Saturday, November 28, 2009

I'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 House, 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."

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?

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.

Am I the only one who feels so miserable? Have any of you ever had the, "I wish I had THAT disease INSTEAD syndrome?"

Or is it just me?

Thursday, November 19, 2009

While 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.

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.”

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.

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.

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.”


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.

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.
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.

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.

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.

And now, I have learned that any idea I had about returning to work is gone.

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.

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.

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.

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.

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.

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.

And now, here I am, once again searching for a new identity. Can I really forsee living with the job title, “Disabled Chic.”

I feel like I should tell that firefighter, “Year 3 was worst than Year 1, and Year 6 is even worst than that.”

But then I realize, “What does that tell YOU about year 10? 15? And so on?”

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.

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.

Saturday, November 14, 2009

From Daughter to Disabled Chic in 6 Easy Words

I 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.

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.

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.

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.

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.”

He did not answer, so I pressed, “So tell me, how am I supposed to overcome this disease?”

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.

He said, “That has to come from you.”

I said, “Excuse me? Last time I looked, I did not possess a medical degree.”

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.”

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!

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?”

All I could think to say was, “Oh – that’s going to have to come from her.”

He hung up.

Friday, November 13, 2009

Black and Blue

Our 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.

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.

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.

He’s an ass, and he doesn’t just strike when his football team loses.

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.

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.

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.

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.

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.

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.

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.

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.

Wednesday, November 11, 2009

Not Biased, Just Bitchy!

My aunt is losing her mind. The funny part is…I now prefer her to the rest of the family.

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.

All I’m saying is…her observations have grown more astute.

And really, who cares if she refuses to wash her hair. She can put on a nice hat to go grocery shopping.

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?”

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.

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.

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.

But then…The Superbitch in me came out, and she was not happy with his selfish appraisal of the whole situation.

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?

And then came my realization that MY husband had been dealing with my RA for five…long… years. How about that, bucko?

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.

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.”

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.

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!

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!

Sunday, November 8, 2009

“She is Frequently Kind, and then Suddenly Cruel.”

So I have rheumatoid arthritis…yeah, it pretty much is horrible. When people can’t understand why I’m having a bad day, I often say, “Hey – here is an idea…Why don’t you… try smashing a brick into your wrist? Oh? That hurts? Well, too bad; you’re just getting started. You’ll have to smash that same brick into your other wrist, of course, but then also each knee, each hip, all ten fingers, all ten toes, your shoulders if you can still lift anything at this point, your elbows, and finally, your jaw…yeah, both sides. When you are all down with that, come back and tell me how you feel, but try to stay positive! No one likes a whiner! You know, you can affect how you feel by how you envision the pain! It is really all in your mind!”

Sound psychotic?

Of course it does. Yet, we that live each day with a disease called RA (short for rheumatoid arthritis) are asked to do pretty much the same thing on a DAILY basis. Not only that, but many of us would have learned to jump up after the brick incident and go to work or play with our kids or make dinner. And dare we complain for one second, any number of people would accuse us of “feeling sorry for ourselves.” Gasp!

As one can imagine, there are MANY times during the day that I want to tell these people to go jump in a lake. In fact, there are SOOOO many things I want to say about this disease and about the public’s attitude towards it…but I don’t. Like most of you, I was brought up to be polite. And I care too much what others think. God forbid I be grouped into the “whiney” category. And I also know that if people think you’re not helping yourself, they will not help you. This is ultimately very important because if you have RA, you will find yourself having to do things to survive you would never have begun to believe before you were sick, and one of those things is to let people say crazy, hurtful things based entirely on their ignorance about your own horrible disease. You let them impart their “wisdom” so that you can make them feel better about watching your kids when you have an appointment, or giving you a job, or even picking up the tab so you can continue to send all your money to the insurance company.

But I’m so so tired of keeping my mouth shut. It is who I AM in my real life, the woman with the brave face and enough optimism to keep everyone smiling when I’m limping, the consummate cheerleader, Rebecca of Sunnybrook Farms, Suzy Sunshine… and let me tell ya, it is sickening to my alter-ego.

And here she is – my alter-ego. I have brought her out for purposes of this blog. She is mean. She is cranky. She should be; she deals with constant pain and limitations. She gets told “no” a lot. She swallows over twenty pills a day, and is pushed around by her family, strangers, insurance companies, co-workers and even doctors who think she should accept her reality. And now, she is fed up with the hand she’s been dealt. She has “snapped,” so to speak. She is about to say what she’s thinking about this messed-up disease and she will take no prisoners! She is going to let it all out without fear of consequences. She is going to make people angry and then sit back and smile that she did. She will say it like it is so that the rest of us can hear it. She is essentially Gabby Solis from Desperate Housewives with an auto-immune disorder, and she is ready to blog.

RA Guy says we are super-heroes if we are all living with rheumatoid arthritis. He couldn’t be more right. So by day I’ll continue to be an RA superhero. I will raise my family and do my job, and send money to the arthritis foundation and educate myself and my doctors about my condition… but online I will be a rip-roaring, you can’t stop me from saying it, true to my word- Bitch!

So part superhero and part bitch. That makes me a superbitch.

I AM an RA Superbitch, and this is my blog. Enjoy.