livingwithlupus

This past week I brought my pain level to the attention to my doctors. I told him my calves and chest were hurting with stitches. He rushed sonograms for my legs and ordered a CT scan of mg lungs and heart to check for blood clots.

That day, I broke down sobbing, almost praying to be taken off the meds and let the blood clots travel where they may.

But I remembered that I’m working my dream job in my dream field. I have a roof over my head. Food in my stomach when I’m hungry (even if it has to be gluten free). I have the cutest 97 pound puppy. My boyfriend, Nick, my love, has stood by me and driven me to almost every appointment.

So I took those pills and swallowed them back. And I did pray. I prayed for them to work so that I could attend my favorite EDM bands concert the next day with my best friend. • The concert was phenomenal by the way, I made it.

If you have the time. I’d like for you to take a moment to listen to “I Lived”- by One Republic. The lyrics mean a lot to me right now.

My lupus poem. I was diagnosed on October 20, 2003 and it’s been a really wild ride since then.

Have I told you the pain Lupus causes?
Have I told you of all of the pauses
I’ve taken out of sheer pain
Just trying my best to regain
Composure
Radiation Over exposure
Being “too dramatic”
Too frantic
But if you only knew of tears held back
Of the agony filled panic attacks
Maybe you’d take a chance to see
From my side the grass doesn’t look so green
What I mean by that is this disease
Can in ways unspoken bring me down to my knees
Begging God to please make it stop
Knowing it never will- feeling your heart drop
My body aches in ways I can’t explain
And it all becomes so ingrained
In your brain
That you’re literally driven insane
Red and purple rashes
Quality of life cashes
Itself out in a panic
You bounce between depression and being manic
And all of this for 17 years
That’s just so far, oh so many tears and fears
Medications
Hesitations
Side effects
What the heck?
Lupus fog
Everything feels wrong
Body screaming
And teaming
Up with itself AGAINST ITS DAMN SELF
The stupidity of this disease’s hell
Ugh
And lord forbid you catch a bug
Because colds turn to pneumonia seemingly overnight
And if you get that you could be out for life
Kidney involvement is what will end you the quickest
Though none of the organs really fare in their resistance
For my body’s will to end itself is strong
Wish my immune system and I got along
But yes, lupus hurts
And yes I know there’s worse
That can happen to someone
But I never saw this disease comin’

It hurts so much.

18 September 2019

I get bitter when I read hashtags like “ #livingwithlupus “

..because I don’t feel like I’m living at all lately.