Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Hi , Melt here; I am so glad to read your post about doing better and having a renewed outlook. I too, go thru the same ups and downs emotionally and I take an anti-depressant. Your point of getting the proper pain management hit home though. I do believe that some should walk in our shoes for just one day without medication to get just a spark of an idea of this disease. So happy for you and we missed you. Till soon, Patty Update > Hello Everyone, > > I know it has been awhile. I am doing better. After almost being fired > because of being sick, losing a promotion because of this, taking a medical > leave since mid Oct. I am now back at work. I started back to work on Jan. > 4. I am so excited and happy about this. I am going to give it my over > 100% to make it work. Wish me luck. This has been a struggle but getting > better each day. > > Mentally and Emotionally I am doing very well. I am out of the nasty > depression I was in for way too long. Physically I still struggle day to > day but because I have changed my attitude and the way I am dealing and > coping with my illness, this has been much easier to handle and deal with. > Of course finally getting some pain relief certainly has helped. That one > is a long story. > > I now consider myself amongst the lucky living. I am working hard at > improving my quality of life. I have come pretty far from not caring any > more and just plain giving up. It is difficult when you lose hope and > faith. I have now found these things again. > > I wanted to thank everyone for sticking by me even though I may have seemed > impossible to deal with at times. I hope to offer all of you the same > wonderful support. > > I hope everyone is having a wonderful pain free day. > > Thanks for listening. > > Love, > > > jatw@... > > > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Hi , Melt here; I am so glad to read your post about doing better and having a renewed outlook. I too, go thru the same ups and downs emotionally and I take an anti-depressant. Your point of getting the proper pain management hit home though. I do believe that some should walk in our shoes for just one day without medication to get just a spark of an idea of this disease. So happy for you and we missed you. Till soon, Patty Update > Hello Everyone, > > I know it has been awhile. I am doing better. After almost being fired > because of being sick, losing a promotion because of this, taking a medical > leave since mid Oct. I am now back at work. I started back to work on Jan. > 4. I am so excited and happy about this. I am going to give it my over > 100% to make it work. Wish me luck. This has been a struggle but getting > better each day. > > Mentally and Emotionally I am doing very well. I am out of the nasty > depression I was in for way too long. Physically I still struggle day to > day but because I have changed my attitude and the way I am dealing and > coping with my illness, this has been much easier to handle and deal with. > Of course finally getting some pain relief certainly has helped. That one > is a long story. > > I now consider myself amongst the lucky living. I am working hard at > improving my quality of life. I have come pretty far from not caring any > more and just plain giving up. It is difficult when you lose hope and > faith. I have now found these things again. > > I wanted to thank everyone for sticking by me even though I may have seemed > impossible to deal with at times. I hope to offer all of you the same > wonderful support. > > I hope everyone is having a wonderful pain free day. > > Thanks for listening. > > Love, > > > jatw@... > > > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Hi , Melt here; I am so glad to read your post about doing better and having a renewed outlook. I too, go thru the same ups and downs emotionally and I take an anti-depressant. Your point of getting the proper pain management hit home though. I do believe that some should walk in our shoes for just one day without medication to get just a spark of an idea of this disease. So happy for you and we missed you. Till soon, Patty Update > Hello Everyone, > > I know it has been awhile. I am doing better. After almost being fired > because of being sick, losing a promotion because of this, taking a medical > leave since mid Oct. I am now back at work. I started back to work on Jan. > 4. I am so excited and happy about this. I am going to give it my over > 100% to make it work. Wish me luck. This has been a struggle but getting > better each day. > > Mentally and Emotionally I am doing very well. I am out of the nasty > depression I was in for way too long. Physically I still struggle day to > day but because I have changed my attitude and the way I am dealing and > coping with my illness, this has been much easier to handle and deal with. > Of course finally getting some pain relief certainly has helped. That one > is a long story. > > I now consider myself amongst the lucky living. I am working hard at > improving my quality of life. I have come pretty far from not caring any > more and just plain giving up. It is difficult when you lose hope and > faith. I have now found these things again. > > I wanted to thank everyone for sticking by me even though I may have seemed > impossible to deal with at times. I hope to offer all of you the same > wonderful support. > > I hope everyone is having a wonderful pain free day. > > Thanks for listening. > > Love, > > > jatw@... > > > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2002 Report Share Posted January 21, 2002 Dear Connie, I am so glad you are getting stronger and stronger each day. It sounds like your finally getting some answers and some treatment for your problems. The Adrenal Crisis sounds serious I hope you will take extra care of your self. You have definitely been through way too much and for way too long. Keep us posted when you feel up to it. This is something I know so little about but I would like to know more. I wonder how common this is for our disease. Your in my thoughts and prayers. Love, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2002 Report Share Posted January 21, 2002 Dear Connie, I am so glad you are getting stronger and stronger each day. It sounds like your finally getting some answers and some treatment for your problems. The Adrenal Crisis sounds serious I hope you will take