MessyStuff:ALifeWithRSD

First College Placement Finished!

2009-12-04T13:14:00.000-08:00

Just under 2 weeks ago, I started my first ever College placement. As most of you know, I am studying a Course in Health and Social Care and as part of that course, you have to do 50 days of placements throughout 2 years.

This Placement was in a Care Homes Day Centre for elderly people with a wide range of different problems. I was extremely nervous about starting at first as i'd never done anything like this before but I survived and got on OK!

All of the staff at the Care Home have been great. They were all made aware about my RSD so were understanding if I couldn't do anything (though most things I could as it was only talking with the residents, pushing wheelchairs etc - nothing too physical because of my age).

The Day Centre had a wide variety of activities happening every day. I had to go for 6 hours Monday through to Friday so that I could get a taste of work life. It was hard because of my RSD as I got tired really easily but I got through it and am happy to say, I completed all of my 10 days.

The time seems to have gone really quick. It only seems like two minutes since I started at the Care Home. I have really been kept busy having to communicate with the residents, help serve dinners and set tables, help them participate in crafting activities etc. It's been really fun and I think I could definitley see myself in the Caring Profession.

I've developed a lot of skills during the 10 days I have been on placement and it's given me a real insight into work life. I've really improved confidence wise and am able to talk to people that I don't really know now which I wouldn't do before unless I was absolutely forced to.

My Placement Superviser has been really good. I met up with her today and she went through my placement booklet with me and commented on how well i've done. I was given a lovely box of chocolates from her and all of the residents when I left and a card which was really nice! All of the residents semt to like having a younger person in as they could talk about their grandchildren and things with me. They had lots of interesting things to say and said they were all sad to see me go with brought tears to my eyes!

Were talking about trying to get my second placement in a Child Care setting so i'm looking forward to that. Child Care is something i'm interested in so hopefully i'll enjoy it! My next placement isn't until April so at least we have plenty of time to organize it!

I need to catch up with all of my school work that i've missed now! I have been given some to do at home for college and school so will probably be busy with that over the weekend as it's back to college on Monday! Were hoping to have a meeting with school soon as the school centre I am at at the moment, doesn't seem to be giving me that much work so were going to discuss me going back to mainstream school or at least giving it another try. I'm not sure how that will work at the moment or whether i'll be able to cope with it but I guess we wont know until we give it a try. I'm just afraid that if I stay at the place i'm at now, I wont get all of the grades I need to go onto the higher level college course. Hopefully my school will be understanding and put me in a class with the few of my old friends that actually talk to me!

I'll keep you all posted! Thanks for the support!

Anniversary of Grandad's Death

2009-11-22T13:16:00.000-08:00

Today, the 22nd November is a year to the day that my grandad passed away. Who'd have known a year ago that it would be the last time that we would all see my grandad, that he would be taken away from us just in a split second?

They always say that time heals things like this but I don't really believe that that is the case - it just gives you more time to think of all the things you are missing out on and that's what I have been doing today. It hurts SO much to know that I can't go to my nanans and see my grandads face again, go shopping with him. I guess it's the little things that I miss the most.

It seems so unfair that all of the good people are always taken away whilst other nasty people are still walking the Earth. My grandad was the best, yes we had our differences but he always cheered me up and that helped a lot. I still don't get to this day why my grandad was takwen away from us - the only conclusion that I can come up with is that Heaven was looking for an Hero and that was my grandad. He was my hero and always will be.

I'd give anything just to see his face one last time to let him know how much I loved him. It hurts a lot knowing that I can't see him and also knowing that he'll not be able to watch me grow up, have children have my own one day and be the loving grandfather to them that he was to me.

I start my College Placements tomorrow. I'm working in a Care Home for 2 weeks with old people. I'm really looking forward to it - i'm just glad it wasn't today as I don't think i'd have been able to cope. Every little thing has made me upset. I'm hoping that the RSD will 'behave' for a change during the placements. I'm going to try my hardest and try and make my grandad as proud as he made me.

Love you forever and always grandad. Not a day goes by where I don't think about you and wish you were here with us. You were the best and no one could ever replace you. I know you don't like seeing me sad but it's hard to cope with all this at times! Forever in our hearts!!!

Please Can I Have One???!!!? ...

2009-10-19T12:20:00.000-07:00

Today as part of College, we went to a Care Home. Ever since then, my mum has been laughing at me as I seriously fell in love with all of the old people there LOL! They were all SO cute and seriously, I could have took them home with me if I was allowed to! The other girls that went to the Care Home were the same as me too! The teachers on my College Course are always saying that you should never become too attached to the patients but I bet it is really hard when they are so cute and loving!

The trip to the Care Home was really interesting. One of the carers showed us round. It was split up into 3 areas; there was a resident section where all of the old people went and lived / went to stay whilst their carers got a break etc, another part which was more specialised and was for elderly patients with Alzeihmers and Demention and another place for people between the ages of 18 and 60 with all sorts of different illnesses, drug and addiction problems etc.

We learnt a lot from the visit and they showed us all of the hoists that are used to lift patients, how they work etc. The whole idea of the Care Home visit was to prepare us for our first placement and give us an insight into what to expect and after today, I am really looking forward to my first placement!

Towards the end of the visit, we were asked to play Bingo with all of the residents which was really fun! I had to work with a lady who was deaf and mark all of the numbers down for her whenever they came out. She was so kind and sweet, always smiling and asking me to have the prizes as we won!

It was amazing to see how grateful the patients in the Care Home were when we went to see them! When we had to go, they kept thanking us for coming and said they really enjoyed themselves! It was SO nice being able to give something back to them and see the smiles on their faces!

I'm really looking forward to my first Placement which starts on the 23rd November for 2 weeks. It's not in the same place as we went today but it is in a Care Home so it should be really good!

My legs hurting a lot now! I think I did a little too much today and am paying for it. I have School in the morning tomorrow but then I can come back, relax and finish my assignment that has to be in on Wednesday for Child Development. I was supposed to have a Physio appt last week but my Physiotherapist is ill with Swine Flu so had to cancel ... it seems to be going round like wild fire at the moment! My College tutor was really ill with it a few weeks ago but is better now thankfully!

I want to thank you all for the continued support - it's really appreciated :-)!!

Update

2009-10-05T06:04:00.000-07:00

I haven't updated my Blog for quite a long time so please accept my sincere apologies for that - things have been pretty hectic here lately so I haven't been able to get on the computer much!!

I started College about 3 weeks ago and am really enjoying it! It seems so strange saying that i'm at College as most people don't start until they are 16 years old and i'm only 14 lol!

I'm studying Society, Health and Development which is really interesting. We look at all 4 sectors of Health and Social Care such as Health, Child Care, Criminal Justice and Social Care so it's really interesting as you get a taste of all of the areas that you can go into, not just one!

I currently attend College 3 half days a week. At the moment, on a Monday, we are doing Communication, on a Wednesday afternoon we are doing Child Care and on a Thursday afternoon, we are doing Criminal Justice. I have learnt quite a lot since being on the Course. It is a LOT of hard work however, I don't think anyone really anticipated how hard it was going to be! Just today in fact, my tutor was saying that she thinks the course is a lot harder than most others and thinks it should be targeted more towards 16 year olds. She thinks that we will sail through it though as we are all commited to it.

I had my Placement induction day last week which was interesting. I found out that my first placement will start on the 23rd November and will be in a Care Home where I will have to look after old people etc. The placements last 10 days (2 school weeks) and we have to do 50 days of placements in all the 4 sectors to pass the course during the 2 years. Seeing as I am doing my first placement in a care home, all of the other kids will be doing it in another area and then we will swap so that it is fair.

I'm looking forward to my first placement, it's something that i'm interested in and I have heard that it's supposed to be quite interesting. It's worked out well as the Care Home is near where my mum works so she can take me there and pick me up as the College doesn't provide transport.

I've made a lot of great friends on the Course who have really helped me. They all know about my RSD and don't judge me because of it ... I guess it's easier for them to understand as they all want to go into the health care professions when they are older.

We are going on a trip to an Hospice next month so the course is quite hands on. Obviously, we wont be able to see all of the terminally ill patients because of our age but we will get to meet some of the patients that come in for day treatment etc. We are also helping to hold a Coffee Morning for the kids of terminally ill patients at the College sometime next month (we are arranging a day for that next week) so that should be fun!

When i'm not at College, I still attend the School centre so I am pretty busy every day now. It's been hard trying to get up for School and things but I guess it's something I have to do in order to succeed.

My mum has paid for me to do a Science course at home to take some of the extra burden off me however, I still have to go to School to do Science lessons once a week for 2 hours. I started going back to School last week and was terrified ... I hadn't seen any of the kids for nearly 2 years and I was so nervous as to what they'd say etc! I'm still not keen on going to School once a week as it is really stressful but I need to do it to pass my College Course.

The School has arranged for a lady to come and sit with me during my Science lessons. She is really nice but sometimes, I just wish she would leave me on my own to do my lessons and talk to people instead of treating me like a baby! I don't always like attention being drawn towards my ilness ... I just want to try and be as 'normal' as I can!! With her there, it sometimes feels as though it is drawing more attention towards my illness. I think she has to be there though as the School was scared incase I spilled anything during the lessons etc.

My great uncle sadly passed away last week. He had been ill for quite a long time now and deteriated further. I wanted to go to the funeral but my great grandma was being awkward saying that I shouldn't go and that it wasn't a place for kids to go ... she's really old fashioned when it comes to things like that! My aunty is quite upset so we have told her that we will go and spend some time with her to keep her company.

My mum and I have been asked to go to the House of Commons in London on the 27th November to speak to all of the MPs and maybe even Gordon Brown about Schools not supporting kids with a chronic illness. My Dr knew that I have had tons of problems with my education and school not understanding so thought it would be great for us to go and talk to them and hopefully, it will change things for the better! I'm really looking forward to going and really hope people will finally see sense and start improving schools ... it's bad enough dealing with RSD let alone schools being awkward too!

My RSD has been flaring up quite a bit. I think that the extra pressures of school / college and the weather changes haven't been helping. I'm finding that on a weekend, all I tend to do is collapse and spend most of the days in bed ... it's sort of like my body can't take any more by that point and shuts down! I have my Physio appointment next week, I haven't been for quite a while so i'm hoping they will be able to suggest somethings that might help.

Apologizes again for 'abandoning' my Blog! I will try and update it more regulary! I hope you are all doing well!

Happy Birthday Grandad!

2009-08-18T13:21:00.000-07:00

Tomorrow, the 19th August, would have been my grandads Birthday. He sadly passed away last year after a major heart attack. It's SO hard knowing that i'll not be able to celebrate his Birthday with him. I'd give anything to see his face one last time and let him know how much I loved him. He was the best grandad anyone could ever wish for; yes we had our differences and he didn't understand my ilness but he always cheered me up when I was feeling down and I knew he cared deeply about me and for that, I could never, ever thank him enough.

It was my nanans Birthday today so I went to see her. My nanan and grandads Birthday are a day apart and they were the same age for a day!

We took my nanan some flowers and whilst we were visiting her, my cousion, aunty, uncle and cousions kids came. I hadn't seen them in a while so it was nice to see them. They brought some flowers for my grandads Birthday wish we went and put in the garden. When my grandad died, my nanan scattered his ashes in the garden and we got a rose bush that we named after him. His favourite place was in the garden so it made sense to scatter his ashes there.

It was SO hard laying the flowers. I think it hit us all that this would be his first Birthday that we wouldn't be able to celebrate together. We always did something on my grandads Birthday so it was so hard knowing that we wouldn't be able to this year.

Whilst my nanan and I were sat in the house, some of her cards kept falling down. It sort of felt as though my grandad was letting us know that he was still here with us, wishing my nanan a happy Birthday and letting us know that he was still looking over us. I never believed in ghosts or spirits before my grandad died but I do now - I know it sounds strange but I truly believe that a few times after my grandad died, I have 'seen' him and my nanan and dad have said the same thing too.

My nanan said she had a nice Birthday but it was obvious that she was upset, as we all were. I really wish I could spend my grandads Birthday with him and let him know how much I cared about him. I'd give anything to see his face one last time.

I decided to dedicate this blog post to my grandad. I miss him SO much but deep down, I think I know that even though he has gone physically unfortunately, he will always be looking down on us and watching out for us. Memories keep loved ones close to our hearts and well, they certainly did in my grandads case!

"If tears could build a staircase
And memories a lane,
I'd walk right up to Heaven
And bring you home again'

Happy Birthday Grandad, I miss you so much and would do anything to see your face one last time!

R.I.P - Gone but never Forgotten!

To all of my blog readers, please take the time today to let your loved ones know how much you care about them. So many things went unsaid when my grandad died and I always promised myself that i'd never let the same thing happen again. Lifes too short and you must let people know how much you love them as you never know whats around the corner!!

Love you grandad! Always in my heart. I was so proud to be able to call you my grandad and I scincerly hope I can make you half as proud of me as you did me! xxx

For Everyday I play, I have to set aside a day to pay...

2009-08-06T12:52:00.001-07:00

I was reminded of this today. I really hate how whenever you try and do something with RSD, you always pay for it the next day.

It was my mums Birthday yesterday so we went to the theme park, Alton Towers. One of my friends and her mum came with us too which was really nice.

The theme park is really big and although we took lots of breaks, my leg REALLY hurt. Because I have RSD, we get a disabled pass which means that we can get on the rides straight away which is easier as at least that way, we don't have to wait around for ages to get on them.

We got on quite a few rides. They hurt my leg quite a lot as they threw us around but I didn't want to ruin it for my friend and mum so decided to go on them. My friends mum has just had back surgery so couldn't go on a lot of the rides so my mum went and sat with her most of the day to keep her company.

I really enjoyed yesterday but have really been paying for it today!!! I have been in bed all day and only got in the bath tub and that took all of the energy out of me. I really hate that no matter how much you try and not let RSD rule your life, it always seems to. It's SO hard trying to plan a trip out somewhere as I always know that i'm going to pay for it the next day if I overdo things. We took it pretty easy yesterday but I guess RSD has a mind of it's own!! It really gets to me at times when I see my friends out and about having fun and i'm sat in the house because of RSD - I just wish I could be a normal, carefree teenager!!!

Heres some of the pictures of my friend, Jess and I on some of the rides.

Me and Jess on the Runaway Mine Train. It's only a pretty small ride for young kids but it lasts quite a while so was good for a sit down!!

Jess and I on Rita: Queen of Speed. I love this ride and so did Jess! It goes from 0 to 60mph in 2.5 seconds!!

Me and Jess on Air. This ride is so strange - one minute you are sat upright and the next you know, you are laid flat on your stomach!! When it goes upside down, you are laid on your back - so cool!!! I'm not sure what happened to my fingers on this pic - it looks like i've got an additional finger lol!!

I'm off to go and lay down now as it's getting pretty late over here and i'm tired and hurting. I'm hoping that if I can get a good nights sleep, i'll feel better tomorrow!

Update And A Sorry !!

2009-07-31T06:51:00.000-07:00

I'm sorry that I haven't updated my blog in quite a while. I haven't been feeling too well lately and have been pretty busy trying to sort things out with school. I feel so bad for neglecting my blog but hope you will all understand!

It's the Summer holidays over here in the UK at the moment and i'm SO glad that they have finally arrived! It's SO nice to be able to relax and not have to worry about getting up at 7am every morning to get ready for school when i'm not feeling too good! We get 7 weeks off and will start school again about the 9th September.

It's hard to believe that when I go back to school, I will also be going to college to undertake the Health and Social Care Course!!

We had a meeting a few weeks back with my school, the school centre and college to see what I will be doing from September and I have been stressing about it ever since! My School are trying to force me into going back to school despite telling them god knows how many times that I cannot cope with all of the walking involved and that my so-called 'friends' haven't been in touch with me for nearly 2 years now!

My teachers keep saying that I HAVE to go back to do my Science lessons and Citizenship otherwise I will fail all of my exams so they have sort of got us over a barrel! I don't want to go back to school as that would risk making my health even worse again (everytime I go back I end up in some flare) but on the other hand, I really want to pass my exams!

The School has decided that I can go to the School centre still but I MUST go back for Science, Citizenship, RE and some other lessons so that will mean that from September, I will be all over the place!

On a Monday morning, I will be at college and then at school in the afternoon.
Tuesdays, I will be at the school centre and then school.
Wednesday, I will be at school in the morning and then college
Thursday, I will be at the school centre in the morning and then college
Fridays, I will be at the school centre and then school.

I have been really scared about going back to school. I just don't want to go back and risk making my health worse and my 'friends' have clearly demenstrated that they could care less about me! My teachers sort of forced me into going back - they told me that I could say if that was OK and that they would ask for my input but they never did and i'm not the sort of person that will say if i'm not happy with something - guess it comes from my Type A personality!

My mum is currently trying to enroll me into a Science course at home so hopefully that way, I wont have to worry about going back to school and can do that at home. The college course is going to be stressful enough so I don't need to worry about having to worry about anything else!!!

We have a meeting next week with my college tutors about the placements to see how they can best accomadate me so hopefully that will go well! They want to try and make sure that I am as safe as possible during the placements so that I don't risk making my RSD any worse. Some of the employees have been a bit worried about giving me placements because of my RSD but my mum works in childrens services so it worked out well in the end as she was able to find me some placements :-) !!

I had a Physio appointment yesterday. It was the first one I have had in a while as my Physios felt I needed a break to see if that would help any. It didn't unfortunately and my knee has still been creaking a lot.

My Physio's did some gentle exercises with me as my knee still wont move much and they were really painful! They are still wanting to look into Botox as a last resort but i'm not sure if I am willing to take the risk of making things worse, especially seeing as though the nerve block and ingrown toenail removal made me worse. We were told that if we decided to give the botox a shot, they would send me to Great Ormond Street Hospital in the UK as that is the leading childrens hospital and they have a specialist botox clinic so should know what they are doing.

It's such an hard decision to make, I really want the Dystonia to go away but on the other hand, I don't want to risk making my RSD worse or ending up being in a wheelchair again! I guess it's a matter of weighing up the pro's and con's and then making an informed decision.

I don't have an appointment to see my Physio's until the end of August now as they still feel that I need a break from physio to see if that would help any. They basically don't want to do too much work on me until the inflammation on my knee settles down which could take quite a while unfortunately.

My mum and I are off to Spain at the end of August so i'm really looking forward to that! We are going to see my grandad for a week so i'm hoping that the break will do us both some good! He has a pool also so hopefully, I might be able to do some pool work whilst there too!

Thanks for reading and I apologize again for not posting a lot lately - I'll make sure I post more soon!!

Physio Appointment

2009-06-28T10:30:00.000-07:00

I had an appointment with my Physio's on Wednesday which was the first appointment i'd had in over a month. I usually go every week but my Physio's father-in-law had suddenly passed away so she was off on berevement leave for quite some time.

I have been having a pretty rough time of it lately. I have been dealing with LOTS of pain in my knee, especially when I bend it and walk up and down stairs etc.

We told the Physio's about the knee pain and they took a good look at my knee. We had also started noticing some 'creaking' in my knee. It is really hard to describe how it feels but it literally feels as though someone has hidden some frogs in my knee cap as it croaks - weird, I know!

My Physio's felt my knee and couldn't believe the croaking I was getting in my knee! I think they were pretty fascinated with it to be honest as I don't think they had seen anything quite like it before.

They tried to get me to do some exercises to see how much movement I have in my knee but it was extremely painful. I was only told to bend my knee a little bit but got some pretty bad pain in it and then got a really bad spasm in my hip which was so bad that I started crying. The Physio's could obviously tell that I was in a lot of pain so decided to leave the session at that and did some talking with me and my mum.

They seem to think that I have some inflammation in my knee and that is why it creaks, even when I don't move it. The Neuro Physio thinks that I might have a condition called Femoral Patella which is something wrong with the Patella near the knee cap but I would need to see an Orthopaedic Doctor to get it diagnosed.

I have been told to increase my pain medications to try and help me through this flare as it's obvious that the pain is really getting to me as I have been pretty Depressed lately. I guess it is just getting to me that I can't do most things that any normal teenager can.

