Getting Attention

[Guest guest]

Ruth, A nurse at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all

night and exhausted all day the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this. Eileen

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

[Guest guest]

Eileen, I think as nurses we have a lot of difficulty recognizing or accepting illness. In 1994 I developed a cardiac arrhythmia (atrial fibrillation) during the night & waited about 3 hours to go to the hospital, even though my pulse was so fast & erratic that I couldn't count it, even at the carotid. Then when we got to the E.R., I had my husband stop so I could check my pulse again. If it was better, I was going to go back home! When I walked in, I was just sure they were going to check me & say, go home, there's nothing wrong with you. Instead, they whipped me into a room, hooking up equipment so fast it made my head spin. Turned out my heart rate was over 200. It took several hours to convert it. When I told one of the doctors that I really hesitated to come in, he rolled his eyes & said that nurses were the worst at delaying care.

This is how I was diagnosed with sarc; the chest xray they took for the arrhythmia showed enlarged hilar nodes & I had a positive biopsy. But no symptoms for 5 years.

Once again, I have earned the nickname,

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Getting AttentionDate: Mon, 29 May 2006 11:15:21 -0700 (PDT)

Ruth,

A nurse at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all night and exhausted all day the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this.

Eileen

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen, I think as nurses we have a lot of difficulty recognizing or accepting illness. In 1994 I developed a cardiac arrhythmia (atrial fibrillation) during the night & waited about 3 hours to go to the hospital, even though my pulse was so fast & erratic that I couldn't count it, even at the carotid. Then when we got to the E.R., I had my husband stop so I could check my pulse again. If it was better, I was going to go back home! When I walked in, I was just sure they were going to check me & say, go home, there's nothing wrong with you. Instead, they whipped me into a room, hooking up equipment so fast it made my head spin. Turned out my heart rate was over 200. It took several hours to convert it. When I told one of the doctors that I really hesitated to come in, he rolled his eyes & said that nurses were the worst at delaying care.

This is how I was diagnosed with sarc; the chest xray they took for the arrhythmia showed enlarged hilar nodes & I had a positive biopsy. But no symptoms for 5 years.

Once again, I have earned the nickname,

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Getting AttentionDate: Mon, 29 May 2006 11:15:21 -0700 (PDT)

Ruth,

A nurse at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all night and exhausted all day the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this.

Eileen

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen, I think as nurses we have a lot of difficulty recognizing or accepting illness. In 1994 I developed a cardiac arrhythmia (atrial fibrillation) during the night & waited about 3 hours to go to the hospital, even though my pulse was so fast & erratic that I couldn't count it, even at the carotid. Then when we got to the E.R., I had my husband stop so I could check my pulse again. If it was better, I was going to go back home! When I walked in, I was just sure they were going to check me & say, go home, there's nothing wrong with you. Instead, they whipped me into a room, hooking up equipment so fast it made my head spin. Turned out my heart rate was over 200. It took several hours to convert it. When I told one of the doctors that I really hesitated to come in, he rolled his eyes & said that nurses were the worst at delaying care.

This is how I was diagnosed with sarc; the chest xray they took for the arrhythmia showed enlarged hilar nodes & I had a positive biopsy. But no symptoms for 5 years.

Once again, I have earned the nickname,

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Getting AttentionDate: Mon, 29 May 2006 11:15:21 -0700 (PDT)

Ruth,

A nurse at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all night and exhausted all day the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this.

Eileen

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Eileen, I too h ave read many articles in our local paper about ppl that are dealing with diseases, and they actually sound off better than us! I was told to call the paper to do an article on myself. I have just brushed it off, but then again, it may hael a lot of us out there. I have also recently received a service dog, to help me when I have dizzy spells, and to help retreive the phone and to help steady me to stand up. Everyone has accepted my dog, but I am sure an article would help. I would just feel bad, b/c I know that there are ppl out there that are worse off than me. Keep the Faith. LynneEileen Mac wrote: Ruth, A nurse

at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all night and exhausted all day

the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this. Eileen Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

To My New Family

Love Lynne

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Lynne, I think an article is a good idea. For one thing, the service dog is a good angle. I think most people still think they are only for the blind. What's your dog's name? Did you have any other dogs for your dog to adjust to? Inquiring minds want to know!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Getting AttentionDate: Tue, 30 May 2006 03:34:26 -0700 (PDT)

Eileen,

I too h ave read many articles in our local paper about ppl that are dealing with diseases, and they actually sound off better than us! I was told to call the paper to do an article on myself. I have just brushed it off, but then again, it may hael a lot of us out there. I have also recently received a service dog, to help me when I have dizzy spells, and to help retreive the phone and to help steady me to stand up. Everyone has accepted my dog, but I am sure an article would help. I would just feel bad, b/c I know that there are ppl out there that are worse off than me. Keep the Faith.

LynneEileen Mac wrote:

Ruth,

A nurse at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all night and exhausted all day the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this.

Eileen

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

To My New Family

Love Lynne

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database