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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #50 on: January 31, 2010, 01:46:41 PM »

As a person on chemo and dialysis I would like to add that I truly truly believe that both these treatments don't have a hope in hell of keeping someone healthy unless the person looks at it with a positive attitiude.  I also take offence at the implication that a person who is not on dialysis somehow can't discuss it. Paul is in this with me hook line and sinker and it affects his life every bit as much as it affects mine.  No, he doesn't do the actual time on a machine, but by God I don't wish having to be the person watching their loved one on it on anyone.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Ladystardust24
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Keep Calm, Carry on.

« Reply #51 on: January 31, 2010, 01:49:03 PM »

Hey   wait a minutie......     being negative is postive........ being mad at certain things is positive.....   it takes all these emotions to make to world go around.......   we Dont want to be happy all the time.......and who wants to fake life......there has been many great changes in my life and in the life of others when dealing with our negative thoughts.......  So  get mad   deal with it  and  be sure to move on and get living life.

I agree with this!

Hey, my recent new quote... "Hell hath no fury like a Russian-Jewish woman scourned" lol.
After my annoying icky break up with my ex, and everything broke out... I felt as a scourned woman, especially after everything went down, I did a little bit to make myself feel a bit better, like maybe letting it slip what kind of adult entertainment my ex likes... because why golly, it WAS computer,and internet, and it was in my history box still...  :2thumbsup; (next time he should really clear the history...  :oops;) And lets just say, not that I am against any of those adult things, what he likes could be considered a wee bit embarrassing,at least to your other manly man friends..and any potential ladies.. So, no I am not Miss Pollyanna everyday of my life, I am of course a true Boston girl, And when we have a redlight/green light/ no light.. We have a long standing proud tradition of yelling at other cars, especially when they got their drivers license in a happy meal.  So no one is obviously always happy. I think It's cool to see how many opinions there are on things... And how people tend to deal and see things differently. I feel you can always take something away from another person, everyone has something valuable to teach you. Like my dad has taught me to always keep an open mind, and to sometimes give people the benefit of the doubt. And my mother has taught me that sleeping with any wealthy eurotrash won't actually make you happy, but it might buy you some designer shoes and boobs. Also lovely motherly advice "don't marry for love,marry for money"  ... Thank goodness I got boobs, and I'm not a shoe girl, and that I disregard whatever she says. ;D

So, I don't go into dialysis thinking they are only nice to me because they are getting paid, Because, my primary nurse didn't have to buy me any gifts for the holidays, or when she went to India with her boyfriend, My primary floor nurse didn't have to sit with me three days straight when I lost my transplant and cried, They didn't have to be there for me rubbing my back when I was sick so many times, and they didn't have to do anything they do,do.. but They.. do. They Don't have to care,but they do. money or not, Believe it or not, Some places, people still really do care about their patients/students/people around them. My own dad who works in the other Harvard hospital for adults, He is a translator, yet.. when his patient was alone and dying he did sit with him, even though he was not getting paid for it. He did this many times. He has done what he really didn't HAVE to do, but because he does care for his patients. In life, You will meet people who do wish you well, and people who don't, you will meet people who are fake and unpleasant... dialysis or not. I don't blame anyone for "hating" dialysis or the long treatments,the restrictions dietary and life... i think its totally normal to get upset over it all.. and if you didn't I'd be frankly quite worried about it. And If you truly feel being upset about it and just letting it all rip all the time.. then by golly, do it. let it out. There has been times When Ive sat with my best friend crying and shouting about crappy guys who lead you on,guys who lied,who told you they were ok with your stuff then ran for the closest exit,family that just doesn't get it,getting a B when you know it was a A paper and the various million other things that can upset a 20 year old woman.. Or anyone for that matter. Fact is, Yep, Our health situation isn't ideal,fun or what we imagined ourselves doing. And I do highly dislike being a walking medical disaster. But, we do it anyways, and we put our best foot forward doing it(mine is my left, but I like to show off my sexy leopard print/self done swarovski crystal bedazzled leg brace, so I tend to try to put my right one forward more now :) ) So for me, I'm going to try to keep my head up, try to stick to my idea that my medical scars,sparkly leopard braces add to my sex appeal rather than look like a Peg Bundy penguin with a limp. And I hope that everyone here will keep on supporting eachother and take good things from each other.

