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EDS & Hypermobility Spectrum, Health and Wellness, Human Interest, Thoughts and Expressions

Not In My World

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Not in My World!!

My MS Journey

Exert from Chapter Four in my Book,

“Walk With Me My MS Journey” © 2010

By JD Author, Reporter-Journalist

 

Have you ever heard stories of people having things happen to them, and thought to yourself, “that would never happen to me?”  “Not in my world.” I had thought it many times in my younger adult years, but then reality sets in and we come to the realization that we are not invincible.  We are not exempt from whatever God has planned for our lives, whether good, bad or ugly, they happen.

A few months after my brain and spinal surgery, I was managing but wondering why my recovery was taking far longer than anticipated and new symptoms were erupting.   Within weeks things began spiraling downward fast, and I was sicker than I had been prior to surgery.  Back to the doctors for repeated testing and probing I went.

While awaiting the results of months of testing, the downward spiral began to progress faster, and I was finding myself more confined and limited in what I could do.  I was either always too dizzy, having seizures, migraines, tremors, loss of coordination, and my immune system was treating my body as if I had been invaded by an alien, and shot craps on me repeatedly.  This was really starting to suck.

Now was not the time for my health to give way.  I just couldn’t be sick.  I had two kids getting ready to graduate from high school, one was getting ready to join the military as soon as he graduated and two heading into their sophomore year of high school.  All of them busy in sports and extra-curricular activities, and I as a mom, just had to be there to show my support and cheer.  Yet I barely had the energy or ability to drag my butt out of bed to drive them to school, cook and do laundry.  Good thing in their younger years they did learn domestic skills and even better there was a Wendy’s®, McDonalds®, Pizza Hut® and Subway® all within a mile of the house.

Some days I felt like a jackhammer had just chiseled away at my will.  I was often wondering, since when do medical conditions come in two for one package deals?  But ALAS, I am a real winner!  I have THREE. I began to wonder if the insurance coverage that I had did offer special discounts for specific services, so were they in cahoots with karma, to give me this multi-pack special diagnosis deal?  JACKPOT!  Well at least I guess it had to be better than not having any answers, and not knowing what was the cause of my medical problems.  Once again I was then scheduled to see a few specialists and begin a treatment plan.

I am a person not truly religion specific yet a firm believer in faith and that God and Karma have a reason for everything in life.  How we choose to use them whether good, bad or ugly determines the benefit or downfall of every situation and life event.  Whether it is short lived or permanent in our current existence it can happen.

I call them blessings in disguise, because whether easy paths or rough terrain, I learn and grow from them.  Even on days when I feel I am held under duress by a body that is in conflict with my plans for fun.

I battled many feelings of anger and resentment and I was not sure at whom it was to be directed.  I just knew I was angry.  I had so many things I wanted to achieve, do accomplish, and I could not be tied down with a medical condition that set limitations!  This just could not happen to me, not in my world!  Amazing how angry we can get and lash out at those around us when we are searching for answers as to why we of all people were chosen to have this happen to us.  We hear about other people experiencing it, but think silently to ourselves that we are infallible and that it can’t happen to me.

Then reality once again rears its ugly brow and snaps one back into the zone, forcing you to sort out everything and start searching for the life lesson in it all.  Talk about a good bitch slapping!  Life was giving me a good one, and I knew it was time to wake up and start paying attention to what was to be gained, learned and experienced and use it to grow as an individual.

 

Have you every truly wondered,

Why life doesn’t always seem fair?

When you’re hoping for a rainbow,

Why you find clouds of pain or despair?

~

You wonder to yourself,

Why this would be happening to you.

Is this just a bad nightmare?

Really it cannot be true?

~

You seek answers through the anger,

You feel the emotional burden of pain.

Yet still remaining clueless,

In the long run what you might gain.

~

Close your eyes and listen

To the words you can hear said.

The message spoken clearly,

It’s not just random voices in the head.

~

There are lessons to be learned,

Refocus often if you can.

This is destiny and you must grow,

It’s all part of a bigger plan.

~

For each challenge that seems dreary,

Will eventually open up your eyes.

Then you can truly understand,

There is a Blessing in Disguise.

©Copyright protected 2015: NWU Local 1981

©IAPP Author/Journalist   Press ID # 1007490467

EDS & Hypermobility Spectrum

I HAVE WHAT ??!!

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I HAVE WHAT?!?!

My Diagnosis Experience

Exert from Chapter Three in my Book,

“Walk With Me My MS Journey” © 2010

By JD Author, Reporter-Journalist

There I sat in the neurologist’s office, nervous as hell, feeling like a cow set for slaughter, trying to soak in the words the doctor had just spoken to me. I knew that something was going on inside my head, but just was not sure what.

