New to the site and newly diagnosed.
Hello everyone! My name is Harley and I have recently finally been diagnosed with Lupus after experiencing symptoms for over 10 years. For years I was visiting physicians back and forth and kept telling them that something is wrong with me. Very few of them would acutally listen to me. I have been tested for damn near everything under the sun and misdiagnosed on several occasions. I had become so frustrated and lost all faith in the medical profession as a whole. I felt that the doctors were being condescending, doubtful, arrogant, they made me feel as though is was all in my head and it was just my depression and blah blah frickin blah! I fought and fought and fought until I just gave up from frustration. Now let me take yall back a bit... About 8-9 years ago when I was still living in New York, I was on the subway and saw an advertisement for a lupus medication. I stood there reading it thinking damn, I have alot of those symptoms. I said to myself naaaaah, I dont have anything as severe as that, you're just overreacting. I never gave lupus much thought after that. Fast forward to 2004. I was watching cycle 2 of Americas Next Top Model and there was a cute, bubbly young model on there named, Mercedes Scelba-Shorte. During the season she revealed that she has lupus. She described what it was and how it made her feel and again I thought DAMN! That sounds so much like how I feel on almost a daily basis. Again, I didn't give a helluva lot of thought to after that. (meanwhile Im constantly going to doctors being tested for this and that and everything under the with the EXCEPTION OF LUPUS)
Again, fast forward to about 3 weeks ago... Top Model cycle 2 re-runs are on MTV and I'm watching it while getting ready for work. My youngest sister is down here in Virginia living with me and she is in the livingroom watching it as well. So I leave, come to work, get here and I'm like dang, I left my money home! I call my sister and tell her to please bring my money to my job. Im outside talking to her for a moment and she goes, "Hey, don't think Im crazy or anything but, I think you have Lupus." So I stopped for a sec and I say, "What makes you think that or what brought you to that conclusion?" She says that she can remember when my hair would fall out and I was always tired even back when she was younger (she's 21 now and Im 31) and some other factors. So thats when I said ok, the stars are lining up here lord, I'm getting ready to go in this doctors office and fight now because dammit, YALL ARE GOING TO TELL ME WHAT THE HELL IS WRONG WITH ME!! So, I begin to research, via the web, lupus. It's syptoms, causes, treatments, types and etc. The one tell tale sign is the facial rash, I have been getting this ugly rash on my face every time the weather changes from hot to cold for the last 12 years. I just attributed it to my being fair skinned and having sensitive skin and the weather affecting it. WHY DID I NEVER GO TO THE DOCTOR WITH THE RASH ACTIVELY ON MY FACE?? I'd grab my blue star oinment honey and clear that thing up within a day or two. The rash is the tell tale sign and I never knew it. I attributed my constant hair loss to maybe chemicals im using in my hair, not eating right or stress ( I stress out alot), never really giving thought to the lupus theory over the years. Well honey, I printed pictures of the rash and wrote down a list of syptoms that I've experienced over the years. I mean I went alllll the way back to when I believe I experienced my first set of symptoms. Printed off information and went into the doctors office armed and ready honey! This time I wound up speaking to one of my PCP's associates. I explained to her the situation (and how little faith I have in doctors period) and gave her all of my information, research and photos and you know what? She looked at my medical chart and saw that eveytime I had come in, I always have a low grade fever...ALWAYS. She saw that I had been in complaining of joint pain, fatigue, hair loss, rashy skin and other things..she said "YOU HAVE JUST MADE MY JOB SO EASY THIS MORNING!" Then joked as to whether I would be going to Med school because I had pretty much diagnosed my self, now the thing was to find out exactly what Type of lupus it is (more than likey SLE) and check for damage to my kidneys, lungs, liver and heart (I have hypertension) and decide on a course of treatment. I can not tell you how elated and at the same time TERRIFIED I was/am. I'm currently waiting for tests to come back so we can talk about courses of treatment (I'd much prefer to try wholistic treatment and supplements rather than steroids and such) and what damage, if any, has been caused by this disease and my having been misdiagnosed with this or that over the years. *sigh* Finally an answer...finally a damn answer as to why I always feel like absolute CRAP! Now I can focus on getting well and keep the flares at bay through diet, treatment and lifestyle change. Whew! Thank u guys for letting me talk ur head off with the long ass post..lol God bless us all! [/b]