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.


  1. Thank you for sharing your story. Because of the RA I'm struggling with the loss of my job, income and retirement savings. I'm 40. If it weren't for my parents generosity I would be completely bankrupt and living on the street. I used to work extremely hard and had a very well paying job. Now I am broke.

    I had to move from Los Angeles, my adopted home, back to Michigan and in with my parents (at 40!) while I trying to get myself "stabilized". I am getting ready to try to enter the work force again. I can no longer do the job I used to so I'm starting completely over. It's going to be hard to find ANY job here in Michigan, the worst states economy in the US. (It's seriously desperate here.) I doubt I"ll find something for more than minimum wage............Things look bleak but I'm trying.

    The point is, I understand the whole "work issue" with this disease. It scares the hell out of me to think about the future. I have been paralyzed with fear and self doubt about my prognosis and my ability to support myself after the rapid onset of this disease in June of '08.

    Your right, I could end this post on an up note and say, "I'm doing the best I can", which is true. However, I really just want to scream, "look what's happening to me!!!!!! Can anybody help me?" No one seems to notice.

    I'm terrified of what's to become of me.

  2. Oh aye. 'Plan Z' in my RA book. Get crippled, get poor, die young, bring my family down with me. Always on the cards, with this or any other illness. It could be quite interesting in the short/long run. Your story is not pitiful. It's a crying shame for you, but it's not pitiful. Chin up love, equanimity will come back in time.

  3. I wish I could tell you that there will be better days, but I know that is not true. I hang on to hope on a daily basis. I plan everyday for the day that I can no longer support my family financially or for the day where I will not be able to take care of my family at all. Sometimes, the thought of it brings me to tears. Being positive is hard with RA. RA is a grim future. And you’re considering narcotics for the pain – who would blame you? Don’t be too harsh on yourself.

    My days are getting harder and I am scared of the next two years, five years, ten years, 15 years and further down the road. I have a 14 month old and a nine year old who need me and it scares me to death what our future will be with RA.

    I blogged the other day about how lonely RA is and your worries resonated in my mind as well. What more can this disease do to me and my family? I know it is going to get worse and it scares me to death, and of course, it will do more.

    I miss not being in pain everyday of my life. I miss being active. I hate what this disease has already done to me and my family. RA is hard. We fight because we have no other options. We just ourselves out of bed every morning because we HAVE to and that is simply just not fair.

    I am here if you just want to vent. I vent a lot too and no one gets me, and that is not fair either. My email is Email me anytime you want.


  4. I'm so sorry. This really, really sucks. Thanks for writing about it even though it was hard. It's a part of the reality of this disease that people need to look at.

    I sometimes wonder if this will happen to me. I posted recently about acceptance vs. giving up - in a way, it was also about the struggle to maintain an illusion of control over the situation, although I didn't put it that way at the time. I keep trying to make a living as a musician, which is a very physical profession completely dependent on having working arms and fingers. I already see it getting harder and harder.

    It's been two years for me and I'm not in remission. I've definitely improved, but there are still times when it seems like the meds aren't doing anything. And I'm nowhere close to my old self. My doctor also spoke as if it were a simple matter of finding the right med combo, and then I'd be back to normal. He says now that I am one of his more difficult cases. It's hard to explain that to other people, who think I must have a bad doctor or must be doing something wrong. But the truth is, some of us just don't respond well. I'm sorry you're one of them.

    Anyway, your "audience" is here for you, grateful that you are writing, sad that you're going through this. This is one of those times I wish I had a magic wand.

  5. I'm sorry.

    I don't have anything really profound to say, so I'll just say, this sucks - completely. Thanks for having the courage to write about it.

    In 24 years with RA, the only thing I've really learned is that you never actually know what the future holds. You can't plan for anything. I've had great times, awful times, and lots of in-between times. But you never know which is coming next.

  6. My heart aches for you, the other commenters to this painful, honest post, and for myself. I do understand what you're saying. I empathise. I've had RA for 22 years. Sometimes it feels like I just can't face another day. Sometimes I feel like I can struggle through. And sometimes, having RA is not a big deal. So it's a matter of living in the now, a day at a time.

