Our Annual Giving Campaign has Launched!
Please click on the DONATE LOCALLY link to support our efforts today!
Every lupus patient’s story is unique, but they all have one thing in common: they bravely fight this mysterious disease every day hoping for more research and, ultimately, a cure. Let Dan, in his own words, provide an example of what it is like to live with lupus:
I was diagnosed with lupus 16 years ago after feeling sick and in pain for years. I was stable until 2 years ago. Lupus cost me my job and I was forced to go on disability. In 2018 I developed pneumonia followed by lupus attacking my brain, leaving me confused, depressed, and I had a difficult time concentrating. On top of that, I was dealing with chest pains from the pneumonia and pleurisy (fluid around my lungs) and the joints in my hands, knees, shoulders, neck, and feet were aching.
In early 2019, I found out I had 2 blood clots in my right leg due to Popliteal Entrapment Artery Syndrome (PAES) and by December, I could not walk without cramps and pain in my calves. I then had no blood flow in my ankle and had surgery in which they used an artificial artery to bypass the blood clots. The healing process was a long 3 months because of complications of infection and slow healing due to lupus medications.
In August 2019, I developed terrible pain in my left elbow. At the emergency room, I was quickly diagnosed with shingles. The doctor said that people with compromised immune systems, such as lupus patients, are more likely to contract shingles. I still have nerve pain in my fingers and hand.
Back to the hospital a month later to have surgery on my left knee for the PAES. I still have numbness in my left calf, and I walk with a limp due to my right leg. I am currently going to physical therapy so hopefully someday I can walk without pain.
December 2019 was the roughest month of my life. I was feeling nauseous and had stomach and chest pain, so I went to my local emergency room where I was diagnosed with Legionnaires Disease (a severe type of pneumonia). I was discharged with antibiotics on the afternoon of Friday the 13th. A couple of hours later, I was shivering and could not get warm and then started vomiting. My parents decided to take me to Froedtert Hospital in Milwaukee. All I remember is laying in the back seat and then waking up a couple days later in the ICU. I was told that when I was unconscious a central line catheter had to be placed in my neck and left wrist so they could administer blood and fluids. In the trauma unit, I had a 106.4 fever, acute respiratory failure, and went into septic shock. I was intubated and placed in a medically induced coma. I woke up Monday and my intubation tube was removed and I felt better. I was discharged in a couple days and now I have pericarditis (inflammation around the lining of the heart). With that, I have pain in my chest, neck, and shoulder.
I was diagnosed with pneumonia four times in five months. Then to top it off, I was diagnosed with COVID-19 in June, when I suffered from pneumonia, fever, and headaches. I was in the hospital for eleven days, was discharged, and had to go back less than twelve hours later. I had a fever between 103 and 104 degrees, body aches, stomach pain, and headaches. After several weeks and follow-up tests, my COVID-19 test was negative.
Lupus is one hell of a disease and has left me with chronic pain all over my body every single day. I can’t make plans because I don't know how I will feel each day. Some days I can’t even get out of bed because the joint pain is so severe. On a good day, I try to go out and run errands or hang out with friends, but I know if I push myself too far, I will be in bed the entire next day.
There is no cure for lupus, but I share my story because I believe that with your support, we can better understand, treat, and one day eliminate lupus. That is why my family and I participate in fundraising and awareness events, and support the LFA, Wisconsin Chapter. Because of the work that they and their supporters do, more people will know about the effects of this cruel disease. Without your support, none of this is possible. Help me and the thousands of people in Wisconsin suffering from lupus with a donation today at lupuswi.org. With your help, we CAN find a cure!
Join us in the fight for a cure!
By supporting the LFA, Wisconsin Chapter, YOU are making a difference in the well-being of lupus warriors and their families.
