Category Archives: Survivor Stories

Regina’s Lupus Survivor Story

lupuss urvivors imageI was first diagnosed with lupus in 2010. Although I had 3 positive tests, my doctors insisted that I did NOT have lupus and further tested me for other collegan diseases. I also have RA, OA, Raynauds and Colitis. This came after being mis-diagnosed with MS and Multiple Myeloma; both mimic Lupus. After my doctors mis-diagnosed me, I realized I needed to become my own advocate and find a new rheumatologist and neurologist.That’s when I wanted to become an advocate for other lupus patients. In the beginning of my disease I was really sick and didn’t know how I was going to take care of my then 1 year-old and 3 year-old boys. My husband jumped right into action to help. I found that support from family and friends is key to a chronic disease because depression runs so high with lupus. Today, not only am I a lupus survivor, but I’m a co-founder of a “YOU” Can’t See Lupus online support group (Facebook). I write a blog describing what it’s like to live with lupus on a daily basis along with the daily challenges that come along with the life events. I mentor other lupus patients on how to be their own advocate, where the lupus patients can locate

their resources and how to utilize those resources. It’s my mission to bring daily awareness and educate others on lupus. I reaffirm to myself and others that we will not be defined by our diseases.I have found that if I find one thing that I’m grateful for daily and with a positive attitude my life has been better and will feel better. To me, quality of life is everything. I chooses to feel and look better; “But You Don’t Look Sick” sticks with me and really,, who chooses to look like how they feel, not me! Lupus has taught me a lot during this journey also. I look at life in a different light and don’t take things for granted. For the past 2 years, my dear friend and I have (she’s done it for 3 year but I jumped in the last 2) run the Annual Crystal Lake Lupus Fundraiser. The money we raise benefits the Lupus Foundation of America. We decorate downtown Crystal Lake in purple ribbons, the local stores and community donate baskets and gifts that we make into raffle baskets and we raffle off the items. Last year we raised over $16,000 and this year our goal is $20,000! We don’t stop at May by spreading awareness, for us it’s 365/24/7!


“YOU” Can’t see Lupus Living with LUPUS – A day in the Life

Jennifer’s Lupus Survivor Story

I survived!! I’m really blessed with great family, friends and colleagues. Life changed 2002 for me. I was diagnosed with Lupus..my sister Primary Progressive MS. What a nightmare. Before she expired I suffered a life threatening Lupus Flare. It almost killed me.  After a sour divorce, no real money and lost my career. I decided to start The Lupus Rainbow to help other folks who suffer with autoimmune disorders. I recently moved to Atlanta (my birthright). I’m prayerful by my lifestyle…God saved me for his purpose…to show his mercy….

 

Scott & Amanda’s Lupus Survivor Story

lupuss urvivors imageMy wife Amanda was diagnosed with Lupus six years ago. That is when life became real. She had symptoms prior to that but that day her agony was given a name. She was quickly put on several medications and we tried to learn as much as possible about the disease. As a husband, I naively thought that the medication would magically cure her pain; as it were strep throat or some minor illness. As you probably know, I was immensely wrong. Over time, her symptoms got worse. She struggled with severe joint pain, which consistently attacked the different joints in her body in a very inconsistent manner. Lupus would attack her elbows one day and then move around to her other joints with no apparent regularity. We always seemed to be one step behind the pain. Physical pain eventually mutated into attacking her mind and spirit. This was not the same woman I married. I could see the pain in her eyes and hear it in her words. She always looked defeated. As a husband, the disease attacked me as well but only mentally. It is so hard watching her in pain everyday. I tried not to think about it. In fact, when she was hospitalized for five days in intensive care, I could barely go to the hospital because I did not want to accept it. I was scared like a boxer dodging an opponent. At that point the disease had captured my spirit as well. I wasn’t cialis generique en pharmacie laughing or communicating with anyone, I was existing but I wasn’t living life It was hard for me to accept the fact that there was nothing I could do to make my wife better. In the past couple years, we were told we couldn’t have kids naturally. So we underwent five IVF treatments with no success. In the end, the diagnosis was the IVF was not working because of the Lupus. We were both devastated because we wanted so dearly to have a family. With each failure from the IVF came more disappointment. This was when we hit the bottom of existing and so we lived in stillness for about two years.

I am not sure what happened next or how it happened, but in the last year we stopped letting Lupus control our lives. We have turned to more natural remedies and activities. We do a lot of meditating, relaxation, and positive activities. This did not happen overnight and it continues to be an ongoing process. However, I am now facing this disease head on instead of ignoring it. When my wife is in pain, I lay next to her. When she is sad, I make her laugh. When she has no energy, I tell her I will give her some of mine. When she cries, I let her. It was scary for a while especially in the hospital as I I knew it was serious when the usually spunky nurse couldn’t tell me it was going to be ok. I had to dig deep in my soul and scrape the strength to face this fight. It has taken a while to gather each ounce of courage for it to make a noticeable difference but I have done it and it has made a difference in both of us. Now we have hope, courage, and love that will fight this fight. Recently, we were told there was one treatment we could try to combat the Lupus in regards to the infertility. We were told it was very expensive but hand in hand we just calmly looked at each other and said, “we will find a way” without words. So now we are raising funds to try this treatment and I don’t know if we will but I am willing to try because more than anything in the world, I just want to be a dad. With faith, hope, and love I think it will be ok. Rather I know.

