Where Do I Go From Here?



It’s midnight and all I hear is beeping of machines

sometimes it’s maddening, at others frightening, and sometime just annoying

especially if it;s your own IV alarm because even on low they’d wake an entire city up

from these my mind is properly ready to implode!

It’s late and I’m waiting on my meds to finish before I sleep and am awoken

for five AM blood tests and a scheduled CT with contrast I wait

to see what happens and seals my fate.

At this point i’m at a loss my future a dark void

til I enter it ill never come to peace

I hope I get transferred to another hospital at least

that way we can get third opinions before we go to the NIH

it seems to me the Hospital for Special Services Vasculitis unit is the place for me.

However if they won’t transfer me for whatever reason I know my mother the RN

can take care of me for a while within reason, this friday I have an appointment with

Dr Harry Spiera and I sure hope he finally has some damn answers for us after all this waiting!

I’m so fed up of not knowing my fate the NIH, Johns Hopkins, Mass General

or somewhere else with a specialty vasculitis unity because this temporary treatment just ain’t cuttin it. Not knowing what state i’ll be in next week isnt even the beginning of the problem just a big part that bugs me and irks me that I may dislocate my family for a while.

I feel like i’m dying I have a sense of urgency about me that make me wonder if i’m losing myself slowly. I’m a health advocate for sure but even we tread unknown waters sometime with no information to go on. Well very little to say the least vasculitis itself is a sort of rare disease.

I can’t even have anyone near me sneeze or else ill end up crying in pain from another disease.

I’m just so sick of living like an animal being treated like a drug seeker and living in pain.

I feel like Michael has gone there’s so little of him left what I have of him wells up in my chest and I our it on to paper like water into a vase seamlessly without trouble and without cause

I don’t know how i’m even writing this the room is pitch black and my eyes too sensitive to look at the screen so its tilted down, all I can hope for is that you’ve enjoyed my short rant and that all of you have a fine morning, god bless.


10 thoughts on “Where Do I Go From Here?

  1. This is the first time I have read your blog. So sorry for your frustration. I can tell you that I believe that people that are not “normal” present a true challenge to the medical community. Don’t give up in your mind. You need that sharp mind to share your story. Engage people to understand the medical battle you live. Hold tight, hang on. Many have been on the medical rollercoaster ride. We survived!!!! So can you.

  2. I hope you get some answers soon regarding your next step. Your situation is very frustrating, and like you’ve said, you don’t have unlimited time for them to figure shit out!

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