Monday 19 January 2009

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

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!!

3 comments:

Hayley Cafarella said...

Trip to Vegas sounds exciting! I am very interested to hear how your RSD reacts to flying...hopefully it will react by quitting with its pain altogether...but that could be over hopeful :P
Don't let anyone stress you out about school, you have the rest of your life to change your mind as many times as you want
xoxo

RSDsux said...

Thanks - I will definitely let you all know how my RSD reacts to flying. I must admit, I am very nervous about flying with RSD but my Physical Therapist's are going to speak to my Pain Management Doctor to see what medications I need to take to try and prevent any flare-ups so hopefully that should help!!!

I'm trying not to stress about the meeting with school but it is really important and my future basically depends on these Options and my test results!!

Thanks again and i'll keep you all updated!

Gill Pyrah said...

Love the pictures.

I know its hard to enjoy your self on days out or holiday. Some times because of pain or just plain tirednes. A lot of people choose not to under stand, others find it eaiser not to. You carnt allways see RSD and as time goes on, you learn to hide the pain.
All so people think you are not grateful for there efforts and cost of trips ect. It is so hard some times to enjoy anything because of the pain. Keep smiling and try to enjoy the good days. Love Gill