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
What is Sjögren's syndrome? It's a systemic Disease similar to lupus and it cmonly 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 chemo, 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.
What made you seek a diagnosis?
I ended up in the hospital with swelling and acute renal failure one too many times. 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 each time I go to work. I have gotten injured around my joints. The fatigue is not fun either. 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 dat :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 nuerons, 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 "you know what?! Screw you kerry!" ... 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. There is something called lupus psychosis. I started
Having seizures and
Losing touch with reality a few times before I was
Diagnosed, which had
Gotten better with treatment for lupus. But before I was diagnosed with lupus they had
Misdiagnosed me with neuro and psych disorders. I was home alone and my eyes started playin tricks on me.. Which lead
To me screaming and crying, which lead to me
Calling the police cause I thought I wasn't alone.. Which lead to a psych consult and me thinking I went crazy lol.
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 driving because I'm afraid I'm gonna get sick in the car or black out. I get scared and anxious when I think of how this diseases made
Me go nuts. But I still manage. It's just not super easy all the time (but who's life really is easy? Lol)
Do you plan to have children? I would like to have my own but I am also fine with adoption if I can't.
Well that's it for now guys :) Its been real!!