Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 ...I am sorry you are feeling so low and in pain...I am really sorry your family isnt helping.... maybe you could ask your mom or sister to go to a doctors appointment with you...I know my family did not get it until they went to a doctors appointment with me...just a suggestion as I dont know the paticulars...I do know Debs has this great party idea when you are really depressed...it goes something like this: Any time you or anyone else for that matter, wants a pity party, I am the gal to contact. Living here in South Florida, I have an endless supply of cabana boys who will fan us with large palm fronds, bring us cool tropical drinks and basically just be at our beckon call! Sounds pretty neat, huh? No docs, no prescriptions, no insurance companies, no spouses or significant others, no children, just us and creaky old bones with these young nubile perfectly tanned cabana boys! They sure make a party come alive. Approximately 2 hours after everyone arrives, we have our limbo contest and then we wrap it all up with a conga line dance! Oh those were the days!!!!!! Now this fantasy is sure to take all that ails you away! So everyday here is a cheese and whine party for someone and we are all more than happy to either host or sometimes need to be the honoree! This will ALWAYS be your safe place where no one judges you or criticizes you. This disease stinks and ONLY we know how much air freshener is appropriate. So, folks, the WELCOME sign is lit and open for business! Make it a good one and take care of YOU! I dont think Debs will mind me copying and sending it to you...this week I was lower than low and it gave me a great boost....hope you get to feeling better...and this group is always good at helping you make a start at the upward journey...hugs from the Okie...kathi --- klc youlater <castaway41@...> wrote: > I just needed to write to my new found family of > support. > > I am feeling lonely and I am in alot of pain > tonight. It seems that when the > pain gets real bad, it forces me to see what > supports I dont have in my life > - (family) and that causes this emotional upset to > kick in along with the > pain. > > I have no one to talk to right now and so I decided > I would just write down > what I am feeling here. My Mom cant/doesnt want to > be there for me & knows > how bad off I am right now medically. I miss/want a > relationship with her & > I want to call her when I am in pain & cry. But she > doesnt return my calls & > my therapist reminds me to try to stop setting > myself up for that which isnt > there. I've called my sister too but for what ever > reason, she doesnt call > me back. I dont know if they are afraid or what. It > doesnt matter I guess - > I just get lonely when I am hurting physically and > it slaps me in the face > as to how alone I really am. > > I was in bed and trying to read a book but it hurt > my wrist too much to turn > the pages. my shoulder hurts so bad right now & my > feet are getting stabbing > pains in them tonight. I just got out of bed & went > to talk to my husband. I > cried about how I want to do things in my yard and I > cant even read a book > tonight and how much I want the support of my mom > and sisters. > He did listen to me and then said he was going out > for a ride on his > motorcycle. So I feel that my pain and reaching out > for support sends people > in my life running. > > I wish I could be the healthy pain free wife , > daughter and sister they seem > to all need me to be, but I am powerless over that > right now. > > So, I am writing here - you guys are all I have with > this. > > Blessings, > C. > > > _________________________________________________________________ > Join the world’s largest e-mail service with MSN > Hotmail. > http://www.hotmail.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Dear ...I am so sorry you are so alone. I know it hurts, My mom really reaches out to me in many ways, but when it comes to this HARD stuff, she doesn't fully get it. I love my Dad, but if I say ONE word about not feeling well, or having a rough time, he always tells me about all the people he knows who have SERIOUS problems. : ( I don't even try much anymore, and it does hurt. I love them, and need them. My sister is the same...she rarely calls and seems to just emotionally evaporate if I mention the hard stuff. In " real " life, I've never been a 'whiner'...maybe that's the problem...they say the " squeaky wheel gets the grease. " But after being shot down or dismissed or ignored for decades, it's hard to try. Sometimes I get thinking that they just can't tolerate the " freak " - me, in their " normal " family. But I'm not a freak. I try HARD. I've been through A LOT, and I'm sorry if that bothers their equilibrium. Yikes...I'm sorry if I got going a little much here. I just know it hurts, , and I am really sorry. Much Love & Understanding.... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Hello to you both.. my heart hurts for you both and anyone who is left alone in this disease…as I read your emails I listen to the words that hurt and recall my own journey of lost family members and friends…my only advantage is that my husband and I were both struck within 10 days of each other to sero negative RA…we have struggled for two years together….I often told him that I would not wish to be in this alone for it is so hard to describe the pains and the emotional debilitation as this thing courses through our bodies.. I was often told I don’t deal well with pain…those words hurt….and on top of carrying the fear of the disease and the struggle to cope is the wounds from our family and friends…and that added weight is not healthy….this group never says an unkind word…and I value it deeply… I removed myself from people who did not emotionally support me…I truly believed they did not deserve my reserve of energy and I turned to the groups.. they have been my mainstay for support knowledge and when the despair hits… the lonely nights are indeed something that encompasses the pains….i determined to make sure I no longer had the loneliness and pain of the nights and I asked my doctor for IMOVANE….it guarantees me 6-7 hours of sleep with no hangover effect….it helps restore my body also…I did not like the thought of taking a sleeping pill…but it has replenished my sleep which one so desperately needs….and reduces the pain killers needed… the thoughts linger and I question why the lack of support from my family..and I realized I could not be the gregarious person they needed….and so I looked at them to see how they themselves had diminished without my being me so to speak..i consider it their loss…as well as mine..…and I carry the pains gently but know down deeply that the problem is not with me….do not look at yourself….i found this group who accepts my thoughts without judgement and answers the medical concerns…and there are truer virtual hugs….i accept the loss of my family as I endeavour to get well…and I guess rather than concentrate on the fact that both my husband and I lost the ability together to not even holds any longer I concentrate on my true friends in the group…. I don’t believe my words will be able to embrace your pains….for a tangible hug from your family members would be wonderful…. I see it as their inability to accept a truth…and if people cannot nourish you in some way…they are truly to be pitied… I hope you maybe consider something to help you sleep…the imovane is a class of non benzodiazepine..this was discussed at great length before I determined to take it…without that guarantee of sleep I would be a mess…now I know my pain goes away at ten oclock at night and I am awake at 600…both my husband and I http://www.biopsychiatry.com/zopiclone.html I love my family too, however support is a two way road…I have always been them for them…but now realize I can no longer be there for them…my energy goes to my disease and to those capable of a kind word… Thank you group for all you have given me….for and Tess I do hurt for you also…. embraces to your hurts. Sincerely …and may you both have a pain free moment within your soul… Re: [ ] a lonely night Dear ...I am so sorry you are so alone. I know it hurts, My mom really reaches out to me in many ways, but when it comes to this HARD stuff, she doesn't fully get it. I love my Dad, but if I say ONE word about not feeling well, or having a rough time, he always tells me about all the people he knows who have SERIOUS problems. : ( I don't even try much anymore, and it does hurt. I love them, and need them. My sister is the same...she rarely calls and seems to just emotionally evaporate if I mention the hard stuff. In " real " life, I've never been a 'whiner'...maybe that's the problem...they say the " squeaky wheel gets the grease. " But after being shot down or dismissed or ignored for decades, it's hard to try. Sometimes I get thinking that they just can't tolerate the " freak " - me, in their " normal " family. But I'm not a freak. I try HARD. I've been through A LOT, and I'm sorry if that bothers their equilibrium. Yikes...I'm sorry if I got going a little much here. I just know it hurts, , and I am really sorry. Much Love & Understanding.... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 << So I feel that my pain and reaching out for support sends people in my life running.