Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 Hi, I'm so sorry your mom has this disease. I remember joining this group with words like " A week ago I never even HEARD of LBD and now, here I am... " Now that I have just recently reached the end of this journey (today was Dad's funeral), I can tell you where I have no regrets. When your mom has clarity, talk to her openly, let her know that you will make sure everything is ok, that she is safe and she is loved. When your mom says things that are weird or non-sensical, go along with it. It feels weird to do at first, but but once you accept that this is part of the disease, it helps your loved one to not feel that there is so much " wrong " with them (or you!). For example if my Dad would say " shhh, the people can hear us " I wouldnt say " what people? " (to him the people were very real) ..so simply saying " ok, I will speak more quietly " works fine. If my Dad looked at me and thought I was his mother, not his daughter, I would just go along with it. Somedays I am sure my Dad woke back up in a world where he was 4, why mess with that? I mean, just imagine living in a world where nothing makes sense all the time. We, the caregivers, have the opportunity to ease the fear and uncertainty. I dont mean lie 24/7, but take every moment as it comes and do what you can, because although this is hard on us and you want to remind and correct ....it is not worth the anguish you put yourself and your loved one through. Its a long journey, stay strong, take care of yourself, and just love your Mom through it all. > > Hi, I'm a new member to this group. Let me tell you a little about my > situation. My Mom was diagnosed w/ Parkinson's in 2000. I know she had > it for about 2 yrs prior but was unable to get through to the MD. In > 2000, I sought a new MD, whom is a Geriatric MD. She immediatly put Mom > in the hospital and diagnosed PD in 2 stage. Started trating her and > was sent to a Neurologist. She has been very well cared for by both MD's > Two and one half years ago Mom started " failing " mentally and > physically. She's been taken care of w/ 24hr homecare givers in her > home ever since. We were lucky that they had save a lot of money. > Since Nov. 2005 has been treated for LD. We have tried several meds > that have helped but seem to " wear off " .She's now on Seroquel. and I > also have to give her Geodon injections about once a wk to " break " the > frightening hallucinations. I'm also a nurse. > I'm having a lot of trouble dealing w/ this and there is no support > group to talk to in my area (rural IL. I find it sooo hard to see her > this way and have found no answers. As a nurse, I feel at times I > should be able to " fix " it. Even though I know that I can't. > Mom opnly live about 1 mile from me. I talk to everyday and see her > about 3x's a wk. (I have a hard time going to see her in this condition. > I'm at aloss on how to comfort her !!!! Does anyone have advise???? > Thanks, Lynn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 , You made my day and have helped me enormously. All the best to you and your father is watching down on you and thanking you. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 We are located around Champaign. Home of the Uof I, Fighting Illini. --------------------------------- Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Thanks Irene, your a gem. I'm dealing with anxiety/depression issues again. Have had problems with this since my Dad died suddenly in 1999. Dealing with Mom for the last 2 + years is really taking a toll on my emotions. Lynn --------------------------------- Never Miss an Email Stay connected with Yahoo! Mail on your mobile. Get started! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010  Fiona  Welcome and glad you found us but as we always say sorry for the resone you were looking at the same time.  You made a statement that I just have to say something about and that was how you read what so many have gone threw. Well in a way it’s true but also not true. See on the sight for the most part the ones that are active in posting also are active in there fight with stills and the ones you do not read like the rest of us are the ones who are doing very will and living almost normal life’s again. its funny how that works when you feeling good and active most not all but most tend to stop posting and go on enjoying life and that’s a good thing now why they do not post only they could tell you that but my guess would be there to busy making up for lost time or at lest that’s how I like to look at it.  Now the rest of us some still post even when doing some what good but that is not the norm. So what you read do not let it make you think that, that is all stills will hold as its not. I as others have had what I call a remission and mine lasted a few years thankfully it was also at a time I really needed it.  