I don’t know if anyone survives Lupus but rather we have learned to manage it. It was a steep learning curve but I would consider us Survivors. Last week we planted some vegetables, flowers, and herbs, and it is exciting to see if they will grow.


If you would like to assist Scott and Amanda please visit: http://www.gofundme.com/makeamiraclehappen

Kesha Dan’s Lupus Survivor Story

Throughout my life, I have always had problems with upset stomach depending on what I ate. I have had walking pneumonia at the ages of 19, 24, and 29. I had shingles at the age of 26. January 2007 I was in and out of the emergency room for what I was told was allergies from changing climates. I am from Denver, CO lived in Atlanta, GA for two years, moved to Tahlequah, OK and am now back in Denver, CO due to my lupus complications. While in Tahlequah, OK I had a terrible cough that would keep me up at night, spots on my face neck and arm that would itch turn red and then turn black. I went to the dermatologist the throat and ear doctor, and even had to go see an eye doctor because I started to get blurred vision. The physician I was seeing from January 2007 up until I was admitted into the hospital was treating me with Prednisone tapers for my allergies, but he would send me home each time. During this time I was beginning to get weak, I stayed in bed all day if I could and at this time I was working at the hospital from 6 am to 6 pm and going to school on the college campus from 8 am to 1 pm. I was losing up to 12 pounds a week. I was always swollen around my foot and ankles. During this time I was really into traveling and was going any and everywhere someone would say come to. I already had 11 tattoos and decided to get another one; (on the top of my swollen foot) I still do not know what I was thinking about. Long story short the tattoo got infected and I started running a very high temperature and could not keep food down. For some reason, everything I ate tasted awful and would make me vomit. I went back to the emergency room and was sent home once again with some medicine for nausea and my slight temperature and my foot infection. I would feel hot all the time but just thought I was coming down with the flu. When I received the nausea medicine it made me sleepy, so not only was I not eating, I slept through drinking too. One day early in the morning I woke up in a cold sweat, my whole bed was drenched. I had my sister pick me up and drop me off at the emergency room. The doctor I usually see was out that day, but they had me see his sister, she took my temperature 102.4 and checked my pulse and immediately started an IV on me for fluids. I was admitted by the infectious disease doctor because he thought the dark spots on my face were due to me having HIV. When that test came back negative that is when he started testing for everything else on the 4th day of my admission to the hospital. I was not diagnosed with Systemic Lupus Erythematosus (SLE) until the 16th day of my hospitalization. I had a bone marrow biopsy and a lymphoid biopsy that removed four from my groin area to rule out lymphoma. The bone marrow biopsy and two days of determination from a panel of physicians decided my life change and diagnosis of lupus. I was in the hospital for 22 days. I look back on this now and am just grateful for the life I am given each day. I am on disability and have had to put continuing online education to get my bachelors degree on hold due to lack of concentration, memory loss, and brain fog. I am unable to work full time and right now part-time work would be difficult because of recent complications that are happening due to lupus activity. I was blessed to receive disability benefits my first time trying but pay so much for medications, surgeries and hospital visits that my income is very limited and I am barely making it. I make sure I smile every day, and try to stay positive it is hard but this type of attitude helps.

Meghan Hartsell’s Lupus Survivor Story

Share your lupus survivor storySixth months after I was diagnosed with Lupus, my sister, parents, and I all caught a 24-hour virus. They got better, but I having fevers. I was hospitalized for a weekend to find the source, but they were unable to find one. My fevers started getting better, and I was released.
By Wednesday, the fevers were back. I began feeling weak and unable to stand up. I couldn’t stay awake for longer than an hour or two and felt extremely dehydrated. That Friday, I was asleep in my bed when my mom came running in my room. She had been about to go out to lunch with a few friends but had a horrible feeling in the pit of her stomach. Her instinct was correct. My temperature had reached 103.5. She rushed me to the E.R., and by the time we got there my temperature had reach 104.2. The nurse had to take my blood pressure three times on two different machines because it was so low she thought it had to be an error. I was immediately put on I.V.s and monitors, and…to improve. I found out later that the 24-hour virus had triggered Macrophage Activation Syndrome, which occurs mainly in younger Lupus patients. This syndrome caused my immune system to go crazy and attack my organs very quickly. It was destroying my liver by the time I got to the E.R. If my mom had left the house that day like she had intended to, I would have had a stroke or a heart attack and most likely would have been dead by the time she returned.
This all occurred a week before my 18th birthday.

