Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Judi,....You have had your rough share too, haven't you? I am doing the best that I can, in the situation that I'm in. Maybe I need a pain doctor, I could check in to that. Have you ever went to a pain management doctor? I have got to do something,.... You take care of yourself, and my prayers are always with you, T > > Hey lady, > > I can't speak as an expert on RA, only on Dercum's (and not too good > at that either!) but what I have learned is not to let the pain > define you. You are so many other things other than pain, and it's > hard to see that when you hurt so bad. Believe me, I do my share of > crying, because so far there really hasn't been a treatment found > that does more than slightly dull the pain. One " iffy " treatment > that 2 people are trying that is very expensive and most insurance > won't cover it, and they still don't know the outcome. > > I know you are limited by finances and insurance, but what says > is true--sounds like you need to find another doctor, one who will > take your pain and concerns seriously. Take it one day at a time, > and try to look outside the pain for something good, even if it is > for a brief moment. It's the hand we've been dealt, and sometimes it > sucks (ok, MOST of the time it sucks!) but we've got to play it the > best we can. I'll keep you in my prayers, > > Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 > > > > > > Dear All, > > > > Have been reading and not posting of late due to bad hands etc but > > wanted to say hi again and thanks for being such a kind, caring > > group. That may sound corny but during days over the last week or > so > > when sitting a the pc is all i could muster, it gave me comfort and > a > > feeling of support by just reading the messages. I can identify so > > much with so many of you and my heart goes out to you for all the > > suffering you endure every day. Despite this i feel that we keep > our > > sense of humour, cherise the good days and vent our frustration at > > the bad ones. I've found it very interesting to compare the way in > > which we are treated on different sides of the Atlantic, the UK has > > the NHS and i am very lucky to have a good rheumy (hadn't heard a > > rheumy doc get called that before! Much better than saying and > > spelling the whole thing!! Thank you!)doctor and consultant but > > although our healthcare is free (we pay through national > > contributions when we work, tax basically) not very many people in > my > > area in Cornwall (South-West England) were allowed Remicade or > Enbrel > > because of a funding crisis (they say it's costs £10K per year each) > > which is crazy in this day and age. Is it the same in the US with > > insurance companies paying depending on what they cover? Nobody > > should have to suffer because some big-wig in a suit decides it's > not > > covered, maybe they would like to spend a week in a flare- up....no > i > > doubt it either. I've been reading the posts about insurance issues > > and wonder how some of you don't go out of your minds with worry. > > > > Also read posts about the British tv programme " Keeping Up > > Appearances " ! They still show it here too and although i've > probably > > seen them all i just love that show......and yes there really are > > ladies like that here!! > > > > Had my first treatment of chemotherapy for lymphoma last Thursday > and > > doc's gave me 5 days of steroids at 75mg per day, along with the > > Rituximab, Chyclophosphamide (could well have too many letters > there, > > not sure!!) and Vincristin. It was ok and side-effects managable > > too. The steroids have knocked the RA out for a minute and i am > > relishing the energy and pain-free days! Took my puppy Ky for a > good > > long walk (well long for me, round the whole field!!)in the winter > > sunshine this morning, something i've missed doing of late, and > felt > > really positive for the first time since i was diagniosed just > before > > Christmas. Maybe the steroids but decided that life is for living > > now, somethings i do may not be good for my RA (like ice-skating > with > > my daughter for her birthday recently, half killed me but boy was > it > > fun!!) but are good for my soul and well-being. We're all so much > > more than just our diseases, that obvious when you read the > messages > > here and i'm glad i have found a place to come and write what i > feel > > amongst friends who understand. Thank you again. > > > > Best go to bed now, it's 1 in the morning over here and i just came > > down for a read and hot chocolate!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 Hi Clare, Your so welcome Clare, that's what friends are for. I know it's very hard for you right now, and I just want you to know that I'm here. My fingers are doing much better. I'm having problems with fatique myself. I just don't feel like doing anything anymore. It's all I can do to get up, take a shower, and hobble around the house all day. Thank God, I don't have to work, I couldn't make it. I take Humira,methotrexate,lodine, folic acid. I went off the flexeril for now. I know that the methotrexate plays a big role in the fatique. My rheumy tells me the RA i s very aggressive, and we just can't get it in control. I have so much pain every day, there are no really good days anymore. It's all I can do to get to the store anymore for groceries. But, I push myself, to