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#1 Ryan

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Posted 24 November 2008 - 09:41 PM

Hello, my name is Ryan (LAST NAME REMOVED) and I am 17 yrs. old. I am currently in a low point in my life because of all of my medical issues. I have narcolepsy, cataplexy, epilepsy (brain seizures), manic depression, severe depression, and pervasive developmental disorder (PDD). I went through a lot of stuff my freshman and sophmore years of high school. I was put in St. Mary's Hospital, in Chicago for a total of three months in two years. The doctors there thought I had psychosis and was not diagnosed with narcolepsy until I was a junior. I was so depressed that I was doing all sorts of things a minor shouldn't have been doing and some that no person should even do. During the months of October, November, and December of my sophmore year I was drinking hard liquor before school, at school, and after school. I was very depressed and that was the only thing that could suppress my depression, along with my habit of smoking and chewing. Plus with me drinking, I was invited to more parties, which boosted my self-esteem. But I've been good for a whole two years now, until about a month ago. It seems as though my medication isn't even working anymore. I take 100mg of Topamax twice daily, 10mg of Ritilin in the morning, 27mg of Concerta in the morning, 18mg of Concerta in the afternoon, 150mg of Zantac twice daily, and 2000mg of Depakote at night. (I know that my medication give me most of the symptoms that are about to be written but they are far worse, and getting worse even though I am taking my medicine). The worst thing that has been happening to me in the past month is a headache. This is not an ordinary headache it is only on the right side of my head. It started in the back of my head, moved down behind both of my ears, down in to my jaw, under both of my eyes, in to both of my temples, to the right side of my forehead, and then down the right side of my neck. My right eye also feels as though it is closing up, and I've been seeing dots/stars. Now the wierd thing about all of this is that the headache has been nonstop for a whole months time. Lights, noise, and certain foods & drinks set the headaches off, to get worse. The are so terrible that they make me cry and I can't even pay attention in school. I have tremors even worse in my hands now. They are so bad that I can't even write using pen or pencil for too long for my hands will shake for at least ten minutes. Otherwise, they are always shaking like I am an alcoholic. I have just started to get tremors in my legs as well. When I walk I sway back and forth, as though I am going to pass out and fall over. I have been getting about 3-5 hours of sleep every night, no matter what time I go to bed. When I do fall asleep I feel as though I am not actually asleep, because I can hear everything going on around me and even the slightest noise wakes me. I am always feeling nauseous but I haven't vomitted yet. I've been feeling slower in response and in everything I do. I have been having terrible word block, where I can't remember what word I am thinking of. I am also suffering of severe memory loss. My memory loss is so bad that it is like my day is a dream to me. I only remember about four seconds of what I did that same day. What I mean by that last sentence is that at the end of each day I have a feeling of waking up and I'll have no recollection of how I got there. It's the scariest thing ever, because I will only remember about four things I did that day, but not the whole event, just about a second of rememberence or so. I am also not aloud to drive a car further than about ten miles because of my lapses. And last but not least my irritability has skyrocketed. I have had to seperate myself from all of my friends at school, just so I don't snap on them.
If anyone can help please do, I hate being 17 years old and not being able to hang around with my friends or hold a full conversation with someone, because of this.


#2 sleepless sleeper

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Posted 24 November 2008 - 11:17 PM

Hey, hon, I want you to know that I want to answer you, but I am so tired. I'll check back hopefully tomorrow, but it may not be until the next day. I'm so sorry because I know that you're needing someone to talk to. Please know that you're in my thoughts and prayers. I will get back, I just can't concentrate well at the moment. 17 was horrible for me with an undiagnosed N, so I somewhat know what you're going through. You're going to make it, and you're going to be fine. You just can't see it yet. What you're going through IS going to make you a beautiful person. Life can seem so hard. so unfair. even desperate. Don't lose yourself to drinking. You are so young and have so much in front of you, but I know that you can't see it yet. It is there. This is the third time that I've cried while posting on this site. 1 - my first post I was so relieved to find this site. 2 - the other night when I was worried about an ongoing fever and I thought of my 10 y.o. son. 3 - tonight, reading your post and remembering how miserable I was at your age with a life that sounds a bit like yours. It was horrible. I felt so isolated, and I was so isolated. I know that there is no quick fix so I'm not going to through a bunch of cliches your way. What was true for me, as I stated already, is that things did get better. You're just going to have to dig down deep for strength and keep going. The good news is that you've been diagnosed, and it will make a difference.

