OT - About my OTs, Help Needed

Julie_Snowshoe wrote:
(I think everyone might find the
story interesting):

http://www.butyoudontlooksick.com/ar...e-miserandino/

I'm not CN, but I want to thank you, Julie, for posting this
link. As someone with a relatively invisible disability, I often
point friends & others to this link, as it explains so much.

Deborah

On 8/17/2011 10:42 PM, Julie_Snowshoe wrote:
On Aug 17, 11:15 pm, wrote:
On 8/17/2011 9:52 PM, Julie_Snowshoe wrote:









On Aug 17, 5:52 pm, wrote:
I'm not being over-sensitive here, I'd like some advice.

I know I "OT" a lot - probably twice as much or more as anyone else
here. I'd rather not do that because it *does* cause some frustration
and I'd just rather not do that to anyone. Some of you may be WWW savvy
enough to help me with the questions at the bottom of this post.

The problem I'm having is that I've *tried* to find other forums about
support for the things I'm going through and they're either 1) so seldom
used that the last posts in some are from 2010 - it won't do a bit of
good to subscribe to a group that nobody else uses, and 2) like the ones
for depression, they are so toxic with trolls and just plain insensitive
people that the group ends up *hurting* those who go there for help.

The other problem I have is that what I have is so damned rare that
nobody, except certain scientists, even know it exists.

There *are* active RSD forums, and I've been there, but it's just sort
of the same things said over and over - there really is no help to be
had because there's just nothing anyone can do about it.

I haven't seen a single forum about the MTHFR gene mutation, but there
may be some about the things the mutation cause like "ischemic bowel
disease", "ileostomy", "spontaneous blood clots" (although that's pretty
rare in itself), etc. But I just haven't found them. Does anyone know
how to find groups (Google didn't do it for me).

So... if I start a group or a blog about any of the above, Does anyone
know how I can get people to know about it and participate?

Any advice would be greatly appreciated.

--
Hugs,

CatNipped
See all our masters at: http://www.PossiblePlaces.com/CatNipped

See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:http://www.professional-geek.net/rpcablog/

Email: L(dot)T(dot)Crews(at)comcast(dot)net

Lori,

When you post OT here, you aren't searching for specific information
on the disease you have. You come here and post OT for emotional
support. That's what we're here for, but your post said you've tried
to find active support groups. You have to decide if what you want is
a support group for your specific disease or a support group of people
who can truly understand - and face it, most of us can't. Have you
ever read the story at the following link (?) and if not, stop now and
read it before you respond to my post (I think everyone might find the
story interesting):

http://www.butyoudontlooksick.com/ar...hristine/the-s...

Now, assuming you've read that, you'll probably think, "Wow, I can so
totally relate...or a year ago or two years ago I could relate but my
disease has progressed past that point." I'm going to tippy toe
around this one, but the point I'm making is that there are many
people that suffer similar day to day emotional issues. Rather than
trying to find an active support group for people who have RSD, look
for an active support group of people who suffer similar pains,
similar frequency have similar emotional challenges. You may be able
to find the support you need that way.

Begin that search by looking he

http://www.butyoudontlooksick.com/boards/index.php

This said, I'm not saying we don't want you here - or that I don't
want you here - I'm just trying to help you find the support that you
asked for in your original post.

hugs
Julie

Thank you Julie, that was exactly what I was asking and I didn't take
offense (and you *never* have to tippy toe around me, I've known you
long enough to know your innate kindness and generosity). That's the
first time I've ever read the spoon story and, you're right, I can
relate. And it may help me explain things to the people around me who
get tired of dealing with my illness (but can then go back to their
"normal" lives and are able to forget about it for most of the time, but
they can *never* know what it's like to deal with it *all* of the time).

--
Hugs,

CatNipped
See all our masters at: http://www.PossiblePlaces.com/CatNipped

See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:http://www.professional-geek.net/rpcablog/

Email: L(dot)T(dot)Crews(at)comcast(dot)net

I was directed to that site from someone who has lupus, but as I was
exploring the forum to see if it was something that you might find
comfort with I found posts from people with all types of illnesses
that result in acute and chronic pain, severe symptoms similar to
yours, depression - all of the symptoms that you might expect and many
that you've experienced. Check out the forum section, maybe start in
the introductions and see if they might give you some emotional
support. Their issues are not confined to lupus.

hugs
Julie

I just registered and posted my first post on the "New Members - Say
Hello" forum. Again, thanks for this reference! From the little I've
read it sounds like a lovely supportive group.

