tag:blogger.com,1999:blog-12359619382271182682024-02-07T18:09:36.398-08:00Confessions of an RA Superbitchsuperbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-1235961938227118268.post-66630780175081251102011-04-12T15:05:00.000-07:002011-04-12T15:13:23.094-07:00A Dose of RealityOk, 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...<br /><br />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.<br /><br />Please do not attempt to learn from the following conversation anything except that I too have moments of weakness:<br /><br />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.<br /><br />Me through tears: You don't get it. The ONLY reason I do get up every day is for you and our son.<br /><br />Hubby: But that's ok because you get up.<br /><br />Me through worse tears: You don't get it. That's the point. I don't want to.<br /><br />Hubby: No! The point is that you DO...because if I were you, I don't know if I would.superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com23tag:blogger.com,1999:blog-1235961938227118268.post-50041451054767898762011-01-22T15:01:00.000-08:002011-01-22T19:46:07.330-08:00"It Takes All I Have Just to Give What Life Demands."Hey Everyone, I wearily start...<br /><br />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.<br /><br />Ok, I said I wish...<br /><br />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."<br /><br />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.<br /><br />"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.<br />Lord, you'd go insane if you give into it.<br />Life's a mill, and brother I've been through it.<br />I'm just so grateful I'm creative with my hands."<br /><br />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.<br /><br />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?<br /><br />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. <br /><br />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?"<br /><br />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." <br /><br />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." <br /><br />I love old people! They appreciate calling a spade a spade.<br /><br />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!<br /><br />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.<br /><br />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!<br /><br />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.<br /><br />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!<br /><br />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!)<br /><br />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?<br /><br />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."<br /><br />Yeah, his EXACT words.<br /><br />Reason number ONE MILLION for my absence: my husband is on trial for killing a dr.<br /><br />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: <br />"I'll keep leaning on my Jesus. I know he'll love and guide and lead us...<br />And I'll keep looking to the Father, he'll keep my head above the water...while these smokeymountain memories keep me strong."superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com13tag:blogger.com,1999:blog-1235961938227118268.post-49823750709970753632010-11-29T08:31:00.000-08:002010-11-29T08:35:48.578-08:00ThanksgivingThis 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.<br /><br />And then came Friday. More to come...superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com6tag:blogger.com,1999:blog-1235961938227118268.post-82595319154402122172010-07-18T11:23:00.000-07:002010-07-18T15:01:04.782-07:00Perplexed...and yet, Still BitchyI'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. <br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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?"<br /><br />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. <br /><br />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.<br /><br />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.superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com21tag:blogger.com,1999:blog-1235961938227118268.post-40794699048927990232010-07-06T14:39:00.000-07:002010-07-06T15:01:30.633-07:00Bless me Father, for...Wait...Nope, Didn't SinI take drugs. There I've said it. <br /><br />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?<br /><br />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.<br /><br />Hmmmm...Why is that?<br /><br />I guess they are just not "scandalous" enough for folks.<br /><br />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! <br /><br />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.) <br /><br />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:<br /><br />Hubby: Sit down; you are in pain and its time for a pain pill.<br /><br />Me: You know they hardly work when I'm not on any biologics anyway.<br /><br />Hubby: True. At least take some motrin then.<br /><br />Me: Fine. They work almost the same anyway.<br /><br />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!<br /><br />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! <br /><br />In fact..."Forgive Me, Father...For I Have Sinned After All."superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com10tag:blogger.com,1999:blog-1235961938227118268.post-86415396669988970042010-07-03T11:58:00.001-07:002010-07-03T20:07:38.233-07:00Ride 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.)