Re: Re: Thank you Everyone - to Ardeith

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Susa, You are right, so many people do not understand the fatigue and pain we all suffer. I had to "drop" many friends that didn't understand why I wasn't the same as I had been prior to my disease. Even many family members still don't understand and I don't have as much contact with most people from my "former life". You are very right, that you only need considerate and compassionate people in your life. It is sad that so many do not realize the debilitating nature of so many diseases and are not able to empathize with others, until, God forbid, that something actually happens in their life. Take care and stay strong, Clara Remember, in the end, only kindness matters. <littlerockfae@...> wrote: Hi, thank you for sharing your experience with me. All of your inputhelps me to better understand what is happening to me. Finally,people who know what I am talking about. It is so difficult to say tosomeone, I just can't go shopping today, I am really hurting. Theylook at me like that dog hearing his masters voice in the old victrola(I think it was a logo for RCA) anyway...one day maybe I will getthrough to them, or they will no longer be in my life. Really, thatis where I am headed. I only want compassionate, understandingindividuals around me now. Maybe that is what this condition isteaching me.---

In Rheumatoid Arthritis , "Ardeith "<ardeith@...> wrote:>> wrote: One thing I have learned is that my friends and familydo not> understand when I complain about fatigue or my aches and pains.> > Ardeith writes: My rheumy's office has a collection ofbrochures(sp?) about> RA and I absconded with a bunch to hand out to folks who didn't seem to> think RA was a serious disease. Another idea is to remind someoneof what> it felt like when they had a toothache, or sprained an ankle, or> whatever.....then I simply told them that most of my joints feellike their> toothache felt. I may be fortunate in that my hands and wrists showa lot> of damage......I can just point to that and tell folks that most of my> joints are like that....it just isn't visible

because I wearclothes! Like> I'd run around nude for their benefit! Yeah! Right!> > wrote: They just shrug it off and tell me to exercise more. ??> > Ardeith writes: Right!!!! Sure you should!!! They have noconception of> what stressing your joints can do to you, girl! Gentle exercisesto keep> as much flexibility as possible is a good thing......trying to jogdown to> the corner is not. Of course, you wouldn't wish RA on anyone, Iknow, but> you can sit back and snicker a bit if they complain of sore legsfrom their> latest five mile run, can't you?> > wrote: It is really not very well understood by those who haven't> experienced> it, is it.> > Ardeith writes: I watched my mother struggle with RA from the timeI was> about ten years old. She was one of those people who wasn't goingto admit> she could not do

something, and she did her joints a lot ofdamage......back> in the 50's and 60's when the medications were much less helpful. She wept> when I was diagnosed in '72. Then sat me down and told me what she had> learned the hard way..... which was a big help to me as I didn't have to> repeat her mistakes.....> Ardy>