extra care of your self. You have definitely been through way too much and for way too long. Keep us posted when you feel up to it. This is something I know so little about but I would like to know more. I wonder how common this is for our disease. Your in my thoughts and prayers. Love, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Connie; Just keep the wind in your hair the sun on your face and most imported keep the bugs off you teeth( ug) riide in you dreams and when you can not dream of the rides you were lucky to have tell then we keep you in our prayers and send you the thoughts of care and love to you both over there Marty G. Re: Re:update Hi gang been gone for a few days still not feeling up to par but iam getting stronger and stronger every day, I am working in the cycle shop from 10-2 everyday and that just about wipes me out.. Were not to busy but iam finshing the year end books for our taxes so its really more mental than anything. Joes been great,hes been off work this past week for his high blood pressure,and his diabetes. We both been feeling rotten,and i think alot of this is stress from me being so sick. I did go into adrenal crisis last night was throwing up and getting dehydrated i had to take 2 zofran (nausea med) injections and increase the hydrocortisone yesterday.i have talked with my Endo doc and i will have to learn how to give myself an injection of hydrocortisone when something like this happens i already know how to do the injections. But i have to go thru classes and learn when i should take it and when not to. and then i also have to watch my blood pressure during adrenal crisis. i can tell when my blood pressure gets to low and then thats time when i go to the ER. i am adjusting to this i have just added it to the list of secondary problems to stills disease. Only this is a little harder because of all the complications that can arise from this. Heck i thought my eye probelms and going blind was bad but this is alot worse due to the reason this can lead to coma or death. so this has been a little more difficult than the rest. i would rather be alive so i an deal with going blind if it comes down to it. i love you all and the support and prayers will never be forgotten you all mean so much to me love connie Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Connie; Just keep the wind in your hair the sun on your face and most imported keep the bugs off you teeth( ug) riide in you dreams and when you can not dream of the rides you were lucky to have tell then we keep you in our prayers and send you the thoughts of care and love to you both over there Marty G. Re: Re:update Hi gang been gone for a few days still not feeling up to par but iam getting stronger and stronger every day, I am working in the cycle shop from 10-2 everyday and that just about wipes me out.. Were not to busy but iam finshing the year end books for our taxes so its really more mental than anything. Joes been great,hes been off work this past week for his high blood pressure,and his diabetes. We both been feeling rotten,and i think alot of this is stress from me being so sick. I did go into adrenal crisis last night was throwing up and getting dehydrated i had to take 2 zofran (nausea med) injections and increase the hydrocortisone yesterday.i have talked with my Endo doc and i will have to learn how to give myself an injection of hydrocortisone when something like this happens i already know how to do the injections. But i have to go thru classes and learn when i should take it and when not to. and then i also have to watch my blood pressure during adrenal crisis. i can tell when my blood pressure gets to low and then thats time when i go to the ER. i am adjusting to this i have just added it to the list of secondary problems to stills disease. Only this is a little harder because of all the complications that can arise from this. Heck i thought my eye probelms and going blind was bad but this is alot worse due to the reason this can lead to coma or death. so this has been a little more difficult than the rest. i would rather be alive so i an deal with going blind if it comes down to it. i love you all and the support and prayers will never be forgotten you all mean so much to me love connie Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Connie; Just keep the wind in your hair the sun on your face and most imported keep the bugs off you teeth( ug) riide in you dreams and when you can not dream of the rides you were lucky to have tell then we keep you in our prayers and send you the thoughts of care and love to you both over there Marty G. Re: Re:update Hi gang been gone for a few days still not feeling up to par but iam getting stronger and stronger every day, I am working in the cycle shop from 10-2 everyday and that just about wipes me out.. Were not to busy but iam finshing the year end books for our taxes so its really more mental than anything. Joes been great,hes been off work this past week for his high blood pressure,and his diabetes. We both been feeling rotten,and i think alot of this is stress from me being so sick. I did go into adrenal crisis last night was throwing up and getting dehydrated i had to take 2 zofran (nausea med) injections and increase the hydrocortisone yesterday.i have talked with my Endo doc and i will have to learn how to give myself an injection of hydrocortisone when something like this happens i already know how to do the injections. But i have to go thru classes and learn when i should take it and when not to. and then i also have to watch my blood pressure during adrenal crisis. i can tell when my blood pressure gets to low and then thats time when i go to the ER. i am adjusting to this i have just added it to the list of secondary problems to stills disease. Only this is a little harder because of all the complications that can arise from this. Heck i thought my eye probelms and going blind was bad but this is alot worse due to the reason this can lead to coma or death. so this has been a little more difficult than the rest. i would rather be alive so i an deal with going blind if it comes down to it. i love you all and the support and prayers will never be forgotten you all mean so much to me love connie Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hey Cat, I wish we could all come and have moving parties. I'm great at that sort of thing, did it many times myself and for others