Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-01-2009, 05:06 PM #1
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Hi everyone,

Just thought i'd drop you a line to let you know the latest in the saga of my college course.

We expected a decision today but as we'd heard nothing, mum phoned my school to ask what was happening. Last night they recieved a series of questions from the course providers asking the schools opinion on how they feel I will cope with the 50 days of placements I have to do over the next 2 years. It is felt that the placements may be too much for me to handle at the moment and it was causing a concern as to whether or not I would be accepted onto the course.

I thought we'd already got this straightened out when I went on the selection interview. I've already explained to them that I don't have a crystal ball and I cannot tell how things will pan out for me in the future but that I am commited enough to the course to work around any problems I might encounter to make sure I get the qualification that will act as a stepping stone to my future carer.

The school were going to report that i've had considerable breaks in attendence due to flares and PT appts even though mum pointed out that these breaks were down to the school not being wheelchair friendly and later on me having to attend the 5 weeks PT in London.

Mum also pointed out that the disability discrimination act here in the UK states that I have to have the same oppertunities as other young people who have expressed an interest in the course and that the placements have to be found regardless of the persons ability.

The course providers rang mum back this afternoon to state that academically theres no problem with being accepted onto the course but when they'd run my situation by the employees who provide the placements, all but one of them refused to accept me for health and safety reasons as they said that I could pose a risk to their clients and to a lesser degree, their clients may cause a flare to happen should they become anxious or violent.

We are now stuck with having to decide whether to continue and try and find our own placements or to take the lesser qualification but as this still requires 10 days of placement, thats probably going to be a problem too.

The DDA Act here in the UK states that regardless of ability a placement must be provided for anyone wanting to do the course so it seems more like it is too much trouble for the course providers to provide companies to take me than me not being fit to complete those placements.

I think the flare to my arm really frightened them.

Another girl wanted to go on the course as the same condition as me which she didn't declare and it looks like she will be accepted with no problems. Obviously honesty is not always the best policy!!!!!

I'm just so angry about the whole situation!! I really wanted to prove that I can do something even though I have RSD but it just feels like everything I try and do just backfires on me! Hopefully we will be able to get things sorted soon and the teachers will come up with something to help me - I don't think they are that happy to be honest about me going on the course though.

We are considering taking me out of mainstream school also now and for me to just attend the special school that I go to as things are just way too stressful there and my "friends" just take off at break and leave me on my own! I've discussed it with the teachers at the school centre and they are going to try and sort something out. I've tried going back to school but don't think it is working out and is just making me even more frustrated!

Does anyone have any ideas on what to do/say about the course? I'm not sure what to do really! I really want to do it but also want to do the full placements, not just a few!

Thanks for the support!
Alison
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Old 05-01-2009, 06:21 PM #2
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Dear Ali,

Stress is bad for us, so try to relax as much as you can. It sounds like you have a lot on your plate. You are so smart - the academics of your college courses will be interesting and fun. Good luck working out the rest of the details. Our lives are full of challenges. You and your mother sound like an awesome team.

Keep you chin up!
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Old 05-01-2009, 06:49 PM #3
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Hi Alison,

I can't offer much advice on your college options. As I'm not familiar with higher education in the UK.

I can tell you based on what I read in your postings. You are brave and wise beyound your years. Getting started in college can be very stressful without the challenges of RSD. You have perservered up to this point and you will no doubt continue that path.
It seems your mother is very supportive of you. I'm sure she will help you over the college hurdle as well.

Try not to get to worked up it's not good for your pain.
Take care
Sherrie
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Old 05-02-2009, 01:01 AM #4
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I admire your courage and determination !

Have you tried contacting a lawyer who specializes in disability discrimination ?
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Old 05-02-2009, 07:26 AM #5
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Aw sweetie,

I'm so sorry they are giving you a hard time about the placement. If it is something you really want to do then go for it. If the law states that you are entitled to go, then try to get in. Just remember that stress is bad for you, and you don't want a flair. Of course, if you can get thru this part without a flair, then there might be a good chance that you can get thru the rest without a flair. Hang in there, I know whatever happens will be the right choice.

