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larry781
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« on: June 16, 2007, 09:51:42 AM »

What was the worst thing to happen to you, either by your own condition or the actions of others, at work or in public?

Here are the two things that have happened to me:
I don't hide my illness, I don't voluntarily discuss it, either

As a lab manager at an urban college, a lecture almost daily to students, staff and faculty. I had overshot my dry weight earlier that morning (an absolute rarity with our charge nurse) and was headed to work on this particularly hot and humid summer afternoon. My first business of the day was to lecture to about 40 professional staff members on elementary database design. About halfway through the talk, I felt myself getting very weak. I then started sweating profusely and slurring my speech. I could only imagine what this looked like, and I did: it looked like I was drunk. Finally, after wrapping things up, I told the class, with great hesitation that I was actually not drunk, it just looked that way since I had a dialysis treatment a few hours prior. When I heard the collective gasp and saw the shocked expressions, I knew I should have simply offered the group a cocktail instead.


On one other day, I was in the stately college library doing some research. It was a crisp Fall day and I had treatment earlier that morning. My access seemed to be annoying me, and I was scratching at it all day, usually without taking my eyes off the material I was studying. At one moment though, I felt some dampness on my leg: I was drenched in my own blood!
Stopping the bleeding was easy (as we all know), I simply took out my hankie and held it over the entrance wound. Walking through a cavernous, crowded library soaked head-to-toe in my own blood would be considerably less so (PSYCHO KILLER!! RUN! RUN!). Fortunately, I had my rain coat, which I slipped on before making my mad dash to the door, across the stretch of  the building and 3 floors down. Of course though, as is always the case when I walk across campus, I was tested with a gaunlet of students with questions, colleagues with greetings, and the wife of one of my assistants who wanted to thank me for the baby shower gift I gave them. So, now, here is a 6'4" 250 pound man, running through the library covered in blood, shouting out "call me tomorrow" to anyone blocking his path.
Out the door, straight to my car, and then home.
Yep, just another day of an ESRD patient.

Larry from Long Island






EDITED:Moved to work topic-kitkatz,moderator
« Last Edit: November 11, 2007, 07:34:21 PM by kitkatz » Logged

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LightLizard
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« Reply #1 on: June 16, 2007, 10:47:22 AM »

that's heavy duty larry. personally, i share any and everything about my condition with whoever asks. i think the general public needs to be more aware of what we go through and what dialysis is about, for their own good and ours, too.
i don't even hesitate to tell people that my condition is due to hep c, which i aquired from a blood transfusion in 1951, regardless of the stigma of needle-users and druggies connected with it.
you are lucky to still have enough energy to work at something you love, that's for sure!
myself, i avoid public gatherings as much as possible, now, and restrict my outings to short walks.

love

~LL~
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st789
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« Reply #2 on: June 16, 2007, 02:21:56 PM »

That is tough.
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« Reply #3 on: June 16, 2007, 07:43:16 PM »

What was the worst thing to happen to you, either by your own condition or the actions of others, at work or in public?


Thanks to the diabetic gastropareisis, I can lay claim to having a sudden onslaught of projectile vomiting while sitting on the grass in front of the band shell, surrounded by a mass of people trying to enjoy a concert.  I had my then 3 year old nephew with me, and he was completely hysterical when I started puking.  I was so weak after that I could hardly walk, and I was trying to calm him down, get him in the stroller and wobble back to the car, while a couple hundred disgusted people tried to avoid making eye contact.  Not a single one offered to help.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Adam_W
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« Reply #4 on: June 16, 2007, 08:06:39 PM »

The evening after I had my (unsuccessful) fistula surgery, I was feeling decent enough to go to the Wednesday evening service at my church, and about 10 to 15 minutes into it, I suddenly got very nauseous, and about 30 seconds after that I lost all strength and collapsed out of my chair onto the floor. The pastor's son picked me up like a football and carried me into the foyer of the church, and an ambulance was called. I spent most of the night in the ER, and it turned out my blood sugar was dangerously low, and I was having some kind of bad reaction to the anesthetic I had received during the surgery that afternoon. A few weeks ago we had kind of an unusual incident that was some what related to what happened that evening. When a bunch of us arrived at church on Sunday morning, there was an old van in the parking lot, and there were two guys who looked like they were passed out in it (They turned out to be homeless guys living in their van, and they were incredibly nice and came to church with us). The pastor got a call, and all he heard was that someone was passed out at church. He told us later that his very first thought was "Oh no! Adam passed out again!" We all got a good laugh out of that. Such is the life of a chronically ill patient  :).

