[Sandel]

Hi there... missin you bud.. you ok?

Sandra

[LMJunior]

Hi Sandra, I have been wondering the same thing that we haven't heard from frogga for a long time. The last time I saw your post you weren't doing good. I sure hope things improve for you Frogga. Please know I will keep you in my prayers. Take Care

Laraine

[ali12]

Hi there,
Just to let you know I have been talking to Frogga (Rosie) on the cell phone and on MSN. She says that she was doing OK, but then she over did things. so she's back to the start again.
Take care
Love
Alison

[LMJunior]

Hi Allison,
Thank you for replying to my post. I'm glad you heard from frogga,but sorry she is not feeling well. If you get a chance please let her know that Laraine is thinking of her. How are you doing? I was thinking of something today when I was 13 I developed my RSD in my arms, and my PT recommended that I use play-Doh for my fingers. It did really help a lot. Also I played video games too that was helpful. I hope you find some of these suggestions helpful to you. I will pray that you will feel better soon. Take Care

Laraine

[Sandel]

Hi Ali.. I want to second Laraine's post thank you for letting us know.
Be well my young friend,
Sandra

[ali12]

LMJunior,
Many thanks for your reply. I will tell Frogga that you are thinking of her when I speak to her next.
My leg is still really painful. My arm hurts a bit too, it feels like the RSD is flaring up again because my arm is bruised and painful etc. I am hoping to start online tuition soon, I don't know when though.
I will get some play - doh and see if it helps my arm. I like playing on my nintendo wii, I find that it helps get some strength back in my arm.
How are you? I hope you are OK.
Take care

[LMJunior]

Hi Allison,
Thank you for replying to my post. I hope your leg and arm feels better soon. I developed my RSD when I was 13 so I missed a lot of school too. I was in 8th grade and was home tutored when my RSD was so bad. I could not write at all so my doctor said have the PT help her and she has to go back to school in 3 weeks. The PT helped a lot,so I was able to go to school for all major subjects. It was good to get back,but it was a struggle. I hope your tutoring on line works out soon for you. I sure hope you get relief soon. Take Care Allison

Lmjunior

[frogga]

Hiya

how are you all? sorry I have not been around - RSD has been pretty awful and that's made life pretty tough!!!! Spent a couple of weeks in bed and eas doing abit better, sitting up for ages and barely passing out (ok I was quite alot but only once a week or so not nearly as much as "normal") then overdid things horribly, ended up back in bed and the RSD has just been horrible since then! but oh well! back at uni now - James (boyfriend) came down to mine to come and pick me up and take me back there which was sweet and has just adjusted to the RSD so well - better than me most of the time!!! lol! So now back at uni in the middle of exam week - agh! so much work and not really up for it! Discovered I'm having vagus venous ventral (or something like that) faints which apparently make it much more dramatic than the "normal" faints or something - apparently they're similar to patients that are coming out of surgery or something - I wasn't really well when it was explained so only remember 50% of what they were going on about - oops!! lol. No worries! But hey, got 2 exams left and aload of course work and then free!! Baclofen pump has been put off thanks to the NHS wonderful selection (ok failure) of resources... so still waiting to try that. James has proved to be a really awesome bloke, he's pretty cool anyway but he is just great with the RSD. had a really bad time last week, you know when we are crawling the walls with pain? I was screaming into pillows, all my limbs were contorting, hands twisting, clawing myself, biting myself etc for a couple of days and he just stayed through it all - refused to let anyone but Ben into my room and just stayed... played with my meds with Ben to try and make the pain abit more bearable (ok, or me care slightly less about it!) but I was impressed that just stayed and didn't mind that I was totally out of it with pain and bit/ scratched him as well. He's also started doing some of my care so we can go out together which is really lovely - it's nice being able to do stuff together without needing carers with me all the time.

So... RSD is pretty much the same as ever.. still hard to deal with, still annoying and still leading to me spending far too long blacked out or in agony but, I'm back at uni with James, Ben and the rest and dreading exams - bring on next week! (actually don't, I've been too unwell to revise!).

How are you all doing? Will try and check in more over the next week or so just been almost totally unable to get to a computer for the last 6 weeks or so..

Much love!!!

Frogga xxxxx

[ali12]

Hi Frogga,
Ben sounds like such a loving, caring man. It's nice that he understands what RSD is, I am sure he will look after you the best he can.
I am so sorry that things have been rough for you - I hope you are feeling better now.
I haven't been doing that well, the RSD in my arm keeps flaring up, it's bruised and painful at the moment, which is really annoying. My leg is still the same, I am starting HBOT in early February. I am hoping to go to GOSH (Great Ormand Stree Hospital, London) soon, my PM doctors done me a referal, which is good news.
Me and my mom had a meeting with my social worker, education psychologist and teacher yesterday. It didn't go that well to be honest, social services can't look after me during school hours so my mom might have to pack work in. My mom's currently working at work in the morning (my dad looks after me until he goes to work) and then my mom comes home at 1pm when my dad goes to work, but my moms got to start work full time soon so I don't know what we will have to do.
My educational psychologist is lovely, she says that if I need anything I can always e-mail her. My teachers want me to start going out with my friends more, when and if I can. I am starting home tuition and online tuition soon, apparently a man is going to contact my mom soon.

I hope to hear from you soon, if you need anything just email me or PM me
Thanks

[frogga]

Hi Ali,

LOL Ben is the old guy (well, he's my best mate...) James is the guy I'm dating - lol I know! he's great.

Sorry school etc isn't going well - is there a way you can go to a school which has a unit for students with disabilities? the more isolated you get the worse depression can get and also the harder it is to interact with mates and, well, you know all that stuff! Then you could do mornings. Several of my RSD friends who are in school go to places where they are in class as much as they can be and can then go to a resource room/ area where they can rest or just go to if the pain gets too much. They also get physiotherapy and stuff every day there and help with desensitisation etc and the schools are inclusive - so you take normal lessons with everyone and stuff but just if it gets too much you can take time out. It is hard not to get isolated with this condition and your teacher is right in many ways.

You don't want carers if you can help it - they can be an utter nightmare! and Social services here won't provide care for your situation because they will argue that you could be in school - (as you are not bed bound) - (I know, they don't understand pain etc) - or that your parents should have to look after you.

It sounds like looking for a new school might be the way ahead. Just a thought.

Glad to hear about HBOT - sounds good, as does GOSH - they have a really good team there and I think everyone I know there has made pretty awesome progress.

I screwed up an exam today... wasn't really well enough to sit it but went anyway... managed to lose my vision in it and was right on the edge of passing out and spoke utter rubbish for 3 hours (turns out bg levels were also low that also didn't help! - ooops!). So now revising for next one.. but it's all over on Saturday. Wahey.

Take care
Love

Frogga