<br /><br />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.<br /><br />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."<br /><br />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."<br /><br />Why feeling good and becoming cripple should go hand and hand, we can't figure out. <br /><br />In any case, she STRONGLY suggested that we move to Arava and Rituxan. <br /><br />Fine. Let's go. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />However today, as I am flaring, I have been in bed quite a lot watching the House Marathon. They just showed my favorite one.<br /><br />Its the one where House undergoes some memory brain surgery to figure out why Wilson's girlfriend is dying.<br /><br />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...<br /><br />So House asks Amber, "Are you dead?"<br /><br />And she says, "Yes...but you're not yet. You need to get off the bus."<br /><br />And he replies, "I can't"<br /><br />She: Why not?<br /><br />House: Because it doesn't hurt on the bus.<br /><br />Right there. That's what does it to me.<br /><br />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. <br /><br />But then...everything stops. Our joys, our goals, our connections to our families. <br /><br />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.<br /><br />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.superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com12tag:blogger.com,1999:blog-1235961938227118268.post-24698340945842200822010-06-05T10:17:00.000-07:002010-06-08T12:24:39.223-07:00Mary,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.<br /><br />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.<br /><br />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.<br /><br />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...<br /><br />"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."<br /><br />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.<br /><br />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.<br /><br />That epiphany would, in fact, involve my son.<br /><br />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.<br /><br />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.) <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />What was I going to do???<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.)<br /><br />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!)<br /><br />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.<br /><br />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. <br /><br />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?"<br /><br />And that is exactly what we did. And it was wonderful.<br /><br />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?<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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."superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com15tag:blogger.com,1999:blog-1235961938227118268.post-55404052788015676372010-06-04T11:09:00.000-07:002010-06-04T11:11:19.719-07:00Why Oh WhyCan't my family/work give me time off to recognize my first priority in life...writing this blog! <br /><br />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!superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com1tag:blogger.com,1999:blog-1235961938227118268.post-11167387449928962512010-05-20T11:04:00.001-07:002010-05-20T11:21:49.724-07:00A 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.<br /><br />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.<br /><br />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. ;)<br /><br />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."<br /><br />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.<br /><br />Then, it becomes obvious that they are pitying me!<br /><br />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? <br /><br />I'm hoping you guys can help.superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com28tag:blogger.com,1999:blog-1235961938227118268.post-86224062908127110332010-05-14T12:51:00.000-07:002010-05-15T02:44:17.545-07:00Yay - I'm a 2-Time Award Winning Blogger<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifjP99rIt8OAfpE5538WNoTekHEEEsyK7ilEX2RzmG8lHPevqNTooQ5-QIKG4kxcIJyFwRgBLgk5qecmFeKRzMYN7b53qQ-YgJDmPCpbtHMl2xn4xJwQPhYIW5BRXcAp0WMdp5aT0Dl68/s1600/sugardollaward.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 251px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifjP99rIt8OAfpE5538WNoTekHEEEsyK7ilEX2RzmG8lHPevqNTooQ5-QIKG4kxcIJyFwRgBLgk5qecmFeKRzMYN7b53qQ-YgJDmPCpbtHMl2xn4xJwQPhYIW5BRXcAp0WMdp5aT0Dl68/s320/sugardollaward.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5471230922707647746" /></a><br />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.<br /><br />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. <br /><br />But ok, back to the award...<br /><br />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...<br /><br />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!<br /><br />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?<br /><br />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.<br /><br />4. I own roughly 319 pairs of flip flops.<br /><br />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!<br /><br />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!