Comments on: Pain, pain, go away

By: Will the universe please give me a break? @ Terrible Palsy

Will the universe please give me a break? @ Terrible Palsy — Tue, 15 Sep 2009 09:42:35 +0000

[...] as alluded to in the post pain, pain, go away, Moo is on some heavy drugs. One of those drugs is clonidine. As Moo was discharged from [...]

By: Gina

Gina — Mon, 14 Sep 2009 07:41:29 +0000

Jac, you did great. That management of pain is a bugger – we’ve been there. Unfortunately it takes not getting on top of the pain (and subsequently working that out) to actually get it sorted properly. And honestly, i don’t think it is possible to understand this until you have been to the tough and painful place you have been. you did the best you could with the info you were given… when you knew better, you took action – there is nothing more you could have done. Hang in there, happy groggy recovery times for Moo. LOL on the ‘nonsense’ Master C was spouting.
G&Mac

By: gem

gem — Sun, 13 Sep 2009 18:29:08 +0000

I feel like I am an AA meeting but I do think it is important to disclose from the start that I am a GP,in case anyone reads me and finds out later. Many as aspects of your post are upsetting because I can imagine, even though I work on the other side of the world, that whole scenario unfolding. The comment that gets to me me most though is where you tell us how much you love Moo. Please, please never feel that you have to defend your position in that regard. It is so obvious that your whole family love every single bit of Moo! I hope this hospital stay brings him forwards in leaps and bounds.
Gem

By: Emma

Emma — Sun, 13 Sep 2009 12:21:14 +0000

Oh Jacqui. I’m torn between sharing a story so you know you aren’t the only one who finds things different to expected or just sending hugs. But you sound like you need the (((hugs))) more than anything. Glad Moo is improving, hope home is something that happens again soon. Emma. p.s. I have a new blog, I put the link in.

By: Alison

Alison — Sat, 12 Sep 2009 21:38:49 +0000

I am so sorry to hear Moo has had such a hard time (and you too). I’m glad the pain specialist listened to you and acted on what you said and that Moo is now feeling better. I LOVE his comment about not wanting to listen to his brother’s nonsense! I hope he can come home soon.

By: Dianne

Dianne — Sat, 12 Sep 2009 07:58:08 +0000

Jacqui,
Not a ramble. A very valid post. I don’t think you should beat yourself up for trusting that the medical staff were giving you the very best advice in the first place – it’s natural to trust them – they’re the ones with the training and expertise after all. You’ve done pretty much what I think I would do i- that is, take their advice until it becomes quite apparent that the advice is just not that great, and then take action. Sending big hugs your way and hope that Moo can be home soon – pain free and gaining more movement and strength.
xo

By: Cheryl

Cheryl — Sat, 12 Sep 2009 03:07:05 +0000

Oh, and I don’t think it’s a ramble at all

By: bron

bron — Sat, 12 Sep 2009 02:54:43 +0000

Jac, I love reading your ramblings! I really hope that Moo is feeling better and that you and the whole family may get a little break soon from it ALL. Thinking of you often. Bron and family xo

By: Cheryl

Cheryl — Sat, 12 Sep 2009 01:37:46 +0000

I had 6 surgeries for my CP between when I was 5 and when I was 17. I was always given valium afterwards and either morphine or an epidural to go with it. Then at home STRONG oral pain meds with the valium. Some of the surgeries went horribly, some went ok, none went exactly as expected.

One thing we learned eventually was that surgeons intentionally don’t tell you everything that is going to happen afterwards because then you wouldn’t do it. When I was 13 I was told I wouldn’t be able to walk in 5 years, so I did this gigantic 2 part surgery. The recovery took a year and a half. There was ALOT of pain and ALOT of things he “forgot” to tell us, but I’m 24 and I’m walking.

The other thing we learned after that surgery is that orthos don’t know a thing about pain management. I was lucky to have started seeing a physiatrist (physical med and rehab) 6mos before who specializes in disabilities like this. They DO know about this stuff. She told my mom to stop calling the ortho and wrote me scripts for a crap load of meds. THANK GOD!

The other thing she warned us about ahead of time was that for every day I was in the cast not moving it takes 3 days of moving to gain back that strength. So my 2 months in a cast not able to sit or waghtt bare at all resulted in 6 months (8 months total) of working HARD to get my energy back VERY slowly. It was so slow in fact that there were days I broke down in tears, but I got through it because what other choice did I have?

You’ll get through it too now that moo is comfy. Things WILL start to get better now. I remember those screams, but it’s like child birth I imagine (don’t have kids). I’d still do it again.