Now you also said you would like to have another child well there is a gal here doing just that with lots of planning and work with her doctors her dream of being a mother is coming true. I do know it meant some changes in meds and also a stopping of others and a wait tell they were out of her system but right there you go a good thing and one that is up with your dreams also. So see it can happen and yes not every one with stills suffers every day for the rest of there lives some do and some do not. Stills are strange in that it’s an individual illness same as the meds what works for one may not work for others and so on. so hang a round ask all you want on almost any thing and some one is bound to say something to you about it because we are diverse and some of us older ones know others that no longer post because there doing what I call Living Hugs and welcome  The Redneck Marty G. Be careful about reading health books. You may die of a misprint. Mark Twain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2010 Report Share Posted November 28, 2010 Welcome Fiona, It is nice to see some people getting quicker diagnoses and medications trials sooner than later. I think it helps so much to have a chance for less damage in the long run. We hope you find some relief with the medications and like us here. Till soon, From: Fiona Brady Subject: New Member Hello, I'm new to this group and i've been 'lurking' for a while. Thought it was about time I introduce myself. I am Fiona and i'm 28 yrs old. I was diagnosed with Still's in April of this year but the onset was August of last year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 Hi Alison, welcome to the group. I am sorry you are having to deal with this disease, but you have found a great group here. Everyone is very kind and helpful. Your story sounds a lot like mine. I have been sick off and on since 1994 and was just diagnosed with Still's in July 2010. The rash is the final clue that helped get my diagnosis. I am 39 years old and married with a 14 year old son and an 11 year old daughter. My husband is in the military and I home school the kids because we move so often. I think this is one of the reasons it was so hard to get a diagnosis. We recently moved to D.C. and I have been going to the s Hopkins Rheumatology clinic in Baltimore. They are sending me to the National Institute of Health for treatment. I have been on a waiting list since February but still do not have an appointment with NIH. My doctor wants me to go to NIH before he starts me on Kineret. I know a lot of people are using Kineret and are having good results. From what I hear it does take some time. Also, it is possible to go into a remission. I have had 3 severe flares that were followed with relative disease inactivity. You just never know when a flare will come and go. So in addition to taking the meds the doctor gives you, never give up hope for remission. I have heard from many who have been in really bad shape and then turned around and were able to have a somewhat normal life. I'm not sure what meds you are on, but my doctor gave me muscle relaxers to take when I am in extreme pain. In addition to the joint swelling, my muscles tend to go into spasms when I am in a flare. The muscle relaxers really help me, but they do usually make me very sleepy. It might be worth asking your doctor about them. Hope you feel better soon! Hugs, Tracie in D.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 Hay Alison Sorry you have to be here, but glad we are here for you. This is the most informative, supportive and empowering group of people you will find. The members will help you through your good times and bad. I hope that we share more good times with you. It's difficult to have to have waited for so long for a diagnosis. Still's is a life altering disease, as you have said. I hope we can help you through the rough patches! Smiles and regards Cat ________________________________ Hello, My name is Alison and I am 40 years old. I have been ill since 1993 and finally diagnosed with Stills in 2009. I am married with a 16 year old son and my life has been altered by this disease. I have been diagnosed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2011 Report Share Posted April 10, 2011 Dear Alison; I have had Stills for 3 years now. First of all,  we all cry. Cry all you want to it is ok. I am a 57 Year old Male and this Monster makes me cry. Before I got Stills I never cryed . You said you need to help yourself and your Family. I understand that. I hope your family knows what you are going through. We look normal but we are very sick and when we are down and out people and our family can't understand our pain and this illness. It is normal to look at someone and see a normal person. AH! But that normal looking person really is very sick and the one you live with or the one at the store you shop at has no idea you are sick.. Have you set your family down and had a tlak about all your pain and educate them about Stills ? You need to take care of yourself and your family needs to take care of You. You don't need to be worring about cooking dinner every night and do all the laundry and house work. You need your family to help You. Have a family meeting. Have one ones a week and let them know how you are doing. Tell the truth and do not hide your pain and crying. Stress Will make you sicker, I know for a fact it will. Try to get ahold of your self and get info to teach your family your illness and things might change around the house. You need that compassion and love from your whole extended family. You can't do it all by your self. Take charge of your life and try to overcome the Stress and don't look at the future, look at the hour and the day. That is all we can do for