Update From Me!
 

Hi Everyone!

yes, I know, I'm slack- I haven't posted here in ages! So I thought I'd update you on how things are.

For those that don't know me- hello! I'm 29, been with my hubby for 11 years, had rsd for 6.5 of those. I have four kids aged 9, 7, 5 and 1 (she turned one yesterday!) My rsd is in my right arm and right leg (including foot, shoulder, hand etc)

We moved interstate in January, back up north of Sydney where its warmer than Melbourne and I can actually leave the house most of the year, lol. I'm with a GREAT pain team at a hospital about 40mins away. I'm on the list for another ketamine infusion. My last one (3rd one) didn't work and my liver mucked up, but it could have been due to the fact I'd had a c/section only 8 weeks before and had heaps of complications, resulting in 7 weeks of double dose antibiotics and hospital visits. So its possible the ketamine on top of all that was just too much for my system. It's also possible that the ketamine just didn't work because thats how life can be sometimes! Either way, my Dr has agreed that its worth trying again and hoping for the best.

In the meantime, I was put on the Norspan Patch. I had a 10mg patch on for a week at a time. The pain relief is great, I'm able to be up with my kids and living almost normally. But the itchiness drove me insane! :mad: As soon as I'd rub it (didn't want to scratch it) it would start feeling itchy again. It was like that 24/7. I tried putting up with it. I tried taking phenergan to stop the itching. And I tried applying cortisone cream a few hours before putting the patch on, but neither really helped- they took the itching down to once every few minutes, but who can live like that? I'll be needing a padded cell if I keep going like that! :o lol I gave it six weeks, that's long enough to know its not right for me!

So I'm hoping the pain clinic can give me the medication in a different form- seeing as it was really helpful for pain relief and giving me my life back to a certain extent. I took my patch off two nights ago, so was in a bit of pain today, but I'm guessing the worst will hit tomorrow (as it takes three days to leave your system) and then I'll be watching a LOT of tv in bed! :(

My Pain clinic are really focused on multi-disciplinary techniques to help with rsd, and they're very up to date on all the latest findings etc, so I'm very lucky there.

The kids are all great, they are so different to each other, and growing up so quickly. Bailey was asking me what high school she'll go to- she's in grade four, will be in grade five after Christmas- slow down Bailey! I've attached a picture of Hannah, on her first birthday yesterday.

This year has been my worst yet with my health, and its been a very long, slow, depressing and frustrating year for me, but it seems like Hannah's first year has zoomed past! She says a few words now, has been walking since nine months, and is such a funny bunny! She'll grab my sock and run off with it, laughing. Then she'll stop and smile at me, then turn and run again, squeeling as she goes! She's a terror, but the best kind! :p And she makes all of this worth it!

x Kate

nice to meet ya! Joan

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 :D

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!

:hug:

Hi Kate,
 

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 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 :hug:

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! :Tip-Hat: :Tip-Hat:

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

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. :p

x Kate