Comments on: Rheumatoid Arthritis Pain in the Twilight Zone http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/ Bringing information & encouragement to fight RA Fri, 10 Feb 2012 20:28:38 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Jane Robbins http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-63163 Jane Robbins Sun, 10 Apr 2011 22:13:43 +0000 http://rawarrior.com/?p=3364#comment-63163 Wonderful response to a horrible article, Janette, I also read the article about the vet. RA is a beast that does ruin our lives, it takes everything away and only allows us to do what it wants us to do, when it wants us to do it. Plans can be made but RA is ultimately in control! I am a retired RN, it took my career away in a flash, with that most of my dreams for retirement, can't travel, no money, all my money goes for medical! Most of the time life sucks due to pain and disability, so how dare Arthritis Today tell us not to be "depressed". We should wage war on them, yes, I am ANGRY! I am sitting here my neck, with a titanium plate and needing one in my thoracic spine, hips, shoulders, knees, elbows, wrists, fingers~~~~all hurting~~~~RA, THE BEAST to blame, and they claim to "understand my "pain" I have a good team of doctors, thank God for that. But it is publications like that that make it harder for us that suffer from chronic pain to get the help we need. Drug abusers already make it harder for us to obtain medications for our pain and the DMARDS are so dangerous, but we soldier on and take them to prevent damage to our joints and internal organs, but we have to at least havesome sort of control over our lives, and I have always believed that "Knowledge is Power" and now the Arthritis Today Magazine wants to tell us that makes us hypochondriacs! Well, I do not agree and I don't think I will be picking up their magazine anymore or subscribing to it either. We must stick together! Wonderful response to a horrible article, Janette, I also read the article about the vet. RA is a beast that does ruin our lives, it takes everything away and only allows us to do what it wants us to do, when it wants us to do it. Plans can be made but RA is ultimately in control! I am a retired RN, it took my career away in a flash, with that most of my dreams for retirement, can’t travel, no money, all my money goes for medical! Most of the time life sucks due to pain and disability, so how dare Arthritis Today tell us not to be “depressed”. We should wage war on them, yes, I am ANGRY! I am sitting here my neck, with a titanium plate and needing one in my thoracic spine, hips, shoulders, knees, elbows, wrists, fingers~~~~all hurting~~~~RA, THE BEAST to blame, and they claim to “understand my “pain” I have a good team of doctors, thank God for that. But it is publications like that that make it harder for us that suffer from chronic pain to get the help we need. Drug abusers already make it harder for us to obtain medications for our pain and the DMARDS are so dangerous, but we soldier on and take them to prevent damage to our joints and internal organs, but we have to at least havesome sort of control over our lives, and I have always believed that “Knowledge is Power” and now the Arthritis Today Magazine wants to tell us that makes us hypochondriacs! Well, I do not agree and I don’t think I will be picking up their magazine anymore or subscribing to it either. We must stick together!

]]> By: Jane Robbins http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-63159 Jane Robbins Sun, 10 Apr 2011 21:32:16 +0000 http://rawarrior.com/?p=3364#comment-63159 This article is a crock, I usually read all articles with an open mind, being a retired RN, but this one, especially being in the Arthritis Today magazine!!!! They are supposed to be on our side! How dare them call us hypochondriacs! Let them walk one day in our body and then decide what our pain thresholds are!!!! They have no idea what our lives are all about, what we deal with day to day, how difficult it was to even get diagnosed, to get a doctor to tell us what RA even was, we were lucky to have the internet to guide us with information, then to tell us it was causing us to seek more "medical advice and care". I have a totally different opinion of the magazine now, I usually read it from cover to cover, don't think I will now! I am so proud of you and your posts Kelly! You keep us informed! Keep up the good work! The DMARDS alone are dangerous enough to be scared to death, let alone all the other meds we have to take just to make it through the days, then the nights come, we can't sleep good due to the pain, our whole lives changed in an instant, of course we are nervous, we need assurance that we will be okay, we have been diagnosed with an incurable disease and nobody else can even see it! Well, ARTHRITIS TODAY, I hope you get a chance to read this post from this reader, I deal with the BEAST called RA every minute of every day, it takes away from me, my children, my grandchildren, go ahead and call me whatever you want but I am surviving the best I know how! This article is a crock, I usually read all articles with an open mind, being a retired RN, but this one, especially being in the Arthritis Today magazine!!!! They are supposed to be on our side! How dare them call us hypochondriacs! Let them walk one day in our body and then decide what our pain thresholds are!!!! They have no idea what our lives are all about, what we deal with day to day, how difficult it was to even get diagnosed, to get a doctor to tell us what RA even was, we were lucky to have the internet to guide us with information, then to tell us it was causing us to seek more “medical advice and care”. I have a totally different opinion of the magazine now, I usually read it from cover to cover, don’t think I will now! I am so proud of you and your posts Kelly! You keep us informed! Keep up the good work! The DMARDS alone are dangerous enough to be scared to death, let alone all the other meds we have to take just to make it through the days, then the nights come, we can’t sleep good due to the pain, our whole lives changed in an instant, of course we are nervous, we need assurance that we will be okay, we have been diagnosed with an incurable disease and nobody else can even see it! Well, ARTHRITIS TODAY, I hope you get a chance to read this post from this reader, I deal with the BEAST called RA every minute of every day, it takes away from me, my children, my grandchildren, go ahead and call me whatever you want but I am surviving the best I know how!

