About Lupus Thrivers
Through this work, I meet fellow lupies and our allies, all pilgrims on the same perilous path, activists and advocates, all doing their best to raise awareness of this harsh taskmaster known as lupus.
We may have lupus, whether SLE, Discoid or DIL. We're as likely to have Fibromyalgia, Hughes (or Antiphospholipid Antibody Syndrome), Raynaud's Syndrome, Crohn's, Celiac, Graves' Disease, Sjogren's, Multiple Sclerosis, a type of diabetes or cancer or any other related disease. We might even have a few, rubbing up against each other and rubbing us the wrong way. They're all kissin' cousins in the same ferocious family. We stand together against them, one and all.
It is an honor to share my work, my hope and my resolve with others of equal commitment. It encourages us all to realize that in our efforts, we are not alone. We are compatriots and co-workers at distant desks, linked together by not only our disease but our determination to serve this great purpose.
My aunt, Jeanne Gessner, has raised a big family, hiked peaks and canyons around the world. She and my Uncle Jim rode off on his motorcycle 60 years ago and they're still riding, still flying high, wide and handsome, at 80 years old. After decades of dueling with Celiac Disease, she says, "For some of us, life is a crucible and we are like fine china; we just get harder."
Courage, as our friend Sharon Sanders so rightly says, is not just for those we usually call heroes. In real daily life, it is facing adversity without surrender and helping others do the same. In our lupus community, we are surrounded by heroes. Whatever their own struggles, they all synthesize their pain into the passion of helping others.
Not all of those who labor on our behalf have lupus - many simply have compassion and a strong sense of responsibility. Some of us wend our way through the web, searching for research, resources and real world tips that will help you tie down your wolf. Others sit in forums, offering compassionate support. Many of us do both. Through this weblog, we meet several of our lupie defenders and learn what keeps them fighting for us all.
We may work in close companionship with others of like mind or we may work alone. Yet, we don't feel alone - we are one with all of you, readers, researchers, writers, publishers and all of us in pain. We will not surrender to this disease, nor go gently into that dark night - we're burning the midnight oil, lighting candles in the darkness, reaching out to our friends, known and unknown.
Sometimes it's hard for us to sleep, thinking of others across the globe, wondering who suffers without understanding and support. Sleep doesn't come easy for any of us, with the wolf as bedmate and pain as our blanket. We try to give you what we all need - the strength to go on, the humor to laugh in the face of fate and the tools it takes to prevail.
That sense of duty is a rerun of Sisyphus and the boulder, a task that will never end. We welcome it as we embrace you, glad to be of service and grateful for your support. Life is hard, and lupus widens the treacherous territory but we can ease the trek along our rocky road. The blessings lie under the boulders and our bruises are our Purple Hearts.
We're all rolling the rock uphill, all being rolled over, all crawling out from under and striving forward again and again. If your family just doesn't get it, we do. If those you love won't wrap their understanding around you, we will. If your medical support is not supportive, we are. Here, on our weblog, we share our stories so you will know you're not alone.
Take Care, Take Heart, Take Courage,
Shar
(Our story links are on your left of this page, second and third from the top.)
"Learn To Live Again" (Invata Sa Traiesti Din Nou)
I was first diagnosticated with Systemic Lupus 3 years ago. It started after a strong emotional events in my life. There were no warnings, just a complete collapse. Pain, awful pain in my joints with no "medical explanations" and leukopenia. I was immediately hospitalized and for 2 weeks the doctors tested me with no final results.
But I was lucky - one doctor from the Colentina Hospital in Bucharest correctly diagnosticated me with Systemic Lupus. I had no "butterfly" mark on my face, no other skin related signs except photosensitivity. Doctor's name is Stefanita Tanaseanu and he is one of the few Lupus' specialists in Romania.
At the beginning I was terrified because I had no good info about lupus. I almost thought that I was going to become "wolf alike" in matter of days :). It's hard to have no official info about Lupus! No national websites with related infos, no published books about it, NOTHING! Not even non-governmental foundations related to Lupus.
So, that anger I felt back then was a good start for the "www.lupus.ro" idea. The next months after the diagnostic and after starting the medication I've noticed the first improvements in my general condition. I could walk with no pain! I've taken Plaquenil and Medrol according to the latest international medications. I felt well and hopeful until the start of the side effects of the drugs. I had to get accommodated with my swollen face, weight loss, anxiety, sleep deprivation, nervousity and depression and I hoped it all would pass soon. Unfortunately, after three years of treatment I still take 200 mg of Plaquenil and 8 mg of Medrol a day.
The most recent results of my tests shows that I'm better and I feel this way. But, more than all the flares of my lupus and the side effects of the drugs, what really made me upset all this time was the fact that I didn't know how to live as a lupie person, I didn't know which were my new limits and I couldn't make myself understood to the others. All this situation made me choose the slogan "Learn to live again" (Invata sa traiesti din nou) for my website.
As for the www.lupus.ro it was made to be a "experience talk" platform for all the Romanian lupies. It was also intended to have useful infos for those close to the lupies like relatives and friends. The family and friend's support is crucial for those with LES as I've noticed myself too. That's why we already have a forum and we plan a live chat system for the website. In few days we'll start the online photo gallery for the site members so that anyone can upload their own photos.
For the long run plan we are starting to gather info about a Lupus Foundation in Romania. We already have all the media related means as my friend Stefan, the other admin of the site, has an advertising agency. He also made the structure of the site and hosts it. So, it will be easy to design some lupus brochures, print some lupus awareness t-shirts, organizing lupus events and contacting the right officials and also the sponsors. I guess it will be a "hit" for the lupus acknowledge. This are the main objectives we follow in the next years. The beginning is hard but we are optimistic.
Romania is traditionally known as a francophone country, but the new generation changed this tradition and almost all young people speak, better or worse, English. As for the recent integration of Romania in the EU, well...we know there is a long way to cover till will get the bright side of our European status. However, I hope this will open new opportunities for us to search new ways of improving our condition and to have an easier access to the most recent scientific results.
We wish you a wonderful new year and, as the following traditional Romanian song for this season says:
"Sorcova-vesela
Sa traiti, sa imbatraniti,
Ca un mar, ca un par,
Ca un fir de trandafir,
Tare ca piatra, iute ca sageata,
Tare ca fierul, iute ca otelul
La Anul si La Multi Ani!"
"Sorcova*, happy sorcova*
Live your life and get old,
Like an apple tree, like a pear tree,
Like a rose
Strong as the stone, fast as the arrow,
Tough as the iron, sharp as the steel
A happy New Year!"
Patricia & Stefan
Lupus Romania
Sharon - Finding Solace in Sharing
(Sharon co-moderates LWLupus, a popular online support group with Sherry, whose story is also here. This bright blossom knows that those who share their struggles sow fertile seeds in rich soil, to grow a garden of friendship.)
My name is Sharon, age 40, and this is my story of living with lupus. In the early 1990's, the first subtle signs of lupus began to make themselves aware in my body. Little did I know, this disease I had never heard of before was going to have such a profound effect on my life. I think back to how active and energetic I had always been, never even sick with a cold, and now I grieve for the old me that lupus has robbed.