--
Hugs,

CatNipped
See all our masters at: http://www.PossiblePlaces.com/CatNipped

See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:
http://www.professional-geek.net/rpcablog/

Email: L(dot)T(dot)Crews(at)comcast(dot)net

CatNipped wrote in news:9b335aFkq2U1
@mid.individual.net:

Thanks Hop! I would never have found those links on my own. I'll try
slogging through it, at this point any information at all would help.
Unfortunately I haven't found a doctor who was willing to really discuss
this with me to help me understand what's going on and what I can expect
in the future.

As far as RL support groups, I don't think there are any in Houston, I"d
tried looking for them and found a few links, but they were all
abandoned. At this point I think I'm going to settle on finding a good
psychiatrist to see if he can help with these mood swings and depression.

Again, thanks for all that effort, it's really appreciated.


hey catnipped i font mind your OT stuff, if i am not interested i wont read
it, but i wont kill file you either unlike that rude person, i reserve my
kill files for trolls.

CatNipped wrote in news:9b2rhuFsgU1
@mid.individual.net:

I'm not being over-sensitive here, I'd like some advice.

I know I "OT" a lot - probably twice as much or more as anyone else
here. I'd rather not do that because it *does* cause some frustration
and I'd just rather not do that to anyone. Some of you may be WWW savvy
enough to help me with the questions at the bottom of this post.

The problem I'm having is that I've *tried* to find other forums about
support for the things I'm going through and they're either 1) so seldom
used that the last posts in some are from 2010 - it won't do a bit of
good to subscribe to a group that nobody else uses, and 2) like the ones
for depression, they are so toxic with trolls and just plain insensitive
people that the group ends up *hurting* those who go there for help.

The other problem I have is that what I have is so damned rare that
nobody, except certain scientists, even know it exists.

There *are* active RSD forums, and I've been there, but it's just sort
of the same things said over and over - there really is no help to be
had because there's just nothing anyone can do about it.

I haven't seen a single forum about the MTHFR gene mutation, but there
may be some about the things the mutation cause like "ischemic bowel
disease", "ileostomy", "spontaneous blood clots" (although that's pretty
rare in itself), etc. But I just haven't found them. Does anyone know
how to find groups (Google didn't do it for me).

So... if I start a group or a blog about any of the above, Does anyone
know how I can get people to know about it and participate?

Any advice would be greatly appreciated.


I don't mind your OT posts. In fact, they make me realize how lucky I am
and I should be grateful.

Bobble

CatNipped wrote in rec.pets.cats.anecdotes:
Julie_Snowshoe wrote:


When you post OT here, you aren't searching for specific information
on the disease you have. You come here and post OT for emotional
support. That's what we're here for, but your post said you've
tried to find active support groups. You have to decide if what
you want is a support group for your specific disease or a support
group of people who can truly understand - and face it, most of us
can't.

(snips)

Thank you Julie, that was exactly what I was asking and I didn't take
offense (and you never have to tippy toe around me, I've known you
long enough to know your innate kindness and generosity). That's the
first time I've ever read the spoon story and, you're right, I can
relate. And it may help me explain things to the people around me
who get tired of dealing with my illness (but can then go back to
their "normal" lives and are able to forget about it for most of the
time, but they can never know what it's like to deal with it all of
the time).

I know how you feel in many ways. If you'll recall, we met in a
support group. That one, wasn't right for me so I stopped pulling it
but it worked well for others.


--

Julie_Snowshoe wrote in rec.pets.cats.anecdotes:


http://www.butyoudontlooksick.com/ar...istine/the-spo
on-theory-written-by-christine-miserandino/

BTW Julie, that's a great story. I'm spoon hording today after
overdoing it earlier in the week. I knew it at the time but I needed
some nice mother-daughter time so it was worth it!

What the article misses to an extent is that part of it. That
sometimes you do over-extend knowingly (still, within reason though)
because you can't just sit at home every day.

