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.