Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Ahh, good old CAT hits the nail on the head again. You are just way too kewl! How do always know exactly what to tell us. And tell it sooooo exceptionally well. Never change. Tom from PA > > Greetings fellow slayers > > Seems our members have been going through a great deal of trials and tribulations. > > From having to live alone ( I do with my dog Jake) I have no family, but I do have a plethora of wonderfully supportive, caring cyber and phone friends. Without whom, my soul would surely shrivel...lol > > The Beast that is Stills Disease cuts a wide swath in our lives. It makes us (and family members) question the reality of SD. Trust me when I say that everyone goes through that stage, where your closest friends and family say, or want to say " can't you just get OVER it?) > They do not have to live with the dragon every day, they don't know the debilitating symptoms, nor do they understand the nature of the disease. > For the most part it is invisible to others, and therein lies the rub. > " But you LOOK okay " how many times I have hears those words! > > My husband of 20 years decided HE couldn't deal with it, and left. > Wish I could " leave " this disease too..lol > > Aside from the physical issues we deal with, there is the mental health issues that come with a chronic disease. Depression!!!! > > Depression must be dealt with, as it ascerbates already compromised health issues. Depression leads to more pain, and visa versa. > Please be aware of this and don't try and " handle " it on your own! > See and speak to your Doctor about depression and any other issues you might have! > > To everyone, I know how difficult it is to be strong all the time.....allow yourself some time to grieve the life you had, after all SD creates a terrible loss of self. It shouldn't but it does....we are all MORE than the disease we have. > > smiles and regards > Cat > > > __________________________________________________________________ > Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr.com/gift/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Ahh, good old CAT hits the nail on the head again. You are just way too kewl! How do always know exactly what to tell us. And tell it sooooo exceptionally well. Never change. Tom from PA > > Greetings fellow slayers > > Seems our members have been going through a great deal of trials and tribulations. > > From having to live alone ( I do with my dog Jake) I have no family, but I do have a plethora of wonderfully supportive, caring cyber and phone friends. Without whom, my soul would surely shrivel...lol > > The Beast that is Stills Disease cuts a wide swath in our lives. It makes us (and family members) question the reality of SD. Trust me when I say that everyone goes through that stage, where your closest friends and family say, or want to say " can't you just get OVER it?) > They do not have to live with the dragon every day, they don't know the debilitating symptoms, nor do they understand the nature of the disease. > For the most part it is invisible to others, and therein lies the rub. > " But you LOOK okay " how many times I have hears those words! > > My husband of 20 years decided HE couldn't deal with it, and left. > Wish I could " leave " this disease too..lol > > Aside from the physical issues we deal with, there is the mental health issues that come with a chronic disease. Depression!!!! > > Depression must be dealt with, as it ascerbates already compromised health issues. Depression leads to more pain, and visa versa. > Please be aware of this and don't try and " handle " it on your own! > See and speak to your Doctor about depression and any other issues you might have! > > To everyone, I know how difficult it is to be strong all the time.....allow yourself some time to grieve the life you had, after all SD creates a terrible loss of self. It shouldn't but it does....we are all MORE than the disease we have. > > smiles and regards > Cat > > > __________________________________________________________________ > Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr.com/gift/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Ahh, good old CAT hits the nail on the head again. You are just way too kewl! How do always know exactly what to tell us. And tell it sooooo exceptionally well. Never change. Tom from PA > > Greetings fellow slayers > > Seems our members have been going through a great deal of trials and tribulations. > > From having to live alone ( I do with my dog Jake) I have no family, but I do have a plethora of wonderfully supportive, caring cyber and phone friends. Without whom, my soul would surely shrivel...lol > > The Beast that is Stills Disease cuts a wide swath in our lives. It makes us (and family members) question the reality of SD. Trust me when I say that everyone goes through that stage, where your closest friends and family say, or want to say " can't you just get OVER it?) > They do not have to live with the dragon every day, they don't know the debilitating symptoms, nor do they understand the nature of the disease. > For the most part it is invisible to others, and therein lies the rub. > " But you LOOK okay " how many times I have hears those words! > > My husband of 20 years decided HE couldn't deal with it, and left. > Wish I could " leave " this disease too..lol > > Aside from the physical issues we deal with, there is the mental health issues that come with a chronic disease. Depression!!!! > > Depression must be dealt with, as it ascerbates already compromised health issues. Depression leads to more pain, and visa versa. > Please be aware of this and don't try and " handle " it on your