ourselves. Remind yourself that ( I am sick and I can stay in bed all I want ) Don't feel guilty about it. I Pray you have a good hour and or day. Look to God for help. Try to get on the right med's and you might feel at least 40% better with the right med's and Docter. If said anything out of line I am sorry. May God be in your Heart. Hugs from the whole group,we care about you, you are one of us. GARY ----- Forwarded Message ---- To: Stills Support Group <Stillsdisease > Sent: Sat, April 9, 2011 4:19:02 PM Subject: New Member  Hello, My name is Alison and I am 40 years old. I have been ill since 1993 and finally diagnosed with Stills in 2009. I am married with a 16 year old son and my life has been altered by this disease. I have been diagnosed with everything from Fibra Myalgia to MS to " its all in your head " . About 3 years ago I started noticing a pattern of fevers and rashes and found a new doctor who diagnosed me with Adult Onset Stills Disease. I am taking Kineret along with numerous other meds and am currently in a severe flare up right now. Currently I am unable to get out of bed and in so much pain I spend most of my time crying. At present I am at a loss of what to do to help myself and my family. Any advice will be greatly appreciated and I look forward to getting to know you and offering my support. Sincerely, Alison Hendershot Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2011 Report Share Posted April 10, 2011 Well said Tracie ! ----- Forwarded Message ---- To: stillsdisease Sent: Sat, April 9, 2011 5:42:08 PM Subject: RE: New Member  Hi Alison, welcome to the group. I am sorry you are having to deal with this disease, but you have found a great group here. Everyone is very kind and helpful. Your story sounds a lot like mine. I have been sick off and on since 1994 and was just diagnosed with Still's in July 2010. The rash is the final clue that helped get my diagnosis. I am 39 years old and married with a 14 year old son and an 11 year old daughter. My husband is in the military and I home school the kids because we move so often. I think this is one of the reasons it was so hard to get a diagnosis. We recently moved to D.C. and I have been going to the s Hopkins Rheumatology clinic in Baltimore. They are sending me to the National Institute of Health for treatment. I have been on a waiting list since February but still do not have an appointment with NIH. My doctor wants me to go to NIH before he starts me on Kineret. I know a lot of people are using Kineret and are having good results. From what I hear it does take some time. Also, it is possible to go into a remission. I have had 3 severe flares that were followed with relative disease inactivity. You just never know when a flare will come and go. So in addition to taking the meds the doctor gives you, never give up hope for remission. I have heard from many who have been in really bad shape and then turned around and were able to have a somewhat normal life. I'm not sure what meds you are on, but my doctor gave me muscle relaxers to take when I am in extreme pain. In addition to the joint swelling, my muscles tend to go into spasms when I am in a flare. The muscle relaxers really help me, but they do usually make me very sleepy. It might be worth asking your doctor about them. Hope you feel better soon! Hugs, Tracie in D.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011  Sorry your feeling as you are and I will add the time period of not having any DX at lest for me was one of the hardest to deal with. The next hardest one was that first flair that also sent me to the hospital many times over a year’s period. now you saying that you do not give up because of your kids and family that’s good to read and it is also why I feel council ling is also a good tool for the person who is ill and also the whole family every member in the home as not only has it or will it change your life but it will all of them also and so some extra help in sorting out how to deal recognize and handle the changes is always a good thing and one I wish I and my family would have done so yeas I speak from a 20 20 hind sight . I know I did get some after the fact and it helped me personally but as for the family it was way to late by then as we were no longer a family by then for many reasons and stills was the nail that was the biggest changer that one could not and would not deal with in our home so that left me and the kids on our own some thing that did not work out as in the end even that was removed from my life.  Now what I can tell you is normally the first flair seams to be the worst one also and that has been true for my self. I can also add to that and this may be hard to believe by you right now that having stills has also given me a few good things along with the bad its all in how one learns to look at it and accept it and live with it instead of against it with there arms wrapped around what was . we all change over time and we all can have things happen that we may not like but it all in how we work with them or over come them that makes us the people we are and already your showing how strong you are by posting her not only how you feel that you may have stills but also in how you are feeling personally as many even farther down the road can not do that so good for you that puts you ahead of it at the start already!  