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Dear - I remember losing the few close people I knew, minus family of course who were very compassionate until I blew up on prednisone through no fault of my own and then it was " dont eat that, you are getting fat and " pig " was used more than once. I remember that family was as cruel as anyone when even I didnt understand the horrible impact high dose steriod can have on your body. The man I was dating left because he said " youll be in a wheelchair in 5 years anyway " That was in 1999, I have another man in my life who is the ultimate in kindness and understanding and no wheelchair anywhere in sight. I am hovering around 100 pounds thanks to an overactive thyroid which came about from the RA. I look better now than I did seven years ago albeit the eyes look very tired. When I was finally diagnosed with RA, I called an advocate from the Arthritis Foundation referred me to, named Judy. She took me to my first support group meeting and became one of the dearest friends I have ever known. I started a support group and made several other friends. We would all get together and have lunch, those of us that were up to it. I met another girl who likes to fix broken people. Some people want to become your friend so they can make you repeat some positive affirmations over and over and tell you green tea and a few vitamins will cure you. I keep saying, I cant be fixed. This isnt something that will go away but they just insist that their way will work. Needless to say, short of a phone call, I wont be seeing this person much. The third friend was a bit intolerant of my " subject " matter when asked how I am. I wouldnt lie and say, Oh Im fine today. I would elaborate and they got tired of hearing the every day " ouch " list. I remember once hearing, " Can you please change the subject, Im tired of constantly hearing this over and over. " She now has RA. The first thing I ask is, How are YOU feeling? and I hear myself listening to the same things I told her years before. I choose the people in my life very very carefully. I tell them the truth straight away. This is who I am. This is what its like on a day to day basis. If you can live with that, or feel like that, or can befriend me despite that, then you have the priviledge of being a good person and someone I would like to know better. Make no excuses, Make no apologies, EVER. Some people think you chose this illness by not eating right or its a curse from unclean living. We did not choose to have this, but most people dont understand that or want to hear that. Its a dormant code sleeping inside your immune system and when the circumstances are just right, a switch goes on, and your white blood cells start attacking your joints, thinking you are the infection. Instead of defending you, it attacks you. You can mourn your old life, or rejoice in a new life, where the veil is lifted off everything you took for granted in your healthy life and find new meaning in simply existing in your present circumstances. Every day is a gift. Yes I wake up each day in pain and live in pain but it reminds me I am alive. Pain has become an intimate confidant. I listen to it and it tells me when I have done too much or taken my body for granted. Fatigue is its companion and I listen to it also, and sleep when it asks me to. Pain makes me aware of my body and makes me protect it and carefully listen to its demands. I hope everyone has a blessed day. Hugs, Deborah

On 1/30/07, C O <lovinlife1162@...> wrote:

Susa,

You are right, so many people do not understand the fatigue and pain we all suffer.

I had to " drop " many friends that didn't understand why I wasn't the same as I had been prior to my disease. Even many family members still don't understand and I don't have as much contact with most people from my " former life " . You are very right, that you only need considerate and compassionate people in your life. It is sad that so many do not realize the debilitating nature of so many diseases and are not able to empathize with others, until, God forbid, that something actually happens in their life.

Take care and stay strong,

Clara

Remember, in the end, only kindness matters. <littlerockfae > wrote:

Hi, thank you for sharing your experience with me. All of your inputhelps me to better understand what is happening to me. Finally,people who know what I am talking about. It is so difficult to say tosomeone, I just can't go shopping today, I am really hurting. They

look at me like that dog hearing his masters voice in the old victrola(I think it was a logo for RCA) anyway...one day maybe I will getthrough to them, or they will no longer be in my life. Really, thatis where I am headed. I only want compassionate, understanding

individuals around me now. Maybe that is what this condition isteaching me. It is really not very well understood by those who haven't> experienced> it, is it.> > Ardeith writes: I watched my mother struggle with RA from the time

I was> about ten years old. She was one of those people who wasn't goingto admit> she could not do something, and she did her joints a lot ofdamage......back> in the 50's and 60's when the medications were much less helpful. She wept> when I was diagnosed in '72. Then sat me down and told me what she had> learned the hard way..... which was a big help to me as I didn't have to> repeat her mistakes.....> Ardy

>

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Thank you Deborah for so beautifully describing my thoughts and feelings in your writings. I appreciate your positive redirected and honest approach. Thank you for your bright reminder of a wonderful example of how we need to nourish our own spirits with an embracement of looking at our medical issues as a new opportunity, rather than a negative belief system others or even ourselves! We have an opportunity to move to move through our pain begin to see things with greater understanding. Marie

On 1/31/07, Deborah Bargad <dbargad@...> wrote:

