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PRAYERS FOR MIKE SAID.................

Surgery Up date

Just popped in home to get clothes Mike is on life support they are to vent him tomorrow morning ..If he makes it through the night and is not to weak .. . His lungs gave out he is so brave ... but so ill , infection will undoubtedly clame him ... The arm is beautiful but definitely not worth it ... please keep him in your prayers .. Lois

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  • 1 month later...

Lois,

I am thinking of you and how you must be hurting. I know that you miss Mike tremendously, but are glad that he is not suffering. These mixed emotions, the loss, the sorrow, the fight that finally ended. Yet, here you are Lois, thinking of all of us. You are such a good person. Perhaps you can use your energies to figure a way to get us some attention. NF needs a good PR firm, a celebrity or many of them, and some super fundraiser that puts us on the news. What can this be? I pray all the time for the divine intelligence to come up with this and quickly. You are 100% right, NFers suffer too much. Please know that I am thinking of you and missing Mike too, for that matter. I have been so sad since he and Johanna passed so close to each other in time. I felt a bond to both of them. Love and hugs to you. Vicki

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Hi Vicki,

Yes I am hurting Dear But you are right at least I know My precious son is not hurting now like your precious Anne ..

Vicki I would take on the roll of fundraising and especially finding a spokes person for NF If I thought I could do it ... I'm afraid since Mike is gone I don't do much but feel guilty and cry and wish I could be with him ... Life seems so empty.

You are 100% right we do need to form a group and start the ball rooling get a VIP person and start pushing for awareness because the Mikes and the Anne's and the Johannas of this world will just continue on till we do because its only some one else till it happens to us PERSONALLY ... yes we feel badly but for others, But when it hits home well Vicki you know dear ... So If there is a leader I'll join in but I'm afraid I'm not leadership material...I'd do most anything to help NF#2 and NF#1 its all the same to me its a horrible disease that takes lives and leaves parents guilty and hurting ... and little beauties like Anne confused and scared ..... big hugs Lois

Re: Re: Lois

Lois,I am thinking of you and how you must be hurting. I know that you miss Mike tremendously, but are glad that he is not suffering. These mixed emotions, the loss, the sorrow, the fight that finally ended. Yet, here you are Lois, thinking of all of us. You are such a good person. Perhaps you can use your energies to figure a way to get us some attention. NF needs a good PR firm, a celebrity or many of them, and some super fundraiser that puts us on the news. What can this be? I pray all the time for the divine intelligence to come up with this and quickly. You are 100% right, NFers suffer too much. Please know that I am thinking of you and missing Mike too, for that matter. I have been so sad since he and Johanna passed so close to each other in time. I felt a bond to both of them. Love and hugs to you. Vicki

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Dear Carol,

Thank you for the kind words , who knows maybe I'll try writing I always said someday I'll write a book ... Seems there is so much in me right now it might be scary to see what would come out ... hugs Lois

Re: Re: Lois

Dear Lois...how about if you start with writing a book about Mike's life? You have him in you always, his poetry and you can fund raise with the sale of the book?

My tears are always with you....

Carol

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  • 2 years later...

dispite all this i lov life and really enjoy thesegroups for rsd and crps.If you guys wernt around iscream myself to death.A problem shared is a problemhalfed!!!take caretell me about yourself and family pleeze.your friend lois and tribe

Lois,

Wow talk about a plate full, I would say it is more like a platter full.

I know what you mean about the group. They are the only ones that really can understand what is happening to our bodies and why we can't handle what we used to.

Well a little bit of about myself and my family. I live in Oregon with my husband of 28 years. We have 2 very beautiful and capable daughters, they are both married and my oldest has my perious granddaughter she will be 2 on the 27th. She is so smart. Which sometimes gets her into trouble. She is my only grandchild at the moment. I am going to be babysitter her for my daughter so that they can get some more bills paid, they are insisting That they pay me so I said $100 so my daughter said that they would provide all her food supplies. She is worried that I will hurt myself I keep telling her that she isn't going to hurt me, I may be exhausted some days after I have watched her and in a little more pain, I told her that I would be hurting anyway whether

she is here or not.

So Lois I take my hat off to you will all the pressures and demands that you have

everyday.

I will keep you and your tribe in my prayers.

take care,

Lin

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