>> Dearest , I'm so sorry you are feeling down. When I get in a bad flare I feel the same way, like nobody understands or wants to understand, and I wonder why the Lord is allowing me to have to face this. I've decided that different loved ones are capable of different levels of support, and that's just how they are. It really has no bearing on whether or not they love you. My brother is like that, he just ignores it. I don't know if he thinks I'm making it up or exaggerating, or if he just doesn't care. More likely, though, is that since he can't do anything about it he just doesn't know what to say. Men especially like to " fix " problems, and when they can't they just don't know what else to do. That's probably why your husband left, although I'm sure that hurt you a lot. My husband has been really good, but I know it is wearing thin. The best thing about this group is that you're NOT alone, we all love and care about you and know just what you're going through. Each of us has experienced the pain and the loneliness, so accept our (((((((((cyberhugs)))))))) and never hesitate to share your frustrations. Love, Carol [ ] a lonely night I just needed to write to my new found family of support. I am feeling lonely and I am in alot of pain tonight. It seems that when the pain gets real bad, it forces me to see what supports I dont have in my life - (family) and that causes this emotional upset to kick in along with the pain. I have no one to talk to right now and so I decided I would just write down what I am feeling here. My Mom cant/doesnt want to be there for me & knows how bad off I am right now medically. I miss/want a relationship with her & I want to call her when I am in pain & cry. But she doesnt return my calls & my therapist reminds me to try to stop setting myself up for that which isnt there. I've called my sister too but for what ever reason, she doesnt call me back. I dont know if they are afraid or what. It doesnt matter I guess - I just get lonely when I am hurting physically and it slaps me in the face as to how alone I really am. I was in bed and trying to read a book but it hurt my wrist too much to turn the pages. my shoulder hurts so bad right now & my feet are getting stabbing pains in them tonight. I just got out of bed & went to talk to my husband. I cried about how I want to do things in my yard and I cant even read a book tonight and how much I want the support of my mom and sisters. He did listen to me and then said he was going out for a ride on his motorcycle. So I feel that my pain and reaching out for support sends people in my life running. I wish I could be the healthy pain free wife , daughter and sister they seem to all need me to be, but I am powerless over that right now. So, I am writing here - you guys are all I have with this. Blessings, C. _________________________________________________________________ Join the world's largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 << This disease stinks and ONLY we know how much air freshener is appropriate.>> What a great line!!!! Carol Re: [ ] a lonely night ...I am sorry you are feeling so low and in pain...I am really sorry your family isnt helping.... maybe you could ask your mom or sister to go to a doctors appointment with you...I know my family did not get it until they went to a doctors appointment with me...just a suggestion as I dont know the paticulars...I do know Debs has this great party idea when you are really depressed...it goes something like this: Any time you or anyone else for that matter, wants a pity party, I am the gal to contact. Living here in South Florida, I have an endless supply of cabana boys who will fan us with large palm fronds, bring us cool tropical drinks and basically just be at our beckon call! Sounds pretty neat, huh? No docs, no prescriptions, no insurance companies, no spouses or significant others, no children, just us and creaky old bones with these young nubile perfectly tanned cabana boys! They sure make a party come alive. Approximately 2 hours after everyone arrives, we have our limbo contest and then we wrap it all up with a conga line dance! Oh those were the days!!!!!! Now this fantasy is sure to take all that ails you away! So everyday here is a cheese and whine party for someone and we are all more than happy to either host or sometimes need to be the honoree! This will ALWAYS be your safe place where no one judges you or criticizes you. This disease stinks and ONLY we know how much air freshener is appropriate. So, folks, the WELCOME sign is lit and open for business! Make it a good one and take care of YOU! I dont think Debs will mind me copying and sending it to you...this week I was lower than low and it gave me a great boost....hope you get to feeling better...and this group is always good at helping you make a start at the upward journey...hugs from the Okie...kathi --- klc youlater <castaway41@...> wrote: > I just needed to write to my new found family of > support. > > I am feeling lonely and I am in alot of pain > tonight. It seems that when the > pain gets real bad, it forces me to see what > supports I dont have in my life > - (family) and that causes this emotional upset to > kick in along with the > pain. > > I have no one to talk to right now and so I decided > I would just write down > what I am feeling here. My Mom cant/doesnt want to > be there for me & knows > how bad off I am right now medically. I miss/want a > relationship with her & > I want to call her when I am in pain & cry. But she > doesnt return my calls & > my therapist reminds me to try to stop setting > myself up for that which isnt > there. I've called my sister too but for what ever > reason, she doesnt call > me back. I dont know if they are afraid or what. It > doesnt matter I guess - > I just get lonely when I am hurting physically and > it slaps me in the face > as to how alone I really am. > > I was in bed and trying to read a book but it hurt > my wrist too much to turn > the pages. my shoulder hurts so bad right now & my > feet are getting stabbing > pains in them tonight. I just got out of bed & went > to talk to my husband. I > cried about how I want to do things in my yard and I > cant even read a book > tonight and how much I want the support of my mom > and sisters. > He did listen to me and then said he was going out > for a ride on his > motorcycle. So I feel that my pain and reaching out > for support sends people > in my life running. > > I wish I could be the healthy pain free wife , > daughter and sister they seem > to all need me to be, but I am powerless over that > right now. > > So, I am writing here - you guys are all I have with > this. > > Blessings, > C. > > > _________________________________________________________________ > Join the worlds largest e-mail service with MSN > Hotmail. > http://www.hotmail.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 The humor in this was so healing!! I am so grateful to be able to share a laugh with you!! The " pity party " sounds awesome! I'd probably be on of the ones that wore out their welcome and didnt know when to leave! LOL!! Thanks for upifting my spirits!! Blessings, C. >From: Kathi in OK <iamladybird@...> >Reply- > >Subject: Re: [ ] a lonely night >Date: Sat, 1 Jun 2002 19:44:44 -0700 (PDT) > >...I am sorry you are feeling so low and in >pain...I am really sorry your family isnt helping.... >maybe you could ask your mom or sister to go to a >doctors appointment with you...I know my family did >not get it until they went to a doctors appointment >with me...just a suggestion as I dont know the >paticulars...I do know Debs has this great party idea >when you are really depressed...it goes something like >this: Any time you or anyone else for that >matter, wants a pity party, I am the gal >to contact. Living here in South Florida, I have an >endless supply of cabana >boys who will fan us with large palm fronds, bring us >cool tropical drinks >and basically just be at our beckon call! Sounds >pretty neat, huh? No docs, >no prescriptions, no insurance companies, no spouses >or significant others, >no children, just us and creaky old bones with these >young nubile perfectly >tanned cabana boys! They sure make a party come >alive. Approximately 2 >hours after everyone arrives, we have our limbo >contest and then we wrap it >all up with a conga line dance! Oh those were the >days!!!!!! Now this >fantasy is sure to take all that ails you away! > >So everyday here is a cheese and whine party for >someone and we are all more >than happy to either host or sometimes need to be the >honoree! > >This will ALWAYS be your safe place where no one >judges you or criticizes >you. This disease stinks and ONLY we know how much >air freshener is >appropriate. > >So, folks, the WELCOME sign is lit and open for >business! > >Make it a good one and take care of YOU! >I dont think Debs will mind me copying and sending it >to you...this week I was lower than low and it gave me >a great boost....hope you get to feeling better...and >this group is always good at helping you make a start >at the upward journey...hugs from the Okie...kathi > > > > > > >--- klc youlater <castaway41@...