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.

Proceeding with Caution

Be careful what you wish for. Especially if you're wishing for a medication that will bring you relief.
Almost six weeks after submitting my Humira prescription for pre-authorization, and my insurance has still not approved it. I've made countless calls to my Rheumatologist, medicaid, and the pharmacy this month. No one seems to be able to tell me when they expect this thing to go through. The paperwork is in order, I've done my part, the doctor has done hers, and after yelling at the pharmacist---the pharmacy appears to be doing their part as well. I'm a month into the shots now with sample SubQ pens generously provided by my Rheumatologist.

And did I mention that my partner accidentally broke this week's pen?  I was being difficult and didn't want to do the injection. I had removed both caps and the pen was locked and loaded when she decided that because I was dragging my feet on giving myself the damn shot, she'd put the caps back on. This released the needle and Humira leaked all over the bathroom floor. Fabulous.

Overall, I'm pretty satisfied with the level of pain control the meds are providing. Getting out of bed in the morning is much easier, and I was able to take a walk around the block in sandals without pain. I didn't suddenly break into a choreographed dance number like Cyd Charisse. I've still got limited mobility and endurance. But there are a number of other issues that the Humira poses for me as well.

1) Extreme nausea. It's so bad that I have been chugging pink bismuth by the gallon, sucking on mints, sipping ginger ale day and night. I've never had a strong stomach, but this is level of nausea has been paralyzing. I can't do anything when I am afraid of barfing, I can't even move sometimes. It's the kind of sick stomach and dizziness that I recall from my last trip to Six Flags, the kind of sick where you pray you'll vomit---anything to just feel better for a minute. It's not just the day after the shot either. It's been more than ten days since my last Humira shot and I'm still struggling with the nausea.

2) Extreme fatigue. Some days it's all I can do to take a shower and wash my hair---because my arms feel so heavy I can barely lift my hands to my head. It's taking me almost twice as long to do all the usual daily things like showering, dressing, putting on makeup or drying my hair. Unloading the dishwasher could take me half an hour. It's utterly maddening. Yesterday I got halfway through getting ready to go out and started to cry, just because the process was excruciatingly slow and frustrating.

3) Muscle weakness. I can't seem to lift more than a couple of pounds and have lost most of my hand strength. My legs are wobbly and unsteady when walking up stairs. In the past week, I have had to ask for rides twice simply because I felt too weak to walk through the grocery store on my own or drive my car to the bank. Aside from the time I had the Chickenpox when I was in my twenties, I have never, ever been this weak. It's quite scary for me.

The other side effects---the digestive problems, the dry mouth, cough---all those things I am willing to live with in order to get my disease under control and prevent my body from eating itself alive. I realize that for the rest of my life, I will probably have a near-constant mild/moderate level of pain.

Another visit to the Rheumatologist this week for my six-week blood work and a quick chat. I explain the issues I have been experiencing with the Humira. She actually appears to have heard me this time. "You've been on the medication long enough and these side effects should have subsided by now. I think we should try you on something else...". Enter the Enbrel sample shots. So much for the laidback, twice-monthly Humira shots. It's hardcore weekly injections now. This SubQ pen is much easier for me to use, doesn't appear to be quite as fragile as the other, with a clear window that turns purple when the meds have been properly delivered. And a little burny, with a warm spreading sensation that creeps me out.

Of course there's the terrifying informational insert that comes in the package. If one is even remotely squeamish, or not much of a risk-taker, it makes for a gripping read. Then there's the raging headache that starts an hour after the shot. But I am relieved that it doesn't make me feel like I've been hit by a truck. So far the fatigue is manageable. Okay then, I may be able to get on board with the Enbrel. The morning after that first shot, I woke up and my feet and ankles were swollen like a matching pair of fat mini-dachshunds. I call the Rheumy again and she asks me if I ate anything salty. "Uh, this is not normal for me, regardless of what I've eaten". She tells me that while it's an unusual complaint, because my breathing is normal and I have no other symptoms, she's not worried. I should continue to take the shots. And she's right---the swelling vanishes after a day or so.

Of course all of this requires an entirely new round of paperwork for medicaid, and weeks of waiting for authorization.

I start a new job this week. I will have to be on my feet for 5-7 hours at a crack. I am cautiously optimistic that I'll be able to do this, and that in a few weeks the Enbrel will kick in and kick ass. I'm still struggling with being fully present to my body as it is today. I can't help but remember where I was at this time last year, how strong I still was, how much work I was still able to do in the garden. It's a little surreal and often rather frustrating. And it is what it is.