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
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« Reply #5 on: June 17, 2007, 05:09:27 PM »

What was the worst thing to happen to you, either by your own condition or the actions of others, at work or in public?


WHn I was first on dialysis before my transplant in 1994 I was on hemo with a catheter in my chest.  I was on the late shift so I got home at like 11PM.  I felt something warm going up my stairs so I looked down in my shirt and I was covered with blood.  I called hemo hoping someone was still there.  So I had to go all the way back to Hackensack from Rutherford because the nurse left the cap off the catheter, it was clamped but blood was seeping through it.  There was a defect in the catheter so I had to get it removed anyway.  THen there was the time I was in my kitchen and I fainted, fell to the floor like a stone and my head bounced on the floor.  My mother was reading the paper in the living room and without even looking up said "are you okay, honey, I heard a thud?"  I said yeah mom, I was the thud you heard.  It was my head hitting the tiled floor you heard.   :urcrazy;

Donna
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« Reply #6 on: June 17, 2007, 07:54:29 PM »

I had a low blood sugar episode in a Bloomingdales dressing room.  I was by myself and I passed out.  The sales staff didn't notice for about 2 hours.   They called 911 and the EMT's revived me before I was wheeled out of the busy store to an ambulance.  I wish they would have left me unconscious until we were out of the store.    :-[   
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Deanne
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« Reply #7 on: June 22, 2007, 09:24:43 AM »

This is nothing compared to your stories. A few years ago, I was on high doses of prednisone and had almost every side effect in the book. One of the worst was muscle atrophy. Within two weeks of starting prednisone I started having trouble walking. One day at work, I was wobbling over to get something from the vending maching -- probably sugar-covered donuts, thanks to that prednisone appetite! One of the engineers lightly bumped into me and I went down, flat on my back and cracked the back of my head on the concrete floor. I'm surprised I didn't knock myself out. I was like a turtle on it's back. With no muscle strength, there was no way I could get myself back up again. I had to have the guy who knocked me over pick me up.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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« Reply #8 on: June 22, 2007, 09:37:39 AM »

The time: winter 1977, 2:20AM
The general location: Hanover Square, Horseheads, NY
The place: Control room, WQIX-FM
The players: her,me, and the professor
The situation: She is with me, safe, secure, and alone in the bowels of an FM radio station.  Suddenly there is a knock on the door, we don't know what to do.  We decide to ignore it.  The knocking gets louder and louder.  What are we going to do?  Holy shit it is Gary Yoggy from the local college attempting to deliver tapes of his recorded vignettes on historical events.  We've got to let him in!  She isn't supposed to be there but who would expect that visitor at that time of night?  It had been a pleasant morning up until that point.  Quick, get out from under the console and try to look like a guest! 

We let him in, he wasn't happy, and he probably knew what was going on.  Was I embarrassed?  Yes!





« Last Edit: June 22, 2007, 11:41:41 AM by livecam » Logged
Meinuk
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« Reply #9 on: June 22, 2007, 11:39:03 AM »

Let me preface with the fact that I am sick and twisted and have the sense of humor of a 7 year old....

One night early in dialysis, I had a really bad infiltration.  Ambulance was called, I went straight to the emergency room, and had to stay there all night getting my vascular intervention. - my arm looked like it was embalmed - you all know the look... 

