Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 , We have all had days that we feel God has forgotten us but He hasn't. You are not alone in this - we have all been there. We all have to get our heads on straight at times and members of this group will help you do that. Doctor's don't usually bring up using a cane - I think they are afraid that patient's will feel pushed to do something they are not ready to do. You need to think about it and you need to be ready. Believe me, you will be more comfortable and you will have more independence - it makes such a difference but you do have to accept it in your head and I understand that. When I first started using a cane, I had needed one for a year. Now I wish I had just gotten a year sooner rather than suffering through the additional pain. You are an inspiration to others on this list and we want you to feel better as much as you want it. Pat At 11:05 AM 03/20/2000 -0500, you wrote: >From: " Valued Compaq Customer " <ruf-caimi@...> > >Carolyn, > I could never be an inspiration to anyone. I hate what has > happened to >me. At night when I am alone, it is so hard. Sometimes I think God has >forgotten I am here. I have not answered Beka yet, because I am trying not >to think about the cane. I am going to answer her note later today but I >need to think about all this. The doctor didn't mention a cane or >anything, he just wanted the MRI. I called the hospital today and ask if >they could push the test up. It is scheduled for April 6, they are trying >to fit me in. I had to come home today, I knew I just couldn't sit in the >car and wait the 4 hours for my daughter to get out of school. So I am >going to rest a little after aquatics I am tired and maybe try to clean >something. Looking around it certainly needs it badly. > Thank You so much for your kind words. My hip pain does hurt my > lower >back, but most of it I can feel right in the hip joint. You are right I >think this is causing my balance to be off, I just need to think about all >this. Get my head straight I guess. > You have made ME feel better, thank you. > > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >1/936/4/_/478567/_/953568256/ >------------------------------------------------------------------------ > >URL to change your membership options: /group/ >RA-support website: http://www.rasupport.webprovider.com/ >Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 , has adjusted quite well to sleeping and to her carseat with her helmet. I think it is harder on me than on her. Kathy mom to l lamdoid cranio CVR 1/18/01 banded 2/26/01 > I just got finished looking through all the pictures on file and > wanted to say thank you to all the parents who submitted the casting > pictures. My daughter will have to have a helmet after her surgery > for CS and now I know what to expect the day we go in to have her > casted. It looks like its going to be a tough day for everyone. But > that is probably a month away. Does anyone know if the boppy pillow > will make sleeping and riding in the carseat more comfortable when my > daughter finally has her helmet? I will make sure to post photos of > her and the casting process for future help when we are all done with > this. > Once again thank you! > {{Hugs}} and prayers, > (mom of Leigha--bicoronal CS--surgery3/29 helmet after for > about 3 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 , Welcome to the group! When is your daughter scheduled for surgery? I want to make sure to include her and your family on my prayer list! As far as comfort sleeping and riding, we have never had any issues with that. She sleeps with no trouble at all and she does just fine in her carseat. The helmet doesn't seem to cause her any discomfort and she seems to actually like it most of the time! Hope this helps! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Hi PJ, Gosh, I was hoping that what you were dealing with was only rupture of the implants! When I read that you were also having the fibromyalgia, acute arthritis, rheumatoid arthritis, etc., my heart sank. This is another nasty road, but a much more serious one. Thank God you didn't have cancer in the first place anyway. But now, knowing that you are dealing with all these other health issues, it is imperative that you remove the implants for good. This really pisses me off that doctors WON'T ACKNOWLEDGE these illnesses associated with our implants! I am really ticked about this! I mean, I really don't get it, when the manufacturer's themselves put on the consent form and product insert that the possibility of these diseases exist, why doctors then say the implants don't cause our illness. The manufacturer's are saying one thing and then the doctors are denying it altogether. I would think that after all you have been through that some compassionate doctor would have had a light bulb go off in his head and realize that maybe these things are just not a good option for you, that these just might be more trouble than they are worth. To suggest another set of implants sounds ludicrous. Yes, I am mad about this issue, class action lawsuit or not. I can't be in it, so I have absolutely NO legal recourse whatsoever. That made me mad at first, but I realized that maybe my life would have been way too complicated with a lawsuit. It is an injustice that I will have to wait for God to rectify. I do believe that you are eligible for some kind of legal assistance, but since I am not involved in the class action, I cannot say for sure. Some of these other ladies on the group will know much more than I do about it. Thanks again for sharing your story with us. Yes, I think we should all go on talk shows and tell our stories! The world needs to know what horrors are being experienced, and how insulting the medical community has been to us. Love, Patty ----- Original Message ----- From: ronpatgordi4 Sent: