Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Bonnie, Did you have other complications besides AIH? So many people who post here also have PBC, PSC, Lupus or something else equally dangerous. I feel grateful when I read about what some other people are going through. I don't know if it's been luck or just the right combination of meds at the right time. My doctors have said that some people respond to the meds and others even go into spontaneous remission, while there are those who nothing helps and a transplant is their only hope. They are telling me that I appear to be one of those whose disease can be contained with meds. I hope they're right. Did you take Prednisone and/or Imuran pre-transplant? When things started going downhill, did it happen all at once or little by little? Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Gayle, Are you also getting supplemental Social Security (can't remember what it's called.) The income limits are so low, it's difficult to become eligible, but also there's Medicaid. I don't know much about either but don't Medicaid standards vary from state to state? It's a good deal if you're eligible. I know that there are different programs that could help, but finding them isn't always easy unless you have some help. My mother was denied Hospice because she didn't have anyone but her 15 year old grandson living with her during the last months of her life. She had Medicare and an HMO and this was the HMOs decision. It never sounded right to me and is not at all what I thought Hospice was all about. They said she had to have someone in the house for ongoing support. She refused to stay with us and I couldn't blame her for not wanting to give up her home. But, it wasn't easy for her. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Hi Gayle, It's rough trying to get by on a limited income. Sometimes it's more than rough, it's almost impossible. I haven't worked since late 1997 and it's the first time we haven't had two incomes for many years. You know how it goes, when one thing goes wrong, other problems follow. Starting in 1995, my husband had a heart attack (not a major one, but it was still an MI). Then, they found a cancer on one of his lungs just about the time I was told I should have a hysterectomy to rule out ovarian cancer. Through it all, we kept on working. But, fate wasn't done with us. In 1996 I had to have a second surgery to repair some damage done the year before and my husband developed a back problem so severe he had to be taken to his doctor's office by ambulance until they could schedule surgery. By then we'd decided we could never survive the Seattle cost of living and were midway through a planned move to Las Vegas. Three weeks before we moved here in mid 1997 he had his surgery and we both immediately found fairly good jobs. Happy ending? No way! Within 3 months after we moved here I was hospitalized and diagnosed with AIH. Last September, Bob had to have a second back surgery and was declared 100% disabled with untreatable disk compression, among other things, and then early this year he had an apparent 2nd. heart attack. The day I got out of the hospital after my AIH diagnosis, our oldest son died from Lou Gehrig's Disease... Sounds like a really bad soap opera, doesn't it? But, Bob happened to have disability insurance on his new job and with a little of this and a little of that, we still have a passable income. Fortunately, his employer has paid 100% of our medical, dental and life insurance since May 1998 and apparently will continue until we don't know when. In fact, we don't even know why they are paying it. The good news is that Bob is considering trying to go back to work at least part-time and if it works, he may even add to his hours. No way I could work unless I could find a job that would allow me to spend take long naps and rest in between. I feel like we're surviving by the skin of our teeth and it could all come crashing down any day. One thing for sure, life doesn't always seem fair, does it? Is there any way to appeal the fact that you've been cut off of Medicaid? I don't know how you can hang in there without some kind of medical resources. Hope your luck changes quickly and things start to go right for you! Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 What does ssdi stand for? I have ssi due to disability. Thought that is what SSDI stood for? J >From: " Lori Cummins " <tlknj@...> >Reply- onelist >< onelist> >Subject: Re: [ ] Hello >Date: Tue, 2 Nov 1999 17:04:45 -0600 >MIME-Version: 1.0 >From errors-165537-7969-shireen42 Tue Nov 02 15:06:49 1999 >Received: from [209.207.164.13] by hotmail.com (3.2) with ESMTP id >MHotMailB9E8B9890015D820F3A3D1CFA40D69100; Tue Nov 02 15:06:49 1999 >Received: (qmail 349 invoked by alias); 2 Nov 1999 23:06:39 -0000 >Received: (qmail 315 invoked from network); 2 Nov 1999 23:06:38 -0000 >Received: from unknown (209.207.164.241) by pop.onelist.com with QMQP; 2 >Nov 1999 23:06:38 -0000 >Received: from unknown (HELO m1.rconnect.com) (209.163.30.3) by >mta2.onelist.com with SMTP; 2 Nov 1999 23:12:48 -0000 >Received: from tknlj (pmfair1-147.rconnect.com [209.163.11.147]) by >m1.rconnect.com (8.9.3/8.9.3) with SMTP id RAA21200 for >< onelist>; Tue, 2 Nov 1999 17:07:04 -0600 (CST) >Message-ID: <001f01bf2586$a8ae3de0$930ba3d1@tknlj> >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 4.72.3110.1 >X-MimeOLE: Produced By Microsoft MimeOLE V4.72.3110.3 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >No, If Don, has regular Social Security Disability, he would not get >medicaid, only if you have SSI do you get medicaid! Lori C. > RE: [ ] Hello > >>Date: Sun, 24 Oct 1999 16:42:02 -0600 > >>MIME-Version: 1.0 > >>From errors-165537-7622-shireen42 Sun Oct 24 14:51:23 1999 > >>Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id > >>MHotMailB9DCCA5B000AD820F3CED1CFA4EB09B70; Sun Oct 24 14:51:23 1999 > >>Received: (qmail 19242 invoked by alias); 24 Oct 1999 21:49:49 -0000 > >>Received: (qmail 19195 invoked from network); 24 Oct 1999 21:49:48 -0000 > >>Received: from unknown (209.207.164.239) by pop4.onelist.com with QMQP; >24 > >>Oct 1999 21:49:48 -0000 > >>Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by > >>mta1.onelist.com with SMTP; 24 Oct 1999 21:49:48 -0000 > >>Received: from donhanson (h-178-243.mn.mediaone.net [209.32.178.243]) by > >>chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id RAA09473 for > >>< onelist>; Sun, 24 Oct 1999 17:46:23 -0400 (EDT) > >>Message-ID: <002101bf1e70$fd38ed00$0100a8c0@...> > >>X-Priority: 3 (Normal) > >>X-MSMail-Priority: Normal > >>X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) > >>X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 > >>In-Reply-<004b01bf1c44$839fb920$a33604d0@dlk3cids> > >>Importance: Normal > >>Mailing-List: list onelist; contact > >> -owneronelist > >>Delivered-mailing list onelist > >>Precedence: bulk > >>List-Unsubscribe: <mailto: -unsubscribeONElist> > >> > >>Hi Debbie, > >> > >>I have pain in my legs, arms and wrists. The pain was controlled pretty > >>well > >>while I was on higher doses of prednisone (20mg and up), but I'm >tapering > >>off of the prednisone now and I'm in a lot of pain. Pain while tapering >is > >>pretty common and I hope it will become tolerable soon! > >> > >>Fatigue is the most debilitating part of the disease for me. Two years >and > >>two appeals later I was approved for SSDI. It took my private carrier >about > >>9 months to approve me. Every three months, my private carrier asks for >an > >>updated doctor report (like I'm going to suddenly be all better!). > >> > >>The new healthcare portablility act prohibits a new carrier from >excluding > >>preexisting conditions under most conditions if you have not let your > >>coverage lapse. I think there is a certain maximum period of time >between > >>dropping one carrier and picking up the next. Check it out carefully >before > >>you do anything. > >> > >>Don > >>AIH Minneapolis > >> > >> > >>------------------------------------------------------------------------ > >>Please support the American Liver Foundation! > >> > >>1.) To subscribe send e-mail to -subscribeonelist > >>2.) To UNsubscribe send to -unsubscribeonelist > >>3.) Digest e-mail format send to -digestonelist > >>4.) Normal e-mail format send to -normalonelist > >><< text3.html >> > > > >>Please support the American Liver Foundation! > > > >1.) To subscribe send e-mail to -subscribeonelist > >2.) To UNsubscribe send to -unsubscribeonelist > >3.) Digest e-mail format send to -digestonelist > >4.) Normal e-mail format send to -normalonelist > > > > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Hi Don, Thanks for the warning, I am new to learning the life of computers and I keep forgetting that we no longer are alone. On my disability I can earn so much beyond my check. I can " t remember the max. However because of my restrictions I won " t have to worry about how much I do make, cause I don " t have the energy anyway. Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 >I supposedly get the max. allowed for disability. I recieve $787 per month Hi Gayle, The amount of SSDI is dependent on the amount you've paid in during your work history. I'm getting $1252/month, which I think is the current max. It's been 2 years since I was disabled and I now qualify for Medicare. If yours is the only income, you probably qualify for SSI, which varies from state to state, that would also qualify you for Medicaid. Don AIH Minneapolis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 No, If Don, has regular Social Security Disability, he would not get medicaid, only if you have SSI do you get medicaid! Lori C. RE: [ ] Hello >>Date: Sun, 24 Oct 1999 16:42:02 -0600 >>MIME-Version: 1.0 >>From errors-165537-7622-shireen42 Sun Oct 24 14:51:23 1999 >>Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id >>MHotMailB9DCCA5B000AD820F3CED1CFA4EB09B70; Sun Oct 24 14:51:23 1999 >>Received: (qmail 19242 invoked by alias); 24 Oct 1999 21:49:49 -0000 >>Received: (qmail 19195 invoked from network); 24 Oct 1999 21:49:48 -0000 >>Received: from unknown (209.207.164.239) by pop4.onelist.com with QMQP; 24 >>Oct 1999 21:49:48 -0000 >>Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by >>mta1.onelist.com with SMTP; 24 Oct 1999 21:49:48 -0000 >>Received: from donhanson (h-178-243.mn.mediaone.net [209.32.178.243]) by >>chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id RAA09473 for >>< onelist>; Sun, 24 Oct 1999 17:46:23 -0400 (EDT) >>Message-ID: <002101bf1e70$fd38ed00$0100a8c0@...