<br /><br />7. I predict the future at an alarmingly accurate rate. I present the following real life scenario: <br />Husband: Superbitch, I think Jack and Anna make such a sweet couple.<br />Superbitch: Yeah, they'll be divorced soon. I give 'em six months. <br />Husband: You're crazy.<br />(Six months later)<br />Husband: Jack and Anna are getting a divorce!<br />Superbitch: Uh huh, and you're surprised why?<br />Husband: Holysh*t, I married Sylvia Browne.<br /><br />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!)<br /><br />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.<br /><br />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. <br /><br />And now I'd like to pass this award along to thse deserving people whom I do not believe have received it yet:<br /><br />1. RA Sucks by Kim<br /><br />2. And That's the Way Sue "C's" It...The Mommy Doctor Blog<br /><br />3. Amber at RA Maybe Mamma<br /><br />4. Leslie at Southern Gal with RA<br /><br />5. Seth at Creaky Jointssuperbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com6tag:blogger.com,1999:blog-1235961938227118268.post-70937141449939444082010-05-10T17:30:00.001-07:002010-05-10T18:15:10.416-07:00Here I Come Again...Its been a while, I know.<br /><br />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...<br /><br />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.<br /><br />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?"<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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<br /><br />- RA SBsuperbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com12tag:blogger.com,1999:blog-1235961938227118268.post-24232281040636751272010-03-16T07:50:00.000-07:002010-03-16T07:57:03.738-07:00Sometimes 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. <br /><br />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... <br /><br />But all that aside...damn my knees feel good! <br /><br />Do you think she will have me?superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com8tag:blogger.com,1999:blog-1235961938227118268.post-78600257658622293612010-03-15T12:04:00.000-07:002010-03-15T12:12:05.728-07:00Book Discussion UpdateHey Guys, <br /><br />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. :)<br /><br />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.<br /><br />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. <br /><br />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!!!<br /><br />-RA SBsuperbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com6tag:blogger.com,1999:blog-1235961938227118268.post-24032624177163021862010-03-13T18:08:00.000-08:002010-05-11T06:55:53.820-07:00With Friends Like These...I'm warning you know. Look out. This is going to be a bad one.<br /><br />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.<br /><br />And truly, this can't be held in. I am LIVID, and I suspect that many of you are too.<br /><br />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.<br /><br />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 <strong>BOLD</strong> 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.)<br /><br />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.<br /><br />And as luck would have it at that time, I was Dance Club Barbie.<br /><br />Or at least I was the outgoing, fashion plate, social calendar overbooked, sports car driving blonde on whom he happened to develop a crush.<br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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, "<strong>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</strong>."<br /><br />(<strong>Even though you are sick</strong> - those words BURN into me now, but we'll get to that.)<br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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."<br /><br />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.<br /><br />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 t<strong>hat</strong> 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. <br /><br />Or crazy one.<br /><br />Or pastie white, crooked teeth having, pants hiked up on her waist one.<br /><br />Or infertile one.<br /><br />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.<br /><br />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.<br /><br />The bottom line is that some of us <strong>may indeed </strong>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. <br /><br />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!superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com19tag:blogger.com,1999:blog-1235961938227118268.post-68332369829320899052010-03-06T14:10:00.001-08:002010-03-06T14:17:12.987-08:00A Couple of Notes Before My Next PostJust a couple of housekeeping items...<br /><br />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. <br /><br />The address is: http://ramamma.blogspot.com<br /><br />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.<br /><br />O.k. I will close out now and get back to work on my next post! Thanks Everyone!superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com9tag:blogger.com,1999:blog-1235961938227118268.post-82120067649493700572010-03-02T07:44:00.001-08:002010-03-06T17:09:04.867-08:00A Lesson LearnedIt 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. <br /><br />And it happened.<br /><br />To me.<br /><br />This week.<br /><br />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!