oakleaf Posted August 30, 2008 Group: Advanced Member Followers: 1 Topic Count: 29 Topics Per Day: 0.00 Content Count: 214 Content Per Day: 0.03 Reputation: 7 Days Won: 0 Joined: 03/29/2004 Status: Offline Birthday: 09/01/1963 Share Posted August 30, 2008 heya ya'll, im just wondering if there are others here that have chronic illnesses and are finding it hard to talk about how you are feelin....is there a forum where we can go to and possible help each other deal with our pain and confusion....a place that we can go to and can get support and not feel like we are alone in our sufferin...or am i the only one that feels alone and that i have to deal with all my chronic illnesses by myself.....i am sufferin with several auto immune diseases that have no cure and way to many other illnesses that are linked together....i aint lookin for prayer of healin but im lookin for others who are goin thru life with incurable diseases and possibly help each other thru good days and bad days....basically a support group forum or something like it....if you are chronically ill lets get together and see if we cant help each other by sharing our experiences, pain, and anything else that we can think of...even makin jokes about it anything that would help us get thru the tough times......oak 1 Link to comment Share on other sites More sharing options...
Xan Posted August 30, 2008 Group: Diamond Member Followers: 1 Topic Count: 32 Topics Per Day: 0.01 Content Count: 1,060 Content Per Day: 0.18 Reputation: 18 Days Won: 0 Joined: 05/02/2008 Status: Offline Birthday: 10/23/1970 Share Posted August 30, 2008 I know this is not what you are asking for, but there is a new autoimmune drug that was approved last year for some obscure blood disease, but it has also been tested on lupus, nephritis, and rheumatoid arthrits, etc. all with very positive results, and it does not have the side-effects of Enbrel. The drug is called Soliris. I'm sure it won't reverse the damage that has already been done, but it should prevent further damage and protect your kidneys and prolong your life and quality of life. 1 Link to comment Share on other sites More sharing options...
eagleswings Posted August 30, 2008 Group: Senior Member Followers: 5 Topic Count: 91 Topics Per Day: 0.01 Content Count: 613 Content Per Day: 0.09 Reputation: 7 Days Won: 0 Joined: 02/09/2005 Status: Offline Birthday: 04/02/1959 Share Posted August 30, 2008 Oakleaf, I just tried calling my older sister , she has lots of auto immune illnesses and has a chat where she goes for this and I will come back when she calls me and let you know where the forums are.... its a support group for those going thur what you are... Link to comment Share on other sites More sharing options...
oakleaf Posted August 30, 2008 Group: Advanced Member Followers: 1 Topic Count: 29 Topics Per Day: 0.00 Content Count: 214 Content Per Day: 0.03 Reputation: 7 Days Won: 0 Joined: 03/29/2004 Status: Offline Birthday: 09/01/1963 Author Share Posted August 30, 2008 Oakleaf, I just tried calling my older sister , she has lots of auto immune illnesses and has a chat where she goes for this and I will come back when she calls me and let you know where the forums are.... its a support group for those going thur what you are... heya eagles, i know of a couple places im just wonderin if there are people here at worthy that would like to talk and get support without goin to another place, i like worthy and i feel this is somethin that is lackin here...of course there will always be people who think that our faith is lackin which it aint and that GOD will heal us but GOD gave us these illnesses for a reason and i think we need to explore the reasons.....stuff like that....thanks....oak Link to comment Share on other sites More sharing options...
oakleaf Posted August 30, 2008 Group: Advanced Member Followers: 1 Topic Count: 29 Topics Per Day: 0.00 Content Count: 214 Content Per Day: 0.03 Reputation: 7 Days Won: 0 Joined: 03/29/2004 Status: Offline Birthday: 09/01/1963 Author Share Posted August 30, 2008 I know this is not what you are asking for, but there is a new autoimmune drug that was approved last year for some obscure blood disease, but it has also been tested on lupus, nephritis, and rheumatoid arthrits, etc. all with very positive results, and it does not have the side-effects of Enbrel. The drug is called Soliris. I'm sure it won't reverse the damage that has already been done, but it should prevent further damage and protect your kidneys and prolong your life and quality of life. heya xan, ive had so many different meds and treatments over the years and one almost killed me earlier this year....info like this is helpful i can always ask my doc about it....thanks......oak Link to comment Share on other sites More sharing options...
