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I have an autoimmune disease that points more towards Lupus. My symptoms started as headaches. When the headaches turned to migraines with aura my family told me that I was seeking attention. Include the "I also have headaches they aren't that bad." Slowly I progressed into what I am now. Describing it is really hard for me as its not exact. My Great grandma had Lupus. My mothers mom died young so we have no accurate medical history on her. My dads side has Rheumatoid Arthritis. When the doctor first told me its possibly Lupus or RA (Since ruled out) I called family. I was completely distraught. I was always told that Lupus caused my G. Grandma complete misery and crippled her. I had no idea the feats they've made since her diagnosis or the entire history behind her. I thought my hopes and dreams were gone. My families response hit my like a ton of bricks.
"Shut the fuck up and quit making things up its not Lupus. Quit going to the doctor. Nothings wrong with you."
But my entire body is on fire. Everything hurts.
"It's in your head get over it."

I went to the Rheumatologist who keeps testing. Which they don't understand the process of diagnosis.

Then I got pregnant with #2. They found the SS-B antibody that could cross placenta barrier. The criticism continued until I finally had enough and asked what medical school they attended to make my diagnosis. My child could end up with a heart block. I'm seeing a cardiologist myself for heart palps combined with labored breathing. My family though, they still see me as a hypochondriac. How could it possibly be Lupus even though all the test results point towards it and I have the symptoms. We're mostly not talking due to my "smart mouth" when they have something to say about my life. Including, encouraging me to drop out of school, my health, and my parenting.

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6 years ago