Wednesday, September 11, 2002 10:20 AM Subject: Thank You I feel welcome already. To answer Patty, my right implant shows signs of leakage as it is getting smaller. It is also very sore.My other 2 sets of saline implants also ruptured. I heard on TV one time, Tom Brokaw I think, say if you had implants after masectomies, your chances of ending up in the hospital again were very good!! That was due to muscle spasms, I think. I am going to a new Dr. for me because we moved from Indiana to Tennessee. I would love to be able to go to the one in Indiana, (a female), but 480 miles away. I liked the Dr. in Huntsville, AL I was sent to. He understood everything and was really against me having any more implants but was leaving the decision up to me. I know what I am going to do, just a matter of when. I don't know if the Ins. will pay. That is alot of the problem. Waiting to see if it will.I have been going thru this since 1986. I have seen every kind of Dr. I thought could help me for all of the pain I am in. Fibromyalgia, acute arthritis, rheumatiod arthritis, etc., been told I have it all!I was told I had carpel tunnel. Had surgery on both hands, no help. I was a bank teller for 15 years but had to quit. I am glad I found this sight. I need help learning my way around it. Is there anyone out there as mad as I am at the class action lawsuit? I would love to find out where the money we are supposed to get is going!! I know I have been cheated by those people. My lawyer said I should go on a talk show and tell my story. Yeah, right!!Thanks again for listening. PJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 By the way, PJ, you might want to check out the silicone immune protocol, which can get you started on the road to recovery from your health concerns. Have you actually been diagnosed with an autoimmune disease? You are going to have to get onto a detox program, and get your body into a cleansing and dumping mode to get rid of the toxins that have accumulated in your body, if you are not already on a program of some sort. You might want to go to the files section and check out the healing therapy articles. Take care, and let us know what more we can do to help you through this. Patty ----- Original Message ----- From: ronpatgordi4 Sent: Wednesday, September 11, 2002 10:20 AM Subject: Thank You I feel welcome already. To answer Patty, my right implant shows signs of leakage as it is getting smaller. It is also very sore.My other 2 sets of saline implants also ruptured. I heard on TV one time, Tom Brokaw I think, say if you had implants after masectomies, your chances of ending up in the hospital again were very good!! That was due to muscle spasms, I think. I am going to a new Dr. for me because we moved from Indiana to Tennessee. I would love to be able to go to the one in Indiana, (a female), but 480 miles away. I liked the Dr. in Huntsville, AL I was sent to. He understood everything and was really against me having any more implants but was leaving the decision up to me. I know what I am going to do, just a matter of when. I don't know if the Ins. will pay. That is alot of the problem. Waiting to see if it will.I have been going thru this since 1986. I have seen every kind of Dr. I thought could help me for all of the pain I am in. Fibromyalgia, acute arthritis, rheumatiod arthritis, etc., been told I have it all!I was told I had carpel tunnel. Had surgery on both hands, no help. I was a bank teller for 15 years but had to quit. I am glad I found this sight. I need help learning my way around it. Is there anyone out there as mad as I am at the class action lawsuit? I would love to find out where the money we are supposed to get is going!! I know I have been cheated by those people. My lawyer said I should go on a talk show and tell my story. Yeah, right!!Thanks again for listening. PJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2003 Report Share Posted September 6, 2003 Hi Sally, I take vit C, Bcomplex, fish oil, soy,primrose oil, digestive enzymes, calcium, cataplex E, and fortified wheat germ perls. The last two come from a local chiropracter and my nutritionalist suggested that I use them. I also use magnesium. but i think that i need more to supplement the type of diet that i am on. I will be talking to my nutritionalist soon and ask him about taking more. I also am going to have a hair analysis to find out about any deficiencies. I hope that this helps. Stay well. Marie ----- Original Message ----- From: " Sally " <salpal@...> <low dose naltrexone > Sent: Saturday, September 06, 2003 3:58 PM Subject: [low dose naltrexone] THANK YOU > HI ALL, > I JUST WANTED TO THANK YOU ALL FOR YOUR RESPONSES TO MY PLIGHT. i'M > NOT ABOUT TO GIVE UP ON LDN...JUST TAKING A SHORT BREAK, SO THAT I > CAN START FRESH. AND CONTINUED SUCCESS TO ALL....I DON'T KNOW WHAT > I'D DO WITHOUT YOU. > > BTW....FOR THOSE OF YOU WHO ARE DOING SO WELL, WHAT, IF ANY > SUPPLEMENTATION ARE YOU TAKING WITH YOUR LDN? mAYBE THERE IS A > SPECIAL LINK THERE? > > LOVE, SALLY > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 I live in Oklahoma as well and right now I have a lot of people donating to help with my medical expenses. I did not have medical insurance when all this began and ended up with a $20,ooo hospiatal bill. I, myself, was looking up mobility scooters just the other night. My husband gets upset when I do that and says that I will never need anything like that. Sometimes I feel like I am being a little more realistic than him. But I also forget that he is going through this as well even though it's different for them. Don't get discouraged. I know it is much easier said than done. Right now I am going through the same stage with the frustration and feeling like my life is over. I've heard that it takes a long time and work to accept this. I know that is true although I am not quite ready to accept it. Where in Oklahoma do you live? I go to a great rheumy and Oklahoma has a lot of resources to help with medication and bills. I am more upset about the financial burden I have put on my family. If you would like I could research on programs here in Oklahoma that help with medical bills, and also some of the places that help me might work for you as well. Let me know. Just remember that your wife is going through this with you as well as my husband is with me. He is in denial and your wife maybe as well. It takes time as frustrating as it may be. Best wishes, HollyGaranimal <garanimal_2000@...