> >>X-Priority: 3 (Normal) >>X-MSMail-Priority: Normal >>X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) >>X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 >>In-Reply-<004b01bf1c44$839fb920$a33604d0@dlk3cids> >>Importance: Normal >>Mailing-List: list onelist; contact >> -owneronelist >>Delivered-mailing list onelist >>Precedence: bulk >>List-Unsubscribe: <mailto: -unsubscribeONElist> >> >>Hi Debbie, >> >>I have pain in my legs, arms and wrists. The pain was controlled pretty >>well >>while I was on higher doses of prednisone (20mg and up), but I'm tapering >>off of the prednisone now and I'm in a lot of pain. Pain while tapering is >>pretty common and I hope it will become tolerable soon! >> >>Fatigue is the most debilitating part of the disease for me. Two years and >>two appeals later I was approved for SSDI. It took my private carrier about >>9 months to approve me. Every three months, my private carrier asks for an >>updated doctor report (like I'm going to suddenly be all better!). >> >>The new healthcare portablility act prohibits a new carrier from excluding >>preexisting conditions under most conditions if you have not let your >>coverage lapse. I think there is a certain maximum period of time between >>dropping one carrier and picking up the next. Check it out carefully before >>you do anything. >> >>Don >>AIH Minneapolis >> >> >>------------------------------------------------------------------------ >>Please support the American Liver Foundation! >> >>1.) To subscribe send e-mail to -subscribeonelist >>2.) To UNsubscribe send to -unsubscribeonelist >>3.) Digest e-mail format send to -digestonelist >>4.) Normal e-mail format send to -normalonelist >><< text3.html >> > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Hi , ssdi is disability. ssi is a supplimental program. I recieved ssi while waiting for ssdi ssi you can get rather quickly where ssdi has a waiting period of six months before you get a check. ssdi is more of a permanate program, depending on your condition. Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 My SSI is permanent due to my disability, that is why it is so confusing. SSI=supplemental security income. It took me at least a year and a half to get a check. J >From: GALYE@... >Reply- onelist > onelist >Subject: Re: [ ] Hello >Date: Wed, 3 Nov 1999 00:12:51 EST >MIME-Version: 1.0 >From errors-165537-7990-shireen42=hotmail.comonelist Tue Nov 2 >21:13:03 1999 >Received: (qmail 26449 invoked by alias); 3 Nov 1999 05:12:59 -0000 >Received: (qmail 26436 invoked from network); 3 Nov 1999 05:12:56 -0000 >Received: from unknown (209.207.164.241) by pop2.onelist.com with QMQP; 3 >Nov 1999 05:12:56 -0000 >Received: from unknown (HELO imo17.mx.aol.com) (198.81.17.7) by >mta2.onelist.com with SMTP; 3 Nov 1999 05:18:38 -0000 >Received: from GALYE@... by imo17.mx.aol.com (mail_out_v23.6.) id >hXBQa17102 (4413) for < onelist>; Wed, 3 Nov 1999 >00:12:51 -0500 (EST) >Message-ID: <0.4e8ec48c.25511e53@...> >X-Mailer: Windows AOL sub 41 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >Hi , >ssdi is disability. ssi is a supplimental program. I recieved ssi while >waiting for ssdi ssi you can get rather quickly where ssdi has a waiting >period of six months before you get a check. ssdi is more of a permanate >program, depending on your condition. >Gayle > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 1999 Report Share Posted November 3, 1999 Gayle, There might be some advocacy agency that can help you get improved benefits. Trying to live on almost nothing certainly can't be doing anything to relieve your medical conditions. I don't know if it does any good to see an attorney but have you contacted one of those who say they can help you get disability benefits, or do they only mean Workmen's Comp, do you know? I'd certainly file an appeal or make an appointment if possible and talk to someone, telling them that you aren't getting enough help to survive. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 1999 Report Share Posted November 3, 1999 Hi Geri, At this time I am fileing for an extension for medicaid, I have been waiting to hear something for 2 months. When I was interviewed they told me I would have an uphill battle. Because I wasn " t sick enough. How sick enough is sick? This extension was also routed through what they call Home Medicare, and the Doctors decided I didn " t need this service because to them I can do all my responsabilities myself, in other words the Doctors really are not understanding of what this company does. And the Doctors are the ones that can make the difference to continue medicaid. I just can not afford to get a lawyer and even make payments, when food buying is last on my list. The Doctors want me to eat healthy yeah right. I called my social worker yesterday to find out about takeing classes and she couldn " t give me any answers. I am petrified that my disability checks time will run out before I can get help and they will decide I can go back to work and I still won " t be well enough to do the physical work I did go to school for. It seems that when people are sick like this group that they would make it a little easier to get through this paperwork. Every time I have to think about this side of it all I can do is cry. Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 1999 Report Share Posted November 3, 1999 SSDI stands for Regular Social Security Disability, and SSI stands for Supplemental Security Income, that is where you get the medicaid when YOU have SSI, that is what I have. Lori C. RE: [ ] Hello >> >>Date: Sun, 24 Oct 1999 16:42:02 -0600 >> >>MIME-Version: 1.0 >> >>From errors-165537-7622-shireen42 Sun Oct 24 14:51:23 1999 >> >>Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id >> >>MHotMailB9DCCA5B000AD820F3CED1CFA4EB09B70; Sun Oct 24 14:51:23 1999 >> >>Received: (qmail 19242 invoked by alias); 24 Oct 1999 21:49:49 -0000 >> >>Received: (qmail 19195 invoked from network); 24 Oct 1999 21:49:48 -0000 >> >>Received: from unknown (209.207.164.239) by pop4.onelist.com with QMQP; >>24 >> >>Oct 1999 21:49:48 -0000 >> >>Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by >> >>mta1.onelist.com with SMTP; 24 Oct 1999 21:49:48 -0000 >> >>Received: from donhanson (h-178-243.mn.mediaone.net [209.32.178.243]) by >> >>chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id RAA09473 for >> >>< onelist>; Sun, 24 Oct 1999 17:46:23 -0400 (EDT) >> >>Message-ID: <002101bf1e70$fd38ed00$0100a8c0@...> >> >>X-Priority: 3 (Normal) >> >>X-MSMail-Priority: Normal >> >>X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) >> >>X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 >> >>In-Reply-<004b01bf1c44$839fb920$a33604d0@dlk3cids> >> >>Importance: Normal >> >>Mailing-List: list onelist; contact >> >> -owneronelist >> >>Delivered-mailing list onelist >> >>Precedence: bulk >> >>List-Unsubscribe: <mailto: -unsubscribeONElist> >> >> >> >>Hi Debbie, >> >> >> >>I have pain in my legs, arms and wrists. The pain was controlled pretty >> >>well >> >>while I was on higher doses of prednisone (20mg and up), but I'm >>tapering >> >>off of the prednisone now and I'm in a lot of pain. Pain while tapering >>is >> >>pretty common and I hope it will become tolerable soon! >> >> >> >>Fatigue is the most debilitating part of the disease for me. Two years >>and >> >>two appeals later I was approved for SSDI. It took my private carrier >>about >> >>9 months to approve me. Every three months, my private carrier asks for >>an >> >>updated doctor report (like I'm going to suddenly be all better!). >> >> >> >>The new healthcare portablility act prohibits a new carrier from >>excluding >> >>preexisting conditions under most conditions if you have not let your >> >>coverage lapse. I think there is a certain maximum period of time >>between >> >>dropping one carrier and picking up the next. Check it out carefully >>before >> >>you do anything. >> >> >> >>Don >> >>AIH Minneapolis >> >> >> >> >> >>------------------------------------------------------------------------ >> >>Please support the American Liver Foundation! >> >> >> >>1.) To subscribe send e-mail to -subscribeonelist >> >>2.) To UNsubscribe send to -unsubscribeonelist >> >>3.) Digest e-mail format send to -digestonelist >> >>4.) Normal e-mail format send to -normalonelist >> >><< text3.html >> >> > >> >>Please support the American Liver Foundation! >> > >> >1.) To subscribe send e-mail to -subscribeonelist >> >2.) To UNsubscribe send to -unsubscribeonelist >> >3.) Digest e-mail format send to -digestonelist >> >4.) Normal e-mail format send to -normalonelist >> > >> >> >>------------------------------------------------------------------------ >>Please support the American Liver Foundation! >> >>1.) To subscribe send e-mail to -subscribeonelist >>2.) To UNsubscribe send to -unsubscribeonelist >>3.) Digest e-mail format send to -digestonelist >>4.) Normal e-mail format send to -normalonelist >><< text3.html >> > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 1999 Report Share Posted November 3, 1999 What is the I? Does it mean social security disability income? J >From: " Lori Cummins " <tlknj@...> >Reply- onelist >< onelist> >Subject: Re: [ ] Hello >Date: Wed, 3 Nov 1999 07:57:04 -0600 >MIME-Version: 1.0 >From errors-165537-8006-shireen42 Wed Nov 03 06:00:45 1999 >Received: from [209.207.164.237] by hotmail.com (3.2) with ESMTP id >MHotMailB9E98B0C002BD820F3CCD1CFA4ED05020; Wed Nov 03 06:00:45 1999 >Received: (qmail 23160 invoked by alias); 3 Nov 1999 13:59:31 -0000 >Received: (qmail 23072 invoked from network); 3 Nov 1999 13:59:29 -0000 >Received: from unknown (209.207.164.239) by pop4.onelist.com with QMQP; 3 >Nov 1999 13:59:29 -0000 >Received: from unknown (HELO m1.rconnect.com) (209.163.30.3) by >mta1.onelist.com with SMTP; 3 Nov 1999 13:59:28 -0000 >Received: from tknlj (pmfair1-204.rconnect.com [209.163.11.204]) by >m1.rconnect.com (8.9.3/8.9.3) with SMTP id HAA14541 for >< onelist>; Wed, 3 Nov 1999 07:59:27 -0600 (CST) >Message-ID: <015501bf2603$50d72e60$cc0ba3d1@tknlj> >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 4.72.3110.1 >X-MimeOLE: Produced By Microsoft MimeOLE V4.72.3110.3 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >SSDI stands for Regular Social Security Disability, and SSI stands for >Supplemental Security Income, that is where you get the medicaid when YOU >have SSI, that is what I have. Lori C. > RE: [ ] Hello > >> >>Date: Sun, 24 Oct 1999 16:42:02 -0600 > >> >>MIME-Version: 1.0 > >> >>From errors-165537-7622-shireen42 Sun Oct 24 14:51:23 1999 > >> >>Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id > >> >>MHotMailB9DCCA5B000AD820F3CED1CFA4EB09B70; Sun Oct 24 14:51:23 1999 > >> >>Received: (qmail 19242 invoked by alias); 24 Oct 1999 21:49:49 -0000 > >> >>Received: (qmail 19195 invoked from network); 24 Oct 1999 >21:49:48 -0000 > >> >>Received: from unknown (209.207.164.239) by pop4.onelist.com with >QMQP; > >>24 > >> >>Oct 1999 21:49:48 -0000 > >> >>Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by > >> >>mta1.onelist.com with SMTP; 24 Oct 1999 21:49:48 -0000 > >> >>Received: from donhanson (h-178-243.mn.mediaone.net [209.32.178.243]) >by > >> >>chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id RAA09473 for > >> >>< onelist>; Sun, 24 Oct 1999 17:46:23 -0400 (EDT) > >> >>Message-ID: <002101bf1e70$fd38ed00$0100a8c0@...