As I approached my late 20's, I noticed more and more the morning stiffness in my joints and muscles. My energy level was low and I'd have to nap more during the day. And the 5 day headaches came every month like clockwork; the pain excruciating. What was happening to me?
My husband and I were on an 8 week job in Baton Rouge, LA when the "wolf" attacked in full force. The usual muscle aches were worse than I had known. Looking in the mirror, I noticed my face was bright red and hot to the touch on cheeks, forehead and chin. And a measles-like rash covered me from head to toe.
Desperate to know what was going on, I went to a 24 hour clinic and after blood work, the doctor said matter of factly, "You have Rheumatoid Arthritis". I was relieved to have an answer and to know I wasn't dying. I was given the NSAID, Voltaren, which relieved the pain and took the headaches away. Now I could get on with my life.
The years went by, and due to no medical insurance, I rarely saw a doctor and just accepted the fact I had a potentially crippling disease. I pushed it into the back of my mind, treasuring the days I felt good, and staying in bed with a heating pad on the bad days. Getting a second opinion never entered my mind.
More symptoms appeared, sending me to my medical books, as I tried to self diagnose. White, numb fingers when exposed to cold, a 4 inch bald spot on the top of my head, fatigue that would consume me, panic attacks and bouts of diarrhea that would cause me to flare. Although I looked fine on the outside, on the inside, I felt like an old woman. I always felt as if my body was contaminated. As if my blood was poison.
Any doctor I did see doubted the Rheumatoid Arthritis diagnosis since I didn't show any signs of swollen, disfigured joints. Bloodwork always showed a low white count, but no other tests were done. I just trusted, as so many do, that the doctors knew best.
Being sick and tired all the time, not only affected me physically, but emotionally, to even thoughts of suicide some days. Bouts of depression and panic attacks still plague me.
In 1999 and 2000, lupus brought on its most vicious attack since onset. I developed small sores, some the size of a pin head, that slowly grew, many to the size of my fist, on my arms and legs. My skin would slowly die and form big, black scabs and leave deep scars. I sought treatment from a teaching hospital and every doctor said the same thing - they had "never seen anything like it".
Antibiotics did nothing, a TB test was negative and one even suggested leprosy. It was in the Dermatology Clinic that I was finally tested for Systemic Lupus. Bloodwork confirmed it. I was thankful to have a firm diagnosis, but shocked to know it was Lupus.
As of this writing, I only have one sore on my leg. The rest have long healed and faded to only scars and although my legs and arms are full of scars at least they don't hurt.
The loving support of my family, friends and the Living With Lupus support group, gives me the strength to keep fighting. Many have asked how I cope, and I really don't know how, or even if I am coping. Lupus is a reality in my life and it doesn't give me much of a choice.
Within a week of being diagnosed with Lupus in August 2000, I knew I needed to find support of some kind. I knew nothing about lupus then other than it was not curable. I had to find others to talk to, to reach out to, and to reassure me I was not alone. That happened when I went to Yahoo Groups and typed in Lupus in the search engine. Up popped a gazillion groups! Where to start? The first one I clicked on was called LWL. {Living With Lupus).
I read awhile and I felt at ease right off. I posted an intro and within hours I was embraced with tons of luppie hugs and words of hope! That was almost 4 years ago! I look upon that group as family. We are all connected through lupus, but also through something much bigger than lupus. We are connected through heartstrings of friendship. I can't imagine not having all these dear friends in my life.
The support and understanding we all give one another everyday is something I cannot live without. I have learned about lupus, about myself, about others. I have formed lasting friendships with people I may never meet in this lifetime. But I know them and they know me and that is all that matters.
I would encourage anyone who has lupus, or any type of autoimmune disease, to pay a visit to our
LWLupus Group at Yahoo. Kick off your shoes and stay awhile. We guarantee a hug at the door and that when you leave you will be smiling.
As a Christian, I feel God allowed this illness in my life for a reason, for potential good. Lupus may attack my body, but it will never kill my spirit. It will never stop me from reaching out to others who are going through the same thing and saying, "I understand and I care, and let's fight this battle together." If my life and my pain touches but one person, then I can honestly say that it is good that I have been afflicted. I will face what the future holds with hope.
I know God is right beside us. I have a very strong faith, have since childhood and I know whatever God's will is, that is what I want. God doesn't bring the bad things but the bad times we go through are life's lessons and are only meant to draw us closer to Him.
Two most important figures in my life are my husband, George, and my 4 year old Black Lab, Bear. When the pain from my leg ulcers were at their worse, my dear husband would help me dress them. He would see my tears and pain and would say many times he wished he could take the pain on himself. He kept the house running and errands run when I couldn't. He held me when I hurt and made sure I stayed off my feet. How blessed I am.
And my Lab, Bear would never leave the foot of my bed as I changed the wound dressings. It could take an hour and I would be broken out in a sweat and crying, and he would stay there to bring me comfort.
I would limp to the couch afterwards and Bear would go to his toy box and find just the right stuffed toy and bring it over to me and lay it in my lap and look at me with those brown eyes, as if to say, Mom, this will make you feel better. My tears always would be replaced with a smile.
I have found one thing that has been the most difficult in my living with lupus and that is learning to deal with the stresses in life. Stress = flare-ups and I seem to stay in a perpetual flare.
Since 1998, my husband has had so many surgeries from everything from triple bypass to abdominal aortic aneurysm surgery and I stay in constant worry over him and his health. I found even when he is doing good, like now, that I stay tense all the time wondering when the next shoe will drop. I have read so often how best to deal with stress while having lupus, but have found it so difficult to put into play in my life.
I am a chronic worrier, have been since childhood so visualizing and staying calm is easier said than done for me. But still I keep plugging along. I know that the best gift I could give to myself is to put myself first. Listen to my body when it says, time to slow down and rest. I don't always listen, but am slowly learning to do so.
My husband, George's, last surgery had to be the worst yet. He was scheduled to go in for a routine operation to have a kink repaired in the bi-femoral bypass that feeds blood to his legs. As I sat in the waiting area, I left it all in Gods Hands, knowing this surgery would help to buy time in saving his legs.
After 4 hours, I finally got a call to let me know how the surgery went. The doctor's voice began, "The surgery went fine and was uneventful, BUT". That one little word made my heart leap into my throat and my knees weak.
The doctor went on, "BUT, his heart stopped as we were extubating him. We used the paddles and he came right back but his heart is tachacardic and we are waiting for the cardiologist to get here". I felt numb!
After an hour I was allowed to see him in ICU. He was covered in tubes and the tube was in to assist breathing. He had gone into ventricular fibrillation and between operating room and ICU had gone into cardiac arrest 3 more times. I could see the burn marks from the paddles on his chest and rib area.
He was awake but clearly out of it. I stroked his head and assured him all would be okay. The doctor told me to go on home, he was in good hands, but said, there are no guarantees how this will go and to prepare myself.
I prayed like never before and God surely heard. Two days later, I went into ICU and my dear hubby was sitting up in bed, no breathing tube, eating a regular meal and cracking jokes with the nurses! He went on to have a defibrillator implanted so if his heart goes into V.Tach again, the defibrillator will kick in on its own and shock his heart.
