This is the story of my experience with rheumatoid arthritis and chronic pain. It is only one part of the story, the dark side I might call it. It is about the path I traveled that eventually brought me to a place of surrender. Not a surrender of acceptance, but a complete exhaustion of being. I call it my defeat.
I’ve never told this story this way or so completely. It an exercise in finding room for the person who traveled this route to tell the complete story. Perhaps eventually, it will be balanced out with the triumphs and successes that are also part of the story. For now, it is a testimony to the reality of what I endured. There is always the danger of imposing the perspective of time upon a story when it’s retold, but I am hopeful the retelling will help me understand who I am now.
It’s hard to know sometimes where a story begins and where it ends. Beginnings can have a way of hiding for awhile until you realize you are in the midst of a new story. And endings can have a way of lingering and turning into new beginnings. This story, part of the story of my life, begins and ends this way. Today I stand beyond what I thought was an ending, only to realize the story is still writing itself.
January 2001:
Still newlyweds, we move into our new house. This is my third marriage, my first house, my first time moving into a place my 19 year old son will not call home with me, my first time living in Vermont so far from the place I grew up. It‘s only a 30 minute trip, but this area is new to me. I have to watch for the great gray metal garage to know it‘s time to watch for the small hill and the corner where our house sits back from the road. It is a time of great transitions, trusting and hope.
We spend that winter settling in and getting used to being a couple in our home, our first real ‘us’ space. His dog and my cats make some unspoken agreement to tolerate each other as family. I stop having to look for the metal monster of a garage. I find the bagel and coffee shop on the way to work. I learn what time the school bus comes through. We slide on our little hill and make snow angels. We shovel and plow our way to the road. We go to work and come home to each other. The snow settles around us and wraps us in a white blanket of peaceful love and contentment.
I am sure, convinced beyond doubt, that the many struggles I’ve faced in my life are left behind and I will be able to enjoy the last half of my life. I consider it good spiritual planning to get the tough stuff out of the way in first half of my life. During these days, I feel I’ve completed a circle and stepped out of it into something new. At last I can relax. I don’t have to worry about money. I have a decent car to drive. I don’t have a child to be responsible for. I have a good job, good health - all the physical necessities and stresses of daily living are taken care of. I am sure of myself, my relationship with my husband, and my life. My existence is a deep relaxing inhalation and exhalation of joy and satisfaction, and I bask in it.
I have moments I wonder what’s next in my spiritual development? Should I be doing something? Practicing something? Connecting with others? I feel the sense I am supposed to do something, but I don’t know what it is. I let those moments go, waiting to be directed, because I am more content to simply think about spirituality, and roll around in what I already know, familiar and quiet, like laying on green grass and warm earth in the summer. I don’t want to go anywhere else. My practice goes only so far as making gratitude part of my daily life.
I play casually with the great truths I feel in the core of my being. I play with bending the world to my will in small ways, uneducated magic of sorts, and sometimes I succeed. I believe I am sometimes tempting fate and wasting what I’ve learned. Still, I am ok with that. I don’t really want to hear a call or get direction. I have a faint and ungraspable sense that the next spiritual step will be a giant leap that could change my life, and I do not want to even go near the leaping point. I don’t want my life to change. I am happy right where I am and I want nothing more than to play.
When summer comes we paint the house and garage. We work together, he up high with the sprayer and big patches of house. Me with a brush on trim, porches and fences. Painting, the white picket fence, one of my favorite nostalgic associations with our house, becomes a troublesome, painstaking labor of duty. I spend a lot of time wondering why we really need that many rails in our porch railings since we have no small children. It is long hard boring work, but it is part of making the house ours and we compliment each other the way we work, him with big broad powerful efforts and me with finesse and finishing.
With all the hours and days of painting, I began to have pains in my hands and wrists. My fingers begin to get numb on and off and they tingle a lot of the time. I write this off to the work we are doing. The pain spreads to my arms and I write this off to an old familiar problem that usually occurs when I carry something heavy. The pains come and go, slowing me down many days or making me stop before I want to and while he works on. I continue to write them off as a function of my not being used to this kind of work. We finish the house, and I’m proud of what we accomplished. Red and white, freshly painted, it is a symbol to me of home and hearth made richer through the satisfaction of hard labor with someone I love.
Life goes on full of settled daily routine. In October, my son returns from Florida and lives with us for awhile. I am happy to be able to see his face, know if he’s eaten a decent meal, and to hug him. He’s busy and chasing after his life closer to town.
