Kristen's Lupus Survivor Story

A week before my fourteenth birthday I woke up with an unexpected black eye from no one knew only God. It last a week then i went to visit my mom in Franklin,NC and my nose kept bleeding and I couldn't open anything without my hands hurting, and my feet were turning purple and blue from the cold weather and I was getting bumps on my hands. When I got back from NC I was sick so I then went to the doctor and my leg was swelled up and I showed my dad. It hurt so bad I couldn't even walk on it. I went to the doctors for everyday for a week and finally went back to school on that Friday January fourteenth two thousand and five. I was at Caloosa Middle school when the school got a call from my dad saying that they needed to get me and to grab my books because Doctor Flores my doctor needed me there as soon as possible. So Mrs. Brewer came and got me and then took me up to my locker to get my books, I did what I was told and then finally it came out of my mouth " Um, what's going on here?" Then she said "Your dad called and he said that you are needed in Saint Petersburg as soon as you can get there." Finally my dad got to my school and said thanks to the teachers that helped me get ready and all. When we left Caloosa my dad told me he did not why they wanted me up there so quick and that he called my grandma Phillips from my moms side of the family. We got to my house and in packed a few things because I did not know how long I was going to be there. Then finally we left, and were on our way to Saint Petersburg. I slept most of the way there until we stopped at McDonalds for lunch because none of us had eaten that morning or anything. After that we finally got to the hospital and went to the registration counter and got all set up and they gave me my room number which was room 370B southwest. Which meant I got the room closest to the window. But anyways when I got to my room my nurse came in and started asking me all these questions; I do not remember most of them. Then she took my blood pressure and it was 160 over 100. I was so scared I started to get tears in my eyes because I knew that my blood pressure was way to high for anyone. After that my doctors came in to see where I was hurting and all.

When my doctors left I settled down and called my mom to see were she was at and everything and then my dad and grandma talked to her. So then my grandma told me my mom was flying down tomorrow: I was so glad. Later that night I had to get an ultrasound on my leg to see if there were any blood clots: thank god there weren't any.

The next day I had lots of blood work done and got my IV put in my left hand. My doctor suggested to me that I walk around so I listened to him by doing that as well as I played games with my grandma before she went and got my mom from the airport. Then my grandma came back and my grandpa was there as well as my mom and we all went into the game room and played rumikub. It was a very tiring day so I went to bed sort of early and I had no roommates which meant it was a very quiet night for me and my mom who stayed in the hospital room with me.

On Sunday most of my family came to the hospital to see me; so it was another tiring day for me. But then as I was just laying in my bed I overheard my parents talking and they said that my older brother who came up to visit me was in the emergency room; then my dad had to go back to Cape Coral because he had been with me almost for four days. So, my grandma stayed with my brother and my mom stayed with me.

I took a shower that night and I had accidentally got my IV a little wet so I had asked the nurse to retape it she accidentally pulled it right out and I was ordering me some food strawberries and angel cake and I was not ready for it who would be?. But anyways they ended up giving me a new IV but waited till the morning to do it and then they had also put me on my liquid steroids, but they put the new IV in my right hand so it was hard to write and stuff. Tuesday is when they had my kidney biopsy and it went good. One thing I was thinking was that no matter what happens its all going to come out to a solution for me and my family about my health.

Later that day my doctors came in to give us the information and this is what he said "Well, she has Lupus and the kidney biopsy went good but she has inflammation in her kidneys, and it is at a level four and there are six levels." I was thinking I never thought I would ever get diagnosed with anything and the worst part was that I never even knew Lupus existed. Wednesday came around and nothing happened besides every three hours they came in to check my temperature and my blood pressure. That night at midnight I got my first round of chemotherapy treatment called Cytoxan or (cyclophosophamide). The chemo took four hours but the whole treatment took six hours. The next day I got my two pints of blood and was really tired afterwards. At 8:30 in the morning my doctor came in and told me that I was going home the next day; I was so excited I was ready to get out of the hospital. Later that day a college student came into my room asking if I was willing to answer questions for him and I was willing to so I answered the questions and then went back to bed. Finally on Friday at 11:30 in the morning I got discharged from All Children's Hospital.

Every month I had to go back up to Saint Pete to get my chemo treatment I was always the first one there and last one to leave. I also had to get blood work done every month. So it was a very long six months. And it still is but I am off of Cytoxan and I am taking chemo pills. I take like ten pills a day but I don't really care because I take them all at once. The medicines I am now on are- Prednisone, Enapril, Norvasc, Hydorxychlorine, calcium pills, Cellcept, Baby aspirin and Zoloft. I am doing good now I have not had one flare up since getting diagnosed and that is great. Well I hope you enjoyed reading this.

