Hey Ali,
Sorry to hear things are not going so well. I know how it is for you to give up. You need to get up and walk around, go to PT/OT talk to a Psycologist. There is no reason to say that there is nothing else they can do for you. Yes the pain program is where you need to be. Maybe College will help you along. I feel like maybe this is a tough love conversation, but you need to get into some water and move around, get up and walk around, don't stay in bed. You are 15 years old and have a full life ahead of you. I know how things are with a teenager, I have one at home just like you with RSD and now SMA Syndrome and Gastroparesis. It is hard, she likes to stay immobile too, but I have to push her to get up and move around. Yes, it hurts, Yes we both cry, but we also know that if she stays in bed the pain is horrible. Do you have your friends still hanging around? If so get out and do something with them. I know how hard that is, but you need to move and go take your mind off of this for a little while. What ever happened with the fainting spells? Also, you need to find a new doctor. Someone that say's there IS something else they can do for you. There is NEVER NOTHING that they can do for you. GRRR! That just makes my blood boil to hear that. What about Ketamine? Have they thought about that? Sorry, I am very frustrated for you right now. I love you Ali, and I hope that things are better for you soon. Keep your chin up...Get up and get moving, is it warm there right now? If so get a little bit of sunshine, that always help with sleeping. My love to you and my prayers as well.
Sandy
Quote:
Originally Posted by ali12
Hi guys,
I hope everyones doing well  ! I haven't been on the forum much lately as I have been busy so thought I'd take the time to update you all as to what has been happening with me lately.
In May I have my big school exams and officially leave High School. I am doing 2 exams in Math, 2 on English, one on English Literature and then some on ICT (computers). It's been stressful trying to revise for them. I have an home tutor at the moment as I am unable to cope with a school timetable right now. I have been getting good grades but he isn't so supportive when it comes to my rsd 
I had an interview at college last week and I have been told that I have got a conditional offer on the course I want to do providing I get the grades I need. I'll start that in September and can't wait ! I know it's going to be stressful but the tutors know about my rsd and have been supportive so hopefully that'll help !
As far as the rsd is concerned, things haven't been going too well. I'm in a lot of pain lately and am unable to do much of anything. Even laying for short periods of time hurts a lot. It's 4:50am here in the UK and I havent slept at all so far! Its really getting me down now! I had an appointment with my doctor a few weeks ago and was told that there's nothing he can do to try and manage the pain as I've tried almost everything so basically I'm going to have to cope with it ... Easy for him to say! He wants me to go onto a 3 week intense PT / Rehab program for kids again and he's hoping that'll help me seal with things better as I've been really depressed lately. Unfortunataley there's a long waiting list but I'm hoping it'll help.
Been told there's nothing much more they can do has really affected me! Not so long ago my Dr was hopeful that a pain pump would help and I had my hopes built up. I then developed back issues and am no longer able to have it done ... Seems to be one thing after another lately!
I hope you are all doing well. I'll try and update mode when I can and let you all know how my exams go. I think of you all often.
Take care
Alison |