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schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 8/14/2008 10:00 AM (GMT -6)   
Hello All,
 
I am a very old timer here who hasn't been around much of late due to some serious health matters - both UC and non-UC related. I am in a nursing home still from March and scheduled to go home October 1.  I have had my share of hospitals, doctors and the like and miss my home and wife terribly.
 
I also have a great deal of affection for this support group and forum.  I love the exchanges of ideas and the communal spirit you can gain from this group of beloved. 
 
I haven't responded to many posts lately, but this one made me a bit sad.  Not because of anyone's individual post - not at all in fact.  But it is the spirit of the thread that made me sad.  Instead of being uplifting - I was brought down by a spirit of negativism vs. optimism.  We need to offer hope, even in the bowels of despair - no pun intented.
 
Again, I am not speaking to anyone, or their remission strategy, alternative or conventional or both.
 
But could we offer up hope, support, lifting, joy, compassion, empathy and love.  At least for me, that's why I am here - and back after six months of illness.
 
Does anyone else feel this way?  Or am I just being, or bringing emotions that evoke the joy we need - even when we are at our sickest moments.
 
With love and respect to all here,
 
bob 

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/14/2008 10:12 AM (GMT -6)   

BOB - exactly.  I am a 68 year old granny who comes here for help with administering medication, etc. and reading what success others have had.  Sorry for those who are suffering but not sure we need to bring all that here.  I support everyone and feel very fortunate to only have a mild case of UC at my age.

You hang in there and bless you for your courage and determination.

You know most of the really successful people who have conquered UC and Crohns are not here but they are out having fun despite this horrible illness.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 3X3
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa
 
 
 
 
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/14/2008 10:16 AM (GMT -6)   
It is so important to be positive, I just told my friend today who is going through a hard time, "you made it through yesterday, you made it through the day before that, the week before that, last year, etc.; you can make it through today and you can make it through tomorrow".

I had a pity party for myself yesterday, it was needed, then I got annoyed w/myself and picked myself back up again. My 26 year old step sister passed away last week and I took a good look and realized how much I really have and how much she will never get to experience and it could all be taken away at any time, life really is so very precious.

You have gone through so much it really amazes me. Take care!!!!
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!
 


tabitha m
Regular Member


Date Joined May 2007
Total Posts : 139
   Posted 8/14/2008 10:21 AM (GMT -6)   
For me it is my determination that this illness, disease ( i prefer condition ) whatever you want to call it will NOT stop me from living my life fully . It just holds me up sometimes .

I know its not always easy when you feel so crap but it could always be so much worse and after watching one of my closest friends die of cancer last year wayyy too young . i know it can be worse .

Kerry x
Diagnosed Proctitis 2003
leaped to Pancolitis May 2007
seem to be flaring again so back on pred and predfoam for me for a week
2000mg pentasa a day
omega 3
Allergic to Sulphalizine
In remission since june 07
Multivitamin and calcium supplement
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/14/2008 10:29 AM (GMT -6)   
You're right, it's important to be positive and uplifting, unfortunately dealing with a chronic disease can make it tough and unrealistic to have nothing but happy postings...it's just as important to cry as it is laugh, same goes with venting, afterall support should be equally distributed on all texts, happy or negative...we all get "bummed" out at times, angry and frustrated too and although it's not easy to deal with negativity it's a reality...there is a positive in negative posts/replies in that we are able to get some frustration off our chests without being judged because we've all had many crappy days and can relate to what each of us are going through....it's not always pretty, but neither is life.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/14/2008 10:45 AM (GMT -6)   
Bob, you're absolutely right. I felt like commenting to say "Woah, we need to cool down" but I just stopped reading it because it was too combative and negative and I know our disease can be a touchy subject for everyone but there's times when we just have to agree to disagree. Everyone will have their own opinions and beliefs and if we don't believe in them, we can just keep moving on with our lives in the way we feel best.

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 8/14/2008 11:17 AM (GMT -6)   
Sorry if the post ended up so negative, it started off as a rant only with an expression of personal opinions and freely shared information. There was no interest in pushing information or opinions on anyone. When you click the post seeing rant you kinda know what your getting into. I've always been under the impression that by rooting out the negative and recognizing it, positives can be the conclusion.

You cannot have one without the other. There would be no day without night, no superhero without a supervillain. The rant post ending up twisting and turning into something kinda ugly and beautiful at the same time. It was a frankenstein project that worked in allowing touchy subjects and obviously repressed feelings to be vented and things let off people's chests. There would be no support or stress release in a group that focused on the positives all the time, especially concerning potentially life-threatening chronic illnesses and the myriad of treatments and therapies that accompany it.

