With Friends Like These...

I'm warning you know. Look out. This is going to be a bad one.

If you are offended later, I don't want to hear it, because I'm warning you now that I could possibly anger someone, but then again, being that you are "My peeps," I somehow think you'll totally get this.

And truly, this can't be held in. I am LIVID, and I suspect that many of you are too.

I am livid because I have been hearing THIS for the past two years, and the last person who told me was either just the straw that broke the camel's back, or else when I considered the source, it just made me feel enraged for all the inappropriate things I DON'T say to him, which I am going to list here and now.

O.k. so let me back up...In fact, let me back WAY up...and I promise, when I finally DO write the thing I'm tired of hearing, I'll BOLD it for ya since I backed up on everyone. (If you think that is frustrating, you probably don't want to get behind me when I'm driving.)

Seven years ago, I began dating the world's sweetest man. He is a very intelligent, considerate and well-respected man, but he is also a rather shy and introverted man, a wallflower if you will, uncomfortable in social situations, bookish, careful with his words and just all around not the type of man you would expect to date...say... Dance Club Barbie.

And as luck would have it at that time, I was Dance Club Barbie.

Or at least I was the outgoing, fashion plate, social calendar overbooked, sports car driving blonde on whom he happened to develop a crush.

So when the two of us indeed began dating, many of our friends, co-workers and even family members sorta scratched their heads at the rather unlikely pair that we had become. Most people chalked it up to "Opposites Attract," or something like that.

And perhaps that was a bit of our case. Who Knows? All I do know is that attracted I was. I hadn't ever fallen so much in love, nor so deeply, nor had I ever experienced the kind of chemistry that was present between the man who would become my future husband and me. And yes, that kind of chemistry STILL exists all these years later; I can assure you. Seven year Itch? Not in this household. The only man I itch for is my tall and handsome husband.

But seven years ago, during our dating years, I imagine my husband probably developed a bit of a complex, when everyone appeared shocked that he had landed such a party girl. I can still, rather satisfyingly, see the look of shock on his family's faces when I walked in to meet them on his arm. His brothers jaws promptly hit the ground, and he swears they formed a new found respect for him on the spot.

So imagine our surprise several years later when all the, "Wow, man. You must be smooth to land her. How did you do it?" comments turned to, "Wow, lady. You are so lucky to have such a great husband with a good job whom is so devoted to you even though you are sick."

(Even though you are sick - those words BURN into me now, but we'll get to that.)

But let's stick with the past for a moment more, because I would like to point out that when the perception changed from my husband being lucky to land me to him being some sort of hero for putting up with my disease, we thought it was hilarious. The two of us spent a few years laughing about how people could switch their opinions so readily when really we had both felt all along that we were both just as lucky, just as in love with each other from day one until now.

Alas, every joke loses its luster. And after six years of hearing their not so veiled comments, I find that I'm not laughing so much anymore.

Perhaps it is because I have heard it for way too long, or perhaps (and this is what I suspect is the truth), the disease has progressed to the point where my husband actually does carry an increasingly bigger portion of the load.

But whatever the reason, I heard it again recently and I LOST it. I logged onto facebook, with hope upon hopes, that the person who spewed that awful comment my way would recognize their words and know my retaliation was meant for them. I wrote, "If you say to me that I am lucky to have such a devoted spouse because I am ill, I might say back to you that you are lucky to have such a devoted spouse even though you are hideously fat and ugly."

Now, I have said this before, and I will say it again. I have no beef with fatness. I have battled weight before myself. It is simply that the same person who made that insensitive comment to me happens to be marrying a person that is very large. My husband happens to think I am very lovely, beautiful, kind and intelligent (and we all know I'm sassy.) So perhaps my disability is not a "thing" for him. Perhaps, in fact, he feels lucky that disabled or not, a woman of my particular kind finds him so appealing.

