Doctor Says I Have A Neurological Disorder...

[Captain Ice]

Sorry to hear this, Gem.

I think the first thing I'd do is to get as many opinions as possible from as many experts as possible. With a neurological disorder, for example, I would make sure that I talked to a couple of neurologists before I even accepted the diagnosis let alone think about treatment. After confirmation, I would look into the treatments as thoroughly as I could.

As far as people not replying....

1. Nine minutes is a very short time frame, even on the net. I'd only worry about a lack of responses if no one had responded to this thread by tomorrow morning. not everyone is online at the same time, etc, etc.

2. That being said, with news like this it takes most people some time to get over the shock of it and then to compose their thoughts in order to be supportive.

3. Unfortunately, Lindley is correct. The "I'm dying" card has been played more than once here by people who were not suffering from any terminal illness. The unfortunate effect of this is that it takes most of us a little while to accept these kind of statements as fact. This is not just Trekbbs by itself, but the internet as a whole. I'm to the point where if it isn't someone I know off the net, I don't buy it for quite a long while from anyone.

 

[GemHaters]

Sorry to hear this, Gem.

I think the first thing I'd do is to get as many opinions as possible from as many experts as possible. With a neurological disorder, for example, I would make sure that I talked to a couple of neurologists before I even accepted the diagnosis let alone think about treatment. After confirmation, I would look into the treatments as thoroughly as I could.

I am most definitely getting as many opinions on this as I can. My mother is already talking with Doctors all over the United States, so I'm really hoping something comes up.

As far as people not replying....

1. Nine minutes is a very short time frame, even on the net. I'd only worry about a lack of responses if no one had responded to this thread by tomorrow morning. not everyone is online at the same time, etc, etc.

Yes, yes I know...I'm sorry for being that way. I just haven't really had anyone to talk to since finding this out, and I was a little desperate for some kind of response.

3. Unfortunately, Lindley is correct. The "I'm dying" card has been played more than once here by people who were not suffering from any terminal illness. The unfortunate effect of this is that it takes most of us a little while to accept these kind of statements as fact. This is not just Trekbbs by itself, but the internet as a whole. I'm to the point where if it isn't someone I know off the net, I don't buy it for quite a long while from anyone.

Ugh...just the thought of someone doing something like that sickens me. I'll never understand this world or the people in it. Whatever anyone on here thinks of me, I'd hope that you all know I'm far above pulling a sick stunt like that. I seriously questioned saying anything at all, but like I said, I haven't had anyone to talk to at all, and was just looking for a little insight....


That all said, I ask you all one thing...Patience. I've been having some problems with my memory lately, so I apologize if you all find me repeating the same things over and over. Just tell me to shut up if I do so. lol.

 

[Miss Lemon]

I'm so sorry for you, Gem. I hope you have family members and friends to support you.

My advice would be to take some time to think about what is truly important to you and then focus on these things. Also, take up Tora's advice about going to a research medical center.

 

[Tora Ziyal]

.Unfortunately, Lindley is correct. The "I'm dying" card has been played more than once here by people who were not suffering from any terminal illness. The unfortunate effect of this is that it takes most of us a little while to accept these kind of statements as fact. This is not just Trekbbs by itself, but the internet as a whole. I'm to the point where if it isn't someone I know off the net, I don't buy it for quite a long while from anyone.

Some woman in my area was convicted of fraud recently. I don't remember the details, but the gist of it is that she got real-life and online friends to help her pay for treatment for cancer that she didn't really have. Sigh.

 

[MacLeod]

Gems, I'm sure most people can understand the fact that you would like some sort of response quickly. There must me be a million thoughts going through your mind at the moment, and most of us at the very least can empathise with your situation even though we might not be able to fully comprehend it, most of us having no frame of referrence on which to base it on.

 

[Captain Ice]

Yes, yes I know...I'm sorry for being that way. I just haven't really had anyone to talk to since finding this out, and I was a little desperate for some kind of response.

I can understand that. With news like this, it's natural to want to reach out in order to look for people who have dealt with whatever disease it is before and, barring finding any of them, to look for just someone that you can talk to.

Listen to Ziyal. She knows, better than most, how supportive this place can be. There are also others here who have found out how supportive the people in this particular place can be...myself included in that number.

Another thought....maybe one of the doctors/hospitals/universities knows of a support group for people dealing with this disease? If nothing else, maybe seeing a counselor briefly just so you can talk to someone in person about it may help.

 

[GemHaters]

Gems, I'm sure most people can understand the fact that you would like some sort of response quickly. There must me be a million thoughts going through your mind at the moment, and most of us at the very least can empathise with your situation even though we might not be able to fully comprehend it, most of us having no frame of referrence on which to base it on.

I know to some people I've gained the "attention whore" status, though honestly I'm not entirely sure why. My entire life people have developed quick opinions of me and assumed things about me that aren't true. It's kind of upsetting, because I really am a nice, considerate person....I know I come off a bit...well, bitchy at times. It's this horrible defense mechanism I've developed over the years. Deal with enough assholes, and you'd be hard pressed not to act that way. Anywho, it's no excuse and I'm truly sorry for the way that I've acted in the past. I'll try to be more patient and kind in the future(let's hope there is one!)...I really like it here, and I'd like to stick around. If y'all can deal with my super Conservative/Religious ass

By the way, thank you all for your concern, support, and ideas...It really means a lot to me....I don't feel so alone anymore...

