Limbo

May was a lousy month.

I started out the month in a lot of pain. This time, it was in parts of my body that had not really bothered me before. I woke up one morning and my knees looked like grapefruits. Another night, I couldn't sleep because both of my shoulders hurt so much. Then there was the excruciating neck pain, making it difficult to drive and check my blindspot without wincing. I'd been taking the mtx/prednisone cocktail for a month and a half. Are you serious with this shit?

According to the Rheumatologist, this is not acceptable. "You should not be in this kind of pain", she remarked in her thick Russian accent. "We will have to increase your Methotrexate and start you on Humira injections as soon as possible". She wrote me the prescriptions, warning me that it could take a few weeks for my state-sanctioned insurance to approve it. Since I've gained twenty pounds on prednisone, I'm at risk for medication-induced diabetes---another great reason to get me the hell off the steroids. Not to mention the skin problems, puffy face, and chronic, gnawing cravings for Hostess Snowballs.

Almost three weeks later and no Humira. State insurance is horrendous. I have made countless phone calls to the doctor, the pharmacy, the state and as of today, still no approval. I understand that apparently each shot of Humira has a retail pharmacy price between $800-1000. Of course the state is going to argue that I should be prescribed something else. But why is it so expensive? What's in it? The plasma of some rare rainforest bird? Plutonium? Eye of Newt?

Thanks to some savvy investigative work on behalf of my Rheumy's medical assistant, we were able to determine that the pre-authorization was getting hung up simply because of the date. Supposedly, I have to prove that the Humira is medically necessary by trying another combination of cheaper meds for at least three months. This trial period expires the third week of June, after which they will approve the Humira. It's pretty jacked up considering that I've been taking my current med combo for more than six months now, but was only approved for insurance three months ago. Red freaking tape is what that is. In the meantime, she's going to supply me with a month of sample injections and will teach me on Friday how to give myself the shots.

I was laid off the second week of May from low-paying, uninspiring job. Considering how poorly managed the entire operation is, how little they are investing in things like marketing, and their overall ambivalence, I'm not at all suprised. Okay fine. I interviewed for a few different jobs, got very close on one I really wanted, and then choked at the second interview. I notified all of last year's clients that due to my extenuating medical issues this year, I will not be doing business this season. Sure, I could have made some money doing installations and landscape consulting this summer. The problem is that since I don't know how I am going to feel from one day to the next, or how physically mobile I will be, I just don't feel good about committing to do landscape jobs. It's just too iffy right now. I'm angry. I'm frustrated and disappointed. I've got a degree that I can't seem to use for employment right now because I can't rely on being able to do the work. The toughest part of looking for alternative work is convincing prospective employers that my skills are transferable. I've done a ton of administrative work, interviewing and recruiting, training and development, HR, tons and tons of writing (blogs/newsletters/catalog copy/articles, etc) and hardcore, one-on-one sales consultations. Extensive retail management, writing and developing presentations, class development and presentation. What is making this so difficult for me? Why does it feel so impossible to even get an interview?

I'm hitting a wall. I'm beginning to believe that I have no skills or abilities. It doesn't help that my body hurts in a million different places at once, I shake when I try to lift a bag of cat litter into the shopping cart at the grocery store, and my neck only turns half way. I'm finding it harder and harder to feel good about myself when my face is puffy, and my skin is thinning from the medications. Some days I feel like my body is a monster that has escaped the castle and is staggering about the countryside.

So for now, I wait. I file my unemployment, I send out resumes, I try to occupy my time with cleaning the house, baking a fruit tart, taking a nap. I don't know what to expect from the Humira shots or how I will react. I guess I just won't make any concrete plans until I have a clearer picture. I'm hanging around in purgatory like some lost soul deemed too virtuous for hell. Or waiting for a bus that never, ever comes.

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.