It took almost a year for me to recover both mentally and physically. Now, my Lupus is under control and I hope to be in remission soon.

Kelly’s Lupus Survivor Story

I had already been diagnosed for several years before my 52 days ICU stint. I was officially diagnosed in March 2003 (systemic & discoid). I am only 24 years old but, I was 23 when this all occurred.

Truthfully, I was feeling fine until a couple of days before my 52 day ICU stay. I was running a temperature of 103 for 4 days and I didn’t really have an appetite (I was barely eating; the smell of food would make me nauseous). Bottom line, my doctors summed it up “my whole ordeal” to my Cellcept use and a flare. My use of Cellcept is what contributed to my stroke. I had fluid in my cerebellum and I had to have intensive surgery and a shunt brain drain.

I have really only been hospitalized 3 times due to my lupus ( May 2004…….4 days, September 2006…….12 days and my extended stay in June 2007) My doctors contribute my “recent health obstacles” to my use of Cellcept ( I was on this medication from March 2003-June 2007). I was on three 500MG tablets daily of Cellcept. Basically, since it’s NOT widely used in lupus patients (mostly transplant patients), you don’t really see a lot of information about individual experiences. I took 2 pills in the morning and 1 pill in the afternoon, 1500 MG.

When I was talking Cellcept, I had a fair experience, I cannot blame ALL of my side effects on the drug, I was more focused on working and complete my Master’s than going to my doctor regularly (I WAS PARTLY AT FAULT FOR MOST OF MY SEVERE MEDICAL ISSUES).

At first, when I was in the hospital I was taking 100 milligrams (IV) of prednisone.

When I was on Cytoxan for that short period of time, my doctors recommended that I stay on it for longer but, I would be sick for 3-4 (vomiting when I did eventually eat) days after my treatments so, I refused any more treatments with the support of my family after I was “stable”. I only received 3 treatments from June 2007-October 2007. I also had http://en.wikipedia.org/wiki/Plasmapheresis treatments.

I also had speech and physical therapy when I was in inpatient rehabilitation from the time I was discharged from the hospital ICU unit in August 2007 until October 2007.

No, I don’t work, truthfully I can’t work. I need to walk with the assistance of a walker. I have not driven in a car by myself since May 2007. I still have a valid driver’s license and my husband ( We had been dating for a little over a year before I was I diagnosed. ) does let me drive occasionally when he is in the car with me. I am still with in a going battle with disability (that’s a long exhausting story in it self). I have physical therapy 3 times a week and speech therapy twice a week. I am definitely much better than I was this time last year but, I am not 100% there.

Courtney’s Lupus Survivor Story

Share your lupus survivor storyI have SLE lupus, which it affected my kidneys. Hear is a little bit about my story with lupus: For me it was completely out of the blue! I was in the hospital in Nov of 07 with pneumonia and it was at that time the doctors noticed I was passing high amounts of protein in my urine. They did a series of tests and couldn’t find anything, so my family doctor kept an eye on things and sent me to a local kidney specialist. By Jan. of 08, I started to pass more protein in my urine and my creatinine number started to elevate. In Nov, my creatinine number was a .7 and by Jan. it was a 1.9. When the kidney specialist saw that he decided to have me get a kidney biopsy done. So I went to the hospital on Jan 28th so just an outpatient procedure, thinking nothing of it and by that afternoon I was getting admitted into the hospital and the doctor came into the room saying that I would be starting on chemotherapy the next day and high dosages of Predinsone (100mg). He told my family and me that I had lupus which affected my kidneys and that my creatinine number was a 3.9 and I was on the verge of dialysis. So to say the least I was scared to death! I went into the hospital feeling overall healthy. I was a little tired, but I just thought it was because I was working full-time and taking three classes in graduate school and doing an internship. I never thought I had a chronic illness!I spent a week in the hospital and that is when everything in my life changed. I had to quit grad school and my internship, and I was put on temporary disability from work. The doctors put me on cytoxan, and high dosages of Prednisone, along with 15 other different medications, Plaquenil is one of them. The prednisone has made me gain over 70 pounds within the past 7 months, and from the chemotherapy drugs I started to lose my hair. I am a very self-conscious person, so even these adjustments have taken a toll on me! As far as my hair, I have always had really thick natural curly hair, it was my best feature (in my opinion). So when it started to fall out in clumps, I decided to shave my head. That was scary for me, but it is starting to grow back in a little bit now and I am handling it alot better than I was.I am doing better now, my kidney function is around 50%, and my creatinine number is a 1.3. So I am very hopeful about the whole thing, (at least on most days) I will be honest with you, at the beginning I was devastated and very depressed. But I trust my doctors and I know one day I will get back to living as much of a normal life as possible.

Kristen’s Lupus Survivor Story

Share your lupus survivor storyA 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].

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.