> wrote: > > I just needed to write to my new found family of > > support. > > > > I am feeling lonely and I am in alot of pain > > tonight. It seems that when the > > pain gets real bad, it forces me to see what > > supports I dont have in my life > > - (family) and that causes this emotional upset to > > kick in along with the > > pain. > > > > I have no one to talk to right now and so I decided > > I would just write down > > what I am feeling here. My Mom cant/doesnt want to > > be there for me & knows > > how bad off I am right now medically. I miss/want a > > relationship with her & > > I want to call her when I am in pain & cry. But she > > doesnt return my calls & > > my therapist reminds me to try to stop setting > > myself up for that which isnt > > there. I've called my sister too but for what ever > > reason, she doesnt call > > me back. I dont know if they are afraid or what. It > > doesnt matter I guess - > > I just get lonely when I am hurting physically and > > it slaps me in the face > > as to how alone I really am. > > > > I was in bed and trying to read a book but it hurt > > my wrist too much to turn > > the pages. my shoulder hurts so bad right now & my > > feet are getting stabbing > > pains in them tonight. I just got out of bed & went > > to talk to my husband. I > > cried about how I want to do things in my yard and I > > cant even read a book > > tonight and how much I want the support of my mom > > and sisters. > > He did listen to me and then said he was going out > > for a ride on his > > motorcycle. So I feel that my pain and reaching out > > for support sends people > > in my life running. > > > > I wish I could be the healthy pain free wife , > > daughter and sister they seem > > to all need me to be, but I am powerless over that > > right now. > > > > So, I am writing here - you guys are all I have with > > this. > > > > Blessings, > > C. > > > > > > >_________________________________________________________________ > > Join the world’s largest e-mail service with MSN > > Hotmail. > > http://www.hotmail.com > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Dear Friends...I seem to be on a bit of an emotional roller-coaster. I feel ok, have my eyes on God, feel loved by many, then I sort of plummet. I am a little afraid of the surgery and all that goes with it, and the financial strain is depleting. But, I know I have MUCH to be grateful for, and that God will take care of my needs. I just have to keep my eyes on Him, and soak in the love & blessings around me. Hugs of Love to All... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 : I am so sorry that you had such a terrible night. Please remember that you are not alone. All of us have suffered one time or another as you are and we do understand. Sometimes, those closest to us, can't relate to the pain and at the same time they feel so helpless in not knowing what to say or do that they " run away " . It doesn't mean they don't care, it means they don't understand. For me, when times like this hit, I pray or write out my feelings. Prayer is a definite comfort and I've found by writing my feelings down, I can look back at them in a day or two and see how I felt and even sometimes understand why I feel that way. I found a scripture in Psalms that I have on fridge: Psalm 6:2: Have mercy on me O Lord; heal me; for my bones are vexed. Many times, I say that over and over, it doesn't stop the pain, but it seems to have a calming effect on me. I don't know what kind of meds you are on, maybe you need something stronger for the pain. Heat alternated with cold helps sometimes too. A friend of mine gave me a parafin bath kit for Christmas and it really helps soothe the pain. I will keep you in my thoughts and prayers and remember, you are not alone. We are all here for you. Blessings, Jan in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi Jan - I am on-line now and just got your lovely e-mail!! Thanks so so much! I pray alot too. I am not yet on any pain meds or any meds for my RA as I just got dx'd & referred to a rheumatologist who I see for the first time on 6/13. I want to garden so bad!! I pray that I will be able to get help and be able to do that once again. You are so kind to reach out to me. May God bless you & keep you in His care. Blessings, C. ~ Do not lose your inward peace for anything whatsoever, even if your whole world seems upset. --Saint Francis de Sales-- >From: burnettaljanb@... Reply- To: > Subject: Re: [ ] a lonely night Date: >Mon, 3 Jun 2002 18:22:44 EDT > >: I am so sorry that you had such a terrible night. Please remember >that you are not alone. All of us have suffered one time or another as you >are and we do understand. Sometimes, those closest to us, can't relate to >the pain and at the same time they feel so helpless in not knowing what to >say or do that they " run away " . It doesn't mean they don't care, it means >they don't understand. For me, when times like this hit, I pray or write >out my feelings. Prayer is a definite comfort and I've found by writing my >feelings down, I can look back at them in a day or two and see how I felt >and even sometimes understand why I feel that way. I found a scripture in >Psalms that I have on fridge: Psalm 6:2: Have mercy on me O Lord; heal me; >for my bones are vexed. Many times, I say that over and over, it doesn't >stop the pain, but it seems to have a calming effect on me. > >I don't know what kind of meds you are on, maybe you need something >stronger for the pain. Heat alternated with cold helps sometimes too. A >friend of mine gave me a parafin bath kit for Christmas and it really helps >soothe the pain. > >I will keep you in my thoughts and prayers and remember, you are not alone. >We are all here for you. > >Blessings, > >Jan in SC _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Thank you so much Carol for making me feel like I am not alone and for sending me the hugs I really need. You are such a gentle and caring soul and I am so glad that you are welcoming me into this group with open arms. I decided today I need to buy a walker. I dont want to but when I go out of the house, I really need one right now. You know what is bothering me? That my family (husband and others too) will think I am looking for sympathy! And yet why should I suffer in pain? I also am afraid that my husband is going to be sick of being married to an " old lady " as I am 42 and that maybe he'll leave me for someone healthy and that thought also keeps me from getting the walker I need. I could not survive alone. I know this pain is impacting our relationship as I am not the active woman he married. Yes, he married me in sickness and in health, but I feel in a way I am physically abandoning him because I am in chronic pain right now. So much to think about. Blessings, C. >From: " Carol " Reply->< > >Subject: RE: [ ] a lonely night >Date: Sun, 2 Jun 2002 13:20:20 -0400 > ><< So I feel that my pain and reaching out for support sends people in my >life running.>> > >Dearest , >I'm so sorry you are feeling down. When I get in a bad flare I feel the >same way, like nobody understands or wants to understand, and I wonder why >the Lord is allowing me to have to face this. I've decided that different >loved ones are capable of different levels of support, and that's just how >they are. It really has no bearing on whether or not they love you. My >brother is like that, he just ignores it. I don't know if he thinks I'm >making it up or exaggerating, or if he just doesn't care. More likely, >though, is that since he can't do anything about it he just doesn't know >what to say. Men especially like to " fix " problems, and when they can't >they just don't know what else to do. That's probably why your husband >left, although I'm sure that hurt you a lot. My husband has been really >good, but I know it is wearing thin. >The best thing about this group is that you're NOT alone, we all love and >care about you and know just what you're going through. Each of us has >experienced the pain and the loneliness, so accept our >(((((((((cyberhugs)))))))) and never hesitate to share your frustrations. >Love, >Carol > > [ ] a lonely night > >I just needed to write to my new found family of support. > >I am feeling lonely and I am in alot of pain tonight. It seems that when >the >pain gets real bad, it forces me to see what supports I dont have in my >life >- (family) and that causes this emotional upset to kick in along with the >pain. > >I have no one to talk to right now and so I decided I would just write down >what I am feeling here. My Mom cant/doesnt want to be there for me & knows >how bad off I am right now medically. I miss/want a relationship with her & >I want to call her when I am in pain & cry. But she doesnt return my calls > & >my therapist reminds me to try to stop setting myself up for that which >isnt >there. I've called my sister too but for what ever reason, she doesnt call >me back. I dont know if they are afraid or what. It doesnt matter I guess - >I just get lonely when I am hurting physically and it slaps me in the face >as to how alone I really am. > >I was in bed and trying to read a book but it hurt my wrist too much to >turn >the pages. my shoulder hurts so bad right now & my feet are getting >stabbing >pains in them tonight. I just got out of bed & went to talk to my husband. >I >cried about how I want to do things in my yard and I cant even read a book >tonight and how much I want the support of my mom and sisters. >He did listen to me and then said he was going out for a ride on his >motorcycle. So I feel that my pain and reaching out for support sends >people >in my life running. > >I wish I could be the healthy pain free wife , daughter and sister they >seem >to all need me to be, but I am powerless over that right now. > >So, I am writing here - you guys are all I have with this. > >Blessings, > C. > > >_________________________________________________________________ >Join the world's largest e-mail service with MSN Hotmail. >http://www.hotmail.com > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 , RA is not considered contagious and I find it curious that both you and your husband were diagnosed at the same time. Has anyone mentioned reactive arthritis? It is also called Reiter¹s Syndrome. Here¹s some information about it: http://www.health.wvu.edu/clinical/arthritis/reactive.htm Family support is a topic we¹ve often talked about. Some people just don¹t know what to say or do and say things without knowing they are hurting. http://www.kineretrx.com/patient/friends_and_family.jsp http://www.duq.edu/PT/RA/PandFEducation.html http://www.arthritis.org/resources/Relationships/SupportGroups/Intro.asp Hope you are having a pain free day. a On 6/2/02 9:39 AM, " Dot.Com " <dot.communicator@...