It's come to this

Four years ago, I was diagnosed with psoriatic arthritis; a very hereditary, progressive autoimmune disease that causes joint pain and degradation, body swelling, and fatigue.  It strips my body of B vitamins, making me feel eternally stressed out and unable to sleep in spite of my fatigue.  While some people sit with these genes in their bodies forever, never having it go active, for some reason after my child was brought into this world, mine did. Why it goes active is still unknown to the scientific community.

Which means that the solutions out there aren't very good.  They're all to stop the symptoms, not to hit it at its root.  And despite those fabulous commercials with people running happily around green fields waving scarves in the air, the symptom stopper "solutions" all kind of suck.  There are steroids, which make your heart race and you gain weight.  And there are a cadre of immunosuppressants; a tiny bit better word than what it truly is: low dose chemotherapy.

For four years, I've tried about every holistic method possible to make this better: acupuncture, chiropractor, massage, prayer, ayurvedic healing.  The only thing I ever did that helped the symptoms was to exercise like a fanatic and eat almost nothing but vegetables.  But even then, while living with it was much more tolerable, (and I looked pretty good in a bikini) the disease was constantly progressing.  And while you may think it's a cop-out, my ability to live that fanatic of a lifestyle while working full-time with a family just isn't sustainable.

For years, my rheumatologist was patient.  But each visit would tell me in detail how sustained inflammation in my body was going to result in long-term heart disease or respiratory problems.  And he'd listen to me each visit about the new thing I'd researched in the hopes that that maybe, just maybe, it might be something worthwhile; and then politely explain why it wasn't an actual possibility for me.

But I held out. Maybe we'd finally be blessed with more children.  Maybe things would all work out and I'd magically wake up one day healed.  Maybe if I waited one more day that miracle drug or gene therapy would appear.

It hasn't.

And so, it's come to this.  Me, sobbing in my rheumatologist's office while he is handing me an entire box of Kleenex because I can't take one more day living with the pain and the fatigue and the depression that comes along for the ride.

And so, it's come to this.  I have cancer-causing chemotherapy poisoning my body with a side dish of heart-palpitating steroids, in an attempt to stop my over-active immune system from continuing to ravage my body.  I'm now cleaning things left and right and constantly begging my child to wash his hands a little better so that he doesn't get sick and make me really sick. I'm leery of coworkers who come to work sick. And when I do get sick, it just doesn't want to get better very quickly.

And so, it's come to this.  My child is an only child, and I'm very slowly coming to terms that he will always be an only child.  I'm sure as he gets older, the incessantly painful questions about why he doesn't have a sibling, or when we're going to have another will end; but in the meantime I will continue to have to come up with funny, yet evasive answers to not have to explain the real reasons why. (And please don't make me listen about your friend's uncle's adoption process and it's benefits. It just makes things worse.)

And so, it's come to this.  My lifespan will now not be what it was supposed to be.  I will always be on the lookout for bruises that don't heal quite like they're supposed to, or a right side that hurts, because maybe the cancer or liver disease has finally taken hold.

And so, it's come to this.  Me, downing this "medicine", hoping that this is the week I can make it through the whole movie without having to take a break to barf our pre-movie pizza dinner.  Me, making another evasive comment about why I'm not drinking that beer on a Friday night. Me, feeling like a complete wreck until the promised day that this makes me feel better finally appears.

And so it's come to this.  Where I can only listen to others complain and whine about their petty "difficulties" with nothing but anger and resentment.  (Really? That's what you're bitching about?  REALLY?)

It's come to this.  Where all this is supposedly better than the alternative of living the way I was for one more day.  I'm not at a place where this is comfortable.  If I could go back to the moment I swallowed the first pills and take it all back, I would.  I'm definitely not at a place where this feels like the right decision, and every minute of my day is ravaged with self-doubt (not to mention the nausea and headaches).  I don't know how to talk about it or tell people.  Or even if I should be telling people, for that matter.  Because what do you say after I say, "Hey, guess what!"  It's just that I felt like I'd exhausted the other options, and this was the only decision left to make.

And so it's come to this.  In the meantime, I'll be taking pictures, or figuring out my ancestry, or trying out that new ice cream recipe in the hopes that somehow it'll help me make sense of everything around me.