All posts by alupussurvivor site administrator, web designer and founding "Lupus Survivor."

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.

Facebook URL
Twitter URL
Original Blog post URL

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!


Facebook URL
Twitter URL
Original Blog post URL

Medical benefits of marijuana for Fibromyalgia and Lupus

Watch my impromptu talk about the medical benefits of marijuana for fibromyalgia and lupus during a press conference at the Tennessee State Capital prior to the Hemp – Cannabis Rally which took place at the Legislative Plaza. Not only did I get to hear some inspiring advocates speak, I was invited to share my own experience of discovering the medical benefits of marijuana for fibromyalgia and lupus to treat nausea and neuropathic pain. This event was a part of The End Of Prohibition Tour, established to raise HEMP/Cannabis Awareness and Educate Americans.

EndOfProhibition Van
EndOfProhibition Van

The founder, KC Starks, traveling across the nation in the EndOfProhibition bus will tour 10 state capitals in 17 days making speeches, holding rallies and collecting cannabis stories for an upcoming documentary. KC Starks coined by the media as the “Steve Jobs of Cannabis” KC has successfully trained 1,000s of marijuana entrepreneurs on how to master marijuana business models and market opportunities. Chad Wilson, a Kentucky farmer gave a patriotic “sermon” on American freedom and our right to legal access the cannabis plant. that had us ready to stand up and say “AMEN! Be sure to check out his healthy Hemp/CBD products at Representing patients across America, Dana M. Arvidson spoke to us about the National Cannabis Patients Wall.  She inspired us with her vision to create a wall to be displayed in each of the United States Capitals along with a display representing patients from the 39 countries. Learn more about contributing at Later we were joined by other acheter du cialis en ligne Medical Cannabis activist in the legislative plaza including  Toni Woodall Corbin of Parents 4 Pot.

Tennessee Medical Cannabis Advocates
Tennessee Medical Cannabis Advocates

Many End Of Prohibition members/founders have worked on task forces developing and writing HEMP and Cannabis laws across this nation. Working with patients, doctors, politicians, and business owners to develop a safe and responsible industry. Thank you so much, KC Starks, for bringing the tour to Nashville and for giving me the opportunity to share my medical cannabis story.

Medical benefits of marijuana for Fibromyalgia and Lupus
TN Capital Cannabis Rally at Legislative Plaza
Medical benefits of marijuana for Fibromyalgia and Lupus
TN Capital Cannabis Rally at Legislative Plaza

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

Facebook URL
Twitter URL

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.

15 Facts You Didn’t Know About LUPUS

I’m sure there are many lupus facts you didn’t know about. Systemic Lupus Erythematosus (SLE) is a mysterious autoimmune disease with many complexities that are still unknown. The symptoms mimic other diseases and can vary among different patients. When I say I have lupus, the first thing most people say is, “I’ve never heard of that before. What is it?” The conversation then turns into a lot of questions about the illness which I am always glad to answer. I have even helped lead someone to getting diagnosed. Twenty years ago, I wish I had had access to the infomation thats now available on the internet. If tweeted facts had been available, it might have led to me getting diagnosed sooner and avoided the life threatening scenario that led to my diagnosis. In order to spread awareness for lupus, I’ve created some handy graphics that can be easily shared on Twitter or Facebook.  Just click image then right click and “Save as” to your folder.

Test your knowledge. Check to see how many lupus facts you know. Then be sure to share them!

#1 LUPUS FACT Lupus is a chronic autoimmune disease.

#2 LUPUS FACT Lupus attacks different parts of the body.

#3 LUPUS FACT An estimated 1.5 million Americans have lupus.

#4 LUPUS FACT At least 5 million people worldwide have lupus.

#5 LUPUS FACT No two cases of lupus are alike.

#6 LUPUS FACT Most people with lupus don’t look sick.

#7 LUPUS FACT Common symptoms include joint pain, skin rashes, overwhelming fatigue and fevers that last for days or weeks.

#8 LUPUS FACT The average annual direct and indirect costs incurred by a person with lupus can exceed $21,000 annually.

#9 LUPUS FACT Lupus can be difficult to diagnose. There is NO single blood test to diagnose lupus.

