Reflex Sympathetic Dystrophy (RSD)

[3SA POWD3R]

7 years with RSD really gets to someone. Especially someone as young as me. Being in this much pain 24/7 is seriously getting to me. Today I was supposed to be going to my tutoring program, but woke in excruciating pain. I tried to get up but my leg cramped up immediately. Once I got it out, I could still barely walk. I had pain on thee bottom of my feet up to my neck. I just broke out crying, && I realized it wasnt because of thee physical pain Im in, it was because of thee emotional pain this is putting me through. I hate not being able to sleep, I hate not being able to do thee simplest things in life. I used to be a happy kid, but this monster of a disease is turning me into such a depressed person. I know Im going to have days like this, but honestly it gets old real quick. Its not fair being like this, not just cause im young because no one should have to suffer thee way i do every single day.

[traceyk]

I know how you feel and what you are feeling! I too said "why me" why did this disease choose me?? I was a healthy, happy, hard working mother of two - with my dream job. One day over 3 years ago while I was working ( I was a Sales Rep ) I went on my appointment and when it was over - I started to walk out of the building - they had beautiful huge glass doors -so I went through and the part that makes the door shut slowly stopped working - my arm got smashed! I had way to much pride to cry in public so I went to my car as fast as I could - long story short - I had to have surgery -so I did - I went to therapy and did everything the doctors told me to do - but for some reason my pain was getting worse and moving to different parts of my body! When I told my doctor about what was going on I was sent to a Specialist -after that I was told I had RSD - WHAT THE HECK WAS RSD! AND WHY DO I HAVE IT?? It took me a long time before I would even read about the disease. I had days and still do have days just like you are talking about - I would look up and say "why - why me - I have kids, my dream job, a husband, my house - why me"? Fast forward three years - I have my kids and that is about it! I am ok with it but it took everything I loved away from me - it took the simple joys of life away from me - I had some very dark and scary days - there were days that I didn't think I was going to be able to make it to the next day. But I did and you know why - because of my boys - their love has kept me going for three years and its a choice we have to deal with every day of our lives! Are we going to try and make the best of today or are we going to let this disease get the better of us? I know its easier said then done. Just yesterday I went to get up and get my kids up for school and my left leg decided it wasn't going to work - it was so very painful - It took everything in me to get my kids up and off to school - after they were gone I had to go to bed and that is where I stayed until they got home from school. We are not always going to have good days - but we don't always have to have bad days either. I am sure you have a whole lot of people who love you and support you. You might say "yes I do -but they don't know what its like living with this disease" and you are 100% right - unless you have walked in our shoes you have NO idea what this life is like. The pain is a pain I have never experienced before - the feeling tired all the time no matter how much sleep you get - the burning sensation you get in different parts of your limbs -(you feel like you are on fire) NO one gets it - but at least we have people to love us and to try and understand or just being there is sometimes all we need. I hope you have more good days then bad - You sound young - please don't ever give up or think it would be better anyother way - You have the disease and you have people out here that care and know what you are going through. Take Care of yourself - and I hope something I said made sence to you.

Take Care-
Traceyk

[3SA POWD3R]

thank you for taking thee time to write me. i was gonna try to write more detail but im hurting; so i will make this short && sweet. i kno exactly what your, this monster has taken sooooo much away from me. but mainly its taken thee things that i love most. i dont get to go do things with my family all that much anymore; my gymnastics && dance was stripped away from me; && this kills me. but yes i am young, i am 14 && have had this for 7 years. im in such a horrible mind set of i cant do this anymore... itz thee worst thing in thee world to be this young && not wanting to live because im in soooo much pain.

