Hey Monster (Betsy, I thought I came up with that name uniquely! lol obviously great minds think alike!)....

How's it going? Anyhow, I wanted to talk about nausea (having spent large amounts of today with my head in a bucket! I think it's releated to the blood pressure and headaches - but I have given up trying to work out what is what is what!). Anyway - I find (personally) that the nausea spikes when my pain is bad and when my blood pressure goes too low. It sucks! However, I take domperidone for it and I find that helps quite abit. (motilium). Oh gosh! just while I was trying to discover the US form of domperidone.. guess what it is? yep, an inhibitor of dopamine... guess what one of the causes of dystonia is? yep, you guess it, dopamine? so... my drs appear to have had me on a med that is making my dystonia far worse! geez... a phonecall to the neurologist may be needed.

Anyhow, after that amazing discovery... I have forgotten where the rest of this was going! Just going to say I know what the nausea is like and it sucks. I have found that Pepto-bismol helps abit.

Your dr sounds awesome!!!

I am so glad your mum agreed to sky diving It's going to be great I'm looking forward to it! Might even drag you zorbing if I find a centre that will let us Zorb! (actually, no, rolling down a large hill suspended in a 10ft bubble with a bucket of cold water could be rough!).

About mums and health - mine is unique, but rocks. As she is a nurse (orthopeadic army) she has quite a background in stupid limbs, just none in chronic pain! she has come up with tons of innovative solutions which have really helped over the years - without her I know I would be on a PEG/ NG feed and would probaly be at alot worse now! admittedly there are times she drives me insane about the RSD. Your mum does sound great

Love ya tons and tons and more later!

Froggsy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

She told me one other person came up with that name...it was you? Well, that proves it...we're both insane!

-Bets

true! at least we are not alone!

xxxxxx

Hey girlies... thanks!!

Well, Frogga just did come up with that name, Bets; a friend a year or so ago started calling me that too... so since I told you, now there are 3 of ya calling me the Monster!

Froggsy- horrid day! I have awful nausea, vomiting, high/ low blood pressure, headaches, faint feeling (luckily I haven't passed out yet). SO, I have been hanging around in bed listening to some awesome mystery books on CD! Yippee! I have gotten engrossed in the stories now, so it's helping keep my mind of the pain... erg...

I have been taking some Mylanta, but wanna get Pepto Bismol too... perhaps tomorrow- ya know, it's shopping day, and I usually go along. Not sure that I *should* though... trying to weigh it out. I know that I have been over doing it... grr... I should've learned before this!! Anywho, the Mylanta has helped with the heartburn and that, but not for the nausea and vomiting... grr! How can any meds stay down this way?! I am getting so tired of this, and I don't see how I can do this much longer... sure is hard!

Sounds like you are faring just as well as I! ((HUGE HUGS)) this stinks for sure, and I know exactly what you are going through atm. Love you dear Rosie!

Thanks! Sure glad that at least one thing is settled- the doctor.

Yeppers... I know that the Baclofen is working, hooray! But the Celebrex I *think* could be making me sick... not sure on that one.

Hmm... that's dumb about the meds/ dystonia! What are those doctors thinking?! Are you going to mention it to any of them?

Bets and Ada: perhaps I will pick up a small box of that med and see what it does... and I'll be sure to check on drug.com for the interactions. I wish I could get rid of the nausea... maybe!

Sending you ((HUGE HUGS)) Ada, it must be SO entirely hard! I am thankful for mom, plus I do have friends who would kick my butt if I tried to stop fighting... huh, Frogs and Bets?!!

Yup...I'd get Frogga a ticket to Newark and I'd drive over there and pick her up so we could kick your butt together! Good thing the threat alone works quite nicely, right??

Just kidding...I know you'd never give up!

Love ya,
Bets

I just read your post and am sooo happy you found a good doc. I am sad, though, that you have full body RSD. I hope the new meds can get you back to enjoying more of the things that you love.
Just want to give you some encouragement - You said you would never get married. Not all men want to have children. You may find a prince charming that is so in love with you that he doesn't care. Actually, you probably will. You are so smart & beautiful. And don't forget that someone just may come up with a cure. By the time you are old enough to get married (I personally think you should wait awhile ) someone may have a cure.
Anyways, your new doc sounds so good. I'm glad you found someone you can trust & believe in.
Linmarie

I know you're just kidding but...

All 3 of us will have to meet up!! Sometime, right?!

Thanks, Linmarie! You made me feel so much better... I know it's possible, but I don't want to expect that, in case that will never come to pass. And, as my one friend reminded me- there is always adoption too!

Thanks again!

That is great news Vanessa. I always tell everyone here to keep trying doctors until they find the right one. I'm glad you didn't give up. Sometimes just talking to a doctor who is kind and compassionate lifts your spirits and makes this RSD thing a little less of a nightmare. Now, I must tell you a little story. When I was 21 years old I found out that I would not be able to bear children . I was devastated and thought my future looked dismal. After all, who would want a barren woman? I wouldn't even date anyone because I knew eventually I'd have to tell them and they would probably dump me. Well, when I was 23 I met someone who I couldn't resist. After we dated for a while I told him what the doctors had said. He was very quiet for a moment and then told me that he loved me for who I was and not for any children that I might have. We have been happily married for 28 years now and he is my best friend.{ We found out 10 years into our marriage that he was not capable of having children either so I guess we were made for each other!] So, please don't think there is no-one out there for you. When some young man falls for your delightful personality and undying spirit he will still love you when you tell him your situation. If he doesn't, then it wasn't real love to begin with. So, keep your head held high and hope for good things to happen because you deserve them. Jeannie

Of course we'll have to meet up someday! I was only kidding about the beating you up part...you know I'm way too wimpy for that!!