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Hi guys,

My computer isnt really working right now- I'm at the local library right now. I

just wanted to say how I had a great time at the conference meeting you all and

learning more. I hate the ones that couldnt make it wasnt able to meet- but

there is always next year! I had a busy week after the conference- sleep study,

PT and ENT appt monday after it then a pretty extensive tilt talbe and autonomic

tests Wednesday (which showed POTS). Still recovering from everything. They want

me to come back for another sleep study with bipap. And the autonomic tests lead

to me being put back on florinef, thermotabs and watching my BP and heart rate

daily and sending in reports to the nurses weekly. So far no help from all that-

more dizziness actually since ive been on these new meds. There is still talk of

a port if my fluid intake doesnt increase soon. Anyways- this week I have a

wheelchair eval and new neuro to see for seizures and other neuro probs. Then

next week see new GI dr- hopefully to look into feeding tubes or some sort of

help- I cant take these GI symptoms much longer. Dr. Gropman has been trying to

get me to see a peds GI just so I can see someone sooner- but my schedule is so

busy, cant even get into see them either. I'll try and keep yall updated. I am

praying for those not doing so well lately and my thoughts to everyone of

course. I'm also kept posted by Malisa and others over the phone. I miss my

internet though! Hopefully I'll soon have my home computer working so I can keep

more up to date with you all.

take care,

Adrienne

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