REALLY?!?!?!? IT’S A VICIOUS CYCLE!

I feel my life with RSD/CRPS is like a freaking Circus Tent.. Up, down, UP, DOWN.. never stays up or down for any length of time… The pain is off the charts most times, and well.. the burning stinging, glass shard feeling, You would think that I would be getting pretty used to that but, I’m Not… It don’t go away, it don’t ever leave your body. The days you wish you just could crawl out of your own skin are the days you really want to go Crazy.

Then, on top of that, lets see at the count right now… 9 different medications to help with this disease.. 9 of them that are all supposed to do different things… All 9 of them work on my like a surgeon doing a very tedious surgery. Where does it end? Ohhh then, let’s talk about the mood swings, the temperature changes, the discoloration of the skin, the pretty lil lacey look also known as mottling. Yeah, that too. Oh when we do it.. We do it right!!
To bad that so many of these things were not caused by something we have done on our own, but something that has happened to us while working, having surgery, getting in accidents, you name it… hell, drop a can of peaches on your foot… YOU’RE THE NEXT CANDIDATE…. yes, that simple… You may not think simple.. but really that’s all it takes to join our famous Groups and GROUPS of people that suffer from this HELL all over the world and has been around for 144 years and NO-ONE knows how to cure it, HA, wait… there isn’t anything even CLOSE to a cure… or help most of the time… but it’s whatever…

Yeah, I sound hateful right now.. I AM… I am pissed off that the Medication we take does so many things to our bodies… causes this or that, and can do this or that… Yeah, yeah, whatever..

The thing I am having an issue with tonite is just this… Or lemme rephrase that… This Morning.. is that the medication that I take… IF I take it causes INSOMNIA.. IF I DO NOT TAKE IT… I CAN NOT MOVE!!! Our bodies go and go and go like a energizer bunny until the batteries run out… Yeah, our bodies do the same… Nice huh? What’s the point? Do we take them? Do we not.. the sleeping pills we can take, are just as bad as anything else.. and then they don’t even tend to work…. So, Yeah, I am pretty flippin angry right now… My body is killing me, It’s on fire, its swollen… but yet… There hasn’t been any sleep in sight for 2 nights now… Great… Sooooooooo Great….

So, What are the answers? Please tell me? I am begging to know What to do to fix this problem.. what to do to HELP WITH THIS… I get the same ole same ole… just keep doing what you’re doing… YEAH CUZ IT WORKS!!!!!!!!

PEACE~~~~

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My Feelings Today.

Today has been a pretty intense day for me.  I am bundled into a massive list of things that I cannot escape from it seems.   Going to the ER last night helped so much with the pain that has been brought my way this last 2 weeks, but at the same time today.. I still have the pain, attempting to overlook/ feel it, but it is not working.  It’s a delayed reaction time I truly believe.  I haven’t slept very well, I feel lonely, agitated, agravated, hurting, alone, and so much more.  I just want to feel “NORMAL” for once again in my life and I know that this is not possible, but that’s my wish.   I am trying.  I have rejected the negativity from my life and have brought in all the positives.  There are only so many things I can write about, and this pain at times seems to take it all out of me.  

I have so many dreams I want to fulfill.  I want to be able to take some trips, move, do things with my kids that they have never gotten to do.  Most of all I just would like to have someone with me doing all of these things.   It’s so hard especially when you know that most men out there aren’t going to understand the pain, and therefore who would want to be with someone that is in pain probably everyday at somepoint.  This has really been a struggle for me along the way.  I try to do the best I can with keeping my chin up and just going on.  Sometimes as I lay in my bed just thinking of everything I am missing out on.  It hurts more then words could ever describe.  I HATE for anyone to see me like this including my family.  I know they worry about me.  I know that sometimes it’s very hard to watch them watch me.  I can see the pain in their eyes, I can feel it in my heart.  

I NEVER ask myself WHY.. if I did I would be the most depressed person on earth.  I just say to myself OK, what can i do to make this better, what can I do to make ME better.  These are the things I am working on for myself so that people don’t see that part of me.  When I am hurting, I want noone to feel bad for me, I don’t want anyone to feel SORRY for me.  This has happened to me and I will deal with it the best I can, I Promise!!!

Well, I guess that is enough of my whining for the day… Not really whining but I just needed to get it out.  Thanks for listening, reading, or whatever.  I am so thankful for the friends and family I have as I have lost ALOT of friends because of this disease I have encountered.  

