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.

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…

 

Hi, My Name is Amy.. and I am and RSD’er…..

So yeah, I don’t know when and or if I will ever catch a break from any of this bullshit going thru my life right now.

RSD totally effing BLOWS.. I HATE IT, and it loves me, pretty sad when the only freaking love i feel from it is that it wraps its loving arms around me and beats the hell out of me everyday. I try to push on, and the more I push the worse it becomes.  Why does life have to hurt?  Why do people have to suffer from such horrific diseases?   Why can’t anything just be normal again?

Ever feel in a day these damn bee-stinging sensations, shards of glass going thru your body, fire, and i mean one that can’t be put out?  Or, how about everytime you take  a step, you feel as if that’s gonna be the one that takes you to the ground?   Oh Hey, I totally forgot to mention these kick ass color changes that completely go on and on, or the absolutely gorgeous mottling that is present in pink, red, purple, ya know almost the colors of the rainbow.. just not quite.   Oh dear god, let’s now forget how loud talking voices or dogs barking present a problem that almost feels as if someone that you really kinda like goes thru you like a knife blade stab, after stab.  And, then I wonder.. Why no-one can really relate to me.   I get it, its hard to imagine all of that happening at once, but truthfully its the hard cold facts.   Oh damn, how could I have forgotten about the cold, the humidity, boy oh boy when those types of things happen, My body wants to contort, or my hands may curve into a claw.    I often wonder what i ever did to cause something to this extent… Oh that’s right.  I didn’t.  It was a work injury to my shoulder that left me with this monster.  When life sends me lemons, I break.  I really feel as if this medicine don’t help, but then again I dont think that anything really is.  I can’t afford to have a Spinal Cord Stimulator to even try to help with the pain, I can’t.   I know those can be a huge asset to you or they can be a hindrence,  therefor it makes me want to try it even more, because If i can get out there and get moving thats what i want i dont want to be stuck up in this hole of a house, with noone around that don’t just want to argue.

Medications, now that’s a whole entirely different issue.  I can’t get some of them covered that I really REALLY need..  This disease has taken alot of drastic matters for me.. Who wouldn’t for real????    I don’t know anymore, its just all such a blur, such a cluster fuck of emotions.

 

So getting back to some of the other things that bother me to no end, would be the damn sounds of barking with a high pitch bark… ugh, just don’t work for me, thank the good lord that this dog, here of my son’s is getting fixed soon,  maybe that will drop everything, his bark, his jumpiness, his whole disdameanor.  He’s one thing that has brought me joy, and he surely knows when i am down and out…

 

Well, just a little more from a suffering RSD’er and I hope that each and everyone one of you all, can actually sit, lay, stand to keep these demons away and keep up the good fight.  I pray for you all, and myself,  If you have any advice for me, please share away.  Anything i can do to help any of you, would be great progress, because helping you, even if in chatting helps me more then anyone would ever know…

 

Take care of yourself and your RSD friends, they all need it just as much as we do!!!!  HUGS!!!

Why Do I Cry?

I hurt, the pain won’t stop.  The burning feels like vats of fire that are havocing my body inch by inch.  Why is it so hard to see, yet so damn easy to feel?  Why, does it feel like everyone just tends to think.. yeah right.. She looks fine!!  I am so tired of feeling this way, I need a way to deal with things better.  I try to uphold my positive attitude, and laugh and smile, and carry on.  Why does it still hurt?  Hug me, yes.. would love that.  But.. that hurts too.  Its hurts so bad that I am not crying because I am hugging you goodbye or goodnight, I am crying because I am hurting so bad inside its killing me.  I miss that, the times when ANYONE could come up and give me a hug, and now.. I am so careful.  My Grandma is 87 almost.. I miss her hugs the most i do!!!  I just want to be able to wrap my arms around anyone and hug them for a long time.. but it hurts.. That is one of my favorite things to do!!

 

So, why do I cry?   I cry because what once was, is no more.  The things I used to LOVE doing I can’t.  Hell, I can barely make it up 3 steps on my GOOD DAYS!!!  Hiking is out.  I can walk for bits at a  time, but let me tell you.. if i over do it, I usually end up in the hospital for a good dose of medicine to get it stopped.  Even then that don’t ALWAYS help.  Hell, I just wish that at times I could curl up in a corner and wish this all away.. Not going to happen..

 

So.. why do I cry?  I cry because I am missing out on so much with my boys.. THANK YOU GOD, for not making them any younger then they are, when i developed this horrific disease.  and now, add bad problems to it.. Yeah, its great.. My kids are great most of the time.. I know they both get scared from time to time, as when I am starting my new meds, or something like that, and I am spaced out.  I can’t even carry on a decent converstation.   They look at me with that look in their eyes that just says, Mom, why can’t you be the you, you used to be… HEARTBREAKING!!!  Or yet, when i ask them about something, they give me an answer and yet.. 15 minutes later I am asking again.  Only to hear.. mom you just asked me that.. I dont even remember saying a word to them about it..

