Medical Hexing | Arthritis Information

 

Neither Cathy or I were referring to you.  I like a good debate!  It's sooooo much better than just going thru life with blinders, both figuratively as well as intellectually.  Yes, you came into a movie where the context and subtext are difficult to ascertain.  Think French New Wave Cinema.  LOL 

 

Pip

PS - If you feel more comortable discussing via PM, just let me know!

I really can't for the life of my understand why we are nit picking at what a word means.

 

The word 'acceptance' ---

I accept the diagnosis, I just don't accept the rheumatologists views that there is virtually nothing I can do about it and it is all down hill from here.  So for those sceptics, what part of 'acceptance' in my case don't you like or agree with.

 

If I had listened and believed the rheumatologist who said your PRA may progress to RA and if it does etc etc -- if I just accepted 'my lot in life' I would be waiting to become wheelchair bound and in extreme pain for the rest of my life and in the meantime be treating a disease I don't have just in case I might get it.   

 

I have chosen to fight this, and it is my right will do so, how I choose to do this is my decision and I don't need anyone's permission to do so.   The fact is the treatment path I have chosen happens to be AP and in order to go down that path responsibly I need the help and assistance of a doctor, fortunately for me I have one.

 

Maz

ps - Welcome back Pip...

  Maz-aust2009-03-03 17:33:17 Thanks Larry for making my point, once again.  My reality is a wasteland of moronic doctors in Florida who have now either lost their license, gone out of business, gone bankrupt, or left the State.  This was when I first got sick and was trying to get diagnosed.  They are still morons.  I have had fantastic care in Alaska and Washington in the past, so I was bewildered by what happened.  And I can post articles from the local papers to back up my statements about the "patient dumping" that was occuring while I got progressively sicker, and received no help.  That's my truth, just like Pip's truths are true for her.  Belittling us really makes you look, well, moronic, and non-accepting of other's truths. JSNM - I don't seem to have forgiven Chicken Lev enough to start praying for him but by your example I just might have to start.  Damn. [QUOTE=Pip!] [/QUOTE] I just realized that my 18 months under the rheumy who diagnosed me never said one word about cure, remission, outcome, hope, nothing at all.  Lynn, you just made me realize this, thanks.  Cathy[QUOTE=justsaynoemore]I just realized that my 18 months under the rheumy who diagnosed me never said one word about cure, remission, outcome, hope, nothing at all.  Lynn, you just made me realize this, thanks.  Cathy[/QUOTE] Lynn492009-03-04 05:27:16LOL - that's why I fired him.  His physical exam of my knees was through my clothing, and he squeezed my feet with shoes on.  LOL  Buh-bye, as I got a letter from him a year after I stopped seeing him, and he was leaving the State to go to NY, where he doesn't hold a medical license (I love the Internet).  But I start a new rheumatologist the end of this month, so I am cautiously hopeful.   I cannot type and talk on the phone at the same time, let alone drive too .... j/kPip. I think there is much to the mind body connection. I will read the article later when my life slows down a bit. I am RF positive but do not have RA. My daughter has a positive ANA and does not have lupus. My rheumy wants to test me for lupus as she thinks that is what I have. I cannot tell you what a diagnosis of RA did to my head over the past three years. Did it change me? Yep. Am I getting tested for Lupus? Nope. I have worked in a chronic disease unit for 20 years and have observed what a diagnosis does to people. I have heard doctors tell people there is no hope. I have sat with these people who are helpless and feel so hopeless. I have shed many tears with them. A diagnosis somehow changes things for people. It is almost like a chemical reaction occurs in some peoples brains.   Some people have the energy to fight and some don't. Some listen to and hang on to every word their doctor tells them and they resign themselves to that prognosis. Every time you see them, they are a little weaker and sicker. Finally, they die. They don't fight because they were told by someone there was no hope. It does not matter if it is cancer, RA, crohns, or whatever. It is all a disease process.

LinB I am glad that you have been able to fight through your disease and are now in remission. It is too bad that everyone cannot do the same. But many people do not have the means, either financial, emotional, or whatever to do this. Disease strips people of everything at times and you see it more and more with each admission. I'm sure you witnessed this as a nurse.