[traceyk]

Hi Again - You are 14 and I am almost 38 so there is a little bit of a age difference but the one thing thats not different is the way we feel. I have a son who is 14 and another one that is 11 - I think you are a very strong person for dealing with this and being honest about your feelings. It was the hardest thing for me to come to terms with - I had to finally tell someone that I was thinking about the worst thing anyone can do and that is remove myself from this earth and this pain. I have never thought that killing yourself was even a option and I did not understand why people did it and why they did not think about the hurt and the pain that they left behind. But after the first several months of dealing with this disease - I started to understand where these people came from - I was at a point where I didn't think I could do this one more day! But I did and so can you - I know its hard to get up in the morning - for one the minute your awake the pain hits you in the face (not that it really goes away while you sleep) then your feet touch the floor and WOW that's hurts even worse! It takes everything in me to get my two boys ready for school in the morning and by the time they walk out the door - I am ready to lay down again - somedays I can't even get out of bed. But let me tell you this - I would not change one minute of my life! Yes I have said - "If I could take back that one day that ended me up where Iam today" I would -but everything good, bad and otherwise happens to us for a reason. I would rather live a life of pain then to not live at all - I want to be in love - I want to watch my kids grow - I want to be around when they get married - I want to be a Grandma - and even if it means I am in pain - because there is NO other option. I feel very bad that you are SO young and you are dealing with this monster of a disease but know this - you can and you will do it and for whatever crazy reason you were put through this - it will make you a stronger person - you will NOT take the simple things for granted anymore - you will stop and smell the roses - because you at such a young age understand how quick it all can be taken away from you. You will probably be a better parent because of this disease. So please if anything understand this - I know its hard - I know its painful - I know there are days where you cry because of the pain and what the pain is doing to you. But think for one minute if you couldn't see your parents anymore - or brothers or sisters (if you have them) and Grandma & Grandpa and Aunt and Uncle and all of your friends......the people you love - that is why you will continue to get up and do this again tomorrow. I hope and pray they find a cure or at least something that makes this a little eaiser to deal with and I know you will be around to enjoy that day - god willing - you will be pain free someday. Please don't let the dark days get you down - If you feel that bad inside you should talk to your parents or someone you trust and let them know. Its OK to need help - I think that was one of the hardest things for me when I got this disease - I didn't know how to ask for help - I didn't know how to ask someone to do something for me - I was ALWAYS the one who did it all and fixed any problems that came along (for anyone and everyone) But with this disease you have to ASK for help and you need help. I would not wish this on anyone - it is the most painful thing I have ever gone through - and I have really lost everything - but I still have my boys and at the end of the day thats all I need is there love and support and I know we will get through this. I am always here if you need someone to "unload" on - I know its hard to talk to people who don't have the disease - they think they understand they think they know what your going through - but in the end they don't have a clue - until you have walked in our shoes - you really don't have a clue. If you are 14 then you got this when you were 7 years old - what happend did you get a injury and from there the RSD - and from what it sounds like it has spread through your whole body - Are you still able to go to school? Mine started in my arm and within weeks it was spreading like wild fire through my body - so I do have it in all of my limbs - head to toe. Keep your chin up and always remember NO MATTER how bad the pain gets - always find a reason to smile everyday! You take care of yourself and like I said I am always a E-mail away.

Take Care-
Tracey

[3SA POWD3R]

