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Hi Vee!:wave:
Thank you so much for your insight. I've tried to get soomeone to refer me to a rheumy, but no one will. My daughter's day care owner and her daughter both have lupus. We've known them for about 7 years now and she told my mom I should be tested. So that's where I got the idea of this could be what's wrong. I've done a little homework on it. I'm not photosensitive unless I have a rash. I don't get the classic butterfly rash, it's just everywhere when it decides to show it's ugly self. It's hard finding docs around here that will take my insuance.
No docs I've seen will listen to me. I know it must be overwhelming to have a patient come in and present with all of these symptoms, but they just give up instead of trying. The easiest thing for them to do is blow the person off and believe they're faking it all.
She told me blood clots in the urine were common...I'm not so sure. I wouldn't think it's common in something they look at as simple. They were large, and it freaked me out. I've had some pretty sever infections but nothing that resulted in that. It hurts all the time in the same way it hurts when I have a kidney infection or stone, but sometimes there's nothing there to support a reason for the pain.
I have trouble focusing my vision sometimes. Pain in my ears pretty often. Small, swollen, sore lymph nodes in my groin and under arm areas. The amount of hair that comes out when I shower and brush it is disgusting. I get sudden, sharp pain in my theighs like it's deep in the bone. After my stay in ICU, it took me more than two weeks to be able to walk or stand for any length of time. It took more than a month to feel close to normal, but I know what I feel is normal for me is not normal for everyone else. When I try to run m feet cramp up really bad, right in the middle. Sometimes I have trouble swallowing, they say it may be ann ulcer...I get this clenching pain in my stomach and it shoots straight up into the back of my throat, sometimes it makes me vomit. I see my GI doc Friday...I forsee another endoscopy.
It seems like it's something new all the time, something else to add to the list.
I dont know how to get a doctors attention. I don't know what to do or where to go. How do you convince a doc you're not crazy...and they need to do more? The last time I had a bad skin episode it came with abdominal pain. Pain so bad I told my mom that we needed to hurry up and find an answer because all I could think about was how much I wanted to die just to make it stop.

Thank you so much for listening and hving concern. It means so very much to me. Please feel free to ask anything and say whatever you feel. Thank you.


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