To all that posted. I read the thread until the first dagger was flung at Pip and then stopped. You took a subject that is so unbelievably interesting and pertinent to all of us and ruined a good thread. This is too bad. The really sad thing is, it is so relevant to your everyday life and you don't see it.Maz,

A couple of times now you have mentioned that your diagnoses was a wheelchair. Do you have another disease besides Palindromic Arthritis? Are there alot of Palindromic patients that end up in a wheelchair? That surprises me because unlike Rheumatoid Arthritis, Palindromic Arthritis causes no joint or bone damage. So where does the wheelchair come in at? With Rheumatoid Arthritis getting a good nights sleep can be a mission in itself. Lay on the left side and the pain in the left shoulder, left hip, left knee, left ankle and left 15 toe knuckles keeps an ra sufferer from a good nights sleep. When a Rheumatoid Arthritis sufferer lays on the right side, the pain in the right shoulder, the right hip, the right ankle, the 15 toe knuckles in the right foot and the right jawbone prevents a good nites sleep. Do you know what that's like? Can you "accept" that if you don't feel that? And all the while the "Rheumatoid" Arthritis is destroying the joints and bones, unlike your disease, "Palindromic" Arthritis that causes no bone or joint damage. Can you "accept" that? Can ya feel me sista? Of course you can't. You write about your pain in your ankle that you had to endure for the weekend. And just like that, two days and the pain is gone. That's how Palindromic works. When I read your post about your two day suffering with that swollen ankle, I was very fortunate to have just bought a new box of tissue. No offense. Can ya feel me sista? What percentage of Palindromic sufferers end up in a wheelchair because of that specific disease? A few times you have mentioned that you didn't want to take ra drugs that would "destroy" your immune system. Which drugs do that? I've heard of some that slow or alter the immune system but I haven't heard of those you speak of that "destroy" the immune system. None the less, people like you and Pip that don't have Rheumatoid Arthritis, have the luxury of trying anything you want. Yous have the luxury of not taking a medical experts advice. What's the worst that can happen? Every month or two, you get a flare in your ankle? Two days later it's gone. No damage done. That's not how it works with Rheumatoid Arthritis. As long as there is pain and inflamation, destruction is going on. Can ya feel me sistas. Of course you can't. You can't feel Rheumatoid Arthritis unless you have Rheumatoid Arthritis. And again, that is my debate and argument against people without Rheumatoid Arthritis, they can't feel me sista. They don't have the same life altering concerns that ra sufferers have to deal with. When a person with Rheumatoid Arthritis decides that they are smarter than the medical expert, that stupidity can cost an ra sufferer an arm and a leg in a very short period of time, literally. You and Pip don't have that concern. You do not have Rheumatoid Arthritis. Can ya feel me sistas. Boo-hoo to your two day swollen ankle. Boo-hoo to your come and go disease. I can feel ya sista. Only I can feel ya 24-7-365 multiplied by 10 joints. Here is what Rheumatoid Arthritis looks like. And hey, this isn't really all that bad. Many other have much worse:
http://www.kodakgallery.com/Slideshow.jsp?Uc=172ny0sz.rncpcyr&Uy=v28nv9&Upost_signin=Slideshow.jsp%3Fmode%3Dfromshare&Ux=0&UV=538888796634_72357283715&mode=fromshare&conn_speed=1

Once again I will say it. My offense is that people with-out Rheumatoid Arthritis cannot feel it, mentally or physically. Accept that. It can't be debated. That's just absolute fact. They don't have to worry about damage and life threatening problems associated with RA. People like Pip and you Maz only have to worry about your next two day flare that may not happen for another year. But why would anyone without RA feel that they are qualified in anyway to tell RA sufferers about RA, what they should accept, how they should feel and what medical path to choose? That's absurd. They can't feel it and they can't accept it. I know that the "group" will say I'm being "nasty". I am just stating facts. The truth seems to somehow annoy the group. The group wants a debate but only those agreeing with the group are allowed to debate or else the "group" grabs their AI forum badges and try to send those not agreeing and not kissing and hugging and bowing low enough, out of this forum.  And yes, justsaynoemore, I said a prayer for you. It was short and to the point.  My prayer concerning you? I prayed that you get what you deserve.

