Monday, December 14, 2009

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!


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!

Tuesday, December 8, 2009

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 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.

Tuesday, December 1, 2009

An Open Letter to My Rheumatologist

Draft 1:
Dear Dr. Hack,

Let's start here - You suck!!!


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!!!


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!!!