Northern lass Posted August 30, 2008 Group: Diamond Member Followers: 2 Topic Count: 106 Topics Per Day: 0.02 Content Count: 1,072 Content Per Day: 0.17 Reputation: 25 Days Won: 0 Joined: 08/13/2006 Status: Offline Birthday: 02/27/1948 Share Posted August 30, 2008 Oakleaf I am with you in this! I have been recently diagnosed with Parkinson's disease. Today I have felt very alone although my husband is here. PM me any time and I will pray for you. I'd also support any little group that gets started here in Worthy! Link to comment Share on other sites More sharing options...
oakleaf Posted August 30, 2008 Group: Advanced Member Followers: 1 Topic Count: 29 Topics Per Day: 0.00 Content Count: 214 Content Per Day: 0.03 Reputation: 7 Days Won: 0 Joined: 03/29/2004 Status: Offline Birthday: 09/01/1963 Author Share Posted August 30, 2008 Oakleaf I am with you in this! I have been recently diagnosed with Parkinson's disease. Today I have felt very alone although my husband is here. PM me any time and I will pray for you. I'd also support any little group that gets started here in Worthy! ive been told or it has ben hinted at that i may have parkinsons and i fugured since i already got a mile long list i dont need another thing added to it, so i never had the testing done....well i could have parkinsons, huntintons, ALS(lou gerhigs disease), ms, and few others....if i got it i dont want to klnow...you can pm me anytime if your frustrated or hurtin and need someone to talk to...i'll be here....oak 1 Link to comment Share on other sites More sharing options...
Guest ~zoe-girl~ Posted August 31, 2008 Share Posted August 31, 2008 I have restless leg syndrome, early parkinson- hand tremors etc and immune issues! Gosh I sound so horribly broken down, but have just learned to live and work through this all~ Link to comment Share on other sites More sharing options...
oakleaf Posted August 31, 2008 Group: Advanced Member Followers: 1 Topic Count: 29 Topics Per Day: 0.00 Content Count: 214 Content Per Day: 0.03 Reputation: 7 Days Won: 0 Joined: 03/29/2004 Status: Offline Birthday: 09/01/1963 Author Share Posted August 31, 2008 I have restless leg syndrome, early parkinson- hand tremors etc and immune issues! Gosh I sound so horribly broken down, but have just learned to live and work through this all~ i have the following deseases and health issues.....ankylosing spondylitis, rheumatoid arthritis, osteo arthritis, fibromyalgia, restless leg syndome...these are auto immune desease that has no cure.....chronic back pain, tremors/spasms, osteoporosis, depression/anxiety, high cholesterol, lyme desease, scoliosis.....after all of this i decided not to do any more testing its really messed up havin to deal with pain and fatigue 24/7 and knowing there is nothin that can help it...unless i fill myself up with heavy duty meds......oak Link to comment Share on other sites More sharing options...
RebekahDavid Posted August 31, 2008 Group: Royal Member Followers: 1 Topic Count: 320 Topics Per Day: 0.05 Content Count: 3,166 Content Per Day: 0.45 Reputation: 23 Days Won: 0 Joined: 12/31/2004 Status: Offline Share Posted August 31, 2008 Hey oak dear brother in the Lord! i can not say i know how you feel because i am not walking in your shoes. i can tell you that sometimes life seems really really tough tho by the circumstances we find ourselves in whether physically or emotionally or both. the enemy would have us believe that we are alone in these storms, that no one really cares,that the storms will overwhelm us, even that the Lord can no longer use us. that is so not true! we are never alone because our God is with us! praying for you bro. love your sister in Christ, Rebekah David 1 Link to comment Share on other sites More sharing options...
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