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.

What to do when you don't know what to do: Five Ways to Self Soothe

"It's like a jungle sometimes/it makes me wonder/how I keep from goin' under..." ("The Message", Grandmaster Flash)

It's been a helluva week.

In addition to having my hours cut at work by more than half, I had the extreme pleasure of dealing with both medication and insurance issues. Add to this the fact that spring has blown open, I'm grieving my old career and shaking off the ghost of last year's bad job, and I am one hot mess. Tore up from the floor up so to speak.
After nearly twenty years in and out of therapy, I've learned a thing or two about how to deal with tough times. Don't worry, I don't intend to blow sunshine out of my ass or spout some kind of Oprah-esque, inspirational nonsense. If you've stumbled upon my blog looking for puppies, butterflies, or Jesus---you're in the wrong place. I like to think I'm much more pragmatic than that. Let's be frank: life is a life's work. For chronics like myself, coping with physical pain can lead directly to emotional distress. It's hard to live with a serious illness, manage medications, diet and exercise, adapt daily living to accommodate physical limitations, and keep up with one's responsibilities. Simply put, I fight the good fight every day...and sometimes I just want a break. There are a few skills I've learned that seem to help me soothe my weary self.

Quiet time. Not exactly a nap, though I have been known to end up there. Sometimes this just means sitting or lying down in a comfortable position for a short period of time and allowing myself to notice where in my body I am experiencing sensations. If physical pain is the prominent issue, I allow myself to label the body part where I'm feeling it ("neck...hurts"). Then I turn my attention to my breathing, paying attention to the flow of air moving in and out of my nose. If I find myself thinking about the pain again, I gently acknowledge the sensation, and then return my attention to my breath. You don't need to "control" your thoughts, or "stop thinking", as this is what your brain does naturally. Just keep coming back to your breath. If it helps, set a timer and try doing this in short increments, like ten or fifteen minutes. There's something I find calming and centering about this exercise when my brain is working overtime or I'm feeling overwhelmed.

Gentle exercise. Recently, I started taking an Arthritis Foundation aquatics class. While it's always a little unnerving to put my big ass in a swimsuit and go into a pool with other people, hey---a lot of them feel exactly the same way about their asses. So put on the suit and go. The warm water feels fantastic on my sore joints and muscles, and makes me feel a little weightless. The AF class uses only your body and the water as resistance, and is very gentle. You won't get great cardio here, but that's not the point. The goal for me is two-fold: to do something that feels good, and to keep myself moving. Honestly, the hardest part was getting up and going to the first class. Now I can't wait to go back to the pool.

Listen to music. I've taken comfort in music ever since I was little. I lived in a crazy house with adults who fought and screamed constantly, so I learned at an early age to pull out my stack of 45s, turn up the volume and drown out the chaos. It doesn't matter what kind of music you like, if it makes you feel good, then put it on and turn it up. If you feel like moving your body, find a private spot where you can get your groove on. Or if you just want to chill out, get out the headphones and pop on your favorite album rock. Classical, world music, oldies, it's all good for you. As a huge fan of eighties punk, I find myself restored by the Ramones sometimes (yes, Joey and DeeDee and Johnny). Cheezy prog-rock of the seventies---yeah, I love that too. Love Motown, Brazilian, big band, classical. It's all restorative to the mind and body.  Like the Beastie Boys say "kick off your shoes and relax your socks".

Make something. You say you can't even draw a stick figure? Big whoop. All of us are creative, even if we don't realize it. I think the key to mastering this means of self-soothing is this: do it for yourself, not for applause. Expand your definition of creation to include all those things you do regularly and don't even think about. If you like to cook, try out a new recipe. Pick up some silk flowers, a hair clip, and some glue from the dollar store and make a decorative barrette. Paint your dining room, a thrift store chair, or a pair of sneakers. Plant a pretty pot with herbs and place in a sunny windowsill. Try out some lime green nail polish on your toes. Iron a funky patch on your jeans. Heck---make a portrait out of different types of dry pasta. Do something fun, and give it as a special gift to yourself. This is not art for public consumption, and no one else even needs to see it, this is purely for YOU.

Get out. Chronic illness can keep us isolated. The last thing I feel like doing when I'm feeling down or burned out is leaving the house. Sure it's safe at home with all of my creature comforts, my familiars, and my bed. But by the same token, I can get stuck there, and when I'm stuck, I tend to feel sorry for myself. I ruminate, I obsess, I worry. Like spinning my wheels in deep mud, this only makes me more stuck and prolongs my suffering. The old adage "bring the body and the mind will follow" applies here. Sometimes the hardest thing is putting on clothes and shoes and getting out the door. For me, spending time outdoors renews me and brings me back to center. If I'm physically able, I work in the garden, take a short walk, or bike ride. If I'm having a painful day, just dragging a chair onto the back lawn and sitting in the sun is enough. I especially like this at the beginning or end of the day. Last summer we bought an inexpensive fire pit for the yard, and there's nothing like it on a warm night. Birds. Grass. Trees. Outside always brings me out of my misery and back to the present. Don't just do something. Sit there.

By its very nature, illness is unpredictable. Autoimmune and/or other "invisible" illnesses can be a slippery slope. We never know what our bodies will do next, and our conditions are frequently overlooked or misunderstood. It's a battle...and then there's the complexity of just living life itself. Ultimately, all we really have that we can count on is this present moment. And fighting the good fight starts with me having the energy to keep showing up.