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."

Why Oh Why

Can't my family/work give me time off to recognize my first priority in life...writing this blog!

I promise to try and post tonight. I have had some really good ones lately too, and no time to put them down. So frustrating!

A Quick Question to Ponder While I Work on a Longer Post...

I "contracted" (I never know what word to say...devloped? caught? was given as a gift?) RA when I was very young. I was 29 years old. Actually, when I look back, the symptoms began 2 weeks after my 28th birthday, but it took until the middle of my 29th year to receive a diagnosis. Life was not as hard then as it would get...but somehow I thought it was then.

When I turned 30, I eloped and got pregnant within the first month of that year! After the birth of my son, the RA that went into remission with pregnancy returned with a vengeance. It progressed somehow with his birth, and progressed again last year, at year 5. (That second part is not related, but just a caution.) In any case, I often think God knew what he was doing when he sent my son that year. It was clearly going to be harder for me to care for a baby after that year.

Nevertheless, we tried anyway. Each time I would go off the meds. to get pregnant, I would literally be unable to walk within a short time, 2 months to be exact. Though the last time, it was probably only one month. At one point, we came off Orencia, the only drug that ever worked for me - after 11 months. It never worked again. And no drug has since in these two years. Talk about regret! Eventually, I decided that God had different plans for us, perhaps adoption, perhaps a busy career...it has not been revealed to me yet. ;)

But here is the problem, and wherein lies my quesstion (that was not so quick as I thought it would be): I often get asked if/when I will have another child. It is obvious to people who know us that I'm in my 30's. Certainly time is running out. I used to answer that I didn't know. Now I can honestly answer that "No. There will not be another one."

I can clearly tell that this answer bothers most people. So often, I would explain that I had RA, and that it was too difficult for me to stop my meds., so we really couldn't afford to try anymore.

Then, it becomes obvious that they are pitying me!

So here's the question: Do I allow people to judge me harshly, unfairly, or do I open myself up to their pity? Which is worse?

I'm hoping you guys can help.

Yay - I'm a 2-Time Award Winning Blogger

Isn't that great to say? :) I can't help it. I LOVE getting awards. I wish we could have our own form of the Oscars every year. That being said...I only want an award I TRULY deserve, so thank you for thinking I deserve this Wren, Remicade Dream and Bionic Pony.

Now, according to the rules of this award, I’m supposed to tell you ten things about me that you don’t know, and then nominate five blogs for the award. Hmmm...this will be an added challenge for me, because as most of you know, I'm trying to keep my identity a secret. So I cannot write about some of the more impressive parts of myself without tipping people off. Its not that I'm the Queen of England or anything, but if any of my family or friends stumble upon this blog, I don't want to face the inevitable hurt feelings and angry confrontations. Then again, the more I write about some of them, the more I think about revealing myself if only to ensure their departure from my life.

But ok, back to the award...

Thank you so much Remicade Dream for giving me this award. I love your blog, and I hope I will do the award justice. Wren, you know I adore your writing, and hope I can continue to learn more from you. And Bionic Pony, I just found yours, and can't wait to read some more. So here goes...

1. I wish I were the Queen of England, or the Queen of anything. I have an obsession with castles and find royalty intriguing...not to mention the fun I could have with those gowns and tiaras!

2. I have written to all three of my favorite authors with RA, and all three have responded back within 24 hours. I know - thrilling, right?

3. I am a HUGE fan of disaster movies. I have seen Twister about 200 times, and I've made my poor husband sit through every cheesy movie EVER made about a volcano eruption, earthquake or killer virus.

4. I own roughly 319 pairs of flip flops.

5. I absolutely LOVE my chosen career. One of the hardest things about this damn disease is that I don't get to practice my career full-time. But! As many have pointed out, it leaves me no excuse to not work on my writing!

6. I was voted Most Popular in our high school yearbook. It was a mistake. I was actually voted something else, but our names were similar, and they mixed us up. HA!

7. I predict the future at an alarmingly accurate rate. I present the following real life scenario:
Husband: Superbitch, I think Jack and Anna make such a sweet couple.
Superbitch: Yeah, they'll be divorced soon. I give 'em six months.
Husband: You're crazy.
(Six months later)
Husband: Jack and Anna are getting a divorce!
Superbitch: Uh huh, and you're surprised why?
Husband: Holysh*t, I married Sylvia Browne.

8. I have an enormous crush on Dr.Gregory House - but of course, he is the King of speaking his mind; he's disabled; he's brilliant. (O.k. so I lost in the comparison on the last point, but still!)

