Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Raeline, Welcome to the group and fire away questions or rants anytime. All here understand! Hang in there, I wish I could say things will get better, but I am not that foolish to even tell you that. The truth is that no one really knows what to expect with this crazy disease. So any questions fire away as there usually is someone who can give you some advise or even an answer! LOL Welcome again Hugs O. Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Hi and welcome. There is another group called mito oldies on yahoo that you may also want to join. It may help you answer questions in regards to your sister. There are others in this group whose children have MELAS who might be able to answer some of your questions in regards to your niece. Remember to take some time for yourself. It is difficult being a constant caregiver. Geri-Anne and Wyatt, Complex I -- In Mito , " raelinegriffiths " wrote: > I am a new member and am so happy to have found a group for info and > support. I have a37 year old sister that was diagnosed with MELAS > syndrome 8 years ago. I have been caring for her and her children > since that time. My niece who is 10 also has been diagnosed with > the disease. I find myself so isolated and have been suffering from > depression over the recent holiday season. I sometimes wonder how > we can all go on. I would like to e-mail with others in similar > situations. Sincerely, Raeline Griffiths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Hi and welcome. There is another group called mito oldies on yahoo that you may also want to join. It may help you answer questions in regards to your sister. There are others in this group whose children have MELAS who might be able to answer some of your questions in regards to your niece. Remember to take some time for yourself. It is difficult being a constant caregiver. Geri-Anne and Wyatt, Complex I -- In Mito , " raelinegriffiths " wrote: > I am a new member and am so happy to have found a group for info and > support. I have a37 year old sister that was diagnosed with MELAS > syndrome 8 years ago. I have been caring for her and her children > since that time. My niece who is 10 also has been diagnosed with > the disease. I find myself so isolated and have been suffering from > depression over the recent holiday season. I sometimes wonder how > we can all go on. I would like to e-mail with others in similar > situations. Sincerely, Raeline Griffiths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Hi and welcome. There is another group called mito oldies on yahoo that you may also want to join. It may help you answer questions in regards to your sister. There are others in this group whose children have MELAS who might be able to answer some of your questions in regards to your niece. Remember to take some time for yourself. It is difficult being a constant caregiver. Geri-Anne and Wyatt, Complex I -- In Mito , " raelinegriffiths " wrote: > I am a new member and am so happy to have found a group for info and > support. I have a37 year old sister that was diagnosed with MELAS > syndrome 8 years ago. I have been caring for her and her children > since that time. My niece who is 10 also has been diagnosed with > the disease. I find myself so isolated and have been suffering from > depression over the recent holiday season. I sometimes wonder how > we can all go on. I would like to e-mail with others in similar > situations. Sincerely, Raeline Griffiths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Raeline, I'm truly sorry your sister and neice have been diagnosed. It must be hard caring for them and trying to remain positive. I have 2 year old twin daughters who were diagnosed last year. I have struggled in dealing with our diagnosis but, have finally been able to be at peace with it. I try to live each day to it's fullest and enjoy every moment I have with my children. That doesn't mean that I don't have days that I am overcome with emotions and pity that we have to live our lives worrying about so much. I guess my advice to you would be keep your chin up; be strong and love your sister and her children with all that you have. I will pray for you and your family. Kim - Mom to and Lindsey (2) Partial Complex I Mason (4) Healthy Delaney (6) Healthy Husband - Matt I am a new member I am a new member and am so happy to have found a group for info and support. I have a37 year old sister that was diagnosed with MELAS syndrome 8 years ago. I have been caring for her and her children since that time. My niece who is 10 also has been diagnosed with the disease. I find myself so isolated and have been suffering from depression over the recent holiday season. I sometimes wonder how we can all go on. I would like to e-mail with others in similar situations. Sincerely, Raeline GriffithsPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Raeline, I'm truly sorry your sister and neice have been diagnosed. It must be hard caring for them and trying to remain positive. I have 2 year old twin daughters who were diagnosed last year. I have struggled in dealing with our diagnosis but, have finally been able to be at peace with it. I try to live each day to it's fullest and enjoy every moment I have with my children. That doesn't mean that I don't have days that I am overcome with emotions and pity that we have to live our lives worrying about so much. I guess my advice to you would be keep your chin up; be strong and love your sister and her children with all that you have. I will pray for you and your family. Kim - Mom to and Lindsey (2) Partial Complex I Mason (4) Healthy Delaney (6) Healthy Husband - Matt I am a new member I am a new member and am so happy to have found a group for info and support. I have a37 year old sister that was diagnosed with MELAS syndrome 8 years ago. I have been caring for her and her children since that time. My niece who is 10 also has been diagnosed with the disease. I find myself so isolated and have been suffering from depression over the recent holiday season. I sometimes wonder how we can all go on. I would like to e-mail with others in similar situations. Sincerely, Raeline GriffithsPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Raeline: Bless you for what you are doing for your family. What a difficult, horrible thing your family is dealing with. I hope you are getting help for the depression - You have so much to deal with. Don't give up, but I hope somehow you can get some help so you don't have to do it all alone. My boys don't have MELAS, but they do have mito. We all have a lot in common here. Glad you found us. Cindy, mom to Seth and Ben, both mito. I am a new member I am a new member and am so happy to have found a group for info and support. I have a37 year old sister that was diagnosed with MELAS syndrome 8 years ago. I have been caring for her and her children since that time. My niece who is 10 also has been diagnosed with the disease. I find myself so isolated and have been suffering from depression over the recent holiday season. I sometimes wonder how we can all go on. I would like to e-mail with others in similar situations. Sincerely, Raeline Griffiths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Raeline: Bless you for what you are doing for your family. What a difficult, horrible thing your family is dealing with. I hope you are getting help for the depression - You have so much to deal with. Don't give up, but I hope somehow you can get