Saturday, May 12, 2007

Reviews

"An interesting and useful guide that instructs lupus patients in the art of coping and helping themselves with a serious disorder."
Daniel J. Wallace, MD
Rheumatologist
Author, “The Lupus Book: A Guide for Patients and Their Families”


“Lupus is a life-altering disease. What Sara [Gorman] learned is that she could let lupus alter her life or she could take charge and alter her own life to achieve better control of her lupus. During the struggle that she shares with her readers, she acquired the wisdom to accept that she would live the rest of her life with lupus. She also developed the courage to rebuild her life with lupus by taking charge of what she could control, and she shares that story. Those elements of wisdom, acceptance and taking control underlie many if not most of the stories that I hear of successfully living with lupus, and that is why I hope many will read Sara’s story and learn from its message of hope.“
Penny Fletcher, President and CEO
Lupus Foundation of America
Greater Washington Chapter


“Sara [Gorman] has written a gem of a book for lupus patients struggling with a new, frightening and unpredictable illness. Her advice is also applicable to all of us: lead a healthier, happier life. Discover the inner self and what is really important to you. Change is the cornerstone of life. Sometimes when we are feeling awful, we fear that "I will feel like this forever". That feeling is understandable but completely false. Things always change. Knowing that we will not feel the same the next day or the next week is comforting. Our ability to change and put our happiness and the happiness of our loved ones as the core of our existence makes us happier and healthier people with our chronic disease, whatever that disease may be. Sara's book helps us learn these and other truths to help us live with lupus and lead happier lives.”
Neil I. Stahl, MD
Rheumatologist


“An invaluable resource for those dealing, not just with lupus, but any chronic illness. Truly moving.”
Sam Rogers
Alliance for Lupus Research


"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




Lupus Links

Books

Programmer - note that my Amazon.com associate links are listed directly below the book’s title and author.)

It’s Not About the Bike: My Journey Back to Life by Lance Armstrong


Fibromyalgia & Chronic Fatigue Syndrome: Seven Proven Steps to
Less Pain And More Energy by Fred Friedberg


Celebrate Life: New Attitudes for Living with Chronic Illness by Kathleen Lewis


Too Soon Old, Too Late Smart: Thirty True Things You Need to
Know Now by Dr. Gordon Livingston


A Short Guide to a Happy Life by Anna Quindlen


The Lupus Book, 4th Edition by Dr. Daniel J. Wallace


Rebirth: A Leukemia Survivor's Journal of Healing during
Chemotherapy, Bone Marrow Transplant, and Recovery by Deborah Ludwig


Magazines

Arthritis Today (www.arthritistoday.org)
Lupus Now (www.lupusnow.com)

Health sites

Mayo Clinic (www.mayoclinic.com)
WebMD.com (www.webmd.com)
Lupus Foundation of America (www.lupus.org)
Lupus Foundation of America, Greater Washington chapter (www.lupusgw.org)
MedicineNet.com (www.medicinenet.com)
My Life Works Today! (http://www.mylifeworkstoday.com)
Alliance for Lupus Research (www.lupusresearch.org)
Arthritis Foundation (http://www.arthritis.org)
Partnership to Fight Chronic Disease (www.fightchronicdisease.org)

Lupus Blogs

A Chronic Dose (http://achronicdose.com/)
Sweet and Fit (http://sweetandfit.wordpress.com/)
On the Road to a Cure (http://lfa-inc.blogspot.com/)
Together, We will Find a Cure (http://togetherwewillfindacure.blogspot.com/)



Helpful Hints

Need ideas for simplifying your life? Consider the following:

ENLISTING HELP
  • Hire a cleaning service
  • Order your groceries online and have them delivered
  • Outsource yard work
  • Accept meals from organizations catering to the sick or homebound
  • Mail-order your prescriptions
  • Order gifts online and have them shipped to the recipient directly
  • Have gifts professionally gift-wrapped – save your swollen fingers the trouble
  • Hire a caterer when you host a party
  • Bring a side dish from your favorite restaurant to your next potluck dinner, or buy pre-made shes from the grocery store
  • Pull into the full-serve gas pump every once in awhile to give yourself a break
  • Say “Yes” when the attendant at the grocery store asks, “Need help outside?”
  • Ask the store clerk to help you with hard-to-unwrap items (e.g. CD’s and DVD’s, anything with a twist-off cap) immediately after you’ve purchased them, if no one is at home to help you
  • Hire someone to walk/groom/care for your pets
  • Hire a handy man to help with everything and anything around the house
  • Ask your grocery store deli or bakery to slice, cut, or pre-package items so that you don’t have to
  • Use a dry cleaning service that picks up and delivers
  • Use the skycap service at the airport or a bellman at a hotel to handle your luggage
  • Let someone help you when assistance is offered – each and every time

