LUPUS: MORE THAN JUST JOINT PAIN

The tests results are in…the ANA is positive, as well as the SM. This is the first glimpse a doctor has of a lupus patient. These numbers are an important element in solving the puzzle of a disease that is often called “The Great Imitator.”  Once the lupus diagnosis is made, it comes down to the course of action. There are two regimented allies fighting this war. The first is the patient, who was in this battle long before she realized she had to fight. The second are the doctors, who are trained to be stoic warriors and watch the ever changing indicators. Unlike RA, the lupus patient has many specialists monitoring different areas of her body.

 As a patient, I became overwhelmed by all the numbers. I turned my brain off, or was it actually brain fog, getting in the way? My world was changed drastically five years ago, and I will never be fully the same. I know I should study the test results, write them down, learn all their meanings. But I don’t know how or where to begin. On the other hand, how do I describe what lupus feels like to my doctors? They are as perplexed by my daily struggles as I am by all their data. With this article, I will attempt to try and come close to that description.

 In reality, lupus has a different feeling every day. Sometimes it is joint pain and stiffness. Some days I am confused by simple tasks. Other times I can feel the heavy, pulsating beat of my heart, causing me to be dizzy, exhausted, and worried. My stomach is always upset. My digestive system is in a constant state of confusion. My skin itches and tingles every day, all day long. Sometimes I awake in streaks of blood from scratching in my sleep. And on really bad days, I feel all of these things at the same time. I am a person with a mild case of lupus, forever wondering what it will be like for me when it becomes severe.

In a sentence…my body has forgotten how to mechanically run on its own. Each individual part is running independently of the others, in a type of mutiny. As the patient, I try to do my part by learning to adjust and following my doctor’s advice, although I have to say, a healthy amount of denial of my fate has helped me live my life to the fullest.

This journey for me actually started at age eight with Juvenile Arthritis. Thirty- seven years later and three more autoimmune diseases added to the mix, I have what is now called Connective Tissue Disease, with Lupus SLE as the front runner. Lupus SLE can give one unexpected “gifts” throughout its duration that go far beyond joint pain. Over the past five years, I have spent time in the hospital for heart- related issues. The first time was when, during a Rituxan infusion, my heart rate dropped to 38bpm. The second time was when five blood clots were found in my leg. Occasionally, I have difficulty breathing. It is almost as if my lungs can’t fill to capacity. In my head, I ask…”Is it my heart? Do I have a clot?” Those are often very long nights. I ride it out until it passes. After all, if I went to the hospital every time I felt something such as this…I would have to eventually pay them rent.

Along with the tangible comes the intangible, the parts of this disease that cannot be measured in a blood test, yet are very much a part of our lives. I am talking about the fatigue. It is debilitating. Do you remember the required obstacle course you were forced to navigate in gym class? Now imagine every day with an obstacle course laid out before you in the form of daily tasks. Only this time, when you finish it, you are required to repeat it again and again until you go to sleep that night. That is the type of fatigue I am talking about.  It is when every nerve ending in your body is pulsating with electrical charges, because it has worked overtime all day. And as ironic as it sounds, for some reason when it is time to retire for the night, your brain has disconnected the messages to your body that says it is time to sleep.

Being an artist, lupus for me is defined by visual metaphors, a grouping of pictures that are forever playing in my head. But two are more prominent than others, the first being “the wolf,” the other being a Jack-in-the-Box. Lupus patients often refer to this disease as “The Wolf” because of its name. But it is also a perfect visual of the characteristics that this disease holds. As with Red Riding Hood, you are never completely out of the woods and safe. Everyday issues that most people have to address become magnified for us. With every slurred word…with every twinge of pain…with every rapid or slowed heart rate or indigestion, we wonder…is that the wolf lurking and licking at my heels? With the complexities of a disease that lives in all areas of my body, it is helpful for me to give it a face. But along with that face is also a sound, the sound of a Jack-in-the-Box: that constant, slow turning of the handle and that awful tune playing in your head. Even when you are receiving treatment and you start to feel better, your brain never let’s go of the thought that the Jack-in-the-Box handle is still slowly turning, and eventually the wolf, dressed like a clown, will pop up again.

