Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 well put...one of the things i hate the most is when u mention u have RA and the person replies " oh yeah , i have arthritis too...then launches into a rant about how their knee bothers them when they exercise too much etc...oh well...we that know will perservere....frank carnes b_hovey1 <ehovey4@...> wrote: Here is the Family Letter that I have, I have saved in my word documents for future reference or reminder. I received it from one of the websites on RA: Subject: What RA is Like: A Letter for Family and Friends It is possible to walk to the park one day and be unable to do so another day. The reverse is also true. Some days just moving around the house is hard enough. Some days I need splints, a cane, ACE wraps, or even a wheelchair. Other days I don't. Just because I don't always need those helps, doesn't mean I'm faking it. My pain can travel from joint to joint from day to day or in fact, hour to hour. I sometimes need a handicapped spot. I don't like it. But, I need it. I may look healthy enough that I don't need it but walking out of the store, I will likely be having problems walking. The medicines I take may have nasty side effects. I know this. I don't need reminders of this from someone who doesn't live in my body and feel my pain. I don't enjoy taking the medications but I have a disease that needs to be medicated. Don't lecture me about the addictive nature of pain medications. I know the risks. And don't judge me for using pain medications. It doesn't mean I am weak. It means I have pain. If it is a choice between pain medicines allowing me to live a more normal life and not taking them out of fear, I choose having a more normal life. Standing, sitting, walking, and laying can all be painful. Life is unfortunately painful. I have pain, swelling, limited energy, joints that don't move right and other symptoms. Sometimes, I'm grumpy because of this. I try not to be but sometimes it comes out despite my attempts to be happy and nice. In addition to the pain and other symptoms, I may be feverish, feel tired, or even have joints that don't look " normal " . This is all due to RA. Please don't suggest " cures " . RA has no cure (at least now). So, I have it, it is ncurable. Live with it.I do. I trust my doctor and the treatment plan we've worked out between us, so please don't try to convince me you know a person who " cured " themselves with diet, supplements etc. It may have helped them or it may not have. It could just be the cyclical nature of RA that fools them into thinking they've been " cured " . If you've ever broken a bone, think of that pain and magnify it. Then imagine all over your body. That's how I feel at times. When I travel with you, please understand that for my health, I may need to have frequent stretch breaks. I'm not doing it to slow our trip down. I don't take joy in having a hard time getting moving after sitting for awhile. Don't hassle me over it. Don't assume when you hear the word " arthritis " that I mean osteoarthritis, which is what most people think of when hearing arthritis. Most people associate the word with the wear and tear arthritis of aging. I may have OA as well which is that very type. But, I have rheumatoid arthritis, which is an auto-immune disease that causes my body to attack itself. I'm not too young for either. Infants get RA as well as adults. Unfortunately, OA is not just a disease on its own; it can come as a secondary disease to RA. So, I'm not too young for arthritis, please don't tell me I am. And if you still think I am, well, my body and doctors say different so I'm going to listen to them, not you. I may need to rest more often than most people. It's not that I'm lazy. It's that RA causes fatigue. And that fatigue can come and go or be persistent. Imagine having the flu all of the time. I may not have " just " RA. There are many other diseases that can go along with it. Those diseases also take their toll on me with symptoms, medications and problems. I don't enjoy turning down certain activities due to my RA. I may not always turn that down; it is just that particular time may be a bad time for me. Don't assume I'll always turn things down and stop asking me. That makes me feel so left out. But also if I do say no, don't try to make me feel guilty. And if I say yes, but have to change my mind later, please don't be angry. I don't like doing that but sometimes despite my best planning; I just can't make my body cooperate. There are things I can do that I also enjoy doing that may look like a struggle to you. Please don't try to " protect " me by taking things from me or stopping me from doing something. If I'm doing something and not asking for help, it is because I am ok doing that. I'll likely ask for help if I need it. But also know that I may be too proud or stubborn to ask for help too. If you wish to help, don't just take over. Ask if you can help. If I say yes, ask what the best way to help me will be. If I say no please don't be offended, it is likely something that I may struggle with but