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Replies to '05/30 Ask the Authors'

 
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May 30, 2007, 2:49 pm PDT

living with ms

Quote From: beckycaddell

I was diagnosed with MS in November 2005. I know what kind of a toll it takes on not only the person living with it, but also the entire family. I really sympethize with the guest and her husband and know what they are going thru. My husband and mom told me when i first started looking in to the possibility of it that I was borrowing trouble. After I was diagnosed, my mom was all about reading up on and researching this disease so she could try to understand what was happening to me and how she could best support me. My husband thought and still does, that there is a magic pill out there they just aren't giving me because I don't have insurance. If i try to tell him what is going on with me his response is usually "Well I am tired too" or "yeah well i am in pain every day but you don't hear me complaining". A few months ago I came across a post called Understanding What Having MS Means. It was a big attention getter. I also sent it to friends and family. Most of the replies i received were "thank you for sharing this with me", or "I really didn't know MS could be that bad because you don't look sick."

 There are so many resources out there for people with MS and the spouse and kids who have to live with it. I have received help for utilities and rent from the local coalition and the MS Society. A Lot of the drugs needed for symptoms can be received free of charge or low cost thru the drug companies. My best advice is research all you can. Find out what is available from coping to medication. I also visit many online MS chat rooms and have made many new wonderful friends. It makes a person who rarely goes out in public seem much less secluded and alone.

 I would be happy to post "Understanding What Having MS Means" for anyone interested. The way it is worded helps people not living with MS understand a little more what it can do and just because you are "sick" doesn't mean that you don't want your friends to come visit you or that you don't want to hang out or do things with them, it just means that sometimes you may have to cancel things last minute or when you are tired it means you are tired now, not wait 15 minutes see how you feel then. It is very powerful and encouraging.

 

Thanks,

Becky

 Please post "Understanding What Having MS Means", I would love to have it to help others understand my life.  I was diagnosed with ms in 1986.  I retired on social security disability three years ago. 
Thank you,
Lynn
 
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May 30, 2007, 3:08 pm PDT

LIVING with ms

Quote From: beckycaddell

I was diagnosed with MS in November 2005. I know what kind of a toll it takes on not only the person living with it, but also the entire family. I really sympethize with the guest and her husband and know what they are going thru. My husband and mom told me when i first started looking in to the possibility of it that I was borrowing trouble. After I was diagnosed, my mom was all about reading up on and researching this disease so she could try to understand what was happening to me and how she could best support me. My husband thought and still does, that there is a magic pill out there they just aren't giving me because I don't have insurance. If i try to tell him what is going on with me his response is usually "Well I am tired too" or "yeah well i am in pain every day but you don't hear me complaining". A few months ago I came across a post called Understanding What Having MS Means. It was a big attention getter. I also sent it to friends and family. Most of the replies i received were "thank you for sharing this with me", or "I really didn't know MS could be that bad because you don't look sick."

 There are so many resources out there for people with MS and the spouse and kids who have to live with it. I have received help for utilities and rent from the local coalition and the MS Society. A Lot of the drugs needed for symptoms can be received free of charge or low cost thru the drug companies. My best advice is research all you can. Find out what is available from coping to medication. I also visit many online MS chat rooms and have made many new wonderful friends. It makes a person who rarely goes out in public seem much less secluded and alone.

 I would be happy to post "Understanding What Having MS Means" for anyone interested. The way it is worded helps people not living with MS understand a little more what it can do and just because you are "sick" doesn't mean that you don't want your friends to come visit you or that you don't want to hang out or do things with them, it just means that sometimes you may have to cancel things last minute or when you are tired it means you are tired now, not wait 15 minutes see how you feel then. It is very powerful and encouraging.

 

Thanks,

Becky

 Becky,
I would love a copy of "Understanding What Having MS Means".  I was diagnosed in February of 2004.  After accepting it myself, although I think that is an on going process, the most frustrating part of it all is the constant need to explain things.  My husband and two boys are awesome but they also seem  to forget that this isn't going away like a cold or the flu.  Something that has helped me is a quote that I read every morning.
   "I can be changed by what happens to me.  I refuse to be reduced by it."  Maya Angelou
Thanks sister,
Shelly
slandrasik@yahoo.com


 
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May 30, 2007, 4:16 pm PDT

Been there, done that.......

