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…

 

2011 Coming to an End!!!

I never thought in my wildest dreams that I would be SO GLAD to see a year end.  However this is one year I NEVER want to repeat itself.    There have been many tears shed, many happy ones as well.   It’s just been a rough year.  My Divorce, however that is something that completely renewed me.  I have felt blessed and refreshed because of this.  I truly look at myself and wonder, How in the hell did I EVER live that long, being sulky, sad, down more then up.  Furthermore, how did I ever live the way I did for all those years.  It was hard let me tell you.  Hard for so many reasons.. I won’t go into those but.. I’m just happy that it is over.  I am myself again, I love, cherish, adore, and just live again!!   LOVIN LIFE is what I am doing..

 

Then my dad had to have surgery to repair a rotator cuff, and muscle that had fallen as well.  That all went well until the next morning, when he was hit with a stroke.  I had felt like my world had been turned upside down and the thought of losing him was truly more then I could handle.  I had already lost my biological dad when I was 20.. I didn’t think that god was that cruel to take another father from us, let alone another husband from my mother.  Who by the way, is the most caring, loving, tender, sweet gal you would EVER want to meet.  Too bad I didn’t take more after her..LOL   So dad ended up getting flown to Peoria, and stayed there pretty close to 3 weeks.  He has recovered very well, and I am so proud to say he is doing Amazing.  Thank you mama for being right there beside dad through all of this.  You have been one tough cookie!!  He’s so lucky to have you, just as you are him!!!   Thank you thank you!!  ❤ ❤

 

Then next comes my grandma..87 years old and just one sweet lady.. with the mouth of a sailor.. HAHA  just kidding, but if she hangs around me much longer its exactly whats she gonna have… hehe.

She decided that she wasn’t going to eat and all that jazz, she didn’t want to and ended up sick.. in the hospital and got taken to Rockford and had surgery herself.  She came out of that as beautiful as she went in.  She is now recovering from all of this, along with rebulding her strength and all of that jazz in a rehab center for 2 weeks.  She is my baby as i call her, and I will of course be with her until my grandpa is ready for her in heaven!!  I told him however, she probably needs to wait another mmmm, 10 years…LOL   His spirit talks to me and tells me, that all will be ok.   For those that don’t believe in the spirit or the angels, I am truly sorry..It’s an amazing thing!!

 

On to Me, yep me…lol  I have been really struggling with my own crap this year on top of everything else that has gone on… My RSD has been as bad as it could possibly be for me this year.  I have had more ups then downs, however.  I try to hide so much.  I let myself get lost in this little cloud that I can do anything.  WRONG, I can’t but i keep on pushing along.  I have too, I have boys to keep up with, family that I need in my life, and so I just go on.  Sure there are days I can do nothing, but lay in my bed and cry, or bitch because i am hurting so bad.. and sometimes even a scream will come… I Hate those times!!!

 

Overall the year needs to just be done with, and I will be the 1st one to admit I can’t Wait for that HELL YEAR to be over with…

 

I truly believe that 2012 is going to be the most Wonderful year of all.  I am looking forward to starting fresh, enjoying the nice breezes that blow thru and just living my life peacefully.   I hope that all of you have and make the best of 2012.. It’s going to be the best one YET!!!

 

 

Please DON’T SAY….

Things NOT to Say to Someone with a Chronic Illness

10. You can’t be in that much pain

9. Stop being lazy and get a job. …

8. You just want attention.

7. Your illness is caused by stress.

6. No pain then no gain!

5. It’s all in your head.

4. If you just got out of the house!

3. You are so lucky to get to stay in bed all day!

2. Just pray harder.

1. But you LOOK so GOOD

 

If you have ever been in Chronic Pain there are a couple of things you NEVER want to say to someone that is on a daily basis.  First of all the HELL we go through everyday of our lives is something you probably will NEVER feel.   The burning, stabbing, bee-stinging, glass shards on the bottom of your feet, knife blade cutting thru you.. If you have never felt these things 24/7 then you have no idea where or what it feels like to walk in “OUR” shoes.   I wish i had the chance to be LAZY and lay in bed all day, and no have a job.. but in our world, laying in bed all day, is NOT what you think, many times it is laying in fetal posistion crying in pain, or begging someone to just shoot us.. Really, if you think that is being lazy…Then So be it!!!

If this shit was in my head, or because I am stressed out again.. not something we want to be, because it just adds to the pain we are already in and creates more.  Oh, MORE PAIN.. how can that possibly be?  Well, take a look around.. I see people in pain a lot of days, but will i go up to them and say oh jeez, you look so good… Yeah MAYBE if i am looking for a black eye, bloody nose, or Fat lip…

 

We have all of this to thank to a lovely condition that we get from, stubbing a toe, getting stitches, slamming our hand in the door, with a hammer, breaking an arm, leg, yes.. the slightest things can get you the same Lovely disease that i have.. COMPLEX REGIONAL PAIN SYNDROME!!!

 

Never heard of it?  Look it up, Google, Yahoo it, whatever you need to do.. DO IT.. EDUCATE YOURSELF AND YOUR FAMILY MEMBERS!!!!!  THE MORE WE EDUCATE PEOPLE THE MORE OUR DISEASE IS GOING TO BE KNOWN… DON’T just say stuff like this to someone that is suffering so bad, ask, learn and EDUCATE.. you will be doing all of us a favor…

 

Peace!

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!!!!

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!

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

It’s been a few days…

I figured today would be a good time to write.  Today I learned alot, while being awake a couple of hours and sleeping just as many.

Have you really ever stopped to think about why someone would want to ruin someone else’s happiness?  Why do people live on drama alone?   How do you look at Drama?  What Classifies drama to you?

To me, Drama is someone or something that continues to try to stir up shit, despite it being over or just because they choose to hurt someone.  I thought as adults Drama should be null from our lives.  Have I been a part of it, sure.  Only because it was clearly evident I needed to play a part, did I like it, no… There are other ways around it.. For instance remove the person or persons that are causing that Drama.  Get rid of the BS that goes along with it, but when it comes to hurting someone I love, i will fight till the end.. Whether i love them or not.  I am an adult, I have been involved in the HS bullshit that is just that.. catty, bullshit.   Today, something hit me pretty hard when someone I love was involved in something that didn’t need to be.  Someone was just trying to hurt her and her boyfriend.  I don’t appreciate this period.  I am all about telling the truth and this was far from the truth as things were said and done that were complete and utterly uncalled for.   A person in their 40-50’s shouldn’t have to deal with this any LONGER.   Truth is, people need to stay out of others lives, UNLESS they are a PART of the lives of the people being affected.  Plain and Simple.  I don’t need the BS.. and neither do my family members.  Personally, I have been thru hell and back but did I put the drama out there on my FB to allow people to see what was going on in my life.  NO, and thats the way it should be.  No-one but my close friends and FAMILY knew what was going on and what was happening to me.. and that’s the way i wanted it.  So why do you insist on TRYING to make other peoples lives hell?

Get over your self, and move on.. leave the people to be happy and live their lives.. and may you do the same in your small headed, self-centered, can’t settle down lifestyle.  What a great role model you are.. and I hope that you continue to be the way you are, because honestly.. NOONE is going to want to settle down with you, being the DRAMA QUEEN you are.  I could say a whole lot more but I will leave it at that.

 

Lastly, but not least… Leave my FAMILY OUTTA YOUR NASTY MOUTH!!!!!   You are no longer part of anything, so as the saying goes… hope you rot in the same shit you made!!!!!!!!