What is Lupus?
Patient Stories
Julie's Story
It all began with excruciating migraines, extreme fatigue and weight gain back in September, 1997. I was twenty- three years old at this time and working on a Masters degree and planning the wedding of my dreams to my college sweetheart. Because I was under a great deal of stress, I didn't put much thought to the pain getting in the way of my everyday life. That is until I realized I could no longer walk up a flight of stairs because of the pain in my chest and my shortness of breath.
Still, I figured I must be out of shape.. So I tried to exercise in the little spare time I had. Not only was I not getting fit, I was gaining more weight and losing my appetite as time went by. My joints were swelling and pain overcame my entire body. I didn't understand it. I had never felt such intense, extreme agony before and was unable to describe it to anyone. I looked fine on the outside, it was my insides that was tearing me up!
After suffering with these bothersome symptoms for months, I finally went to see a doctor. It was now May 1998. The doctor took one look at me, and knew from the way I was walking that something wasn't right. One urinealaysis showed significant blood and protein. I was sent directly to the hospital where countless number of tests were performed to determine the cause.
Eleven days later, Lupus Nephritis was diagnosed. I was put on Chemotherapy, Plasmaphersis, and many other medications before I was discharged. Doctors told me if I would have waited another day or two, I could have gone into cardiac arrest due to the amount of water on my chest and on my lungs.
Two years of chemotherapy and medications finally put me into remission. That is until the year 2004 when I had another flare.. Quite possible the worst flare of my life!
I had the same symptoms as before, with quite a bit more joint pain. However, the medications that saved my life in 1998 did not have the same life-saving affect on my body. My symptoms were not improving, only getting worse. There was only one option left. to contact the most educated doctors in the U.S at the Mayo Clinic in Minnesota.
I ended up flying out there as soon as possible praying to find a treatment that would potentially save my life. Knowing there is no cure for lupus, I just wanted to come home with relief from this devastating, painful, excruciating disease, so I could be a mother to my three-year-old son!
After endless blood tests, x-rays, cat-scans and days of waiting for results, I was finally given a treatment called Rituxan. This used in combination with Cytoxan was going to be administered twice. And yes, it did put me into remission, for the next six years!
I am currently now in a flare, dealing with severe migraines again, fatigue, joint and muscle pain and hair loss. I am on Cellcept and Topamax to control the migraines. Each day is different day for me, which makes it difficult to plan anything. I am thankful to have understanding friends and family who support me each and every day while I suffer through this very unpredictable disease!
Lupus is a disease many women, and few men suffer from. Yet there is little information or recognition out there. I had to change that, for myself and for others. I decided to write and publish a book about my personal story in dealing with this very debilitating, unpredictable disease: "Julie's Story, My Life With Lupus". I wanted to let others know they are not alone when struggling day to day with lupus. It is a real disease that we have to live with daily. But it does not define 'who' we are. There is no cure.. But together, with awareness and knowledge, maybe someday there will be!
My book is available online @ BarnesandNoble.com, Authorhouse.com, and Amazon.com
Julie Miller (USA)
Facebook: Julie Mack-Miller
May 2010