Quote From: beckycaddell

I was diagnosed with MS in November 2005. I know what kind of a toll it takes on not only the person living with it, but also the entire family. I really sympethize with the guest and her husband and know what they are going thru. My husband and mom told me when i first started looking in to the possibility of it that I was borrowing trouble. After I was diagnosed, my mom was all about reading up on and researching this disease so she could try to understand what was happening to me and how she could best support me. My husband thought and still does, that there is a magic pill out there they just aren't giving me because I don't have insurance. If i try to tell him what is going on with me his response is usually "Well I am tired too" or "yeah well i am in pain every day but you don't hear me complaining". A few months ago I came across a post called Understanding What Having MS Means. It was a big attention getter. I also sent it to friends and family. Most of the replies i received were "thank you for sharing this with me", or "I really didn't know MS could be that bad because you don't look sick."

 There are so many resources out there for people with MS and the spouse and kids who have to live with it. I have received help for utilities and rent from the local coalition and the MS Society. A Lot of the drugs needed for symptoms can be received free of charge or low cost thru the drug companies. My best advice is research all you can. Find out what is available from coping to medication. I also visit many online MS chat rooms and have made many new wonderful friends. It makes a person who rarely goes out in public seem much less secluded and alone.

 I would be happy to post "Understanding What Having MS Means" for anyone interested. The way it is worded helps people not living with MS understand a little more what it can do and just because you are "sick" doesn't mean that you don't want your friends to come visit you or that you don't want to hang out or do things with them, it just means that sometimes you may have to cancel things last minute or when you are tired it means you are tired now, not wait 15 minutes see how you feel then. It is very powerful and encouraging.

 

Thanks,

Becky

I was diagnosed with MS in April 1994. My husband then said "don't worry, I'm here"  Well....I reminded him of this when he wanted a divorce, and he didn't have anything to say.  Oh well, I am still learning how to balance a part-time job with life, so I won't just sleep through it!  Life goes on.

Thanks!

Karen

 

 
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May 30, 2007, 4:50 pm PDT

05/30 Ask the Authors

Quote From: beckycaddell

I was diagnosed with MS in November 2005. I know what kind of a toll it takes on not only the person living with it, but also the entire family. I really sympethize with the guest and her husband and know what they are going thru. My husband and mom told me when i first started looking in to the possibility of it that I was borrowing trouble. After I was diagnosed, my mom was all about reading up on and researching this disease so she could try to understand what was happening to me and how she could best support me. My husband thought and still does, that there is a magic pill out there they just aren't giving me because I don't have insurance. If i try to tell him what is going on with me his response is usually "Well I am tired too" or "yeah well i am in pain every day but you don't hear me complaining". A few months ago I came across a post called Understanding What Having MS Means. It was a big attention getter. I also sent it to friends and family. Most of the replies i received were "thank you for sharing this with me", or "I really didn't know MS could be that bad because you don't look sick."

 There are so many resources out there for people with MS and the spouse and kids who have to live with it. I have received help for utilities and rent from the local coalition and the MS Society. A Lot of the drugs needed for symptoms can be received free of charge or low cost thru the drug companies. My best advice is research all you can. Find out what is available from coping to medication. I also visit many online MS chat rooms and have made many new wonderful friends. It makes a person who rarely goes out in public seem much less secluded and alone.

 I would be happy to post "Understanding What Having MS Means" for anyone interested. The way it is worded helps people not living with MS understand a little more what it can do and just because you are "sick" doesn't mean that you don't want your friends to come visit you or that you don't want to hang out or do things with them, it just means that sometimes you may have to cancel things last minute or when you are tired it means you are tired now, not wait 15 minutes see how you feel then. It is very powerful and encouraging.

