Guest guest Posted December 3, 2007 Report Share Posted December 3, 2007 Marla, Lady, I know where you are at. I count myself "lucky" because I've not advanced to losing the use of my legs. This last year has been such a challenge for so many of us. Even on the best of the best meds that they have to offer, I know I've had to learn to deal with the fact that I can't get back what I've lost. That has been most difficult for me. In total honesty, this entire year I've felt that this would be my last one on earth. I've been holding that inside--and I am trying really hard to change and allow myself the concept that this isn't my last year here-- and that I need to do what I can to take better care of me. I ask myself often, is this the depression that comes with chronic illness, is this the illness taking over parts of my brain that are the comprehension center for these issues-- what is the key? I believe whole heartedly that we are going to have to find a way to fight our insurance companies and if that means we contact our local legislatures, congressmen, unions, than that is what we have to do. I know that each of you reading this is going-- yea sure, and I don't have the energy to get a shower. I get it. I'm with you. I'm also not going to stop fighting. This next year will be interesting for me-- I know that my insurance that has paid for my Remicade is now going up to $110 per 3 infusions, plus an additional copay percentage. Damned if I know what it will be. I know that some of you would gladly pay $110-- as you are paying so much more. For us, I'm not sure I can rub the magic pennies together and come up with much more. Sigh. What I have seen with the Remicade is that I had to increase the dosage and am now at a maximum dose of 10mg/kg-- and this is the top. It has stopped the lymphatic swelling that I got the last week prior to the next infusion (each 28 days in my case.) Still I fight the osteoarthriitis pain that years of playing catcher for womens fast pitch softball has done to my hands. The sarc has attacked my ankles,so walking is becoming more painful. One thing that is helping is that I'm starting on eliminating as much of the foods that are known to cause inflammation. I'm taking them out one at a time-- and see what works. This has been and continues to be an ongoing process. Anyway, I think I got off topic-- which was Marla's fight with her insurance and the fact that for the last 90 days- they've been playing Badmitten with her life. My dear friend, mentally paint their faces on the Birdie-- and hit that sucker right back at them. Hugs, Tracie NS Co-owner/moderatorCheck out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2007 Report Share Posted December 3, 2007 Marla, Lady, I know where you are at. I count myself "lucky" because I've not advanced to losing the use of my legs. This last year has been such a challenge for so many of us. Even on the best of the best meds that they have to offer, I know I've had to learn to deal with the fact that I can't get back what I've lost. That has been most difficult for me. In total honesty, this entire year I've felt that this would be my last one on earth. I've been holding that inside--and I am trying really hard to change and allow myself the concept that this isn't my last year here-- and that I need to do what I can to take better care of me. I ask myself often, is this the depression that comes with chronic illness, is this the illness taking over parts of my brain that are the comprehension center for these issues-- what is the key? I believe whole heartedly that we are going to have to find a way to fight our insurance companies and if that means we contact our local legislatures, congressmen, unions, than that is what we have to do. I know that each of you reading this is going-- yea sure, and I don't have the energy to get a shower. I get it. I'm with you. I'm also not going to stop fighting. This next year will be interesting for me-- I know that my insurance that has paid for my Remicade is now going up to $110 per 3 infusions, plus an additional copay percentage. Damned if I know what it will be. I know that some of you would gladly pay $110-- as you are paying so much more. For us, I'm not sure I can rub the magic pennies together and come up with much more. Sigh. What I have seen with the Remicade is that I had to increase the dosage and am now at a maximum dose of 10mg/kg-- and this is the top. It has stopped the lymphatic swelling that I got the last week prior to the next infusion (each 28 days in my case.) Still I fight the osteoarthriitis pain that years of playing catcher for womens fast pitch softball has done to my hands. The sarc has attacked my ankles,so walking is becoming more painful. One thing that is helping is that I'm starting on eliminating as much of the foods that are known to cause inflammation. I'm taking them out one at a time-- and see what works. This has been and continues to be an ongoing process. Anyway, I think I got off topic-- which was Marla's fight with her insurance and the fact that for the last 90 days- they've been playing Badmitten with her life. My dear friend, mentally paint their faces on the Birdie-- and hit that sucker right back at them. Hugs, Tracie NS Co-owner/moderatorCheck out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Thank you for ALL the support you give me, I am blessed to have you in my life, and you have to hang in there so that some day we can meet and hug for reals. Check out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Thank you for ALL the support you give me, I am blessed to have you in my life, and you have to hang in there so that some day we can meet and hug for reals. Check