Dear - I remember losing the few close people I knew, minus family of course who were very compassionate until I blew up on prednisone through no fault of my own and then it was " dont eat that, you are getting fat and " pig " was used more than once. I remember that family was as cruel as anyone when even I didnt understand the horrible impact high dose steriod can have on your body. The man I was dating left because he said " youll be in a wheelchair in 5 years anyway " That was in 1999, I have another man in my life who is the ultimate in kindness and understanding and no wheelchair anywhere in sight. I am hovering around 100 pounds thanks to an overactive thyroid which came about from the RA. I look better now than I did seven years ago albeit the eyes look very tired. When I was finally diagnosed with RA, I called an advocate from the Arthritis Foundation referred me to, named Judy. She took me to my first support group meeting and became one of the dearest friends I have ever known. I started a support group and made several other friends. We would all get together and have lunch, those of us that were up to it. I met another girl who likes to fix broken people. Some people want to become your friend so they can make you repeat some positive affirmations over and over and tell you green tea and a few vitamins will cure you. I keep saying, I cant be fixed. This isnt something that will go away but they just insist that their way will work. Needless to say, short of a phone call, I wont be seeing this person much. The third friend was a bit intolerant of my " subject " matter when asked how I am. I wouldnt lie and say, Oh Im fine today. I would elaborate and they got tired of hearing the every day " ouch " list. I remember once hearing, " Can you please change the subject, Im tired of constantly hearing this over and over. " She now has RA. The first thing I ask is, How are YOU feeling? and I hear myself listening to the same things I told her years before. I choose the people in my life very very carefully. I tell them the truth straight away. This is who I am. This is what its like on a day to day basis. If you can live with that, or feel like that, or can befriend me despite that, then you have the priviledge of being a good person and someone I would like to know better. Make no excuses, Make no apologies, EVER. Some people think you chose this illness by not eating right or its a curse from unclean living. We did not choose to have this, but most people dont understand that or want to hear that. Its a dormant code sleeping inside your immune system and when the circumstances are just right, a switch goes on, and your white blood cells start attacking your joints, thinking you are the infection. Instead of defending you, it attacks you. You can mourn your old life, or rejoice in a new life, where the veil is lifted off everything you took for granted in your healthy life and find new meaning in simply existing in your present circumstances. Every day is a gift. Yes I wake up each day in pain and live in pain but it reminds me I am alive. Pain has become an intimate confidant. I listen to it and it tells me when I have done too much or taken my body for granted. Fatigue is its companion and I listen to it also, and sleep when it asks me to. Pain makes me aware of my body and makes me protect it and carefully listen to its demands. I hope everyone has a blessed day. Hugs, Deborah

On 1/30/07, C O <lovinlife1162@...

> wrote:

Susa,

You are right, so many people do not understand the fatigue and pain we all suffer.

I had to " drop " many friends that didn't understand why I wasn't the same as I had been prior to my disease. Even many family members still don't understand and I don't have as much contact with most people from my " former life " . You are very right, that you only need considerate and compassionate people in your life. It is sad that so many do not realize the debilitating nature of so many diseases and are not able to empathize with others, until, God forbid, that something actually happens in their life.

Take care and stay strong,

Clara

Remember, in the end, only kindness matters. <littlerockfae > wrote:

Hi, thank you for sharing your experience with me. All of your inputhelps me to better understand what is happening to me. Finally,people who know what I am talking about. It is so difficult to say tosomeone, I just can't go shopping today, I am really hurting. They look at me like that dog hearing his masters voice in the old victrola(I think it was a logo for RCA) anyway...one day maybe I will getthrough to them, or they will no longer be in my life. Really, thatis where I am headed. I only want compassionate, understanding individuals around me now. Maybe that is what this condition isteaching me. It is really not very well understood by those who haven't> experienced> it, is it.> > Ardeith writes: I watched my mother struggle with RA from the time I was> about ten years old. She was one of those people who wasn't goingto admit> she could not do something, and she did her joints a lot ofdamage......back> in the 50's and 60's when the medications were much less helpful. She wept> when I was diagnosed in '72. Then sat me down and told me what she had> learned the hard way..... which was a big help to me as I didn't have to> repeat her mistakes.....> Ardy >

