Sunday, July 18, 2010

Perplexed...and yet, Still Bitchy

I'm too smart for my own good. I don't mean as in I've cured RA for good brilliance (don't we wish). I'm not even smart in a way like my hubby whom despite also having 3 degrees, can get under the house with the best of them and figure out why our washing machine isn't working.

No, I'm smart in a really annoying way. I also hold two degrees; I'm no slouch, but I have this irksome observational intelligence. I notice details about people, places, situations, rooms, outfits, body language. You name it, I notice it...And then somehow, I file it in a part of my brain for future reference in some (apparently) neverending storehouse of details fileboxes.

So of course; what ends up happening are one of two things: Either I see things coming for miles bofore anyone else...which annoys me and them. Me, because it takes forever to get validation, and them b/c I'm always right. Or, the second kind...and this is the one that keeps me awake at night, requires an ambien script, and still wakes me up 2 hours later anyway. I notice things, things that are too "non-random" to be coincidental, but I DON'T know what they mean. Obviously, I'm not meant to. I mean, I've lived long enough to realize God reveals everything in time. Yet, why does he let me see these connections if he's going to make me wait so long to find out what they mean.

And here's a big example of what I mean. I've mentioned it to a couple of bloggers, and their answer was that maybe we copy each other...but I really don't think it is that. I mean, RA behaves differently, for each one of us. And yet...there are certain periods where I swear my RA is acting like a lot of yours. And it seems to be the same 10 core people. For instance, I just went through the best three weeks I've had in two years, and now I'm crashing hard. I could tell without it having to be confirmed that many of you were having more good days...because we were all too quiet.

And I remember a time when (even though I don't struggle with my hands so much as most; mine is more in the larger joints) I was having a really hard month with my hands. Three bloggers posted that same month, one even featured new gloves. RA Guy is one and Remicade Dream, and the three of us are roughly the same age. There are more, but I guess I just wanted to raise this awareness for those of you that haven't already seen it too.

But I swear to you, I stay up night TRYING to figure out, "Why now? What's different? What did we do/didn't do that we did last month?"

So this is what I KNOW. This RA thing has a pattern. It may be slightly different in all of us, but there ARE remit/pain cycles that are consistent across the board. If I can see it from my little house in the sticks, where are the scientists, the Einsteins, the brainiacs? They could use an Oprah a-ha moment if you ask me.

I do know some docs see it. I believe that is why many are starting to read our blogs. It may have started as a conversation with one dr., and then another. And then more patients reported something. Each time we think we're on to something, its only a piece. But as random as RA seems, there are times its not. So there is a bigger picture we're all overlooking.

And as God as my witness, if someone could figure it out, I'd empty this entire damn detail file in my brain, including the HORRID picture of my newest sister-in-law wearing a TIARA at her wedding. Really, Sweetie? A tiara? In your 30's? Damn details.

Tuesday, July 6, 2010

Bless me Father, for...Wait...Nope, Didn't Sin

I take drugs. There I've said it.

Ok, so we're all laughing, because we all take drugs, right? The point of half of our conversations is to find out who is responding to what when and how, right?

Well I take RA drugs, and even though those have the scariest side effects, no one really cares to ask me about them.

Hmmmm...Why is that?

I guess they are just not "scandalous" enough for folks.

They want to know about the OTHER kind, the kind that I get from a very intelligent and highly qualified medical professional whom would not risk her liscense on a stranger by giving her a handful of drugs to swallow at will. NO!

She does, however, prescribe me a couple of things for the pain I live with daily while we wait for something to take hold. I know it will. It has before, and I've left the pain meds in the medicine cabinet where they stayed, until like a dumbass, I stopped Orencia to try and conceive. (Note to anyone trying to conceive: we were dumb, but you may not be as unlucky as I with biologics, so you go for it.)

In any case, I can bet MY LIFE that I am NOT addicted to pain medicine. Here is an actual conversation I've had in my house this week:

Hubby: Sit down; you are in pain and its time for a pain pill.