 As patients, most of us don’t understand how the body functions. We never studied it to a full extent, and therefore it is a mystery to us. Every night when we lay our heads down to sleep, it is as if we are put adrift on a raft, uncertain of where we will be when we wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good we feel. There is a constant state of uneasiness, that you realize is now your constant companion. It is the acquaintance you had in school that you tolerated, who was always the first to point out dismal news. Whenever you bumped into him in the hallway, you wished you hadn’t…but his words forever penetrate your mind…”Is this the day of the deadline?” With lupus SLE, this is how I feel every day.

 Lupus DLE is a different story. It is a visual that does not have to be imagined. It is staring back at me in the mirror every morning.  Although I know in my head it will be the Lupus SLE that will get me in the end, it is the Lupus DLE that is most disturbing in my life. It was the most physically altering of all my autoimmune diseases. It is the only one that never rests, and it never lets me go into denial. Its image is on every reflective surface and in every stranger’s eyes.

I used to be beautiful; I had deep Mediterranean skin with black hair, so that even at the age of 40, people often thought I was 30. Since I was a child, I could never be out in the sun. If I were, I would become ill and break out in painful red bumps. It was a joke in my family that Debra didn’t tan, she “rashed.”

 The first thing I noticed was that I had lost five shades of pigment and went from a Mediterranean olive complexion to a ruddy Irish one. Slowly after that, I began to have rapid hair loss. My eyebrows became nonexistent. I prayed my eyelashes wouldn’t fall out. The lesions started out as a small area on my face that itched. Isolated, it feels like tiny little bugs are feverishly eating away at me from the inside. For several years before getting Benalysta infusions, the lesions were painful, open wounds. As they went through the process of discoid stages, a black disc shape would form on them…sometimes it stopped there…other times, the process would repeat again and again; in the end, it always scarred.  The DLE hit me so hard and so fast, I was convinced that in a past life, I had been a beauty queen who had been  mean to ugly women…Karma is a bitch, and now I am paying the price. After awhile, I began to feel like a leper and wished there were a colony somewhere, where I could reside.

It is difficult to go from a person who was considered to have beautiful skin to a victim of discoid. When it first reared its ugly head, I avoided mirrors and reflective surfaces .But even still, it was the strangers I would meet who would remind me that I am a freak. They often stared as they walked by, leaving me feeling exposed. I once had a kind-hearted Jewish lady tell me, “Come here, sweetheart,” as she removed a hanky from her purse, “You have schmootz on your face.”  She had a hold of me before I could protest and was rubbing vigorously. The pain was unbearable.

I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the sorrow of the abandoned child lives on the surface, at the back of my throat, as a constant reminder of just how vulnerable I am. My world is different from everyone else’s. I am never on solid ground; it is always shifting beneath my feet. There is no cure for lupus. If the numbers become good, it doesn’t mean I am cured or had a misdiagnosis…it just means the wolf is caged, for only a brief period of time, and he will be back.

A GLIMPSE INTO A WORLD I ONCE WALKED

February brings to mind many things in my life. There is of course, Valentine’s Day and a time to reflect on love. But I want to talk about something more primitive then love. I want to talk about the power of touch.

Several years ago, when I came down with lupus, one of the first symptoms I had was a painful sensation in all the nerve endings of my body. It started at my feet and slowly worked its way systemically up, until every part of me, from my toes to the top of my scalp felt as if it were being stuck with small needles. I was convinced that somewhere in this vast world, was a replica doll of me being held in the hand of some unfortunate soul I had wronged. My body was calling out in the darkness of night for me to listen. Its warnings were a beacon of anguish for the revolution that was about to begin. It confused me. I didn’t have a diagnosis yet and therefore was confused by its revolt. The simple act of wearing clothing was a painful endeavor worthy of any medieval torture device known to man. Kissing was out of the question, and hugging was merely a lost memory. My family didn’t quite know how to handle this. The familiar exchange of a pat on the arm brought guilt to the faces of my loved ones and only pained me more. The tiny touch of my students even became snuffed from my daily living.

