Re: never get a reply,ever

[Guest guest]

sorry you are feeling like no one is listening. I read your message, and want you to know that i heard you. It's never the intention here to leave someone out, so i apologize for us all.

ruth

mom to Mitch (9 1/2) and Lexi (6 1/2) both mito affected and my treasures

[Guest guest]

sorry you are feeling like no one is listening. I read your message, and want you to know that i heard you. It's never the intention here to leave someone out, so i apologize for us all.

ruth

mom to Mitch (9 1/2) and Lexi (6 1/2) both mito affected and my treasures

[Guest guest]

Are you mad at us? Is that what I am gathering? I have looked back

at the archives and have seen that you have asked only two (that I

could find) questions. One was answered and one was not (yestarday).

If it was not responded to, it was because we don't know. We really

try to help everyone and when we don't know, we let those who do

answer and sometimes that is no one. Sometimes on a weekend it is

really quiet too, so if you ask a question then you may want to

repost it on a Monday. Please don't feel upset,it is not a personal

thing.Sometimes we are on this list everyday and then others it is

very quiet and we get very busy with our kids (esp. during flu

season). If you feel your question is not answered, ask again. We'll

try to help. Sorry if you are upset.make yourself heard!

Dawn

[Guest guest]

Are you mad at us? Is that what I am gathering? I have looked back

at the archives and have seen that you have asked only two (that I

could find) questions. One was answered and one was not (yestarday).

If it was not responded to, it was because we don't know. We really

try to help everyone and when we don't know, we let those who do

answer and sometimes that is no one. Sometimes on a weekend it is

really quiet too, so if you ask a question then you may want to

repost it on a Monday. Please don't feel upset,it is not a personal

thing.Sometimes we are on this list everyday and then others it is

very quiet and we get very busy with our kids (esp. during flu

season). If you feel your question is not answered, ask again. We'll

try to help. Sorry if you are upset.make yourself heard!

Dawn

[Guest guest]

What kind of reply are you looking for? You have given some wonderful

input for families. They may not use your name, but I know people reply

to messages in many different ways. Guide us in what you are looking

for in a reply. I know you are from a different country and it would be

interesting to learn how they treat medical issues where you are from.

And how is the education system for kids with special needs in your

country?

Nerenhausen

mom to Leah

ayesha wrote:

>hi all

>i am mad as i never get a reply . ;((((((

>

>

>

>

>

>

>Please contact mito-owner with any problems or questions.

>

[Guest guest]

What kind of reply are you looking for? You have given some wonderful

input for families. They may not use your name, but I know people reply

to messages in many different ways. Guide us in what you are looking

for in a reply. I know you are from a different country and it would be

interesting to learn how they treat medical issues where you are from.

And how is the education system for kids with special needs in your

country?

Nerenhausen

mom to Leah

ayesha wrote:

>hi all

>i am mad as i never get a reply . ;((((((

>

>

>

>

>

>

>Please contact mito-owner with any problems or questions.

>

[Guest guest]

Ayesha,

Hello, I just wanted to tell you that I DO read your posts and often think of

responding, I just simply don't have time. I have to set my priorities and at

this point. I can barely stay in contact with my close friends via email, much

less make a response online. I do have 2 very sick little boys and they do have

a great deal of set backs. One of them has with bone marrow failure (as there

are only a few of us on the list who deal with this problem)BUT I don't consider

my children to be any sicker than the other children here. Any child can take a

turn for the worse and die in a minute... no matter what their given

presentation is. A mitochondrial disease is just THAT.. No predictions

available!

Anyway.. I do read your posts and you are often thought of.. and I can only

speak for myself when I say that my children are my priority. I LOVE the inernet

& friends I have gained from it I feel they are alive today because of it but

simply cannot become consumed in daily communication. I have a feeling there are

a lot of other people who also read and feel the same way. So, rest assured, you

are heard and I am sorry you havent gotten any reponses. It just may be that

those who are NOT emailing are having a very hard time at the moment. I can tell

you now, that I am certainly in no position nor do I have time to even be doing

this but feel this needs to be addressed.