lol. There are a couple of members doing the moving around the island of late. Maybe when you do get all said and done it will be a wonderful experience to be in a new place, for the new place you have come to in the past weeks:) Ironic how life throws things in and sometimes they happen to be blessings in diguise. Hoping at least they will be smoother for you, and do wish something would turn around with the therapy though. Maybe our powers of thought can be stronger than we hope? We will try, Till soon, Love to you, Melt > greetings y'all > > well its been a wee while since i posted, but my e-mail has been down..i was able to pop into chat thurs for a few minutes..it was wonderful and frustrating...wonderful cause i got to natter at my great friends, frustrating cause i have to try and type with the left hand... > ah well......here goes > i have had to stop physio because my husband pardon...EX..has not lived up to his part of the agreement HE made with my buddy nancy while i was still out of it...all about money of course...so, i am terribly upset about not being able to have physio 2 or three times a week..but at 40 bucks a visit i just can't make it happen. my doctor is away and so getting a refferal to the hos[ital for physio may be a long time in the offing, and with the huge healthcare budget cuts....well i seem to be falling through the cracks...lol..and since i am 30lbs lighter since all of this i could very likely REALLY fall thru them thar cracks.... > the worst part is i cannot pay the rent this month...so will have to get out by the 15th i guess...the kids found me a mobile in salmon arm but not avaiable til end of feb...so we must pack up here take my things to their place then move it all again 2 weeks later and i am still pretty useless, what with the buggered up hand leg and STILL my back from the fall almost four weeks ago.... > so, my dear friends, things have not been easy, but, hopefully i will be able to get it all together soon..... > the nurses no longer have to come to change the dressing cause FINALLY the arm has healed..the adhesions are killer and the nerve damage more than i would have wished for ....BUT gibbled as it might be i still have the damned thing...lol...things could have so easily gone the other way that it's hard to be a sad sack...not in my nature to be down for long, but its been a rough old road, and more to get through in the weeks ahead. > okay pooped now...lol > much love, many smiles > cat > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Dear Cat, Thank you for checking in with us sweety! Still a Southpaw eh?? (I do understand how difficult it is to pick out the words using the " other " hand. After the shoulder replacement, I had to type with the right hand (I'm a lefty) and it was not easy!) So sorry to hear that you have to leave your home. Don't I remember though that you had to go out and shovel snow, and that you fell on the ice more than once?? This move could turn out to be good Cat. I know you don't want to leave " home, " but, as you have no other choice, I am sure you will make the best of things...you always do. Could be there are too many memories there anyhow, and a fresh start will in the long run make you feel better...in some ways. So, the " man " didn't keep his word? Many of them don't, But, you will continue on, and when you get moved into the mobile at the end of February, well...you will make that your " home, " and I just know you will be happy again. Maybe not today, or tomorrow, but you will be happy, because that is your nature. That's one reason we all love you so much! You don't like some of the nasty things life hands out to you, but you keep going, you keep your sense of humor, and you still care about others. You are a fighter, and a survivor. Sometimes the " storm clouds " in life get so thick..we get lost, or can't see where we're going...but then things clear, and once again we keep moving along (be it ever so slow) on that road to where we know we will be " okay " once again. Just keep pushing on through those clouds Cat. Perhaps there will even be some pleasant surprises waiting for you in your future. I agree with Melt, sometimes, the way things happen...they are " blessings in disguise. " Please keep us as updated as you can, and remember, we love you!! Love and hugs for a sweetheart! from your friend, Tricia wega2@... update > greetings y'all > > well its been a wee while since i posted, but my e-mail has been down..i was able to pop into chat thurs for a few minutes..it was wonderful and frustrating...wonderful cause i got to natter at my great friends, frustrating cause i have to try and type with the left hand... > ah well......here goes > i have had to stop physio because my husband pardon...EX..has not lived up to his part of the agreement HE made with my buddy nancy while i was still out of it...all about money of course...so, i am terribly upset about not being able to have physio 2 or three times a week..but at 40 bucks a visit i just can't make it happen. my doctor is away and so getting a refferal to the hos[ital for physio may be a long time in the offing, and with the huge healthcare budget cuts....well i seem to be falling through the cracks...lol..and since i am 30lbs lighter since all of this i could very likely REALLY fall thru them thar cracks.... > the worst part is i cannot pay the rent this month...so will have to get out by the 15th i guess...the kids found me a mobile in salmon arm but not avaiable til end of feb...so we must pack up here take my things to their place then move it all again 2 weeks later and i am still pretty useless, what with the buggered up hand leg and STILL my back from the fall almost four weeks ago.... > so, my dear friends, things have not been easy, but, hopefully i will be able to get it all together soon..... > the nurses no longer have to come to change the dressing cause FINALLY the arm has healed..the adhesions are killer and the nerve damage more than i would have wished for ....BUT gibbled as it might be i still have the damned thing...lol...things could have so easily gone the other way that it's hard to be a sad sack...not in my nature to be down for long, but its been a rough old road, and more to get through in the weeks ahead. > okay pooped now...lol > much love, many smiles > cat > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Dear Cat, Thank you for checking in with us