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Dear Marie- Not many people think of their disease in a positive light. This is also true with pain. I was less than half a person before I got RA. I was vain and caught up in the world around me, and it was all so superficial. When you lay for almost a year undiagnosed, in bed pumped up on different anti inflammatory meds with my knee swelling like a balloon, or my fingers looking like sausages, you have alot of time to think. You have nothing but time. Suddenly you realize that you are dreaming about walking along the beach because you cant walk at all. You cry alot for the death of your healthy body. Alot of denial and alot of anger and frustration. You are so afraid of what new pain your body has in store for you today. I never thought of myself as a survivor or a fighter, but I was. When I was told I had lupus but the meds werent helping, I joined a support group for it. Then I was diagnosed with RA. I didnt know anything at all about it. I was handed a few pamphlets about it and two new med scripts. At that time there were NO biologics but that didnt stop me from fighting for the right meds, the cutting edge advanced stuff. I became a guniea pig and I didnt mind. I joined the arthritis foundation and met people who inspired me to lead a group of my own. I listened to my body and protected my joints. I blew up like a cabbage patch kid on prednisone until MTX came along and it helped. Then I found cyclosporine, also cutting edge at the time and I really got an amazing quality of life. I went to the library and poured over the Merck Manual about RA along with every article I could find in the mayo and john hopkins new letters about the disease and the medication I was taking. I went through rheumatologists like they were candy. Why? When a RD tells you there is nothing, absolutely nothing more that they can do for you, I would say thanks but I dont believe you. I would move on and find someone else, someone as insane to find a better medication as I was. I have tried everything but gold (ridura). I remember the day I started to read about Biologics. All I read was negative news and I hate needles so I waited and it was out for a year before I had to go on it. My cyclosporine had quit on me after 5 years and arava wasnt coming close. I have been on Remicade ever since 2000 and its given me a quality of life that at first was shockingly wonderful but over time has become less effective. Fatigue is my worst enemy these days and living in Maine doesnt help. Having RA is the best thing that ever happened to me because I found out who I was and why I was and made me walk the path of self discovery, self esteem, self respect and self love. Am I on disability? yes? Do I miss working? yes. Do I dislike my limitations? yes. But I have to love myself anyway and push myself to do for myself because no one else will. Do I get depressed. Of course but who wouldnt be. I cut myself loads of slack and am good to myself. I do one good thing for myself and one useful thing every day. A new book for me and a load of laundry. Cooking a meal and taking a long hot shower. I break down my must do's into a manageable week day schedule and set aside things I cant do during a flare for another day. People ask me why I have braces or support gloves for my hands or why I always look tired. I tell them. I never lie. I never say, " this is what life did TO me " but " this is what life has done FOR me " and I usually get a smile and a nod. Some people see my as broken and feel bad, and they should because being me isnt easy. I think they look at me and they think they are the lucky ones. Healthy and happy, vital and alive. I am the lucky one because unhealthy has redefined my perception of everyone else. Thats is something I wouldnt change for the world. Hugs, Deborah

On 1/31/07, Marie Salanoa <dreamingjeanie@...> wrote:

Thank you Deborah for so beautifully describing my thoughts and feelings in your writings. I appreciate your positive redirected and honest approach. Thank you for your bright reminder of a wonderful example of how we need to nourish our own spirits with an embracement of looking at our medical issues as a new opportunity, rather than a negative belief system others or even ourselves! We have an opportunity to move to move through our pain begin to see things with greater understanding. Marie

On 1/31/07, Deborah Bargad <dbargad@...