> > >> >>X-Priority: 3 (Normal) > >> >>X-MSMail-Priority: Normal > >> >>X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) > >> >>X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 > >> >>In-Reply-<004b01bf1c44$839fb920$a33604d0@dlk3cids> > >> >>Importance: Normal > >> >>Mailing-List: list onelist; contact > >> >> -owneronelist > >> >>Delivered-mailing list onelist > >> >>Precedence: bulk > >> >>List-Unsubscribe: <mailto: -unsubscribeONElist> > >> >> > >> >>Hi Debbie, > >> >> > >> >>I have pain in my legs, arms and wrists. The pain was controlled >pretty > >> >>well > >> >>while I was on higher doses of prednisone (20mg and up), but I'm > >>tapering > >> >>off of the prednisone now and I'm in a lot of pain. Pain while >tapering > >>is > >> >>pretty common and I hope it will become tolerable soon! > >> >> > >> >>Fatigue is the most debilitating part of the disease for me. Two >years > >>and > >> >>two appeals later I was approved for SSDI. It took my private carrier > >>about > >> >>9 months to approve me. Every three months, my private carrier asks >for > >>an > >> >>updated doctor report (like I'm going to suddenly be all better!). > >> >> > >> >>The new healthcare portablility act prohibits a new carrier from > >>excluding > >> >>preexisting conditions under most conditions if you have not let your > >> >>coverage lapse. I think there is a certain maximum period of time > >>between > >> >>dropping one carrier and picking up the next. Check it out carefully > >>before > >> >>you do anything. > >> >> > >> >>Don > >> >>AIH Minneapolis > >> >> > >> >> > >> > >>------------------------------------------------------------------------ > >> >>Please support the American Liver Foundation! > >> >> > >> >>1.) To subscribe send e-mail to -subscribeonelist > >> >>2.) To UNsubscribe send to -unsubscribeonelist > >> >>3.) Digest e-mail format send to -digestonelist > >> >>4.) Normal e-mail format send to -normalonelist > >> >><< text3.html >> > >> > > >> >>Please support the American Liver Foundation! > >> > > >> >1.) To subscribe send e-mail to -subscribeonelist > >> >2.) To UNsubscribe send to -unsubscribeonelist > >> >3.) Digest e-mail format send to -digestonelist > >> >4.) Normal e-mail format send to -normalonelist > >> > > >> > >> > >>------------------------------------------------------------------------ > >>Please support the American Liver Foundation! > >> > >>1.) To subscribe send e-mail to -subscribeonelist > >>2.) To UNsubscribe send to -unsubscribeonelist > >>3.) Digest e-mail format send to -digestonelist > >>4.) Normal e-mail format send to -normalonelist > >><< text3.html >> > > > >>Please support the American Liver Foundation! > > > >1.) To subscribe send e-mail to -subscribeonelist > >2.) To UNsubscribe send to -unsubscribeonelist > >3.) Digest e-mail format send to -digestonelist > >4.) Normal e-mail format send to -normalonelist > > > > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 1999 Report Share Posted November 4, 1999 SSDI = Social Security Disibility Income Don RE: [ ] Hello > >> >>Date: Sun, 24 Oct 1999 16:42:02 -0600 > >> >>MIME-Version: 1.0 > >> >>From errors-165537-7622-shireen42 Sun Oct 24 14:51:23 1999 > >> >>Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id > >> >>MHotMailB9DCCA5B000AD820F3CED1CFA4EB09B70; Sun Oct 24 14:51:23 1999 > >> >>Received: (qmail 19242 invoked by alias); 24 Oct 1999 21:49:49 -0000 > >> >>Received: (qmail 19195 invoked from network); 24 Oct 1999 >21:49:48 -0000 > >> >>Received: from unknown (209.207.164.239) by pop4.onelist.com with >QMQP; > >>24 > >> >>Oct 1999 21:49:48 -0000 > >> >>Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by > >> >>mta1.onelist.com with SMTP; 24 Oct 1999 21:49:48 -0000 > >> >>Received: from donhanson (h-178-243.mn.mediaone.net [209.32.178.243]) >by > >> >>chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id RAA09473 for > >> >>< onelist>; Sun, 24 Oct 1999 17:46:23 -0400 (EDT) > >> >>Message-ID: <002101bf1e70$fd38ed00$0100a8c0@...