Category Archives: Survivor Stories

Cesar’s Lupus Survivor Story

I’ve been battling Lupus and the many other complications that come with it since 2011. Currently 28 years old and a single father still trying to cope with this life-changing disease. I live in Southern Texas, where medicine is nowhere near on par as other places and being a low income living region. For the first 3 1/2 years of Lupus, I had been living in and out of hospitals due to Doctors being unable to diagnose me correctly. Lupus is known to affect women more than men and is a medical mystery due to no 2 cases being the same. The night it started, I had woken up with an unbearable wave of Pain throughout my body. I was unable to move well due to the extreme level of pain. I crawled out of bed, headed to my restroom and started to spew blood orally and rectally and lost consciousness. I recall my parents dialing 911, just before passing out. I woke up in ICU at a nearby Hospital in severe pain and extremely weak. I was informed that I had lost a dangerous amount of blood due to inflammation in some esophageal varices and needed banding.
After consulting numerous Specialists and being given many incorrect medications for the many illnesses I had been improperly diagnosed, it had caused even more damage to my organs and was told by my medical team at the Texas Liver Institute in San Antonio that there was nothing that any Doctor could do to aid me with my complications. I was told to move to Pennsylvania or Florida for proper treatment.
I moved to Miami. My new medical team was in awe with the results of all the different test given. I can specifically recall the reaction of how amazed 2 Specialists were with the fact that I was still standing strong after how badly my body had been beaten. Unfortunately, after a year of constant testing and alternate medications, I was sent back home with nothing but a TIPS procedure performed and medications that are still negatively affecting me and back to square one at the comfort of my home.

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Georgiana’s Lupus Survivor Story

When I tell people my story, I’m always told that I have a lot of Resilience, but I’ve never understood what it means. According to the Oxford dictionary, Resilience means “The Capacity to recover from trauma”. My life has been full of events that will challenge many and provide a whole new meaning to resilience.

My story begins in 1990 at the end of Ceausescu’s reign, the Romanian dictator who took the population’s money for himself, forcing young girls to sell themselves as prostitutes in order for the family to survive. I was the result of this, along with many other babies, unwanted by their young mothers and sent to rough orphanages. The first 8 months of my life were spent in an overcrowded, understaffed orphanage, being left to cry/scream and sit in my own shit for the day.

After 8 Months I was adopted by a New Zealander but was raised in a highly abusive and stressful family. At the age of 12, I was disowned by my mother and father and put in a mental institute, because I was “acting out”. During this time I was diagnosed with Lupus, an autoimmune illness, which later on I had to finally come to terms with. After a year of back and forth of hospitals, institutes, and my parent’s house, my aunt and uncle took me in, however, the abuse started all over again! When I finally thought I was free from being unwanted and not accepted I was told I would have to undergo six courses of chemotherapy as a treatment for Lupus of the kidneys. I remember a family member’s words when I was told this: “It’s your own fault”

While I was undergoing treatment I attended my first year at University trying to do psychology and sociology and failed. Two years later I then underwent open heart surgery due to lupus attacking my heart valves and one year after, while trying to complete a diploma in youth work I suffered a stroke, which fully changed my life in both positive and negative ways.

Negatively, I lost movement on my left side and had to be admitted to a rehab centre. All I wanted during this time was family who would support me during this life-changing experience, that’s why I chose to go to a rehab centre closer to home and family. I won’t get into it but it was one of my biggest mistakes. I felt like I was living in hell, to this day I think about it and realize how alone and vulnerable I was with people who were so ignorant to the fact I was severely unwell and even suicidal. Although I was an adult at the time, they still continued to abuse someone who was having to relearn how to walk and use her left arm! I truly don’t know how I survived, this would have to be my lowest point, but it was the people in Wellington that kept my hopes up!

Referring back to resilience, giving up was never an option.I found strength in believing there was a wider reason such as later on in life, being able to share my story to encourage others not to give up on hope.

Positively I was able to make a fresh start and I went on to live with a Christian family who I met through doing the Diploma, and for the first time in my 23 years of life, I knew I was unconditionally loved, and accepted, no matter the mistakes and the amount of sleeping that I did in the first year of recovery. I know that I come with a lot of baggage Mark and Bridget always gave me the time and space to unload, they changed my life for the better, allowing me to finally love myself and be the crazy, inappropriate, confident women I feel I am to this day, and no matter what, they’re always there for me, and so is the Urban Vision family( a Christian-based community who live by ‘giving your most to the least) who the family introduced me too!

My pain doesn’t stop there. As a 25-year-old, I had to undergo a hysterectomy (my inner lady parts were removed) to give me a better chance at life. During that time I went through hell once again, both physically (almost dying and having to be rushed back into surgery to prevent me from bleeding to death and getting infection after infection) as well as psychologically, Being a young woman grieving the loss of what some people claim to be the means of womanhood! I have to give kudos to Ngatiawa river monastery who took me back and forth to the hospital, and being with me for the entire night where I was so sickly thinking that my time was up! But I’m ok now! Living the Life!