]]> By: Kelly Young http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-59476 Kelly Young Tue, 08 Mar 2011 02:20:12 +0000 http://rawarrior.com/?p=3364#comment-59476 Hi Pam, I love your comment. That was my reaction too. How can they believe this garbage?? But over and over I've read that "baloney." Changing the name is one of the best ways to change the impression people have of RA - you're right. Hi Pam, I love your comment. That was my reaction too. How can they believe this garbage?? But over and over I’ve read that “baloney.” Changing the name is one of the best ways to change the impression people have of RA – you’re right.

]]> By: PamSeals http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-59466 PamSeals Tue, 08 Mar 2011 00:59:59 +0000 http://rawarrior.com/?p=3364#comment-59466 I just read through the article from the Arthritis Foundation. Please tell me that was a bad dream. Then let them explain the hideous swelling across the knuckles on my hands and the bone damage in my hands, the deformity in my feet. But it's all in our head. I want them to explain to me why I cant even squeeze a tube of toothpaste some days. Sorry that fired me up. I am a true blood southern woman. I work a 40 hour job plus a week,I am there everyday some days wishing I could die. But I am there with that supportive smile on my face. I can't believe the article it's a joke. That's why Arthritis needs to taken out of the disease,it needs to be called Rheumatoid Auto Immune Disease R.A.I.D. I just read through the article from the Arthritis Foundation.
Please tell me that was a bad dream.
Then let them explain the hideous swelling across the knuckles on my hands and the bone damage in my hands, the deformity in my feet. But it’s all in our head. I want them to explain to me why I cant even squeeze a tube of toothpaste some days. Sorry that fired me up. I am a true blood southern woman. I work a 40 hour job plus a week,I am there everyday some days wishing I could die. But I am there with that supportive smile on my face. I can’t believe the article it’s a joke. That’s why Arthritis needs to taken out of the disease,it needs to be called Rheumatoid Auto Immune Disease R.A.I.D.

]]> By: more keystone quackery « Inspiraven's Babble Box http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-54902 more keystone quackery « Inspiraven's Babble Box Fri, 11 Feb 2011 15:02:36 +0000 http://rawarrior.com/?p=3364#comment-54902 [...] Rheumatoid Arthritis Pain in the Twilight Zone [...] [...] Rheumatoid Arthritis Pain in the Twilight Zone [...]

]]> By: Kelly Young http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-54803 Kelly Young Fri, 11 Feb 2011 03:10:57 +0000 http://rawarrior.com/?p=3364#comment-54803 Janette, thank you for the remarkable comments. Janette, thank you for the remarkable comments.