Another thought....maybe one of the doctors/hospitals/universities knows of a support group for people dealing with this disease? If nothing else, maybe seeing a counselor briefly just so you can talk to someone in person about it may help.

That's a great idea, I don't know why I didn't think of that before. Thanks!

 

[MacLeod]

Gems we all have our defence mechanisims and I've seen some and posted in some of the threads you are alluding to. And yes some people were less than pleasant with the responses they made.

Some people react with a knee-jerk reaction whilst others take the time to try and understand.

I know it is easy to say but ignore them and try to concentrate on the more supportive ones.

 

[Tora Ziyal]

Another thought....maybe one of the doctors/hospitals/universities knows of a support group for people dealing with this disease? If nothing else, maybe seeing a counselor briefly just so you can talk to someone in person about it may help.

That's a great idea, I don't know why I didn't think of that before. Thanks!

Excellent idea! Websites that have info about your disease may also have lists of support groups and other resources.

 

[Data Holmes]

Sex. Lots of it.
You think I'm kidding or being flippant, but I'm not.

It doesn't even have to be sex, really, (though if it were me, that would be what I'd do), just something you love to do, and do it as much as you can! Get as much out of the life you have left. Try things you never thought you'd try. Don't spend the rest of your life pondering the big questions, they will answer themselves soon enough. Make it count for something for you.

Good post, J.

I would add, don't let it get to you. Negative thinking doesn't help progress healing. My grandfather used to say "You're only sick when you really want to be". Granted he said it in a wise ass, "quit complaining" way when us kids would whine about having to help do something... But there is much to be said to willing yourself to be better.

 

[TEACAKE'S PLEATHER DOME]

I'd get off TBBS.

Yep. Though I might spend some down time when I was really feeling poorly here. Otherwise I would spend every last minute with my family. I wouldn't be interested in going to places I haven't been.. might try a few foods I hadn't eaten though.

I'd probably write long meaningful letters to my family too, and maybe some friends. I also wouldn't get to this state immediately, I'd be the educated consumer from Hell and demand every option available for my treatment.

I'd get my financial affairs in order. I would probably write some apologies.

 

[Vendikarr]

Gem, I'm glad you're getting other opinions. But even if three or four doctors confirm the diagnosis, keep seeing others. Breakthroughs are occurring in medicine all the time, and doctors don't know the latest treatments.

I see people advising you to get off TBBS, spend time with you family and things like that.

What you need to do is figure out the things that make life living for you, be it family, friends, pizza, beer or Star Trek, and then fight for it. Those things.. they are your goal. You win the fight you get to keep having them.

You've made an impact here, and the people here can be very caring and supportive. If you need us, we are here for you. Being a 24/7 community, it may take time for us to respond, but respond we will.

Good luck.

 

[Captain_Nick]

Everyone dies Gems. Maybe - perhaps - it will happen to you soon. If not, well, it'll still happen further down the road. What do you need to do differently? It doens't matter if you are going to die tomorrow or in fifty years. If what you are doing right now isn't satisfying you, stop doing it.

Live your life as you see fit for as long as you can.

But that said, think back to your childhood. Got any old longings, dreams or ambitions? Now is the time for a red hot crack at them.

 

[Captain_Nick]

I am going to be seriously pissed off if this turns out to be a hoax. Remember batlh and her sister.

 

[TEACAKE'S PLEATHER DOME]

I was thinking about the varying things people posted they would do, quite diverse actually. And I'm wondering.. why don't we do these things now? Okay maybe the 10,000 dollar trip is more doable when you only have limited time and people kindly donate money towards it, but even big ticket stuff can be made a priority to accomplish with a loan or budget. And a lot of what people say isn't in that category at all.

I know I've lost a rather (IMO) abnormal amount of friends to cancer and few other things at young ages, 30's to 40's. They all left behind minor children, and a few of them did get the chance to make decisions of how to spend their last months. The decisions were very different. It has certainly given me a perspective on life that I don't think I would have had I think if I hadn't lost so many people and seen in a personal way the fragility of life. It has made me work on and value my relationships now, in the way I think I would if I had a potentially terminal illness. Or as Nick said above, we all do have a terminal condition called life.

 

[bbailey861]

I am taking this post at face value. I am happy, Gem, that you are getting further opinions. This is far too serious not to. Good luck to you.

 

[Squiggy]

I'd get off TBBS.

This. If you're dying, don't waste your final days in this hellhole.

 

[Tora Ziyal]

^Actually, this "hellhole" was very helpful to me when I was seriously ill. I could escape from the misery of my real life, and people were incredibly supportive. If I were terminally ill, I would not totally stop coming here.

 

[Squiggy]

True. I'm going with terminally ill though. Seriously ill is one thing.

 

[MacLeod]

With regards to coming to TBBS or not, it's down to the enjoyment factor.

You have to do things you enjoy doing.