Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Thank you for letting us know. -dz- Jannewilms42@... wrote: hi, This is jan's son jacob. mom is out of the hospital, she is hurting but all right. she will be on in a few days sincerely, jacob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 It would be great if your mom could witness your improvements using medication, and maybe she will consider seeing a doctor. I know it must be hard to see her like this when there are meds that could give her a better quality of life. a > My mom has RA, and has been too afraid to see a doctor for it (or > anything else) and at 62, she moves like someone 30 years older. She > is barely able to walk, hasn't driven a car in a few years, and > rarely leaves her home. She has taken lots of supplements and made > dietary modifications. When I was diagnosed with RA last Jsnuary, the > decision to take meds was an easy one. Despite the risks, I knew I > didn't want to end up like my mom. > > S. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Kristy, Does your mom have a good rheumatologist? What medications is she taking? Have they been working, and this is a recent set back or has the RA never reacted well to the medication? What does the doctor say? The best rheumatologist is one that says he will settle for nothing less than medication-induced remission. There are so many treatments available for RA. There is no guarantee that they will work, but if she's had RA for only 2 years, I wonder if there are options she has not tried. Getting the RA under control with medication is the best option, and she should not give up on that. As far as what you can do for her, just be there to listen. Let her ask you when she needs help and let her do things on her own when she needs to. It's very frustrating to not be able to do the things you used to be able to do. And sometimes you have to have someone help you. Other times you'd rather not do them at all since you can't do them yourself. When I can't get one of my daughter's sippy cups open to wash it, I just leave it sitting in the sink until my hands feel better and I can do it myself. Of course, I'd have to call someone to come over and do it for me so waiting makes more sense, but that is a different story. Has your mom tried exercising? The arthritis foundation has a website and you can enter your mom's zip code to find programs near her. Water exercise is a great place for her to start. www.arthritis.org/events/getinvolved/ProgramsServices/default.asp The biggest thing is that your mom is not alone. We are all struggling with this disease. Accepting the limitations that come with it is hard and often takes time. Does she have anyone else to talk to? Does she work? Perhaps she can find a local support group through the AF website or come and join us here. I think it is great you are finding ways to help her. Having a family member that cares that much can be the best remedy for any chronic illness. Jennie > > > My mother was diagnosed with RA about 2 years ago and has progressed > very quickly. She is losing use of her hands. I see the toll it is > taking on her but I am scared. When I was a kid my mom alos did my > hair for me and for the first time in my 21 years I had to do my > moms hair last night. She can't get her hand around the handle b/c > it is too small of a grip for her. Later that evening I caught her > crying b/c she can't do everything she used to. How do I help her > mentally. She says she feels embarrased and she gets frustrated > easily when her hands won't do what she wants them to. Any advice > that you could give me to lessen my mother's worries would be > greatly appreciated. > > Thanks, > Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Kristy,.....I feel that I'm having the same problems as your Mom. It's hard to deal with, and sometimes we need some extra help. Does your Mom take any type of med for depression? That might help a little. I also cry, and get frustrated, I know how she feels. What type of RA meds is she on? It might be time for a change, if they are not helping her. There are many out there, and you just have to keep trying until the right one works. The RA is really progressing with me too. I feel like it's raging in my body, and destroying it, and I can't do anything about it. I will be glad to go to the doc, when the Medicare starts, and get some help. I'm glad that you are there for her, that makes it so much easier. Just be stong for her,listen to her, hold her when she cries. It's so devasting on one, and also the family. Know that my thoughts and prayers go out to you, and the family, Tawny PS:See if you can't get your Mom on the board, it will help her lots. > > > My mother was diagnosed with RA about 2 years ago and has progressed > very quickly. She is losing use of her hands. I see the toll it is > taking on her but I am scared. When I was a kid my mom alos did my > hair for me and for the first time in my 21 years I had to do my > moms hair last night. She can't get her hand around the handle b/c > it is too small of a grip for her. Later that evening I caught her > crying b/c she can't do everything she used to. How do I help her > mentally. She says she feels embarrased and she gets frustrated > easily when her hands won't do what she wants them to. Any advice > that you could give me to lessen my mother's worries would be > greatly appreciated. > > Thanks, > Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Jennie, Thanks for the input. I know for sure that my mom has been on enbrel and she is now trying humira. There was one prescription before that but i don't remember the name. She says the Humira hurts so bad when it enters her body. I pray this works for her because I hate seeing her in this much pain. NO, the RA has never reacted well to anything and that is why she has tried several types in just 2 years. It has progressed so rapidly. Thanks again for listening and for the input. -Kristy > > > > > > My mother was diagnosed with RA about 2 years ago and has > progressed > > very quickly. She is losing use of her hands. I see the toll it is > > taking on her but I am scared. When I was a kid my mom alos did my > > hair for me and for the first time in my 21 years I had to do my > > moms hair last night. She can't get her hand around the handle b/c > > it is too small of a grip for her. Later that evening I caught her > > crying b/c she can't do everything she used to. How do I help her > > mentally. She says she feels embarrased and she gets frustrated > > easily when her hands won't do what she wants them to. Any advice > > that you could give me to lessen my mother's worries would be > > greatly appreciated. > > > > Thanks, > > Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Tawny, Thanks for the input. My mother has been on anti depressants for several years due to other medications. She just recently started giving her self Humira shots. Previously she was using Enbrel but did more good for her psorias than her RA. She takes so much medication for various illnesses and what not that I worry about her. I know she gets fed up with the medicine. She just doesn't want to do it anymore. I feel like she is giving up on everything. I have become very close to my mother over the last year and I hate to think of something worse happening to her. I don't know what i would do without her. She has become my bestfriend. The one person I can trust. I don't want to make this about me but I am only 21, I need my mother right now. I hope all goes well when you can go see your doctor. I will keep you in my prays. Thank you for all the input. It helps more than you know. > > > > > > My mother was diagnosed with RA about 2 years ago and has > progressed > > very quickly. She is losing use of her hands. I see the toll it is > > taking on her but I am scared. When I was a kid my mom alos did my > > hair for me and for the first time in my 21 years I had to do my > > moms hair last night. She can't get her hand around the handle b/c > > it is too small of a grip for her. Later that evening I caught her > > crying b/c she can't do everything she used to. How do I help her > > mentally. She says she feels embarrased and she gets frustrated > > easily when her hands won't do what she wants them to. Any advice > > that you could give me to lessen my mother's worries would be > > greatly appreciated. > > > > Thanks, > > Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Kristy,...Your doing everything for her, by just being there for her. Tell her how much you love her, and tell her your fears. She is scared to, so it's nice if you two can just talk about it. You are a young lady, and don't be ashamed to feel scared, your going through a tough time, watching your Mom, and you feel helpless. I hope that the Humira helps her, and she can start feeling better, and she won't feel so bad. Just be who you are, a lovely young lady with a lot of love for her Mother, hugs Tawny > > > > > > > > > My mother was diagnosed with RA about 2 years ago and has > > progressed > > > very quickly. She is losing use of her hands. I see the toll it > is > > > taking on her but I am scared. When I was a kid my mom alos did > my > > > hair for me and for the first time in my 21 years I had to do my > > > moms hair last night. She can't get her hand around the handle > b/c > > > it is too small of a grip for her. Later that evening I caught > her > > > crying b/c she can't do everything she used to. How do I help > her > > > mentally. She says she feels embarrased and she gets frustrated > > > easily when her hands won't do what she wants them to. Any > advice > > > that you could give me to lessen my mother's worries would be > > > greatly appreciated. > > > > > > Thanks, > > > Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Kristy, I take Humira too, and it does hurt when the medicine is going in. I read a recommendation somewhere to let it warm up for a few minutes before injecting it, that it might help. The Humira works well for me, and so I don't mind a few minutes of pain because it means I can function. The other drug may have been methotrexate. They used to take RA patients off methotrexate when they started a biological (Enbrel, Remicade or Humira) but now they leave you on it. They found patients have a much higher success rate with both methotrexate (mtx) and a biological together. Jennie > > > Jennie, > > Thanks for the input. I know for sure that my mom has been on enbrel > and she is