As with most things we take for granted, I didn’t realize how important it was to be touched, until I no longer had it in my life. Isolated on an island that was inhabited by the world of tenderness, I was forced to watch the lives of the people I love unfold before me. I gazed upon them as if I were watching from a movie screen, no longer the participant. I learned to sit in a chair wearing lose clothing, careful to only let the furniture touch the most conservative outer edges of my shell. The simple effect of a breeze would send shock waves that would travel the length of my arms and rest at the point on which it would slide off the edge of my skin. To express my love for my family, I would touch the tip of my index finger to theirs in a primitive wordless world of communication.

Skin is the largest sensory organ the human body has. Touch is the first sensory we develop as infants it is the one that stays with us until death…long after we lose our sense of hearing, sight, and smell. “Touch” refers to four different sensory descriptions: pressure, pain, temperature, and muscle movement. It is believed that without touch, some species can die. It has a power even we don’t understand. Ancient medicine relied on The Laying of Hands in the form of healing. It is something that is still widely used today. When it was removed from my life, I felt wilted.

This new way of living made me think of the thousands of people who walk this earth without touch; the ones who live in isolation. I have always been an affectionate person…this more than anything was killing me. It was one of the worst tricks the wolf could play on me. I found myself becoming solemn and quiet. My body gestures completely changed. I subconsciously stepped back from close proximity of those around me. I no longer bent down to be eye level with my students who were young. I lived in an out of bounds world. I was hopeful that with the new meds this constant agony of sensitivity would be relieved. I was afraid it had changed me forever. Could the lack of touch, even for only a few months, be enough to alter ones personality? Then four months later I got my answer. I turned to the feel of a tiny tap on my shoulder.  Looking down into the big brown eyes of a five year old she gestured for me to get closer. Bending down so as to hear her tiny voice she whispered bye Debra as she put her arms around my neck and bid me farewell at the end of her class. I hugged her back feeling the love in my heart. As I watched her leave the room, I thought, not only am I back….but I had never left.

WELL HELLO 2012!

So it begins, a   new year. I love New Years day. Not because of the festivities the night before, or the meal to be served at noon, or even the parade and fanfare you see on TV. I like New Years because it is in essence…a redo.

I start every New Year’s Day with organization. It is basically my spring cleaning. But unlike most it isn’t just my house I am purging. It is all the excess baggage I seemed to have collected over the past year. I am a person that likes to throw things out, get rid of it…good riddance. It was one of the few lessons my mother taught me. “Debra, don’t weigh yourself down with all that stuff.”  No truer words were ever spoken. My mother, of course, was referring to my room as a teenager. Today, it has so much more meaning.

“STUFF” it is an interesting word that’s meaning varies from person to person. Everyone has their own “stuff” to contend with. It could be physical clutter or emotional clutter. For some it is both. Because it is easier to remove the physical clutter than it is to purge the emotional, I let the pure act of throwing things away guide me to the final goal of ridding my life of all my unwanted misgivings. With every item I toss…random office papers…clothes I haven’t worn in a year…I think of them as having a corresponding emotional item. Perhaps past issues of your favorite magazines could also symbolize issues from the written pages of your own life that is finally time to let go of. A worn out pair of jeans may be a symbolic connection to a relationship that has been wearing you down. An old pair of running shoes could be the equivalent representation of a task you have been trying to accomplish that seems to go nowhere. Outdated spices that no longer have their strength are suddenly the thing in your life you once desired that has lost its vigor and therefore its importance. With every toss of an item a space is reserved for new concentration and other goals. By the end of the day you are tired yet renewed and ready for the New Year.

Every Christmas my family gives me a new Moleskin brand notebook. These are pocket size sketch books found in an art supply store. In this Moleskin, I can draw, make lists, and reflect. Sometimes I will write a sentence that comes to me at the most unexpected times, and refer back to it later in something I am writing. On New years I take this book and first write the date and then I record all the things I would like to accomplish in the coming year. I find myself revising it through the year and on December 31^st I go back and review it. I laugh at the things I felt I should have done and I sit fulfilled at the items I did accomplish. I revisit the drawings and phrases I have written and see myself again for the first time as an observer rather than a self criticizing being.   At the end of my New Year’s Day, with a clean slate, I am ready to begin this process again.

