Re: you look good

[Guest guest]

I am so sorry you have to go through this. I had the same problem with a family member. She still does not believe I am sick even though I am in a wheel chair. Yeah like I am faking it. And worst it is my sister.

I pray for you to have patients with those who just don't understand and don't even try. You have a pain free night and sleep well tonight.

Jackie

you look good

Pomy,There is a book written by a girl who has MS - called --- InNeurosarcoidosis , Moish Pomeranc wrote:>>> Hi to all,>> I hope everyone is feeling aswell as can be.>> I have to get this off of my chest, because it's weighing heavy on me.I know this has been discussed many times by all the members, but I haveto do it. Someone who is close to me said, you're not sick, you lookgood and well! That person does not know hwo I fall asllep. It takes mea long time until I find the correct position where my ankles and kneeswon't hrt. The times I wake up because my fingers are stiff and I haveto pry them opem. Or the worst part, the pain I feel in my leg bonesthat brings me to tears and have to wait until it passes.>> I know that you are the only ones who understand this!> Pomy>>> __________________________________________________________> Explore the seven wonders of the world>http://search.msn.com/results.aspx?q=7+wonders+world & mkt=en-US & form=QBRE>

[Guest guest]

Thanks,

I guess we have to bypass the comments, but it's difficult. Maybe the answer is, if someone says that "you look good, we should say "that you don't"!

pomy

To: Neurosarcoidosis From: shadowme810@...Date: Sat, 29 Nov 2008 17:48:52 -0600Subject: Re: you look good

I am so sorry you have to go through this. I had the same problem with a family member. She still does not believe I am sick even though I am in a wheel chair. Yeah like I am faking it. And worst it is my sister.

I pray for you to have patients with those who just don't understand and don't even try. You have a pain free night and sleep well tonight.

Jackie

you look good

Pomy,There is a book written by a girl who has MS - called --- InNeurosarcoidosis , Moish Pomeranc wrote:>>> Hi to all,>> I hope everyone is feeling aswell as can be.>> I have to get this off of my chest, because it's weighing heavy on me.I know this has been discussed many times by all the members, but I haveto do it. Someone who is close to me said, you're not sick, you lookgood and well! That person does not know hwo I fall asllep. It takes mea long time until I find the correct position where my ankles and kneeswon't hrt. The times I wake up because my fingers are stiff and I haveto pry them opem. Or the worst part, the pain I feel in my leg bonesthat brings me to tears and have to wait until it passes.>> I know that you are the only ones who understand this!> Pomy>>> __________________________________________________________> Explore the seven wonders of the world>http://search.msn.com/results.aspx?q=7+wonders+world & mkt=en-US & form=QBRE>

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[Guest guest]

wonderful answer.

Jackie

you look good

Pomy,There is a book written by a girl who has MS - called --- InNeurosarcoidosis , Moish Pomeranc wrote:>>> Hi to all,>> I hope everyone is feeling aswell as can be.>> I have to get this off of my chest, because it's weighing heavy on me.I know this has been discussed many times by all the members, but I haveto do it. Someone who is close to me said, you're not sick, you lookgood and well! That person does not know hwo I fall asllep. It takes mea long time until I find the correct position where my ankles and kneeswon't hrt. The times I wake up because my fingers are stiff and I haveto pry them opem. Or the worst part, the pain I feel in my leg bonesthat brings me to tears and have to wait until it passes.>> I know that you are the only ones who understand this!> Pomy>>> __________________________________________________________> Explore the seven wonders of the world>http://search.msn.com/results.aspx?q=7+wonders+world & mkt=en-US & form=QBRE>

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[Guest guest]

dear Pomy, Two years ago at this time I experienced the same thing, but you look

so good???? Have you read Gilbert Barrs Me and Sarcoidosis? I had been reading

that book (for the 5th time) and the first thing I read after the comments. The

title of the next chapter but you look so good! It woke me up to problem of

telling family and so this chapter helped! I have a second book if you can't get

to the book store, I could mail it to you? But it sure helped my family to have

a better understanding of how we feel! Keep me posted, Anne p.s. Gilbert Barr

is known to many in our group.

[Guest guest]

Pomy,I am behind once again in emails, but I just want to say, I use a heated blanket on high when I go to bed, plus a heated throw that I wrap around my feet and knees and hips, my husbands sometimes complains that it's just too hot, I asked if he wanted heat or me lying there crying over the pain, he hasn't said anything since.

And I know how you feel about the wheel chair too. the other day my husband and I took my Mom to the airport (one reason I am behind, didn't want to be on the computer while she was here) anyway, my husband had to push me through the airport, no way I can walk that far, I can only do short distance. then we went to a furniture store and again I couldn't walk so did the wheel chair, when we got back in the car, he said that people were looking at me like I was faking, because I would get out of the wheel chair to sit on the furniture, People just don't get!!! If I go somewhere without my make up, then they ask if I'm having a bad day?? but I'm not like that, I like to look good, it helps me feel better, but then they don't get it!

I can so relate to you, and know it's not you, it' THEM!! God Bless, Marla 2008/12/10 Moish Pomeranc

Thanks,

I guess we have to bypass the comments, but it's difficult. Maybe the answer is, if someone says that " you look good, we should say " that you don't " !

pomy

To: Neurosarcoidosis From: shadowme810@...Date: Sat, 29 Nov 2008 17:48:52 -0600

Subject: Re: you look good

I am so sorry you have to go through this. I had the same problem with a family member. She still does not believe I am sick even though I am in a wheel chair. Yeah like I am faking it. And worst it is my sister.

I pray for you to have patients with those who just don't understand and don't even try. You have a pain free night and sleep well tonight.

Jackie

you look good

Pomy,There is a book written by a girl who has MS - called --- InNeurosarcoidosis , Moish Pomeranc wrote:>>> Hi to all,>

> I hope everyone is feeling aswell as can be.>> I have to get this off of my chest, because it's weighing heavy on me.I know this has been discussed many times by all the members, but I haveto do it. Someone who is close to me said, you're not sick, you look

good and well! That person does not know hwo I fall asllep. It takes mea long time until I find the correct position where my ankles and kneeswon't hrt. The times I wake up because my fingers are stiff and I have

to pry them opem. Or the worst part, the pain I feel in my leg bonesthat brings me to tears and have to wait until it passes.>> I know that you are the only ones who understand this!> Pomy>

>> __________________________________________________________> Explore the seven wonders of the world>http://search.msn.com/results.aspx?q=7+wonders+world & mkt=en-US & form=QBRE

>

Connect to the next generation of MSN Messenger Get it now!

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)