Do you have a job? How???

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Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/18/2008 10:51 AM (GMT -6)   
When I got UC I was (and still am) a stay-at-home mom.  I enjoyed working and would like to go back one day, but I cannot fathom how anyone in a flare can hold down a job.  If you work, do you mind sharing with me how you cope with a flare on the job? 
 
I'd like to hear anyone's work stories, really, including if you've had to leave a job because of UC. 
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG (as needed), and multivitamin daily.
Diet/Exercise:  Specific Carbohydrate Diet (SCD) as of 7/12.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare since diagnosis
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/18/2008 11:00 AM (GMT -6)   
When I had UC I worked full time. The last 2 years of my disease I was in a severe flare. I worked the entire 2 years with the exception of the intial 3 weeks of the onset and then towards the end of the second year I missed another 2 weeks due to hospitalization. I have a demanding job and manage a department with several hundred employees. It wasn't always easy to work but work helped me to keep my mind off my butt! I ended up having surgery and still work in the same job full time.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 8/18/2008 11:02 AM (GMT -6)   
I'm midst flare right now. I am a systems analyst, so I'm lucky I have a desk job. I don't make a big deal out of UC or the flare. I let the folks that sit close to me know and I let my boss know that I have UC and I am having some "gut' issues right now. As long as I don't make a huge deal out of it, no one really cares. As for meetings, I sit near the door. I tell the meeting host that I may have to leave for a few moments. Again, not a big deal.

For me, the anxiety of the flare is worse than the flare itself. So if I treat it like it isn't a big deal, it isn't a big deal. I guess it's all in the approach.

I'm also fortunate because I telecommute once a week. I also let my boss know that if I am having a really tough day, I may need to dial in. So far I haven't had to play that card.

What sort of job will you be looking for? I would think that a retail job or one where you are standing a lot might be difficult. But if you are seeking a desk job, it might not be so bad.
Age: 48
location: Seattle, Wa
currently in small flare, tail end of colon
Diagnosed with UC in June 2006
Medications: Asacol 3 pills 3 x/day, Cortifoam at bedtime, Canansa in the morning
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


4MY2KIDS
Regular Member


Date Joined Nov 2007
Total Posts : 25
   Posted 8/18/2008 11:16 AM (GMT -6)   
I was a stay home mom for 6 years. I was dx with UC pancolitis in Oct 2007. I was so sick then it got a little better, (I was looking for a job in the process) I then got a call from a hospital and asked if i was interested in a job as PRN person and I said sure, Went for my employness check and let the nurse know that I had UC and at the time it was unspecfied. At the time I was feeling ok. I had to call in sick one time because I had a cold then I had to call in one other time because my tooth broke off. Then I came down with a bad flare again, fever, chills, dd, vomiting, sick. I emailed my supervisior to let her know and asked her If i can bring in my doc's excuse and she said no, so I had my son take it anyway. Well needless to say, she was not happy with me and didnt put me back on the schedule. So im not sure what's going to happen, but if you have someone that doesnt understand its best if you can stay home.
 
Sorry for the long drawn out story but i needed to vent. It just makes me angry that if you dont have the diease no one understands :(
DX: unspeicied colits as this point :( Oct 08
current meds:  kolopin .5mg as needed, bentyl 10mg as needed, back on predisone 60mg to taper down to 20mg :(
 
 
 
Teresa, Virginia  
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/18/2008 11:34 AM (GMT -6)   
yes, been at same co, since dx'd. Minor flares were not a problem. Major flares I have a desk job and do mostly outbound calling, so I could leave my desk when I needed to. Driving to and from work with a 45min commute was scary sometimes. My last major flare up my prev boss (I seem to get a new one each year), gave me her old laptop and said I could work from home when I needed to and I was very close to going on remi and she said I could work from home on infusion days if I wanted to, to help cut down on using up my personal time.

My co. is very good to people dealing with illnesses, family problems, etc. however they also expect 110% percent when you are well, meaning I dont get comp time if I need to work over the weekend (not usual) and I have to travel sometimes and do not get comp time for that (well I am salary anyway), but also if something needs to get done, I just get it done and do what I have to do to make it happen, it's what is expected of us at my company...but at the same time when I had to leave one day b/c my mentally unstable mother was in a car accident they were just like you take care of you and whatever else you need to do and they are very good in those situations.