sweety! Still a Southpaw eh?? (I do understand how difficult it is to pick out the words using the " other " hand. After the shoulder replacement, I had to type with the right hand (I'm a lefty) and it was not easy!) So sorry to hear that you have to leave your home. Don't I remember though that you had to go out and shovel snow, and that you fell on the ice more than once?? This move could turn out to be good Cat. I know you don't want to leave " home, " but, as you have no other choice, I am sure you will make the best of things...you always do. Could be there are too many memories there anyhow, and a fresh start will in the long run make you feel better...in some ways. So, the " man " didn't keep his word? Many of them don't, But, you will continue on, and when you get moved into the mobile at the end of February, well...you will make that your " home, " and I just know you will be happy again. Maybe not today, or tomorrow, but you will be happy, because that is your nature. That's one reason we all love you so much! You don't like some of the nasty things life hands out to you, but you keep going, you keep your sense of humor, and you still care about others. You are a fighter, and a survivor. Sometimes the " storm clouds " in life get so thick..we get lost, or can't see where we're going...but then things clear, and once again we keep moving along (be it ever so slow) on that road to where we know we will be " okay " once again. Just keep pushing on through those clouds Cat. Perhaps there will even be some pleasant surprises waiting for you in your future. I agree with Melt, sometimes, the way things happen...they are " blessings in disguise. " Please keep us as updated as you can, and remember, we love you!! Love and hugs for a sweetheart! from your friend, Tricia wega2@... update > greetings y'all > > well its been a wee while since i posted, but my e-mail has been down..i was able to pop into chat thurs for a few minutes..it was wonderful and frustrating...wonderful cause i got to natter at my great friends, frustrating cause i have to try and type with the left hand... > ah well......here goes > i have had to stop physio because my husband pardon...EX..has not lived up to his part of the agreement HE made with my buddy nancy while i was still out of it...all about money of course...so, i am terribly upset about not being able to have physio 2 or three times a week..but at 40 bucks a visit i just can't make it happen. my doctor is away and so getting a refferal to the hos[ital for physio may be a long time in the offing, and with the huge healthcare budget cuts....well i seem to be falling through the cracks...lol..and since i am 30lbs lighter since all of this i could very likely REALLY fall thru them thar cracks.... > the worst part is i cannot pay the rent this month...so will have to get out by the 15th i guess...the kids found me a mobile in salmon arm but not avaiable til end of feb...so we must pack up here take my things to their place then move it all again 2 weeks later and i am still pretty useless, what with the buggered up hand leg and STILL my back from the fall almost four weeks ago.... > so, my dear friends, things have not been easy, but, hopefully i will be able to get it all together soon..... > the nurses no longer have to come to change the dressing cause FINALLY the arm has healed..the adhesions are killer and the nerve damage more than i would have wished for ....BUT gibbled as it might be i still have the damned thing...lol...things could have so easily gone the other way that it's hard to be a sad sack...not in my nature to be down for long, but its been a rough old road, and more to get through in the weeks ahead. > okay pooped now...lol > much love, many smiles > cat > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Dear Cat, Thanks so much for the update. We have all been quite worried about you. You are definitely a fighter and an inspiration to all of us. I wish you didn't have so much to deal with. The medical problems surely are enough to contend with. You are in my thoughts and prayers. Love, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Cat : just think they can kick ya down but I know ya will not stay there with out a fight and when you down just think of all the rung ya get to go up and all the love ya get from the darn things we call the kids so remember to live long and hard tell we become our brats trouble LOL but really glad to here from you and seeing that you are on the go one more time and in the end it all works out so take care and make it worth will Marty G and we be praying for ye update greetings y'all well its been a wee while since i posted, but my e-mail has been down..i was able to pop into chat thurs for a few minutes..it was wonderful and frustrating...wonderful cause i got to natter at my great friends, frustrating cause i have to try and type with the left hand... ah well......here goes i have had to stop physio because my husband pardon...EX..has not lived up to his part of the agreement HE made with my buddy nancy while i was still out of it...all about money of course...so, i am terribly upset about not being able to have physio 2 or three times a week..but at 40 bucks a visit i just can't make it happen. my doctor is away and so getting a refferal to the hos[ital for physio may be a long time in the offing, and with the huge healthcare budget cuts....well i seem to be falling through the cracks...lol..and since i am 30lbs lighter since all of this i could very likely REALLY fall thru them thar cracks.... the worst part is i cannot pay the rent this month...so will have to get out by the 15th i guess...the kids found me a mobile in salmon arm but not avaiable til end of feb...so we must pack up here take my things to their place then move it all again 2 weeks later and i am still pretty useless, what with the buggered up hand leg and STILL my back from the fall almost four weeks ago.... so, my dear friends, things have not been easy, but, hopefully i will be able to get it all together soon..... the nurses no longer have to come to change the dressing cause FINALLY the arm has healed..the adhesions are killer and the nerve damage more than i would have wished for ....BUT gibbled as it might be i still have the damned thing...lol...things could have so easily gone the other way that it's hard to be a sad sack...not in my nature to be down for long, but its been a