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Remission

I may have achieved remission as of sometime between last fall and now. This doesn't mean that at any time it can't come back... Screaming and burning as it does. But it does mean I have a little more time to work hard on things for now. But one of those things, is my desire to encourage people to learn and know about it. Because RSD/CRPS is REAL... It's agonizingly painful.

Unfortunately, one problem that has arisen in my search is apparently I have lyme disease. I am treating it now and being very cautious to successfully put it under control. But I have to admit, this is probably as bad as the RSD was in the beginning for me, and is slowly getting better. But I cannot express how agonizing last fall was.
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Naanad.com
Top 10 Things You Should Not Share on Social Networks PDF Print E-mail
Written by Charles W. Bryant   
Sunday, 04 October 2009 14:17
Unless you've been living under a rock in 2009, you know that social networking Web sites are the latest and greatest way to interact with other users on the Internet. Thirty-five percent of adults on the Internet now have a profile on at least one social networking site, and 51 percent have more than one. Three-quarters of users between the ages of 18 and 24 have an online profile [source: USA Today]. The Pew Research Center found that 89 percent of these people use the sites to keep up with friends, 57 percent to make plans with friends and 49 percent to make new friends.

Facebook, MySpace, LinkedIn, Friendster, Urban Chat and Black Planet are just a few of more than 100 Web sites connecting folks around the world who are eager to share their thoughts and feelings. But just like in real life, there's such a thing as sharing too much information (TMI). It's easy to get caught up in the social aspects of sites like Facebook, but what you choose to share is there for all to see if you don't limit who can view your information. The same study by Pew Research found that 40 percent of users have open access to their profiles, allowing anyone to view their information. The other 60 percent restrict access to friends, family and colleagues. Sharing personal information with strangers can be dangerous business, and there are some things you should definitely put on your "do not share" list. We'll go over 10 of those items in this article.

 

10: Personal Conversations

On Facebook, users can send personal messages or post notes, images or videos to another user's wall. The wall is there for all to see, while messages are between the sender and the receiver, just like an e-mail. Personal and private matters should never be shared on your wall. You wouldn't go around with a bullhorn announcing a private issue to the world, and the same thing goes on the Internet. This falls under the nebulous world of social networking etiquette. There is no official handbook for this sort of thing, but use your best judgment. If it's not something you'd feel comfortable sharing in person with extended family, acquaintances, work colleagues or strangers, then you shouldn't share it on your Facebook wall.

9: Social Plans

Sharing your social plans for everybody to see isn't a good idea. Unless you're planning a big party and inviting all the users you're connected to, it will only make your other friends feel left out. There are also some security issues at stake here. Imagine a scenario where a jealous ex-boyfriend knows that you're meeting a new date out that night. What's to keep the ex from showing up and causing a scene or even potentially getting upset or violent? Nothing, that's what. If you're planning a party or an outing with a group of friends, send a personal "e-vite" for their eyes only and nobody is the wiser. If you're trying to cast a wide net by throwing out an idea for a social outing, just remember that anyone who has access to your profile sees it.

8: Linking Sites

With 51 percent of social network users taking advantage of more than one site, there's bound to be some crossover from one to the other, especially if you have the sites linked. You may post something you find innocuous on Facebook, but then it's linked to your LinkedIn work profile and you've put your job at risk. If you link your various profiles together, be aware that what you post in one world is available to the others. In 2009, a case of an employee caught lying on Facebook hit the news. The employee asked off for a weekend shift because he was ill and then posted pictures on his Facebook profile of himself at a party that same weekend. The news got back to his employer easily enough and he was fired. So if you choose to link your profiles, it's no longer a "personal life" and "work life" scenario.

7: Company Information

You may be dying to tell the world about your new work promotion, but if it's news that could be advantageous to one of your company's competitors, then it's not something you should share. News of a planned expansion or a big project role and anything else about your workplace should be kept private. Sophos, a security software company, found that 63 percent of companies were afraid of what their employees were choosing to share on social networking sites [source:ReadWriteWeb]. If you want to message it out, be selective and send private e-mails. Many companies are so serious about not being included in social networking sites that they forbid employees from using sites like Facebook at work. Some IT departments even filter the URLs and block access to these sites altogether so employees aren't tempted to log on.

