Life Isn’t Fair

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I’m getting hit in the brain by deep, dark , ominous pain

it has infiltrated my body and is breaking me to the core

so much so that earlier I fell to the floor with pain and agony

who knows what this slew of medications is doing to me

I hope at Johns Hopkins they don’t do to me what I suspect will happen it’d be cruelty!

 

I really don’t want anymore chemotherapy

I mean just look at what it did to me the last time I took it for weeks and weeks

Not one but several types of this chemotherapy

Might I mention the one they call cytoxan destroyed me

I just hope to recover my body and make it healthy once again for my own sake!

 

I am even  considering busting for my cluster headaches

I am simply waiting for my work up at Johns Hopkins so I know it is safe

To the rest of you folks that means using drugs,

not recreationally but as therapy for my own sake

To keep me away from daily pain that causes suicide to be a real thought for me

Not once, twice, or three times a week, but every damn day with this chronic disease

I also have the constant migraines simply bothering me my pain tolerance is so high

Migraines no longer inhibit my thoughts like they used to when it was the worst pain i’d got

Now I have a terminal illness, neuropathy, gastroparesis, and asthma too

It’s a wonder I’m not dead though they tell me it’s coming boohoo

It’s nothing to cry about as all I can do is advocate and show my love for other sufferers too

I sure hope science will advance because I’d pay anything to be healthy again!

 

You might wonder since I talk about neuropathy so little why I don’t talk about it much

my answer to you is because it’s not my biggest issue

my main concerns are headache disorders and a potential cure to my vasculitis

or at least something to put it in remission before I’m dead

I try to keep those thoughts out of my head

this is my form of letting you know

that I’ve maintained my sanity for one more day of this horror show

my outlook on life right now is dismal at best

it won’t be til April that I’m likely to hang out with my cluster family

Ans see all my chronic migraine buddies advocating with their caregivers and children in DC!

 

That being said I’d like to end on a psoitive not regardless of what I’ve been going through

At this moment there is no excuse for being upset I have many new friends

Family I should say my cluster buster family is growing every day

I just don’t understand why the migraine community isn’t as close like physically visiting eachother and hanging outof course, I just wish we could all be that happy

As I am when I am hanging out with any of my cluster headache family

I have to thank Bob Wold for making it possible for me

To be a part of such a terrific community.

 

To be honest even my vasculitis groups aren’t this close

but that’s because we’re spread so far and thin with our rare disease

Churg Strauss Syndrome is terminal but a Cluster can be just as serious  indeed

I just wish I had more time to breathe“ than the doctor have given me currently

Because if I had that I’d spend my entire life pursuing advocacy!

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