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Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 10/16/2008 9:05 PM (GMT -7)   
Hi. I'm Joie.

I'm trying to figure out what the right or correct way to explain all the joys of "Joie-hood". And yet, what's the point, we've all been there. smilewinkgrin

We've all whimpered when there was only a single bathroom that was occupied. We've all had accidents. We've all sat the pot and wondered if banging one's head against a wall would make one stupid enough to not understand the agony of the spasms.

tongue And this is me feelin' cheerful.

I suppose, mostly its the fight against the constant never-ending agony of my hips/back/ and recently knee pain mixed in with the battle against depression. Since I've dealt with depression before, I've got tools and whatnot for that but I still find my mind whimpering at me phrases...that concern whether dead cells can send active pain (LOL, for the window-dressing used before).

I've got the emotional thing mostly cool, but I spend three weeks out of four wishing they'd never discovered the last fistulas and abscesses and could've died...peacefully in agony LOL. I'm morbid. I spend the weeks before, during, and after the lovely monthly wishing someone would stop flailing me from the inside out. No insurance so no primary doc. At least for now. And I suppose, it took me quite awhile to actually come to a forum for the CD when I KNEW I wouldn't start sniffling and whimpering 'cause of everything I'm learning of the joie's of our shared diseases.

And from here I'm shut the bleepity bleeper and squakin up.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 10/16/2008 9:13 PM (GMT -7)   
Welcome to the site. Bleep all you want...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/16/2008 9:45 PM (GMT -7)   
Welcome aboard. Hope you can find something here to help you out - one way or another.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 10/17/2008 12:48 AM (GMT -7)   
welcome. is that pronounced "joey" or "joy" or something differant. just wondering so we get it correct. dont those lovely JP drains feel so neet when they yank them out through that tiny little healed over hole? ah the memories.
randynoguts 



     http://www.geocities.com/randynogutsweb/


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/17/2008 5:00 AM (GMT -7)   
Hi and welcome they say life is better when your sharing it with someone else. How long before you have insurance? Are you trying any diets to help with your CD? See you have had fistula's too nasty little things .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/17/2008 6:22 AM (GMT -7)   
Welcome Joie1 to Healingwell. As you can see we have alot of great and supportive folks on this board. Vent away, we of all people understand your pain.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/17/2008 9:49 AM (GMT -7)   
Welcome. Feel free to whine, cry, snivel, bleep or whatever you need to do! This is a tough thing to live with. We all understand.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 10/17/2008 10:10 AM (GMT -7)   
Haha...personally, I think NG tubes are worst than the removal of drains. As for diets, I have stages. I go from eating the same thing for four meals for a few weeks (b/c its all I can eat) to needing to eat something different every day. If I eat something twice in a row, I can get sick that way too. I know the items that make me feel super-awful and avoid them.

As for ranting and raving...I'd rather not. I'd rather be able to forget the emotional stuff so it can be compartmentalized to a private time. Had to deal with all the lovely PTSD after spending the summer 5 yo in two hospitals. Including the issues with my fertility. It's easier if I don't rant or rave too much. I start getting angry and vocal about this disease, I start crying and that makes me strain my back. :-P Vicious cycle.

Concerning insurance: I had some when I was sick five years ago. Then I haven't had it since, I was in college ya know. It wasn't a priority like food and gas and books were. They forgave my main debt from this surgery ($49,000.00) but I still owe everyone from surgeons-anesthesiologists, the GI doc who I never saw clearheaded, etc. When I was hospitalized for the pancreatitis, I accumulated another $40,000.00 in staying three days at the closest hospital (private). They didn't see me in the ER until we put down $200. ~sighs~ Ain't no escaping the evils of money LOL

I know I should at some time figure out some way to live (other than spending $230 a month on Pentasa). I will. I should at some time write down a timeline before I confuse the ever living boredom into ya'll. And I'm sure I will at some time LOL but not today. Today is just a bad day where my PMS kicks in and I woke to the ever subtle throbbing of my hips. Ahhhh...it's Friday.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/17/2008 11:38 AM (GMT -7)   
Hi There are clinical trials where they give you meds and there is some numbers to call for Rem. or maybe other things that might help .Others here know more then me on that subject. Hope the PMS gets behind you soon. Have a good weekend. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

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