Off-Topic Forum

The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Kimmer's picture
Replies 1
Last reply 8/1/2010 - 10:49am
Replies by: Carver

Hi Everyone,

I grumble about doing the P90X workouts all the time, but in reality I do love 'em.  This article came from one of the newsletters and the blog that Tony Horton, the workout guru and instructor in the videos, sent out.  It really got me thinking, so I just wanted to share.  Not sure I can actually put it to practice, but I have often wished that I had all of the time back that I have spent stressing and sweating the small stuff....

Take good care, K.

STRESS

Do you realize that if you took the fear and anxiety out of every "stressful" situation in life, the end result of that situation would greatly improve? You can panic and freak out all you want, but time will still pass and life will happen, whether you stress out about it or not. So why not choose patience or curiosity? Patience is a virtue, and who wouldn't want to be virtuous in a stressful situation? To be curious means asking the right questions to help find solutions. When does fear, worry, or anxiety ever help a situation? Stress occurs when we are incapable of moving through a situation logically, peacefully, positively, productively, and gracefully. It take a lot of energy to be stressed out. Allowing stress to overtake you means you're having a tough time dealing with reality. Don't let stress get your goat. Stand up, take a deep breath, and see if you can deal with reality under pressure. I like the parable about the 10 people standing in line at a bank. Three robbers come storming in—screaming, yelling, and waving guns around. They terrorize the place and steal everyone's jewelry and money. What's the moral of the story? Ten people experiencing the same event will have very different reactions to it. Some will never recover, while others will have a crazy story to tell at cocktail parties. How do you respond to the events in your life?

I like Byron Katie's 3 Kinds of Business Theory:

  1. God's Business. The things that happen in this world that are out of my control.

  2. Their Business. The choices other people make based on their life experiences so far.

  3. My Business. The choices I make that shape my life.

Don't waste your time on gossip, ridicule, envy, self-pity, anger, guilt, arrogance, impatience, regret, manipulation, jealousy, fear, worry, and anxiety. It's too stressful, and it destroys the energy you need to stay healthy and fit. If you choose understanding, truth, clarity, patience, devotion, gratitude, acceptance, wisdom, and forgiveness, you will have peace of mind and all the energy in the world to do whatever you want.

from Tony Horton's Blog

And remember, no matter where you go, there you are. Confucius

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Anonymous's picture
Replies 9
Last reply 8/3/2010 - 4:07pm

BG here.  Heard so much about the "new" board.. hadda come check it out.  All I can say is.. yikes.  This ain't the board I'd gotten use to the last 9-1/2 years!

Just a lil update for my old friends, and I'm not using names for a reason--(family crap):  After much tutoring, frustration and such, the 2 oldest girlies passed school last year and will now be in 4th and 6th grades.  The "baby" will start Kindergarten!  Nooooo.. I'm not feeling old, much!

The oldest broke her hand last week after she fell off the back of a 4-wheeler in my home state/town.  I've been 'there' all summer looking after mom, who isn't doing very well.  She had a mild heart attack last week, but is home and doing as well as expected.  Docs don't think she'll be around much longer, but they ain't God.  We'll leave that up to Him.  I came home this week to get the girls registered for school and get "A"s hand looked at and x-rayed; headed back tomorrow for 3 weeks.   Mom's had a rough year so far.  The first of the year, she spent 6 weeks in the hosp. getting arteries rotor-rootered and faux arteries put in.  Was in 2x more for breathing problems, then was AT the hospital when she had the heart attack.   We'd been to the doc who'd sent her there for a doppler on her legs, then we were supposed to meet doc in ER afterwards to go over tests.  While in ER, she was in the process of having the attack.  I guess if you're gonna have one.. the hospital is the best place to be!