BTW Rerun,I do like your wit, I think your 'tude is witty and keeps firing these boards up!

...and In the meantime, heres a dancing banana, they entertain me so :D  :bandance;
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Dialysis 99-01
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Very grateful for my Ziggy Bean.
dwcrawford
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Getting the heck out of town.

« Reply #52 on: January 31, 2010, 02:11:35 PM »

Oh never mind.  If i say what I'm thinking I'd be bragging.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
Rerun
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« Reply #53 on: January 31, 2010, 03:22:32 PM »

I may just boil down to .....  I lost my court case against the Fitness Club and I'm pissed! 

It did take the wind out of my sails.  I'm now not going to take on the homeowners association who is a a big rip off also.  It doesn't matter I would lose that too.

But, I can still take on DW because sometimes I "think" I win.                 :boxing;

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dwcrawford
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« Reply #54 on: January 31, 2010, 03:30:16 PM »

Yea, I know RR.  Sometimes I think  people don't actually read my posts.  Are they are too long and rambling.  Or just not relative to the topic.

Hey did you post about the Fitness Club and the HomeOwerners
Assc.  I used to be President of our Home Owners Assc and I can tell you we had zero power over what the resident allowed.  My job was basically to get phone calls about weird looking characters in the neighborhood.  And in this neighborhood that was almost every day.
« Last Edit: February 01, 2010, 11:07:22 AM by dwcrawford » Logged

Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
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« Reply #55 on: January 31, 2010, 04:02:27 PM »

First of all let me say: I do not love dialysis.  I never will love it.  I tolerate it and at times hate it with a passion.

I would rather spend my time at the mall
or going out to eat with my husband and family,
or go to the bookstore,
I would rather some nights do anything than go to that dialysis treatment.
But I go every time, because I know without it I am dead.

I also know Epoman started IHD.com because his posts about reality at dialysis were being removed from sites he was on. 
He wanted a place where the reality of dialysis could be seen in its full gory.
The good and the bad of dialysis is discussed on this board every day.
I for one am grateful for it.


I will continue to hate dialysis, even though I know it gives me life.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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Getting the heck out of town.

« Reply #56 on: January 31, 2010, 04:08:58 PM »

I think everyone who has posted here agrees that dialysis is really crappy.  I see nothing in your post, Kit, that anyone would disagree with.  I would like to thank you and Epoman for allowing the rest of us to come and post our own thoughts about the subject.

I don't care for malls. 
But I'd like to go out and eat.
Cute quote in today's paper that says?
A man will spend $20 for a $10 item that he needs.
A woman will spend $10 on a $20 item whether she needs it or not.

Off topoic.  Hit me with a cyber bat.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #57 on: January 31, 2010, 05:35:54 PM »

  I wish I could dialysis today......  :P
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #58 on: January 31, 2010, 08:50:53 PM »

I may be a pretty positive person generally - but even I know that's just silly Tyefly  :rofl;
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
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Just another hamster on the dialysis W.O.F.

« Reply #59 on: February 01, 2010, 10:01:25 AM »

        One of the "good things" about being on dialysis, I got to come here and know you all.   Beleive it or not, I feel my life has been enriched by that.  By the way,  sure I hate dialysis, it is a pain in one of Dan's donkeys.  :rofl; :rofl; :rofl;  but without, I'd have miised out on a lot of things.  I don't like missing out on things. 
        Ladystardust24 , thanks for starting this thread.  It is very good. 
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In center hemo dialysis since Feb 14, 2007. 

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« Reply #60 on: February 01, 2010, 10:40:35 AM »

  I wish I could dialysis today......  :P

When I was doing just 3 days a week, I often felt like this because I felt crappy so I asked for 5 days a week and felt ever so much better.  I always worried about long term damage to the heart and bones etc and I found it difficult to exercise properly until I was getting more adequate dialysis.  If I'd stayed on for longer than the 10 months I did, I'd have asked to spend more than 2 and a 1/2 hours per session too, in order to get better clearance of the larger molecules.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #61 on: February 01, 2010, 10:54:38 AM »

I think it is great that you love dialysis! I care very much for my patients and hope that they know that. Yes the situation sucks, having to do dialysis, but I believe that I can help my patients and teach them as much as they have taught me through the years. Its nice to know that ,as a patient, you appreciate us in this sucky situation.
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tyefly
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This will be me...... Next spring.... I earned it.

