MAYO CLINIC RSD/CRPS DEF. SYMPTOMS ETC…..good read!

What is it. How is it diagnosed. what are the signs and Symptoms…  You will find it all right here!!!

 

 

http://www.mayoclinic.com/health/complex-regional-pain-syndrome/DS00265

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Parenting with Chronic Pain

A Friend posted to FB this article today, and it was one of the best I have seen.  If you are or were the one suffering with Chronic Pain,  How would YOU talk to your children about it?  What steps would you take to lead you up to “the talk”?   It’s not an easy task, but one i have been VERY OPEN with my 2 boys and my step-daughter as well.  They have ALL been with me, when I have had Dr appts, blocks, and etc.  I wanted and needed them to know right from the VERY BEGINNING.  It’s something I was passionate about.  Not allowing them to see me like that wasn’t going to be an issue, it was something that my kids all needed to be a part of.  They have accepted it in SOME ways, and then not so much in others.  So for all you pain sufferers out there, please take a moment to read, and reflect on what you did or did not like about the article, what you would do differently and why.. and so on…:))

 

www.webmd.com

How can you cope with chronic pain and still be the best parent you can be? Here are parenting tips for people who suffer chronic pain.

Scared, Worried.. yeah bout sums it up!

For some reason today, I just can’t stop crying.  I can’t lay, sit, stand, nothing to get comfortable.  I feel the pain thru my back, (all of my back)  Down into my legs, and even into my Cervical area.  I hope and pray that this isn’t heading in that direction.  Who will know this?  Who will tell me?  I just want a freaking break from it all.  It’s make my head spin in 19 different directions.  

It’s continuous and doesn’t let up for even 5 minutes per say.  I have been moving around, walking the best I can.. as i put my best foot forward the next step feels as if i am stepping on a nest of fire ants.  The pain radiates so far… Oh, this has not been the way i planned to start my new Year,  This has GOT to get better.  When, I wish I knew.  How, hopefully a block will help… I just don’t know. anymore…I only wish I did!!!

 

Really? Is this what I bargained for?

Not sure if I have ever explained to anyone how much i HATE RSD.  If not, I am sure you will hear it from time to time.

This disease has taken over so much of my life.  Every aspect has changed drastically.  The things I used to LOVE doing that I can not do any longer.  Fishing, Hiking with my kids, getting down on the floor to play with babies, It has even taken away my patience.  I went from having all the patience to having NONE.  I just don’t understand this.  A generally healthy gal, with a few problems here and there (cold, allergies)  about sums it up.  To basically a gal that can barely walk.. and on good days.. I can walk without the help of my cane.   Those days right now seem so bleak.  I let my kids, my family my friends down.   Somedays I feel as i am good for nothing.. which is very true.  It’s been a hard road, and one that I just can’t seem to get a grip on.   It may sound as if i am whining or crying the blues, so not true.  I can still smile, laugh, carry on a good conversation, but then my memory is weak, and thinking sometimes is a problem too, but hey, don’t we all have days of CRS?  (cant remember shit)

As i try to sit, very uncomfortably in my chair, or bed writing this I have the pain, burning shooting from my back thru my legs, my entire back feels as if I could cook anything on it.. I just want a break from it all.  I know that my mama understands me so well.  I just feel as if I let her down as well.  It drives me crazy!!   My Boys, I don’t know if they truly understand it all.. I know they just hate watching me suffer and have to do all of these little things for me that i am no longer capable of.  They are my life, and without them and my family.. I dont know where I would be.   I am so very lucky!

If luck was on my side, which i surely wish it was.  I wouldn’t be in this horrible amount of pain right now.  They say that god never gives us more then what we can handle.. Then WHY?  Why do so many of my friends and I suffer from this damn disease?  Why does it hurt so bad?  Why the burning and stinging and feeling of someone sticking knife blades thru my body.  WHY?   I am blessed that it is nothing more then Complex Regional Pain Syndrome, but if our pain is the highest UNEXPLAINED pain on the McGill’s pain chart,  WHY can’t they find a cure?  Why can’t they do more then they are able to right now?