 

Thanks,

Becky

Hi Becky,

 

I would be very interested in "Understanding What Having MS Means".  I am a 40 year old woman (just), and was diagnosed with MS in February 2007.  I struggled with the diagnosis for the first couple of months, but have come to realize that it is my life, and I can not let it control me.  Still however have the odd day where it almost takes my breath away with the thought of the unknown.  I am also finding it very hard to explain to everyone in my life how tired I am some days, before I even get out of bed in the morning.  As well how strange my entire body can feel some days.  But I will keep on fighting.

 

Thanks for any info you could share

Wanda

 
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May 30, 2007, 8:27 pm PDT

I have MS too!!

Quote From: beckycaddell

I was diagnosed with MS in November 2005. I know what kind of a toll it takes on not only the person living with it, but also the entire family. I really sympethize with the guest and her husband and know what they are going thru. My husband and mom told me when i first started looking in to the possibility of it that I was borrowing trouble. After I was diagnosed, my mom was all about reading up on and researching this disease so she could try to understand what was happening to me and how she could best support me. My husband thought and still does, that there is a magic pill out there they just aren't giving me because I don't have insurance. If i try to tell him what is going on with me his response is usually "Well I am tired too" or "yeah well i am in pain every day but you don't hear me complaining". A few months ago I came across a post called Understanding What Having MS Means. It was a big attention getter. I also sent it to friends and family. Most of the replies i received were "thank you for sharing this with me", or "I really didn't know MS could be that bad because you don't look sick."

 There are so many resources out there for people with MS and the spouse and kids who have to live with it. I have received help for utilities and rent from the local coalition and the MS Society. A Lot of the drugs needed for symptoms can be received free of charge or low cost thru the drug companies. My best advice is research all you can. Find out what is available from coping to medication. I also visit many online MS chat rooms and have made many new wonderful friends. It makes a person who rarely goes out in public seem much less secluded and alone.

 I would be happy to post "Understanding What Having MS Means" for anyone interested. The way it is worded helps people not living with MS understand a little more what it can do and just because you are "sick" doesn't mean that you don't want your friends to come visit you or that you don't want to hang out or do things with them, it just means that sometimes you may have to cancel things last minute or when you are tired it means you are tired now, not wait 15 minutes see how you feel then. It is very powerful and encouraging.

 

Thanks,

Becky

I was diag. with Multiple Sclerosis about 2 1/2 years ago. I'm finally getting adjusted to having this disease and not ashamed of it anymore. At first I was scared to death about the thought of having to give myself injections at all much less 3 times a week. I'm still having good days and bad days. I have a husband and 2 children. My son has always coped with the shots and such better than my daughter.  I know my husband deals with it better now than in the beginning. I finally learned to set my limits to the sun, heat, excessive,etc. Please send me a copy or telling me how to get a copy of Understanding What Having MS Means. I am always in the mood for encouraging  good news about this disease and more ways to cope with it on a daily basis.

 

Thanks a ton!!!

Kellys wife1

 

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May 31, 2007, 12:08 am PDT

Ask the Authors

Quote From: beckycaddell

I was diagnosed with MS in November 2005. I know what kind of a toll it takes on not only the person living with it, but also the entire family. I really sympethize with the guest and her husband and know what they are going thru. My husband and mom told me when i first started looking in to the possibility of it that I was borrowing trouble. After I was diagnosed, my mom was all about reading up on and researching this disease so she could try to understand what was happening to me and how she could best support me. My husband thought and still does, that there is a magic pill out there they just aren't giving me because I don't have insurance. If i try to tell him what is going on with me his response is usually 'Well I am tired too' or 'yeah well i am in pain every day but you don't hear me complaining'. A few months ago I came across a post called Understanding What Having MS Means. It was a big attention getter. I also sent it to friends and family. Most of the replies i received were 'thank you for sharing this with me', or 'I really didn't know MS could be that bad because you don't look sick.'