some help so you don't have to do it all alone. My boys don't have MELAS, but they do have mito. We all have a lot in common here. Glad you found us. Cindy, mom to Seth and Ben, both mito. I am a new member I am a new member and am so happy to have found a group for info and support. I have a37 year old sister that was diagnosed with MELAS syndrome 8 years ago. I have been caring for her and her children since that time. My niece who is 10 also has been diagnosed with the disease. I find myself so isolated and have been suffering from depression over the recent holiday season. I sometimes wonder how we can all go on. I would like to e-mail with others in similar situations. Sincerely, Raeline Griffiths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Raeline: Bless you for what you are doing for your family. What a difficult, horrible thing your family is dealing with. I hope you are getting help for the depression - You have so much to deal with. Don't give up, but I hope somehow you can get some help so you don't have to do it all alone. My boys don't have MELAS, but they do have mito. We all have a lot in common here. Glad you found us. Cindy, mom to Seth and Ben, both mito. I am a new member I am a new member and am so happy to have found a group for info and support. I have a37 year old sister that was diagnosed with MELAS syndrome 8 years ago. I have been caring for her and her children since that time. My niece who is 10 also has been diagnosed with the disease. I find myself so isolated and have been suffering from depression over the recent holiday season. I sometimes wonder how we can all go on. I would like to e-mail with others in similar situations. Sincerely, Raeline Griffiths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Raeline I commend you for taking on all you are doing! I hope you have (or find) someone who will give you a break sometimes. This is a great group, just vent or ask questions whenever you are ready! deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comhttp://health.groups.yahoo.com/group/NurturingHeavensKids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Raeline I commend you for taking on all you are doing! I hope you have (or find) someone who will give you a break sometimes. This is a great group, just vent or ask questions whenever you are ready! deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comhttp://health.groups.yahoo.com/group/NurturingHeavensKids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Raeline I commend you for taking on all you are doing! I hope you have (or find) someone who will give you a break sometimes. This is a great group, just vent or ask questions whenever you are ready! deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comhttp://health.groups.yahoo.com/group/NurturingHeavensKids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Raeline: First of all welcome to the group. When you mention you feel isolated is it because you are somewhere where you aren't around a lot of people or because no one understands what you are going through? No matter what the illness a person has it is always difficult to do it on your own. YOu try to remain positive for others around you when inside you are screaming. As some one mention on the list are you getting help for your depression; medicine, talking to some one? We all get depressed during our time with this illness just because you do get burned out caring 24/7 for a person. And I know I find it a little more difficult as my daughter gets older and I'm so unsure of the future. Can you get some one to help you with your family and of course the other question is would your sister accept help from some one other than you? There are many programs out there to guide you and offer you help. Respite care. But by first joining this group is a good step. Ask all the questions you need. There are so many " professionals " in this group it is scarey. Some times a person feels more depression during the holiday season because we are geared to be so upped during this time of the year. It sounds like you need good information and you deserve a break today and it's not from Mc's either. Let us know how we can be of service to you. Write down your feelings and information you need so you can get the help you need and also the help your sister and neice need. Good luck and stay in touch with us. Nerenhausen mom to Leah raelinegriffiths wrote: > I am a new member and am so happy to have found a group for info and > support. I have a37 year old sister that was diagnosed with MELAS > syndrome 8 years ago. I have been caring for her and her children > since that time. My niece who is 10 also has been diagnosed with > the disease. I find myself so isolated and have been suffering from > depression over the recent holiday season. I sometimes wonder how > we can all go on. I would like to e-mail with others in similar > situations. Sincerely, Raeline Griffiths > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 Hi, My name is Ubeyd. I am from Turkey, Ýstanbul. I am 24 and I am diabetic for 11 years. I don't know whether there are a lot of type 1 diabetics in this group but I want to ask you some questions. Should we always care about eating in the same time and in the same amount? Whenever I want to make an unusual thing, even just go around with my friends, I can not regulate my BSL. Is there anyone who knows the formula of it? What are you doing for exceptional days? I really wonder is it a problem for all? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 I would suggest contacting the Maricopa County Department of Health and/or some of the hospitals' Community Outreach departments. Have you found a church yet? Your pastor may be able to point you to community resources. [alldiabeticinternational] I am a new member My name is Cyndy. My 11 yr old daughter was diagnosed with Type 1 Juvenile Diabetes this last November 2003. We just moved to Phoenix Arizona from Riverton Wyoming in March 2004. I would really like to find others in the north Phoenix area with this same affliction for questions, support and friendship. Of course, you don't have to live in Phoenix to offer that, I'm open to any suggestions or comments from anyone who would like to email me: cyn_v4phamilee@.... Bless you all and I wish everyone a wonderful week. Cyndy pancreatitis info http://health.groups.yahoo.com/group/ThePancreatitisPlace/ diabetic recipes http://health.groups.yahoo.com/group/diabetic_recipes/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 This sounds like the sort of thing you need to discuss with your health care team. Do you have Diabetes Educators and Nutritionists/Dieticians in Turkey? [alldiabeticinternational] I am a new member Hi, My name is Ubeyd. I am from Turkey, Ýstanbul. I am 24 and I am diabetic for 11 years. I don't know whether there are a lot of type 1 diabetics in this group but I want to ask you some questions. Should we always care about eating in the same time and in the same amount? Whenever I want to make an unusual thing, even just go around with my friends, I can not regulate my BSL. Is there anyone who knows the formula of it? What are you doing for exceptional days? I really wonder is it a problem for all? pancreatitis info http://health.groups.yahoo.com/group/ThePancreatitisPlace/ diabetic recipes http://health.groups.yahoo.com/group/diabetic_recipes/ Quote Link to comment Share on other sites More sharing options...
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