Roselover

Just wondering if anyone knows of long term side effects from taking Reglan. I know the problems some people have in taking it with muscle twitches etc. I haven't had those and it really seems to help. Just wondering about staying on it long term. Thanks, Roselover

HAPPY B-DAY!!!!! Hope you both have a great day! Love Roselover PS:.... well that DIDN'T work! It was supposed to be a colorful b-day wish

Happy Birthday Corina! I'm sending you a virtual bouquet of roses! (Are yours blooming beautifully?) Here's my favorite b-day song.. Hippo Birdie two ewes, hippo birdie two ewes, hippo birdie dear CORINA, hippo birdie two ewes. (It's even cuter with pictures:-) ) Love Roselover

Blackwolf, I have lots of pain too - fibro and other. Fortuneately for me though, I can take narcotics when I really need it. I am just now trying Ultram... don't think it helps much though. My doc has suggested Neurontin so it sounds like I am behind you in what I am trying. I will be interested to hear what you learn from you doc appointment. Expect the best from the doc and be prepared to respond to the worst. AND I must say that, No, it's no selfish to spend money on yourself to swim. If it helps even a little, your family benefits from that so it's really not just for you. I have to try to think like that too - it's hard! Best of luck, Roselover

How nice to hear from you Tearose. I need to get to a nutruitionist too sounds like it really helped you along with the other things you mentioned. Hurray for how well you are feeling! ~Roselover

Thanks everyone! I hope someone else can learn from this and enjoy making them too! I'm loving it! I just did three new cards the last two days. They are rose paintings and then cut apart like shattered glass and glued back onto a card with embossing inbetween. I'm calling them "Shattered Love", "Shattered Peace" and "Shattered Innocence". My hubby says someone is going to think I'm depressed. I told him "No cause I ususally paint butterflies and stuff. It's just an artsy idea". He just laughed... we laugh a lot in our house! :-) Love Roselover

Hi everyone, We had a discussion about hobbies and crafts a while back. Well, I've discovered something I thought maybe some of you might like to do. They are ACEO's - Art Cards Editions and Originals. These are small trading card size peices of art - 2.5" x 3.5". Some people use colored pencil or paint or even do collage. They actully sell on ebay and I've sold three already! They are so small that it is easier to spend a little time doing and I thought maybe some of you who are bed ridden might even be able to create some. There is a discussion on ebay for ACEO's if you want to learn more or you can just ask me - I'm still learning though. Here are the links to a few of my cards that are listed now. I'm NOT looking for you all to bid - just want you to see what I'm doing and you can also search Ebay for ACEO to see the kinds of things others do. Nina, Michelle or Melissa - if it's not OK to put these links on, then please feel free to edit this post. http://cgi.ebay.com/ws/eBayISAPI.dll?ViewI...AMESE%3AIT&rd=1 http://cgi.ebay.com/ws/eBayISAPI.dll?ViewI...AMESE%3AIT&rd=1 http://cgi.ebay.com/ws/eBayISAPI.dll?ViewI...AMESE%3AIT&rd=1 http://cgi.ebay.com/ws/eBayISAPI.dll?ViewI...AMESE%3AIT&rd=1 Love Roselover

Wow, Ernie! With often you faint what a huge relief this must be. I am very excited for you! Hope it continues to improve... I'd love to see you "skipping" in the morning! Love Roselover

Yes, Sunfish, thinking about today too! Sending a virtual bouquet of flowers for your first day! Love Roselover

I have autonomic dysfunction and I'm pretty confident that both my mother and my sister have it too, thought it hasn't been officially diagnosed with either of them. ~Roselover

Sunfish, I was glad to see you posting again - I missed you. Hope you are continuing to recover from the infection. Please let us know how the Lunesta goes. I'm curious as I have considered switching to it from Ambien (others have too I think). Love Roselover

Hi Danelle, Click on this link and you can read Sunfish's detailed write-up of her trip there. http://dinet.ipbhost.com/index.php?showtop...bilt+chronicles ~Roselover

I've had tingling in my upper lip and sometimes a tickling sensation, like something is brushing against my lips. The neurologist checked out eveything she could think of. Doesn't know what it is. I also have numbness on my tongue - kinda like I burnt it on something hot. I can talk and eat, but it feels weird. ~Rose

Stacey, I totally hear you and understand your feelings. I too am married to a goof ball! It does make life fun, but I've faced so much sadness in the losses lately. I can relate to your statements about how we used to talk about more than rehashing the last doctor's visit and preparing for the next and spending our time together going to them! We've been married 21 years and we too are happy- happier than most marriages without illness - and yet, there are so many dreams we had that are passing us by. The things we can do on a "date" are so limited it almost gets boring. My husband is sweet and stands by me and grieves with me and is so unselfish - you'd think that would make things just fine even with being sick. But being sick is just never fine - it's horrid - but it's what life is right now, and so we make the best of it - laugh all we can and try to enjoy the little things. It's hard. ~Rose

