Is the Titanic technically an icebreaker?

Before online dating, ice breakers were relatively impersonal. Online dating has given us the benefit of the profile. The idea that we know a little bit about the person before actually engaging conversation.

In late February I decided to openly display my HCV status on my dating profile.

Before doing so I took to Reddit for some critiques. Unsurprisingly the voices of strangers echoed the voices of my friends in the leeriness of posting that I have Hep C.

I am still petrified that they might be right.

At first I was surprised to see my interactions double, likes increased. I assumed it was in response to my honesty about my status.

In the messages or in conversation, it was easy to see when they read/understood that I have HCV. The tone changed, questions changed, and I became more of a curio than a person.

This doesn't always happen, but when it does it's nauseating. HCV listing did not affect my ability to get new numbers. It did lead to longer interactions and more time before the initial first date though. My profile will only be up for a few more months as the dating process is (emotionally at the least) exhausting. Listing my status means I tell every person I date regardless of how far it goes, and that's a lot of elevator speeches about HCV.

To those of you without HCV or similar Invisible Disability (ID) stigma, it is rare to see the reaction like this. To wear ID stigma so openly when you don't need to... doesn't  generally happen.

I came across critics who's response to my posting of my HCV status, was "duh, What did you expect?" Or advising against listing it as a whole.

HCV is kinda odd in this experience. In many ways it shares the same intimacy fears that HIV can have. But HCV's side effects don't really kick into gear until sometimes decades after infection.

One of the reasons I'm doing this is because I want my generation to know how prevalent this disease is.

I want people with Hep C to know they're not alone.

I want it to be uncomfortable, that's how we change and grow.
And to know that after two months of listing my status, my response rates haven't changed... makes me smile a lil bit.

Numbers and Birds for scale:
To give you a better picture of just how frequently I mean, in a collective 4 years (in between relationships from 22-30) I've gone on around 200 first dates, and around 40 second-fifth dates.
Normally within a month period (between all apps) 4-5 new numbers.

The thing is, I use the app differently because I'm not looking for NSA or casual sex and I'm not looking to settle down. I'm looking to meet new people, if we click like we should then that typically translates to friendship. Every so often there's some passionate romantic blur, and something bigger.

There is something beautiful in finite experiences.

Breaking the ice with HCV isn't all that advisable unless you're very comfortable with yourself and your knowledge of it. Icebergs can still sink a ship.

Provocative Statements

Pamela Anderson and Kim Kardashian.

NSFW?

It doesn't matter what good they may do, their most provocative activism comes via their own power as sex symbols. The reason for this is that their names are so associated with sex that it's impossible to claim that it isn't a factor in how they promote a product, service, make a political or artistic statement.

Both Pam and Kim recently revealed nude photos in solidarity with the community they represent.
Kim chose International Women's Day, while Pam chose Hepatitis C.

(selfies and Kim Kardashian's essay located at end)

Kim Kardashian has the ability to hit on a public nerve in a very real way, she must be provocative for her brand to keep growing.

I do not make the assumption that the person she presents is the person that she is.
It's a work face, it's just that her product/brand is Kim Kardashian.

Kim knew that posting the picture would create a public conversation, she was fully willing to step forward by doing the same thing so many other people do with a selfie.

She released an essay to elaborate further along with more photos. The essay's irony in the first  paragraphs doesn't frame the articulated argument she was intending. She fails to see that our assumed prejudices pervert our beliefs until we shift our perspective. 


The depth and measure of art is not in its existence, but in the response to its existence.
And the selfie is so art right now.

Thankfully, the gasps from of those with higher moral fiber were met with the clash of the stances within feminism. Giving more exposure on all sides...All the while still promoting Kim Kardashian.

(Seeing all the reactions to Kim Kardashian's tweet, got me curious about the psychology behind it, and unfortunately there are presently only two studies, one American (men only) and another Polish(all adults) on the selfie, and they focus on subject rather than the audience reception.)

Compare the response to another sex symbol who released a nude on Instagram(IG) in November.

Pam Anderson released the nude on IG in November  to predominately positive responses.
Both women captioned their respective photos, and every aspect of the art in the photo is undoubtedly their signature style.

Wait...a second....IG doesn't allow nudes.  

Pam used it as an opportunity to remark about  how unaffordable the treatment is for the majority of those affected by Hep C.

Pam immediately set the tone of her message and her announcement took fresh advantage from the fall's political rally against pharmaceutical price gouging.

Both used their artistic license to carve a talking point on a diverse problem allowing more mainstream exposure.

Advocates and activists used the exposure to highlight key arguments within their respective communities.

