Wednesday, December 29, 2010

The Chronic

No, not that chronic. Not Dr. Dre's chronic. Sorry if you're disappointed. Frankly, THAT chronic is far less....depressing? I guess? But, as they say at Casa de Sammo (and by they, I pretty much mean ME), you get what you get and you don't throw a fit.

So I'm tired of chronic things. Chronic problems that I can't fix, and some I can barely treat.

As many of you long suffering term readers know, I have asthma. I also now apparently have migraines. Oh, and a bladder that is "irritable" - just to throw negative adjectives around about an organ that I happily spent most of my life ignoring. You know, unless I'd had too much Coke Zero. (That I now drink only if I feel like peeing 765 times in a two-hour period, and moaning about my bladder.)(Carbonation, it seems, is NOT of the heavens, as I'd previously thought.) Oh and in case anyone was wondering, back in the sparkling shiny goodness of 1998 or so, I had my offensive (also irritable?) gallbladder removed so it would stop making stones and causing horrific blinding pain every so often. It worked, but left my stomach a hot mess, so basically any time I eat and/or experience stress, I

I've dealt with ALL THIS SHIT.

And now, my kids have The Chronic. Again, NOT Dr. Dre's friend.

Princess has AA (alopecia areata), that damnable autoimmune condition. For anyone keeping tabs, despite our best efforts, it is not getting better. (And since I am my own best whipping post since 1983, I decided it's due to stress that I'm helping cause.)(I know it's not, but not really, so I blame myself uselessly anyway.)(I should mention this to my therapist. Make a note.)

And now, my dark suspicions have come to light, Casanova most likely has asthma too. I knew he would. I couldn't positive-think my way past the growing evidence. When he was only 7 weeks old, he was hospitalized for a severe case of RSV that led to breathing distress. They don't know which comes first, RSV leading to asthma or kids who are going to have asthma anyway getting RSV and secondary infections. Either way, I was curled up on a folding chair, nursing a baby who was in a hospital bed and receiving breathing treatments every three hours from a respiratory therapist. When we took him home, he was on so many medications, I literally had a chart. He had liquid antibiotics and steroids, and then even more inhaled medicines. I had to sit him in his bouncy seat every four hours and hold the mask against a nose that was too small to even fit in the little fishy-shaped mask.

I'm sure it was part of my post-partum that traumatized me.

I'm also sure it was the guilt, ye gods, the GUILT. My bad lungs passed on. Although it was nothing I had actual control over, I knew it was still my fault. Even if it was only my stupid GENETIC fault.

And today, after spending a night restlessly tossing, turning and assuming I'd have to throw on clothes and hit the ER at any possible moment, the pediatrician basically confirmed that yes, he probably has asthma too. Right now, he's too young for the (jazz hands!) pulmonary work up, so we're calling it something fancy like "Hyper-Reactive Respiratory Syndrome" or whatever. And he's on liquid Sam's Boyfriend (also known as Prednisone) so the inflammation calms down and he can literally breathe easier. We all will. Especially me. Because I know, how I KNOW that tight feeling that has made him pull his shirt and tell me "Mommy this shirt hurts my chest!" Only it isn't his shirt, of course, it's his little lungs that are, like mine, "over-reactive." (Dare I call them, like my bladder and stomach, irritable?!)

I know that feeling that air, precious air just isn't getting in. I know that feeling that if you cough ONE MORE TIME you're going to just lose it. And then you cough again anyway.

And I can't fix it. And we return next week to see if he needs some preventive meds for the next six months. You know, until he's old enough to be all Officially Asthmatic.

And I'm just bone ass WEARY of things that only get treatment and never get cured. I am. I really am. I'm tired of feeling like a hippopotamus hyperventilating whenever I do try to run or do cardio. Because my lungs are just not CAPABLE of breathing air the way yours do. And every cold has the potential to send me into a two-month spiral of steroid pills and nebulizers and codeine.

Just like my precious liquid gold (see also: Sprite Zero) has now become my apparent kryptonite (and here I thought that was Katy Perry songs) because my bladder fills with molten lava and then I shake my fist at the bathroom ceiling in confused ire.

And I'm tired of appointments with dermatologists who tell me that I have a healthy child and not to focus too much on it. Yes. I get it. She doesn't have cancer, thank God. Or lupus. Or rheumatoid arthritis. Or anthrax poisoning either. How many times do I tell her, it isn't ME who is scared and upset most days? This kid KNOWS what you're saying, lady, and the second we leave, she grills me about what it all means. Bottom line it for me, Mom, and don't pull any punches. That's what she's saying in her 6 year old barrage of questions.

And I can't tell either one of my kids, hey, it's all okay, this will all be over and you can forget it all some day. Because they can't. Princess may end up in a wig. Yes, there are worse things. But this isn't YOUR kid, or the neighbor's or the kid down the road in the big blue house, it's MINE and that is not what we'd call ALL GOOD around here.

If you're a girl, maybe you understand, then again, maybe you don't. If you don't, cast back to junior high and remember the one kid who got picked on and how you felt all awful but didn't know what to say. That might be my kid. Because her hair, simply, is falling out.

And my son will need doctor's notes and breathing treatments and understanding teachers. True story: junior high PE, our crazy wackadoodle teacher decided we were all going to run despite the unseasonably cold weather. I ended up down at the nurse's office, gasping for breath. No one knew I was having an asthma attack. My parents had always been told it was something else. I had no inhaler. I remember sucking in air and coughing until I gagged. No one knew it was something that could have killed me.

So part of dealing with The Chronic is just that. Dealing. Coping. Waking up and choosing to go through the day and ignore or accept as many "irritable" organs as you can. And for my kids it means showing them that although these conditions make their life different, and harder than other kids, everyone has something. Maybe you can't see it. Maybe it's high cholesterol. Maybe it's diabetes. Maybe it is something visible, like alopecia, or a birthmark or some sort of special needs. No one has perfect health, or will forever. We all have some sort of medical cross to bear, and it's up to us to bear it with grace. It's up to us to bear it well, even though it's heavy and a bitch to carry.

Even on days when we cry or long to set that burden down for awhile. And that's okay too. Because no one said you have to be happy about that burden. You just have to cope.

Comments, questions, what's your burden to bear?