Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 Caroline, Woke up to the news this morning and was so upset, was not sure what had happened. Praying hard for you all and that these evil terrorists will be found and taken care of. The constant stress of this is not good for any of us. You are all in our prayers!! Lynn -- Thanks Thanks to all who have been so welcoming to me this week. It's good to be back amongst friends. Please spare a thought for my fellow Londoners who are reliving the nightmare we first experienced only 2 weeks ago. I know our many friends around the world will be standing with us against this evil. Love C2 Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 Marilyn, That is so so awesome to go see them. Their show is just absolutely fabulous from what I have heard. They had a show Orlando at the Disney resort, but I was unable to get tickets to go. Hopefully my next trip I can. Happy Birthday with many more returns, and pain free day ahead Tracilyn Thanks Just wanted to thank those who wished me a happy birthday. As it is past midnight, it is officially my birthday (Aug. 1st). Not sure what is up for this day but hubby has a surprise for me on Tuesday and is taking me to see Cirque de Soleil. So I'm excited about that. HAPPY BIRTHDAY TO ALL THOSE CELEBRATING DURING THE SUMMER MONTHS! Marilyn Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html The materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Thank you so much for that post . That is a wonderful way that you put it about the mirror and others being able to see us diffeently. It is the same for me too. In my head and in the mirror sometimes I see myself as really beutiful and nice and understanding and other days I see myself as ugly and worthless and stupid. Some days, when I am thinking that I am right or I am just being myself, maybe my husband who can see me 3D, says " Honey you are not being very nice right now, why don't you take a minute and take a breather, I'll watch the kids for a minute so you can calm down " Then I realize that I must not look how I see myself. But other days, when I see myself as ugly and worthless and stupid, he can also remind me of the talents that I do have and the pretty qaulities that I do have and the achievments I have made and let me remember not to compare myself to others and not worry about living up to their expectations. And sometimes when I see myself in a photo, (from the back or something) I can have one more look into how others see me, and it's not always pretty. But I try and keep working on myself and I am thankful, when people give be a kind honest critique. It just helps when they try to be nice about it, instead of lashing out. So thank you for doing that. I really did like your annalogy. I will keep trying harder to be a better person and to be more understanding of everyone. Thanks, Esther --- wrote: > If I may offer some solace. Kassi, I understand > your pain all too well. It > hurts and we seem to continue getting hurt as autism > is seemingly ripped > apart and dissected as if it were a cancerous > growth. But I have learned > that in every good there is an opposite bad, and I > have to decide upon which > I am going to focus. I have to focus on the good > and put aside the bad. > The bad eventually fizzles out. Remember when > America first learned of > AIDS? All the negative press and presumptions! > They were calling it the > " Gay disease! " The gay population was devastated > and had their lifestyles > picked apart by America as a whole. But one little > boy, I believe his name > was White, showed America that their fears > developed into prejudice by > calling AIDS a " Gay disease " and gave his life > for that. So, autism is > not a terminal disease, but the point I am making is > that the press and the > medical society does not always see what is right. > > > > There are only two ways which I can see myself > daily, my mirror image and my > shadow. But others around me can see me three ways, > my mirror image, my > shadow or looking directly upon me. Other people > can see us from behind, > from our side or upside down and because of that it > takes other people to > let us know our tag is sticking out of our shirt or > we have something stuck > to our pants. We see our autism much the same way. > We see our mirror image > and our shadow, but we cannot see ourselves the way > others see us from their > NT point of view. This has a good and a bad. The > bad is that many can be > prejudice. Yet the good is that NT's can help us to > see their world. If we > show NT's our mirror images and our shadows they can > compare it to what they > see and help translate for us. (by the way, I have > always used the mirror > image as the things I like about myself, and my > shadow as the things I do > not like). > > > > There will be times when the NT world misinterprets. > I mean, for goodness > sakes, many NT's have to read books just to learn to > talk to one another > much less understand autistics! LOL. So anyway, I > try and remember that > there is always good out of adversity. Otherwise, > why fight at all? > Esther, I do appreciate all you do and all you > sacrifice for people like me. > > > > I hope this brings peace to you. > > > > Nadine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 I started treatment last night. Posted by: " B. " bestofmarys57@... bestofmarys57 Fri Nov 14, 2008 4:23 pm (PST) Rita ~~ I struggled with the same issue when deciding to do tx. I wasn't sick at all -- zero active symptoms for HCV. I realized though that a short term (in relation to the rest of my life) of being sick from tx would be worth it to try and erradicate the virus. I also realized that even though I might not have any symptoms from the virus actively, it was still doing damage to my liver which could potentially effect me very seriously in the future. So far almost 6 months post tx I am still undetectable. So all in all, feeling bad for 6 months was beneficial to my overall future health. Be sure to keep in touch with concerns and updates -- that's what this group is all about. Blessings and best of luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2009 Report Share Posted November 2, 2009 Just FYI: I worked with Dr Mark Stengler in San Diego CA via phone and ordered tests. We did not have any naturopaths in TN. We were very pleased with his services. Helped my son quite a bit. Subject: Thanks To: Date: Monday, November 2, 2009, 1:28 PM Hi , Thanks for the information about homeopathic treatments.. . I understand it much better now. I searched the AANMC and found that my state does not recognize the Naturopathic doctors as licensed practitioners so it probably would be out-of-pocket. But the psychiatrist my daughter sees now is out-of-network so we're already used to having to pay a lot. After reading your post, I remembered my friend, , who I only see a couple of times a year... she has had homeopathic treatments for various physical problems and has been very satisfied with the results. I'll ask her if she knows anyone in the area and I'll also do some more researching on my own. My daughter's psych. has now referred us to an associate of his who is a neuro-pharmacology expert at a hospital that's about an hour away from us. If that doesn't work out, we will consider the homeopathic route. Thanks again for all the good information. N. > > Regarding your questions, I can share with you what I have found through internet research and my own experience: > > You will find there is not much support for Classical Homeopathy which is why I hoped to find some feedback from this group. Science, as we understand it today, does not much support its use or effectiveness - studies showing results not better than placebo etc.. Hom. deals with a theory that supports the use of highly diluted concentrations of substances (remedies ), usually derived from plant, animal or mineral usually in the form of small white pellets that are prescribed based on the assessement of the whole person - ie physical, emotional, and intellectual symptoms.. Therefore you will have different remedies despite the fact that you are treating the same disorder - in our case, OCD or similar. The remedies our daughter was prescribed were 1st, Sulphur and then, when that wasn't getting the desired results (mood much better but not getting at the rituals), she was put on Ignatia. The goal (and I know this sounds too good to be > true) is to evenutally get the body to heal itself from what is causing the OCD symptoms. Honestly, the more I have learned, the more I find it VERY counter intuitive. However, having a br in law that is a Naturopathic Doc, we were encouraged to look further into it. In regards to finding a " good Homeopathic practitioner, we learned that there are only a handful of accreditted colleges for Naturopathic Doctors (4 yr degree). I would recommend finding someone that has graduated from one of those programs (search AANMC) and see if they have significant experience in treating OCD or related disorders with Homeopathy, or can recommend someone that specializes in it. The person that was recommended to us treats alot of bi-polar, anxiety and depression and other Behavioral Health issues which was another main reason we decided to go ahead with it. I can share more about that if you like. We do all over the phone - 1st " visit " is > lengthy 1-2 hours and the rest are pretty quick at 5-15 minutes. It typically is not covered by insurance (ouch!) unless you are in a state that recognizes them as licensed practitioners (I think only about 15 states) Our visits are equal to or less $$ than what a pdoc cost and the remedies are only $10-12 each. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2009 Report Share Posted November 3, 2009 I am so far ahead of Tx now. I tried relapsed and cannot do it again until after my transplant. Drinking water eating right does nothing. Been there done that and I still get sicker. Its been so long since I felt healthy I forgot what its like Today I enjoy life, try to eat healthy but don't stress about it if I don't. I am trying to make plans for pre and post transplant. Made my death arrangements long ago. Sad to say but the only one I will really miss at this point is my Service Dog. I am moving to ville in November and have to start all over again. I need to build a support system and hopefully make new friends. I hate ville. So busy so fast paced but you do what you gotta do For me thats being happy period. Dragon Fighter > > > Subject: Hey Deb/Questions on transplant and MELD score > To: HepatitisCSupportGroupForDummies > Date: Tuesday, November 3, 2009, 5:59 AM > > > > > > > > > > > > > Can I get on the various organ collector lists? There seems to be one in every state and 3 in Florida. > > > > My Mayo Doctor tells me I am a MELD 8 but a MELD Sodium 18???? Ever hear of this? It makes no difference that my kidneys are going down the tubes as far as UNOS and Mayo are concerned. I am still not even on the transplant list. > > > > Last question, I see most people are transplanted when they are in the MELD 20ies. I need a HepC free, child's liver, A+ blood type liver. My pool of available organs will be small so I am expecting to probably have to wait longer. My question is how long will I be able to live by myself and care for myself ie grocery shopping, bathing, cooking and cleaning my very small condo? At what MELD Score do you need full time help or even part time? > > > > Today my mind is shot to hell from TX and ammonia build up. I have the shakes, sick to my stomach allot, very very weak and sometimes almost comatose when my electrolytes crash. Sleeping 8 hours is a thing of the past and hopefully the future I will be moving to ville November 23 to be closer to Mayo. This way I only have to drive 8 miles to the hospital to see all the various Doctors and to get their required testing. It will be me and my Service Dog Athena (Doggie Genius)a Doberman Pinscher. > > > > I also have a question on these dang diuretics. My blood work is so bad BUN off the chart, Glom Filtration very low, creatinine which is holding my MELD score down is just 2 points away from being over the normal range. I was wondering if there was a chart that says when kidney damage is coming or present? I looked everywhere for this stuff and could not find it. > > > > My biggest concern is at what MELD Score will I be no longer able to feed, clothe and bathe myself > > > > > > Dragon Fighter Extrodinaire > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 , One of the first things you need to have to get onto a transplant list is a Care Provider. There has to be someone who will be there to ensure you can get to and from appointments, pick up your meds, take you home after the transplant. Without a care provider as part of your transplant team they may not consider your case. > > > > From: <gremlin291989@> > > Subject: Hey Deb/Questions on transplant and MELD score > > To: HepatitisCSupportGroupForDummies > > Date: Tuesday, November 3, 2009, 5:59 AM > > > > > > > > > > > > > > > > > > > > > > > > > > Can I get on the various organ collector lists? There seems to be one in every state and 3 in Florida. > > > > > > > > My Mayo Doctor tells me I am a MELD 8 but a MELD Sodium 18???? Ever hear of this? It makes no difference that my kidneys are going down the tubes as far as UNOS and Mayo are concerned. I am still not even on the transplant list. > > > > > > > > Last question, I see most people are transplanted when they are in the MELD 20ies. I need a HepC free, child's liver, A+ blood type liver. My pool of available organs will be small so I am expecting to probably have to wait longer. My question is how long will I be able to live by myself and care for myself ie grocery shopping, bathing, cooking and cleaning my very small condo? At what MELD Score do you need full time help or even part time? > > > > > > > > Today my mind is shot to hell from TX and ammonia build up. I have the shakes, sick to my stomach allot, very very weak and sometimes almost comatose when my electrolytes crash. Sleeping 8 hours is a thing of the past and hopefully the future I will be moving to ville November 23 to be closer to Mayo. This way I only have to drive 8 miles to the hospital to see all the various Doctors and to get their required testing. It will be me and my Service Dog Athena (Doggie Genius)a Doberman Pinscher. > > > > > > > > I also have a question on these dang diuretics. My blood work is so bad BUN off the chart, Glom Filtration very low, creatinine which is holding my MELD score down is just 2 points away from being over the normal range. I was wondering if there was a chart that says when kidney damage is coming or present? I looked everywhere for this stuff and could not find it. > > > > > > > > My biggest concern is at what MELD Score will I be no longer able to feed, clothe and bathe myself > > > > > > > > > > > > Dragon Fighter Extrodinaire > > > Quote Link to comment Share on other sites More sharing options...
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