now trying humira. There was one prescription before that > but i don't remember the name. She says the Humira hurts so bad when > it enters her body. I pray this works for her because I hate seeing > her in this much pain. NO, the RA has never reacted well to anything > and that is why she has tried several types in just 2 years. It has > progressed so rapidly. Thanks again for listening and for the input. > > -Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 Wow, , I'm so sorry to hear about your mom. A lot of us have been through exactly where you're at. I have had a transplant and even though I never felt depressed or the urge to give up, I know that the operation was much more difficult on my family than it was on me. I wish I were there to console her but please let her know that she can contact me or you can contact me. I'm here for you. I had a transplant over 15 years ago and my life has been so full ever since. I understand that initially the news can be devastating but it can and most probably will get better. Hang in there. Let us know what her diagnosis is and we can help further. On a lighter note: I'm happy to see another mac user out there. Amsterdam (formerly L.A.) ltx: Mar 18, 1990 >Hello all, > >My mom (62) has been diagnosed with liver cirrhosis. She is now >undergoing tests to see if >she is even eligible for a liver transplant. At this point we do >not know. She is very >depressed, on the verge of giving up. I have never had to deal with >anything like this in my >life, and I'm not sure how to handle it. I need support. Can >anyone refer me to a support >group for family members? Will this group be a fit for me, a family member? > >Hoping to hear from someone. Trying to be as positive as possible. > > >luisgonzales@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Try Matt Hastings Auto Immune hepatitis site. It is fantastic, the forums are particularly good as you can post questions and get responses from other users. I am a bit of an addict as it has really helped me. the address is www.autoimmunehepatitis.co.uk. Matt's story is inspirational he has had two transplants. Definately worth a look. [ ] my mom Hello all, My mom (62) has been diagnosed with liver cirrhosis. She is now undergoing tests to see if she is even eligible for a liver transplant. At this point we do not know. She is very depressed, on the verge of giving up. I have never had to deal with anything like this in my life, and I'm not sure how to handle it. I need support. Can anyone refer me to a support group for family members? Will this group be a fit for me, a family member? Hoping to hear from someone. Trying to be as positive as possible. luisgonzales@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 , You and your mom as well as your whole family are in my prayers. Wish you all the best. -- [low dose naltrexone] My Mom Hi Folks .. So, Moms cancer continues to spread despite 4.5mg LDN. She was due to start yet another round of chemo last Tuesday but we pulled the plug on that road. It is clear it is failing her. I am fortunate that my brother Dr Phil Boyle is going to treat our Mom. I have 4 brothers, and the five of us have joined forces and decided to try to figure out her best path through this ugly maze.This is our chosen path. Dr Gluck and Dr Zagon have been incredibly caring and most helpful during this challenging time. Like Dr Bihari suggested a while back, as I mentioned in the final chapter of my book, Up the Creek, Mom will now try Metenkephalin.Phil has successfully imported Metenkephalin (Opioid Growth Factor) to Ireland. He also started Mom on Noscapine. We have changed her diet to help our fight and she will continue to take herceptin and her bone strengthener. She took her first dose of OGF and Noscapine today so please God we are doing the right thing. It feels right. Everything fell into place for us relatively easily thanks to the personal efforts of every LDN doctor I have met on this journey. This is the LDN story, part 2. It is the LDN theory expanded. The meds from Israel cost 1685 US dollars monthly. My family have split the cost between all of us as we have concluded this is Moms best shot at survival.Keep us in your thoughts and Prayers.All the very Best Bradleywww.marybradleybooks.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 My prayers are with you! Parmajak1@... [low dose naltrexone] My Mom Hi Folks .. So, Moms cancer continues to spread despite 4.5mg LDN. She was due to start yet another round of chemo last Tuesday but we pulled the plug on that road. It is clear it is failing her. I am fortunate that my brother Dr Phil Boyle is going to treat our Mom. I have 4 brothers, and the five of us have joined forces and decided to try to figure out her best path through this ugly maze.This is our chosen path. Dr Gluck and Dr Zagon have been incredibly caring and most helpful during this challenging time. Like Dr Bihari suggested a while back, as I mentioned in the final chapter of my book, Up the Creek, Mom will now try Metenkephalin.Phil has successfully imported Metenkephalin (Opioid Growth Factor) to Ireland. He also started Mom on Noscapine. We have changed her diet to help our fight and she will continue to take herceptin and her bone