This is going to be a really great year for ICAMA. I have exhaustingly discussed my
numerous goals for it and I am going to do my best to make them happen this year.
I think the energy I am putting out, as does happen in life, is coming back to me
100 fold. Suddenly help is coming from everywhere.
A new manual will be being posted on FAQ and helpful hints early in treatment, thanks
to one of my patients, who will remain anonymous unless she tells me it is ok to disclose
her identity. That will be here soon.
Another of my patients and her family are starting a fundraising project that they call
"Kelly's Cause"-this will go to help ICAMA in anyway that they decide. But, what ever the help, it is very generous and I am very grateful!
Last, but not least. Another patient was brainstorming and came up with some suggestions on how the ICAMA chat room could be better organized. This is the part I need some input on from all of you. I think her suggestions are really wonderful, but...as all of you know, I do not visit the chat rooms, so, I don't know how each of you feel regarding its present organization and function.
This particular patient feels it is too overwhelming for her to sort through and sift through-that it is not user friendly. Please comment on this for me, so that I don't change something that for others is working well. If everyone agrees, I will make some changes a bit at a time and see how everyone feels.
Thank you for all of your help everyone.
Matia, Dr. B
Comments
Kellys cause sounds awsome so
Kellys cause sounds awsome so great to hear that news.
I am excited to see the new manual I think its a great idea and much needed
Now you say ''Chat Room'' will be more orginzed are you refering to the board? bc there is no chat room.
I would love an acutual chat room
I do think that there should be things added to the site such as a new patient section maybe at the top of the forum or under the menu by the product guide. This should list the commn newbie questions that accur esp when first starting such as the diet, and the flight to LA, hotell ect. general rules and guide lines such as how much meat to eat how much water . the importance of the types .it seems like a lot of the same thing is rehashed every time we get a newbie on. I don't mind but it would be nice if posts didn't get so lost in the mix. It might be nice to have more subject tabs.I know a lot of the old blogs have great info about why the water is so important. I know some of the new patients get shocked by all the change that undergoes. Like there is a lack of understanding on why prior to treatment someone may have been able to tolerate things that they can't seem to tolerate now that the detox has began and maybe they thought they were toerating something when all along they weren't. I think a lot of patients just arent mentally prepaired for everything that happens and I know don't even know how to allow to cut them selves the slack needed to heal. Learning to love yourself is a big part of treatment and I remeber this was talked about a lot about a yr ago but we haven't really talked about it in a while. There is a lot of struggle in this area.
I hope i didn't go too off the board .
nicole
an annoncement tab
sucess stories or acomplshment tab ie we have a the little things positve thread it would be nice to have it in a subject so its there for people to see when they come to the site. other wise they will only search some word or see what is currently there.
Nicole
Thank you for all of the input, this is very helpful
Forum Rooms
I was the one who contacted Matia because I was having trouble navigating the forum. I have Chronic Fatigue Syndrome aside from IC which affects my brain and sometimes makes me ditzy, so at first I thought it was just me. Then I realized that it was the categories. When I was searching for info on a subject such as skin products, dentistry or food it all seems to be under one category " General Health, and I found myself clicking next and next and next and having difficulty finding the articles I was looking for. I made the suggestion to Matia to possibly branch out and create more specific rooms in the forum such as FOOD and Nutrition. That topic in itself is an endless topic and I think deserves its own room. I'm wondering if there are others that feel the same way???
Gentle Products Guide + User Forum Categories
(1) Gentle Products Guide > Make separate pages for foods and products. Add missing foods (i.e. nuts, seeds, oils, etc.) to appropriate diet lists.
(2) Re: expanding the User Forum categories, I reviewed all the posts in the User Forum section, and here are the main categories they fall under:
Having lots of categories could be a pain to create, or too cumbersome to use?, but would also make searching for relevant content so much easier, which I think is part of the problem. And archiving the existing forum topics would be pretty easy.