> wrote: > Hello to you both.. > > > > my heart hurts for you both and anyone who is left alone in this > disease…as I read your emails I listen to the words that hurt and recall > my own journey of lost family members and friends…my only advantage is > that my husband and I were both struck within 10 days of each other to > sero negative RA…we have struggled for two years together….I often told > him that I would not wish to be in this alone for it is so hard to > describe the pains and the emotional debilitation as this thing courses > through our bodies.. > > > > I was often told I don’t deal well with pain…those words hurt….and on > top of carrying the fear of the disease and the struggle to cope is the > wounds from our family and friends…and that added weight is not > healthy….this group never says an unkind word…and I value it deeply… > > > > I removed myself from people who did not emotionally support me…I truly > believed they did not deserve my reserve of energy and I turned to the > groups.. > > they have been my mainstay for support knowledge and when the despair > hits… > > > > the lonely nights are indeed something that encompasses the pains….i > determined to make sure I no longer had the loneliness and pain of the > nights and I asked my doctor for IMOVANE….it guarantees me 6-7 hours of > sleep with no hangover effect….it helps restore my body also…I did not > like the thought of taking a sleeping pill…but it has replenished my > sleep which one so desperately needs….and reduces the pain killers > needed… > > > > the thoughts linger and I question why the lack of support from my > family..and I realized I could not be the gregarious person they > needed….and so I looked at them to see how they themselves had > diminished without my being me so to speak..i consider it their loss…as > well as mine..…and I carry the pains gently but know down deeply that > the problem is not with me….do not look at yourself….i found this group > who accepts my thoughts without judgement and answers the medical > concerns…and there are truer virtual hugs….i accept the loss of my > family as I endeavour to get well…and I guess rather than concentrate on > the fact that both my husband and I lost the ability together to not > even holds any longer I concentrate on my true friends in the group…. > > > > I don’t believe my words will be able to embrace your pains….for a > tangible hug from your family members would be wonderful…. > > > > I see it as their inability to accept a truth…and if people cannot > nourish you in some way…they are truly to be pitied… > > > > I hope you maybe consider something to help you sleep…the imovane is a > class of non benzodiazepine..this was discussed at great length before I > determined to take it…without that guarantee of sleep I would be a > mess…now I know my pain goes away at ten oclock at night and I am awake > at 600…both my husband and I > > > > http://www.biopsychiatry.com/zopiclone.html > > > > I love my family too, however support is a two way road…I have always > been them for them…but now realize I can no longer be there for them…my > energy goes to my disease and to those capable of a kind word… > > > > Thank you group for all you have given me….for and Tess I do hurt > for you also…. > > > > embraces to your hurts. > > Sincerely > > …and may you both have a pain free moment within your soul… Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 << I also am afraid that my husband is going to be sick of being married to an " old lady " as I am 42 and that maybe he'll leave me for someone healthy and that thought also keeps me from getting the walker I need. I could not survive alone. I know this pain is impacting our relationship as I am not the active woman he married. Yes, he married me in sickness and in health, but I feel in a way I am physically abandoning him because I am in chronic pain right now. So much to think about.?>> , we have a lot in common! That was my biggest fear a few months ago, and is still a fear for me. I've read that the first year with RA is the hardest, because you're looking for medications that will work for you. I was diagnosed in Feb, and it seems like the RA has become such a large part of my existence. I think my husband MUST be getting sick of hearing about it. I know my Mom seems to be. When you're first dealing with such a life-changing thing as RA, you need to be able to talk about it. That's why this group is so great. My husband has been very supportive thus far, though, and I really have no reason to feel like he would leave me. It's a groundless fear. If you think the walker would help, then by all means you should use it. Explain to him it isn't a permanent thing, just an aid until the rheumatologist finds medications that will control the disease. I hope you have a pain free day! Hugs, Carol [ ] a lonely night > >I just needed to write to my new found family of support. > >I am feeling lonely and I am in alot of pain tonight. It seems that when >the >pain gets real bad, it forces me to see what supports I dont have in my >life >- (family) and that causes this emotional upset to kick in along with the >pain. > >I have no one to talk to right now and so I decided I would just write down >what I am feeling here. My Mom cant/doesnt want to be there for me & knows >how bad off I am right now medically. I miss/want a relationship with her & >I want to call her when I am in pain & cry. But she doesnt return my calls > & >my therapist reminds me to try to stop setting myself up for that which >isnt >there. I've called my sister too but for what ever reason, she doesnt call >me back. I dont know if they are afraid or what. It doesnt matter I guess - >I just get lonely when I am hurting physically and it slaps me in the face >as to how alone I really am. > >I was in bed and trying to read a book but it hurt my wrist too much to >turn >the pages. my shoulder hurts so bad right now & my feet are getting >stabbing >pains in them tonight. I just got out of bed & went to talk to my husband. >I >cried about how I want to do things in my yard and I cant even read a book >tonight and how much I want the support of my mom and sisters. >He did listen to me and then said he was going out for a ride on his >motorcycle. So I feel that my pain and reaching out for support sends >people >in my life running. > >I wish I could be the healthy pain free wife , daughter and sister they >seem >to all need me to be, but I am powerless over that right now. > >So, I am writing here - you guys are all I have with this. > >Blessings, > C. > > >_________________________________________________________________ >Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi Carol - After I posted this, I ended up sharing all of these fears of mine with my husband last night. He was very supportive & told me he has no intention of doing anything but standing by me. I find this group helpful in so many different ways - often times I use it to vent first and then I find because I receive validation and support in return, it gives me the strength to take my concerns and address them in the areas of my life where I need to. That doesnt mean I always get the support I need/want " out there " but I am learning ways to resolve that internally. Blessings, C. >From: " Carol " Reply- Subject: RE: >[ ] a lonely night Date: Tue, 4 Jun 2002 09:06:23 -0400 > ><< I also am afraid that my husband is going to be sick of being married to >an " old lady " as I am 42 and that maybe he'll leave me for someone healthy >and that thought also keeps me from getting the walker I need. I could not >survive alone. I know this pain is impacting our relationship as I am not >the active woman he married. Yes, he married me in sickness and in health, >but I feel in a way I am physically abandoning him because I am in chronic >pain right now. So much to think about.?