TUMORS MAN...

derpina

derpina

Active member
They suck. Never thought I'd find myself venting on NS about this because I'm relatively pretty damn positive... but sometimes you just hit those days when a lot of other stuff is stressing you out and you just really start to dwell on it.

I was diagnosed with a condition of the central nervous system (all my nerves are basically fucked) when I was 17 so I have a lot of health issues... Started developing tumors in my lower back in Feb of 09' and they just keep coming back. Going to be going under for my 3rd surgery coming up here.

I've just been really sick (passing out a lot, etc) and in a lot of pain lately and it's scary you know? And then I get so stoked to go out and ride and then once I'm out I realize I can't do the things I use to. Like 19 to 55 in two years. I feel like an ass going through the park not hitting the 20+ ft jumps. I've always been the one to not care what people think but it's been so different when no one around me can see how sick I am.

When you get such a devastating diagnosis at such a young age (or any age) you really have to go through a grieving process. I was about to graduate and go to college and my doctors were telling me I'd be sick and in pain the rest of my life. It really fucks your life plans up. I use to think about what my life was going to be like 20-30 or even 40 years from now... What it would be like living with something like this. Now that I have these tumors I realize how petty that was... because now I worry about how I'm going to live the rest of my life having surgery every year to remove another tumor.

I just really hate it sometimes. It's degrading. Cool story bro.
 
wow, mad vibes. hope you find a good way to cope with your condition. thats a gnarly health problem if I've ever heard one. good luck!
 
I think you might want to move out to Squaw ASAP. Bahahahahaha

I realize this is a serious thread, but that was a spectacular nugget.

If you have pretty much exhausted your treatment options stateside, have you looked into what europe, asia, and mexico do to treat this illness? I mean, hey, why not try everything you can.

And is the pain your limiting factor, or is it the consequence of a fall that is your limiting factor?

 
words cannot even describe how horrible i feel for you man.

i remember when my mom was going through treatment how tough it was to watch her go in and out of the hospital. all of my vibes go out to you man, i know there is a lot of shit here on this website but i can guarantee you everyone on NS is pulling for you.
 
HAHAHAHA Thank you for that!!! I love a good laugh, even at the expense of myself. That's probably the best medicine for me... laughter. I appreciate humor.

The main condition I have is untreatable. Basically I had bacterial meninigitis when I was 16 and it attacked my body so bad it really did a number on my nerves. Your nerves control your entire body... when you feel hot, cold, when you're hungry, everything. Basically my whole body just hurts most of the time because my nerves are misfiring and telling my brain that.

The tumors are related to my condition but we haven't found a doctor yet who really knows why they keep coming back. Originally after my 1st tumor was removed, and based on the type of tumor they thought it was, I was told that there was a 5% chance it would come back in 30 years.... two months later it was back, followed by more. >.<

I'm going to a specialist in Denver now though. There is still hope they will find a cure to my tumors... that's really all I want.

BTW, THANKS FOR ALL THE MAD VIBES...

I've just been having a lot of anxiety attacks this week and had to vent...
 
same.

i don't even know how to respond to this... keep killing it this year, hopefully everything will be fine.

♥
 
Thanks doods! I have to say I do feel like I'm killing it considering... It just sucks because I was planning on doing Grand Prix, etc until I got another tumor... So frustrating. I have my good days and my bad days, I think everyone does though. Ii'm just thankful I can still ski at all... They could be spinal tumors but they're not. So thankful for that.
 
I broke my femur last year, wasnt sure if I was going to be able to ski like I used to, but I'm getting it back slowly.

You have the drive and the confidence to get back on skis. That in itself is a huge achievement, seriously. We're lucky that skiing has a lot of fun aspects - so you cant ride park? Pow.
 
Vibes man. I was diagnosed with a massive brain tumor at age 16. After some wonderful surgeons saved my life I fully recovered other than listing half my hearing and slight facial paralysis. Its scary as shit and sucks. More than anybody this age should have to go through. Vent all you want, it helps
 
I know... I pray for Pow let me tell you!! Summit County has none this year though... =[ That and I love park so much, it's hard to stay away you know? Hopefully taking a trip to Jackson and/or Silverton this winter. Just depends on my health. You can't really predict Fibro unfortunately. Steep and Deep is glorious for me though.
 
Stupid phone, if you need to rant anymore just inbox me man, ik slightly what youre going through and talkin to people helps. Best of luck with this man, you'll be so much stronger at the end of this.
 
Thanks so much! I was kinda hoping some others with tumors/cancer would pop up. It's hard to explain the helplessness. Stoked to hear you're doing well and healed!! I seriously can't wait for the day I can celebrate being tumor free for a year.
 
Definitely man! Its awesome to read that you can still ski other than park though. And while it sucks that you cant do what you truly enjoy, its nice that youre still able to get out there and do what you love. Its kind of an empty helplessness that cant really be described. You feel just utter uselessness because you realize everything is in somebody elses hands now to make you get better. Getting that diagnosis is pretty much the sole factor that solidified my decision to go into medicine. Wanted to sort of repay the services that the doctors provided for me ya know? Best of luck healing up man!
 
For sure! My dad, mom, and bro all work at the same hospital. I always wanted to follow them & when I was real sick in the beginning stages I really wanted to go into medicine. Then I kinda realized my own health would keep me from that... but that's SICK you're going for it. I think sometimes the best doctors are the ones who have been there.
 