I wanted to share my story to show that you can have times of desperation and pain, but the greatest emotion, ‘that conquers all’ is love! I’m a hard, frustrating case, but Urban vision is my family, After putting my story on paper, I realize how tough and resilient I am, and understand that my life could be so different now, but I think it’s in my genes to fight and not flight!

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Survivor Blogger: Beaten Not Stirred

I try to convince myself I am winning this battle. Hoping that the labs will turn around as I feel the flare settling in my joints and digging its heels in. As I start to realize that maybe the medicine isn’t working, and the handful of hair I just tossed in the trash means exactly what I think it means.

Remaining positive is hard when your physical world feels poisoned by sickness. It’s even harder when you know that things can get worse.

I went back to work this week. I felt stressed and overwhelmed, not because of the work but because of the stress of what interaction means. I felt like I was trying to find a good pace in a really thick fog. It’s work, I am happy it’s there to keep me occupied but it is no longer the most important thing in my life. The clarity I hammered my way through in my three months off drove me to that conclusion.

My body is telling me something totally different. I hung my pictures, rearranged my things, got settled. Something uproarious is happening but not in a good way, in this eerie keep testing me kinda way.

I feel beaten, unfortunately, the warrior in me hasn’t been around for quite some time. I miss her and wonder where she might be because she’s late to the party at this point. She hid behind my eyes for so long and now it really feels like letting it beat me is the only option.

Tired is the only real way to explain it because there are so many versions of the word and they all ring true.

I am physically tired because it’s a symptom of the disease. I am emotionally tired because I feel broken like a vase haphazardly glued together like I could cry for days and there would never be enough tears. I am mentally exhausted from fighting to not only concentrate but to maintain day to day interactions. I feel like my response is always a bit too dead, hollow like an echo hollering back from inside a well.

This is always a struggle. For the last year, every day has felt like some sort of struggle. There are days when my emotions get the best of me and days when I have the energy to fight back and reclaim my time, as it has been so famously exclaimed.

I have never been more tired. Sometimes my soul aches with the weight it feels it has to carry. I know there is burden in every life but sometimes I wonder, and believe, that some receive a greater helping of burden than others. Why? Who knows, I have no theories or educated conclusions I can jump to without getting to a dark place which somehow makes this my fault.

I’m trying my hardest to just let it stir me, no matter how bad it wants to beat me. If it was meant to it would have this summer. This fall or last year or another day.

I feel like as much as it would love for it to be my time, it just might not be. Maybe this is a calm before another storm, maybe it’s not. Maybe this is the way my test goes, and I’m meant to crawl before I walk.

All I want to do is run.

And not have to worry about being beaten or stirred.

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Survivor Blogger: Untilted

I haven’t written in awhile because I haven’t had much too say. I have but my journal and my therapist have been the resting place for those words. They have absorbed those very profuse feelings, and lush they were.

What I can say is I have learned. Funny things, important things, things about myself, others, life, and love.

Setbacks aren’t my kind of thing, not sure if you can pick up that vibe from the last posts but shit getting thrown off just isn’t for me.

Over the past week I somehow ended up with bronchitis. Now the already strangled words are wracked with coughing fits that send my muscles into spasms. I have been trying not to talk during the day if I can avoid it and laughing is just a wheezing mess. Sounds fun, I suppose, but that was honestly just day the last damn straw for me. After I ended up in Urgent Care and a chest x ray later, I was sent home with more medicine (as if this is something I need) and a best of luck. The coughing, the fever, the pain – plus the fibromyalgia and lupus exacerbation was almost too much to handle. I begged. I pleaded.

Then I learned to be sick.

I had very little drive, that much I can tell you. I have put little to no effort into anything I have done because to be honest, that’s all I have had. I feel close to empty, although I am, and have always been, surrounded by love and support. I have seen people’s true colors, and accepted them. That is as emotionally exhausting as it sounds, but also very necessary to heal.

In order to heal myself, I have to move on from others. Sounds like spiritual mumbo jumbo but the truth is, it’s all about being selfish.

I am not happy with the way I look – this time the medicine has wreaked havoc on my physical appearance. My face and neck still swollen, my gums hurt, my stomach is distended. I don’t look or feel like myself, and what this does is add to the depression. Which I can honestly say, had gotten better until I caught bronchitis. Then it all fell apart again.

I have learned that I don’t always have to hold it together, and that just the effort of trying is stressful. Sometimes, a person like me has to cry. I cry when I am happy, I am emotional, empathetic, and proud of that part of my personalty. I am also tough as nails, and unfuckwitable, even when I am writhing in pain begging for mercy. I have more strength in my little finger than most know.

