The images below are of my former liver, the damage of thirty years of Viral Hepatitis C (HCV).
The images are graphic, so please be warned now, they are unlike anything I have ever posted before.
These images are of me and as such I am the original owner and retain the rights to circulate the images as I see fit. If you would like to borrow the imagery, please ask.
In honor of National Donate Life month, This is why i needed a transplant liver.
This was my liver's limit.
This is what a healthy liver should ideally look like:
The last week of September always seems to be a rough time in my life. Whether it's the end of a serious relationship, the catastrophic failing of treatment or simply my consistent return to a decompensated state, the time never seems to be so grand.
As a cirrhotic liver patient, a low sodium diet is routine and a relatively high protein diet helps me rebuild the muscle loss due to my decompensated state.
When the liver gets to a certain point, it stops giving a shit about this and demands more sodium. I started to notice a desire for salty foods unlike ever before but I really thought little of it. My body even began rejecting higher levels of protein, either by making it feel unappealing or forcing me to eject it from my system.
With all the other changes going on at the time it was hard to dissociate it with some kind of change in my system. As I had been moving living situations, my body began to get more and more tired. Eventually after a week of moving boxes and unboxing things it became crunch time in retrieving and wrapping up the old apartment. Unfortunately three days before we were supposed to vacate I had spent more time being exhausted than being of much use. Wednesday 9/28 was the last straw, halfway through the day I was brought over to my parent's house as I could hardly stand. There I was watched carefully as I began to grow more and more tired still. On Thursday morning I briefly felt better but as the day would go I began to get lethargic and my ability to stand was compromised due to balance issues. I went to urgent care as I had a terrible experience with the ER a month ago. After waiting for near an hour for some kind of answer from the attending physician my father and I left for the ER as they alone could quickly handle the situation. Traffic that night caused us to wait further but thankfully during our waiting my GI called me and she helped prep the ER for my arrival.
The pain became excruciating, I was in tears. My mother, who worked nearby, was able to help walk me through the check in process. With my doctor having prepped my entry and my visibly decaying jaundice, the pain alongside made the proceeding moments hazy to recall. As they began to gather the necessary information as to what was happening with me they began my IV. An intern introducing herself as such asked if I would be okay with her attempt at the IV. As my veins are like highways it's hard to miss, but it does happen. As it would this time, the second spot they chose was less desirable and the needle stick was also painful. The pain medication would ease this issue over the course of the next few days.
As they moved me to my room they tested the blood they'd drawn to get a better picture as to what was going on. As the night would go, the pain would come and go but my tiredness remained. My mother stayed with me the first night to assist with minor things as nurses and their aides were slow to respond during the evenings. The second night my friend stayed with me, it was unexpected, and he was extremely helpful and helped make my stay easier. By that Saturday we had come to find the culprits of My extreme exhaustion and pain. My sodium was dangerously low, my calcium was as well, and my ammonia was very high.
When sodium gets too low it can cause seizures and exhaustion, if it gets too low it could kill me.
My calcium being low only added to those elements, and ammonia being so high puts me at risk for serious brain damage and a potential coma.
The interesting phenomenon is that I do not seem to display the typical flapping that occurs with the hands of patients with Hepatic Encephalopathy.
They continued my liquid restriction(1200mls) to help prevent me from losing more salt. It was arguably one of the harder things to deal with as everything made me thirsty. On Sunday night I had delayed my pain meds to return a phone call.
The result of the call and reaction left me stressed out and upset, the next day I was taken more seriously and the nurses and aides almost began to know me as I'd been there so long.
I am on the liver transplant list, and due to my presently high bilirubin my MELD score puts me near the top. Often I am second or third in line and as an alternative I am contacted for the potential transplant.
I got a call at 10:49pm from transplant
I explained to transplant that I was presently in the hospital, they said they'd need to speak with a nurse
and hear my charts over the phone or faxed, so I asked my nurse "to come here now to assist transplant for me so that they can determine if I'm in the condition to transfer over."
and explained that I need her now. 'immediately as this is a time sensitive matter'
(Normally a nurse leaves a direct line for me to contact them, she however did not feel the need to do so. Telling me she didn't have a phone.)
In the mean time I was talking with transplant about my options and when speaking with them I told them how slow the nurses/CNAs had been the last few times I've asked for anything they said to have me call them back when my nurse arrives.
At 10:51pm I had asked for any available nurse.
At 11:10pm I again explained the urgency of the situation and explained it once more
At 11:15pm a CNA came in and I explained the situation AGAIN, and said get me my nurse now.
At 11:19pm she moseys in.
I explain the situation to her, her response first was that of disbelief "transplant is calling so late at night?"
