Guest guest Posted January 17, 2000 Report Share Posted January 17, 2000 Dear Geoff, I just returned from Seattle to find your letter. While away, I did a lot of thinking about this support group on the net. I thought about the wonderful woman in Dallas who is going to pick me up and take me to have my surgery, who has SD but does not have this support group, who has not told her family or " close " friends she has SD, and who carries this all alone. I would not trade for any of you guys. I was ready to get back to see how each and every one of you are doing and to share in your steps forwards and setbacks. So, Geoff, I truly appreciated your letter. It was from the heart and touched my heart. Thank you for you. Love, Geoff Crenshaw wrote: > From: " Geoff Crenshaw " <geoff@...> > > Hi Gang. Geoff Crenshaw here. > > Sunday was interesting. I entered the door to church and was greeted as > usual by Doug. Doug's what you might call an " older saint " . One day in > Sunday school I inquired after his wife, having never seen her in the 8 > years or so we've been attending. Doug says she doesn't walk in The Way, > she's not a believer and won't attend. But he does. And he covets prayer > for her. > > I sat inside church with my little family, our youngest being in the > nursery, and I noticed singing in the choir. I couldn't help but > think about what he'd been through. About 7 years ago, , then about > 27, lost his young wife to cancer. He and their son, then about 6, > remained faithful and the church prayed for them before her death, > helped them through, and then embraced them after. About a year later, > God brought a young woman into 's life from within the church and > they married. Roughly a year after that, little ny now about 8, came > down with leukemia. Vigilant prayer was sent up and the leukemia > remitted, much to the amazement of the attending physicians. (We held > our first of many public baptisms then, at the indoor pool of the > Holiday Inn as we were between " homes " while our new building was being > built. About 50 or so people got dunked that day, a calling which God > continues even today. Funny how the bathers in bikinis would leave when > the whole church showed up to baptize these new believers, even though > they were invited to stay. Guess you have to be " really secure " about > your body shape to hang out in a bikini with a bunch of fully clothed > people! We were there about 2 years.) About a year and a half later > brought young ny, now almost 10, a new baby sister. Then a few > months ago his leukemia came back and ny, now 14, passed his father > on the rode of life to join his mom. Again, the church rallied about > them. I sat there and watched sing praises to the Living God, hands > outstretched, tears streaming from his eyes, praising the Giver Of Life > even though he'd lost his wife and his son. And I turned to see his new > wife in the seats down and across the aisle bouncing their little girl > in her lap; the little girl who, now about 4, no longer has a brother, > with ny gone now just several weeks. > > And I thought. As my son, now 8, sat next to me in church I thought, > would I give my son to to make up for the son he lost. Then I > thought, would I give him up to be tortured and murdered to save little > ny? How about ? 's a good man, would I give him up for ? > I've offered my life as well as other men's lives in defense of others > in the past. Would I give my son, my only son? > > What if wasn't a good man. What if he was a rotten lout? A > murderer, a rapist, a thief. What if he had murdered my wife, raped my > daughter, burgled my house? Would I give up my son for him then. Would I > give up my son to go to jail, or to stand capital punishment for him so > he could go free? And would I then welcome this, this, this man with > open loving arms? > > And we had communion. > > And we sang Amazing Grace. > > And I wept. > > For I say truly, no - I would not, could not, give up my son, my only > son, for any of these. I could give up my life - but not his. And I > realized that I have no clue as to the depth and breadth of the love God > has for all of us to have given up His only son. > > And I looked at our Senior Pastor, who has Chron's. And at his wife whom > God cured by way of miraculous healing from malignant cancer that had > spread throughout her body and was untreatable. And then, after all the > prayers, He gave them a little gift, a baby girl - their second child, > both girls. > > Then my bride & I went to Sunday school. We attend a class of folks who > would qualify as, well, let's just say 60 and above and leave it at > that. I fit right in with this geriatric crowd. There must be a > half-dozen of us with RA. And I noticed Glen to my left. He's all bent > over and crippled, his hands are a mess, yet he serves as a Deacon. He's > married to a gal younger than he and they both work. He's a salesman, sh > e a school Principal. I told Glen about the Spes once. He tried it and > said it worked, but he couldn't afford it. I was surprised as they have > about four times the 'discretionary' income we do, but to each his own. > Then I looked at Bunny. Her husband Bill died two months ago from > complications of a dual knee replacement surgery (cheaper - two at > once). And I thought about , he died last week from a cancer in the > brain. The Prednisone made him look like a basketball with his " moon > face " . I last saw him when it was our turn on the " diner train " . My > 10-yr old daughter and I to took dinner over on Sunday during the > Superbowl while he was on his deathbed waiting to pass quietly at home. > And I thought about Billie. She's an RA'r too, replete with jewelry > braces for her fingers and medical cocktails and a little schedule she > carries with her faithfully so she doesn't miss any of the times and > drugs, and her husband who's a police detective and almost never gets > Sundays off, but attends when he does. > > Bunny had her granddaughter, , with her. She's a University > student and they asked for prayer for 's mother - seems she's been > dx'd with RA. I gave the support group's web site address. Maybe > it will help. Bunny was gone for two weeks after Bill died a month or so > ago, Ditto with and his wife. 