Thursday, April 21, 2011

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.

Sunday, April 17, 2011


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.

Sunday, April 10, 2011

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

Wednesday, April 6, 2011


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.