> wrote: well right now I dont have med insurance. when all this came up my boss called me and let me go. so we moved from Oregon to Oklahoma. so we are still trying to get things in order, we are going to SSI this week. as far as my wife gos I dont think it will get any better. (((she just cant take it or maybe she just cant))) I cant talk to her about how I feel , its like if its not about her then keep it to myself. so its hard... I was looking at mobility scooters online and she got so pissed.. so Im looking for some where to vent and just talk about how I feel. cuz Im not going to lie I was thinking about death and it freeks me out.. so Im need to change and find some help with this. and people to talk to. so I hope Im not being to open but I think I need to brake down. ok all Im starting to cry and thats some thing that I CANT DO ... so Im going to go for now have a good night Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 I have collected some links to financial assistance and perhaps some of them are still active and may help. God bless. Financial assistance https://www.pparx.org/Intro.php https://www.helpingpatients.org/Intro.php http://www.needymeds.com http://www.themedicineprogram.com Http://www.rxassist.org http://www.medicationfoundation.com/ http://www.nami.org/Content/ContentGroups/Helpline1/Prescription_ Drug_Patient_Assistance_Programs.htm http://www.qdrug.com/sf/ http://www.freemedicineprogram.com http://www.rheumatology.org/public/acrast.asp?aud=pat http://www.joniandfriends.org/helps/financia.shtml From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Holly Sent: Monday, March 27, 2006 9:44 PM Rheumatoid Arthritis Subject: Re: thank you § I live in Oklahoma as well and right now I have a lot of people donating to help with my medical expenses. I did not have medical insurance when all this began and ended up with a $20,ooo hospiatal bill. I, myself, was looking up mobility scooters just the other night. My husband gets upset when I do that and says that I will never need anything like that. Sometimes I feel like I am being a little more realistic than him. But I also forget that he is going through this as well even though it's different for them. Don't get discouraged. I know it is much easier said than done. Right now I am going through the same stage with the frustration and feeling like my life is over. I've heard that it takes a long time and work to accept this. I know that is true although I am not quite ready to accept it. Where in Oklahoma do you live? I go to a great rheumy and Oklahoma has a lot of resources to help with medica! tion and bills. I am more upset about the financial burden I have put on my family. If you would like I could research on programs here in Oklahoma that help with medical bills, and also some of the places that help me might work for you as well. Let me know. Just remember that your wife is going through this with you as well as my husband is with me. He is in denial and your wife maybe as well. It takes time as frustrating as it may be. Best wishes § Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Its important to note that RA in Men is more devastating then for women. It comes on like lightning and begins to destroy not only your body but your interpersonal relationships. SSI is a great start. Getting on a good biologic will help you feel better hopefully. Go to the local department of DHS where you live and begin the process. Remember that you can talk to your doctor about " compassionate use drug letters " that ask a drug company to offer their medication to those who cannot pay. Your wife is going to have to suck it up and step up for both of you for the time being. If a biologic works for you, you may be able to go back to work. In the meantime, Apply for Social Security Disability as well as financial assistance for utilities and food. If your company fired you outright, they should offer a severence. You should perhaps talk to an attorney about the terms of your employment contract and why your benefits were terminated without the benefit of short or longterm disability or cobra. Employers do fire people because they know it will cost them in insurance payments. That is ILLEGAL. They offer free legal consulations with disability lawyers in every state. It wont hurt to ask. If they even get a whiff of something like this, they will sack you just to get you off the insurance rolls. Also, gGet to a support group via the arthritis foundation. Check for chapter offices in your state. www.arthritisfoundation.org. This is a terrifying and stressful time for you and your spouse. I wish you the absolute best. Yours, Deborah On 3/28/06, Garanimal <garanimal_2000@...> wrote: well right now I dont have med insurance. when all this came up myboss called me and let me go. so we moved from Oregon to Oklahoma. so we are still trying to get things in order, we are going to SSI thisweek. as far as my wife gos I dont think it will get any better.