And so while I know many of my friends were, in fact, offended by my FB statement, I think it was important for them to see the superbitch in me fly for once, to know that their little sly comments are NOT making it under the radar. I see the insult, intended or not, in their words, and I am not going to endure it anymore. Because you see, a person may have the most perfect, gold-plated, hard as steel joints there are out there, but I'm sorry to say that does NOT make them a catch. So yes, for every time you wonder aloud why my husband stays with his "sick wife," I may have to wonder aloud how you stay with your dumb one.

Or crazy one.

Or pastie white, crooked teeth having, pants hiked up on her waist one.

Or infertile one.

Yes, one person who made this statement to us has been struggling with her own fertility issues for YEARS. Do you KNOW how hard it was for me not to point out her own failings in the face of her obvious rudeness.

But I would never. Because let's face it, most of us never WOULD say these things to other humans. So then tell me again why THEY feel it is appropriate for them to wonder at my husband's motives aloud.

The bottom line is that some of us may indeed have RA, or MS or lupus or Cancer, and that does not mean our spouses are STUCK with us. It means they love us in spite of our challenges, or because of our integrity when faced with such challenges. It means that yes, they are honoring their vows, but they are doing it with joy and love and even passion and lust, not because they are candidates for Sainthood.

So I say, the next time someone has the gall to wonder aloud how anyone puts up with your having RA, ask them why anyone puts up with their ass period!

A Couple of Notes Before My Next Post

Just a couple of housekeeping items...

First, I posted a new link on the left. It is a new blog I found where a young woman with RA is seeking info. on being pregnant with RA. I was hoping some of you could stop by and share your pregnancy experiences with the blogger. She is a nice woman with an interesting blog.

The address is: http://ramamma.blogspot.com

Second, A lot of you have been interested in the idea of the book discussion. I was thinking we could aim for the middle of the month, the fifteenth. So if you haven't read Diane Chamberlain's novel on the left, and you are interested in the book discussion, go ahead and read it. (Especially those of you with your fancy Kindles. *grin*) Remember, the protagonist of the book has RA, and this is one of the only works of fiction I found where this is the case. So it is a really worthwhile read even if you don't wish to take part of the book discussion.

O.k. I will close out now and get back to work on my next post! Thanks Everyone!

A Lesson Learned

It is one of our fears, I think, all of ours about using the "d" word. We are afraid that we will use the "disabled" word, and someone will look us square in the face and laugh their heads off.

And it happened.

To me.

This week.

I started tanning. It is something I do about this time every year. I find that I can no longer wait for Spring to start, so around the end of Februrary, I attempt to jumpstart my Spring by lying under some lamps for 10 minutes every other day. I only go for a few weeks, and in that time, Spring starts, and I blend seamlessly from taking in my sun indoors to taking it in outdoors. Try it sometime. I bet you'll find the Vitamin D boosts your mood AND BONUS: I ALWAYS feel like my RA pain is lessened. No lie!!! There is something to the whole boosting of our Vitamin D levels!

But I digress.

Anyway, anyone knows that the only problem with indoor tanning is the dreaded "Prom Season." Which is now. Right now. All those high school girls lining up daily for days upon end trying to, in effect, change the DNA of their skin-tone from some sort of Euro-ancestry to that of the Latin descendant type. That is how dark these girls get!!!

Anyway, as a tanner, you know that in the prom season you MUST book your days a week in advance if you hope to steal 10 minutes from these prom queen hopefuls. And God forbid you arrive late one day to your appointment because your husband gets caught late in a meeting, and you almost break down in tears at the thought of NOT getting your 10 minutes of sunlight because you have come to depend on that little bit of sunshine in your day to break up the gray drudgery of these winter months hanging on way too long.

So you approach the nineteen year old, gum popping, orange streaked desk clerk and you BEG...you BEG for her to fit you in anywhere!!!

But she says the thing we all fear, "All we have is the stand-up."

Ugh. The dreaded stand up. No one can say why, but standing in a tiny bright room full of lamps feels way too much like actual work, while lying down surrounded by those same bright lamps feels like a mini-vacation. And why do those tanning salons even CARRY the stand up beds??? Everyone I know hates HATES the stand-ups, and they are NEVER booked.

