It’s so hard to breathe
Why can’t I get some restful sleep
I’m a workaholic doing it all for free
I don’t even get so much as a thank you
Sometimes it makes me angry but life ain’t fair
That’s why sometimes I get depressed and I swear
I mean shit, I’m in so much pain & despair I shaved off all my hair
My body is so sensitive & I have painful rashes & stitches everywhere!
It just seems like Pain Management didn’t at all care
They told me to live with the pain and weakness so I stopped listening
Who cares what they say I can see the blood from my rashes glistening
I am not stopping pain medication based on a two minute consult
A 3 week “deal with it” program treatment plan? That is a true insult!
I’d have rather have not seen them than have salt poured into my wounds
Emotional sores so infected by these doctors words that they burn
Perhaps I need to write a book on how to talk to patients this is absurd
I don’t know how some of these doctors made it to the Mayo Clinic
It seems with the intelligence level here I could match some of their experience
They actively study these rashes, I actually get them
They study the pain I actually have it for life
They study the inflammation, just look at my hands and all my joints
Fingers like sausages that’s not how they should look that’s my point
I live these diseases I’ve yet to meet a rheumatologist with vasculitis
This really pisses me off because nobody truly understands us
That’s why I need to finish my book so people don’t mistreat invisible illness!
I am dying and nobody knows why
So fuck it might as well go home & be with the people I love til I die
I thought this was the best clinic for vasculitis in the U.S.
But even this collaborative care has been an enormous mess
I want to fix this healthcare system, it’s gross and misguided
All about profit with people’s lives on the line, just like mine
But to do so I need to get some strength
This clinic has failed me at extreme length
All I want is to walk and write
To advocate for others as I have and to do things right throughout my life
This is my world, my legacy, helping out others I’d die without advocacy
I’ll continue raising awareness until I cannot speak, my arms are too weak, or I die
Why I cannot find proper help…I do not know why
This poem is sad I know but don’t cry it’s ok i’ll finally be out of pain when I die.
Please take the time to consider donating to the Migraine Research Foundation just click here any amount helps even $10 that’s less than the cost of a cheap t-shirt and you’re advocating for research my friends do something benevolent today! Click the red link on the menu at the top left of the page to get a secure link to donate it’s safe to put your credit card information in there. Thank you for reading and if you cannot donate please share this poetry or at least this section asking for donations migraine research and research for all headache disorders is severely underfunded because the 36 million sufferers do not band together instead we have a lot of NPO’s that claim to do something but do nothing for research nor do they advocate on any meaningful level, that’s why I choose to donate only to the AHDA, AHMA, the Cluster busters, and of course the Migraine Research Foundation. Why these and not others? I have met the people who run these organizations and their goal isn’t money or to be on TV it’s research to find a proper treatment and perhaps someday a cure for this agonizing pain that over 36 million Americans suffer from.