<br /><br />But I digress.<br /><br />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!!!<br /><br />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. <br /><br />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!!!<br /><br />But she says the thing we all fear, "All we have is the stand-up."<br /><br />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.<br /><br />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.<br /><br />I said, rather quietly, "I cannot use the stand-up. I'm disabled."<br /><br />And that is when it happened.<br /><br />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. <br /><br />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.<br /><br />I stood there, blinking. Stunned. <br /><br />As I said, we have all feared this day, but not one of us ever mentioned how we would react if it actually happened.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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."<br /><br />She said, "Of course."<br /><br />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.<br /><br />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. <br /><br />I know this now. <br /><br />And I have a killer tan.<br /><br />Watch out, world!superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com9tag:blogger.com,1999:blog-1235961938227118268.post-5471944219368442762010-02-14T13:33:00.001-08:002010-02-14T13:37:45.285-08:00I'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?<br /><br />Oh wait.<br /><br />Oh, Honeeeeeeeeey. Let's talk about what I'd like to do with you this Valentine's Day...;)superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com11tag:blogger.com,1999:blog-1235961938227118268.post-56591954314801277412009-12-14T18:38:00.000-08:002009-12-14T21:07:12.144-08:00To 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."<br /><br />Well, let me add a post toward the continuation of that theme. ;)<br /><br />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."<br /><br />Now before you decide that you hate me. Let me explain two things.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />And then RA happened.<br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />My husband immediately got angry. With digust clearly written all over his face, he said, "That was rude!"<br /><br />And suddenly it dawned on me, "It was rude, wasn't it?" <br /><br />And then I smiled. Yes, smiled! <br /><br />Why?<br /><br />Because now I know I'm hot enough to be a bitch again...and not just an RA bitch.<br /><br />Thanks tacky drive-thru witch for giving me back a piece of the old me!superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com17tag:blogger.com,1999:blog-1235961938227118268.post-62780655095802338332009-12-08T18:35:00.000-08:002009-12-08T18:55:44.103-08:00Caution - 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. <br /><br />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.<br /><br />And then... a Christmas miracle...Well, 2 of them.<br /><br />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!<br /><br />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? <br /><br />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.<br /><br />Score 1 for Superbitch!!!<br /><br />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!<br /><br />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."<br /><br />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."<br /><br />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.<br /><br />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.superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com4tag:blogger.com,1999:blog-1235961938227118268.post-88607883150250553592009-12-01T07:33:00.000-08:002009-12-01T08:46:34.957-08:00An Open Letter to My Rheumatologist<strong><em>Draft 1</em>:</strong><br />Dear Dr. Hack,<br /><br />Let's start here - You suck!!!<br /><br />-RA SB<br /><br /><strong><em>Draft 2</em>:</strong><br />Dear "Dr. Mommy,"<br /><br />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!!!<br /><br />-RA SB<br /><br /><strong><em>Final Draft</em>:</strong><br />Dear Dr. With Whom I have Entrusted My Care for the PAST FOUR YEARS:<br /><br />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.<br /><br />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 <em>THE CLOSER</em> 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!<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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!<br /><br />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.<br /><br />And before you ask, YES this is going to affect your standing on ratemydoctor.com!!!<br /><br />-RA SBsuperbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com14tag:blogger.com,1999:blog-1235961938227118268.post-65899271137796143022009-11-28T13:21:00.000-08:002009-11-28T14:27:13.193-08:00I'll get implants if only I can keep my joints please!Today I saw one of those public service announcements on t.v. It featured an actress I like, the doc that plays Cameron on the tv. show <em>House</em>, so I sat up to take notice. However, I soon dismissed the ad once I saw the headline; it read "250,000 New Cases will pop up this year...Breast Cancer."