>> > >, we have a lot in common! That was my biggest fear a few months ago, >and is still a fear for me. I've read that the first year with RA is the >hardest, because you're looking for medications that will work for you. I >was diagnosed in Feb, and it seems like the RA has become such a large part >of my existence. I think my husband MUST be getting sick of hearing about >it. I know my Mom seems to be. When you're first dealing with such a >life-changing thing as RA, you need to be able to talk about it. That's why >this group is so great. > >My husband has been very supportive thus far, though, and I really have no >reason to feel like he would leave me. It's a groundless fear. If you think >the walker would help, then by all means you should use it. Explain to him >it isn't a permanent thing, just an aid until the rheumatologist finds >medications that will control the disease. > >I hope you have a pain free day! > >Hugs, Carol > > >[ ] a lonely night > >I just needed to write to my new found >family of support. > >I am feeling lonely and I am in alot of pain tonight. >It seems that when >the >pain gets real bad, it forces me to see what >supports I dont have in my >life >- (family) and that causes this emotional >upset to kick in along with the >pain. > >I have no one to talk to right >now and so I decided I would just write down >what I am feeling here. My >Mom cant/doesnt want to be there for me & knows >how bad off I am right now >medically. I miss/want a relationship with her & >I want to call her when I >am in pain & cry. But she doesnt return my calls > & >my therapist reminds >me to try to stop setting myself up for that which >isnt >there. I've >called my sister too but for what ever reason, she doesnt call >me back. I >dont know if they are afraid or what. It doesnt matter I guess - >I just >get lonely when I am hurting physically and it slaps me in the face >as to >how alone I really am. > >I was in bed and trying to read a book but it >hurt my wrist too much to >turn >the pages. my shoulder hurts so bad right >now & my feet are getting >stabbing >pains in them tonight. I just got out >of bed & went to talk to my husband. >I >cried about how I want to do >things in my yard and I cant even read a book >tonight and how much I want >the support of my mom and sisters. >He did listen to me and then said he >was going out for a ride on his >motorcycle. So I feel that my pain and >reaching out for support sends >people >in my life running. > >I wish I >could be the healthy pain free wife , daughter and sister they >seem >to >all need me to be, but I am powerless over that right now. > >So, I am >writing here - you guys are all I have with this. > >Blessings, > C. > > > >_________________________________________________________________ >Join >the world's largest e-mail service with MSN Hotmail. > >http://www.hotmail.com > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi there.. I appreciate the comment…I did not suggest it was contagious….i was speaking about the infection connection…we do not have reiter’s… http://www.ra-infection-connection.com/ explains the connection …it is a dissertation commentary that I understand but dare not try to summate…. We were both hit with a virus…because I have asthma the virus manifested in my body a tad differently than my husbands…we were not diagnosed at the time as they thought we both had MS…and both had MRI to rule out the MS…time went by in which our lives changed…. and two years later we both got our second flare on January 8th and we grow nodes on our hands feet wrists ankles knees…at the same time and if you read the theory behind the infection connection it holds great merit for us for treatment…and why this could have happened to us the way it did…also….my daughter exhibited initial symptoms,,,since that time she has developed some symptoms….the lady in the book also said that a virus swept through an office and within time 8 people had been diagnosed with carpal tunnel syndrome…there is also the story of the 17 rcmp officers who ate at the same place and were struck with a stapphoccocal(spelling) bacteria….11 of the 17 developed acute inflammatory arthritis…and never recovered… I won’t elaborate further as I don’t want to appear to be touting a book or the choice of DMARDS we were given based upon our personal situations….our blood work is all sero negative….it is not reiters…. But what has happened to my husband and myself carries weight to the infection connection and the mycoplasma theory .. I truly thank you for your input… Sincerely Re: [ ] a lonely night Importance: High , RA is not considered contagious and I find it curious that both you and your husband were diagnosed at the same time. Has anyone mentioned reactive arthritis? It is also called Reiter¹s Syndrome. Here¹s some information about it: http://www.health.wvu.edu/clinical/arthritis/reactive.htm Family support is a topic we¹ve often talked about. Some people just don¹t know what to say or do and say things without knowing they are hurting. http://www.kineretrx.com/patient/friends_and_family.jsp http://www.duq.edu/PT/RA/PandFEducation.html http://www.arthritis.org/resources/Relationships/SupportGroups/Intro.asp Hope you are having a pain free day. a On 6/2/02 9:39 AM, " Dot.Com " <dot.communicator@...> wrote: > Hello to you both.. > > > > my heart hurts for you both and anyone who is left alone in this > disease…as I read your emails I listen to the words that hurt and recall > my own journey of lost family members and friends…my only advantage is > that my husband and I were both struck within 10 days of each other to > sero negative RA…we have struggled for two years together….I often told > him that I would not wish to be in this alone for it is so hard to > describe the pains and the emotional debilitation as this thing courses > through our bodies.. > > > > I was often told I don’t deal well with pain…those words hurt….and on > top of carrying the fear of the disease and the struggle to cope is the > wounds from our family and friends…and that added weight is not > healthy….this group never says an unkind word…and I value it deeply… > > > > I removed myself from people who did not emotionally support me…I truly > believed they did not deserve my reserve of energy and I turned to the > groups.. > > they have been my mainstay for support knowledge and when the despair > hits… > > > > the lonely nights are indeed something that encompasses the pains….i > determined to make sure I no longer had the loneliness and pain of the > nights and I asked my doctor for IMOVANE….it guarantees me 6-7 hours of > sleep with no hangover effect….it helps restore my body also…I did not > like the thought of taking a sleeping pill…but it has replenished my > sleep which one so desperately needs….and reduces the pain killers > needed… > > > > the thoughts linger and I question why the lack of support from my > family..and I realized I could not be the gregarious person they > needed….and so I looked at them to see how they themselves had > diminished without my being me so to speak..i consider it their loss…as > well as mine..…and I carry the pains gently but know down deeply that > the problem is not with me….do not look at yourself….i found this group > who accepts my thoughts without judgement and answers the medical > concerns…and there are truer virtual hugs….i accept the loss of my > family as I endeavour to get well…and I guess rather than concentrate on > the fact that both my husband and I lost the ability together to not > even holds any longer I concentrate on my true friends in the group…. > > > > I don’t believe my words will be able to embrace your pains….for a > tangible hug from your family members would be wonderful…. > > > > I see it as their inability to accept a truth…and if people cannot > nourish you in some way…they are truly to be pitied… > > > > I hope you maybe consider something to help you sleep…the imovane is a > class of non benzodiazepine..this was discussed at great length before I > determined to take it…without that guarantee of sleep I would be a > mess…now I know my pain goes away at ten oclock at night and I am awake > at 600…both my husband and I > > > > http://www.biopsychiatry.com/zopiclone.html > > > > I love my family too, however support is a two way road…I have always > been them for them…but now realize I can no longer be there for them…my > energy goes to my disease and to those capable of a kind word… > > > > Thank you group for all you have given me….for and Tess I do hurt > for you also…. > > > > embraces to your hurts. > > Sincerely > > …and may you both have a pain free moment within your soul… Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 , I have read a lot about the infectious connection and mycoplasma and believe in the antibiotic treatment. Currently I am fighting with my rheumatologist to prescribe minocycline for me. He did give me a prescription, but for much less a dose than the protocol calls for. Rieters is associated with mycoplasma infection as well as salmonella and strept. Here is a clip from a site that explains it:. The arthritis associated with Reiter syndrome is a reactive arthritis, which means that an infectious organism cannot be cultured from the joint, although it may be triggered by an infection outside the joint. Reiter syndrome falls under the rheumatic disease category of seronegative spondyloarthropathies, which includes ankylosing spondylitis, psoriatic arthritis, the arthropathy of associated inflammatory bowel disease, juvenile onset ankylosing spondylitis, and juvenile chronic arthritis. Bacteria associated with Reiter syndrome are generally enteric or venereal and include the following: Shigella flexneri, Salmonella typhimurium, Salmonella enteritidis, Streptococcus viridans, Mycoplasma pneumonia, Cyclospora, Chlamydia trachomatis, Yersinia enterocolitica, and Yersinia pseudotuberculosis. Bacteria or their components (RNA, DNA) have been identified in synovial fluid cells, synovial biopsy specimens, and circulatory monocytes. http://www.emedicine.com/emerg/topic498.htm I am also seronegative and have always believed that my arthritis was triggered by an infection. My doctor tell me that infection may have triggered an immune response, but that the infection is no longer there. It just activated my immune system and it forgot to shut off. Just as many doctors insisted that ulcers were NOT curable by antibiotics, we find the same attitude amongst rheumatologists. I hope your treatment cures yours and your husband¹s arthritis. Hopefully I¹ll be able to convince my current rheumatologist, or I will have to move on to another more open minded doctor. a On 6/4/02 9:19 AM, " dot.com " <dot.communicator@...