To My Boys, Michael and Brayden with All my Love!!!

Somedays it is really hard to understand myself, believe in myself, or try to see the little bit of good I may do for you.

Living our lives has been rocky at times and yet other times, it’s been like we have been floating on a huge piece of glass and things are just or seem just perfect.  Then we realize that nothing is ever perfect, it’s what you make out of it that makes it perfect or not.   In the 20 years I have been a mom, I have made mistakes, put you through some undue stress and other times I have tried to be the Best Mom I knew how to be.  I was raised with such a loving, caring set of parents, grandparents that I sometimes felt as if I was living in a dream, but in all actuality it was real, very real.  It wasn’t until I had my 1st child 20 years ago, that I truly knew what living a dream was like.  Adding my 2nd son 16 years ago, REALLY made my life a fairytale.  I had everything I could have wanted and asked for in these 2 boys of mine.   Our lives started so well, you had wonderful grandparents, and an EXCELLENT set of Great- Grandparents.  For 3 years my oldest son even got to know what it was like to have a Great-Great Grandma.  Lucky, that’s how I felt, and very blessed at the exact same time.  Not many children get to know Great grandparents let alone a great great one.

I was so happy with my life with you boys, I have always been proud of you and what you have stood for, and sometimes I just sit down and cry at the wonderful, caring, loving MEN you are turning into.   Our lives have not always been easy, we have faced divorce, death, another divorce and many other things.  However this RSD has probably been one of the most devastating things we have been through the 3 of us.   This disease has turned my life upside down, in and out and flipped all around.   However being your Mom has been one of the BEST things I could have ever asked for.  This has also probably one of the hardest things that we could have faced together.   When I look back on the things we used to be able to do together the list was miles long, fishing, hiking, walking trails, dinner and eating together was one of my very favorite things to do.  Sit at the table and discuss our days, what we did, what happened and how it made us all feel.  Except for the one evening that I had to sit down and try to explain this RSD Disease and how it was going to affect our lives from here on out.   That was probably one of the hardest things I have ever had to endure as a parent.   I have a ton of support and I know that you both love me, but sometimes I just feel as if I have let you both down.  This disease keeps me in bed a lot of times,  instead of sitting around the table eating dinner that I may have cooked, we would talk about it.  I was very open with discussions on this subject, and I thought the subject of SEX was going to be a problem, hey that was easy compared to this one.  Much, much easier.

As I sit in my bed, or lay in here reading, watching something on tv, I have felt that I have been missing out on ALOT of both of your lives.  I feel as if I have lost that closeness that we all shared.  I feel like your mom is laughing stock to both of you.  I walk with a limp, many times I forget very simple things, and others.. I just forget all together.  However,  I try my hardest to keep my composure to you 2 as much as I possibly can.  There are days, I just want to be able to pick you up, rock you as my babies again and tell you the story of, I’ll love you forever, I’ll love you for Always as long as You’re living my babies you’ll be.  Thats the truth, you will both be my babies until the end.

What I want you to fully understand is that with my Disease.. I will “never” get over it, I will never get used to it, and I sure as heck won’t will never leave your sides no matter WHAT life tosses at us.   If you truly don’t understand this, please don’t feel bad because I don’t a lot of the time.  I want to just pick up and go on our little road trips like we always have done.. I want to hike, fish, do the fun things that your crazy fun mom used to do with you both.   I just want you to always ask me, to continue doing things with you because that is something I truly love.  It’s something that makes me feel very secure in our relationship.   This disease is progressing as you both know and understand.   It will get worse, and I will have some very rough days.  It breaks my heart when I see the look on your faces like Oh no mom, Not another day…There is nothing I can change about this right now, but hopefully soon we will be able to, and I will be able to look back at this and think…

 

So what I want you both to know right now, is that no matter HOW I change, physically, mentally, emotionally, Nothing will ever take my love for the 2 of you.  Nothing will EVER change the way I feel for you boys.  You have stood by me in some of my most difficult times in our lives, and I will always be there for you.  To care, Love, Nurture, and for any type of help either of you need.  You are my Angels, my loves and my heart and Soul and I do not ever want you to forget that.  As I stated earlier, I’ll love you forever, I’ll love you for always, as long as I’m living, my babies you’ll be.

Let’s try to make the very best of this we can, let all put our most powerful love and feet we can first, and let’s Kick this thing in the ASS.  Thank you for always being there for me, to listen to my cry, scream, yell, about this… But most of all… NEVER EVER FORGET HOW MUCH I LOVE YOU BOTH… YOU SURE DO MAKE ME PROUD TO BE YOUR MOM!!!!!

 

I love you with my heart and soul, Michael and Brayden Everly.. and as we go through this or any tough time.. That’s the one thing I NEVER want you  to forget!!!

I Love you both,

Mom

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Here we go again, and I’m not talkin about Whitesnake either…

It’s 1 am on Sunday night.  I’m all alone and feeling the same way, when online pops many of my RSD friends that are ALSO not able to sleep due to the insomnia that keeps us awake!   I believe that this is going on about 4 days now, with maybe 9 hours of sleep total.  Where does this road end?  When does the Journey that allows us all to get a bit of a break and allow us to sleep happen?  You would think with as many meds as most of us are on, that we would be able to get some sleep.   Not so much!!!

I remember when I first started with this disease and someone told me, Get all the sleep you can now, at anytime you can because before you know it.. Sleep will be a thing of the past.  WOW,  How I wish i would have listened.  Instead all i get is this saggy, baggy eye thing going on, yawning every 2 minutes and when I go to lay down…Not a dang thing happens!  I’ve tried all natural meds, I’ve tried sleeping meds, I’ve tried about anything and everything you can humanly imagine and here I still am, awake with my insomniac croonies!

We all know, that if we don’t get a good nights sleep, it turns into a hellish next day and it just keeps going on like that day after day.  You really would think that our bodies would just literally Shut themselves off after so many hours with NOTHING!  HA, yeah right!..

I am too the point where I just can’t take much more, it’s driving me to a breaking point.   I try and try and nothing seems to even come close to getting sleep.  It’s one thing after another, it continually goes on and on.   I am thankful for the friends I have made that have RSD as well, that are also a part of the insomniac club.  I don’t know what i would do without them!!!

 

 

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