There are so many resources out there for people with MS and the spouse and kids who have to live with it. I have received help for utilities and rent from the local coalition and the MS Society. A Lot of the drugs needed for symptoms can be received free of charge or low cost thru the drug companies. My best advice is research all you can. Find out what is available from coping to medication. I also visit many online MS chat rooms and have made many new wonderful friends. It makes a person who rarely goes out in public seem much less secluded and alone.

I would be happy to post 'Understanding What Having MS Means' for anyone interested. The way it is worded helps people not living with MS understand a little more what it can do and just because you are 'sick' doesn't mean that you don't want your friends to come visit you or that you don't want to hang out or do things with them, it just means that sometimes you may have to cancel things last minute or when you are tired it means you are tired now, not wait 15 minutes see how you feel then. It is very powerful and encouraging.

Thanks,

Becky

Hello Becky,

I would like to read 'Understanding What Having MS Means'. my email address is gum_ba@hotmail.com.  I was diagnosd with MS in 2000 and I know how the guest on the show felt, in that my husband is still having a hard time dealing with it.  We've had some medical insurance problems and I haven't been able to take my Avonex in about a month and it's starting to worry him. He thinks that I will become worse. I tell him all the time to have a positve outook because I need that. When he's upset and worried, I'm upset and worried and that just exaserbates my symptoms. The less stressed I am right now with out taking the meds the better.  I am the kind of person that I'll worry about how you're feeling before I worry about myself and he doesn't understand that either. I could use some help around the house because I cant clean like was able to before, and I don't drive as often. I am back in school trying to obtain my masters' degree online, but I often feel guilty about that because here I spend money on medicine, but then I'm spending even more money on my education and I still have 2 sons to put through college. The guilt is enormous. but if  you would please post that or email it I would greatly appreciate it.

 

Thank You sincerely

Dawn from Oakland, CA

 
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June 1, 2007, 12:20 pm PDT

Flying Free

Quote From: beckycaddell

I was diagnosed with MS in November 2005. I know what kind of a toll it takes on not only the person living with it, but also the entire family. I really sympethize with the guest and her husband and know what they are going thru. My husband and mom told me when i first started looking in to the possibility of it that I was borrowing trouble. After I was diagnosed, my mom was all about reading up on and researching this disease so she could try to understand what was happening to me and how she could best support me. My husband thought and still does, that there is a magic pill out there they just aren't giving me because I don't have insurance. If i try to tell him what is going on with me his response is usually "Well I am tired too" or "yeah well i am in pain every day but you don't hear me complaining". A few months ago I came across a post called Understanding What Having MS Means. It was a big attention getter. I also sent it to friends and family. Most of the replies i received were "thank you for sharing this with me", or "I really didn't know MS could be that bad because you don't look sick."

 There are so many resources out there for people with MS and the spouse and kids who have to live with it. I have received help for utilities and rent from the local coalition and the MS Society. A Lot of the drugs needed for symptoms can be received free of charge or low cost thru the drug companies. My best advice is research all you can. Find out what is available from coping to medication. I also visit many online MS chat rooms and have made many new wonderful friends. It makes a person who rarely goes out in public seem much less secluded and alone.

 I would be happy to post "Understanding What Having MS Means" for anyone interested. The way it is worded helps people not living with MS understand a little more what it can do and just because you are "sick" doesn't mean that you don't want your friends to come visit you or that you don't want to hang out or do things with them, it just means that sometimes you may have to cancel things last minute or when you are tired it means you are tired now, not wait 15 minutes see how you feel then. It is very powerful and encouraging.

 

Thanks,

Becky

I too was touched by the way Dr. Phil explained MS and this show will help many husbands, wifes and family members understand. I learned the unexplained health issues I was dealing with and had been for 20 years were MS two years ago, 2005. My marriage needed last fall and my ability to work has changed. I love life and want a life with my friends and family sharing the good and bad. You are right lots of information is availably for anyone who wants to understand MS. Explaining how MS effects your body and how you feel is not very easy. I'd would appriecate it if you would send me the post 'Understanding What Having MS Means".

Thanks,
Star
 


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