gives me pleasure to do. (This doesn't apply to spouses and friends who have known you for long enough to have worked out non-verbal clues of needing help.) Just because I look healthy, doesn't mean I am. RA is in many ways an invisible illness. Normally, it takes many years for the effects of RA to be seen visually. Even those who have had RA for many years may look healthy. Please do not think it is funny to force me to shake hands and then use a crushing grip. It's not funny and it's quite painful to be honest. Also please don't assume because I don't shake hands that I'm a snob or anything other assumption. It's just quite painful, even if my hands look normal. Please keep in mind that as frustrating as it is for you to deal with my RA, it is more so for me. RA typically means some losses for me, whether it is activities I enjoy, my job, my ability to do some of the things I found simple before. To me it may seem like I've lost my identity. Typically, people with chronic diseases, especially the newly diagnosed, go through the five stages of grief. Even those who have had RA a long time may go through the stages many times after their initial acceptance of RA. Do not assume I'm " just depressed " . Depression does go hand in hand with chronic diseases whether due to the unrelenting pain or stress or any other number of reasons. I don't need to " get out more " and expect it to make me always feel better. Sometimes that itself can lead to depression if I am facing that I can't do as much when I go out. Also please don't try to convince me that changing my diet will " cure " me. Recall that I said RA is incurable. Changing my diet may help with symptoms but it doesn't help everyone. Also, I don't need to be told I need more exercise. I'd like to be able to exercise more but may not be able to. That is frustrating enough. I don't need to hear from others that I'm not doing enough. --------------------------------- Stay in the know. Pulse on the new .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 EXCELLENT...... Ebony <stillbreathing29@...> wrote: Amen!! Ebony > > Subject: What RA is Like: A Letter for Family and Friends > > It is possible to walk to the park one day and be unable to do so > another day. The reverse is also true. Some days just moving around > the house is hard enough. > > Some days I need splints, a cane, ACE wraps, or even a wheelchair. > Other days I don't. Just because I don't always need those helps, > doesn't mean I'm faking it. > > My pain can travel from joint to joint from day to day or in fact, > hour to hour. > > I sometimes need a handicapped spot. I don't like it. But, I need > it. I may look healthy enough that I don't need it but walking out > of the store, I will likely be having problems walking. > > The medicines I take may have nasty side effects. I know this. I > don't need reminders of this from someone who doesn't live in my body > and feel my pain. I don't enjoy taking the medications but I have a > disease that needs to be medicated. > > Don't lecture me about the addictive nature of pain medications. I > know the risks. And don't judge me for using pain medications. It > doesn't mean I am weak. It means I have pain. If it is a choice > between pain medicines allowing me to live a more normal life and not > taking them out of fear, I choose having a more normal life. > > Standing, sitting, walking, and laying can all be painful. Life is > unfortunately painful. I have pain, swelling, limited energy, joints > that don't move right and other symptoms. Sometimes, I'm grumpy > because of this. I try not to be but sometimes it comes out despite > my attempts to be happy and nice. In addition to the pain and other > symptoms, I may be feverish, feel tired, or even have joints that > don't look " normal " . This is all due to RA. > > Please don't suggest " cures " . RA has no cure (at least now). So, I > have it, it is ncurable. Live with it.I do. I trust my doctor and > the treatment plan we've worked out between us, so please don't try > to convince me you know a person who " cured " themselves with diet, > supplements etc. It may have helped them or it may not have. It > could just be the cyclical nature of RA that fools them into thinking > they've been " cured " . > > If you've ever broken a bone, think of that pain and magnify it. > Then imagine all over your body. That's how I feel at times. > > When I travel with you, please understand that for my health, I may > need to have frequent stretch breaks. I'm not doing it to slow our > trip down. I don't take joy in having a hard time getting moving > after sitting for awhile. Don't hassle me over it. > > Don't assume when you hear the word " arthritis " that I mean > osteoarthritis, which is what most people think of when hearing > arthritis. Most people associate the word with the wear and tear > arthritis of aging. I may have OA as well which is that very type. > But, I have rheumatoid arthritis, which is an auto-immune disease > that causes my body to attack itself. I'm not too young for either. > Infants get RA as well