Hi everyone, I've been really struggling with stomach issues. Six weeks ago I was hopsitalized for 5 days for a partial obstruction of the small bowel. Last week I had a reoccurance and lost 6 pounds in a week. I'm doing better the last three days and have even gained one pound back with eating again. BUT... I saw the GI specialist today and he gave me NO hope that I can control these episodes or that he can help me in any way. I'm on the west coast of US and he suggests Mayo... for motility... I just don't know what I'm going to do. I am so sad and disappointed to be facing one more major problem that I can't control. The Reglan helps me when things aren't hurting, but the flare up of the bowel is so painful and I can't eat for days. Stacey just posted about her 10th Anniversary and the word that caught my attention a few times was sad... yes... I too feel sad over the losses right now and sad to face one more thing that can flare up. On a positive note, I've been accepted into Vanderbilt for a 12 day stay. I know there's a lot of different opinions about doing this, but I've decided to go for it. Maybe I'll get some help. AND maybe there's a motility speciaist there that I can see? Well, you are all so loving and kind and I send you all a big hug, because I know as you read this you are also sad for me and for yourselves as well. BIG GROUP HUG! ~Roselover

Emily, Thanks so much for the idea. I haven't been posting much because of a lack of concentration. I can skim but that's as far as I get. I've been trying to read the first book of an old series I loved many years ago about the formation of Isreal as a state following WWII. I am finding it so hard to concentrate and read. So so sad because reading has always been a favorite passtime. I love children's books too! The best one I read last year with my kids was called the Golden Goblet - about a little boy in old Egypt. We also enjoyed Master Cornhill about a boy in London during the plague and the great fire. I also love Agatha Christie and I love Jane Austen novels. In fact, yesterday I was really sick so I watched my favorite movie "Persuation". OK - struggling to type so better go. After 'while croccodile! Roselover

So glad to hear your news Lois! Hope your recovery is goes well and smoothly. Will be praying about the pacemaker situation. Take care! ~Roselover

Wow, very interesting Dayna. I wonder if anyone will have any ideas about this? It makes me want to journal my good and bad days and see if there's any cycle. I can never figure out why I suddenly have a good day or several in a row, and then boom, back down. I've tried hard, journaled foods etc but still can't figure out triggers. Thanks for sharing. ~Roselover

Hi Persephone. I was so disappointed for you when Oxford looked like it wasn't going to be possible. But deep down I felt like you were supposed to be there and it would work out. Didn't want to say that cause no one wants to hear that when it looks hopeless but now I am SO excited you are going! You'll have a blast in that beautiful old city and with your studies. I am a C S Lewis and Tolkein fan so when I visited Oxford I had lunch in the pub where the 'Inklings" met. I'm sorry about the other rough things in your life with your Papa and with finding care for your POTS. I can understand and relate to struggling to find good doctors. Flying to see Dr. Grubb isn't an overseas flight for me, but a very long cross country one. I hope you get some help. ~Roselover

Carmen, as a mommy, my heart goes out to you. It's terribly difficult not to worry and when something like this shows up it's even harder. I really hope it's nothing, but I will be praying for healing for your little girl and for strength for you. Love Roselover

I too have just been diagnosed with Gastritis. I've had acid reflux for a long time, but wondered if the gastrisis was related to the dysautonomia and I have delayed gastric emptying. Prilosec works OK, Protonix works well but may be causing headaches and I take reglan with meals to help digestion. I haven't tried aciphex. Good to hear from you Linda. Sorry you're dealing with this too. Last night was not fun for me as I think my bowel obstruction is flaring up again. Hoping I can avpoid another hospital stay. Love Roselover

Ya know Morgan, I've read your post and all I can say is that I don't get mad easily, but this makes me MAD! Why and how could they treat our Morgan this way? I'm so so sorry you had this horrible spell and that on top of it you were treated carelessly. Just wanted you to know I cared too! ~Roselover

Hi Katherine, I'm a little slow in posting on this topic, but I too have just what you described. I also get it on my hands, have had it occaisionally on my lips and my tongue. I've had an MRI and nerve conduction study and the Neurologisit said I should have it done again in 6 mos to check if there are any changes but she dosen't really know what it is. Just so you know you're not alone. ~Roselover

Sophia, I logged on late tonight and missed reading your post before you talked to your MIL. But I will pray for you tonight when I go to bed (soon). I too have a MIL with early Alzheimers. She doens't know. She knows she has a hard time with memory and she is not taking a "memory pill" and she thinks it is helping. It IS helping. She visited just last week and though I still see the symptoms, they have actually improved since last fall! I pray your MIL will get on meds soon too. Love Roselover

Em, yuck! I hate sleeplessness! You have my permission to be a sour puss this once! I had a sleepless night last night and ended up taking a full 10 mg of Ambien instead of my reguluar 5 and still didn't sleep well. Ughhhhh! I hope it's not wearing off. I asked my doc about taking it so long ( been on it about a year 5 mg most nights but not every night.) She said I should stay on it until I see Dr. Grubb in January so i guess it's another 6 months for me. I'm hoping the dosage is not wearing off. I have restarted a supplement that has helped a lot in the past. You might want to give it a try with the Valerian someone else suggested. I haven't tried Valerian yet, but am just about to. The supplememnt is call ZMA. Its Zinc Magnesium and B6. NO... it's not too much B6, I've checked. It'll take 4 - 6 WEEKS thought to really take it's most effect. Start with one for five nights and then up to two a night. It's not supposed to be taken within an hour of milk - which you don't drink anyway. It doesn't help me fall asleep like a sleeping pill, but I feel more relaxed and I stay asleep all night with it. I can give you the website if you're interested. Also, I think someone recently mentioned the new sleep aid Lunesta. It's supposed to be OK for long term. That's what I was going to ask my doctor for if she thought I should stop the Ambien. So now, I'll sing you a little bedtime song and maybe that'll help. "Go to sleep now my pumpkin, I will tuck in your toes. Go to sleep now my pumpkin, for to me you're a rose." Sleep tight and don't let the bedbugs bite! Love Roselover