6: Photos of Your Kids

Social networking sites are a common place for people to share pictures of their families, but if you're one of the 40 percent of users who don't restrict access to your profile, then those pictures are there for everyone to see. It's a sad fact, but there are a lot of predators who use the Internet to stalk their prey. If you post pictures of your family and couple that with information like, "my husband is out of town this weekend" or "little Johnny is old enough to stay at home by himself now," then your children's safety could be at risk. Nobody ever thinks it will happen to them until it does, so safety first is a good default mode when using social networking sites. Just like with other private matters, send family photos only to a select group of trusted friends and colleagues who you know won't share them.


5: Your Address and Phone Number

File this one under security risk. If you share your address and phone number on a social networking site, you open yourself up to threats of identity theft and other personal dangers like burglaries. If you post that you're going on vacation and you have your address posted, then everyone knows you have an empty house. Identity thieves could pay a visit to your mailbox and open up a credit card in your name. Burglars could rid your home of anything of value. Even just posting your phone number gives people with Internet savvy easy access to your address. Reverse lookup services can supply anyone with your home address if you can provide the phone number.
 

4: Personal Finance Information

You would think that nobody would share things like where they do their banking or what their stock portfolio looks like, but it happens. Especially with all the headlines of banks going bankrupt and stock prices plummeting during the 2008/2009 recession, it's easy for an innocent Facebook comment to reveal too much about your personal finances. Consider this scenario: You're posting to a long thread on a friend's wall about the bank crisis. You say something along the lines of, "We don't need to worry because we bank with a teacher's credit union," or even, "We put all our money into blue chip stocks and plan to ride it out." Again, if you're one the 40 percent who allow open access to your profile, then suddenly identity thieves know where you bank and where you have the bulk of your investments. It's easy to forget that what may seem like a harmless comment on a Facebook wall could reveal a great deal about your personal finances. It's best to avoid that kind of talk altogether

3: Your Password

This one really seems like a no-brainer, but if it didn't happen, then Facebook probably wouldn't feel the need to list it in the No. 1 slot on its list of things you shouldn't share. Even sharing the password with a friend so he or she can log on and check something for you can be a risk. This is especially true with couples who feel like there's enough trust to share these kinds of things. Here's another scenario for you: You give your boyfriend your Facebook password because he wants to help you upload some vacation photos. A couple of months later, the relationship sours, he turns into a not-so-nice guy and then there's a person out there who doesn't like you and has your login information. Time to cancel your account and get a new one. If you'd have kept that information private to begin with, you could simply move on with your life. Now you have a compromised profile, and if you link to other sites or profiles, all that information is at risk as well. Keep your password to yourself, no matter what, and you never have to worry about it.
 

2: Password Hints

Most Web sites that contain secure personal information require a password also have at least one password hint in case you forget. It typically goes like this: You sign up for something like online banking and you get a login and password and then choose a security question for when you forget your password. What's the name of your first pet? What's your mother's maiden name? What was your high school mascot? What's the name of the first street you lived on? Including any of these details on a Facebook wall or status update may not seem like a big deal, but it could provide an identity thief with the last piece of the puzzle needed to hack into your bank account. Think before you post anything that could compromise this information.

1: Anything You Don't Want Shared

You can select all the privacy settings you want on social networking sites, but the fact is, if you post it, it has the potential to be seen by someone you don't want seeing it. You know all those fun Facebook applications, quizzes and polls you can't help but fill out? A study performed by the University of Virginia found that of the top 150 applications on Facebook, 90 percent were given access to information they didn't need in order for the app to function. So when you sign up to find out what sitcom star you most identify with, the makers of that poll now have access to your personal information. It's anybody's guess where it goes from there. Social networking is all about sharing, so something you think is in confidence can easily be shared and then shared again, and before you know it, someone you don't even know has access to something private. "When in doubt, leave it out" is a good motto to follow. And always remember that anything you share has the potential to be leaked in some way.

 

Bryant, Charles W.  "Top 10 Things You Should Not Share on Social Networks."  01 July 2009.  HowStuffWorks.com.  04 October 2009. 

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Last Updated ( Sunday, 06 December 2009 20:52 )
 
Something to Ponder PDF Print E-mail
Written by Langel DeKock   
Tuesday, 04 August 2009 10:38

When you woke up this morning did you ever think, "Man, Dads going to die today, maybe I should tell him I love him?" Or maybe your best friend are fighting because your ex choose him over you. So he dies this afternoon in an accident at work. Do you think it was worth knowing you and him hadn't talked in a couple days all because of her? Or how about her? How do you think she would feel knowing you two hadn't spoken because of her?