I also have an appointment to see my GP tomorrow to see if she has any input on the knee pain and see if she can do anything to help. I have to go and see my Physio's again on Wednesday and they are going to take another look at me then and then try and do something if things aren't any better. They did want to admit me into hospital a few weeks ago to do some inpatient physio with me but can't do it at the moment due to staffing issues and they also want to see if my knee settles down any before doing anything to it.

I'm hoping that we will get some answers from either my GP or Physio's sometime soon. The pain in my knee has really been limiting what I can and can't do and I have missed lots of school because of it.

It's a busy week for us this week. I have to go to college on Thursday to see about the Health and Social Care Course and then we are heading down to London on Friday to see Take That which should be fun!

Just want to thank everyone again for all of the help and support and for taking the time to read my blog - I really appreciate it!

Britney Spears Live In Manchester!!!

2009-06-18T01:54:00.000-07:00

I have been in a pretty bad flare for a few weeks now but yesterday, me and my mum went to Manchester which is about an hour and a half away from where we live to see Britney Spears, Live In Concert!!!!

We have had the tickets for a few months now and have really been looking forward to going to see her. One of my mums work collegues went to see her in London though and she wasn't impressed by her. My mum was going to sell the tickets after what her friend told her but we decided that we would go and see for ourselves what she was like!!!

Ciara was supposed to have been the support act for Britney however for some reason, she wasn't there!!! Me and my mum were really looking forward to seeing her as we really like her! There were quite a few other people complaining also as no one had told them that she wouldn't be there, there was just a sign on entry stating that she wasn't performing that night.

I'm not sure if any of you know Ciara but she is quite popular and has done some songs with Justin Timberlake, Enrique Inglesias etc. I was pretty upset about not getting to see her but decided that we came to see Britney more than anyone else and would probably still have a good time!!!!

Seeing as Ciara wasn't performing they had some circus acts come and perform lots of circus routines that left the audience stunned!!! I honestly don't know how they did some of the acts that they did - they must be VERY talented people!!!!

After the circus act had finished, the audience went wild as music blasted through the stereos and Britney was introduced to the stage by Prez Hilton who had put a video together all about the pop princess which was pretty strange but funky at the same time!!!!

Britney certainly put on a show. She was fantastic to watch live and I am SOO glad we didn't sell the tickets!!!! All of her dance routines were great and the show had been excellently choreographed!!!

As most people know, Britney doesn't perform live; she mimes. It would be pretty much impossible to sing AND dance like she does at the same time! Even though she mimed though, it was still good and everyone had a great time singing and dancing to all of the music!!!!

Britney had lots of dancers with her; both male and female. I must admit that some of the male dancers were rather lush with their six packs and they certainly made all of the women and teenage girls happy!!! All of the women in the room screamed as they came to the stage and danced away!!!!

After about every second song, Britney descended below the stage to quickly get changed into another outfit. Me and my mum were laughing as they had spent a lot of money on the concert but yet couldn't seem to afford to buy her any clothes lol !! She was in skimpy numbers or bra's and knickers throughout most of the concert but I guess that is pretty for you!!

Whilst Britney was away getting changed, the circus act came back on to do some quick circus routines ago which were excellent! It was really good how they did it as no one was bored in the audience whilst waiting for her to get changed!

Britney didn't do many of her old songs, i'm not sure why. The only old ones she really did were 'Hit Me Baby One More Time', 'Toxic' and a few others. It was OK though as I knew most of her songs and even the ones I didn't were good due to all of the dance routines that she did!

As she sang 'Everytime', I got a bit upset as the song reminded me about my grandad who passed away last November. It wasn't Britney's fault obviously, I guess some songs just make me pretty emotional as I think about the lyrics as I can relate to them and I am still grieving a bit.

Whilst she sang Everytime, she was suspended above the stage in the air on a really nice chair in lovely fancy dress outfits!! It was really good how they choreographed it and made it fit in with the song!!!

I am really glad that we didn't sell the tickets as she was fantastic!! I am paying for going now due to all of the noise aggrivating my leg but it was definitiely work it! Me and my mum have already said that we would go and see her again on her next tour if/when she does one!!!

What was strange about the concert was as I couldn't walk far, me and my mum were sat in the disabled seating area. I was sat next to a women who had had a knee operation a few months ago and still could hardly walk. As she was coming into the arena, she fell and jarred her knee and it became extremely painful so she had to get her husband to go and get her wheelchair from the car and ask the arena doctor to get her a bandage. Throughout the concert though, I kept noticing that like me, whenever there was a vibration, she would jump in pain and pull a funny face. I just kept thinking to myself that what she was doing semt all too familiar and I could totally relate to what she was going through. I was actually going to ask her if she had heard of RSD or been diagnosed with it but didn't get chance and I didn't want her to think I was being noisy!! It was just strange though how she kept jumping with the vibrations. She told the arena doctor that she was seeing a doctor for her problems so hopefully she will get sorted soon!!

Heres a few pictures from the concer for those of you that are interested!! My mum took them with the digital camera as we were allowed to take pictures!!

The Acrobats performing. The Acrobatic somehow managed to put the frame on his nose and balance out whilst spinning round and it never moved - amazing!!!!

The acrobats performing again. The acrobatic in the air somehow managed to do a roly-poly onto the tightrope/wire without falling over and injuring herself!!!!

Britney Spears taking to the stage and dancing to her first song!!!

Britney Singing and Dancing with the Acrobatics Performing in the Air at the same time!

Britney Dancing with the Acrobats!!

Britney Dancing with the Male Dancers!!

Britney Dancing in a Cage that she was locked in!!

Britney Dancing in the Cage!

Britney Dancing with her Dancers

Britney Pole Dancing in a very Small Number!!

Britney was put into the above 'box' and somehow managed to get out and go to the other side of the stage without any of the audience seeing her!!

Britney With the Male Dancers trying to get her onto the Motorbike!

Britney Performing with all of the Dancers. I am officialy obsessed with the 2 male dancers - they are soo cute and fit!

Britney Dancing Again

Britney in a very nice, sparkly fancy dress outfit!

Britney performing 'Everytime' in the air suspended about the stage!!

Britney with all of her Dancers!!

Britney Dancing with the Male Dancers!!

Britney Performing with the Male Dancer

Britney at the end of the show with all of her Dancers!

Britney saying Bye to all of the audience at the end of the show!!!

Some Days Chicken, Some Days Feathers...

2009-06-15T04:24:00.000-07:00

I am getting so fed up with being sick and tired all the time...

I guess today is just a bad day, to put it mildly. I have been dealing with a nasty pain flare now for about a month and there doesn't seem to be any end in sight at the moment. I am having some weird symptoms in my knee that can be very frustrating and painful. Whenever I bend my knee, I get excrutiating pain in the knee cap area that literally brings tears to my eyes. I have also noticed that my knee clicks a lot when I move it and it feels like my whole knee is really unstable. Me and my mum went out yesterday for the day and my knee gave way about 6 times which is making it very hard to walk as I am losing my balance quite a lot.

All of the knee issues started after my last Physio session about a month ago. My Physio's have been using a splint to try and correct my leg and foot position and in the last session, they got me walking in it but my leg kept giving way and my knee was rotating to the side even more. I remember complaining of really bad knee pain and my mum also said to my Physio's that my knee was twisting.

My mum called my physios last week to keep them informed on how I was doing and they said that the splint probably hasn't caused all of the problems I am havin. It seems to be too much of a coinscidence though that the pain and other symptoms started right after my last physio session!!

We were adviced to go and see my GP to get some anti-inflammitaries and to rule out any other possibilities, especially seeing as though the pain isn't what you usually get with RSD. My mum called this morning and we can't get an appointment until the 29th June which is over 2 weeks away!! I can't get in to see my Physio's until next Wednesday either so I guess this is something I am going to try and cope with until then...

I just want and need some relief from all of this!!!! I am off School again today as I just don't feel well and know there is no way I would be able to go and concentrate on my studies in this state!! I HATE missing School all the time and need to do something to stop me from being off school so much as from September, there is no way I can keep missing this much amount of school seeing as though I will be starting College and doing placements etc. I am lucky at the moment that the school centre understands my RSD and will allow me time off but i'm sure that will all be different when I start college!!

Life can really suck sometimes...

Preparing for the Future...

2009-06-04T06:37:00.000-07:00

Today at the school centre, me and my teacher had a very long chat about what I want out of life and what carer I want etc.

I told her that I wanted a really good job and really wanted to be either a Psychologist or a Physiotherapist as I am really interested in that sort of stuff, especially now that I have RSD. I had always wanted to be a vet but now that I have RSD, I decided that I wanted to try and do something in the health field and work with people that are going through a similar thing to me.

On a Thursday at School, all of the kids do Drama for an hour and half in the morning. I never really liked Drama anyhow but seeing as though I got accepted onto the Health and Social Care Course at College from September, I will have to drop Drama and just focus on Maths, English, Science and ICT (Computers).

Myself and my teacher decided that doing Drama semt a bit pointless seeing as though I will be dropping it anytime soon so have decided to have some one-on-one time and focus on getting my Maths and English up to scratch.

In a few years, I have got my BIG important tests called GCSE's which I HAVE to pass in order to pass the Health and Social Care Course and get a good job in later life.

We have been doing lots of preperation for the exams and I have been given Romeo and Juliet to watch at home over the weekend.

From now on, every Thursday, I will work with my teachers on my own and do some of my GCSE work. It is hoped that maybe this way, it will be less stressful. I have missed out on a lot of school work due to my RSD so somehow need to try and catch up real fast.

It's quite scary to think that in less than 3 months, I will be starting a course at college and in 2 years time, I will be doing my all important exams!! Time seems to have really flown and I just hope that I will be able to concentrate enough in order to pass!

I'm off on a mini weekend break with my nanan tonight. We have a caravan (an home away from home sort of thing) at the seaside so we will be going there while Sunday as I don't have school tomorrow. It will be nice to get away for a bit and spend some quality time with my nanan and give myself a break also!

Tag, I'm It!!!

2009-05-30T14:52:00.000-07:00

I found this little quiz online and thought it would be kinda fun to post it in my Blog and allow people to find out more about me...

I'm sorry that I have been so bad at posting in my Blog - things have been hectic here but I do hope to post an update more soon!!

what is your current obsession?

I am curently obsessed with Ugg Boots! It is Summer over here in the UK but I still live in them as they are probably the only shoes I can wear because of my RSD.

I am also obsessed with Diversity from Britains Got Talent! They won in the final today against Susan Boyle and are AMAZING!!! They are excellent dancers and do everything in sync and it looks great!

What is your weirdest obsession?

Hmm, I don't think I really have a weird obsession although I always tend to ask my mum if I smell lol !! I know it sounds strange but ever since I developed RSD, I seem to sweat a lot more and therefore think I am going to smell even though my mum always reassures me I don't!!

Starbucks or Peets?

I'm not sure what Peet's is as I don't think it is in the UK so would have to say Starbucks. I love their signiture hot chocolate and smoothies - they're to die for!!!

What's for dinner?

I've just had my dinner and had a lamb kebab and chips which was delicious!

What would you eat for your last meal?

I would probably have a Margharita Pizza and chocolate cake for desert as I love both of them!!

What was the last thing you bought?

I can't really remember as it was that long ago but it would probably have been a top that I have wanted for ages. It was on sale so I decided to go and get it!

What are you listening to right now?

I'm not really listening to everything, other than the television lol!

What is your favourite flavour ice cream?

I have lots of favourites but would probably have to say strawberry. Especially the strawberry ones with bits in - they're delicious!!

What do you think of the person(s) that tagged you?

I tagged myself so can't really comment lol !

If you could go anywhere in the World for the next hour, where would you go?

I would probably go to Australia as I have always wanted to go there and it looks beautiful on the tv. One of my close friends has just moved there recently with her mum also and I really miss her so it would be cool to meet up and spend some time together!!

Which language do you want to learn?

I would love to learn Spanish as my grandad and his wife live over there so we tend to go quite a bit. I know some Spanish, but would love to learn more!

What is your favourite quote right now?

My favourite quote at the moment is 'To the World you may be one person, but to one person you may be the World'. I think it's really lovely and is so true.

What is your favourite piece of clothing in your own wardbrobe?

I have a Juicy Couture dress that I love! I need to lose a bit of weight to fit into it but it is really nice and perfect for the summer!!

What is your dream job?

I would love to be either a Psychologist or a Physical Therapist. I have learnt a lot since developing RSD so would like to try and help other people going through the same thing as me. I am starting an Health and Social Care Course at College soon so hopefully, that dream will be able to become a reality one day!!

What is your worst habit?

I don't think I really have a bad habit lol

If you had £100, what would you spend it on right now?

I would probably buy an all new wardrobe lol! I have lost some weight so some of my clothes don't fit! I don't really want to get any clothes right now though in case I lose any more weight any time soon lol!

Do you admire anyones style?

I love Miley Cyrus' style. I think she is so pretty and natural, not like some of the celebs that you see caked in make-up and plastic surgery!!

Describe your style?

I tend to chose clothes that are comfortable but also fashionable. I am pretty girly but not too over the top and am always focusing on my hair!

What are you going to do after this?

I'll probably watch the television for a bit and then go to sleep if I can as it's getting late!

What are your favourite movies?

I have lots of movies that I like but my favourites are probably Dirty Dancing, Grease, 27 Dresses, High School Musical etc - I love all the chic flicks!

What is your favourite fruit?

I love strawberies and grapes!

What inspires you?

I'm not sure really. Probably people that are going through a lot but still focus on the positives in their life. They help me keep strong and realise that things could always be worse.

Your favourite book?

I don't really have a favourite book as I can't read them that much due to my RSD (concentrate = just about gone !)!

Do you collect something?

No, not any more really. When I was younger, I used to collect Yu-Gio cards with my friends.

What is your favourite smell?

I love the smell of melted chocolate - yummy :-) !!

What are you most proud of?

I am proud of myself for undergoing an intense Physical Therapy program. It was absolute hell but did help a bit!!

What are five beauty products you couldn't live without?

- Mascara
- Blusher
- Eye Shadow
- Conceler
- Lip gloss

Cats or dogs?

Doggies!

OK, i'm breaking the rules and am only tagging 3 people! If anyone else would like tagging, please ask and i'll tag you!

http://lisamoon-phases.blogspot.com/ - Lisa Moon
http://alessea.blogspot.com/2009/05/why-are-you-trying-so-hard-to-fit-in.html - Felicia
http://messystuffalifewithms.blogspot.com/2009/05/wipeout.html - Webble

(You don't have to do this if you don't want to - it is entirely up to you!!)

here are the rules:
1. respond and rework; answer the question on your blog, replace one question that you dislike with a question of your invention, add more one question of your own.
2. tag eight other people

College Course

2009-05-16T07:19:00.000-07:00

First let me say a huge 'Thank You' to everyone that took the time to reply to my last blog entry and for supporting me!! I really appreciate people taking the time to comment and I don't know what I would do without all of the support and encouragement sometimes so, 'Thank You'!!

As I mentioned in my last blog entry, I went to college for an interview for the Health and Social Care Course that I want to do.

We heard back from the college a few weeks ago. They called my mum and asked whether or not she thought I would be able to cope with the placements on the course because of my RSD etc.

My mum told the college tutors that we had already spoke about how stressful it would be but that I really wanted to do the course and I was prepared to give it my all. The tutors were still really concerned about my RSD though and said that they were having a huge difficulty trying to find suitable placements for me because everyone was afraid that I would fall and injury myself or a patient. They said that academically, I would pass with flying colours but because of my RSD, they were concerned that I wouldn't be able to cope with the full course.

The tutors told my mum to speak to me and then to call them back asap the next day.

Me and my mum had a huge talk about the course and I didn't really know what to do. I really wanted to do the course but I felt as though the course providers didn't want me to do it because of my RSD. I am one of those sorts of people that wants to please everybody and doesn't want to make anyone feel like they have to do something for me - guess it's my Type 'A' personality!!!!

Eventually though, I told my mum that I wasn't going to let some teacher get in the way of my future carer and told her that I really wanted to do the course, even though I knew it would be a lot of hard work. My mum had also been on the college website and it says that they MUST provide suitable placements for anyone that is disabled as it is the law.

My mum called the tutors back and informed them of my decision and they still kept going on about how it would be hard work and that they don't know if i'd be able to cope etc. We told them though that I knew all of that but that it was something I wanted to do and was willing to give it my all.

My mum asked the tutors whether I had a place on the course and they kept trying to avoid giving her an answer. Eventually though, they said that I could have a place but that we need to be aware that it might be hard trying to find placements because of my RSD. My mum works for the Youth Club anyhow so she has contact with lots of different services if all else fails.

I'm just so relieved that I got a place on the course!! It was a lot of hard work but definitiely worth it in the end! I know that it will be hard work but it's something that I want to do and feel will be worth it in the end if I am able to complete the whole 2 years.

Me and my mum have to go to a meeting with the school on Monday to meet with the college tutors to discuss what might help me with the course etc. I'm glad that they are listening to me but at the sime time, I don't want them to be too over the top and single me out as someone that is really disabled.

I also have to go for a 'tester day' for the course in July. We will then find out more about the course and what it entails, when the placements will be etc.

Hopefully i'll be able to cope with all of the course and get my qualifications at the end of it. I really want to prove that I CAN do something even though I have RSD and prove to the ones that didn't think I could do it that they were wrong!!!!

I'm not going to let RSD get in the way of my life even though it is extremely hard at times. I am someday going to have to learn how to 'live' with it as it could be with me for the rest of my life unfortunately so I may as well start now!!

My Crazy Life: Update

2009-04-28T04:58:00.000-07:00

First of all, i'm sorry that I haven't updated my blog in so long. Things have been so hectic here and I will try and fill you in on all the details now the best I can!

Things haven't been going too well for me lately. On Easter Sunday, I fell in the kitchen on the concrete flooring as my leg gave way. As I fell, I somehow managed to knock my right arm and it started to swell and bruise a few hours later. I wasn't going to tell my mum about it as I hoped that it would get better but it didn't and eventually I broke down in tears of pain and had to tell her.

She was shocked at how bad my arm was. It had only been a few hours since the injury and my arm had swollen up to become 3 times bigger than the other arm and was starting to turn black and blue. She wanted me to go straight to the hospital but I refused and told her that there was nothing they would be able to do.

The next day, my arm still wasn't any better but I decided to go to my grandma's as I hadn't seen her in over a week. She took one look at my arm and insisted that I went straight to the hospital. She doesn't know much about RSD so I think it was a bit of a shock to her as to how bad it was.

I really didn't want to go to the hospital but agreed to go and get my arm examined to rule out any other possibilities other than the RSD. The nurse in A&E was lovely and she took the time to listen to us about RSD and then decided to xray my wrist due to how bad it was.

When the X-Ray results came back, the nurse came to see us and said that it looked as though I had an hairline fracture over my radius. She was going to put my arm in a cast but my mum explained about the RSD and how you shouldn't cast an RSD limb so she decided to just put it in a really thick bandage. The nurse made an appointment for me to go to the fracture clinic where I would see an Orthopaedic Doctor to see what they wanted to do.

The next day, my mum took me to the fracture clinic and we saw the Orthopaedic Doctor there. She was really nice and was really shocked at how bad my arm looked. She called my Pain Management Doctor to come and take a look and he too couldn't believe how bad it was and said that it was the worse RSD flare up he has ever seen!! My Doctor decided to increase my Ketamine to try and get me through this flare and my mum also told him that I was having problems with my left shoulder. He took a look at it and diagnosed me with another spread of the RSD as he could see how sweaty my arm was and that it was extremely red.

My Doctor was concerned about my arm so told me to go back to the hospital a week later where they would re-xray my arm and decide what to do.

My Physio's had suggested trying botox for the dystonia in my left leg so my mum mentioned it to my PM Doctor. He said that he had got a letter from them and spoken to other doctors about it and basically, no one is willing to take the risk due to my medical history. I had a nerve block when I was first diagnosed and that put me in a wheelchair for 13 months and then a ring block and that created Myoclonic spasms/jerks so every doctor that he has spoken to isn't willing to try it as they fear that it could make things worse. He is going to speak to some other doctors though and see if they will be willing to do it and I have an appointment with my Neurologist on Monday so will discuss it with him then.

