So what do you do when you get told you're life is going to turn upside down? (you might want to grab some snacks and make yourself comfy...this is a doozy)
It's been 12 years since I was in the Emergency Room with legs swelling beyond the point of recognizing that they were supposed to be legs, and not just blobs. 10 years since a kidney biopsy concluded with a jaw dropping result. 12 years, since a dr was in my hospital room, telling my mom, sister and my self that there were an over-abundance of white blood cells in the tissue samples that they got during the kidney biopsy.
12 years since the on call doctor said "well, the results indicate that you have lupus." And not any kind of Lupus....but Systemic Lupus Erythematosus, commonly referred to Lupus SLE. And from that, I also have Lupus Nephritis, which means Lupus in the kidneys.
My first thought was "What the hell is Lupus?" and then I looked over to my mom and sister and they were both crying hard. My second thought was "Well this can't be good."
I was given a dose of chemo straight away because of how high of a stage my Lupus was. There are 5 stages of lupus. I was/still am stage 4. 12 years of being a stage 4 Lupus Nephritis fighter.
After the chemo IV, the doctors put me on oral chemo. And then my body started to reject the pills, one way or another. And the doctor who was treating me wasn't listening to me, or my symptoms. At all. So I switch doctors to one down in Gainesville. And my body had rejected the chemo pill for so long (about a year) that by the time that my new doctor saw the damage that was happening, I was already into Acute Kidney Failure.
So off to Shands in Gainesville I went. Where the new doctor put me on aggressive chemo. Which, again, I didn't tolerate. I got so low with my red blood cell count, that I could have died if someone with a cold breathed near me. I can't even begin to tell you how many close calls I've had, from chemo complications, to stroke levels of potassium in my body, to botched kidney biopsies that result in scary blood clots, etc.
While you may be thinking to yourself, "DAMN girl!" it's not all bad. I have learned a lot about this mimic disease called Lupus. I have also had the pleasure of sharing all the knowledge I gain from researching with people, even complete strangers, who go "I know so and so who has lupus, but what is lupus exactly?" I've made new friends with people who've had family members with lupus. I learned to laugh more, because without a sense of humor, you will be doomed. I've learned how to listen to my body and listen well. Don't argue with what it says, because then its a overnight stay to the hospital. I've learned to stop and smell the roses because before my diagnosis, I was working literally 24/7. And if I wasn't working, I was always on the move.
Lupus wasn't well known in the public field, until recently. You'd be surprise on how common it is. For the first 6 years of my Lupus diagnosis, there was not one peep on Lupus, or what it was or any kind of discussion, in the public. And then I was told about billboards in Washington. Not soon after that, I started hearing about the Lupus checklist. And saw commercials about Lupus. I saw a new medication to help with Lupus come into play on the medical field. I started rejoicing in the fact that I was seeing Lupus Walks more often.
Now I am EXTREMELY happy that Lupus Awareness has finally come so close to me. There is a WALK TO END LUPUS in my city. I would love to have you walk with me, or donate to raise funds to help cure Lupus. Because we are so much closer with every penny that goes to help research this silent disease.
So come on, come be Absolutely Lupie with me and we can be CRAZY FOR A CURE together. -