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Update on Roselover...


Roselover
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Hi everyone. Thank you to all of you who have been asking about me. I just wanted to give you an update.

First, I hit bottom on Sunday. Went for IV's (saline and zofran) was miserable through the night and Monday morning my doc admitted me to the hospital. I just got home this afternoon.

Basically, they kept me on IV's, and kept me on pain meds and zofran until I could tolerate a little food. I have an appointment with the GI motility specialists at Mayo in November. They are just trying to help me hang on until that appointment.

Vanderbilt is out. I spoke to them this morning and with the way my stomach is going it is going to be impossible for me to be off all my meds and make it through with the study. They said I could reschedule later if I want to. But I see the Mayo GI in Nov and Dr. Grubb in Jan so I'll wait and see.

All in all, my spirits are good considering. I am very disappointed about Vanderbilt and a little nervous about how the next five weeks will go until I can get to Mayo, but just have to take it one day at a time.

So there it is... I've missed you all. Hopefully, I can be around a little more in the coming weeks.

Love Roselover

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Hi Roselover,

I can understand how disappointed you are about Vandy. A friend of mine got cancelled 3 days before the appointment because she could not stop some of her meds.

I got cancelled (for 75% of the protocols) once I got there because I was too sick. It's difficult physically and emotionally to be tested for research when we are badly sick. At Mayo you will be tested for yourself and doctors will be trying to figure out your problem.

I will be keeping you in my thoughts.

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Roselover,

Thank you soooo much for updating us on what is going on with you...

I am soooo sad that you are going through so much suffering and difficulty right now.

I have a big trip to make soon to a doc too and I am just dreading trying to do it...although it is certainly not as far as you have to travel. But, it makes me feel so overwhelmed---even though we both know how much we need to go to these appts. Somehow I am just hoping that the strength will come and I'm trying to take it one day at a time until then! We somehow do what we have to do no matter what...and I sometimes wonder HOW i ever did it...but I do...and I know you will too. I am probably not making one bit of sense! Sorry!

I just wish we could all get Harry Potter wands and that they would WORK for REAL and we would all feel better!!!

Sending you many hugs!

Emily

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I'll be intereted to read about what the motility folks at Mayo have to offer you. For now, I'll live vicariously through your experience. I had to stop my pain management regimine in order to perk my guts back to life...well...kind of to life...it's like watching the grass grow without rain...slooooow

Nina

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Hi

It always gives me pause when I'm too sick to do testing. The problem is that until they do testing the treatment also gets delayed, and it's a cycle. When these things happen I try to console myself that maybe the place I was supposed to do the testing would have been one big waste of time and valuable energy. Hopefully the Mayo GI will be able to do for you what they may not have managed to do in two tiring weeks in Vanderbilt.

Thinking of you,

ariella

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  • 2 weeks later...

rose-

i'm sorry this is so delayed but i wanted to let you know how much you've been on my mind & in my heart. i can only imagine how tough it must be to have to cancel vanderbilt but am glad to hear they were open/understanding about your being able to reschedule later if you choose to do so. and it does sound like the motility issues are the bigger thing to focus on right now, which - as i've said you you before - would NOT have been vandy's focus. i honestly lucked out by finding a med there that helped me motility wise....it wasn't their goal, and if i'd been there a few weeks earlier i wouldn't have been able to do the study (b/c of my GI issues) either...i just "snuck by" as it was in terms of how much i could keep down, etc.

but anyway, details aside, i just wanted to say hi & let you know that even though i've missed replying to some of your posts/updates it isn't b/c i haven't been thinking of you. the GI stuff is super hard & can get scary when it doesn't seem to stop so i really hope you get some awesome guidance from mayo. i actually am SO thankful that i just connected with a great GI doc here in cleveland last week that offered me several options med wise and totally gets/knows about autonomic issues, dysmotility, etc. i almost fell off my chair!

so...i hope you find someone just as awesome at mayo & that you're able to make the trip as well as possible.

keep on keepin on,

:lol: melissa

p.s. one thing that helped me stay out of the hospital & off of tubes, etc, last winter spring were boost breezes...i can't recall if i've mentioned them before to you, but thought i'd throw the idea out. not as a fix all by any means but just perhaps as a little help to keep up your strength. they're harder to find than boosts &/or ensures & essentially are the clear/juice version but have some protein in them (as well as other goodies). i was able to tolerate them - albeit slowly - long before i could keep down a regular boost or ensure.

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Hi, Roselover. Sorry about Vanderbilt and your "tummy troubles," as my little ones would call it. I wanted to let you know I'm thinking of you and hope you get answers from Mayo. I do hope you feel better soon. Please let us know how things are going when you are able.

Melly

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