Stuck

I feel...stuck. Since I made the decision to take time off of college to get my health under control...when I'm not at doctor's offices, I lay around watching TV and playing Facebook games. I have almost no social life whatsoever as everyone I know is pretty much from Loyola. I don't think that I should be at school...because I'd miss so much work just from doctor's visits that it would be extremely detrimental to my grades. But I can't stand this life that I'm now forced to live. It's not just boredom, it feels like isolation...and it's so very depressing.

Now it looks like my car is going to be totaled after the accident, which means I have no means of transportation, so I can't even go visit my friends at Loyola on the weekends (which is where I was headed when the car ran into mine).

HELP!

My future seems so grim, so bleak...not to mention I doubt anyone even gives a crap about what I'm going through...my own parents don't even bother to listen to how I feel, or anything I have to say for that matter. I don't want to pester my friends by calling them too often...and I have no idea what too often would be. They don't call me, so I assume they are all really busy, or just don't care enough to call.

So what do I do? My parents can't afford to pay for me to go to college again, and once I have to start paying for my own health insurance, it will be so expensive from all my medical conditions, there is no way that I could possibly afford to pay for student loans. Not to mention I'm always going to have all of these medical issues, and doctor's visits...so how can I manage college? The two years I was in college were miserable (and amazing). I was always teetering on the edge of a breakdown, and frequently did in fact have breakdowns.

Well...I guess I'll do what I always do...

Wait, dig deeper into the hole that I've begun for myself...and pray to God that someone's coming with a rope...

Loneliness, Cars, and Stress

It's been a long time since I've posted on my blog, but much has developed so I think it's about time I updated it. It's probably easiest for me to go from most recent events backwards s0 that's how I'll be writing this post.

I was involved in a pretty serious car accident this Saturday. I was about 1/2 or 3/4 of the way through the (uncontrolled) intersection heading North when I was hit by a car traveling West on the perpindicular street. It happened extremely fast, and I had thought I blew a stop sign (which I haden't) but the whole event left me shocked, scared, and my chest hurt pretty badly from the airbag and seatbelt. Their car was almost certainly totaled. and my car took extensive damage to the front right side, taking out the bumper and dealing damage to the engine. I've been working on getting the car released from the impound, and have no means to get around since my parents no longer trust me driving even though the accident wasn't my fault. That means (since my father is traveling for work and my mother leaves her car at the train station everyday, and tells me she doesn't trust me enough to drop her off and use the car while she's away) that I have no way to go to any of my doctor's appointments, get to my therapy sessions which are twice a week, pick up groceries if I need to, or go anywhere.

I attended Camp Mak-A-Dream, which is a camp for brain tumor/cancer survivors for 4 days in mid-August in Montana. It was an amazing experience, I made a TON of great friends (unfortunately all but 1 live out of state and quite a distance away) which unfortunately mad it all the more difficult to leave after having met them such a short time ago and after forming such strong connections.

I was diagnosed with Stage 3 Fibrosis of the liver due to non-alcoholic steatohepatisis (a.k.a NASH or fatty liver disease) several months ago. To make the explanation of how they found it short, some blood work showed elevated liver enzymes which caused the doctors to have a liver biopsy done, which caused the diagnosis. My "previous" liver doctor had told me I had to lose weight in order to avoid my liver reaching Cirrhosis. Once I had decided on Gastric Bypass that there wasn't any rush to get the surgery done. Thinking that may not have been the best advice, I decided that I would take the rest of the current semester (back in spring) off of college, as well as the Fall semester and get my health on track (including having gastric bypass). I successfully underwent surgery on July 15, and although the surgeon did an amazing job, the care at the hospital by the medical students was "less than satisfactory", as they screwed up my medication, and didn't fix it until being informed three times myself. Thank goodness that I was aware enough even with all the morphine to notice the issue. Since the surgery I've lost a whopping 65 pounds (approximately). Unfortunately, the second biopsy they took during the Gastric Bypass showed that my liver had in fact reached the beginning stages of Cirrhosis (but luckily all that means is we have to keep an eye on it to make sure it does not progress, and there's still hope that the damage can reverse itself).

