First of all... i want to say how blessed we are, to be who we are...and to have what we have. And...i don't mean material things...i mean comfort, love, peace in ur heart.
We all have our battles and i guess, each and everyone of us...has something that weighs heavy on our minds and our hearts...but we deal with it, the best we can...and move on, don't we?...and God is The One...who gets us through, each and every one. We really should count our blessings. :)
Once, I ...was able to go and do as i wanted, but i was young and healthy...and didn't have time, to be sick. I was too busy enjoying life and all it had to give, but now, i definitely am not healthy and i appreciate ANY good moment. Yes, my pain...has humbled me...more than i could ever begin to know. My time...is moving on.
I don't get the luxury...to even make plans to have fun. I am not able to use my legs, to stand up straight or to use my arms to fix my hair...and it is very frustrating and very very painful...when, i brush my teeth. It is so hard to stand in one place...my legs hurt so bad and i cry almost every time. I am sooooo tired of it! ALL I WANT...is to be healthy again. There are so many things i want to do, but can't. :P
Now, mostly bedridden...but once upon a time...i really loved living my life. I know, if i were well...i would be so busy, spending it with my boys and all of my family...fishing...and laughing. I know, i would definitely...be singing again too. We would be having such a good time living. Life would be good, but this time...it would be different. I learned a lesson...i will always put GOD first. :D
IN THE LIST, TO THE LEFT , WE HAVE BASICALLY ASKED FOR ALL OF THESE AND MORE. I MUST SAY, FROM EXPERIENCE...GOD DOES MAKE US STRONGER, WHEN WE DO STRIVE TO COMPLETE THESE QUALITIES AND IN TURN, WE GIVE HIM OUR FAITH...OUR LIVES...AND HE PROTECTS US. WE, BEING IN HIM...EMBRACE THE OPPORTUNITIES...HE PROVIDES.
AFTER, BEING SICK FOR SO LONG...I REALIZED...I NEEDED TO APPRECIATE MY LIFE AND WHAT I HAD...AND TRY NOT TO EXPECT A MIRACLE. ALTHOUGH, I KNOW IT IS POSSIBLE, BECAUSE "NOTHING IS IMPOSSIBLE, FOR GOD".I BELIEVE, WE HAVE TO KEEP THE FAITH, BELIEVE AND STAY CLOSE TO GOD'S SIDE. WHEN, WE DO...WE CAN MOVE MOUNTAINS.
I MIGHT NOT HAVE MY HEALTH, BUT I KNOW...I AM STILL BLESSED, BECAUSE I KNOW THE LORD. THINGS ARE JUST EASIER TO BEAR...WHEN, I HAVE THE LORD TO WALK WITH AND TALK WITH. HE IS ALWAYS BY MY SIDE.
SO, KEEP LOOKING UP...AND KEEP THE FAITH. WE WILL MAKE IT...HE WILL SEE US THROUGH ANYTHING WE ASK HIM FOR. HE COMFORTS US...IN TIME OF NEED AND CARRIES US...AT TIMES.
ALL I KNOW IS...THE DOCS I HAVE BEEN SEEING...SEEM TO REALLY BE TRYING...in a way, BUT WHY HAVEN'T THEY JUST PUT ME IN THE HOSPITAL...AND FOUND THE ANSWER TO THIS MEDICAL MYSTERY THAT IS A NIGHTMARE...INSTEAD OF THIS TAKING FOREVER TO FIND THE ANSWER.
LORD, I HOPE AND PRAY THEY WILL FIND THE ANSWER SOON...AND CAN FIX ME.
They definitely, need to figure out what is completely wrong with me, because i don't feel they have found what THE ROOT OF THE PROBLEM IS. All i know is...that it feels it is taking my life from me, because it feels like it is slowly trying to kill me. Yes..the pain can be unbearable at times and Lord knows...i want to know what this is that is always pestering me...with pain. :P
This illness has taken so much from me. Look at all of the time i have lost with my family, because of it! They haven't found the main reason...i am so sick, i just know it. Reason being is that I am not getting better...i am getting worse, if anything. So, if it were the medicine that were suppose to be helping me, then i should be able to get around and do okay, but i am still in pain...and in bed. Well, either i need surgery or try something else...i think.
