Hello fellow Lupus sufferers,
I am a 19 year old female and I was diagnosed with systemic lupus erythematosus (SLE) in March of 2011. At that moment, it was affecting my platelet counts causing me to lose a large amount of blood and they put me on prednisone. After urinalysis and other tests, my PCP found I also had kidney involvement because of a large amount of protein in my urine. My nephrologist then put me on mycophenalate mofetil (CellCept). After being on the prednisone for a few months, I began to experience hypertension and high blood sugar. I have since been slowly weened off and am currently taking 10 mg of prednisone everyday. My rheumatologist also prescribed plaquenil for my joints, as I had joint pain before being diagnosed with lupus. Currently, I am taking 500 mg of CellCept twice a day, 10 mg of prednisone, 200 mg of plaquenil twice a day, 5 mg of lisinopril, an iron supplement, calcium supplement, and ProRenal (a multivitamin for those with kidney disease).
A few years back, I had joint pain that would cause me to lose strength in my fingers and wrists. I went to a rheumatologist and had blood work done which indicated a positive ANA result, the doctor said "Well, I can't diagnose you with Lupus until you have met 4 out of the 11 criteria." So I didn't think much of it and figured it was a problem that would go away with time. I was ALWAYS tired and my family and friends just thought I was "lazy", which hurt me but now I understand I shouldn't feel bad because that was part of this terrible illness. My parents and I just let it go and figured I'd be okay. When I had my first real manifestation last February, my platelet count was below 30 (the normal is 130-400), it was causing me to have huge blood clots and prolonged my menstrual period. It was a very scary time in my life but I am thankful for the warning my body was giving me that something was just not quite right. I believe my lupus flare was exacerbated by stress and poor diet.
Since my diagnosis I have been eating healthier and taking my meds when I'm supposed to. Sometimes I wish there was a way I could help my family and friends understand more about what I'm going through but it seems like this kind of thing you can only understand once you go through it. Don't get me wrong, my family has been a great support but I feel like sometimes when I'm just feeling off or a little extra tired, they don't understand how it makes me feel.
Currently, I am enrolled in a nursing program and plan to graduate in August of 2013 with my BSN to become an RN.
I'd love to hear of other stories and would like to make this an area of support for me where I can go to express my frustrations with other people who are going through what I'm going through.
Thank you for reading. :)
P.S. My favorite line I hear when I tell someone about my lupus, "Oh, well you don't look sick."
Hearing that just makes me sick because they think you're only sick when you have physical disabilities or ailments and can't understand that there is so much more to lupus and how much it affects your life.
Okay, I'll get off of my soapbox now. ;)
Bless you all.