Really sick...

[Roselover]

Hi All,

I haven't been posting much lately. It's about all I can do to try to keep up to date on reading the posts.

I have been really sick and in the past week, I haven't been able to eat at all. I've lost 8 lbs and I'm so tired of all this. I'm keeping fluids down some, but also have diarrhea off and on. No one knows what to do for me, so here I sit, hoping each day that I'll be able to eat a little bit tomorrow.

I know so many of you can relate. I just wanted your loving support and for you all to know I am reading even when I'm not writing.

I am supposed to go to Vanderbilt in two weeks. I also have an appointment with the motility specialist at Mayo in November, but I haven't figured out if I can actually get to that appointment. Oh what a life.... At least I'm here on the calm west coast where all we have is a burping volcanoe! I hope all of you in the gulf coast area will be OK... I'm praying for you.

With love to you all,

Roselover

[DancingLight]

Oh Roselover,

I have missed you so much on the board...I know you are 'away' from us b/c you are too sick to type. I have only been able to look at a couple of posts a day--so I am not keeping up with the news well either here. It's so hard to be away and not be able to type isn't it? I hate it!

I am so sorry you are having such a hard, hard time. I wish I knew what to say or had the magic pill!

Just know how much you are loved and thought about!

As for travelling...those are big trips. I won't have to travel that far to see a Lyme doc, but I too feel caught in a catch 22. How do you travel when you are so sick, yet travelling to these docs seems the only way to get some answers and quality of life back. I don't know how to balance it. I'm working on 'instantaneous travel' techniques! HA! Ever read The 21 Red Balloons? Well, it's a kid's book with instantaneous travel! I wish!

Then, we could even go to our DINET spa and all meet!

Thinking of you so much and sending you hugs...

Later alligator!

Emily

[morgan617]

Roselover, can definitely relate, I'm sitting at home while the rest of the family goes to a nice place to eat. I refuse to waste the money and can't handle the noise, but also refuse to not let them have a nice time.

I hope you start feeling better soon and can get some answers at Vandy. You'll be in my prayers. morgan

[lalalisa]

Roselover,

I hope you feel better soon! It is so difficult to be sick all of the time -- then when we get even sicker (than usual) it's hard not to get discouraged.

Good to see you on the board. I hope you improve quickly!

Lisa

[Dizzy Dame]

Hi Roselover,

I don't think we've talked before, so I wanted to say hi and also that I hope you feel better soon. It's no fun being that sick, I got amoebas last year and had a period of about a month where I wasn't able to eat anything other than oatmeal, and even then I had a hard time keeping it down. So I know how awful nausea is, but just know that it will eventually pass (hopefully sooner rather than later ).

Take care and get well,

Lauren

[Poohbear]

I wish you weren't feeling so crummy!! I know it's hard to hold on to the hope sometimes that things will get better but please try.

I wish we all lived closer together so we could offer more practical "every-day" support to each other.

Please know you are missed when you aren't able to post but we all understand the ups and downs of this condition. We want you to do what you need to to take care of yourself.

Here's an e-hug (((((((HUG))))))

Hoping you will soon be feeling much much better.

TTFN,

Poohbear

PS...I know we are all very different on symptoms and things that help. When I get really sick to my stomach like you are talking about with not keeping food down and having bowel trouble there are two things I've found I can eat a little of and that's waffles with just a little tiny bit of syrup and pudding.

Both of these seems to settle my stomach just a little and stay down.

[faithinspires]

Roselover,

Hi, I am a new member, but sorry to hear you aren't feeling well. I hope you are feeling better soon!

[Aprilmarie52]

sorry you are sick. I hope you feel better soon! We miss you!

[Ernie]

Hi Roselover,

I miss your posting but I understand how it difficult for you to keep up with the postings. I have problems reading them also. I have to choose what I read. I would like to answer everyone but I just don't have the time or the energy.

Hope you feel better soon.

[Radha]

i know how terrible it is not to be able to eat, especially when you are surrounded by ads that show foods you cant have!! i cant eat for different reasons, but i can relate, especially when your family changes their plans coz of your problems and how guilty that makes you feel, hope you feel better soon,

radha

[corina]

hi roselover,

i missed you around. i'm very sorry your feeling this bad. i really hope you can get some help at vanderbilt and mayo. i do hope you can make the travelling because i would want you to get answers and maybe some pills to make you do better! i always hated it to take meds, nowadays i feel like: please give me some more, hoping that it will make me feel better

are you able to do some painting?

wishing you the best roselover, hope you will feel some better soon!

corina

oh and em (or anyone else), what does: "i too feel caught in a catch 22" mean?