I continue to have problems with my hands, especially when I type a lot at work. The doctor and I talk about carpal tunnel syndrome and the damage repetitive motion can cause. I have an ergonomic assessment of my work space done. I spend my driving time shaking my hands and rubbing my fingers together trying to alleviate the tingling and numbness from holding the steering wheel. I begin to wear hand braces, or ace bandages when I need something softer against my body, to help support my wrists when I am using them.
My body starts to ache more in general. I think about how I need to start working out on a regular basis to avoid these weekend warrior aches and pains. The pains gradually worsen and I continue on, expecting they will work themselves out like most aches and pains do. The ‘old injury’ in my arms is present more than it’s not. Sleeping on these nights is difficult and I develop entirely new positions of sleeping trying to accommodate the pain caused by movements and positions of the wrong kind. I begin to move away from my husband at night to avoid the contact and pressure of his body against the painful parts of mine. I miss the comfort of sleeping in the crook of his shoulder and tucking my body in and around his, but more than that, I miss uninterrupted sleep.
By November, my legs and feet are sore and judgmental about what I ask them to do. On Thanksgiving day, amidst a gathering of family and friends, I am sitting at the head of the table in my husband’s usual spot. We are chatting, my friend Julie, her husband, my husband and I. I am trying to enjoy the conversation - I want to enjoy the conversation - but I am so distracted by the pain in my legs, I cannot participate with more than a shred of partial attention. I rub my thighs and knees below the table. I position and re-position my feet, my posture, my leg positions, over and over trying to ease the nagging pain.
A moment comes, when I can no longer concentrate on what’s being said because the pain is too demanding. It hits me like a lightening bolt that something is really wrong with me. Not carpal tunnel syndrome, at least alone. Not weekend warrior symptoms. Something is happening to my body that is making it scream and that something is not going away or getting better. This is the point I realize I am mid-stream in a story that began months earlier.
I make an appointment with my doctor and she recommends I see a rheumatologist. By the time I get my appointment, there is swelling in my hands and knuckles, my wrists, and my feet. My ankles don’t bend in the morning when I get first get up. I clomp slowly and stiffly to the bathroom each morning, waiting for the muscles to relax and start moving. I remember how my mother used to do this and how I thought she was stomping because she was lazy. I get new insight into compassion and I feel heavy with the sadness of my inability to understand what she was going through back then. I call her and tell her. She remembers and I am saddened further by that.
The new doctor’s office is small with the typical kinds of magazines most doctors’ offices have. There are also other kinds of magazines. Magazines about arthritis and magazines that must be meant for people much older than me. I feel out of place, too young to be here, but here I am. I watch as someone enters the waiting area from the inner office, moving slowly with a cane. This is not my place. In the inner office is someone who will know what to do about this. I am sure of it.
I am diagnosed with rheumatoid arthritis (RA). One of the criteria for this diagnosis is 5 or more swollen joints. The doctor counts 33 for me. I’ve never even thought about having 33 joints although I know they are there. Until now, they have been silent willing partners who graciously healed themselves from the occasional bump, scrap or bang. Now they are crying out daily and I learn there is something wrong with my autoimmune system that causes this.
The medicinal options for treating this condition are scary - things like cortico-steroids (???) and a drug that can affect your vision. None of them acts quickly, and you have to start with a low dose and increase it over time, so you have to take them for awhile to see any effects, if you will see effects. There is no one option that works for everyone or is tolerated well by everyone. Feeling uncomfortable with the options, I opt for ibuprofen and time.
January 2002:
I feel there is a piece of information missing, which if I could find it, would help to cure the RA - something I eat or drink, bad posture, alcohol, something else wrong with my body. I watch for associations with what I am doing and what happens with the pain. No patterns appear to me, but the sense that I am missing something remains. I start to consider everything happening in my body to be potentially related. When I see a doctor I tell everything: headaches, times of day or activities that make it worse or better, what I ate before a flare up, what my emotional condition is. I examine myself and my life under a microscope looking for that missing piece.
My next visit with the rheumatologist is in 3 months. In that course of time, the condition worsens, and I begin to understand the meaning of good days and bad days. I take massive amounts of ibuprofen daily. Winter is horrible. I cannot put on my coat or boots or gloves without pain. I can’t zip or unzip my coat and I have to ask my husband, my son, my co-workers to do this for me. Cleaning snow off the car is torturous. Driving is difficult and painful especially at the end of the day.
My hands don’t work right and I have no strength for the smallest of tasks. I cannot turn doorknobs, pick up my pocket book, open jars, open cereal boxes, or open bags of frozen vegetables. I can’t raise my arms or reach for anything without a reactive jerk back from the shooting pain the movement causes. And still I must find ways to do these things because they are required. Often the way is simply enduring the pain, and repeating efforts until I am able to accomplish the task at hand. I begin to collect, and be given, special gadgets and tools to help make these tasks easier. These are the kinds of tools I saw in the magazines at the doctor’s office. These tools meant for others are now a necessary part of my life.