rough old road, and more to get through in the weeks ahead. okay pooped now...lol much love, many smiles cat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Cat : just think they can kick ya down but I know ya will not stay there with out a fight and when you down just think of all the rung ya get to go up and all the love ya get from the darn things we call the kids so remember to live long and hard tell we become our brats trouble LOL but really glad to here from you and seeing that you are on the go one more time and in the end it all works out so take care and make it worth will Marty G and we be praying for ye update greetings y'all well its been a wee while since i posted, but my e-mail has been down..i was able to pop into chat thurs for a few minutes..it was wonderful and frustrating...wonderful cause i got to natter at my great friends, frustrating cause i have to try and type with the left hand... ah well......here goes i have had to stop physio because my husband pardon...EX..has not lived up to his part of the agreement HE made with my buddy nancy while i was still out of it...all about money of course...so, i am terribly upset about not being able to have physio 2 or three times a week..but at 40 bucks a visit i just can't make it happen. my doctor is away and so getting a refferal to the hos[ital for physio may be a long time in the offing, and with the huge healthcare budget cuts....well i seem to be falling through the cracks...lol..and since i am 30lbs lighter since all of this i could very likely REALLY fall thru them thar cracks.... the worst part is i cannot pay the rent this month...so will have to get out by the 15th i guess...the kids found me a mobile in salmon arm but not avaiable til end of feb...so we must pack up here take my things to their place then move it all again 2 weeks later and i am still pretty useless, what with the buggered up hand leg and STILL my back from the fall almost four weeks ago.... so, my dear friends, things have not been easy, but, hopefully i will be able to get it all together soon..... the nurses no longer have to come to change the dressing cause FINALLY the arm has healed..the adhesions are killer and the nerve damage more than i would have wished for ....BUT gibbled as it might be i still have the damned thing...lol...things could have so easily gone the other way that it's hard to be a sad sack...not in my nature to be down for long, but its been a rough old road, and more to get through in the weeks ahead. okay pooped now...lol much love, many smiles cat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 , you are being so strong to hang in there all these months! And it has been real good to visit and get to know you too. My hopes are this week will go very fast and you can get some resolution to your pain. I totally agree with your philosophy of keeping going. It is when all comes together at the same time that it gets just that bit overwhelming. You have my admiration and support. Let us know how your week goes, till soon, Luv, Melt Update > Hello Everyone, > > I haven't been on my computer much or keeping up with the group. I just > haven't been able to do everything that I would like to lately. > > I have been thinking about all of you. I have missed everyone. I hope > everyone is feeling wonderful and enjoying the weekend. > > I am still working. Thank Goodness! This is a battle but one that I am > winning so far. I started out pretty rocky. I missed 4 days since starting > back to work on Jan. 4. This was because of my awful back pain that I get. > I am lucky that I didn't lose my job because of these 4 abscences. I feel > blessed, someone is definitely looking out for me. I am trying my best to > grin and bare the pain and keep working. > > Going back to work has been good for me mentally and emotionally. However > physically I am in more pain, I am exhausted and my disease is worse. . > > Most of my joints have been stiff, swollen and painful. I feel tired and > weak most of the time. I have been getting my rash daily and sometimes it > itches. I am not feeling well at all. > > I feel that as long as I can keep a positive attitude I can keep working. If > I continue to have faith and hope I beleive that my quality of life can and > will get better. I can handle not feeling well as long as I don't feel down > or depressed. Feeling sick and down is the combination that ussually breaks > me. So far so good. I have managed to avoid this horrible combination. > > I have a lot of goals that I would like to accomplish. I can reach them if > I take one day at a time and give myself permission to accomplish these > goals at my own pace. Or should I say at the pace that my body will allow > me. I have to learn to be more patient with myself and my body. > > Since going back to work I have lost 15lbs and without even trying. Hurray > only 20 more pounds to go. > > I have an appointment on Tuesday with my Rheumy. I finnally have an > appointment with a new Pain Clinic on Wednesday. I am hoping that my Rheumy > will have some ideas that will help me feel better. Plus hopefully the new > Pain Clinic will adequately treat my pain. Then I am hoping that I will > start feeling better again and working won't be so difficult for me. > > Thanks for listening and as always thanks for all of the wonderful support. > I am going to try and stay in touch with the group as much as I can. Right > now I am finding it hard to keep up. I am sure I will become more active > when I am feeling better. Just know that all of you are in my thoughts and > prayers. I wish everyone the best. > > Love, > > > jatw@... > > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 , you are being so strong to hang in there all these months! And it has been real good to visit and get to know you too. My hopes are this week will go very fast and you can get some resolution to your pain. I totally agree with your philosophy of keeping going. It is when all comes together at the same time that it gets just that bit overwhelming. You have my admiration and support. Let us know how your week goes, till soon, Luv, Melt Update > Hello Everyone, > > I haven't been on my computer much or keeping up with the group. I just > haven't been able to do everything that I would like to lately. > > I have been thinking about all of you. I have missed everyone. I hope > everyone is feeling wonderful and enjoying the weekend. > > I