Surviving, Thriving and LIVING

As a person with chronic illness, I find word phrasing to be an important part of my life.  Some people call me nit-picky, but I really do believe that our wording can have a negative or positive impact on our attitudes, and in turn, on our health.  When I hear someone say, "I suffer from _____," I ask them to try rephrasing their statement to "I live with _____" or "I have _____."  To me, the wording can make all the difference between allowing my illnesses to conquer me, or me conquering my illnesses.  Much like the old Tylenol commercial:  "I have arthritis, but arthritis doesn't have me!"  I have experienced a partial physical healing, but for me, my true healing came when I accepted what was happening inside my body.  I decided to start LIVING rather than, well, dying.  Celebrating life and what I've been given is a much better way to live.  I suppose, in a way, it's my own mission statement.  This is the example I want my children to see me setting for them.

I was reminded of my mission statement twice today in less than five minutes in the grocery store parking lot.  As I pushed my own weary body, kids and overflowing grocery cart uphill through the parking lot, I passed one license plate with the pink breast cancer ribbon that was personalized to announce that not only was the driver a survivor, but pregnant!  As I was marveling over the blessings in that family's life (and yes, smiling through my happy tears for someone I don't even know), another car passed with a wheel cover announcing that the driver is a Lupus survivor.  I did feel compelled to leave a congratulatory note on the first car (from one mommy and survivor of another kind to another), but I couldn't quite muster up the courage to knock on the window of the other car and thank that driver for sharing my viewpoint (the word stalker comes to mind...)!

So, here I am, surviving, thriving and LIVING...  In left field, of course!

What Do You Mean I'm Not Super Woman?

Yesterday was a long, exhausting day for me, shuttling myself and Avery to various appointments and errands.  I felt it when I attempted to get out of bed this morning.  Every single bone and joint in my body was locked up and refused to move when my brain told them to.  When you wake up crying, it’s not good!  As I contemplated my next move (roll to the left and cry, roll to the right and cry, whimper pathetically while my husband helped me out of bed or just give up and spend the day in bed), I reflected on yesterday’s frustrating appointment with my neurologist.

“Well, you’re not Super Woman.”  I laughed as my doctor’s words rang in my ears, even 24 hours later.  What could he possibly mean?  Huh, I’m a MOM.  Of course I’m Super Woman.  Duh.  I’m raising two boys, doesn’t that in itself qualify me as Super Woman?!  Silly doctor man doesn’t know what he’s talking about!

I might believe I’m Super Woman, and my family might believe I’m Super Woman, but my body is a different story.  And unfortunately (fortunately?), my doctors agree with what my body is telling me.   Things are getting worse and it’s just plain hard to admit.  I have new symptoms that no one can explain and the old symptoms are worsening.  I can't tolerate the daily meds that are on the market, so all we can do is treat the symptoms.  There aren't any answers, there aren't any solutions.  I'm just plain tired of always feeling this way, of not sleeping, of the constant pain and extreme exhaustion.  God and I have plans for this life!  I have things to do and places to be; I don't have time for this nonsense!  My brain says go, go, go; my body says please no, no, no.  How much more of my life will I have to give up?  I still want another child, I enjoy being able to 'take care' of other people by providing meals and volunteering.  My –ologists are still pushing me to go to a specialty hospital with bigger, better, newer, more knowledgeable specialists, facilities, testing abilities.  I just want my current –ologists to figure it out or try something new!  I don’t have time for new specialists who are in a different state.  My kids don’t have time for me to go to new ones who are in a different state.  I don’t have time to start over with new doctors, new tests, new medications.  As I said to my neurologist yesterday, and as I’ve been saying to him and my other –ologists for months, in a perfect world, sure, I’d love to go to this hospital.  But I don’t have extended family to help me out.  So, I asked my doctor:  Who is going to homeschool Noah, take him to his therapies and other appointments, take Avery to his playgroups and make sure everything else I do gets done?  Basically, who is going to be me in my absence?  That’s when my doctor laughed, shook his head and said, “Well, you have to take care of yourself too if you’re going to take care of your children.  You're going to end up in a hospital one way or another eventually.  You’re not Super Woman.”

So, until my doctors figure either how to replicate me, or how to replace me, this very tired Super Woman is just going to keep plugging away until someone figures 'it' out or I fizzle out!  Eat my dust, you rotten little useless autoimmune system!
(What do you mean I have to get out of bed again tomorrow?  But I just did it today!  Can't that wait until Thursday????)

Good night all!