Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Alice, How are you doing? Are you feeling any better? Any talk of trying the mapping again? Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 I'm doing somewhat better but still not doing well. I've added oxygenated water and Creatine to my daily intake as I just had to do something. I had pulse ox testing overnight that was low but have more pulmonary testing on 3/19 and an appt with the pulmo on 6/4. This has been a painstakingly slow process. The overnight pulse ox testing was on 86 every time I woke up and believe me that was often. I am waiting to hear about the reschedule for mapping either on 6/17, 28 or 29. I hope to be on oxygen then if it is proven that I need it as my doctor believes that this could be a major part of the inability of the CI to be doing it's job. Thanks for asking. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Dear Alice, My heart is crying for you and for myself. I sympathize with your need to avoid burdening already struggling children and family members as you confront your own health issues. I have seen myself, my family, and my future in you. Mito is so cruel, so unrelenting. It was to Mitoldies that I turned when I first was diagnosed with MELAS. It was here I found knowledge and was directed to additional sites for information making me an advocate for myself and my family. I was no longer helpless. Just when I felt the walls crashing in on me, you and others inspired me, consoled me, and reminded me of the normal grief we each face with the progression of this disease. You have taught me to stand tall in spite of the onslaught of this disease. Now you are facing another crisis with reason and dignity. I can only shed tears for you and all of us. This is a personal journey each of must face, but not alone, thanks to your example and all the others in this group. While each of us are making our contributions to the expanding scientific knowledge concerning mitochondrial diseases, we are also supporting each other and expanding our personal knowledge on how to handle the many nonscientific aspects of these diseases. Someday there may be a booklet discussing the emotional, physical, financial, insurance, quest for appropriate care, and family issues with recommended pathways and available resources for dealing with them to guide us through this maze of mito life. Until then, I can only extend my hand to all of you and weep. Thank you Alice for your example to all of us. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Firat off a that was a beautiful letter and i second your feelings. Alice I am so sorry to hear all that you are going through. You have given to so many here and mean the world to all of us, Please remember that we are all here for you for supposrt and love. I wish there was more I could do for you, you brought me here and supported me through years of fighting for a diagnosis. I wish I could do more for you. I think of you often and always pray that you will be strong and keep your chin up. That you will be alright and always remember how much you mean to all of us. with love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 a That was beautifully said and is something that all of us might to one another, but you said it in a way that touched my heart. Thanks! laurie > From: pattengale@... > Reply-To: > Date: Mon, 31 May 2004 11:44:03 EDT > To: > Subject: Re: Alice > > Dear Alice, > > My heart is crying for you and for myself. I sympathize with your need to > avoid burdening already struggling children and family members as you confront > your own health issues. I have seen myself, my family, and my future in you. > Mito is so cruel, so unrelenting. > > It was to Mitoldies that I turned when I first was diagnosed with MELAS. It > was here I found knowledge and was directed to additional sites for > information making me an advocate for myself and my family. I was no longer > helpless. > Just when I felt the walls crashing in on me, you and others inspired me, > consoled me, and reminded me of the normal grief we each face with the > progression > of this disease. > > You have taught me to stand tall in spite of the onslaught of this disease. > Now you are facing another crisis with reason and dignity. I can only shed > tears for you and all of us. This is a personal journey each of must face, > but > not alone, thanks to your example and all the others in this group. > > While each of us are making our contributions to the expanding scientific > knowledge concerning mitochondrial diseases, we are also supporting each other > and expanding our personal knowledge on how to handle the many nonscientific > aspects of these diseases. Someday there may be a booklet discussing the > emotional, physical, financial, insurance, quest for appropriate care, and > family > issues with recommended pathways and available resources for dealing with them > to > guide us through this maze of mito life. > > Until then, I can only extend my hand to all of you and weep. Thank you > Alice for your example to all of us. > > a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 I cannot tell you how much this beautiful message touched my heart. I am not giving up the fight.. but instead trying to fight back but prepare myself for the next step. I may rebound or I may not. It's not something that can be predicted. At the moment, all I can do is take one day at a time and each of you here give me the strength to do that. Thank you! Alice Quote Link to comment Share on other sites More sharing options...
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