HELPING YOURSELF

  • Schedule doctors appointments or errands during your most mobile, agile time of the day or week
  • Switch your wardrobe to pullover tops and pull up pants or skirts. Forget the buttons!
  • Wear clasp-less jewelry – slide-on bracelets and necklaces can be just as cute
  • Invest in soft, wireless bandeau bras if the hard wires of traditional bras are painful to you
    and don’t worry that they might not be as flattering. When you have a grimace on your face because you’re in pain, you’re probably even less attractive. (You won’t have to remove them for X-Rays, either!)
  • Use weekly pillboxes to organize your medicines
  • Use lightweight plastic cups instead of heavy glassware. Your joints will thank you
  • Alter your hairstyle so that you have an easier ‘do with which to work. Don’t you remember Julia Roberts in Steel Magnolias?
  • Buy a wig if you’re losing your hair or invest in a couple of cute hats. You’ll save yourself the aggravation of trying to make those thin little wisps of yours behave
  • Utilize a cane, walker, or wheelchair when necessary. Don’t be embarrassed – hobbling
    around as if you’re about to collapse is what calls attention to yourself. Breezing along with the help of a walking device does the opposite!
  • Buy easy-open toiletries, groceries, etc.
  • Invest in a letter opener for mail, etc.
  • Replace your kitchen utensils with the easy-grip brands – they really make a difference
  • Make life with pets as easy as you can – if picking them up is too strenuous, purchase an ottoman so they can hop up and down on your lap without your help
  • Wear silky pajamas to bed, making it easier to turn over without disturbing your joints
  • Swap out hard-to-turn faucets or door handles for easier turning levers
  • Buy or request large print books from the store or library, if your vision is failing you
  • Buy single-use packets of dishwashing soap and laundry detergent so that you don’t have to measure out or pour anything
  • Carry non-zip bags and purses, and empty them of all of the heavy items you shouldn’t be lugging around
  • Ditch the over the shoulder duffle bags and always opt for wheeled luggage
  • Pay your bills online

Chronic Control Chart

Need an organized way to keep track of your myriad symptoms, prescriptions, and more? Try creating your own version of my Chronic Control Chart (C3), seen here:




SUGGESTED CATEGORIES/LINE ITEMS for your own C3

SYMPTOMS - Joint Pain, Joint Swelling, Sore Throat, Swollen Glands, Neck Pain, Heartburn,
Chest Pain, Fever, Hives, Stomach Cramps, Digestive Problems, Chills, Fatigue, Muscle Soreness,Hair Loss, Vomiting, Headache, Tooth Sensitivity, Ear Ache, Numbness, Skin Discoloration,Blurry Eyesight, Lightheadedness, Hot Spots, Mobility, Angioedema, Skin Breakout.

LIFESTYLE – Travel, Hours Worked, Hours Slept, Nap Length/Time of Day, Exercise, Overall
Morning/Day/Night, Food, Alcohol.

MEDICATIONS - List all prescriptions you currently or intermittently take; also list OTC cold
medications, pain relievers and vitamins that you take in addition to your prescriptions.

TEST RESULTS - CT Scan, X-Rays, Blood Work, Urinalysis, Bone Density Test, Pulmonary
Function Test, Blood Pressure, Platelet Count, Ultrasound, Weight.

DOCTORS – List all doctors you regularly visit. I found that although my eye doctors, dentists,
gynecologists, and podiatrists weren’t originally treating me for lupus, they eventually contributedto my treatment. Therefore, I included them on my chart.