own! > See and speak to your Doctor about depression and any other issues you might have! > > To everyone, I know how difficult it is to be strong all the time.....allow yourself some time to grieve the life you had, after all SD creates a terrible loss of self. It shouldn't but it does....we are all MORE than the disease we have. > > smiles and regards > Cat > > > __________________________________________________________________ > Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr.com/gift/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Hey Cat I still dont see my member page on stills I worked hard on my info is it in the works? Well Im totaly unemployed now a bit depressed but working on fighting the dragon. Also looking into help now I heard its going to be a fun ride with ssi UGH! Wish me luck! Ann Fultz This n' that Greetings fellow slayers Seems our members have been going through a great deal of trials and tribulations. From having to live alone ( I do with my dog Jake) I have no family, but I do have a plethora of wonderfully supportive, caring cyber and phone friends. Without whom, my soul would surely shrivel...lol The Beast that is Stills Disease cuts a wide swath in our lives. It makes us (and family members) question the reality of SD. Trust me when I say that everyone goes through that stage, where your closest friends and family say, or want to say " can't you just get OVER it?) They do not have to live with the dragon every day, they don't know the debilitating symptoms, nor do they understand the nature of the disease. For the most part it is invisible to others, and therein lies the rub. " But you LOOK okay " how many times I have hears those words! My husband of 20 years decided HE couldn't deal with it, and left. Wish I could " leave " this disease too..lol Aside from the physical issues we deal with, there is the mental health issues that come with a chronic disease. Depression!! !! Depression must be dealt with, as it ascerbates already compromised health issues. Depression leads to more pain, and visa versa. Please be aware of this and don't try and " handle " it on your own! See and speak to your Doctor about depression and any other issues you might have! To everyone, I know how difficult it is to be strong all the time.....allow yourself some time to grieve the life you had, after all SD creates a terrible loss of self. It shouldn't but it does....we are all MORE than the disease we have. smiles and regards Cat ____________ _________ _________ _________ _________ _________ _ Looking for the perfect gift? Give the gift of Flickr! http://www.flickr. com/gift/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Greetings Dragon Slayers It's been awhile since my last post. I do read the majority of e-mails, but somedays, when there are 150 or more I scan and delete. Some of this COULD be managed by e-mailing to each other Privately, instead of using the mailing list as a central mail room! I'm not certain when we lost control of the mailing site.....but instead of hitting reply, post to your e-mail friends privately, PLEASE! Putting someone's name on a reply to the entire group doesn't make it acceptable practise. I fear that may be someone who really needs our attention, and they will be missed or passed over because we are having to use the delete key too often! I have been in a flare for some weeks now, and with no end in sight. I am worried about making it to the Conference this year. I saw my Doc yesterday, and she wants me to see an RD SAP. There are so few in the vicinity it will mean my making a trip to another town.....my Doc wont proscribe and DMARDS...she did agree to let me go back on a low dose of the dreaded Roids in hopes of controlling the extreme pain, even a little. To the newbies, a warm welcome, as usual, we're sorry you have to be here, but glad that we can be of some assistance to you in your journey with the Dragon. Here you will find wonderfully warm and supportive people. They will try and inform and support you. ON THAT note, I must explain that the information you might get from fellow members SHOULD NOT, AND CAN NOT take the place of your RD or PCP's directions. HOME remedies are not to be taken as gospel......this site is for the exchange of events, support and caring, and NOT for any " actual " medical suggestions. I would hope that no one tries a home remedy without first discussing it with their medical professionals. We need some members to do some work with the Foundation. We need a " Nursing Director " someone with at least an RN's degree. In the past we have had Kathleen Brown, and Barbara Gardner. Unfortunately both of them are too unwell to serve in that position. The position is a little bit like a watch-dog, reading the e-mails, and keeping topics on the bstright and narrow, as well as answering some queries from the members. If there is someone in our membership that would be able and willing to become involved in assisting us in this area please e-mail me at Cattriller@... or Cattriller60@... We are considering revitalising our Newsletter. It's been several years since we tried to get it going. We'r looking for a few people who might be interested in getting involved with this. Editor, Writers, Interested people can e-mail me at the above addresses. Well dearhearts, guess that's about all the this n that I have for now. Smilesd and regards CAT may the dragon miss you and the angels find you __________________________________________________________________ Looking for the perfect gift? Give the gift of Flickr! http://www.flickr.com/gift/ Quote Link to comment Share on other sites More sharing options...
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