[leah1321]

Hey

I am sorry you feel crummy. I am not sure if this is happening where you are, but my friends in NYC have all had something like the flu this last week with violent stomach issues and high fevers. They all have not been able to eat (more than half my largest class was missing on Tuesday with this and even more were out Monday). I have felt too terrible with other stuff to hang out with people, so I have thus far avoided this (knock on wood). I know when I get stomach flus, I am sick for several weeks after with GI problems. I hope that this is what is bothering you because eventually you can recover with IV fluids and boost shakes and such. If you get this regularly, as I did for five years, then I am going to tell you that I found a secret use for a medicine that Dr. Lacey (who was a brilliant Johns Hopkins motility expert but has disappeared) gave me: ultram for GI pain and to slow motility. It worked miracles on my body and it helped so much with the GI pain that was just debilitating. I have since put on 35 lbs and am now a normal weight, maybe even 5 lbs too heavy. Before that, I was struggling to keep on weight and had 1000s of calories a day when I could and liquid shake supplements when I could not eat a thing and I looked so skinny.

I am not sharing that for you to do it, I just wanted to tell you about how I had success after having GI dysmotility my entire life and severe, disabling dysmotility for 5 years.

Also, get lots and lots of tests. Everything they suggest, even if it sounds terrible (and it will be), but they are so helpful and worth the stress. I also have celiac and upper GI paralysis (lower GI is very rapid) so I have some crazy diet stuff that have helped tremendously as well. I hope that you feel better soon and I am thinking of you.

-Leah

[persephone]

Hi Rose:)

I've missed you on the boards so much! It's good to see you around, but I'm sorry it's not under jollier circumstances.

Know that we're all here for you, and keeping our fingres crossed that Vanderbilt will know what to do to help make things better for you, chuck.

Hugs

P x x

[Laura]

Hi Roselover, You've had such a tough time this last while. I hope your appointment helps you get set up with something that will provide relief. I sure hope you are able to go. Sounds like what you are doing now isn't working very well for you. Maybe Vanderbilt will have some different suggestions of things to try. Hang in there! Laura

[Roselover]

Oh you dear friends make me cry - in a good way. It's so nice to know I am not alone and there are friends who understand and care. I am overhwelmed with all of your love, Thank YOu!

I took my BP last night and laying down it was 77/51... YIKES! This morning I am shaky and dizzy so much so that I can not walk to the bathroom by myself. I HATE this! I've drugged myself up this morning and hope in an hour or two to force down a banana and hope it does OK. The past few days, I've been able to eat a peice of toast on the meds, but when they wear off I get diarrhea which of course is not helping me stay hydrated. I am afraid I may have to head to the hospital. Thank you so much for your prayers.

Em... YES I have read 21 Balloons!!! We really are kindred spirits, huh? I'm in on a visit to the DINET Spa! Can't wait to see you all there!

Can't think anymore... I'll keep ya updated.

~Roselover

[Guest Julia59]

Roselover,

I'm sending you prayers and hugs---and I hope you are able to feel better soon so you can eat a little. I don't know what you are able to tolerate for the nausea, but my dad always tries a few sips of good old fashioned coke. I hope the specialist at the Mayo Clinic can help you with the gastric motility problems you are having.

I know how it feels to have motility problems---but mine are on the lower end, my stomach empties fine. I can only imagine how bad it is for you right now as I am fortunate that I don't get neuseated very often. There was only one time where I wasn't able to eat for an extended period---and I lost a lot of weight---- fast.

Maybe you can try to nibble on plain cereal fortified with vitamins---just tiny nibbles. That is what I did----and I believed it saved me from getting worse with my other symptoms----i.e.-----> fatigue, weakness--ect..

Don't stop hoping for that day when you will wake up feeling better-----that day is coming. You just have to get down to the bottom of this so you can get treatment that works.

Take care, and please keep us posted when you are able---and don't feel bad when you aren't able---we all understand.-----------------------

Julie :0)

[DancingLight]

Well, I wish I had more words of wisdom, but I think you sound and feel about how I do....and it just plain stinks! (Sour puss today! )

Anyways, have I already told you about the liquid juice boxes that I ended up taking after surgery? They are 250 calories in 8 ounces, complete nutrition in a box, specifically made for people with severe GI problems? They are something that you would need to see about with your doctor but I wouldn't have survived without them as I couldn't eat at all for a copule of months after surgery. They do not have any of the stuff in them that I can't eat allergy.