Life, Kids and etc…:)

Is it possible to just ever stop wondering and just move on?  I have thought about this many times and the answer is sure.. If you are able…LOL   I haven’t quite figured that out quite yet, however, I am the happiest I have been in so long.  I am loving my life (despite this RSD and all the pain and hell it brings to your life) but I am loving spending the time with my family and friends that I have missed for so many years now.  I have realized that NOONE is worth putting yourself 2nd in life.  My kids are my pride and joy and in the last few years, they have grown into wonderful, amazing MEN.  I am so proud of them and the Choices they have made.  Even as tough as times are/ have been, the 3 of us have remained intact and supported each other through every inch of our lives.   These 2 boys of mine have brought me tears and the same time soo much happiness.  One of these days, I will be able to just return to them half of the happiness they have given to me.  

We have been through many times of turmoil, hardships, life’s hard lessons but in the end.. We have won! I couldn’t ask for anything more as far as that goes.  They truly adore each other and of course the special little lady that was introduced in our lives 6 years ago, whom they fell in love with and treated as if she was one of our own.   We miss her terribly and just hope that in time she will truly understand what we have all been through.   We love her and always will, she has been a huge part of our lives and we were so blessed with her presence.  

As you go through life it’s pretty evident that things happen for a reason, and that things aren’t meant to be, or just don’t belong.  We take each and everyday with stride and thank our lucky stars that we have been blessed into the family we have been.  Our family has been totally amazing to all of us.  

I will continue to do my best with my boys, and just hope that they continue on the right path.  They both have huge ambitions, intentions, and set their sights high.  I know that each one of them will both succeed in the life path they choose to take, and I will be right there rooting them on along the way.  

I Love you Michael, Brayden and Katie.  You have my heart and soul and I’m so proud of each one of you!!!

Getting Phunked when Phunked was plainly not WHAT I was wanting….:))

As always just another day in the lovely hickabilly household.  Where pain is our Main Game!!!    RSD 10 and Amy straight ass O.

Well, this time the pain just kept up and kept up, to a degree of such, that even taking my strongest pain-killer (to which i will NOT disclose to you..:))  I begged, I prayed, I begged and pleaded for it to just go the hell away…  I listened to music which has ALWAYS been my way out.. and out I mean, my way out of everything… I turn it up, good and loud… well just loud enough for me to be able to handle it..

As the day got longer the night was longer too, no touching me with anything, pjs, blankets, sheets nothing… I suffered through until the next morning when I talked to Mom and could no longer take it any more.   After Michael helping me down the steps which i was even AFRAID to attempt he got me to Mom’s car and off we went to the ER..  Where I met the FIRST. you hear me, the VERY FIRST  DR There that even KNEW what RSD WAS… or what it stood for… He asked me a few questions, and ordered up a shot and a pill that was the most disgusting tasting thing i have EVER had… ok, it wasn’t as bad as a cat scan cocktail but it sure the hell ran a close 2nd.   EWWWWW!    Just a FYI, quick acting Zofran is freaking NASTY.  Yeah, Big time!!  So I took that and let the ewww melt on my tongue and my hand was completely closed by this time.. the pain was too much for me to handle.  It was almost like the time the nurse putting the damn iv in my really bad arm, yeah.. That kinda pain the kind that you just can’t kick…

I got the shot, the Dr came in talked to me and told me in very strict way.. IF I would take my pain meds as prescribed on the bottle I wouldn’t be in this shape.. Yeah ok… It says, every 4-6 hours AS NEEDED… Dude look, I may be a sissy about a LOT of shit, but pain for some reason has become tolerable to a certain extent and I will take 1 a day if that is all I TRULY NEED… So back off jack, I know what my body handles…

Well… This time, I thought well since this ER dr was the 1st one to ever recognize RSD and KNOW About it maybe i ought to follow his instruction.  I did just that, too bad it put me into an almost 3 day medicine induced coma.   I couldn’t even touch my own face and feel it.  I had NO idea what was going on around me.. and that was WHEN I said BULLSHIT on this DR TOO…  I scared the hell out of my family, myself and little did I know that I should have ONLY listened to myself in this situation… God, Why?   So I take myself off of the pills completely here it is 3 days later, I am back to being me.. silly, talky, crazy, fun most of the time ME…  I had to write this, to get it out for 1… for 2.. I never want anyone to EVER experience the HELL I went through on those days.  and 3.. When you know your body well.. PLEASE listen to it!!!!

I have learned a very scary yet just another HELPFUL instrument in my Journey of RSD.   I hope that along the way through your journeys you can also help someone who may need it, but also be in tune to your own inner self and know when to say when… It’s no freaking wonder people get addicted to this shit man,  You have NO FEELING, truly i mean for real…NO FEELING PERIOD!!!!!

 

In closing I say with most light in my heart I possibly can… It’s bad enough we have to battle this monster.. but place yourself somewhere else for a minute and think… We need to walk this walk with the most positive attitudes we can obtain from this EFFIN DISEASE… and yes mom I didn’t say the full F BOMB…hehe     Have a little more love, and share a little more love… That my friends is what friends are for….<3 ❤ ❤

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.

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

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!!!