Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 > > 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. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 > > 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. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 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 . ;(((((( Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 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!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 , 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 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!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 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 Quote Link to comment Share on other sites More sharing options...
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