Some may call these New Year’s resolutions. I have never liked that word. To resolve to do something sounds to me like finally agreeing to do a difficult task, in which you dread. In the end when you don’t “loose those ten ponds” or “paint those ten paintings” all you’ve accomplished is a feeling of failure. I ask you, how can that be good for anyone? On my list for 2011 was to read from cover to cover, “War and Peace” I got to page 100 and decided to put it down. Then I picked up “Life on the Mississippi” by Mark Twain, and read it for the fifth time. Upon its completion I set it on the table next to me and picked up my netbook computer and I began to write. In the end my failure to read “War and Peace” was an accomplishment in other ways. This is how I wish to live my life. To take the bumps in the road of unaccomplished deeds, and search a way to turn it around. I wasn’t always this way. It took a conscious decision, on my part, to take control of my own attitude and therefore destiny. It was actually an item on my list from 2007; one year after I came down with lupus.

So, how do you achieve this? It takes practice to accomplish this mission of “turning things around.” First you must acknowledge the unfinished task; and then ask yourself why? Glance back at the time in your life when you were supposed to have achieved this goal and really think about what stopped you. Then look at what you did instead. Once you have done all that…find an item in your life not worth keeping, name it that unfinished task, and toss it in the trash. The weight that will be lifted will make you lighter both in heart and spirit.

YEAR END REFLECTIONS

During the entire month of November, I heard people expressing how much they were thankful for. Every day they posted what that day’s worth was. They described the usual: family, friends, and in some instances health or fractions of good health which is often the case for a lupus patient. I read each one of these acclamations and wondered, “Is everyone really internalizing these thoughts? Are they mere lists that one feels obligated to write?” Certainly it is a wonderful gesture, but what is the weight of its worth. This got me to thinking about accomplishing grateful endeavors. How can you be grateful for your life if you have no task in which to prove it?  Or even better, what process have you gone through to try and accomplish a purpose?

Over the years, I have learned that words are often just words. I have also come to realize that to internalize a thought process means so much more. It is the difference between the “I wills” versus the “I haves”. Sometimes we do not reach our destined goals, yet the road that has led us there, if traveled diligently, has brought us to other destinations. It has landed us on the shores of our souls.

People often ask me how I am able to accomplish so much, and yet fight four autoimmune diseases. My first response has always been, because I am afraid. The thought of slowing down and stopping my world in its tracks scares me more than anything. In my mind, when that day comes, that’s when they should dig the hole.  I respect the wolf. I take my meds and listen to my body. Yet at the same time, ignore what the wolf believes I can no longer do. With this stubbornness I am much better off. Being a visual person, I always see myself as looking over my shoulder, and when the wolf is not looking at me, I run like hell to my next destination. Once I get there I laugh at him. This too, I see visually as me holding my belly and pointing.  Being able to visualize yourself as an individual who can accomplish many things is half the battle. Denial?...maybe. Stupidity?...sometimes. Rewarding?...always.

 This is not a new way of thinking for me. Having Rheumatoid Arthritis since I was a child, I had learned early on that life isn’t always easy. I have always been a project person. It is through these projects I learned the art of distraction. When I was 8 years old I saved bird feathers for two years in hopes of one day making wings to fly. My mother was appalled when she found them in my closet stuffed in a box. I had my first “business” when I was in high school. I reproduced album covers on canvas with oil paint for a local “head shop.” By the time I was 21 and living overseas on an army base I painted tasteful nudes for GI’s.  At the age of 25 I owned a photography restoration lab. This was before computers, when everything was done on the negative by hand. At the age of 33 I opened an art school. It is where my heart is today, eighteen years later. So when the wolf knocked at my door, I wasn’t about to bow down to him. It isn’t in my nature.