The decision to drop my classes in Spring and take the Fall semester have come at a cost. Financially, we lost almost all the tuition we paid that semseter to Loyola (which is not an inexpensive college to attend). In leaving Loyola, I have also lost almost any sort of interaction between my friends (all of which are VERY close) from school, and there pretty much the only ones I have. Living at home with my parents is also difficult, as we constantly at butting heads for one reason or another, which I absolutely hate. My parents seem to expect me to do whatever they ask whenever I ask (which I'm very happy to help out around the house), but when I ask a simple request, or have a suggestion on something, they 99% of the time flat out refuse or shut me down. For instance, yesterday I went to lunch with some friends I met at a concert (they are in their late 40's) they say they don't feel like it, and spent the rest of the day watching TV or messing around on their computers. And the second I try to politely tell them that it's important to me, in this or any other situation, I get attacked saying I'm talking back to them, or just them saying my name in a loud, angry, and frustrated tone. I feel so insignficant, and worthless at home, and as a result in general.

I'm looking for volunteer oppurtunites so I can get out of the house, and maybe do some good as well. Hopefully something will work out, although I'm finding that many volunteer oppurtunites simply don't have any more room for additional volunteers.

Anyway, that's basically what I've been dealing with.

Lonely...

One of the hardest things for me is how alone I feel. I have always been a person who thrives on not just the interactions with people, but the friendship and compassion within those relationships. But now I feel as if I don't have that with anyone. My family and I once were very close, but ever since we moved here and they started new, more demanding jobs, they now have little time to do much else. When we do interact with each other, it normally ends up in an argument for one reason or another, sometimes simply because they are stressed and need to release some of that stress they have pent up inside of them.

I found some wonderful friends at Loyola this semester. But after having to withdraw from classes this semester so I can undergo sleep apnea surgery (which I had a few weeks ago and am now fully recovered from) and eventually gastric bypass surgery, I have had little contact with them. Unfortunately, the majority of my 'friendships' have not ended well, so when I have talked to my new friends about visiting them, and they tell me they will call me with a day I can come but never do, it leaves me in an incredibly difficult spot. I feel so conflicted. On the one hand I know that they are probably dealing with incredibly difficult exams, probably finals as well, and could easily forget about having to call me back. But at the same time, this just confirms my feelings, however foolish or untrue, that nobody really cares about me or how I feel. My own parents dismiss any opinions I may have, or when I try to talk them they tell me that they're simply too busy. I'm not talking about on occasion, but every single time I try to talk about something with them.

 

Even more difficult is the mask everyone in my family wears and this act we put on at home. None of use ever talks about how we're feeling to avoid conflict, and it's come down to only talking to each other over subjects of complete unimportance, and not asking anyone to do anything requiring a reasonable amount of effort. Frankly, it's come down to the point where my father, who is by far the best in terms of, well, actually acting like a family member should in my family, is so completely worn out by his job that he is either working, even on weekends. Or he is too tired to do anything other than watch TV, which he can barely find time to do that. My mother comes home from work, and goes on the computer, watches TV, and then goes to bed. You can't talk to her during this time, which means you can't talk to her. On the weekends, it's the same routine, except now it includes cleaning the house and getting her hair and nails done.

I'm lonely, I miss the family I remember back when I was younger. My parents were actually decent to me, loving and caring. They weren't miserable from their jobs. Not so worn out that they can't find time for their own family.

Frustration and lathargy

My mother always is telling me how I live such a "cushy" life and how I have no right to complain. She tells me how so many others are suffering from hunger in other countries, and goes on and on and on...look, I know I have it a lot easier than others. But when for 10 years of your life, although still impacted to some extent from the first surgery, you've lived a fairly normal life, only to have it taken away from you, it's hard not to dwell on it. Everyday I'm tired...really tired...and my body can't regulate its temperature correctly so I'm hot all the time. I don't produce testosterone, and due to new liver problems that have been discovered, my doctor has had me discontinue using it. So lacking that is yet another reason I feel like crap all day everyday. How can I be optimistic when I can't even feel healthy? I act miserable not out of pity, but because I am literally miserable. What's so hard to deal with is how others automatically assume that I exaggerate everything I'm going through. Worse still is that my family does this most out of everyone I know. It's hard...I understand that unless your going through what I am, you couldn't possibly know what it feels like. But I swear my mother tries to be ignorant of what I'm feeling...every time I try to appeal to her empathetic side, she acts as if she in fact has it far harder than I do. She works all day, while I sit on my ass all day long, how could I possibly have it worse...