Great Doctors

Rheumatology

Virginia
Dr. Neil Stahl
Arthritis and Rheumatic Disease Associates
Burke and Woodbridge
703-425-4435

Dr. Phillip Kempf
Arthritis Clinic of Northern Virginia
Arlington
703 525-3069

Dr. Claudia Saba
Northern Virginia Center for Arthritis
Fairfax
703 573-0130

Dr. Harvey A. Schwartz
Alexandria
703 751-8804

Dr. Kathleen N. Price
Medical Surgical Group - Northern Virginia
Falls Church
703-533-2000

Washington D.C.
Dr. Susan Lacks
Northwest D.C.
(202) 293-8855

Dr Rodolfo Curiel
GW University/MFA
Northwest D.C.
(202) 741-3333

Maryland
Dr. John Meyerhoff
Sinai Hospital, Baltimore
(410) 601-6840

Missouri
Dr. Prahba Ranganathan
Washington University Medical Center
St. Louis and Creve Coeur
314-286-2635

Pulmonology

Virginia
Dr. George Bazaco
Pulmonary and Critical Care Specialty
Fairfax and Manassas
703-391-8804

Dermatology

Iowa
Dr. Charles Weber
Tri-State Surgery CenterDubuque
(563) 584-4425

Perinatology/High-Risk Obstetrician

Virginia
Northern Virginia Perinatal Associates
Dr. Al Khoury, Dr. Barbara Nies, Dr. Huda Al-Kouatly, Dr. George Bronsky
Fairfax
703-698-5350

Internal Medicine

Idaho
Dr. Jared Morton
Idaho Falls
(208) 535-4300

General Medicine

Virginia
Dr. Stephen Rex
Mount Vernon Primary Care
(703) 799-4000

Washington
Dr Amy Numrych
Bellevue Family Medicine
Bellevue(425) 454-5311


THE FIGHT OF MY LIFE

At the time I was diagnosed, I had been married less than six weeks, was at a high point in my career in television production, and had no interest in letting a chronic illness upset my plans for the future. Therefore, I refused to let it do so. Yes, I was stuck with a confusing, chronic illness that was capable of inflicting debilitating pain and making me suffer miserably, but I decided to fight my way to wellness. I down-right revolted. I refused to give in to the disease, kicking and screaming every time lupus tried to assert herself. I thought my best defense was to deny the fact that I even had it, living with complete disregard to its limitations.

When I felt rundown or exhausted, I pushed on. When my joints were achy and swollen, I convinced myself they weren’t and kept on moving. There were days when I was stuck in bed, severely sick and immobile, but most days, I just weathered the symptoms the best I could. I thought a positive attitude and an indomitable spirit would be the keys to coping with the physical and mental pain. If I didn’t show any signs of weakness, lupus would take the hint and move on to someone more susceptible and defenseless. Those characteristics didn’t fit my profile, and I was going do everything in my power to prevent lupus from changing me.

Unfortunately, lupus didn’t care how hard I tried to fend off her symptoms. The more I pushed her away, the more she raged on. My symptoms worsened, and my health declined severely. I continued to believe that my determined efforts could be productive, if I just pushed a little harder. But my body didn’t have anything more to give. The countless medicines and pain killers, a blood transfusion, lung taps, multiple visits to the emergency room and a week in the hospital weren’t enough to keep my body afloat anymore. Unlike any other adversary I’d ever been up against, lupus is a potentially fatal, chronic illness, and I was losing the battle.

For four years, I desperately struggled to keep hold of the life I’d known
(demanding, yet fulfilling career, busy social life, packed vacation schedule, invincible attitude), but my body couldn’t take it anymore. I was fighting life, instead of living it, and had resigned myself to the fact that I would be lucky if my body held out to the age of thirty. I told myself I wasn’t giving up; my body was just giving out, and there wasn’t anything I could do about it. I began thinking about the things I should do before I died: work less; live more; appreciate my family; enjoy time with friends; be more creative; attempt to fulfill my personal, life-long goals in the limited time I had. The all-encompassing objective was to realign my priorities and get the most out of life, while I still could.