However, if it comes to a point where I cannot keep flares under control (I have not flared longer than 3 mos and that one was my 'hell flare') I will get surgery.

HTH! and btw you never need disclose your illness to your company......I only did b/c ppl here are pretty open and everyone seems to have something (my old boss was also going to take remi for a skin disorder and my new boss has type 1 diabetes) and I wanted them to know I am dependable it's just this DD is making me have to take time off here and there.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/18/2008 12:19 PM (GMT -6)   

I worked through a five year flare and only missed a few days. My employer was very accommodating, though, and on really bad days I sometimes worked part of the day from home. I'm a manager and can access all the computer files from home, so that helped.

For at least three of those five years I got up in the morning (3 hours before I had to leave, of course), spent my 1-1 1/2 hours in the bathroom, got myself ready and went to work. Fortunately it's only a 15-20 minute drive. At work I'm able to go to the bathroom as often as I need to, but I also kept a change of underwear and clothes in my office as well as a box of wet wipes.

By the time I got home I was exhausted, and crashed. I just rested at home. MY DH pretty much did all the cooking, laundry, etc. Yes, he's a saint. On the weekends I rested so I could make it through the next week.

It was very hard, and there were a lot of times I thought I might have to go on disability, but my work is such an integral part of my identity that I really didn't want to quit. As soon as I started feeling a little better, I was so glad I hadn't quit. During just a "normal" flare, it was pretty easy to manage because I was only in the bathroom four or five times during the work day instead of every 30-45 minutes.


Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 8/18/2008 12:30 PM (GMT -6)   
I have been working full time since before my diagnosis. (Except a few months from times when we moved and I was searching for a job.)

How do I cope? Thankfully, my last job and this one are very flexible - if I get in an hour late because of bathroom runs or needing extra sleep, it's no big deal - I just make up the time that day or week. I have worked when I probably shouldn't have. Coworkers and friends have noticed how pale and unwell looking I have been. I always keep a spare pair of undies in my purse. I take things day by day - looking farther ahead is stressful for me. I keep snack foods at my desk and in the company fridge. EVERYONE has something they deal with. I find that being at work allows my mind to focus on things besides how unwell I feel. It gives me a reason to move.

My coworkers and boss are very understanding - thank goodness!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/18/2008 1:27 PM (GMT -6)   
I never had too much trouble until '03 when I was really sick. I was too stubborn to stop working but I had to stop driving because I ran into a ditch 3 times in 2 weeks because I was falling asleep at the wheel. Thankfully both the car and I were unharmed because I was going really slow. The common phrase from my rather sarcastic (but fun) co-worker when I asked if I looked ok (because I felt like trash) was "you look fine because gray is a color afterall and all colors are nice." I would catch a little flak about the time I was spending out of the office bt not much and I always had my work done ontime because I'd work after normal hours to finish what I couldn't during the day.

Since then I've changed departments and the new boss is amazing! He's got health issues too, different variety but he completely understands the need to trek out to Drs at odd and sometimes inconvienient times and is willing to work with me to make up the list time so I am not burining up vacation time. Actually thanks to his understanding and cooperation I will be taking my first vacation in the 7 years I've worked here this year. From August 30 - September 7 I will be down in Virginia about 12-14 hours away from everything here I might even con the hubby into getting his sister to babysit so we can run away as a couple and spend the day at a coaster park that I want to see there!

Both these jobs have been desk related, one was programming and computer rebuilding/troubleshooting and this new one is scheduling health testing for our company so both can keep me as still as I need to be or as active as I want to be depending on how I'm feeling that day.
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle Align 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV monthly
- Allergies - Zyrtec 10mg 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/18/2008 1:38 PM (GMT -6)   
I have crohns and have worked the whole time. One job was in juvenile corrections and that was difficult because I couldn't leave the residents unattended. There I made sure everyone knew about my issues and that I always had someone on standby in case I had to run to the restroom. I refused to do transports and would only take kids outside if there was enough staff that I could get back inside in a bathroom emergency. I currently am in law school and just told the profs that if I leave a lot its because of crohns and not because I'm rude or yapping on a cell phone. I also work at a law firm and have my desk very close to the restroom. I don't have to walk by anyone to get there which really cuts down on my embarassment. I have a pack of wetwipes on the back of the toilet. Like others said the hardest part is my 45 minute commute. But I know where a bathroom is off of every exit and I don't eat or even take my meds until after I arrive at work. Just a sip of water in the AM will prompt a poop. Also like others said when I am flaring I allow about an hour and a half to drive in so I can stop whenever and as often as I want to poop.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/18/2008 3:18 PM (GMT -6)   
Oh, yes, the other change I made was I stopped eating lunch. I might have a few crackers, but never a mid-day meal, because that tended to make me have to go too much in the afternoon.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 8/18/2008 3:42 PM (GMT -6)   
I am a high school teacher and it is very hard to function when I am in a flare- which I am right now. At my old school many people knew I had UC and were very helpful and they were always looking out for me. I just started at a new school and haven't told anyone about my condition.

