Tinu - Empress of Twerk
Posting an update from my GFM that goes into a nightmare happening to cancer patients across the country.
Photos are me at chemo today.
“I have tried to write this update so many times.
In life the one thing I can usually count on are the words. Writing is who I am and how I breathe, more than anything else.
But I am not myself. It feels like my Self is stolen.“
(Continues as thread)
Tinu - Empress of Twerk
Either you have to be able to pull yourself together enough to be an inspirational story of triumph
- so not happening for me -
or you have to be constantly presenting the hard-working, do-gooder, hopefully palatable side of you that adds value to the world and is thus, worth saving.
Because I am not one of the people who can simply say to the world "I am drowning, please save me. Please do not let me die."
Believe me I have tried.
Tinu - Empress of Twerk
And the pain of knowing that so many of us cannot simply say
“I am a human in need, and I'm not conventionally beautiful, and I'm not who society says is of use, and I'm not a fictional border wall, and I'm not privileged, but please help me anyway?”
And still not get enough help?
And then be harassed and abused for needing that help every literally every single day of the week that ends in a Y?
It really does a number on you.
Tinu - Empress of Twerk
In a few short weeks I have gone from the devastating news that I need four more infusions in my IV cocktail, from my oncologists, after months of thinking this Monday was my last time in the Oncology chair?
To being told that the insurance company will not pay for the life saving treatment, and the immune treatment I need to repair how the facility not protecting me has damaged my system.
I just don't have it in me to try to fundraise an amount more than double the amount I'm already short.
Tinu - Empress of Twerk
I'm very lucky to have had your help and I still owe twice what I have raised.
Our family went from barely making the mortgage when IV chemo was added to the oral chemo cocktail in April to being perpetually 30 days behind, in order to cover the gap between what our combined salaries can cover and the part of our costs that can't be paid late.
Everything else goes to keeping me alive. And I'm still $7k in credit card debt.
Tinu - Empress of Twerk
After discounts and negotiations I still need $140k for medical expenses and bills.
And now this. I'm being treated by the insurance company like my life is literally not worth the cost of saving. My appeals have failed.
The hospital system that runs the Oncology center has bad policies about protecting patients that have made me sicker and ruined my life.
Tinu - Empress of Twerk
Unless all the cancer patients figure out how to band together and do a massive class action suit I have no legal recourse that I have the energy for- nor can I take the time or energy to do anything but work myself into an early grave at this point.
Crowdfunding at this level has become harder work than I can do to generate the money I need by myself. It's not just writing people to ask for help.
Tinu - Empress of Twerk
Especially after a life of being the fixer and the provider.
About a week after this news, my picture appeared in a follow up to an article ABC news did about me and a few other people with compromised immune systems who still cannot go back to our previous lives because exposure to COVID infection can kill us.
Tinu - Empress of Twerk
I had just been through that last dip in my health that I described in my prior update. So there was no way I could offer a quote but my peer and friend who was also in the previous article
got my name and photo in it.
You’d think people would look at all the major press coverage I get in these publications, from Al-Jazeera to the Washington Post, verifying that I have cancer, long covid and other conditions, to be validation of the work that I do, not to mention the illness I experience.
Tinu - Empress of Twerk
Instead, in recent days, it has intensified the abuse and online harassment I have experienced to the extent that it has even more greatly impacted my ability to work, and deepened my profound sadness.
I don't know what happens next.
I'm in a lot of physical pain, more than I have been in a long time. I have no choice but to take in as much work as I can though I've been ordered by my oncologist and hematologist, who also provide my only long covid care, not to work.
Tinu - Empress of Twerk
And these same doctors and their staff are now a threat to my health.
I don't know how I can expect to live the ten years that was the original promise of the IV chemo without completing the additional courses necessitated by their extreme neglect in protecting me every month.
And to my dismay, this is happening to cancer patients all over America. We used to be the disabled population people pretended to care about, now that we know every one of us who lives long enough is affected by it.
Tinu - Empress of Twerk
And all I know now is. I'm so embarrassed to have to ask you for this amount of help again this soon after thinking there was a light at the end of the tunnel for me.
But I don't see how else I live through this? I am very tired and I'm honestly not looking forward to continuing to be alive in this state, but my family needs me.
Tinu - Empress of Twerk
I'm so frustrated and angry that I can't do this on my own. But I do still need whatever help you can offer me without hurting yourself in the process.
Even if all you can do the simple act of sharing my story with a friend who could spare a few dollars.
Everything helps at this point.
Tinu - Empress of Twerk
Previous update.
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