"MY MOTTO"

"MY MOTTO"
LIFE...AND THE THINGS IT BRINGS

Monday, May 27, 2013

FOR A CHANGE...I WANT TO BE ME AGAIN...



            This is a pic of my mom and me, when our ages were comparable. I do believe we favor a whole lot, but I look a lot like my dad too. Just thought, I would put some pics up...and share a little of my story.  



http://www.livestrong.com/article/126939-autoimmune-disorders-attack-nervous-system/


Well, thought i would save this. I have been reading up on whatever this could be...and my first Endo..said Addison's, but then said it could be Cushing's. So, I am trying to narrow this down a bit...if, i can.
I want to really give this my all... so, the docs can do their job better. I have learned ...and know that...if, u hurt pretty much all over ur body..it could be a bit perplexing to anyone and most docs are gonna think Fibro..because it fits to them, because it is widespread pain, but I know...This is more. NOT saying fibro isn't bad...heck, i got that too. No, I just know something is taking my COMPLETE MUSCLE USE...just taking it AWAY. I have pain with every movement, i can't reach, pull, push or lay...without pain and I don't know what to do anymore. I feel, it is progressing and taking over...and NO, it is NOT because I haven't used them. It is hard...to keep me down in the bed...i fight it, but when...every little movement sends a pain...u get to where...u just slow down a bit, then when that movement gets unbearable...u keep pushing through, all the while going to docs and traveling here and traveling there...and seeming like ur getting nowhere. I am so tired of seeing docs...i wish i never had to see another! BUT, how or who is going to find what is destroying my muscles or nerves...or veins. IT feels like ALL of them...and the bones included. I am so worried...well, not worried...but concerned that whatever this is...it don't play.
I just want to be able to wake up in the morning and clean my house...turn my music on and dance around...as I clean. I want to be able to stand in front of my vanity...and brush my teeth and get ready, for the day...without being in utter agony and without the tears flowing down my face.
           Acting up with a couple of friends. Nahh...not too bad lol We had just had a good dinner and got the music playing. We had a good evening just listening to different tunes.

For a change...I want to be me again.
Me again...the person, who always was driven to live and laugh and love. I still am driven to do all those things, but I am a little slower in my movements. Yeah, I do live...right here in this spot...mostly in this bed and I would rather be out enjoying the Sunshine and feel the breeze go through my hair. Laugh..yes, of course I get some of those...and grateful for my boys....for them..and my parents, because they are the ones who have kept me a going. Well, I was also blessed with a wonderful hubby and he takes care of me. My great parents, do so much too. Mom is always cooking and trying to make sure i have something to eat and dad....well, he is a character...who is always making me smile. So blessed. So, I have love but sometimes we have to try and not let those who love us, to see our pain. I got real good at it there for a while, but the pain just grew tooo unbearable for me to hide. I have learned to grin and bear it a lot and after a while, all of us would grow a little weary...especially, if nothing is changing...but this is progressing and I am finding it hard to move at all some days, but lay and not move any muscles...if that is possible. It is not possible.
I am getting a little more concerned...yes, I guess i am worried some, because mom/dad are tired and I need to be the one...who is taking care of them...now. My boys have grown up seeing me sick and in bed...mostly. Well, Bryan was 8 when my body started falling apart and u know...us moms have stuff to do...things that make their world better...like a tickle and i am talking @ a full blown tickle attack. I like to joke around, laugh and just be mom. But, i really did those things...if, it almost killed me...i did it, because I am a good mom and I love being a mom...more than anything. My boys mean more to me than anything...more than the world even. They are my life.
Shane Michael May...my oldest is in The Army now. He is 21...good-looking and really a good singer. Yeah...both my boys got the singing from our family...and me...lol   I am happy mom, because Shane is so talented and brave. He was introduced to music...at an early age. He got to experience it...while I was singing. I was in my seventh month of pregnancy with him,..and he loved it. He was moving all around. I was singing for a Christmas party and the show was quite long. As he was growing up...we raised him around music with all the family. I was even booked to sing 4 hour shows...by myself and things were great and we all were happy...but later, things changed..and he was away from us for a long time. I can say...I have missed a big portion of his life, but it was not by my choice. I feel that I have missed most of his life...and hate it, but it was just meant to be that way, i guess. Nahh...it was because fate dealt us some ugly cards, but we can still be close. I just wished...i was the one he could've came to sometimes, but he wasn't allowed...but that is another story. 