I will be back.

#3 greatbig47

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Posted 25 November 2008 - 12:26 AM

Okay, Ryan...listen up.

I'm Stu. I'm the web guy for the forum, and from now on I hope you can consider me a friend. Feel free to IM me ANYtime.
Here's all I have to offer (get your bookmarks out now)...

I have narcolepsy, cataplexy, epilepsy (brain seizures), manic depression, severe depression, and pervasive developmental disorder (PDD).

You may HAVE these things, but you are NOT these things. Don't let anyone tell you otherwise. For as long as possible, please try to ignore these "labels". The only people that these labels *might* be helpful to is the doctors around you. yeah, you might have these "symptoms", but if you can escape thinking of yourself as having these exact problems for a little while, I bet you'll experience a step up on surviving everyday.

I was so depressed that I was doing all sorts of things a minor shouldn't have been doing and some that no person should even do. During the months of October, November, and December of my sophmore year I was drinking hard liquor before school, at school, and after school. I was very depressed and that was the only thing that could suppress my depression, along with my habit of smoking and chewing.

It sounds as if you have a really great thing going for you, and you should celebrate this one fact as much as possible...You know right from wrong. The world is full of dumb ass people that don't have this gift. For a bit of relief and a boost to your self esteem give yourself big ups on this. Perfectly healthy people can fail to come to this conclusion, and they end up being the person NO ONE wants to be. Be thankful for this, and give yourself big credits for this.

Plus with me drinking, I was invited to more parties, which boosted my self-esteem.

Just consider for a moment that your drinking wasn't what got you to partys. Maybe it was that you're a really cool person? Maybe there was more to you than your drinking? Maybe your friends were attracted to you because you aren't like everyone else? Obviously you'll have your occasional dickweed that will not want to drink alone, so he'll befriend ANYONE in order to feel alright about himself (or herself), but not everyone is "That" person.

Peer pressure is, and always will be. I know you infered that this is all stuff that no longer around you...remember I said celebrate your wisdom? When you see a future of what is going to lift you up (using your brain and knowing right from wrong), life REALLY get good...seriously.

We could easily throw "alcoholic" in the list of things that's wrong with you, but that's not a very productive outlook, is it? Can you hear it now?

"Look, everyone! Here comes alcoholic, narcoleptic, cataplectic, epileptic, bi-polar, and pervasive developmental disordered Ryan!"

You are my friend...To me your just going to be Ryan smile.gif
My friend Ryan is one smart guy. He's soooooo much more than a stupid label. He knows right from wrong. He's smart enough to surround himself with like-minded people, and refuses to have people close to him that expect anything less.

It's not uncommon for narcoleptics to get caught up in addiction. It's an ugly jail cell we throw ourselves in to. Don't take it likely if it's still keeping you down. Do whatever it takes to give Alcohol the big middle finger. I know you know better (you told me so!), so don't let it entrap you. 12 step groups...Friends and Family....God....Prayer...meditation...Whatever it takes. It never did anyone longterm good...but you know that.

Okay, bud...place the "What the hell were you thinking about drinking and taking medication?" paragragh here. Your smart enough to write it yourself. I pride myself on having smart friends wink.gif

I take 100mg of Topamax twice daily, 10mg of Ritilin in the morning, 27mg of Concerta in the morning, 18mg of Concerta in the afternoon, 150mg of Zantac twice daily, and 2000mg of Depakote at night.

Wow...Ryan! Thats a lot of medication. It looks like there's a CRAZY balancing act going on inside of you!
I'm not a doctor or even a medical professional, but I did have a time when I had a chemistry lab going on inside of me also.
I had doctors giving me pills left and right, all on the hopes that it *might* make things better.

These are the same a-holes that ignored me when I told them I fell down when I laughed. They wouldn't even look up from their note pads! You'd think they would at least ask a question or two.

So if your taking your meds, and they are not doing you any good...why take them? Many of us who are misdiagnosed always slam into that question sooner or later. My time for that slam was in a "Respite" for people with serious mental disorders.