's wife will probably be out the > same. But all the while they're " out " others are with them, bringing > them food, comfort, companionship and prayer. > > And I remembered something... church, a good church, is a very peculiar > and particularly special kind of support group, not wholly unlike our > little group here; but personal, face-to-face, and deeper. Like 's > wife when it was our turn to take them dinner as he was at home getting > ready to be truly healed. Like 's family as the people took care of > them. Like my family as they prayed for my bride when the doctors told > her she would never carry our third child to term. Like Annie whose > speech impediment makes it impossible to understand her but who came > through the " dinner train " cycle when she had surgery. > > Support can come in many places and many guises. When you can be a part > of it, you will get back more than you could ever give. > > Regards, > > Geoff Crenshaw, ACC ----------------------- > Captain Cook's Cruise Center ** Usual Disclaimers ** > ----------------------- > Why do I have hope? > Because I am under the blood of the Passover Lamb. > EXO 12:7-3 / MAR 14:24 / REV 12:11 > > ICQ 60333388 > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates > as low as 0.0% Intro APR and no hidden fees. > Apply NOW! > 1/975/0/_/532797/_/952533561/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 I enjoyed that, Geoff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Hi Everyone, I am new to this group, and I am not selling anything and would like to just say that I have been takeing my doxycline and I have Discoid lupus and another auto-immune disease called Pemphigus,which can be very bad, but I seem to have everything under control at this time. I had lesions in my mouth and a few on my head for 5 yrs. I switched from tetracycline to doxycyline, which hlped with pain but then I started to take MODUCARE sold as a food at health store and for the first time in 5 yrs. all my blisters disappeared. It is considered a food from plants and is supposed to BALANCE the immune system,but it doesn't cure anything but I certainly feel very good on this. I was on the Pemphigus line and there were 2 other people on there who told me about this, well I mentioned it 3 times on that line which is an AMA line, and I received a nasty letter and we 3 got kicked off. They wanted nothing but FDA and AMA approved drugs on there line, which I feel was awful as those people are takeing 80 MG of predisone a day and are a mess. I understand the not selling, but some lines don't want anything but the standard treatment. I f anything WE should be more opened minded and be glad that there are people telling what has worked out here or even helped. Thank you Its just my point of view. from Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 WELL SAID, EMILY. I am busy trying to get some scleradermas here, too, and I don't want them seeing this. do this privately. Love to all, Rizun wrote: > Hi everyone. Please do not anyone think of unsubscribing because of > what is going on right now. We have gone all thru this before. I > joined this group more than 2 yrs ago. and all the info and support has > helped me tremendously. I have had 2 people recently get in touch with > me about scleroderma, and helped them to get on the ap, after they read > all the info on this site, and if it wasn't for the group, I know they > would not have started the ap either. So please, if you don't like what > is typed on the subject, you can easily delete it. Keep up the good > work all of you have been doing in the past. WE ALL NEED YOUR SUPPORT. > Thanks for listening. > > > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 , Do you have a doctor near you that susbscribes to AP? I believe you are near Hamilton, Ontario which is about 45 minutes from me. Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Roni, I'm so sorry to hear about your friend and I can certainly understand how it would not only sadden you but frighten you as well. As I can say is I encourage you to not give into despair and think you are destined to follow the same path. While I think supplements and good diet can definitely benefit us all, I truly don't think they solve the underlying problem with these illnesses but I do think combining those treatments with the AP can have very definite benefits. There is a very sick scleroderma patient in my own local support who finally convinced her doctor (after a very long battle) to prescribe mino for her. When she started on mino, she only had 30% lung function, which was part of why her doctor fought using AP, saying she was too sick. Well, at our last meeting, her husband gave the happy report that after only a brief time on mino, this lady already shows improved lung function. So, there is hope but I know that doesn't necessarily help with the loss of your friend. I hope you can find some comfort in your memories of your friend. Hugs a rb09322@... wrote: > > Hello friends: > > I don't know if this is the proper place to post this, > but I don't know of any other group that will > understand. And I don't mean to make anyone > uncomfortable. I just received word today that a friend > who also had scleroderma passed away. I have been > really shaken by this. She had it for 35 years and kept > it at bay for awhile with juicing and supplements. She > was the one that first encouraged me to do the > supplements and juicing. I feel like I've lost my > mentor and guide. Just needed to cry a bit. Thanks. > Roni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Hi Roni and everyone else too, I am responding to your message about the friend with scleroderma who died and how you expressed your feelings of loss. I met my friend because she was director of the Arthritis foundation in our town when I first became sick with RA. She was a wonderful and dear person and we immediately clicked, spending two hours on the first phone call. Anyway, she really helped me so much coping with this disease, got me up and swimming and looking at ways to keep my joints healthy. She was suffering from lupus herself and had quite a