#10 LUPUS FACT Lupus symptoms mimic those of other diseases, vary in intensity and can come and go over time.

#11 LUPUS FACT More than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.

#12 LUPUS FACT Early diagnosis is crucial to preventing long-term consequences of the disease.

#13 LUPUS FACT If you notice signs or symptoms of lupus, be sure to see your doctor and ask questions.

#14 LUPUS FACT 90 % of patients diagnosed with lupus are women. Men and children develop lupus too.

#15 LUPUS FACT usually develops between ages 15 and 44 and it cialis generique lasts a lifetime. There is NO CURE.

So how did you do? How many Lupus facts didn’t you know? Hope you learned something new about lupus. Now pass it on!

Hover over any image to share these LUPUS FACTS! Right click and “Save image as” to download and use yourself.

Did you find this post helpful? Tell us about it in the comments below!


12 Common Signs and Symptoms of Lupus

Share the infographic about the signs and symptoms of lupus:  Systemic Lupus Erythematosus or SLE is a mysterious disease that can affect many parts of the body. It mimics many other illness and often gets diagnosed. There’s no simple test, so doctors must consider many factors in order to conclude a diagnosis. The most common symptoms of lupus include headaches, rashes, hair loss, anemia, blood clots, joint pain, chest pains, mouth and nose ulcers, sensitivity to sun, fingers turning blue from cold, swelling, fever and unexplained fatigue. According to Lupus Foundation of America:

Many of these symptoms occur in other illnesses. In fact, lupus is sometimes called “the great imitator” because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia,

diabetes, thyroid problems, Lyme disease, and a number of heart, levitra soft tabs lung, muscle, and bone diseases. Read full list of common symptoms…

Spread Awareness about Lupus!

Share this Lupus Infographic for signs and symptoms of lupus on Pinterest, Twitter and Facebook

signs and symptoms of lupus

Check out this video for more information on the common signs and symptoms of lupus.  It does a great job illustrating antigens, antibodies and the role autoimmunity plays in lupus.  There is an explanation for the three main types of lupus, discoid, systemic, and drug induced.

Do you have lupus? What signs lead to your diagnosis? Were you misdiagnosed?  How do you manage your symptoms now? Which of the three types of lupus do you have? Please tell us about it below. Thanks for sharing and spreading awareness for lupus!

Are you a Lupus Survivor or family or friend of one?

Be sure to share your Survivor Story.

Benlysta First Lupus Drug History

Share the infographic for benlysta lupus drug history:  It has taken more than a century to develop the first lupus drug. The drug Benlysta was not approved until 2011. It was the first drug to be developed specifically for lupus.  Join the Lupus Foundation of America’s efforts to urge congress to support funding for more lupus research.

Benlysta is an investigational human monoclonal antibody drug and the first in a new class of drugs called BLyS-specific inhibitors. These drugs precios de la viagra prevent b-cell proliferation and development into mature plasma cells with a resulting drop in antibody production. This mechanism of action is very well-suited to Lupus whose pathophysiology is widely thought to involve autoantibody formation. Read More...

Spread Awareness about Lupus!

Share this Lupus Infographic on Pinterest, Twitter and Facebook

lupus drug history

Please give us your comments below. Thanks for sharing and spreading awareness for lupus!

Are you a Lupus Survivor or family or friend of one?

Be sure to share your Survivor Story.

The Burden of Lupus

Share these lupus facts about the burden of lupus:  The mysterious and devastating disease of lupus impacts nearly all facets of life including relationships, daily responsibilities, finances, and simply enjoying life.

Spread Awareness about The Burden of Lupus!

Share this Lupus Infographic on Pinterest, Twitter and Facebook

burden of lupus

Here’s a video from a AJMC TV healthcare series where experts discuss the burdens of having a devastating illnesses such as SLE.  Here Michelle Petri, MD, MPH, discusses the unpredictability and poor quality of life for SLE patients and compares a disabling lupus flare to having full blown


Please give us your comments below. Thanks for sharing and spreading awareness for lupus!

Are you a Lupus Survivor or family or friend of one?

Be sure to share your Survivor Story.