Fantastic commentaries ,
Critical receptions,
Mainstream exposure,
and advocacy 

Oh, and me...shit...she's effective.

Since this is art, measuring the reaction within the community is the measure of the art's success.
The difference in reaction is telling. Both communities have had major escalating upsets and changes in the last few years on a global scale, and both suffer from a lack of unification. Both are also shaped by their diverse composition and intersectionality.

The critiques and responses above exemplify how willing we are to accept nudity as an artistic statement. Not only in their points but in one distinct choice. Whether or not to re-share the image.

For all groups the rationale to use/not use the image is based on readership reception.

After all.... why am I not showcasing both images right now? Because it's unprofessional.

Scroll down, I put them at the bottom so you can still browse this shit at work.

What this reception shows is that sexualized marketing is acceptable when the subject isn't the artist.
The artist chose a provocative photo to declare a statement, and to remove that provocative photo from the statement and use another photo is sexual objectification. Because at that point the statement she made is devalued by filtering it but still profiting from it.... Nah, I'm sure it's just professionalism.
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make a wish
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send this to 10 people in 10 seconds or your wish will never come true

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Please
Forgive my unprofessionalism 

Pam Anderson

Kim Kardashian

Kim Kardashian's Essay

Hey, guys. I wanted to write a post elaborating on my tweets last night. In all seriousness, I never understand why people get so bothered by what other people choose to do with their lives.

I don’t do drugs, I hardly drink, I’ve never committed a crime — and yet I’m a bad role model for being proud of my body?

It always seems to come back around to my sex tape. Yes, a sex tape that was made 13 years ago. 13 YEARS AGO. Literally that lonnng ago. And people still want to talk about it?!?!

I lived through the embarrassment and fear, and decided to say who cares, do better, move on. I shouldn’t have to constantly be on the defense, listing off my accomplishments just to prove that I am more than something that happened 13 years ago.

Let’s move on, already. I have.

I am empowered by my body. I am empowered by my sexuality. I am empowered by feeling comfortable in my skin. I am empowered by showing the world my flaws and not being afraid of what anyone is going to say about me. And I hope that through this platform I have been given, I can encourage the same empowerment for girls and women all over the world.

I am empowered by my husband, who is so accepting and supportive and who has given me a newfound confidence in myself. He allows me to be me and loves me unconditionally.

I feel so lucky to have grown up surrounded by strong, driven, independent women. The life lessons I’ve learned from my sisters, my mother and my grandmother, I will pass along to my daughter. I want her to be proud of who she is. I want her to be comfortable in her body. I don’t want her to grow up in a world where she is made to feel less-than for embracing everything it means to be a woman.

It’s 2016. The body-shaming and slut-shaming — it’s like, enough is enough. I will not live my life dictated by the issues you have with my sexuality. You be you and let me be me.

I am a mother. I am a wife, a sister, a daughter, an entrepreneur and I am allowed to be sexy.

#happyinternationalwomensday'

Some Things Considered

I am an outlier,

But I am happy.

Treatment to cure is every person with Hep C's goal. When things get closer to the end it can consume us to find the keys to the locked exit doors. Even in my early 20s I gave up hope when Int/Riba failed, I grasped at straws and took the treatment again with a higher dosage.

That grasping, failing, created my first RAV, I had a q80k polymorphism. Failing a treatment is not simply continuing to have HCV but it also bears the risk of creating mutations, RAVs. 

So after failing Int/Rib/Incivek, Sovaldi/Olysio, Harvoni... I now have three mutations, RAVs.

I am an outlier, but one or two RAVs is common among experienced patients.

Zepatier, the drug i've been waiting for had a contradiction I was worried about. While previously I was unsure my Child-Pugh score; I confirmed that it is only A. Which means it shouldn't be as hard to get access to the meds.
Daklinza/Sovaldi/Olysio/Riba is another contender.

(to make things even more complicated, the existence of RAVs from a previous treatment does not indicate that the treatment will or will not necessarily fail)

Well....fuck.  There isn't enough longitudinal data for my situation on these meds to make the best decision. Why? Because breakthrough medications often lack the studies their non-breakthrough partners have at date of FDA approval.  Breakthrough therapies are not about the results, they're about maximizing the amount of time the patent is most profitable.

Zepatier will undoubtedly change the conversation about Hep C meds due to its lower price point and high efficacy in smaller groups as well as across Genotype 1 and 4.  I fear that this low price point will drive a "consumer's" choice in treatment. 

(Insurance agencies, Healthcare groups and Pharma companies make the real choice between medications before you even see em... which means 1/3 of the people deciding  give a shit about the patient. Fucking Trident has more support from leading dentists.) 