I'm really not sure what to make out about the Botox situation. I think we need to try something else as a last resort as nothing else has worked but I don't know whether I am prepared to take the risk of making things worse either. I guess it is one of those situations where you have to weigh up the pro's and con's.

Anyhow, a week after I saw the doctor in the fracture clinic, I returned back to the hospital for yet another xray and to see the Orthopaedic Doctor again. The Doctor re-xrayed my arm and said that she couldn't see any fractures this time!!!! I really didn't know what to think when she said that. I think I was just in shock and denial as I realised it was another RSD flare. Don't get me wrong, I didn't want my arm to be broken but at least with a fracture, it would be better within 4-6 weeks, with RSD there are no guarantees.

The Orthopaedic Doctor explained that it was the worse RSD flare up they have ever seen and that it appears as though my nerves have been causing my blood vessels to constrict and therefore blood has been leaking out - a bit like internal bleeding I suppose.

I expected the doctor to lose interest once she found out it wasn't broken but she didn't and said that she was glad I went to the fracture clinic as it teaches them more about RSD. I was so glad when she said that as most doctors don't want to even consider learning about RSD.

The Orthopaedic Dr told me to rest my arm as much as possible in a bandage but also try and move my fingers and elevate it to get rid of the swelling. I also have to have weekly Physio on it to try and get things under conttol more.

I think I am still in a bit of denial about the RSD flare. I just feel so sad sometimes as I know it's RSD and that it isn't going to be a quick fix. My family still think that it is broken and that the doctors have misdiagnosed it which is realy stressful at times as they don't understand what RSD is.

I will come back to edit my post in a bit - need to go and rest for a little bit as my arms hurting a lot!!!

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Last week, I had a 2 day selection event at a football club near where I live about a college course that I am hoping to do.

As some of you know, I am currently taking my Year 9 Options which is where you basically have to choose which subjects you want to do in the last 2 years of school. You have to do Maths, English, Science and ICT (computers) but can then choose any other subjects you want to do.

The meeting at the football club was about the Health and Social Care Course that I have applied for and was really interesting. We did lots of team building exercises which enabled us to get to know others that have applied for the course and may be working with us if we get a place. We also got a chance to meet up with the teachers who are extremely nice and caring.

The teachers showed us a video about the course that we have applied for. It is spilt up into 5 sectors so that it covers 5 different topics. One sector is in Health, another is in Child Care, the third one is in Criminal Justice, another in Admin work at hospitals etc and the last one in supporting people with behaivoural issues or that are autistic etc. If we get accepted onto the course, we have to do 50 hours of Placements covering all of the 5 different sectors so you can work in an old people home, youth club etc etc. All of the children on the course in the video said that it was very good and that they have learnt a lot from it.

On the last day of the course, we had to go for interviews with the teachers. The teachers were really nice and asked me lots of questions like why have I applied for this course, what do I hope to get from it etc. I told them that I suffer from a chronic pain condition and that I have learnt a lot about illnesses and what to help other people that are going through similar things to me. The teachers were really interested in learning about RSD which I thought was nice!

The teachers said that they had no problems with me getting onto the course academically but that they wanted me to consider whether the 50 hours of placements would be too much. They asked me to go and have a think about it and then called me back to tell them my decision. I told them that I know that it will be hard work and stressful but that it is something that I want to do and feel will be worth it in the end. The teachers were happy with my decision and said that was fine as long as I felt comfortable and wanted to do it.

When I spoke to the school, they told me to apply for the course that I went to college for and also another one which is exactly the same but with 10 hours placements instead of 50 so at least that way, if I don't get accepted onto the one I want, I have something to fall back on. If I don't get accepted onto both courses, I don't know what I will do as there isn't that many subjects at school that I am interested in that I could take in my Options really.

We should find out by the end of the week if I get a place on the course! I really hope I do as it is something I want to do and the teachers seem as though they will be able to work round me! There are 15 places on the course and 22 people have applied. The course lasts 2 years and if I get accepted, I will have to go to college 3 days a week.

After we had our interviews at college, we did more team building exercises and the football players from our local football team came in! It was really nice to meet them as I support the team! They came in and presented us with certificates and also signed some programs and things for us!

Me and my mum have been away for the weekend on a mini break. We have been to the South of England to see my grandad and his wife, Carol. It was really nice as they live in Spain which is a 3 hour plane journey so I don't really see them that much. They took us to lots of interesting places including a zoo called Monkey World which was really good. It had all sorts of monkies and the zoo keepers rescue them from neglect and try and nurse them back into health! We also went for lots of meals to lovely restraunts which was nice and we got to meet up with my grandads wife's parents for the first time ever! I'm paying for the trip now but it was definitiely worth it!

So, that is my crazy update! Hopefully things will start picking up for me soon! Please keep your fingers crossed that I will get accepted onto the course and I will keep you all updated!!!

The ABC's Of Me (And Then Some)

2009-04-28T04:38:00.000-07:00

A - Age: 14 years old

B - Bed size: Double Size Bed - that way, I have plenty of room for my RSD leg!!!

C - Chore you hate: Cleaning my chinchilla and hamsters cages out as they always smell!

D - Dog's name: Jack

E - Essential start your day item: Hmm, probably a shower and coffee to try and wake me up!

F - Favorite color: Lilac and Pink - i'm a real girly girl when it comes to that!

G - Gold or Silver: Gold but I like both :-)

H - Height: Hmm, i'm not sure but over 5ft

I - Instruments you play(ed): I don't really play any although I did play a recorder when I was younger but only for fun!

J - Job title: I am currently in school at the moment but hope to be a Psychologist when I am older as I have learnt a lot since I developed RSD and want to try and help others! I am also hoping to start a college course from September on Health and Social Care

K - Kid(s): Lol, i'm waaaay too young to have kids!!! I do have my 'fur babies' though who I pretend are my children lol!!

L - Living arrangements: I live in a 3 bedroom house in the UK with my parents and pets (springer spaniel, chameleon, chinchilla, hamster, fish and African Grey Parrot)

M - Mom's name: Andrea although I call her mum!

N - Nicknames: I don't really have a nickname - people usually just call me Ali.

O - Overnight hospital stay other than birth: I have stayed in the hospital LOTS of times overnight - too many to remember!!

P - Pet Peeve: Bad drivers, insensitive people etc

Q - Quote from a movie: "I carried a watermelon"! Dirty Dancing

R - Right or left handed: I'm right handed but really must try to write left handed also now that my RSD is flaring up in my arm all the time!! Maybe that way, at least if one arm is bad, i'll have the other to use still lol!

S - Siblings: I don't have any siblings and like it that way!

T - Time you wake up: When I am at school, I have to wake up at around 6.45am. On a none school day though, it just depends and I usually lay in for a bit as I don't sleep a lot!!

U- Underwear: I wear it!

V - Vegetable you dislike: Coliflower is gross!

W - Ways you run late: I am always running late now that I have RSD as it takes me forever to wake up!! My mum has learnt now to get me up really early though so that gives me time to wake up and shower and not be too late!

X-rays you've had: I have had an x-ray of my radius and ulna, total left leg, nose and teeth. I have also had an MRI scan.

Y - Yummy food you make: I don't really make food but like baking cookies and buns when I get chance!

Z - Zoo favorite: I love White Tigers!!

Website That I Created For Kids In Pain!!!!

2009-04-09T01:55:00.000-07:00

I haven't updated my blog for a short period of time as things have been pretty busy here but thought I would make a post about a website that I created for kids in pain as hopefully it will help some people!!

Since I have been diagnosed with RSD, I had always wanted to create a website especially for children and young people dealing with a chronic pain disorder! Throughout the 2 years that I have had RSD, I have had such a hard time trying to find teenagers to talk to that are going through a similar situation to me and I know many other young people have also.

This past weekend, I decided that I would have a go at setting the site up and it is now all up and running with it's own domain name!!! We were just going to create the site for young people with RSD but I know that there aren't that many so my mum came up with the idea to have it for kids dealing with any chronic pain condition and their families!!

The website has lots of information on all sorts of chronic pain conditions such as RSD, Fibromyalgia, Arthritis etc and even has it's very own forum where you can go and talk to others who are in a similar situation to yourself!!!

I hope that some of you will join the forum and try and get the word out about it so that hopefully, other teens wont have to deal with a chronic pain condition on their own!!

The link to the website is:

www.kidsinpain.co.uk

You will also find a section on there with the forum which you are more than welcome to join should you wish!!

The site still needs a lot of work doing to it but it is up and running and that is the main thing!

Please feel free to check it out and if you have any questions or feedback, please let me know!!

Physio Appointment and Decisions!!!!

2009-04-02T03:53:00.000-07:00

First of all let me say a huge thank you to everyone that replied to my last post about the second anniversary of developing RSD!!! It means a lot when I recieve posts from others and I am SO lucky to have you all as my friends!! Thank you for taking the time out to read my blog - I truly appreciate it!!!

Last week, I had an appointment with my Physiotherapists. I hadn't seen them for a while due to my grandad passing away, Christmas break, school and mums work etc so it was nice to catch up with them!!!

I asked the Physio's to look at my left arm as I have been having quite a lot of pain in it and it goes red a lot sometimes and is very tender in some areas. The Physio's asked me to change so that they could examine my arm and they asked what I did. I told them that I fell on some ice going out to the taxi and knocked my arm. They got me to do lots of movements and said that there didn't appear to be any fractures there and that they suspect that it is a spread of the RSD. They didn't so it in so many words but said that it was a 'Pain Response' and that I need to see my Pain Management Doctor to diagnose and treat it.

I'm so upset that I might be dealing with another spread as that is the last thing I need right now!!!! Hopefully, we will be able to "manage" it though and if it is caught soon enough, it will go into some form of remission. I have been given some exercises to do and I try and do them on a daily basis - they are really painful but I know that it is either use it or lose it and I don't want to risk things getting any worse!!!!

After the Physio's examined my arm and shoulder, they went and checked my foot out. I have pretty bad Dystonia in my leg as well as the RSD and the first thing the physio said when she saw my leg was, "It looks worse than when I last saw you"!!

My Physio examined my leg and tried her darn hardest to move it but it wouldn't move even a tiny bit!!!!! It took them half an hour and a lot of strength to get my leg to move a little bit!!! The Physio said that they need to try and re-think their options now as it is obvious that Physio alone isn't helping in my case. I have been having weekly Physio (and sometimes more than that) for 2 years now and it hasn't helped with the Dystonia at all.

The options that the Physio's gave us was to try either Botox, Electrical Stimulation to try and stimulate to muscles into working or casting my leg. The casting has alreaady been mentioned and I wasn't very happy about that at all as I have read so many horror stories and know that you should neve cast an RSD limb anyhow.

The Physio's told us to go home but that they wanted to see me a week later (this week) and that they were going to arrange for me to try and see a Neuro Physio if at all possible as they should have some more ideas as to what might help and what wont.

I went to Physio again yesterday and we met up with the Neuro Physio. She is really nice and friendly and my Physio's told them what they had been working on and how I was responding etc. The Neuro Physio examined my leg and said that I have a pretty severe case of fixed Dystonia and she agreed that they needed to seek other options.

It took the Neuro Physio over 30 minutes to move my leg yesterday so it was pretty obvious that things just aren't getting any better. The Neuro seems to think that I have a 'fatigue' in my muscles and that you basically have to try and tier them out before you can even try and do anything with them.

The Physio's were discussing things whilst we were there and the neuro physio suggested trying a splint with more pressure applied at one side to see if that would try and get my leg back into the correct position. After discussing my case though, they decided that they didn't think it would work as the spasms in my leg are just too strong. They also mentioned casting my leg but thought that would be a bad idea because of the risk of even more muscle wasting and lesions etc - I was pretty relieved that they didn't want to try that as I don't think it is something I would be willing to try really.

The last option available was to try Botox and I think that is probably the route they will decide to go down if anything. The Neuro Physio was really nice and explained how Botox worked so that we were as informed as possible. My mum asked if the botox could make me worse as both of the nerve blocks I have had done did (the first one put me in a wheelchair for 13 months and the second caused really bad myoclonic spasms) and she said that she honestly didn't know but that they would have to be real careful as if they hit the wrong nerve, it could cause more harm than good and that it isn't a decision to take lightly really.

The Physio's are going to discuss the Botox with my Pain Management Doctor and we should hopefully have an answer for when we go to physio again (the end of April). The Physio's said that the Botox would probably make my pain worse in the short term so if they were going to try it, they would suggest doing an epidural or something to try and put any pain flares to an halt.

They also suggested that if we chose to go ahead with the Botox, it would be really useful if I was admitted into hospital a week after I had the procedure done so that they could do some intense physiotherapy with me to try and give me the best chance of regaining any function in my foot. I thought it was a good idea and so did my mum - I would also be allowed home should I wish on a night so at least I wouldn't have to sleep in the hospital.

So now, we are playing the waiting game!!! I really wish that the Physio's could have given us an answer yesterday as to what they were going to do but I know they need to discuss it with my doctor first and give us time to research it at home ourselves. The NHS wont do any procedures also without getting confirmation from all of the doctors involved so I think that is making things a bit more difficult also. Hopefully when we go next, we will have some answers!!!! The Physios also want me to try and go to Physio more often so are going to try and arrange a medicar for me so that my mum doesn't have to go all the time and my nanan could come with me (I think that would probably be helpful as she still doesn't understand RSD!!). They also suggested trying to get Physio at my GPs office but said that we would have to be careful and make sure the Physio knew about RSD and what he/she was doing!!

In more positive news!!: I have started going back to mainstream school on a Friday now. I come home for dinner as the teachers thought it would be too hard on me to stand for such a long period of time. It's hard at times but I seem to be coping OK and my friends seem to be a little better than they were last time - I think the teachers must have had a word with them about that and told them that we weren't happy!!!

Me and my mum are also going to see Dancing on Ice today at an arena near where we live. Dancing on Ice is a TV Program where they take celebs and try and get them to dance on ice like professions but they are doing a tour also!! We have been to see them before and they were really good so i'm looking forward to seeing it again!!

Thanks for reading my blog and I will keep you all updated when I hear anything else from my Physio's!!!!!

2 Year Anniversary of Dealing with This Monster ... RSD!!

2009-03-20T07:18:00.000-07:00

Today is the 2nd year Anniversary of me having RSD. It's hard to believe that it has been 2 years to the day that I fell down those steps and sprained my ankle ... sometimes it feels like a life time again whilst on other days, it feels like just yesterday.

It's hard to believe that all of this could be caused just by falling down about 3 steps. All I did was sprain my ankle and ever since that day, I have been dealing with excrutiating pain and horrible Dystonia's caused by the RSD!!

It's been a pretty tough day for me so far. I am in a pretty huge pain flare at the moment and I don't think the added emotions/stresses of having to deal with my Anniversary are helping that much either. Still, i'm trying to focus on the positives though and realise that I have come quite a long way since I developed RSD. I am no where near better and still deal with pain of an 8 and a half on the pain scale on a daily basis, my leg is still extremely rotated and nothing I or anyone else can do has helped it so far, my limbs still turn blue and I am dealing with a suspected spread of the RSD to my left arm BUT in some respects, I have come a long way!!

This time last year, I couldn't walk and was wheelchair bound as my legs would just shoot out in front of me whenever I tried to walk and I would fall to the ground. My mum and dad had to literally carry me everywhere I went and it made simple tasks extremely difficult. I then went onto the Intense Physiotherapy Program in London and the Physio's there learnt me how to walk again. It was extremely tough but without that program, who knows where I would be today! Yes, I still deal with LOTS of pain on a daily basis and I have to use my wheelchair long distances BUT I can get around the house and school now and for that, I am extremely grateful as some people just aren't so lucky!!

I have learnt a lot since developing RSD and I feel it has made me a stronger person. I have dealt with sooo many emotions and tough times and have felt like giving in more times than enough but I am still here and trying to "cope" and live my life to the best of my ability, even though I have lots of limitations.

Have I fully accpeted that I have RSD?? OMG, no way!! I don't think I will ever be able to fully accept that I have RSD but I have learnt to try and get on with life, even though it is extremely hard sometimes when I cant do things that normal teenagers do. I have learnt not to take everything for granted and I am truly grateful for everything that I can do, despite the limitations that may be involved.

So even though today is tough and upsetting for me, I am trying my darn hardest not to focus on the negatives and to focus on the things that I CAN do!

Here's hoping that the next year will see the end of my battle against RSD and that I will be able to live a normal, pain-free live and do all of the things that I want to do!

Made to Feel Like a Drug Seeker...

2009-03-17T07:22:00.000-07:00

I got a Phone call this afternoon from my mum. She was at work but called me as she was so upset and angry and needed someone to talk to.

We had run out of my medications so my mum went and put the prescription in on Friday as my pain had really spiked and I needed something to try and help. One of the drugs on prescription was Ketamine. As i'm sure some of you already know, it is the only medication that takes my pain down and even then it only takes it to a 6 and a half on the pain scale so I really felt that I needed it as the pain from our Vacation still hasn't settled down that much. I really hate taking it but figured that it is better than being in extra pain.

When my mum put the prescription in, the nurse told her that because it is such a strong drug and what some drug addicts use that she needed to keep the bottle. That was OK other than the fact that there was still a little bit in that could have helped knock the pain down, even if it was just for a little bit.

The nurse told my mum that the prescription wouldn't be available to pick up until today so my mum called the Chemist this morning to see if it was OK for her to go and collect it. The nurse on the phone was pretty nasty to my mum and said that she needed to see all the details from my Pain Management Doctor to make sure that it had been prescribed by him before she could dispense it because of what type of drug it is!!!

That is OK BUT when my mum took the prescription down on Friday, she gave them all of the details from my Pain Management Doctor AND when the Ketamine was prescribed to me, my Doctor wrote to the chemist and told them that it was OK for me to get repeat prescriptions every 9 days should I need to!!!

All of those details are on the flippin' records but yet the nurse made it out like my mum was a drug seeker and didn't believe anything she said!!!

My mum is now going to have to call my PM Doctor to tell him to write to the chemist and tell them that he HAS prescribed the Ketamine and that I need it to try and help with my pain. I really hate taking it but I have been off school since Friday now because the pain is so bad and I just don't feel well at all!

I'm sick of being made to look like I am a drug seeker. I'm sick that my mum has to deal with all of this when she has done nothing wrong and is just trying to help me and I am so sick that they have to make out that everyone that is on Ketamine is just a druggy and that they need help!! That is not the case at all and it is used in many hospitals to treat chronic pain and used for people that are in accidents etc.

Why do Doctors have to make it out that it is just for drug addicts take?!?! I KNOW many drug addicts take it but so do people with RSD and other chronic pain conditions and it's horrible that people have to label us as a drug seeker just because we have to take a strong drug to function without actually looking into the illness!!!!

I really hope that they will be able to get all of this sorted out soon so that hopefully I will be able to get my pain under control somewhat. It has been really high since we got back off holiday and I have hardly done anything other than lay in bed for the past few days!!

Thank you for letting me rant - I just needed to get it off my chest and i'm sure you all understand!!!

We've Been on Holiday!!!

2009-03-11T08:44:00.000-07:00

As i'm sure some of you already know, we have just got back off holiday!!!! We went to Las Vegas on the 1st March for 5 days and had a good time!

The Plane Journey was really difficult and caused my leg to swell up a whole lot more than usual and my pain went up a lot also but we expected that anyhow as my Pain Management Doctor said that would probably happen due to the Cabin Pressure. It takes nearly 11 hours to get there so I was pretty uncomfortable on the plane due to the lack of legroom but I survived.

We saw lots of really impressive sights in Vegas. We went up the Eithell Tower which is really good - I just wish I was in a better mood as I was crying because my leg was hurting a lot, we went up the Stratosphere tower also which is amazing as you can see all of Vegas from there, to the Hoover Dam which was really interesting, into all of the hotels to do a bit of shopping, saw a magic show with pets in it that was really good, went on a few rides although we didn't go on that many as we had to be careful because of my RSD and also the Adventure Dome at one of the hotels was shut for maintainance and did a lot more!!!!