> wrote: > Hi there.. > > I appreciate the comment…I did not suggest it was contagious….i was > speaking about the infection connection…we do not have reiter’s… > > http://www.ra-infection-connection.com/ explains the connection …it is > a dissertation commentary that I understand but dare not try to > summate…. > > We were both hit with a virus…because I have asthma the virus manifested > in my body a tad differently than my husbands…we were not diagnosed at > the time as they thought we both had MS…and both had MRI to rule out the > MS…time went by in which our lives changed…. and two years later we both > got our second flare on January 8th and we grow nodes on our hands feet > wrists ankles knees…at the same time and if you read the theory behind > the infection connection it holds great merit for us for treatment…and > why this could have happened to us the way it did…also….my daughter > exhibited initial symptoms,,,since that time she has developed some > symptoms….the lady in the book also said that a virus swept through an > office and within time 8 people had been diagnosed with carpal tunnel > syndrome…there is also the story of the 17 rcmp officers who ate at the > same place and were struck with a stapphoccocal(spelling) bacteria….11 > of the 17 developed acute inflammatory arthritis…and never recovered… > > I won’t elaborate further as I don’t want to appear to be touting a book > or the choice of DMARDS we were given based upon our personal > situations….our blood work is all sero negative….it is not reiters…. > > But what has happened to my husband and myself carries weight to the > infection connection and the mycoplasma theory .. > I truly thank you for your input… > > Sincerely > > > > Re: [ ] a lonely night > Importance: High > > , > RA is not considered contagious and I find it curious that both you and > your > husband were diagnosed at the same time. Has anyone mentioned reactive > arthritis? It is also called Reiter¹s Syndrome. Here¹s some > information > about it: > > http://www.health.wvu.edu/clinical/arthritis/reactive.htm > > Family support is a topic we¹ve often talked about. Some people just > don¹t > know what to say or do and say things without knowing they are hurting. > > http://www.kineretrx.com/patient/friends_and_family.jsp > > http://www.duq.edu/PT/RA/PandFEducation.html > > http://www.arthritis.org/resources/Relationships/SupportGroups/Intro.asp > > Hope you are having a pain free day. > a > > > On 6/2/02 9:39 AM, " Dot.Com " <dot.communicator@...> wrote: > >> > Hello to you both.. >> > >> > >> > >> > my heart hurts for you both and anyone who is left alone in this >> > disease…as I read your emails I listen to the words that hurt and > recall >> > my own journey of lost family members and friends…my only advantage is >> > that my husband and I were both struck within 10 days of each other to >> > sero negative RA…we have struggled for two years together….I often > told >> > him that I would not wish to be in this alone for it is so hard to >> > describe the pains and the emotional debilitation as this thing > courses >> > through our bodies.. >> > >> > >> > >> > I was often told I don’t deal well with pain…those words hurt….and on >> > top of carrying the fear of the disease and the struggle to cope is > the >> > wounds from our family and friends…and that added weight is not >> > healthy….this group never says an unkind word…and I value it deeply… >> > >> > >> > >> > I removed myself from people who did not emotionally support me…I > truly >> > believed they did not deserve my reserve of energy and I turned to the >> > groups.. >> > >> > they have been my mainstay for support knowledge and when the despair >> > hits… >> > >> > >> > >> > the lonely nights are indeed something that encompasses the pains….i >> > determined to make sure I no longer had the loneliness and pain of the >> > nights and I asked my doctor for IMOVANE….it guarantees me 6-7 hours > of >> > sleep with no hangover effect….it helps restore my body also…I did not >> > like the thought of taking a sleeping pill…but it has replenished my >> > sleep which one so desperately needs….and reduces the pain killers >> > needed… >> > >> > >> > >> > the thoughts linger and I question why the lack of support from my >> > family..and I realized I could not be the gregarious person they >> > needed….and so I looked at them to see how they themselves had >> > diminished without my being me so to speak..i consider it their > loss…as >> > well as mine..…and I carry the pains gently but know down deeply that >> > the problem is not with me….do not look at yourself….i found this > group >> > who accepts my thoughts without judgement and answers the medical >> > concerns…and there are truer virtual hugs….i accept the loss of my >> > family as I endeavour to get well…and I guess rather than concentrate > on >> > the fact that both my husband and I lost the ability together to not >> > even holds any longer I concentrate on my true friends in the group…. >> > >> > >> > >> > I don’t believe my words will be able to embrace your pains….for a >> > tangible hug from your family members would be wonderful…. >> > >> > >> > >> > I see it as their inability to accept a truth…and if people cannot >> > nourish you in some way…they are truly to be pitied… >> > >> > >> > >> > I hope you maybe consider something to help you sleep…the imovane is a >> > class of non benzodiazepine..this was discussed at great length before > I >> > determined to take it…without that guarantee of sleep I would be a >> > mess…now I know my pain goes away at ten oclock at night and I am > awake >> > at 600…both my husband and I >> > >> > >> > >> > http://www.biopsychiatry.com/zopiclone.html >> > >> > >> > >> > I love my family too, however support is a two way road…I have always >> > been them for them…but now realize I can no longer be there for > them…my >> > energy goes to my disease and to those capable of a kind word… >> > >> > >> > >> > Thank you group for all you have given me….for and Tess I do > hurt >> > for you also…. >> > >> > >> > >> > embraces to your hurts. >> > >> > Sincerely >> > >> > …and may you both have a pain free moment within your soul… > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Dear ...I'm so glad you spoke with your husband, and that he had a supportive response. You all with stay in my prayers. I pray that going through this difficult journey together will only bring you even closer. With Love, Prayers & Hope... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 ((((()))))) >Dear ...I'm so glad you spoke with your husband, and that he had a >supportive response. You all with stay in my prayers. I pray that >going through this difficult journey together will only bring you even >closer. > >With Love, Prayers & Hope... > >Tess > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 , I'm so glad things are looking brighter! It must have been hard to share your deepest fears with your husband. Our best friends are our best friends for a reason. They love us no matter. Take care, and ((((Hugs)))) for you today. Debbie Mc -- >[ ] a lonely night > >I just needed to write to my new found >family of support. > >I am feeling lonely and I am in alot of pain tonight. >It seems that when >the >pain gets real bad, it forces me to see what >supports I dont have in my >life >- (family) and that causes this emotional >upset to kick in along with the >pain. > >I have no one to talk to right >now and so I decided I would just write down >what I am feeling here. My >Mom cant/doesnt want to be there for me & knows >how bad off I am right now >medically. I miss/want a relationship with her & >I want to call her when I >am in pain & cry. But she doesnt return my calls > & >my therapist reminds >me to try to stop setting myself up for that which >isnt >there. I've >called my sister too but for what ever reason, she doesnt call >me back. I >dont know if they