What type of lupus do I have and when was I diagnosed?
I was diagnosed with Systemic Lupus and Sjögren's Syndrome in October of 2013. Was diagnosed with Rheumatoid Arthritis in 2015.
What is Sjögren's syndrome? It's a systemic Disease similar to lupus and it comonly accompanies other rheumatic diseases such as lupus or rheumatoid arthritis. It is known to cause dry eyes but it affects much more than that. Arthritis, tendonitis, muscle pain, kidney disease, vision problems, seizures, lung problems... I would like to raise more awareness about this.
Is lupus fatal/life threatening? It can be. It depends on a lot of things. The treatment, taking care of ourselves, keeping appointments, getting regular check ups, eating right. And also, how far the disease had progressed. Other than my connective tissues, my lupus has attacked my brain and kidneys. But I take my treatment plan very seriously and do as my doctor orders. This used to be as deadly as HIV when it was first discovered.. Giving patients 5 years to live. But Most people live a very long time these days thanks to prednisone and other medications.
Has prednisone made me gain a lot of weight? No, but it had helped me stop losing so much and helped me maintain a better appetite. If you are on anti-rheumatic drugs, like I, you may have trouble keeping things down and getting hungry. Prednisone may help you eat more. If you are concerned about gaining weight, a little self control with food will go a long way. It doesn't just make you gain weight out of thin air, it makes you hungry and giving Into the hunger is what makes people put on the weight. Prednisone may also may you retain fluids but after the dose is titrated down you may see these symptoms subside.
What made you seek a diagnosis?
I ended up in the hospital with swelling to my kidney and spleen one too many times. They thought I had Mononucleosis and strep. When tests came back negative, my new doctor and I were going over my history and she said it sounded like lupus and then sure enough, it was.
Has it been hard to be a nurse with lupus? It's had its fair share of ups and downs. I literally have to push myself sometimes. But if you ever need a nurse who understands daily pain and chronic illness, and has true empathy, and won't give up on getting you better, I'm your girl.. I know all about that :P
Has lupus affected your relationship at all? It's had its moments. I have had seizures and embarrassing things happen that I wish my bf didn't have to see.. But the fact that he's still by my side is what really matters. If you want to be in a relationship you have to accept the limitations of the illness. Sometimes you can't stay out all night. Sometimes you get sick on important dates. And people are going to lose sleep and worry about you when you're in the hospital. But as long as you have someone supportive and you are a support to them, it's do-able, and it can be amazing <333
What's the difference between lupus and fibromyalgia. Although a lot of people with lupus also have fibro caused by the lupus, they are two different things. Not everyone with fibro has lupus. Fibro, to my understanding, is a chronic pain disorder caused by the miscommunication and misfiring of pain neurons, and pain receptors. I believe it may be more neuro-related. Lupus also causes chronic pain but it is autoimmune. The pain is due to the destruction of healthy joints and tissues because the immune system goes crazy and attacks ones own body and healthy cells. (Auto=self). So basically somewhere down the line my immune system was like "I'm confused" ... And then my body attacked itself, causing chronic inflammation and pain. Sad story. *tear*
Are neuro manifestations common with lupus? Common enough to be in the diagnostic criteria for it, but other symptoms previously mentioned are more common.
This is why they call this disease "the great imitator" because it can attack anything, anywhere in the body, and be
Mistaken for so many other things.
Has this disease made your life unmanageable at any point?
Yes at times I could not work. There were times my classmate in nursing school had to rush me to the ER. I get scared. But I still manage. It's just not super easy all the time.
Well that's it for now guys :) Its been real!!