Bryan Nicholas Elmore is my youngest and still at home. Thank God or I would have done lost it, for he has been my light...during all the dark days that I have been in. He is a good kid and is our song leader, at Church and is becoming a great golfer, does tournaments and everything. Sing...yeah, he can sing and does come across stiff-lipped in the pic, but he was being cool. ok, I guess he is lol 

Love, yeah...I have been loved and am loved and I will always love, for I never was a selfish person or mean. U know, I prayed for a big heart from God and do believe He gave it to me...Yup, because I always have been a giver and not a taker. Now, I am so sensitive...and when my Hormone goes haywire...look out, for I can be sooo touchy. I mean, even more sensitive and the least thing can do me harm...easily.
I can cry for no reason. Well, Bryan says that I can cry over a commercial. Well, I guess i could...and I actually have lol. (well, it was the progressive "Flo" commercial...and I thought, it was a movie preview...and was into it..but then, Flo appears...hehehe oh well. :o
              Bryan, my younger son...and dad..Gary. He's my hubby too of course lol. He is just a little shorter than Bryan. He is 6'1 now.  

I just don't want to spend the rest of my life...in bed. NOOOO....I have got a lot of living to do. We have got to find what is attacking my muscles and nerves and nip it...fix it or something. It feels like something is literally trying to kill me. I feel like a ticking time bomb and no one is getting in any hurry to fix me! Stuck in bed...and in pain...it is no fun and it is soooo boring too that laying here is driving me nuts. Shoot, if I can...i try to get up and do what I can, but with consequences. I pay for every move I make. Writing my pain out helps me and it keeps my mind sharp. as it can be...under the circumstances of having to take all this stupid medicine. I am bruising now...for now reason and I can hurt my own self...laying in bed. If, i rub my foot with the other one...I have to be easy or it would hurt.
This is my inner thigh and looks horrible...and I didn't hit anything...so, how did I bruise that? Really..I did not do a thing! Bruises popping up here and there and I don't have to hit a darn thing. I was on an Aspirin regime, but when these appeared...I quit for a little while.
 I have so many symptoms that it has to be more than one thing going on at a time. Well, i have been diagnosed with all of this....beeep:  CM-Chiari Malformation(due to Car Accident-hit hard on top of head)
             AVM-Arterior Venous Malformation(Doc said, I was probably born w/it...probably?) 
             "Empty Sella"-Found that these usually go w/CM's
              Mastoid Effusion- I still don't know what this is.
             T3-T4 compressed fracture-I hurt so bad at the back of my neck.
             T8-T12 herniated disks w/hypertrophy-This is mostly responsible for me being in bed, I think.
             ...and now, after seeing an Endocrinologist because I was also feeling run down and un-well.                                            Found...or he thought, I had Addison's disease, but later said it looked more like Cushing's disease. My hormones are also going crazy and it is hard enough...to deal with all of the above....by itself, without all of this too..So, keep me in ur prayers...and I thank u. I will continue to fight..."Lord Willing" things will get better. 
               
                       I was actually in a bikini...in this shot. A friend of mine talked me into posing...hahaha and at the time, thought it would fun. Now, I look back on it and am glad that I did....because I can at least see me...again...from a good point of time...in my life. :)

I just want answers...and to be able to pin-point more to the Doc, where it feels it is coming from. Maybe, give the docs more of a direction to go in...to where they need to focus on. Do u know what i mean? I can't give up...and just lay here and suffer everyday. I feel it could be "MS"...and the longer I wait to get diagnosed...the more irreversible damage could be done. But I am really trying to stay positive...and being positive is everything...like having hope. God gives me so much and I know, one day I will be able to be out of this house again...and walk, function and SING again. :)
I have been thinking @ getting the surgery done on my back..so, i can at least get up and move some. Hopefully...can get what else is going on taken care of...soon. I am seeing an Endocrinologist and a Hematologist for it, so maybe they will be able to sort what is going on in there out. I just want to live again...or at least be able to move around and do some things.
Well, I am hurting so bad right now, the thought of surgery is looking better and better to me, but just didn't want anyone cutting on me again. I really feel Prolotherapy could be the answer, but...it sure looks scary...and so, does surgery though. Prolotherapy is where they shoot ur back with some kind of sugar water...or something like that...into ur spine and it encourages inflammation, to that area. So, inflammation..encourages healing. A more natural approach and one I heard works.
I can be fixed...I truly believe that...and when, my back gets better and I can move...then, I will be able to function like a human being again...and at least be able to walk better or sit..soon. I hope, cause all i seem to be able to do...is lay down and after the first month of that...I knew, something had to give. It is pretty bad..when u have a list of things wrong with u and ur not really sure...where all the pain is coming from. Sure can't find the answer to the root of my problem...yet, but thankful prayers work...and keep me going. It is great to receive them.
It has been a long time, since I was me...but I want to be me again. Nothing is impossible and The Man Himself is watching over...so, with The Lord and His Will...I will be made well soon. God Bless always...