strengthener. She took her first dose of OGF and Noscapine today so please God we are doing the right thing. It feels right. Everything fell into place for us relatively easily thanks to the personal efforts of every LDN doctor I have met on this journey. This is the LDN story, part 2. It is the LDN theory expanded. The meds from Israel cost 1685 US dollars monthly. My family have split the cost between all of us as we have concluded this is Moms best shot at survival.Keep us in your thoughts and Prayers.All the very Best Bradleywww.marybradleybooks.com No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.14.0/525 - Release Date: 11/9/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Hi It saddened me to hear of your mother's illness. Having read your book I feel I know your family and often wondered how your mum was keeping. We met with your brother when we visited him in the Galway clinic where we went to have my brother Paddy who is suffering from MND (ALS) prescribed with LDN. Dr Phil was just so kind and compassionate towards Paddy, I will never forget his kindness. I am sure you and your family will give your mother all the support she needs. Your book has given so much hope and support to people everywhere. I, in turn, wish you all well at this difficult time and thank you for your passion for LDN. Best wishes to your mum, I hope the road she travels is one that gives her an acceptable quality of life. Our thoughts and prayers are with you. Bernadette (Derry, Northern Ireland)June Kreuzer <parmajak1@...> wrote: My prayers are with you! Parmajak1 [low dose naltrexone] My Mom Hi Folks .. So, Moms cancer continues to spread despite 4.5mg LDN. She was due to start yet another round of chemo last Tuesday but we pulled the plug on that road. It is clear it is failing her. I am fortunate that my brother Dr Phil Boyle is going to treat our Mom. I have 4 brothers, and the five of us have joined forces and decided to try to figure out her best path through this ugly maze.This is our chosen path. Dr Gluck and Dr Zagon have been incredibly caring and most helpful during this challenging time. Like Dr Bihari suggested a while back, as I mentioned in the final chapter of my book, Up the Creek, Mom will now try Metenkephalin.Phil has successfully imported Metenkephalin (Opioid Growth Factor) to Ireland. He also started Mom on Noscapine. We have changed her diet to help our fight and she will continue to take herceptin and her bone strengthener. She took her first dose of OGF and Noscapine today so please God we are doing the right thing. It feels right. Everything fell into place for us relatively easily thanks to the personal efforts of every LDN doctor I have met on this journey. This is the LDN story, part 2. It is the LDN theory expanded. The meds from Israel cost 1685 US dollars monthly. My family have split the cost between all of us as we have concluded this is Moms best shot at survival.Keep us in your thoughts and Prayers.All the very Best Bradleywww.marybradleybooks.com No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.14.0/525 - Release Date: 11/9/2006 All New – Tired of Vi@gr@! come-ons? Let our SpamGuard protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 Prayers are with you and your family. Arlene -------------- Original message -------------- From: "mboylebradley" <mboylebradley@...> Hi Folks .. So, Moms cancer continues to spread despite 4.5mg LDN. She was due to start yet another round of chemo last Tuesday but we pulled the plug on that road. It is clear it is failing her. I am fortunate that my brother Dr Phil Boyle is going to treat our Mom. I have 4 brothers, and the five of us have joined forces and decided to try to figure out her best path through this ugly maze.This is our chosen path. Dr Gluck and Dr Zagon have been incredibly caring and most helpful during this challenging time. Like Dr Bihari suggested a while back, as I mentioned in the final chapter of my book, Up the Creek, Mom will now try Metenkephalin.Phil has successfully imported Metenkephalin (Opioid Growth Factor) to Ireland. He also started Mom on Noscapine. We have changed her diet to help our fight and she will continue to take herceptin and her bone strengthener. She took her first dose of OGF and Noscapine tod ay so please God we are doing the right thing. It feels right. Everything fell into place for us relatively easily thanks to the personal efforts of every LDN doctor I have met on this journey. This is the LDN story, part 2. It is the LDN theory expanded. The meds from Israel cost 1685 US dollars monthly. My family have split the cost between all of us as we have concluded this is Moms best shot at survival.Keep us in your thoughts and Prayers.All the very Best Bradleywww.marybradleybooks.