So, like you, I said what you might when confronted with the fact that I would have to stand, STAND, for a full-ten minutes on very bad knees (did I mention that my knees are VERY bad right now), and I wouldn't have ANYthing to lean on in that hell-hole hall of light to take the weight off of those very swollen knees.

I said, rather quietly, "I cannot use the stand-up. I'm disabled."

And that is when it happened.

This 19 year old, going on 49 due to her year round exposure to sun lamps, literally cackles, CACKLES in my face!!! She laughs wickedly as if I just told the funniest joke she ever heard.

Evidently, the fact that she has witnessed me WALKING into the tanning salon on several occasions means that she cannot rationalize the word disabled as it applies to me.

I stood there, blinking. Stunned.

As I said, we have all feared this day, but not one of us ever mentioned how we would react if it actually happened.

So I did the only thing I could think to do in the face of such a nightmare, I took the cowardly way out. I silently took the keys to the stand-up room, knowing that I'm tiny enough to actually sit on that lamp-lit room's floor without touching the walls. I sat Indian Style, not really getting a great tan that day, but at least not torturing my knees.

I sat inside the bright room contemplating what it meant to be me, having joints damaged to the point that drs. are telling me I will not return to work, and yet walking into a place looking to the whole world as if my abilities are no different than their own.

As I sat, I formed an idea. I knew it was going to take courage to pull it off, but I also knew that if I could do it, I could make a statement that would be far mor effective than my wimpy, "I'm disabled" explanation, which I see now lacked the power of my own conviction.

I returned the next day to the salon and did something I have NEVER done before in m life. EVER. I wore, in public, my very UGLY, EMBARASSING TO ME, NO WAY TO GET AROUND 'EM KNEE-BRACES, the ones the dr. ordered with the bars on either side, that on football players look tough, but on my small frame, dwarf me and make me feel about as sexy as a young Forrest Gump. Even my husband has not seen me wearing these things.

I wore them to the salon, and before the girl even registered my face, she was holding doors for me and asking if I needed help. And she looked so lost as to what to do with me and my braces, that I took pity on her and said simply, "I need a bed, but I cannot use the stand-up because my knees are bad."

She said, "Of course."

And it was then I realized that I never needed the knee braces, I only needed to find my voice, my ability to explain in the face of the ugly laughter.

Honestly. None of us are EVER going to be able to control how others act, so all we can do is control how we react.

I know this now.

And I have a killer tan.

Watch out, world!

I'm not above a little prostitution!

If I read ONE MORE BLOG from one of my RA blogger friends depicting the GLORY of Kindle ownership without having one of my very own, I may just have to have a super-bitch fit! Seriously, who do I have to sleep with around here to get one of these magical items?

Oh wait.

Oh, Honeeeeeeeeey. Let's talk about what I'd like to do with you this Valentine's Day...;)

To All the Hot RA Chics Out There!

One common theme I've noticed when I explore the RA blogs is this: the "old me" vs. "new me" syndrome. Or the "before-RA person" vs. "After RA person."

Well, let me add a post toward the continuation of that theme. ;)

Before RA, I, your RA superbitch, was a knockout. I know it is common these days for any skinny girl with stringy straight flat hair to claim she is "hot," but I promise you, Pamela Anderson had nothing on me. Thick lustrous blonde hair, tiny waist, curves in all the right places and a smile to die for. Yep, that was me. I stopped traffic and I knew it. I once went a six-month period where I paid for nothing, I mean not a taco at taco bell, not for a movie ticket even if I were out with my girlfriends, not entry into any club. Everywhere I went, some poor guy at the door would say, "No charge for you, Sweetie."

Now before you decide that you hate me. Let me explain two things.

First, I didn't plan to be a stunner. I had grown up with babyfat, and my face always held that round Irish look. But after college, I transformed, the babyfat melted away, the highlights came from the salon and I learned to buy clothes that accentuated my waist. And before I knew it, Bam! I am causing traffic accidents.

