Jennifer’s Lupus Survivor Story

lupus survivors imageI was 19 and in college when I first heard the word lupus. I wasn’t sure how to act or react as my mother and my sister both sat there with tears in their eyes (both of them are nurses and my grandmother passed away at the age of 43 and my mom is only 19 and they think it was for lupus but no one ever told me that back then), so I wondered why they had tears in their eyes when the doctor came in and said that I might have lupus. I was in college getting my degree and neuroscience and was on my way to medical school. Well as the years passed so did my money flares of lupus they came they when they came they went but being so young I wasn’t going to let them stand in my way and I was able to finish my degree but I could not go on to medical school. Then I met my Husband who is a cancer survivor and we have this instant connection that was deeper and life than anyone could know however our dreams of having a child we’re very slim so we traveled the world and did what we could I focused on my career in medicine and finally went back to school and got my degree in medical forensics and ended up working with a well known pharmaceutical company in clinical trials for breast no varying cancer . All through the while keeping my lupus quiet going to flares again and then going in remission and going to flares and going in remission trying to hide it from everybody as if I was a healthy individual who could take on the world. Then I got the best news of my life, I was pregnant! Sadly I was 35 but no less I was pregnant and into thousand seven I gave birth to a healthy baby girl I named her after my mother and my mother-in-law we combined our names to crate her name. So now I had the life… A great husband, A great career in which I was moving up the corporate ladder her and a beautiful daughter. Then one day it all came to a screaming halt! My lupus and taking a turn for the worst I slowly started breaking bones I broke my spine I started breaking my feet started having us have pins and screws in my bones relentless my greens with vomiting every week,pneumonia every 4 to 6 weeks I was in the hospital and then I ended up in ICU I don’t remember much for those couple weeks and I see you but when I did finally come out of the ICU for hog they had told me that I was bleeding in my lungs.& I had been diagnosed with lung disease called interstitial lung disease and then I went into kidney failure in and started having multiple problems with other organs I’m in a permanent adrenal gland organ failure after many years of being on prednisone I had to have a total hysterectomy at the age of 37 I had to go on long term disability which ended up into permanent disability I lost the career of my dreams I lost my self-esteem I Lost myself worth & I saw the toll it was taking on my very young daughter so I try to hide more and more which just led me to become depressed. I am still fighting in and out of the hospital every 4 to 6 weeks was some visits being better than others. I do most of my suffering in silence and I see the financial toll it has taken on our family, I’ve taken out loans against my retirement funds I’ve taken out personal loans going to put us further into and all I really want is for my daughter to have a normal life and a normal upbringing and a normal mom. I’d spend many nights crying a long suffering inside. I am now 43 years old and feel so lonely however I have finally realized I cannot go through this alone anymore. I am now seeing a therapist who is making me realize that if I’m not here then I cannot be here for my daughter. And she’s not worried about the quality of her mom she’s worried about just having a mom and she’s fine with me being just me and some days I realize that and I love to watch her play outside and catch all the beautiful butterflies we have I called them gods luckiest little gift on Earth. I told her I always loved catching butterflies when I was growing up as a girl and that is something that we can have that is ours and that is special and that is incontinent. I lost so many friends along the way and it first I used to grieve that empty hole in my heart as these are my friends since I had since we were nine but I’ve realized over the last 10 years it is more about your family than it is about your friends. And that just because you’ve been diagnosed with lupus doesn’t mean you have to suffer in silence or suffer alone and you don’t have to go to that deep dark lonely place that chronic pain pulls you into rather spend your good days with your loved ones and for now that is what I do I focus on my beautiful daughter and her little daughter flies.

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