So, if you feel the need, keep posting. Surely, you'll connect with someone.

Just try again or at another time.

Peace,

Krystena R.

>

> Date: 2004/11/09 Tue AM 10:29:31 EST

> To: Mito

> Subject: never get a reply,ever

>

>

hi all

i am mad as i never get a reply . ;((((((

Please contact mito-owner with any problems or questions.

[Guest guest]

Ayesha,

Hello, I just wanted to tell you that I DO read your posts and often think of

responding, I just simply don't have time. I have to set my priorities and at

this point. I can barely stay in contact with my close friends via email, much

less make a response online. I do have 2 very sick little boys and they do have

a great deal of set backs. One of them has with bone marrow failure (as there

are only a few of us on the list who deal with this problem)BUT I don't consider

my children to be any sicker than the other children here. Any child can take a

turn for the worse and die in a minute... no matter what their given

presentation is. A mitochondrial disease is just THAT.. No predictions

available!

Anyway.. I do read your posts and you are often thought of.. and I can only

speak for myself when I say that my children are my priority. I LOVE the inernet

& friends I have gained from it I feel they are alive today because of it but

simply cannot become consumed in daily communication. I have a feeling there are

a lot of other people who also read and feel the same way. So, rest assured, you

are heard and I am sorry you havent gotten any reponses. It just may be that

those who are NOT emailing are having a very hard time at the moment. I can tell

you now, that I am certainly in no position nor do I have time to even be doing

this but feel this needs to be addressed.

So, if you feel the need, keep posting. Surely, you'll connect with someone.

Just try again or at another time.

Peace,

Krystena R.

>

> Date: 2004/11/09 Tue AM 10:29:31 EST

> To: Mito

> Subject: never get a reply,ever

>

>

hi all

i am mad as i never get a reply . ;((((((

Please contact mito-owner with any problems or questions.

[Guest guest]

>

> hi all

> i am mad as i never get a reply . ;((((((

I'm sorry that I have not replied earlier, as I get the daily digest

and mainly just read a few that catch my interest. Also you need to

keep in mind the time differences as you may post the message while

many of us are sleeping

I have created a web site called Kayley's mito angels friends on

which I have pictures of some of the children that have lost their

battle with mito. Each photo has a link to that child's web site if

they have one and some also have links pages.

I would be honored to include your daughter , you will find the

email form to send a photo on the site.

Regards

mom to ^ Kayley^ 03/16/00 - 09/23/00 Leigh's disease

Sinead age 6 bright & healthy

http://myweb.ecomplanet.com/MCMA8011

Kayley's mitoangel friends http://jennymc3.tripod.com/mitoangel.html

" When someone comes into our lives.....and they are too quietly and

quickly gone they leave footprints on our hearts and their memory

stays with us forever. "

[Guest guest]

>

> hi all

> i am mad as i never get a reply . ;((((((

I'm sorry that I have not replied earlier, as I get the daily digest

and mainly just read a few that catch my interest. Also you need to

keep in mind the time differences as you may post the message while

many of us are sleeping

I have created a web site called Kayley's mito angels friends on

which I have pictures of some of the children that have lost their

battle with mito. Each photo has a link to that child's web site if

they have one and some also have links pages.

I would be honored to include your daughter , you will find the

email form to send a photo on the site.

Regards

mom to ^ Kayley^ 03/16/00 - 09/23/00 Leigh's disease

Sinead age 6 bright & healthy

http://myweb.ecomplanet.com/MCMA8011

Kayley's mitoangel friends http://jennymc3.tripod.com/mitoangel.html

" When someone comes into our lives.....and they are too quietly and

quickly gone they leave footprints on our hearts and their memory

stays with us forever. "

[Guest guest]

Hi Ayesha,

I am sorry you feel bad. I know it's not anything personal.

Sometimes I don't have any knowledge that would be helpful to

someone's post, I know that is probably common. Also, there are

other considerations such as time, computers etc. I am having to

check my email at the library until we get ours back, and I only

have an hour to do so. I also don't get to check everyday. I know

others have similar situations. Sometimes there aren't any replies

to posts, but that doesn't mean we're not thinking about you. I

have thought about all of the families on this list, and keep them

in my prayers. Please continue to post, and be patient with it.

