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."

Thanksgiving

This year, I gave thanks that you, my readers, haven't given up on me despite my long absence. I went on to have one of the best thanksgivings of my life.

And then came Friday. More to come...

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.

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 ok...so 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."

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.

Except...my 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 WAY...to 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.

Mary,Jesus & Joseph! Mamma had an epiphany, and its about time!

I HATE being disabled. I cannot express enough how much I HATE having any limitations. I'll try to put it into words if I possibly can. Remember that scene from "Stand by Me" where all the boys realize they are all covered in leeches. You know how everytime you watch that episode, you think about how awful it would be if you were covered in leeches, and how you'd have this overwhelming feeling to jump up and slap at them for hours until they were all gone, screaming the whoooooooole time. Well, having RA is a bit like waking up every day and remembering that I have a ton of leeches on me. It is that horrifying. Really. I promise. I wouldn't lie. Not about RA.

And I also hate RA because it hinders me in SO many ways. Remember, before RA, I not only felt human, I felt that I was super-human. (How the mighty has fallen, huh?) If someone gave me a list of tasks that would require the energy of four people, I would not only have 'em done in a day, but I would have added five more and had my hair done, and my outfits changed twice to boot.

Now I have days when I imagine nothing will ever get done at my hands again... but then! I have days when I'm determmined that I will be AS efficient as the old me and will get everything done and look good doing it. (Of course, on these days I either fail miserably, or I hurt so much by the end of the day that I fall into bed as gracefully as Dorothy's Tin Man, screaming for celebrex all the way down.) In actuality, the truth is this: most days I have a list of about 10 things I want to do, and I get maybe 1/2 of those done, so I'm maybe just a little bit slower than the average bear, I guess.

I am coming to terms with the new rythm of my life. And though this may sound odd, I also recognize that I still do posess a certain physical beauty that RA has not stolen completely as I had previously believed. I suddenly feel too that this is another part of my life that should no longer be wasted as I mourn what else IS no longer because of this disease. Beauty fades rapidly, and I would lie if I said that hearing some recent compliments did not create a desire within me of late to luxuriate in this beauty, to accept the complimnets and the stares, and to appreciate the bit of the magician's illusion it lends me...

"Look here at how the blonde curls frame her big lovely eyes; pay no attention to the way she sometimes limps or that her hands appear for too rigid for someone's her age."

This blog is called "Confessions..." because that is what I do here. I confess. And I am confessing that yes I use my looks to open doors for me, espeically those doors that might otherwise be closed for someone with RA. I do my work as an activist at those doors AND behind them. Sometimes I have to get inside before I can truly begin changing pre-conceived ideas about people with autoimmune diseases. And I am ashamed to admit but sometimes the size of the key that unlocks that door is the approximate size and shape of two ass shakes and a head turn with a wink.

Yet, I write about this acceptance of my new limitations and the use of the weapons I have left, and in actuality, that is not what today's epiphany is about.

That epiphany would, in fact, involve my son.

You see, years ago, long before I was so evovled in my thinking about RA (ok you got me-- it was more like days ago), I felt very disabled and very frustrated, but the one clear thought that I always had from day one is this: I may be a thirty-something year old Mom with a physical disability and limitations and obstecales to every day living, BUT! My son is just a normal little boy, (emphasis on normal), and he does NOT have a disability, and hence, I will not allow him to live as if he does have one.

Now great intentions aside, and that was all I had... This decleration put me in a tricky spot b/c let's say I'm having a flare that is lasting a few weeks, but I also have a two year old who is relying on me for his every meal, every bathroom break, every minute of entertainment. In short, he needed me for every social, intellectual and fundamental need he had. (Let's not even mention here that I had no family support at that juncture -- or now, for that matter.)

So here's where things got/get tricky. With all of my greatest of intentions, I was, in fact, finding it hard enough just to prepare all my son's meals, so how was I then going to shuttle him around to enough activities so that he did not live "as if he were disabled?" I couldn't do it. So yes, in the very early days of his life, I am ashamed to say that his life became as small as mine often times did, which meant me all day long, my husband and me at nights, and if he was lucky, his cousins from time to time on the weekends.

It was making me crazy. After all my degrees relating to education and/or child psychology, I had all the love and knowledge to give my son, and yet to walk him outside and place him on the grass proved to be too difficult for me to manage on most days.

Oh, and around that same time it is worth noting, money was starting to become as big an obstacle to helping my child to live his life of busy activities as my health was.

What was I going to do???