(I know that my medication give me most of the symptoms that are about to be written but they are far worse, and getting worse even though I am taking my medicine)

I told you I have smart friends, didn't I?

QUOTE
The worst thing that has been happening to me in the past month is a headache. This is not an ordinary headache it is only on the right side of my head. It started in the back of my head, moved down behind both of my ears, down in to my jaw, under both of my eyes, in to both of my temples, to the right side of my forehead, and then down the right side of my neck. My right eye also feels as though it is closing up, and I've been seeing dots/stars. Now the wierd thing about all of this is that the headache has been nonstop for a whole months time. Lights, noise, and certain foods & drinks set the headaches off, to get worse. The are so terrible that they make me cry and I can't even pay attention in school.


That's no way to go about life, is it? I had a similar type of headache for awhile. Oddly, I was also on Depikote and Zyprexa at the time.

Like I said, I'm NOT a doctor...but you might want to consider hitting the reset button. If you have a bunch of white coats around you telling you that quiting the medications your taking could make things worse, consider for a moment this as an idea PURELY as a what if:

What if all those medications you are taking are not addressing what COULD be the real problem?

If you go to a neurologist and explain your symptoms, he'll say it's most likely caused by a neurological disorder.
If you go to a Psycologist, he'll most likely say it's a Pyscological disorder
Many doctors all want to be the "House" and solve all your problems.
They want to be the "healer"
This is something that is starting to change, but not quite quick enough(mho).

The point I wanted to make with this babbling is this...Consider the possibility that MAYBE your narcolepsy is throwing off a lot of symptoms that are making non-sleep professional doctors jump-up and say "TAKE THIS! THIS WILL WORK!"

This was my case, but it doesn't mean it's yours...

Abnormal Sleep Patterns are common (quickly explained as Manic behavior)
Depression (until I got the right help, damn right I was depressed!)
Excessive Daytime Sleepiness (oddly enough got thrown in as a symptom of depression)
Cataplexy (ignored completely while maintaining a high level of embarassment)
Hallucinations (before diagnosed, this got tossed in as a symptom of severe bi-polar disorder...correctly diagnosed, it was a hypnocognic hallucination...VERY different)

Ryan, we spend 1/3 of our lives sleeping if all is well. Keep that in mind.

I have tremors even worse in my hands now. They are so bad that I can't even write using pen or pencil for too long for my hands will shake for at least ten minutes. Otherwise, they are always shaking like I am an alcoholic. I have just started to get tremors in my legs as well. When I walk I sway back and forth, as though I am going to pass out and fall over.

Perhaps the meds are doing this, and not anything that is wrong with you...Please consider this. Maybe your body is wondering, "WTF are you giving me Depikote for? I need to sleep and deal with a sleep condition!"

QUOTE
I have been getting about 3-5 hours of sleep every night, no matter what time I go to bed. When I do fall asleep I feel as though I am not actually asleep, because I can hear everything going on around me and even the slightest noise wakes me. I am always feeling nauseous but I haven't vomitted yet. I've been feeling slower in response and in everything I do.


Agian...for your considertion...maybe your body is saying, "Enough with the Topamax twice daily, I'm trying to deal with a sleep condition here!"

I have been having terrible word block, where I can't remember what word I am thinking of. I am also suffering of severe memory loss. My memory loss is so bad that it is like my day is a dream to me. I only remember about four seconds of what I did that same day.

Ryan, my brother...guess what a lack of sleep can do to you! Everything you just mentioned!

It's the scariest thing ever, because I will only remember about four things I did that day, but not the whole event, just about a second of rememberence or so. I am also not aloud to drive a car further than about ten miles because of my lapses. And last but not least my irritability has skyrocketed. I have had to seperate myself from all of my friends at school, just so I don't snap on them.

People that are not getting enough sleep have a notorious reputation of irritability...You are one of my awesomely smart friends. I bet you knew this smile.gif

QUOTE
If anyone can help please do, I hate being 17 years old and not being able to hang around with my friends or hold a full conversation with someone, because of this.


Personally, my narcolepsy made it clear who my real friends are. The losers laughed at me when I fell down. I'd hear them say "what the hell is wrong with him?"

You ARE properly diagnosed with narcolepsy, right? Sleep tests and Sleep professionals and everything?