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2007 Report Share Posted October 14, 2007 Thanks Dede- You always have the best advice. I have tendencies to overdue things all the time...I want my house spotless, everything in it's place, all my work done, all the laundry done, etc. My husband keeps telling me that I just need to learn to relax. I know he's right but it's difficult to re-train yourself after you've been the way you've been so long. Well, for those of you who were asking about my Mom earlier this week I just wanted to let you know that she has finally left that jerk, selfish husband of hers that she said would never let her explant (weird timing that I was JUST telling you about her.) As of now, I'm not sure this is good or bad as she hasn't been on her own for 12+ years. I hope this is a new beginning for her and she can start getting her life and health back, but I do worry about her, she also hasn't worked in 12+ years and I don't know how she's going to take care of herself. Please pray for her if you think about it as she needs all the prayer she can get. Love, Krista > > Girls ~ > There are a couple things that help me > greatly. One is some advice someone gave > me. Do not let the illness define who you are. > Separate yourself from it. Since you are > dealing with a body that has issues, you have > to allow yourself permission to do things it > takes to heal it, such as sleep when you need to. > cry when you need to, laugh all you can. Meditate, > a couple times a day if you can. Learn mind control, you > can sure learn how to do a good quick relax to the bodies > muscles that way. I did it while working at lunch, I would > completely check out for about 20 minutes, and when I > woke up, it would be like I took a good long nap ! Fully > relaxed ! learn new things that you like to do, and can do, even > if it is drawing or writing. > Visualize yourself healthy, doing things you enjoy, > make plans, set goals, and realistic ones........ > Talk to God, he is sitting right next to you. Pamper > yourself, breathe, try to remember to do some consious > breathing several times a day. As you breath in, visualize > God's love and warmth and healing energies going through > your body healing everything in its path, and exhale out > your mouth. > Hugs Prayers and Hope ~ D > > > > > ************************************** See what's new at http://www.aol.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Krista, Your mom will probably be better off in the long run without a man like that. I'll keep her in my thoughts and prayers. > > > > Girls ~ > > There are a couple things that help me > > greatly. One is some advice someone gave > > me. Do not let the illness define who you are. > > Separate yourself from it. Since you are > > dealing with a body that has issues, you have > > to allow yourself permission to do things it > > takes to heal it, such as sleep when you need to. > > cry when you need to, laugh all you can. Meditate, > > a couple times a day if you can. Learn mind control, you > > can sure learn how to do a good quick relax to the bodies > > muscles that way. I did it while working at lunch, I would > > completely check out for about 20 minutes, and when I > > woke up, it would be like I took a good long nap ! Fully > > relaxed ! learn new things that you like to do, and can do, even > > if it is drawing or writing. > > Visualize yourself healthy, doing things you enjoy, > > make plans, set goals, and realistic ones........ > > Talk to God, he is sitting right next to you. Pamper > > yourself, breathe, try to remember to do some consious > > breathing several times a day. As you breath in, visualize > > God's love and warmth and healing energies going through > > your body healing everything in its path, and exhale out > > your mouth. > > Hugs Prayers and Hope ~ D > > > > > > > > > > ************************************** See what's new at > http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Thank you, Lea. Yeah, not the best time for us both to be going through something major, it's difficult to support each other when you have such trauma going on in your own life. But, as I told her last night " this too shall pass. " It always does. Thank you for your support and Happy Happy Birthday!!!! Love, Krista > > > > Girls ~ > > There are a couple things that help me > > greatly. One is some advice someone gave > > me. Do not let the illness define who you are. > > Separate yourself from it. Since you are > > dealing with a body that has issues, you have > > to allow yourself permission to do things it > > takes to heal it, such as sleep when you need to. > > cry when you need to, laugh all you can. Meditate, > > a couple times a day if you can. Learn mind control, you > > can sure learn how to do a good quick relax to the bodies > > muscles that way. I did it while working at lunch, I would > > completely check out for about 20 minutes, and when I > > woke up, it would be like I took a good long nap ! Fully > > relaxed ! learn new things that you like to do, and can do, even > > if it is drawing or writing. > > Visualize yourself healthy, doing things you enjoy, > > make plans, set goals, and realistic ones........ > > Talk to God, he is sitting right next to you. Pamper > > yourself, breathe, try to remember to do some consious > > breathing several times a day. As you breath in, visualize > > God's love and warmth and healing energies going through > > your body healing everything in its path, and exhale out > > your mouth. > > Hugs Prayers and Hope ~ D > > > > > > > > > > ************************************** See what's new at > http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
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