Hey Miss Ali,
I am happy that you are getting out and about. I know that when Lindsay is very active on one day, she has a difficult time the next day. I am happy that your boyfriend is good to you. That is great. But, sad about your friends, it has happened to Lindsay too. She has met many friends on line some with RSD and others through support groups and other areas. It isn't the same though. I know you stay positive and active, I was more upset over the doctor and his saying that there isn't anything else they can do for you. I can't imagine how your mom feels. She much feel so helpless. Well you know that if you can afford to come to the US and get treatment with Dr. K, my home is open to you. I respect you so much and care for you. I hope that College is a great experience for you my little friend. I pray that the adult doctors can help you. My prayers are with you always.
Love Sandy
Quote:
Originally Posted by ali12
Thank you all so much for the support, I really appreciate it!
I do try and stay as active as possible. I don't just sit in bed all day. I try and make sure I get out as much as possible even though it is extremely hard at times. My boyfriend is great. I've been with him over a year now and he knows about my RSD and understands that I have to take things easy. When I go out he always makes sure I have places to rest and he can now tell when I am having increased pain so makes me pace myself. He really does help. He doesn't make me do things that will make me worse. We just go to the movies and he makes sure I can move around when the pain gets worse, we go shopping and take things easy and I do try and go to gigs when I feel well enough, though this is getting harder to do at the moment. I often spend many days unable to do much of anything after going out but I think i'd be really depressed if I didn't.
My friends stopped seeing me when I became ill. It's been really hard. I went from being SO close to them to not seeing them at all. I have a few friends still but don't see them as much as i'd like. I'm hoping College will help with the social aspect of things.
Ketamine has been mentioned and I am currently on the highest doses of Ketamine I can take for my age limit. I get a little relief but not lots. Mum wanted me to try the Ketamine infusions but they aren't available over here in the UK. The UK's NHS system stops us from getting lots of the treatment that you guys in the US can get so it is really stressful.
My mums requested a second opinion as far as the back is concerned and I am hoping to get transfered to adult services hospital now to see if they could help more. I have got my appointment for the pain program and that is on the 22nd March. It's just the initial appointment with the doctors before I start but i'm hoping they'll suggest some things that may help.
Thanks again and i'll keep you all updated  |