My dad doesn't really understand RSD which is really frustrating!! I had to sit down every 10 minutes or so because my leg was hurting and he just didn't understand and kept saying "Oh, it can't be that bad!!" or would accuse me of faking it - even though I had a really blue, swollen and rotated leg!!!! I really wish he would come and see my Doctor so that he could explain things better to him but he wont - he has only been to the hospital 3 times in the last 2 years or so that I have had RSD!!! My mum understands what RSD is thankfully as she has been there for me since day one and kept telling my dad that the pain IS bad but he still wouldn't believe her really.

Here are a few pictures from the holiday that I thought I would share with you all - I hope you like them!!

Me with my Juicy Couture Bag in Caesers Palace ... that was the only store we could afford anything out of as everything else was just too darn expensive!!

Me and my dad up the Stratosphere Tower on the last night of our holiday!!

Me with a giant M&M outside M&M World - that store is amazing, it has 4 floors of things all to do with M&M's and even it's own ride/simulator!

Me on a Lion!!!

Me singing on American Idol in Madame Thusaurds (a Wax Work Museum)

Me on American Idol again!!

My mum with Johnny Depp!!

Me with Zac Efron from High School Musical!!

Me kissing Zac Efron ... if only it was real !!!!

Me on an Harley Davidson!!

Dolphin having it's Blood Pressure taken - that was pretty cool to watch!!

Dolphin Singing!!!

Dolphin Singing ... I love that picture!!

White tigers - the Zoo Keepers explained that these tigers have a pigment condition which is why they are white!

White tiger again with tongue hung out - sooo cute!!!!

Leopard cub that I fell in love with!!

Leopard Cub playing with Keeper!!

Hoover Dam!!

Hoover Dam again!!

Fountains outside Bollagio Hotel - they are really good to watch!!

Fountains again!

Fountain Display inside an Hotel!!

Me in Caesers Palace!!

Meeting at College on Tuesday

2009-02-26T13:11:00.000-08:00

First of all, I would like to say a huge thank you to everyone that has supported me throughout the past week or so and even longer than that for that matter! I have been going through a lot lately and dealing with a lot of stress and your support has meant the world to me so thank you all for always being there for me - it means a lot and I just hope I can repay you all back in some way!!

I had a meeting on Tuesday with the College near where we live. As some of you may already know if you have been reading my Blog, I am currently taking my Year 9 Options which is where you basically choose which subjects you want to do in the last 2 years of School. You have to take Math, English and Science and then you can pick any other subjects you would like to do.

The meeting on Tuesday at College was about a course that I am hoping to do. The Course is based on Health and Social Studies and lasts for 2 years. During that time, you learn a lot about health, first aid, how to look after small children etc.

The teachers at the meeting were really friendly and they gave me and my mum lots of really useful information. Because I have been off school for so long due to my RSD and other health issues, we have to get my Pain Management Doctor to write the teachers a note telling them about my RSD, how it affects me etc.

I have to go for an interview on the 22nd and 23rd April and I should find out a few weeks after than if I am going to be accepted or not!! I really hope that I will as I think it will be really useful for me seeing as I want to be either a Psychologist or Physiotherapist.

Will the Course be a lot of hard work? Yes, there is no doubt about it and I have been told that already by all of the teachers. Am I prepared for it though? I think I am yes! I know it will be a lot of hard work but I think it will all be worthwhile as long as I can cope with it and I remember to pace myself! The teachers on the Course already know about my RSD and said that if I get onto the course and need time off, that is fine as long as I catch up in my own time! I was SO shocked on Tuesday as one of the teachers was a nurse and she actually knew what RSD was ... not many people have heard about RSD so that was a huge surprise!!!

I will keep you all updated and let you know when I hear anything else - please keep your fingers crossed for me!!

Makeover Day!

2009-02-10T05:13:00.000-08:00

For my Birthday, I got a great present from my mum and dad and got to go for a makeover day!!

I had the Makeover done just over 2 weeks ago now and I had such a great time and it was so nice to get pampered as I am pretty girly and it is something that I haven't been able to do a lot of since I have had RSD as I just haven't felt up to it really!!

Me and my mum went to Manchester, UK, which is about an hour and a half away from where we live and we both had a lovely, girly day!!

I got to have my hair done and the hairdresser was really nice and wasn't pushy and actually asked me how I felt and whether I wanted anything changing once he had finished etc! The hairdresser put lots of short layers into my hair and I love them - beforehand, my hair was always VERY curly and used to stick out a lot but since I have had it cut, it has stayed straight throughout the day after I have straightened it and it is very easy to manage!!

After I had my hair done, I got to go and have my nails and make-up done! That was lovely and the nail beautician gave me a lovely massage but didn't press down too hard on my RSD arm which was very good as it is still pretty sensitive!! I decided to have my nails painted red and picked out a lovely colour ... there was that many to choose from which made it extremely difficult!!

After my nails were finished, I got to go and have my make-up done and I really enjoyed that - it was so nice to get pampered!! The beautician went for a "smokey eyed" look but didn't put too much make-up on because of my age ... I liked it a lot though and think it really suited me!! She also gave me lots of hints and tips on how to hide any imperfections, spots etc etc!!

When my make-up was completed, me and my mum went and sat down whilst we waited for the photographer to come and take my pictures!! The photo-shoot was so much fun, and the photographer was very understanding about my RSD leg as I told him I only really wanted "head, shoulder and waist" shots as I was still very self-conscious about my leg!!

It was amazing what props they had to take the pictures and how they got me stoood in different pictures etc ... the Photographer could literally just put a pink piece of paper over the lens on the camera and it would make the background pink but not me - sooo cool!!

I took 3 outfit changes so that I could have a casual look and 2 dressier and party looks! The Photographer came up with lots of great ideas on how to get me stood so that they could achieve the best pictures etc!!!

Once the pictures were finished, we were told to go and have a drink as it was an hour wait to go through all of the pictures! Me and my mum went and had a coffee and a bit of something to eat in Starbucks and when we returned, the Photographer said that he wanted me to do some more pictures as they had a problem with the lens and some of the photos had disappeared!!

By that time, I was getting pretty tired and my leg was hurting a lot but we managed to get some lovely, casual pictures!!!!

After the second photoshoot was finished, me and my mum got to go through all of the pictures! They took about 40 pictures and it was extremely difficult trying to choose what pictures we liked and which we didn't!! I think we would have kept them all but it would have cost a LOT of money that we just couldn't afford!!

Eventually, we came up with 13 pictures that we thought were the best and the Photographer gave us a good deal on them ... they were still pretty expensive but my mum said it was well worth it so she didn't mind too much!! We haven't got any pictures of me recently because of my RSD so it is nice to have some good pictures that we can put in the house!!

Here are some of the pictures below ... i'm sorry for only just putting them on but I have only just found out how to resize them onto my blog lol! I hope you all like them!!

I like the above image as I think it looks very casual and I don't look too old in it!

I love this image as I think it is very bright and pretty unusual - when I had the makeover, the Photographer told us to go for a black background instead of the yellow but it just didn't look right!

I like the "close-up" look on the image above!

I absolutely loved the chair that I was on for this picture shoot - it was a shoe and I really wanted to take it home as it was so young and funky lol!

I like how I am sat on the steps on this picture and even though you can tell that my leg is rotated out to the side, I don't think it is too obvious and think anyone that doesn't know I have RSD would just think I had it like that for the photo to be taken!!

I love the pink background on this image as it is just like me ... really girly!!

A lot of my friends and teachers say that they like this picture the best as I have a lot of attitude in it and that was the look the the Photographer and I was going for!

I like the close up look on the above picture also as I think it is really different and you don't see pictures like that too often!!

I like how I have my arms on my chin on this picture and think the pose is really good!

This image is probably my favourite but I really do like them all!

I was in a LOT of pain when these images were taken but who would have known it?! It just goes to show that even though you have RSD, you don't have to put your life on hold and that a bit of pampering can make a BIG difference!!!

I Have Seriously Had Enough Snow Now!!

2009-02-03T10:05:00.000-08:00

I have seriously had enough snow now!!!!! The UK is currently having the worst snow storms in over 18 years and it is horrible; all of the roads are blocked, cars are going skidding everywhere, schools are closed and my mum has had to have time off work for 2 days now!! I was supposed to have had a Physiotherapy appointment today but had to cancel it as it is horrible near where we live and around the hospital grounds!!

It was my Birthday yesterday - I have just turned 14 and I can't believe it ... it only seems like 2 minutes ago that I was 10!! We were going to go out with my family for a Birthday meal but couldn't get because of all of the snow and black ice that is on the roads!! They have been and supposidly "gritted" the roads but it certainly doesn't look like they have done a good job!!

I did have a nice Birthday all in all though, I got to spend lots of quality time with my mum and got lots of lovely presents and money! A very big thank you to Felicia for sending me a present ... you really shouldn't have Felicia!

Hopefully the weather will be better tomorrow so that we are able to go for my meal - the weather has really affected my leg!! Me and my mum are going to see the Pussy Cat Dolls on Thursday for a late Birthday treat so that should be fun if we are able to go ... I have seen them live before and they were excellent!!!!

I hope you're all doing OK and thanks for reading my rant!

Decisions, Decisions!!!!

2009-01-29T04:48:00.000-08:00

Yesterday, me and my mum had a meeting at the School to talk about my Options! For those of you that don't know, Options are basically where you choose what subjects you want to take in the last 2 years of School - you HAVE to take Maths, English and Science and then you can choose what other subjects you would like to take depending on what you want to be when you are older!!

The meeting was mainly so that the parents and guardians could see what the Options are and to help their child make the best possible decision!! All of the teachers spoke and infomed us about what we would do in each subject and then we were allowed to have a look round the School and talk to the teachers and staff that run the course we were interested in!!

I am really interested in being a Physiotherapist or Psychologist when I am older so me and my mum went to the Music Room to talk to the staff about it! This one teacher was really horrible and said that because I haven't attended school for such a long period of time, there is no way I could be accepted onto the course!! I was really angry and shocked and I didn't know what to say - I felt like I was being discriminated against just because I was disabled!

We left the room in shock and went into the Dining Hall and spoke to one of my friends who also has health complaints similar to mine and she was interested in the same course of me also! She couldn't believe what that teacher said to me and my mum and said that she had seen another teacher about the course who was really lovely and helpful!! My friends mum told us where to go to see the teacher so off we went...

This teacher was really lovely and my mum explained my health conditions to her and she said that it wasn't a problem and that I would probably still get accepted onto the course!!! She said that if I needed to have time off school due to hospital appointments etc, I would just have to catch up on the school work in my own time!!

The course that I am interested in is called 'Health and Social Care' and it lasts 2 years. I have been told that it will be really hard but it is something I want to do and feel would help me so hopefully, it will be all worth while!! On the Course, you learn a lot about health and you also have to do 50 hours of Placements in a Nursing Home, Hospital, Nursery, Maternity Ward, Court, School etc etc so it sounds really interesting!!! At the end of the course, you get 7 GCSE's (qualifications) and then you can either go on to college or get a job!!

A lot of my friends are applying for the course also so if I get accepted, hopefully I will be with people that I know! The teacher said that 15 people apply and usually around 12 people get accepted onto the course so I have a high chance of getting accepted hopefully!!

We also spoke to the ICT (computer) teachers about a computer course that I would like to do and I have been told that I might be able to do some of the course at home but that it would be better if I came into school to do it as I would get more help! I am now looking at going back to school on a part-time basis, maybe for 2 hours a week and then build it up from there when I feel up to it! There is no way I would be able to cope with full time at School at the moment so I don't want to drop out of the School centre altogether at the moment as i'm happy there but at some point, I will have to stop going as much in order to do the course!

The course starts in September and me and my mum have to go to a Opening Evening at the College in February and then I have to go for an interview which is where they will choose whether I am suitable for the course! We should find out in April if I am going to get accepted onto the course and then I have a lot of preperation work to do for September!!

It's quite scary making all of these decisions as this could rule my life but hopefully, I will have made the right decision and be happy!!....

High School Musical!!

2009-01-24T10:16:00.000-08:00

Me, my mum and one of her work collegues (who is also a friend of mine!) and her mum went to see High School Musical: The Ice Tour yesterday at an Arena near where we live!!!

On the way to my Physiotherapy appointment on Wednesday, I saw an advertisment about High School Musical and said it looked good but never thought anything of it really! My mum then went on the Internet and booked us tickets to go and see it - I was so excited!!

The performance was really good and all of the ice-skaters were excellent - it was fascinating to watch as they could just literally jump up and down on the ice and ride a bike without falling over!! The Cast looked just like they do in the movie; in fact, if you didn't know it wasn't the real cast, you would have thought it was as they looked so good!!!

The show was split in two different sections - they performed High School Muscial one and two but it was really clever how they did it!! Me and my mum have seen High School Musical performed in the West End of London but it wasn't on ice so it really made this one different and more interesting!!

I really enjoyed it and so did my mum and the others!! I am paying for it a lot now as there wasn't a lot of legroom yesterday and it's affected the pain in my leg and made my leg angry but it was definitely worth going to see and it was nice to get out of the house for a change!!

Update Re My Health and Other Events Happening In My Life!!

2009-01-19T11:36:00.000-08:00

I'm sorry that I haven't updated you all with everything that has been going off with me for such a long time. Things have just been so busy here and I am having a pretty hard time adjusting to life without my grandad - I try to put a brave face on for my friends and family but it isn't easy to say the least and I often find myself crying in tears on my own in my bedroom. I am one of those people that isn't very open about my emotions; I always want to try and be the brave person but I have to realise that it is OK to open up and that it doesn't make you weak. I am always giving people advice and telling them to tell people how they feel inside but I am my own worst critic in a way as I don't follow the advice I give!!!

My mum got a Phone Call today from my Physiotherapist's in Great Ormond Street, London. I was supposed to have been on the Intense Physiotherapy Program now and was due to be having my leg casted but my mum ended up cancelling the appointment as even the thought of having my leg placed in a cast scared the h*ll out of me!! The Physio's wanted to know how I was doing and they asked my mum whether it would be possible for me to go back onto the program again soon. I didn't really want to have to return back onto the Program (who would?!) but the Physio's have booked me in for 2 weeks from the 27th April.

After my mum spoke to the Physio's and told them that she was concerned about casting my leg, they eventually decided that they wouldn't cast my leg this time but if the next Physio program doesn't work, then they will have no choice but to have to cast my leg. I am just hoping and praying that the Physio will help me and get rid of the Dystonia as I really don't want to have to go down the casting route. I've had my leg casted before in the early stages of my RSD and it made me so much worse so I don't know if I am prepared to go down that route again.

I see my Physio's on Wednesday. I haven't seen them for about 10 weeks so i'm looking forward to seeing them and hope that they will be able to give me some exercises to do that might help my leg. The weather is so horrible over here in the UK at the moment so it's made my pain somewhat worse!

My friend was rushed into hospital on Friday. She collapsed and she was totally non-responsive and her mum said she was out of it for about half an hour so she had to call an ambulance. Her face also swelt up really bad whilst she was in hospital so they had to put her on a really strong course of IV Antibiotics. She is out of the hospital now thankfully but the doctors still aren't sure what is the matter so she has to go and see another doctor this Thursday who might be able to help her. I'm hoping to go and see her either tomorrow or Thursday with my mum as I haven't seen her for ages and want to check that she is OK.

My great-aunty passed away a few weeks ago. I guess it's a blessing in a way as she was very ill. She had terminal cancer that was throughout her entire body and she was also developing Dementia from being in the hospital. She couldn't have any Chemotherapy as she had a severe blood-clot in her leg and even if she could, it would only have given her a few weeks at the most. The funeral was last Friday; I didn't go as I thought it would be too upsetting after the loss of my grandad.

School re-started about 2 weeks ago. I have missed 2 days already as I haven't been feeling well but the teachers are very understanding thankfully so it makes things a lot easier and I don't feel quite as guilty. I have started getting a taxi to the school now; it makes things somewhat easier for my mum as she isn't having to take me to school and then go to work but the taxi drivers are a bit ignorant sometimes. One day they turn up really late and the next day they will turn up really early so you never know where you are really and i'm not always ready. I share the taxi with 2 other children from near where I live and the taxi is free so it isn't too bad!

I have to go to a meeting with the School next Wednesday about my Options. Options are basically where you choose what subjects you want to do in the last 2 years of School - you have to do Math, English and Science and then you can pick whatever other subjects you want to do. I want to be a Psychologist when i'm older so I have been told to take something like Social Studies as that should give me a lot of experience. It's hard to believe that in another 2 years I will be graduating from School - it only seems like 2 minutes ago that I was attending high-school!! I'm getting pretty nervous about the meeting; all of the teachers make a big deal about it but hopefully it should go well!!

My mums booked tickets for me, her and my dad to go to Vegas soon!! We fly to Vegas on the 1st March and get back on the 6th. I'm looking forward to going as I need a break but i'm also a bit scared about flying with RSD as i'm not sure how I will react!! We have been to Vegas before I got RSD and I loved it - my parents don't gamble at all but there is still so much to see and do!!

I will keep you all updated. I have a busy week this week with appointments so i'm sure I will have plenty to fill you in on!! Thank you all for reading this and I hope you are all having a good day!!

My Fur Babies!!

2009-01-15T04:37:00.000-08:00

Here is a few links to some pictures of my fur babies ... I did try to get the pictures directly onto my blog but they are far too big and i'm not sure how to resize them at the moment!!

I hope this works!! I don't have pictures of all of my pets on the computer so here's a few but i'll try and take some more pictures for you all later!

This link is to a picture of my beautiful, one year old Springer Spaniel, Jack! This picture was taken quite a bit ago so he has grown a lot since then!!

http://i381.photobucket.com/albums/oo256/RSDteen/CIMG1809.jpg

Here's another link to our dog, Jack!! I think this picture is so funny as his head looks so much bigger than his body lol...

http://i381.photobucket.com/albums/oo256/RSDteen/CIMG1863.jpg

Here's Jack again - he was making a mess when this picture was taken!

http://i381.photobucket.com/albums/oo256/RSDteen/CIMG1888.jpg

The following picture is of our old dog, Ben who has sadly passed away now. He had a very good life and lived til he was 14 which is pretty old for a Springer Spaniel!

http://i381.photobucket.com/albums/oo256/RSDteen/21142831.jpg

This link is to a picture of my Chameleon, Gizmo! I have had him about a year now and I absolutely love him - he is SO fascinating to watch!!

http://i381.photobucket.com/albums/oo256/RSDteen/CIMG1939.jpg

I know the pictures aren't very good so i'll try and take some more later! I hope the links work, if they don't, please let me know and i'll try and get them sorted!

I Got Tagged!! ...

2009-01-14T11:40:00.001-08:00

One of my very close RSD friends, Lisa Moon tagged me. I thought it would be fun to complete this challenge and to try and think of 25 things about myself that I am willing to share with others and what other people may not know about me already and might find interesting.

Thank you very much for the tag Lisa - this looks like a lot of fun although I will admit I am slightly nervous as this is the first time I have done anything like this!!

Rules: Once you’ve been tagged, you are supposed to write a note with 25 random things, facts, habits, or goals about you. At the end, choose 25 people to be tagged.

OK, here goes...

1) I am an animal lover!! I am absolutely mad about animals and whenever me and my mum go to Pet Stores and I see all of the little and cute animals there all on their own, I always want to buy them and take them home with me!! Thankfully, my mum is an animal lover too!

2) I have a Springer Spaniel called Jack, an African Grey Parrot named Sparky, a Chinchilla called Tabatha, a Chameleon called Gizmo (he is SO cool!) a Dwarf Russian Hamster called Honey and about 5 fish!

3) My hair is dyed. I have my hair brown at the moment with red highlights in it and I love it!! My natural hair colour is brown - when I was born, my hair was jet black but it's got lighter as i've got older!

4) I am a self obsessed cleaning freak!! I like everything to be spotless and I always like to make myself look tidy and think personal hygeine is VERY important!

5) I don't have any siblings. I have never really been bothered for a little brother or sister - I like being in my own company too much!