I just want a break.  I want to feel “Normal” again.  I want to be ME again.  I want my baby boys, to NOT have to see their mama like this.

I want this and need this to be the best year possible!  I want to be able to get my SCS and hopefully put some of this pain and agony behind me.  I am quite embarrassed by the way I am alot of times and that sure doesn’t help matters any.

Dear Tara,

I’m not even sure where to start, so Dear Tara is a good thing right?  🙂

I just wanted to stop for a few minutes and let everyone know what my feelings are for you!

You have ALWAYS been there to help, not just me but all of our other friends that also have RSD.  You have been an amazing teacher, friend, advocate, for all of us with RSD.  You’re heart is huge, and holds so many of us close to you.. In our times of struggles, pain, crying, everything you are ALWAYS THERE.  I don’t know personally what I would do without you.   You have explained to me more than my Dr’s ever have, and going into this whole RSD/CRPS alone was HELL.. not knowing what to expect, not knowing much at all.  You have stepped in and just made me feel comfortable in my own shoes again.  I know we truly all love the knowledge that we gain from you.  It’s your passion, your life, your love to help people, that  is completely evident.   Staying with a man who has been affected by this horrible hell.. and through all of the years you have NEVER left his side.  He is one lucky man to have you as a wife.  I feel very honored, blessed and always will.

Thanks for sticking thru the things I didn’t understand and maybe sometimes still don’t, but.. I know in time it will all come together and you will be standing strong for the world to see.

Thank you T, for all you are, everything you do, and furthermore.. Thank you for being one of the best friends a girl could have…(esp. one with RSD)   I hope that someday you are gifted for ALL you are in some way, shape or form.  Because if there is and RSD ANGEL you are truly it..

I love you Tara, and thank you for everything you do!!!!  Also, please Thank John for me for allowing the time you spend with us.   You are truly an amazing couple…XOXOXOX

Sad!!

Happy New Year to all of you, family and Friends!

I have made a resolution to myself to become a much more positive person.  2011 was a rough one for me.  No matter what I did it wasn’t right.  I just wanted to hide away on so many of those dark and dreary days.  As I thought back on the year, there were so many things that were keeping me down, and keeping me in a “sad state” of mind.  I couldn’t see it, I couldn’t feel it, but I sure experienced it.

As I am writing this tonite, I feel as if I have a ton of bricks on my shoulders.  I just want to make everything right.  I want to be able to express my feelings but yet at times I feel like i have no one to turn to.  It’s either my same friends every time or my family.  I HATE burdening them with my problems.  I hate making anyone feel “sorry, or sad” because of the way I am.

I am still really trying to grasp this concept of all this illness and hell that has fallen on my and of course it effects those I love just as much.  What is a chronic illness?  What is the answer to that?  Whether I am sitting here, tears rolling down my cheeks flooding the front of my shirt… I sit alone, I am alone and I feel alone.   What is the pain scale.. Hell I really don’t think that they have one that would explain our pain… It’s the hardest pain to explain to anyone.   When I talk to someone, and they ask how are you?  I am not going to lie, and I know that it gets old hearing it, or seeing it.

I usually am a very happy person, and I still AM.. it’s just tucked away right now for safe keeping.   Right now, I just want some things to be done and taken care of.  I want to feel like that mom again, where the kids would come over and be like.. Your mom’s the best.. Those are the days I want back.. Will I get them?  Sure, maybe just in a different way.   OR driving down the road singing, off-key, loud, and really obnoxious with my Step Daughter that totally loved every minute of it.   Will that ever happen again?

So many things have changed in my life because of this pain, this invisible illness, this..”the dr thinks it’s all in your head”.   It’s a battle everywhere you turn, everything you try to do, it most of the time FAILS..

 

How do you come out of this?  You take 4 steps forward and 10 steps back.. Yeah, one to many I know.

 

This is going to be the best year ever I truly believe that.  However, if it’s not.. I will just chalk it up to one more fail..

 

I will put on my happy face, and be the woman I once was.. No one deserves ANY LESS from me and that is the person I will be…