I signed up for this site this past summer but never posted anything because at the time my diagnosis wasn't confirmed and I just wanted to read what people were saying to mentally prepare myself for what I had a feeling was coming. Now that the lupus diagnosis is in, I feel like I can officially become a part of this community and post my "hello"!
Like I said, I knew this was coming because I knew it wasn't normal for a 25 year old (now 27) to have a fever every single day, be too tired or sore to do anything and have the memory of a 90 year old but I'm still struggling with the diagnosis. I got my first face rash a few weeks ago and my scalp is starting to get sores which scares me the most. I have dreadlocks and find myself looking into the mirror every morning saying "Ok lupus, you want to take my body? Fine. You want to take my mind? Alright. You want to take my face? Ok. But let me tell you, if you take my dreads we are going to have a real problem on our hands!" I find pointless threats and twisted humor are my coping mechanism. haha
Anyways, I'm a full-time artist which I've found to be both a blessing and curse. Being self employed allows me to set my own hours and rest when I need to. However, the pressure of running your own business makes it hard to allow yourself those times of rest. These last few months my business has been suffering because of all the lupus fun.
I guess that's all for now! I'm just really thankful that a place like this exists because all of my friends have backed off like I'll die if they even look at me and my family is either pretending the diagnosis isn't there or are convinced its just Lyme disease.
Looking forward to having a place to voice any future frustrations I may have and learn from other peoples journeys with this disease.