I AM WHO I AM, but don't know who that is anymore...

I am literally giggling to myself as I write the first lines of this blog.  It's hard to get a feeling down in writing, but I will try to explain what I mean.

If you know someone who is sick, and I mean REALLY sick, Cancer, Chronic Pain, Bi-Polar Disorder, or (INSERT ILLNESS HERE)...**ANY disease, condition, state of mind, or even just getting older can go in the parenthesis***, then you may have heard them say something to the effect of: "I used to be able to ________..." or "I wish I could still ______." 

Well, mine was; "I want to be a bad b*tch again".  Sentimental, right?  Well, if you know me, you would understand. 

I was crying at the time, on my husband’s shoulder, so imagine it was the most pathetic sounding thing you have ever heard.  Runny nose, puffy face and all.

We have since made a joke of it, and now, every time I accomplish some small task that felt like I climbed a mountain, my husband will make a sad face, and sniff, "I want to be a bad b*tch".  We both giggle, and I take my satisfaction in the most trivial of tasks; finishing a load of laundry, taking the trash out, vacuuming the living room, or even just NOT losing my cool on any certain day.

Those are the things I am proud of, on a daily basis.  Some days, I cannot celebrate, but some days I can.

The OLD me:

I was tough.  I was hardened over the years by a number of things; nasty boyfriends, verbal and physical abuse, strained relationships, and being deserted by people I thought I could trust.  I put walls up stronger than carbon fiber.  I may have been tough, but I was alone.  For a LONG time.

I chose a profession based on the simple fact that someone told me I couldn't do it.  I bought a pickup truck and a ladder, and started painting houses.

I chose to do things the hard way, because I could learn all of the flaws, and perfect my technique.

I did this with everything in life, not just painting. The hard way.

ABOUT ME:

A little background; I was a tomboy by choice. 

My father is a brilliant craftsman, blacksmith, and furniture designer...but, when I was a kid, he was just a guy who made metal "stuff". 
I roamed around a fabrication shop, surrounded by anvils, sheet and tube metal, and played 'hide-and-seek' in a sandblasting booth.  I was also surrounded by a shop full of metal-smiths', who had a way about them that I loved.  They always spoke their mind, were tough as nails, and if they got injured, they grabbed some super glue to fix lacerations and moved on about the day.

They were my idols.  They made beautiful works of art out of sheets of steel, aluminum and copper.  Chandeliers, tables, even planters made from lead poured into a mold.  And as I learned the ins and outs of how they made these beautiful things, they were finished to look like wood, or marble.  I always thought it was odd that someone would buy an aluminum table, and have it painted to look like it had a granite top.

These guys, lead by my father, made functional works of art that would eventually adorn the lobbies of 5 star hotels, conference rooms, rock-stars homes, and the cover pages of every magazine from Southern Accents to Country Home.  I was proud to see the hard work and dedication of hand-made furniture on a page.  I was proud to be part of Niermann Weeks.

All made by a group of rowdy, kind hearted guys that left work looking like chimney sweeps every night.

That was what I looked up to.  My mother wanted to dress me up, and comb my hair…I wouldn’t stand for it.  I wanted to be one of the boys.

I got my work ethic from them.  My dad had a way about him; if you were on time, you were late, and if you were 5 minutes early, you were on time.  A lot of it didn't make sense when I was a kid, but it sunk in as I grew into a woman and a mother.  Never lie, never cheat, and never break a promise.

I learned that friends could be closer than family, and 'Uncle' was a relative term.

The problem is, it took years to figure this out.  My father actually chose to be my father, and although not blood, still treated me as his own child.  As a teen, I was horrible to him.  Not just a little bit.  I resorted to “I hate you.” And “YOU are NOT my father.”  I was rotten, spoiled, and had no idea what he did for me. 

 All of the things I love about him didn’t sink in until I was a grown woman. 

The day my first daughter was born, I called him crying, and apologized for every single thing I ever said to harm him.  The most beautiful day of my life, I felt like the ugliest person in the universe.

Thankfully, it wasn’t too late to redeem myself, and we have a good relationship to this day. That’s what love is.  It’s unconditional.  No strings, no tradeoffs, just love.  It took me a long time to figure that out.