This is MY personal recomendation...for what it is worth...

Consider that your Narcolepsy/Sleep condition and your lack of getting enough sleep is actually causing many of what the other doctors are trying to "fix". Perhaps if you had the right medication to address your narcolepsy, your depression would subside, you'd sleep better, your thought patterns would be fluent (and enjoyable as they should be), your anxiety way under control, your headaches under control...and your friends...well, they be the same.

And please know this. You are not broken. There is nothing wrong with you. You just have a condition you are trying to comfortably deal with. The people in this community are the best, and they are here to talk to.

Keep us in touch, would ya? Tell us about how you made life 100% better for yourself! You could possibly help someone else down the road.

-Stu








#4 AssociatedWithFire

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Posted 25 November 2008 - 12:56 AM

Wow Stu's encyclopedic response should let you know a couple of things. 1) He knows what he's talking about. 2) As I have discovered this is a form of sanctuary for those like myself who are scared and need a hand to hold while walking through this strange mire. 3) Before I found this site I cried often when I was alone because I was so....alone. You are not alone.

Should you find yourself near a computer and you want to have a friend to listen please IM me in some form. My info page has several contact ID's and if I am on the computer they are on. actually Im on 3 computers at the same time. 2 laps and a desk top. I am a geek like that. Im usually avalible in36 to 48 hr stints so youll have a good chance of getting me.

you are not alone!

My name is mickey by the way.

#5 mtc

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Posted 25 November 2008 - 09:36 AM

Hi Ryan
I totally agree with Stu. Doctors will keep addressisng symptoms with meds. which can create their own problems. When I first started having symptoms of Narcolepsy in 1981, I started a very long search for a proper diagnosis. Stu is right, depending on the dr. he will dx. you according to his speciality. Don't go to a surgeon if you don't need surgery. I don't remember if you said where you are from, but the first thing I would do is find a dr. who specializes in sleep disorders. Although, I will warn you, in my experience they are not all great. For example, one that was highly recommeded to me, looked at my results and said, "Yes you have Narcolepsy, but I bet part of your problem is your husband doesn't take you out dancing enough." Needless to say I didn't see him again. Also, it sounds like you need to have your meds checked. My sister, who also has Narcolepsy, was overly medicated for a long time. She would get severe headaches and many of the symptoms you describe. In my own experience we have to learn as much as possible about the meds we are prescribed. If it doesn't improve the symptoms why take it? You HAVE to become your own advocate. Learn as much as you can about what you take and find a doctor that will work with you. Don't give your power away!!! And most of all, take advantage of this site. Other people who are going through what you are experiencing are your greatest support. Don't give up, but also remember you can't depend on others to find the magic "bullet" your have to take responsibilty for all this. Where are your parents? are they supportive? This can make a big difference, but then again, you still have to take care of yourself.

#6 mtc

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Posted 25 November 2008 - 09:36 AM





#7 chimbakka

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Posted 25 November 2008 - 11:05 AM

Hi Ryan. I'm glad you found this site everyone here is so great. Im 24 and i was just recently diagnosed with N. High school was aweful for me. I did get through it, but I pretty well just slept and did enough to pass. I just graduated college (just before being diagnosed) and by my last semester I had really bad shaking hands because my body was pushed too far.
Things aren't great for me yet, but they are better than they were.
My point is this: yes, things really suck for you right now, BUT in a few short (and i know from there they look long but to me 17 was like yesterday) years things will be MUCH different, and it will all be a bad memory. You might feel sad then that you don't have more happy memories of being a teen (as I do) BUT at the same time you realize that your life can start whenever you want, and you can make new great memories at any age in your life. I'm not even close to the same person I was then... it's like that was a whole other lifetime, or a distant dream.
If you ever need anyone to talk to you can msn me, it's on my profile page. Sometimes its nice to ahve someone around smile.gif
Hold on, and just focus on getting through each hour, then each day, then each week... before you know it things will be different and you will be well enough to decide for YOURSELF how your life will be, and your health will no longer be in control of how you see who you are.

#8 sleepless sleeper

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Posted 25 November 2008 - 04:05 PM

I just lost a response that I just typed to you, so I'm going to retype. I'm not great at restating, so a bit may be lost in retranslation.