I went up to see him and he was sitting up eating spaghetti. I said "God has a purpose for you and wasn't ready for you yet" and he said "Yes, God knows you have Lupus and you still need me here to take care of you". Talk about touch my heart!! What an awesome man.
I tell him now that if my car battery ever dies, I've got my own built-in charger on board. He is a truly remarkable man, my best friend, my soulmate. I swear he is tougher than a boot.
Hubby dear, my bestest friend, is wonderful in keeping me on an even keel. He never gets upset with me if I let the housework go or don't feel like cooking. He will get in there and pitch in like a real trooper. He and I have learned to laugh at my brain fog moments, which have been numerous of late!
Just yesterday, I wanted a cup of coffee. The pot was off, so I put it in the microwave to heat up. After a minute, DING, I pull the cup out - it is empty. Somewhere along the way, I forgot to pour the coffee in.
This morning, hubby wanted scrambled eggs. Okay, I get a cup to whisk the egg in, so far, so good. I crack open the egg over the cup and I find the cup is upside down! The egg lays there staring up at me a second and then slowly oozes over the side. Sigh. One thing I can say, is I laugh at these brainfogged times! It really is comical to me and it's a lot better to laugh than cry.
So this is my story and I appreciate any taking the time to read it. Whatever you face in life, be it illness or burdens, never give up hope. Life is a gift and it is our duty to live each day to the fullest and to touch others with our own lives. It is not the well known people in the world who achieve greatness. It is people like you and I, who bear one another's burdens and make the journey an easier one.
©2004 Sharon Sanders
A Sad Update and A Loving Tribute to True Soulmates
For our Lupus NewsLog Thrivers, my beloved friend
Sharon wrote so touchingly of her faith, her lupus, her loyal husband George and his own struggles for survival. Sharon’s SLE has been extremely fierce and George has had severe heart related problems with repeated surgeries. Through all the pain and anxiety they’ve endured, their faith in God and in each other, purified by fire, has grown stronger, deeper and richer in wisdom. Their marriage has been a true meeting of minds and blending of spirits, with compassion flowing like a stream between them and pouring like a waterfall onto their family and friends.
On July 7th, 2005, after twenty-two years together, George flew free of his pain, because his body, made so fragile by his suffering, could no longer shelter his buoyant spirit. As they have always done for each other, Sharon quietly, gently, tended his needs, this time, through his last good-bye. My heart breaks for them both but I know they are only parted by time and not by spirit. Sharon and George are two of the most exceptional people I’ve ever known and my life, like all the lives they’ve touched, is enriched and strengthened by their kindness.
Nowdays, we often speak of ‘soulmates’ but Sharon and George have exemplified their marriage vows with a rare devotion to each other. Some people become teachers or mentors by profession, some through character and conscience. I am grateful to Sharon and George, for all I’ve learned by loving them and I am thankful to be their true friend.
Julie's Journey
(Julie is webmaster of The Lupie Bin, a worthy web information resource and a compassionate haven. She is a dedicated person and a precious gem in the chain that links us all together.)
LUPUS. What a long, strange trip it's been! The first time I heard the word Lupus was in 1987. I was 22 years old and taking three allergy shots twice a week in an effort to get control of my asthma-causing allergies. One day I just happened to mention to my allergist the amount of pain I was suffering. I've had pain since I was a child and just assumed it was 'normal'. But, this day, it caught the attention of my allergist and he suggested running a panel of lab tests.
At my follow-up appointment, I was stunned to learn that some of the testing had come back "positive", in particular the ANA (antinuclear antibody). The doctor said to me "I think you may have Lupus." Well, that just about floored me! The only person I had ever known with Lupus, a schoolmate's mother, had died young and suddenly!
This revelation started me on a path looking for the "right" doctor with the "right" answers and the "magic cure". Consequent tests all proved "negative" and the diagnosis was different with each doctor. I've heard everything from MS to fibromyalgia to depression to brain tumor!
Upon introduction to my local Lupus support group, I learned I was not alone in my symptoms. Here there were actually people who felt just like me - young and old. My current physician was a speaker at that first meeting. When I mentioned my symptoms to her, she was not at all surprised. It would still be several years of bouncing around from doctor to doctor before tests, symptoms and criteria confirmed Lupus.
Looking back to my adolescence, it is obvious now that Lupus may very well have been lurking in the shadows. The sudden and dramatic weight loss in high school after prolonged exposure to the sun. The days in bed, too weak to function, but not really "sick". The intense and unexplainable raised sunburn - I'd always been a tan sunbather before. And then there was always the rash on my face, looking more like "too much sun" rather than a "rash".
As the illness progressed, my social life plummeted. I felt that nobody would want to saddle themselves with a sick partner. I also found that people I thought were my friends quickly vanished when the going got tough. Boy, you sure find out fast who your true friends are in the face of illness!
Any idea of career aspirations suffered, too. Too sick to work full-time any longer in 1992, I started working part-time at the local hospital in data processing/reimbursement. September 1998 saw the end of my working life when I had to resort to disability in order to preserve what "energy" I had left.
Lupus has affected my central nervous system, making it difficult to function "normally" most days. Memory loss, headaches, irrational behavior, visual disturbances, increased intracranial pressure, neuropathy, and confusion are just a few of the symptoms I experience, along with the usual fatigue and pain of Lupus. Not to mention the effect the medications have - that's a whole other ball of wax! Nonetheless, I have hope for a cure in the future and, for myself, a return to better days.
The Lupie Bin was born February 2001 in an effort to help other lupies find the real lowdown on lupus and to get the sense that they are not alone. So many of the people, primarily women, that I get letters from tell me that they felt so alone in their disease until they happened upon The Lupie Bin.
Not only do these lupies feel alone, but are so hurt and disturbed by their friends and family members who do not understand lupus and label them "crazy"! They so often express to me their relief in knowing that they are not crazy and that they feel they have something tangible to show their loved ones, to help them to understand. This has been an amazing gift - one I could never have anticipated when first starting The Lupie Bin.
September 2003 saw the addition of
The Lupie Bin's MSN Group. This group was started after I received numerous letters from fellow lupies searching for pen-pals. Some wrote looking for a forum to connect with other folks living with lupus.
The membership is growing daily and the members are amazing. They support and understand each other, and in doing so give and receive strength. I am humbled to be able to provide a place where lupies can come together and share, teach, learn and connect! The Lupie Bin's MSN group is a moderated message board forum for individuals diagnosed with Lupus and is directly linked to The Lupie Bin website.
Living with lupus can feel like an isolated journey. Not everyone has unconditional support from friends and family. Here you will find understanding, comfort and friendship with fellow lupus survivors. Join us; learn and share with lupie "veterans" and "newbies" alike. To quote one of our amazing members "...What you are really doing is singing in a choir. Because although we may have symptoms at different times, we are all on the same song."
I do not spend as much time on The Lupie Bin as I would like, as it is a never-ending battle to keep the wolf at bay. But I dedicate what time I can (and what my brain and body allow) to keeping the site up-to-date and running smoothly. I appreciate so much the kind words from friends and fellow lupies who like the site and find it to be a source of information and help. After all, that is the foundation of The Lupie Bin - to inform, assist, and lend support.