Seven years ago, before the wolf, I set out to give my daughter a graduation gift for her high school achievements. I could have given her the usual, a car or jewelry. But I was so proud of her; I wanted to give her my heart. On Thanksgiving weekend 2004, I started writing my memoir. She had not known the stories of my past. We did not have family to gather around a holiday table to relate them. In this way she was deprived. I wanted to give her the gift of my history and therefore hers as well. I finished the project with a 500 page chronicle of my life. I have led a very interesting life. I have traveled and lived abroad for several years. Alone in the world at a very young age I had experienced an epic existence of struggles and accomplishments, with often hilarious paths along the way. The point I was making for her is that you never grow up…one just keeps on growing, and it is the journey that counts more.  It is ok to be fearful, stupid and make mistakes along the way, because life is an adventure and this is how you learn.  After I completed this project, I felt it had done its job and set it aside. With the encouragement of some friends who had read it, this year I turned it into a novel. I added some characters and made it a complete story; soon it will be published. The process it took to complete this task was the most rewarding in my life thus far. The feeling it gave me, healed me. It was such a wonderful experience it drove me to want to tell everyone if you believe you can do something then you can, but arriving is not the goal.  It was not the finished book that was my reward, but the journey on which it took me.

So I ask you? What can you do today that you didn’t think you could because of illness or adversity? It doesn’t have to be a great feat. Small accomplishments are equally rewarding. With ever little stride that is taken you will find larger steps to be easily obtained. Sometimes a daunting endeavor is actually a series of smaller obstacles that are effortlessly hurtled. With my book, I chose to just write one chapter at a time. Every completed chapter gave me strength. Although I felt the prize would be its completion, it in fact was its process that gave me the most reward. As in C.P. Cavafy’s poem, Ithaca, which recounts a journey through many adventures that finally leads to the arrival in the harbor of Ithaca, the poet indicates that one must not rush ashore to claim your prize to find your treasure. The treasure is your journey and it is yours already. The best part of this type of thinking is the reward of self that one receives. Your life will seem to have the worth of your grateful yearnings. It drives you to want more. For me, the collected feathers that were never fashioned into wings; actually were. They began my flight that brought me here on this voyage today.

http://ninaalvarez.net/2007/05/03/poem-of-the-day-49/

Benlysta

It is 9 am November1, 2011. I am at the Brigham  and Women’s Hospital in Boston. I am getting my monthly Benlysta infusion. Benlysta is the first lupus drug approved in over 50 years. I am one of the fortunate patients that is getting it.  I am grateful for this drug because of how much it has given back to me. I had noticed the positive effects of it almost from the start.

The first infusion I had was a few days after July 4^th…Independence Day…it seemed so appropriate. To me this drug was a promise of a new and freeing life.

It has been a little over five years since I have been bitten by the wolf. In that time I have experienced a lot of trials and tribulations.  After the first 3 weeks of being inflicted, I was certain I was going to have a short life, today with the help of this new drug, I feel I have a chance.

Lupus affects everyone so differently. It is a mystery that even the top researchers and doctors can’t seem to figure out.  I am reminded of the day on an online support group when a mother wrote into say her 9yr old son was in intensive care. He was just diagnosed and she knew nothing about this disease. Typing from her lap top in his hospital room, she was desperate and wanted to talk to someone…anyone who had been through this. She wanted to be reassured that he was going to be ok. We all responded with positive thoughts and prayers and the encouragement from some that they had had it for 20+ years and have it under control.  We checked in on the thread daily. We asked how he was…after a week we received a response…her son was dead. It humbled us all. For those that were old timers…it wasn’t a surprise. For us new timers it was a wake up call to never take anything for granted again. We can joke about the wolf openly…yet we all know he commands respect.