> > >> >>X-Priority: 3 (Normal) > >> >>X-MSMail-Priority: Normal > >> >>X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) > >> >>X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 > >> >>In-Reply-<004b01bf1c44$839fb920$a33604d0@dlk3cids> > >> >>Importance: Normal > >> >>Mailing-List: list onelist; contact > >> >> -owneronelist > >> >>Delivered-mailing list onelist > >> >>Precedence: bulk > >> >>List-Unsubscribe: <mailto: -unsubscribeONElist> > >> >> > >> >>Hi Debbie, > >> >> > >> >>I have pain in my legs, arms and wrists. The pain was controlled >pretty > >> >>well > >> >>while I was on higher doses of prednisone (20mg and up), but I'm > >>tapering > >> >>off of the prednisone now and I'm in a lot of pain. Pain while >tapering > >>is > >> >>pretty common and I hope it will become tolerable soon! > >> >> > >> >>Fatigue is the most debilitating part of the disease for me. Two >years > >>and > >> >>two appeals later I was approved for SSDI. It took my private carrier > >>about > >> >>9 months to approve me. Every three months, my private carrier asks >for > >>an > >> >>updated doctor report (like I'm going to suddenly be all better!). > >> >> > >> >>The new healthcare portablility act prohibits a new carrier from > >>excluding > >> >>preexisting conditions under most conditions if you have not let your > >> >>coverage lapse. I think there is a certain maximum period of time > >>between > >> >>dropping one carrier and picking up the next. Check it out carefully > >>before > >> >>you do anything. > >> >> > >> >>Don > >> >>AIH Minneapolis > >> >> > >> >> > >> > >>------------------------------------------------------------------------ > >> >>Please support the American Liver Foundation! > >> >> > >> >>1.) To subscribe send e-mail to -subscribeonelist > >> >>2.) To UNsubscribe send to -unsubscribeonelist > >> >>3.) Digest e-mail format send to -digestonelist > >> >>4.) Normal e-mail format send to -normalonelist > >> >><< text3.html >> > >> > > >> >>Please support the American Liver Foundation! > >> > > >> >1.) To subscribe send e-mail to -subscribeonelist > >> >2.) To UNsubscribe send to -unsubscribeonelist > >> >3.) Digest e-mail format send to -digestonelist > >> >4.) Normal e-mail format send to -normalonelist > >> > > >> > >> > >>------------------------------------------------------------------------ > >>Please support the American Liver Foundation! > >> > >>1.) To subscribe send e-mail to -subscribeonelist > >>2.) To UNsubscribe send to -unsubscribeonelist > >>3.) Digest e-mail format send to -digestonelist > >>4.) Normal e-mail format send to -normalonelist > >><< text3.html >> > > > >>Please support the American Liver Foundation! > > > >1.) To subscribe send e-mail to -subscribeonelist > >2.) To UNsubscribe send to -unsubscribeonelist > >3.) Digest e-mail format send to -digestonelist > >4.) Normal e-mail format send to -normalonelist > > > > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Please support the American Liver Foundation! 1.) To subscribe send e-mail to -subscribeonelist 2.) To UNsubscribe send to -unsubscribeonelist 3.) Digest e-mail format send to -digestonelist 4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 1999 Report Share Posted November 4, 1999 Hi Barbara, Sorry I did not answer you right awasy on this, I have been wading through over 300 messages that have piled up since last Friday afternoon, my harddrive took a crap and I had to have 3 parts replaced and got it back on Tuesday afternoon. Anyway, I'm not sure how long they continue the SSI, I guess as long as you are disabled and are within the income limits. SSI does not pay the meds and hospital bills, and then you get a medical card from your County Human Services and they pay for almost everything, all of my meds so far have been covered and that is pre- and post transplant and I was diagnosed in July 1996 and have been on meds ever since. It is much different than SSDI. Hope this helps. It has been a real blessing, felt funny at first having to ask for the help, but how could I have paid $350,000.00 in bills?? My husband is low paid and gets no insurance through his work. Take Care Lori C. AIH transplanted 3~11~97 [ ] HELLO >From: barbara ann <barbara99ann@...> > >Lori, >These are stupid questions, I don't know very much >about this. >Can you stay on SSI indefintely? Does SSI pay for >meds? If so, is there a cap or time limit that SSI >will pay for meds? >All I know, (very little) is that SSDI will only pay >for meds for 3 years post tx. >Thanks, >Barbara Ann >AIH Transplant Recipient > ><SSDI stands for Regular Social Security Disability, >and SSI stands for >Supplemental Security Income, that is where you get >the medicaid when >YOU >have SSI, that is what I have. Lori C.> > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Hi Lori, I feel better knowing there are plans in place which will cover meds, etc, after transplant. Luckily, I had insurance at the time of my transplant which paid for everything for the first year. Now I have minimal copays which don't amount to anything at all and a mail away prescription plan with Merck. My meds are $22.00 every three months (not bad). If I get a flu or something which requires immediate medication, I go to the pharmacy and pay $5 or $10 dollars. After my transplant, I asked the surgeons what would happen if I lost my insurance completely. They told me that they would never 'throw me away', and I could be assured that I'd always receive any treatments or meds. I felt so much better knowing the transplant center is committed to us in case the bottom falls out. I'm sure Mayo is exactly the same. Barbara Ann AIH Transplant Recipient P.S. Lori, I've sent my pic to you twice, I don't know if you received it either time. Let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Yes, I did receive it, I think you are a very good looking woman. We look good for having gone through everything we have!!! Take care!! Lori Cummins [ ] re:Hello >From: barbara ann <barbara99ann@...