Wow!
Thank you for going through this Lisa. Ceci had suggested creating many different categories, many of which are a part of your list. But, knowing what things are already being discussed helps even more.I will get to work on all of this.
not sure if i understand
I'm not sure if I understand Lisa correctly. Are you suggesting 30 seperate rooms in the forum. I think there needs to be a balance of categories, too little is hard to navigate, but too much might be overwhelming. I was thinking about 10 rooms . That is my two cents. I'm just brainstorming here, or....maybe with Lisa's idea, maybe there could be subcategories within the top main 10 rooms to make it cleaner. Such as a food category and then once you click on food, then have a subcatoegory of recipes, eating out, water etc. Maybe that is what she meant by the hyphen?? Also I did not understand the suggestion made about ICAMA support calls, what does that mean? I really liked Lisa's idea of creating a room for related conditions such as IBS, Fibro, Vulvodynia. or as she called it" Concurrent Health Issues". I think there are a lot of people out there that don't realize that these things are related. It was not until I started participating in ICAMA that I realized how many other people there are that have IC that are also struggling with these conditions, and I think its important that people know.
Also, I have MAJOR brain fog, ditziness, so maybe I missed it. I don't remember seeing an explanation of the importance of avoiding chlorine bleach for ICers. I did not know until I met Matia that going into a swimming pool, jacuzzi, is a no-no. I did not know that the chlorine bleach in pads and tampons is a potential irritant. I think there needs to be a clear explanation of what things can be irritants for IC patients and what to avoid and look out for. Even though under the gentle products guide there is a list of some cosmetics, there is no explanation what ingredients to look out for. I think there should be a clear list of cosmetic and cleaning product ingredients to watch out for when reading labels. Also Matia mentioned that one of the patients created a manual, did I miss it? I did not see any manual on the website.
I hope that I'm not the only one here with Brain fog, and need things spelled out relaly clearly.This is exciting to me, that finally people suffering with IC and related illnesses will have a place to get alternative information rather then the generic info that is online.All the bestCecilia
Cecilia
I wasn't suggesting any # of rooms... was only compiling info so Matia can best decide how to arrange the rooms. Could just do main categories or include subcategories within them.
The ICAMA Support Calls category is there b/c sometimes there are posts on questions to ask on the calls, arrangements to chat after the calls, etc.
Yes, a manual is in the process of being created -- it is not done so not on the website yet.
Re: potential irritants, yes, we should have a list of the things to avoid during treatment (or until Matia gives the ok) like chlorine pools, massages, etc. And yes, we should have list of ingredients that IC'ers in treatment should avoid in cosmetic & house products (i.e. Vitamin E, etc.) As for ingredients to avoid for general health, there are so so many + many that masquerade under many aliases.... would take Matia a lot of time.... so maybe could just have links to sites that have this info, like: http://www.goodguide.com/, http://www.thegreenguide.com/, http://www.cosmeticsdatabase.com
Hope this answers your q's!
response to IC Hope
Hl Lisa,I understand now about your list.If I understand correctly there is a support group over the phone? Is that what you mean by calls? I was under the impression the support group met in person. Is this something that I could participate in? How can I find out more info?Yes and when I wrote potential irritants I was referring to IC, not to general health.Thanks Lisa!
Support calls
Yes, there is a monthly support call. (It used to also meet in person in LA but looks like no longer). The next one is this Friday 4-6pm. Matia always posts on her blog when the upcoming one will be. Contact Lynn/Raquel at Bomamed directly to get the call-in information.
Yours-Lisa
I'm so glad to help and I
I'm so glad to help and I can't wait to see it in action :)
Great Idea
I would love a category for cosmetics. Especially a list of ingredients to avoid. I would especially like to see if we could add another department store base, concealer, and powder option. Covergirl and Myabelline have a limited color selction. Origins is hard to find in many places and is higher priced than Clinique and Mac.