9. I abhor weddings. I think they are so boring, and such a waste of money. I eloped. And to this day, I try my best to get out going to as many weddings as I can. Imagine my delight when I had to be a matron of honor a few years ago.

10. Upon learning I had this disease at age 29, I gave up smoking, clubbing and drinking, and so now I drink 5 cans of pepsi a day.

And now I'd like to pass this award along to thse deserving people whom I do not believe have received it yet:

1. RA Sucks by Kim

2. And That's the Way Sue "C's" It...The Mommy Doctor Blog

3. Amber at RA Maybe Mamma

4. Leslie at Southern Gal with RA

5. Seth at Creaky Joints

Here I Come Again...

Its been a while, I know.

There are many, and I do mean many, reasons for my long unanticipated absence. There were some bad flares, and some great weeks when I had to take advantage of NOT having such bad flares. But then there was something else too...

It was...well, I caught myself being too nice all of a sudden. The RA blogging community is small, and we certainly must support each other; that much is clear. But showing support doesn't mean that we necessarily have to agree all the time. I was having a harder and harder time disagreeing with some of the bloggers that I have come to think of as friends.

And even more than that, I started becoming a little too aware of my readers. Like once when I wrote that post about how all the cancer awareness crap sometimes makes me resentful, and then I heard from a reader who had both RA and Cancer, and I ended up feeling like a big o'l bitch (and not the super kind). From there on out, I would start writing about something that bugs me, and I would pause and think "What if one of my readers does that same thing, and so this offends her?"

And so I had to step away for a while...try to live and be and do all things with this horrible disease. So that I could observe these experiences and bring them to you guys again UNcensored AND REAL! SO if you'll allow me to, I'd like to try again to start making entries regarding some of the more annoying things with which I dealt while I was away.

I would have liked to start even soon, but alas, let me share with you the LAST excuse for being absent so long...It comes under the heading of: Annoying fat in-laws who think that 1.)They know what is best for me. Even know they 2.)don't have RA, are not medical drs., nor have they barely even spent more than 2 minutes researchingthe disease. They also think 3) that they won't look EXACTLY like the abominable snowman in their size 38 wedding dress, but that's just one more example of their very poor judgement.

Yet, I've been subjected to their little "discssions" (read: lectures) several times each of the past few months. I'm seriously about to go over to facebook and make some really rude comment (you know how I'm famous for my snarky FB comments). Something that says something akin to: Thanks for all of your great advice about the disease that you don't have, but the wedding is right around the corner, so you may want to start working on your strategy for not being called the "second wife that is exactly double the size of the first one." I'm not quite sure how that's going to go over, so maybe I'll just keep writing here to keep myself sane.

So thanks for welcoming me back. I'll get straight to work on both updating you guys some more and doing something once and for all with our book disucssion.

And speaking of Facebook, please please pretty please use the link on the left to join us over there. We can make mini snarky comments to each other all day long over there, and you never know...You might inspire my next entry. Oh, and if while you are there, you want to make jokes about the fat bride that told my husband, "Would it really be so bad if she had to use a wheelchair?" I would seriously be ok with that. As in, I may nominate you for a Nobel Peace Prize.

On a serious note, thanks for caring everyone. And reading. I keep all of you in my prayers on a reg. basis. You have no idea. xoxo

- RA SB

Sometimes These Things Just Happen...

Well, since this is a place where I confess all my deepest secrets, I think it is only fitting that I mention that I am falling in love with my physical therapist.

She is in her sixties, and I'm pretty sure she is married...to a man, and I've never had any lesbian tendencies before now...

But all that aside...damn my knees feel good!

Do you think she will have me?

Book Discussion Update

Hey Guys,

I figured out how we're going to do the book discussion (Yay!!!), but I have had so many people express interest that if you guys don't mind, I'm going to move it to the end of the month in order to give everyone time to read the novel, including Wren whom I just sent the novel to today. :)

If anyone else needs the novel, comment here. Maybe someone else has a copy they are ok to part with. If you tell the post office you are sending a novel, they discount the normal postage rate. It is ony a few cents.

So once again, the book discussion is for Diane Chamberlain's novel linked on the left, and I will begin the discussion on March 30th.

I also added an new link of the week. (RA Mamma's link was added to the permanent blog roll.) The new link is a really cute blog that I enjoy. It is written by a female doctor whom is also a Mom with a lot of great parenting tips. I think a lot of you would enjoy that blog if you want to check it out. I love looking for new sites and blogs that you guys might like as much as I do. I know there are the usual blogs we all have come to know and love, but there are also a lot of fresh new ones I'm finding that provide unique perspectives. I hope you guys like 'em. And if you find a cool site, let me know!!!

-RA SB