This is a caring group, there are just a lot of different

circumstances that arise. Look how many replies you got to this

one ;-) LOL God Bless you, Joni

>

> hi all

> i am mad as i never get a reply . ;((((((

[Guest guest]

I am so glad someone finally said something about this. I have emailed many

times over the past 7 years and during the past maybe 2 years I never get

answers either. And it isn't like I'm asking really difficult questions. After

7 years on this site, I've noticed that this site is very clicky. Of all things

to be clicky, it is disgusting that it happens on this site, since WE ARE ALL

SUFFERING!!!!! Also, your attitude towards this poor woman is reprehensible.

How can you be so rude to someone who is obviously suffering. I am very sure I

will get a nasty email back from you too, but at least I'll get something!!

[Guest guest]

,

Many times I do not reply to the e-mails because the question does not

apply to my situation or I don't have a clue what the person is

talking about.

I have had some questions that have gotten replies and some that have

not. I think some questions are easier than others. Sometimes I try

to think of a different way to say the same thing and sometimes I just

try to get the answer a different way (the doctor or nurse or

therapist, etc.)

Sorry,

Twana

> I have emailed many times over the past 7 years and during the past

maybe 2 years I never get answers either.

>

[Guest guest]

Hi ,

I am sorry you have not felt support, but I just know there are

many varied reasons you may feel this way. I think everyone in this

group is supportive in thought or deed, and never does anyone intend

to intentionally not support someone. I don't see where anyone

posted anything offensive in reply to this original post either. On

the contrary, many people posted to the original post to show

support. There are many places in life where " clicks " exist, I

don't perceive this to be one. I have observed many posts in which

only some others have advice, due to the varied nature of

mitochondrial disorder to begin with. There are also posts that

receive many responses due to the common aspects of mitochondrial

disorder. I have posted things before that have not received any

reply, I just assumed there wasn't much to be said about the subject.

However, if there is a post that reflects an urgent nature or many

times just venting, there is always someone to respond to that

person. Again, if you did not feel support in the past, I am sure

that was not intentional. I am relatively new to the group, and

don't post often, but I always keep everyone struggling with this

disorder in my prayers. Joni

> I am so glad someone finally said something about this. I have

emailed many times over the past 7 years and during the past maybe 2

years I never get answers either. And it isn't like I'm asking

really difficult questions. After 7 years on this site, I've

noticed that this site is very clicky. Of all things to be clicky,

it is disgusting that it happens on this site, since WE ARE ALL

SUFFERING!!!!! Also, your attitude towards this poor woman is

reprehensible. How can you be so rude to someone who is obviously

suffering. I am very sure I will get a nasty email back from you

too, but at least I'll get something!!

>

[Guest guest]

Okay, just chiming in here with my $0.02. On the average, i get somewhere

around 100-125 emails a day. many of them are mito related, but as i am a

working single mom i just can't possibly read through every single post. I

often delete many of the posts, but try and read through as many of the major

thread ideas as i can. So in that regard, i will admit that i sometimes miss a

post that i could reply to. I really do try and post as often as possible but

as we all know, life sometimes can just sweep us up and it's difficult to keep

up with every detail. I have found this site to be a tremendous source of

comfort, information, and care. The families here challenge me to step up and

be an advocate for my children's needs, as well as inspire me to reach out to

other families who are in need. It's my hope that we can all continue to post,

as often as possible, in order to uplift and encourage each other as we are all

struggling to row in the same boat.

ruth

mito mom to Mitch and Lexi, both mito affected and my treasures

[Guest guest]

Dear ,

I guess everyone has different experiences. I do not intend to send you a

nasty e-mail. On the contrary, I am very sorry that you have had this

experience and I feel really bad for you. I am fairly new to this group and

I have never felt it to be 'clicky " . I do think, though, that sometimes we

can relate more to people that struggle with the same form or symptoms as we

do. I never heard of mito until my daughter died, almost 2 years ago. I

became a part of this group via my brother's introduction to me of this

group. I felt all alone and desperate to find people who knew how I felt.