So, I went home, slept a couple of hours, then went to work as if everything were normal.  Walked into the Dean's Office (my boss) and told him that I only came to work to do this - and proceeded to take off my jacket so he could see my arm.  His reaction was PRICELESS.  I started to giggle and told him that I was really fine, just sore and I had to apply heat to get the swelling and bruising to go away. I was also able to go to the staff meeting later that morning and then I would go home and go to bed.  So, a little while later, we were sitting in the staff meeting waiting for it to start, and a few people asked me how I was doing, I'd answer "Wanna See?" they would be perplexed and then I would drop my jacket and show them my arm.  More gasping.  Then we got back to a rather serious meeting.

A few months later, I was still having fistula problems and had to have a perm cath placed.  Our intern had been out sick with a kidney infection, and she had been told that she was not drinking enough water.  I walked into the reception area of our office, welcomed her back, then pulled my shirt down enough to haul out my catheter and told her that "This is what happens when you don't take care of your kidneys - so DRINK YOUR WATER" - now, she is a young college student and I shocked the hell out of her. - for the next week, I'd ask her if she was drinking her water - she is...

In that same time frame (this May, a week after my permcath was placed) I had just gotten to work and was in a great mood.... Finally, I found a bra that I could wear comfortably -  I walked into the office, did a little dance and announced, "Finally, I can wear a bra." - Of course, as I was doing my little dance, admissions was hosting a tour for prospective students - I laughed and ran into my office...
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
larry781
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« Reply #10 on: June 24, 2007, 10:04:37 PM »

It is good to see another college rat on this board! Your story also points out something that I have always known: ESRDs who work often go in to work under conditions that would keep regular folk out a week!
-Larry
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« Reply #11 on: June 24, 2007, 10:09:46 PM »

Let me preface with the fact that I am sick and twisted and have the sense of humor of a 7 year old....
.

what makes you think you are any different than the rest of us   :urcrazy; :thumbup;
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« Reply #12 on: June 25, 2007, 04:35:32 AM »

Because of a stupid doctor perscribing too much kexsolate it blew out my intestines and I ended up with a temporary colostomy.  For those of you from Canadah... that is where they take your instine and create a stoma (hole) through your stomach and attach a bag for you to shit in.

I was still working.  Well, it makes FART sounds without smells because that is trapped in the bag which poofs out.  There is no control.  You can also tell when shit is coming out usually with gas that you can audibly hear.  OMG it was so embarrassing. 

I think my face was eternally RED and I would say "did you hear that?"  Finally a coworker said "we don't hear anything.  If you wouldn't say anything no one would notice anything."

I refused to go to big meetings.  There was NO way I was going to be trapped in a quiet meeting room with people!

I was forced to go to one meeting though and I walked in and there was a coffee pot perking away.  Ahhhh I went and sat by my friend the Coffee Pot.  We could be noisy and no one would notice.
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« Reply #13 on: June 27, 2007, 11:07:27 AM »

Because of a stupid doctor perscribing too much kexsolate it blew out my intestines and I ended up with a temporary colostomy.  For those of you from Canadah... that is where they take your instine and create a stoma (hole) through your stomach and attach a bag for you to shit in.

I was still working.  Well, it makes FART sounds without smells because that is trapped in the bag which poofs out.  There is no control.  You can also tell when shit is coming out usually with gas that you can audibly hear.  OMG it was so embarrassing. 

I think my face was eternally RED and I would say "did you hear that?"  Finally a coworker said "we don't hear anything.  If you wouldn't say anything no one would notice anything."

I refused to go to big meetings.  There was NO way I was going to be trapped in a quiet meeting room with people!

I was forced to go to one meeting though and I walked in and there was a coffee pot perking away.  Ahhhh I went and sat by my friend the Coffee Pot.  We could be noisy and no one would notice.

OMG this made me really laugh.  Stupid Doctor, glad it was only temporary!
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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
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Rob showing off his pot of gold!

« Reply #14 on: June 27, 2007, 11:12:56 AM »

About 10 years ago I used to work as an Executive Secretary, my desk was way out in the open, everybody had to walk by my desk to basically get anywhere.

There were a couple of people at my desk, one person was telling a really funny story.  Well, they told the best part right as I was taking a big chug of water.  Don't you know I start to laugh and choke on the water at the same time.  I mean really choke on it!  I spewed out the water, started making these ungodly choking, gagging and burping sounds.  Everyone around me is horrified and is trying to help me.  I am soaked from sweat and my water and in the middle of the choking I farted.  It was the most humiliating experience in my life. 
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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
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Going through life tied to a chair!

