A Dose of Reality

Ok, so for once I think I'm going to try something a bit different with this post. Instead of my biting commentary on the way society and the medical world views we RAers, I'm going to try a bit of realism. I want to share a conversation my husband and I had somewhat recently, maybe a month or so ago...and I want your commentary. I want to know if our conversation rings familiar to any of you...

I guess it comes down to one thing. We all just want to see how other people are handling IT, the RA because for one thing, it gives us a barometer for how hopeful vs. how pathetic we sometimes feel. But also we want to see how others are handling IT in case we can learn from them.

Please do not attempt to learn from the following conversation anything except that I too have moments of weakness:

Hubby: Honey, you are doing so well. You manage to get up every day despite debhilitating pain and stiffness and still remain the most positive person I know.

Me through tears: You don't get it. The ONLY reason I do get up every day is for you and our son.

Hubby: But that's ok because you get up.

Me through worse tears: You don't get it. That's the point. I don't want to.

Hubby: No! The point is that you DO...because if I were you, I don't know if I would.

"It Takes All I Have Just to Give What Life Demands."

Hey Everyone, I wearily start...

I know. It has been a while, a long while. I wish I could give you one great reason for my long absence like maybe I was spotted at the mall by a movie producer whom thought I could be the body double for Angelina Jolie and then was subsequently signed to a film that was on location in Greece so I spent the last several months sipping daiguiris and having soulful conversations with Brad Pitt about the merits of adopting from underprivledged countries.

Ok, I said I wish...

But the honest truth is there is no ONE good reason...there are, however, one MILLION good ones (and some bad.) I'm reminded of another quote: "Others have excuses, I have my reasons why."

So here is reason number one. Life is kicking my ass. Truly. I wish I could take credit for the title of this post, but it is a line from one of my alltime favorite songs, a lesser known one, written and sung by the incomprable Dolly Parton. There are some lyrics from that song that I want, NEED, to share with you..because you, just like I,will recognize the truth and wisdom of her song.

"You know, I've been thinkin' just a whole lot lately about what's been and what awaits me. It takes all I've got just to give what life demands.
Lord, you'd go insane if you give into it.
Life's a mill, and brother I've been through it.
I'm just so grateful I'm creative with my hands."

Wow. That Dolly. I'd swear sometimes you could wrap up my whole life in the lines of just a few of her songs. But in any case, at least in my experience these past few years, it ABSOLUTELY does take ALL we've got. Just EVERYTHING. We work and sweat and pray and do and want and need and know and ask and give and take and struggle and toil and at the END of the day...We're two steps back from where we started.

All I can think is if it takes this much effort to avoid catastrophe, would it not be just a whole lot less work to let it all go to shit?

For a while, my husband and I could't help but feel that we were moving in the wrong direction. Things shouldn't be so hard for so long. It had to be a message. We have spent years searching our souls, the skys, the bible, even a therapist or two for an answer as to why life has been so damn difficult.

I'll never forget looking up at my 80 year old Christian therapist whom upon listening to our sad story asked, "Superbitch, are you familiar with the story of Job?"

I said, without missing a beat, "As a writer, I must say God should've shoved that chapter right into the toilet, Sir, because that's just about the shittiest story I've heard, and if God thinks I'm going to bear that much strength, let me sign my deal with the devil now."

The conservative white haired man with the bible in his hand fell off his chair laughing. He said, "Superbitch, I think you just might have a lot of fight in you left. God's not through with you, but you sure do make him smile."

I love old people! They appreciate calling a spade a spade.

But! Not all the reasons I've been absent have been bad ones. Reason 844 for my absence: I won my disability case! Yay. Now I am not only disabled in my 30s, but the government is paying me to be so. I consistently remind my husband that my job title is technically "disabled citizen," so the less I do, the better I actually am at my job. I'm sure he wants to fire back some days that I am in the running for employee of the month!

I won't lie. The money is making a great part of my life easier. Its nice to see some of the black circles under my husband's eyes start to fade, or to watch my son's joyful reaction at getting what he actually asked for for Christmas.

The money means we could hire a housekeeper again, but let me tell you, with the RA, I appreciate this woman like never before. I list her right underneath god and family, right before breathing and sex, such is her role in my life!

Still, it is not my wish to remain disabled. I went to school too damn long. I am too damn useful, at least mentally still to sit at home watching some crazy man reveal the results of 8 paternity tests for one woman.

I do retain, therefore, a job. We are allowed to work a bit on disability, one of the perks (ok, 1 of only 2, the other being good parking spaces). And as hard as it is some days to perform my job, I stubbornly refuse to give it up. Reason 604 for my absence is: I am teaching 2 college courses, one online and one in person. I love my seated class and abhor the online one, a bunch of computer illiterate adults thinking they should get an A for finding the power button on their PC. But I take the good with the bad because twice a week I get to leave my home, actually dressed like a professional, out of pajamas for a change and I am allowed to ponteficate on any subject I'd like...for instance, last week we discussed the merits of adopting kids from underdeveloped countries. Ok, so I'm short on discussion topics of late!

But even as the money situation eased, and I thought I'd get our first break, the fates were not through with my ass yet. Whereas my bank account has gone up, my weight has gone down, and down and down. Looking pretty scarey here. Last month even my husband whom has called me the hottest wife he knows for the past six years said, "Honey, you need to go make yourself a sandwhich." Hmmph! (He could miss one!)

So I start contacting all of the Drs. No response at first, and then at like the exact same weight, I suddenly heard back from EVERY Dr. Reason number 9898 for my absence: APPOINTMENTS! LOTS OF THEM!!! God we hate those, don't we?

Turns out there is some rather scarey stuff happening with the RA. Like I needed the white coats to tell me. Last week I felt too weak to hold that sandwhich. I will keep you guys abreast, but try not to worry. Try instead to get angry at the specialist whom upon meeting us and hearing our story said, "Your husband is a wonderful man. Any other one would have left you a long time ago. I'm not kidding."

Yeah, his EXACT words.

Reason number ONE MILLION for my absence: my husband is on trial for killing a dr.

I've decided the only thing to do now is listen to that Dolly song...I'll provide the link for those who'd like to hear...and take the advice from the last two lines:
"I'll keep leaning on my Jesus. I know he'll love and guide and lead us...
And I'll keep looking to the Father, he'll keep my head above the water...while these smokeymountain memories keep me strong."