Hi Kate! My name is Desi. So nice to meet you! I just want to say, I give you so much credit to having RSD and raising 5 children! You sound like such a "Terriffic" mommy. And what you wrote at the end of your letter, stating, "It's all worth it" well, that really brought tears to my eyes. I will be praying for you. Love, Desi P.S. Your baby is "BEAUTIFUL"!

Hi Kate!

I was a wonderin how you were doing. Sorry to hear it is the worst year for you too. Seems like each year is worse for me, and I keep thinking it just cant get any worse lol.

I hope the treatment works, and also am glad you have good doctors. I believe the piece of mind you get from just knkowing that helps a lot.

Been thinking about making a trip to the land down under when the disabilty goes through. Just have to knock my wife out to get her on the plane

Hard to believe the little one is 1 already!!! Where does the time go? I know it is like that though because my youngest just turned 21, and it seems like only yesterday he was tugging on my pants leg lol.

Cherish every moment!

it's good to see an oldie pop their heads in every once in a while. I hope that you can stick around.

I am always amazed to see the people on here with young kids that deal with RSD and can still take care of a family. I think though having all of those great kids around help to keep a person's mind off of what they are going through at times. I have my grandson's 2 to 3 times a week and they keep me busy. When I first got sick though it was very hard to take care of them but I had Bill to help me through those times.

Like you, I have some very good Drs. If it weren't for my PCP I wouldn't be alive today and I also believe he kept Bill with me about 15 years longer then he would have been otherwise. I also have other Drs. that have been there for me for years. I think that does keep you a lot less stressed as Allen said.

Your baby is so cute. I am more hooked on babies today then I was when I could have them, and kids. I had 5 boys here Sunday night and tonight I have 3. My two always have company.

I'm glad that you found your way back and I hope that you hang around. I do know what you mean about the worst year, after losing Bill in Nov. I have started going down hill again even more. It's just hard to get back up onece you get down.

Hang in there and take care,

Ada

Hi Cake, nice to meet you Hope to see more of you around here, looks like your friends missed you.

Hi there, Kate from Oz!

(I know you're a secret Brit, lol) Your children sound wonderful, the little one is really cute; yes, how time flies, I bet many of us remember back when she was just a notional twinkle in the eye....

I really hope the next the next infusion works for you, you deserve it! How long is it now that you had the first one - seems to me like 2 or 3 years?

So good to hear from you (Sydney, love it, sparkly city.)
all the best

Hi Kate,

I have read some of your posts here, so I kinda know who you are, and I wanted to say hi! I think it's wonderful that you have continued having children through the RSD! I am proud of you! Wow. And taking care of children whilst having RSD is hard... Wow!

Your little one is terribly cute, and I am praying that all goes well for you in the upcoming days!

Sorry not post again, the morning after that first post I got a phonecall from the hospital saying to be there for my infusion by lunchtime! So that was very short notice to organise everything!

(This was my fourth infusion- first one was Dec 2004. )

I came back home today, and am really exhausted. It went really well. Good news is that my liver is doing perfectly, without any raised levels. I'm really happy about this because it means it won't restrict the possibility of future infusions. Chris (my pain dr) did add in clonidine from day 3 onwards, which REALLY made me out of it. One nurse said I was as high as a kite, but I pointed out that I was at kite level on Saturday, now I was up with the airplanes! So I was pretty spacy most of the day, only a little more normal in the hour before I took the clonidine again! But it seemed to help with my previous infusions so we thought there was no harm in adding to it this time.

As far as pain levels go- I have no pain really in my arm, foot or hand. I have moderate pain in my leg, from ankle to knee, but its stayed at below a 5/10 since Monday, which is SO great. In the week or two before going in, when I had stopped using the patch, I was using both crutches all the time, lots of breakthrough medications (ie short acting ones for flareups) and averaged at 7-9/10 all the time. And my foot was the worst, constantly high. So to have that pain in my foot and toes gone, and my leg just at an aching/slightly burning level, is really good. And just having the option of further ketamine infusions open is fantastic- I was worried this may be my last try.

So we'll just take it one day at a time now and see how it goes. I have new breakthrough meds if I need them, and scripts for my next medication trial (methadone) for when this pain relief ends.

x Kate