am still working. Thank Goodness! This is a battle but one that I am > winning so far. I started out pretty rocky. I missed 4 days since starting > back to work on Jan. 4. This was because of my awful back pain that I get. > I am lucky that I didn't lose my job because of these 4 abscences. I feel > blessed, someone is definitely looking out for me. I am trying my best to > grin and bare the pain and keep working. > > Going back to work has been good for me mentally and emotionally. However > physically I am in more pain, I am exhausted and my disease is worse. . > > Most of my joints have been stiff, swollen and painful. I feel tired and > weak most of the time. I have been getting my rash daily and sometimes it > itches. I am not feeling well at all. > > I feel that as long as I can keep a positive attitude I can keep working. If > I continue to have faith and hope I beleive that my quality of life can and > will get better. I can handle not feeling well as long as I don't feel down > or depressed. Feeling sick and down is the combination that ussually breaks > me. So far so good. I have managed to avoid this horrible combination. > > I have a lot of goals that I would like to accomplish. I can reach them if > I take one day at a time and give myself permission to accomplish these > goals at my own pace. Or should I say at the pace that my body will allow > me. I have to learn to be more patient with myself and my body. > > Since going back to work I have lost 15lbs and without even trying. Hurray > only 20 more pounds to go. > > I have an appointment on Tuesday with my Rheumy. I finnally have an > appointment with a new Pain Clinic on Wednesday. I am hoping that my Rheumy > will have some ideas that will help me feel better. Plus hopefully the new > Pain Clinic will adequately treat my pain. Then I am hoping that I will > start feeling better again and working won't be so difficult for me. > > Thanks for listening and as always thanks for all of the wonderful support. > I am going to try and stay in touch with the group as much as I can. Right > now I am finding it hard to keep up. I am sure I will become more active > when I am feeling better. Just know that all of you are in my thoughts and > prayers. I wish everyone the best. > > Love, > > > jatw@... > > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Dear , You are to be commended!!! You have a wonderful positive attitude, and you are such an inspiration!!!!!!! Hopefully, you get those pain meds you need to make life less painful. Continue to hang in there my friend, I am thinking of you..and you have a special place in my heart, and my prayers. Love you, tricia -- Update Hello Everyone, I haven't been on my computer much or keeping up with the group. I just haven't been able to do everything that I would like to lately. I have been thinking about all of you. I have missed everyone. I hope everyone is feeling wonderful and enjoying the weekend. I am still working. Thank Goodness! This is a battle but one that I am winning so far. I started out pretty rocky. I missed 4 days since starting back to work on Jan. 4. This was because of my awful back pain that I get. I am lucky that I didn't lose my job because of these 4 abscences. I feel blessed, someone is definitely looking out for me. I am trying my best to grin and bare the pain and keep working. Going back to work has been good for me mentally and emotionally. However physically I am in more pain, I am exhausted and my disease is worse. . Most of my joints have been stiff, swollen and painful. I feel tired and weak most of the time. I have been getting my rash daily and sometimes it itches. I am not feeling well at all. I feel that as long as I can keep a positive attitude I can keep working. If I continue to have faith and hope I beleive that my quality of life can and will get better. I can handle not feeling well as long as I don't feel down or depressed. Feeling sick and down is the combination that ussually breaks me. So far so good. I have managed to avoid this horrible combination. I have a lot of goals that I would like to accomplish. I can reach them if I take one day at a time and give myself permission to accomplish these goals at my own pace. Or should I say at the pace that my body will allow me. I have to learn to be more patient with myself and my body. Since going back to work I have lost 15lbs and without even trying. Hurray only 20 more pounds to go. I have an appointment on Tuesday with my Rheumy. I finnally have an appointment with a new Pain Clinic on Wednesday. I am hoping that my Rheumy will have some ideas that will help me feel better. Plus hopefully the new Pain Clinic will adequately treat my pain. Then I am hoping that I will start feeling better again and working won't be so difficult for me. Thanks for listening and as always thanks for all of the wonderful support. I am going to try and stay in touch with the group as much as I can. Right now I am finding it hard to keep up. I am sure I will become more active when I am feeling better. Just know that all of you are in my thoughts and prayers. I wish everyone the best. Love, jatw@... Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Dear , You are to be commended!!! You have a wonderful positive attitude, and you are such an inspiration!!!!!!! Hopefully, you get those pain meds you need to make life less painful. Continue to hang in there my friend, I am thinking of you..and you have a special place in my heart, and my prayers. Love you, tricia -- Update Hello Everyone, I haven't been on my computer much or keeping up with the group. I just haven't been able to do everything that I would like to lately. I have been thinking about all of you. I have missed everyone. I hope everyone is feeling wonderful and enjoying the weekend. I am still working. Thank Goodness! This is a battle but one that I am winning so far. I started out pretty rocky. I missed 4 days since starting back to work on Jan. 4. This was because of my awful back pain that I get. I am lucky that I didn't lose my job because of these 4 abscences. I feel blessed, someone is definitely looking out for me. I am trying my best to grin and bare the pain and keep working. Going back to work has been good for me mentally and emotionally. However physically I am in more pain, I am exhausted and my disease is worse. . Most of my joints have been stiff, swollen and painful. I feel