« Reply #62 on: February 01, 2010, 07:02:49 PM »

   I went to dialysis today   and I am sure glad that I did..... I feel so much better.....its hard to explain......   I think     no   I know it hard on the body to go two days off of Dialysis......   Just one more week and then I am not going two days off again........  it feel that good...
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
dwcrawford
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Getting the heck out of town.

« Reply #63 on: February 02, 2010, 07:13:58 AM »

I think it is great that you love dialysis! I care very much for my patients and hope that they know that. Yes the situation sucks, having to do dialysis, but I believe that I can help my patients and teach them as much as they have taught me through the years. Its nice to know that ,as a patient, you appreciate us in this sucky situation.

I think lots and lots of the suport team at dialysis think like this.  Thanks for expressing it. 
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
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« Reply #64 on: February 03, 2010, 01:29:28 PM »

Ive read this topic with interest and ..still HATE dialysis ! I find it interesting to read about the relationships between staff and patients ! My unit is a ..THEM  and US ! While most nurses will answer any questions about dialysis , thats about it ! I know their first names and thats about it ! They never interact on a person to person level . Now im not asking them to be my best friend but a little light chat about ordinary day to day stuff would be nice. But no we are kept at arms length , and there is no banter between the patients either ! We might say 'hello' as we go in , but our beds are all placed at an angle where we cant see the upper part of the next person! and to be honest nearly everyone on my shift just sleeps. I did get put near one younger guy one day and we had a real good chat all through the session. It appears that didnt go down well cause we stopped others from sleeping! and we have never been put near each other since! So no i dont 'love' going into dialysis , no its not a social event and i count it a lucky day if i escape some sarcastic comment from the sister on the unit . The past 2 being ...It had been minus 11 here and i had a t shirt on and a fleece, only to be told , god you've got enough layers on !!! Then one day while putting me on she said , watch you phos n pott cause you live on takeaways dont you ....WTF?  you order loads of pizza's. Excuse me i said i dont know who you are thinking of but the last pizza i had was about 12 months ago ! and as for takeaways, hardly touch them.  So no dont expect me to love going into dialysis , its crap , if i had any other choice i would take it ,i do it out of duty , because it keeps me alive. Give me back the solitary of PD anyday , give me back the control of PD anyday and then see me smile !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #65 on: February 03, 2010, 02:47:18 PM »

I think you should look into home haemo Kickstart.  They going ahread with it in England now for people on their own - so maybe it's something you can consider.  You'd be a great condidate cos you were already fine with home dilaysis before.
Is it worth enquiring?
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #66 on: February 03, 2010, 09:07:17 PM »

       KS            I think you should move to another unit.....one that when you go in they are happy to see you ....... thats the way mine was and I bet their are a lot  of them........  MOve  it will be better on your health.......  why continue to do this to yourself.......You are very unhappy......do something different....... something has to change and only you can do it.....

You sound like a strong women.....   take charge......     :beer1;
« Last Edit: February 03, 2010, 09:08:33 PM by tyefly » Logged

IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
KICKSTART
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« Reply #67 on: February 04, 2010, 03:35:12 AM »

I think you should look into home haemo Kickstart.  They going ahread with it in England now for people on their own - so maybe it's something you can consider.  You'd be a great condidate cos you were already fine with home dilaysis before.
Is it worth enquiring?

Already enquired and been told NO WAY because i live on my own !!!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
KICKSTART
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« Reply #68 on: February 04, 2010, 03:37:13 AM »

       KS            I think you should move to another unit.....one that when you go in they are happy to see you ....... thats the way mine was and I bet their are a lot  of them........  MOve  it will be better on your health.......  why continue to do this to yourself.......You are very unhappy......do something different....... something has to change and only you can do it.....

You sound like a strong women.....   take charge......     :beer1;

Sadly we dont get that option over here ! We get placed at the nearest unit to us and thats it !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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« Reply #69 on: February 04, 2010, 05:39:58 AM »

The first step to recovery is admitting you have a problem!

I love dialysis- I hate Kidney Disease

I have been on 2.5 hours X5 Since October, and 2 days ago I asked to be put on 3 hours X5, I have really bad RLS and when my dialysis time increases I don't have restless leg. 