Moving through

I spent some time this afternoon catching up on my favorite RA "good reads". There's so many people out there with fascinating stories and important things to say. We share the experience of autoimmune arthritis, and yet our lives are so different. We are all somewhere along the road in our raggedy machines, prone to stall and break down, coast along with empty tanks, navigate dangerous turns on bald tires. I never get tired of other people's stories. And it's always healthy to step out of my own from time to time.
I noticed today how all the rain we've had recently has made things grow here. The grass is almost long enough to mow now, our daffodils are in full bloom, my Jekyll lavender is showing new leaves. The weeds are returning in cracks along the driveway. There's a lot I could do in our yard now. And I feel stuck because I have been so ill that I haven't been able to do it. This yard begs for new garden beds, lettuce plants, a new bird feeder. I'm inside the house looking out at all of it and wondering when I will be well enough to tend to it again. I said aloud to myself "I will feel better and it will all get done at some point". But will it? Or am I kidding myself about the nature of this disease?
Last week I noticed things about my body that I had not before. I began to feel pain in more joints now---the large ones at my hips, my knees and shoulders. I started to worry that the medications are not working.  And the fatigue makes me feel crazy at times. This was the hardest week yet at work because I felt so lousy so much of the time. I'm still suprised by this disease, more often than not, shocked at the swiftness with which it has moved in less than a year. Even more bewildering are the brief periods in which I feel somewhat "normal"---I notice that I begin to think and plan my life again, like Norma Desmond in "Sunset Boulevard" plotting her big comeback. First, I'm going to update my gardening blog and stay current with it. Then, I'm going to use my yard as a creative incubator and test out all kinds of plants, organics, and growing techniques. And then, I will use my gardening and writing to springboard me back into my career.
Uh-huh. I've been setting myself up this way for as long as I can remember, getting so far ahead of myself that I feel completely overwhelmed and like a tired animal, I just sit down. Do nothing.
Let's face it. My control is somewhat limited at this point. I can plan all I want and reality is that more and more often, my body needs. My body has no qualms about demanding that her needs be met promptly. If my hands hurt and I continue to push them, they will eventually hurt so much I have to pay attention, or just stop working and freeze up. RA is a trickster, a shapeshifter. When you think you have it beat, when you're getting used to feeling pretty normal, it reappears in a different joint. Just a few weeks ago, I went to a concert in an old hall downtown. The building is well over a hundred years old, with four or five stories and a rooftop deck. My pain that week had been manageable, and I think I forgot to be aware of my joints. My friends and I climbed from one floor to the next, up and down again several times and I didn't think much of it. The next morning, I was so stiff and sore I could barely walk. Yet I'm still always suprised, and I spend a good couple of hours denying there's anything hurting. I guess that's progress---at onset, I spent literally several weeks telling myself it was nothing a couple of Motrin and some ice couldn't fix.
I was raised in a working-class, midwestern German household. Life revolved around work, school, and household responsibilities. Physical illness, injury, or disease were all a figment of one's imagination. No excuses, you were expected to "pull yourself up by your bootstraps", suck it up, and get back to work. I can recall my mechanic father cutting his hand on a piece of sheet metal, and stitching it up with a needle and thread. These people were hardcore. Needless to say, when my ankle is killing me or my knee is swollen, I tend to delay dealing with it until the joint gives out. I barf up my medication and drive to work anyhow. It's what I know, and a hard habit to break.
So I'm trying to find a balance between the familiar ways I've moved through the world and how I will going forward. Looking out the window at the backyard, I feel overwhelmed with the work that I need to do to build a garden here. Pissed off that we left a place where we'd established such beautiful beds, overflowing with blooms and ornamental grasses from spring to late fall. I have more room to grow here, but I have to start over again. I have to figure out how to modify the work to make it easier on my body, use adaptive tools, ask for help with the really heavy work. It can be done---but in stages---small digestible bits I can manage. It's not just the garden, it's everything now---work, taking care of the house, laundry, even down time must be adapted to make room for present circumstances. I have to change the way I look at all of these things, how I define "success" and "failure", and what it means to be really engaged in my life. Maybe it means I won't go back to working a sixty hour week, maybe it looks different than what I'm familiar with. Maybe it means finding a soft place in the middle to land. If I can't dance four days a week because it hurts too much, then I will start by swimming one day. Or two, if my body allows. I can't beat myself up for falling short some days, because as we all know, some days are just like that. I will adapt, edit, modify my life and just keep moving forward. I've got to stay flexible. RA may be devouring my body, but I'll be damned if it will eat my soul too.