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Category Archives: personal
For the last few years I have been very much engulfed in a world of product development, user experience design, and user interface design. I was working with an amazing outfit run by my old friend, Yarone Goren, called Iteration Group. He was quite a mentor to me and showed me how to do what I had done with my own startup, A.Refuge, in a very controlled and professional manner. I’m incredibly grateful for all the knowledge, encouragement, and experience he passed on to me.
After we parted ways I was thrust into a new startup as a co-founder. I discovered I have a great love for developing systems at a high level here. I think I’ve done my best work for that project and it’s been an amazing ride. After three years it is time for me to re-focus my energy into some new projects.
Some of my newly freed up energy is going into my photography in a more dedicated manner than ever before. I’m still contributing to the wonderful hockey magazine that is The Fourth Period and I have just begun contributing as a portrait photographer for my friend’s incredibly inspirational podcast, DrumSmack!. In fact, the next immediate post will be my first shoot done for DrumSmack!
Some fun things of note:
That’s the gist of what’s new and why this site has been rather dormant. Stay tuned for more.
So, the last three weeks of photos and updates were trashed and they didn’t have any back ups except for what you currently see.
Kinda lame. I didn’t really expect to need to do this on my own. But, I suppose that’s just what I’ll be doing from now on.
Sorry if you came here looking for photos of the Kings’ recent home games.
After I update the new games I shoot I will slowly get the games that were lost back up. Unfortunately, the little write ups about the games will not be accompanying the photos. I wouldn’t even know what to write at this point. So, photos only.
I am just observing my life and noting a terrible sequence of events that could not have been more expertly planned by the most evil of villains in a revenge flick. I mean, reflecting on the shit is how you build character.
I just heard back from my doctor about further results regarding me losing my mind. It turns out I have an antibody in my digestive tract that is destroying my intrinsic factor. Without intrinsic factor I can not absorb vitamin B12 by digesting it. This is officially known as Pernicious Anemia.
It turns out that this was a by product of having surgery to remove my insulinoma (tumor on my pancreas) in 2008. It is a little frustrating to think about how much that damn tumor has ruined my life. On two separate occasions, no less.
The body naturally stores up a supply of vitamin B12 during your lifetime so you have some in the case of an emergency. You only get vitamin B12 from eating it. It’s a bacteria that is present in other animals you eat. A person has a reserve that lasts between six months to a year. This is the kicker to me because, after the surgery something happened to cause the Pernicious Anemia. But, I had no idea of it until I was ruining things in my life again and losing my mind again. I went about a year feeling amazing and in control of everything for the first time in years after dealing with the tumor.
I can not stress enough how good things were going for me after recovering for surgery. I was working super hard on my photography, my Chip Knight project, A.Refuge was being built out again, and I was in a wonderful relationship with the greatest girl. I was beginning to feel ok with how bad things got derailed from the tumor and as though I was catching up to where I was supposed to be.
Then, my B12 reserves ran out and I started to lose my mind for the second time and I got to ruin everything again. It is fucked up. For some reason I got to experience everything being right where I wanted it just long enough to feel attached and safe before everything went to shit and once again faded away.
Ugh. I think the worst part about it all is how I wasn’t much better at dealing with it all the second time around. I guess that is where the whole post traumatic stress disorder theory still remains in play. I was able to recognize something was wrong and my mind was rotting away but, I was way too afraid to get help until things got incredibly bad.
Hopefully, I won’t have to deal with a third repeat of this shit. I honestly would rather lose my leg or arm than go through losing my mind again. I would rather deal with being limited in my physical movements and abilities than be unable to simply be me and live by my own code of conduct. That’s how horrible of an experience it is.
The doctor says I need to continue getting a shot once a month of vitamin B12 directly into my blood stream for the rest of my life. Everything is going to be ok though.
After five weeks of treatments I am already feeling a million times better. No more anxiety. No more paranoia. No more crying constantly. Most of the weird physical sensations have subsided (I think I have only gotten the strange numbness twice since the shots). The doctor says everything should be in tip top shape soon enough and stay that way as long as don’t miss a shot.
Hopefully, my timing sorts itself out now that this tumor has all its loose ends cleaned up.
Here’s to the future and putting all this character to use!
Let the rebuild begin. <3
Feel free to donate money in the form of a pledge for my beard or someone else!
Click the Link: Click Here
Funds go towards the LA Kings charity, The Kings Care Foundation.
More on the foundation:
The Los Angeles Kings are proud to be an integral part of the Los Angeles community, both on and off the ice. Kings community outreach is focused on enhancing educational, recreational and health-related programs for the youth of the Los Angeles area. Kings players and members of the Kings family, actively work with local youth organizations and community groups to increase awareness and raise funds to support the Kings community signature initiatives.