<br /><br />I'm sorry. I don't mean to sound heartless, but aren't there already 1 million of us ALREADY diagnosed with RA in this country? Don't we live with it every day, each month and each year with NO prospect of a cure? Don't breast cancer patients stumble upon remissions daily, while only 1% with RA will EVER see remission, never mind stay there?<br /><br />I didn't used to think this way. I never considered that MY illness was in direct competition with anyone else's illness. That is...until someone close to me was diagnosed with stage four Breast Cancer and I realized I was jealous of HER. Yes, jealous. Soon, her future will be clear. She will either have a life or she won't. My own future becomes more fuzzy each day. Even my doctors cannot predict at this point which functions I will lose and when. I take it as a bad sign when the doctors start offering pain medicine rather than treatments, noticing that they will gladly offer whatever relief they can since they can no longer expect I can find effective treatment.<br /><br />Am I the only one who feels so miserable? Have any of you ever had the, "I wish I had THAT disease INSTEAD syndrome?"<br /><br />Or is it just me?superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com10tag:blogger.com,1999:blog-1235961938227118268.post-44282839432799385822009-11-19T17:05:00.000-08:002009-11-19T17:11:20.761-08:00While I was Away...So things have been quite on O’l Superbitch’s blog this week… Sigh…there are many reasons for that. It some ways, I honestly don’t know if I am ready to write about those things yet, but my goal when I began this blog was to convey honesty regarding RA, and not to back off from the realities of the disease by adding any kind of disclaimer, as in “Oh, but in the end, I’m still blessed because I woke up today,” or something akin to that. <br /><br />I wanted to see a blog that said, “RA sucks. Period. And given the choice, NONE of us would choose to have this disease. But that does NOT mean we have bad attitudes. It is just the plain truth.”<br /><br />I knew there was room for this type of blog in the blogosphere. I believe each blog I’ve seen is as unique and special as the person creating it. Still, I hadn’t found any that were as raw and edgey as I was hoping to find, so I set out to create one. I was astounded at the wonderful response I got from my small group of followers. You are all so supportive.<br /><br />When I began this blog I thought I was so tough, the RA’er whom had been battling the disease for 6 years and knew everything about it in and out. Let this be a lesson. There is always more to learn about this disease, yourself, and how you will respond to the disease.<br /><br />Six years ago when I was diagnosed with RA, my first doctor acted as if I had been handed a life sentence. He offered no hope, discussed no treatments. When I got up the courage -- a full year later --to see my next doctor, her approach was vastly different. She offered EVERY hope. And when I say EVERY, I mean EVERY. For the past five years, she has made it seem entirely possible that as SOON as I stumbled upon the RIGHT meds, I would wake up feeling like my old self. She has reminded me throughout these years that 90% of her patients have had success on the biologics. She was so convincing that I returned to school and earned another degree thinking that before I graduated, I would have found my “cure.” <br /><br />Wrong.<br /><br />Two years later, I have earned that Master’s. Yet, I am no closer to finding treatment for my symptoms. I have, in fact, gotten worse. The disease has progressed. The past six months or so have seen the two of us, my doctor and me, arguing over whether or not I was ready to return to work. I insisted I could if we only found the right medicine. After all, those were her words, right? We even added a pain management piece. For a while, I thought that could be the answer. Her reaction surprised me. She was appalled that I would even consider working on narcotics. Looking back, I see how desperate I was to regain some independence. <br /><br />Last week, I walked into my most recent appointment and we had a “come to Jesus” meeting. I do not respond to the treatments. The best I have been in six years was maybe 40% reduction of my symptoms, and those days are gone because I had to switch that med. <br />The doctor pointed out my new reality. We would keep trying, but I may have to come to grips with the fact that I have already seen my best days with this disease.<br /><br />I was floored, stunned. My husband and I have experienced financial ruin in order to fight this disease with EVERYTHING we had. We gave up our savings, then our retirement accounts, then our house, and now, we live on a wing and a prayer, making decisions between paying the electricity bill or buying medicine. The joke in all this is that my husband works in a high profile job. Everyone expects that someone with his level of education and belongs to his profession would be financially stable. They do not understand that he pays over 2,000 month in order to treat his wife’s RA.<br /><br />We have lost friendships, ruined relationships, ruined our credit score and left ourselves open to public ridicule every time we were forced to write a bad check to buy groceries.<br /><br />And now, I have learned that any idea I had about returning to work is gone.