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.

Brain Fog

I am exhausted.
It's just past 8am and I've been awake two hours, have had several cups of coffee, watched the news on MSNBC. I allowed myself to hit the snooze button for half an hour, until six. And I'm supposed to be at work shortly. I can't imagine how I will get through the day when all I want to do is lie down.
Up until last summer, I was always a pretty energetic person. Years of waking at the ass-crack of dawn to go to work has trained me well---I don't normally sleep much past five or six in the morning, and naturally wake up at that time. After I had to quit my job last year, and began taking prednisone and mtx, all of that changed. Now I simply walk around all day in a perpetual haze, a weird half-life in ether.

Other things are happening that I find alarming regarding my drowsy existence. My memory, which had always been phenomenal, recently began to slip. Years of working in a bookstore (with no computerized database, I might add) combined with my botanical education had allowed me to recall all sorts of information with ease. Yesterday, I had to ask my coworker what day it was. When customers give me numerical data, I have to write it down immediately or face the embarrassment of having to ask them to repeat it. I can't recall which band sang a certain favorite eighties classic, what kind of cat food our guy prefers, or the common names of flowers I see at work every day. It's beyond frustrating. It makes me sad on a deep level. Not only has my body turned against me, but my brain, like Elvis, appears to have left the building. But it's not just me having difficulty stringing my thoughts together to form a sentence, forgetting what day it is, or losing the correct words for an object or person. This is a real thing that happens to people with autoimmune diseases for any number of reasons. I discovered this by googling "RA brain fog". Disco. I am not the only one struggling with this issue.

Any number of autoimmune and central nervous system diseases, as well as the medications used to treat them, may cause "cognitive dysfunction". Since many of these conditions show symptoms that may overlap with one another, uncovering the source of brain fog seems to require commitment on behalf of both patient and physician. It is altogether too easy to simply dismiss subtle changes in mood, thought, and behavior as part of the disease or medication-related when symptoms may indicate the presence of other conditions. Depression, fatigue, and inflammation can influence brain function. Blood vessels in the brain may be affected by vasculitis, an underlying thyroid condition may exist, or the patient may simply have a vitamin deficiency. A comprehensive physical exam, medication review, blood tests, and neurological work-up may help determine the source of the problem. I've found it helpful to keep a "health journal"---weekly observations on what's going on in my body, including notes on mood/thinking and any other changes I have noticed. New observations have included the following: extreme fatigue, shaking in left hand, pain and swelling in knees/shoulders/elbows, super-bad neck pain, dry eyes and blurred vision in left eye. General stupidity and inability to recall simple, familiar data.

Good stuff. What the f***?

My current Rheumatologist seems to take a "quick and dirty" treatment approach that I strongly dislike. I have seen her three times since December but she has yet to take my vitals and did not attempt to discuss the results of my Sed rate, CBC, or CRP tests. At our last appointment, I mentioned that I have been experiencing widespread muscle pain and weakness and her immediate response was "Fibromyalgia...but we won't worry about treating that right now...". She seems to have to reacquaint herself with my history every time, but can write a prescription at warp speed. I'm in and out of the office within ten minutes. I have come to every appointment armed with several pages of notes and questions, but my brain fog makes it hard for me to advocate on my own behalf. My thinking is simply too disorganized to keep track of everything that takes place in that short time and write anything down. Do I need to take someone with me to help me?

I do have the names of three other Rheumatologists. I have them written down in the little notebook I carry in my purse. I think I need to make some phone calls. Note to self: find another doctor. Write this down before I forget.

Waiting

I'm anxiously awaiting two important items to arrive by parcel post: my shipment of vitamins, and my ticket for the Pixies concert later this month. Since I have the patience and attention span of a coked-up lab monkey, it's a darn good thing that I can track the orders online. I have been assured that both the box of vitamins and the ticket are on the way. That gentle rap-tap-tapping you hear may be my fingertips drumming the desktop impatiently. Come on already.