So I told her: yes, that is correct, called them back and handed her the phone
She read off the numbers to them and then passed me back over
And they explained that they'd need to transfer me hospitals now.
*Meanwhile my nurse wanders out*
Engrossed in the conversation I explained that they should begin the transplant procedures and I would contact my parents to make the decision.
As I am not in the emotional or psychological state to make this choice.
As I notice my nurse's absence, I message over that I need my nurse to begin transfer procedures
And the lady on the end of the call button messages me, "okay why don't you wait to tell her yourself"
So I tell her NO.THIS IS THEIR NUMBER. HAVE MY NURSE CALL THEM.
The Nurse or CNA on the call button begrudgingly wrote the number down.
I contacted my parents, and after about 15 min of deliberation both say no.
So I call transplant and cancel the request then call my nurse over the button
And explain we no longer need to go through with it. As it turns out this was unnecessary as She hadn't even started faxing over the paperwork. And then, and I asked for ice, explaining my last pink cup (500mls) she instead decided that I only have 300 mls left for the day instead of 500, refusing to get my last cup and reducing it based on her whimsy. I asked for my pain medication, and just cried from the entire experience. It's a tough call to take, and a horrid realization that as a transplant patient not only does someone need to die for me to have one, another person could die as a result of my taking that liver over them. It's something that goes through my head every time I get this call.
I took down notes using my call log as a time log to note who I talked to/when.
When I explained the situation to the nurses the next day, they took me seriously as I thumbed through the notes I'd taken that night. My nurses indicated to me that my nurse from the previous night did in fact have a direct line.
These facts made me feel like my nurse from the previous night didn't trust me and didn't take me seriously. So when every nurse I spoke with afterward showed a modicum of respect I was extremely thankful. Several nurses and doctors came in to help build a better system for dealing with transplant patients and took my criticisms to heart, from those conversations on I got along very well with most my nurses, as I normally do.
I was switched over to a normal diet with less protein. So my diet went from 1000mgs salt with 100g protein to 2000mgs salt with 60gs protein, in a 3,500 calorie diet.
Too much protein builds up ammonia, which causes hepatic encephalopathy in those with decompensated livers.
The sensitivity and pain remained, and as magnesium was fed into my IV, it burned so much that I required pain meds before and after it. My body's electrolytes were being forcibly rebalanced, and overall I had begun to feel better.
I could walk around and I began with small walks on my own around my room, eventually expanding my walking across the floor, to laps around the floor itself. Picking up saltines along the way. My docs worked with me to assesses how to manage the pain when I left the hospital and he suggested Tramadol. Reluctantly I began taking this new pain med.
It took a few hours to release me from the hospital, but in that time I put in an order for delicious ramen soup from a local ramen house, as I needed to maintain my new sodium levels.
I drew a happy Halloween Nightmare Before Christmas message on my board as I left. With the IV out of my arm, I could see the full extent of the hematoma.
During all of this; my friends stepped up and took care of every last bit of the move. They made time in their busy schedules to stop by and stay with me for good lengths of time, all the while helping me when I was unable. To say that I am grateful for them is hardly enough, this experience has made me appreciate them that much more.
I'd noticed many friends reach out to me via social media, even the date that I had to reschedule checked up on me. Although this was not my first rodeo, I've never felt so failed by my own body, and by my nurses. I've learned a lot of depressing things at each hospital visit I've had but this one was by far the most stressful and emotionally challenging.
Life is not easy, but in moments of need, those who are close to you, can make you feel more humble and grateful than you'd ever thought possible.
Yesterday was my fourth blood test, in the last month. My bilirubin and INR have been at a levels worry some enough to postpone treatment. (The cost of a treatment is more than the meds alone, this month I spent over $350 out-of-pocket costs and that's with insurance!)
With the help of my family and advocates I was able to negotiate better terms on the price I can bear. But all of this is contingent on my having my present insurance and that I'd ordered and received it before I switch insurance September first.
In one day I switch insurance plans, the present Gilead plan offers mysupportpath to be used twice. This is my third Gilead treatment, so it's hard trying to lobby for support.
While I'm pushing to get the hold/stop order from my doc removed, I'm also moving. (Which when you have health concerns requires certain things.)
If the stop order isn't removed I will have to go through the hoops I just went through before getting access to treatment. It's about time. That's what I'm losing. I'm at a point where each week that my liver continues to degrade I get worse off. The weeks I lose waiting for treatment aren't just the time now, it's less time later.
To savor every day that I have, that is all i can do.
I've spent more time in my life, waiting and seeing, than much else. Over the years since I was eighteen, I've spent a little less than two years of my life on a treatment for Hep C.
