My View
Spring 2012 Responses
When you have lived with lupus for many years it’s not unusual to look back and think about how things might have been different, if you had known more about lupus and its health effects. In this column we asked long-timers to write in with what they wish they had known when their lupus journey first began. We hope their words will offer insight to those who have recently been diagnosed.
I wish someone had told me that even though lupus will always be a part of my life I should never let it dictate who I am and determine what I can and can not do. Learn to LIVE... with lupus!—Mary Dancel, Parlin, NJ
When I was diagnosed with lupus 12 years ago I wish someone would have told me that lupus can also cause dental problems. I have been getting a lot of dental work done due to bone loss and gum problems. I’m 25 years old and already lost one tooth due to it, and money-wise it’s a hassle, but little by little I’m getting my smile back. Everyone with lupus should always visit a dentist.—Carmina Figueroa, North Plainfield, NJ<
When I was diagnosed with lupus 20 years ago, I wished someone had told me to keep a separate medical diary. Doctors sometimes ask me if I had ever taken a certain drug, and if so when, for how long and the reason for stopping. I can hardly remember what I had for lunch yesterday much less a medication I may have taken 10-20 years ago.—Sharmane Hines, Margate, FL
When I was diagnosed with lupus three years ago I wish someone would have told me no one had the answers. I spent a lot of time and energy thinking I could find the magic answer/medicine/doctor that could make me “better.”— Donielle Scherff, Leesburg, VA
When I was first diagnosed 14 yrs ago I wish someone would have told me that I would have a variety of changing, rotating, weird, and odd symptoms.— Donna Hale, Waterford, CA
When I was diagnosed with lupus 11 yrs ago, I wished someone had told me how hard it was to recover. I had to learn to walk again, I had to learn how to grab a pencil, and I was told it would be almost impossible to become a mother. I never gave up and gave my life to the Lord, and now I have three beautiful and healthy children and am very thankful to God everyday for them and for the strength he has given me to recover and be stable for all these years.—Pierina Castaneda, Los Angeles, CA
When I was diagnosed with lupus 10 years ago, I wish someone had told me that, although it may be rough and alter your lifestyle, it will get better. There will even be days when you forget that you are different from others, but you are stronger underneath because of lupus.—Karen Sechowski, South Bend, IN
When I was diagnosed withlupus, I wish someone had told me that a diagnosis doesn't mean that they stop looking for something else to see what else you have. You still climb up a hill, not down.—Kristin A. Davis, Huntsville,AL
When I was diagnosed with lupus five years ago, I wish someone had told me that a diagnoses is not the comfort blanket it may appear, and you need to have a coping strategy for when you develop new symptoms.—Amanda Carson, New York, NY
When I was diagnosed with lupus 11 years ago, I wish someone had told me that life was not over. There are going to be times when it gets tough and I should never give up. Each time I overcome a flare-up will be a battle won to live as I did before the diagnoses.—Terrianni Thongsavath, Anaheim, CA
My View: Fall 2011 Responses
My View: Summer 2011 Responses My View: Fall 2010 Responses