Monique Padilla's Lupus Survivor Story

it started when i was 12, i was only a little girl with major goles in my life. i wanted to be the first female in the NBA. but then one night it all started with me having pains in my wrist and knee. i thought it was only because i had been playing soccer n' had a big game that day. then that same night around midnight i woke up screaming and crying because the pain was so bad. well they thought i had "cancer" but two months later and after being in the ER every weekend i found out it was SLE.

about a few months later... i still had been dealing with alot of pain, it was so bad i couldn't even go to school or walk or pretty much do anything. i had been in and out of the hospital months at a time. then one day the pain got so bad and they had me on a morphine drip, and that wasn't even helping the pain. the doctors wanted to send me home to pretty much lay down to rest... more like pass away at home but my mother wasn't having it. she found STANFORD MEDICAL CENTER and they had me on a plane with in 24 hours heading out there.

about two years later, i found out that the lupus was affecting my heart. i've had three open heart surgs. from it. and also in third class kidney failure. i've had six near deaths but i'm still living strong and now i'm 19 and trying to live a normal life. yes it still effects me here and there but i've learned to deal with it and not let it deal with me.

yes i do have lupus but lupus doesn't have me. thank you so much for letting me get some of this out to the open and the world. if you would like to ask or talk to me about thing you can always write me an email [the0nelittlelady@aim.com] or even write me on myspace [myspace.com/duh_lil_princess].

A Lupus Memorial: Susan Wargo-Mohr

Susan Wargo-Mohr of Binghamton: Susan Wargo-Mohr, formally of Scranton, Pa., and Ithaca, N.Y., passed away peacefully March 11, 2008 in Binghamton, N.Y. Susan was born October 21, 1959 in Scranton, Pa., daughter of the late Joseph T. and Lorraine Gilbert Wargo. A truly gifted Violinist, Susan's passion for life and her "spunk" made her a joy to be around. Susan is survived by her loving daughter, Jessica Lorraine Mohr, Ithaca, N.Y., (Mike Hollenbeck); and her fiancée, Mark D. Terry, Binghamton, N.Y., and his daughter, Erin Ballas (Dustin), Johnson City, N.Y.; her brothers, Joseph T. Wargo, Jr. (Madeline), Richmond, Va., and Perry J. Wargo, N.Y., N.Y.; and her first husband, Timothy S. Mohr, Ithaca, NY. Susan graduated from Scranton Central High School, Scranton, Pa., and attended Ithaca College where she studied music performance and played in the string orchestra under Pamela Gehrhart. For over 30 years, Susan was a Violinist with the Northeastern Pennsylvania Philharmonic, B.C. Pops, and Binghamton Symphony; Susan loved playing Second Violin. Susan studied The Suzuki Violin Method at Ithaca Talent Education where she earned her instructor certification. Of her many accomplishments, her most memorable were her "gigs" with The Moody Blues, Olivia Newton John, Cab Calloway, Benny Goodman, and Tony Bennett. Her strength and endurance were an inspiration for all who knew her. She will be greatly missed. Susan's family wishes to thank all of her many friends who lent their support during the challenges she faced. A funeral service will be held 10:00 a.m., Saturday, March 15th, at The Thomas J. Shea Funeral Home, Inc., 137 Robinson Street, Binghamton, New York. Burial will be in Scranton at the convenience of the family. Friends may call at the Shea Funeral Home Friday from 4 till 7 p.m. In lieu of flowers, friends wishing may make memorial donations to the Lupus Foundation of America, or the Animal Care Council of Endicott, N.Y., in memory of Susan Wargo-Mohr.

Angie's Lupus Survivor Story

I am a 42 year old single African- American mom currently battling fibromyalgia, and adjusting to disabilng NPSLE -neuropsychiatric systemic lupus in a severe form involving central nervous system complicated by APS(antiphospholipid syndrome) that leads to chronic DVTs (blood clots). Here's my most recent anecdote of survival. Having given up ambitions of a career in medicine to live on disability benefits for the last decade, I was so excited to be in remission and starting a new job in June 2004. My dreams were defered again by a very sudden and aggressive attack with hemolytic anemia reducing my blood cell counts to 10% and shutting down my pancreas and liver. I narrowly escaped death. I contribute my survival to my faith in God and his grace to allow me to live in order to to raise my teenage son, who has no one but me. Once the crisis was over, I was completely paralized by the muscle atrophy of weeks of immobility in the hospital bed. Once home I quickly rid myself of walker and potty feeling euphoric from the high doses of IV steroids. Before the completion of a 6-month course of chemotherapy Cytoxin, I developed shingles in two quadrants of my face and relentless neuropathic pain. The side-effect of swollen feet kept me out of shoes and caused DVTs in both legs to be dangerously overlooked. A Greenfield filter was implanted to reduce the potential for blood clots to travel silently upstream causing pulmonary embolism and death. Before I could rid myself of the home nurse and port-a-cath, I was back in ICU with life threatening septiciemia, a systemic infection of my blood thats often the cause of death for lupus and cancer patients.