oh great big BIG HUGSSSSSSSSSSSSSSSSSSSS hoping for a home bound trip for you soon dear, sarah

Crossing fingers and toes, along with my prayers..

My prayers are for you Dej...

Update

I am STILL at the silly hospital! I am doing a bit better, but still unable to eat, or keep down regular foods. I am on hyper al or parenteral nutrition. My tummy has just gone on strike and refuses to work. Some MDs are telling me that this may indeed be some sort of an MS thing, and that the damage to my tummy maybe some sort of nueropathy. other MDs are saying this is a Porphyria thing (blood/urine still pending for positive dx) and other still are just guessing. I think they simply have no idea and when that happens, they are quick to lay the blame on MS. One MD actually said "we have no idea, and are starting guess." I was impressed.

There are also too many cooks in the kitchen. There are too many people wanting a peice of me. I did all the gastric empty tests, and it been determined that its taking about 30 hours for foods to move past my tummy (including water) so my tummy is absolutely in a paralyzed state. once in the small bowel, it does slow, but moves along.

I am frustrated, and tired of this. I have asked them to stop all the silly test, and guesses, and simply allow me the time and the energy to heal. It seems I would get a day of bowel rest, and then...someone else would want me to swallow barrium, or radioactive eggs, or a scope, and it set me back to the state of unhappy tummy.

One nurse actually said "wouldnt it be good news to have Porphyria and not MS?!" I said HEY! at the end of the day, someone is going to walk thru that door and tell me that I have an INcurable disease! an auto immune disorder that will stay with me, and create damage for the rest of my life! how is that good news? She blushed and left the room. Sheesh! I also get alot of "but you look so good from most of the nursing staff! what a bad thing to say to someone who is so ill.

Thank you for all the well wishes, and hugs. You guys rock. I will update as I can. I really dont feel well, and dont feel like staying plugged into the computer. will let you know when I can.

This sounds perfectly reasonable to me--allowing you time and energy to heal. I hope you can manage to persuade them that you might just know a thing or two about what is best for you.

Words fail me here.

Hang in there--better days are ahead, let's hope. I agree that it's good they admit they're guessing. Know-it-all medical professionals would worry me far more than ones who honestly say they don't know.

OH Dejibo--I haven't been on NT much lately but stopped in to see how things are going and was so sad to hear of your troubles. You are so strong for hanging in there! The PIC line is a godsend--I had one for a month once. Anyhow I'm thinking of you and hope you heal quickly and completely. You are so courageous!!

Wow Dej. I don't even know what to say, but i promise it won't be "you look so good"! I don't blame you for asking for a break to recoup. Your stomach is probably protesting the constant poking and prodding. I really hope they figure out what it is soon and get you feeling better. We miss you around here.

Gosh, Dej...wish I could come and hug you in person...know that you are high on our list of prayers...and I truly hope and pray they let you heal...

Deb -- Keeping you in my prayers.

Dej: just returned this tuesday from a weeks trip.

so sorry to still hear that you are not doing well.

you are in my prayers


Jappy