It is ok to be scared. We are always supposed to have it put together, to be fearless. Listen, I am scared, and that is ok. I have a disease that has no cure, that attacked my kidneys until the point of almost renal failure. For the first time in five years I was rushed into treatment, I was fragile, and weak and broken – no matter how strong people wished to say I was – I was not. I was biopsied, poked, prodded, needled – and I am still scared to death. Even through it all. I know in my heart now, that until there is a cure for Lupus, I won’t ever not be scared.

I have learned that one day that fear will turn to acceptance, I can honestly say I am not there yet. I might to ever be, if we are being honest, but that’s where I should end up eventually. I do hope that comes sooner than I really expect it to – because unfortunately I fight too hard to back down – and that might what acceptance takes to arrive.

The acceptance of living a life where a cure isn’t found.

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Survivor Blogger: Controlled Steps

I try to control the sadness.

When my family and I went for a walk today, I felt it on me. Hanging, and pulling me back – not allowing those laughs that wanted to dance on the wind, to escape. I tried. I could feel something in there saying, “Here I am, but I still suck so I am going to stay over here.” I could hear it in my own head. There are times when there are whispers, even in the sun, looking up at the bluest most beautiful sky – I am just a bit bluer.

But not in the good way.

When you open your eyes and the first thing you register is pain, it is viagra pas cher a very hard realization. Some days are worse than others, but lately, everyday is agony and it’s not something that makes LIFE easy. Not one part of your life is easy. From thinking, to showering, to breathing.

Not a thing is easy.

When you’re in pain constantly, you tell yourself you won’t regret the smile you force, the hug you really don’t want or answering the question that really needed no response. You still it do it.

It comes from the people you love. We all understand that love is one of the only ways we all get through this, but when you feel unworthy of it somehow, like that healing stuff might not work. It makes you feel bad to be around the people that believe that with all their might.

I am at that point where I am starting to think about how angry I am. How young I am, and how I perceivably did just about everything right – especially through the space between these rounds of Lupus treatments. I was diligent. I ate well. I exercised. I meditated. I quieted, and mended- or tried to. I tried not to take on other’s baggage.

I tried. ( I will admit to watching too much news, getting caught up in too much shit that wasn’t mine, but fuck it – I was mad and I still am – I need time.)

Yet, still. This last month has happened.

It shows you that you only have so much control. My mind is constantly going, my husband and I spoke about it once. He said women’s number one complaint is that they can’t turn their minds off.

I agree. I think constantly. When I am not thinking I am probably thinking about thinking. This stresses me out. This stress aggravates my disease. Vicious circle.

Read Desiree’s entire blog post here!


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Kenneth’s Lupus Survivor Story

In the year of 2006 on September 11, at the age of 16, he was diagnosed with a sickness called (S.L.E.) Systemic Lupus Erythematosus, class V Lupus Glomerulonephritis with ‘Kidney Disease’ Nephritic Syndrome. Systemic Lupus affected both of his kidneys which almost killed him. A lot of people don’t live long with this sickness; like his great grandmother (Kenneth was born on his great grandmother’s birthday) – who lived only a couple of month before she passed away. Kenneth still has this sickness today.

In the year of 2006, Kenneth was in the hospital often. He went through a lot of surgeries; the first surgery he had was on his kidneys – The results came back and that’s how he found out that he had Systemic Lupus. This sickness is rarely found in males but it’s a very dangerous illness. Hair loss, swelling of the body [He had some much fluid inside of his body that he couldn’t urinate with taking a water pill], back pain, mouth sores, headaches, low stamina, muscle pain, can’t stand/walk for a long prix du cialis en pharmacie period of time and depression are a few of the side effects that Kenneth had to deal with and is still dealing with. Kenneth is in pain every day of his life but he thanks Jesus for giving him the strength to deal with the pains. Every since Kenneth Weal was diagnosed with Systemic Lupus, it changed his life around in a very positive way and that’s the only good thing that came from this sickness.

Please read his full testimony on

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Andrew’s Lupus Survivor Story

