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The Purple Butterfly- Being Young And Living With Lupus

I struggled with my thoughts of blogging about this topic because it's such a new and private part of my life. However, I have found that there is not enough talk about this cruel disease. So it is here that I will lend my voice....

My story with Lupus began this past summer ('12) about 3 weeks after I had our second son, Chipmunk. During my pregnancy, I had symptoms of what my doctors thought was Pre-eclampisa; and I was hospitalized on bed rest from 26 weeks until I had my son at 34 weeks. After giving birth my symptoms seemed to go away until about 3 weeks later when I developed a rash on my arm. I thought nothing of it because my skin is sensitive and I thought that I had touched something I was allergic to. After it became itchy and other symptoms began to occur like swollen joints, my husband and I decided to go back to the Dr's office.

 At first the only thing they were concerned about was my BP which was still higher than normal they attributed my symptoms to my bout with pre-eclampsia. They gave me some Benadryl and Tylenol and assured me my symptoms would soon go away. However, they had only just begun. Eventually, my symptoms were so painfully unbearable that I could barely hold my son to nurse him. It was then that I had my husband bring me back to the doctor, this time we went to the ER.

 My visit to the ER got me a room up on the 3rd floor as a resident patient. What followed were tests of all kind from blood draws and X-rays, to a bronchoscopy and kidney biopsy. My relief came when they started treating me for the preliminary diagnosis that reduced the painful swelling and rash on my arms and legs; and my sorrow came when I was positively diagnosed with stage 4 Lupus Nephritis and kidney failure. Which, because of the meds I have to take, basically ended my ability to nurse my son; something that after not being with him for 3 weeks, I was heartbroken to hear.

This disease, like many, is a very difficult thing to live with. I typically have more good days than bad; but I have to remember that even though I may be having a good day, this disease is constantly ravaging my body. I feel so blessed to have the great team of doctors that I do. From my nephrologist to my dermatologist and everyone in between. So while I know this is a lifetime disease that keps me at the doctor's office every 2-3 weeks, and could possibly kill me; I am optimistic that my doctors will work hard to ensure my quality of life stays as close to normal as possible

I am also immensely grateful that we had Chipmunk when we did. Who knows what status my health would have been in before it was caught. He saved my life. Literally.

Do you know anyone with Lupus? Do you have Lupus?

For more information on Lupus and how you can help find a cure click here


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