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…

 

Changes

In our lives there comes many changes, we are little, we have fond memories of them. My memories for this blog are going to consist of just that.

When i was little i lived right in front of my cousins, Christy AKA sis, and Kenny.. Who were always at my house. My parents kinda took them in as any aunt and uncle would who were good people. Esp, when you live right beside one another. So as we grew up it was more like a sister and brother type of relationship that we had with them.

We had some family that lived in missouri and would visit frequently. But, as we grew up, my cousin would baby-sit us, and her boyfriend would always come over because he was cool.. and at that time i truly remember 2 songs that come to my mind that we would listen to as he would blare them in his El Camino or something like that, but they were Chevy Van and Lovin, touchin, squeezin. Wow, what those memories would hold.. My cousins best friend was Jackie, she was alot of fun and she would play with us while my cousin would make out with her boyfriend Lance, yeah good babysitter huh? LOL Kenny, chad and I would all do something else which would always end up somehow of getting into trouble by the end of the night, HOW, i really dont know…hehe

Anyway, as the time went on Sis was getting into some things that she shouldnt have been, but.. hey, it happens. So, one day I heard my mom and dad talking about how she was going to MO.. I thought to myself no… So mom and dad called us down stairs and was telling us how she was going to be going. We thought we had some time to play with her yet, boy was i mistaken. We had to go over that moment and tell her good-bye… ;(

I clearly remember standing in my bathroom upstairs, in the window watching and cried as they loaded the car with her belongings and then they got in. She sat in the window waving to me for as far as i could watch her… I remember running to every window for the hopes of just one more glance before she was out of sight.

This was a pretty rough time for me, but it couldn’t have been more of the wrong place to send her. There they would buy 20-25 cases of beer right off the beer truck. She didn;t need to be exposed to any more of that, she was just doing a fine job of doing that on her own here!!! So anyway I guess that the importance of her being there to here brought me to alot of my feelings today.

We were very close, she was more like a sister to me then a cousin. We had some really great times together, here and when she was there. We did many things together, shopping, go karting, mini golf.. white water, which was a huge water park. When she was drinking it wasn’t so much fun, she was always looking to start an argument, fight, whatever it maybe…but i still loved her when she was that way, most of the time..hehe

Anyway, as we both grew older she became a parent, got married, and had a beautiful lil girl.. Still her drinking kept up, and it really made life at times so hard, because when we were so wanting to help her she just kept pulling away. It was crazy. Sometimes, you don’t realize how hard alcohol can hurt a relationship until your in that posistion. I just know that it has taken years of struggle, tears, and a lot of hard work to get to the point we are at again. I missed so much, but yet learned a great deal. Working with someone to try to help them is much harder then it seems, they ALWAYS think they are right, they always have the answers, and noone can tell them any differently. It’s been a struggle, ok so i wont lie. It’s been hell, and wearing at times.

Today, she is in a relationship, her daughter has grown and has 2 beautiful children of her own. She has moved away from the state that has been “Poison” to her for so many years. She just didn’t realize that. Today as she is in a completely different state, working everyday, and not drinking.. she is a different person. The one I knew and LOVED growing up, as children, and as a partial adult.. The woman that she is now, is loving again, caring, and just a totally different person. I believe that it took that for her to realize that drinking is something that NEEDS to be a part of her life, but one that she can live and without drinking and becoming the person she was..

I am very proud of her and am thankful for this CHANGE in her life. I am not sure where she would have ended up.. Which scared us all..

Thank you for CHANGES in LIFE that have brought her back to girl I used to know and love very much. I love you sis and am very proud of you!!!!

To my Beautiful Step-Daughter Katie

Katie,

I just wanted to tell you that 6 years ago when you came into my life, I wasn’t sure if you were going to like me or not. I tried everything I had in me to give you a full set of my heart. I had so much fun with you that summer, and we just clicked. We formed a bond that was amazing to me. At that point, I knew that you were going to be a special lil gal to me. From that point on, our relationship grew and grew. Before I knew it you were turning into a beautiful girl. You have the most amazing eyes, and the biggest heart and soul. I loved that about you. The way you laugh, made me crack up so hard that tears would come. That laugh that is just as contagious as you are. We all loved you from that point and still do to this day, despite what some people may say.

We have had so many good times together I couldn’t even count them. Just hanging together, or going shopping, or having our “girl. spa days”. The list goes on and on. I will never forget those times, nor will I ever forget the love that the 2 of us shared. Or the heartbreaking times we would leave each other at the airport and you and I would both be crying… We have a bond sweety that can’t be taken away, and I sure hope that someday you realize that, or remember that.

The boys and I miss you terribly, and we think about you all the time. You have touched our lives in ways that you may not understand yet, but you will in time. I hope that we can keep in touch and keep that bond that we have made together.

I have some pictures of you, from this summer that i have put in my room and look at and think of the fun things we were doing when they were taken. I’ve also left your jewerly box, and the rest of your things as you have left them. Just can’t put them away yet. I am hoping that at some point we can see you for a few days..

I love you so much sis, and as I said.. we have really missed talking to you. Please feel free to call or text at anytime you want too. We LOVE hearing from you.

I love you to the moon and back, and always will..

Amy