There are many combinations of Hep C meds for many different cases, each one with different efficacies. (Sovaldi ranges from 84-96% depending on subtype.)

The best drug/therapy to treat should be set by relative efficacy, not by price.

That being said, my condition is stable, I don't seem to be getting worse, nor am I getting better. If I keep up the healthy changes I've been making I may be able to stay where I am for a few years yet.

The key now is choosing the best treatment, which means waiting for more data. Thankfully the EASL (aka the International Liver Conference) is coming up next month, so we should have more information in the coming months.

In the meantime later this month I'll be making a trip to Portland and Seattle. Making stops in San Francisco, and Sacramento.

If you're along the route, ping me! 

I Heart DP

Oh shit, look that's me in there.

There may be spoilers. Head's up.

JK there are totally spoilers. Deadpool Deadpool Deadpool!

Is he here? Wait sorry, wrong fictional, fourth wall breaking character.

I wouldn't normally talk about a movie, but this super...hero(?) is important.

His name is Wade Wilson Aka Deadpool. For those of you not familiar with the story, he's a dirty mercenary with a heart of silver or a metal similar to gold. He's an antihero.

He is known for narrating his own story and breaking the fourth wall. And his superpower of regeneration is from a treatment to cure his cancer. 

With his voice guiding an audience its easy for them to understand this harsh and brutal universe, but the characters within see him interacting with the audience and believe him to be insane. This detachment from his own universe, is a core component of the insanity brought on by his origin story.

If we were without the narration, we would see the world as he does and the movie is jarring, confusing and violent.

Deadpool is a super "hero" for those of us with Chronic Pain, Mental illness, and Cancer.

Deadpool must endure constant chronic pain, due to his ability constantly fighting his cancer. His weapon x treatment also made him a touch psychotic.

As a person with a terminal illness and chronic pain, I loved being able to relate the tragic experience of diagnosis, the health care challenges, and his humor in the hospital.

From reaction to diagnosis to when Wade argues with Vanessa about priorities and the next step. While she went trough every avenue at her disposal to grasp for straws. His idea of not wanting to bring someone into the "shitshow" hit home in a very real way. The movie helped me see how ridiculous an idea this is, because we all have shit in our lives, we all have hardship at unknown times. We have to regard it as an aspect of our lives rather than as defining our character. Because it's how we react that determines character.  

His sense of humor feels comforting to me because I know that humor. It's a weird self deprecating brink of madness that finds itself in those resilient enough. In a sense it's being jaded by living.

Now on an even more personal level...

The dead pool being a board where members bet against each other to die. The dead pool is a game to deal with the reality of the trauma of life so close to death...

Between a few friends, we call ourselves lifers. We each have diseases that can cause us to die early on, so naturally we're in a life race to see who can die the fastest. There's no betting though. Oh, and no cheating (unless it adds time to the clock). So, When they explained the dead pool, I peed a little in excitement.

The weapon x treatment that Wade went through to become Deadpool felt familiar. Not that level of pain or superpowers, but rather the drugs themselves. The weapon x serum was derived from Wolverine's healing factor and applied to Wade to alter his DNA to combat the cancer.

This is similar to modern DAAs, Genomics is the basis for Sovaldi, Harvoni, Vikera Pak, etc. However, unlike the Weapon X program, the treatment just targets non-structural proteins and like doesn't give you superpowers. So to see a "similar" method was exciting.

I felt like there was an area where they played it safe...

Deadpool also reflects a modern dilemma with healthcare. The movie only touched on the overwhelming amount of options and information available for cancer treatment. To be able to give a patient's view of the process and financial turmoil, would have been so impactful. With a spokesman like Deadpool, the ability to critically poke at it without being too serious is a powerful superhero advocate.


There are plenty of movies that do as good a job or better, but there none of those grossed over a hundred and thirty million on their opening weekend. So...

Watch it. Watch it again, while eating a Chimichanga.

Zepatier Part Ugh

I have spent the better part of this past month re-writing this post, and on March 11, i will find out much more.

Because I legitimately don't know how to properly convey my despair and disappointment and fear at what will soon unfold.

I had been eagerly awaiting the release of Zepatier,  the announcement last month was terribly exciting.

Zepatier is a Hep C drug that deals with NS5A resistance,has a very high success rate, and is almost half the price of the leading treatments Harvoni and Sovaldi.

It's amazing, and it has shown to work very well in other harder to treat cases.


The drug has one small hitch.

Well, i think it kinda sucks like... a lot.