Me: You know they hardly work when I'm not on any biologics anyway.

Hubby: True. At least take some motrin then.

Me: Fine. They work almost the same anyway.

Now that all 43 of us know the intimate details of my conversations, could one of you PLEASE call my well-meaning, but definitely nosey and misled relatives and tell them I'm not quite the crackhead they might think I am, that just because I am forced to swallow opiates from time to time b/c I have a progressive debhilitating disease, I'm REALLY not ready to party down with Lindsay Lohan!

I am so sick of the endless questions about the pills. Seriously? It would even be o.k. if you threw in a question about my daily obstacles or small victories that I manage despite this nasty disease. Save your questions, b/c I'm not one to give you the scandal you desire...unless of course you want to peek into the room when my hubby comes home from a week long business trip. But that's another subject entirely!

In fact..."Forgive Me, Father...For I Have Sinned After All."

Saturday, July 3, 2010

Ride the Bus or Keep on Walking?

I'm flaring. Badly. I'm in between treatments. The Simponi wore off sometime this week. We gave up on mtx after five years of litle help, and 85% hair loss. So now I had a birthday. I'm 35, and I want to grow my hair back.(Sometimes I wear extensions, and though I get compliments, I always feel strange with them in, like I have some big secret that is about to get exposed.)

Ok, so my next step was supposed to be AP. My hubby agreed, even my Rheum. agreed, BUT (and there is always a but), two of my other docs expressed disgust that I would try it. Hence, when I came to see the rheumy I asked her what was up.

This was HER experience with AP. It can be good. It can be good, and I may feel great on it. (So this is where my hubby and I are getting excited.) But then she said, "I did AP with 1 girl with Sclerdoma. She was actually flying to Calirfornia to get it done, and I was just monotoring. She felt fantastic...for one year. And then it stopped. No one could get it tweaked enough for it to work again."

She went onto tell me that, "The AP girl was ready to sell her story to the world, but then it stopped. She said we can try AP with me, but she doesn't think we are there yet. She wants to keep trying until we've hit all the biologic drugs so that I'm not crippled by the time I'm 40 - 45."

Why feeling good and becoming cripple should go hand and hand, we can't figure out.

In any case, she STRONGLY suggested that we move to Arava and Rituxan.

Fine. Let's go. insurance company decided I need prior auth. for Arava. Why do they do that? They approve drugs that cost thousands in a blink, but every once in a while they will say nada to something dumb like a birth control pill.

And...the infusion nurse happens to be on vacay for this week. Which means, I don't even get to schedule the infusion until next week.

Meanwhile its been about 6 -7 weeks with no Simponi, and my body is SCREAMING at me. So yeah, you guessed it, I'm riding the steroid/pain med. train...which means I feel like 4% better.

Anyway, that's not very entertaining, but I wanted to catch everyone up on my new treatment option b/c we discussed it at lenghth on facebook.

However today, as I am flaring, I have been in bed quite a lot watching the House Marathon. They just showed my favorite one.

Its the one where House undergoes some memory brain surgery to figure out why Wilson's girlfriend is dying.

He ends up in a small coma at the same time Amber dies. So then they are both riding in this all white bus wearing all white gowns. Obviously, they have one way tickets to Heaven. Personally, I'd prefer to fly or maybe take a hot air balloon, but whatever...

So House asks Amber, "Are you dead?"

And she says, "Yes...but you're not yet. You need to get off the bus."

And he replies, "I can't"

She: Why not?

House: Because it doesn't hurt on the bus.

Right there. That's what does it to me.

That line says it all. Every time I hear it it rings with truth throughout my entire being. Because we all, whether we admit it or not, have that nagging thought in the back of our heads that there is only one way...ONE make the pain stop.

But then...everything stops. Our joys, our goals, our connections to our families.

But the fact that we even have that nagging feeling is enough for people to recognize JUST HOW horrific it is to live with chronic pain.

SO FIX IT PEOPLE. We're not just complaining. We are losing most of our lives. We may be here breathing, but that's just not enough.