My name is Kathleen. I’m living with systemic lupus. I was diagnosed in 2005 with
lupus and have been on Benlysta since 2010. I’m struggling every day with pain, fatigue and worry about my future.
I can’t work anymore because of my disability. But I don’t let it stop me from living my life. I’m into adaptive sports like scuba diving. My insurance has increased 51% in the last two years and it’s been difficult for me on a fixed income . I’m a cancer survivor and I miss driving and I honestly feel that what doesn’t kill me makes me stronger and sometimes I feel like the strongest person in the world. And other days I feel alone and lost. But I have discovered an entire world on Twitter of other lupus warriors and lupus survivors .
I hope to help raise awareness about Lupus and maybe one day there’ll be a cure. I have no family support but I have a service dog named Iris who helps me everyday.
I 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.
Shortly After my SLE diagnosis, My body shut down and I went into septic shock. A total of 3 times in 2005. Doctors the first time expected the worst, my husband thought he would be a widower with 3 boys to raise on his own.
But that didn’t happen. I pulled through. I’m too awry to pass yet. Today, I am stronger than ever.
Hi, my name is Denise I have Lupus (SLE) since 2004, I also have Sjogrens, Raynauds, RA, Diabetes, OA, Neuropathy, DDD, Herniated disk in my lower and upper back, I have sleep apnea too. I have thyroid problems and been having seizure symptoms and TIAs since 04 I was in and out of hospitals because of it. I was on Gabapentin for 6 years and my Neurologist said he, would wean me off it because he thought maybe that was why I was having the symptoms of TIAs and Seizures. Well, he was right I am so glad I got off that medicine I have not been in the hospital for over a year since being taken off that medicine. I have been in and out of a wheelchair since 2003. Since 2011 I have been back in the wheelchair. I used to dance ballet and Jazz and tap for 20 years. I fought for SSDI it took two-in-a-half years to get accepted.
In January 2013 I had a Radical Hysterectomy. Because they suspected I had uterine I think of all the changes in my life through the years and sometimes I feel like it is not my life, sometimes I wake up in the middle of the night and think this is a nightmare, but it is not, it is my life. I have had to accept it. Writing helps me accept my life as it is.
I wrote my story to let others know that no matter what you have been through, that you can make a good life for yourself. I share about being abused and being a survivor. I share about my sobriety. I stopped drinking in 1995. I share about finding my birth mom. I share about my loving husband. He is such a sweet heart. My husband and I met before I was ill. Are relationship has been wonderful and very hard because of Lupus, I feel our relationship is growing stronger because we both take time for each other and we listen to each other. Lupus has taught me to communicate and talk things out better. Communication is important; I have a peace in my life today.
I am a Lupus advocate here online. I enjoy sharing with others helping others. Life is short so I feel we should enjoy each other’s company and help each other. God brings the right people into our lives for a reason. To read my story. “Thank you God. One Lady’s Journey Within.”
Here is my new blog Where I share poems and more.
The reason I write is because I want to share with others that no matter how bad our life may have been we can have a good life. We are able to live and be happy. I am so glad to be able to share with you. Denise Love
I am a Lupus survivor for almost 30yrs. Diagnosed in 1985. Since then, I have also developed FM & Raynaud’s. I am also a cancer survivor having lived through Thyroid Cancer as well as Breast Cancer. While I am a survivor, my cross to bear is the fact that my precious daughter did not survive this disease, succumbing to it at the age of 24 in 1999. So, my survival story is more a story of living my life to honor her, to be someone that she is proud of, and, of
most importance, to helping others who suffer from this disease and any other autoimmune disease.
I run an online support group www.wehavelupus.com, where we have been providing support, comfort, information, and understanding to anyone suffering from the 60+ autoimmune diseases. I dedicate many hours to this site, as well as to the sister site on Facebook. Lupus is such a heinous disease and affects each of us differently, my goal is to increase awareness as well as to provide understanding and support.
I pray for a cure, but until then..I pray for pain-free days for each and every one of you!
My name is Angie and in the 90’s I was diagnosed with Lupus. It was actually very fast. I went to my Primary Care Physician three months in a row with the flu and flu like symptoms. He decided to run some tests and on my follow up appointment he sat me down and said, ” all your lab work is great, excellent but you tested positive for Lupus we also did an EEG let’s get it and look at it.” When he came back he told me everything on the EEG looked great except my theta waves are hitting while I’m awake. I just looked at him for about a minute let it absorb then told him I’m really glad he didn’t do a pelvic exam because everything else is broken. We both laughed https://www.cialissansordonnancefr24.com/ and it took the tension out of the room which was a relief. Then he explained what Lupus was and how it would change my life and I started slowing falling down the rabbit hole. When I finally hit bottom I was confused, scared and felt so relieved to know I was [not] actually crazy there was actually something wrong with me. So my PCP (Primary Care Physician) set me up with a rheumatologist. Mistake. You know what I mean if you have ever been to one before. We are the red-headed stepchildren of rheumatology. Especially back then. When I went to the appointment it felt like everything was spinning out of control. The doctor came in asked a few questions but didn’t give me time to answer and didn’t allow me to ask any questions and I had a lot. Then he handed me a script and left. No instructions. No information on side effects. I had no idea what to expect. So I started falling further down the rabbit hole. More like spiraling. Like a good patient, I got the scripts filled. Methotrexate, Plaquenil, and quinacrine. I had no idea what I was getting into. I started taking the medication and here came the rabbit, “Read the directions and directly you will be directed in the right direction.” All I was thinking was It would be so nice if something would make sense for a change. I didn’t need to read the side effects because I had everyone. The medication was worse than the Lupus.
I was working night shift and I always took the methotrexate before I went to bed on Thursday. I had already gone to sleep when the vomiting woke me up. It was so severe I was urinating on myself. I didn’t realize my daughter who was six had stayed home from school because she was sick. She walked into my bedroom and just stood there. In shock. She finally started crying asking mommy what’s wrong with you. At that moment I decided the medication wasn’t worth it. I choose quality over quantity when it came to my life with my children and would make the same the decision again. So I pulled myself out of that rabbit hole and back into the real world. Not realizing what it was doing to my body. Back then most people had never heard of Lupus nor how dangerous and deadly it can be. So I went about my life trying to forget about that rabbit hole. I would have the joint pain and headaches but push through it. The fatigue made daily life extremely difficult but what choice did I have. I had three beautiful babies that depended on me. I went back to my PCP and he wasn’t happy but he gave me a little advice I’ve carried with me. Prednisone, which may make you feel normal again will take years off your life. Stay away from it when you can. I will follow that advice the rest of my life. I am actually one of the lucky ones. Most people go years without knowing what is wrong and by then the damage is done. I at least had a choice. So this is the beginning of my story and how I have learned to live with Lupus.
I am now trying Benlysta. Having some pretty severe side effects today. But I have faith. It will work. It has to work I have severe CNS Lupus with Dementia, meningitis, encephalitis, and cerebritis. So it has to work.
I 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
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….
My 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
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.