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.
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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…

 

A Little Worried

For the first time in probably 4 years I slept 12 straight hours. I felt so good when i got up, was a little hyper.. a lil crazy, and just had so much ambition. Where did that come from? However, in the night I woke up just sobbing 2 times with spasms so bad in my legs and back that I couldn’t even more. My body when my back spasm’d was like contorting my body almost kicking my poor 80 chocolate lab that just got his nuts cut off, off my bed. He made a fast track right back up and came right to me to see why I was crying. I knew then, the damn cold, wispy wind, rain and snow was coming.

People think that we are crazy when we tell them a storm’s a brewin, or watch out we are gonna get a cold front… Hell, I swear to you.. I can tell the weather better then any weatherman around. LOL

Seriously 2 days ago, I woke with a cold, running nose, stuffy head, sore throat, you know all that shit that comes with a good old fashioned cold… The weird thing was.. my Tongue.. YES, my tongue that thing hurt so bad in the back of my mouth i didnt even want to eat, drink, let alone take any of my 3,435,345 pills that day. So it was whatever… but!…. as the day wore on I started feeling better, heck i was gonna take myself to the dr, but chose not to cuz i figured i could battle this cold with some good ole sea salt and water… gargle, gargle, swish, spit.. Yep, that’s exactly WHAT I did.. all day long…. and by that night.. it was pretty much gone. YAY ME… What i didn’t expect was the NEXT MORNING, waking up with what looked much like a fever blister on the side of my tongue, and on my lip that made my lip 2 times its original size. Now, I am thinking WTF?!?!?!?!?! So, I started gargle, swishin, and spittin again but it didn’t help a damn thing.. so here I am with this HUGE fever lookin blister on my lip (PS.. ive never had one before) and i just don’t even know what to do.. How to do it or what.. I am taking acylivir because with my RSD and it messing with my damn nerves gave me shingles… So yeah.. fun it’s always something New and Exciting with CRPS, I swear.. I told my friend today as I noticed as my son was driving me to the grocery store, that my eyelid was peeling, yeah thats right peeling right the hell off my lid.. like i got sun-burnt or something to that measure.. WTH is that all about??? Anyone??? I don’t know anymore..

I’ve just decided to live by this motto…(sorry mama)

I fucking love CRPS and CRPS sure the hell loves me…:))

Gotta smile, and keep up my awesomeness, because lemme tell you, when this broad goes down… she goes down hard.. So, if anyone feels like joining me with my new motto FEEL FREE… It feels good to say it… It feels good to fight it, and I am telling you what,, its a damn fight I WILL NEVER GIVE IN TOOO!!!!

As, I have said before… I have RSD, but it sure the hell doesn’t have ME..:))

Oh yeah, my friend told me I was her crazy friend… who, me? CRAZY.. oh helllllllll yeah!!!!!!! LOLOL gotta live up to my standards…:))

Have a great day!

My Kids— The Joys of my life!!!

My boys are the biggest and the most important part of my life.  They have always come first and they always will.  I feel as if being a parent has been somewhat easy at times and a total bitch at others.  I love it when they come to me and talk so openly with me, I feel as if I am being a good listener, and just enjoying it all with my heart open wide…

There have been times I have wanted to kick them in the ass to head them in the right direction, but yet… they always seem to make that slight turn that takes them down the beaten path.  One day as I was telling them, Look.. I did this when I was your age, but.. I am telling you this so you don’t make the same mistakes I did…. bahhah, that was a FAIL.. like they are going to listen to me, what am I thinking?  REALLY!!!!   They both have chosen paths that I have adored to be quite honest.  My boys are hard working men, they love to have fun, and when i look at them, the joy i feel in my heart tells me i have done a good job in my eyes, but further more.. it tells me, that just when I truly didn’t think they were listening THEY WERE.

To be quite honest, I would love them to be a lil more uppity when it comes to helping me, but.. of course I DO like things done the way i like them, and I do like them to do it when I ask them, not 3 days later…LOL   Then I stop and think to myself,  Why do I put myself thru the hell of arguing with them, its not like they are out causing all kinds of havoc, running the streets and being rotten.  They are boys for Christ Sake’s and they will do what they want when they want… I just need to accept that.   It’s hard…

When the dr’s discovered that I had an uncureable disease my boys stood up and took hold.  They have been my biggest supporters, and yet I think that deep inside everytime they look at me, or something new comes about, they have to learn to deal with it all over again.  They have taken me to my Dr apt’s, to therapy, they have done everything under the sun for me when it has come to that.. I am actually still waiting on a handrail however, to get up and down the stairs…lololol  First things first i guess.  🙂     I will never forget the very first Dr appt I had that my youngest son took me too, I thought he was going to jump down that dr’s throat, and just go from there.  We got out of that office and All i heard for the 2 and a half hours how he would have just liked to punch that asshole in the face…LOL,   Little did he know at the time.. SO DID I… Then, he took me to another one, this time, as the Dr was examining me, and doing a test on me the look on his sweet little face, just made me sob.. They were hurting me and he was scared shitless..  Neither him or I could wait to get out of that one.   My stories go on and on with him and Dr’s.  I didn’t want to keep this from my boys, I wanted them to see that it is real, and the things that have changed about me are real, and sometimes scary.  Most of all, I wanted them there by my side thru all of this..  It’s hard enough trying to do this kinda stuff alone, but when your kids start helping and learning more and more about it, and seeing what it’s doing to mom.. They understand it enough to start spreading the word.

My oldest son took me to a few as well, this boy works or was working 2 jobs going to college full time and helping me as much as he could.  So the few visits that he has been able to attend, I have gotten blocks.  You never really are prepared for anything like this until you have been thru it  a few times.  I had a block on my back on this one particular day that my oldest took me.  It was called a lumbar injection.  It wasn’t so bad until I came back in the room and he seen me.  He got upset as well, and just was ready to go.  I know that it is hard for them to except this type of stuff but the last thing I ever wanted, was for them to NOT be a part of my medical needs.  They needed to be there, here what the Dr has said and go from there…

I am almost 100% sure that neither of them have truly dealt with this all.  Not even sure they have really wanted to go this far with any of it.  None of us have, but you have to do what you have to do.  They are my pullers, they pull me thru some tough times, they keep me up when i need them too, and most of all they are there for me when the going gets too tough for me to put on my big girl panties and kick the world in the ass!!!

J and Bray, I want you both to know that you are my life, my world, my rock, and my heart!!!  You have made me PROUD to be your MAMA, and I am so happy that we have that special bond that noone could take away, even tho one has tried.  You have both done well,.. I know that you will continue down that path and that you will both make the right decisions, I handed you the tools you needed when you were little, with some help from your dad.. and I know that He loves you too.  He is proud of you as well.  We kicked the hell outta the years that we struggled so hard with, and we made it thru.  As long as I have the 2 of you.. We can make it thru anything, and i think that we have proved that over the last 19 years.  You have no idea how proud I am to be your Mom, and I need to tell you more!!   I love you both with my entire heart and soul, and you will always be my world, my happy place.  I love you both so very much thank you for being the MEN you are!!!

I Love you,

Mom

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!!!!!