Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 HI Jackie, How was the movie?! This is wonderful news, I am happy for all of you. I hope you'll be writing from the OC Institute some day soon. Take care, Lesli (SF Bay) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Thanks , Thanks for your kind thoughts. It really is hard to live so far from family at times like these. And 's mother was the closest in distance to us - only 375 miles. I miss having someone to share with who knows all the stories from when we were kids. Some day I hope to live closer to my family. Take care, Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Dear Gail, Thank you for your letter. seems to be doing well with this program. And people have been saying the nicest things to him. I do hope he Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 - sorry about that. I must have hit the send button inadverdently. As I was saying.- I hope understands how much people really appeciate what he has done to help with the understanding and acceptance of people with OCD. He's a great kid - and I'm so proud of him! Hope you're feeling really better. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 I truly thank you for your kind words. I can do pretty well when I am at work or doing errands, but when I got home tonight there was a package at the door. A Christmas present ordered for me at Christmastime. It's almost more than I can stand. When he is not letting the OCD take over, he is so loving and thoughtful. But when OCD has the upper hand, he is manipulative, controlling, demanding. I am praying constantly that he be all right and that he can eventually accept the help that is there for him. But I do believe he is tough and maybe, as Dr. Jenike said, he will be angry enough at everyone to get better just to show us all. Thanks again. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 Dear Gail, Thanks so much for the encouraging words. I feel so supported by everyone in the group and that makes things easier. I had give the number of the mental health people in Boston who can help him get whatever assistance he needs to stay off the street there. And I have contingency plans just in case he gets back to Indiana - a local shelter and a case worker who can help him live independantly as well as get treatment. So whatever he decides to do, he will not be coming back into the house. Since he doesn't like following anyone else's rules anyway, he shouldn't mind this too much. And the arrangement I have worked out will enable him to stay with the local psychiatrist he has been talking to for over a year. Thnaks again, Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 HI Jackie: Please know that our family here is all rooting for you and for . What you are going through it very, very tough. Celebrate the Xmas gift and know that when recovers there will be many more acts of loving thoughtfulness just like that one. Dr. Jenike is very wise about what it takes for someone with OCD to recover. OUr kids have tremendous strength from battling OCD day by day and underneath the fear they have great determination. ALthough it must feel impossible to hang tough for you right now Jackie, I know you have your formidable acting skills on your side helping you pretend to that you are convinced he can take the big risk ahead of him to get well again. Take care, aloha, Kathy (h) kathyh@... At 11:16 PM 03/02/2001 EST, you wrote: > I truly thank you for your kind words. I can do pretty well when I am at >work or doing errands, but when I got home tonight there was a package at the >door. A Christmas present ordered for me at Christmastime. It's >almost more than I can stand. When he is not letting the OCD take over, he >is so loving and thoughtful. But when OCD has the upper hand, he is >manipulative, controlling, demanding. I am praying constantly that he be all >right and that he can eventually accept the help that is there for him. But >I do believe he is tough and maybe, as Dr. Jenike said, he will be angry >enough at everyone to get better just to show us all. Thanks again. > Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 Jackie, This sounds like progress for . Encouraging independence is so hard but so vital. Is he continuing his studies? I have been thinking about a lot lately as I have been toying with the extravagant but tempting idea of returning to university to do graduate work in the next few years. I realize there are not an astounding number of opportunities for philosophers but at least one has less competetion than with, say, an MBA. :-) More than anything though, my own and my son's experiences with mental health problems has really forced me to understand the brain as an organ of the body (something many people are unwilling to do) and makes me wish I could contribute in my own way to lessening the stigma that surrounds mental illness. Another thought I have had recently that probably applies to , is that I can see now how very seductive mental rituals, visions, even depression , can be for someone who is afraid to face life. For so many years I literally lived in a blur but in my case,until I was very ill, I was able to hide the symptoms from those around me. I was afraid to be well because it meant facing some things that really frightened me, but now that I am well stabilized, moving forward and able to truly *be* in the moment it is amazing. I hope that may someday realize that feeling for himself... ph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Dear ph, Thanks for your encouraging words. I know philosophy means a lot to . And he is apparently very good at it. His professor will put his name on her article if he helps her. That would mean he has been published and should be helpful for his future in the field. I appreciate your sharing of your experiences. It means a lot coming from someone who has experienced such problems first hand. Thanks again. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2001 Report Share Posted December 7, 2001 Jackie, I'm so sorry to hear about Tara. I know this must be very hard for your family. How is handling it? I've said a prayer for you and your family and for Tara's family during this time of grief. Also, I wanted to tell you congratulations on earning your Associate's degree. Your age should never stop you from going after something you want and I'm so proud of you for doing that. I know that now is a terrible time, but be sure to celebrate this when you feel you can. You should be very proud of yourself. Good luck with your studies starting in January! My thoughts and prayers will be with you and Tara's family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2001 Report Share Posted December 7, 2001 Jackie, I'm so sorry to hear about Tara. I know this must be very hard for your family. How is handling it? I've said a prayer for you and your family and for Tara's family during this time of grief. Also, I wanted to tell you congratulations on earning your Associate's degree. Your age should never stop you from going after something you want and I'm so proud of you for doing that. I know that now is a terrible time, but be sure to celebrate this when you feel you can. You should be very proud of yourself. Good luck with your studies starting in January! My thoughts and prayers will be with you and Tara's family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Jackie- Yes I have heard of Protein C Defeciency that is a popular one. He was diagnosed at a young age which is great. I never wore any support stockings. I am only on one blood thinner. I get my blood drawn/checked for the level once a month. Twice a month if not in normal range. I am young, 36 but I am already thinking about menapause. I know its a ways off yet but since I can not ever take hormones again I am concerned because I have a mood disorder and I already have double trouble with the PMS hormones messing with me and exacerbating my deprssion and anxiety and anger too. Do you have any of these emotions to deal with? Wow your MS does sound prettys bad but alteast you are still walking if it is with assistance and are able to do some cooking too. Its great your husband is so suportive and helps you out so much. My soon to be X used to cut my toenails for me because I was obese from the medications I was taking. He also did most of our cooking. He resented this though and was not emotionally supportive but verbally abusive instead. I am not so sure you would love living in Miami, Florida now. A lot of people from there have moved to central Florida to get away from crime,gangs,etc. I have been thru Miami but never spent any quality time there. What did you like about it? The plush green where you live sounds wonderful to me. Believe In Yourself And You Will Go Far In Life SultryRose's Signatures Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 I think I had it since birth and Im 30 yrs old. I have no other risk factors myself, no drugs or drinking alcohol no blood transfusions etc. I was a csection birth also, and she had bleeding complications etc. My mother on the other hand an liver transplant 10 yrs ago because of drinking, drugs and Hep C. I guess she didnt know she had Hep C since there was no Hep C until 92 My grandmother had liver disease but mild because she drank she stopped drinking and took meds and i guess got better. My question to the dr is " is this autoimmune hepatitis?? and to me that seems scarier than just viral Hepatitis. I was thinking about talking to her drs in Mt.Sinai Hospital in NYC. They did her transplant and have a Liver disease dept. I'll call her social worker monday and ask well i had my biospy on 2/21/07 and tonight Dr Cohen called and said > it was grade 1, thats good and he wouldnt do anything just keep up > with check ups and want to another biospy in 2-3 years. IM TOO HAPPY > > Though i know have to work on my diet, lose, and exercise and learn > more about herbal remedies and seek out DR. null or someone that > is trained to natural healing. If i can prevent further damage of the > liver and progression of virus that is what I really want. > > Issue with HMO why wouldnt I visit Dr Cohen (GI) instead of going back > to my Primary care Physican PCP. Seems ridiculus to me oh well > > IM STILL HAPPY and relieved > > Latoya > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Why do you think its auto-immune hep? Is there something that I missed here? IF you got it from your mom, its NOT AI hep, it would be from blood to blood from your mom to you. I think you should ask any questions of any doc who knows about hep c and transplantation if you need to.. but let us know what you find out,, ok? thanksLatoya <blackat2010@...