I had been looking at Zepatier as a potential treatment, and had devised a method by which I would be able to take it. However Epclusa was approved by the FDA days afterward, so we moved forward with that. I am presently awaiting the Epclusa Treatment. While I've managed to get it approved I happened upon yet another snag.
My liver blood panels weren't looking too good. My bilirubin had shot up to nine, and now rests around six while my INR has gone down to 1.9 (for reference, and INR of: .9-1.2 is average, while a bilirubin level of .3-1.9 is average.)
Until my liver function starts to improve, I am again waiting. In the mean time an MRI and another blood test hopefully will show progress enough to begin treatment.
Overall the treatments have taught me the power of resilience, humility, and patience.
As I see it, I've waited my memorable life for a cure, what's a few more weeks?
To those awaiting treatment, sometimes all your efforts may seem in vain. Dig deep, just a speck of hope, let it grow by holding the hands that help you. Know that you are not alone, that others can be your champion when you lack the strength. We may at times come across a canyon too great, but together we can build a bridge.
In celebration and recognition of Hepatitis awareness month, I made an Art.
One of the most difficult parts of dealing with the daily challenges of hepatitis is the stigma. It is empathy which lends us better perspective, so I chose to celebrate the phrase "Walking a mile in someone else's shoes."
The shoes are worn and weathered by all who've dawned them. The finish highlights the brittle weaknesses of the shoes, feeding the imagery of the near broken appearance. But thanks to its new exterior, the shoes are water tight and stable once more. Reminding me that perspective is just as powerful a force for the one sharing their shoes as it is for the one receiving.
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.
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.
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.
(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.)
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.
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.
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
..
.
..
.
.
.
.
. send this to 10 people in 10 seconds or your wish will never come true
. .. .
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.
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.
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.
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.
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.
This will probably be my most personal blog to date.
I have been lost in exploration lately. Rather, I should say I wander, not simply that I am lost.
This blog has been an unforeseen gift to me, allowing me to look back at my thoughts years ago, and understand where I've come from. To better understand my mistakes, and to live better than I have. I have learned to strengthen the bonds near me, and now I should seek the same connection with others. I value every bond I share, and if I am to truly know myself I must share more personal moments with friends.
If I have not extended a hand to you yet, I implore you to seek me out. Because I appreciate you as a friend and I want to experience something you truly love with you. A place or thing that represents who you are, your happy place, if you will.
In the same spirit, I have a few weeks remaining on my Disneyland pass, (basically the 15th of December), and I want to share my happy place with you. So that I may know and experience my favorite place with you. I realize I may never go again after this. There are a lot of factors involved with this reality, the price increase is part of it, but there is another hurdle.
For the last 4 years, I have had a steadily rising cumulative probably of death. To say I'm beating the odds isn't entirely true, I'm simply very fortunate. As I presently stand, without any treatment my probability of death reaches about 94% by this time next year.
Including the odds of a successful treatment my outlook improves dramatically. Even if the treatment fails it could extend my gambling habit for another two years, as previous treatments have extended my stay. There's a lot I cannot account for but with the odds I can see, there is about a 9% chance that I become terminally ill this next year and will not make it past 2017. It is something I have taken months to really accept, but I have to learn to let go, and accept what I cannot change. I would rather focus on the hope of success, but I cannot ignore the parts I dislike, I must understand them, and accept them.
On another incredibly personal subject, I am a Deistic Religious Scientist. And the last few months have affected me deeply on a spiritual level. I don't talk about my faith, mostly because there isn't a lot to talk about. Religion has always fascinated me, the tenants, mysteries and what amounts to articles of faith. My faith compels me to understand all forms of belief, and to understand my friends through their faith. It's an aspect of my faith I regrettably stopped paying attention to after my first treatment.
I will also take a small bit of time to explain my faith, so that you may know me better. Most people do not know of either aspect of my faith, since they are incredibly obscure and I so rarely talk about them.
In essence it is a "belief" in a unity of all things through God. That God is within everything and everything is God's will. Good is infinite and an inherent quality that can be understood and accomplished with prayer, meditation, and/or acceptance. There is a universal harmony, a balance, that every moment is complete and perfect within itself and the law of cause and effect is always in motion. That immortality is achieved through our very existence, because life moves in perpetuity. I believe in the mystic concept of a Cosmic Christ, not a person, rather a universal presence, an image of God present in all creation. That it is a God-like consciousness that was and is present in all Prophets and enlightened people who use this in a positive evolution of society, mankind and/or personally.
As a Deist, I find the form of religious science to be my truth. I am compelled to understand the bonds of faith that exist within my friends, so that I may better understand them and my own faith.
As a Deist, I find validity and wonder within all forms of faith. Because the core understanding within Deism is simply a belief in God, the personal relationship of a religion is up to the Deist as an individual.
