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Edited by Fallen003: 6/5/2016 11:25:29 PM
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A thank you to Bungie, from a guy with a brain tumor (Update 6/26/15) Good and bad news

June 5, 2016 update Holy crap guys, it's been a year since my last update? Man time has flown. So I'm popping in by request to give an update. It's been an interesting year to say the least. Good news first: My latest visit with the specialists was three weeks ago give or take. The tumor is stable and shrinking, down to ~5mm or so in size. Doc thinks 2-2.5 years more of medication and it'll be gone. Since it is stable, they are looking at other issues that are wrong with me. I should also (hopefully) have my disability approved by the end of the month. I am also 100% off insulin now. So my body is slowly healing. Bad news that isn't too horrible: Let's see... The missus and I separated last August. Thankfully it was an amicable thing. I tried to go back to work, but crashed and burned horribly, only being able to work 2-3 days a week isn't a good thing at a full time job. It was worth a shot though. I was diagnosed with AGHD, as my body apparently isn't making growth hormone. Like none. So I started shots for that on Friday night. Doc thinks that in a year or less, the shots should really start fixing a lot of my other issues with memory, focus, etc. It'll be nice to be able to explain stuff without losing my train of thought. I've spent about an hour typing this so far. The nerve damage doesn't look like nerve damage. I have a MRI on Monday to look at my C Spine, as the neuro guys think one of my many back injuries might have crushed some nerve fibers. Still, at least we know the nerves are functioning, just the pain signals aren't getting where they need to go. All in all though, that's not what I'd call "bad" news. I'm finally getting a lot of the answers I've needed for the last few years. It's only taking 3000 mile round trips to Seattle to get them (I'm in interior Alaska) but it's worth it. So the current med tally has gone down, but what is left is more specialized stuff. -Cabergoline 0.5mg twice a week -Testosterone Cypionate 80mg a week IM shot -Novotropin (HGH) 0.2ml shot daily -Metformin XR 500mg daily Thanks again for all the 'get wells' and wishes everyone. Honestly I'd forgotten about this until I got a message on xbox live the other day. Hope to catch you guys around and probably get shot in the face since I suck at PVP :D ------------------------------------------------------------------------------------------------------------------------------------------------------------------ Edit: Moved from #Destiny to #Bungie for a better fit. First off, it isn't cancer thankfully. Downside is that I have a lifetime of medication that I can never go off of. This is where Bungie and the Destiny Beta comes in. Truthfully, I doubt out of all the forum posts and emails that they'd ever read this, but I'm telling my story anyhow. I had my final exam for disability due to my tumor on the 22nd. To say I was a mess before going into the psychological exams would be putting it lightly. I haven't slept more than 4 hours a night since I lost my job back in February from being unable to work. When I got out of my four hour appointment, I had an email. Not just any email, but one containing the beta download codes for Xbox. The moment I got home with my wife, Destiny was downloading, and we spent the entire beta test ignoring my problems for a few days. It was nice to feel normal, even for a few days. Nice to forget all the crap that is going on in my life and let it all fade away into having fun playing xbox with the wife again. Nice to remember what life was like 10 years ago playing Halo when we were dating and life was a lot simpler. It was nice to know that even though I'm going through hell right now, that there was still some kind of hope. I got a letter in the mail this past Saturday saying that (even with the tumor messing up most of my function) that I should be able to work in some capacity to the point my disability was denied. Truthfully, I have no idea if we will be homeless or not when the full version of Destiny comes out, but that isn't the point to all this. My point is simple really. Thank you Bungie for putting something out that even in an incomplete state, it could help me forget the daily migraines, medication injections, and general hell that my life has been for the last eight months. That is something truly impressive to experience. Thank you Bungie for continuing to put out great content, and even if I end up unable to play the full version of Destiny, I wish you the best on the launch. Your staff deserves a round of applause for the great game they have created. In regards to the comments, details for my condition are in a comment further down the page. Thank you all for the well wishing. Normally, I'd go comment by comment and say thank you, but it is looking like I'd have a ton of them to go through. Thanks guys, and with a little luck you'll get to shoot me in the face in Destiny sometime lol.
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  • See... you would never find this on a COD forum. [i]Bungie is magical.[/i]