6) My favourite colour is pink - I am VERY girly!!!

7) I suffer from a Chronic Pain Condition called Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy) in my left leg and right arm. I developed CRPS when I was just 12 years old and I am now 13! CRPS is probably one of the most hardest things I have ever had to deal with but I DO have faith and hope that things will get better one day!

8) I absolutely love the singer, Katy Perry - she is great and has an amazing voice and I love all of her songs as they are sooo funny!

9) My Birthday is on the 2nd February. I was actually late arriving into the world - my mums due date was the 23rd January!

10) I currently attend a special School Centre 3 days a week for 4 hours a day as I am unable to attend full-time school due to my CRPS. I love the School Centre as the teachers and pupils are VERY understanding of my illness and don't treat me any differently but I would love to be able to attend a proper, mainstream school!!

11) I will only eat white meat - I absolutely hate dark meats such as Beef and Pork!!

12) I have 2 hobbies. I absolutely love Card Making and Scrapbooking!!! I make cards to sell to my friends and family to try and raise money for the hospitals that have been treating my RSD and I really enjoy it as it is a good distraction from the pain!

13) When I grow up, I would absolutely love to be either a Psychologist or a Physiotherapist. It is my goal to try and help others and this condition has really opened my eyes

14) I have always had low self-esteem since I was little. I am naturally a very shy person and it really frustrates me at times as it makes it hard for me to meet new people. It's strange as I can talk forever on the computer to my friends but when it's face-to-face, it's a totally different situation!!!

15) I am a huge Playboy fan - I have Playboy duvet covers, pillow cases, stationery etc etc!!

16) I am Hypermobile which means that I am very flexible and can get my joints into lots of weird positions. My Physiotherapist's believe that this could be one of the reasons I developed CRPS/RSD.

17) I also suffer from Dyspraxia which means I can't co-ordinate my limbs very well at all and struggle from subjects such as Maths.

18) I am not very religious although I do respect other peoples religions and beliefs.

19) I absolutely love Ice-Skating but I am unable to go now because of the RSD unfortunately!

20) My cousion is due to have a baby boy any minute now!! Me, my mum and my nanan didn't think she would get right to the end of her pregnancy as she is very big but she has and is due tomorrow!

21) My grandad lives in Spain - many of you might think that that is really good but I miss him a lot and we don't get to see him very often due to school and my mums work patterns.

22) I always tend to put others before myself ... it is good in some ways but I guess it is also bad in others as I tend to "forget" that my life is important too and that I NEED to put myself first for a change.

23) My favourite subject at School is English. I have always loved English and when I was young, I would spend hours reading or practising my hand-writing!!

24) I am currently taking my Year 9 'Options' which is where you basically have to pick what subjects you want to carry on doing in school. You HAVE to do Math, English and Science and then you can pick any other subjects you want to study. Teachers use Options a lot to help teenagers of my age to figure out what they want to be when they are older.

25) Last but not least ... I have learnt a lot since developing RSD and I DO feel that it has made me see life in a different prospective. Before I got RSD, I guess I used to take things for granted but I am now very thankful for what I am able to do and I always try to realise that things could always be so much worse!!

So, there you have it!! I found that really fun but also pretty hard at the same time! I always tend to have a problem trying to think of things when I want to (probably from the RSD and meds!).

I don't know that many people that have a Blog so i'm not going to 'Tag' anyone at the moment but should anyone wish to be tagged, please let me know as I am more than willing to involve you in this activity!!

I hope you all enjoyed reading my 25 things about me and I will be back soon with an update about what has been happening with me and my family!!

Time to Reflect on The Past Year

2008-12-31T02:33:00.000-08:00

As the year ends, I thought it would be nice to reflect on the past year and to think about all of the things that I have achieved, the things that I need to work on, the things that I wish I did differently etc.

2008 has been a very busy and stressful year for me. I have been going to hospital appointments weekly and sometimes even more than that, have attended 2 Intense Physiotherapy Programs which ment I had to stay away from home for a little while, have tried various procedures to try and put my RSD into remission, my grandad passed away which was highly stressful and upsetting - the list of things I have done could go on forever and ever but i'll stop there!

I have learnt so many things this past year that I never even imagined were possible, some of the things I have learnt unfortunately had to be learnt the hard way whilst some of the things I learnt for myself by talking to others.

I have learnt that I HAVE to live life to the fulliest everyday because you just don't know what is around the corner. It is SO hard going out sometimes when I just don't feel up to it but I have learnt to as I now realise that you have to live life to the fulliest because you just don't know what is around the corner. I am trying to live my life to the best of my ability and am hoping not to have any regrets, although of course that is impossible!

I have learnt that I am a much stronger person than I thought I was! The 2 Intense Physiotherapy Programs really made me strong and whilst many times I felt like giving in and going home, I didn't and I would never be at the point where I am now if I had have done!

I learnt that it is OK to ask for help and that it doesn't mean that I am weak. Everyone, even without physical problems have to ask for help at some point in their lives and it is completely normal.

I have learnt to listen to my body and not push myself too much. At the beginning of my RSD journey, I just would not listen to my body and I always ended up in major flares afterwards. It was hard trying to listen to my body in the beginning but I am getting there slowly.

I have learnt that I can help people that are in a similar position to me even if it is just a little or if we live miles away!

I have learnt a lot...

I still have a huge way to go in battling my fight against RSD but I truly believe that with persiverance and a little time and effort, I will get there and nothing is impossible! As Felicia said, "Spread your wings and fly, nothing is impossible"!

Many times I feel like giving in but then I realise that things could always be soooo much worse and that I am lucky to be able to do some of the things I can do, even though it might not feel like it at times. I am thankful that I have a roof over my head, food and water, can walk short distances etc ... many people aren't so lucky!

I have learnt a lot this year and I have had to learn some things the hard way which was extremely difficult but I truly believe that things happen for a reason. I am going to try my darn hardest to fight this monster RSD in 2009 and try and get it into remission somehow!!

I also wanted to wish you all a great New Year and I hope you are all blessed in every way possible!

Merry Christmas Everybody!!

2008-12-26T05:45:00.000-08:00

I would just like to take this time to wish all of my fellow Blog Readers a very Merry Christmas and I hope you all got everything you wished for and that you had fun with your friends and family and got to create many happy memories that you will be able to treasure forever. Thank You all so much for taking the time out to read my blog and to comment - I truly appreciate it and know a lot of the time, I ramble but it really helps me to be able to get my feelings out and I love reading all of the comments from people! I hope that 2009 is a great year for you all and that you are blessed in every way imaginable!!

This Christmas was pretty tough for us this year as it is the first Christmas without my grandad and we all miss him SO much! Christmas just isn't the same without him; he was always the one that would buy us all little novelty gifts and would ALWAYS have to have the best Christmas trimmings on the street - he loved Christmas and spending time with his friends and family!

I got lots really good presents. My mum and dad got me an IPhone which I have wanted for absolutely ages but never been able to afford! I absolutely love it and haven't put it down since I got it yesterday morning!! I also got lots of lovely designer clothes and shoes that will be comfortable for my RSD leg, a new handbag, Me-to-You teddy bears, Chocolates, Skin Care and Make-up and so much more!! I also have quite a bit of money from my nanan and uncles so we are going to the Christmas Sales today to see if we can get anything!!

We had a nice Christmas dinner yesterday. We didn't have Turkey has non of us really like it so we had Chicken instead and it was lovely. My mum also made a Chocolate Cake for desert that was so delicious!!

We also went and spent some time with my grandma to make sure she was OK. She said she was fine but she was really quiet which isn't like her - I think it's hit her really hard with it being the first Christmas without my grandad. We spent about 4 hours with her and she loved the presents that we got her - we got her some shoes and a book and are going to take her for a vacum cleaner when she has picked one she wants. My Uncle has asked her to go for a meal with him tomorrow so that should be nice for her as it will get her out of the house for a bit - he also wants her to go to stay with him for a week for the New Year but I don't think she wants to go as she feels it is too soon at the moment and doesn't really want to leave home.

I miss my grandad SO much but I know that life has to go on somehow, even though it is extremely difficult to do so. I know my grandad would want us all to try and have some fun as he loved Christmas so that is what we are going to try and do and I also know he will be looking down on us and will never leave our side, even though we can't see or talk to him in person unfortunately.

I hope you all had a great Christmas and I wish you all a Very Happy New Year!

4 Days Until Christmas!!

2008-12-21T07:00:00.000-08:00

Can you believe it is only 4 days until Christmas?!?! The time seems to be flying by at the moment and we still have some Christmas shopping to do for my Uncles but thankfully, it is nearly all finished and is all waiting to be wrapped up - yay!!

I have been in a pretty bad RSD flare for the last week or so. My leg is rotating out to the side more and more and my mum say's I am limping a lot more than usual when I try to walk anywhere. I was supposed to have had a Physio appointment this week but just didn't feel like going so we cancelled it - I don't think my Physio's were too pleased as the next appointment isn't until the end of January but at least I will get a break!! I haven't been sleeping well at all so I don't think that is helping as I have a lot on my mind and everytime I try to close my eyes, I have weird dreams!!

We went to my great-grandmas yesterday to take all of her Christmas presents down. We got her a bath-board for Christmas - I know it isn't very exciting but she is 87 and can't walk much so we thought it would help her. As soon as we took the present into her house,she started panicing as she didn't know what it was and kept begging us to tell her what it was, we tried ignoring her but in the end, my mum had to tell her as it was the only way to stop her from panicing. When we told her it was a bath board, she started yelling saying that she didn't want it and that she would give it to someone else!! It's so frustrating at times as she just wont accept she needs help and can be too stubborn for her own good - I love her to bits don't get me wrong, sometimes though we just feel as though everything we get her isn't appreciated as she always gives it away to someone else!!

I went to the Craft store yesterday and got something to make my nannan a card with. I started making the card last night - it took me 2 hours to make it but it is looking really nice!! It was SO hard making a card for just my nanan as i'm so used to making one for my grandad as well and I guess it hit home that this is the first Christmas without my grandad. I guess it's just something I will have to get used to even though I don't want to.

I hope you all have a great Christmas and that 2009 is a great year for us all!

It's Nearly Christmas Already!!

2008-12-16T06:02:00.000-08:00

I can't believe it's only 9 days until Christmas!! We haven't even got our Christmas tree up yet, usually, I am making my mum get the tree up by the 1st December but this year, nobody can be bothered to go and put it up with everything that has happened with my grandad. Non of us are really looking forward to Christmas this year but we will probably try and get the tree up tomorrow as I know my grandad wouldn't want us all to not celebrate as he loved Christmas so much and it was his best time of year as he got to spend time with him family and friends.

Christmas wont be the same without my grandad. He was always the one that made us laugh by coming out with stupid little jokes, bought me extra-special presents, made us get the Christmas tree and kept buying little novelty gifts for everyone. My grandad was the life and soul of Christmas, I always loved going round to his house and spending lots of quality time with him and reflecting back on memories.

I don't have any other grandad that lives in the Country so I think that is what is making me feel more upset and depressed. My other grandad (Mums dad), lives in Spain with his wife and isn't going to be coming to see us this year. He lives about 3 hours away from us and says he wants us to go and see him but it would cost a lot of money to get a flight and it is simply money we can't afford. It is always left to us to go and see my grandad and he never wants to come over here. He never likes spending money so I guess that is one of the main reasons why he doesn't come and see us but still, we are his family and he should be here with us!!

At the moment, I feel like I am grieving over 2 people and it makes me really upset to think that my grandad who has just died, didn't want to leave us but had to and my other grandad just left us because he wanted to. My mum is a bit sick of what my grandad is doing to us also and she has said that to him many times but it never seems to sink in and he just goes on about how happy he is over there and how he wouldn't change it for the world. I'm happy that he's happy, don't get me wrong, i'm just upset that he isn't here and wont be spending Christmas with us as a family.

We have got most of our Christmas shopping done now. My mums ordered most of it online as I didn't feel like going and looking round all of the shops for presents. We don't have a clue what to get my nanan, we want to get her something special but don't know what she would like. We were thinking about taking her to London for the day to watch a Musical so that I could spend plenty of time with her for a treat but we don't know what she would like to go and see really. We've got her a cookery book as she loves cooking but want to get her something else for a treat.

My mums arranged for me to go and have a beauty makeover for Christmas. She wasn't going to tell me but had to because I was going to tell my great grandma to get me it!! It is something that I have always wanted to do; I don't want to be a model or anything but I always think it's nice giving your family something that they can treasure and hang in their homes. I will be getting my hair and make-up done and then will have professional pictures taken of me in lots of lovely clothes (we have to take our own so I think we'll be going on a shopping spree when the sales are on!).

I've been trying to channel my enery in a positive way to try and shake this depression that I feel I have coming on. Felicia has really helped me and told me that everytime I feel depressed, to think about the nice things that I have coming up after Christmas and think that my grandad would want to see me happy. It really does help when I remember to do it - I have been leaving post-it notes everywhere reminding myself that when I feel depressed, I have to channel my energy in a positive way!!

Merry Christmas everyone - I hope you all have a great time with your friends and family and get all of the presents you wished for!!!

Forum Troubles and Being Stressed

2008-12-14T09:43:00.000-08:00

As most of my blog readers know, I lost my grandad 3 weeks ago and I also run a support forum for people with RSD and their friends and family.

I have been SO stressed with everything that has been going off in my life and my familes and was frustrated on the forum when I posted a message and no-one replied to what I had written. I guess I just felt like I had done so much for the forum but no one semt to want to help and support me when I needed someone to talk to. My mum noticed the post before I did so she posted a message saying that she was frustrated and angry that not many people were replying to my posts even though I am going through a very rough time right now but still take the time to reply to others. She also mentioned that she felt now was the time to take a break from the forum and maybe step down from being an Administrator, at least until I can get things back onto an even keel.

After I saw the message that my mum had wrote, I also posted a message saying that I too was frustrated with people that weren't replying to my posts. I didn't put anything nasty but I just said that I felt now was the time I stopped doing everything on the forum. People then replied saying that I had hurt their feelings and that basically what I was saying wasn't true and that they are all there to support me even though some of them have not been. Just the other day, I was talking to someone on Yahoo IM and they knew what had happened with my grandad but still persisted in telling me about how bad their life is, in the end I ended up having to say I had to go because they were really annoying me.

Some people on the forum (especially Felicia) have been great but with others, I just feel like everything has been left to me and that I am having to do everything even though i'm not feeling well myself. I just can't understand why people can't seem to understand what I am saying and realise that I need to take a break otherwise I am going to end up going into a huge flare!!!

I've still decided though that I need to take some time to myself, to relax and just unwind and take care of myself and my family. There is just too much going off right now in my life without having to worry about the forum all of the time.

Hopefully, once I am feeling better, I will be able to go on the forum more but it's just so frustrating that people can't see things from my point of view and realise that once in a while, I may need to take a break!!

I'd like to take this time to thank a few people also that have helped me so much and always been there for me no matter what:

Felicia (Alessea) - Thank you ever so much for being here for me and everything that you have done for me. You have helped me so much more than you know and I could never thank you enough for seeing things from my point of view with the forum and for understanding. You are the best friend anyone could wish for and I could never thank you enough!

Lisa (Lisa_Moon) - Thank you ever so much for taking the time out to read my blog and comment, it really helps knowing that people are here to listen to me let off steam and I could never thank you enough also ((hugs)). I really hope things are better for you and that you have settled into your new home now!

My mum - Thank you so much for always being here for me and for supporting me 100% in everything I do. I could never in a million years thank you for all of the support you have given me - you're the best! I love you so much!

One of the Worst Weeks of My Life

2008-12-07T14:10:00.000-08:00

This week as got to have been one of the worse weeks of my life. I am so physically and emotionally shattered at the moment that I don't know whether I am coming or going and the little energy that I did have before all of this happened as just about gone.

On Monday, me, my mum and my nanan went to see my grandad in the Chappel of Rest and that was so hard. My grandad just looked so normal and we all expected him to just jump up and say "I fooled you all" but I guess it is just wishful thinking unfortunately. My grandads coffin was full of pictures of all of his grandkids and kids and I put a letter in that I had written to him and my nanan put his favourite had in (he would never go anywhere without it!).

We didn't stay in the Chappel of Rest very long as it was too upsetting but we all said our goodbyes and told my grandad that everything would be OK.

Tuesday was the day of the funeral. I honestly don't know how I managed to get through it all. It was SO much worse than I ever imagined it would be. I think it made it harder with me going to the Chappel of Rest but I honestly wanted to go and say my goodbyes. Even just seeing the coffin out on the street made me cry. When we got to the church, we said our prayers and sang hymns and the vicar spoke about my grandads life. It was SO hard when he spoke about how my grandad met my grandma and how much he lvoed all of his children and grandchildren.

On the way out of the Church, the vicar played a football rap as my grandad was a very big football supporter. It was supposed to make us all smile but I think it totally had the opposite affect as everyone was in floods of tears!!

After we got out of the Church, we went to the Crematorium. On the way in to the Crematorium, they played 'I did it my way' by Frank Sinatru and even just hearing the lyrics made me cry. My grandad always had to do things he way and even if we told him to do it the easiest way, he would still have to figure it out for himself!

When they closed the curtains in the Crematorium, I just wanted to stand up and shout that was my grandad and that they couldn't do that to him but I know it's too late unfortunately now, he's gone.

When we got back from the Crematorium, we went to our local pub for a tea service. All of our family was there and it was pretty nice - it's just such a shame that it takes a funeral to bring everyone together. I got to see my cousion, Shakira who had a liver transplant last year and she is doing great! She is only 5 so doesn't really understand what has happened to my grandad.

Wednesday, we took my nanan to town as she wanted to take all of the verses to be put into the papers. It cost an absolute fortune! Thankfully, nearly everyone as paid for their verses but my aunty still owes my uncle some money for both the flowers and the verse. I doubt he will ever got the money back as she is one of those people that just expects everything for nothing. My grandad gave her £2000 for a new kitchen about 2 years before he passed away and he never got the money back! My grandad was always the soft one and would give into her but my nanans promised us that she wont.

Thursday, we spent most of the day arranging things and phoning and filling in forms for my nanan. We should get the ashes back sometime this week and my nanan wanted us to order a rose bush for her. We have ordered one that is yellow and supposed to be a 'Celebration of life' and have named it after my grandad. My grandad always said that whenever anything happened to him, he wanted to be put in the back garden so that is what we have decided to do!

I have spent the rest of the week trying to rest as my RSD is flaring up again. I think the stress and all of the walking and things has really affected me. I have been going to see my nanan every day and it's really hard when I don't feel like doing anything but we need to go and check that she is OK.

I start back at school again tomorrow - i'm not sure if that's a good idea or not. I don't know if I am ready to go back at the moment but on the other hand, I want something to take my mind off everything. At least I know that everyone will be supportive and if I don't feel like doing anything, I just have to tell them.

Sorry for rambling - am still very upset and not sleeping.

How I miss the Little things

2008-11-26T09:37:00.001-08:00

It's amazing how much I miss the little things about my grandad. Like his smiley face, not seeing all of his cardmaking supplies all over the house, not making him a cup of tea when I have to make my nanan one etc.

I miss him SO much already and I wish I could just turn back the time and everything would be OK. They tell you that things get easier day by day but at the moment, I don't think they do, if anything, they seem to get harder.

My nanan got the results of my grandads post-mortum yesterday and it wasn't an heart attack he died from, it was rather Pneumonicosis and Bronchial Pneumonia that he got from working down the pit.

My Uncle also took my nanan to make the funeral arrangements and it is costing a LOT of money to say it is a crematorium!! The corener told all of the grandkids to write a letter to my grandad and that as to be one of the hardest things I have ever had to do in my life. Everytime I wrote something, I would start crying un-controlably. I told my grandad how much I missed him already but also asked him if he remembered when I broke my arm when we went to the caravan and how I was so stubborn as I wouldn't let my nanan take me to the hospital as I thought the taxi would cost too much, instead I waited about 3 days!! My nanan and grandad told me that my health came first, not the money but I wouldn't listen to them at all!!