 

So, why do i cry?  I cry because I am not the daughter, grand-daughter, mother, sister, aunt, niece, cousin I used to be.  I love my family with my entire heart, and quite honestly i DONT KNOW WHERE I WOULD BE WITHOUT THEM!!!  I have 2 absolutley wonderful, beautiful friends that have helped me more then they will ever know.. Deanna and Heather.  Without them.. keeping me busy, talking to me, pumping me up.. and then there are my internet friends.. Friends that i DEFINATELY could not be without.  They tell me that some of my best friends live in the computer and that is right, they really do..They bring me up when i am down as well.  I have met some, and do plan on meeting more.

 

Where would you be if you were put in this posistion, how would you handle yourself?  I can’t clean for myself anymore, doing dishes is just a thing of the past…I can go on and on about what i can’t do.. I can continue to be down,. but i am not going to.. I will tell you why…

 

Why, I smile?   I wake every morning to the sounds of my boys talking, or getting ready for school, I hear the dog barking outside, I talk to my mom and dad, grandma and friends on the phone daily.. I can get out of bed, even if it takes me 20 minutes to do so, thats just 20 more minutes I get to enjoy just listening…

 

I smile, because I do have family, friends, and all that do love me, and I am able to do things with.  My boys, take me to dinner, mom and dad do the same.  I talk to them on the phone, and sometimes for too many hours, right Aunt Donna..:)

 

I smile because I can see the colors changing and the leaves on the ground, knowing that fall is just around the corner.. Fall is and has always been my favorite time of year.  The smells, the beauty, the 1st snowfall, just about everything about fall makes my heart sing…and makes me smile.

 

I may have alot of flaws within me as a person, I may have some hatered, but.. I am still ME.. nothing is going to change that, my heart still beats the way it should and because of that, I would give my left shoe on a cold winter day to someone that was missing one.. I still have my personality one that can at times make people laugh and can make them cry.. My grandma blames me for being the one that makes her talk like a sailor, hey what the hell you ONLY LIVE ONCE…

 

Why do I smile?  Because someday, I know that deep in my heart even if it happens after I leave this place.. there will be a cure found, and for those that come after me.. They will get help… I hope that my boys, give all the information they know about RSD/CRPS to EVERYONE they know.. The only way people are going to know about this dibilitating disease is if it gets spread from person to person.. So yes, if you want to know what its all about, I try to give websites, help groups, there are so many right here on FB.. Here to Help is a fabulous one.. and then rsdhope.org.  There you will find a letter, and tons and tons of information about our disease.

 

Why do I smile?  Because one day, my son was hurrying home from school and a friend of his asked him why he always was in a hurry to get home?   Bray says, because my mom has this disease, and i need to make sure she has taken her medications.. Haleigh says, don’t lie, my mom has that too… and because of 2 of our kids.. I have been blessed with one hell of a friendship with Deanna Dimond.  We have helped each other with Dr’s, our regimens on how we do our daily things.. We are there for one another no matter WHAT the situation.. She has become the sister I have truly never had and I thank god each and every day for her.. Love you bunches Deanna..

 

Why do i Smile?  I have the best family that I could EVER ASK FOR.. They support, carry, and love me for who I am.. they have never given up on me, yet cheered me on… This helps with everyday of my life.. to have people that love and care about you that much… I am blessed… Thank you to Aunt Donna to always listen to my crazy life up and downs… it means the world to me.. and to my mama and daddy.. for being the type of parents that just let me talk, but give me the support i need on a daily basis.. I love you more then life… Uncle Ron, for sending me cards, and giving me that hug i need everytime i see you, or just your sweet, loving kind words over a text message.. My brother, for listening to me cry, scream cuss, and then laugh.. To Heather, for being there for me, and telling me how things are.. straight up without missing a beat.  You have gotten me thru this last ordeal with flying colors and i will forever be grateful to you for that.  I love you girl!!!!

 

To my Boys, whom hold my entire heart in their hands… We have been through so much together just the 3 of us, but we have somehow made it… emotionally, physically, and well, we will talk about the financial part later..:))

You have given me such joy just watching you grown into men.  Into the MEN i have made you become.. You are my life, my world and my everything and i love you both each and every day of my life more and more.. Michael for always helping me with what he can, and for Bray whom usually if Deanna can’t misses school to take me to the Dr.. He has seen some pretty harsh stuff I would never want my boys to see, but they have, and i cant change that.. I just want you both to know… You make my life what it is, and as I watch you grow up and move into what you have become, I couldn’t be any happier, or more proud of either of you.  I love you both with my entire heart and soul…

 

Why do i smile?   Katie girl.. You have been in my life for the past 6 years, you have brought so much joy to my life.  If i had ever been able to have a little girl, I would have wanted her to be JUST LIKE YOU.  You made my heart full, of life, love and so much more, I do not know if i could ever explain the words to you.. I wish nothing but the very best in life for you, you are the sunshine each day I think about.. and I love you to pieces Sis.. I hope you ALWAYS REMEMBER THAT AND NEVER ONCE FORGET IT!!!!

 

Why do I smile?  Because I can sit down here, write this “note” and I can feel much better inside.  Even though I cry now.. I know that everything will be ok.  I just have to Let it go, and Let GOD!!!

 

Have a peaceful day everyone, I know i am going to sure try!!!  To all of you that matter in my life.. There is nothing I would change about any of you.. You were put in my life for a reason, and I beg you to stay..

 

I LOVE YOU ALLL!!!!!