The Kings Care Foundation, the Los Angeles Kings award-winning children’s charity provides in-kind and monetary support for the Los Angeles community. Since it’s inception in 1996, the Foundation has contributed over $5 million to local charities supporting youth causes thanks to private donors and fundraising efforts which include the Los Angeles Kings Bud Light Golf Tournament, Kings Camp, Tip-A-King, Game-Night Silent Auctions and In-Arena Messages.
In August 2009, the Kings Care Foundation proudly announced a $500,000 commitment to the Blood Donor Center at Children’s Hospital Los Angeles. The largest donation ever made by the Foundation will serve to increase the much needed collection of life-saving blood for the most seriously ill and injured children at Children’s Hospital through the LA Kings Bloodmobile.
Go Kings Go! Go Charity Go! ^_^
I hang out often on a fun message board called YayHooray. It is frequented by some of the most inspiring and motivating artists I have come across on the internet. It is where I “met” Olly Moss and Reilly Stroope (both are amazing guys and in the early days of aRefuge.com they played a part in making icons and artwork). I am usually bouncing around threads fueling my own ambition by viewing the artwork shared. Every so often though someone shares something else that is in no way tangible like art is.
I just happened across one of those intangibles that is far more powerful and moving than anything “real” can be. A member of the site made a simple post asking for advice for domain names for a website he is helping build for a friend.
The friend is named Crystal and she is looking to document a string of adventures on her new website. The purpose of these adventures is to see how much she can experience over the course of 182 days.
I’m going to paste her words that he shared on the forum for you to read. It will explain what 182 days means to her and help you understand how and why you can do her a wonderful favor with little more than 15 minutes of your time.
From Crystal’s Facebook:
So I have been sitting on some news for a while, trying to digest what’s been going on. So, I am sorry if you have asked how things are going with my health and I have been vaguely optimistic. I don’t want you to feel like I have been dishonest, but in reality when cancer becomes a casual topic it’s hard to drop hard news when talking in passing.
6-12 months with a second round of chemo. The cancer has metastasized in my liver and the results of the last few tests puts me in stage IV ovarian cancer. I also have some immune system malfunctions going on along with kidney damage from the chemotherapy. I feel okay from day to day, although I am suffering from severe anemia which makes me tired from time to time. And to be honest, I’m not really up to discussing the details of this circumstance over and over again. I’m sure you have questions, but it’s emotionally draining to continually talk about the logistics of my health,. I’d honestly rather hear about YOUR problems.
I am planning on doing chemo, and also planning on trying another anti-cancer diet. I’m also going to try and balance that with a whole lot of fun. I’m open to all kinds of suggestions as well, I know some of you have family members who have survived cancer, feel free to put them in touch with me. I’m open.
So there is that. I don’t feel much aside from motivated to live the shit out of my life, even more than I have been. I’m not saying I’m going to get all “live fast, die young” and start putting heroin in my ass and driving off a cliff Thelma and Louise style, but I am really looking at what quality life I have…and the things I want to do. I don’t feel like this is it, yet, and maybe it wont be. I believe in miracles. But this news has changed my mentality in a lot of ways.
That said. I would really appreciate if everyone would write ONE things they would want to do if they have 182 1/2 days left to live. Just one. And as long as it’s not too illegal I am going to try and do it. I have my own, and I will share and document and update as I go along. Hopefully this will kind of be fun.
I wrote this before I had my timeline set ahead of me, and I feel the same way now:
When people talk about cancer, they talk about winning. They talk about beating it. I imagine myself in a runners lunge, at the starting line with my left foot pressed hard against the block and my fingertips in red dirt. I imagine my heart racing as I glance to my right to size up my opponent, and gulping as I wait for the doctor to pull the trigger on the pistol to begin the race against time. The problem is I can’t see my opponent. I can’t size up what I am against, or train or practice for better odds. I don’t know if this is a win or lose situation.
I turn to medicine. I turn to doctors who I trustingly allow to poison me in order to make me well again. I check my hair, my eyelashes, my fingernails. Every day. I feel my organs inside of me wishing they could jump ship. I felt better before I knew I had cancer, when my body was riddled with it. And now I’m trading problem for problem, spade for spade.
I try to live my life to the fullest, even before cancer (I have people who will vouch for this). I’ve been called an inspiration. I’ve been called irresponsible. Sometimes my fullest is too full for other who feel I’m reckless with my health. The judgment of those who feel I should be more respectful of the disease that could be killing me slowly. I have no respect for my cancer, and I refuse to.
