The text read “Hey what stage is your lupus?” I stared at it for you few, my heart pounding, mind racing. Fearing my mom had gotten confused that I had some form of cancer. I stared at it for a good 5 minutes wonder how I should answer it, also not really knowing for sure if they stage Lupus nor being at my computer or in a position to really research it at that moment as I was running errands I shot back “I have to talk to my doc before I know more” I did a quick search at this point and couldn’t find any information on the staging of lupus.
She then texted back: ‘Mom (my grandma) found some info in an old family circle mag on lupus and aps’ I responded with and apprehensive “Really?? Ohh Wow. Interesting. Well I can answer what questions she/you have as best as I can.:)”
to which I got: “We were wondering what stage and she asked if you had a rash and I told her yes, you had a butterfly rash.”
So I explained that to my understanding they don’t really stage it like cancer any more but I would find out more at my follow-up appointment in 3 weeks.
That is when she texted me “Okay they may not this is a 2005 Magazine!”
Yea a lot has changed since then. So my grandmother reads old magazines and this is what it took to get her to start asking questions about my conditions.I know this shouldn’t have upset me the way it did, but I the next spent the two hours crying. It got a line of communication open and that is a good thing, but it struck a chord. Not once had she called me and asked me how I am feeling, not once had she asked me questions about my illnesses. I have seen her a handful of times since I started getting ‘sick’ and it has been painful to sit there in silence. I know she loves me. I know that without a shadow of doubt.
It just hurts to be the ‘thing’ people are afraid to talk about, or afraid to ask about or however you want to say it.She’s never been good at the close, emotional, too personal type of conversations.
But if it’s in an old magazine though…it is safe to talk about. She will always talk about things she reads in old magazines.