Fast Forward into my late teens/early 20's, I now owned a small business painting houses.  I was my own boss, because I knew I didn't play nice with others.  I made my own hours, could be 'Type A' and no one could give me grief about my control issues.

I was in control of everything.  I made lists, I organized job sites, materials, employees, and eventually my best friend became my business partner, who I then realized was the love of my life.

I was in shape, and could haul 8 pressure treated 2x4's on one shoulder in a snow covered back yard without breaking a sweat.  I laid tile, carried ladders, hung drywall…and I loved it all.

If I got injured on a job site, duct tape and a shop rag would be just fine as a bandage. 

I was a Bad B*tch.  Not just because of the physical stuff.  I was respected for working as hard as anyone else.  I earned my title, and always made sure I never asked for help.  I was also fair.  As a friend, as an employer, all across the board.  I had a set list of principals (thanks to my father) and I stuck to them.  I didn’t forgive mistakes, because I had learned that once I had forgiven someone, I later on became their doormat.  So, people knew that if I was angry, to make a very wide berth.  I did NOT like to be taken advantage of, because I already had years of that in my past, burning my soul. 

I used to call it my “engine”, (the anger/hurt) and every time I was burned, I worked harder, faster, and had to prove to myself that I could do anything without people hurting me.

I could do anything.

FAST FORWARD to the present:  I can't do ANY of those things anymore.  It isn't just the physical part that I cannot handle, because my mental acuity is no longer there either.

I am a type 'A' neat freak, who loves working with my hands, stuck in a broken body, disorganized house, and murky mindset.  I can write all the to-do lists I want, but I lose them amongst my messy  desk, and medicinally clouded brain. 

Thank the heavens for Smart Phones, or I wouldn't know what day it is or when I need to be at the neurologist, pain specialist, physical therapy or infusion session.  I even have multiple alarms set for simple day to day tasks; leaving on time to get my oldest to school, medication reminders, and even an alarm to let me know when to start dinner and homework. 

My dilemma- Who am I? 

I know who I USED to be.  I know what I USED to be able to do. 

But now, I feel that the things that define me as a person are all up in the air.

When I was 20, I thought I knew exactly who I was, and what I wanted to do...I was going to run a small remodeling company, eventually hire only the best craftsmen and women to run the company for me, and retire at 45.  All on my own.  I was never going to get married, and children were NOT in my future. (That's what the doctors said anyway)

On my 24th birthday, against all odds, I brought home the most precious, life changing miracle that ever was; a beautiful baby girl. 

Then, against all of my own personal guidelines for my life, I married my Prince Charming...a man who broke every last one of my rules. 

I swore I would NEVER:
...be in a relationship with a Marine, or former Marine again.
...get involved with a musician.
...mix business and personal.
...have kids.
...get married.
...let someone take care of me.

Well, this perfect person, my husband, broke all of my rules and took a sledgehammer to all the walls I had put up.  He taught me that I could make all the plans I wanted...I just couldn't always count on them to actually happen the way I wanted them.

He taught me that PLANS are for people that need control, and some things, well, you just can't control.

I thought I knew what he was talking about.

Until I got sick.

Again, my life changed... 

For years after I was rendered useless, I still tried to work.  I booked jobs that I couldn't handle, thinking that the doctors would figure it all out, and cure me someday.

So, I am trying to use my past life experiences to figure out what to do next.

Who am I?  What have I become?  What do I have left to offer the world?

When you are handed a diagnosis such as mine, it's hard to plan on a bright future, when your days are filled with pain.  Everything is so cloudy on a day to day basis, so I don't know what to do.

If you are going by hours spent, I have a full time job; I am a professional PATIENT.  Right now, it's what I'm good at.

I’ve actually become REALLY good at it. Other than finding Doctors that I love and respect, I have figured out the insurance companies short-comings, and try to fill the gaps.  I know what medicines they will deny, how to fight when I can, and even have Prior Authorization forms for medication and procedures saved on my computer. 

I know who the best nurses are, who has the most efficient office staff, and I can understand what they are saying, even in medical terms.  I ask questions, take notes, and research everything.

I have the entire 3 year RN/Nurse practitioner course book set, that I read in my spare time.  I study my own MRI’s, compare them to healthy MRI’s, and have memorized symptoms for dozens and dozens of conditions. 

When I do something, I go all in. 