Second, there was a downside to all this beauty. See, because I had grown up as only the "cute girl," I had a very friendly, outgoing, upbeat personality. I never formed the "I'm too hot to care about your opinion" attitude that most of my friends had cultivated. If women hated me, I cared...a lot. As in, I would obsess about how I could make those women like me. I went home and baked cookies, bought them bath products, offered to lend them clothes, pretty much do anything to win 'em over. It never worked. I finally figured out sometime in my late twenties that a woman determined to hate you because she envies you will hate you regardless of how much you kiss her ass.

And no women were meaner to me than those women working in minimum wage jobs: grocery clerks, fast food workers, the list goes on. It was something I had been so accustomed to, I barely noticed anymore when I pulled up to a drive-thru window only to be given a sneer and an eye-roll along with my change and my ketchup.

And then RA happened.

First came steroid weight, then the baby weight. And by the time I lost both of these, I had grown accustomed to sweats and ponytails. Oh, and did I mention the hair loss? Yep. Bye, bye to the long lustrous hair. Here came a short pixie cut.

Slowly, over time, I transformed physically from the person I had come to know in the mirror. Yet, this physical transformation honestly barely appeared on my radar. I was too busy trying to survive the pain and frustration of the rheumatoid arthritis.

This brings me up to today. Ok, so a few years have gone by. The drs. have learned that leucovorin given with methotrexate can slow hair loss, and I have achieved a shoulder length thick haircut again. My baby is now a child, which means I no longer have to leave the house in milk stained sweats. I slowly started pulling out jeans and fitted shirts again. All those days spent in the pool and gym to try to keep my joint function have paid off. The muscles and curves are back.

Last week, my husband and I pulled into Burger King. I was in the driver's seat for once. (The hubby makes a bad passenger, so its rarely worth the trouble of asking for the steering wheel.) Since he usually does the ordering when we are together, he was shocked to see the reaction of the girl who took my bills. As was the pattern of the past, she silently took my money, rolled her eyes at me and sighed without my having to say anything remotely rude or insulting.

My husband immediately got angry. With digust clearly written all over his face, he said, "That was rude!"

And suddenly it dawned on me, "It was rude, wasn't it?"

And then I smiled. Yes, smiled!

Why?

Because now I know I'm hot enough to be a bitch again...and not just an RA bitch.

Thanks tacky drive-thru witch for giving me back a piece of the old me!

Caution - A slightly softer post. (I'm allowed one every now and then.) ;)

It has been a busy time for the Superbitch. I have been simultaneously coming to grips with the fact that my life has been altered likely forever, spent time in the hospital because of my RA, spent time in the hospital because of an unrelated issue, and have tried in general to live the life of a busy Mom who is getting ready for Christmas and putting on a happy face for her kid, her friends and her relatives.

Up until last week, I have pretty much felt like I have come up lacking this year in terms of accomplishing most of my goals, both long term and short. We are still financially unstable. I am still struggling to find adequate treatment for my disease. I am behind on my Christmas baking, and my hair is in desperate need of some professional attention.

And then... a Christmas miracle...Well, 2 of them.

The first is that I started a new drug, a new NEW drug. That is right, one of the newbies. And while I am not going to be running any marathons anytime soon, I will say that coming from where I stared only 2 weeks ago -- which was pretty much hospitalized with horrible swelling and pain-- I have not only gotten back to where I was before this horrible autumn, but each day I am seeing some small improvement. So perhaps there is some hope on the horizon. I watch with cautious optimism. As we all know, I've been fooled before...as in 6 years of being fooled. I know, I know - I'm slow!

The second thing that happened is my very sweet neighbor came by with some treats. Now my neighbor is not ill. She is my age, a college professor, childless. Her home is always spotless. Oh yes, and did I mention she is getting another degree in her spare time?

Upon walking into my home, her hands flew to her hair and I saw something lovely come upon her countenance: panic! Yes! She suddenly exclaimed that she had no idea how I had managed to put up my tree, decorate it, shop for dozens of presents, wrap them, put them under the tree, address Christmas cards, and do all this while recovering from a hospital stay. She admitted she was hopelessy behind the ball.