Hugs
Mary
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Old 05-02-2009, 08:27 AM #6
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I am sorry that this is not an easy process. I have a few thoughts but am from the US so am clueless on some of the rules and regulations. How would you go about finding your own placements? Is there a way you could ask to talk to these employees who denied you or that were concerned? Maybe if you can sit down and talk to them yourself it may give you and them both more to go on. My concern is there statement of others hurting you by accident. This is scary enough for a person without rsd but with rsd and how sensitive we are it is a really big risk. I know everyone with this does things different but I fear getting brushed at the grocery store so that would be a huge concern. As for a different school now and friend concerns I am sorry again. I know that friends my age at 30 are clueless on how to handle my condition in support form. When in reality all I want is a check in or a simple call. Please hang in there and see what a strong and amazing young lady you are. I hope things look up soon
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Old 05-02-2009, 09:57 AM #7
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Quote:
Originally Posted by ali12 View Post
The course providers rang mum back this afternoon to state that academically theres no problem with being accepted onto the course but when they'd run my situation by the employees who provide the placements, all but one of them refused to accept me for health and safety reasons as they said that I could pose a risk to their clients and to a lesser degree, their clients may cause a flare to happen should they become anxious or violent.
It's always best to not mention health related issues, because no-one will otherwise be at all willing to take you on, regardless of the good intentions of any law or disability act. That's the real world for you, they really rather quickly act as if you have the plague and you should be shunned if you are prepared to level with them. If you are in a wheelchair, or have to use one, then there's no way of hiding this from them, so you already are in a major disadvantaged position.

I'd try and fight this, with all the means that are within your power. I am not familiar with how the system works in the UK, but I'm sure there's something you can do to fight them?
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 05-02-2009, 11:58 AM #8
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Quote:
Originally Posted by CRPSbe View Post
It's always best to not mention health related issues, because no-one will otherwise be at all willing to take you on, regardless of the good intentions of any law or disability act. That's the real world for you, they really rather quickly act as if you have the plague and you should be shunned if you are prepared to level with them. If you are in a wheelchair, or have to use one, then there's no way of hiding this from them, so you already are in a major disadvantaged position.

I'd try and fight this, with all the means that are within your power. I am not familiar with how the system works in the UK, but I'm sure there's something you can do to fight them?
Thanks but I had to declare my illness as it is the law over here in the UK, also there was no way I could hide it as they could tell that my walking was bad and my arm was swelt to 3 times it's normal size and severely bruised.

I also have a statement which disabled children have to try and get additional help and support in school so the teachers already knew about my RSD and had told the college course tutors.

In the UK, if you have a disability, tutors MUST do their upmost to try and get you onto the course or a job otherwise it is seen as discrimination so i'm not sure why they haven't done that in my case.

Theres no way I could "hide" my RSD so I had no choice but to inform them about it.

Hopefully we will be able to get things straightened out soon. I'm just so sick of having to fight everything because of my RSD.
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Old 05-02-2009, 12:04 PM #9
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Quote:
Originally Posted by daniella View Post
I am sorry that this is not an easy process. I have a few thoughts but am from the US so am clueless on some of the rules and regulations. How would you go about finding your own placements? Is there a way you could ask to talk to these employees who denied you or that were concerned? Maybe if you can sit down and talk to them yourself it may give you and them both more to go on. My concern is there statement of others hurting you by accident. This is scary enough for a person without rsd but with rsd and how sensitive we are it is a really big risk. I know everyone with this does things different but I fear getting brushed at the grocery store so that would be a huge concern. As for a different school now and friend concerns I am sorry again. I know that friends my age at 30 are clueless on how to handle my condition in support form. When in reality all I want is a check in or a simple call. Please hang in there and see what a strong and amazing young lady you are. I hope things look up soon
Thank you Daniella for your support and ideas - it means a lot!!!!

My mum asked the college tutor whether it would be possible for me to get my own placements seeing as I have contact within the hospital and seeing as my mum works for the youth club and they said that that should be OK but I would probably have the same problems and that they might not want me to do any placements because of my RSD. My mum has got in touch with my childrens hospital though to see whether it would be a possibility so I am hoping that they will get back to us soon - I have an appt with them Tuesday and Wednesday anyhow so will discuss things with them then.

When my mum told the tutor about me getting my own placements, she had the cheek to ask my mum if she could get them more placements also so that they wouldn't have to find their own!! I couldn't believe it when she said that!

My mum has to call them back on Tuesday and is going to ask whether it would be possible for me to go and meet up with the employees that deal with the placements to see whether they would be able to accept me. There is a similar course that I could do with less placements that the tutor suggested but there are no places left on it.

Thank you again for the support and i'll keep you all updated!!
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Old 05-02-2009, 12:12 PM #10
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Don't give up hope, Ali! You'll find something. You have to, and I'm sure you won't give up looking. Just don't let it discourage you that it all happens this way.

I just have to say, your mom is great and she's doing so much for you!
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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