much responsibility, can't lay down. I'm glad that a nurse came by, and explained things. That was really nice. You have a long road ahead of you, just know that I'm always here if you need a shoulder. Your going to have to just rest a whole lot, and get yourself better. Gosh, were always fatiqued by the RA, I can't imagine even more:( Is there anything you can take to help the hair loss? I know with the methotrexate, we can take folic acid to help the hair loss. Have you thought maybe a nice wig? They have some really beautiful ones. I have thought about it myself. I use to have long thick hair, and have lost most of it. Are you not taking any meds right now for the RA? It's important to take something to stop the progression of the disease. Are you able to take them, or do you have to stop them completly while on the chemo? You know the methotrexate is a chemo med, but used in a lower dose for the RA. I am always here, Clare. You can email me privately anytime, I would love to hear from you. I live in Oklahoma, have been here all my life. I have traveled out of the US, and love to travel. big hugs, Tawny > > > > > > > > > Dear All, > > > > > > Have been reading and not posting of late due to bad hands etc > but > > > wanted to say hi again and thanks for being such a kind, caring > > > group. That may sound corny but during days over the last week > or > > so > > > when sitting a the pc is all i could muster, it gave me comfort > and > > a > > > feeling of support by just reading the messages. I can identify > so > > > much with so many of you and my heart goes out to you for all the > > > suffering you endure every day. Despite this i feel that we keep > > our > > > sense of humour, cherise the good days and vent our frustration > at > > > the bad ones. I've found it very interesting to compare the way > in > > > which we are treated on different sides of the Atlantic, the UK > has > > > the NHS and i am very lucky to have a good rheumy (hadn't heard a > > > rheumy doc get called that before! Much better than saying and > > > spelling the whole thing!! Thank you!)doctor and consultant but > > > although our healthcare is free (we pay through national > > > contributions when we work, tax basically) not very many people > in > > my > > > area in Cornwall (South-West England) were allowed Remicade or > > Enbrel > > > because of a funding crisis (they say it's costs £10K per year > each) > > > which is crazy in this day and age. Is it the same in the US with > > > insurance companies paying depending on what they cover? Nobody > > > should have to suffer because some big-wig in a suit decides it's > > not > > > covered, maybe they would like to spend a week in a flare- > up....no > > i > > > doubt it either. I've been reading the posts about insurance > issues > > > and wonder how some of you don't go out of your minds with worry. > > > > > > Also read posts about the British tv programme " Keeping Up > > > Appearances " ! They still show it here too and although i've > > probably > > > seen them all i just love that show......and yes there really are > > > ladies like that here!! > > > > > > Had my first treatment of chemotherapy for lymphoma last Thursday > > and > > > doc's gave me 5 days of steroids at 75mg per day, along with the > > > Rituximab, Chyclophosphamide (could well have too many letters > > there, > > > not sure!!) and Vincristin. It was ok and side-effects managable > > > too. The steroids have knocked the RA out for a minute and i am > > > relishing the energy and pain-free days! Took my puppy Ky for a > > good > > > long walk (well long for me, round the whole field!!)in the > winter > > > sunshine this morning, something i've missed doing of late, and > > felt > > > really positive for the first time since i was diagniosed just > > before > > > Christmas. Maybe the steroids but decided that life is for > living > > > now, somethings i do may not be good for my RA (like ice- skating > > with > > > my daughter for her birthday recently, half killed me but boy was > > it > > > fun!!) but are good for my soul and well-being. We're all so > much > > > more than just our diseases, that obvious when you read the > > messages > > > here and i'm glad i have found a place to come and write what i > > feel > > > amongst friends who understand. Thank you again. > > > > > > Best go to bed now, it's 1 in the morning over here and i just > came > > > down for a read and hot chocolate!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 > > > > > > --- In , " tdianaok " <tdianaok@y...> wrote: > > > Hi Tawny, > > > > Thank you so much for your message, i was very touched by your kind > > words and you made me smile inside, that's exactly what i meant > about > > being in such caring company, bless you. How are your fingers > doing > > at the moment? Where in the US are you from Tawny and how is your > > disease doing? My steroids wore off very quickly unfortunately so > > it's back to feeling rough for most of the day. Never mind, it was > > good whilst it lasted! My treatment will last until around August > > and be every three weeks so there's another seven to go by my > > reckoning. A nurse from our cancer support network came this > morning > > and explained more to me. Apparently i will feel worse as the > > treatments go by, more tired,(RA keeps me so tired if i sleep much > > more they'll think i've passed on!!) sick and of course the