The docs so far, have diagnosed Fibro, Spondylosis and my Endo thinks i have Sjogren syndrome too. Which, would explain a lot of things.
I feel, something is terribly wrong in there!...and what so bad is...it is taking so long to find it, but a lot of my body tests have been focused on Spinal issues. Maybe, it is the kind of doc i am seeing? All i know is...that i really truly believe, i could be repaired... :/
I experience so many symptoms...that hit me here and there with burning, pinching, itching, spasms, tremors, cramps, knots of all kinds...and all of the crawly feelings too, not counting all of the joint pain, back and neck pain to boot. I am broken...can i be fixed? "Lord Willing"...i can. :)
(keep me in ur prayers...if, u would. I would appreciate it so much. Thank u :)
PAIN...WILL DEFINITELY HUMBLE U...
Dx'd w/...Fibromyalgia, Spondylosis, CM(Chiari Malformation)...which, i truly believe i need surgery on...to repair. Pinched nerve in my neck, AVM(Arterial Venous Malformation), Myofascial pain syndrome and something in my back that one NL found...But, he didn't know what it was. So, he labeled them disk herniations, but i am sure he(NL) SUPPOSE TO KNOW WHAT A DISK HERNIATION LOOKS LIKE AND...he has seen plenty of them...so, why label it something...it is not?! THAT'S WHAT I AM WONDERING(?)...and WHY WOULD HE TELL ME THAT HE DOESN'T KNOW WHAT IT IS AND THEN, WRITE SOMETHING ELSE ON MY REPORT? LOOKS LIKE THAT IS EXACTLY WHAT HE DID. NOW, OTHER DOCS WILL LOOK AT THAT AND THINK...THAT IS WHAT IT IS. UNTIL, IT IS OTHERWISE PROVEN. WHY WOULD HE SAY AND DO THAT? MY HEALTH IS AT RISK HERE!. HE ACTUALLY TOLD ME OUT OF HIS MOUTH.."IT is out of my area of expertise".
I really hate being sick and stuck here...and wish there was a diagnostician like Dr."House" available...i sure would see him and feel he would make me better. There are times...where i feel someone like him...will be my only hope of getting well.
I believe with all my heart...i could be made well again, if we could just find...the root of the problem. I really believe, one day i will be able to stand and walk without worrying @ falling or my legs giving way. Where are u Dr. House? :)
Being mis-understood...is a hard thing and i know...a lot of people don't understand...but IT is very real...and sometimes, very painful.
I do know God understands me...and that is good enough. One day, whether good or bad...the docs will find whatever it is that is plaguing me...and i will be relieved. I hope it is good news...i have been waiting so long...and i pray The Lord gets me well.
It has been a long time now and think sometimes...will i ever be like i once was.(?) Maybe, when it is the right time...i will be made well again. I know, a lot of people don't understand...and neither do i, but u better believe i am doing all i can to try and figure this out, by researching my symptoms. Well, my eyes are getting really blurry... and it is hard to see and my hands feel number now. So, i am gonna wrap it up.
I do know, whatever this is...is pretty bad or must be...because i can't do much of anything anymore. Last night, I lost use of my left hand. I couldn't make a fist and it opened and closed half if, not mor than my right hand...when, i opened and closed them as fast as i could. My left hand just couldn't compare to how my right hand could move. It felt so strange and weak...scary. :/
I must say...it seems like multiple systems are being affected, in some way. I know, my sensory and my my motor are affeted...but i am a wrecked lot and could sure use ur prayers. Thanks again.
This could even be A CENTRAL NERVOUS SYSTEM OR maybe, a PERIPHERAL NERVOUS SYSTEM TOPIC- IT IS DEFINITELY NEUROLOGICAL, IN NATURE and MY NERVES ARE ELECTRICAL AND DEAD IN SOME AREAS.