« Reply #15 on: June 27, 2007, 02:15:23 PM »

     :rofl;     :rofl;    :rofl;    :rofl;
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Meinuk
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« Reply #16 on: June 28, 2007, 11:07:29 AM »

Let me preface with the fact that I am sick and twisted and have the sense of humor of a 7 year old....
.

what makes you think you are any different than the rest of us   :urcrazy; :thumbup;


That is just why I love it here!!!
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #17 on: June 28, 2007, 02:33:33 PM »

About 10 years ago I used to work as an Executive Secretary, my desk was way out in the open, everybody had to walk by my desk to basically get anywhere.

There were a couple of people at my desk, one person was telling a really funny story.  Well, they told the best part right as I was taking a big chug of water.  Don't you know I start to laugh and choke on the water at the same time.  I mean really choke on it!  I spewed out the water, started making these ungodly choking, gagging and burping sounds.  Everyone around me is horrified and is trying to help me.  I am soaked from sweat and my water and in the middle of the choking I farted.  It was the most humiliating experience in my life. 


I laughed my heart out at your post- I have been there, and luckily for me it was in private- but I still know how mortified you must have felt...what can you do but laugh at yourself?!!!
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

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dialysis april 14,2006
Meinuk
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« Reply #18 on: June 28, 2007, 02:40:53 PM »

It is good to see another college rat on this board! Your story also points out something that I have always known: ESRDs who work often go in to work under conditions that would keep regular folk out a week!
-Larry


Ahh yes, life in academia.  I wore a tie-dyed t-shirt to work today, just because I could!!!  (I love summers!)  And, over the past few months, I've really grown to love my job. Maybe because it is such a contrast to my nights at the dialysis unit.  Every day that I am able to make it up the subway steps at 14th street, I feel as though I've accomplished something.  (That is coming from a woman who just a few years ago had to have extra pages sewn into her passport because all of the pages were used up!!)
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #19 on: June 29, 2007, 07:30:21 PM »

 :rofl; :rofl; :rofl;  Rerun and Skyedog, your stories made my day  :2thumbsup;
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« Reply #20 on: November 14, 2007, 04:14:49 PM »

When I was on Dialysis on the 1pm shift, I would do my air shift, go to Dialysis and then come back and finish all my work.  I came back about 5pm and headed into the production studio.  I'm clicking on the computer and I feel something very wet on my arm.  My blood had soaken the gauze and was running down my arm to the carpet below.  I ran out to the lobby and a couple of our saleswomen found the first aid kit.  Fortunately they've remodeled that studio since then so the bloodied carpet is gone.

Also, during one hellish air shift I had to wave people off who were coming into the studio because I was vomiting into the studio garbage can.

I have a long history of sudden vomiting in garbage cans.  I guess it's my thing.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

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Dialysis.  Two needles.  One machine.  No compassion.
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« Reply #21 on: February 23, 2008, 01:37:49 PM »

I occasionally get low BP episodes were I get all light headed and sick to my stomach. Usually they only last a few minutes and if I lay down and put my feet up I am ok in no time. But of course when you having a BP moment you look like your dying. So there I am on vacation in Acadia national park by myself when I feel it coming on.  "Ok just get back to the car, no biggy", nope too weak not gonna make it. Ok just gonna sit here on this rock and relax for a sec. Oh no gonna vomit!"  Just as I start puking the old lady brigade comes up the path, "OMG are you ok, someone call a doctor! Get help, hurry!"   "No maam really I'm ok, blahhhhhh!! Hurl!" " It's just low blood pressure, blaaaahhh!"   So of course they wouldn't leave me alone until the park ranger got there and I explained everything to him. How embarassing!
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kitkatz
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« Reply #22 on: February 24, 2008, 07:49:01 PM »

I had chest pain at school the Monday after Superbowl Sunday. Had to go to Kaiser from school campus. My VP says I went home to finish my beer.  I wish!
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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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