so with that welcome to our family and now that you are her and posted your no longer a visitor but a family member and the only sad thing about that is why your here but we also glad that we are here for you at the same time  The  Redneck  Marty G      I watch the sands of time run threw the hour glass of my life knowing I can not change what has passed. All I can do is live for today and hope for tomorrow and that it's a better day then the one I am leavening here today As I move into the one filled with hope that’s called tomorrow. Marty G 3/29/2011 To learn more about Stills Disease or to make a tax deductible donation:  http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011  Sorry your feeling as you are and I will add the time period of not having any DX at lest for me was one of the hardest to deal with. The next hardest one was that first flair that also sent me to the hospital many times over a year’s period. now you saying that you do not give up because of your kids and family that’s good to read and it is also why I feel council ling is also a good tool for the person who is ill and also the whole family every member in the home as not only has it or will it change your life but it will all of them also and so some extra help in sorting out how to deal recognize and handle the changes is always a good thing and one I wish I and my family would have done so yeas I speak from a 20 20 hind sight . I know I did get some after the fact and it helped me personally but as for the family it was way to late by then as we were no longer a family by then for many reasons and stills was the nail that was the biggest changer that one could not and would not deal with in our home so that left me and the kids on our own some thing that did not work out as in the end even that was removed from my life.  Now what I can tell you is normally the first flair seams to be the worst one also and that has been true for my self. I can also add to that and this may be hard to believe by you right now that having stills has also given me a few good things along with the bad its all in how one learns to look at it and accept it and live with it instead of against it with there arms wrapped around what was . we all change over time and we all can have things happen that we may not like but it all in how we work with them or over come them that makes us the people we are and already your showing how strong you are by posting her not only how you feel that you may have stills but also in how you are feeling personally as many even farther down the road can not do that so good for you that puts you ahead of it at the start already!  so with that welcome to our family and now that you are her and posted your no longer a visitor but a family member and the only sad thing about that is why your here but we also glad that we are here for you at the same time  The  Redneck  Marty G      I watch the sands of time run threw the hour glass of my life knowing I can not change what has passed. All I can do is live for today and hope for tomorrow and that it's a better day then the one I am leavening here today As I move into the one filled with hope that’s called tomorrow. Marty G 3/29/2011 To learn more about Stills Disease or to make a tax deductible donation:  http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Thanks for responding you guys. It helps just to have someone who understands listen. Was feeling especially down because i may have to put my beloved 12 yr old collie down very soon and trying to stretch that out til hubby's back in town for support---hey, I ought to wait til my Dr. appt....that will for sure trigger a flair for the big diagnosis I've been waiting for...god! How morbid! > >> > >> Dear Alison; I have had Stills for 3 years now. First of all,  we all cry. Cry > >> all you want to it is ok. I am a 57 Year old Male and this Monster makes me cry. > >> Before I got Stills I never cryed . > >> > >> You said you need to help yourself and your Family. I understand that. I hope > >> your family knows what you are going through. We look normal but we are very > >> sick and when we are down and out people and our family can't understand our > >> pain and this illness. It is normal to look at someone and see a normal person. > >> AH! But that normal looking person really is very sick and the one you live with > >> or the one at the store you shop at has no idea you are sick.. Have you set your > >> family down and had a tlak about all your pain and educate them about Stills ? > >> You need to take care of yourself and your family needs to take care of You. You > >> don't need to be worring about cooking dinner every night and do all the laundry > >> and house work. You need your family to help You. Have a family meeting. Have > >> one ones a week and let them know how you are doing. Tell the truth and do not > >> hide your pain and crying. Stress Will make you sicker, I know for a fact it > >> will. Try to get ahold of your self and get info to teach your family your > >> illness and things might change around the house. You need that compassion and > >> love from your whole extended family. > >> > >> You can't do it all by your self. Take charge of your life and try to overcome > >> the Stress and don't look at the future, look at the