Hey all.. I can't believe another year has gone by.. another anniversery...

I can't believe that I've now had this dreadful thing for 7 years.. it's so scary that time has gone this fast and that this time 7 years ago I was walking, using my arms normally with just the odd bit of joint pain and back/neck pain if I did too much (as in running a couple of miles after a full day of school).

I still can't believe what this has done to my life. I've been stuck in a wheelchair for 6 years, I haven't been able to feed myself in 3 years, I have struggled to eat and had times when eating is totally impossible for the last 3 years. My pain is not under control despite copious amounts of morphine and ketamine, dihydrocodeine, paracetemol, ibuprofen, tramadol, baclofen and diazipam nor are my spasms. I have frequent dystonic storms and have had several attacks of status dystonicus. As I sit hear with my microphone dictating this it makes me so sad thinking what that one fall has done to me. The RSD and dystonia even affect my face and mouth now, they blink all the time, make me look like I have a tic in my cheek, twist my tongue backwards.. I now have chest spasms, torso spasms and just PAIN.

I'm feeling really down because i can't believe it's been 7 years... at least 2 of those wasted having to lie flat in bed in a dark room.. I can't believe I'm 23 with the body of a 80 year old. I'm reliant for everything from eating to dressing to using my wheelchair to well....

But I've managed to go to uni and am doing well, I have the most amazing friends who are there for me 100% and a great boyfriend..

just sometimes you wonder

• what it would be like not to be in pain
• what it would be like to stand up tall and walk (I've grown 7 inches since going into a wheelchair! I'm now 6"1)
• what would have happened if I hadn't have got sick? would I be a qualified dr now?
  would I have the same personality? I mean, would I be "me"?
  probaly not.

Right, it's 4am and the extra morphine and ketamine mum gave me has just started to help so I'm going to try and get some sleep whilst I have a chance...

Add more later

all my love and pain free hugs

Rosie xxxxxxxxxxxxxx

My Dear Frooga,

I am sorry these lines find you in such rough shape.

For the past year, I didn't have a computer.

I have NOT given up researching.

HOPE is the only thing that kept me going.

Big Huge Hugs, Roz

Hi Frogga,

I really believe their is a Pathogen component to all this RSD HELL.


http://en.wikipedia.org/wiki/Pathogen

Me too.

You're an inspiration Frogga. I'm sure you'd rather feel great and do less inspiring but, hey, maybe that's coming. Surely there's something out there that will work for you.

Best of luck.

I wish I could wave a magic wand, or say a magic word, and presto chango you would be made whole again.

One thing you can count on is all your NT friends being here for you. I know these anniversaries can get us down because I also was thinking...oh man almost 9 years now. Seems like a life time of RSD when it affects us day in and day out.

I agree you are an inspiration, anyone that can maintain uni classes all the while battling this insidious RSD is a hero to me.

BIG

Hi Rosie,

I just want to say my heart goes out to you. 16 years old when you fell? That is really a huge loss to be so young and lose your health!. I'm so sorry. Some of us may have RSD longer, but were older when he got it (48 years old) and not have it so severe. I have it full body, generalized, but am still able to walk and only have one partially crippled limb.

I'm so grateful we have this forum to be able to encourage one another and listen and know others really listen to our expressions of pain. We are not alone and don't feel alone.
It's impossible to know what RSD is like unless we have it, and of course we all have it in different degrees and react to it and treatments for it differently. No wonder the Doctors struggle to try and figure it out.

Rosie, what are you majoring in at the university? My husband and I have one daughter.
She is healthy and very supportive. She is a court reporter and even did a deposition for a malpractice suit for a lady with RSD. She used to drive me to PT and has met my current Dr. I'm fortunate to have a supportive husband and son in law also.

How long was it until you were diagnosed with RSD after your fall? Mine was 4 years, and my RSD came the day following surgery. Thankfully, I was started in PT right away and was able to save the range of motion in both arms. So much has been taken away these past 12 years, but I'm grateful for the years prior to RSD and the knowledge I've gained since RSD to try and stay mobile and hopefully encourage others with this monster.
Please know we all care what you are going thru and how difficult it must be. Take care, Loretta Jewell

Hey Mate,


1.what it would be like not to be in pain

You would feel set free.

2.what it would be like to stand up tall and walk (I've grown 7 inches since going into a wheelchair! I'm now 6"1)

You could model, but would't like it.

3.what would have happened if I hadn't have got sick? would I be a qualified dr now?

YES, Chief of the department.

4.would I have the same personality? I mean, would I be "me"?
probaly not.

Somewhat, when you get thru this hell you will be better because of it.