Waiting. Going into week four of my mtx/prednisone cocktail, and crossing my fingers that I will begin to see some kind of lasting pain relief. RA makes each day another spin on the wheel of pain---where will it land today? Yesterday it was in my hands, wrists, elbows, and right hip. Today, it's the hip, elbows, and neck. And last night I couldn't sleep, my calves, feet, and toes twisted with spasms. I stumbled out of bed towards the coffee pot this morning exhausted, hoping for some cooperation from my body today. Just a few productive hours. There's phone calls to the insurance, housecleaning to be done, grocery shopping, errands. There's a life to be lived somewhere in here.

I've inherited my mother's habit of list making. I keep datebooks, index cards, and pocket-sized notepads of things that need attention, questions for the doctor, dates I need to request off work. Shopping lists, mix cd tracks, books to read, household parts and supplies. And then I find the lists crumpled among my piles of laundry. Some have items carefully struck to indicate that I've completed them, and others, entire lists I've forgotten. It is my way of mooring myself to real life and giving meaning to otherwise tedious minutia. On some level, my lists let me deny that I am anything but normal---"normal" people have priorities, therefore make plans. Sick people don't.

I struggle with the idea that one's priorities change. When I became ill, I was forced to fully inhabit my body, to become present in the moment. I was no longer able to deny or distract myself with plans and goals, with my lists of things to see, do, buy, or become. Pain and fatigue are so immediate, undeniable, that they demand your attention. RA fatigue is more than simply feeling tired: it is an exhaustion so deep and paralyzing, you feel as though every limb weighs a thousand pounds. My plans---to focus on my career in horticulture, to write, to make a name for myself as a designer, speaker, and educator---suddenly took a backseat. My body began to drive the bus. My priorities shifted to what I could do in the next few minutes or hours, what pain I could tolerate before my meds kicked in, and what I could accomplish while so exhausted I could barely move.

In the past year, I have managed to keep working part-time, navigate the state-assisted insurance system, and help keep our household going. But I've had to accept the fact that I cannot do what I was once able. I still struggle with this on a daily basis. The job is neither stimulating nor demanding, but on days when I've got a fever or a lot of swelling, it feels like running a marathon. I work my measly six hours and come home and sleep. My house is never quite clean enough, and I always see something that I'd like to do. I measure the amount of my expendable energy against those things: clean and dust the baseboards or take an NSAID and a nap? Call my mother or do a load of laundry? Load the dishwasher or color my hair? I operate now in small, manageable bursts of activity. Many tasks fall through the cracks and I feel frustrated. I can't scrub out the tub like I used to, because my hands can't hold the sponge right anymore. I have to settle for a little soap scum, gray hairs and roots showing, and dust in the corners. I have to settle for the fact that I may not have the fast-track career I once pursued---I may not even be able to weed my own garden, let alone maintain someone else's. I cannot make any plans beyond today because I don't know what to expect from this blasted disease. I must observe my body, respond to its needs, wait and see what comes next. 

And this is only the beginning. What happens when I start taking Biologics ? Will I feel better or worse? If I am able to do less than half of what I could eight months ago, where will I be in another eight months, two years, five years? I don't know. Doctors cannot predict the course of this disease. I don't know, and I have to accept this not knowing on a profound level, in my gut, in my heart. I've got my list of things to do, and I just strike those items one by one by one. I throw out one list and start another. My orbit gets smaller and smaller and I wobble with every circuit. I must simply wait and see.

My concert ticket arrived in the mail. Scratch that off the list.

So you think you understand Rheumatoid Arthritis?

I struggle with knowing when to talk about my disease and deciding who needs to know about it. What's more, I struggle to feel as though my friends and family truly understand the nature of this illness. It's unfortunate that the word "arthritis" is attached to a disease that is so insidious and affects its sufferers on so many physical and emotional levels. While "rheumatoid" comes before "arthritis", I sometimes feel like people don't hear what I am saying until they think they can identify a familiar word---oh, arthritis---I get that in my ankle when it rains, my grandmother has that, or I read that you can cure it if you stop eating white flour. And when they think they understand, they stop listening. I wish that we could rename this disease Systemic Autoimmune Syndrome, because for so many of us, RA is a cluster of symptoms that occur to varying degrees with or without actual joint pain. In addition, many different autoimmune illnesses seem to overlap and what I have learned is that having one can open the door for others. Treatments for such diseases can vary greatly according to each individual's tolerance for medication, co-occurring conditions, and pattern of disease activity.
Here are some points I would like to stress to those who know or love someone with Rheumatoid Arthritis. Please keep in mind that I am not a medical professional and this entry should not be misconstrued as medical advice; these are merely things I have learned about my disease over the past eight months through my own doctor and independent research.