    I'm also unemployed, though it wasn't my RA that caused my job loss. I was simply laid off after nearly 15 years with the company. THEN my RA came back, after a long remission (this CAN happen; I'm proof). I've not found new work. I've used up my savings, my nest egg, and unemployment. I'm scratching to get by and hoping to find some sort of job I can do. I have little hope of ever making enough money to be comfortable, but I'll just keep on keeping on.

    But more than anything, I'll keep looking for the kindness and beauty the world has to offer each and every day. There are gifts, if you can bring yourself to look. They won't fix your problems, but they can sure lighten your heart, your mood, and ease your mind for a little while. Live in the moment, mindfully, and life doesn't seem so bleak.

    You can write to me, too, any time you want, SB. And that goes for the other commenters here. We need each other. We can cry and we can laugh, but mostly, we can live -- and know that we aren't alone and that other people DO care and understand.

  7. I remember when I was a child, telling myself that by the time I was 18 I'd get better or they'd find a cure. That age moved to 21, 25, 30... finally I had to face the fact that very likely a cure will never be found. There is no one size fits all when it comes to treating RA. RA is a collection of symptoms, like a syndrome, not really an identifiable disease you can pin down. I went through a long period of grief and anger, almost, EXACTLY like grieving a death. The disbelief, the anger, the bargaining, and finally acceptance.

    I'm extraordinarily lucky that the Mtx/Enbrel combo seems to work for me to keep the disease progression at bay...but let's face it, I'm almost 50 and symptoms of natural aging are setting in. Only in someone like me, it's happening quicker. I never know when the next joint is going to "blow". It's tough to plan a life around that.

    So even though I'm doing relatively well, I'm always waiting for the other shoe to drop. Not fun.


  8. Carolan - I had the same experience.

    I was diagnosed at 2 years old, and the doctors told my parents I'd be better by the time I was 13. I remember hitting 13, then 14, then 15, and wondering what the hell was going on. It felt like some kind of awful joke.

  9. SB, I'm sorry, this isn't fair. We have quite a bit in common. I was diagnosed with RA 6 years ago, although I had it longer before being properly diagnosed. My first rheumatologist did very little for me. My second, whom I still see, has made a world of difference. I continue to work a very physical job although I can see that it is harder on me than it was just a couple of years ago. In the 6 years of treatment, I have never been pain free, I'm not convinced remission exists for RA although I hear a lot of talk about it. This year the Enbrel just flat quit working for me and I switched to Orencia. I am some better, not as well off as a lot of people that are taking it and experiencing great results. I have one real passion left, riding my motorcycle. I ride every chance I get because I know my days are becoming numbered at riding and perhaps even working. RA is cruel disease.

  10. My disease is different, but my experience is similar.

    I have Ehlers-Danlos Syndrome and fibromyalgia (and a host of other comorbid stuff).

    When I first got sick, it was...well, we'll figure out what it is, and then we can treat it.

    After a year and a half of fighting this unknown goblin that stole my energy and left pain and more pain, I finally had a diagnosis.

    The diagnosis damn near broke my heart, can't fight EDS. You can slow it down, or at least try to, but that's about it. It's genetic, this flaw that makes my joints so fragile.

    And fibro, well, there's only so much you can do about that.

    Now, 2 1/2 years since I got sick, and almost 1 year after my diagnosis, I've applied for social security.

    It's ridiculous. I've got two degrees, and am about 2/3 of the way to a third degree, I am, facing the fact that I will never work a 'normal' job, and quite possibly will never work at all.

    I paint, and I make things. It helps a little, to imagine that at least I might be able to contribute towards our household that way. I write, as well.

    I wonder why I am still continuing in law school. I think partly because I have fought so hard to stay in this long, and the idea of having to give up before I get the damn degree is galling. I haven't fought for 2 1/2 years to give in, but at the same I fighting just for the sake of fighting? And if I am, what's the value in that and when do I decide that it's enough?