hair > > loss. I keep my hair very cropped anyway as my hands can't manage > it > > long but none at all will take some getting used to. My husband > > kindly pointed out i have a nice shape head!!! I think that was > his > > way of telling me he'll love me either way! Bit concerned about > the > > RA whilst having the chemo. Do you know if stopping and starting > > steroids is good because i have flared up pretty bad and worry > about > > the damage going on. Anyway enough about me, take good care of > > yourself Tawny and thank you again for your lovely message. I hope > > we will talk again. > > > > Best wishes,love and hugs > > Clare xxxx, > > > > Hi Clare, > > > I have also been reading more then posting lately. I have been in > a > > > flare, so really working on my fingers. They are doing better > > today. > > > You are a very strong minded lady, and I'm so happy your here. > I'm > > > glad to hear that your chemo treatment went well. How long will > > you > > > be on the treatment? > > > I'm glad the med is helping the RA, and you got a nice walk with > > your > > > puppy. It sounds you had a beautiful day. I am looking forward > to > > > spring, and hope to start walking. > > > I will keep you in my prayers, Tawny > > > > > > > > > > > > > > > --- In , " caug72 " <Caugarde@a...> wrote: > > > > > > > > > > > > Dear All, > > > > > > > > Have been reading and not posting of late due to bad hands etc > > but > > > > wanted to say hi again and thanks for being such a kind, caring > > > > group. That may sound corny but during days over the last week > > or > > > so > > > > when sitting a the pc is all i could muster, it gave me comfort > > and > > > a > > > > feeling of support by just reading the messages. I can identify > > so > > > > much with so many of you and my heart goes out to you for all > the > > > > suffering you endure every day. Despite this i feel that we > keep > > > our > > > > sense of humour, cherise the good days and vent our frustration > > at > > > > the bad ones. I've found it very interesting to compare the > way > > in > > > > which we are treated on different sides of the Atlantic, the UK > > has > > > > the NHS and i am very lucky to have a good rheumy (hadn't heard > a > > > > rheumy doc get called that before! Much better than saying and > > > > spelling the whole thing!! Thank you!)doctor and consultant but > > > > although our healthcare is free (we pay through national > > > > contributions when we work, tax basically) not very many people > > in > > > my > > > > area in Cornwall (South-West England) were allowed Remicade or > > > Enbrel > > > > because of a funding crisis (they say it's costs £10K per year > > each) > > > > which is crazy in this day and age. Is it the same in the US > with > > > > insurance companies paying depending on what they cover? Nobody > > > > should have to suffer because some big-wig in a suit decides > it's > > > not > > > > covered, maybe they would like to spend a week in a flare- > > up....no > > > i > > > > doubt it either. I've been reading the posts about insurance > > issues > > > > and wonder how some of you don't go out of your minds with > worry. > > > > > > > > Also read posts about the British tv programme " Keeping Up > > > > Appearances " ! They still show it here too and although i've > > > probably > > > > seen them all i just love that show......and yes there really > are > > > > ladies like that here!! > > > > > > > > Had my first treatment of chemotherapy for lymphoma last > Thursday > > > and > > > > doc's gave me 5 days of steroids at 75mg per day, along with > the > > > > Rituximab, Chyclophosphamide (could well have too many letters > > > there, > > > > not sure!!) and Vincristin. It was ok and side-effects > managable > > > > too. The steroids have knocked the RA out for a minute and i > am > > > > relishing the energy and pain-free days! Took my puppy Ky for > a > > > good > > > > long walk (well long for me, round the whole field!!)in the > > winter > > > > sunshine this morning, something i've missed doing of late, and > > > felt > > > > really positive for the first time since i was diagniosed just > > > before > > > > Christmas. Maybe the steroids but decided that life is for > > living > > > > now, somethings i do may not be good for my RA (like ice- > skating > > > with > > > > my daughter for her birthday recently, half killed me but boy > was > > > it > > > > fun!!) but are good for my soul and well-being. We're all so > > much > > > > more than just our diseases, that obvious when you read the > > > messages > > > > here and i'm glad i have found a place to come and write what i > > > feel > > > > amongst friends who understand. Thank you again. > > > > > > > > Best go to bed now, it's 1 in the morning over here and i just > > came > > > > down for a read and hot chocolate!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Thanks Joan, I will call them tomorrow. hugs, T > > > Would anyone know of an assistance program for Lidoderm 5% patches, > > the company is Endo Pharmaceutical? I really need these patches, but > > can't afford $180 for 30, with no prescription insurance. > > I don't feel well now, so don't spend much time on the computer. If > > anyone can help me search, I would be so grateful. > > Thanks Tawny > > > > > > > Quote Link to comment Share on other sites More sharing options...
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