<br /><br />A doctor actually told me this week that my rheumatologist set me up for failure by allowing me to return to school and believe I would be o.k. But in all honesty, I do not blame her. She was optimistic, as was I. I was all too eager to believe I could beat this disease. I was that arrogant.<br /><br />Recently, we blog readers were all introduced to a man, a forty year old firefighter, whom has questions about his recent diagnosis. It takes everything I have not to yell, “Work now. Save Now. Do WHATEVER you can in the next few years, because pretty soon you probably will NOT still be working.” Yet, I don’t know this any more than my doctor knew I would fall into that slim category of people that do not respond adequately to biologic drugs. <br /><br />So what is next for me? Disability? A long fight? It has to be something. We can not continue to live-- nevermind thrive-- under such conditions of poverty. My son deserves better. My husband, the man who gave up all of his possessions and much of his his dignity, deserves better. I deserve better.<br /><br />I have barely had a few days to even wrap my head around the idea that I cannot work. It is all so unreal. It feels like it is happening to someone else, and I am left to watch it all unfold. I am so lost, and so very confused. <br /><br />For 29 years, I had an identity. I was the “girl full of pep and vigor.” After the onset of RA six years ago, I mourned the old me, the girl whose biggest concern was matching her bag to her outfit. I missed being the girl who rode around in a sports car and accepted roses from multiple men. I miss the girl who LOVED her career and was GREAT at it. <br /><br />After my RA diagnosis, I struggled to find my new identity. But eventually I did find one. I became, “The girl who would find her cure.” So for the past five years, I believed with EVERY shred of my being that I would get better, be well, be “cured.” When my classmates expressed doubts at my ability to hold down a job, I steeled myself against their remarks. When my own parents acted as if I were working towards a pipe dream, I stubbornly pushed my body to limits that left me in screaming pain most every night.<br /><br />And now, here I am, once again searching for a new identity. Can I really forsee living with the job title, “Disabled Chic.” <br /><br />I feel like I should tell that firefighter, “Year 3 was worst than Year 1, and Year 6 is even worst than that.” <br /><br />But then I realize, “What does that tell YOU about year 10? 15? And so on?”<br /><br />Whatever the future holds, I know now that it will not include me re-entering my career. I will start the paperwork process. This is the scariest thing I have ever done in my life. I can no longer believe that I can get better using sheer will and the best drugs; I can no longer feel like I am in control of my own life. My husband pointed out that I was never really in control, and I know he is right. Still…it FELT like I had some. Now, I can only tell my pitiful story to a judge and hope he understands the sacrifices my family has already made. I hope he understand that we need some help now.<br /><br />I was not too eager to write this post, but I felt like it was important because some of you may be pondering the same issues. Many of you might be me 4 years ago, or 2 or even 1. You might believe that it will get better. And you might even be right. But I just want to say once and for all something that I should have been told a long long time ago. Very often, this disease does NOT get better. Very often, it gets worse.superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com10tag:blogger.com,1999:blog-1235961938227118268.post-35713859208897281252009-11-14T17:16:00.000-08:002009-11-14T17:17:46.850-08:00From Daughter to Disabled Chic in 6 Easy WordsI will never forget the most hurtful conversation I ever had with my father. In two minutes he managed to change the course of our entire relationship. <br /><br />Before my RA, my father and I were two peas in a pod. We, each of us, had an overabundance of energy. We ran in the mornings, worked all day, and then I taught swim classes part-time at night, he taught karate. In the evenings, I’d head out dancing with my friends. He went home, walked the dog and went to bed. HA – at least I beat him after 9pm. <br /><br />But everything changed when I started showing symptoms of RA. So now… instead of the two of us going running in the mornings, he goes by himself. I haven’t worked in a while, though I am trying to get back to it. There are so many things I’ve been forced to change about my lifestyle...the list goes on.<br /><br />So one day I tried opening up to my father about my frustrations concerning my new limitations. He began telling me something about having the will to make things happen. I told him, “Who are you talking to? I’m the girl who went to college with nothing. I found scholarships, landed internships. I made everything happen that I could. There is not anything in my life that I did not have to break my back to acquire.<br /><br />I went on to explain that “It is a different thing altogether when you are ROBBED of your physical abilities. You wouldn’t tell a cripple man he could will himself to walk if he just tried hard enough.”<br /><br />He did not answer, so I pressed, “So tell me, how am I supposed to overcome this disease?”<br /><br />I did not expect an answer by this part of the conversation; I was simply trying to make a point. And I certainly did not expect the answer he gave.