Lorster, seriously, you constantly talk about how bad the hospital and doctors are where you work. You constantly talk about the healthcare professionals at your hospital being wore out, overworked and stretched past safety. You tell everyone that the doctors there constantly overmedicate their patients and they have no concerns for the patients. Why don't you turn them in to the proper authorities. Certainly you will be a heroe, probably saving many lives. I couldn't sleep at night knowing that I was a part of such criminal activity. I hope you will consider turning these criminals in. And Lorster, the only "daggers" thrown were from your "group" members at those that had differing facts of the debate. I still find it strange that a few people without rheumatoid arthritis continue to post on a rheumatoid arthritis forum. I still believe that if a member without rheumatoid arthritis gives rheumatoid arthritis advice, they should make it perfectly clear that they do not have rheumatoid arthritis. I realize that they have over stayed their welcome at the palindromic forum and guess they are "homeless". I know that the "group" really don't like disagreements, too bad. I continue to take offense at people without rhumatoid arthritis trying to give rheumatoid advise. They don't have any idea what rheumatoid arthritis is and the problems, mentally and physically, that comes in the same suitcase. I know they are some of your dearest and closest friends, but they don't know it, they don't feel it, they don't have it and they just don't get it. Got it? Please Lorster, consider turning in those medical criminals that you work with. You and Pip and Justsaynoemore should get together and "out" all of the criminals and unqualifed healthcare professionals that yous talk about. Certainly they can't sue yous unless yous tell something that's not true, right? Name some names so that we can confront them. Put their personal medical information out here in the world wide web for all to see. Believe me, I will confront them with the medical malpractice accusations that yous post.

LEV


The above person gets my thanks for is long, rambling post.  He unwittingly proved my point.  I think this is the main problem between the AP and the non-AP people.  Something about this HOPE we have un-nerves some people.  The fact that some people can maintain their disease and get their lives back causes them to be unable to process information correctly because if we're right...and if this works...then what does that say about their choices?  So they blame the people who are succeeding instead of looking inside to find out where all that anger should be directed...possibly at the docs who took all their hope away? who is succeeding??  I want to know. Babs- [QUOTE=Pip!]The above person gets my thanks for is long, rambling post.  He unwittingly proved my point.  I think this is the main problem between the AP and the non-AP people.  Something about this HOPE we have un-nerves some people.  The fact that some people can maintain their disease and get their lives back causes them to be unable to process information correctly because if we're right...and if this works...then what does that say about their choices?  So they blame the people who are succeeding instead of looking inside to find out where all that anger should be directed...possibly at the docs who took all their hope away? Pip- Pip,