1) RA is a serious autoimmune disease that occurs when a person's immune system suddenly attacks itself. In early stages of the disease, there may be few if any symptoms. As the disease progresses and the immune system destroys joint material, pain, swelling, and redness can occur. Small bones of hands, wrists, and feet are often the first attacked, but damage may take place in nearly any joint in the body including knees, shoulders, elbows, ankles, hips, cervical spine, larynx, or jaw. In addition, patients may experience fevers, numbness or tingling in hands and feet, "explosive" episodes of joint pain that comes on and resolves quickly, sore throats, swollen lymph nodes, extreme fatigue, and an overall "malaise" similar to a bad case of the flu.

2) RA is often invisible to the naked eye. Patients in early stages of the disease may show little if any signs of joint destruction or disability, but may still experience a high level of pain.

3) While symptoms of RA can be treated, it is a chronic illness that requires lifelong treatment. Autoimmune arthritis may be caused by a combination of environmental, genetic, or hormonal factors, but research has yet to pinpoint an exact cause. Therefore, it is not preventable.  

4) RA can affect the entire body---lungs, heart, eyes, liver, kidneys, digestive, reproductive, and neurological systems may be involved. The disease can also affect the cricoartyrinoid joints in the larynx, causing problems with voice and breathing. Low grade fevers are common during disease flares. Pulmonary nodules are small cell growths that can occur on the heart and lungs as a result of an overactive immune system. Blood vessels throughout the body may be affected, a condition known as vasculitis. Complications of these issues may pose a serious threat to RA patients and if left untreated, may be fatal.

5) There are generally three classes of drugs used to treat the disease: cortosteroids, disease-modifying anti-rheumatic drugs (DMSARDs), and tumor necrosis factor (TNFs). Some of these drugs can trigger a host of problems such as diabetes, stomach ulcers, secondary infections (staph, MERSA), liver disease, eye problems, hair loss, periodontal disease, depression, sleep disturbances, loss of bone density, spinal instability, lymphoma, and heart disease. Many patients are monitored closely by their rheumatologists through frequent blood tests that look for signs of medication toxicity and secondary diseases. 

6) Subsequently, the side effects of medication can be devastating. Common side effects such as dizziness, nausea/vomiting, diarrhea, headaches, widespread muscle pain, weakness and fatigue may make it difficult for sufferers to go about their daily lives without some loss of function. 

7) While laboratory tests can find markers for RA, the disease may be present without such markers. There is no single, definitive test for RA; diagnosis uses blood tests, radiological evidence, and patient's medical history to determine if she/he may be suffering from autoimmune disease, such as RA. It is not uncommon for it to take several years before a final diagnosis is made.

8) There is no "typical" course of disease. In "classical" RA, joint symptoms occur symmetrically---at the same time on both sides of the body; but this is not always true, and when multiple joints are affected, they may be widespread. There are flares---periods in which levels of inflammation are high and disease is active---and remissions, in which symptoms such as pain and inflammation are reduced, and joint damage is limited. Some patients never experience remission, and live with increasing pain, joint deformity, and disability.

9) Recent studies seem to show that autoimmune diseases such as RA are often a precursor to other such conditions. It is not uncommon for people diagnosed with RA to develop additional autoimmune diseases such as Lupus, Sjogren's Syndrome, Hashimoto's thyroiditis, Vasculitis, Reynaud's syndrome, and Scleroderma. Fibromyalgia and Chronic Fatigue Syndrome seem to occur with greater frequency in people with RA.

10) Chronic illnesses such as RA can have a profound impact on emotional health. The social, economic, and physical stresses that a person with increasing pain and disability experiences are countless. It is estimated that ten years from diagnosis, as many as 50% of RA patients are so disabled, that they are unable to work full-time. In addition, many patients face increasing obstacles in managing family life while suffering from a chronic illness, or have a limited support system of family and friends. Due in part to the unpredictable course of RA, patients struggle to balance their own health needs while remaining socially engaged. It seems logical that a person with chronic illness requires the support of family and friends---and an ability to be flexible within these systems as the disease progresses.

