RE: how much worse could it get?

[Guest guest]

Alyssa,

Just as Barb stated, I will be praying for you, it’s not fair

having to deal with something so awful at such a young age, I’m sorry. I

have a niece that is only 3 with juvenile rheumatoid arthritis, and she is in

pain every day, and that is just not fair either. So all I can do is pray that

God will give both of you a healing.

Blessings,

Marla

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis

Sent: Tuesday, June 27, 2006 3:20

PM

To:

Neurosarcoidosis

Subject: Re:

how much worse could it get?

Alyssa,

You have the same name as my middle daughter, she's 17.

I am so sorry for all your going through, I can not imagine how

difficult all this is for you. I will be praying for you, for the

surgery to be successful, for remission and for some rest for you. I wish

with all my heart that there was more I could do. Please take care

and when you feel up to it, please let us know how you are doing.

Connie

" barb J. "

wrote:

Alyssa,

I am so sorry for what you are going through. I am kind of new to the

group and I don't know you but your email touched my heart. I can see how easy

it is for you to give up now and how awfully hard it must be to go on, but

please don't lose hope now. Things are being done and I pray that this next

surgery will help and you will find the medication that works for you. Do you

have faith in God? I can understand if you can't see where God fits into your

life right now, but surely he does. We cannot understand why we are given

such trials in life. And oh, at such a young age it must be

terribly hard to have your life spent in hospitals and being

sick rather then being out living life to the fullest. I will pray for you

every day and I will pray that God shows you what his purpose is for you. Even

when he gives you such a burden he puts you where you are for a reason and he

has a purpose for your life. Don't give it up. I am sure that there are many

people who love you. I can tell by your email that you are a warm and vibrant

young woman. Let's pray that he heals you. If you are not a christian person,

forgive me and press delete. I will pray anyway.

Barb

castawayfay

wrote:

I'm sorry I haven't posted in a while. I've been in the hospital since

March. Turns out, I don't respond to prednisone or imuran. (120 mg of Pred daily since last june!) Ive had

2 more brain surgeries (bringing my total to 5).

I cant walk because of wasting due to pred. Ive got severe diabetes,

insomnia, and hair loss. OH! and I start chemotherapy this Friday.

I started a betting pool: will she make it to her 26th birthday.

I just wish this could've happened to me later in life. I'm

missing my prime because of this disease. And its taken 4 years- it just keeps

getting worse.

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