Without offense, without anger you are one of the people that I am talking about. Look at your above statement. Anyone reading that would be interested in what that member Pip with Rheumatoid Arthritis is talking about being cured of Rheumatoid Arthritis. There-in lies the problem. You don't have Rheumatoid Arthritis and you aren't being cured of Rheumatoid Arthritis. Pure deceit. Because you feel that your medical path for your disease, Palindromic Arthritis is working for you does not mean that your medical path is right for people with a different disease like rheumatoid arthritis. If you actually had rheumatoid arthritis and the mental and physical challenges that come with the disease, your path would probably, very well be a different path and your whole outlook on the disease and challenges would be completely different. You can't associate with that or accept that because you don't have the worrys and challenges associated with rheumatoid arthritis. We with rheumatoid arthritis don't have to every month or two cry about a flare in one or two joints that lasts for up to two days. You with Palindromic Arthritis, can make your medical decisions without worry of joint or bone destruction. You can make your medical decisions with out consideration to inflammation of the heart, lungs and arteries that may very well lead to death. You and others with your disease don't have those problems or concerns as those of us with rheumatoid arthritis must mix all the other very serious concerns into our medical equations and decisions. You and others without our disease cannot understand that and apparently yous can't accept it either and that's your problem. You can't because it doesn't affect you, therefore it's not needed for your medical decisions to consider the life threatening and debillitating effects of rheumatoid arthritis. Those are not needed parts of your equation to your medical pathway decision. Now can you see that those of us with a life threatening disease cannot afford to be so loosey goosey with our medical decisions. We have a life threatening disease. You have a life annoying disease. And oh yeah Pip, I'm not the one that is saying that AP therapy is not very affective against Rheumatoid Arthritis, that's the American College of Rheumatology and I accept them to be the foremost in knowledge. I will continue to consider the American College of Rheumatology medical recomendations well above you and your small groups recomendations. It used to be that the American College of Rheumatology was your and your groups favorite choice of information when you used small snippets and outdated postings to advantage your agenda. Now that they have updated their recomendations for Rheumatoid Arthritis therapy and minocin is practically never recomended, all of a sudden the American College of Rheumatology is only used when you or one of your group sneeks in an outdated post from the ACR on the AP thread. That in itself is deceitful because you will not post the updated 2008 therapy recomendations for Rheumatoid Arthritis from the American College of Rheumatology because it doesn't fit your and your groups agenda. Please, show me where on the AP thread where you have posted the updated ACR recomendations. Deceitful. And Pip, I don't blame the people that are succeeding. I love to hear about the success stories here at AI. It affects me. I actually have Rheumtoid Arthritis. I don't try to sway people to a medical pathway using snippets and deceit. One more thing Pip. There is no problem between the AP and Non AP members. The problems were/are when false and misleading statments are made. Fortunately those false and misleading posts have just about stopped except on the AP thread, thanks to me showing the truths and the deceit and false posts for what they are, right? And yes, I don't expect you to say thanks for me showing the truth and proving the deceit. But at least it has been stopped.

LEV


[QUOTE=Pip!]The above person gets my thanks for is long, rambling post.  He unwittingly proved my point.  I think this is the main problem between the AP and the non-AP people.  Something about this HOPE we have un-nerves some people.  [/QUOTE] I feel sorry for you Lev. You are a sad old man. You don't know that I do or don't have RA. I got out of the diagnosis. I don't want a diagnosis like that. Now I can get on with my life. I don't think at any point in this thread that I mentioned doctors were over medicating nor did I speak of anything but what I observe when I work. This could take place in any hospital across the country. I spoke about human behavior. How many hours of your life have you spent at the bedside of a person who is suffering or dying? How many Lev? Don't pretend that you know how a nurse of 20 years feels about the profession. You need to walk a mile in my worn down shoes. I was waiting for you to bring up the...you don't have RA, why are you posting here? Many on here are seronegative and have no damage. Do they really have RA? Or is it some other yet to be discovered diagnosis. I'll stay if I want. I'm sorry my new years resolution only lasted till March. You are spiteful and hateful in many if not most of your responses to people How sad is that. Speaking of shoes... how are the MBT's doing?  Have you gotten used to them yet?  I can't wait until it's nicer out so I can wear my MBT sandals.  They ain't much to look at, but I love how they feel. Jan Lucinda,

We've had a couple of members here that said that they had tried the AP protocol and that it didn't work and that they had even gotten joint damage during the therapy. A couple said that they had posted about the failure of the AP protocol and posted that they had gotten joint damage while trying AP on the roadback website. They said that roadback deleted their stories. Are only success stories allowed at roadback as has been charged? If that's the truth and they are so one sided, how can anyone expect to make a informed decision if only one side is allowed to post? Are there stories of not suceeding posted at the roadback? I could not find any "didn't work" posts.

LEV

Thank you for answering my questions, Pip. It's pure curiosity on my end. I still wonder about AP and whether or not it actually works at preventing damage associated with RA. I was telling my hubby about it this morning. I'm still curious as to whether or not your disease is actually being managed by the naproxen instead of the antibiotics. I don't think you'd be interested in being a guinea pig and going off the naproxen to see if the disease doesn't rear it's ugly head?