17 05 2010

It’s almost officially summertime in the South.  Just as I was putting the groceries in the car it started to sprinkle.  The drops were heavy and hot, just like the air.  During the five minute trip home, the storm went from flash flood torrents to a steady, soaking rain.  Getting the groceries out of the car, both Ethan and I were soaked through.  I had hoped to wear my cute outfit until Shaun got home but nature thwarted me.

I dressed up a bit this morning for my cardiologist appointment.  I wore my BCBG jeans, a tissue style v-neck shirt, and my favorite Ann Taylor t-strap wedges.  I even put on makeup.  The first time I see a new doctor, I try not to look too much like a country bumpkin or a soccer mom.  I want their impression to be of a smart and able grown woman.

The second or third time I see a doctor, I don’t care as much if I show up in my normal suburban casual style – soft capris and a tank top.  I normally have a hat on too because I try not to pay attention to my hair on days I don’t have to.  Basically, I don’t mind if they see me in my normal state of disrepair once they know I’m not an idiot.

Today I dressed up to see a new cardiologist.  I don’t like him enough yet to say “my” cardiologist.  Shaun mentioned that just because of his profession, he started out in my view of him with a big black mark against him.  Really, if my – yes MY rheumatologist – hadn’t insisted, I wouldn’t have seen this one.

It’s not that I hate cardiologists in general, it’s just that the science hasn’t caught up to a point to where they can help me.  I do the tests.  I try their meds.  I change my lifestyle.  They tell me that “once I know what it is, I’ll feel better.”  I’ve known what it is for over 10 years and I still don’t feel better.

This guy was ok – he seemed a few years older than me and when he came into the room, he introduced himself to Ethan and shook his hand.  It was adorable!  The entire staff loved on the little man and that made it much more comfortable for me to not have to worry about him being in the way.  Some doctors really do mind having kids in the room.

The doctor seemed to brush off my concerns about the tachychardia and the “syncopal episodes” that have become more frequent.  My first EKG of the day showed that my pulse was 110 at its lowest and the rhythm was “within range.”  He told me that if I felt funny in the future, the best thing to do was lay down on the floor so I didn’t fall when I passed out.  Yes, thanks, that’s very helpful, Doctor.  I think you’d like to meet the administrator at my old school who said that if a kid hits you, to take off your glasses and curl up in a ball and scream for a teacher.  Suggestions like that are TOTALLY plausible.

In my medical history, I had mentioned very clearly that I have a bunch of dead relatives who died sitting up.  They were otherwise young and healthy but they couldn’t fall during the “syncopal event” and their hearts never kicked back in.  This happened to my dad when he was just a few years older than I am right now and the only reason he got a diagnosis and a pacemaker was because it happened in front of a nurse as he was being discharged from the hospital.

I think I have a right to be worried.  The doctor today told me that I was not my dad or my relatives and I shouldn’t be scared over nothing.  I don’t happen to think it’s nothing and I told him that.  My genetics are the perfect storm of potential heart issues – every person on my mom’s side has MVP with dysautonomia which is now being shown to be very similar to neurocardiogenic syncope.  He scheduled another echo which was done today, another EKG – I’m in the running for the most EKGs in a year – and a tilt table test on Friday.  I don’t think he would have scheduled the tilt table test if my rheumatologist, my primary care, and my mother had all demanded it.  I have no plan to scare the shit out of my kids the way my dad scared me.  If I have this, I’d rather they stopped my heart while attached to monitors with doctors in the room.  I don’t even know when I’ll get the results from today’s ultrasound.  I figure I’ll call on Wednesday if no one calls me.

On Saturday, I went to Walmart by myself.  It was the first time I’d been out of the house for a length of time in weeks.  I’ve had a lot of bad days lately but last week I made it through an entire week without needing Shaun to stay home and I felt brave enough to go out by myself.

While I was out, I saw LJs teacher and we chatted for a moment in the bathroom supply aisle.  About 30 minutes later, she walked up to me in the little girls’ section (yay, clearance racks!) and said “I am so envious of you.  You’re out shopping in peace and have time to look!  You just look so relaxed and refreshed!”  I made the normal thanks, and thank God for my husband who watched the kids pleasantries and we parted ways again.

It’s so weird to me that people envy me.  It seems so odd because I LIVE in my body and everything I have has been fought for.  Nothing has ever come easy.  It’s only this quirk of genetics that brought me this auto-immune disorder that makes my body regenerate incredibly quickly.  I see former classmates of mine and they look 10 and 15 years older than I do.  Lifes’ struggles show on their bodies and on their faces.  They have visible lines that tell of battles fought and of hardships overcome.

My skin doesn’t sag or show sun damage.  I can’t even keep my ears pierced because my body heals so quickly.  My body is still firm and all my lady bits are in the place God originally put them.  I weigh 10 lbs more than I did when I had my hysterectomy but it only amplified my boobs and butt.  My hair grows over an inch a month and my fingernails are almost always naturally long.

I have three gorgeous, healthy, and smart children.  LJ looks like me in his build.  Chickpea and Ethan are the spitting image of Shaun.  On the outside, we have the perfect little suburban life.

People envy that.  They don’t know that my body attacks every invader, whether it be a dissolvable stitch or a fetus.  They don’t know that I have almost every side effect to every medication.  They don’t know about being a foster parent or about adoption.  They think I’m overprotective or concerned about nothing when I parent my children differently.

I really don’t think other people are any more blessed or lucky than I am and my family is.  They’ve fought different battles and walked different roads.  It’s just weird to me that some people spend time being envious of others.  I don’t think it’s bad or anything, just different.

I would rather people look at me and think “it is possible to overcome what I’m going through.”

Psalm 129

“Many a time they have afflicted me from my youth,”
Let Israel now say—
“Many a time they have afflicted me from my youth;
Yet they have not prevailed against me.
The plowers plowed on my back;
They made their furrows long.”
The LORD is righteous;
He has cut in pieces the cords of the wicked.