RE: life can really suck

[Guest guest]

Marla, these are the times that you need the BSF (Bootstrap Fairies). When you don't have the energy or will to pull up those bootstraps & keep on, call on the Fairies! Remember that I am, myself, a certified BSF. So you just give that child a hug when she comes home, get some rest, and by tomorrow, some fairy dust will have dissolved some of the tension.

Ramblin' RoseModerator COLTS STILL ROCK!

To: neurosarcoidosis From: mebramer@...Date: Wed, 2 Feb 2011 17:10:48 -0700Subject: life can really suck

After fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed. now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so. Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact, he has now picked her up and taking her out to dinner to pick her brain. He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings. It's cold here, as everywhere I know, actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry. Need to pull up my boot straps:) and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

1 of 1 Photo(s)

[Guest guest]

Marla, I think teenage girls can be very mean & cold-hearted, much more so than boys. Between my two girls & two granddaughters, I've been where you are. Keep praying for her, and for you. I will be doing the same.

Ramblin' RoseModerator COLTS STILL ROCK!

To: Neurosarcoidosis From: mebramer@...Date: Thu, 3 Feb 2011 10:54:07 -0700Subject: Re: life can really suck

Rose,Thank you, I love the picture, it put a smile on my face today. She didn't want to have anything to do with me when she got home, and the funny thing is this whole thing started with her Dad telling her to go out and scoop the snow of the sidewalk, go figure, she just went up and got in the shower as I heard from her brothers that she found a friend to hand out with her at the local park in the bathroom, and I'm sure she was as cold as she has ever been, the yesterday was 7. I really need to just cool down, she told my son she felt really bad, so I'm sure that is why she avoided me. But I heard her come down the stairs when her Dad said if you want a ride to school, you better get down here right now. I hurt so bad today I could hardly get out of bed, so think I'm going to turn my electric chair blanket on, warm up the neck thing, and sit in the chair and watch TV all day, of course I have to go out and pick up my child from school, I remember walking home from school or riding the bus:) How are you doing out there, warming up any for you? Man the weather has been crazy, my niece in Calif. said there weather is great, for a change, not a lot of rain, and a bit cool, she said it's in the low 70's so everyone here is wearing there coats, lol I hope you all are getting a break too. Thanks again for the support and smile. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Attachment(s) from Rose included below] Marla, these are the times that you need the BSF (Bootstrap Fairies). When you don't have the energy or will to pull up those bootstraps & keep on, call on the Fairies! Remember that I am, myself, a certified BSF. So you just give that child a hug when she comes home, get some rest, and by tomorrow, some fairy dust will have dissolved some of the tension.

Ramblin' RoseModerator COLTS STILL ROCK!

To: neurosarcoidosis From: mebramer@...Date: Wed, 2 Feb 2011 17:10:48 -0700Subject: life can really suckAfter fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed. now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so. Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact, he has now picked her up and taking her out to dinner to pick her brain. He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings. It's cold here, as everywhere I know, actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry. Need to pull up my boot straps:) and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Guest guest]

Hang in there Marla. Know that you are not alonein this fight. I went to the Neurologist yesterday and there is still a lot of inflammation in my eyes and brain. So now my prednisone has ben moved back to 60 mg (was down to 20 mg). I am not liking this because I have already gained 40 pounds after being on the steroids now for six months. The doctors want to give me remicade but I do not have insurance and cannot afford to get the medication. On top of all of that I have been really depressed. Cannot afford to get medication for depression either. I am just so disgusted and frustrated!!!! I want my life back and I am tired of always feeling like crap and being sick. So back to the 60 mg of steroids and more weight gain. I look and feel like a big cow because of the weight.

