Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 Dawn, I sure wish I could be of more help with advice, But I did want you to know that I am sorry you are going through this. Just wanted to send hugs and hope you get through this soon and all goes well. Thinking of you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 Dawn, I sure wish I could be of more help with advice, But I did want you to know that I am sorry you are going through this. Just wanted to send hugs and hope you get through this soon and all goes well. Thinking of you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 Dawn, I sure wish I could be of more help with advice, But I did want you to know that I am sorry you are going through this. Just wanted to send hugs and hope you get through this soon and all goes well. Thinking of you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 Dawn, I hear you totally! The words you speak are very true! I have for years battled ER Docs and pediatricians who don't get it. We ended up in court at one point in order to save Kira's life to get her transferred from a hospital considered to be a top hospital in the US but who had doctors so arrogant they would not admit that they had made a mistake and darn near cost her her life. But then again I have had the Mito specialists not back me at needed times as well because they are afraid to risk their careers as well. I am currently in a situation where I NEED help and I can't get it because everyone is to cotton pickin scared of being sewed or what ever. In the long run my child pays the price. And then ultimately my health. I am sick to death of Mito for sure! But most of all Mito ignorance!!!!!!! On the part of the Doctors so called specialists, ER Doctors, Family, friends!!!!!!! It has to stop, I just personally wish I knew how. I have written the Oprah Show the Maury Povich show, Local news casters ect. I have even tried to see the governor of California to see if I can't get some state help since I am after all a working Californian with absolutely no and I mean NO luck at all at getting any governmental aide and I have 3 Mito kidos. I am currently dealing with three very ill Mito kids, and a stupid nurse who was sent out to evaluate the situation who said I just needed to buck up that she raised three children and that mothers of today are just spoiled brats! NO kidding!!!!!! Mind you her children were not ill children. Kira was lifeless in her bed, sound asleep with a fever of 102 and my husband had just brought Krisalynn home early from school because she was in a Full blown Migraine. But I needed to buck up!!!!! How the heck she thinks I can work and be at home at the same time is beyond me!!!!!! I can't take care of my three Mito kids if I don't work so that I can pay for 700 a month in Co Q 10 and then another 400 to 500 amonth in medicine deductibles. Not to mention all the medical bills and visit deductables. If I sit on my backside and don't work I would get some governmental help but not enough to keep them alive and would loose their medical insurance. It is all so Insane!!!!!!! Sorry I didn't mean to make your situation my complain session. I guess I want you to know you are not alone in the fight. That there are many of us doing the same thing you are doing. You MUST remember it is about the kids and the kids only. You are right you cannot do them much good sitting in jail, and trust me I fully understand what you are saying here. I wish UMDF was a better source of help here. I have tried to get them to see they need to have a family support section to them. Like MDA has, although it is not much it is there! And I have gotten more support personally for myself and the kids from MDA in the 5 months I have been involved with them then from UMDF ever over 9 years of involvement. You have to protect them the best you can, but also try and keep in perspective that you can only do so much. If you tick off your doctor you are sunk as well. It is a hard place to be in for sure! I am thinking and praying for you and the kids. Hugs O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 --- Dawn, I have no words of advice to give you...sorry. My heart goes out to you. You are a good mom. Looking into your childs best interest. You are in a very frustrating situation... your plate is full. I will pray for your strength... for jeffs mind to open...for a Dr to step forward...for the leagal system to have an open mind. Your family and you are in my thoughts and prayer!!!! Best Wishes, dawn a In , " thefourofus03 " wrote: > As many of you know, I have gone through a horrible divorce this > past yr. 's doctor stepped up and protected her from the > medical incompitence of her father and he can only visit her in my > home. Drew is 13 and has chosen to not go with Jeff. In short, Jeff > has not chosen to learn anything about mito in th past three yrs we > have dealt with it because of . He lives in denial. Molly > just began to go for overnights with him in the spring (because of > her age) and that is when she began to present. She has had constant > exhaustion, low grade temps, dehydration, and heat exhaustion upon > returning from his home. When she was officially diagnosed this week > he told me " I am optomistic she will live a normal life and grow > out of it " . Do you see what I mean? Her doctor(pediatrician who > knows little of mito) told me that he doesn't want to get dragged > into court (I think Jeff has threatened him). I am frightened. Do > you know how hard it is for us to expalin mito to ER docs? try > explaining it to a judge or court worker or laywer. No one