I tell people in my centre that I am increasing dialysis and they think I am insane.  BUT I feel so much better!
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #70 on: February 04, 2010, 03:23:51 PM »

Quote

Already enquired and been told NO WAY because i live on my own !!!

Wasn't there someone esle just the other day in England who was finding out more about this?  Sorry - can't recall the name at the mo.  But he'd found in the small print that it was actually possible?  Dig a bit deeper Kickstart.  You know the people at your unit are likely just to have given you the easiest answer!  Maybe this is something you could get your teeth stuck into - getting home dialysis pushed forward a bit more.

Fixed Quote - Rerun, Moderator
« Last Edit: February 04, 2010, 04:24:45 PM by Rerun » Logged

Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Rerun
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« Reply #71 on: February 04, 2010, 04:26:52 PM »

I think you should look into home haemo Kickstart.  They going ahread with it in England now for people on their own - so maybe it's something you can consider.  You'd be a great condidate cos you were already fine with home dilaysis before.
Is it worth enquiring?

Already enquired and been told NO WAY because i live on my own !!!

We just need to find you a roommate!
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Stoday
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« Reply #72 on: February 04, 2010, 09:14:01 PM »

Wasn't there someone esle just the other day in England who was finding out more about this? 

Here ya go: http://ihatedialysis.com/forum/index.php?topic=17407.0

 :thumbup;
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Diagnosed stage 3 CKD May 2003
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Heart Attacks June 2005; October 2010; July 2011
Ladystardust24
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« Reply #73 on: February 04, 2010, 10:14:56 PM »

I second the roommate thing, and, I think we need to find a nice cute one.. :)

I must say, over 20 years i have had my bout with annoying,ignorant staff.. (my unit is a hospital one, so..its a hospital) So, also as I said, i have been lucky enough to have my dad teaching me the ropes, especially since he does work in the same institution. I also myself tend to be the independent,"feisty" type. So i take no b.s. When they say they don't know and I feel something missing. or they try to be patronizing. I had(more than once, but I will just go with this one time.)

I knew what was wrong.. and it had happened after a procedure, so in order to rule it out, they had to do a CTscan.. the doctor didnt want to.was rude too. And he didnt want to give me a real reason why not do the scan... So i simply told him.

"fine, send me home. BUT. I want you to put it in the chart, that I did ask you for a CTscan, that I told you what I knew it was, but that you refused to do it, and your reason why you refused... I also want your signature and name and your medical ID number and title. Because If something does happen,I want it to my on file that I did tell you I wanted A scan, and I want it to be on file why you denied that. And if something does happen because of this. I will go straight for your medical license."

And of course, he did what I wanted, because who is going to risk their license over a ctscan? yep.. and by the way I was right. And I told him that next time listen to your patients.. and that I have known myself for 20 years, so again.. next time.listen and respect me, I am allowing you to treat me, not someone else, you. So show your patients some respect, because one day, you will be a patient, and who will hope that someone shows you more respect and kindness than you showed me. he did apologize. haha.

So yea, I say. I have told other friends of mine who are new to doing what our parents had done before, and generally anyone else who is annoyed. haha because it does work. And btw if they ask if you are threatening them you simply say 'no. I asked you for certain things because my own health and care is my priority. and you as my doctor did not do what you had to. So no it is not a threat, it is a promise, you screw up, I will make sure you do not do it to another person."  So yes. I am a war general when it comes to my health. haha. I do what I got and take down anyone who is preventing me from winning my battle. be it sickness,or a idiotic resident. :D

(btw when saying the whole thing, remember, make sure it is the ATTENDING that puts down the reason he is denying it, that you did ask for it.. and his information. not a  resident/intern. make sure the top guy takes the responsibility.)

SO yes. mu haha. I'm a little renal russian-jewish napoleon. muhaha. (I still have my KGB-looking/sounding papa, right by my side, if they don't fear me..the definitely fear him. haha. you don't mess with our family members)
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Dialysis 99-01
transplanted 01-04
Dialysis 04-10
Currently Transplant 10-22 +!

Very grateful for my Ziggy Bean.
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« Reply #74 on: February 04, 2010, 10:50:21 PM »

I like you, Ladystardust24!
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Galvo
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