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Month: September 2014

Living la vida lupus

Living la vida lupus

I don’t know how to say this so I am going to say this as if I am just talking to a group of my friends. Okay?

So many of you have followed me through this journey of trying to discover why I have been suffering for years with chronic daily (as in every single damn day of my life) headaches and migraines. Back in April  of 2014, I was hospitalized for 9 days while they ran tests and tried to get the pain under control. I started to find relief around day six. (Wouldn’t you know it?)

While I was in the hospital they ran many, many tests. Some of those test results came back not so very encouraging.  My focus was on finding relief from my headache pain and that was basically all I cared about. I finally found an amazing new neurologist with a new game plan to kick these headaches back to hell where they came from. Long story short, my new neuro was going over my test results and called me to go over other, non-headache realated symptoms. She then sent me straight to my former rheumatologist who them put 2 +2+ 6 +7  together and came up with Lupus.

A couple of weeks ago I was diagnosed with Lupus.

I hate that sentence. I really, really hate that sentence.

A couple of weeks ago I was diagnosed with Lupus.

I can’t even cry about it. I want to. I want to rage. I want to break things and scream. And cry. But the urge is stronger to just lie on the floor and just be. Just lie there until the whole damn world makes sense again. Or I can make sense of it. I don’t do any of that. What does that even mean? I’m pretty sure it means I’m in massive denial. Or I’ve finally snapped.

Right now we don’t know what the connection is between the daily headaches/migraines and the lupus. I’m sure we’ll be digging that up and trying to connect the dots now. All I really know is that I am in pain. I hurt. I mean, I really hurt. Every day. And, yeah, I’ll say it: This sucks. I’ve also heard that lupus doesn’t travel alone but likes to bring along other autoimmune friends. I know they see inflamation in my thyroid, so let’s hope that is the only friend invited to this party.

I don’t know what else to say.

Apparently (according to the doctor and even if I am in denial) I have Lupus.

I am scared.

I am mad.

I am still so very, very much in denial.

I am in pain.

I am lonely.

I am alone.

I am angry.

I am tired.

Did I mention…. I am so scared.

And we’re back to me not knowing what to say.

Oh, I have one more:

#suckitlupus

jls-sle