]]> By: Janette http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-54740 Janette Thu, 10 Feb 2011 20:32:53 +0000 http://rawarrior.com/?p=3364#comment-54740 Once again Kelly you are right on target with your blog. I recently made a comment about RA being torture. Doctors wouldn't call those who were held prisoner by enemies,hypochondriacs due to a finger that was twisted slowly,feet they can no longer be walked on or nerve damage so bad that parts of your body don't move.If you view some of our pictres of RA and view those of POW's I dare you to find a difference.There is only one that I know of our enemy hides within our bodies and is so stealth the doctors with al their medical knowledge and tests can't find it. I do feel that since most of us are women and in our prime, doctors don't understand the amount of loss in our lives. Personally I call my pain my own "Rheumatic Stress Disorder!" A TV show told the story of a vet who came back with leg damage hurting so badly he elected to have the feet and lower legs removed. He was able to return to being a marathon runner with the new prosthetics. I imediately thought about my tennis and jogging lifestyle that was long ago after having 8 screws and 5 fusions into my ankles/foot joints and wrist. Imagine if I surgically removed my feet and was be able to exercise again! Yeah that is dramatic, ok for a soldier who ought an enemy but craz for a woman who has fouht RA at the time for 20 years. Since then my RA moved into my knee's and hips so no, I am not looking at this as a solution. However, at that time it made sense to cut off and remove the horrible pain I was in,the doctors had no solutions just a new med that didn't help me. Our pain is there, our pain is real and disfiguring and it causes stress, major stress in our lives. It ruins marriages, careers, motherhood,relationships with friends, sex lives and plays with your identity. For me to want to remove a body part to try to have some semblance of normalcy in my life was dramatic, but also a solution to a problem many doctors aren't able to grasp how life changing this disease is. Once again Kelly you are right on target with your blog. I recently made a comment about RA being torture. Doctors wouldn’t call those who were held prisoner by enemies,hypochondriacs due to a finger that was twisted slowly,feet they can no longer be walked on or nerve damage so bad that parts of your body don’t move.If you view some of our pictres of RA and view those of POW’s I dare you to find a difference.There is only one that I know of our enemy hides within our bodies and is so stealth the doctors with al their medical knowledge and tests can’t find it. I do feel that since most of us are women and in our prime, doctors don’t understand the amount of loss in our lives. Personally I call my pain my own “Rheumatic Stress Disorder!”

A TV show told the story of a vet who came back with leg damage hurting so badly he elected to have the feet and lower legs removed. He was able to return to being a marathon runner with the new prosthetics. I imediately thought about my tennis and jogging lifestyle that was long ago after having 8 screws and 5 fusions into my ankles/foot joints and wrist. Imagine if I surgically removed my feet and was be able to exercise again! Yeah that is dramatic, ok for a soldier who ought an enemy but craz for a woman who has fouht RA at the time for 20 years. Since then my RA moved into my knee’s and hips so no, I am not looking at this as a solution. However, at that time it made sense to cut off and remove the horrible pain I was in,the doctors had no solutions just a new med that didn’t help me.

Our pain is there, our pain is real and disfiguring and it causes stress, major stress in our lives. It ruins marriages, careers, motherhood,relationships with friends, sex lives and plays with your identity. For me to want to remove a body part to try to have some semblance of normalcy in my life was dramatic, but also a solution to a problem many doctors aren’t able to grasp how life changing this disease is.

]]> By: Kelly Young http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-54398 Kelly Young Tue, 08 Feb 2011 21:26:37 +0000 http://rawarrior.com/?p=3364#comment-54398 Oh, you're good, Beth. Maybe I can get my artist daughter to draw that! Oh, you’re good, Beth. Maybe I can get my artist daughter to draw that!

]]> By: Beth H http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-54386 Beth H Tue, 08 Feb 2011 20:13:23 +0000 http://rawarrior.com/?p=3364#comment-54386 You are spot on with this article Kelly! And I liked the window comparison by another reader. I really tire of the invisible disease status that we have as RA warriors before our joints look deformed. They have to get there somehow. You think that the eventual twisting of our hands,feet, etc,somehow happens without pain. That is laughable. I'm saddened that Arthritis Today would advocate such an article. We have so much to wade through as we drive our RA car. At this rate we will need a cattle gaurd on the front of it! You are spot on with this article Kelly! And I liked the window comparison by another reader. I really tire of the invisible disease status that we have as RA warriors before our joints look deformed. They have to get there somehow. You think that the eventual twisting of our hands,feet, etc,somehow happens without pain. That is laughable. I’m saddened that Arthritis Today would advocate such an article. We have so much to wade through as we drive our RA car. At this rate we will need a cattle gaurd on the front of it!

]]> By: Laurie http://rawarrior.com/rheumatoid-arthritis-pain-in-the-twilight-zone/comment-page-1/#comment-54377 Laurie Tue, 08 Feb 2011 18:50:05 +0000 http://rawarrior.com/?p=3364#comment-54377 I must remember to breathe , control myself and not act like a hypochondriac next week when I visit a pulmonologist to find out why my lungs have minor collapsing due to my rib arthritis, and I will remember to tell them my xrays are real, not altered. I wish the people who write these articles would just feel our pain for one day! Knuckles and other joints that balloon from semi normal to huge in an hour would be a learning experience for them. I am glad I have a caring primary and rheumey! I must remember to breathe , control myself and not act like a hypochondriac next week when I visit a pulmonologist to find out why my lungs have minor collapsing due to my rib arthritis, and I will remember to tell them my xrays are real, not altered.
I wish the people who write these articles would just feel our pain for one day! Knuckles and other joints that balloon from semi normal to huge in an hour would be a learning experience for them. I am glad I have a caring primary and rheumey!

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