ANA positive for Lupus

Hi new friend! Welcome to the special club called: Messed Up Immune System Club!!

This club has a terrible terrible entrance fee because you have to have: hair loss, muscle pain, joint pain, overwhelming fatigue that people who have never experienced it literally do not understand, weird nerve things- insert weird nerve symptoms here: everything from loss of sensation to tingling to burning sensations, what other grab-bag of terrible symptoms am I missing? You name the part of your body inside or out, and your immune system could be, without any warning, intermittently giving you symptoms. Toes randomly turning purple or having purple spots on them in totally warm weather for no reason? Check!

Is all this freaking you out? Yes, me too! I have also freaked out. Am I less freaked out 5 years in. Uhhhhhhhhhhhh, for the most part, yeah. I had made my peace with not ever having a “real” diagnosis- because there is a condition called “undifferentiated connective tissue disease” where you have symptoms like lupus, scleroderma, Sjögren’s disease with a positive ANA… but…. You just aren’t quite sick enough for your specialist(s) to say that you have one of those named diseases. About a third of people go on to develop into having lupus or Sjögren’s disease, etc. within about 5 years or so. And about 65% end up staying in the undifferentiated category (it even has a diagnosis code to use).

I hung out there for about 2.5 years (after trying to ignore my positive ANA for the first two years until I felt so crappy I couldn’t anymore). And then I started getting some skin rashes and a biopsy showed that the rash was for reals lupus. That threw me for a loop again- because you know what?? It’s really mentally hard to come to terms with being sick. Even after thinking I had already done that over the past couple years! Did this “diagnosis” really, actually change anything? No, not really. It gave it a new name, but the actual amount of uncertainty about the future was always the same. Because isn’t that what we’re all really worried about- not knowing what tomorrow will be like?

You have an autoimmune condition- it doesn’t have a name yet. I hereby give you permission to name it whatever you like at this time because it might take a few years until you know exactly what you might be dealing with. I hope that your immune system begins to calm- absolutely avoid UV exposure at all costs! The sun is my mortal enemy. I don’t think I’m allowed to post my personal name for my disease here due to the level of curse words in it… hmm. Let me try with blocking it out- my personal name for my combination of too much inflammation and jacked up immune system and chronic migraines is called: Heinous F@&kery Most Foul.