©2004 Julie Silva
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Kris - Running With The Wolf
(Some of us try to outrun the wolf but Kris has faced him eye to eye, accepted him as her kindred spirit and runs alongside him. She runs life’s marathon with faith, hope and humor, encouraging us all to do the same.)
According to my internist it was in the spring of 1984 that I started complaining of having pain in my feet that just wouldn't go away. I had soreness and stiffness in other places. My doc started me on various NSAIDS which, of course, some were ok; some made me sick, some didn't work. Finally in the summer of 1985 I had so many different complaints, sun-sensitivity, hair falling out, a low grade temp for no apparent reason, more and more joint pain and this lovely red, lacy rash looking stuff all down the front of my legs that just would not go away. Dr. S stated then that she thought I had lupus and was going to do the panel of blood work, which, of course, came back negative. She repeated, she still thought I had lupus and would keep testing me periodically.
At this time I was 32, working full time as a psychiatric nurse in a state mental institution, divorced, and a single mother. I have suffered all my life from migraines so that wasn't a new thing. However, in 1988 I started having difficulties with my menses so, once again, Doc S. listened to all of my multiple complaints and how many days a month I was missing from work due to the migraines which coincided, of course, with my cycle, and how bad the cramps were, and sent me to a GYN who did a D&C.
Now, being one who HAD a high tolerance for pain, this was performed under a local and before the GYN got back to the room to discharge me, I had already taken out the IV, showered, dressed and was waiting for him! As he was walking down the hall, to leave, I yelled at him, "Can I go to the new galleria in Birmingham?" He said, "You are doing so well, you can do anything you feel like doing." So, I went off to the huge new place to shop until you drop.
In 1992, things had gotten to the point it was all I could do to go to work everyday. The minute I came home from work, I showered, put on pajamas and laid on the couch and slept until bedtime. It was a good thing by then my son was 16 and was a better cook than I and could take care of himself. I would drag to work and then do "my time" and drag home and the cycle would start over. This went on for about 3 months before my sister made me go back to the doctor.
My doctor sat down and I just burst out crying. She told me I was depressed and I just couldn't believe I was a psych nurse and didn't recognize my own symptoms. She told me she still thought I had lupus, although nothing would confirm or deny it. She then put me on Prozac which I have remained on to this day. It probably keeps me from becoming homicidal!
In 1994, I started having trouble with the menses again. Dr. S sent me to UAB Kirkland Clinic to see a specialist in November. Well, believe me, by May of 1995, I was sick and tired of being stuck for blood, sick of intravaginal ultrasounds, having all of these pelvic exams, and nothing showing anything! I was fed up. I told the nice young, good looking (picture Antonio Banderas) doctor, "Look, Doc, I am sick and tired of this. I will be 43 in September. My baby is 19 and is living in Wisconsin. I don't want another child. Can't we just do a one day laser hysterectomy and be through with this?" He agreed. Then I told him, if you find something that isn't supposed to be there, don't wake me up to talk about it, just remove it.
I went into the hospital on Thursday, May 15th for one day surgery. I only packed a suitcase because my sister insisted. I came out 8 days later because the Antonio Banderas look alike had found ovarian cancer. My CA-125 marker was always within the normal range and the intravaginal ultrasounds were always ok. He immediately called in the oncology team and, of course, the laser was no longer possible. I had gone into surgery at 11:00 am and I remember them waking me up at 5:30 pm and telling me I had cancer. My response? "Well, I guess that's nice. Someone has to have it."
The doctor's nurse had taken a shine to me and we had talked so much. When she found out what had taken place in surgery, she made reservations for me in the Camilla Wing of the hospital (huge private rooms with 5 star accommodations). It is kind of funny how when you are the patient, all of your nursing education goes right out of the window. When I woke up, my sister and grandmother were sitting there. I was sort of sick and they both jumped to get the basin. I could tell my grandmother had been crying.
The next thing I remember is opening my eyes to a roomful of white coats. They make rounds before breakfast at teaching hospitals. The head of oncology was there and explained everything to me in terms I could understand. He told me all of the biopsies around the ovaries had been negative. However, each ovary was about the size of a small baking potato but everything was self-contained. And how lucky I was. He said he would have to do some checking to see what the next step would be but I wasn't going anywhere for at least a week.
He returned and said I was in a gray area. He had checked with several other teaching cancer centers and that if I were his wife or daughter, he would tell me not to do chemo or radiation. So I didn't do either one. I was finally released to go home. Six weeks later, it hit me. I had cancer! Wow! Talk about falling apart and being so thankful and prayerful at the same time.
About the end of July I started throwing up and the only thing I could keep down was iced tea with lots of lemon. My sister and I drove to Great Lakes Naval Base to see my son graduate in the honor company. Well, I threw up all the way there. The area of my diaphragm was killing me. When I saw Kristopher, he said, "Mom, you look like death riding a biscuit." Never had heard that expression! We all went to lunch to celebrate and my ex-husband paid for lunch. Just my luck that all I could eat was a baked potato and a glass of iced tea with lemon!
On the way home from Chicago, my sister informed me, "I have listened to you throw up all the way up here and will listen to you until we get to Birmingham. Then I am going to take you back to UAB and put you out. I can't stand this much more. It is either that or I am going to kill you." She said it so calmly, I had to laugh. By this time, the pain was so much worse I was in full agreement with her.
We arrived at UAB ER at 1:30 pm. I was triaged and had a temp of 101 at that time. I wasn't seen until 6:00 pm and they couldn't figure out why my temp was 103. Told them, could it be that no one has given me any Tylenol? Well, because I checked in under Dr. Antonio Banderas's name, they kept thinking it had to do with the hysterectomy. I don't know how many times I was examined "down there" or how many times I told them my pain is here, pointing to my diaphragm area.
FINALLY, a young male intern listened to me. Someone brought me a 7-Up and a couple of Tylenol which I immediately threw up. I was admitted to the hospital. When I got to the room, I asked the nurse if I could PLEASE have a shower because of all of the pelvic exams I had just had and I would be really quick if she would take her time before she came to start the IV. Alien abductees have nothing on me except that my loss of time and stuff happened in a hospital!
Because it was a weekend, nothing could really be done until Monday. I was hooked up to two IVs to give me fluids and my temp was all over the place. The doctor came in early Sunday to check on me and found me in the recliner chair because I couldn’t lie down because of the pain. They FINALLY gave me something for pain and kept it coming so that I could get some rest. Of course, I was pretty much on nothing but ice for food.
After rounds were made on Monday morning, the doctor promised to find out what was wrong and why I was having pain. Then the nurse arrive with three HUGE cups of this awful concoction she wanted someone who has been nauseated and vomiting to drink so that I could go have a cat scan with contrast. Told her I would try. Talk about projectile!
Finally, after she realized there was no way I could get that awful stuff down, out came the nasal/gastric tube. Giving birth was easier than having that tube put up my nose and down into my stomach. As it went up the nose cartilage, I thought it was going into my brain. I gagged as it went down my throat. Finally, it was in place and I told them just to keep putting that stuff in and call CAT scan and get me down there fast. Finally all that was over and I came back and threw everything up.