So what I did do turned out to be one of the best decisions I have made in recent years. I took whatever money I could scrape together, and enrolled my then two year old son into one of those fancy preschools, that only meet for a few hours, a few days a week. Since the hours are only from like 9 -12, only stay-at-home-parents could find the time to take their children to these schools thus ensuring that the schools would be ever mindful of the heavy amount of parental involvement and therefore the curriculum would be full of both academic worhty subjects, but also plent of of oppurtunities for field trips and parties to provide both parent and child reasons to socialize.

I honestly liked the idea of my son having access to some structured learning time, but more than anything, I just wanted him to make other friends besides me, (read: some peers, some non-disabled children like himself.) In short, this was one of my son's first lessons in understanding that other people besides himself could, and in fact liked to, run/jump/bike, etc... He finally had people with whom he could play that didn't have to stop every hour to either take a medication or a nap.

So over the past few years, no matter what our financial situation, I have made sure that our son's school remains a top priority. Ok, so check one for Mama.

But as he ages, our son needs more than even that nine hours a week of feeling "not disabled" as I call it. So I have increasingly organized play dates, scheduled activiities for us, ensured that my hubby -- instead of helping me, his disabled wife or helping around with the house -- directed all his after work energy to taking our son to the park, or swimming, and then playing with him after dinner, bathing him and finally putting him to bed. (In total, I think my hubby and I talk about 20 minutes a day.)

I know to the the outside person it seems crazy. But imagine that at least five hours a day of a little boy's time is spent with a woman whom can only sit and play trains ten minutes at a time, or then stand to play ANYTHING for another 10 minutes, before its time to sit down again and rest. The lawyers refer to it as "popcorn disabled." We sit and stand and rest on a continuous basis all day b/c those activities I just listed remain comfortable for only a few minutes at a time. (How my child is not ADHD is a blessed miracle!)

So yes, GDamnit, I worry a lot that my son spends too much of his time modeling his life after the life of a disabled woman, even if that disabled woman happens to be his mother, and therefore the woman whom loves him more than she loves even herself.

Still, it has struck me recently that I have, perhaps, in my determination not to let my son live the sheltered life I've begun to live, pushed too much and too often. I say this beacuse recently, I did something that I hadn't allowed to happen in months and months. I left a weekend open, with no plans made for any of us, and I picked up a couple of movies for the family.

And you know what happened? The three of us spent the weeend kicking back, sometimes together having a blast in the pool or eating, or sometimes apart. Maybe I was quilting in one room while my son played trains in another room, and my hubby watched The History Channel in even a different room. And then Sunday, a miraculous thing occured. One of our son's friend's Mom's called and said, "How about sending your child over for a few hours, so you and your hubby can have a little time to yourself?"

And that is exactly what we did. And it was wonderful.

And I know it seems like just a normal weekend that many and most families might have all the time, but for me, it was a weekend full of revelations. First, I don't spend enough time focusing on my time alone with my husband. Secondly, I spend way too much time worrying that my son is modeling himself after a disabled woman, because for one thing, that is not true. And thirdly, even if it is true a ittle bit, its actually a somewhat good thing. Because hey - I have some good traits, some that deserve to serve as examples for others, disabled or no, right?

Finally, I just LOVED the normalcy of our weekend together. I wanted to see what it was going to be without my worry over his development clouding it. And I was happy to discover that it truly was one of the most wonderful weekends I've had in a very long time, with everyone feeling, for once, great in their own skin and o.k. that everyone else's bodies were at differet levels too.

No, this does not mean, however, I'm pulling him out of the pricey school. He still does need time away from Mom, but not because I'm disabled, just because he does.

And one more thing as an addendum to this story. Much is written these days about how to raise a child with speical needs. I get that, I do. But yet, not much is written in the reverse: for the mom with speical needs raising the child with very normal needs. And so that is why I think these posts are so important to we moms especially. We are the best sort of barometer for each other, I suppose.

Though, I will share recently that my rheumy was so impressed with my son's behavior at a recent visit, that she leaned over and asked my secret. Of course, it made me feel good. But how could I explain in the matter of minutes the bond that has arisen out of countless hours of the two of us finding the best points at which we could meet as mother and son, to play together, to laugh together, to learn and teach together, a rythym that involves pain and pills and laugther and questions and more laughter and love, lots of love, all the time love, and the desire to want to do the absolute best for my child, and perhpas even more so than an able-bodied person because I never want to feel for a second that any oppurtunity was missed for him because of me.

So I just looked at her and said, "We have a speical bond, Doc." At which point she could only answer,"I'm sure you do. There's do doubt about that."