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I am mother of two young, wonderful little girls that consume most of my time. When I am not with them I can often be found here or on Facebook!
I am trying to raise $2,000.00 to cure lupus for the Alliance for Lupus Research.

http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/498151110?team id=58650&pg=team&fr id=2540



Here is my personal lupus story:


I spent many summers with my family in the Outer Banks of N.C. from childhood up until recently. In my teens I would tan quite nicely laying in the sun. When I turned about 15 years old I began getting rashes all over my body whenever I went in the sun. I attributed this to heat rash and brushed it off for many years. I moved out and attended College at Rutgers University in New Brunswick, NJ (Where the walk is!!!) and attempted to maintain a job, my studies and my social life. I found myself sleeping whenever I could, often missing class and skipping studying and social activities. I went to the infirmary after feeling so exhausted that I didn't know what to do with myself anymore that I felt something might be wrong. I was diagnosed with mononucleosis. I know believe that was a misdiagnosis.


I struggled throughout college and managed to graduate with a 3.0 GPA. I left college in 1999 and went right to work feeling better and less fatigued for a while but after a few years of working I often found myself fast asleep at 6 pm with major activity going on around me (falling asleep on the couch with friends having engaging conversations).
I still didn't think anything could be wrong in fact I never even got allergies, the cold or the flu. I hadn't been to the doctor in years besides my visit to the infirmary at Rutgers. I changed jobs and then things started happening that I couldn't ignore. I would start waking up with a painful finger joint or wrist and just write it off as "I slept on it funny". Well the pain got progressively worse and it invaded every joint in my body. I couldn't start my day without taking 10 Advil because that was the only thing that made the pain bearable enough to function in my normal life. All of the things I took for granted like buttoning my jeans, turning on the faucet, opening the door became a challenge to overcome. I began having neurological problems in which I could not see in parts of my field of vision, the bottom of my feet hurt to walk on them, and my scalp hurt to the touch. With all of this going on in my body I appeared from the outside looking in "normal". I felt like I was doing a bunch of complaining to people who didn't believe or comprehend the intense amount of physical and emotional pain I was in. I was 24 years old and I thought I was going crazy.


I remember vividly one occasion sitting in an easy chair with the television on in the background and just sobbing because I finally realized there had to be something wrong. I couldn't just chalk it up to "sleeping funny" anymore.


As someone who believes everything happens for a reason, the timing for my insurance to kick in at my new job was perfect because it corresponded with all of these symptoms I was experiencing. That same month I got my first health insurance plan.
I finally made a decision to go see a doctor. I went into the office thinking I was crazy and thinking she would think I was crazy so I immediately started sobbing and explaining what was going on with my body. The doctor told me to relax because she hadn't even tested for anything yet. I managed to compose myself, took my script for the bloodwork and immediately got my blood drawn.


The doctor called a few days later and I could tell in the tone of her voice and her hesitation on the phone that there was going to be bad news. She told me I had lupus and started me on steroids (Prednisone) right away to decrease the inflammation. At that point of my life I had never even heard of the disease before. I looked it up online and the first thing I saw of course was premature death. I don't know if that is what shone out at me because that was the worst that could happen, but I knew I was really frightened. I did some research and found out that it is an auto-immune disease in which your own immune system attacks your own cells, tissues and organs causing inflammation and a host of other problems. I was hopeful at that time that I would not be one of the "lucky" ones who would have their kidneys affected by the disease.
I immediately got referred to a Rheumatologist who is part of the practice that still cares for me today. I started a regimen of Prednisone and Plaquenil and got the flare under control for a few years. I got married and got pregnant. All was well with the pregnancy until about 5 months in when my blood pressure shot through the roof. I was also spilling protein in my urine and I swelled up like a water balloon. I got the unmistakable "butterfly rash" on my face and I did not look well at all. My Obstetrician diagnosed me with preeclampsia which is a condition some mothers get during the end of their pregnancy which is "cured" by delivering the baby. I was ordered to several weeks of bed rest at home and several weeks of bed rest in the hospital until we were able to schedule an induction 5 weeks early for optimal health of Paige and me.


My delivery went relatively well with no complications. Paige had to remain in the NICU for a week to monitor her lungs, but all seemed to be well after that. We had a new beautiful baby girl and we were so happy! I continued on caring for Paige while she was an infant but was overwhelmed with intense migraines every day and extreme fatigue that it was hard to put one foot in front of the other nonetheless care for an infant.


After one of my serious migraines I called my rheumatologist and told him about it. He asked me to take my blood pressure. It was something like 200/120. He told me to go straight to the emergency room with that blood pressure because I could possibly have a stroke. I did just that and the emergency room doctor gave me a random blood pressure diagnosis even though I explained to him that I had lupus.


I was finally referred to a Nephrologist after much time had passed. Apparently I didn't have preeclampsia because my blood pressure never returned to normal after giving birth. I saw the Nephrologist who drew some blood, took some urine and immediately scheduled me for a kidney biopsy. The results of the biopsy concluded that I had Class IV Diffuse Proliferative Nephritis which is the advanced stage of lupus nephritis with definite risk of loss of kidney function; typically treated with high doses of corticosteroids combined with immunosuppressive drugs.


Just great I think. My mind races throughout all of the scenarios: drugs, chemotherapy, dialysis, kidney transplant, and even premature death. I couldn't bear the thought of dying when my daughter was so young and to share a life with her. I stayed in that dark place for a while and then I proceeded with the treatment. What other choice did I have? I did a 3-4 day hospital stay with intravenous Cytoxan and High Dose Steroids. Then the regimen was 6 months of outpatient chemotherapy treatments once a week to hopefully suppress my immune system enough to not have it attack my kidneys again. I trudged through this a fighter the whole way while running a business from home, raising a one year old child and maintaining the house. My hair fell out on my pillow and I could barely walk up the stairs during that time but somehow I mustered the energy to push forward with the unbelievable support, and giving nature of my family to be there to help me get done what needed to be done.


Numerous check-ups, blood work, 24 hour urine collection, a pregnancy which ended prematurely but didn't cause a flare, and many years later I am in remission and I feel great! Then….returns the all too familiar symptoms of fatigue that feels like I was knocked over by a Mac Truck, fever, joint pain, bruising, foamy urine and quick weight loss.


I knew right away that I was flaring again I just needed confirmation. I went back to the rheumatologist last week who did blood work and a urine sample and my suspicions were confirmed. I'm back to square one with these kidneys of mine. I don't know the route I will be going this time as far as treatment is concerned, but I am determined to be present in my children's lives for as long as I possibly can. Walking through this will take every amount of energy, gumption, perseverance, faith and hope that I can muster up from within myself. As opposed to my first kidney inflammation, this time around I am going into the battle with a positive attitude and I have even more people cheering me on in my amazing support group whom surround me with love every single minute of the day. If I do what I have to do as recommended by my doctors on a daily basis, I believe I will be able to live a long, fulfilling, exceptional life. I would like to share my experience, strength and hope with other lupus patients that by facing the fear of this disease head on you can live a purposeful, meaningful life with lupus.


I am a fighter and a winner and I want to help out in any way to find a cure for this disease so that others might not have to go through the struggles that I have had to endure. So I ask you "Do I look fine? Because I don't feel fine."






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