College Course

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

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!!!

------------------------------------------------------------------------------------

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!!!

Physio Appointment and Decisions!!!!

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!!!!!

One of the Worst Weeks of My Life

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.

I think my grandparents are Finally getting it!!!

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.

Dentist Appointment

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 ...