PP: from Village to City
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PP: from Village to City
Dear All,
The beautiful thing about PP is that people "wear their hearts on their sleeves". (i.e. they can say anything as long as it is sincere). There are plenty of "poop" discussions..... but no BS..... (and if there is any BS it is quickly disposed of ----- well we are all experienced in disposing of s---t ).
So in that spirit I want to be honest about my lack of contribution to discussions. When I was DX MC (and thankfully found this lifesaving community) there were about 300 members. It was a "village". If I was away for a few days I could, in a couple of hours, catch up on the posts and contribute in some small way.
Now, with approx 1500 members it is a "city" (and I am sure it will be a "mega-city" soon) . If I am away for a few days there are hundreds and hundreds of posts and it takes 5 or 6 hours to catch up on them, let alone write any responses. I am at a loss at how to contribute.....which to respond to?? And anyway in most cases I have nothing significant to add to what has already been said. The rational discussions are well taken care of. But, but..... I do feel bad not to have done a "hug" to all, new and old, who are suffering...... there is so much suffering I do not know where to start.
But I do (eventually) read all posts and I do pray for and hug you all.......... And I clearly see there are saints (new and old here) who do respond, keeping the information flow, spirit and love of this community alive.
I am so thankful to you all and to Tex especially, who has seamlessly moved from "Village Headman" to "Mayor of the City".
Love ant,
P.S. I had planned an update on my medical status and will do so soon. I had wanted to give a positive update in February, but then went into a flare and had to take some actions (increasing my entocort back up to 2 pills (6mg) a day). I seem now to be coming out of the flare and am back down to 1 pill (3mg) a day
The beautiful thing about PP is that people "wear their hearts on their sleeves". (i.e. they can say anything as long as it is sincere). There are plenty of "poop" discussions..... but no BS..... (and if there is any BS it is quickly disposed of ----- well we are all experienced in disposing of s---t ).
So in that spirit I want to be honest about my lack of contribution to discussions. When I was DX MC (and thankfully found this lifesaving community) there were about 300 members. It was a "village". If I was away for a few days I could, in a couple of hours, catch up on the posts and contribute in some small way.
Now, with approx 1500 members it is a "city" (and I am sure it will be a "mega-city" soon) . If I am away for a few days there are hundreds and hundreds of posts and it takes 5 or 6 hours to catch up on them, let alone write any responses. I am at a loss at how to contribute.....which to respond to?? And anyway in most cases I have nothing significant to add to what has already been said. The rational discussions are well taken care of. But, but..... I do feel bad not to have done a "hug" to all, new and old, who are suffering...... there is so much suffering I do not know where to start.
But I do (eventually) read all posts and I do pray for and hug you all.......... And I clearly see there are saints (new and old here) who do respond, keeping the information flow, spirit and love of this community alive.
I am so thankful to you all and to Tex especially, who has seamlessly moved from "Village Headman" to "Mayor of the City".
Love ant,
P.S. I had planned an update on my medical status and will do so soon. I had wanted to give a positive update in February, but then went into a flare and had to take some actions (increasing my entocort back up to 2 pills (6mg) a day). I seem now to be coming out of the flare and am back down to 1 pill (3mg) a day
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
What a wonderful description of this board--a city now, instead of a village (and Tex as a mayor). I too, have found it a life-saver or at the very least, a sanity-saver, when I felt betrayed by the medical community and had nowhere to turn.
I am a fairly new member and have enjoyed your contributions whenever, wherever you can make them. I would hope that those of us who are recent newcomers all realize that every person is not able to help us every time we have a question. I feel lucky to hear from anyone who has the time to share their experience.
I am glad that your flare was short-lived and back under control.
I am a fairly new member and have enjoyed your contributions whenever, wherever you can make them. I would hope that those of us who are recent newcomers all realize that every person is not able to help us every time we have a question. I feel lucky to hear from anyone who has the time to share their experience.
I am glad that your flare was short-lived and back under control.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Hi Ant,
What a beautiful post - it made me choke up. You have expressed with eloquence, humor and sincerity what has often gone trough my mind - thank you so much for taking the time to write such a thoughtful post.
And Tex - I cannot thank you enough for all you do here - with your constant presence and patience in helping everyone, you are surely changing lives!!!
Love,
Kari
What a beautiful post - it made me choke up. You have expressed with eloquence, humor and sincerity what has often gone trough my mind - thank you so much for taking the time to write such a thoughtful post.
And Tex - I cannot thank you enough for all you do here - with your constant presence and patience in helping everyone, you are surely changing lives!!!
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
- MBombardier
- Rockhopper Penguin
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- Location: Vancouver, WA
Terrific post Ant. I feel the same way-- so many posts, so little time. And so much wisdom is shared by others there's often not much to add that is different. Still it's always a pleasure to hear from you and others anytime they have a minute to share.
Carol
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
- MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Dear Friends,
In another thread Leah said:
I wonder if it is OK to take 3mg entocort a day + antihistamines? And if so which antihistamines are best? Also, assuming the antihistamines work (I do not have classic histamine allergy symptoms so I may be barking up the wrong tree), I am thinking I should try and stay on them as a treatment and taper down the entocort..... if possible to zero.
Since my GF, DF, LF, NF, EF diet is still not quite doing it for me (maybe my social lifestyle exposes me to too much cross-contamination) I wonder if a long term (possibly permanent) daily intake of antihistamines is better than long term (low dosage) use of entocort?
Best wishes, Ant
In another thread Leah said:
I am wondering if antihistamines could also be "the last piece of the puzzle" for me. I had weaned down to 3mg (one pill) of entocort every other day and then went into a flare (I think accidental consumption of dairy did it). I am now (one month later) on 3mg entocort a day, and while out of the flare, I can tell all is not well (mild bloating, more urgency then should be, flaky BMs about 5 times a day, the sense that I could at any moment go back to a full watery-D flare).Tex is right about the histamines because after he said something about it, I started taking an antihistamine and my BMs go more solid. It was like the last piece of the puzzle.
I wonder if it is OK to take 3mg entocort a day + antihistamines? And if so which antihistamines are best? Also, assuming the antihistamines work (I do not have classic histamine allergy symptoms so I may be barking up the wrong tree), I am thinking I should try and stay on them as a treatment and taper down the entocort..... if possible to zero.
Since my GF, DF, LF, NF, EF diet is still not quite doing it for me (maybe my social lifestyle exposes me to too much cross-contamination) I wonder if a long term (possibly permanent) daily intake of antihistamines is better than long term (low dosage) use of entocort?
Best wishes, Ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
ANT!!!!
How nice to see your face after all these years! Handsome fellow! I am a fellow wine-lover, too - mostly heavy reds but also pinot grigrio.
I found histamine blockers to be very helpful. Also MRT. If you ever have the opportunity to get that test, it may help to fine tune your diet to the point that you need no meds. I never would have guessed those "everyday" foods that I tested positive for - mango, carrot, yellow squash (but not zucchini), white potato, sesame, etc.
Love,
Polly
How nice to see your face after all these years! Handsome fellow! I am a fellow wine-lover, too - mostly heavy reds but also pinot grigrio.
I found histamine blockers to be very helpful. Also MRT. If you ever have the opportunity to get that test, it may help to fine tune your diet to the point that you need no meds. I never would have guessed those "everyday" foods that I tested positive for - mango, carrot, yellow squash (but not zucchini), white potato, sesame, etc.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.