as adults. Unfortunately, OA is not just a > disease on its own; it can come as a secondary disease to RA. So, I'm > not too young for arthritis, please don't tell me I am. And if you > still think I am, well, my body and doctors say different so I'm > going to listen to them, not you. > > I may need to rest more often than most people. It's not that I'm > lazy. It's that RA causes fatigue. And that fatigue can come and go > or be persistent. Imagine having the flu all of the time. > > I may not have " just " RA. There are many other diseases that can go > along with it. Those diseases also take their toll on me with > symptoms, medications and problems. > > I don't enjoy turning down certain activities due to my RA. I may > not always turn that down; it is just that particular time may be a > bad time for me. Don't assume I'll always turn things down and stop > asking me. That makes me feel so left out. But also if I do say > no, don't try to make me feel guilty. And if I say yes, but have to > change my mind later, please don't be angry. I don't like doing that > but sometimes despite my best planning; I just can't make my body > cooperate. > > There are things I can do that I also enjoy doing that may look like > a struggle to you. Please don't try to " protect " me by taking things > from me or stopping me from doing something. If I'm doing something > and not asking for help, it is because I am ok doing that. I'll > likely ask for help if I need it. But also know that I may be too > proud or stubborn to ask for help too. If you wish to help, don't > just take over. Ask if you can help. If I say yes, ask what the > best way to help me will be. If I say no please don't > be offended, it is likely something that I may struggle with but > gives me pleasure to do. (This doesn't apply to spouses and friends > who have known you for long enough to have worked out non-verbal > clues of needing help.) > > Just because I look healt> I may need to rest more often than most people. It's not that I'm > lazy. It's that RA causes fatigue. And that fatigue can come and go > or be persistent. Imagine having the flu all of the time. > > I may not have " just " RA. There are many other diseases that can go > along with it. Those diseases also take their toll on me with > symptoms, medications and problems. > > I don't enjoy turning down certain activities due to my RA. I may > not always turn that down; it is just that particular time may be a > bad time for me. Don't assume I'll always turn things down and stop > asking me. That makes me feel so left out. But also if I do say > no, don't try to make me feel guilty. And if I say yes, but have to > change my mind later, please don't be angry. I don't like doing that > but sometimes despite my best planning; I just can't make my body > cooperate. > > There are things I can do that I also enjoy doing that may look like > a struggle to you. Please don't try to " protect " me by taking things > from me or stopping me from doing something. If I'm doing something > and not asking for help, it is because I am ok doing that. I'll > likely ask for help if I need it. But also know that I may be too > proud or stubborn to ask for help too. If you wish to help, don't > just take over. Ask if you can help. If I say yes, ask what the > best way to help me will be. If I say no please don't > be offended, it is likely something that I may struggle with but > gives me pleasure to do. (This doesn't apply to spouses and friends > who have known you for long enough to have worked out non-verbal > clues of needing help.) > > Just because I look healthy, doesn't mean I am. RA is in many ways > an invisible illness. Normally, it takes many years for the effects > of RA to be seen visually. Even those who have had RA for many years > may look healthy. > > Please do not think it is funny to force me to shake hands and then > use a crushing grip. It's not funny and it's quite painful to be > honest. Also please don't assume because I don't shake hands that > I'm a snob or anything other assumption. It's just quite painful, > even if my hands look normal. > > Please keep in mind that as frustrating as it is for you to deal with > my RA, it is more so for me. RA typically means some losses for me, > whether it is activities I enjoy, my job, my ability to do some of > the things I found simple before. To me it may seem like I've lost > my identity. Typically, people with chronic diseases, especially the > newly diagnosed, go through the five stages of grief. Even those who > have had RA a long time may go through the stages many times after > their initial acceptance of RA. > > Do not assume I'm " just depressed " . Depression does go hand in hand > with chronic diseases whether due to the unrelenting pain or stress > or any other number of reasons. I don't need to " get out more " and > expect it to make me always feel better. Sometimes that itself can > lead to depression if I am facing that I can't do as much when I go > out. > > Also please don't try to convince me that changing my diet > will " cure " me. Recall that I said RA is incurable. Changing my diet > may help with symptoms but it doesn't help everyone. > > Also, I don't need to be told I need more exercise. I'd like to be > able to exercise more but may not be able to. That is frustrating > enough. I don't need to hear from others that I'm not doing enough. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 I really liked that letter - said it all - I hope that it will help some of our newbies, and even some of us oldies, to let our friends and family know what it is like to live with RA. Kathe in CA --- b_hovey1 <ehovey4@...> wrote: > Here is the Family Letter that I have, I have saved > in my word > documents for future reference or reminder. I > received it from one > of the websites on RA: > > Subject: What RA is Like: A Letter for Family and > Friends > > It is possible to walk to the park one day and be > unable to do so > another day. The reverse is also true. Some days > just moving around > the house is hard enough. > > Some days I need splints, a cane, ACE wraps, or even > a wheelchair. > Other days I don't. Just because I don't always > need those helps, > doesn't mean I'm faking it. > > My pain can travel from joint to joint from day to > day or in fact, > hour to hour. > > I sometimes need a handicapped spot. I don't like > it. But, I need > it. I may look healthy enough that I don't need it > but walking out > of the store, I will likely be having problems > walking. > > The medicines I take may have nasty side effects. I > know this. I > don't need reminders of this from someone who > doesn't live in my body > and feel my pain. I don't enjoy taking the > medications but I have a > disease that needs to be medicated. > > Don't lecture me about the addictive nature of pain > medications. I > know the risks. And don't judge me for using pain > medications. It > doesn't mean I am weak. It means I have pain. If > it is a choice > between pain medicines allowing me to live a more > normal life and not > taking them out of fear, I choose having a more > normal life. > > Standing, sitting, walking, and laying can all be > painful. Life is > unfortunately painful. I have pain, swelling, > limited energy, joints > that don't move right and other symptoms. > Sometimes, I'm grumpy > because of this. I try not to be but sometimes it > comes out despite > my attempts to be happy and nice. In addition to > the pain and other > symptoms, I may be feverish, feel tired, or even > have joints that > don't look " normal " . This is all due to RA. > > Please don't suggest " cures " . RA has no cure (at > least now). So, I > have it, it is ncurable. Live with it.I do. I > trust my doctor and > the treatment plan we've worked out between us, so > please don't try > to convince me you know a person who " cured " > themselves with diet, > supplements etc. It may have helped them or it may > not have. It > could just be the cyclical nature of RA that fools > them into thinking > they've been " cured " . > > If you've ever broken a bone, think of that pain and > magnify it. > Then imagine all over your body. That's how I feel > at times. > > When I travel with you, please understand that for > my health, I may > need to have frequent stretch breaks. I'm not doing > it to slow our > trip down. I don't take joy in having a hard time > getting moving > after sitting for awhile. Don't hassle me over it. > > Don't assume when you hear the word " arthritis " that > I mean > osteoarthritis, which is what most people think of > when hearing > arthritis. Most people associate the word with the > wear and tear > arthritis of aging. I may have OA as well which is > that very type. > But, I have rheumatoid arthritis, which is an > auto-immune disease > that causes my body to attack itself. I'm not too > young for either. > Infants get RA as well as adults. Unfortunately, OA > is not just a > disease on its own; it can come as a secondary > disease to RA. So, I'm > not too young for arthritis, please don't tell me I > am. And if you > still think I am, well, my body and doctors say > different so I'm > going to listen to them, not you. > > I may need to rest more often than most people. > It's not that I'm > lazy. It's that RA causes fatigue. And that > fatigue can come and go > or be persistent. Imagine having the flu all of > the time. > > I may not have " just " RA. There are many other > diseases that can go > along with it. Those diseases also take their toll > on me with > symptoms, medications and problems. > > I don't enjoy turning down certain activities due to > my RA. I may > not always turn that down; it is just that > particular time may be a > bad time for me. Don't assume I'll always turn > things down and stop > asking me. That makes me feel so left out. But > also if I do say > no, don't try to make me feel guilty. And if I say > yes, but have to > change my mind later, please don't be angry. I > don't like doing that > but sometimes despite my best planning; I just can't > make my body > cooperate. > > There are things I can do that I also enjoy doing > that may look