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Deborah B.

1:06:31 AM

Hi Mark,

Just a note of encouragement from someone some weeks behind you and as you know. . . also with a seven year-old on the protocol.

It's just plain tough and unfair for a child so young to be experiencing this. I am so in agreement with you on the ups and downs of this disease. I have days that I am filled with hope and can see all the benefits coming to us from being forced in a sense, to be as healthy as I know we were created to be.

Then the downs come. It's a three steps forward, two steps back scenario. We are better in some ways but persistent problems continue, especially for my daughter. Her lesions improve only to return. On top of that we are dealing with non-related stress that simply can't be alleviated right now. Gotta deal with it. Sometimes the really good advice given to sleep more, relax and eliminate stress just can't be followed no matter how much you'd like to. Many times the stress is not about making money, living the high life, or fretting about the unimportant, but about things like elderly parents who are dying, or family members who are facing life-changing crisis. You still have to be there for those who need you and yet try to get well at the same time.

So, I understand the 'need to vent' and admire your determination to end on a positive note. We will come through this crisis stronger and better but on the tough days it's hard to remember that. Yet I see character growth in my daughter that I never dreamed possible for one so young. This disease is far from what I would choose for her but I love the person she is becoming through it. She is facing this with more courage some days than I can. Reading some of the recent positive posts of those who are much further along than we are lifts me up and gets me through the bad days.

Hopes and prayers that today was better for you than yesterday, and that tomorrow will be even more so,

Deborah & Carrie

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