tired and weak most of the time. I have been getting my rash daily and sometimes it itches. I am not feeling well at all. I feel that as long as I can keep a positive attitude I can keep working. If I continue to have faith and hope I beleive that my quality of life can and will get better. I can handle not feeling well as long as I don't feel down or depressed. Feeling sick and down is the combination that ussually breaks me. So far so good. I have managed to avoid this horrible combination. I have a lot of goals that I would like to accomplish. I can reach them if I take one day at a time and give myself permission to accomplish these goals at my own pace. Or should I say at the pace that my body will allow me. I have to learn to be more patient with myself and my body. Since going back to work I have lost 15lbs and without even trying. Hurray only 20 more pounds to go. I have an appointment on Tuesday with my Rheumy. I finnally have an appointment with a new Pain Clinic on Wednesday. I am hoping that my Rheumy will have some ideas that will help me feel better. Plus hopefully the new Pain Clinic will adequately treat my pain. Then I am hoping that I will start feeling better again and working won't be so difficult for me. Thanks for listening and as always thanks for all of the wonderful support. I am going to try and stay in touch with the group as much as I can. Right now I am finding it hard to keep up. I am sure I will become more active when I am feeling better. Just know that all of you are in my thoughts and prayers. I wish everyone the best. Love, jatw@... Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Dear , You are to be commended!!! You have a wonderful positive attitude, and you are such an inspiration!!!!!!! Hopefully, you get those pain meds you need to make life less painful. Continue to hang in there my friend, I am thinking of you..and you have a special place in my heart, and my prayers. Love you, tricia -- Update Hello Everyone, I haven't been on my computer much or keeping up with the group. I just haven't been able to do everything that I would like to lately. I have been thinking about all of you. I have missed everyone. I hope everyone is feeling wonderful and enjoying the weekend. I am still working. Thank Goodness! This is a battle but one that I am winning so far. I started out pretty rocky. I missed 4 days since starting back to work on Jan. 4. This was because of my awful back pain that I get. I am lucky that I didn't lose my job because of these 4 abscences. I feel blessed, someone is definitely looking out for me. I am trying my best to grin and bare the pain and keep working. Going back to work has been good for me mentally and emotionally. However physically I am in more pain, I am exhausted and my disease is worse. . Most of my joints have been stiff, swollen and painful. I feel tired and weak most of the time. I have been getting my rash daily and sometimes it itches. I am not feeling well at all. I feel that as long as I can keep a positive attitude I can keep working. If I continue to have faith and hope I beleive that my quality of life can and will get better. I can handle not feeling well as long as I don't feel down or depressed. Feeling sick and down is the combination that ussually breaks me. So far so good. I have managed to avoid this horrible combination. I have a lot of goals that I would like to accomplish. I can reach them if I take one day at a time and give myself permission to accomplish these goals at my own pace. Or should I say at the pace that my body will allow me. I have to learn to be more patient with myself and my body. Since going back to work I have lost 15lbs and without even trying. Hurray only 20 more pounds to go. I have an appointment on Tuesday with my Rheumy. I finnally have an appointment with a new Pain Clinic on Wednesday. I am hoping that my Rheumy will have some ideas that will help me feel better. Plus hopefully the new Pain Clinic will adequately treat my pain. Then I am hoping that I will start feeling better again and working won't be so difficult for me. Thanks for listening and as always thanks for all of the wonderful support. I am going to try and stay in touch with the group as much as I can. Right now I am finding it hard to keep up. I am sure I will become more active when I am feeling better. Just know that all of you are in my thoughts and prayers. I wish everyone the best. Love, jatw@... Visit the Still's Disease Message Board http://disc.server.com/Indices/148599.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 , you always amaze me, and like you, have changed my attitude on my outlook with this disease, and I swear it's helping, really. You have come so far, and to keep in touch with the group is a wonderful thing also, you are never forgotten here, no matter how busy that you get. It is wonderful to hear you and see your positive attitude. I am hoping that your new pain clinic works out as well for you friend. I know how devastating the results from the last one, were to you. , be well and keep us the wonderful work and the success in such a short time. Love you. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 , you always amaze me, and like you, have changed my attitude on my outlook with this disease, and I swear it's helping, really. You have come so far, and to keep in touch with the group is a wonderful thing also, you are never forgotten here, no matter how busy that you get. It is wonderful to hear you and see your positive attitude. I am hoping that your new pain clinic works out as well for you friend. I know how devastating the results from the last one, were to you. , be well and keep us the wonderful work and the success in such a short time. Love you. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 , you always amaze me, and like you, have changed my attitude on my outlook with this disease, and I swear it's helping, really. You have come so far, and to keep in touch with the group is a wonderful thing also, you are never forgotten here, no matter how busy that you get. It is wonderful to hear you and see your positive attitude. I am hoping that your new pain clinic works out as well for you friend. I know how devastating the results from the last one, were to you. , be well and keep us the wonderful work and the success in such a short time. Love you. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Dear Kim, So glad you are back home! There really is no place like home is there?? So sorry to read that you were in the hospital while trying to get some business ends tied up. Sounds like you deserve a much needed rest Kim. Please rest now as much as possible. Know we love you and we care. Your friend, ~~tricia~~ WWW (We Will Win) -- Update Hi to all my fellow stilligans!! I hope everyone is doing well. I have really had a hard time both physically and emotionally. I went to Va Beach to do some work for my parents business and ended up stuck there in the hospital. It was terrible. None of the doctors knew me or my case and it was almost like starting from scratch. Even though they consulted my doctors in Charlottesville...they all had their own ideas. Anyway, I'm home now and doing much better. I'm soooo glad to be back and feeling better. I was supposed to see Dr. Cush on Monday but was advised not to travel right now.. until I've had more good days. So, I'll be having a phone consultation with him instead. I knew I was pushing it...I was drinking 2 pots of coffee a day just to keep going...I know that's not good, but I don't know what else I'm supposed to do. I have a 2yr old to take care of and a daughter. I can't afford a nanny and I have no family where I live. I can't just stay in bed all day. Also I telecommute for my parents business and I need the income so I can't just stop that as well. My husband is still working two jobs....so it's like being a single parent. Anyway, I'm sure you all don't want to hear all about my problems and they are probably nothing compared to what some of you are going through. I haven't been on line or read any email lately so I have no idea how everyone is. I see some subjects about the conference. I hope that s still on. I will go back and try to read some. Bob, I did get your brochures and they are fabulous!!!!!!!! So informative and it's the right information...you know what I mean. You included what was important to know for those that have never heard of Still's in a way they would understand. They are just perfect and I can't wait to give a few to my doctors! I can tell you put a lot of time, thought and effort into them. You did an outstanding job. This group is lucky to have you. Well, I'm going to go back to bed for a bit. I probably won't be real active for a while but I will try to pop in now and then. Rest is at the top of my list for now. Take good care! Love you All, Kim Daves (Charlottesville, VA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 Dear , I am thrilled that the Remicade seems to be helping you!! You sound so much better than..say..last year this time. You are a trooper that's for sure! Is there any possibility that you would be thinking of making it to the Vegas Stills conference?? You will be relieved when that surgery is over and done with. I remember back when I had it done for the same reasons you are, and it was such a great relief to have it over and done with. Many things in life were better afterwards. Thank you for the update. It's really nice when someone gives an update from time to time, so we don't start to worry that something really bad has possibly happened to them. Love, hugs, prayers Your friend~~tricia~~ -- Update Hey there all, I am just dropping a quick note to tell you that I have been ok. I sure do love that Remicade. I did ok with that head thing I got the last time I went in for a IV. And now wouldn't you know it that it is time for another one I am getting another head cold. That is ok I will be well enough to get through this too. My next one is on the 4th. My doctor wanted me to call and let him know when I " run out " of Remicade and so I called him on Friday. I ran out about three weeks ago. Yesterday they called and he is upping mine to 5 units. I am not sure how they are measuring it. So asked how much I was getting before and she said that I was getting 3. So that is almost twice as much. I hope it carries me through the end. He said if this does not make it all the way, they will shorten my time from IV to IV. As far as the rest I am ok. Still hurting but a lot less than before. Just a few more months and I can go get a hysterectomy and be done with my cycles and how they make me feel. I hope that everybody is doing good. Do you ICQ? I do! My number is 145599444. Drop me a note:) How about Yahoo IM, I am bigred82799. Also find me on MSN Messenger with my email address or Bigred. ~~I HOPE YOU DANCE~~ crimsons@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Oh Kate, we are so very sorry your birthday wishes are late. Happy Birthday dear. Since you are 18 all year I guess it's not tooooo late? lol. Rest up today and you will be better to do your paper. And don't frett too much about one missed appointment. Do you have a daily planner? That might help or silly as it sounds one of my sister puts a calender in her bathroom so she sees her appointments each day while dressing. Good luck with the week and talk with you soon, Patty update > Hi everyone. I hope you are all having a nice day, and those that arent so > well, my thoughts are with you and get well soon! > > I thought id send an update about this week, which has been pretty hectic! > It was my 18th birthday on April 12th (Fri) and so my birthday weekend was > pretty busy! Last night some friends and I hired a mini bus and we went to > a big nightclub out of town...which was a lot of fun but I am feeling so > 'overdone' today! I can hardly walk today, it must have been my heels > lol. In the midst of things I really feel terrible about it, but i missed a > doctors appointment, I just dont know how it slipped my mind, ive been doing > that a lot lately, forgetting and misplacing things, its rather worrying, i > think it may be the increase in pred? Im not sure. > > So i feel v. silly for overdoing things this weekend, since i also have a > big piece of work due in on friday, and i really do not know how i am going > to manage it, it takes so much for me to be able to sit down and concentrate > hard enough to get things done properly! > > , Kim, Marty, Terri...all those who are not very well at the moment > (sorry if i missed anyone!) im thinking of you and wish you well...till > soon, lots of love, Kate xxx > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > Quote Link to comment Share on other sites More sharing options...
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