Thank you very much; I really do appreciate all thee time you're taking to write me && give me advice && support. I was never able to talk to anyone cause like you said, even though Im young I was always very independent, I just wanted to take care of my family && friends. But with everything that has happened lately; I now know I have to learn to take care of myself. I understand exactly what you're saying about your boys, because honestly I think thee only thing keeping me alive right now is my little 2 year old niece (Kacie). Thee day she was born was thee first time I cut my wrists; but when she came into this world && thee first time I looked into her eyes I knew i had to stay for her. She is my everything. But lately Ive also been wanting to live for my papa. By thee way Im saying my grandpa. But growing up he was like my dad so when he passed all I wanted to do was make him proud of me, but Its sooooooooo hard without him here. I want him back but deep down I know hes in a better place. I have a huge family so with thee support of them that really helps. I have a cousin who is 10 hours younger than me && not long after i got RSD he tore his ACL, so he can relate to a lot of my probs. He is my bestfriend but he still doesnt know exactly what Im going through. But I will answer your questions now. When I was 7 I was over at one of my friend's house && we were on thee trampoline; I was just messing around && next thing I knew i landed on my arm wrong. I completely shattered my elbow && broke thee bone above it. My break caused a lot of nerve damage, but months after I had gotten my cast off && one night I was supposed to go to gymnastics but didnt because my back was hurting. After days of having that pain my mom decided to take me to thee doctors. I went through a lot of b.s. then they finally diagnosed me. At thee time since I was so young I didnt really understand what they were telling me, but after a while I figured it out. It has drastically changed my life. I miss out on so much && it kills me. This year is when I finally decided to take responsibility of my own health && education. That is why I decided to join thee support group, Im finally able to ask for help, but I still hold back a lot. && as for your other question, this year i didnt really go to school. I went for about a month then I got Appendicitis, so I was recovering from that when I had a really bad flare up with my disease so I ended up on whats called home hospital so I just had a tutor. But its summer now so Im trying to concentrate on getting better. Next year I will be a freshman so I hope I dont get really bad again, cause then will crush me. But like I said I appreciate all of your help you have given me (already). Thats all for now. I wish you thee best, we can get through this.

[kelesmom]

Can I ask, what meds are you on and what treatments have you "tried"? What has worked, even for temporary relief, and what hasn't worked for you?

[traceyk]

Hi - I have been so worried - I have not heard from you and last time you wrote you did not sound like you were in a good place. I wanted to touch base with you really quick - I have some of my own health problems going on right now and I have a big day at the doctor tomorrow. I am not feeling great and I feel very weak - so I am going to say good night for now - but when I get home tomorrow I plan on writting you back - I have so much to say and I am so glad you shared with me. Thank you for that! I know its hard - and you are right we will get through this - you take care of yourself and look for my E-mail tomorrow.

Take Care and Feel Good-
Tracey K

[3SA POWD3R]

Ya I know I'm sorry I just been really busy. Last week I had to prepare for my cousin's wedding. I was a bridesmaid. Friday was thee rehearsal dinner, && yesterday was thee wedding. Ugh it was exhausting, but ya I had fun. So how did your appointment go? Oh && thank you for actually giving a damn; lol, I'm not used to that.

-Juliana

[traceyk]

Hi - It sounds like you had a busy but great weekend!!! Some fun is always good for the soul - I will write you tomorrow it is almost 8pm here in Florida and I have not fed my children. My doctors visits have not gone well - I will tell you about them tomorrow. My kids don't have any idea of what is going on and I am trying to keep it that way until I know more. And of course I have one of my children sitting in here with me so I have to be short and sweet before he trys to read this! :)
Just so you know I do care and you have touched a place in my heart - I will always be here if you need to unleash - I understand this is not a easy thing to deal with - but I have all the faith in the world that you wil see the day when there is a cure for this monster of a disease and you will live a long and happy life - Take care of yourself - I am sure you are in bed or resting if you had a weekend full of wedding duties!! I hope you had a great time and I am sure you were a beautiful bridesmaid. Its always nice to get dressed up and go out - since we don't get to do that to often. OK take care and I will fill you in tomorrow on my visits to the doctor. Have a good night.

Take Care-
Tracey

[3SA POWD3R]

Ya I did. It was crazy, && my feet && legs are still killing me. but okay I understand that. I always keep everything from people until I know what is going on. As does everyone in my family. Because apparently my auntie went to thee doctor && they found a lump on her breast so she has to go get a biopsy && what not. I'm a little scared, I mean this is my godmother. Cancer unfortunately runs in my family. My grandpa had cancer && years before his sister died of thee same kind. My grandma is about a 10 year breast cancer survivor, but I don't know. It gets kind of overwhelming. But I'm praying that everything goes well for you. Take care.

-Juliana