Posttraumatic Syringomyelia
A posttraumatic syrinx originates at the site of spinal cord injury (SCI) and extends rostrally or caudally. Such a posttraumatic syrinx is seen in 3 to 8 percent of SCI patients as neurologic decline (4–7), in 12 to 28 percent by MRI (7–12), and in 17 to 20 percent at autopsy (13,14). The clinical syndrome, manifest as neurologic and functional decline, is known as posttraumatic syringomyelia(PTS); it is also called ascending cystic degeneration or progressive posttraumatic cystic myelopathy. Small intramedullary cysts that do not extend longitudinally over time and that do not cause neurologic decline are seen in 39–59 percent of SCI patients (12,15,16); these are called posttraumatic cysts.
I WONDER...COULD THIS BE WHAT THE NEUROLOGIST SAW IN MY BACK...AND DIDN'T KNOW WHAT IT WAS?
DOCS HAVE FOUND CYSTS ALL OVER MY BODY...EVEN TWO(2) IN EACH OF MY BREASTS...SO, WHY CAN'T IT BE POSSIBLE? IT IS FIXABLE...SO, I WOULD BE READY FOR SURGERY, IF IT MEANT SOME OF A LIFE BACK. (Below..is the link, to the rest of POSTTRAUMATIC STRINGOMYELIA)
http://www.ncbi.nlm.nih.gov/books/NBK9474/
SINCE, I AM HAVING SO MANY HORMONAL PROBLEMS...ON TOP OF ALL OF THE NEUROLOGICAL ONES, I FOUND AN ARTICAL ON "CUSHING'S"...SINCE, ONE OF MY ENDOCRINOLOGIST MENTIONED THAT IT COULD BE A POSSIBILITY. MAYBE, IT COULD TIE ALL OF IT TOGETHER.
MY CORTISOL LEVEL WAS ONE(1) AND NOW, AFTER TAKING HYDROCORTISONE(SYNTHETIC CORTISOL REPLACEMENT) IT NOW SHOWS, FROM MY BLOOD WORK THAT MY CORTISOL LEVEL IS 5.8, BUT I AM STILL SICK.
(Below, is link to the rest @ "Principles of Endocrinology"
http://www.ncbi.nlm.nih.gov/books/NBK22/
Their functions can be broadly grouped into several categories: reproduction and sexual differentiation; development and growth; maintenance of the internal environment; and regulation of metabolism and nutrient supply. A single hormone may affect more than one of these functions and each function may be controlled by several hormones. For example, thyroid hormone is essential in development as well as many aspects of homeostasis and metabolism, whilst glucocorticoids, such as cortisol, are important both in growth and nutrient supply and are also modulators of immune function. The roles several hormones play in one function is exemplified by the control of blood glucose which involves the pancreatic peptide insulin and its counter regulatory hormone, glucagon, as well as cortisol, growth hormone and epinephrine. Hormones act in concert and thus, an abnormality in a controlled variable, such as blood glucose concentration may result from defects in the control of any one of several hormones.
The secretion of hormones is subject to negative feedback control, and there are several ways by which this is achieved (Box 1.2). Feedback loops may involve the hypothalamo-pituitary axis that detects changes in the concentration of hormones secreted by peripheral endocrine glands or a single gland may both sense and respond to changes in a controlled variable. The integration of feedback loops involving several hormones may be complex. Disturbances in feedback loops are clinically important and their significance in diagnosis is pivotal.
I HAVE TRIED TO LOOK AT THIS FROM EVERY ANGLE...AND YES, EVEN LYME DISEASE IS SUSPECTED, but tests negative so far. SO IS MS POSSIBLE, BESIDES CUSHING'S...ETC.
I HAVE CONCLUDED TO THIS BEING SOME NEUROLOGICAL DISEASE...OR MAYBE, IT..."IS" SOMETHING THAT CAN BE FIXED. I DONNO...THAT IS WHAT I AM PRAYING FOR...ANSWERS.
I MUST KEEP PUSHING FORWARD...TO FIGURE OUT WHAT IS MAKING ME SO SICK AND IN PAIN...EVERYDAY. THERE MUST BE AN ANSWER...SOMEWHERE. SO MANY POSSIBILITIES. :P
*THIS PAGE IS NOT INTENDED TO TRY DIAGNOSE, BUT INFORM OF A PERSONAL BASIS. (None of the information...written by me should be used, as a diagnosis of any kind or be taken out of context. Unly use information, for learning purposes only.)
"Life...we have our own road...we take and make our own results."