By the time my next visit rolls around, I’ve had enough and I want to try one of the medicines. I opt for the cortico-steroid (???) over the one that might impact my eyes. I bear through the time it takes to know if this drug will work. I have fewer and fewer good days now. Pain is a daily, hourly, by the minute part of my existence. I have to adjust my life around this ailment. Even walking is a painful experience most of the time. My body learns to move in different ways, always tense in the anticipation of pain. Nothing seems to help.
I stop doing most of the things I love to do because I can’t physically take it or I’m just to tired or too much in pain. My life becomes getting through the day at work and collapsing on the couch or bed when I get home. I don’t sleep well and add a muscle relaxant to my routine. I am exhausted and drained almost all of the time. I sleep even farther away from my husband, or get up at night to try and find a comfortable position on the couch sitting up and with the distraction of TV.
I now have multiple sets of hand and wrist braces since no one option seems to work consistently: a clean set I leave at work, a dirty set to work with, and several alternative kinds of braces and bandages . I start to even wear them at night sometimes when the pain in my wrists makes any movement painful. Sometimes all I can do is rest my hands in a comfortable position because my skin becomes super sensitive and I cannot stand to have them wrapped up.
My husband takes on most of the chores because I just can’t do them. I am constantly needing his help with a million small tasks I never gave any thought to before. There I times I simply cannot do something until someone is there to help me or do it for me. I become dependent and I hate it.
The steroid doesn’t work and I go back to ibuprofen still hesitant about the other drug because my eyes work if the rest of my body does not and I don‘t want to risk them too. I continue to feel I could get rid of this if I could just find the source, find the thing I am eating or drinking, find some thing that is causing this. I learn to be dependent on people I don’t know. I have to ask to have groceries bagged lighter, to have heavy items put into my trunk, and even sometimes put into my cart inside the store. This is hard for me because I don‘t look sick and I wonder if these people think I am just lazy.
Spring comes and I am glad to be relieved of coats, boots and gloves. I am self-conscious of how awkwardly I move. It hurts to do almost everything. I find that if I’m in hot water my body doesn’t hurt so much and I start to take a lot of baths. I start swimming in the arthritis class at the gym hoping the exercise will help, loosening tight muscles and building strength to improve my endurance. I am the only ’young’ person in the class and the hours are mid-morning and afternoon. I have to take time off from work to go to them. I wonder if there younger people would attend if the classes were at different hours of the day. I cannot be the only ’young’ person with these issues who can benefit from the water exercises.
I start to notice how other people move. I recognize the stilted walks, the slow movements, careful steps, and the way bodies move to avoid or compensate for pain. As I start to recognize these movements in others, I notice people I know who move this way. I ask them. We talk, share experiences some. People I don’t know, people I stand with in line at the grocery store, ask me about the wrist guards - ask what’s wrong - and tell me about similar conditions they have.
Some of these people I would never have guessed were in pain. I begin to think there are a lot more people out there dealing with different kinds of pain then I ever thought. I begin to wonder why I never noticed before and why it’s so hidden. I start to wonder if I’ve been taught not show my pain, that I am supposed to be strong, that I’m supposed to be independent. I still hate being restricted, but I decide not to try and hide it anymore.
I ask people I don’t know to open doors, move things out of my way, or pick things up for me. In my car at a convenience store, I am almost in tears as I realize I can’t open my twist cap iced tea. I am so thirsty and here I am with these damn hands that can’t do anything with this damn dependence on other people. I finally get out of the car and walk over to a man sitting in his truck and ask him to open it for me. Learning to ask for help with so much is difficult, but now a necessity. Asking for and receiving help enables me to do some things I wouldn’t be able to do otherwise. Asking people to walk more slowly, get things off from store shelves for me, come to my desk at work instead of me going to theirs, all these requests make life more manageable. I can’t think of one time I was turned down by someone I asked to help me.
There are good times, life goes on, people are patient and understanding for the most part. I find ways to cope. I learn to say no. I learn my limitations and I work with them. I do all the right things, if there is such a thing. I put one foot in front of the other and take another painful step, face another emotional struggle, reach out to another person. But these wonderful pieces of my life are over-shadowed and accompanied by pain.