hour and the day. That is > >> all we can do for ourselves. > >> Remind yourself that ( I am sick and I can stay in bed all I want ) Don't feel > >> guilty about it. > >> > >> I Pray you have a good hour and or day. Look to God for help. Try to get on the > >> right med's and you might feel at least 40% better with the right med's and > >> Docter. If said anything out of line I am sorry. May God be in your Heart. Hugs > >> from the whole group,we care about you, you are one of us. > >> > >> GARY > >> > >> > >> ----- Forwarded Message ---- > >> From: " alisonmhendershot@ " <alisonmhendershot@> > >> To: Stills Support Group <Stillsdisease > > >> Sent: Sat, April 9, 2011 4:19:02 PM > >> Subject: New Member > >> > >>  > >> > >> > >> Hello, > >> > >> My name is Alison and I am 40 years old. I have been ill since 1993 and finally > >> diagnosed with Stills in 2009. I am married with a 16 year old son and my life > >> has been altered by this disease. I have been diagnosed with everything from > >> Fibra Myalgia to MS to " its all in your head " . About 3 years ago I started > >> noticing a pattern of fevers and rashes and found a new doctor who diagnosed me > >> with Adult Onset Stills Disease. I am taking Kineret along with numerous other > >> meds and am currently in a severe flare up right now. Currently I am unable to > >> get out of bed and in so much pain I spend most of my time crying. At present I > >> am at a loss of what to do to help myself and my family. Any advice will be > >> greatly appreciated and I look forward to getting to know you and offering my > >> support. > >> > >> > >> Sincerely, > >> > >> Alison Hendershot > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011  I am sorry to here about your collie. I know it was so hard on me to have to give up my Buddy when I was forced to move to Calif. He and I went every were together unless it was some were I would have to leave him in the truck for a long time like some doctor appointments. I got him some months before I became ill with stills and then for two plus years he was mu 24/7 buddy. so leaving him hurt and then learning what happened to him later for no reason except that he had been my dog made it that much worse. all I can say is 12 years is a long time and in that time you I am sure made many memory's and they will always be with you but yes its not easy as I know and many others here also know. but in the end be happy that you made a good home for him also O and about that flair its kind of like taking a car to the shop it never acts up when ya want it to but will every time ya don't LOL. Hugs   The  Redneck  Marty G      I watch the sands of time run threw the hour glass of my life knowing I can not change what has passed. All I can do is live for today and hope for tomorrow and that it's a better day then the one I am leavening here today As I move into the one filled with hope that’s called tomorrow. Marty G 3/29/2011 To learn more about Stills Disease or to make a tax deductible donation:  http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2011 Report Share Posted May 8, 2011 My Dearest New Member, Welcome to our site. Here you have found the place to come when you feel as you do now, " at your wits end. " We also welcome you to feel free to express any concerns you have as well as encouragement for other's; when there is something that you may relate to for example. I too am 51 years old. I know that you feel your life is ruined and truthfully right now, the state you are in, you more than likely could even reach out to some counseling. All of us need that from time to time, as life on earth isn't full of roses for most of us. As for your family needing you, Listen to me Please when I say; " Your family still has you " . You may all have to learn different ways to communicate; and different ways to spend time together as well, Try to embrace the new family you may become and all of you might just be up for something that evolves into something so remarkable that you and your family can embrace. k I don't have anything positive to offer re: hope because I am at my wits end. The joint pain has ruined my life. I have an ulcer from advil and am miserable. My family, hubby, 2 boys 17 and 8, want their mom back. I'm 51. I would end it if I didn't feel the need to carry on for them. Really. New Member > >  > > > Hello, > > My name is Alison and I am 40 years old. I have been ill since 1993 and finally > diagnosed with Stills in 2009. I am married with a 16 year old son and my life > has been altered by this disease. I have been diagnosed with everything from > Fibra Myalgia to MS to " its all in your head " . About 3 years ago I started > noticing a pattern of fevers and rashes and found a new doctor who diagnosed me > with Adult Onset Stills Disease. I am taking Kineret along with numerous other > meds and am currently in a severe flare up right now. Currently I am unable to > get out of bed and in so much pain I spend most of my time crying. At present I > am at a loss of what to do to help myself and my family. Any advice will be > greatly appreciated and I look forward to getting to know you and offering my > support. > > > Sincerely, > > Alison Hendershot > > Quote Link to comment Share on other sites More sharing options...
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