Last Friday, I got the official diagnosis. Even though 6 months earlier, I had been diagnosed with Undifferientiated Connective Tissue Disease, this official SLE diagnosis felt like a punch in the stomach. Once I got over the initial shock, I realized how lucky I was to get the diagnosis in only 6 months. Reading all of the threads on this forum, I see so many of you suffering for so long, without ever having true answers!
I have been on 400mg Plaquenil and 50,000 IU of Vitamin D for the last 6 months. For the last 3 months, I have been on 5mg prednisone daily. When I went back to the rheumy Friday, he saw the pictures of my "dead hands" (Raynaud's), and of all my red face rashes, and the major swelling in my hands, wrists, and ankles. Then I heard the words..."At this point, there is no doubt you have Lupus". Wow. So now what. So now, I have to face it. So now, I have to accept it. So now, I have to adjust my life style. So now, I have to listen. Listen to my doctors, listen to my family, listen to my friends, and most of all, listen to my body! No more pretending it will pass. No more pretending nothing is wrong. It has a name. A name made it real. What sense does that make?? Was it not real when I could not walk from the pain in my ankles? Was it not real when I couldn't bend my fingers at all from the swelling? Was it not real when I had such brain fog I couldn't even tell you what the weather was like outside? Was it not real when i coulnd't brush my hair without resting inbetween strokes?
What sense does that make? But now there is a word. A name. Lupus. Something to understand, something to accept, something to "explain".
So today I start Methotrexate. And we pray it doesn't damage my one kidney, as I only have about 30% kidney function as it is.
I've had a week to digest. To read. To think (and thankfully after 6 months of Plaquenil, i CAN think again!).
And I have realized I am truly one of the lucky ones. I didn't have to battle an unkown for years. I didn't have to go to doctor after doctor after doctor for year after year, looking for answers, looking for help, looking to feel better. My battle is here, it is now, and I'm equiped to fight it! Lupus, you will not win.
Methotrexate day today. 10mg pills. Praying it is manageable, and i soon find relief.