> wrote:

Dear - I remember losing the few close people I knew, minus family of course who were very compassionate until I blew up on prednisone through no fault of my own and then it was " dont eat that, you are getting fat and " pig " was used more than once. I remember that family was as cruel as anyone when even I didnt understand the horrible impact high dose steriod can have on your body. The man I was dating left because he said " youll be in a wheelchair in 5 years anyway " That was in 1999, I have another man in my life who is the ultimate in kindness and understanding and no wheelchair anywhere in sight. I am hovering around 100 pounds thanks to an overactive thyroid which came about from the RA. I look better now than I did seven years ago albeit the eyes look very tired. When I was finally diagnosed with RA, I called an advocate from the Arthritis Foundation referred me to, named Judy. She took me to my first support group meeting and became one of the dearest friends I have ever known. I started a support group and made several other friends. We would all get together and have lunch, those of us that were up to it. I met another girl who likes to fix broken people. Some people want to become your friend so they can make you repeat some positive affirmations over and over and tell you green tea and a few vitamins will cure you. I keep saying, I cant be fixed. This isnt something that will go away but they just insist that their way will work. Needless to say, short of a phone call, I wont be seeing this person much. The third friend was a bit intolerant of my " subject " matter when asked how I am. I wouldnt lie and say, Oh Im fine today. I would elaborate and they got tired of hearing the every day " ouch " list. I remember once hearing, " Can you please change the subject, Im tired of constantly hearing this over and over. " She now has RA. The first thing I ask is, How are YOU feeling? and I hear myself listening to the same things I told her years before. I choose the people in my life very very carefully. I tell them the truth straight away. This is who I am. This is what its like on a day to day basis. If you can live with that, or feel like that, or can befriend me despite that, then you have the priviledge of being a good person and someone I would like to know better. Make no excuses, Make no apologies, EVER. Some people think you chose this illness by not eating right or its a curse from unclean living. We did not choose to have this, but most people dont understand that or want to hear that. Its a dormant code sleeping inside your immune system and when the circumstances are just right, a switch goes on, and your white blood cells start attacking your joints, thinking you are the infection. Instead of defending you, it attacks you. You can mourn your old life, or rejoice in a new life, where the veil is lifted off everything you took for granted in your healthy life and find new meaning in simply existing in your present circumstances. Every day is a gift. Yes I wake up each day in pain and live in pain but it reminds me I am alive. Pain has become an intimate confidant. I listen to it and it tells me when I have done too much or taken my body for granted. Fatigue is its companion and I listen to it also, and sleep when it asks me to. Pain makes me aware of my body and makes me protect it and carefully listen to its demands. I hope everyone has a blessed day. Hugs, Deborah

On 1/30/07, C O <lovinlife1162@...

> wrote:

Susa,

You are right, so many people do not understand the fatigue and pain we all suffer.

I had to " drop " many friends that didn't understand why I wasn't the same as I had been prior to my disease. Even many family members still don't understand and I don't have as much contact with most people from my " former life " . You are very right, that you only need considerate and compassionate people in your life. It is sad that so many do not realize the debilitating nature of so many diseases and are not able to empathize with others, until, God forbid, that something actually happens in their life.

Take care and stay strong,

Clara

Remember, in the end, only kindness matters. <littlerockfae > wrote:

Hi, thank you for sharing your experience with me. All of your inputhelps me to better understand what is happening to me. Finally,people who know what I am talking about. It is so difficult to say tosomeone, I just can't go shopping today, I am really hurting. They look at me like that dog hearing his masters voice in the old victrola(I think it was a logo for RCA) anyway...one day maybe I will getthrough to them, or they will no longer be in my life. Really, thatis where I am headed. I only want compassionate, understanding individuals around me now. Maybe that is what this condition isteaching me. It is really not very well understood by those who haven't> experienced> it, is it.> > Ardeith writes: I watched my mother struggle with RA from the time I was> about ten years old. She was one of those people who wasn't goingto admit> she could not do something, and she did her joints a lot ofdamage......back> in the 50's and 60's when the medications were much less helpful. She wept> when I was diagnosed in '72. Then sat me down and told me what she had> learned the hard way..... which was a big help to me as I didn't have to> repeat her mistakes.....> Ardy >

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