Emotions are strong, very powerfully compelling things. But so often we let them control or ignore them completely.

We, most people, choose to set aside saying how we feel to keep from addressing how we feel. Not just because we want to avoid hurting others, or admitting to others how we feel, but the fact that many of us don't want to admit how we feel because it is awkward or hard to accept maybe putting things aside and being happy for others is the best path.

Please think of all those who you love, all those who mattered in your past... Do you miss them? Do you wish you could tell them how you feel? If yes, then do it.
bloodrose
Yeah just maybe you would have told your friend goodbye because you really don't like your ex.. But at least you would know you were honest with how you feel. Sometimes enough goodbye's will allow someone to realize someone who is bad for them. Sometimes enough "I love you's" can make someone who hurts feel better. Sometimes being a friend in the truest form, can change another person's life.

No, this isn't a forward. This is just one thing I wanted to give to you, my friends. If you choose to share, please do feel free. While you are at it, please tell them Naanad says they wish them well also.

Maybe a little positivity in this world will make up for all the negative things going on around us.

 

Written for my Death and Dying class in 2007. This has been a very wise change to the approach I have with my life. I have also had people refer people to the "http://www.naanad.info" where this is the main page for my "about me" site, as that is is a true and very real meaning for those who know of it.

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Last Updated ( Tuesday, 04 August 2009 10:41 )
 
There's Always a Time to Die, Rarely Time to Live PDF Print E-mail
Written by Langel DeKock   
Monday, 23 March 2009 08:46

 

“I'm dying!?!  Wait, is he sure its brain cancer?  Is there anything else it could be?  I need to see for myself.  I need to get home and get online.  What symptoms should I have?  What symptoms am I displaying?  Heck is there even enough symptoms to be sure I have it and not something else?”  These are all things that I need the answers to before I can count on the doctor telling me anything viably true.  I'm not unfamiliar with the capabilities of doctors making misdiagnoses.  “OK, let’s see, if I have fewer than 50% of the symptoms, it’s time to visit a second opinion.  Heck, even if I only have 50%, I'm going anyway.  Anymore than that; I've got to think.”

I’ve spent the rest of the afternoon reading, understanding the causes, the treatments, and the likely side effects of treatment or no treatment.  I can handle the nausea, and even the headaches. (WebMD 2005)  After the RSD & Lyme disease, I can take just about anything.  Not to mention, I’m already half deaf, I know I can read lips well enough I can really pick it up if I need.  But I just can’t do put Joe through it… To watch me waste away and risk dying anyway; RSD would only complicate the changes.  Comfort care is the only viable option I can do. 

 I've never liked pain, at least not inflicted by outside forces.  I mean I have always had an amazing pain tolerance to my own bodies pain, just not to needles or treatments delivered by doctors unless I'm put under.  The radiosurgery (Mayo Clinic 2008) seems the safest but I really don’t want to have the RSD in my BRAIN! I mean the options the doctors are offering are a nice thought, but they are just going to just be too much for me.  Even if I recovered from this, and didn’t have the RSD migrate, the pain I would go through would likely still leave me debilitated.  Not to mention what it would put my children through, my loved ones.  I just don't feel that the chance of recovery from this outweighs what I’m likely going to have to relive daily if the cancer doesn’t get me.  Nor the fact that, that’s ONLY IF they get all the cancer the first time.

I spend the next few hours thinking, “How am I going to tell Joe?”  I get to thinking of how he has dealt with others deaths.  At first he did so well, and the depths to which he feels the sorrow of their being gone.   I can’t leave him hanging and not let him know the truth.  It’s not like we haven’t spent hours we discussing death, and what happens, and even my own death.  I choose to go somewhere special, somewhere we some great times and give him a way to try and enjoy this.  When I was pregnant I used to go to the park where his dad takes him now regularly in his home town, but unfortunately I can’t handle the drive anymore because of the pain.  So I decide to go to the park here in Cedar Falls on Franklin.  He loved the one just north of Main and First Streets, but the floods of 2008 really did it in.  For Joe’s sake, I ask his dad to come down to help Joe through this with me, because with me gone, Joe is going to depend on him a lot more now. 

