isn’t protection either. UV rays bounce off anything and everything. The only protection that is rated to 100% is a thick t-shirt or other actual barrier from the sun.
This post was contributed by Katie Wilson, who writes about the top nursing programs. She welcomes your feedback at KatieWilson06 at gmail.com
***
It may not officially be the start of summer, but that doesn’t mean that Mr. Sun is taking any time off. Whether you’re planning a getaway to the beach or just working outside in your yard this weekend, remember to put on the sun block and do your skin a favor.
There are a lot of myths out there about sunscreen, like whether or not you need to put it on during cloudy weather. Here are some interesting tidbits about your skin and the best ways to protect it.
Sunscreens are not all the same.
In fact, if you neglect to read a label, you could very well apply a lotion that won’t actually protect your skin from the sun. The thing to remember here is to take the time to read about what you are going to rub all over your body. The skin is your body’s largest organ, and in order to keep yours in great shape you want to pay attention to what you use on it.
Start with a quality product.
Once again, your skin is an organ, and it’s just as important as your heart or your liver. You could spend hours in a gym tending to sculpting your muscles, but just one hour in the sun unprotected could do serious damage to your body’s natural covering. So put on some sunscreen, but don’t mistake a bargain brand for something you want to use all over your most visible body part.
Head down to your local natural grocer or health store and have a look at the sunscreen they offer. While you may spend a little extra for quality, you can be assured that your body won’t be absorbing nasty chemicals that cheap brands might use. Your skin is incredibly sensitive, and anything you put on it will be absorbed into your body. Ask a professional to help you and read the ingredient list.
If you don’t know what one ingredient is, look it up. Remember it’s your body and you only get one so take some ownership and do the right thing.
SP-what?
Every brand of sunscreen is required to label itself with an SPF, or Sun Protection Factor. This is, more or less, the ‘strength’ of your lotion. Know that there is a very real difference between a product that has say a 15 SPF and another that has a 30.
This number refers to how much of those damaging UV rays the lotion will block out. A SPF 15 blocks out approximately 93% of harmful UV rays, while a SPF 30 blocks out 97%.
But even when a lotion says ‘all day protection’ the chemicals will start to break down the minute you plop them onto your skin.
You should reapply regularly, about every few hours, and remember that being in the shade isn’t protection either. UV rays bounce off anything and everything. The only protection that is rated to 100% is a thick t-shirt or other actual barrier from the sun.
This post was contributed by Katie Wilson, who writes about the top nursing programs. She welcomes your feedback at KatieWilson06 at gmail.com
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