like > a struggle to you. Please don't try to " protect " me > by taking things > from me or stopping me from doing something. If I'm > doing something > and not asking for help, it is because I am ok doing > that. I'll > likely ask for help if I need it. But also know > that I may be too > proud or stubborn to ask for help too. If you wish > to help, don't > just take over. Ask if you can help. If I say yes, > ask what the > best way to help me will be. If I say no please > don't > be offended, it is likely something that I may > struggle with but > gives me pleasure to do. (This doesn't apply to > spouses and friends > who have known you for long enough to have worked > out non-verbal > clues of needing help.) > > Just because I look healthy, doesn't mean I am. RA > is in many ways > an invisible illness. Normally, it takes many years > for the effects > of RA to be seen visually. Even those who have had > RA for many years > may look healthy. > > Please do not think it is funny to force me to shake > hands and then > use a crushing grip. It's not funny and it's quite > painful to be > honest. Also please don't assume because I don't > shake hands that > I'm a snob or anything other assumption. It's just > quite painful, > even if my hands look normal. > > Please keep in mind that as frustrating as it is for > you to deal with > my RA, it is more so for me. RA typically means > some losses for me, > whether it is activities I enjoy, my job, my ability > to do some of > the things I found simple before. To me it may seem > like I've lost > my identity. Typically, people with chronic > diseases, especially the > newly diagnosed, go through the five stages of > grief. Even those who > have had RA a long time may go through the stages > many times after > their initial acceptance of RA. > > Do not assume I'm " just depressed " . Depression does > go hand in hand > with chronic diseases whether due to the unrelenting > pain or stress > or any other number of reasons. I don't need to > " get out more " and > expect it to make me always feel better. Sometimes > that itself can > lead to depression if I am facing that I can't do as > much when I go > out. > > Also please don't try to convince me that changing > my diet > will " cure " me. Recall that I said RA is incurable. > Changing my diet > may help with symptoms but it doesn't help everyone. > > Also, I don't need to be told I need more exercise. > I'd like to be > able to exercise more but may not be able to. That > is frustrating > enough. I don't need to hear from others that I'm > not doing enough. > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 I liked the letter. I wish there was something for employers, I just recently lost my job due to they put me on a job where I Stand 8 hrs instead of sitting, I can not stand that long without swelling and barley able to walk. They said it was their right to change my job, and I would not be able to bring a chair over to my area due to it was unfair to the other employees and I need to be a adult and suck it up. Well I end up taking a chair by my area and the fired me due to I can not follow rules, like an adult. Sherry -- What RA is Like: A Letter for Family and > Friends > > It is possible to walk to the park one day and be > unable to do so > another day. The reverse is also true. Some days > just moving around > the house is hard enough. > > Some days I need splints, a cane, ACE wraps, or even > a wheelchair. > Other days I don't. Just because I don't always > need those helps, > doesn't mean I'm faking it. > > My pain can travel from joint to joint from day to > day or in fact, > hour to hour. > > I sometimes need a handicapped spot. I don't like > it. But, I need > it. I may look healthy enough that I don't need it > but walking out > of the store, I will likely be having problems > walking. > > The medicines I take may have nasty side effects. I > know this. I > don't need reminders of this from someone who > doesn't live in my body > and feel my pain. I don't enjoy taking the > medications but I have a > disease that needs to be medicated. > > Don't lecture me about the addictive nature of pain > medications. I > know the risks. And don't judge me for using pain > medications. It > doesn't mean I am weak. It means I have pain. If > it is a choice > between pain medicines allowing me to live a more > normal life and not > taking them out of fear, I choose having a more > normal life. > > Standing, sitting, walking, and laying can all be > painful. Life is > unfortunately painful. I have pain, swelling, > limited energy, joints > that don't move right and other symptoms. > Sometimes, I'm grumpy > because of this. I try not to be but sometimes it > comes out despite > my attempts to be happy and nice. In addition to > the pain and other > symptoms, I may be feverish, feel tired, or even > have joints that > don't look " normal " . This is all due to RA. > > Please don't suggest " cures " . RA has no cure (at > least now). So, I > have it, it is ncurable. Live with it.I do. I > trust my doctor and > the treatment