are afraid or what. It doesnt matter I guess - >I just >get lonely when I am hurting physically and it slaps me in the face >as to >how alone I really am. > >I was in bed and trying to read a book but it >hurt my wrist too much to >turn >the pages. my shoulder hurts so bad right >now & my feet are getting >stabbing >pains in them tonight. I just got out >of bed & went to talk to my husband. >I >cried about how I want to do >things in my yard and I cant even read a book >tonight and how much I want >the support of my mom and sisters. >He did listen to me and then said he >was going out for a ride on his >motorcycle. So I feel that my pain and >reaching out for support sends >people >in my life running. > >I wish I >could be the healthy pain free wife , daughter and sister they >seem >to >all need me to be, but I am powerless over that right now. > >So, I am >writing here - you guys are all I have with this. > >Blessings, > C. > > > >_________________________________________________________________ >Join >the world's largest e-mail service with MSN Hotmail. > >http://www.hotmail.com > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi again.. When the doctor states that your infection is no longer there…of course it is no longer there…that is what befuddled dr brown when he was doing his research…so he changed the manner in which he made his determinations …The New Arhtiris Breakthrough..the only medical therapy clinically proven to produce long term improvement and remission…R A lupus juvenile ra fibromyalgia scleredoma and other forms of arthritis…by henry scammel who worked with dr brown…explains this process of why the original infection can no longer be located… They are all associated with mycoplasma How long was the prescription for minocin that was given to you?? I appreciate your input…and I guess if they are wrong on the sero negative and we do have this along with our daughter who has some signs…well the doxy will I am sure in time set it right… For your doctor…tell him that Kathleen turner the actress is being treated with the minocycline “””””””” says she takes Celebrex with Minocycline. http://www.usatoday.com/news/health/spotlight/2001-06-01-turner-arthriti s.htm and see what your rheumy says to this…it might just help… We only have ONE symptom…so I am confused …!!! What are the warning signs of Reiter's syndrome? <http://www.arthritis.ca/types%20of%20arthritis/reiters%20syndrome/defau lt.asp?s=1#top#top> * If you have Reiter's syndrome you will probably develop the warning signs within a few weeks after you've had an infection. * The infection may have been food poisoning or another illness of the intestine. It could also have been chlamydia (pronounced clam-i-dee-a), which is a disease passed on by an infected person during sex. Reiter's syndrome cannot be passed from one person to another. * Warning signs include stiff, tender joints. Usually only a few joints are affected. Most often Reiter's syndrome affects the knees, ankles, feet, and wrists. You may also have any of the other warning signs. * Sore muscles. * Pain in the lower back, or on the heel or bottom of the foot * Possible mild fever. * Frequent or painful urination. * Dull pain in the pelvic area. * Red, sore eyes. Sometimes the eyelids may stick together in the morning. * Blurred vision. * Sores in the mouth. These may be painful or painless. * Thick, crusty red-purple sores on the palms of the hands or the soles of the feet. * Sores on the genitals. These may be painful and can become infected. Thanks for your input Re: [ ] a lonely night > Importance: High > > , > RA is not considered contagious and I find it curious that both you and > your > husband were diagnosed at the same time. Has anyone mentioned reactive > arthritis? It is also called Reiter¹s Syndrome. Here¹s some > information > about it: > > http://www.health.wvu.edu/clinical/arthritis/reactive.htm > > Family support is a topic we¹ve often talked about. Some people just > don¹t > know what to say or do and say things without knowing they are hurting. > > http://www.kineretrx.com/patient/friends_and_family.jsp > > http://www.duq.edu/PT/RA/PandFEducation.html > > http://www.arthritis.org/resources/Relationships/SupportGroups/Intro.asp > > Hope you are having a pain free day. > a > > > On 6/2/02 9:39 AM, " Dot.Com " <dot.communicator@...> wrote: > >> > Hello to you both.. >> > >> > >> > >> > my heart hurts for you both and anyone who is left alone in this >> > disease…as I read your emails I listen to the words that hurt and > recall >> > my own journey of lost family members and friends…my only advantage is >> > that my husband and I were both struck within 10 days of each other to >> > sero negative RA…we have struggled for two years together….I often > told >> > him that I would not wish to be in this alone for it is so hard to >> > describe the pains and the emotional debilitation as this thing > courses >> > through our bodies.. >> > >> > >> > >> > I was often told I don’t deal well with pain…those words hurt….and on >> > top of carrying the fear of the disease and the struggle to cope is > the >> > wounds from our family and friends…and that added weight is not >> > healthy….this group never says an unkind word…and I value it deeply… >> > >> > >> > >> > I removed myself from people who did not emotionally support me…I > truly >> > believed they did not deserve my reserve of energy and I turned to the >> > groups.. >> > >> > they have been my mainstay for support knowledge and when the despair >> > hits… >> > >> > >> > >> > the lonely nights are indeed something that encompasses the pains….i >> > determined to make sure I no longer had the loneliness and pain of the >> > nights and I asked my doctor for IMOVANE….it guarantees me 6-7 hours > of >> > sleep with no hangover effect….it helps restore my body also…I did not >> > like the thought of taking a sleeping pill…but it has replenished my >> > sleep which one so desperately needs….and reduces the pain killers >> > needed… >> > >> > >> > >> > the thoughts linger and I question why the lack of support from my >> > family..and I realized I could not be the gregarious person they >> > needed….and so I looked at them to see how they themselves had >> > diminished without my being me so to speak..i consider it their > loss…as >> > well as mine..…and I carry the pains gently but know down deeply that >> > the problem is not with me….do not look at yourself….i found this > group >> > who accepts my thoughts without judgement and answers the medical >> > concerns…and there are truer virtual hugs….i accept the loss of my >> > family as I endeavour to get well…and I guess rather than concentrate > on >> > the fact that both my husband and I lost the ability together to not >> > even holds any longer I concentrate on my true friends in the group…. >> > >> > >> > >> > I don’t believe my words will be able to embrace your pains….for a >> > tangible hug from your family members would be wonderful…. >> > >> > >> > >> > I see it as their inability to accept a truth…and if people cannot >> > nourish you in some way…they are truly to be pitied… >> > >> > >> > >> > I hope you maybe consider something to help you sleep…the imovane is a >> > class of non benzodiazepine..this was discussed at great length before > I >> > determined to take it…without that guarantee of sleep I would be a >> > mess…now I know my pain goes away at ten oclock at night and I am > awake >> > at 600…both my husband and I >> > >> > >> > >> > http://www.biopsychiatry.com/zopiclone.html >> > >> > >> > >> > I love my family too, however support is a two way road…I have always >> > been them for them…but now realize I can no longer be there for > them…my >> > energy goes to my disease and to those capable of a kind word… >> > >> > >> > >> > Thank you group for all you have given me….for and Tess I do > hurt >> > for you also…. >> > >> > >> > >> > embraces to your hurts. >> > >> > Sincerely >> > >> > …and may you both have a pain free moment within your soul… > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 , This is great that your fears have been put to rest. I often have the same worries, wondering why my husband would stay with someone with so many problems. They stay because they love us. It¹s hard on our spouses too but often we don¹t realize it with all of our own internal conflicts going on. Hope you have a painfree day. a On 6/4/02 9:16 AM, " klc youlater " <castaway41@...> wrote: > Hi Carol - After I posted this, I ended up sharing all of these fears of > mine with my husband last night. He was very supportive & told me he has no > intention of doing anything but standing by me. > > I find this group helpful in so many different ways - often times I use it > to vent first and then I find because I receive validation and support in > return, it gives me the strength to take my concerns and address them in the > areas of my life where I need to. That doesnt mean I always get the support > I need/want " out there " but I am learning ways to resolve that internally. > > Blessings, > C. > > > > > > > > > >> >From: " Carol " Reply- Subject: RE: >> >[ ] a lonely night Date: Tue, 4 Jun 2002 09:06:23 -0400 >> > >> ><< I also am afraid that my husband is going to be sick of being married to >> >an " old lady " as I am 42 and that maybe he'll leave me for someone healthy >> >and that thought also keeps me from getting the walker I need. I could not >> >survive alone. I know this pain is impacting our relationship as I am not >> >the active woman he married. Yes, he married me in sickness and in health, >> >but I feel in a way I am physically abandoning him because I am in chronic >> >pain right now. So much to think about.?