The reason I'm not using names is because of certain family members who are now DEAD to me, though they're alive and breathing.  I found out they had been embezzling/manipulating mom out of a LOT of money.  I ain't talking pocket change---THOUSANDS of dollars, possibly up to or above 1/2 million$$.  Still getting facts and figures and organizing them.  I'm going after them on criminal and civil charges, and let's just say it's been a friggin' blast..NOT!   It's a real pisser to find out kin-folk you've loved and adored all your life aren't what or who you thought they were.  I ask, respectfully, that you NOT refer to me by my real name if you post any replies.  BG will do just fine, or don't use any name at all.  Better yet, don't reply! haha!   I ain't gonna be around for awhile to see it anyway, but others "COULD".   I admit, I doubt they've ever been to this place, but with the way my luck's gone lately, they could be lurking to see what I post to try to use against me in the future.  I'm GONNA win this war for my mama---I have truth, facts and credible witnesses on my side.  They have nothing but lies (and a lot of $$$).  

Since all this landed in my lap (I didn't go looking for it---it found ME), I've been stressed to the max.  I HOPE it's only stress.  I have started slurring my words, saying words backwards or the wrong words (just like when I did interferon).  I just had a clean brain MRI in December, but my onc. wanted me to have another in June---I had to politely decline because I had to take care of mom.  I've noticed a couple of BIG lymph nodes right above my arm-pit (right side) that aren't going away, and a tumor-like something in my right foot (between the pads).  I'm not (too) worried, but will be having all scans again in late August.  My mom doesn't know and I don't want her to find out.  She's got enough to deal with.  She has COPD, congestive heart failure, and a severe curvature in her spine that ain't helping.  She has her bad days, and her worse days.  Today's a "worse" day.  I've hired an LPN who's been a dear friend all my life, and whom I trust completely, to sit with her 24/7.  Thanks to the nasty kinfolk, if mom lives 2 years, she's gonna be broke.  (Dad had her set for LIFE and all the kids, too.)  It's damn hard to sit and watch your mother suffocate.  Please pray her last days won't be filled with suffering.  She's grieving over a child lost to money/greed.  She's already lost one child to cancer. 

Gotta run get thru packing.  All my best to you all. *hugz*  

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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bcl's picture
Replies 7
Last reply 8/3/2010 - 4:01am
Replies by: bcl, Janner, Carver

sure they let us know how many people are reading. But for a severely ill patient it could be agony to post and see 20- 30 -40  viewers and not hear a peep.  In the past I've seen posts about bleeding mets sit around for a long time..   seeing readers and no replies might add to the feeling of helplessness.  

 

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bcl's picture
Replies 2
Last reply 7/31/2010 - 7:03pm
Replies by: bcl, Carver

 

I loved this feature of the old board; it added clarity on the main board and humour OTB
Questions (related or otherwise) are often asked within a thread by patients, these can be overlooked if not for others changing the subject line to draw attention to the post. One thread could efficiently accommodate multiple concerns.
 It seems to me this was not a frivolous feature, but one that enhanced communication -a worthy goal on a cancer board.

 (Posting this here to avoid crowding the main board, but I see it primarily as a main board concern.)

 

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jag's picture
Replies 10
Last reply 8/2/2010 - 8:27am
Replies by: Kimmer, Anonymous, Nad T, bcl, Carver, jag

 If you see a post by somebody you don't like, you can push it off of the page, by responding to all of the posts around it, then it will just disappear.  Doesn't work if that person is in another thread.  

Insert Generic Inspirational Motto Here

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Bonnie Lea's picture
Replies 1
Last reply 7/30/2010 - 5:38pm
Replies by: Kimmer

so my brain is working but mayhap too much.  I only want to show one pic-a-chure not the whole thing.... (only six) but still)  I shall try again another time.  Don't worry I won't drive you all totally insane, but I am like a bear with a sore backside or a mean dog (is there such a thing?) with a bone to gnaw on.

Just Keep on Hanging In

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KyCyn's picture
Replies 2
Last reply 7/30/2010 - 5:23pm
Replies by: StanN, Kimmer

Every single time I log in, it doesn't recognize my password.  Every. Single. Time.

So I hit 'forgot password,' I get sent a link to create a new one, I put the password in, put the code in, hit SAVE, and we're good to go.