I also have to find a recent picture of me to put into my grandads coffin. My grandad will be at the Chappel Of Rest from Monday but to be quite honest, i'm not sure if I want to go at the moment as when I saw him in the hospital, it was too painful...

Life is so Fragile

2008-11-23T03:51:00.000-08:00

I'm just beside myself at the moment with shock, guilt and sorrow.

We got a phone call yesterday morning about 9.30am UK time from my grandma (dads mum). She was really worried and said that my grandad had collapsed and that he wasn't breathing and that she didn't know what to do. My mum called an ambulance and my dad rushed round to check on them both.

The Ambulace didn't take right long to come and when they got into my nanans house, they immediately started to do CPR on my grandad to try and get his heart beating again. My nanan and dad asked my mum to go round to their house also so that she could sort things out and my mum said the doctors were working on my grandad for about half an hour in the house before they were able to get him into the ambulance and rush him to the hospital.

When they eventually were able to take my grandad to the hospital, they had to have a police car escort them to try and give my grandad the best possible chance of surviving. My mum took my nanan to the hospital, and my dad came round to check on me and tell me to get ready has my nanan wanted me at the hospital.

When my grandad got into the hospital, the doctors immediately started to do CPR on him again and started wiring him up to all sorts of machines. My mum and nanan wasn't allowed to go in to see my grandad, has it was too dangerous with all of the machines.

The Doctors worked on my grandad for about an hour but unfortunately, he didn't make it and passed away.

When I arrived at the hospital with my parents, most of my family were there. The nurses and my nanan had called everyone and told them to get through to the hospital immediately.

The nurses allowed us to go and see my grandad and say our goodbyes. I went in with my mum, dad and grandma and I have to say, it was one of the hardest things I have ever had to do. We all broke down in tears and my nanan started shouting that she wanted him back and that this wasn't fair. Seeing my grandad laid on the bed with tubes hung out of his mouth really hit me and the reality set in that this would probably be the last time I would ever see my grandad.

We stayed at the hospital for a few hours with my family and we were allowed to go in and see my grandad as much as we wanted but I wouldn't go in again has it was far too distressing. My nanan went in with my uncle to comfort him though.

The nurses explained a few things to us and said that it is suspected that my grandad had a massive heart attack but because it was so sudden, they are having to do a post-mortum. The doctors believe that my grandad passed away within 30 seconds of him collapsing and that he didn't look to be in too much pain thankfully.

When we got home, we went and stayed with my nanan for a bit to comfort her and get her a few things. She couldn't really be in the house on her own has it was too upsetting. She kept looking and staring into the chair where my grandad usually sat (and where he also collapsed) and it was so heartbreaking to see.

My grandad wanted a cremation so that is what we are having done. There will be a lot of people at the funeral has my grandad was loved by everyone and no one had a bad word to say about him. The Undertaker is calling my nanan sometime tomorrow morning to start and sort things out and put things in place.

I am a lot more upset today than I was yesterday. I can't eat hardly. Can't sleep. Don't want a drink or anything. I think yesterday I was in shock and just wanted this to all be a big nightmare and that I would wake up and everything would be OK but now I know it isn't.

I SO wish I told my grandad I loved him more often. Wish I didn't say all of the things I said about him not understanding my RSD. Wish I saw him more. There are so many things I wish I did and so many "If only's" but I know they aren't going to help.

I just feel so guilty about everything I said to my grandad. There are so many things I would have done differently and I SO wish I could just turn back time and everything would be OK.

It just goes to show that life is so fragile and if I could say one thing to my fellow blog readers, it would be to tell your family and friends and loved ones that you love them often as you just don't know what is around the corner.

I better go as i'm in tears here...

GRRR, So-Called Friends!!!

2008-11-18T12:47:00.000-08:00

It's amazing how much this disease, RSD, makes you realise things that you would probably never have even known. I am not thankful that I have RSD because I do not want it (I mean, who would want to live in chronic pain constantly and not be able to walk?!) but I think it has probably helped me realise some things that I would never have known had I not developed this life-changing condition.

One of the main reasons I had to leave my old school was because of my "friends" not being supportive. The teachers at the school had told me that they were all supportive and that they always asked how I was doing and that they couldn't wait to see me so I really wanted to go back there and socialise with my "friends". However, once I returned to the School, all was not as it seemed. My "friends" never asked how I was doing, instead they just ignored me and pretened I didn't exist. I mentioned this to the teachers and they said that I was being stupid and that of course they cared about me. They were supposed to spend breaks with me and go and sit in the library but they didn't, they just went about doing their own things leaving me sat all on my own.

On the first day back to School, one of my so-called friends wouldn't allow me to sit next to her in the form room. My form tutor kindly asked her if I could sit next to her for 10 minutes and she harshly replied "No, she can not"!! The best bit about it is that this girl reckons she also has RSD in her leg, arm, back and teeth so honestly, if she did, she more than anyone should understand how important it is to sit down and rest and how painful this condition actually is.

I also had pressure from teachers, they wanted to rush me into doing things that I couldn't do. One day in Maths class, I had a teacher complain at me for not paying attention, when I told him it was because of my pain, he said that it was my leg that was injured, not my brain!!! I was also hopping on crutches one day to a lesson and the teacher that was with me said that I had to get a move on has she had better things to do! The last thing she told my mum was that everything would be on my terms and that if I was unable to do something, that would be fine. 2 days after that happened, I ended up in a major flare. It isn't surprising really given the amount of stress I was under.

My mum emailed the school and complained but they never replied to her emails so in the end, she ended up having to call them. The School tried to make it out that it was us that was in the wrong and that is was our fault for not updating them - even though we let them know how I was every week!!!

I mentioned what was going on with my friends to the School's Psychologist and she said that on the day I ended up in the flare, they were going to have a word with my friends to try and sort everything out. From what I can understand, they were going to sort of bribe my "friends" into being nice to me. You can't bribe someone to be your friend, you are friends with someone because YOU want to be, not because someone makes you be.

I'm so frustrated over everything that went off at the school with my friends and everything. The more I think about it, the more I think my "friends" were just using me for what they could get. On my 13th Birthday (2 weeks before developing RSD), I took 2 of my "friends" to the arena near where we live to see Rihanna and the Pussycat Dolls, we took them shopping almost every weekend before I developed RSD and bought them things and their dinners, took them to the movies when something good came out etc. While ever I was buying them something, they all wanted to be my friends but when I developed RSD and couldn't take them anywhere, they lost interest very quickly. Thinking about it now though, the day after we went to see the Pussycat Dolls, my "friends" never even spoke to me, it was like they got what they wanted and they were happy and not interested in me.

I need to somehow try and forget all of those bad experiences I had with my friends and try and move on. This condition has really helped determine who my true friends really are. At least at the new School Centre, I know that the children there are my friends because they want to be, not because I buy them things. I think it's easier has they have all being in a similar situations so know how I am feeling in some ways.

From now on though, I am not going to buy people things until I know whether or not they are my true friends. I don't want to fall into that trap again.

Sorry for rambling, I just needed to let this all out has it has been on my mind for a long time and I guess this is what my blog is for!!

My Weekend

2008-11-16T10:03:00.000-08:00

I haven't really done anything this weekend. You see, now that I am going to the School Center, I have to spend most of the weekend relaxing for the upcoming week, otherwise I may end up in yet another flare which I really don't want! It's strange how even just going to a School Center and staying in one place for 4 hours every Monday, Wednesday and Friday can make me so fatigued but trust me, it does!!! I am SO glad that so far the school center is going well and that I have made some new friends who are really nice and supportive ... unlike my so-called friends at my old school!! Apart from the fatigue and pain, I am happy at this center has the teachers understand and don't rush me into doing anything, I am allowed to take a break as and when I need to etc.

The School had a meeting on Friday to officialy "hand me over" to the School Center. We haven't heard anything about how it went but I did get an email from my Psychologist at the School asking how the week at the Center went and if I was worried about anything. I think she thinks that my mum forced me into going to the center even though she didn't!!

I have been talking to my friend, Brogan from the School Center on MSN today. She was really upset has her 19 year old sister has just had a miscarraige. She was about 12 weeks pregnant and was so looking forward to having the baby. Brogan says that she wont even talk to anyone now because she is so angry and upset about what has happened. I comforted Brogan for about half an hour until I had to go but I told her that if she ever wants to talk to someone, that she can always email me. She has been so good to be in the past week that I have known her so it's the least I can do. She said that she will be at the School Center tomorrow but that she may not be her normal, happy-go-lucky self, which is only to be expected. I understand a lot of how she is feeling has I lost my grandma when I was 6 and now that I have RSD, I just feel like I am on an emotional rollercoaster all of the time!

We had the builders in yesterday, they are only supposed to come and work in the week but they had to move our boiler ready for tomorrow. We are having an extension built and a new kitchen fitted has I am quite unsteady on my feet and fall really easily. Hopefully that should make things a little easier for me and my mum.

My mum isn't feeling too well. She hasn't been feeling right for a few weeks now but she now has this weird tingling sensation in the fingers on her left hand. She has promised me that she will call the Doctor tomorrow if it's no better and get it checked out. It's kinda scary has my nanan had Progressive MS and her symptoms started similar to the symptoms my mum is experiencing, although hers was her eyes that started being affected. I've noticed that my mum hasn't been sleeping well either, she gets up at about 5am so I don't think that is helping. She says she feels like I do that no matter how much sleep she gets, she still doesn't wake up feeling refreshed and always feels quite drowsey. I shall keep nagging her until she goes to the Doctors, I think she is scared but like I told her, it's better to be safe rather than sorry and hopefully it will turn out to be nothing serious and it can be easily treated. She's her own worst enemy has before I was diagnosed with RSD, she always wanted to take me to the hospital to find out what was wrong but now SHE is ill, she doesn't want to go!!

My leg has been spasming a lot more than usual today also. The spasms almost threw me off my computer chair this afternoon because they were so bad! It was quite a scary experience to say the least. The weather is horrible so I don't think that has been helping, one minute it is hot and the next it is really cold and raining!!

I'm going to go and try and get some sleep has I haven't been sleeping right well, wish me luck!!...

School and Home Life

2008-11-13T06:09:00.000-08:00

It's my day off from school again today. I am so glad because whilst I love the School, I really need time to relax and "recover" from the previous day.

Yesterday at School we did some Science and Maths work. In Science we are learning about the Digestive System which is really interesting. I did some work on it with my home tutor so I understand some of it already. In Maths we did some work on Percentages. I am rubbish at Maths to be honest because I suffer from Dyspraxia which affects my ability to work with numbers and affects my co-ordination. It is pretty stressful at times has I feel like I am hopeless but at least I know there's a reason why I can't do it. A lady also came in from Connexions to talk about Careers, she was asking what I want to be when I am older and I told her that I wanted to be a Psychologist and help people in chronic pain like myself and she said that I would need to take English and Social Studies. She was really nice and said that I would be a good Psychologist has I know first hand what it is like living in chronic pain. Some of the children are going to a College near where we live next Wednesday, I was allowed to go but I am unable to attend unfortunately has I have to go to my Physiotherapy appointment.

I had a good long chat with a girl at the centre, she is really nice and shares a lot of the same hobbies has me. She gave me her email address and we have been IM'ing eachother today. It's really nice talking to someone who doesn't judge me for a change.

After I got home from the School centre yesterday, I went to my grandparents has the builders were in our house and I couldn't get in. I finally think that my grandparents are understanding what RSD is has they actually asked how I was doing for a change. I had to show my grandad how to send an email has he doesn't know how to do that, it was a nightmare but he got there in the end and has been emailing me ever since!! It's quite good has hopefully I will be able to keep him updated on how I am doing without going to see him if I don't want to. Things will never be like they were with them has they have hurt me too much but I DO think we might be finally getting somewhere. I'm trying not to get my hopes up though has I don't want to be let down once again.

My mum came and picked me up from their house when she got in from work and we went to the store, Asda to do a bit of shopping. I couldn't walk around so just went and had a look at the clothes and then went straight back to the car. They had some really nice fashionable clothes that I looked and I got some PJ's which are nice. They look like a tracsuit but are PJ's so I will be able to lounge around the house in them if I want to.

I'm not feeling too good today. The weather is absolutely horrid (it hasn't stopped raining all day) so I don't think that is helping with the pain at all.

I am going to go and lay down so hopefully I will feel better for tomorrow....

I think my grandparents are Finally getting it!!!

2008-11-12T12:08:00.000-08:00

Yes, you heard that correctly!! I think my grandparents are finally realising that I AM ill and that I need some extra help and to hear some comforting words.

I went to see them again today, it was paticulary buy choice but I had to has the builders are in our house and I couldn't get in after I got back from the School Centre. The first thing my grandma said to me when I walked through the door was, "How are you, you don't look too well?". I told her that I wasn't feeling too well and was really tired has I hadn't slept properly and she told me to sit down and rest and made me some tea. Before today, it was a real nightmare trying to get them to understand and they wouldn't show any interest in my illness what-so-ever but today I actually felt like they cared and wanted to hear how I was. My nanan told me that I need to tell them exactly how I feel rather than trying to protect them from everything, which was nice.

I think that me struggeling round to see them on Monday did help, it didn't help my pain but I do think it made them realise that I can hardly walk short distances and made them understand why I need to use the extension.

I really hope that they are going to start understanding from now on as it would make things so much easier knowing that someone in my family, other than my mum is there for me when I need to just let things out.

Things will never be the same has they were before RSD has they have hurt me too much for me to be able to trust them but I do think they are finally starting to understand somewhat.

A big thanks also to Felicia for writing the letter to my grandparents, I really think that helped also, even though they wont admit to it.

Update: Wednesday

2008-11-11T03:43:00.000-08:00

Today is my day off from School so I am able to get a rest. We have decided that it is best if I just go to the School centre, Monday's, Wednesday's and Friday's, so that I will be able to get a break inbetween and hopefully allow my body time to recover.

Yesterday was a very busy day!! I went to the School Centre for 8.45am. A teacher was supposed to have been coming in to help us with our confidence but she had come down with the flu so wasn't able to come - she is coming next Monday instead. The teachers at the school gave me a load of sheets to fill in and I had to answers questions like, Why aren't you able to go to School, Who do you trust and who don't you trust etc. The teachers wanted me to fill out the form so that they had an idea of what they need to work on with me. After I filled in literally 50 sheets, we went for a break and had tea and toast, which was nice!! After break, the teachers asked me to write a story about an event that has happened in my life. Of course, I decided to do mine about the day I developed RSD, it was really hard trying to remember everything that happened and a bit upsetting but I got there in the end and the teacher was very pleased with my work!!

Monday's at the centre is PE day so all of the children that are able to do PE went into the gym and played fast cricket. Me and another girl who has ME, worked with the teachers and did an ECDL course on the internet. ECDL stands for European Computers Driving License and is a test that you do on the computer and at the end of it you get a certificate and it is a recognised qualification that many employees ask for. A lady is coming in next Tuesday to start the ECDL course with us.

When I got home, around 1.30pm, I went and had a rest for an hour or so and then decided to go on the computer. The builders that are currently working in the house, had to turn the electric off but never warned me. I ended up having to struggle round to my nanans to call my mum and let her know. My grandparents only live about 2 minutes away but the walking almost killed me!! When I eventually got into their house, my nanan said she thought I was going to collapse!!! My nanan and grandad don't really understand so I must have looked bad for them to say that.

I stayed about 3 hours at my grandparents house, I did want to go back home but decided to wait for my mum to come and pick me up in the car rather than struggle any more. I made some cards with my grandad which was VERY hard one handed but I managed!! I used to make cards all the time but either don't feel well enough to make any now or just don't get the time because of other commitments.

My mum came and picked me up on her way in from work and took me back round home. We had about 20 minutes in the house and then my mum decided that she had to go to the pet store for some food for our dog, Jack. I decided to go with her but didn't go to the end of the store has it would have been waaaay too far for me.

We then went and ordered a take-away and had that around 8pm. After I had my supper, I decided to go and get changed into my PJ's. I asked my mum to pull the Ugg Boots off my RSD leg but she couldn't, my leg was stuck in them!! It took us 1 whole hour to get the boots off. My mum wont allow me to wear them again now but they are so comfy, apart from when I try to get them off which is another story altogether!! When we eventually got the boot off, my mum noticed that my foot had swollen a lot more than usual so that was why I couldn't get them off!!! Needless to say, my pain was REALLY high after that!!!

It was a long and eventful day and I am so ready for my rest today!! ...

Grrrr, Pain Flare

2008-11-09T08:38:00.000-08:00

Grrrr, I am in a pain flare at the moment!! I'm not sure what the heck has caused this flare but I suspect it is a delayed reaction from when my Physio's and Orthotic Doctor was manipulating my leg, trying to get it to go into the splint.

Friday night, I was sat down on the couch when all of a sudden, a huge, sharp pain came in my hip. It was so bad that I was crying in pain. What made it worse I think was the fact that I don't normally have any pain in my hip, the pain is just to my knee and also I didn't get any warning what so ever, it just came on straight away. My mum gave me some Ketamine to see if that would help but even that didn't work and it didn't even make me all giddy like it did the first time. When my pain gets too much, I pass out which is, according to my doctor, my bodies way of trying to cope with the pain. I have passed out a few times this afternoon and it is a scary feeling.

The pain in my hip feels has though my muscles are cramping a lot. My mum massaged the area that is tender yesterday and she said it felt like there was a lot of "knots" in it. I'm not sure if it's the RSD spreading up my leg or what, all I know is it hurts a whole lot!!

Hopefully it will be better for tomorrow, if it doesn't I am going to speak to my PM Doctor and see if he can suggest anything.

Pain, Pain, Go away.....

My First Day at the New School Centre

2008-11-07T08:27:00.000-08:00

Today was my first day at the new school centre. Everything went fine, although I was really exhausted afterwards but that is only to be expected!!

All of the other children and staff are really nice, helpful and friendly. When I was going into the centre, all of the children shouted "Hi Alison, How are you today?", it was so strange has I got a better reception from them than I did from my so-called friends that I have known for years!!

Today was a "Getting to know you session", the teachers asked us all lots of questions that we all had to answer so that we knew a bit about eachother. There are only 6 other children at the centre although a new boy is starting this coming Monday. After we got to know eachother, we all sat down and read the local newspaper. This I am told is something that they do every day to make the children have a better understanding of what is happening near us.

After we read the newspaper, we went and did some work. The teachers asked me to do a Coat Of Arms and to do some drawing. After about half an hour, we then all got to have a break. We were allowed either tea, coffee or hot chocolate and toast or buscuits free of charge!! You don't get that in school!!! We had about an half an hour break and then we all returned back to doing out Coat Of Arms and then stuck it on the wall. Seeing has it was Friday, the teachers allowed us to have some free time. Lots of the children went into the gym but me and another girl that couldn't do sports has she has ME played the game, Guess Who which was nice. We also had a good chat to oneanother.

The teachers wanted to introduce me gradually into things so today, we didn't really do much work and writing. One thing I like about the centre is that all of the children treat eachother equally and don't judge oneanother. Even when my leg was really badly shaking, non of the other kids sat and stared and laughed at me - it was sort of like they had been told what to expect.

On Monday a women is coming in to help us with our Self Confidence. I have always been really shy but since developing RSD it has took a real beating and gotten worse. Hopefully the women will be able to help me, she is coming every Monday for 40 weeks to work with us all and do a course. At the moment, I am only going to the centre Monday's, Wednesday's and Friday's so that I can gradually ease into things and get a break inbetween sessions.

I'm going to go rest has i'm tired but overall it has been a good day (except the pain and spasms but we wont go there just yet)....

School Stuff

2008-11-05T06:09:00.000-08:00

We had a meeting this morning with my School. Me and my mum went to a centre around 5 miles away from where we live to see what it looked like and also if I would be able to go there and do my work instead of having to go to school.

The centre is really nice and pretty big. They have several rooms including a kitchen, computer room, indoor gym, tables to do your work etc. It is set out like a school but it is all in one building so you don't have to walk. The staff there were also really nice and friendly and very helpful, the introduced us to the kids and they seemed really nice and friendly.