Overall, I missed 15 days of school last year- but I was in the hospital for 8 days- so overall not bad.
Jackie 42yr. old
Pancolitis - dx Jan. 07
 
Remicade- 7th infusion June 16th
Lialda 2 tabs
 
Protonix, Rowasa enemas
 
Lexapro, Synthroid
 
 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/18/2008 9:05 PM (GMT -6)   
This is such great info for me - some encouraging, some not, but all very helpful. I would likely have an office job (again). I write mostly and may even be able to work from home, which would be ideal.
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG (as needed), and multivitamin daily.
Diet/Exercise:  Specific Carbohydrate Diet (SCD) as of 8/12.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare since diagnosis
 
 


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 8/18/2008 9:15 PM (GMT -6)   
I have to admit that desk jobs and being able to work from home time to time really help out ALOT! I have been at my job 5 years and I have been diagnosed with UC for 2. So it wasn't like I was starting from scratch. I had already formed relationships with my bosses, co-workers, etc. Looking for a new job is always scary....I think UC makes it worse.

I think maybe the easiest way to handle it is to create a list of possible opportunities. Then note the pros and cons of each. That way you can make a totally informed decision.
Age: 48
location: Seattle, Wa
currently in small flare, tail end of colon
Diagnosed with UC in June 2006
Medications: Asacol 3 pills 3 x/day, Cortifoam at bedtime, Canansa in the morning
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 8/19/2008 9:53 AM (GMT -6)   
Hi i work nights in a nursing home and my boss and the people i work with are all very understanding.It does make a differance.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started Salofalk supps 1gm 26/6/08
  Mesalazine 400mg 2 tabsx2 day