As I feel my body getting worse, it’s actually nice to know what is physically happening when I have chest pains.  I rule out a panic attack, and know that it’s just a chest wall muscle spasm.  Sometimes, I even know the names of the muscle groups that are trying to crush me. 

The things I feel during my “normal” daily routine, would typically send someone without my disease to the Emergency Room.  To describe: Have you ever gone to the doctor’s office, or ER, in full panic that something horrible is happening to you?  You get irritated when the doctor tells you it’s JUST a disc herniation, or indigestion, or ovarian torsion…sounds AWFUL to you, but they don’t even flinch.  They see it every day.  Just think of me as the patient equivalent to that. 

I don’t flinch when I feel my rib cage tighten, my leg become stiff, or my abdomen spasms so badly that I have to run to the bathroom. I just deal.

I walk slowly to my ‘suitcase’ of medications, and depending on how bad the situation is, I choose which medication is necessary at that given moment.  Am I having a bad spasm, or a really bad spasm?  I chose between the 3 medications I have for spasms, and wait.  It’s just like being in the hospital…in the comfort of my home.  *I actually wait LESS time than I would at the hospital* But I don’t panic.  Truthfully, I CAN’T panic, or it makes the symptoms much worse.  I am not even supposed to get angry about this.  That’s the joy of Stiff Person’s Syndrome.  DO NOT get upset, angry, sad, or even happy.  Somehow, my emotions trigger a landslide of pain and muscle spasms.

That’s who I am now.  The most passionate person in the world, trying to practice being monotone.

I suck at it.  Seriously. 

Who am I?  Even though I have figured out a system to deal with this horrible curse, I still yearn to BE someone.  Do something, anything.  Isn’t that what we all set out to do?   Make some sort of mark in the world? 

Sure, there are things I want to do, go to nursing school, be a stay at home mom, even a patient advocate. 

I just want to be someone who accomplishes something. 

As I write this, my heart is flooded with a warm, beautiful feeling.  Love.

Although I still want to fight, and accomplish something on paper and leave behind a mark, I know in my heart that I already have.

It may sound silly, but as I define what I want to still do, I am realizing what I already have done.

I may never get my degree, or ever work again, or have a clean house again…but I already have so much more than that.

I have more than enough.  I don’t need a bucket list to make me happy before I die.  I am richer, and more accomplished than most, and am incredibly lucky to be able to say that. 

WHAT have I done?  Let me tell you.

I have overcome my own fear of letting people in, and have learned to love and trust, unconditionally.

I will leave this world with two amazing daughters, who will see me fight, and will be educated in the good, bad, and ugly parts of life, but will appreciate them all.

I have loved, truly loved a person with all of my heart and soul, and received the same in return.  After a lifetime of people telling me that there is no “Fairy Tale” life, there is no “Prince Charming”, and no such thing as a “Happy Ending”…I have proven them all wrong.  My illness may be a curse, but just like in any fairy tale, true love conquers all.

I have built relationships based on truth and honesty, even if no one wanted to hear it.  People will know that I never left anything unsaid.

People will know that, no matter what, I never held back or lied to make either of us feel better.  I always made a point to tell the truth, even if it was hard.  (Still doing things the hard way)

I have realized that I have everything.  I am the richest woman on earth, without a dime to my name.

All it took was a debilitating disease, and the knowledge that I am going to be in pain for the rest of my life. 

So, if you are reading this, do me a favor.  If you are sick, or in pain, or can relate to anything you have read, or have a friend that is going through any of this…

Stop trying to fill gaps with things that don’t matter.  Make damn sure you are truly happy before you start down that bucket list of yours.

Find LOVE.  In a friend, a child, or even a parent, but be true to yourself while doing it. 

Don’t hold back. 

Go get that degree, start that business, or write that book…just make sure you have the support you need emotionally before you do it.

If you have a friend going through a hard time with illness, go grab them lunch, cook them dinner, or make them something sentimental.  It makes a huge difference in someone like mine’s day.  One tiny gesture can give us hope, and make us smile for the first time in weeks. 

If you are NOT sick, do yourself a favor, and live your life like you have 24 hours left to live.  You hear it all the time, but you always wait until tomorrow to do it…because you think you HAVE a tomorrow.

My question?  What if you don’t?