To: NS <neurosarcoidosis >Sent: Wed, February 2, 2011 7:10:48 PMSubject: life can really suck

After fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed. now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so. Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact, he has now picked her up and taking her out to dinner to pick her brain. He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings. It's cold here, as everywhere I know,

actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry. Need to pull up my boot straps:) and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Guest guest]

Marla I too have a 15 year old boy. I dont have the attitudes but just found out that he was having sex. I know he is a teenager but as a mom I just really wanted him to wait. There is so much disease and other stuff out here that I did not want him to have to deal with that yet. He is a very good basketball player and a jock in school. So I guess it was bound to happen. I am just not liking it. But Daddy and I have talked to him again and again so I just pray that he is careful. All we can do is pray for our teenagers and keep them in the right direction. Hang in there.

To: neurosarcoidosis Sent: Thu, February 3, 2011 3:17:39 PMSubject: RE: life can really suck

Marla, I think teenage girls can be very mean & cold-hearted, much more so than boys. Between my two girls & two granddaughters, I've been where you are. Keep praying for her, and for you. I will be doing the same.

Ramblin' RoseModerator COLTS STILL ROCK!

To: Neurosarcoidosis From: mebramer@...Date: Thu, 3 Feb 2011 10:54:07 -0700Subject: Re: life can really suckRose,Thank you, I love the picture, it put a smile on my face today. She didn't want to have anything to do with me when she got home, and the funny thing is this whole thing started with her Dad telling her to go out and scoop the snow of the sidewalk, go figure, she just went up and got in the shower as I heard from her brothers that she found a friend to hand out with her at the local park in the bathroom, and I'm sure she was as cold as she has ever been, the yesterday was 7. I really need to just cool down, she told my son she felt really bad, so I'm sure that is why she avoided me. But I heard her come down the stairs when her Dad said if you want a ride to school, you better get down here right now. I hurt so bad today I could hardly get out of bed,

so think I'm going to turn my electric chair blanket on, warm up the neck thing, and sit in the chair and watch TV all day, of course I have to go out and pick up my child from school, I remember walking home from school or riding the bus:) How are you doing out there, warming up any for you? Man the weather has been crazy, my niece in Calif. said there weather is great, for a change, not a lot of rain, and a bit cool, she said it's in the low 70's so everyone here is wearing there coats, lol I hope you all are getting a break too. Thanks again for the support and smile. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Attachment(s) from Rose included below] Marla, these are the times that you need the BSF (Bootstrap Fairies). When you don't have the energy or will to pull up those bootstraps & keep on, call on the Fairies! Remember that I am, myself, a certified BSF. So you just give that child a hug when she comes home, get some rest, and by tomorrow, some fairy dust will have dissolved some of the tension.

Ramblin' RoseModerator COLTS STILL ROCK!

To: neurosarcoidosis From: mebramer@...Date: Wed, 2 Feb 2011 17:10:48 -0700Subject: life can really suckAfter fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed. now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so. Then today after having a talk with my daughter about some things happening here, she left,

out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact, he has now picked her up and taking her out to dinner to pick her brain. He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings. It's cold here, as everywhere I know, actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry. Need to pull up my boot straps:) and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a

tomorrow, as that too is just today:)

[Guest guest]

I am Thank you, I will get the Remicade tomorrow, so just 24 hrs.  I think you can go online to the company  that makes Remicade and fill out an assistance application, you may be able to get it free from the company.  Same with Anti-depressants most companies will help you if you need it.

I applied but my husband makes too much, so we get caught in the middle, we have an HSA with our Insurance, we pay the first $6000, then they pay 100%, so just charged $4000 yesterday toward our deductible for one dose of Remicade, it's crazy.

But give it a try.  MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Hang in there Marla. Know that you are not alonein this fight. I went to the Neurologist yesterday and there is still a lot of inflammation in my eyes and brain. So now my prednisone has ben moved back to 60 mg (was down to 20 mg). I am not liking this because I have already gained 40 pounds after being on the steroids now for six months. The doctors want to give me remicade but I do not have insurance and cannot afford to get the medication. On top of all of that I have been really depressed. Cannot afford to get medication for depression either. I am just so disgusted and frustrated!!!! I want my life back and I am tired of always feeling like crap and being sick. So back to the 60 mg of steroids and more weight gain. I look and feel like a big cow because of the weight.