story to share, but she was a giving, loving, full of life person, and she brought me to a place where I could at least cope with the disease. She died three years ago and I have missed her terribly. She left a huge gap in my life, but I have healed over time and strangely enough through this horrible disease I have met many people like the ones on this website who have helped me remember her in a good way...she taught me to share what I know about it in order to help people...and I do what I can to pass on her goodness. and for you, Roni, it will be a great comfort to know that your friend lives in you and through you,as you will also share what you know to others in suffering. That's how I remember Chris. Everytime I reach out and share my knowledge and compassion with someone I remember her and what she did for me. Even now as I write this. It won't take away your loss, I'm sure, but I hope this helps to comfort you in your time of grief. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Hello Roni, Several scleroderma patients in our city have died recently and none of them were taking antibiotics. It seems to be that juicing and very healthy diet help a great deal by boosting the immune system, but the antibiotics are necessary to beat the disease. I guess it's worthwhile mentioning that in the five years that this group has been in existence, only one scleroderma patient in the group using the antibiotics has died and he was very seriously ill with lung damage before he started antibiotic therapy. His wonderful wife said at the time of his death that she believed the antibiotics had given them longer together. Scleroderma patients taking antibiotics seem to live while those taking other approaches don't do as well. I feel for your pain at the loss of your friend. Chris. >Hello friends: > >I don't know if this is the proper place to post this, >but I don't know of any other group that will >understand. And I don't mean to make anyone >uncomfortable. I just received word today that a friend >who also had scleroderma passed away. I have been >really shaken by this. She had it for 35 years and kept >it at bay for awhile with juicing and supplements. She >was the one that first encouraged me to do the >supplements and juicing. I feel like I've lost my >mentor and guide. Just needed to cry a bit. Thanks. >Roni > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Roni - This is definitely the proper place to post your message. We do understand, and we do care. This group is good at rejoicing with your in your joys and sharing your tears in your sorrows. We support you in the loss of your dear friend. Be sad for your loss, but don't let any fear linger over you. You're on antibioitics now and you WILL begin to see improvements in your disease. Be thankful that your friend shared her knowledge of juicing and supplements with you and make good use of that information. They are good additions and complement the AP therapy. Praying that God will comfort your heart and that your many wonderful memories of your friend will help you through the days to come. With a big cyber hug and love, Judy rheumatic support > Hello friends: > > I don't know if this is the proper place to post this, > but I don't know of any other group that will > understand. And I don't mean to make anyone > uncomfortable. I just received word today that a friend > who also had scleroderma passed away. I have been > really shaken by this. She had it for 35 years and kept > it at bay for awhile with juicing and supplements. She > was the one that first encouraged me to do the > supplements and juicing. I feel like I've lost my > mentor and guide. Just needed to cry a bit. Thanks.. > Roni > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Louise, Your support and everyone else's support means more than I could ever put into words. This board is truly a safe place. No one judges you, they will listen even when you are in the deep throws of pity or depression. We also have extremely knowledgeable people on this board. It is truly a Godsend. It is the old story, you pick your friends, but you are stuck with your relatives. As for me and my husband, we are still not speaking. I told him last night and again this am, that we are eventually going to have to talk this whole thing out and he said that there was nothing to talk about. So I guess not much will change. My daughters see how Dad is, so they of course, are not going to act too much different. Vicious cycle. Sometimes, you just get tired of fighting the disease, family, physicians and bureaucracy. I even think that if I get turned down for SS again, I will just go back to work until they carry me out feet first. We got a call two weeks ago that his 86 year old Mom was dying of cancer. I thought he should go home to see her one last time as he has not seen his folks in a year. Well, he has made no plans and I don't think he is even thinking of going to see her. I am afraid that he is going to miss her and he will have to live with that. All I can do is offer. But now, however, it appears as though she is going to beat the cancer at age 86. She has been living with breast cancer for 24 years. There are days when I am sure these people are going to dance on my grave! They were old when I met Ron and they are really old now! My folks passed away 7 years ago. So if this is how he feels and treats his own Mom, I guess there is not much hope for me. Hope you are having a somewhat pain free day. We are still going thru the remnants of a non-tropical depression. So, we have rain and clouds all day. Hopefully, the sun will peek out tomorrow and give all of us a bit of a lift! Thanks again for all your wonderful support, my dear friend. Gentle, tender, angel hugs, Debs in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 > > > > > Just wondering if anyone was gonna post that link for > everyone > > > to > > > > > urge Oprah to raise awareness about plagio/tort? I actually > > > went > > > > > ahead and emailed her Jaden's story, since I've been on my > > > little > > > > > soapbox/bandwagon lately. AND I also sent Jaden's story > down > > to > > > > > Risk Mngmt/Patient Relations at the main clinic in Duluth > > > because > > > > > they oversee the whole clinic system where Jaden's pede is > > at. > > > So > > > > > now both sites have his story, and I am hoping they will > > > respond. > > > > I > > > > > will keep bugging them every week till they do. I called > the > > > > clinic > > > > > where his pede is at today, they are agreeing to accept the > CR > > > > > packets once I get the shipment. YEY:) > > > > > > > > > > ~Amy, mommy to Jaden 6 mo's MN, plagio/mild tort, started > > > > CranioCap > > > > > 4/23/04 SEEING SOME GOOD ROUNDING OUT NOW! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 : The one thing I've learned from RA is how to compromise. My house is no longer the immaculate place it used to be. Now, it's somewhat tidy at times....but looks lived-in. I can't go with friends and do things I used to....but I try and talk on the phone or send an e-mail to those who still keep contact. I had dreams of doing marathons, climbing mountains and running everyday. Now, I thank God that I can get out of bed most mornings and shower and dress without assistance most days. I am grateful for what I have now although it's not what I had in the past. Things can always get worse, so I appreciate what I have right now at this moment. There is a huge lifestyle change that goes along with being diagnosed with RA or other similar diseases. I strongly suggest to read/post here when you have questions or comments. Also, if there's a local support group where you live, try and attend. We may not have a choice as to whether or not we get this disease, but we can control whether or not we become isolated socially. The fact that you posted here shows that you're already making a choice to surround yourself with wonderful people who truly understand what you're dealing with everyday. Take care, > I appreciate all the ones that have shared what they are going thru and it > helps me knowing I'm not the only one. I sat last night doing a will for my 2 > children that are 23 and 30-- both 2 busy to spend time with gritchy ole > Mom. I sort of feel like my life is almost over at almost 48 and sitting here > worrying about being a burden. I'd rather die than have one week where my > kids have to take care of me. I'm single and up to now have been able to " pay " > for help. Between that and my 10% co-pays the savings is almost up. > > I do agree that with the pain being the same but honestly I'm not the type > person that is able to put on such a show. Maybe I'm missing that gene but > have always admired the type of person that continues on thru trials without > complaining. I " m missing the spirituality that I hear from some and perhaps > that's the difference. I'm not " as " disabled as some-- and so am blessed but > wonder what is going to come next. I know getting old isn't fun but then I > look at my 69 year old Dad riding his motorcycle . After I got " sick " I did > start a career although I miss being a nurse more than I ever thought. With > this I don't have to punch a time clock so I'm blessed but worry what is > going to happen if I can't continue. > > Its so frustrating to look at the condition of the house and then wonder if > its worth the energy. > I hate not being able to take care of my grandson-- or perhaps its my > daughter that won't allow him to stay with me. I hate not being a " normal' person > that can do shopping like others-- Christmas was the last time I went thru > SuperWalmart. I'm dreading the next knee injections and the thought of the > pain it causes-- but will hope the new joint fluid will help. > Worse is knowing that each Dr's visit so far has not been much help. I'd be > so lost without this computer and the telephone line, and the friends here. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 : The one thing I've learned from RA is how to compromise. My house is no longer the immaculate place it used to be. Now, it's somewhat tidy at times....but looks lived-in. I can't go with friends and do things I used to....but I try and talk on the phone or send an e-mail to those who still keep contact. I had dreams of doing marathons, climbing mountains and running everyday. Now, I thank God that I can get out of bed most mornings and shower and dress without assistance most days. I am grateful for what I have now although it's not what I had in the past. Things can always get worse, so I appreciate what I have right now at this moment. There is a huge lifestyle change that goes along with being diagnosed with RA or other similar diseases. I strongly suggest to read/post here when you have questions or comments. Also, if there's a local support group where you live, try and attend. We may not have a choice as to whether or not we get this disease, but we can control whether or not we become isolated socially. The fact that you posted here shows that you're already making a choice to surround yourself with wonderful people who truly understand what you're dealing with everyday. Take care, > I appreciate all the ones that have shared what they are going thru and it > helps me knowing I'm not the only one. I sat last night doing a will for my 2 > children that are 23 and 30-- both 2 busy to spend time with gritchy ole > Mom. I sort of feel like my life is almost over at almost 48 and sitting here > worrying about being a burden. I'd rather die than have one week where my > kids have to take care of me. I'm single and up to now have been able to " pay " > for help. Between that and my 10% co-pays the savings is almost up. > > I do agree that with the pain being the same but honestly I'm not the type > person that is able to put on such a show. Maybe I'm missing that gene but > have always admired the type of person that continues on thru trials without > complaining. I " m missing the spirituality that I hear from some and perhaps > that's the difference. I'm not " as " disabled as some-- and so am blessed but > wonder what is going to come next. I know getting old isn't fun but then I > look at my 69 year old Dad riding his motorcycle . After I got " sick " I did > start a career although I miss being a nurse more than I ever thought. With > this I don't have to punch a time clock so I'm blessed but worry what is > going to happen if I can't continue. > > Its so frustrating to look at the condition of the house and then wonder if > its worth the energy. > I hate not being able to take care of my grandson-- or perhaps its my > daughter that won't allow him to stay with me. I hate not being a " normal' person > that can do shopping like others-- Christmas was the last time I went thru > SuperWalmart. I'm dreading the next knee injections and the thought of the > pain it causes-- but will hope the new joint fluid will help. > Worse is knowing that each Dr's visit so far has not been much help. I'd be > so lost without this computer and the telephone line, and the friends here. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 , We're the same age, and up until now, my youngest has been an invaluable help around the house. I don't think I truly appreciated how much of the the burden she has taken off me- she's 18, going off to college this month. My older kids 29, 28, & 27, are too busy with their stuff to ask them for help, and they all live at least 45 to an hour away from me. I'm just trying to look at this as a new season in my life, and praying that God will give me some creative ways to handle things. I know that He loves me and that He wants the best life has to offer for me. If it were not for my faith, I don't know where I would be. There are very few people outside my RAM fam who really do know what's going on with me health-wise. I just tell people I'm doing fine, since most of the ones who really CARE can tell just by looking at me how I am,you know? I am single also, and I think that's probably a good thing; life is enough of a challenge without dealing with a new relationship w/someone who may or may not be able to deal with a chronically ill person with 4 kids, 2 steps, 5 grands, 2 step grands....I also spend a lot of time in Bible study, God is the first priority in my life, and the kids/fam second, church family next, so that's not a lot of room for a guy! I try to keep my sense of humor, because life is so fleeting and fragile, and I want to see all the wonder and miracles that I can, and I will-if I keep my eyes off my self and my circumstances long enough. Hang in there, brenda, e me anytime you need to talk or rant or whatever. God bless jane > I appreciate all the ones that have shared what they are going thru and it > helps me knowing I'm not the only one. I sat last night doing a will for my 2 > children that are 23 and 30-- both 2 busy to spend time with gritchy ole > Mom. I sort of feel like my life is almost over at almost 48 and sitting here > worrying about being a burden. I'd rather die than have one week where my > kids have to take care of me. I'm single and up to now have been able to " pay " > for help. Between that and my 10% co-pays the savings is almost up. > > I do agree that with the pain being the same but honestly I'm not the type > person that is able to put on such a show. Maybe I'm missing that gene but > have always admired the type of person that continues on thru trials without > complaining. I " m missing the spirituality that I hear from some and perhaps > that's the difference. I'm not " as " disabled as some-- and so am blessed but > wonder what is going to come next. I know getting old isn't fun but then I > look at my 69 year old Dad riding his motorcycle . After I got " sick " I did > start a career although I miss being a nurse more than I ever thought. With > this I don't have to punch a time clock so I'm blessed but worry what is > going to happen if I can't continue. > > Its so frustrating to look at the condition of the house and then wonder if > its worth the energy. > I hate not being able to take care of my grandson-- or perhaps its my > daughter that won't allow him to stay with me. I hate not being a " normal' person > that can do shopping like others-- Christmas was the last time I went thru > SuperWalmart. I'm dreading the next knee injections and the thought of the > pain it causes-- but will hope the new joint fluid will help. > Worse is knowing that each Dr's visit so far has not been much help. I'd be > so lost without this computer and the telephone line, and the friends here. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 , We're the same age, and up until now, my youngest has been an invaluable help around the house. I don't think I truly appreciated how much of the the burden she has taken off me- she's 18, going off to college this month. My older kids 29, 28, & 27, are too busy with their stuff to ask them for help, and they all live at least 45 to an hour away from me. I'm just trying to look at this as a new season in my life, and praying that God will give me some creative ways to handle things. I know that He loves me and that He wants the best life has to offer for me. If it were not for my faith, I don't know where I would be. There are very few people outside my RAM fam who really do know what's going on with me health-wise. I just tell people I'm doing fine, since most of the ones who really CARE can tell just by looking at me how I am,you know? I am single also, and I think that's probably a good thing; life is enough of a challenge without dealing with a new relationship w/someone who may or may not be able to deal with a chronically ill person with 4 kids, 2 steps, 5 grands, 2 step grands....I also spend a lot of time in Bible study, God is the first priority in my life, and the kids/fam second, church family next, so that's not a lot of room for a guy! I try to keep my sense of humor, because life is so fleeting and fragile, and I want to see all the wonder and miracles that I can, and I will-if I keep my eyes off my self and my circumstances long enough. Hang in there, brenda, e me anytime you need to talk or rant or whatever. God bless jane > I appreciate all the ones that have shared what they are going thru and it > helps me knowing I'm not the only one. I sat last night doing a will for my 2 > children that are 23 and 30-- both 2 busy to spend time with gritchy ole > Mom. I sort of feel like my life is almost over at almost 48 and sitting here > worrying about being a burden. I'd rather die than have one week where my > kids