 Five years later, what this new drug has done for me is to fight back in a battle that has had out dated ammunition and arms. It has surprised and stopped the wolf in his tracks almost from the first infusion.  Five years ago I had a walker…on good days a cane. I was bruised from head to toe and my feet and hands were twice their normal size. Traditional treatments of steroids, Plaquenil and Methotrexate got me under control. The swelling went down the bruising stopped and I could walk…although with a limp. Some may have been satisfied with that and lived their life accordingly. Not me. I wanted more. But more importantly than wanting more for me, I wanted more for all lupus patients. For those who were worse off than I ever was. That is why when I found out about this new drug, I wanted to be a part of it. Benlysta is not for everyone. It doesn’t have the same results for severe Lupus. Believe it or not despite my condition I was still considered a mild case.  I on the other hand was the perfect candidate for this treatment and after reading the findings knew it. I not only had SLE (systemic lupus erythematosus) but also DLE (discoid lupus erythematosus) I approached my doctor and he confirmed my candidacy.  I was one of two patients he had that fit the criteria and the other one was looking more and more like he wasn’t. In my mind I was the only one to make the stand…to fight for the need. I asked my doctor, “If no one took this drug what would happen to the funding?” He said, “The funding would slow down drastically.” I didn’t need any time to think about it. I immediately said, “Ok, sign me up! Even if it does nothing, it is a way for them to see that.”

Five months later here is what I have experienced. First of all I no longer have joint pain. This is something I have had since the age of eight when I was diagnosed with Juvenile Arthritis.  Getting up in the mornings had always been a struggle for me since childhood. My hips and knees would often make cracking noises as if I were slamming two china plates together. Many mornings I would lose my footing and fall on the floor or crash into something in the room. Along with this lack of joint pain I now no longer limp. Can you imagine after all these years being able to have good and graceful posture?  I used to be very athletic when I was younger I rode my bike a lot; sometimes sixty miles a day. This was to combat the possibility of damaged joints by building the surrounding muscles. When the wolf bit me; that had to go.  Today because of Benlysta, I can ride my bike again.

When the wolf hit I found driving to be a challenge.  My perceptions were off. I hit telephone poles while backing up. I would also get confused as to where I was, even in the town I grew up. My strength to shift the car was so weak that I often ground the gears.  My family sat me down and decided that for everyone’s safety, not just mine, it was best I stop driving. In my heart I knew they were right, so I did.

Today thanks to Benlysta I am driving again. My brain fog is gone. My reaction time is back .and I have not misjudged where the car is when parking. And I might add I am driving a fifteen passenger van!

The last thing that is very noticeable about the benefits of Benlysta is my rashes. I also suffer from discoid and have approximately five different identified rashes on my body. My nickname among my Lupus friends was always Debra Itchy Highberger, because I was plagued with it the worst. Well I am here to say the rashes have reduced by 40%. The ones on my arms and chest that were always so torturous and inflamed are now just a quiet remnant. The malar rash on my face is almost gone…some days it isn’t even there at all. The discoid seems less active although so far the scars are still noticeable. My hair seems to be growing back as well, and for the first time in my life I am seeing hair on my legs.

All of this tells me that the quality of my life has improved greatly.  I am much more active and seem to be slightly less sun sensitive. I can work more hours and no longer need a nap every day. I am now back as a member of society.  I know this drug is not for everyone, but for me, it has been a life saver. It is an expensive drug. The average cost when I last checked was just under $40,000 per year. I have insurance, thank goodness, that pays for it. I worry about those who don’t.

But more than that, I am concerned about my friends in the UK that are not able to have the opportunity to even try this drug. According to the NICE (National Institute for Health and Clinical Excellence) the cost effectiveness of this drug does not make it worth it. In other words many in the UK feel this means “a lupus patient will eventually die of this disease so why prolong the inevitable at such an expense.” As a person who has been without health care in the past with meds alone costing well over $2000 per month, and other incidentals such as tests and doctor visits costing roughly  $3000 per month; I am all for universal health care. Just because you can’t afford it, doesn’t mean they can choose that you are the one that will die. But as a person with a chronic illness, what I am witnessing globally about such care scares me. Until universal health care understands it is the doctors that should govern a patient’s care and not the job of big business, I am afraid it will be harmful for the chronically ill.  We all need to act on this and bring awareness to this fact.

There is, however, something we can all do right now. We need to stand up in this world and be counted together. I first agreed to take this drug because of the possible benefits it will have to furthering research, so that someday they will find a cure for the five million sufferers’ world wide. We need the rest of the world to come on board as well. Please do your part and sign the petition to help others like me.  http://online.wsj.com/article/BT-CO-20110930-703836.html  (wall street journal article)

http://www.thepetitionsite.com/1/cover-Benlysta/  sign the petition