After discussing things, the teacher said that if I wanted to go there that he couldn't see a problem and that I could start straight away if I wanted!! I couldn't believe it, I was so shocked!! We spoke some more about things and eventually decided that it looked really nice and that I wanted to go. I start this coming Friday ... I can't believe it!! I am so nervous and excited at the same time, it's surreal!!

The teachers were really interested in what was up with me and we explained a few things to them and they said that they would work around me and if I don't feel well on a particular day, that is fine, we just have to call them and let them know. If I don't feel well and start to feel better after a few hours I can also go in a bit later if I wanted to.

At the moment, I would just be going to the centre on a Monday, Wednesday and Thursday so that I get a rest after and so that hopefully I wont end up in a major flare. The centre can arrange for a taxi to pick me up from my house free of charge if we wanted but at the moment, my mum will be taking me there and back until I get used to it. There's only about 10 kids that go to the club and 3 staff so I will get a lot more one-to-one work than I do at school.

The teachers explained that we could either arrange it so that the school send me work, which would be fun has it took 6 months for them to send me any work or I could drop out of school and they would set all of my work. My mum feels that it's better if I drop out of school and allow them to arrange my subjects so that is what we are going to do, for now anyway. The money also goes straight to the centre so at least it isn't going to the school.

Wish me luck for this coming Friday!! ....

Today is Bonfire night so we are going to see some fireworks later although I will only be staying in the car. It should be fun though!!

Today's Appointment

2008-11-04T06:15:00.000-08:00

I had an appointment today with my Neurologist. Before I went to see my Neurologist, I was supposed to go to my Children's Hospital to see the Orthotics Doctor to collect the splint for my leg. The traffic was really bad on the way to the hospital (probably the worse I have seen it), so we ended up missing the appointment. Because we missed the Orthotics appointment, we had to wait about an hour for my Neuro appointment so we ended up having to go into the Starbucks near the hospital for a smoothie (yum!). My mum was really not happy about missing the appointment. We are going to have to see if the Orthotics can take the splint to my Physiotherapy session on Thursday; I really hope they can.

After enjoying a nice smoothie in Starbucks, we went to see my Neurologist. My Neuro is really nice, I saw him before I was diagnosed with RSD and he was the Doctor that recognised my condition and got me a referal straight away to my PM Doctor. We went to see him about the really bad, myoclonic spasms in my leg. The last time we saw him (back in June), he said that if the spasms didn't settle down any, he would prescribe me a med called Keppra which is used a lot in people with MS or Epilepsey. My Neuro took a good look at my leg and noticed straight away that the Dystonia (foot rotation) hadn't changed any. He said at this moment in time, he doesn't want me to try and other medications as they could potentially make me worse.

My PM Doctor said that it might be an idea to use Botox in my leg to try and get rid of the Dystonia so we spoke to my Neurologist about it and he said that the best person to see would be an Orthopaedic Surgeon however he thinks that because of the complications I have had from the 2 nerve blocks I have had, the Botox could make me worse or send me off my balance. He explained that the Botox could paralyse the muscle that is working overtime, but it could make the other muscles in my foot worse or weak also. He said not to dismiss it completely but if we do decide to try it to give it some serious consideration.

The spasms in my leg are a lot worse than they were when I first finished the Physio program in July and my Neurologist thinks that that is because of the flare of the RSD in my arm. He feels that my body is reacting to the pain in my arm by causing something else to happen (nice, huh?!)

I have to go and see my Neuro again in March or April next year however if the spasms don't settle has my arm gets better, we have to get straight back in touch with him to see what he can suggest to try and help. My Pain Management Doctor also keeps in touch with him a lot so he will keep him updated also. My Neuro feels that the best thing to do at the moment is to continue doing my exercises at home on a daily basis and also go and see my Physiotherapists every week.

For those of you that haven't seen the spasms in my leg, here's a video ... http://www.youtube.com/watch?v=xIXakErNBpE
http://www.youtube.com/watch?v=qE_OwuilOew

Have to go and rest has my arms hurting a lot ...

Sooo Tired!!!

2008-11-03T02:24:00.001-08:00

I am so tired. I haven't slept at all all weekend and I feel so drowsey and groggy. I think I can't sleep because of the pain and also because I can't lay on the side I like to because of the pain in my arm.

I really hope I can sleep tonight has we have a busy day ahead of us tomorrow, I have to be at the hospital for 9.30am (and I am not a morning person!!) to collect my splint and then at 10.20am, I have to go and see my Neurologist about the Myoclonic Spasms in my leg. The spasms are coming back a lot worse than they were when I finished the Physiotherapy program now, i'm not sure why. Hopefully my Neuro will have some answers.

Must go and rest .....

Ketamine

2008-10-31T05:46:00.000-07:00

When I saw my Pain Management Doctor on Wednesday, he prescribed me enough Ketamine to last about 7 days to see if I got any pain relief from it.

I took my first Ketamine last night because the pain in my leg and arm was really bad, probably because of the bad weather that we are having at the moment. I took 30mg of Ketamine which is the dose my Doctor suggested.

Within about half an hour of me taking the Ketamine, I felt really funny, as though I was really drunk (i've never been drunk but that is the closest thing I can relate it to). I was laughing at every single thing, even though it probably wasn't funny!! The Ketamine took my pain from an 8 and half on the pain scale to about a 6, the oral Ketamine doesn't work as well as the epidural but I am thankful I got some much needed relief, even though I had the strange side effects!!

It was kinda scary because I knew what I was doing but couldn't control myself or stop myself from doing it. My Doctor said that Ketamine works in a similar way to the Date Rape drug and I guess he is right!!

Hopefully the next time I take the Ketamine I wont have those side effects has I think I was driving my mum a bit mad!

Brrrrrrrrrrrrrr!!!

2008-10-30T08:02:00.000-07:00

Brrrr!! You can really tell it is winter here!! It has done nothing but rain all day and of course, it has made the pain in my arm and leg sooo much worse!! It looks so dark and miserable outside and there is no sign on the rain stopping yet!! I am absolutely dreading the really bad winter months. Thankfully since I got RSD, we haven't had a really bad winter but according to the weather forecast (if you can actually trust it), we are in for a bad winter this year - yuck!!

London got some snow yesterday, my mums friend has gone with a load of kids and she said it was really cold!! Thankfully we haven't had any snow ... yet!!

Rain, rain, go away, come back ..... never!!

Family Argument

2008-10-27T04:18:00.000-07:00

We had a family argument last night. We have been having a lot of issues for about 18months now trying to get my grandparents to understand what RSD is and show that they actually care.

I wasn't involved in the argument thankfully, but it was about me. My dad went to go and see my grandma and grandad (his mum and dad) last night and he said all they talked about was their friends and the rest of our family. It took my grandparents half an hour to ask how I was and my dad said "Oh, eventually you do ask how Alison is!!" My nanan said "Well, what can we do to help, there's nothing we can do" so my dad turned round and said to her "It doesn't hurt you to call and see how she is, you know that she is in a major flare and have never once asked how she is", my nanan then made some sarcastic comment so my dad walked out of the house and slammed the door!!

When my dad got home, he was so mad with them. I knew he was upset but never thought he would say anything to their face, he is like me, it takes him ages to say something to someone. I have mixed feelings at the moment, half of me is sad that it had to come to that but the other half of me is relieved that my grandparents now know that I am upset with the way they have been treating me.

The ball is in their court now, it's up to them to get in touch with me. If they don't get in touch at least I will know where I stand.

It is so awful that this monster of an illness can destry families like this. Me and my grandparents used to be sooo close and now look at us ....

Sick of All this Pain

2008-10-25T03:16:00.000-07:00

I am really sick of all this pain now. It was bad enough having constant pain in my leg but now I have it in my arm even the simpelist thing like getting dressed is a huge challange and REALLY painful.

The pain in my arm is the worst it has ever been and it feels has though my arm is going hypersensitive. The pain doesn't feel like RSD pain but then again it never did, it feels as though my bones are aching and I have pins and needles in my fingers sometimes. I tried getting in the bath tub yesterday and the pain was unbearable, it felt has though someone was pouring petrol all over me.

I have been so close to going to hospital and having it checked out but my PM Doctor says it's just RSD and I don't want to waste the Doctors time when they have patients to treat that are worse than me...

OUCH!!

2008-10-21T04:33:00.000-07:00

I really think my arm is going into another flare. Over the last few days it has been hurting quite a lot and yesterday I noticed that the area near my wrist was coming out in a big bruise. Whenever I press on my arm, I get a really sharp pain.

I don't know whats causing this flare; the weathers quite nice, I haven't knocked or injured my arm, in fact I can't think of anything that I have done that could of caused it to flare, the only thing I can think of is stress. Who knows?

I always have pain in my arm but usually it is just mild thankfully (about a 2-3 on the pain scale), today it is more like a 4-5 - thankfully it isn't as bad as my leg though!!

It's like my body always seems to know when I have something important coming up as I always end up in a flare!! I am going to do my exercises, keep moving my arm as best I can and hopefully it will improve soon!! When I go in hospital tomorrow, I am going to ask the Anaesthatist (sp?) to put the canula in my good arm, rather then risk making things worse (my RSD doesn't agree with needles what so ever, when I had the nerve block, I lost my balance and co-ordination and when I had the Ingrown Toenail removed, I ended up with severe spasms from my hip). The good thing is, I am seeing my PM Doctor and PT's tomorrow so hopefully they will be able to take a look at me and give me some advice.

Have to go for now, typing is hard and very painful!

The Start of Another Week!!

2008-10-20T03:59:00.000-07:00

I can't believe it's the start of another week already, this weekend seems to have gone so fast and I haven't even been out of the house!!

The only thing I have done this weekend was watch TV and spend some time on my laptop, I didn't feel like doing anything else and figured that I needed to rest and try and take care of myself for once. I love Sunday's on the TV has my favourite Soap program is on; Hollyoaks. It is a really good English program and I absolutely love watching it!!

I am not feeling too well today, I am having a high pain day and have quite a lot on my mind. I think my arm is going into a bit of a flare again has it is aching a lot today and starting to bruise a bit near my wrist. I am going to do some of my exercises on it so that hopefully it doesn't get any worse. My mums allowed me to take the day off School today because she could see I wasn't feeling too well (I looked really pale) and thought it was better that I try and rest for my procedure on Wednesday (I am so nervous!)I can't concentrate properly today so going to School would just have been a waste of time ... Hopefully I will feel well enough to go tomorrow.

I am so nervous about my upcoming procedure this Wednesday, I think my mum is too. Every time I go to have a procedure, even if it is minor something always seems to go wrong and I come out with some kind of complications. Hopefully this procedure shouldn't cause any complications because they are not (hopefully!) injecting into my RSD leg, they are just going to manipulate my leg into a natural position and then make a splint. Still, I can't help being nervous, I think it is normal with this illness to be scared about things. I am trying to stay positive and hope that the splint will work, if it doesn't I have to have a full leg cast put on in January and I really don't want to go down that route unless we have to.

I am going to rest now has I don't feel well ... wish me luck with my procedure this coming Wednesday (the 22nd)!!

Another Week's Over!!

2008-10-17T13:11:00.000-07:00

Well, another week is over thankfully. I have all the weekend to relax ready for School again on Monday. The Weekends seem to go really fast but the School week just seems to go really slow!!

I took the day off School today has I wasn't feeling too good. I didn't get any sleep what so ever last night because of the pain in my leg and tooth - I was sat up on my Laptop at 3am English time!! Because the pain was so bad, I took a couple Tramadol's hoping that they would at least make me sleep but they didn't!! They used to always make me sleep so I can't figure out why they wont knock me out now ... I guess my body has just got used to it.

My mum recieved a call today from my Pain Management Doctor's nurse - I am going into hospital this coming Wednesday (the 22nd). I will be taken to theatre, have my leg manipulated and then a splint moulded to the shape of my foot ... the splint will then take about 2 weeks to make. Thankfully I am just staying in for the day - we have to be at the hospital at 8.30am and I am going to the Operating Room at 9.30am.

Even though I didn't go to School today, I still had my Home Tutoring. I didn't really feel up to it but I don't like missing so much School Work. My tutor came this after for about an hour and did some Math and English with me. In Math we are doing Algebra - I can't figure out how to do that at the moment but I have only just started doing it so hopefully it will sink in soon!! In English, I had to read a poem and then answer lots of questions about it which was pretty easy!! My mum emailed my teachers at School and they have arranged for me to do some ICT (computer) work at home, I am pretty good on the computer so hopefully I should be able to do everything that I need to do!!

I will only be at School 3 days at the most next week has Wednesday I am going into hopspital and Friday is a teacher training day. We are then off for a whole week for October Half Term. That should be nice has I will be able to have a break from everything!!!

I really hope I can sleep tonight ...

Dentist Appointment

2008-10-16T10:51:00.000-07:00

I had a Dentist Appointment today. The Appointment REALLY hurt! The Dentist gave me a lot more aneasthetic then he would in a normal patient has having spoken to my PM Doctor he said that with most of his RSD patients he suggests to use more aneasthetic to try and combat any side effects or reactions. The Aneasthetic didn't take unfortunately. The Dentist was going to just give me a filling but explained that the tooth is a lot more infected than it was a few weeks ago when I last saw it. The Nerve in my tooth is exposed into the air (Hence the reason why I have been in so much pain) and the Dentist had to keep sticking needles into my nerve - that really hurt and I nearly shot through the roof!!

My Dentist explained that because my tooth is so badly affected, I have to have a root canal (I am really dreading that!!), he explained that he would of extracted the tooth but he wants to try his best to save it if he can. My Dentist could see how much pain I was in so he has just cleaned the tooth and dressed it and also put a temporary filling in. I have to go back in 3 weeks for another filling (my teeth seem to chip very easily since developing RSD) and then I have to go back about 3 weeks after that to have the root canal.

My Dentist wanted to see how I react to this aneasthetic before doing anything else because of me having RSD. Hopefully the pain will settle down soon - I have just took a tramadol and it seems to be helping with the nerve pain in my tooth a bit (I just wish it would help the pain in my leg!!)

It's all fun to say the least ...

One for Wednesday

2008-10-15T05:53:00.000-07:00

My mum allowed me to take the day off School today because i'm not feeling too well. I haven't been sleeping at all for the past few nights - last night I was sat on the computer at 2am talking to one of my RSD friends from the forum, Lauren (thank you so much Lauren for keeping me company!!). I have tried everything to try and make me get to sleep but nothing seems to be working at the moment. My nurse in London was supposed to be speaking to my PM Doctor and getting back to us but she never got back in touch and she said she would be in touch last week!

I emailed the School Psychologist last night to keep her up to date with how I have been getting on at School and also to share some of our concerns. I love my School Psychologist as she is really nice and helpful - she was the person that made me want to become a Psychologist, I just wish I got to see her more - I only see her about every 3 months but I can email her whenever I need to! She got back to me almost straight away and said that she is going to our School tomorrow so she is going to speak to some of my teachers about some of the issues that we are having to see if they could get anything changed to make things a bit easier for me. I told her most of the problems that I am having at School such as teachers not understanding, my friends never coming when they are supposed to, homework, noise affecting my pain levels, walking from lessons to lessons and the chairs in Science hurting my leg too much. Hopefully we will be able to get things sorted a bit better soon. My Psychologist is really good so I am hoping she will be able to get my teachers to make some changes that may help!! I will keep you all updated when she gets back in touch with me.

My mum spoke to her boss at work today about a Club that the Youth Club works for called 'Anxious and Phobic' or something like that. She spoke to someone at her work about it yesterday and they said that I wouldn't fit in however her boss said that it is quite a good club and that most of the children there are really nice and friendly. The Club runs 4-5 days a week for 3 hours per day and most of the kids that go there have some issues about school such as, they have been out for a long period of time and having trouble getting back into the swing of things (like myself), are being bullied, dislike school etc. I emailed my Psychologist about it to see what her opinion is. I really want to go to school but I just don't think it is going anywhere near as well as we expected it to...

My mum has the workmen in today. They are building an extension for us so that I don't have to keep going up and down the stairs whenever I need to use the toilet. The Builders have accidentially cut into the main water pipe for the whole of our street so no one on our street has any water now!! When the Architect drew the plans, he didn't put where the main water pipe was! The Builders are now 2 days behind schedual as a result!! I hope we can get things sorted soon!! The Workmen will be working on our house for about 10 weeks, my mum is also having a new Kitchen so they are fitting that for us.

I am pretty stressed today. I have so much going through my mind that I am fit to burst!!! I went to see my grandparents yesterday to give them the letter that Felicia had so kindly wrote for me (thanks so much Felicia!). My granparents NEVER asked how I was or anything, when I told them how I was doing, they would change the subject straight away. It really annoyed me. I didn't say anything to them face-to-face, I just gave them the letter, explained a little about Felicia and then left. The minute I got into my mums car I burst into tears, my grandparents just don't understand anything! I was crying for a good few hours. I really hope the letter will make my grandparents understand and make them open their eyes but if it doesn't, Felicia and myself tried our very bests so there is nothing else we can do. They haven't gotten back in touch with me yet, I figured that i'd give it a few days to let it sink in as it may come as a bit of a shock. If they don't get in touch then I will go and see them and tell them exactly how I feel and try my best to move on.

It wont be easy but sometimes it's better to try and move on...

I have to go to the dreaded Dentist tomorrow - yuck!! I have to have a filling and then I have to go back 2 weeks later to have yet another filling and a tooth pulled out. I have absolutely dreaded going to the dentist ever since developing RSD - it just scared me!!

Wish me luck!!

School and Home Tuition

2008-10-14T03:19:00.000-07:00

I have just got in from School and I am soooo tired, I haven't been sleeping well at all over the last few days and that in itself is stressing me out. I came home from school about 30 minutes early because I was so tired and non of my friends turned up at Break again to sit with me. My friends are supposed to have a Pass which means that they can come and sit with me every break, I tell them to meet me in the School's Reception but they never do for one reason or another. I always knew that getting back into the swing of things with my friends would be hard but I think it's a little bit unfair that they don't come and sit with me when they are supposed to!

Today in School I had Geography and Science. The Teachers wanted me to go upstairs for Geography but I told them that I couldn't because I was wobbling all over the place even with 2 crutches!! I ended up working in the School's library and a teacher came and sat with me. We have a Science exam coming up soon which is pretty important has it dictates what sets we will be in next year at School.

My mum is talking to her boss at work today about a group that the Youth Club run called "Anxious and Phobic" or something like that. The group has about 6 children and runs 4-5 days a week for 3 hours a day during school hours. Most of the kids that go there have either been out of school for a long time and having difficulty coping with going back to school (like myself), are getting bullied at school, don't want to go to school or are scared of school for one reason or another. The Club is set like a proper School setting and you get a lot of one-to-one work which I think would be useful. Don't get me wrong, I want to go to school but we just feel that it isn't going as well as we expected, I am finding it stressful and most of my friends don't understand. Hopefully that club would alow me to still get my studies done and socialise with people who understand.

Yesterday my Home Tutor came to help me with my Homework so that was a bit off stress off my shoulders thankfully!! I like my tutor has he explains things really well unlike most school teachers! He is coming again tomorrow to help me.

I better go and take a nap now, I am so tired!!

Physiotherapy (PT) Appointment

2008-10-10T02:04:00.000-07:00

So yesterday I wasn't feeling too good but I had to drag myself out of bed to go to my regular Physiotherapy Appointment.

It was an absolute nightmare trying to find a parking space! The hospital that I go to is really big but it only has about 25 car parking spaces so you always end up having to park a long way away!! Thankfully we have the Blue (Handicapped) badge so it means we can park on the road! The appointment itself went OK, although it was REALLY painful! The Physio's mainly did a lot of talking with me about how I have been getting on at School, what sort of exercises I have been doing etc. I exlained to them that I have been struggling a bit with School and that when my pain gets really high I have difficulty concentrating and find myself staring into space.

