Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 To be sick or not to be sick..... I have never joined a group like this for fear of making a declartion that I am indeed an ill person, a person that is in need of support for said illness and this was one thing I was not all that happy to admit. But the fact is that I am sick, in need of support and willing to help others if I am able. I look forward to hearing from others in the know about a disease that has consumed me and my life for longer then I fear I even know. Sorry for the melodrama but I feel less then well today and not all pleased. I am seeing the doc tomorrow and I hope it will not be yet another fight to be heard and not dismissed like a child. thank you for your time, Morrigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Morrigan-- I am glad you decided to join this wonderful group. We are like a family here. Here to give support and to be there when needed. Tell us a bit about yourself. Where are you from? When were you diagnosed, etc........ And I do know what you mean when you said being dismissed like a child.. That sucks... Please know that we are here for you. Take care of you , from Iowa... Questing for identity.... To be sick or not to be sick.....I have never joined a group like this for fear of making a declartion that I am indeed an ill person, a person that is in need of support for said illness and this was one thing I was not all that happy to admit. But the fact is that I am sick, in need of support and willing to help others if I am able.I look forward to hearing from others in the know about a disease that has consumed me and my life for longer then I fear I even know.Sorry for the melodrama but I feel less then well today and not all pleased. I am seeing the doc tomorrow and I hope it will not be yet another fight to be heard and not dismissed like a child.thank you for your time, Morrigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 I live in Seattle Wa and was dx about 3 years now. The neuro aspect, in the last year. That being said, I have never been told specifically the involvment in my brain, only that it exist. I take 11 mgs of Methotrexate once a week and lots o` Ultram for pain. I take other meds for bipolar and PCOS. All of which I wonder if I really have when I look at the research on Sarcoid. But until it is found to be otherwise, this is how it is all treated. I for the most part can tolerate this life (thanks to pain meds!) but there are times that I cry for the freedom I so often never took advantage of. Now I hope to continue my education and create a life with the person I have recently found and love very much. I have a magical 9 yr old daughter that has been very understanding for her mother's lack of energy and I am looking forward to buying a house this summer with my partner. But for all the optimism I have for my future...I have just as much fear of my inability to participate in this future. I see the doc tomorrow due to my flair up that has been in the making for about 4 weeks now. What I find of interest here is that although I tell the docs of many of my symptoms that are mirrored here in others, that they are so often dismissed as nothing and having nothing to do with Sarciod. I wonder if my doc is too specialized! He is well known and perhaps has a God complex. I was just considering a change in care when today my body decided to give in and be truly sick...not just that mild flu like sick most of us live with day after day. So I shall see what Dr. Raghu will say to all this tomorrow. Thanks, Morrigan > Morrigan-- > > I am glad you decided to join this wonderful group. We are like a family here. Here to give support and to be there when needed. > > Tell us a bit about yourself. Where are you from? When were you diagnosed, etc........ > > And I do know what you mean when you said being dismissed like a child.. That sucks... > > Please know that we are here for you. > > Take care of you , > > from Iowa... > > Questing for identity.... > > > To be sick or not to be sick..... > > I have never joined a group like this for fear of making a > declartion that I am indeed an ill person, a person that is in need > of support for said illness and this was one thing I was not all > that happy to admit. But the fact is that I am sick, in need of > support and willing to help others if I am able. > > I look forward to hearing from others in the know about a disease > that has consumed me and my life for longer then I fear I even know. > > Sorry for the melodrama but I feel less then well today and not all > pleased. I am seeing the doc tomorrow and I hope it will not be yet > another fight to be heard and not dismissed like a child. > > thank you for your time, Morrigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Hi and welcome to this fantastic group. I haven't been here long myself, but already I feel right at home, with a great bunch of people from around the world, who suffer with this HORRID problem!! My name is Alison and I live in the UK, I was dx with Sarc back in '94, but now I have Neurosarc.... We all suffer with the same illness, but it affects us all differently.... Some here are VERY sick, some are sick some of the time.. but non the less, we are here to help, and support you in any way you feel you need it... Take care, and once again, WELCOME!! Love Alison x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Dear Morrigan, We all need melodrama now and then! This is a SUPPORT group, and we listen and support. If we can't answer a particular e.mail, we simply send Love - trusting that it will have it's positive effect even if we don't announce that we've done it! It's ok to vent!! I admire your bravery in looking at and recognising your own denials/suppressions and I applaud your reaching out when you didn't want to have to. Been there-done that! Hang in there! You'll find this group a wonderful group of Friends! Love, Jeri Quote Link to comment Share on other sites More sharing options...
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