Actually, I am so sorry. I just can't do it right now. This is why I don't edit what I type.

I'm going to go ahead and post this becuase I want you to know that I did come back, and I will again later when I can start over.

In the meantime, would you tell us about your relationship with tyour parents - actually, How your family (including you) works together to cope with the medical issues that you told us about?

#9 Ryan

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Posted 25 November 2008 - 06:30 PM

The relationship I have with my parents is ok i guess. I mean it could be better it could be worse. But it use to be way worse than it is now which is a big plus for me. I use to curse out my mom for the littlest things and now, not including last night, we hadn't fought for probably over a good 3-4 months. As for my dad, me and him have the same problem where if someone raises their voice towards you then you yell back. So the last time I got in my dad's face was about a year ago, and he thrust his forearm in to my neck, and made me black out. That was the last time i ever yelled in his face. Of course, it doesn't help that i'm 6'6" and he's only 5'10". So yeah, i'm just a little terrified of my dad.

#10 shallow_water

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Posted 25 November 2008 - 10:47 PM

Ryan,

I dont have much to say because as you can see Stu put the words so well. I just wanted to welcome you here. I too have had my share of tears and found this place a wonderful sanctuary. Everyone understands the ups downs and triumphs this thing called Narcolepsy has. Hang in there!

#11 too exhausted

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Posted 26 November 2008 - 11:19 AM

QUOTE (Ryan @ Nov 25 2008, 02:41 AM) <{POST_SNAPBACK}>
Hello, my name is Ryan (LAST NAME REMOVED) and I am 17 yrs. old. I am currently in a low point in my life because of all of my medical issues. I have narcolepsy, cataplexy, epilepsy (brain seizures), manic depression, severe depression, and pervasive developmental disorder (PDD). I went through a lot of stuff my freshman and sophmore years of high school. I was put in St. Mary's Hospital, in Chicago for a total of three months in two years. The doctors there thought I had psychosis and was not diagnosed with narcolepsy until I was a junior. I was so depressed that I was doing all sorts of things a minor shouldn't have been doing and some that no person should even do. During the months of October, November, and December of my sophmore year I was drinking hard liquor before school, at school, and after school. I was very depressed and that was the only thing that could suppress my depression, along with my habit of smoking and chewing. Plus with me drinking, I was invited to more parties, which boosted my self-esteem. But I've been good for a whole two years now, until about a month ago. It seems as though my medication isn't even working anymore. I take 100mg of Topamax twice daily, 10mg of Ritilin in the morning, 27mg of Concerta in the morning, 18mg of Concerta in the afternoon, 150mg of Zantac twice daily, and 2000mg of Depakote at night. (I know that my medication give me most of the symptoms that are about to be written but they are far worse, and getting worse even though I am taking my medicine). The worst thing that has been happening to me in the past month is a headache. This is not an ordinary headache it is only on the right side of my head. It started in the back of my head, moved down behind both of my ears, down in to my jaw, under both of my eyes, in to both of my temples, to the right side of my forehead, and then down the right side of my neck. My right eye also feels as though it is closing up, and I've been seeing dots/stars. Now the wierd thing about all of this is that the headache has been nonstop for a whole months time. Lights, noise, and certain foods & drinks set the headaches off, to get worse. The are so terrible that they make me cry and I can't even pay attention in school. I have tremors even worse in my hands now. They are so bad that I can't even write using pen or pencil for too long for my hands will shake for at least ten minutes. Otherwise, they are always shaking like I am an alcoholic. I have just started to get tremors in my legs as well. When I walk I sway back and forth, as though I am going to pass out and fall over. I have been getting about 3-5 hours of sleep every night, no matter what time I go to bed. When I do fall asleep I feel as though I am not actually asleep, because I can hear everything going on around me and even the slightest noise wakes me. I am always feeling nauseous but I haven't vomitted yet. I've been feeling slower in response and in everything I do. I have been having terrible word block, where I can't remember what word I am thinking of. I am also suffering of severe memory loss. My memory loss is so bad that it is like my day is a dream to me. I only remember about four seconds of what I did that same day. What I mean by that last sentence is that at the end of each day I have a feeling of waking up and I'll have no recollection of how I got there. It's the scariest thing ever, because I will only remember about four things I did that day, but not the whole event, just about a second of rememberence or so. I am also not aloud to drive a car further than about ten miles because of my lapses. And last but not least my irritability has skyrocketed. I have had to seperate myself from all of my friends at school, just so I don't snap on them.
If anyone can help please do, I hate being 17 years old and not being able to hang around with my friends or hold a full conversation with someone, because of this.