>> >> > >> >, we have a lot in common! That was my biggest fear a few months ago, >> >and is still a fear for me. I've read that the first year with RA is the >> >hardest, because you're looking for medications that will work for you. I >> >was diagnosed in Feb, and it seems like the RA has become such a large part >> >of my existence. I think my husband MUST be getting sick of hearing about >> >it. I know my Mom seems to be. When you're first dealing with such a >> >life-changing thing as RA, you need to be able to talk about it. That's why >> >this group is so great. >> > >> >My husband has been very supportive thus far, though, and I really have no >> >reason to feel like he would leave me. It's a groundless fear. If you think >> >the walker would help, then by all means you should use it. Explain to him >> >it isn't a permanent thing, just an aid until the rheumatologist finds >> >medications that will control the disease. >> > >> >I hope you have a pain free day! >> > >> >Hugs, Carol >> > >> > >> >[ ] a lonely night > >I just needed to write to my new found >> >family of support. > >I am feeling lonely and I am in alot of pain tonight. >> >It seems that when >the >pain gets real bad, it forces me to see what >> >supports I dont have in my >life >- (family) and that causes this emotional >> >upset to kick in along with the >pain. > >I have no one to talk to right >> >now and so I decided I would just write down >what I am feeling here. My >> >Mom cant/doesnt want to be there for me & knows >how bad off I am right now >> >medically. I miss/want a relationship with her & >I want to call her when I >> >am in pain & cry. But she doesnt return my calls > & >my therapist reminds >> >me to try to stop setting myself up for that which >isnt >there. I've >> >called my sister too but for what ever reason, she doesnt call >me back. I >> >dont know if they are afraid or what. It doesnt matter I guess - >I just >> >get lonely when I am hurting physically and it slaps me in the face >as to >> >how alone I really am. > >I was in bed and trying to read a book but it >> >hurt my wrist too much to >turn >the pages. my shoulder hurts so bad right >> >now & my feet are getting >stabbing >pains in them tonight. I just got out >> >of bed & went to talk to my husband. >I >cried about how I want to do >> >things in my yard and I cant even read a book >tonight and how much I want >> >the support of my mom and sisters. >He did listen to me and then said he >> >was going out for a ride on his >motorcycle. So I feel that my pain and >> >reaching out for support sends >people >in my life running. > >I wish I >> >could be the healthy pain free wife , daughter and sister they >seem >to >> >all need me to be, but I am powerless over that right now. > >So, I am >> >writing here - you guys are all I have with this. > >Blessings, > C. > >>>> > > >_________________________________________________________________ >>>> >Join >> >the world's largest e-mail service with MSN Hotmail. > >> >http://www.hotmail.com > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 , So glad that was your husband's response but be prepared that feeling will resurface many times-in you. Does in me all the time, my husband and children have been through the wringer with me. In the last 8 years I have had 11 major surgeries and before that had only been in the hospital to have babies-5. Have been in intensive care twice after almost dying. But survive. Now I am battling with feelings of emotional, nonintentional abuse. Every time Steve says " I do everything " I cringe, sometime I actually withdraw and go to bed with a book. The kids too have been great but I can't help feeling they feel used. So keep sharing-we all experience similar feelings! Temple 3 Fox Haven Way Chelmsford, MA 01824 dat2352@... http://www.homestead.com/kuddlekrittersfarm/index.html FAMILY http://www.homestead.com/kuddlekrittersdairygoats/index.html FARM http://www.homestead.com/kuddlekraft/index.html CRAFTS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 this is also a reason i stay single. i just can't bring someone else into this mess. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 > I am so glad that your husband is willing to support you, we need that. My husband would say that he is supportive but has no idea, even after 15 years with RA. He always helps me down stairs and places he may think I will have touble with. We were talking about our financial problems last night and because I can walk I guess he thinks I should be able to work and maybe I could for a short time, but it will be me hurting at night not him. I really can't even explain it to him, for one thing he doesn't want to listen he changed the subject to his job. It will take me a few days to get over our conversation because he hurt my feelings. I don't think we should have to go out and do something to prove what our joint will be going through but if that is what it takes I guess that is what I will do. (I have been told I have a stubborn streck). I really don't seem to be as bad off as some of the people that post messages on here but all my joints are swollen and sore, I am also having trouble with my neck. Oh well the sun is shining and I like that so I will manage. Guess it does help to vent. I really do have a very good husband that puts up with a lot. Hope you are doing better soon and get the walker if it will help you get around. There really are alot of tools out there to help make things easier. in WA >_________________________________________________________________ Chat with > >friends online, try MSN Messenger: http://messenger.msn.com > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Dear , my Northern Neighbor...just sending loving thoughts & prayers. I know well the struggle of wanting & needing to work, but being well aware of the exorbitant price my body & mind will pay. You & yours are in my prayers. Hugs of Hope & Understanding.... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi , It is hard financially on the family when you are not able to work due to medical reasons. (or any other reason) I have not worked outside the home in years as we have a child with special needs that necessitates my being home. However, that always meant me doing the laundry, food shopping, cleaning , etc. all by myself. It also meant sacrificing without the extra income. This has worked out fine until recently when I started to go downhill medically. Now I find that even though I don't work outside the home, I am needing help with the things that have been expected as my part in supporting the family. This is a strain now. I am sure my husband is feeling like he has to do more than he should and I feel bad putting this added need for help on him. It is a tough juggling act for everyone involved. I think when you " look " healthy, but are really in pain, it is even harder for people to comprehend. I look like I could do anything, but I am in severe pain just walking around my house. To get out of bed & go the bathroom (which is in my bedroom) can bring tears to my eyes from the pain. It must seem so incomprehensible to those who do not suffer. I just keep reminding my husband that no one would choose this. And I remind him when he is being supportive emotionally that if he were in need of help, I would be there for him too. Hope you feel better - both physically and emotionally. God Bless, C. >My husband would say that he is supportive but has no idea, even >after 15 years with RA. He always helps me down stairs and places he >may think I will have touble with. We were talking about our >financial problems last night and because I can walk I guess he >thinks I should be able to work and maybe I could for a short time, >but it will be me hurting at night not him. I really can't even >explain it to him, for one thing he doesn't want to listen he changed >the subject to his job. > >It will take me a few days to get over our conversation because he >hurt my feelings. I don't think we should have to go out and do >something to prove what our joint will be going through but if that >is what it takes I guess that is what I will do. (I have been told I >have a stubborn streck). I really don't seem to be as bad off as >some of the people that post messages on here but all my joints are >swollen and sore, I am also having trouble with my neck. > >Oh well the sun is shining and I like that so I will manage. Guess >it does help to vent. I really do have a very good husband that puts >up with a lot. > >Hope you are doing better soon and get the walker if it will help you >get around. There really are alot of tools out there to help make >things easier. > > in WA > >_________________________________________________________________ >Chat with > > >friends online, try MSN Messenger: http://messenger.msn.com > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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