cares. > One mistake and she can die. I am trying to get help from her mito > doc but we have seen him once, so I can't imagine he will want o get > involved. No one wants to protect her. I will go to jail- but how > will that help them? any ideas would really help. I cannot believe > it has really come to this. It really is that bad, and the court > system is really that stupid. > > Any help would be appreciated. > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2004 Report Share Posted September 26, 2004 Dawn The only thing I can think of is that it is extremely important for you to get copies of all ER visits, labs, doctor's reports and so on. If things end up in court, you want copies of all this. I hope that it never comes to this. It is so hard to deal with an ex. like this, when it takes every bit of energy to be a single mom of a sick child. My ex. never took me to court, but he also had his head stuck in the sand. One of my son's broke his arm while with him. He just brought him home early, as it was up to me to take care of, since he didn't think there was anything wrong with it. I certainly feel for you and will keep you in my thoughts. Big hungs, laurie > > Reply-To: > Date: Sun, 26 Sep 2004 15:01:34 -0000 > To: > Subject: I need help > > As many of you know, I have gone through a horrible divorce this > past yr. 's doctor stepped up and protected her from the > medical incompitence of her father and he can only visit her in my > home. Drew is 13 and has chosen to not go with Jeff. In short, Jeff > has not chosen to learn anything about mito in th past three yrs we > have dealt with it because of . He lives in denial. Molly > just began to go for overnights with him in the spring (because of > her age) and that is when she began to present. She has had constant > exhaustion, low grade temps, dehydration, and heat exhaustion upon > returning from his home. When she was officially diagnosed this week > he told me " I am optomistic she will live a normal life and grow > out of it " . Do you see what I mean? Her doctor(pediatrician who > knows little of mito) told me that he doesn't want to get dragged > into court (I think Jeff has threatened him). I am frightened. Do > you know how hard it is for us to expalin mito to ER docs? try > explaining it to a judge or court worker or laywer. No one cares. > One mistake and she can die. I am trying to get help from her mito > doc but we have seen him once, so I can't imagine he will want o get > involved. No one wants to protect her. I will go to jail- but how > will that help them? any ideas would really help. I cannot believe > it has really come to this. It really is that bad, and the court > system is really that stupid. > > Any help would be appreciated. > Dawn > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 > When she was officially diagnosed this week > he told me " I am optomistic she will live a normal life and grow > out of it " . Perhaps you could convince him, based on that comment, that first she needs to get through this period of her life. If it is a temporary condition like he thinks, then everyone needs to work hard to help her through it. I don't consider my condition permanent (maybe it is denial on my part), but the important thing for me is to get through each day and minimize damage for the future. If he realizes that each day he doesn't provide basic needs for your daughter, he could be " delaying her cure " , maybe he might at least treat her as the doctors suggest. Unfortunately it sounds like your ex may have some mental illness issues... Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2005 Report Share Posted July 14, 2005 Well I went back to bed and slept all day, woke up and it was gone, have not had the pain since. the back feels fine, and the walking is good, is this weird or what? Do some of you ever have anything like this, I know a lot of you spend most of your time in bed, pain, or unable to walk, weak?? I do see my doc soon, and will tell him about this, but now that it has passed, they will say, well it's gone............. And I never go to the er, but I know never say never, I have been very blessed, when I need the er I call my doc and he just meets me, like another area of the hosp, then does o.p orders, which saves me a great deal of money. Thanks for responding to my email!! If it happens again, I will call the doc. Marla Hi Marla!, How has your back been?!?!? ... Hopefully, it is okay still. For me, yes, absolutely, what you describe is what I feel from sarc ... it feels like you were hit in the center of your lower spine with a baseball bat ... hurts so badly, so weak, and need to hold on or you'll fall (which I've done often ... and what lead me to my cane, wheelchair if we have to go somewhere like the mall, etc., and walker with a seat ... walking is the best exercise for your back ... if you are up to walking, absolutely do it ... I force myself no matter how tired I am ... if my back can handle it, I do it...but I don't do it without my walker with the seat ... I found myself one too many times walking okay, then without warning, boom ... I need to sit ... which is where the walker with seat comes into use) Marla, watch your back ... really, if you injure it from just an "ordinary" twist or turn, I fear you may have far worse problems in the long run ... this is how it started with me and what lead to my disability, need for all the meds I'm on now, including methadone which has been a life saver. Take care of that back, dear, Joan "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
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