Hi Ryan,
Hi Ryan,

It usually takes 15 years to diagnoise narcolepsy. In my case it was 26 years. This is because are symptoms are normally diagnoised as something else. Epilepsy, depression, stress, ME, Lupus etc.
By joining the support group you will probably find answers to many of your symptoms. The docs don't have the time to listen to all of our symptoms let alone write them down. But on here we do.
Also the docs don't know everything. I was put on provigil and I complained about it making me depressed up to the suicidal point and that it had effected my contraceptive implant. I was told that this was all in my head. But now it is regonised and a warning has been put out about suicidal thoughts being a side effect. We are only as intelligent as to what we are taught and new things are being learnt all the time. Provigil I would like to add works brilliant for some people.
Try listening to your body regarding your meds. Sometimes meds work against each other and some need to be taken a few hours apart. Its trail and error, I have been on provigil, dexedrine and now xyrem. Its what works for your body. I take St johns Wort for an anti depressant as the pharmacutical ones make me vomit.
Heres a list on things narcolepsy causes.

http://www.network54...few more tweaks

Another good source.
http://adam.about.co.../Narcolepsy.htm

Hope this helps.


#12 Mike M

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Posted 26 November 2008 - 12:07 PM

Ryan,

As many others have said, I hope that you will know that I am thinking of you too. As a high school teacher (and a PWN), I can't imagine how awful it has been for you. You have gotten tons of good advice (much of it from Stu, who is superman!), but I wanted to let you know two things:

1. I thought one of the best things that Stu raised was talking to your narcolepsy doctor. Make sure that she or he has other narcolepsy patients. While you do take a number of meds, I did not see Xyrem on the list. Given your lack of sleep of late, you might want to discuss that.

2. I have a friend who is 20 (I think). He had epilepsy in his youth and now has been diagnosed with narcolepsy. Although he is currently out of the country, I would be happy to try to connect you to him. If you are interested, please send me a PM.

I am thrilled that you found us. Please continue to post. This community is truly amazing and welcomes you wherever you are in the journey that is narcolepsy.

#13 sleepless sleeper

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Posted 27 November 2008 - 12:38 PM

.

#14 sleepless sleeper

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Posted 27 November 2008 - 04:44 PM

I've deleted some from this post -

Hey Ryan, I don't know if you've noticed, but it's usually hard for me to get on the computer and stay on the computer. It's the N, and it's DEFINITELY not you. I wish I could scoop you up and carry you through the next couple of years. I guess you can tell that I'm a mother. After going through my teen and early twenties with N I now know that there is no other way to get through life except to walk through on your own two feet, and even if you did have someone handling everything for you it would do no good for you except cripple the person you have yet to become.

Your family life sounds similar to mine at your age. My mother had her neck broken when I was 14 or 15 and we did not realized it until I was 17, which is when she had the 1st of 3 surgeries. Her neck was pure mush by then. My father was already an eccentric man, some say they believe he was truly narcissistic, but I disagree. By the time that I was 17, he had already been insane for several years. When I was 18, he was diagnosed with a pituitary adnoma (brain tumor w/c enveloped the pituitary), and it had been around for so many years that it was HUGE. I thank God that he had tumors because I don't think I could have forgiven him otherwise. For the most part it was constant yelling like what you're talking about. There are a lot of dynamics that are happening in your household right now. Things that probably even your parents don't understand. I can fully relate to the extreme levels of frustration already in existence because of normal teenage life, but I can also fully related to the terrible stress brought about by chronic illness. I think this is why I went into such an aggressive sport and excelled at it. Of course it was a sport that was not a team sport.

It's a trial to get through life under "normal" circumstances, but add the stress of illness that is not going to go away and it's tough. With your age added into the mix where you are becoming an adult, well, it opens a whole new can of worms. But that's not your fault. It's no one's fault. Just try to remember these things when you do start getting overwhelmed with frustration.