Diagnosis by sheer accident07/16/2008 04:07:42
My diagnosis of Lupus, was by accident , I truly beleive. After 3-4 years of having vague symptoms of malaise, fever, joint pain , etc. at a routine office visit with medical dr. - I had a POSITIVE ANA ...... finally after all this time and being told "we know you have something , we just can't find it". I was then referred to a rheumatologist and it was confirmed SLE. Then came the real "letdown". We finally know what exactly you have - however all we have for treatment options is a 40 year old medication "Plaquenill" and for flares we'll zap you with steroids.
Often when someone becomes aware I have Lupus - the general reaction is 'Yeah, I've heard of that , what is it?". During the diagnosis I was also in the process of adoption of my first grandchild. So we can say "STRESS" was pretty high , hence the Lupus was in full swing. I think my biggest fear then was "oh no, what if the Social worker denies the adoption due to my health?". Praise the Lord, I'm a proud mom of now 5 year old Lisyana. She is the light of our home and truly keeps me going on the days I do not feel like it. When I am confined to bedrest, she comes often to give a kiss and hug and say "feel better mommy". She also knows the SUN does not like mommy and the importance for all of us to wear Sunscreen. So we live with Lupus , just as we live with anything else in life. One day at a time.
At age 27, I developed an autoimmune thyroiditis, hashmotios thyroiditis, this in turn lead to the diagnosis of Fibromyalgia, triggered by the thyroid disease. At age 29 - I suffered an aneurysm, had emergency brain surgery. Everything seemed to level out until age 33, during nursing school , I suffered a seizure. The diagnosis : Epilepsy as from scar tissue in the brain from surgery at age 29. The medications for Epilepsy did not like my body as I had neutropenia, fatigue, and many other side effects. Looking back I ask myself was it really reactions to medications OR the begining of LUPUS. Yes, as most folks know it takes several dr.s & usually several years for a true diagnosis. You must keep searching, keep seeing the dr. because sooner or later a doctor will come across something - however minute a detail to say "hey heres a red flag , lets explore this further. My advise to anyone seeking , searching for answers for health - keep a diary, seek a health care provider whom you can truly talk with & cares & LISTENS to you. My dr. has often cried with me, hugged me and most importantly listened with her heart as well as her educated mind.
Yes, I may have a diagnosis of more than one thing, I may have Lupus , but LUPUS does not have me. I'm LIVING With Lupus - age 44 : married 6 children , 3 grandchildren and one more grandchild on the way. I work full time , currently, and I'm able to be out / off when my body needs rest, I have a loving , caring husband, & support system which allows me the strength to face life with Lupus.
The discussion forum is currently unavailable to post new discussions or comments. Please check back soon.