Links for further reading:
Rheumatoid Arthritis Clinical Presentation
Johns Hopkins Rheumatoid Arthritis Treatment
Are individuals with Autoimmune diseases at higher risk for co-occurring diseases?
Multiple Autoimmune Syndrome
Rheumatoid Arthritis and Depression
Psychsomatics article on RA and Depression

Benched

RA is still a mystery to me. No matter how much reading and research I do, or how many questions I ask the rheumatologist, I never quite know what to expect. And in my body, the disease doesn't always act the way that the texts describe it. Symmetrical pattern of joint pain? Sometimes both hands, wrists, knees, hips, or feet. Often it seems to appear in my neck, or one shoulder, and moves in and out of my hands and feet. Low grade fever accompanies joint pain? Occasionally. Then again, the fevers can appear out of thin air without significant pain. Difficulty sleeping due to pain? Yes, that happens from time to time. Just as often, I can fall asleep easily on the couch while watching evening television. Morning stiffness and difficulty moving---also pretty typical. Only mine doesn't go away for at least four hours. Exercise is supposed to help. Sometimes I can dance through an hour-long fitness class. Some days at work I can barely walk from one end of the shop to the other, lift a potted plant, or turn a handle to open a faucet. I can only chalk this up to my dislike of rules, regulations, and my general disdain for being told what to do. Of course my RA is going to be a radical left-wing, borderline anarchist variety. My disease does not act like the textbooks predict that it will

Right now, I'm struggling to manage the basics---my prednisone and mtx. As my rheumatologist calls them, the "frontline" medications for severe rheumatoid arthritis. This stuff regularly kicks the crap out me, both body and mind. The fatigue, the stomach complaints, dizziness, headaches, muscle pain. The horrible metallic taste in my mouth. An overall feeling of malaise, like you have the worst case of the flu you've ever had in your life. It's no freaking wonder I'm having a tough time focusing, with all of this stuff going on. For example, I'm trying to shower and dress to go to work in the morning. I've taken my meds, had coffee and perhaps a little something to eat. I'm thinking jeez, I'm a little nauseous. I sure would like to sit down for a minute, but I can't or I'll be late. A little dizzy too...I hate taking a shower when I'm lightheaded, I'm afraid I will fall down. Maybe if I move really slowly, I won't feel so sick. I don't sit down and instead force myself to pull it together and dress, put on makeup and do my hair. I always make it to work, hopefully with a few minutes to spare. I never, ever call in sick.

If I'm sick, I don't get paid.

Which means I have to pull money from somewhere else to pay for prescriptions, copays, groceries, and all the other stuff it takes to run a household. There's very little room for error or reallocation. So I just don't get sick, although I am. All the time now. Of course, I don't mention this to my employer. I don't want to be one of those "problem" employees---viewed by management as unreliable or even worse "a weak link". I spend my working life trying to keep my illness as hidden as possible, and make every effort to appear normal. It's always funny how people will ask what I did over the weekend and these days, my best response is "nothing special". How can I possibly tell them I spent most of it sleeping or trying to accomplish simple tasks like shopping, laundry, or changing the cat boxes? How could I make them understand how exhausted I am by
performing such ordinary, everyday things? What on earth would they think?

Funny. A year ago, I had big plans. My career was finally moving ahead, after so many false starts and stalls. I was dedicated, ambitious, and driven. I was in charge of my own destiny. Today, my body dictates to me what I will be able to do. Strength, endurance, and ability are determined on a microscopic level of blood cells and synovium. RA is like being given the ultimate time-out. The coach pulls you out of a playoff game and benches you indefinitely. You might play again...or you might not. So you watch from the sidelines, loving the damn game and feeling your muscles flex in anticipation of every move. You love the game and you want so badly to play, but you stand and your knees give way, your head spins, the legs don't work and the arms feel like they weigh a thousand pounds each. It's a humbling experience to be forced to accept the fact that for the forseeable future, you are in fact, on the injured list.

And you realize that the game itself has changed. It's no longer about competition, recognition, or achievement, but about survival on the most basic level. Every choice you make affects each subsequent choice. If I don't go to bed early, I may struggle to get through the day tomorrow. If I don't take my pills before mid-afternoon, I may not be able to sleep. If I don't write myself a note, I may forget to carry my meds with me to work, which will force me to take them too late. The game has changed. I don't yet understand all of the damn rules. Doctors can tell you about medications, the course of this disease, side effects and complications. They can't tell you how to learn to manage your life in a totally different way than you have before. I guess I'll learn that as I go along. Good lord, I hope so.