One of my good RSD friends, Felicia (the girl who sent the lovely fridge magnets for me) said to try a TENS Unit has they can help take the edge off the pain and that maybe it would reduce my pain to a more "toleratable" level. Myself and my mum spoke to the Physio's about the TENS Unit and they explained that they don't use it that often in RSD patients but they have read some research articles that states that it can sometimes reduce the pain. The Physio's said that it was a really good idea and that my PM Doctor had just purchased some TENS Machines so hopefully we would be able to borrow one of those. The Physio's said to experiment with the TENS at first to find out where it works the best but NEVER to put it directly onto an RSD limb. I think that I am going to give the TENS another shot, it can't do any harm and it says that it is really safe to use!!

The Physio's are hoping that on the 22nd October I will be able to go into hospital to have a splint moulded and my leg manipulated under general anaesthetic. My mum asked the Physio's if I was definitiely going into hospital on that day but the Physio's explained that they weren't sure has they wont know until next week if the Operating Room is available. Because I am not having an operation has such (I am just having a manipulation) it may be that someone else has to take my place if there's is an emergency. We will probably know next Friday if I am able to go into hospital on that date.

The Physio's did a lot of different exercises on me, I had to do some Bridging which is where you have to bend your knees and lift your bottom up, that is really painful!! The Physio's wanted me to try and do some Bridging just putting weight through my RSD limb but that was waaay too painful and I kept falling all over the place!! My Physio's got me onto the cross trainer (it's a bike where you sit and peddle - similar to a normal bike) has they wanted to see if I could apply any weight through my RSD foot. The only place where I was putting weight was through the ball of my foot - the straps on the bike were really hurting my legs and now I have a load of blisters (my skin breaks easily because of the RSD).

I don't have any Physio next week as we can't make the appointment that was available but I have been given a load of exercises to do!!

I'm still not feeling too good today so my mum allowed me to take the day off school - I hate missing school but I would rather stay off and take it easy than push myself too hard and end up in a massive flare!! I haven't been sleeping very much so I don't think that has been helping either has I am just physically exhausted!

Not Feeling Too Good

2008-10-09T04:13:00.000-07:00

I'm not feeling too good today for some reason. I am soooo tired has I haven't been sleeping that much over the last few days because my pain and spasms have been really bad. I just wish I had something that could help, even a little with the pain. I have come off all of my medications has they weren't helping me and the side effects were pretty bad. My mum spoke to my PM Doctor and he said that the only medications left for me to try were either Ketamine and/or Methadone but he doesn't want to put me on those unless he has to because of my age and hormones etc.

My mums allowed me to take the day off school has she could see how much pain I was in, it's not that often I complain so when I do my mum knows it's pretty bad!! Hopefully the school will understand, they can't expect me to go to school all the time, it is just way to much for my body right now. Hopefully I will feel better tomorrow, I hope I will has I have a stack of tests coming up that I need to do.

I have my regular Physio (PT) appointment this afternoon, I don't really feel like going but I need to go as we need to find out if I am still going in hospital on the 22nd October for the splint moulded whilst I am asleep.

I really hope I can get to sleep tonight and feel better for tomorrow, I HATE feeling like this!

School and Home Tuiton

2008-10-07T11:33:00.000-07:00

I went to school for 2 hours today. I am so tired now, I really hope I am able to sleep tonight!!! My leg is really aching, even though I have to use crutches my leg still hurts a lot, whenever I try to put any weight through it I get a really sharp, bad shooting pain.

I had Science and Geography today at School. In Geography we are learning about the Digestive System which is really interesting, I love Science and it is my ambition when I am older to become either a Psychologist or a Physio (PT). This disease has really opened my eyes and made me want to help others who are in the same situation as me. In Geography we had to do a test and I found it really hard!! I have a lot of difficulty concentrating and forget things really easily. Half of the questions in the Geography test I didn't know as I was out of school for almost 2 years!!! I spoke to my teacher and told him that I didn't know any of the answers because I have been out of school for a long time and he just looked at me stupid - he is a new teacher so doesn't understand what is the matter with me!!

At Break I was supposed to go outside with some of my friends to socialise but my friends didn't turn up!! I was sat in the School's Reception for 40 minutes on my own!! I saw the Disabillity Teacher (she looks after me) and she asked if I was OK, I told her I wasn't too bad but that my friends hadn't come for me, she said that she would go and find them but she never came back!! I really hope that the "newness" of me going back to school isn't wearing off now and that my friends are still going to help me.

Whilst I was waiting for my dad to come and collect me, I saw my Math teacher and she told me that I got a level 4C in a test that I did!! I am so proud of myself as I thought I did soooo well on the test as I didn't answer that many questions!! My teacher explained that the level I got was what most of the other kids got and they haven't been out of school for nearly 2 years!!

After school I was really exhausted so I came home and had a nap, I never realised how tiering school is!! This afternoon my tutor came to help me with some things, I really like my tutor, he is more of a friend than a teacher!! He did a lot of Algebra work with me, I find Maths really hard because of my Dispraxia but my tutor finds ways to try and work around that which is good. He is coming again tomorrow to help me with any homework that I have .... I have a lot of it!!

So Tired and stressed!!

2008-10-07T03:49:00.000-07:00

I am sooooo tired, I didn't get any sleep last night what so ever due to what happened on the Forum, it was stressing me out way too much - I know I shouldn't let it get to me but it really has. I just can't believe that someone could be so rude and say something like that to me and the others!

My mum's just emailed me and told me that she spoke to the people at work about what was said on the forum yesterday and they were absolutely discusted. Where my mum works is a Youth Club and it has a lot of computer experts there so my mum asked if there was any way we could ban the person that said those rude things about me from the forum forever. My mum's friend knows quite a lot about computers and he has shown my mum a way to ban her from the forum forever - hopefully that way I wont be as stressed out and the forum will be a safer place to be!!

What is it with Some People?

2008-10-06T15:47:00.000-07:00

What is it with some people that no matter how hard you try, it still isn't good enough?!?!

As most of you know myself and Wendy (a really good friend of mine with RSD) run a forum together called 'RSD Friends' along with several other RSD'ers. We have tried our very best to make the forum as safe and relaxing as possible but today I got a REALLY abusive message from a member of the forum. I had emailed this member as myself and Wendy had noticed that she spent a lot of time "lurking" on the forum but didn't actually contribute or make any posts. I therefore emailed her and told her to either stay posting or she would be banned from the forum, I didn't say anything nasty what so ever. Within about 10 minutes of me sending the email, guess what? A message appeared on the forum from this member! At first I thought, Oh good, she is finally deciding to post but then when I went and read the message she had written I was absolutely appauled by what she said!! Let's just say that there was a LOT of swearing in the message, nearly every other sentence had nasty words in it. This person knew for a fact that I was a teenager but said that I thought that I was f**king God and I thought I was so clever and this that and the other just because I run my own forum!! I in NO way think I am God, I am just simply trying to help others with RSD, what is wrong with that?

It's like no matter how hard you try, it still isn't good enough. If it wasn't for me, my mum, Wendy and Barb no one with RSD would have a forum to go to!! I am seriously thinking about whether to say "I have had enough" and just leave it. No matter how hard we try it still isn't good enough...

Aaargh - Homework!!

2008-10-05T12:26:00.000-07:00

I have soooo much Homework to do for tomorrow and it is already 8.30pm in the UK!! I have finished doing some of my Homework but I still have my English, Math and Science Homework to do!! I started doing some of my History Homework earlier but somehow I ended up doing my English homework on the same sheet of paper!! I really don't know how people with RSD go to work and school full time - I am stressed already and I am only going for 2 lessons a day!!!

I never imagined that School would give me so much Homework to do when I have been off school for nearly 2 years and am only just starting to return back!! My teachers said that they wanted to make things as "Stress free as possible" for me, Um yeah, it really looks like they are doing that!! I think that we need to tell my teachers that all of the Homework is stressing me out too much, hopefully they will understand and allow me to take things easy.

I have my SAT's (important exams) at the end of this year so I really need to try and concentrate but I just can't keep my mind on things and keep forgetting everything which is way too stressful.

Hopefully we will get things sorted - I hope so, I really hope so!!

Understanding Chronic Pain

2008-10-05T05:57:00.000-07:00

I, like most people with a Chronic Pain Condition, have been having a lot of trouble trying to explain to people just how bad RSD pain is and that it is the highest pain known according to the McGill Pain Scale. Because people can't physically see pain, they can only see the side-effects of pain, they don't truly understand just how bad it is. I usually get a lot of comments off people such as "It can't be that bad", "But you look so well!!" etc.

When I saw my Pain Management Doctor just over a week ago, he asked me how bad my pain was, I told him that it was really high and that it was an 8 on a pain scale of 0-10 (0 being no pain, 10 being the worst pain imaginable). My Pain Doctor then said something to my mum that I find REALLY true. He said, "When you hit yourself with an hammer what do you do"? My mum replied "Well I jump, scream and cry!", My PM Doctor then said "Well imagine having that sort of pain but worse and it doesn't go away, what do you think you would do?", my mum then replied "Well .... I would probably get used to the pain and it wouldn't seem quite as bad", My PM Doctor then said "Exacly, the pain that Alison (me) is in is that bad and has been there for so long that her body has kind of got used to it and that it just seems normal to her", he then went on to explain that it is physically impossible to jump, scream, shout, cry and yell because of pain and that after so long your tolerance to pain gets better.

What my Doctor said really made sense to me and my mum found it useful also. My mums been telling everyone that doesn't understand RSD the way my Doctor explained it and most people have said "Oh Yes, That makes sense, I never thought of it like that!!"

From now on, whenever someone doesn't understand what RSD is like, I am going to explain to them what my Doctor said.

Will it help make them understand? I don't know but i'm on a mission!!....

When Will I Be Normal Again?

2008-10-05T05:42:00.000-07:00

When Will I Be Normal Again? That question has been on my mind for a while now. Will I ever be normal again? Will I ever be Pain Free again? I try my best not to think negatively about my life right now and try my very best to have a positive outlook on life but I must admit that it is getting harder and harder. I think all of the additional stress from going to school really isn't helping as it has set my pain levels up a lot. 'Normal' people just don't appreciate and understand how much effort even the simpliest task is with RSD. I try my best ... I really try my best

But...

I WANT to have a Pain Free Life
I WANT to do all of the things that 'normal' teenagers do
I WANT to be able to go to school without using Crutches or a Wheelchair
I WANT to be able to concentrate properly
I WANT to be able to walk normally
I WANT to be able to Run
I WANT to be able to play Sports
I WANT to be able to remember things
I WANT to be able to wear proper shoes

I WANT a lot of things but right now it seems as though I will just have to wait and make the most of my life. I can't just sit here and not do anything, I have to try my best and get some 'normality' back into my life.

I guess today is just one of those bad days. I am just sick of being like this.

My Baby

2008-10-04T11:03:00.000-07:00

That sweet little picture above is a picture of my baby, Jack!! Jack is a Black and White English Springer Spaniel. We got him on the 16th October 2007 when our beloved dog, Ben died of cancer. I can't believe we have had him nearly a year already!! Jack never seizes to amaze me with what he can do and he always seems to bring a smile to my face even on those horrible pain days!! He seems to sense when I am having a high-pain day (which is nearly all the time) as he will come and lay down on my bed and just give me a cuddle - soooo cute!!

He truly is an angel!!

Return Back To School

2008-10-04T05:28:00.001-07:00

On Wednesday (the 1st October), I returned back to School!! I haven't been able to go to school for almost 2 years due to my RSD, Hospital Appointments etc etc. At the moment I am only going to school for the first 2 lessons of the day as I get tired VERY easily and when my pain gets too much, I have difficulties concentrating and forget things a lot.

The transition back into School went mostly OK. Because I need additional Support, I have been dropped down to Set 3 (the middle set) in English and the other Chore subjects where I should be in Set 1 (the top set). The Science set that I was put into was VERY mad, all the other kids seemed to do was run around, shout, fight, scream etc etc. My mum spoke to my teachers about it as the noise was sending my pain levels off the scale and it was just too much for me! Thankfully my teachers agreed to swap me into another Science Set, the Science class that I am now in is sooooo much better and a LOT less noisy! I had forgotten just how noisy school is!!!

On Thursday, I went into Form (that is where we have to go to get our mark) and there was no seats left, the only seat that was left was next to my "friend". My Form Teacher asked my "friend" if I could sit next to her so that I could take some pressure off my leg as it was getting really painful and my "friend" replied "NO SHE CAN NOT SIT NEXT TO ME!!", I couldn't believe it when she said that and it upset me!! This "friend" of mine is somehow jealous of the treatment I am recieving, she thinks that she has RSD and when I was first diagnosed with RSD she would come to me and ask what the symptoms were, she would then go to her mum and say that she had the same symptoms as me!! She even went to see my Pain Management Doctor who said that she didn't have RSD and that she should stop faking it!! She says that she has RSD in her right knee, arm, back and teeth but yet she goes running around at school!! Who needs enemies when you have friends like her?!?! I am trying not to let what she said get to me as she isn't worth the time of day, the only thing that worries me is that she is one of those people who could cause a lot of trouble for you if she wanted to.

Most of my other friends are being OK thankfully although I do get the odd few who aren't interested and want to go and do their own things that I cannot possibly do. The thing that annoys me is those people that say "What is the matter with you? Why are you on Crutches? Why's your leg so badly rotated and why does it shake so much?!!" I know I had to expect that!!

Yesterday I had a Maths test and it was really hard! Half of the questions that I had to answer I didn't know anything about as I have missed so much school. I tried my best though so that is all that matters. My teacher said that they would take into acount that I have been off school for a long time anyhow. Because I have Dyspraxia, I have a lot of problems with Maths and need additional support and someone to help me.

After Break yesterday, I stayed for an extra lesson and watched the Shakespeare Play 'Romeo And Juliet', it was really good!! A Drama company had come into school to perform it for the whole of my Year Group. It was great has they had put a twist in the story and it had a lot more modern music.

I saw my Home Tutor yesterday after school as I have soooo much homework to do which is stressing me out!! I like my tutor has he is more of a friend than a teacher!! He is going to come again next week to help me with any homework I may have.

Here's hoping that I survive the next week in school!! My tutor said that I may have got by last week on adrenaline and that next week might be harder - I hope it isn't, I certainly don't need that!!

Thank You!!

2008-10-04T04:52:00.001-07:00

Today I recieved a parcel that one of my good RSD Friends, Felicia had sent through the mail for me all the way from New Zealand!! In the parcel were a lot of RSD goodies including fridge magnets, stickers etc!! I am going to give some of the things that she sent me to my friends and family so that hopefully they understand what RSD is and are more aware of the ilness! Felicia really is an angel and shouldn't have gone to all of the trouble of mailing that through the post for me - thank you ever so much Felicia, love you!!

She is also writing a letter for me to my grandparents as they just don't seem to understand what RSD is - I never realised just how nice people can be, this girl has problems of her own including RSD but yet she is out there wanting to help others - she really is an inspiration!!

Thank you Felicia!!

Physical Therapy Appointment

2008-10-04T04:35:00.000-07:00

I love that imagine, that is what I am like EVERY week During Physical Therapy!!

On Wednesday I had my regular, weekly Physical Therapy appointment. The Appointment went Ok although it was REALLY painful!! A few months ago, I really didn't get along with my Physical Therapists, I felt like they didn't listen to anything I was saying but that has really changed now thankfully and they seem to listen to EVERYTHING that I am saying and are also noticing things that I am not noticing.

The PT's said that my posture is really bad and when they checked my pelvis, they said that I had a load of knots and that I felt extremely tight. The PT's said that this was probably because of the pain I was in and that the muscles in my pelvis and hip could be spasming. They gave me a lot more exercises to do to try and release some of the tension in my pelvis. The exercises I have been given include Bridges (this is where you have to bend your knees, and put some weight through your feet whilst lifting your stomach up - that really hurts as I can't put that much pressure through my RSD leg!!!), Clams (this is where you have to bend your knees and then move them from side to side) and a load of others!!

The PT's also got me on the treadmil, I didn't really do anything, they set the treatmil to the lowest setting so I could try and tolerate it and all I had to do was try and walk. The PT's wanted to see how I was walking with my leg rotated out to the side so that they could see what they needed to focus more on. They said that I am putting most of my weight through my good leg (that makes sense as when I was on the WII Fit, it said I had 70% pressure through my good leg and only 30% through my bad leg) and that I don't seem to know where my centre of gravity is. They are going to try and work on that more during the next few weeks.

The PT's wanted to see if they could get the splint moulded onto my leg during Wednesday's PT session using just gas and air but they couldn't as the Orthotic Doctor was off sick. The PT's spoke to my PM Doctor and he said that I need to have my leg manipulated whilst I am asleep as it would be way too painful for me to have it done whilst I was awake. On the 22nd October, I am due to go back into hospital for the day and have my leg manipulated and a splint moulded onto my foot whilst I am asleep under general anasthetic. I should only be in the hospital for the day as it will take 2 weeks for the splint to make - yay!!

I will keep you all updated!

A Poem That I wrote

2008-10-02T04:52:00.000-07:00

This is a poem that I wrote a few weeks ago when I couldn't sleep due to high pain levels. I am trying to decide whether to give it to my grandparents, friends and other family members that don't understand what RSD is - I hope you all like it!!

Why wont you understand?

How can it be that just one day
Could change my life forever
Steadily growing, burning fire
Within me, leaving never

A life so full of friends
A family who'd unite
I hope they'd always be there
To help me win this fight

What started out so positive
Slowly fell apart
School and friends just disappeared
My family broke my heart

My pain is real and constant
Although others aren't so sure
Why should I have to prove to them
This monster has no cure

I sometimes wish I had the power
To let others take my place
To become me for just one day
And see the frustration on their face
Frustration that they cannot share
In normal daily life
Why wind and rain and sunshine
Cut through them like a knife

I wish my life was just like theirs
Without the need for help
Independance regained, my life restored
Without the need for help
Chronic pain is "secret"
A condition hid away
From those who chose not to look
One I choose not to display

My pain is real, forever here
A reminder of the cost
Of fate and events conspiring
Of my independance lost

Just because I don't look ill
Because i've come this far
Remember that it hurts to not
Ask me how things are
A simple word can mean so much
More than you'll ever know
To know you care, you're always there
Though I have still so far to go.

Small Introduction

2008-10-02T04:43:00.000-07:00

Pictured above is me, my Physical Therapist's, Occupational Therapist and Nurse. This photo was taken not so long ago when I gave my local Children's Hospital a cheque for all of their contiuned support in treating my battle against RSD. I am in the middle with the cheque, to the left of me is my Physical Therapist, Sam, next to Sam on the end is my PM's Nurse, Julie, to the right of me is my other Physical Therapist Suzanne and next to Suzanne on the end is Lydia, my Occupational Therapist.

My name is Alison, I am 13 years old and I suffer from RSD (Reflex Sympathetic Dystrophy) in my left leg and right arm. RSD is a rare, chronic pain condition.

I developed RSD on the 20th March 2007 when I was just 12 years old after I fell down some steps and sprained my left ankle. I was finally diagnosed with RSD in July 2007 by a Pain Management Doctor after 4 long months of things getting worse and worse as each day went by. When I was diagnosed with RSD, my PM Doctor performed a Guanethidine nerve block in hope that it would at least reduce some of my pain but unfortunately I suffered from complications from the block and developed severe balance and co-ordination problems (whenever I tried to walk, my leg would just through itself out in front of me and I would have to have my mom take me almost everywhere!)

In September 2007, just 2 months after I was diagnosed with RSD, my PM Doctor prescribed me a drug called Amitriptyline as I wasn't sleeping due to extreme pain levels but once again my body reacted to the drug and I suffered from a side effect of blurred vision. I wanted to try and stay as independant as I possibly could, even though my vision was blurry and I couldn't walk or stand on my own without support, so I tried to get out of the bath tub on my own. Unfortunately whilst I was trying to get out of the bath tub, I knocked my right arm and within 2 hours my arm had begun to swell up really bad, become painful and lock into a fist. My mom called my PM Doctor and he asked me to come and see him the next day and I got the news I was dreading - my RSD had spread to my right arm!!

Thankfully, my arm is a lot better than it was now although I still have some moderate pain and have to do a lot of exercises on it to keep it moving.

At the moment I am trying my best to stay positive even though it is hard at times and I decided to create this blog so that I can express my feelings and so that people can keep up to date with how I am doing!!