But as I crafted my plan for a premature death, it seemed I was making an even more compelling case for life. Why shouldn’t I get my priorities in line right now, not for death’s sake, but for the benefit of my future? Did I really have to work as much as I did, or was I letting pride and stubbornness rule my decision to do so? As committed as I was to acting as if lupus had left me unaffected, who was I keeping up appearances for, and was I profiting from the charade? I wanted to travel the world, have children, and enjoy my hobbies, but if I didn’t start taking care of myself, I’d see none of those things come to pass.

It took me far too long to connect my driven mentality, an overactive lifestyle and my continued decline in health. While I wasn’t preemptive in my efforts, you can be. That’s why this book makes the connection evident within the first few chapters. You’ll see how your past lifestyle choices have contributed to your illness and why the choices you make in the future can propel you into a permanent state of wellbeing. You’ll learn why you make the decisions you do and how to make better ones moving forward.

Once I realized the error of my ways, I started focusing on making better decisions for myself, ones that would prevent my lupus from flaring up. I knew if I was healthier, I’d be more mobile and have more energy. I would enjoy life like I used to. I could spend more quality time with friends, enjoy evenings out with my husband, and be the spunky, happy wife, sister, friend and daughter I once was.

Taking ownership of my life no longer seemed futile. It seemed like I could actually improve my life with lupus, if I just chose to do so. I could actually start living well, despite lupus.

During the next two years, I downshifted almost every aspect of my life. I quit my job and made it my number one priority to get myself back in good health. I cancelled vacations, passed on social engagements, and incorporated a 2-hour nap into my daily routine. Some days, the decision to live well seemed just as difficult as the suffering I had already experienced. But in most cases, it proved to be the greatest decision I had ever made.

I learned all I could about the disease. I attempted to understand its patterns and adjust to its needs, making changes and sacrifices along the way. My life was different, for sure. But no doubt, it was better. After all, I was living well. Before, I was merely surviving. Ever so slowly, the pain, swelling, and fatigue began to subside. My failing organs and deteriorating spirit, both of which I thought were permanent fixtures in my life, started to heal. Hopelessness, despair and anxiety were replaced with confidence, happiness, and serenity. I had been trying so hard to extricate the disease from my life, I had failed to consider the positive effect of incorporating (and accepting) it as part my life’s master plan. I began to see just how good my life with lupus could be. And so can you.



Common Medications

Actonel
Bactrim
Bextra
Celebrex
Cellcept*
Cipro
Clindamycin
Clobetasol Gel
Coumadin
Cytoxin
Darvocet
Differin
Endocet
Folic Acid
Fosamax
Hydrocortisone
Keflex
Levaquin
Lovenox
Methotrexate
Mobic
Naproxen
Pepcid
Plaquenil*
Prednisone*
Prevacid
Prilosec
Promethazine
Pulmicort Turbuhaler
Serevent Inhaler
Vioxx
Zantac
Zyrtec


See blog archive


Buy the Book

Despite Lupus: How to Live Well with a Chronic Illness
by Sara Gorman

Price: $19.95, plus tax and shipping


Stop fighting life. Start living it. Despite Lupus

Despite Lupus: Living Well with a Chronic Illness outlines the steps author Sara Gorman has taken to regain the health and wellness she lost due to years of struggling to overcome lupus. Through personal anecdotes and practical exercises, Sara describes the proven, workable steps it takes to live well with a chronic illness. It's an honest, revealing account of her triumph over lupus, making Despite Lupus a valuable resource for anyone suffering from a chronic illness, or for those supporting a loved one through the experience.



About the Book

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!





About Sara

Sara Gorman was diagnosed in January of 2001 with systemic lupus. She was 26 years old, had been married less than six weeks, and was at a high point in her career in television production. Determined not to let a chronic illness dictate her plans for the future, she refused to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she realized she was fighting life, instead of living it. Thus, she made it her top priority to start living well, despite lupus. The steps she took to regain the health and wellness she’d lost are outlined in her book, Despite Lupus: How to Live Well with a Chronic Illness. Quitting her job, postponing plans for pregnancy, and cutting off her hair (or what she had left) are just a few of the monumental, courageous steps she took to reach her goal of living well, despite lupus.

A native of Indiana and graduate of the University of Notre Dame, Sara resides in Alexandria, Virginia with her husband Johnny, daughter Deirdre, and two pug dogs, Henry and Darwin. Feel free to contact her at sara@despitelupus.com.