Eventually, the doctor came to tell me they had found a pencil eraser-sized blood clot in my hepatic duct. An intern remembered from my records that I was being tested periodically for SLE, so they tested me and viola! I was way past positive. My first one was 1:15,352 speckled pattern. The doctor said the clot was APS or antiphospholipid syndrome. Ol' Wolfie had come to live with me.
Strange things happened. I’d reach for a glass of milk and would reach too far and make a mess or could not reach it correctly the first time. I would find a gallon of milk in the cabinet and a box of cereal in the refrigerator. Was I losing my mind? I didn't have the energy do the things I enjoyed doing. I couldn't stay outside in the sun. I was started on plaquenil but couldn't tell it was really doing anything and tried most of the NSAIDS. Some worked for awhile, others I couldn't take.
My symptoms got worse and worse. Finally I tried methotrexate but found I couldn't take it by mouth. However, I could take it by injection. I would run into the doctor's office every Friday morning and get it. But then I felt like I had been hit by a freight train over the weekend. Not much energy at all, but I continued to work full time. After about 4 years of the injections my liver enzymes started going up and I had to find something else.
Well, in 1999, Doc also said that I needed to retire on disability and get away from the stress of work because signs were showing up in my kidneys. That was June. In October when I returned, she asked how retirement was. I told her I hadn't retired and she chewed me up. I went back to work and put in my retirement papers. I officially retired the first day of December 1999 and I started the disability process that day.
Also Chu-Chu, my Himalayan cat, entered my life. He and I bonded on the couch for two weeks as I did little but cry for those two entire weeks. I didn't want to quit work. Chu, because of that month, became my baby. Now, I already had a little dog named Fudge that reminds you of Toto of the Wizard of Oz. So, they learned to adjust to each other and my sister adjusted to the cat and we lived in harmony, pretty much. I wasn't able to live alone because I started falling and my sister and I had already combined homes so that was one less worry.
Also in 1999, I met a lupus friend from an on-line group face-to-face. We had been chatting for a couple of years and she was very sick and had to have some type of experimental surgery and I wanted to see her before she had the surgery. My sister and I are huge fans of the music group, Alabama and went to Ohio to see the band and then went to the northeastern corner to meet Nisey. Something really clicked and she filled a void in my heart that I didn't even realize was there. She is now like a daughter to me. In fact, I call her my Yankee Daughter and she calls me her Southern Mom. She has a heart as big as Texas.
As a single mother, she had adopted three girls: one has lupus nephritis; one was neglected and abused; and one was a crack baby that no one wanted. Nisey took them all in stride. Then she married and they had a surrogate son and found she was 7 months pregnant with another girl. Later they found out that the second daughter had a twin brother in foster care who is now living with them. Not long ago, a teenage girl was placed in the home for foster care until after the hearing and will be staying on there. As I've said, her heart is as big as Texas. She and her husband have said that when I get to where I need to go to the nursing home, they are going to take me to their home. I love her just like a daughter.
Chu had to go for a check up and shots about a year later (and I am still waiting to be approved for disability, turned down once) and my vet had 5 little Siamese kittens and was trying to find homes for them. I, of course, wanted one, but kept looking at my sister. Finally, she said, "Doc, just go get us a box to take him home in." Enter Ching-Ching. Ching was actually named by my grandmother. He has chocolate markings and a black mask on his face and the bluest, clearest eyes. He is very shy and doesn't make the usual Siamese noise. Actually Chu is our talker. If I am not home, he calls "MOM” and talks a lot. When Grandmother was so sick I took him over there and she told me that she now understood what I meant when I said that Chu is a talker.
About 18 months ago I started seeing a rheumatologist whose specialist is lupus. I have been so fortunate with my doctors. Doc S.'s second degree is pediatrics rheumatology and when she didn't know what to do, would send me to Birmingham to see a specialist there because I refused to see the only rheumy here in town. When she sent me to the new doctor, I asked if she was trying to get rid of me. However, the new doctor is just wonderful. Sometimes it is sort of hard to see him, but he doesn't complain about weight gain! Then he referred me to a pain management doctor that has been absolutely wonderful. She introduced me to a muscle relaxer that has really cut down on my need for so much pain medication. She really talks to you and listens. After some of the nightmare stories I have heard about doctors, I know that I am very blessed.
The only thing my internist and I have ever disagreed on, besides my retirement, is my migraines and the lupus headache. I have taken in Dr. Daniel Wallace's book, but she doesn't seem to think they exist. I know my migraines and I know the new headache has to be the lupus headache that he refers to in his book. However, she has never told me that anything is just in my head, which is an attitude that so many others have had to go through.
Currently I am taking CellCept for the lupus and my titer is now down to 1:360. At first I questioned the choice of medications. However, since it is for organ rejection and my body is rejecting itself, it makes perfect sense if you think about it. I still have days that I just can't go. I still go from one flare straight into another one, sometimes there is not a break in between, sometimes I would cry, except that I can't due to the Sjogren's and there is nothing worse than an old ugly face without the tears!
One way I cope with having lupus is to picture the majestic wolf. When I am feeling really lousy, I say I am running with the wolf and call myself a wolfrunner. It is so much easier to deal with an animal than an illness or disorder. Of course, there is always non-ceasing praying, counting my blessings for what I can do and for what I have, lots of heat, a tens unit, vibration, imagery, and meditation. And, of course, my critters. Chu usually knows before I do when I am flaring. But, honestly, the best things are laughter and chocolate!
The newest addition to the household is a 3 month old cockatiel named Kokopelli which we shortened to Pelli. He is just a wonderful creature. He has already bonded with me. When I am here at the computer, I move his cage over here and he sits in the corner closest to me and chatters and whistles. Currently, he is sleeping. I think the clicking of the keys puts him to sleep. I keep saying simple phrases over and over to him so I hope he starts talking. He has bonded with me so I guess I am his "mama". Kristopher had him out last night and Pelli soared and flapped from him until he got to me and then he clicked and loved against me and then found my natural stone amethyst bracelet that he so loves.
In 2002, my sister and I went out west to New Mexico and about dusk on one of the many roads we were on, a wolf ran across in front of the car and just sat down on the side of the road. I made my sister stop the car. The wolf and I were staring at each other for a good 5 minutes before my sister said we had to go. I was just so awestruck by that sighting.
I know that eventually I am going to lose this race, but I am going to give it my best shot. A doctor who is married to a friend of mine gave me a compliment one day not too long ago. He told me, "You know, Kris, you are the second person I know who has managed to live longer than 5 years with lupus as bad as you have it. You are doing well."
Laughter is something that as wolfrunners we don't do often enough. However, looking for the laughter is something that we must train ourselves to do because laughter raises the endorphins that lower the pain threshold and just plain makes you feel better. For instance, this morning I thought my eyesight was getting worse. Well, come to find out, I had put on my sister's old pair of glasses instead of my own. I had even bought lens cleaning spray while I was at Wal-Mart to see if that would help! YOU JUST HAVE TO LAUGH--it is much better than crying.