Andrew KuzykI was diagnosed with Lupus after a difficult battle with Renal Cell Carcinoma, requiring my right kidney to be removed. Not many men are stricken with Lupus, which cannot be explained by the medical community. All the unbearable pain, signs and symptoms along the way we’re never collectively considered by anyone, including myself. From Gall Bladder Cancer, Malignant Melanoma, extreme fatigue, organ failure, headaches, memory loss, extremely painful joints, nothing ever added up. That is until a routine blood test confirmed I suffer from the incurable disease, Lupus. Suddenly, I began to experience horrendous joint pain, especially in my knees, hands, and feet. I noticed them swelling up and turning red, while the pain only increased in magnitude. I ignored it for months as I take care of my grandkids and 5 chihuahua rescue dogs. I was simply too busy trying to take care of my family instead of taking time to care for myself. My joint pain has increased and due to my physical and mental decline, I am trying to balance how to deal with these life-changing illnesses. I had a great physician in Arizona, who never dismissed me or my condition. Unfortunately, I lost my home in Arizona, relocated to Georgia to be near my 4 grandkids and now live in a small basement with my chihuahuas. I am in a world of hurt right now from the effects of 6 bouts of cancer, sickness, and Lupus. God gives us the strength we need each day. He has also given me my life, my 4 grandkids, and 5 chihuahua rescues, who help me when times are tough, which seems to be quite often these days. Of course, God has given me the will to keep going, no matter how severe my pain and suffering become. I still feel I am very richly blessed even though life is slipping away. I have been in the workforce since I was 13 years old and never in my worst nightmare thought I’d find myself here like this. I have dealt with multiple bouts of various cancer, Ewings Sarcoma (Bone Tumour) Adenocarcinoma (Gall Bladder Cancer) and was forced to have my right kidney removed due to Renal Cell Carcinoma. Orthopedic surgeons were forced to have my left leg sawed in half to remove a large cancerous bone tumor there, which has now been affected with severe degenerative arthritis and I suffered a serious heart attack. I now require double knee joint replacement surgeries but have no insurance. and severe rheumatoid arthritis. Being affected by Fibromyalgia, extreme depression, shortness of breath, high blood pressure, diabetic peripheral neuropathy, advanced Alzheimer’s disease, coronary artery disease, and now this incurable sickness, Lupus for me is quite overwhelming at best. Lupus is one of the world’s cruelest, most unpredictable and devasting diseases with a brutal impact on the human body. The inflammation and permanent organ damage caused by Lupus has harmed everything from my kidneys, joints, internal organs, heart, and brain. The physical and mental implications can be different from person to person. Many people say to me “you don’t look sick” when there is actually a horrible battle raging within my own body and vital organs. I try my best to avoid negativity at all costs and embrace God’s grace and spirit daily. That being said, The physical pain is now so intense I cannot even roll over in my bed any longer and am definitely losing the battle. Sometimes it means taking a four-hour nap simply because my depleted body says “No More”. I cannot work any longer because of my conditions and the pain is so intense. I cannot afford the medications I need to even attempt to manage it. The list of lifestyle changes seems only to grow longer as time passes by and I realize my time here on Earth is very, very limited. I take pride in my ability to keep my spirits up, even in my darkest hours. God gives me the strength I need each hour and every day…even though Lupus, Melanoma and high blood pressure is destroying my healthy organs, which I have already lost my gall bladder and right kidney to cancer. I’m a Grandfather and a friend much like many others who have been diagnosed and cannot physically or mentally function any longer. I simply push forward. Just a small window into my private life. I would be grateful for any prayers and positive thoughts sent my way. I am still here.

Despite Lupus I …

So often we lupies tell our woeful stories of the devastating effects lupus has had on our lives. And as important as it is for us to be able to discuss the difficulties we  face from our illness, it is just as important to discuss what lupus survivors do with our lives despite lupus. Besides Lupus Awareness Month, this month I celebrated my son’s graduation and acceptance to 10 of the top Philosophy graduate school programs in the country including Marquette, Kent State, Boston University, Boston College and his choice Brandeis. It was the proudest day of my life!  Diagnosed when he was 3 years old, I had been sick as long as he could remember. Estranged from his father the same year, he has been the man of the house and main caregiver since then as well. Partly because my CNS symptoms prevented me from driving and partly because I felt public school was failed to challenge my precocious child, I decided to homeschool my son in 5th grade. My participation in his education magnifies my pride in his success. During the family celebration, my best friend praised my achievement, exclaiming, “Despite Lupus you have raised your son single-handedly seen him graduate college!” This inspired me to start the “Despite Lupus…” twitter campaign in which I shared some of the things I have accomplished in spite of my illness and invite my fellow lupus survivors to do the same. There has been an overwhelming response  from followers tweeting messages about the positive aspects of their lives despite lupus.  Some made me tear up, some made me laugh. But most of all they all inspire hope. So here are a few of my favorite replies along with a live stream below in the hopes that they will inspire you too.

Despite Lupus …

I cannot thank you enough for all of your inspiring tweets! You all have proven that we might have lupus but lupus doesn’t have us. Despite lupus we can still maintain quality in in our lives. I would even say that for us Lupus Survivors each day we wake up is all the more precious. The unpredictability and potential threat of lupus makes us appreciate life even more.

If you have not already please join the conversation on viagra discount twitter @lupussurvivors and our Facebook page. Please share what you do despite lupus.

Kathleen’s Lupus Survivor Story

lupus survivors imageMy 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.

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.