Responsibilities combat with personal preferences and desires for my time. When I do have a good day I am torn between doing something enjoyable and helping with chores as I can. I start to feel I am ineffective in both arenas. I learn to accept that I must slow down my life to accommodate what’s happening in my body. Anything involving walking happens slowly, and I have to stop to rest, sit, take the weight off my feet.
I can visualize my pain now, which appears to me as a squid-like thing, black and thick with tentacles or strings spread out, weaved through, and grapple-hooked into the muscle, bone and energy of my ankle. This is the only place I see this ‘thing’, but it is present in many parts of my body. The only safe spots are the chest of my truck and my head, excluding my neck. I learn to be thankful for these pain free spots, for good moments as well as good days, for rare fitful sleep, for other people’s patience, and for strong arms and hands that are not mine. I make my life smaller and smaller as the RA becomes a bigger and bigger part of my existence.
There is nothing gracefully accepting about my attitudes and behaviors in the face of these difficulties. I fight it. I resent it. I hate it. I feel like I am shrinking and sinking, sucked down by a thing I cannot control, cannot rationalize, and do not want to accept. I am exhausted, trying and trying to keep going, to create balance, to be accepting, to find ways to cope, to take care of responsibilities and myself. And I do, but I am so tired and so overwhelmed and so sad to see what is happening to my life.
January 2003:
Through another winter and different drug, the one that could affect my eyes, I plod on. I have special hand and wrist guards made that are molded to my hands. I go to see a naturopath doctor. I go to my chiropractor. I start physical therapy. I have to see the eye doctor now every 3 months to check my eyes. I have a team of doctors and I still want to believe that someone, one of them, can help me, but things continue to gradually worsen. I start to feel hopeless that anything will help and helpless in the face of it.
My mother suggests dietary changes that helped with her RA, but I balk at the idea of making changes. She suggests other natural remedies and supplements, but I am tied to the path I am on, unable to cope with more change. I am resistant and protective of what energy I have left, despite being desperate for relief, for sleep, for rest, for physical and emotional peace.
Over the summer, I grumble about the young kids who work at the stores and have no idea about what it’s like not to be young and healthy - who think nothing of everything they are so easily able to do. I used to be them. I want to be them. I begin to seriously complain about the things I can’t do, things I can’t reach, things I can’t turn, things I have to give up. I start complaining about how my husband doesn’t understand, how he doesn’t think about what it’s like to be me, how he doesn’t have to think about pain every minute of every day. Secretly I envy his strength and his health. I am angry to have had mine take away from me. I rage outwardly against this great injustice but in ways that accomplish nothing - crying and screaming about being understood, about being rail, about being cheated.
We have to buy a new stove, but almost every model we look at has controls on the back of the stove for child safety reasons. I can’t reach that far without a jerking pain in my arms. I think how that’s not safe either. I find more and more products made this way - without consideration for people who do not have strength or have great pain. I cannot open a cereal box or bag, open a can, reach into the washing machine, cut steak, or even hold my toothbrush some days. I collect more gadgets to help with this, but the reality of not being able to do so many basic things and manufacturers thinking little of it sticks in my mind.
I ask the doctor for something to help me sleep. I don’t have trouble falling asleep, but staying asleep because of pain. She gives me a muscle relaxant, that helps a little, but not a lot. I have a cane now, at least it has a purple geometric pattern on it. It helps me walking, but the pressure on my hands is painful. I use it anyhow. I get crutches to put the weight into my armpits instead of my hands. These also help, but I never get very handy with them and I feel very conspicuous when I use them. The crutches prompt more questions than the cane, and I try to explain without giving too much information or getting too tired of talking about it.
I can no longer wear my shoes and have to search high and low for something that comes close to feeling comfortable. I love my ‘old’ shoes and this is a difficult transition for me, but a decidedly practical and helpful choice. It takes me hours to find workable shoes. They are ugly, wide, practical and matronly looking. But they are a godsend when I find them.
I am learning how much of my perspective is relative. Levels of pain I used to think of as bad, are good days now. On the doctor’s pain scale of 1 to 10 with the emotion faces beside each number, I have moved from a 3 to a 7. A 5 is a good day. Things take on new roles. Physical comfort becomes primary, the couch becomes a second home, TV a companion. Dependence on others enters a whole new realm.
I have days I can barely walk to my car after work and the drive home is excruciating. I stop bringing in my own things from the car many days, and ask my husband to get them for me. I have days I call him from my car in our driveway because I cannot make it from the car to the house by myself. Sometimes he gives me an arm, sometimes he carries me. I have days I call him from the bathtub, unable to get out myself. He dries me off, helps me dress, helps putting on and taking off shoes. He does almost all of the cooking and cleaning and outside work. I feel like an invalid, old before my time. I am thankful he and others are there to help me, but I am so angry to be in this situation.