The other thing about being a wolfrunner is you can NEVER give up hope. There are medical marvels everyday. Someday they will find a cure for this. It may not be in my lifetime, but there will be a cure.
Always remember it is better to have the information and not need it than to need the information and not have it. The more information you have about your illness, the easier it is to cope with your symptoms.
Seek out other victims of the wolf. You don't have to go through this alone. Join a group on line. Go to a group in your area. Just don't try to run this race alone!
Don't forget to laugh!
©2004 Kris Kutz
Sherry - A Survivor Gives Her All
(Sherry is founder of LWLupus, a wonderful online forum and the author of a psychological thriller. She gives the wolf who waylaid her as good as she gets, pulling no punches and packing a mighty wallop.)
I have SLE (systemic Lupus Erythematosus). Lupus is an autoimmune disease and there is no cure. Scientific advances have been made but there are still many things not known about Lupus. When a person has Lupus, it means the body's immune system is malfunctioning.
With Lupus, the body begins a war against itself. Lupus is not a disease that you catch from others and it's not a bacteria that invades your system, nor a virus floating through the air, waiting to attack an innocent body.
The body's immune system is designed to send out 'killer cells' specifically designed to kill off any foreign object that invades the body. This is your natural defense mechanism against disease.
With Lupus, the body itself makes a critical mistake. It sends out killer cells, built to destroy and to kill not foreign invaders within the body, but cells with the same DNA. When this happens, a person feels weak and sick as their body builds up a multitude of these killer cells and sends them off to do their work. This is a personal story because Lupus is a very personalized disease.
For each person learning to live with Lupus the story will be different because the disease affects each person differently. It depends on the cells within our body that are being attacked during a flare, as to how we are feeling and what our symptoms may be. Lupus patients have individual symptoms and these symptoms may vary a lot between any two people.
I have Lupus, but like many other people with Lupus, I also have other autoimmune diseases. Often these other autoimmune diseases seem to run a parallel course with Lupus. Not all Lupus patients have other autoimmune problems and some have more than I do. I was first diagnosed with Fibromyalgia and osteoarthritis. Lupus was suspected but could not be pinpointed.
Diagnosing Lupus can be very difficult. When a person has Lupus, it mimics other diseases depending on what part of the body is under attack. I was first diagnosed with Lupus in 1999. In 2001 I was also diagnosed with Rheumatoid Arthritis and Raynauds. I have Irritable Bowel Syndrome but this may be caused from any of the others problems I have. So often, these things are all linked together and you can't really break them apart into individual diseases.
Currently I am 53 years old and am on a treatment plan for Lupus that is working for me. The drugs used to treat Lupus and Rheumatoid arthritis are very harsh and hard on the body, but so are the diseases we are trying to live with. Each person has to decide what medications they are willing to take to keep the disease under control.
Lupus can and does become fatal. I have lost two good friends to complications from Lupus. The upside is that it's not often fatal anymore. Most people with Lupus can expect to live a normal, though restricted life span. For some Lupus appears fast and aggressive and it seems there is little to do to stop the progression of the disease.
For many with Lupus, it starts out mildly. Lupus progresses slowly over the years with the body doing damage to itself and the person affected doesn't realize what is happening until later in life.
I am not a typical Lupus patient, if there is such a thing. I am not plagued with Pleurisy and I don't have a low platelet count, nor do I have any known kidney problems. All of these are very common with Lupus.
For me it is very hard to tell you or my doctor how I feel. It is hard to learn which autoimmune disorder is acting up to make me feel the way I do on any given day. I now understand the severe chest pain and rib pain that I experience from time to time are much more related to Fibromyalgia than to Lupus.
I look at my hands and see the twisting knotted knuckles or feel the terrible pain and stiffness in my back and know that Rheumatoid Arthritis, or Osteoarthritis is kicking in. If my hands puff up and are achy and sore, I know that Lupus Arthritis is causing the problems.
I have had Lupus for most of my adult life, but did not know what was wrong and the doctors could not find out. Many with Lupus are often treated as though they aren't really sick and that their health problems are all in their minds. Years ago many Lupus victims ended up in mental institutions because of this attitude.
Since no 'foreign disease' is present, it is very hard to detect and pinpoint a cause for the frequent and prolonged illnesses a Lupus patient will have. I never went through this myself, but many of my friends have. The doctors always knew something was wrong with my body but could not diagnose it, so they treated my symptoms.
When I was in a Lupus flare, the doctors often thought I had Leukemia or bone cancer. Over and over I have been tested for Leukemia but each time I was found to be cancer free. I have never had any kind of cancer. What I do have is Lupus. My body builds antibodies and directs them to my newly formed red blood cells. I often test positive for anemia but test negative for iron deficiency.
My body is working fine and my bone marrow is producing an abundance of healthy red blood cells. Before my new red blood cells are mature and able to do the job they were designed for, my own antibodies were killing them off. This is one way that Lupus affected my body. This mystery was only solved a year ago! After years of testing and wondering, the doctors finally isolated the cause of my anemia.
Antibodies also attack my entire digestive system and cause severe inflammation of my esophagus tube, small and large intestines. This is another ongoing problem I have dealt with most of my adult life. I am plagued with nasal sores, swollen neck glands and achy muscles.
I felt like I had the flu for three years during the last bad flare. Through it all I consider myself very lucky. Each time my body attacks itself, destruction is done and then before it gets totally out of control, it stops! Over and over this has been the course Lupus has taken with me. For some the story is much worse. The destruction begins, it cannot be controlled and another person loses the battle against Lupus.
At one time Lupus caused severe inflammation of my blood vessels. My body was not able to pump enough blood through my system too keep a sufficient oxygen supply to my brain and heart. At this stage I was scared. I felt like I was losing my mind. My short-term memory was almost gone. I felt like there was a short circuit going to my brain.
At the same time, due to the heart not receiving enough oxygen, I experienced exhaustion like nothing I'd ever felt before or since. To walk up one flight of stairs I would have to move slowly. By the time I'd reach the top I'd be trembling with weakness and it was hard to breathe. I would perspire profusely as if I'd been doing a thirty-minute workout.
Over the years, since young adulthood, Lupus has been lurking through my body appearing first as one disease and then another. I gave birth to three children. Each pregnancy was worse on my body than the one before. The doctors had no idea what was wrong but knew something bad was going on.
My body reacted to pregnancy as if I was allergic to the baby I was carrying. I would become very ill and vomit during the entire pregnancy. My red blood count would drop to very low levels and nothing would help it hold it's own.
By the time I became pregnant with the third baby, I gained only 3 1/2 pounds before she was born. My red blood count was so low the doctor talked about blood transfusions, which I refused. As soon as the baby was born, within the first 24 hours, my red blood cell count started picking up on it's own. Just giving birth to the baby solved whatever reaction my body was having!
After the birth of my third baby, the doctors found my blood to be full of antibodies and thought maybe it had something to do with blood types or the RH factor. These antibodies never affected my baby, only me, and this was very confusing to the doctors.
I was told that if I tried to have any more children there was a fifty-percent chance I would not live through another pregnancy. I chose not to go through it again. Looking back, now we know that pregnancy caused a Lupus flare. With each pregnancy, the Lupus flare was much worse than the time before.