These medications have made me lose my mind. I try to view my memory loss as endearing, although I know it becomes irritating. I get frustrated with myself on a minute by minute basis, wondering if I’m even the same person anymore. But I can’t remember.
I will not be humbled by this experience, I do not feel small. I feel huge and loud and lucky to have the life I’ve had. And you, the people in it. In my quiet moments I silently ask questions to no one in particular, and know there are no answers.
I will go to my grave as if I were stepping on a soapbox. It will not be a loss, because there was never any winning. In life it’s only a “thanks for playing”
I have a benefit coming up on Feb 12th at the Deuce, and as always you can donate at Paypal to firstname.lastname@example.org
I hope you feel inspired by her and empowered by her own courage to fill her life with positivity and have fun rather than wallow in fear and self pity.
Her site, http://182days.com/, has been up for about a week now. I want to suggest a few things of you right now.
I want you to actually do a little more than spend just 15 minutes of your time. I think you should spend 15 dollars of your money to make a donation to her too.
She unfortunately is unable to work and does not have the the means to cover what her health care will not take care of. Do her that favor and help her out.
I have no idea who she is but she deserves a favor from strangers. If you for some reason feel a need to find a personal reason to help her that also helps you, do it to prove to yourself that strangers are willing to do such a thing for someone they have never met. I think we can all feel better and sleep a little easier realizing that people, someone, will always be there for you if you need them.
I do not know how much you know about me or how long you have been reading my blog. But, if you have been following things you know that the last few months has been the second worst stretch of time in my life.
The first being the ordeal I went through while living with an insulinoma.
This time the doctors have finally discovered that I have a severe B12 deficiency and it is the root of my neurological and physical problems.
Real quick, From Wikipedia
“Vitamin B12 is a water soluble vitamin with a key role in the normal functioning of the brain and nervous system, and for the formation of blood. It is one of the eight B vitamins. It is normally involved in the metabolism of every cell of the human body, especially affecting DNA synthesis and regulation, but also fatty acid synthesis and energy production.”
Obviously, B12 is some serious shit! It’s as important and necessary as glucose! Which is what I was deficient of when I had the insulinoma and why my brain was fried!
Both of times are rooted in physiological problems caused by chemicals or lack thereof that changes/damages my brain.
Being sick these times…the physical stuff I have experienced is manageable and not that bad to experience. But, it is hard to explain and I feel it is far harder for others to understand just how horrible it is to experience losing your mind.
And, that is exactly what happened. I lost my mind for the second time.
It is really easy for someone on the outside to insist that you are always in control of your thoughts and actions. But, it is not that easy. And, it is not something you can learn to do very quickly.
It is very confusing because you know you are not doing something you would approve of or would otherwise do. It is disorienting because you call into question who you are as a person and what you represent. It is a feeling of helplessness because no matter how hard you fight it and want to do better you rarely notice any forward progress. And, until you find a reason for why it is happening you feel completely hopeless as well because you do not know where or how to fix the problem.
Here is what an insulinoma and what B12 deficiency is and their symptoms-
“An insulinoma is a tumour of the pancreas that is derived from beta cells and secretes insulin.
Beta cells secrete insulin in response to increases in blood glucose. The resulting increase in insulin acts to lower blood glucose back to normal levels at which point further secretion of insulin is stopped. In contrast, the secretion of insulin by insulinomas is not properly regulated by glucose and the tumors will continue to secrete insulin causing glucose levels to fall further than normal.
As a result patients present with symptoms of low blood glucose (hypoglycemia), which are improved by eating. The diagnosis of an insulinoma is usually made biochemically with low blood glucose, elevated insulin, proinsulin and C-peptide levels and confirmed by localising the tumour with medical imaging or angiography. The definitive treatment is surgery.”
Let’s quickly go over what an insulinoma causes (DOT next to what I experienced):
- Behavior changes
- Clouded vision
- Loss of consciousness
- Rapid heart rate
- Weight gain
- Coma (I would have if I was not pumped with glucose in time in the hospital)
- Permanent Neurological Damage (Maybe. Have not checked into this)
“B12 and folate are B complex vitamins that are necessary for normal red blood cell formation, tissue and cellular repair, and DNA synthesis. A B12 and/or folate deficiency reflects a chronic shortage of one or both of these vitamins. Since the body stores 3 to 5 years worth of B12 and several months’ supply of folate in the liver, deficiencies and their associated symptoms can take months to years to manifest in adults.
