Friday, August 5, 2011

You Are Here.

It's been over a year now since I began my journey with Rheumatoid Arthritis. I keep finding myself reflecting on where I was at this time last year and where I am today. I want to believe I'm making progress, finding some symptom relief, managing this illness responsibly. As anyone who suffers from autoimmune illness knows, this is no easy task. There are times when the disease is actively attacking my body, with or without visible evidence. Other times it's virtually invisible, lurking in my bloodstream like a saboteur. I'll be highly functional for days, perhaps a week. I get back to moving around, dancing to Throwing Muses from my laptop, pulling weeds in the garden. Two days later, I wake up feeling exhausted, with a grapefruit-sized knee and a fever. And I'm back to zero again.

Active disease periods (called "flares") vary greatly from person to person. Some RA patients have one continuous flare, relentless pain and suffering. Others have short bursts of disease activity and long stretches of remission. Still others like myself have short remissions followed by extended periods of flare. Everyone is different, and aside from looking at a patient's unique history, there appears to be no way to predict how RA will act. This makes it hard for me to explain my health issues to my friends and family---they can see me moving around with relative ease one day, and the following week I have to cancel plans because I'm too tired or sore. I don't think there is a single person in my life who really "gets it" at this point, and frankly it's exhausting to try to explain. The only common thread I can find so far is stress: problem at work, financial worries, family drama---all seem to lead to a good, raging flare. Stress brought on my first flare, the one that got me to into the doctor's office last June and started the search for the cause of my pain and fatigue.

I've reduced my stress significantly in the past year. Quit a job that was killing me, ended with my gardening clients, took a part-time job, learned to live with a house that is not as clean as it used to be. But life will always have some unavoidable stresses. Like most people, I have moments when I get pretty freaked out. The human brain just does what it's good at---thinking---and the constant stream of thought can create stress. I try to look at my brain as a puppy that's not quite housebroken. The puppy wants to do characteristically "puppy things", wanders off to chew on something. You gently place the puppy back on the paper. He wanders off again and you carefully put him back and say "go on the paper". When the thoughts are racing and my blood pressure is rising and I feel overwhelmed, I just focus on my breath, following the air flowing in and out, and count to ten. The brain is elastic and can be shaped, patterns of thought can be changed.  Sometimes I have to do this a couple of times, but eventually it works. It's still a struggle some days, but I know that keeping it in check is essential to managing my RA flares.

The medications have been a bit of a struggle. I have moved from steroids only, to steroids with MTX (a disease modifying antirheumatic drug), to steroids and MTX with biologic agents. I've moved to a second biologic after failing on the first. The biologics (also known as Tumor Necrosis Factor Inhibitors) are pretty well known meds like Humira, Enbrel, or Cimzia. The disease modifiers (DMARDs) and tumor necrosis factor inhibitors (TNFs) are essential drugs in treating severe RA, as they are the only weapons available to fight bone erosion and joint destruction and help prevent secondary conditions such as rheumatoid lung involvement.What the drug companies and the doctors don't tell you is how toxic these medications can be. These are drugs designed to suppress an overactive immune response, and subsequently the patient is left with little ability to fight infection. It's not unusual for many patients to develop serious or even life-threatening infections. My rheumatologist didn't tell me that I would experience some hair loss, nausea, or mouth sores---I learned this on my own. After doing some research into these drugs, I learned that these are only the MILD side effects, and I could apparently be doing much worse. So I suck on mints constantly and drink a lot of diet ginger ale to settle my wonky stomach. I try not to think too much about the possible long term effects of the drugs. If I did, I wouldn't sleep much at night.

And so far, the Enbrel is working pretty well from what I can see and feel. Pain level is down to a five most days, obvious joint swelling is down, and fatigue has diminished a bit. I sure would like to eliminate the daily steroids, but I want to be sure the biologic is working before I try to go off Prednisone.
My rheumatologist is leaving the practice at the end of August, and I have made an appointment with another one. Since Rheumy #1 was operating somewhere between "poor" and "fair", I guess it's okay that I'm losing her. I'm saying a prayer that the next one, Dr. A, will have a little better bedside manner and be a more effective communicator. I'd really like a Rheumy that can work with my GP (who I love) and act as part of a treatment team with me. I want to feel confident that I'm receiving the best possible treatment, that I am well informed, and can advocate on my own behalf when I need. 

You'll notice that there are aspects of my illness that I'm avoiding. There's things going on for me emotionally that I can't kid myself about. I am most definitely scared. 
I'm shocked at the swiftness with which my body has been taken over by this strange and mysterious illness. In just one year, RA has moved from my hands, wrists and feet to every major joint in my body and most of the small joints as well. This occurred despite taking aggressive medications to halt the spread of the disease. I'm suprised by the unpredictable nature of the disease, how it moves from one part of the body to another, changes shape, acts differently from day to day. It makes it really difficult to make any long term plans. I'm trying to keep an open mind about this entire process. I know there is a lesson to be learned here. But because RA stopped me in my tracks rather suddenly, I'm not at all where I wanted to be in my career. It's not looking like I will be returning to the landscape industry any time soon. It's not realistic at this point when I can't predict how I will feel from one day to the next. I certainly will never go back to the sixty-hour work week that the industry demands from April through September. Subsequently, I have to be willing to do a job that is less than glamorous in order to help pay the bills. It has its creative moments, but it's also a lot of tedious, boring crap like filling mylar birthday balloons and watering houseplants. Overall I kind of like it, but it does make my feet hurt sometimes despite the ugly, good work shoes. It doesn't demand that I sacrifice myself for the good of the company and when I punch out, I'm done. No more working til the wee hours on landscape drawings, no appointments at 7am on a Saturday.
I feel a giant hole in my heart where my career used to be. I try not to think about it, I try not to talk about it, I avoid garden centers and plant sales. I still identify trees along the boulevard as I drive sometimes. I still critique front yard plantings in the neighborhood, and complain to my spouse about this or that plant choice ("my god, why did they plant that there?! I would have done it differently..."). I feel a huge sense of loss because I am not doing the only thing I was ever really good at. Acceptance---yeah, I know I need to get there, and I'm not quite sure how. More than any of the physical pain and disability, my heart is broken. Medications I can deal with, side effects, pain, swelling, all that. The emotional stuff that comes along with chronic illness, that's the stuff that I'm struggling with the most. Some days are good. Some days are not so good. I guess I just keep trying to move through it.

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