Lupus is famous for masking itself as other diseases and for me this certainly has been the case. About 15 years ago I was diagnosed with Cat Scratch Disease. The lab test came back positive. I was very ill.
Instead of recovering in ten day to two weeks, I continued to get weaker over the next few weeks. I was going to the doctor every week and no matter what treatment they tried, I did not recover. A few months into the disease, I took a turn for the worse. I lost 50 pounds and was too sick to live.
At one point my doctor told me that he had no more ideas on what to do. I refused to go into the hospital and he said he was doing all he could do and agreed to let me stay home. At one point the doctor told me that without a miracle and a strong belief in God I wasn't going to make it. My vital signs were all dropping and my body was trying to shut down and still no one knew why.
They thought it was some rare reaction to Cat Scratch Disease. Now we know that the Cat Scratch Disease started one of the worst Lupus flares of my life and I came very close to dying. At this point the doctors and I knew nothing about me having Lupus. Again, it had disguised itself as another disease.
I have had chronic liver problems for many years. Nothing life threatening but high liver enzyme counts, and Cirrhosis of the liver. This was thought to be caused by an early childhood case of Hepatitis. Over the years every doctor I have seen, including my family doctor today, has thought I have Hepatitis C. I've been tested for Hepatitis C so many times it has became a family joke.
Not one time did any of the hepatitis panels come back positive. I had no liver disease that could be found and I did not drink alcohol or take drugs. This remained a mystery most of my life, until I realized that it was Lupus attacking the liver and once again it's presence was in my body but disguised as something else.
Living with Lupus has been a challenge for me. Living with a disease that I can feel, know its presence is within me, but can't be found, has been a frustrating experience for me over the years. I knew something was wrong, the doctors never doubted that fact, but it went undetected for at least 33 years and maybe longer. It's very hard to trace back and see where it all began. The first pregnancy may have triggered Lupus but I will never be sure.
I have good days and bad days in dealing with Lupus. For three years most of my days were full of pain, exhaustion, and frustration. I had to move forward and insist on a proper diagnosis in order to receive the help that is available for my problems. Getting a diagnosis was a long hard battle for me.
In my case and with many others, Lupus masking itself as other diseases caused my diagnosis to be a very long, drawn out ordeal. This is often the case and it is sad to know thousands of people in the world are suffering from Lupus and they and their doctors are not aware of it.
There are no specific laboratory tests saying "Yes this person does have Lupus" or "No this person does not have Lupus." The doctors do have a series of 'indicative' tests called a Lupus Panel that they use to evaluate a patient for Lupus. Even so, these tests are not 100% accurate in detecting Lupus.
The tests are important but must be used in conjunction with an accurate health history of the patient. Present symptoms are also very important to the rheumatologist in diagnosing Lupus. Many people suffering with Lupus have other paralleling autoimmune problems so this complicates the diagnostic procedure even more.
I am a prime example of just how complicated the diagnostic procedure can be. I was first diagnosed with Lupus in 1999 at the age of 49. Later, another doctor decided I did not have Lupus because my Lupus Panel tested negative when he ran the tests.
Three months earlier some of the tests were positive and some borderline. After being on Prednisone for a month, the lab results changed to all negative. I held my own in searching for the cause of my illness and it was two years later that Lupus was discovered in a very active stage.
At this time, my primary care physician suspected I had Leukemia. I was not alarmed because this was old news to me and I was confident I did not have cancer of any kind. After several tests, Leukemia was tossed out the window. She then was positive I had some rare bone disease or bone cancer.
She and I discussed Lupus and other autoimmune problems, but she was convinced, according to my lab reports that I did not have Lupus. I will say this doctor was thorough and as determined to uncover the mystery disease, as I was. She sent me in for a full body bone scan, sure this would give her the answers she was looking for.
When the results came in, she called me into her office for a consultation. I had no bone disease and no bone tumors. I did have arthritis from the top of my head to my toes. She also told me I tested negative to Rheumatoid Arthritis, but had all the signs and symptoms. At this point she said she would have to give up because she had no more ideas to research.
This doctor said, "When I first met you and went over your records, we discussed Lupus and I was positive you did not have Lupus. I am going to retract that statement and say I think you have Lupus and it's masking itself as other health problems, but I can't diagnose Lupus. I will refer you to a specialist and let them find out what is going on. No doubt you do have an autoimmune disease but the specialist will be able to find out for sure which one it is."
I went to the rheumatologist with my stack of medical records, feeling discouraged and frustrated. This was not a new path for me. I was in extreme pain, weak, not able to concentrate, and still did not know what was wrong. I had a friend drive me to Bakersfield CA to my rheumatologist appointment. Whatever I had was affecting my memory and concentration. At this point, my husband and I were afraid for me to drive alone.
On previous occasions I had driven away from the house by myself, and forgot where I was going, forgot why I was out and forgot how to get home. At this point I called these moments 'blank spots' in my mind, for lack of anything better to call them.
I feared I was losing my mental capabilities and I was scared. I was frightened that not only was my body letting me down, now my mind was becoming seriously affected and no one could tell me why.
The rheumatologist looked over my medical records and did a very long health history on me. He said he was sure I had Lupus and severe arthritis, but wanted to do more tests. He did a Lupus Panel and other tests and told me to come back in two weeks. Two weeks later I returned to his office and he diagnosed me with Lupus.
My ANA was positive and two other tests on the Lupus panel were also positive. Along with these new test results and my long health history the mystery was solved. I was started on a treatment plan to help control Lupus and Rheumatoid Arthritis.
I still did not have the rheumatoid factor and discussed this with my doctor. He explained that only 80% of the people with Rheumatoid Arthritis test positive for the rheumatoid factor. That leaves 20% of the people with R/A that often go untreated. The doctor said a large majority of this 20% also had Lupus.
A person with Lupus often gets false positive/negative lab reports and it's another of the mysteries of the disease itself. He explained that when a person has a complicated series of autoimmune disease they run a parallel course and cancel out each other when lab tests are done.
In November 2003 I developed macular degeneration in both eyes due to the use of Plaquenil. I was taken off this medication immediately. My doctor started me on Methotrexate to help control Lupus and Rheumatoid Arthritis.
I have been taking it almost three months, but the doctor is gradually increasing the dose as he evaluates my lab work along the way. So far the lab reports look good and I'm showing any signs of having problems with Methotrexate but it is not keeping Lupus under control as well as the Plaquenil was.
I took Plaquenil for two years to the month before I was taken off of it. In October 2003 I noticed my vision blurring at times. By November of 2003 I noticed a blurry section in the middle of things I was reading, and small print on the computer was very difficult to read. Emails that came to me in smaller print had to be upsized for me to read. I know something serious was going on. I went to the eye doctor right away.
He dilated my eyes and did a complete eye exam and noted a cottony appearance on the macular of both eyes. He scheduled me for a computerized central vision test. I took the test and he compared it to one that he did six months earlier. There was a very definite pattern of macular degeneration in one eye and the beginning of a pattern in the other eye. This and extreme tiredness are two of the very rare side affects that can happen when taking Plaquenil.