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    • For me games are the best distraction from all the real world s#1t we have to mow through everyday. They definitely helped me hold on to my sanity during my time in and out hospitals and the Ronald McDonald House. It's awesome you have someone to share your passion with too. Finding other people to play PSP games with over ad hoc networks was really cool for me. I wish all the best to you. Hang in there, we'll be praying for you.

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    • I know how you feel, I just spent the day filing for state disability due to my own medical conditions (both mental and physical) that have now prevented me from working and living a normal life without pain. After my military service I started using games in the same way you mentioned above, a distraction. Many of us in the gaming community know and understand how daunting life can be (kids, marriage, medical conditions, etc.) but that is what unites us as a global community. Take care, me and the mrs feel for ya (even if she hates gaming, she understands why I do it).

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    • This is why I love video games, stories like yours that inspire people to do more... It's not much but I would like to give you $20. Maybe setup a fund or something for you that people can donate to etc etc

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      • Hey man, I also have a brain tumor, inoperable, on my brain stem. I'm happy to see that you find something good in life and enjoy it. Keep on keeping on.

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      • Man I feel your pain. I to am out of work with no money because I had half my right lung out a few weeks ago. And the beta came at a time when I was really down! Man I'm lucky tho, my fantastic beautiful girlfriend found me a job as a kp and they know about surgery etc but they're gonna hire me anyway. Who knows what the future will bring but when things are bad we've always got someone who loves us and will help us through. I say thank you to bungie but I also say thank you to all the wonderful people who love and care and let us play our games til 3 in the morning lol we will always need you.

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      • Sorry to hear your life has taken such a crappy turn. It's nice to see the positive response from the game community though. I'm going to head over to your fundme page. Hope it helps.

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      • Edited by Fallen003: 8/8/2014 5:55:35 AM
        For those who want to know the details, what I have is called a Prolactinoma. It is a benign tumor that forms on the pituitary gland. In my case, it formed right between the optic nerves so my vision is iffy some days, light sensitivity, balance isn't so good either. The joyful part is that it caused my body to stop producing the markers that tell my body to make testosterone and insulin. So pretty well overnight, I went from being healthy to being an insulin dependent diabetic and having to (intramuscularly aka big ass needle) inject testosterone and insulin to stay alive. For the tumor, I am on a medication called Cabergoline that is supposed to keep it from growing any larger. Downside is that without insurance, these medications cost over $1000 a month. So it kind of boiled down to the point that I'm having to look for a job that I can do from home/doesn't require me to move around much. It is going to be interesting but I don't have much of a choice. -65f winters in interior Alaska (yes it gets that cold every year. I've seen colder a few times) don't really work well for the homeless bit. Both the missus and I are job hunting, but I at least wanted to get this posted in case we can't pay internet or something soon.

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        • Would it be that I was in a financial position to help... while I can't assist you financially... let me say this: Guardian, You fight, proud, strong, and against the implacable darkness, In our darkest hour it is warriors like you that give us hope, You are one of us, a beacon of hope, a bastion to which life clings to, I hope that we, your brothers and sisters in arms, can give you hope as well, For alone in the ocean of foes and death, we fall, Together, we are as mighty as the moon, we control the ebb and flow, Even the darkness cannot stop us. I hope that helps, it is what little I have for you, I do hope you are star side come 9/9, and while I won't see you, I will know that among the stars there will be another guardian fighting to defend the last of humanity. Stand Tall, Guardian! Your Brothers and Sisters await!

