|This is what $150 every 3 weeks will by you in medication.|
Kineret is also my cure for GVHD of the eye, which can damage
the cornea and lead to blindness.
I always dreamed of becoming a powerful advocate/writer/expert, someone who through the ages will be remembered as playing a pivotal role in altering the course of history for the better. Think Florence Nightingale, Mya Angelou, Oprah Winfrey, the writer of the Feminine Mystique, MLK, any and all the creators of social movements and new cultural thought processes.
If I were to be remembered in this way, I would have accomplished my lifetime goal of leaving the world better when I left it than when I came in. My life would be complete.
Of course, if I were "remembered" this way I wouldn't know whether I led a successful life or not. I wouldn't be around to see the results.
I have ideas about how to meet the aforementioned goal, Pillars to prove my successes, Dreams and images of testifying before congress and the senate, Meeting with the president to highlight the plight of insured patients, Hosting rallies telling my story and the stories of others that can't tell themselves.
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Full Catalog to come.
These are all milestones I hoped to reach in accomplishing my ultimate goal of making the world better for the future.
I've come close, but ultimately, I was not selected to testify before the senate on behalf of the ACS.
I'm so disappointed. I'm crushed.
They've "found a different patient," which is a polite way of saying, "You're not right for us."
My medical marijauna use is too scandalous. I'm SO frustrated. I waited YEARS to comment publicly on my stance and just as long to experiment with the new medications available only to write about the experience the day before my testimony and have me disqualified as a spokesperson.
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But of course, truth be told, I was all ready feeling like I needed to edit myself. I finally started creating my very own cartoons and hadn't posted them yet. Now I won't hesitate.
Okay, maybe I will because the server isn't cooperating.
You'd never heard of these goals, these dreams, because I have never said them before. They've been kept secret.
Like so many others, I've kept my wildest hopes and dreams hidden for fear of failure.
You can't fail at dreams you don't acknowledge, But what fun is it to dream if you can't tell anybody because you fear failure? It takes the fun out of imagining your wildest dreams.
At what point does this happen, that dreams become secrets due to fear of failure? Childhood is full of all sorts of dreams. I'd say up through college.
I know when I stopped talking about my dreams. I stopped when I realized my cancer may not be curable.
I still have more dreams.
|My daily oral morning medications. This does not include|
"As needed" meds, PM meds, shots, or drops. We spend $150
minimum monthly in med co-pays.
I dream of being a successful, pulitzer prize winning investigative journalist with a best seller on The New York Times list.
It could happen.
I dream of people loving my artistic creations and starting my own store called "Uber-local" or some other catchy vogue name. I'd create an artist co-op where we all pay for our space and share duties. It'd have refurnished/antique furniture, local goods such as food, art, hand maid furniture, vintage clothing or redesigned, all laid out like a second hand IKEA.
I'd be a mini-mogul by now. I'd be a nurse practitioner with a share in my private practice. I'd own investment properties.
But instead, I'm 28 and still thinking up ways to hustle income to keep my family comfortable.
At 18, I was in the fast lane towards the american dream.
Ten years later my american dream is threatened daily, and I've moved on from dreaming of opening my own health clinic as a nurse practitioner to selling jewelry and begging for donations (hint, hint).
Our income appears sufficient but our expenses are outragious.
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How many years will I have to spend the entirety of both my and my son's social security on health care?
I feel like I've been treading water forever. I feel like I've been hanging on by my nails, gritting my teeth, just trying to keep myself together.
I need a break. I don't know how much more I can take without one.
Talk about cabin fever, and I was run off the road by a kamikaze state plow taking up half my side of the road.
Thank goodness for my Dad and Brother who pulled me out with their winch.