<br /><br />He said, “That has to come from you.”<br /><br />I said, “Excuse me? Last time I looked, I did not possess a medical degree.”<br /><br />He tried to speak carefully, but he knew it was too late, so he just said plainly, “When you get tough enough to deal with the pain, then you’ll know how to handle things.”<br /><br />I was floored. I hung up and cried for days. Deal with the pain? Are you kidding me? I carried my 14 pound infant son around for 2 years while my shoulders and elbows and wrists SCREAMED at me. I lost 80 pounds of baby and steroid weight by going to the gym 4 times a week and then going home to soak in ice. I even went back to school and sat in 14 hour long classes to earn another degree by alternately popping steroids which made me a haggard mess and pain medicine which begged me to sleep. I earned a 4.0. I am one tough girl. Do NOT think this is a disease for wimps. No sir!<br /><br />Our relationship has gone swiftly downhill since that call. He did call last year to tell us his new wife has breast cancer. I do feel badly, but having received no compassion from him, there was not much I could say. Until he asked, “How is she going to beat this?”<br /><br />All I could think to say was, “Oh – that’s going to have to come from her.”<br /><br />He hung up.superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com16tag:blogger.com,1999:blog-1235961938227118268.post-91889624736094372832009-11-13T11:27:00.000-08:002009-11-13T11:30:25.185-08:00Black and BlueOur college homecoming queen married the quarterback. No surprise there. They got married when they were still fairly young, right upon graduation. My then boyfriend and I attended the wedding with most of our friends. It seemed like a great match. They found jobs at the same high school. She was to teach English, he to teach PE and coach football. We sent them off with birdseed and our best wishes for their future.<br /><br />Several years later, I found out that this couple divorced. The story I was told regarding their break-up was one of those that was so unbelievable, it was almost humorous. The rumor was that she left him because each time his football team lost a game, he would go home and beat her. Obviously, it is not funny if he truly did hit his wife. It is just simply ridiculous that someone would be so affected by a football game as to let a loss turn his Dr. Jekyll into his Mr. Hyde. <br /><br />Now it is several years since I heard this story, and it is I that feel like the battered wife. My abusive husband is known by the name of Mr. Rheumatoid Arthritis. We call him RA for short.<br /><br />He’s an ass, and he doesn’t just strike when his football team loses.<br /><br />In fact, give RA a beautiful sunny day, and he’ll make sure I’m stuck inside out of spite. He keeps me locked up from friends. On certain days, he hovers so closely that I cannot even type to my online friends. And he has even gone so far as to rob my voice so in order to make telephone conversation impossible. He prevents me from so many activities I used to enjoy. He has even put an end to my dream of having another child. He is selfish, and he is controlling. There is little doubt about that. <br /><br />He has changed the way people view me. Instead of being held in awe for my looks or for my brains, he has allowed that people pity me instead. Instead of being perceived as the mother with boundless energy, I am instead regarded as the woman being terrorized by an evil being that I am not strong enough to shake. I fear that I appear weak to others.<br /><br />RA ensures that no one else will want to find me sexy ever again. The toxic drugs that have accompanied his presence in my life have caused much of my hair to fall out. After RA had been with me a number of years, he managed to destroy my appetite until I am naught but skin and bones. And just in case these attempts fail to make me ugly enough, he tries desperately to disfigure me.<br /><br />But by far the worst part about living under the reign of my brutal companion is the tremendous amount of pain he inflicts. RA is extremely violent. He causes joints to swell like to twice their normal size. When he gets through with me, I’m in pain from jaw down to my ankles. I take more pain medicine then I ever imagined I would, and most days that doesn’t even come close to touching the amount of pain I’ve suffered at his cruel hands.<br /><br />So if I am to think about it, is it really any wonder we all struggle with depression and resentment. Those of us with RA are all suffering from battered woman syndrome. Yet, there is no hotline we can call. There is no one who will come in the middle of the night to take us away and protect us from this beast. We don’t even have a description to give the police of the gruesome thing that tortures us. That bastard we live with every day won’t even show his face! We are being held captive by a beast we cannot escape, and he finds new ways to torture us with each passing day.<br /><br />But that doesn’t mean we can’t band together and fight this thing. Each time RA rears his invisible hand, we will smack him back down with every tool in our arsenal. We will continue to form groups and share the treatments that have worked to bring him to his knees. For every powerful entity you show me, I’ll show you his kryptonite. Cancer has chemo, polio was banished with a vaccine and even the HIV virus possesses only a shadow of the power with which he once presided.