Econ 101

In 2009, the US Census Bureau estimated that there were more than 50 million Americans living without health insurance. Last summer, I unexpectedly became one.
True, I am at least partly to blame for my situation. I walked away from a job with good pay and benefits, because without warning, it had become impossible for me to meet the demands of the position. At the time I was a mere thirty days from full health insurance coverage. I had no savings and I had no plan. But I believe there was a clear connection between job stress and the onset of full blown RA. Sure I had experienced some pain for several years---that mysteriously came and went from one joint to another. There were those unexplained fevers, swollen fingers and toes, eyes that felt as though they were full of sand. But not like this. My body was shutting down and I couldn't "walk it off" any longer. Perhaps I should be grateful that things unraveled as they did. I may have continued to limp from day to day on my twisted feet, icing my hands and wrists every night after work and taking leftover painkillers from the back of my medicine chest in an effort to take the edge off the pain and get just a few hours of sleep.
I consider myself fortunate. English is my first language, which made it relatively easy to search for low income health clinics on the internet and ask questions over the phone. I did not require a translator when I spoke to the NP---although one was provided for me without even asking. All I had to do was show up early in the morning, sign up, and take a number in the lottery. There were so many people in need at the clinic, the line spilled over from the lobby into the adjacent corridors. So many in fact, that there were more people than there were available appointments for that day. Mexican workers in construction gear, young mothers with dark eyed toddlers, elderly black men and women. All of us together waiting to be seen and treated for our respective injuries and illnesses. Some had to wait hours for appointments, others were sent away to another clinics or emergency rooms.  So many people in need, in the richest country in the world.
Two weeks ago, I spoke with a social worker at that clinic. She called to explain that because I was now receiving state-sanctioned insurance, I was no longer eligible to receive clinic services. She said that the clinic was overwhelmed with patients, and they were now forced to turn away anyone with even minimal insurance coverage. Of course I understood. It was the first opportunity I had in almost a year to thank her for the work that they are doing, and that I was grateful for the care that I had received from everyone there. She thanked me, saying "with all that is going on with the state of Wisconsin right now, we don't know how long we will be able to continue".
Thank god for community clinics. But they might not be around for much longer, if the Governor has his way. http://host.madison.com/ct/news/local/health_med_fit/vital_signs/article_979fd798-385c-11e0-b233-001cc4c03286.html . I work, btw. I was working full time up until this past month, when the economy hit our industry particularly hard and my hours were cut back. I take my medications and follow my rheumatologist's advice, but like it or not, my disease is advancing. My employer does not offer any type of health insurance, and will not for the foreseeable future. There are no laws in WI mandating that employers offer any type of health benefits.
Something is very, very wrong with this picture.

In medias res

I took my first dose last Friday. That was four days ago if you're counting.
And yet today I still felt like a zombie, like my limbs were dying from the inside out and my brain had blown a fuse. Some of the lights are on, but nobody's home. And there are switches that won't work, muscles that don't flex, joints that ache and grow tight with fluid. This is day four of methotrexate. And this is me, slightly better than I was yesterday or the day before that.
"Methotrexate may cause very serious side effects. Some side effects of methotrexate may cause death. You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications" (Medline Plus webpage). No shit. It's a powerful anti-rheumatic drug that is used to treat aggressive diseases such as cancer, some forms of lupus, and rheumatoid arthritis. Toxic to the liver, the lungs, kidneys, reproductive organs. Causes hair loss, metallic taste in mouth, enlarged lymph nodes, nausea, vomiting, and diarrhea. I understand the risks and the laundry list of possible side effects. And still, I willingly put this substance in my body, all six evil little pills, once per week. I am doing this so that I can have some semblance of a life worth living for a while longer.
One year ago, I was in a different place. I had just landed my dream job with one of the most prominent landscape firms in the state, a generous salary and benefit package, with a company vehicle, a new house. After several difficult post-college years, things seemed like they were looking up. The future abundant with possibilities. Six weeks into it, I began to have pain in my hands and feet.
Working sixty hours a week is hard on the body. I thought that I would get used to it. Seven weeks into the job, I was driving home at night with my hands twisted into claws. They would flex closed and no amount of will or strength could force them open. I couldn't hold my toothbrush, raise my hands to wash my hair, sleep, or put on socks. I took ibuprofen three or four at a time, four times a day. Nothing.

I walked away from the job.
And towards something I never expected. A body that betrays me daily. A brain fogged with toxic medications. A life that will probably never be the same.