plan we've worked out between us, so > please don't try > to convince me you know a person who " cured " > themselves with diet, > supplements etc. It may have helped them or it may > not have. It > could just be the cyclical nature of RA that fools > them into thinking > they've been " cured " . > > If you've ever broken a bone, think of that pain and > magnify it. > Then imagine all over your body. That's how I feel > at times. > > When I travel with you, please understand that for > my health, I may > need to have frequent stretch breaks. I'm not doing > it to slow our > trip down. I don't take joy in having a hard time > getting moving > after sitting for awhile. Don't hassle me over it. > > Don't assume when you hear the word " arthritis " that > I mean > osteoarthritis, which is what most people think of > when hearing > arthritis. Most people associate the word with the > wear and tear > arthritis of aging. I may have OA as well which is > that very type. > But, I have rheumatoid arthritis, which is an > auto-immune disease > that causes my body to attack itself. I'm not too > young for either. > Infants get RA as well as adults. Unfortunately, OA > is not just a > disease on its own; it can come as a secondary > disease to RA. So, I'm > not too young for arthritis, please don't tell me I > am. And if you > still think I am, well, my body and doctors say > different so I'm > going to listen to them, not you. > > I may need to rest more often than most people. > It's not that I'm > lazy. It's that RA causes fatigue. And that > fatigue can come and go > or be persistent. Imagine having the flu all of > the time. > > I may not have " just " RA. There are many other > diseases that can go > along with it. Those diseases also take their toll > on me with > symptoms, medications and problems. > > I don't enjoy turning down certain activities due to > my RA. I may > not always turn that down; it is just that > particular time may be a > bad time for me. Don't assume I'll always turn > things down and stop > asking me. That makes me feel so left out. But > also if I do say > no, don't try to make me feel guilty. And if I say > yes, but have to > change my mind later, please don't be angry. I > don't like doing that > but sometimes despite my best planning; I just can't > make my body > cooperate. > > There are things I can do that I also enjoy doing > that may look like > a struggle to you. Please don't try to " protect " me > by taking things > from me or stopping me from doing something. If I'm > doing something > and not asking for help, it is because I am ok doing > that. I'll > likely ask for help if I need it. But also know > that I may be too > proud or stubborn to ask for help too. If you wish > to help, don't > just take over. Ask if you can help. If I say yes, > ask what the > best way to help me will be. If I say no please > don't > be offended, it is likely something that I may > struggle with but > gives me pleasure to do. (This doesn't apply to > spouses and friends > who have known you for long enough to have worked > out non-verbal > clues of needing help.) > > Just because I look healthy, doesn't mean I am. RA > is in many ways > an invisible illness. Normally, it takes many years > for the effects > of RA to be seen visually. Even those who have had > RA for many years > may look healthy. > > Please do not think it is funny to force me to shake > hands and then > use a crushing grip. It's not funny and it's quite > painful to be > honest. Also please don't assume because I don't > shake hands that > I'm a snob or anything other assumption. It's just > quite painful, > even if my hands look normal. > > Please keep in mind that as frustrating as it is for > you to deal with > my RA, it is more so for me. RA typically means > some losses for me, > whether it is activities I enjoy, my job, my ability > to do some of > the things I found simple before. To me it may seem > like I've lost > my identity. Typically, people with chronic > diseases, especially the > newly diagnosed, go through the five stages of > grief. Even those who > have had RA a long time may go through the stages > many times after > their initial acceptance of RA. > > Do not assume I'm " just depressed " . Depression does > go hand in hand > with chronic diseases whether due to the unrelenting > pain or stress > or any other number of reasons. I don't need to > " get out more " and > expect it to make me always feel better. Sometimes > that itself can > lead to depression if I am facing that I can't do as > much when I go > out. > > Also please don't try to convince me that changing > my diet > will " cure " me. Recall that I said RA is incurable. > Changing my diet > may help with symptoms but it doesn't help everyone. > > Also, I don't need to be told I need more exercise. > I'd like to be > able to exercise more but may not be able to. That > is frustrating > enough. I don't need to hear from others that I'm > not doing enough. > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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