To: NS <neurosarcoidosis >

Sent: Wed, February 2, 2011 7:10:48 PMSubject: life can really suck

 

After fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed.

now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I  talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so.

Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact,

he has now picked her up and taking her out to dinner to pick her brain.  He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings.  It's cold here, as everywhere I know,

actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. 

I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry.  Need to pull up my boot straps:)  and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

[Guest guest]

Ok great. thanks Marla. I will try what you suggested.

To: Neurosarcoidosis Sent: Thu, February 3, 2011 8:21:26 PMSubject: Re: life can really suck

I am Thank you, I will get the Remicade tomorrow, so just 24 hrs. I think you can go online to the company that makes Remicade and fill out an assistance application, you may be able to get it free from the company. Same with Anti-depressants most companies will help you if you need it. I applied but my husband makes too much, so we get caught in the middle, we have an HSA with our Insurance, we pay the first $6000, then they pay 100%, so just charged $4000 yesterday toward our deductible for one dose of Remicade, it's crazy. But give it a try. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Hang in there Marla. Know that you are not alonein this fight. I went to the Neurologist yesterday and there is still a lot of inflammation in my eyes and brain. So now my prednisone has ben moved back to 60 mg (was down to 20 mg). I am not liking this because I have already gained 40 pounds after being on the steroids now for six months. The doctors want to give me remicade but I do not have insurance and cannot afford to get the medication. On top of all of that I have been really depressed. Cannot afford to get medication for depression either. I am just so disgusted and frustrated!!!! I want my life back and I am tired of always feeling like crap and being sick. So back to the 60 mg of steroids and more weight gain. I look and feel like a big cow because of the weight.

To: NS <neurosarcoidosis >Sent: Wed, February 2, 2011 7:10:48 PM Subject: life can really suck

After fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called

every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed. now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so. Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact, he has now picked her up and taking her out to dinner to pick her brain. He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings. It's cold here, as everywhere I know, actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain

is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry. Need to pull up my boot straps:) and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Guest guest]

La, the Remicade is terribly expensive, plus the cost of administering it, but we have had at least one group member who got the drug supplied for free by the manufacturer, altho this was a few years ago. I think she still had to pay for the infusion costs, facility fee, etc. You might qualify for some kind of assistance; you would have to contact the manufacturer. I tried the website but got diverted to another organization. However, you could probably get an antidepressant free or cheap. Have you talked to your doctor about your depression & lack of insurance? Many times the docs have samples. There are also inexpensive antidepressants. Another option is NeedyMeds.org. This is Connie's info on it:

If you don't have insurance (Lyrica is expensive) you can get it free or for only a couple of dollars for a three month supply at NeedyMeds.org. This is a site run by the pharmaceutical companies, there is no obligation and you don't have to join anything. You find your medicine, brand name or generic, (Lyrica is a brand name), pull the the (1) page application fill out your name and address on the top, take the rest to your doctor; he fills it out attachs your prescription and sends it in. Next thing you know...medicine. The most I have ever seen a prescription cost is $6.50 for a three month supply. I have known of them filling a migraine prescription for injectable Immitrex for a client ($300.00 prescription) and supply the syringes and alcohol preps for $0.00. My niece has no ins and horrible asthma, they supply all her very expensive asthma medicine free. (I found out about this site when I worked for Vocational Rehabilitation in 2004 for a little while (hated it) and came upon this site. It helped alot of our clients, to this day I send out a letter to my claimants applying for disability, when I read in their medical records or they tell me that they can not afford a medicine because of lack of insurance, with the information.

Ramblin' RoseModerator COLTS STILL ROCK!