<br /><br />I actually ran into the ex-homecoming queen a few months ago. She is remarried, still teaching, and has two beautiful kids. Her ex is nowhere near the old school, and I’m sure he crawled back under whatever rock from where he originated. I would love to say that all evidence of her past abuse is completely erased; however, I couldn’t help but note this woman had lost the sparkle that once existed in her eyes. She did not hold herself nearly as straight and proud as she once did. She did not speak with the confidence I remember used to radiate from her. She has been forever changed, and her battle scars are evident. <br /><br />I refuse to lose my sparkle. I refuse to let RA take away my confidence any longer. There are parts of my life RA cannot and will NEVER touch, this blog, for one thing. Each time I write, I am recovering a piece of what he has taken from me. Even my symptoms seem to be improved this past week. So let me make this announcement here and now – RA may have laid claim to my body, but he can never…ever…have my soul.superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com6tag:blogger.com,1999:blog-1235961938227118268.post-35153989545158403092009-11-11T02:26:00.000-08:002009-11-11T09:44:22.585-08:00Not Biased, Just Bitchy!My aunt is losing her mind. The funny part is…I now prefer her to the rest of the family. <br /><br />When others visibly cringe at her comments, I cheer inside. (And laugh on the outside!) After all, my cousin does resemble a two dollar hooker since she dyed her hair. And my mother really does look like she could’ve eaten her last husband this past year. And come on…anyone would see that baby did have a HUGE head so maybe her alien remark was not too far off base.<br /><br />All I’m saying is…her observations have grown more astute.<br /><br />And really, who cares if she refuses to wash her hair. She can put on a nice hat to go grocery shopping.<br /><br />And if she refuses to cook, I say “Everyone eat your lean cuisine and stop complaining. Don’t you know there are starving people in Michigan who sold their homes for the cost of your ramen noodles?”<br /><br />Aunt Vera does what she feels like doing; she says what she wants to say. Essentially, she is who she wants to be. And for this they say she has dementia? No doubt we could all use a little bit of dementia in our lives then.<br /><br />I spoke with her husband last night. He has been dealing with her “dementia” now for over a year. He was frazzled and fed up. He lamented his lost feelings for the woman he had been married to for over 30 years. He complained that he had to remind her to bathe and clean the house, and then he went on to say that she could no longer bring money into their home.<br /><br />My first instinct was to give him all the understanding befitting one who is dealing with his situation. I know he did not ask for this, and he has sole responsibility for her health and well-being, which at times may feel like a huge burden.<br /><br />But then…The Superbitch in me came out, and she was not happy with his selfish appraisal of the whole situation.<br /><br />After all, did my Aunt ask to be in this position any more than he did? Isn’t a breakdown of the mind similar to the breakdown we are experiencing with our bodies? If the situation were reversed, wouldn’t he wish to be taken care of by the person he trusts most in the world? And wait…didn’t she marry him when she was a stunning beauty and he had very large ears and not a dime to his name?<br /><br />And then came my realization that MY husband had been dealing with my RA for five…long… years. How about that, bucko? <br /><br />My husband had all of two years with a healthy woman (not 30 plus) before he knew the joys of lifting his wife in and out of the bathtub every night, or being the one that ALWAYS had to move the baby carrier in and out of the house. He now awakens in the middle of most nights to give me meds. He has not slept in on a weekend since we had our child. He watches his siblings buy new houses, new cars and take nice vacations while he spends his money on celebrex and assistive devices. He has allowed that his disposable income (and eventually his non-disposable income) has gone to keeping my joints from turning to steel. <br /><br />And after all this, when my husband feels the need to get frisky and I insist that I can’t move, he’ll say, “That’s ok, I can do what I need to with you laying just like that.” <br /><br />Yeah…it is pretty funny, and yes…it does always work. I'm ashamed to admit, but I guess I am just a sucker for unconditional love and acceptance.<br /><br />But the point here is…has my hubby ever once threatened to leave? No way…he’s not a bitch. He’s just married to one…a Superbitch! <br /><br />And let me say this loud and clear: no way would this suberbitch allow for anyone to be here if he didn’t absolutely want to be. Furthermore, my husband knows that whether my joints are swollen or not, it still IS…has always BEEN and will always BE my round ass he’s after. And we all know the way into our pants is through our voltaren gel…so start rubbing baby!superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.com2