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.

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