It took me a long time to educate myself on mito, and obviously I really

concentrated on the form my daughter had. This was not because I felt it was

more important, but because my 7 year old suffers from it and she is the

focus in my life right now. Mito is so complex, and the more I learn, the

more confused I am. There are so many parents who have it so much harder

than I as far as as symptoms and daily struggles. I always have compassion

for them, my heart breaks for every single one, regardless of the form.

However, when the info discussed is something I cannot relate to or have any

advice on, I do not respond. Maybe that is because it bothers me when others

try to tell me what to do when they have no clue what I am going through,

and so I try to be respectful of that to others too. True, there are some

people I know more about than others simply because they have so much in

common with me as far as the disease process. I do not consider that

, " clicky " and I am so sorry your experience has been different. You have

every right to your feelings because your experience has been different than

mine. When I joined the group and shared my daughter's website, I felt an

overwhelming sense of love poured out to me, even more so than my own family

at times. I am grateful for the group ( both mitoangels and mito). That is

why I am still part of the group. I also have posted and gotten no responses

at times, but I do forgive and always think maybe no on has any good advice

and that is possible. God knows how unpredictable mito is and there are no

absolutes. I hope as a group we can help others to not feel this way and be

as much support to one another as we can when we can. Please remember that

each on of us has our own " hell " daily and stress is always in our lives,

and there are days that we have nothing left to give, at least that is true

at times for me. There are days when my husband says I am crazy to even

sqeeze out that little bit of energy to get on the computer, but I tell him

it is so much support and I need it. I have found much love, support and

compassion from this group. I hope you do, too. I apologize that you feel

otherwise.

May God bless you,

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Re: Re: never get a reply,ever

I am so glad someone finally said something about this. I have emailed many

times over the past 7 years and during the past maybe 2 years I never get

answers either. And it isn't like I'm asking really difficult questions.

After 7 years on this site, I've noticed that this site is very clicky. Of

all things to be clicky, it is disgusting that it happens on this site,

since WE ARE ALL SUFFERING!!!!! Also, your attitude towards this poor woman

is reprehensible. How can you be so rude to someone who is obviously

suffering. I am very sure I will get a nasty email back from you too, but

at least I'll get something!!

Please contact mito-owner with any problems or questions.

[Guest guest]

I am sorry a few of you feel that your e-mails haven't been returned.

Before I came to this group I was in another group (health related not Mito

related) and I too rarely received any replies. I came to realize that in

my case, I just didn't fit into the group because my child was different

from theirs. They had one time strokes that caused damage and my daughter

kept having issues causing further damage. I think they just didn't relate.

When I came to this group we " fit " and I immediately found these women (and

men) to be very caring. At times I ask things that noone replies to and so

I either resend the message so maybe someone else may see it that

understands the issue or I rename the message to better fit the issue so

those who only read what pertains to them (due to business) will notice it.

If you are frustrated, I am sorry. Keep trying and don't give up. Maybe

you have some questions we can help you with so please keep asking us or

making comments to others and helping them. It is a group of giving and

receiving. I hope you will feel you fit in soon.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: Re: never get a reply,ever

>

> I am so glad someone finally said something about this. I have emailed

> many times over the past 7 years and during the past maybe 2 years I never

> get answers either. And it isn't like I'm asking really difficult

> questions. After 7 years on this site, I've noticed that this site is

> very clicky. Of all things to be clicky, it is disgusting that it happens

> on this site, since WE ARE ALL SUFFERING!!!!! Also, your attitude towards

> this poor woman is reprehensible. How can you be so rude to someone who

> is obviously suffering. I am very sure I will get a nasty email back from

> you too, but at least I'll get something!!

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Darla,

Thanks for taking my email seriously instead of getting defensive like the

webmaster did. We are all suffering or we wouldn't be a member of this

list...but I really appreciate your support to those of us who feel a little on

the outside.

Nicki-Mom of Connor Complex IIIand IV deficiency, MNGIE