Living at home has become a chore. Everyone here makes me feel like a burden. Every time I can't do something, like today when I wasn't able to help my Dad lift a 200 pound 50" inch TV up the stairs from the basement (we're selling it), I get a guilt trip about it. That's an extreme case though. The smallest things I'm given grief over. And when I bend over backwards to do whatever I CAN do for my family, like running errands all day long for them...going out of my way to make them happy in any way I can, whenever I ask for the smallest thing I automatically have crossed the line and am asking way too much.

Now my life has become doctors visits, and avoiding dealing with my life as much as possible through video games, movies, chat rooms, whatever means possible. I know it's bad, I know it's wrong...but nothing ever seems to get better. I feel trapped and entertainment provides an escape. It's the only time I can not live this miserable existence that has become my life. And although I may not feel happy when I escape my life...I'm not miserable.

I had friends while I was at college, and for the first time in my life, I felt liked...appreciated. One of my friends that I met this year actually called me to go to dinner every night. He cared about what I have to say, and seemed to genuinely care about what I felt and what I am going through. No one, not a single person, has taken the time to call me more than once or twice to do anything. It's not just that, it's the fact that he actually wanted to be around me...the most my own family does together is sit around and watch an occasional TV show once a week, if that often. We hardly talk, and when we do if it is of any significance (for example, a decision regarding my health that has to be made) it ends in an extremely heated argument. There's been four so far that have lead to me taking off because of how psychotic my mother gets. She literally screams at the top of her lungs at me...all because I have my opinion on what course of action should be taken in my health. I don't make demands, I just offer my opinion, after all, it's my health isn't it? I'm used to it by now. No one ever asks my opinion in my family, no one bothers to spend any time doing anything meaningful or fun...they just order me around and expect me to obey and shut up afterward.

I had to withdraw from classes this semester because I needed to have surgery for sleep apnea, and with any luck will be having gastric bypass before my liver reaches cirrhosis. I have steatohepatitis...a.k.a. fatty liver disease. If I don't a lot of weight, and fast, my liver will have serious irreversible damage done to it. Of course my insurance company is going to make my life a living hell before they ever approve I can have the surgery, so I may not even get it.

I worry about my future...I'm not sure I could ever put into words why I do...but let's just say after having two brain tumors you have issues that make working and studying a lot harder for you than others. The location the tumors were in also regulates being impulsive. So I tend to get emotional a lot more easily than others. I'm often categorized as a crybaby, or any number of things...in addition to fat boy.

I feel like I'm just a spectator to my life. I can't control anything that happens in it. Everytime I think I've got one thing beat, something else pops up to take its place, or I never get over the original problem. I found out this year I most likely can't have kids...one of things that I always thought "at least one day I'll be able to do that".

There's so much more I'd like to say...but having to dwell on how miserable I feel and the reasons why makes me nauseous. I hope someone out there cares, someone understands... 

Introduction

I'm a 19 year old guy who was diagnosed with a brain tumor at the age of 2, and then had a recurrence at the age of 12. The tumor was benign, but as a result of its placement on the brain, I now suffer from many quite dibilitating conditions, including panhypopituitarism (no pituitary function), diabetes insipidus, serious depression, and many others. After the second surgery I underwent radiation therapy. Because of the radiation, the little pituitary function I had left was destroyed. I gained nearly 130 pounds due to a condition called hypothalmic obesity, which means that due to my hypothalmus not functioning, I am hungry nearly all the time, as the hypothalmus regulates hunger. I'm writing this blog because my family just can't seem to understand what I'm going through, or find any sort of comforting words, and rather push me to my limits and get angry with me for the things I can't do. I feel really alone...