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Kathy's Story

I had been sick since I was 16 years old, grand mal seizures, arthritic type symptoms in my knees and hands, pneumonia, etc. It was passed off as nothing I was just sick.

As I turned to my 20's the migraines started it was passed off by Doctors as "stress related" or "hormone related".Arthritic pain continued.. anti inflammatory were prescribed.

In my 30's more and more ill I became with fatigue, I went from super woman who could do anything to just laying on the sofa and needing to sleep. IBS (irritable bowel syndrome) kicked in, I couldn't venture far from my home, from the toilet in fear "I had to go"

I was tested a few times I was aware of (Many Doctors don't always explain what blood work you are having drawn) but there is one blood test called ANA. If it comes back positive, most likely chances are along with certain symptoms you have Lupus.

I have every old person illness it seems... from arthritis to arteriosclerosis (hardening of my arteries).

At age 42 my main artery in my right leg was clogged, I had an emergency artery stent put in (angioplasty & angiogram done) Within months I had another ANA test done and BINGO it was positive. Low positive, but I felt vindicated, I KNEW something was wrong with me all these years!

That was on August 30, 2002.

Within months I again was rushed back for another Angioplasty, sure enough the first stent failed, I needed another one. My toes were as dark as dark blue could get and ice cold. And also no pulse in my ankle.

Well to this day I have a pulse, but I have Raynauds in my digits (fingers and toes are cold and change every color). As well as Livedo Reticularism Peripheral Arterial Disease, Periphial Neuropathy, etc....

I just wear socks all day to keep them warm, even when it's 100 degrees out here in sunny California. I don't go out in the sun as I don't want a rash on my face, or the symptoms to flare up from being out in the sun.,

I just want to get the word out, there is HOPE, there is HELP, but there is not a cure yet.
Family members do not understand what we go through, but if you find yourself a great support network of friends, "we understand what you are going through!"

If you know of someone who may think they have Lupus, please come visit us. We'll help you with information & friendship, We understand.

Kathy
Owner & founder of http://www.LupusMCTD.com and http://www.MixedConnectiveTissueDisorders.com

Note from the Campaign Director:
Many thanks to Kathy for sending her story all the way from America, it's nice to hear from patients all over the World. If you are living outside the UK and would like to share your story, we'd love to hear from you (and don't forget to send us a photo!!).

May 2010