To: Neurosarcoidosis From: ladyt19119@...Date: Thu, 3 Feb 2011 13:51:32 -0800Subject: Re: life can really suck

Hang in there Marla. Know that you are not alonein this fight. I went to the Neurologist yesterday and there is still a lot of inflammation in my eyes and brain. So now my prednisone has ben moved back to 60 mg (was down to 20 mg). I am not liking this because I have already gained 40 pounds after being on the steroids now for six months. The doctors want to give me remicade but I do not have insurance and cannot afford to get the medication. On top of all of that I have been really depressed. Cannot afford to get medication for depression either. I am just so disgusted and frustrated!!!! I want my life back and I am tired of always feeling like crap and being sick. So back to the 60 mg of steroids and more weight gain. I look and feel like a big cow because of the weight.

To: NS <neurosarcoidosis >Sent: Wed, February 2, 2011 7:10:48 PMSubject: life can really suck

After fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed. now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so. Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact, he has now picked her up and taking her out to dinner to pick her brain. He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings. It's cold here, as everywhere I know, actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry. Need to pull up my boot straps:) and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Guest guest]

Thanks Connie, good to hear from you, I think things are better now for awhile anyway, I received my Remicade on Friday, can't say I'm feeling that much better yet, but will in the next few days.  The Teen drama is quiet now, cross my fingers it stays that way.

Being so far away from my cousins with all that's going on in there lives right now is hard, but I have 3 brothers that live there and they are reaching out to help, and keeping me posted. were not in the super storm area, in fact we have no snow, but last weeks highs didn't read

a double digit until Friday and it's heading back down again. OH well. Glad to hear your still kicking keep it up and hope you get some relief in life. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I'm sorry your having such a bad spell Marla.  Emotional pain is way worse than physical pain, but I'll be praying that both of it let's up.  I can not imagine how much worse the cold must be making it feel, and then having to stay inside not to make it worse.  I may not can go out in the sun, but it sure makes me feel bette to see it.  Are you under the super storm, I hope not.   I'm sorry I haven't been around much lately, I'll try to do better.  Connie (believe it or not I'm still kicking)

To: neurosarcoidosis

Sent: Wed, February 2, 2011 6:28:36 PMSubject: RE: life can really suck [1 Attachment] 

Marla, these are the times that you need the BSF (Bootstrap Fairies).  When you don't have the energy or will to pull up those bootstraps & keep on, call on the Fairies!  Remember that I am, myself, a certified BSF.  So you just give that child a hug when she comes home, get some rest, and by tomorrow, some fairy dust will have dissolved some of the tension.

Ramblin' RoseModerator

 COLTS STILL ROCK!   

 

To: neurosarcoidosis From: mebramer@...Date: Wed, 2 Feb 2011 17:10:48 -0700

Subject: life can really suckAfter fighting with the pharmacy's incompetent people for over a week, I did NOT get my Remicade today, I called every day for a week, sometimes 2-3 times a day, and everyone had a different answer for why it couldn't be processed.

now I am rescheduled for Friday, and I just pray that they can get it there, finally this am, I  talked to someone who was able to take care of everything and said it would be delivered tomorrow, I sure hope so.

Then today after having a talk with my daughter about some things happening here, she left, out the door, light jacket and 7 degrees. after a couple hours of you know what, my son whom I had been in contact with and is the closest brother, was able to make contact,

he has now picked her up and taking her out to dinner

to pick her brain.  He is such a good boy, he has to deal with the Bi Polar, so he is very sensitive to feelings.  It's cold here, as everywhere I know, actually I'm too numb to be in pain from the cold, feel like I weigh 1000 lbs, why is that emotional pain is so much draining, between my daughter and not getting Remicade, although that was probably why I wasn't in the mood to have my 15 yo daughter test me today. 

I keep trying to check in, and help, but feel I've been a bigger burden, I'm sorry.  Need to pull up my boot straps:)  and move on. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)