out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Dear Tracie, Depression certainly comes with a chronic disease, do you have a counselor, you should have some one you can talk to. Boy I sure let lose on the OT I just started working with, she asked me something can’t even remember now, and the flood gates opened, she was so sweet to listen, we did not do anything OT ish, she asked me if I had a counselor and I said yes, and I will make an appointment with him too, she was sweet to listen then suggest a counselor, so maybe this week I will actually get some OT done. You should find someone to talk to and help you, I think you are a very brave wonderful, supporting person, and you are always here for this Sarc family, know we are here for you too. We deal with a lot of “stuff”, and yes some of us might think $110 is nothing, but if that is the food money then yes it is something. So hard sometimes to know what to do. For me it is my God who keeps me going, he feels me with the Holy Spirit, there is no other way to explain that I don’t suffer from the fatigue anymore, a miracle for me, so I am thankful for every day I have, and you know when we really think about it, none of know when our last day comes, it might be an auto accident, so we need to live each day like it is our last, and then wake up thankful that we have the start of a brand new day, what a blessing. Tracie I know this is hard to do, but it’s what gets me through each day, at night I lay in bed and thank God that all are safe and home and healthy, and that I made it through another day as well, then every morning I ask God to protect my family and keep them safe, and each day he does, that is how I get through the days, when my leg is not working I just throw it around, getting in out of cars these days is a challenge, and people will say can I help, and I just say no I got it, grab my leg and throw it into the car, some days I’m throwing both of them into the car, it’s funny because I can’t lift my legs, so I asked the doc how in the heck am I still walking, and he said “I don’t know”, and he told me I should start doing stairs on my butt especially going down, LOL, what a picture that would be! But I think again it’s the Holy Spirit from God that allows me to walk, and sometimes I can’t walk, so my husbands just drabs me around, LOL Tracie, don’t allow yourself to even think, maybe this is my last day, or I wonder how much longer you have, just live today with what you have today, write those notes you’ve been thinking about, call that friend that’s on your mind, today is just that today, yesterday is gone, and tomorrow, well basically it’s “tomorrow”! So girlfriend live today likes it’s the last day of your life! Hmm I should write a song, oh ya I can’t sing worth a damm. Love to you Tracie and to all, Marla And…. Thank you for ALL the support you give me, I am blessed to have you in my life, and you have to hang in there so that some day we can meet and hug for reals. From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, December 03, 2007 5:10 PM To: Neurosarcoidosis Subject: Re: Progression Marla, Lady, I know where you are at. I count myself " lucky " because I've not advanced to losing the use of my legs. This last year has been such a challenge for so many of us. Even on the best of the best meds that they have to offer, I know I've had to learn to deal with the fact that I can't get back what I've lost. That has been most difficult for me. In total honesty, this entire year I've felt that this would be my last one on earth. I've been holding that inside--and I am trying really hard to change and allow myself the concept that this isn't my last year here-- and that I need to do what I can to take better care of me. I ask myself often, is this the depression that comes with chronic illness, is this the illness taking over parts of my brain that are the comprehension center for these issues-- what is the key? I believe whole heartedly that we are going to have to find a way to fight our insurance companies and if that means we contact our local legislatures, congressmen, unions, than that is what we have to do. I know that each of you reading this is going-- yea sure, and I don't have the energy to get a shower. I get it. I'm with you. I'm also not going to stop fighting. This next year will be interesting for me-- I know that my insurance that has paid for my Remicade is now going up to $110 per 3 infusions, plus an additional copay percentage. Damned if I know what it will be. I know that some of you would gladly pay $110-- as you are paying so much more. For us, I'm not sure I can rub the magic pennies together and come up with much more. Sigh. What I have seen with the Remicade is that I had to increase the dosage and am now at a maximum dose of 10mg/kg-- and this is the top. It has stopped the lymphatic swelling that I got the last week prior to the next infusion (each 28 days in my case.) Still I fight the osteoarthriitis pain that years of playing catcher for womens fast pitch softball has done to my hands. The sarc has attacked my ankles,so walking is becoming more painful. One thing that is helping is that I'm starting on eliminating as much of the foods that are known to cause inflammation. I'm taking them out one at a time-- and see what works. This has been and continues to be an ongoing process. Anyway, I think I got off topic-- which was Marla's fight with her insurance and the fact that for the last 90 days- they've been playing Badmitten with her life. My dear friend, mentally paint their faces on the Birdie-- and hit that sucker right back at them. Hugs, Tracie NS Co-owner/moderator Check out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Dear