Until I log out and try to come back again.

Could this have anything to do with 'cookies?'  (and don't laugh if that's a ignorant question, or at least laugh quietly!).

The reason I think that is because I believe the 'cookie' disable thingy is on my work computer...

 

Cyn

 

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Bonnie Lea's picture
Replies 1
Last reply 7/30/2010 - 5:33pm
Replies by: Kimmer
Just Keep on Hanging In

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/30/2010 - 4:19pm
Replies by: Bonnie Lea

Dancing skeleton puppet

http://www.youtube.com/watch?v=1WpD7i4RxnY

 

 

And remember, no matter where you go, there you are. Confucius

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Kimmer's picture
Replies 2
Last reply 7/31/2010 - 8:59am
Replies by: Kimmer, jag

Hey John,

I just read your profile.  I really didn't know that you have been through much.  Sure glad you are here!

My son recently took a bad fall at work and has suffered his second subdural hematoma.  Luckly this time did not require surgery, but his brain injury is more severe; cumualtive damage to left frontal lobe.  We are happily getting him back up to speed without so much thrapy this time and it looks like he will be able to return to his normal life. 

He was originally give Dilantin for the first head trauma.  That was 10 years ago for the subdural hematoma which was evacuated; craniotomy, coma, whole 9 yards; he took the Dilantin with no ill effects for 4 years and was given the green light to discontinue it..  His latest anti-seizure med was Keppra.  He kind of languished for 8 days making no real progress cognitively even though the CT scans showed that the trauma was resolving.  No EEG or MRI was ordered.  I asked for them to put him on Dilantin from the beginning because I knew that he had no problems with it before, but what do I know?  They liked Keppra better, no blood serum levels to check, less bad for the liver, etc.

At day 9 after the injury, he became very disoriented, could not follow simple commands, and was speaking gibberish (aphasia).  It was horrible.  Neurosurgery had been following his case and they were wringing their hands, psychiatry requested an EEG, neurosurgery said NOPE, so Psychiatry called in Neurology who said that he was having non-convulsive seizures and ordered an EEG.  The EEG confirmed this and low and behold he was given IV Dilantin and a bunch of  IV B vitamins (Rally Pack).  He was coherent but sleepy in 4 hours. 

Either he is in the 1% of people who have severe adverse reactions to Keppra or it did not control the seizure activity.  (I still question why an EEG wasn't done as soon as possible.)  I noticed in your PatNet that your seizures became worse on Keppra.  Are you still taking it?  Do you have any 'insider info' about the medication.  The folks at the hospital were a little mute about it...I guess I had pitched a bit of a fit early on about the Dilantin.

I would appreciate opinions or findings on this medication.

Many thanks, K.

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TinaR's picture
Replies 21
Last reply 7/31/2010 - 7:14pm
Replies by: bcl, jag, TinaR, Anonymous
 
 
I can't handle these changes in  my life...I come to the board and it's like operating inside a kaleidoscope.  I feel so shrieky, nasty and awful about this...I will stop until I can control myself.

 

 

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Kimmer's picture
Replies 1
Last reply 7/29/2010 - 9:12pm
Replies by: Carver

Testing a link for photos....

 

http://i316.photobucket.com/albums/mm352/floridogz/P3010105.jpg

Full sun Beagledogz.  I tried sunscreen on their noses, but they just lick it off.

Y'all take good care, K.

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jag's picture
Replies 2
Last reply 7/30/2010 - 3:59pm
Replies by: Bonnie Lea, Yawn

 Sorry, somebody had to do it.

John   

Warm fuzzys, hearts and smiley faces to everyone.  The new board is like heaven. 

Insert Generic Inspirational Motto Here

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Bonnie Lea's picture
Replies 6
Last reply 7/29/2010 - 9:03pm
Replies by: Kimmer, jag, Anonymous, Bonnie Lea
Anonymous's picture
Replies 7
Last reply 8/1/2010 - 2:57pm
Replies by: DonW, Anonymous, Carver

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