Tuesday 28 April 2009

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!!!

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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!!!

4 comments:

Noveling Neurotic said...

Hey! I'm a fellow RSDer and I have a blog as well. First of all, I get totally what you mean about wanting a break over RSD!!! I broke my elbow a year or so ago and my only fear was that RSD would spread, the first time I'm ever had luck, IT DIDN'T! I also get what you mean with frustration with doctors, family, friends and teachers, I hate the huge ordeal created by people who can't understand. I also wanted to recommend a treatment, but the thing is I don't know if you have a program available or if you've tried one. It's an incredibly harsh PT program (I won't lie, it's TORTURE, but it works) with a "side of" cognitave behavioral therapy program. I had some, success with it and many have had tremendous with it. The program I am in is in Boston, MA here in the US...which poses a problem seems how I've gathered you live in England... It's just a suggestion. We should talk somtime though, for sure!!!

Love ♥ A fellow RSDer

RSDsux said...

Thank you for taking the time to read my blog and for suggesting a treatment - I really appreciate it!

I have been onto two intense Physical Therapy programs over here in the UK. The first one lasted 3 weeks and got me walking short distances unaided again and the second one lasted 2 weeks and didn't do anything for me. I also have Dystonia on top of the RSD so the doctors are kinda puzzled as to how to treat me case.

The PT's want me to come back onto the program again and they want to cast my leg for a few weeks. I really don't want them to do that as I know casting is a big no no for RSD!! My PTs at the childrens hospital where I go are now looking into other options to try and help as a last resort and want to try Botox but no doctor is willing to do it as I have had bad experiences from nerve blocks - I have an apppointment with my neuruologist tomorrow to discuss it though.

I'm sorry to hear that you suffer from RSD also, Katarzyna ((hugs))! I'm glad to hear that the PT program helped you a little though!

Take care and if you ever want to talk, I am here for you!!

Hayley Cafarella said...

of all the luck!! Sorry to hear about the extra stress and pain, it's never fun trying to accept that the beast has spread...I'm still in denial as soon as anything feels better for a little while! Good Luck for your studies, you are amazing just to keep it up xx

Lisa Moon said...

Hi, Ali,

Gosh, hon, I'm SO sorry to hear that things have been so rough! That sounds really difficult - two kinds of pain, right: physical plus the emotional part of worry about the spread of CRPS... ugh.

I'll be praying/hoping/wishing really hard that your arm calms down for you and soon.

Your college ideas sound so exciting and I think your ideas about career sound marvellous. If this path doesn't open, remember another one will likely appear! Keep your goal(s) in sight - I like to write mine down, colourfully and/or with pictures and put them up where I see them every day! I believe this positive reinforcement keeps you strong and on track, plus it helps draw the things you want into your life!

Like, when I wanted to move, I wrote down my criteria for a new place, names/locations of places I wanted to live and even pictures of the ideal locations! The one that came up wasn't the #1 on my list, BUT it came available FAST and it fit all my criteria... and turns out it is probably better in several ways to the one I thought I wanted the most!

All the best, keep those wishes in your sight!

<3 Lisa xoxo