My fight started October, 2011. I always had this mystery rash develop and at times it would get severe. I also had a lot of joint pain. I would ache all over all the time. I knew something was wrong and not right so I went to my family doctor. She said it must be something I’m allergic to that was making my face do this. I was placed on high dosages of Predisone. Several different times this had occurred, so I was sent to a dermatologist. She then started testing right away. I had a biopsy done on my face and it came up positive for cutaneous lupus. My whole world just flashed before my eyes. I was in a state of shock. But everyone was like ‘Well, that’s not bad’.
I continued to get sicker and more joint and leg pain occurred more frequently. Some blood work came back not good, so then I got referred to a rheumatologist. More testing was followed, To make a long story short, I had a lot of testing done and was diagnosed with systemic lupus erythematosus in May 2012. I am now on 5 different medications that are to be taken 4 times a day, My RA doctor will be adding a few more medications within 2 months. I hate lupus. I am in bed 3 or 4 days out of the week because I hurt so bad. My hair is falling out and I had to cut it extremely short due to 2 bald spots. I’m not allowed to enjoy the outdoors while the sun is out shining beautiful because my skin is so sensitive to the sunlight. Also, that is what makes my hair fall out more. If I do go outside, it has to be for a short period of time. I usually just use an umbrella.
This is all so hard on me. I have a 15 year old son that is very active and we used to play everyday outdoors. Now some of that had to decrease due to so much pain I go through. I’m saddened that my 15 year old and my husband of 10 years have to watch me go through this and worry constantly. Some systemic lupus patients don’t show very many symptoms right away, but mine is very active and the doctors said mine just exploded all at once. I’m praying daily that all these medications start doing their job so I can get on with my life.
Systemic lupus will slow you down. Not a lot of people know about systemic lupus or any other type of lupus. We all need to be aware of what it is and symptoms of it. To learn more you can go to www.Lupus.org
I do fight like a girl with systemic lupus, and I send my prayers to each and everyone reading my story that suffers from this evil disease. We will get through this!!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.