Lana-Re: Re: NIH surprise, catching up

April 7, 2004

In a message dated 4/7/04 10:03:04 PM Eastern Daylight Time, EDSLana@...

writes:

Hi Lana,

As today went on I found myself getting more and more upset about what he

said. I feel like instead of encouraginng me , he always lecturing me . I owe

alot to this doctor but I have felt upset with how he continually is telling me

that I need to accept things and stop hurting myself further by not listening

to him about what to do and not to do

.. He sounds so irritated with me and I feel like he is telling me there isn't

hope and to just give up I guess. Maybe this is nnot reallly fair. He thinks

if I do less, rest, take baby steps then pain will lessen and I can do more.

Sounds reasonable on one hand but I feel like I need to push through the

pain. Anyway, reflecting back on yesterday, it really upset me again as did the

thought that my POTS may be worsening. I was so grateful for the wonderful NIH

staff annd Dr. Francomano for taking care of me. I was at the perfect place!

>

> I am

> >just not ready for that. I can't see myself there. I know many of

> you have gone

> >through this. My doc even told me to talk to one of you that is so

> close to

> >me that sees him too . She and I have talked about this in the past.

> >

> >Well, enough. I am better this morning and have missed you all.

> Hopefully, we

> >will find out about Sara today.

>

> , if you would just try one, you may find you feel so much

> better, that you will wonder why you didn't do it before! Just a

> thought. Praying for Sara - please let us know asap, OK?

>

> Love Lana

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