Part of what Lori needs is a truely effective pain management clinic
(and I don't mean drugs but the emotional management side of it).
Clinical depression is very common among pain suffering people and some
are more affected than others. Some need more help with it and some
just naturally have it or gain it very young due to adversity as a
child. Lori is the first type and I am the second.

It's sometimes painful when she and I talk together because we both
inately know this about one another and have for years.

I wish to hell I could teach it to her. We'd both need a support group
site to post on to at least even *try* and it has to be one she's
comfortable with.

On 8/18/2011 7:04 AM, john sumner wrote:
wrote in news:9b335aFkq2U1
@mid.individual.net:

Thanks Hop! I would never have found those links on my own. I'll try
slogging through it, at this point any information at all would help.
Unfortunately I haven't found a doctor who was willing to really discuss
this with me to help me understand what's going on and what I can expect
in the future.

As far as RL support groups, I don't think there are any in Houston, I"d
tried looking for them and found a few links, but they were all
abandoned. At this point I think I'm going to settle on finding a good
psychiatrist to see if he can help with these mood swings and depression.

Again, thanks for all that effort, it's really appreciated.


hey catnipped i font mind your OT stuff, if i am not interested i wont read
it, but i wont kill file you either unlike that rude person, i reserve my
kill files for trolls.

Thank you John. I don't always respond to all posts, but I read them
all and I've enjoyed all of yours so far. You sound like a very kind
and sensitive person and you are very welcomed here.

--
Hugs,

CatNipped
See all our masters at: http://www.PossiblePlaces.com/CatNipped

See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:
http://www.professional-geek.net/rpcablog/

Email: L(dot)T(dot)Crews(at)comcast(dot)net

On 8/18/2011 10:23 AM, cshenk wrote:
CatNipped wrote in rec.pets.cats.anecdotes:
Julie_Snowshoe wrote:


When you post OT here, you aren't searching for specific information
on the disease you have. You come here and post OT for emotional
support. That's what we're here for, but your post said you've
tried to find active support groups. You have to decide if what
you want is a support group for your specific disease or a support
group of people who can truly understand - and face it, most of us
can't.

(snips)

Thank you Julie, that was exactly what I was asking and I didn't take
offense (and you never have to tippy toe around me, I've known you
long enough to know your innate kindness and generosity). That's the
first time I've ever read the spoon story and, you're right, I can
relate. And it may help me explain things to the people around me
who get tired of dealing with my illness (but can then go back to
their "normal" lives and are able to forget about it for most of the
time, but they can never know what it's like to deal with it all of
the time).

I know how you feel in many ways. If you'll recall, we met in a
support group. That one, wasn't right for me so I stopped pulling it
but it worked well for others.



Yes, I do remember. You're the one thing (maybe the only thing) that
came of that experience for me that was very positive and good. I'm not
welcome there any more so unsubscribed a long time ago. It's a shame,
because it was the only newsgroup I found for chronic pain support -
it's a shame the group itself was a pain in the a$$! ;

I know I tend to whine more than most. But I also just talk and write
more than most also, but like everything in life the bad is *always*
noticed while the good is often just ignored or taken for granted. Not
whining about that, just noting a fact of life.

--
Hugs,

CatNipped
See all our masters at: http://www.PossiblePlaces.com/CatNipped

See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:
http://www.professional-geek.net/rpcablog/

Email: L(dot)T(dot)Crews(at)comcast(dot)net

On 8/18/2011 10:52 AM, cshenk wrote:
Julie_Snowshoe wrote in rec.pets.cats.anecdotes:


http://www.butyoudontlooksick.com/ar...istine/the-spo
on-theory-written-by-christine-miserandino/

BTW Julie, that's a great story. I'm spoon hording today after
overdoing it earlier in the week. I knew it at the time but I needed
some nice mother-daughter time so it was worth it!

What the article misses to an extent is that part of it. That
sometimes you do over-extend knowingly (still, within reason though)
because you can't just sit at home every day.

Part of what Lori needs is a truely effective pain management clinic
(and I don't mean drugs but the emotional management side of it).
Clinical depression is very common among pain suffering people and some
are more affected than others. Some need more help with it and some
just naturally have it or gain it very young due to adversity as a
child. Lori is the first type and I am the second.

