Hi all, I came across this post from my daughter on one of her Face books, talking with some other kids with RSD...It made me cry to read this, words from my daughter.


I've had RSD since I was 11, but it didn't manifest in the fun RSD-y way that it is currently until I was 15. It was mostly just a crappy immune system and heightened pain.

I'm one of those overly optimistic, peppy people that sees the positive aspects of life, so it really hasn't destroyed my spirit too much. I wish that my friends understood more, but I can't change them and the way they think. A whole "ignorance leads to fear thing," with them I guess. It's rough now, though, because I grew up a long time ago, and they never had to. It's one reason I freak my mom and sister out and talk to people older than me. Haha.

I'm actually kind of glad I fell down that day and ended up with the RSD. No, I'm not happy about the agonizing pain that came with it, but I wouldn't be the person I am now if it hadn't happened. I believe that everybody in this world is connected, all of our strings overlap if you will, and if you change one thing, then all the other strings are affected as well. If I wasn't the person I am now, then the people closest to me would be different as well. I quite like them the way they are. Plus, I wouldn't have met some of the most incredible people I have ever had the pleasure of talking to. Not just the friends I've made from the Cleveland Clinic pain rehab, but the people I've met just because of who I am, and the person that the RSD has forced me to become. The world seems a whole lot more beautiful when you've seen the darkness in it.

I know that spiel was somewhat out of nowhere, but somebody asked me the other day if I could change anything, what would it be? I think you guys know my answer.

Clearly, I am an insomniac and have waaaaay too much time to think of these things...



Also, this quote pretty much gets me through life. It's from the musician Andrew McMahon. Check him out if you've never heard of him. He's the singer/songwriter/pianist of the bands Something Corporate and Jack's Mannequin. He said this after he went into remission from leukemia:


"The sun rose for all of us today but for me it meant more than most sunrises of my near 24 years. It meant that this year had past and a new one had begun. It meant that the wires were undone and the scars were just scars and yes; that it's time to move on. In this year I have seen dark places and I have seen some places flooded with light that I never knew existed. I have walked to the door of death and never felt more alive and I have learned something that is inherent whether we chose to live knowing it or not. That we are just pieces of this crazy universe, floating through space like every other piece of this crazy universe. You don't have to push or pull or fight or win, the struggle is illusory. Sometimes or rather, all times, you just have to be. I am doing my best to be and today it occurs to me that in being I have been very lucky."

Sandy.. your daughter is a very special individual!!!! Please let her know that and that she is trully a breathe of fresh air for us all!!!!! Thank you for sharing this blip with us all here...out of the mouths of babes!!!! Hugz and have a wonderful night!!!

KS

I agree. That was awesome. Lindsay is a very good writer.

SandyS, has she set her Facebook profile to private, friends only? If so, then you are in fact publishing something on a forum that she may have wished to keep very private, something that is meant to be shared only with her friends and you. Have you considered that?

Dear Sandy;

KS hit it right on the nose, out of the mouth of babes. You daughter is amazing. Her attitude is absolutely enlightening. She must be a truly amazing gift for you to embrace. I have often wondered how the children with this disease view it. We as adults, tend to analyze every aspect of everything. Children tend to keep things simple and deal more with the reality. She has an amazing attitude, that we should all embrace. I too have met some truly amazing people on this journey and she simply reminded me that there is an upside to every downer. God Bless you both!!!

Jeanie

the post was on a PUBLIC RSD discussion board...I would never publish anything that would be private. THANKS for the advice! But I have raised my children to be very understanding of this world and she is understanding of her disease. Sorry if you were offended.

Hi Sandy,

I totally agree with every word Lindsay said! You have a great daughter right there, she's such a credit to you to have such bad pain and still try and remain optimistic the best she can!

I try and see things the same as Lindsay and stay optimistic. Yes, it is hard but I also know that things could be much worse. I could be dieing, have no home, food and water etc etc. Many times things seem to be bad and I get really depressed but I do always try and realise that things could be much worse, like Lindsay.

My Uncle has just been diagnosed with Terminal Cancer. He's been having chest pain for 2 years and the Doctors said that it was gout in his lungs and just gave him pain medications. It was only the beginning of this year that they did a scan and found he had terminal lung cancer. I think its things like that that make us realise how 'lucky' we are. Yes, we live in excrutiating pain, yes, friends and family don't understand many times and yes, we have many other issues but we are not dieing and therefore, it is important to try and live life the best we can!

My grandad passed away in November 2008 and I think that was a big point when I started realising that you have to live life the best you can. He'd been pretty active and then one day suddenly, he had a major heart attack and died. No one suspected there was a problem and there was no warning sign which is the hardest thing to deal with, other than knowing that he's gone. I know my grandad wouldn't want me to be too sad - he was always an happy-go-lucky person - and I always try and stay positive the best I can, even though it is extremly hard at times!

I can totally relate to what Lindsay said about having to grow up way too quickly. I had to mature a lot quicker than most of my friends due to RSD and it hurts sometimes seeing them having fun whilst i'm at home due to pain but I am thankful for it in some cases.

Please thank Lindsay for writing the post and tell her that she is an inspiration to us all!

Alison xx

It was just a question out of pure concern. Sheesh...

Marlene,

I have had the utmost respect for many people on this board, I feel that they are a part of my family. They give me great advice and I feel the love all the time. I have come to them for so many things, days where I have not been able to get answers. So sharing something with them after being around for the past year...they know me, I talk about my daughter all of the time. So this was just a little blip of my daughter. Nothing personal, my daughter knows I posted this. Thanks for your concern.