Re: Instant messages maybe

[Guest guest]

You know, this subject seems to pop up about every six months or so for

some reason. My personal feeling/opinion on the matter is that this is a

SUPPORT group. I know that the support I've received here is invaluable,

and I know many others feel the same.

Support comes in many forms, including emotional and informational. If

one only wishes to hear about what treatments are available or what the

symptoms are, then there are hundreds of links available in the Links

section on the website. But to get emotional support, you need some " back

and forth " dialogue among the group members.

In the time I've been on the board, I have become friends with people in

this group, as I know many others have as well. And, like many others, I

communicate privately with them, away from the group setting. But there

are many communications that go on that are a part of the group as a

unit... little " inside jokes " and such that help to form a common bond

between us, which feeds into a sense of emotional unity, which translates

into a feeling of emotional support.

I recently joined another support group for a different disorder, and I

was immediately struck by the different make-up of the group compared to

this one: 75% of the posts seem to be people posting ads for various

nutritional products, etc. The people who are posting " regular " messages

seem nice enough, but the board just doesn't have the same " warm fuzzy

feeling " as this board does.

When a thread is started on an off-topic subject, or if a thread " changes

course " partway through and gets really long-winded, someone usually puts

" OT " in the subject line. This is a Red Flag to the reader that the

discussion is Off Topic, and people who are too busy to read the emotional

support stuff can simply skip those posts altogether.

So that's my two-cents' worth on the subject. I consider the members that

I've met here to be a part of my " achalasia family " and as long as nobody

is being abusive, I know that I wouldn't censor my family. My time is

pretty valuable too, but my friends and family are even more valuable to

me, and I'll " waste my time " on them any day of the week.

Debbi in Michigan

> I have been a long time reader of this board. This group is very

> helpful to me. During the past 3 years I've gotten a lot of

> information.... but my time is valuable. I've never registered

> before, just now I can't help but make a request, could some of the

> regular posters who communicate with each other on the board switch

> to instant messages or private messages. The chit chat back and

> forth makes a lot of reading for those of us who never post. Through

> the years most messages concern treatment, symptoms etc. but lately

> the messages seem to be very full of casual communication between a

> few.

>

> I have to believe I am speaking for others, but please keep the chit

> chat off the board, just as a courtesy to those of us who have time

> constraints.

[Guest guest]

Hi Notan,

I sure had to chuckle at this post. (Not your post, the original)

I am so guilty of being a chatty female :-)

If this group was strictly about medical terms and statistics, I wouldn't be a member. I appreciate the fact that I am "allowed" to mention when I've had a particularly bad day. I have spent hours in the bathroom vomiting while my family has peacefully slept. I have fainted on my kitchen floor only to wake up shortly before my kids come home from School. Does my family know? No. I can't tell my husband when I have a horrible day, as he would worry about me all day. I've learned to deal with Achalasia, but still need the support of many members of our group. I have even written OT messages about my 12 year old oppositional defiant / ADHD boy I'm looking after until the end of this School year, and other foster children I have in my home. I am grateful to all those who support us all and offer terrific advice.

Notan, I truly appreciated your response.

Debbie, the same goes for you. I enjoy hearing /Hockey stories. I was laughing when I read about Thelma and Louise. That was terrific!!!

.

OT: Instant messages maybe

achyeso wrote:

lately the messages seem to be very full of casual communication between a few. I enjoy the technical messages and those that provide tips and information on resources. However, if I had to pick out the best bit of information this group has provided, I would say it is one that I don't know if it has even been put into words here. Life goes on and people are still beautiful. That's it. I don't know if you are male or female. Though not always true, women tend to be more chatty. I know men that can't stand to be around women being chatty. But, I think, it is good that babies cry, kids act like kids, pregnant women are big and round, and women are chatty. These are all beautiful things. I wish everyone could see the beauty, all the time.Back to the point. In spite of achalasia life goes on and messages that include life's details, (who and how many are pregnant, stories, poems, jobs, and interests), let us know that life is good and people can still be beautiful, even if they have achalasia. I suggest you do what people do in the noise of life, focus. Also, take some time now and then to listen to the noise of life. There is some wonderful music in that jazz.As to time being short. There is never enough. I end up posting messages at odd times when I would be unlikely to find anyone from here in chat, and even if they were there, I don't do chat (instant messaging). Not the same thing at all.You achalasians are a beautiful group. (Where did I put those bell bottoms jeans.) ;-)notan

[Guest guest]

wrote:Debbie, the same goes for you. I enjoy hearing /Hockey stories. I was laughing when I read about Thelma and Louise. That was terrific!!!, I'm SO GLAD that you (and others) enjoy the lighthearted stuff too.

I know you can't please all of the people all of the time, and there are always going to be some people who don't like to hear something that I have to say, and some even feel the need to berate me (and others) publicly or privately for saying things that they didn't want to hear. Life is too short to get all worked up over petty things..... some people "get that" and some don't, huh?

Deb, who took to another hockey game this weekend, as a matter of fact! LOL

[Guest guest]

wrote:

I

have even written OT messages about my 12 year old oppositional defiant /

ADHD boy I'm looking after until the end of this School year, and other

foster children I have in my home. I am grateful to all those who

support us all and offer terrific advice.

I am grateful for what you have shared with us. It

sounds like your achalasia is about as bad it gets, and yet, you are able

to do what so many in perfect health would not think themselves able to

do. You are an inspiration.

notan

[Guest guest]

Ya know, I think there are a LOT of inspirational people in this group, people who triumph in the face of adversity, etc.

Maybe achalasia only happens to people who are strong enough to handle it???

Debbi, who totally agrees w/ notan's perceptions of both and Joan!

I am grateful for what you have shared with us. It sounds like your achalasia is about as bad it gets, and yet, you are able to do what so many in perfect health would not think themselves able to do. You are an inspiration. notan