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Discussion Starter · #1 ·
Just wondering if anyone has been in a real bad situation, pain, symptoms, depression, despair etc and had to go out of state for help alone.I don't know how to begin getting help like airport arrangements, wheelchair, transport etc. Would love to know if anyone has been in my situation and how one can find volunteer services for people who disabled or what resourses are available for overall help. Will probably be away for about 5 days or longer. Never been out of state before and am really sick and scared.I thought the doctor would help out, but they don't do that ... don't know where to turn for help. Any suggestions? Would really appreciate it. I feel like I'm the only one in the world this bad and in this kind of situation ... I'm really scared. Also, hope I can hold out ... I've still got a whole month before I leave. Haven't even arranged my flight ... feel so helpless!Sorry for rambling. Having a real bad day ... lately all days are pretty bad and the pain is getting worse.
 

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metooo -If you don't have any family or friends to help out then call you local (either city/county or state office) of Health Services. They should be able to point you in the right direction for aid and tell you what criteria they use in deciding if someone qualifies for aid.The other place to check is your local church. If you don't belong to a parish check the closest Catholic or Jewish parish. The larger churches typically have aid for their members and frequently help non-members in need.Good luck.loon
 

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metooo -If you don't have any family or friends to help out then call you local (either city/county or state office) of Health Services. They should be able to point you in the right direction for aid and tell you what criteria they use in deciding if someone qualifies for aid.The other place to check is your local church. If you don't belong to a parish check the closest Catholic or Jewish parish. The larger churches typically have aid for their members and frequently help non-members in need.Good luck.loon
 

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why should you have to go out of state? most states have secondary diagnostic centers, usually a university hospital. referral to a specialized center is very rare and if that's need I would think your insurance should cover the costs.tom
 

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why should you have to go out of state? most states have secondary diagnostic centers, usually a university hospital. referral to a specialized center is very rare and if that's need I would think your insurance should cover the costs.tom
 

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quote:these days there is really so much information available I'm surprised that your PMD or a localgastro specialist can't take care of your problem.
She appears to have true a motiltiy disorder. Most gastroenterologists cannot handle that.
 

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quote:these days there is really so much information available I'm surprised that your PMD or a localgastro specialist can't take care of your problem.
She appears to have true a motiltiy disorder. Most gastroenterologists cannot handle that.
 

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Discussion Starter · #10 ·
Thanks loon, I will definately take your advise. Unfortunately local social services can't help with out of state issues. However I will try to see what support I can get from churches, Stephen Ministries or perhaps United Way. Up unitl now, they haven't been very helpful, however hopefully with this situation they will. Thanks again.FLUXTHANK YOU SO MUCH ... YOU DO UNDERSTAND. Sometimes I feel there is hardly a person that can understand what some of us go through and that special treatment is required that cannot be obtained from any source. Many of us have this illness with great variations and to different degrees. All the GI's I have been to have resigned from my case because they cannot help.Thanks for understanding Flux. Some people just don't understand that help isn't available for all of us just around the corner and we sometimes have to go to any and all extremes to get help, through no fault of our own.
 

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Discussion Starter · #11 ·
Thanks loon, I will definately take your advise. Unfortunately local social services can't help with out of state issues. However I will try to see what support I can get from churches, Stephen Ministries or perhaps United Way. Up unitl now, they haven't been very helpful, however hopefully with this situation they will. Thanks again.FLUXTHANK YOU SO MUCH ... YOU DO UNDERSTAND. Sometimes I feel there is hardly a person that can understand what some of us go through and that special treatment is required that cannot be obtained from any source. Many of us have this illness with great variations and to different degrees. All the GI's I have been to have resigned from my case because they cannot help.Thanks for understanding Flux. Some people just don't understand that help isn't available for all of us just around the corner and we sometimes have to go to any and all extremes to get help, through no fault of our own.
 

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I hatento disillusion you but I have been to two of the top GI specailaists in motility disorders and they disn't have an answer. more research is definitely needed for us but the research money seems to be going to IBS-D.tom
 

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I hatento disillusion you but I have been to two of the top GI specailaists in motility disorders and they disn't have an answer. more research is definitely needed for us but the research money seems to be going to IBS-D.tom
 

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Discussion Starter · #14 ·
Tom,We are all different. Because you went to two top specialists and it didn't work, doesn't mean that applies to everyone. We are all different. At least you had the opportunity of having tests done ... I have not had that privilege so I don't even know if I do have IBS ... it could be something other than that. They cannot diagnoze IBS until they have ruled out other things.I have been given tons of medication to which I have not responded to at all, because they don't know what they are treating. At least by having tests done I can get to know what is or isn't going on. To have pain like I do to such a degree, 24/7 ... not responding to any form of laxatives etc, is pretty severe and is important to find out what's going on. I have been housebound for 2 years and am deteriorating.Are you trying to tell me to give up and do nothing because all the research is done on D and not C?! Thats pretty discouraging, and somewhat narrow minded. Nobody deserves to live with constant pain, not sleeping, struggling to eat, move etc 24/7 and not at least find out whats going on. I do agree with you that more reseach IS being done on D than C and definately more needs to be done on C. There could however be a lot more going on with people who have SYMPTOMS of C though, especially if there is intense ongoing pain involved which is totally debilitating!
 

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Discussion Starter · #15 ·
Tom,We are all different. Because you went to two top specialists and it didn't work, doesn't mean that applies to everyone. We are all different. At least you had the opportunity of having tests done ... I have not had that privilege so I don't even know if I do have IBS ... it could be something other than that. They cannot diagnoze IBS until they have ruled out other things.I have been given tons of medication to which I have not responded to at all, because they don't know what they are treating. At least by having tests done I can get to know what is or isn't going on. To have pain like I do to such a degree, 24/7 ... not responding to any form of laxatives etc, is pretty severe and is important to find out what's going on. I have been housebound for 2 years and am deteriorating.Are you trying to tell me to give up and do nothing because all the research is done on D and not C?! Thats pretty discouraging, and somewhat narrow minded. Nobody deserves to live with constant pain, not sleeping, struggling to eat, move etc 24/7 and not at least find out whats going on. I do agree with you that more reseach IS being done on D than C and definately more needs to be done on C. There could however be a lot more going on with people who have SYMPTOMS of C though, especially if there is intense ongoing pain involved which is totally debilitating!
 

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What state are you in? Do you have a reputable hospital in your area that you can call for a GI specialist? I saw your post on the Philly NJ thread about Temple.If this is why you wanted to come to Phila...I would suggest Jefferson Hospital instead. They have some of the best GI specialists.1800-JEFF-NOW is the telephone number.
 

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What state are you in? Do you have a reputable hospital in your area that you can call for a GI specialist? I saw your post on the Philly NJ thread about Temple.If this is why you wanted to come to Phila...I would suggest Jefferson Hospital instead. They have some of the best GI specialists.1800-JEFF-NOW is the telephone number.
 
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