(((she just cant take it or maybe she just cant))) I cant talk to herabout how I feel , its like if its not about her then keep it to myself. so its hard... I was looking at mobility scooters online andshe got so pissed.. so Im looking for some where to vent and just talkabout how I feel. cuz Im not going to lie I was thinking about death and it freeks me out.. so Im need to change and find some help withthis. and people to talk to. so I hope Im not being to open but Ithink I need to brake down. ok all Im starting to cry and thats something that I CANT DO ... so Im going to go for now have a good night Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 It so hard to be told that the life you once had is over, in my case my Dr didn'ttell me it was over I had to discover that on my own, with pain, and flares, andrealizing that am not who I was two years ago, and let me tell you its tough,and crying is just the answer sometimes, along with venting, but when youhave done all your crying and venting, then is the time to start looking afteryourself, you can't make you wife understand you can only help her to understand.Ask her to go with you to your appointment, as her to read the e-mail fromthe group, and maybe surf the web, about the RA and your other disease,together. if its hard to talk to her send her a e-mailing that might make iteasier.But the key to control this disease and not letting it take over your life, isthat you need to get on med as soon as possible. You need to find a GPwho can refer you to a specialist who can help you take control of yourlife..Garanimal <garanimal_2000@...> wrote: well right now I dont have med insurance. when all this came up my boss called me and let me go. so we moved from Oregon to Oklahoma. so we are still trying to get things in order, we are going to SSI this week. as far as my wife gos I dont think it will get any better. (((she just cant take it or maybe she just cant))) I cant talk to her about how I feel , its like if its not about her then keep it to myself. so its hard... I was looking at mobility scooters online and she got so pissed.. so Im looking for some where to vent and just talk about how I feel. cuz Im not going to lie I was thinking about death and it freeks me out.. so Im need to change and find some help with this. and people to talk to. so I hope Im not being to open but I think I need to brake down. ok all Im starting to cry and thats some thing that I CANT DO ... so Im going to go for now have a good night Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 The life you once had may well be over but you still have a life. I am reminded of the story “Welcome to Holland” about another kind of life change but also appropriate to RA. God bless. http://www.nas.com/downsyn/holland.html From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of vanessa Sent: Tuesday, March 28, 2006 4:26 AM Rheumatoid Arthritis Subject: Re: thank you It so hard to be told that the life you once had is over, in my case my Dr didn't tell me it was over I had to discover that on my own, with pain, and flares, and realizing that am not who I was two years ago, and let me tell you its tough, and crying is just the answer sometimes, along with venting, but when you have done all your crying and venting, then is the time to start looking after yourself, you can't make you wife understand you can only help her to understand. Ask her to go with you to your appointment, as her to read the e-mail from the group, and maybe surf the web, about the RA and your other disease, together. if its hard to talk to her send her a e-mailing that might make it easier. But the key to control this disease and not letting it take over your life, is that you need to get on med as soon as possible. You need to find a GP who can refer you to a specialist who can help you take control of your life. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 , You have some great advice, Thanks!!! Hollyvanessa <vedwards100@...> wrote: It so hard to be told that the life you once had is over, in my case my Dr didn'ttell me it was over I had to discover that on my own, with pain, and flares, andrealizing that am not who I was two years ago, and let me tell you its tough,and crying is just the answer sometimes, along with venting, but when youhave done all your crying and venting, then is the time to start looking afteryourself, you can't make you wife understand you can only help her to understand.Ask her to go with you to your appointment, as her to read the e-mail fromthe group, and maybe surf the web, about the RA and your other disease,together. if its hard to talk to her send her a e-mailing that might make iteasier.But the key to control this disease and not letting it take over your life, isthat you need to get on med as soon as possible. You need to find a GPwho can refer you to a specialist who can help you take control of yourlife..Garanimal <garanimal_2000@...> wrote: well right now I dont have med insurance. when all this came up my boss called me and let me go. so we moved from Oregon to Oklahoma. so we are still trying to get things in order, we are going to SSI this week. as far as my wife gos I dont think it will get any better. (((she just cant take it or maybe she just cant))) I cant talk to her about how I feel , its like if its not about her then keep it to myself. so its hard... I was looking at mobility scooters online and she got so pissed.. so Im looking for some where to vent and just talk about how I feel. cuz Im not going to lie I was thinking about death and it freeks me out.. so Im need to change and find some help with this. and people to talk to. so I hope Im not being to open but I think I need to brake down. ok all Im starting to cry and thats some thing that I CANT DO ... so Im going to go for now have a good night Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Hello Liane, I'm very happy to inform you that I will begin working on September 15th. Thank you for ALL of your prayers. I'm very blessed to be part of this wonderful Family. Luz y Carino, Tere Quote Link to comment Share on other sites More sharing options...
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