Score 1 for Superbitch!!!

And then it hit me. I had been doing what I have been doing my entire life...shooting for a 10, missing...but... landing at an 8...which is several steps higher than anyone else expected, except, of course, myself!

And I remember the exact moment I started this trend. I was a teen. I was staying with my favorite crazy Aunt that we all know and love. I came "home" to the bedroom I was occupying to find a framed quote leaning upon my pillow. It said, "Shoot for the Moon - Even if you miss, you'll land among the stars."

Later we talked about it, and we agreed it was great advice. But I remember now that I had been secretly thinking, "Who wants to miss? I'll land on the moon for sure."

Well, guess what...I did miss. And guess what...she was right...because I aimed so so high, I continue to achieve more than anyone expects.

So this is what I figure. I'm going to keep the moon in my sight...BUT! I'm learning to appreciate the view from where I land.

An Open Letter to My Rheumatologist

Draft 1:
Dear Dr. Hack,

Let's start here - You suck!!!

-RA SB

Draft 2:
Dear "Dr. Mommy,"

My PCP has given you that nickname because you INSIST on leaving at 1:30 each day to see your kids! As he says, running a rheumatology practice is NOT ON PAR with running a boutique. You CANNOT be a part-time dr. Either increase your hours or STOP TAKING new patients. I'm tired of suffering due to your negligence!!!

-RA SB

Final Draft:
Dear Dr. With Whom I have Entrusted My Care for the PAST FOUR YEARS:

I am not sure where things went off course. Perhaps it was the day that I turned to you out of frustration at keeping my household going with a small child and 1 income and you suggested I hire a nanny. Perhaps it was sometime last year when you sent me to your cousin, the boy genius neurologist whom ran no tests, told me I was high strung and then put me on a medicine that caused a drug interaction even though I tried to warn you both that it could happen. Or maybe it was your even more recent infraction of telling an ER doc that you would see me for a follow up on Monday for an acute flare, only to then call my husband and insist I see my PCP instead as you will be headed out of the country until the new year and could not possibly squeeze me in at all.

I do realize that my RA is "overly symptomatic" as you call it, or "high maintenance" as I prefer to call it, but that does NOT mean I like it any better than you do! In fact, if THE CLOSER lined us both up and questioned us for hours regarding which of us HATED my demanding symptoms WORSE, I am almost positive it would be me, and then me again and again!

I HATE being in constant pain. I despise being tired all the time, but what I really really hate is facing a row of bleachers at a town football game and realizing that I could quite as likely fall flat on my face in front of the entire town as I would be to reach one of those and sit down in time.

I am young. I am beautiful. I am intelligent. I am a mother and a wife. I want a life. I want what you have.

What I DO NOT want is to be made to feel as if I am not important enough for your time. I do not want to feel like my husband and I are asking for too much for you to recognize when one treatment is doing NO GOOD and agree to try something else. We do NOT want to hear for FOUR YEARS that things will get better while you stall your referral to someone more qualified or consider blankly telling me to gather temporary disability while we figure it out. Because while you have gotten dressed every day in your lab coat to play doctor for five hours a day, I have lost my savings, my home and my pension. I have watched family walk away distraught at how to keep helping a young struggling family. I have had to face realities about illness and loved ones and have had friendships tested at levels I should NOT have had to have seen so soon nor so often. I am exhausted. And I am angry. I am so so angry.

I want you to GROW UP and recognize that if you want to have a practice that solely delivers steroid injections to the knees of osteo-sufferers so you can run home and see your children by lunch every day then you NEED TO PRINT THAT UNDER THE NAME ON THE DOOR!

Good-bye and good luck. I am doing what I should've done long ago. I have taken my 382 page file and I'm moving upward and onward. Please, please...see through the anger and frustration and know that if you are not willing to help your patients, you are only hurting us.

And before you ask, YES this is going to affect your standing on ratemydoctor.com!!!

-RA SB