have to take care of me. I'm single and up to now have been able to " pay " > for help. Between that and my 10% co-pays the savings is almost up. > > I do agree that with the pain being the same but honestly I'm not the type > person that is able to put on such a show. Maybe I'm missing that gene but > have always admired the type of person that continues on thru trials without > complaining. I " m missing the spirituality that I hear from some and perhaps > that's the difference. I'm not " as " disabled as some-- and so am blessed but > wonder what is going to come next. I know getting old isn't fun but then I > look at my 69 year old Dad riding his motorcycle . After I got " sick " I did > start a career although I miss being a nurse more than I ever thought. With > this I don't have to punch a time clock so I'm blessed but worry what is > going to happen if I can't continue. > > Its so frustrating to look at the condition of the house and then wonder if > its worth the energy. > I hate not being able to take care of my grandson-- or perhaps its my > daughter that won't allow him to stay with me. I hate not being a " normal' person > that can do shopping like others-- Christmas was the last time I went thru > SuperWalmart. I'm dreading the next knee injections and the thought of the > pain it causes-- but will hope the new joint fluid will help. > Worse is knowing that each Dr's visit so far has not been much help. I'd be > so lost without this computer and the telephone line, and the friends here. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 , You sound really down in the dumps. It's tough dealing with so much loss and pain every day. I hope you talk to your doctor about how depressed you are. I wish I could cheer you up, but all I can do is say how much I understand how you feel. I hope tomorrow is a better day. a On Aug 8, 2005, at 7:07 PM, brenda3005@... wrote: > I appreciate all the ones that have shared what they are going thru > and it > helps me knowing I'm not the only one. I sat last night doing a will > for my 2 > children that are 23 and 30-- both 2 busy to spend time with gritchy > ole > Mom. I sort of feel like my life is almost over at almost 48 and > sitting here > worrying about being a burden. I'd rather die than have one week > where my > kids have to take care of me. I'm single and up to now have been > able to " pay " > for help. Between that and my 10% co-pays the savings is almost up. > > I do agree that with the pain being the same but honestly I'm not the > type > person that is able to put on such a show. Maybe I'm missing that > gene but > have always admired the type of person that continues on thru trials > without > complaining. I " m missing the spirituality that I hear from some and > perhaps > that's the difference.  I'm not " as " disabled as some-- and so am > blessed but > wonder what is going to come next. I know getting old isn't fun but > then I > look at my 69 year old Dad riding his motorcycle .  After I got > " sick " I did > start a career although I miss being a nurse more than I ever > thought. With > this I don't have to punch a time clock so I'm blessed but worry > what is > going to happen if I can't continue. > > Its so frustrating to look at the condition of the house and then > wonder if > its worth the energy. > I hate not being able to take care of my grandson-- or perhaps its my > daughter that won't allow him to stay with me. I hate not being a > " normal' person > that can do shopping like others-- Christmas was the last time I > went thru > SuperWalmart. I'm dreading the next knee injections and the thought > of the > pain it causes-- but will hope the new joint fluid will help. > Worse is knowing that each Dr's visit so far has not been much > help.  I'd be > so lost without this computer and the telephone line, and the > friends here. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 , You sound really down in the dumps. It's tough dealing with so much loss and pain every day. I hope you talk to your doctor about how depressed you are. I wish I could cheer you up, but all I can do is say how much I understand how you feel. I hope tomorrow is a better day. a On Aug 8, 2005, at 7:07 PM, brenda3005@... wrote: > I appreciate all the ones that have shared what they are going thru > and it > helps me knowing I'm not the only one. I sat last night doing a will > for my 2 > children that are 23 and 30-- both 2 busy to spend time with gritchy > ole > Mom. I sort of feel like my life is almost over at almost 48 and > sitting here > worrying about being a burden. I'd rather die than have one week > where my > kids have to take care of me. I'm single and up to now have been > able to " pay " > for help. Between that and my 10% co-pays the savings is almost up. > > I do agree that with the pain being the same but honestly I'm not the > type > person that is able to put on such a show. Maybe I'm missing that > gene but > have always admired the type of person that continues on thru trials > without > complaining. I " m missing the spirituality that I hear from some and > perhaps > that's the difference.  I'm not " as " disabled as some-- and so am > blessed but > wonder what is going to come next. I know getting old isn't fun but > then I > look at my 69 year old Dad riding his motorcycle .  After I got > " sick " I did > start a career although I miss being a nurse more than I ever > thought. With > this I don't have to punch a time clock so I'm blessed but worry > what is > going to happen if I can't continue. > > Its so frustrating to look at the condition of the house and then > wonder if > its worth the energy. > I hate not being able to take care of my grandson-- or perhaps its my > daughter that won't allow him to stay with me. I hate not being a > " normal' person > that can do shopping like others-- Christmas was the last time I > went thru > SuperWalmart. I'm dreading the next knee injections and the thought > of the > pain it causes-- but will hope the new joint fluid will help. > Worse is knowing that each Dr's visit so far has not been much > help.  I'd be > so lost without this computer and the telephone line, and the > friends here. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 MK, I can relate to how you're feeling - these are feelings I've been struggling with, too. It's a bitter pill to swallow, knowing that this was our choice, and our choice made us ill - but we were not properly informed and were told these things were " safe " . There are alot of injustices in this world, and it's sad that the physicians and government that we expect to keep us safe are turning their backs on us. However, even in my darkest hour, I firmly believe that eventually the guilty pay a price - even if we never see it. We're suffering and there will be many more to suffer after us, and we can take what's within our control and do something with it. Right now the reactions our bodies are having are out of our control. However, you're doing something that's within your control - you're having the implants removed. If you can't afford a lift right now, maybe somewhere down the road you will be able to have that, but the most important thing is having them removed. It's ok to feel ripped off, because you have been ripped off. I feel good in the fact that I stopped at least one person from getting implants by telling them my story - so somewhere in all this pain and sorrow I've managed to make a small difference. I get really scared because I don't know if I'll ever get my health back to where it was before I got implants. I can try to help that along by eating the right things, and taking care of myself, and praying for strength. I was already seeing a counselor before I got the implants, and I didn't tell her of my plan to get them, so it was really hard to visit her and tell her what had happened. I felt really ashamed. She helped me deal with all my emotions throughout this ordeal, and I'm thankful that my benefits pay for me to see a counselor, and I'm thankful that she now believes that the implants made me sick. At first she felt that they were safe, but once she heard that others had the same symptoms, and that there were doctors who specialized in caring for women who were sick because of implants, she became a believer. Time will help you to let go and deal with your anger, and unfortunately there's no magic pill to get you through those emotions - but keep reaching out and we'll do our best to get you through this. It's really tough leading up to the explant, but once they're removed it's such a relief. Sis > > Hi, > > I need some support and encouragement. I am so angry and > discouraged. I feel so much emotion. I feel violated. I am mad > about the way that I have been treated. I know that anger isn't > healthy. When I am not angry I feel so depressed. > > I am sad that I saved up money for implants that were to better my > life. I know hindsight is 20/20, but still it is hard accepting > this. I can barely afford getting them out. Not to mention all of > the other financial burdens my implants have brought into my life. I > am told that I will need a lift, but I cannot afford it. I feel > fortunate that I am getting an explant and thank God for Dr's that > understand and this group. I think it is wonderful that women > are speaking out about their experiences (Now I am too), if they > hadn't I would have never figured out why I was so ill. But still I > feel such a horrible loss. My friends and family tell me that it > will be okay and who cares about my figure, but it isn't just my > figure it is how I feel. It is depressing to constantly be battling > daily pain and fatigue. It is scary to be presenting with signs and > symptoms of diseases like Lupus and RA. I also breastfed 2 children > with my implants. Then you add in the other things and it is over > whelming. I need help letting go and dealing with my anger and new > physical appearance. > > Hugs to all, MK > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 MK, What you are feeling is perfectly normal! . . . But you needn't feel ashamed . . . You were duped! . . . and millons of other women are being duped! . . . We MUST find a way to stop it! In the meantime, in the interest of your health, you'll need to do some mental gymnastics to avoid dwelling on your anger. Anger is a very dangerous emotion to hold onto. Try finding some pleasant thoughts to retreat to when you feel those angry feelings coming on. . . Your body will thank you! Even though it's been almost thirteen years since my implants were removed, I can have a major flare if I let anger take over. Please guard your emotional state and don't let those B******* have any more of your precious time or life. Hugs and prayers, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 MK It is really hard to let go of that anger and depression. It isn't a small thing we are talking about here and that is what makes it so hard. Also, you are feeling so many things and that only compounds matters. Loss of health, anger over the deceptively marketed implants, financial problems, worry over how you will look, regret, worry over your children's health, and the list goes on and on. I find that I have to deliberately encourage myself when everything gets me down---and distract myself with funny reruns, etc. Laugher is so good for healing. In fact, there is proof that people have cured their cancer with it. I read this once and didn't think it would work...but tried it and it did work. This article said that you had to limit yourself to worry, despair, etc for a time period each day. The rest of the day you force out of your mind any negative thought or worry. Then say at 7pm. you allow yourself to worry for one half hour. Worry as hard as you can. Be as depressed as you can. But at 7:30 it is over until the next day. Then keep cutting the time back to less each day. This shows you that we do have the ability to stop the harmful emotions we feel. It is hard, and takes discipline. But we can choose what we allow ourselves to think and feel...and I have proved it to myself. But I often fall back to my old ways. That is when I go to God for help. I find alot of inspiration in watching Joyce Meyer's enjoying everyday life too. She is such an encouragement about our victories over life's troubles. It is essential that we have faith that our lives will change--that we