It is ever present in my life, I don't usually talk about it because I'm actually always talking about it. It is my way of life. I do not invoke the name of God when it's implied so frequently. As a gesture of gratitude to my faith, the symbol of my will bears resemblance to the symbol of Religious Science.
Left: Symbol of unity from Religious Science. Right: V of Acceptance and Struggle: HCVME
HCVME is the manifestation of my will to become more than I am, to better connect with others and to be open about my challenges so that I may better understand theirs. So that through the power of empathy and perspective we can overcome the social hurdles that face Invisible Disabilities.
The name HC<ME (HCVME) is also intended to evoke the iconic HE>i, which is a shorthand for John 3:30 "He must become greater and greater. I must become less and less." But instead flipping the idea on its head implying 1 John 5:4 "Because everyone who is born from God conquers the universe; and this is the victory that conquers the universe - our faith."
If you are a new friend, or someone I've yet to meet Email me: Canythingbutaverage@gmail.com
And of course, if you need to talk to someone about Hepatitis C(HCV) and you're not sure where to turn I'll do everything I can to help.
Recent events in my life have done something amazing and in common theme with my life are presently bittersweet.
The realization was due to some heavy introspection...
I was deeply depressed after Sovaldi/Olysio failed, but I didn't realize how long that depression would last.
After I left the hospital in September 2014, I was a shell of myself, trying desperately to figure out my life. And while I found motivation to keep moving forward, persistence though pain is not the same as living. Daily tasks become hard-fought and over the months I found myself unable to do more than a task at a time. I was scattered and constantly procrastinating.
The remedies to revive me, didn't work as they had in the past, and until the Harvoni treatment was guaranteed I was degrading into a recluse.
But the reason I couldn't pick up my bootstraps is something even further back. When I left the school district, I lost that part of my identity. I put my focus into treatment entirely, and slowly dropped most of the things I loved to do. I had decided that my only goal was to be cured.
I had put all of my emotional energy into being cured, leaving little for myself and others. Which was a terrible decision.
While I would grow closer to my friends through the roller-coaster of life, I put everything including myself away. As my treatment began, I found support from from friends and especially my girlfriend at the time. She is inspirational to me, and I became the advocate I am today in large part because of her. After the first zero I was elated, this was the first time I had this success. My goal was accomplished! So I started to get involved even more with advocacy, my team raising thousands of dollars over the years now. I wanted to transition from working with kids, to working with technology and kids, and began to look at the idea of graduate schools. I became even closer with friends and family.
But in September of 2014, it hit the wall. I had foolishly used my illness as an excuse to myself not to push myself further. I'd never truly resolved the questions in my mind, the despair that came with the wind getting knocked out of me from the failure of Sovaldi. My mind, and the spaces I would inhabit would become cluttered, slowly.
I found simple tasks daunting. I would rarely move throughout the day. My room, everywhere I lived was symbolic of my state of mind. Tasks were harder, not only because of my mental barriers, but because things were literally hard to find. The idea of walking to I became lethargic and gained a lot of weight. I felt like every day would be my last, which isn't as magical as it sounds, because the implication to myself was that i would rather die than be responsible for my actions. The medications I would constantly balance wouldn't help my state of mind, paranoid and confused I had degraded to my lowest point.
After a long phone call, my heart sunk. I realized how pathetic I'd been, how fearful, how absurd the methods of my madness had become. I couldn't live like this anymore. Shattered, I finally understood how I'd been sabotaging myself.
All the things I'd wanted to do over the past year, suddenly seemed possible. The idea of leaving the house wasn't frightening and tiring. I reorganized my priorities, and began to de-clutter.
I use memory anchors to compensate for my slowly degrading memory and brain fog. It's an embodied object for your mind. Every memory is attached using different senses... it's like when you smell something familiar and it reminds you of something. Certain types of cigarette smoke remind me of when my grandmother would smoke on the patio and convince five year old me to get in some kind of trouble to drive my dad crazy.
As I de-cluttered, memories came flooding back. I had covered my anchored objects in a room filled with trivial trash and dirty clothes. My windows were dark to keep out the light, because while on treatment my photo-sensitivity went up, but I would continue to use it as an excuse to keep the room dark. The bamboo, Devil's Ivy and Peace Lilies, slowly began to die. I opened up my room to light, and as I type here now, instead of a dark brown curtain, I see palm trees, and a cloudy sky. I have regained a level of focus and excitement I haven't known for years.
Having my eyes just recently opened, I see so much more, and will see more to come. The worry, the fear I had is gone. I can actually say, that I'm no longer depressed. I have a treatment coming up in January, but it's no longer the focal point of my life. So now, as the great Ben Franklin did, I wake up and I ask myself "What good shall I do today?"