It started with headaches almost daily that had progressed into migraines nearly 2 times a week. I was having strange numbness and loss of feeling in my feet and hands.  I would have moments where I would lose almost all of my vision for spans of time, and it was beginning to scare me.  I knew I had to get answers before it got any worse.

I was not prepared for what I was about to hear. Then he told me what they had found. I could not seem to grasp or absorb it, so I asked him to repeat it again.  He stated calmly, “You need to stop working.  We need to open up your skull and upper spinal cord and expand your spine and cerebral cortex that is being crushed slowly due to lack of adequate room for spinal fluid flow”.  At least one of us was calm, I felt like I was ready to explode at the seams.

The first words that flew out of my mouth were, “are you kidding? Cut what? Do I look like a hamster you can experiment on?”  Then he explained it was a condition where evidently the bones in my spine and skull stopped growing before my cerebral cortex and spinal cord did and eventually over the years the lack of space had taken its toll.  I now knew the cause of the repeated migraines I had suffered for close to two decades.  I had a size seven innards stuffed in a size six frame.

Now there were decisions to make.  I was told I can have the surgery real soon or risk the possibility of eventually becoming paralyzed.  The surgery itself was risky.  I thought to myself, well do I have the surgery and risk dying in the operating room, and being asleep and not knowing it, or do I opt to not have surgery and die suffering?

It was a tough decision either way, because at that time I was not married, and the mother of four teenagers that really had no one else but me or my boyfriend to depend on.  No family was available to take on the commitment of raising my kids for me.  They couldn’t return to their biological father, his parental rights were terminated years before for in-discretionary reasons.

One month after hearing the news I lay in pre-op listening to a nurse telling my close friends and boyfriend that there is a risk that I may not make it out of surgery.  It was delicate and risky to cut into the brain stem and spinal cord.  They gave me a mild relaxer and told me there would be a few hours delay due to an emergency surgery.  I laid there doubting my decision, feeling fear, praying to God to help me get through it ok or survive at least long enough to watch all my kids graduate from high school.

My friends tried to comfort me, but as time passed the calming drugs wore off and I began to get very restless and agitated.  I started to try and get off the gurney and haul ass out of there.  Where would I escape to?  I was donned in a fashionable hospital gown, ass hanging in the wind, barefoot and dizzy.  The nurse standing there reminded me of some guru, ball-breaker, sporting a long needled syringe, and said it was time for me to go to sleep and it would all be over soon.

At that moment I definitely felt as if I had just stepped onto the screen of some “b” rated black and white horror flick.  There was never a stronger urge to definitely be walking in someone else’s shoes, whether they fit or not.

I woke up in the intensive care unit feeling like I was laying on something that felt like cold steel, I was totally unable to move.  Panic set in.  “Was this the morgue?”  “Am I dead and don’t know it?”  I tried desperately to move and see where I was.  All I could see was the light above me, and I could hear the sounds of voices in the distance.

I yelled, “help… someone help me”.  A nurse came rushing in and told me not to yell.  I of course, reassured now by her reply, knew I was alive, and snapped back quite curtly, “it would be nice if I were not freezing to death laying here unable to move”.  She smiled at me and explained that I would be able to move when they removed the steel support plate from under me and the paralytic drugs they had to use during surgery wore off.

Then of course she covered me up with warm blankets, told me to buzz my button if I needed anything, and bailed out leaving me with the call button hanging above my head, and out of reach.  I thought to myself, damn karma is a bitch.

Within two days I found myself ushered out of the hospital in a wheelchair, and home to start my recovery.  I had an HMO, God forbid I overstay my welcome!  I went home barely able to move about.  I could not even manage to sit up or stand without help, let alone find my way down the hallway 15 feet to use the bathroom on my own.  Thank God for good girlfriends!

My great friend Tammy Andrews came to stay with me for a few days. She helped me out a lot.  She cooked, cleaned and kept an eye on my teens.  I knew they said it would be a long recovery, but I had to get back to my routine, I had my kids to look after, places to go, things to do, a life to live.

A week later, stumbling, klutzy, and resembling a toddler taking baby steps, I made my way back to being a mom.  What I thought was a road to a new beginning at that time I did not know would be the start of many hard roads ahead medically.

The surgery was the easy part and the harder challenges were to come.  Especially after the news that the surgery was not very successful and there was no other surgery that could change anything or alter the medical concerns soon to follow.

A copy of my book is available @WALK WITH ME

©Copyright protected 2015: NWU Local 1981

©IAPP Author/Journalist   Press ID # 1007490467