> > >Hi Lori, >I feel better knowing there are plans in place which >will cover meds, etc, after transplant. Luckily, I >had insurance at the time of my transplant which paid >for everything for the first year. Now I have minimal >copays which don't amount to anything at all and a >mail away prescription plan with Merck. My meds are >$22.00 every three months (not bad). If I get a flu >or something which requires immediate medication, I go >to the pharmacy and pay $5 or $10 dollars. >After my transplant, I asked the surgeons what would >happen if I lost my insurance completely. They told >me that they would never 'throw me away', and I could >be assured that I'd always receive any treatments or >meds. I felt so much better knowing the transplant >center is committed to us in case the bottom falls >out. I'm sure Mayo is exactly the same. >Barbara Ann >AIH Transplant Recipient >P.S. Lori, I've sent my pic to you twice, I don't know >if you received it either time. Let me know. > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Gayle, Check with your disability insurance company. Many and maybe most of them have a provision for retraining or rehab. They will pay for your schooling. On the Medicaid issue, contact them and tell them that you want to file a formal appeal and ask for a hearing. Then, get copies of all of your labs and records from your doctors and anywhere else you've been treated or tested. Most or all of those files should be free, especially if they're recent. Go to the hearing prepared to show them why you need help. If you need copies of medical data explaining the scope of AIH, you can get them from Internet or I can send them to you as either attachments or copied into an e-mail - your choice. I probably have enough to convince the most severe skeptic. Some lawyers will handle claims on a contingency basis. In other words, they only take a percentage of an award. That may not apply in your case, however, you should be eligible for Legal Aid. My son has been going through similar hassles to yours and only since he's become more proactive has he been getting results. You like to believe that they'll do the " right " thing but that's not always the way things work. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 I'm confused. Tell its due to my poor memory due to Lyme and that I have written and heard from too many 's lately. If it has to do with all the requests to remove names from emails, then I would like to talk to you more. Can you ask to be more specific, I think I know, but not sure. Thanks Vicki [Lyme-aid] HELLO >From: lc lott <lclott@...> > > >HELLO- > I DON'T KNOW IF YOU KNOW WHO I AM BUT I'M LISA'S >DAUGHTER. SHE WANTED ME TO TELL YOU THAT I'M THE ONE >WHO SENT ALL THE LETTERS OUT. I'M THE ONE WHO TYPED IT >UP, AND SENT IT OUT. SHE WANTED ME TO TELL YOU THAT >SHE COULDN'T. I DON'T KNOW WHY SHE WANTED ME TO TELL >YOU, BUT SHE DID, SO I DID. I HAVE TO GO NOW BUT IF >YOU WANT TO WRITE TO ME, MY E-MAIL IS >buffy_97_99@... > > -ANGELA LOTT- >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 Hi Ang, Most of us know you from your Mom, and I am so impressed that you were feeling well enough to get those letters out. I know that you were having a difficult time for awhile with your Lyme disease, I also know you hate needles! I do too. You have really helped our cause typing and mailing out the letters about Lyme disease. I hope that you included your story in your letters, as well as your Mom's. The worst thing about Lyme disease is that young people like you suffer from it....it is not fair! I hope we hear more from you on our list. I am sorry that Mom is not doing well, tell her we miss her. Hugs, Marta, NJ - >From: lc lott <lclott@...> > > >HELLO- > I DON'T KNOW IF YOU KNOW WHO I AM BUT I'M LISA'S >DAUGHTER. SHE WANTED ME TO TELL YOU THAT I'M THE ONE >WHO SENT ALL THE LETTERS OUT. I'M THE ONE WHO TYPED IT >UP, AND SENT IT OUT. SHE WANTED ME TO TELL YOU THAT >SHE COULDN'T. I DON'T KNOW WHY SHE WANTED ME TO TELL >YOU, BUT SHE DID, SO I DID. I HAVE TO GO NOW BUT IF >YOU WANT TO WRITE TO ME, MY E-MAIL IS >buffy_97_99@... > > -ANGELA LOTT- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 1999 Report Share Posted November 17, 1999 Hi Debbie, You can create your own chat room, really easy. If you build it they will come. Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 1999 Report Share Posted November 22, 1999 Hi All, Been a while since I have talked to you. Trying to keep up with this mail. Happened on a a new site today, I never go to any sites, too much mail. allhealth.com At least I think that is what it said. Brain been a bear lately. I want to wish everyone a great Thanksgiving and thanks to all of you for all your work on this list. I do no know what I would do without all of you. I know I haven't written much, but I try to read it all. Super upset about Dr. Orens. Will it ever end. Peace and help to all of you, Connie , MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 1999 Report Share Posted November 23, 1999 Hi Connie, I was just thinking about you yesterday and wondering what was up with you, I know you are having a rough time trying to work and keep up with Lyme issues, but you are