Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Ken wrote: >I have tried to get this family " connected " from day one. They did make it to the Del Val support group meeting too at my direction. Currently due to family issues they don't have Net access, though I did offer some public library suggestions. They have had the links to my links page, onelist.com, etc, but still haven't gone there yet. I also suggested that the list is great but that they may feel intimidated about truly voicing their opinions about care rec'd because I'm on the list. I tried to re-assure them that the list is for them to vent/voice/ whatever and to not worry about others' opinions (mine included). Dear Ken; You have already gone beyond what most *good* doctors would have done! This family is incredibly lucky to have a doctor with intimate experience of living with " mitochondriacy " (my toe kon dry u see - n. the state of having a mitochondrial disorder -- this is my new creation to add to " The Mitochondrial Dictionary " !) It is sure to be frustrating to any good and caring doctor to have patients who don't follow good, caring, constructive advice! However, Ken, the chances are good that this family will trudge its way through the mires of denial, despair, fear, anger, resentment, guilt AND all the other emotions that come crashing upon them like waves in an angry, turbulent, hurricane-driven ocean. Chances are that they will not drown, but will bob like flotsam until the rough weather calms. All of we mitochondriac families and patients have been intimately familiar with the struggle just to keep afloat that happens when we first feel that there is a problem. You were there too! I am sure that part of the problem is that you are identifying personally with their pain! Good luck Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 1999 Report Share Posted April 25, 1999 Ken, You are giving this family good advice. Be assured I think the same. But it's their choice what to do with the info you provide. Take it or leave it or stay in anger or denial. You are advicing them the best you can. But, I have learned, and believe, the parents have to make the decisions, whether you Or I disagree. That is parents rights. Look, I want parents to join together in the fight with this school district. 8 out of 14 do. Us 8 end up helping the rest. Well, keep trying... your heart is in the right place. Kathy ---------- > > To: mitoonelist > Subject: Ken's frustration > Date: Thursday, April 22, 1999 11:33 AM > > > > Ken wrote: > >I have tried to get this family " connected " from day one. They did make > it to the Del Val support group meeting too at my direction. Currently > due to family issues they don't have Net access, though I did offer some > public library suggestions. They have had the links to my links page, > onelist.com, etc, but still haven't gone there yet. I also suggested > that > the list is great but that they may feel intimidated about truly voicing > their opinions about care rec'd because I'm on the list. I tried to > re-assure them that the list is for them to vent/voice/ whatever and to > not worry about others' opinions (mine included). > > > Dear Ken; > > You have already gone beyond what most *good* doctors would have done! > This family is incredibly lucky to have a doctor with intimate > experience of living with " mitochondriacy " (my toe kon dry u see - n. > the state of having a mitochondrial disorder -- this is my new creation > to add to " The Mitochondrial Dictionary " !) > > It is sure to be frustrating to any good and caring doctor to have > patients who don't follow good, caring, constructive advice! > > However, Ken, the chances are good that this family will trudge its way > through the mires of denial, despair, fear, anger, resentment, guilt AND > all the other emotions that come crashing upon them like waves in an > angry, turbulent, hurricane-driven ocean. Chances are that they will > not drown, but will bob like flotsam until the rough weather calms. All > of we mitochondriac families and patients have been intimately familiar > with the struggle just to keep afloat that happens when we first feel > that there is a problem. You were there too! I am sure that part of > the problem is that you are identifying personally with their pain! > > Good luck > > Jean > > ------------------------------------------------------------------------ > Tired of empty chat rooms and out of date bulletin boards? > http://www.ONElist.com > ONElist: Making the Internet Intimate > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 1999 Report Share Posted April 25, 1999 Ken, You are giving this family good advice. Be assured I think the same. But it's their choice what to do with the info you provide. Take it or leave it or stay in anger or denial. You are advicing them the best you can. But, I have learned, and believe, the parents have to make the decisions, whether you Or I disagree. That is parents rights. Look, I want parents to join together in the fight with this school district. 8 out of 14 do. Us 8 end up helping the rest. Well, keep trying... your heart is in the right place. Kathy ---------- > > To: mitoonelist > Subject: Ken's frustration > Date: Thursday, April 22, 1999 11:33 AM > > > > Ken wrote: > >I have tried to get this family " connected " from day one. They did make > it to the Del Val support group meeting too at my direction. Currently > due to family issues they don't have Net access, though I did offer some > public library suggestions. They have had the links to my links page, > onelist.com, etc, but still haven't gone there yet. I also suggested > that > the list is great but that they may feel intimidated about truly voicing > their opinions about care rec'd because I'm on the list. I tried to > re-assure them that the list is for them to vent/voice/ whatever and to > not worry about others' opinions (mine included). > > > Dear Ken; > > You have already gone beyond what most *good* doctors would have done! > This family is incredibly lucky to have a doctor with intimate > experience of living with " mitochondriacy " (my toe kon dry u see - n. > the state of having a mitochondrial disorder -- this is my new creation > to add to " The Mitochondrial Dictionary " !) > > It is sure to be frustrating to any good and caring doctor to have > patients who don't follow good, caring, constructive advice! > > However, Ken, the chances are good that this family will trudge its way > through the mires of denial, despair, fear, anger, resentment, guilt AND > all the other emotions that come crashing upon them like waves in an > angry, turbulent, hurricane-driven ocean. Chances are that they will > not drown, but will bob like flotsam until the rough weather calms. All > of we mitochondriac families and patients have been intimately familiar > with the struggle just to keep afloat that happens when we first feel > that there is a problem. You were there too! I am sure that part of > the problem is that you are identifying personally with their pain! > > Good luck > > Jean > > ------------------------------------------------------------------------ > Tired of empty chat rooms and out of date bulletin boards? > http://www.ONElist.com > ONElist: Making the Internet Intimate > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
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