Bob I'm glad you are on the mend after 6 months, October 1 is just around the corner! Hang in there bud and you will be home before you know it. I will pray for your return home and continued building of health. Thanks for the kharma check. :)

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/14/2008 2:16 PM (GMT -6)   
there really is no need to take things posted on here "personally".... it's just people's opinions, nothing more. And even if someone on here specifically targets another poster (which never happens!), who cares? I liked that rant thread, but it was a bit....much. Seems like too many posters took it as a personal affront on their beliefs, which I don't feel that it was. but anyhow, glad to hear you are on the mend, Bob! It's nice to see you posting again.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/14/2008 2:44 PM (GMT -6)   
Eva Lou said...
there really is no need to take things posted on here "personally".... it's just people's opinions, nothing more. And even if someone on here specifically targets another poster (which never happens!), who cares? I liked that rant thread, but it was a bit....much. Seems like too many posters took it as a personal affront on their beliefs, which I don't feel that it was. but anyhow, glad to hear you are on the mend, Bob! It's nice to see you posting again.

I can tell you who cares - the administrator and owner of this forum who has to pay for the bandwidth we use without charge. This is a support forum, and extended arguements, debates about the healthcare system, etc. use the bandwidth in ways this forum was not meant for.

There's nothing inherently wrong with these conversations, only with them appearing here. This is a support forum, not a social networking site or a debate site. Other forums are available for those purposes, including IM programs. We do exchange ideas and we seldom all agree. However, it's entirely possible to express your own beliefs and ideas without condescending to those who believe differently. Some feel "sad" to see people taking drugs for UC? Believe me, there are just as many on the other side who feel "sad" for those who choose alternative therapies. We just need to be respectful of one another and supportive, or take it somewhere else.

If you have questions about this, read the rules again - and this time please consider the context and philosophy as you read.


Judy
 
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.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/14/2008 3:38 PM (GMT -6)   
no, you misunderstood that post- all I meant was not to take it personally if someone pointedly disagrees with you. I'm not advocating for confrontations. But debate is fine, isn't it, as long as there's no insults? And to reiterate, I truly didn't think that rant thread was condescending or confrontational. A little heated perhaps, but that's about it.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/14/2008 3:54 PM (GMT -6)   
Yes, discussion is fine, within the bounds of remaining supportive and informative. I'm glad you weren't offended. Many others were.
Judy
 
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.


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 8/14/2008 4:14 PM (GMT -6)   
My computer screen shows 362 pages of threads, and I'll bet 95% or better are positive, supportive, infomative -- which has got to be a better run than most people's days (or lives) in general, not to mention with ulcerative colitis.

I wish every day were a positive one, but I understand that it just isn't going to be that way and that I need to find a way to deal with life's lemons and gain some overall perspective on the long haul. (A sense of humor works for me.)

I'm confident in my choices and opinions, and so I'll count myself lucky that I'm never offended by anything. Something can be offensive; that doesn't mean I have to be offended by it. If inadvertantly being called a puppet by an anonymous poster ranting about uc on a message board for uc offended you, I want to trade places. Today, I dealt with crack-addicted zombies and drunks seeking treatment.

The guy marked his post a rant and then apologize repeatedly when people thought he was off base. We've all been there. Cut the guy some slack.

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 8/14/2008 4:29 PM (GMT -6)   
Seconder...if you have a problem w/ any comment/suggestion left by a moderator feel free to hit the admin alert button in the upper right hand corner of the post box. This will send an email to Peter, our administrator.

We have no issues w/ people ranting here as long as they do no attack each other. I've ranted on many occasions. As for now the thread in question has been locked.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Zegerid (not sure if it is working)

http://www.healingwell.com/donate
Co-Moderator UC Forum


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 8/14/2008 4:31 PM (GMT -6)   
I'm commenting on a thread -- as was Judilyn, I thought.

jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 8/14/2008 4:34 PM (GMT -6)   
Let me preface this by saying everyone here has the right to say anything and everything he/she wants.

However...

We all know how terrible, life-changing, and depressing UC/Crohn's can be. We must also remember that many, many readers here have been, currently are, or will be in severe depression due to the prognosis of our condition(s). I was to the point of suicide just weeks ago, and I'm sure I am not alone.
We must remember that, just like the drunk and belligerent fan at the baseball game, we might actually affect the outcome of the game because of the words we choose. While we have the right to say whatever we want, we should temper our comments and try to put a positive spin on things instead of leading others further down into the depths of sorrow.

I expect people to disagree with this.
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007; 16 Jun-22 Jun 2008
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007
Imuran (azathioprine) 50 mg x 4 daily
Iron, Vit C, Vit D, Zinc, and seemingly always on Flagyl
Eating fruits and vegetables like there is no tomorrow...


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/14/2008 4:47 PM (GMT -6)   
My point exactly, James. Just as we're in different places physically, the members here are in different places emotionally, and the moderators are tasked with keeping things on an even keel. I have no problem whatsoever with people arguing, or even flaming each other. This just isn't the appropriate place.

Now I suggest we move on to more productive conversations.
Judy
 
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.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 8/14/2008 4:54 PM (GMT -6)   
Well said Judy. I support you fully.

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/14/2008 5:22 PM (GMT -6)   
eyes  
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 8/14/2008 6:02 PM (GMT -6)   
smhair Yes, that's me right about now. turn shocked
Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 

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