Tracie, Depression certainly comes with a chronic disease, do you have a counselor, you should have some one you can talk to. Boy I sure let lose on the OT I just started working with, she asked me something can’t even remember now, and the flood gates opened, she was so sweet to listen, we did not do anything OT ish, she asked me if I had a counselor and I said yes, and I will make an appointment with him too, she was sweet to listen then suggest a counselor, so maybe this week I will actually get some OT done. You should find someone to talk to and help you, I think you are a very brave wonderful, supporting person, and you are always here for this Sarc family, know we are here for you too. We deal with a lot of “stuff”, and yes some of us might think $110 is nothing, but if that is the food money then yes it is something. So hard sometimes to know what to do. For me it is my God who keeps me going, he feels me with the Holy Spirit, there is no other way to explain that I don’t suffer from the fatigue anymore, a miracle for me, so I am thankful for every day I have, and you know when we really think about it, none of know when our last day comes, it might be an auto accident, so we need to live each day like it is our last, and then wake up thankful that we have the start of a brand new day, what a blessing. Tracie I know this is hard to do, but it’s what gets me through each day, at night I lay in bed and thank God that all are safe and home and healthy, and that I made it through another day as well, then every morning I ask God to protect my family and keep them safe, and each day he does, that is how I get through the days, when my leg is not working I just throw it around, getting in out of cars these days is a challenge, and people will say can I help, and I just say no I got it, grab my leg and throw it into the car, some days I’m throwing both of them into the car, it’s funny because I can’t lift my legs, so I asked the doc how in the heck am I still walking, and he said “I don’t know”, and he told me I should start doing stairs on my butt especially going down, LOL, what a picture that would be! But I think again it’s the Holy Spirit from God that allows me to walk, and sometimes I can’t walk, so my husbands just drabs me around, LOL Tracie, don’t allow yourself to even think, maybe this is my last day, or I wonder how much longer you have, just live today with what you have today, write those notes you’ve been thinking about, call that friend that’s on your mind, today is just that today, yesterday is gone, and tomorrow, well basically it’s “tomorrow”! So girlfriend live today likes it’s the last day of your life! Hmm I should write a song, oh ya I can’t sing worth a damm. Love to you Tracie and to all, Marla And…. Thank you for ALL the support you give me, I am blessed to have you in my life, and you have to hang in there so that some day we can meet and hug for reals. From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, December 03, 2007 5:10 PM To: Neurosarcoidosis Subject: Re: Progression Marla, Lady, I know where you are at. I count myself " lucky " because I've not advanced to losing the use of my legs. This last year has been such a challenge for so many of us. Even on the best of the best meds that they have to offer, I know I've had to learn to deal with the fact that I can't get back what I've lost. That has been most difficult for me. In total honesty, this entire year I've felt that this would be my last one on earth. I've been holding that inside--and I am trying really hard to change and allow myself the concept that this isn't my last year here-- and that I need to do what I can to take better care of me. I ask myself often, is this the depression that comes with chronic illness, is this the illness taking over parts of my brain that are the comprehension center for these issues-- what is the key? I believe whole heartedly that we are going to have to find a way to fight our insurance companies and if that means we contact our local legislatures, congressmen, unions, than that is what we have to do. I know that each of you reading this is going-- yea sure, and I don't have the energy to get a shower. I get it. I'm with you. I'm also not going to stop fighting. This next year will be interesting for me-- I know that my insurance that has paid for my Remicade is now going up to $110 per 3 infusions, plus an additional copay percentage. Damned if I know what it will be. I know that some of you would gladly pay $110-- as you are paying so much more. For us, I'm not sure I can rub the magic pennies together and come up with much more. Sigh. What I have seen with the Remicade is that I had to increase the dosage and am now at a maximum dose of 10mg/kg-- and this is the top. It has stopped the lymphatic swelling that I got the last week prior to the next infusion (each 28 days in my case.) Still I fight the osteoarthriitis pain that years of playing catcher for womens fast pitch softball has done to my hands. The sarc has attacked my ankles,so walking is becoming more painful. One thing that is helping is that I'm starting on eliminating as much of the foods that are known to cause inflammation. I'm taking them out one at a time-- and see what works. This has been and continues to be an ongoing process. Anyway, I think I got off topic-- which was Marla's fight with her insurance and the fact that for the last 90 days- they've been playing Badmitten with her life. My dear friend, mentally paint their faces on the Birdie-- and hit that sucker right back at them. Hugs, Tracie NS Co-owner/moderator Check out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
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