It's sometimes painful when she and I talk together because we both
inately know this about one another and have for years.

I wish to hell I could teach it to her. We'd both need a support group
site to post on to at least even *try* and it has to be one she's
comfortable with.

You are *SO* right about that. Fortunately or unfortunately, I come
from a family that is totally, disgustingly healthy. It's very, very
seldom that one of them even gets a cold, much less the flu. There are
no chronic diseases in my family, my grandmother lived to be 104 and at
her 100th birthday celebration she got up and danced with one of the
band members. To the very day of her death (a stroke while she slept)
she didn't even use a cane or a walker. My mother is 86 and she bowls
on a league once a week, goes line dancing once a week, rides the
exercise cycle in her rec room for half and hour every day, and walks
about 5 miles every day. She's always out and about shopping and going
to the casinos and bus trips with the AARP. She doesn't even have
osteoarthritis or achy joints - she has no aches and pains *at all*.

My two older brothers are very active in any number of activities and
travels, and my husband has never been sick a day in his life until his
recent heart attack, and even that only kept him down for a week or so.
My former best friend doesn't "believe" in doctors and hasn't taken a
single prescription medication in her life. She "broke up with me"
because I didn't call her as much as she called me because I was "always
in bed by the ridiculous time of 9PM and couldn't stay up to a decent
hour to talk". She said the friendship had gotten too one-sided. That
said among other *MUCH* more hurtful and untrue things (she *was* drunk
at the time, she was *always* drunk after 7PM which is the real reason
*why* I didn't call her, it was too stressful to put up with her drunken
anger - she is a "mean drunk").

So there is *nobody* in my RL who has any inkling of an idea of what I
go through every day. They believe that I'm just being a) lazy, b)
overly dramatic, c) seeking attention or d) being a hypochondriac. They
get very impatient with me, angry when I can't do something they want to
do, and tired "listening to me whining all the time".

--
Hugs,

CatNipped
See all our masters at: http://www.PossiblePlaces.com/CatNipped

See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:
http://www.professional-geek.net/rpcablog/

Email: L(dot)T(dot)Crews(at)comcast(dot)net

On 8/18/2011 9:13 AM, Bobble wrote:
wrote in news:9b2rhuFsgU1
@mid.individual.net:

I'm not being over-sensitive here, I'd like some advice.

I know I "OT" a lot - probably twice as much or more as anyone else
here. I'd rather not do that because it *does* cause some frustration
and I'd just rather not do that to anyone. Some of you may be WWW savvy
enough to help me with the questions at the bottom of this post.

The problem I'm having is that I've *tried* to find other forums about
support for the things I'm going through and they're either 1) so seldom
used that the last posts in some are from 2010 - it won't do a bit of
good to subscribe to a group that nobody else uses, and 2) like the ones
for depression, they are so toxic with trolls and just plain insensitive
people that the group ends up *hurting* those who go there for help.

The other problem I have is that what I have is so damned rare that
nobody, except certain scientists, even know it exists.

There *are* active RSD forums, and I've been there, but it's just sort
of the same things said over and over - there really is no help to be
had because there's just nothing anyone can do about it.

I haven't seen a single forum about the MTHFR gene mutation, but there
may be some about the things the mutation cause like "ischemic bowel
disease", "ileostomy", "spontaneous blood clots" (although that's pretty
rare in itself), etc. But I just haven't found them. Does anyone know
how to find groups (Google didn't do it for me).

So... if I start a group or a blog about any of the above, Does anyone
know how I can get people to know about it and participate?

Any advice would be greatly appreciated.


I don't mind your OT posts. In fact, they make me realize how lucky I am
and I should be grateful.

Bobble

Thank you Bobble, I am so glad you feel that way. I loved reading the
story of "The Spoon Theory" because there *are* two sides to it... the
perspective on the person dealing with a chronic illness, and the
realization of a healthy person of all the things they may take for
granted and should cherish about their lives.

--
Hugs,

CatNipped
See all our masters at: http://www.PossiblePlaces.com/CatNipped

See the RPCA FAQ site, created by "Yowie", maintained by Mark Edwards, at:
http://www.professional-geek.net/rpcablog/

Email: L(dot)T(dot)Crews(at)comcast(dot)net