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        • Appeal.. refine your case and appeal. Then Refine your case and appeal. Then Refine and appeal. Noone.. Noone has ever gotten disability on the first appeal. The one you paid for through your work. never. Take notes give dates, give specifics. When they come back with the next denial. Prove that to be wrong. The next denial. Prove that to be wrong until they cant deny the claim. Those insurances companies are the most profitable in the class because they are under less demanding restrictions by the government because they are NOT required by law. Car and home insurance compaines ARE required by law so they are forced to pay after decades of refinements to their laws.

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        • I may not have a tumor....but I can relate. I a 25 year old man child was diagnosed with a condition known as Ehlers-Danlos Syndrome type 4 in October of last year...which means I'll get aneurisms for the rest of my life....in July of 2013 I nearly lost my life to a aneurism in my iliac artery right below my heart...it went from the size of a golf ball to a baseball in under 2 days.... Anyways...I was instructed to pursue disability. I was being evaluated for mine when I decided to drop my case....because there are people like you out there that could use it more than me. I am putting myself through school to become a inspector for job sites...I hope the best for you and your family....I just wanted to let you know your story touched my heart. You aren't alone my friend, take everyday for what it is. Note: I know I suck at writing. :) please just be supportive to this man in his endeavors.

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        • good luck I hope you make to the launch

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        • Man, that would would tough. Prayers for sure from me.

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        • Feel like I should chip in but no idea what to say. What games you like is always gonna be down to taste but I'm glad something helps dude and I hope it all comes good for you

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        • Really sorry to hear all that. I hope you can get the help you need.

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        • Don't worry it gets better after getting used to it.

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        • I am sorry to hear of your plight, but I am happy to hear this game helped alleviate some distress for the few days you had it! It may not be of much help, but insurance companies hire for work at home. Did you try appealing your disability case? I wish I could be of more help. I wish you and your wife the best fellow Guardian, and it would be a pleasure to have my own husband fight alongside you on the Box! Take care, and do keep us updated as to your health/economic issues. I am sure I speak for all our fellow Guardians when I say that we want the best outcome from what life has given you. Be strong, be brave, and don't give up hope!

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        • Much respect! Hope from here on out things only get better for you! It takes some solid metal gonads to toss that up btw! May the sound of your solid brass nuts Ring through the tower like a bell for a long time!

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        • I was physically in the hands of the Veterans Assistance administration after bladder cancer surgery, placed in a local nursing home by the V.A. for recovery for six months, when I received the notice that my disability was not approved. That is a condition that will never go away and is so debilitating that any kind of work is impossible. The reason given was that insufficient medical evidence of disability was provided. It took the big foot of the V.A. to step on both the Social Security Administration and the state of Washington to get anything accomplished. It appears to be normal procedure for disability to be denied after application for all except those who feign disability while living in homeless shelters. Those are the only ones I have witnessed being accepted into the program without any hassle or delay. "Law of Games" is offering a great blessing to you. It is actually exactly what must be done in order to win your claim, and that is part of your Destiny.

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        • ..

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        • Hey brother, sorry to hear about your problems man. My grandmother is going through the same thing. Are you a PS3 gamer? If so I'd like to give you a Limited Edition. My playstation got stolen not to long ago, Im trying to save up for a new one, but seeing your post I wanna help. I wouldnt be able to get a ps3 for a while and my destiny is completely paid for already. I wanna send it to you. Keep fighting the system friend, it took my grandmother 2 years but she fought through it, and eventually got her Disability. If interested in the offer please message me, Thanks. Stephen

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        • Nice blog

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        • Bravo on your courage and will to survive. Looks like you got the community behind you. You should seriously change your gamer tag from Fallen003 to SurvivorMan !!! Cheers Bro.

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        • I am sorry for how things have been so far, just keep fighting and don't ever give up. I'll pray for you every night and try to donate, good luck and take care ;)

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        • Get well.

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        • Wow, proud to see so many people running to revive a downed Guardian. Faith in humanity restored. To Fallen003 keep on keeping on and best of wishes!!!

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