I break it to Joe gently asking him if he remembers swinging with me and I tell him about what I did that fall before he was born.  I talk about how we all are born and remind him that we all die.  That is when I let him know that the doctors feel that I am going to be leaving him soon and that I want to spend extra time with him doing things he enjoys, like when I went swinging with him all those years go before he was even born.  Dave's trying to soak it in.  He has known that with my RSD so much has happened to stop my ability from doing things, but it really hasn’t him that soon Joe will be in his care for the rest of his adolescent and teen life.  My being able to be alive was the last thing he thought RSD would stop me from doing.

I express to Joe that as I get sicker, dependant on how his dad feels, any schooling he needs to do might be best done at his dads.  I want to see him every waking hour I can but he knows that we all have to make our mark in history and life, and it’s much easier to do that if we are educated.  But I make it very clear that if he wants to stay with me, he must promise me to do his homework and not try to take care of me all the time because there will be people to help with that.

I also take this time to explain that my body won't always look like I do now.  I will get tired more often, my skin's color will most likely change, and I will still hurt, maybe even more so.  But no matter what I am still myself inside, even if my body limits me.  I also let him know that I know he’ll be sad, just like the person was in “Seven Choices.”(Harper Neeld 2003 1) I give him my copy from when I took my class in college.  As something to help when I am gone, and to help him know I’m always with him.

Many times Joe and I have discussed that life only ends when we let it, and that as long as he loves me, then I will live forever.  In the past, I have known some very vivacious elderly and some very dead youth.  Our family and our friends keep us alive as long as they remember what we taught them and gave them throughout the time they spend with us.  It would be now that I would finally become more honest about what I believe, because what do I have to worry about, someone killing me for being too outspoken? 

Personally, what little faith I have has led me on a path to learn about belief and religions in general, to try and find answers according to whatever omnipotent being there might be and to live life that way.  One of those things I have come to believe that the way we are, we act, we think is bound to the soul/spirit.  And one of my greatest fears is of being trapped, my spirit bound to my body in which I could no longer do the one thing I live for.  I desire to bring a genuine smile to someone's face every day.  Being in a place where I could not interact with others; that would be worse than any torture hell could devise.

After telling Joe, I break the news to my father and mother; they try handle it as best they can, but I can tell it hurts them deeply, especially my mother.  I let them choose to break news to the rest my family, I let my brother and close friends know.  It is these people whom have been there through the rough times, standing by me through the pain of the RSD, that I owe them the information in person.  So I ask them to come over for dinner to discuss the philosophy of life for an opening break it to them.  For those at a distance, I attempt to at least do it over the phone so I could comfort them in some small way.

Time moves along and I start to become weary of life, the pain would steepen, amplified by the RSD.  At points I feel life is worth living and again consider suicide again or even assisted suicide.  As I have so many times before, considered them both for present and future means, I remember that even if we don't enjoy my life, we are going to die, so why rush fate.  Even now I still believe everything has a reason it happens, even if it doesn't make any sense now, those events have a place in history, unknown to future generations or not. 

I try to keep a diary from the day of diagnosis till my death of the love, the joys, the pains, and the tears.  I want my family to know the depths I love them and this book gives that to them.  I have already "died" once, the second time around isn't so scary. 

 

I have neither given nor received inappropriate or unacknowledged aid on this assignment, nor have I witnessed any such violation of the University or the Class Ethics Policies.

 

Brain Cancer Symptoms.  10 Aug.  2005.  WebMD.  1 May 2009 <http://www.webmd.com/cancer/brain-cancer/brain-cancer-symptoms >.

Brain tumor Treatment and Drugs.  15 May 2008.  Mayo Clinic.  8 May 2009 <http://www.mayoclinic.com/health/brain-tumor/DS00281/DSECTION=treatments-and-drugs >.

Harper Neeld, Elizabeth 2003, Seven Choices, Centerpoint Press, 1st ed. 

 

This paper is based on the concept that I have been given 6 months to live by a diagnosis of "brain cancer." I am to write what I feel about this and what I would do from there on out. Some people may be upset by what I wrote, others may agree. But the fact of the matter is, THIS is a fundamental part of who I am and I'm not going to apologize to anyone for feeling this way. We all have our reasons for our beliefs, and I hope you can be as proud of your as I am of mine.  

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Last Updated ( Monday, 01 June 2009 11:59 )