will be healed and that we will experience joy again. I am praying for you that you will experience victory in crowding out depression and worry and other negative emotions with absolute faith in healing and joy and peace. love, kathy > > Hi, > > I need some support and encouragement. I am so angry and > discouraged. I feel so much emotion. I feel violated. I am mad > about the way that I have been treated. I know that anger isn't > healthy. When I am not angry I feel so depressed. > > I am sad that I saved up money for implants that were to better my > life. I know hindsight is 20/20, but still it is hard accepting > this. I can barely afford getting them out. Not to mention all of > the other financial burdens my implants have brought into my life. I > am told that I will need a lift, but I cannot afford it. I feel > fortunate that I am getting an explant and thank God for Dr's that > understand and this group. I think it is wonderful that women > are speaking out about their experiences (Now I am too), if they > hadn't I would have never figured out why I was so ill. But still I > feel such a horrible loss. My friends and family tell me that it > will be okay and who cares about my figure, but it isn't just my > figure it is how I feel. It is depressing to constantly be battling > daily pain and fatigue. It is scary to be presenting with signs and > symptoms of diseases like Lupus and RA. I also breastfed 2 children > with my implants. Then you add in the other things and it is over > whelming. I need help letting go and dealing with my anger and new > physical appearance. > > Hugs to all, MK > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 Hello everyone, I am 33 years old and was diagnosed with RA at 27. Since then I have been steadily going downhill. I try to pretend that everything is fine and I am not sick but I feel like I have reached the end of my rope. I am looking for someone that can not only listen but understand how I feel. Just glad/sad to know that there are others out there that might be feeling as bad as I do. I would like to know if anyone has had any experience with infusion treatments. Specifically Orencia or Rituxan. This is the next step for me. If one of these do not work then I have been told my only other option is a stem cell transplant.....any advice is welcome, Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Sorry that you are going through a difficult time. I am here for you if you need me. Cassy > > Hello everyone, > I am 33 years old and was diagnosed with RA at 27. Since then I have > been steadily going downhill. I try to pretend that everything is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Sorry that you are going through a difficult time. I am here for you if you need me. Cassy > > Hello everyone, > I am 33 years old and was diagnosed with RA at 27. Since then I have > been steadily going downhill. I try to pretend that everything is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 > > Hello everyone, > I am 33 years old and was diagnosed with RA at 27. Since then I have > been steadily going downhill. I try to pretend that everything is fine > and I am not sick but I feel like I have reached the end of my rope. I > am looking for someone that can not only listen but understand how I > feel. Just glad/sad to know that there are others out there that might > be feeling as bad as I do. I would like to know if anyone has had any > experience with infusion treatments. Specifically Orencia or Rituxan. > This is the next step for me. If one of these do not work then I have > been told my only other option is a stem cell transplant.....any > advice is welcome, > Thank you, > > -- I'm sorry you're going through so much!! I don't personally have any experience with either Orencia or Rituxan, but have read about people having quite a bit of success with both. I hope one works well for you! The reason I'm posting is because you mention stem cell transplant--a poster in another board I visit at the Arthritis Foundation's web page (http://www.arthritis.org/communitiesnew/Forum/viewmsg.aspx?msggroupid=22) has been through this procedure and so far has had good success. She has posted about her experience on that board. (Do a search for " stem cell " on the forum if you're interested.) dordale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Hi : Welcome to the group - the people here are very friendly, supportive, and will help you as much as they can to get through this RA journey. It sounds like you have an aggressive disease and I am so sorry to hear that you have not had any great success so far in your treatment. I am currently on Enbrel and Methotrexate, as well as Mobic and Ultram ER, and find those to be holding my RA pretty steady. I worry what I would do if the Enbrel stopped working for me. I have been dx for 7 years now, and also have OA and fibro. I truly understand how it is to be in pain 24/7. I believe there are a couple of people in the group who are trying Orencia, and I hope that they will write in to you about it. I hope that one of these meds will be of help to you, and give you the quality of life you want and need. I know that stem cell transplantation has also been spoken of here in the group. You might want to check the archives for info on all three newer treatments. best of luck and take care - Kathe in CA --- christine <cbaldy32@...> wrote: > Hello everyone, > I am 33 years old and was diagnosed with RA at 27. > Since then I have > been steadily going downhill. I try to pretend that > everything is fine > and I am not sick but I feel like I have reached the > end of my rope. I > am looking for someone that can not only listen but > understand how I > feel. Just glad/sad to know that there are others > out there that might > be feeling as bad as I do. I would like to know if > anyone has had any > experience with infusion treatments. Specifically > Orencia or Rituxan. > This is the next step for me. If one of these do not > work then I have > been told my only other option is a stem cell > transplant.....any > advice is welcome, > Thank you, > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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