> wrote: I think I had it since birth and Im 30 yrs old. I have no other risk factors myself, no drugs or drinking alcohol no blood transfusions etc. I was a csection birth also, and she had bleeding complications etc.My mother on the other hand an liver transplant 10 yrs ago because of drinking, drugs and Hep C. I guess she didnt know she had Hep C since there was no Hep C until 92 :(My grandmother had liver disease but mild because she drank she stopped drinking and took meds and i guess got better. My question to the dr is "is this autoimmune hepatitis?? and to me that seems scarier than just viral Hepatitis.I was thinking about talking to her drs in Mt.Sinai Hospital in NYC. They did her transplant and have a Liver disease dept. I'll call her social worker monday and ask well i had my biospy on 2/21/07 and tonight Dr Cohen called and said > it was grade 1, thats good and he wouldnt do anything just keep up > with check ups and want to another biospy in 2-3 years. IM TOO HAPPY> > Though i know have to work on my diet, lose, and exercise and learn > more about herbal remedies and seek out DR. null or someone that > is trained to natural healing. If i can prevent further damage of the > liver and progression of virus that is what I really want. > > Issue with HMO why wouldnt I visit Dr Cohen (GI) instead of going back > to my Primary care Physican PCP. Seems ridiculus to me oh well > > IM STILL HAPPY and relieved > > Latoya> > > > > > > Jackie>Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2009 Report Share Posted July 21, 2009 Thanks for this. Your opinion echos the group's. I am listening carefully. I have been curious because most in the group had lots of "issues" leading up to the diagnosis and surgery-my son has mild hearing loss. Is otherwise extremely well. No history of lots of colds or ear infections.Some of the people here have issues that are quite common to one another-strep, lots of ear infections as a kid/adult, other health issues. I am interested in getting to the bottom-perhaps a general immune system dysfunction that can be worked on from a holistic perspective-that kind of thing. It doesn't mean my son won't have surgery-it does mean that we will work on areas of our control to mitigate future damage/growth and recovery. No one can say for sure that alternative therapies won't help. Obviously, studies wouldn't be done as that would be in-humane to have double-blind/controlled studies, but I believe that the body has a natural state of equilibrium and health and when dis-ease sets in we owe it to ourselves to address the cause. I wouldn't count on wholistic medicine to deal with anything acute-like a broken leg or gash in one's skull-but this whole cholesteatoma thing is a long term abnormal growth issue that complementary medicine has great success in addressing. Cleaning up our diets is an area we can all take control over. I am not being naive or frivolous-I have seen miracles happen far too often to dismiss the amazing healing power of the body and mind. It is unhelpful and narrow-minded to dismiss opportunities for natural healing. It's never a good idea to close doors, especially when one is suffering! Sadly, allopathic medicine has little to offer to relieve this problem and even the relief they do provide, while saving lives, is destructive in itself. And this is where my journey to know more arose. Clearly I am frustrated by the lack of interest amongst the medical professionals to determine cause and work on prevention, but perhaps it was always only a pipe-dream to think that allopathic medicine would be interested in exploring this avenue. Perhaps I will make that avenue one of my own projects in the future. Luckily for me I joined this group to get "perspective" and I'm so glad I did. We will deal with "what is" and will work on the future one day at a time. Knowing I can ask for advice and it will be generous offered is wonderful. Thanks for taking the time to reply Jackie-it really does mean the world to me. Denna Poulos From: jackiekylekatelyn <sjcolwell@...>cholesteatoma Sent: Sunday, July 19, 2009 3:57:58 PMSubject: Re: who regrets having this surgery ---Hi DennaI don't think there is any other choice for this except having the surgery. I wish my c-toma had been diagnosed earlier. By the time the doctor figured out what was wrong, it had already destroyed all the hearing bones and my eardrum. So delaying surgery is definitely NOT going to help at all, and will only cause more problems for your son. This disease will not go away with health foods and alternative medicines (though it would be nice if it did!). Surgery is the only choice. It's true that the surgery itself can cause some problems, but my cholesteatoma had already caused a number of problems before I had surgery, such as pain, hearing loss, tinnitis, total loss of my eardrum, etc. So please, don't delay surgery for your son hoping for some type of alternative treatment. There isn't any.Jackie In cholesteatoma, "supermom1@. .." <supermom1@. ..> wrote:>> Hi everyone,> > I've been chatting with a few of you. No one seems immune from many problems after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes in mouth, balance issues, etc. And they seem to drag on for years, in some cases. Would you do this again? Do you ever wonder if this surgery was really necessary? Of course, NOT doing it means, as some have said, you live as a "ticking time bomb", but has anyone considered finding a way to disolve the growth, through diet or any other complementary means? There really has to be a better answer, don't you think? Has anyone asked their surgeon what the worse case scenario is, and I mean the worst, that could happen in the distant future if surgery is not done? These are important questions that I prefer to have answers to before I subject my 11 year old to this surgery with so many "after isues". Thanks for any of your thoughts in advance.> Quote Link to comment Share on other sites More sharing options...
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