View Full Version : New to the site and newly diagnosed.

11-17-2007, 08:13 PM
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]

11-18-2007, 06:07 AM
Harley, what a story you have! I had to laugh out loud at "Holy Censor Batman!" every time you wrote it. ...Maybe because it is a phrase I use - slightly modified. "Holy Guacamole Batman!" is usually how it comes out for me in "polite" company....

Y'know, when I developed that stinkin' rash, I thought ti was the lupus. Turned out to be a nasty flare of rosacea... I'm now super religious about my hats (4" brim, minimum) and sunscreen. Summer and winter. It has helped not only the rosacea, but my lupus has stayed much quieter now that I avoid the sun. It makes a difference.

I'm so glad you've found a doc who listened and who's finally believing you. It is good to finally have a label, isnt it? Now you can move forward with some direction, and understanding of how to best help yourself stay healthy as possible.

Welcome to this board, Harley, you're among friends and support....

11-18-2007, 08:48 AM
Hi Harley :lol:
Welcome to our family. Your story is so familiar to almost all of us. Once we received our diagnosis, we all pretty much realized that we had been suffering with Lupus and its symptoms for years and years and attributed the many symptoms to other things - had doctors tell us that we were depressed and that the symptoms were all in our heads - had friends and family tell us that we were not as sick as we said we were etc. etc. etc.
What you did was a very intelligent thing - to list your symptoms, take pictures of your rash, research and compare, and then go to your doctor armed with information and ready to fight! I say "Bravo" to you for that!
We all, also, understand that quandary of being happy to finally have a diagnosis and at the same time, being frightened and upset at knowing that we now have a chronic systemic disease! It's like a catch 22 isn't it?
Once you are told what type of Lupus you have, you will probably have questions. We are here to help you by answering those questions as best as we can, giving you support, comfort when you need it, and by providing a place for you to just vent and/or share your feelings.
I am happy that you found us and that you decided to join our family here!
You Are Not Alone!

Peace and Blessings

01-09-2008, 03:16 AM
I just want to thank u guys for making me feel welcome and for the encouraging words. It's comforting to me to not feel like I am all alone in what I am going thru. To also update u guys, my rheumy diagnosed me with SLE, Fibromyalgia, Reynauds and Sjogrens. Paaaaaaarrrty! lol Im being light hearted about it or else id lose my ever lovin mind. But anyways, thank u guys once again for the support, lawd knows we ALL need it.. :D

01-09-2008, 11:52 AM
Isn't it strange how you are excited to have answers, but obviously upset at the diagnosis? I'm like that too, as most of us are, and no one really gets it except us (and my hubby...I think he is relieved too!).

Welcome, and hope you find a treatment that gets you feeling better!

01-09-2008, 03:02 PM
Welcome - your story was def. interesting you seem like a funny gal...with the batman comments and all. I have been fighting for a diagnosis for around a year- after researching as you have to lab. findings, symtoms, treatments, and such - i've pushed it on different doctors and finally got to see a rheumy last Thursday- she believes me- and after seeing pictures i took of my facial rash and others she ran tons of lab work for me and I find on the 24th what her dx is...besides Antiphospholipid Syndrome which I recently found out my OB doc dx me with after 3 miscarriages (but which he never told me) The only reason I knew is b/c my PCM on base ran tests for that and decided thats what it was after reading my charts from the OB and saw that he had already dx-ed me with this. So I understand your battle with the docs fully- as does almost everyone on this site I'm sure. This site is one of the best things I have fumbled across in helping with my dx- I ask tons of questions maybe a little annoying from time to time - BUT great with helping me on doctors appts. SO ONCE again as I quit babbling on now- welcome!