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reneeberry

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I'm sorry I know I have posted quite a few times on here and thanks to everyone who replied. Last night was horrible, I got maybe two hours sleep as my twitching was relentless and starting having these sharp pains in my right arm and calf. It didn't help that when my husband asked me why I couldn't sleep last night and I told him it started a huge fight b/c he thinks that all of this stuff is in my head and there is absolutely nothing wrong with me. He asked me if life with him was so bad that I wanted to be sick...how am I supposed to answer that beacuse of course thats not true, it's actually the complete opposite, I don't want to be sick, I want to grow old with him and with everything that's happening to my body lately I fear I won't be able to. I have great respect for everyone on here and wish that absolutely nobody had to go through what you are. THanks again for taking the time to listen...well read...and God bless.
 

joelc

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I am so sorry your husband is dealing with it this way - he really needs to support you instead of persuing his present course of denial. I know it is hard, but give him time to adjust. It is a hard thing, and frightening, to watch a loved one start to experience some difficulty. He likely wanted to grow old with you as well and needs time to adjust - I just pray he does! This is a time when he needs to be there for you and support you!

Have you tried taking Ibuprophen for the pain - it seems to be the only thing that helps me with this.

Hang in there - I pray you will soon have his support
God Bless
 

Jamiet

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renee,

I've been thru this (to some extent).....your hubby doesn't understand, trust me. They are used to getting a virus, cold, flu, etc.....it all goes away in about a week. They jsut dont know, hence, they don't know how to handle it.

I would say you need to get someone to speak to you and him, maybe a psych or a counsel, he may be a little resentful.

I've been thru the dr's thinking i'm nuts, family and friends quit calling..its hard.


you will find solice here, come back, ask all you want...we're here for you and we understand exactly what you are going thru..

rgds,

jamie
 

Meg1

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This is a perfect example of the recent problems with this forum. Jamie and Joel, renee doesn't have ALS--she's 24 and her doc has told her that her failure to take her thyroid meds for 9 months is likely her problem. And she, young and relatively healthy, is hanging out in an ALS forum actually asking for, and getting!, sympathy from dying people.

Sorry--boils my blood.
 

reneeberry

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Excuse you Meg, you have no right to be rude like that. I understand that everyone here is really sick and I believe I even stated that. I have had thyroid problems for 14 years and never have I felt like this before. I'm sorry if I have offended you for coming to this site, trust me even if I am diagnosed I won't be back.
 

joelc

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Meg, I am sorry you feel this way! I realize she likely does not have ALS, but she is also a scared and hurting human being and can benefit from some compassion from us.

I understand your point as well, but still feel we can provide support and try to help. What's the harm?

Now she is not planning on coming back, I hope she can find support and comfort somewhere else.
 

liz

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Joel -

I personally did not join this forum to provide support to people who do not have a motor neuron disease and diagnostically aren't even in the ballpark (unless they are a CALS, of course). What bothers me a lot more than Renee leaving is hearing from people like Pat that they haven't been coming as often because these folks have been monopolizing the forum. :(

Liz
 

reneeberry

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I sincerely apologize to everyone here, I did not mean to monopolize the forum and I am truly sorry that anybody has to experience ALS. Again I really am sorry, I didn't mean to offend anybody and I will keep you all in my prayers. Thank you to those with kind words and God Bless.
 

joelc

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OK - you have all made your point.

I just looked at the purpose statement at the top of the page and it does state - for individuals affected by ALS - so maybe its okay to kick anyone off who does not have ALS. My mistake.
 

shannonme

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Meg's point

I understand Meg's comments. Good gosh-- this is a terrible disease. I'm not suffering with ALS; I am caring for my mother. Just 8 months ago my cute mom was driving around town in her zippy red car. She was an elementary school secretary, and a fun grandma. When I first came to this forum she had a limp and and was unsteady on her feet. Now she can barely eat with her gnarled hands and she's confined to a wheelchair for most of the day. Her speech is getting harder to understand. It's heartbreaking to see her suffer and shocking to see how fast this disease is taking her. Mom prefers to avoid forums or suport groups. Like Omar stated, she doesn't need a reminder of her disease. She wants to distract herself from the reality of her life. That's how she copes.

Others feel better by helping- through fund raising activities, or even sending reassuring emails to people questioning their own health. This forum has helped and comforted so many people...people diagnosed with ALS, caretakers and family members(me), and people wondering about their own strange illnesses. It's a wonderful, visible resource open to anyone with a computer and internet capabilities. You're going to get your share of different people from all walks of life. You're not going to agree with everybody. The open environment that it is will expose us to some wonderful, helpful people and even the occasional mentally ill person. But that's life, isn't it? My church like most, is open to all. I remember a Sunday when a young woman walked in and asked to speak to our congregation. She proceeded to tell us how she grew up in the neighborhood... and now she's writing the third bible to follow up the New Testament. After sharing some of her "insights" she blew us a kiss and left the church. I still go to church.

This website was cleverly designed with an area for General ALS Discussion-- perfect for people asking questions about the disease, trying to get a diagnosis. And perfect for people that want to answer them. Going back to how we all cope differently with a terminal illness, some find it comforting to help others. There's an area for PALS, and one for Caregivers. This enables folks to spend time where they feel most comfortable. Of course, it's an imperfect world and as such you have to expect imperfection at times. But I like this little helpful family. Meg reminds us, in her not so subtle way, to "quit whining and live". Maybe that's just the kind of help some people need. A terminal illness will change your outlook on life to be sure. My mom and I have had some great discussions. Dying will get you to thinking-- I know that I'll try never to take anything for granted. Life is precious and many of you have help me believe that.

Peace...

Shannon
 

Al

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Joined
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On
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We try not to kick anyone off here. I realise some of you are not happy but I have been having a hard time keeping up with all the posts the last week or so. I'm trying to get caught up so until I sort thngs out and decide what to do would everyone try to stay calm. Don't do anything rash. And don't for God's sake post tonight that you have a rash. Rashes are not an ALS symptom. Take care.
AL.
 

Jamiet

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Well said Shannon...

ALS and it's relatives are horrible.

Life is hard enough dealing with that.

rgds,

Jamie
 
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