Absolutely. Im actually shadowing my neurosurgeon next year to get some experience. Thinking of going into neurology if i can manage to get into med school after applying next year. Plus man, look on the bright side. Just use the excuse, "I have tumors and could die" with girls and theyll sleep with ya hahahaha. Just kiddin, thats low, but no lie it works...
 
That's SICK!!!

Oh and ME: 383707.jpeg

BAHAHAHA. Sorry... I should have pink name or something.

NOT SAYIN I'D TURN DOWN A HOT CHICK THOUGH... ;-)

BAHAHAHA.
 
Hahahahaha, fair enough! Yeahhh im at parties and it just.passes in conversation cuz of my deafness sometimes. "whoah are you just saying that to sleep with me?" Ummmm no. anywhoooo, I shouldget off. Kiiiinfa drunk watchin football. Fuck Iowa......dammit. Definitely keep me updated on howtyings go.
 
I have never had health complications this severe, but this actually mad me quite sad. ++vibes
 
wow this definitel ymade me shed a tear, lifes just straight fucked, i'm also drunk as fuck t the moment but still. definite vibes to you

i'd lov eto just hang oout and actually have a good talk abuot this, you really seam like a strong person for what your goin through!

keep up :)
 
wow this definitel ymade me shed a tear, lifes just straight fucked, i'm also drunk as fuck t the moment but still. definite vibes to you

i'd lov eto just hang oout and actually have a good talk abuot this, you really seam like a strong person for what your goin through!

keep up :)
 
My family has a huge history of tumors. My dad has 12 brothers and sisters, and all but 2 or 3 of the kids have had some sort of tumor, and a bunch of my cousins have had them as well. They all for in the neck or lower skull/ear. My dad has had to have surgery a few times for tumors that have formed on his carotid artery. And I have both an aunt and uncle that have had them form on their inner ear and facial nerves, causing deafness and paralysis.

My vibes go out to you Ali, it's definitely a shitty situation, but hopefully one of the doctors figures out exactly what's going on and sets it all right again!
 
Just posted some:

HealingVibes_in_a_box.png

 
god. +++++++++++vibes i feel so bad for you. sometimes you need to come to a supportive place like this just for vibes. i hope all goes well. just keep your head up
 
SO, a few things...

I meant Feb of 2010, not 2009. So next month it'll be two years since my first tumor diagnosis... crazy to think about.

And I'm actually doing pretty good... Some unrelated shit going on in my life and a little bit of rum influenced me to vent. So yeah, please don't pity me... I'm a tough cookie. All's in a day work for me!

But I have my good and bad days. Last week I couldn't keep anything down and I kept passing out and had no energy... Weeks like that it's hard to ski BUT I definitely have my good days too, where I can still do park (just for shorter periods of time).

There are a lot of things to be grateful for though... I haven't had to lose my hair yet! It's so long and (being a girl) it would obviously be devastating to lose. I have the most incredible friends and my parents have been so supportive of letting me live the life I want. Lastly, it's not a death sentence if they can't find a cure. It just means A LOT of surgeries through my life.

And oh yeah, I'm grateful that my football team is kickin ass. GO PACK! hahahaha :D

316274_2116430042586_1600770263_31859984_863710412_n.jpg


 
this is a legit fucking thread.

I go to work every day hoping to meet people like you. If you care at all, having a positive/optimistic outlook (like you do) affects all of us that take care of you at the hospital.

We talk about people like you for months and sometimes years after you leave. It gets us through our collective days.
 
HAHAHA. I'm glad after my venting thread people can still see my 99% of the time optimism...

When I first got diagnosed with my nerve condition at 17 I gave up on life. Got super depressed... and that is when I got the sickest. They took me out of high school completely and I was admitted to the Pain and Palliative Center at Children's Hospital. (For the people who don't know, palliative is end-of-life pain control/care to relieve suffering etc.)

Those are some of the darkest days of my life. And then I had this epiphany... that it can take my body but it can't take my soul. I realized that everyone has boundaries and limits and there's nothing wrong with that. It's fucked up to tell kids they can do and be anything they want to be because you're setting them up for failure. The important thing in life is to recognize the things you have accomplished considering and not dwell on what you can't (which I do, sometimes, clearly, but it's human).

I started doing what I love again and just started taking care of myself... eating healthy, staying active, staying healthy, LAUGHING...

There's a lot I can't control like these tumors, but I can control how I deal with it and my outlook on life. There is always aspects you can control.

I just try to live my life so if I never would have gotten sick my life wouldn't be that different as a whole. I'm happy to say I'm still accomplishing that goal. 4.0gpa in my 3rd year in college, skiing a lot, traveling, and killing it!!

But anyway, what do you do for work?
 
i comepletly feel for you man, and i understand those stress days, i had one today.

but all i can say is look forward to a new year with new research, hopefully new treatment and lots of laughs and love

if u need someoen to talk to, im only a pm away
 
SO NOWWWWWW you should tell me how to pronounce your first name and what ethnicity it is? HAHAHAHA
 
Damn mad vibes to the OP.

Degenerative conditions of the CNS can be devistating. The fact that you are out shredding and staying positive really says something about your character.

What is your condition called specifically (if you don't mind me asking)? I am just very interested in neurological functioning, specifically when there are defects within the CNS/PNS.

I hope your tumors go into remission. But either way know that NS is pulling for you.
 
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