In late summer, I finally acknowledge I am losing my grip and need to do something. I have been pushed beyond my ability to cope for some time now, and I cannot find solid ground. I have become irrational, angry, attacking, bitter, and hopeless. I can see what I’ve become, this reduced version of myself in this reduced version of my life. I know I have become lost and I need to stop and figure out where I am. I put myself first, above everyone else, in spite of what anyone else thinks. I start to sort through where I am and who I’ve become.
I try to let go of guilt, to be more accepting, to look for more of the good things. I try harder to recreate balance, make some room for myself. I let go of someone of my expectations for myself. I try to be more graciously dependent when I need to. I try to step away from some of the heat of the emotional turmoil, but I let myself feel what I feel and try not to judge it.
In early fall, my doctor finds a tender spot in my abdomen during a routine pelvic exam. She sends me to a gynecologist, and an ultra-sound finds a cyst. I am surprised to hear I need surgery despite my doctor’s forewarning it would be likely. I recognize I was in some kind of denial right up to the moment, the gynecologist was discussing the actual surgery with me, and what kind of incision she thought would be best.
October 1, 2003 I have surgery to remove the cyst. They find something unexpected, a luscious tumor spread throughout my abdominal cavity. They remove as much of it as they can, along with my gall bladder, and do a complete hysterectomy. They cannot tell me if it is cancerous, or even what it is. I am terrified I am going to die, that I’m not ready to die, that I don’t know how to die. I am overcome with feelings of loss, fear, anxiety, and dread.
A new story begins in the middle of the one I am already in. But the beginning of this new story, which I will tell, also contains the end of the first story, which I will tell first.
For 2 or 3 weeks after my surgery I have little RA type pain. I am on pain meds and home to recover, not moving much, so I am unsure how long it will last. Despite the surgery recovery pains, I am relieved and feeling more physically normal than I have in a very long time.
The RA pains come back when I start to move and do more normal kinds of activities. They are even worse before. This time they involve swelling in my forearms down to my hands and from my knees through my feet. I am in severe pain even into night after night after night. I used to have a ‘better’ time in the morning and worsen during the day, but this seems relentless and unforgiving. By early December, it is so bad I seriously consider quitting my job and applying for disability. I am a captive of constant pain.
I am an observer of Christmas, unable to participate in decorating, Christmas shopping, or visits with friends. I have no holiday spirit and no energy to even think about it. I cannot pick up our grandchildren because I am afraid I will drop them even if they are sitting on my lap. It is all I can do to get to work, survive the day, and collapse when I get home.
January 2004:
I sit, one night, on our bed, alone, exhausted, and totally, absolutely defeated. I have nothing left - no reserves, no energy, no desire, no fight, no light to reach for. I understand in that moment how someone could choose to end their life. This is not a decision I would make myself, but in that moment, I see my life, my will, my being engulfed and overshadowed by pain and illness. It is not a life I want. There are still good things present in my life, but the pain is so overwhelming that they seemed dim and faded.
I start taking pain medication and am thankful for the numbness it brings, and the edge it takes off from the physical pain and the emotional rawness. I understand how people can become addicted to drugs. I don‘t have drugs that are physically addictive, but emotionally, I want to stay in this little bit of shelter. The medication becomes like a friend.
At my next rheumatologist appointment, she finds only 3 swollen joints. It is swelling in my muscles causing the pain. Blood work determines my thyroid is under active. It had been ok at the time of surgery, but now was not.
As I work my way through increasing levels of thyroid medicine, the muscle swelling starts to go down. The changes in swelling and pain so parallel the changes in dose, I begin to have hope again that the RA might go away.
Over the next 5 months, the pain gradually improves, lessening and coming and going rather than being a constant. By June, the swelling is gone from my hands and legs, and I feel physically normal for the first time in almost 3 years. I feel human again.
I am able to ride my motorcycle without pain, and for longer periods of time. I get out my ‘real’ shoes that I’ve missed so much. I am able to help with chores, and errands. I can brush my teeth, open jars, crush boxes, carry bags. Things like emptying the dishwasher and doing laundry feel like a dance of movement, strength, and grace.
I don’t know why things changed. Perhaps the tumor caused the RA. Perhaps, the physical trauma of surgery kicked started my bodily systems. Perhaps my thyroid had been bouncing around for some time. Perhaps it was a miracle. I don’t know, and I’m happy not to feel the need to know. I am content to have my body back from pain. I feel alive and gratefully so.
Free from physical pain, I leave this story and must pick up the next where I left off at the very beginning of it.
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