Just in case you are getting to that point of wanting something like this...they are from Scientific Health Solutions (SHS) and called EO28 I think. You can ask me more if you are really interested. I don't want to push at all. I just remember how it is to not be able to eat. I would throw everything back up too or have diarrhea. Gotta love it when it's coming out both ends! UGH!

Anyways, one thing that I had never thought about was that the longer you go without eating (even though the last thing you want to do is eat) the worse havoc it wreaks with your autonomic nervous system. This is what my POTS doc told me. So you get in a vicious cycle. And it sounds like your POTS symptoms have really just gone nuts (mine too...i'm like you lying down right now and still no bp).

Otherwise, the only things I eventually go down were pureed soups (sounds gross, but it worked--even to do vegetable soup with meat in it, somehow I could do this and it had protein and nutrition), Jewish penicillan (chicken rice soup), hot rice cereal with honey or applesauce in it, or Rice Dream shakes with rice milk, rice dream and some froz. or fresh fruit in the blender. These are high calorie and sweet, which for me makes them easy to get down. And some jello and things like that.

I lived on the Juice boxes and rice milk shakes mostly though...

I don't know...I am just putting ideas out there, b/c when I am in a crsis situation, I have a really hard time brainstorming things. (i.e. right now with the lyme and stuff, others are pulling the weight for me...).

I just care so much about you...and sure hope that they have instantaneous travel soon so we can all go to the spa!

Emily

p.s. corina...gotta think about how to explain the catch 22 thing! i'm not good at that. i will consult with my teacher mom!

[steph37822]

oops

[Guest Mary from OH]

{{{{{{Roselover}}}}}}-

Hugs to you my ANS friend!!! Motility disorders stink!!! My daughter is SEVERELY effected from her stomach to her anus. She suffers horribly. I can totally relate to how you are feeling. Unfortunately for her, all hers are SLOW. However, we have always struggled with weight issues with her and she has had diarrhea her whole life, although she is unable to pass it on her own.

I pray that you are up to your travels and that the Drs are able to gain insight into treatments for you!! I've missed chatting with you!! I wish you peace and a break from the pain of everyday life!!

Hang in there!!

[DancingLight]

OOOOHHHH steph, you're good! that explanation was soooo good!

did you also catch that i posted about topamax a long time ago when you asked me how i went off it/if i weaned off of it??? i wanted to make sure you had gotten that one too...

yes, that is how i feel about even getting to the local doc...they know i'm coming and get ready so they can lie me down right away. sad, huh? as for the ER...i hear you! you think, i need to go to the ER but i'm too sick to go! and how will i check in. i always lie down and they are like, what are you doing?!

anyways, i'm so deep in the hole, but your post made me smile so big. and you're sooooo colorful! oh, my sassy steph!

i am going to see if i can manage a book on cd...i'm listening to one of your favorites right now! tears of a giraffe! no. 1 ladies detective agency!

later alligator!

eversogratefulforthecatch22expertiseem

[corina]

thanks a lot steph, you explained very clrealy, now i hope i will remember

and thanks for thinking about it, em, i know you have a difficult time!

roselover, i'm sending you a big bouquet of roses, the soft orange with a tiny bit of yellow in it (which are my favourites), i still don't kow their names but hope they will help you feel better a bit (or at least give you a smile!).

warm wishes

corina

[DancingLight]

Roselover,

Are you still out there??????

I've been thinking about you a lot lately and wondering how you are doing and if you got any relief from you nausea...etc...

Sending you butterflies!

Emily

[MightyMouse]

Sorry I'm so late to say that I wish you better health... I've been dragging too, but I'm doing slightly better and trying to catch up. BTW, I still have roses blooming as of today. I cut them back two weeks ago in preparation for the Fall, but they had other plans Salmon colored pink roses just for you.

Nina

[Poohbear]

I'm thinking of you as you prepare to go to Vandy!!

[melly4]

Hi, Roselover. I don't think we've met, as I'm relatively "new" here. But I wanted to give you a formal hello and say that I hope you feel better soon. I can totally relate to the hypermotility and weight loss. Good luck at Vanderbilt.

Take care,

Melly