Tag Archives: lupus

Autoimmune disease Facebook support group

Some of you may know that I have lupus, an autoimmune disease.
So I am hoping to connect people by starting an online support group for patients and their families, start the conversation about their struggles with autoimmune disease, living a healthy lifestyle and staying POSITIVE AND STRONG when you are dealing with autoimmune disease. So if you know anyone that might be interested in joining this group please share!
To join this free Facebook group click here

Lupus Flare #tbt Listen to Your Body!

It has been a few years, but I woke up today with a horrible lupus flare. In May 2005, six months after I got married, I was diagnosed with SLE systemic lupus and lupus nephritis. At that time, I could barely walk and was in so much pain it felt like my whole body was on fire.
Thanks to a great team of doctors, my lupus has been in a remission for the past eight years thanks to a daily cocktail of medications. Every now and then, though, my body will remind me that as much as I think I may be in control, I’m not. I know the next few days I will have to deal with stiff joints and muscles, walking slow, and feeing exhausted. But I know if I adjust a few things this week, I should be fine in a few days.
I can’t stress enough how important it is to listen to your body and have conversations with your doctor. When you know something isn’t quite right, follow these tips:
(1) If you don’t feel quite right and your instincts tell you something isn’t right, tell your doctor. Having an open line of communication with your doctors is critical to keeping you on the road to recovery. When I first got sick, I knew something wasn’t right and my first rheumatologist blew me off. When I was admitted into the hospital, I was introduced to a new rheumatologist who I credit with saving my life. 
(2) If a doctor doesn’t believe you, get another opinion or two. There is only one you — and you know your body better than anyone. 
(3) Doctors don’t always have all the answers. Doctors are there to help, but they ‘practice’ medicine, and they will tell you that too! 
(4) Don’t play doctor — there is a reason why they do what they do. For example — some people will go to the drugstore and buy cough syrup when they are sick. However, more than often, people buy medication for symptoms they don’t have. That’s not a good thing! Check with your doctor before self medicating for any potential interactions or allergies.
Kpl 🙂