SunnyFlorida
Regular Member


Date Joined Mar 2008
Total Posts : 53
   Posted 8/19/2008 7:19 PM (GMT -6)   
Definitely consider a desk job where you have access to the restroom at all times.  Last year I took a cashier's position at a well known home improvement store, and that proved to be a disaster.  I had to work outside two to three days a week (full time) in the 90 degree heat, and it threw me into a flare.  The restroom was at the other end of the store, and I was allowed to go only three times a shift--during two scheduled breaks and lunchtime.  The management was not sympathetic at all; I was no good to them if I wasn't at my station at all times.  Needless to say, I ended up quitting.  I will not work in retail again unless I have the freedom to make it to the restroom when I need to.
~~~~~Teresa~~~~~
 
Diagnosed with UC in 1997
Asacol 400 2 x 3 daily
Mesalamine liquid 60 ml once daily
 


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/19/2008 8:36 PM (GMT -6)   
Well my husband was fortunate in that he did not get this until he was 61 and already retired. (He drove a van/truck for his employer and in and out of it constantly to make deliveries...in bumper to bumper traffic many times during the day. This would have definitely kept him out of work for a long spell...his sick leave would have been used up in no time at all.)

Getting this when he did...he could just stay in and not force himself to do things or go places while he was flaring so badly. As stressful and frustrating as it was he didn't have all the added pressures many of you have and could rest as much as he wanted/needed.

We both marvel and have the utmost respect for all of you who not only have to cope with this but find a way to work, raise your families, and deal with a host of other situations while flaring. You are truly very strong people and and inspiration to many others. I know in a lot of cases you just do what you have to do but that doesn't make it any easier either.

I just wish the level of awareness and proper consideration was widespread for everyone suffering with the DD. Too many just don't "get it" and don't understand what this is truly about and just think you have some D or upset stomach type thing and you'll get over it eventually.

I'm the one at the computer gathering all the info and picking everyone's brains and getting advice from HW that has been so invaluable. I cut and paste from these threads all the time and have them at the kitchen table for him to keep up on advice and opinions regarding issues he is having that others are having as well.

Relating info to him about alot of my HW extended family's situations keeps things in perspective for him and he counts his blessings when he is enjoying an easier time of things. When he was so bad and I was able to turn to this forum for the support and advice I/we needed even though he was miserable still made it more understandable and easier to cope with knowing things in all probability were going to improve.

He has 2 great doctors but as we all know you only get a limited amount of time to meet with them. As thorough as I try to be with our prepared questions and notes it always feels like the 15 minutes or so you have with the Dr feels more like a few minutes. This forum has really helped us be prepared and aware of things to be sure to ask and discuss.

In my heart I don't think he would be where he is at today if not for HW being able to get me focused and pointing me in a few directions to pursue a few suggestions with his doctors. I actually impress them being so in tuned and have informed that it is the HW UC forum that keeps us so well informed.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone  12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/19/2008 9:26 PM (GMT -6)   
I am a corporate attorney and have never told employers about my illness, because I think it would hurt my status to be known as sickly (I don't even tell my friends, that's a personal choice). I was only hospitalized once overnight for anemia and was able to keep the details to myself, athough I've probably been sick enough at times to have warranted other hospitalizations. Sometimes prednisone gives me moon face but my husband says it not that noticeable.
Anyway, I just make sure I use the restroom before every meeting, after lunch, before I leave home for work, on the way to work again if needed (35 minute commute)(I wish I could carpool sometimes but that's out of the question!), whenever I leave the office, as soon as I arrive somewhere, before I leave for home...just lots of pre-emptive bathroom visits. I suppose some people might notice I'm in the bathroom a lot, but everyone has their quirks and I just don't talk about it.
My work takes me out of the office a lot, so I know where lots of public bathrooms are around the cities I spend time in and just stop as often as I need to in order to function and be comfortable. I have to travel by plane about every six weeks and that can be miserable, but I always get an aisle seat near the bathrooms (don't want to get caught with the beverage cart in the way!) and ignore the seatbelt sign if I need to go.
It's not fun, bathrooms are something I think (and even dream about) constantly. Sometimes I feel sorry for myself but also proud that I have a very successful career despite this challenge.
49 year old female, diagnosed in 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently 15 mg prednisone tapering off from lingering flare;
Slow-release iron and B-12 shots for severe anemia.
August 2008 Tested gluten intolerant and started gluten-free, soy-free, etc. diet and Replete probiotic, DGL Plus (licorice root, slippery elm), Permeability Factors, under care of naturopathic doctor.
Flare is resolved after two weeks of no gluten, soy, etc!


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/19/2008 9:42 PM (GMT -6)   
Hi Peety! I am going to be a third year law student and currently work at a law firm. I totally respect your decision to keep your disease private but you would be surprised about how great others can be as well. My law firm knows all about my disease and are super supportive. I didn't realize how supportive until I asked for a recommendation for a clerkship I am applying for. He wanted to write about how I stand apart from other candidates because I do such a good job and come in every day on time etc while facing crohns disease. He admires how I manage my disease with meds and food and don't let it stop me from doing what I want to do. That I make accommodations for myself and always get the job done and done great. I told him that although I was flattered that they saw my crohns as a strength instead of a weakness I would rather not bring that up until after I got the clerkship. They respected that but I must say, I was shocked at how highly they regarded me and saw my crohns as part of who I am and that it made me even a better person in their eyes.


26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/19/2008 10:18 PM (GMT -6)   

Sounds like you are destined for success.
Many legal work environments are just not very nurturing or accommodating, and that's being gracious! It's rough out there, and women also still have to demonstrate they are as tough as men. I have a lawyer friend who even hid her breast cancer & mastectomy from all but a very few in her firm (when she took off the wig her colleagues just thought she had decided to cut her hair really short!).
But maybe it's just as well to avoid those places, right? Good luck, feel well.

 
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently 10 mg prednisone tapering off from lingering flare;
Slow-release iron and B-12 shots for severe anemia.
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet and Replete probiotic, DGL Plus (licorice root, slippery elm), Permeability Factors.
Flare is resolved after just two weeks of no gluten, soy, tomato, other foods tested to be intolerant!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/19/2008 11:14 PM (GMT -6)   
I had to laugh at your litany of bathroom trips, Peety. I always tell people "I go first, last and twice in between."
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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