The FDA/Merck released a contraindication for the drug for use with patients who with child pugh score B or C

"ZEPATIER is contraindicated in patients with moderate or severe hepaticimpairment (ChildPugh·B or C) due to the expected significantly increased grazoprevir plasmaconcentration and the increased risk of alanine aminotransferase (ALT)elevations" - 

The contraindication does have a rationale beneath it.

In 1% of cases ALT levels raised 5X within in the first 8 weeks, Clearly, an indicative factor of a problem.

Unless it isn't.

Which it isn't.

Most instances self corrected soon after:

" During clinical trials with ZEPATIER with or without ribavirin, regardless of treatment duration, 1% (12/1599) of subjects experienced elevations of ALT from normal levels to greater than 5 times the ULN, generally at or after treatment week 8 (mean onset time 10 weeks, range 6-12 weeks). These late ALT elevations were typically asymptomatic. Most late ALT elevations resolved with ongoing therapy with ZEPATIER or after completion of therapy [see Warnings and Precautions (5.1)]. The frequency of late ALT elevations was higher in subjects with higher grazoprevir plasma concentrations [see Drug Interactions (7.1) and Clinical Pharmacology (12.3)]. The incidence of late ALT elevations was not affected by treatment duration. Cirrhosis was not a risk factor for late ALT elevations."

In fact the contraindication seems odd considering the big new DAAs carried no such contraindication:
 Sovaldi 
Harvoni 
Daklinza 

Olysio 

"Initial analysis of Zepatier’s label showed comparatively fewer AE(Adverse Effects)s (29 vs 41 for Sovaldi). Liver cirrhosis, the only ImportantMedical Event (IME) listed on the label, is largely associated with HCV and notwith the drug. "

So... Now it's time to figure out how the hell I get this drug, because I suspect this will be my last treatment. success or failure.
Further research should show it's true efficacy, which i feel will reflect poorly on Zepatier if the drug is prioritized because of its price-point rather than it's efficacy.

Edges and Pills

As 2016 began I was excited to be defining my timeline for treatment soon. However, my early morning appointment with the doc turned out to be less exciting. She answered my questions as best she could however the FDA had yet to release that information: Zepatier is still waiting.

In Canada, the drug was recently approved. This by no means necessarily speaks to any superior efficacy, merely different timelines and different standards. (California has three million more citizens than Canada, smaller governments can act faster.)

Normally we would proceed with an off label prescription, however Zepatier is a new drug not a new combo of drugs.

Sometimes with Hep C (HCV) meds combination uses are FDA recommended. If they're not, then it can be harder to get them approved from an insurance company. In 2014 Sovaldi and Olysio were approved separately, however their use to treat HCV as a combination took an additional set of studies which was approved later. I took the combo two months prior to its FDA approval because of the 'off label' option.

In the case of Zepatier it has not been approved and since it is not a combo therapy it cannot be prescribed 'off label'. I can hope for a trial while I wait, but other than that I really have no options yet.

Treatment is part of what I need to do to get healthy. Treatment can cure me but it can't heal me, the exhaustive damage to my liver I've already sustained is enough to very nearly kill me. My liver doesn't have long, maybe a year or two if I'm lucky. So treatment is really only part of what I have to do to survive this.

This is an outline of the major sectors I'll be focusing on as I go through treatment:
Nutrition- Low Sodium, High protein diet with liver friendly foods.
Exercise- 1-2 hours per day 1/2 cardio, tone down existing program: P90X.


P90x is workout regimen for those already in shape. I have spent the last 3 months doing a combination of low impact work-outs and walking (at first only about a mile a day, but now near three months later I average 5 miles per day.) Even though I'm better off than I was a few months ago, doing P90X is no cakewalk. It is an intense as you need it to be, which is why I like it.


Social- Connect deeper with friends by learning more about them.
Emotional- Talk to others about experiences, and complete goals.

As I implement these changes in my life I will be logging my physical and emotional state during treatment.

The doctor's visit was not without good news however, as my MRI results are fine: thankfully no cancer. Most everything else seems to be in good health, which is always relieving to hear.

With no knowledge of when I start treatment, it's going to make dating with Hep C that much more complicated.
Wait, what? Dating? What about health, treatment and focusing on all of that....

Yea, Dating. I'm 29, so it's part of my life and one I shouldn't ignore. I've learned from the emotional stress and depression of my prior treatments.

It's important to keep close the people and things that make us feel alive.

What composes us makes us wonderful but definition is found at the edges, in differences and limitations. Edges are the best place to build, it may require a little more balance but to expand the horizon is something uniquely human.

2016

New years is coming. 

Stay Positive.

Just not HCV positive.

This year I will take my speckled axe and embrace the negative space.

I wish you all a glorious new year.

Hepatitis C you next year.


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