A deficiency in B12 can also result in varying degrees of neuropathy, nerve damage that can cause tingling and numbness in the patient’s hands and feet and mental changes that range from confusion and irritability to severe dementia.”
Let’s quickly go over the symptoms of B12 Deficiency(Dot next to what I am experienced):
- Focus/concentration problems
- Poor memory
- Gastrointestinal symptoms
- Fatigue, weakness
- Loss of appetite
- Rapid heart rate
- Shortness of breath
- Sore tongue and mouth
- Tingling, numbness, and/or burning in the feet, hands, arms, and legs
As you can see a lot of the symptoms for both are the same. I was freaking out extra hard for a while because I thought I had an insulinoma again. It really alerted to me that I probably have been suffering from Post Traumatic Stress Disorder. That’s something I need to explore with a psychologist.
The docs do not know what is causing the deficiency as of yet.
It might be something caused by the PTSD, it might be due to part of my pancreas and intestines being removed with the insulinoma, it might be a form of anemia, or something else. I have a follow up meeting tomorrow to start to figure this out.
With that said though, it really does feel great to know there is something physical causing my mental problems. It is a bit scary though when I think of how serious this is.
I mean, if this was left untreated I would end up with dementia. That is as scary a thought as ending up paralyzed to me.
It is kinda messed up to think of just how wrecked my life has been because of this. Because of a lack of a vitamin. *sigh*
I will update again once I know more about the cause and treatment.
I’m finally seeing some light again. =)
I went with my mom and a lot of family and friends to the Komen Race For The Cure LA. My grandma, Eleanor, joined in as well. Both her and my mom are cancer survivors.
It was really great seeing them celebrating their lives and reaching out to lots of others dealing with the disease and giving them hope.
It was a fun experience and I was surprised to see so many people at the event. It isn’t that I am surprised by how many people the disease has affected. I am surprised by how many people feel a desire to support efforts to cure it and help bring some comfort to those that are ill.
Blake and I got some sweet pink shades out of the deal too. =P
Check out the cause: komenlacounty.org
Heaps more photos if you click “Continue reading »”
It’s been a long time since I’ve shot straight portraits focused on head and shoulders. I liked how this self portrait came out of myself and I have decided to do a little series focused on this.
I’m starting to shoot some friends to refresh my skills.
First one is of Jeff Ramuno.
I expect to get a lot more up in the next week as I pull friends away from the coach in the house and put them in front of my lights for a few minutes each. haha.
A new symptom has caught my attention thanks to it occurring much more often. There is this strange sensation of euphoria that washes over my body. Not my entire body though. Just in sections.
It feels a bit like getting tickled. That type of chill that moves out and along a piece of your body. But, it is just the good part of being tickled. Not the jarring part that makes your muscles tense up and often times makes you want to smack the person tickling you.
It seems like it is being triggered by the movement of my head. Specifically from side to side. It happens a bit more when I am moving quickly or suddenly.
The sensation washes out from my eyes down to my neck moving backwards mostly. When I am moving quickly it seems to stem out from my joints. Mainly my knees and elbows and moves along my limbs out to my toes or fingertips. I don’t really feel it run its way through my core.
Playing hockey has become a bit more interesting. That’s for sure. Kinda glad our championship game is this Tuesday. It is probably not the smartest thing to be playing without investigating this further. haha.
Perhaps I should stop waiting on the doctors to return my voice mails and take a bit more initiative to get those appointments with the psychiatrist and with the MRI for my brain set up. haha.
I think I’ll copy and paste this description to the one doctor’s email account now that I’ve gotten it written down. Maybe she’ll have more ideas than the last suggestion checking for some infectious diseases.
Good thing I have a blog to jot things down in! haha.
I got this crazy rad tool donated to me from a friend to help me out with an art project I am working on. It is really amazing how wonderful the people I have surrounding me in my life are. It is always the people that I unfortunately do not see often that really catch me off guard by how much they are willing to help me out.
It is not the scale of what a person does. Simply, that they do something positive. An old friend I had not seen for over a year on New Year’s simply told me they were here for me if I needed someone and one of my teammates on my hockey team that I have had only one serious conversation with offered their time and ear to me last week. Both of those gestures are just as meaningful and special to me as receiving this printer. All of these things are just as surprising to me too.
It is hard to understand how/why someone that I rarely talk to is so willing to stand by my side when I don’t feel like I have done enough to be worthy of that. I suppose that is a big part of the problem though, huh?
haha, aw well. All I know is I’m pretty happy right now and really motivated to work hard on this art project and the other goals I have on my list. I’m thankful I don’t need to work on these things all alone. =)