sorely missed. Thanks for the web site, I will check it out, take care and enjoy your holiday and time off from school. Much love, Marta NJ -- >From: Cslyme@... > >Hi All, >Been a while since I have talked to you. Trying to keep up with this mail. >Happened on a a new site today, I never go to any sites, too much mail. > >allhealth.com At least I think that is what it said. Brain been a bear >lately. > >I want to wish everyone a great Thanksgiving and thanks to all of you for all >your work on this list. > >I do no know what I would do without all of you. I know I haven't written >much, but I try to read it all. > >Super upset about Dr. Orens. Will it ever end. > >Peace and help to all of you, > >Connie , MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 1999 Report Share Posted November 28, 1999 Hi , Sounds like this move will definitely be a good one. I'm sure your family is very excited to know that you'll be a little closer I'm glad that you're going to give it a little more time, with the Arava. It does take a while to show effect, doesn't it? Have you had any bad side effects to speak of? Or just not enough good ones, yet? Are you taking anything else along with it, at this time? Are you still taking just 20mgs a day? Were you on Methotrexate before you went on Arava? I know, too many questions. And you may not even be online before the move. Well, I'll wait and see. And I'll ask again later if there's no reply soon. Hope all is well! ~Georgina > wrote: > > Hello Everyone > Well so far my arthritis hasn't been good to me lately. I am still > waiting for Arava to work to it's fullest. I have been on it for 3 > months now with little to no luck. But I have decided I will give it > a full six months before I ask to be on something else. > > Other then that. I will be moving again on Dec. 1 yeah I know I move > to much. I am moving back to Montana where I can be closer to my > family. For the first couple of months I will be in Kalispell but > then I will be moving to Missoula where I plan on staying for a > awhile. At least a couple of years or more. I will be right back > online once I get to Kalispell, so I shouldn't miss anything. > > well I must be going for now. Take care everyone > > My webpages: > http://fadedjeans.com/jraworld > http://www.geocities.com/acnelson24 > Reach me by ICQ. ICQ# 34033888 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 1999 Report Share Posted November 28, 1999 Georgina >It does take a while to show effect, doesn't it?> It's suppose to start working in 6-8 weeks >Have you had any bad side effects to speak of? Or just not enough good ones, yet?> No bad side effects. I just feel that it isn't working to it full. I except more out of it then what I have gotten. My doctor says that it has work well with alot of people but I don't see that its working all that well for me. >Are you taking anything else along with it, at this time? Are you still taking just 20mgs a day? Were you on Methotrexate before you went on Arava?> No I am only taking the Arava. Yeah I am still on 20mgs a day. I most likly will be going up to 30mgs and that is the max dosage that you can go on this one. So if that don't work then I will be going either to Enbrel or the new one that was just approved that is like Enbrel. I was Imuran before I was on Arava. I took Methotrexate many many years ago. I was one of the first kids on MTX. I worked there for awhile but then it didn't help anymore. My webpages: http://fadedjeans.com/jraworld http://www.geocities.com/acnelson24 Reach me by ICQ. ICQ# 34033888 Re: [ ] HELLO Hi , Sounds like this move will definitely be a good one. I'm sure your family is very excited to know that you'll be a little closer I'm glad that you're going to give it a little more time, with the Arava. It does take a while to show effect, doesn't it? Have you had any bad side effects to speak of? Or just not enough good ones, yet? Are you taking anything else along with it, at this time? Are you still taking just 20mgs a day? Were you on Methotrexate before you went on Arava? I know, too many questions. And you may not even be online before the move. Well, I'll wait and see. And I'll ask again later if there's no reply soon. Hope all is well! ~Georgina > wrote: > > Hello Everyone > Well so far my arthritis hasn't been good to me lately. I am still > waiting for Arava to work to it's fullest. I have been on it for 3 > months now with little to no luck. But I have decided I will give it > a full six months before I ask to be on something else. > > Other then that. I will be moving again on Dec. 1 yeah I know I move > to much. I am moving back to Montana where I can be closer to my > family. For the first couple of months I will be in Kalispell but > then I will be moving to Missoula where I plan on staying for a > awhile. At least a couple of years or more. I will be right back > online once I get to Kalispell, so I shouldn't miss anything. > > well I must be going for now. Take care everyone > > My webpages: > http://fadedjeans.com/jraworld > http://www.geocities.com/acnelson24 > Reach me by ICQ. ICQ# 34033888 ------------------------------------------------------------------------------ Click Here ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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