Our Voice May 2014 - Annual Lupus Awareness Edition | Page 27

My Struggle With Lupus

Our Voice / May 2014 27

(when it is easy to forget to take care), a person with lupus needs to avoid situations that can bring on a flare. These include getting too tired, intense stress, poor diet or other factors noticed by patient or doctor. Lupus is a serious condition, but diagnosis and treatment are improving. Today it can be treated and controlled. More and more people with lupus are finding that they can be active and productive.One thing that makes a huge difference in living with lupus is the person's role in controlling the disease. We can deal better with the challenge of living with this or any chronic condition by learning all we can about the condition and by being aware of how our own body reacts.Often, a person's flares follow a clear pattern, with the same combination of symptoms every time. An informed patient can watch for warning signs and alert the doctor early on. While false alarms happen, catching a flare in its early stages can make treatment easier and more effective. With this as a basis, a good working relationship with the doctor is crucial for the success of treatment. The strong support of family and friends can be equally important.How I discovered I had Lupus. I had the feeling there was something terribly wrong with me as I was finding it difficult to do the simplest of tasks such as picking up the romote control for the television. After several months I figured it was time for me to see a doctor, (don't be like me, see a doctor immediately if you feel you have anything wrong) when I saw my doctor he ran a simple blood test and Lupus came up positive.I had no idea what Lupus was, so I looked it up on the Internet to see what I was in store for. I am a very strong person physically, I used to swim 100 laps everyday, I had worked twenty seven years as a successful model and most important I was a mother of a six year old little girl.At first I suppose I was in denial and could go about my daily life as usual, I figured now that I have medication I could continue to work, swim and have a active productive life.Often Lupus can go into "remission" but in my case remission didn't come, it has now been over eight years and I go from my bed in my bedroom to an electric bed in my family room. Alot of the times I need to be assisted when walking and spend a great deal of time in the hospital so that the doctors can come up with a new "cocktail" of drugs as I grow immune to the old ones.I try to be as bright as possible and hide the pain, which never goes away so that my daughter won't worry about me. But now this is just a way of life for us, my daughter comes home and tells me about her day as I lay in bed. On a "good day" at times I can drive to the store but need a electric cart in order to get around, to me I find it embarrassing as I get a lot of stares from people thinking that I'm not nearly disabled enough to take up a handicap parking spot nor be in a electric chair. By looking at me one would not know I was disabled, but what people don't see is on the inside.I have to make sure I tell cashiers not to pack my bags to heavy or I can't carry them in the house and I find myself whispering the reason why this has to be done so that they will be more patient with me.

with me. A nightmare is shopping where you have to pack your groceries yourself and the cashier is shoving all your groceries down the conveyor belt in order to get the next customer through, squishing all your bread and making your feel uncomfortable with the exasperated stares. I find now before I ever go through a checkout that I tell her that I will be taking awhile and to please be patient with me. I never thought that this would be my life in my early fifties. I waited to have a child so I could spend quality time with her, go on field trips, take her to Disneyland, Hawaii and other places, swim in the ocean with her and I could think of a thousand other things, of which none will come to be without aid.Even in Second Life I have to be careful to avoid "drama" like I mentioned before STRESS cause major flare ups for me, so I try to be totally drama free, and that includes my relationships if there is any drama, I have to end that relationship. I'm careful to tell my partner everything about my Lupus so they're aware of what the stress can do to me.Now I am writing a daily diary (I have a computer where I can dictate and it does the writing for me) to tell her exactly how special she is, making her cookbooks of my favorite family recipes so her father can give it to her when she gets married. I pray with everything I have in me that I'll be there to give it to her myself but I'm afraid I'm not sure if this is going to happen.On a brighter note.. I have several friends that have Lupus and most are in remission so there is hope. Doctors are working everyday to find a cure and I know they're getting close!! I will be the first one in line when this drug is a reality, then I can live a normal fulfilling life