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Posted 6/8/2007 3:28 AM (GMT 0)
  hi everyone!!  I have been reading all the posts and remembering all the frustrations of being sick at first and trying so hard to find the answers.My heart goes out to all of you who are experiencing that right now.I have been diagnosed since 2000.I remember the relief of finding out the truth and the terror of knowing it.Since that time , I have become emotionally stronger and physically weaker. I no longer work, and I still have two small children at home to raise.I deal with this beastly disease with the best sense of humor i can muster. I have been on betaseron for several years and have recently started rebif. The hardest thing for me is having to accept each little loss, and know that it won't return.
Posted 6/8/2007 3:49 AM (GMT 0)
I understand your feelings of loss. I was diagnosed a couple of days before Christmas 2006. I'm on rebif. I hate taking the shots. I think we experience all the stages of grief. I'm facing my own diminishment and mourning the loss of choices and abilties. This disease teaches you to make conscious choices about where to put your time and energy and effort. I am grateful that my son is almost 20. I can't imagine experiencing the MS fatigue with toddlers. My heart goes out to you and I admire you.
Posted 6/8/2007 1:44 PM (GMT 0)
thank you so much for the reply. It is hard to give them what I can when the energy isn't there. My oldest daughter helps with them, and does a lot with them , so they don't miss out on too much. I am so grateful to her!! Her understanding is worth everything. I wish everyone understood .
Posted 6/8/2007 6:21 PM (GMT 0)
Hey Marmie

My goodness...a new hero for us! Welcome to the board!! I"m so sorry to hear of u'r dx, but am glad to know u'r coping and have u'r daughter to help. I'm not dx'd with anything, but have experienced many symptoms including the horrible fatigue. I too can't imagine toddlers with that...even teens. No matter the age, they always need more attention than MS fatigue allows u to give. I'm so glad u'r here with us and hope u'll find these wonderful people as helpful and supportive as i have. U couldn't have come to a better place!

We have live chats on Mondays at 6:00pm each week. It's a great chance to get some real time answers to u'r questions or just get to know everyone a little better. We have a great time and i'd love to see u join us. Again, welcome to the board!
Posted 6/8/2007 9:00 PM (GMT 0)
Hi Marmie,

 

   You sound like you have a wonderful family.  It amazes me how adaptive and special children can be.  Please make yourself at home here, we have a really great group of people :-)

Posted 6/8/2007 9:47 PM (GMT 0)

 

Hi Marnie,

Welcome aboard. Glad you have a helping hand. It makes a big difference! My 4 children are all grown now...the youngest being 22. I am glad they are making a life for themselves and having an ill mother made them stronger and more empathetic. I cherish everything we did together before I got sick and even now try to still be there for them emotionally as they are there for me. It a difficult balancing act not to overwhelm them and at the same time teach them life is not perfect and not meant only for perfect people. And not to mention trying to be positive at the same time when you are so fatigued that it is difficult to do anything. Hope you are doing well. Let us know how you are.   Dale

Posted 6/13/2007 3:35 PM (GMT 0)
Thank you all for being so kind and welcoming me! The live chat on monday night sounds wonderful. I have 5 children, 3 are adults. They are great kids and have helped me through a lot. At times, in the beginning, I was not sure who the strongest was, my children, or myself.My oldest, mike, came home from california to help me when I was first diagnosed He stayed two years and taught me how to laugh at it all.My family loves laughter, and that is how I deal with my disease.My children have been a blessing to me. I give them all i have, and some days I fight for every bit of energy I can get. It is always worth the fight. Thank you all for the warm welcome!!
Posted 6/13/2007 3:56 PM (GMT 0)
Hi Marmie -

Since I'm in limboland and lupus was thrown at me at the last neuro visit, I've been checking out their forum. I found this on one of their posts and I think MS patients can relate to this theory. It's directed towards Lupus, however it definately 'fits' for MS as well. Maybe you have heard of it, but I'm posting for those who haven't. It's called the spoon theory.

www.butyoudontlooksick.com/the_spoon_theory  (I just added the true link)

If it doesn't go right to the spoon theory, click on the side panel where it state spoon theory.
Posted 6/14/2007 3:05 PM (GMT 0)
thank you denda!! I will check that out.
Posted 6/15/2007 10:21 PM (GMT 0)

Its great to welcome another veteran of this disease to the forum.

And your words ring so true for all of us.

Your insight will help us as much as we hope we can help you, with our support and love.

Great to have you with us.

Dog yeah

Posted 6/26/2007 1:55 AM (GMT 0)
thanks snowdog. I appreciate the welcome. It is great to have a place where I am understood. I am so glad to be here.
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