Macular degeneration is damage done to the central vision and is always a rare possibility for those taking Plaquenil. Rare it may be, but it happened to me. It was caught early as I am very careful to keep up on visits to my eye doctor and now I'm thankful for that. During this same visit it was also discovered that I have cataracts on both eyes. Aging can be such great fun! Always something new to look forward to it seems.
It's been a long hard battle, but I feel I am winning the race after 30 years of running. Today I can slow down and stay on my treatment plan and put it all in God's hands. I would like to see more information about Lupus available to the general public.
Lupus is not a well-known disease. When I was first diagnosed with Lupus I had no idea what it was. Many newly diagnosed patients have not heard of Lupus until the doctor starts testing for it and talking about it.
Government funding for researching Lupus is small compared to many other diseases. Since Lupus is not well known, there are no major campaigns to raise money for research. The National Lupus Foundation has designated October as Lupus Awareness Month and this organization is a lifeline to anyone diagnosed with Lupus.
My goal today is to promote Lupus Awareness and to share my story with others. While living with Lupus I want to encourage all those suffering with chronic illness to continue to dream and to know they can make those dreams come true. My first book, Only a Game is being published by Publish America. This was a lifelong dream for me.
In my weekly newsletter, I try to cover ideas for success not only in writing, but in life. I encourage others, especially those with chronic illnesses to share poems and articles. I want others who suffer with chronic illness to know they can reach out and make dreams come true.
At my
AuthorsDen website, three of my poems are dedicated to Living With Lupus. The Silent Wolf, Memories, and Little Vampire Baby are Lupus related poems. I was invited to do an interview on AuthorsDen Live Radio Talk Show. Roger Vizi dedicated much of this interview to Lupus Awareness.
I am so grateful to Roger for giving me this opportunity to help with Lupus Awareness. You can download the interview and listen to our discussion by visiting the
AuthorsDen Radio Show. Scroll down the page and you will find the download link to my interview listed on September 21st 2002.
I read an article in AuthorsDen by Dreamweaver. She wrote about living with Fibromyalgia. She told about a day in the life of someone living with this invisible disorder. For many, Lupus is another invisible and mysterious disease. Living with Lupus is often very difficult because you look so healthy! Some with Lupus have such rosy cheeks and look like they can't possibly be sick! I have those bright rosy cheeks myself.
I run an online Lupus support group called LWLupus (Living With Lupus). This support group is open to all that want to learn more about Lupus. I encourage family members and friends of those living with Lupus to join and find out what their loved one is experiencing. Our group also supports those with Fibromyalgia, Rheumatoid Arthritis, Raynaud's and other autoimmune diseases.
Anyone is welcome in our group. If you have an interest in learning more about Lupus or learning more about those who are living With Lupus please join us at
LWLupus. If you have questions about Lupus or want to talk about it, please email me and I will do what I can to help.
©2002-2004 Sherry Gibson. All rights reserved
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Chris - Taking a Bite Out of the Wolf
(Chris decided early on to cook her wolf and run him through the juicer. She's developed sensational and satisfying nutrition solutions, generously shared in Cookin' With Chris, on our Lupus NewsLog Wolf Bytes page.)
"You have Lupus". Hmm, ok, I have had a cold, the flu, even chicken pox, but Lupus? What was that? "Ok", I answered, "what pill do I take to get rid of this?" My doctor looked at me, handed me a brochure and told me that Lupus was not "gotten rid of" and that I had a chronic condition that required medical attention for life.
You know those sledge hammers that hit cartoon characters? That is how I felt. Lupus. Actually, Systemic Lupus Erythematosus. I could barely say it, how was I going to beat this "stuff"? I was in such pain at the time, that I was glad to put a name to the problems I was having. Pain, fatigue, stiffness and my mind couldn't remember one thing from one moment to another. I was cold all the time and wasn't fun to be around. I was downright cranky. Really cranky.
I took the pills they gave me to help with the immune response and pain and prayed. After only two weeks, I noticed that I wasn't getting better. My pain was as bad as ever and I was experiencing a low fever that wouldn't go away. Little did I know that I was allergic to the medication and that this was only the beginning.
My journey was about to begin. By the end of the month, my fever was high and antibiotics were not effective. Nothing would bring the fever down, so steroids were prescribed. After a high dosage and another month, I was prescribed another immunosuppressant. I lasted another three weeks before hives set in. Hives that lasted 6 long weeks.
My doctor prescribed another immunosuppressant and this one not only didn't help, I broke out in water filled blisters. After three attempts at medications to help, my doctor decided that steroids alone should get my "body back on track". I felt great. No pain, I was working like crazy and felt like I could run faster than any car on the freeway.
Six months went by and the decision was made to start weaning me off the steroids. I felt like I had hit a stone wall at 65 MPH. All the pain came back and so did the brain dysfunction and the fatigue. I was miserable. I continued to cut the prednisone continually for the next eight years. Up and down, illness and steroids to get through it and then cut the dosage.
That is the "down time". It started out that way, but some of this actually has been a blessing. Ok, I don't like the weight gain and the thought that I might have to call Hair Club for Women in the future, but those are little things. I learned that I was striving too hard for things that didn't matter. I started looking hard at my life to see what I could change to make things better.
I learned that I had sleep apnea and that I needed a CPAP machine at night. Nothing like a good nights rest to get the bones and muscles a good start the next day. Reading everything I could get my hands on helped a lot. I learned that Lupus wasn't terminal. I could make my life more comfortable and even live into "old age". That was a relief.
The first week I was diagnosed, some misguided researcher wrote that the life expectancy of a Lupus patient was five years. Five years??? I was barely forty and I wasn't going down without a fight. Learning that diet could make or break you, whether you have Lupus or not, I learned that fresh foods and staying away from fried, fatty foods could lessen my pain.
Some good folks who were vegetarians taught me not to be afraid of vegetables. My idea of vegetables was pretty much corn on the cob or maybe broccoli. Learning how to cook again, was a new, fun experience. No more fried chicken with mashed potatoes dripping with butter and sour cream. No more late night dates with chocolate cake and heavy icing. I started liking fresh fruit for dessert, and actually found that sweets didn't taste as good anymore.
I was finally down to 40 mg of prednisone from 60 and I starting gaining weight. I gained 105 pounds in 8 months. Funny how no one advised me about diet. I searched and found that the more vegetables I ate, the carbohydrate cravings worsened. Books can be so confusing. There are calories, carbohydrates, good and bad fats, good and bad sugars, sugar free foods that are worse than eating all the bad stuff.
So many of us have made the journey, and have emerged stronger and more healthy than before. I first stopped listening to anyone but my own body. My body does not like fried foods. Fried foods made my body feel heavy and made it so hard to concentrate.
Lean in food makes you lean in body. I am still working on this one. Shopping became a game. Could I make a dinner that tasted good but didn't have all the fats and calories in it? Could I actually eat a baked potato and not go through butter and sour cream withdrawal?
Like a chess game, I stalked good health like it was a competition. I needed to eat more fruit and veggies but, seriously, can a body eat 6 carrots and several pieces of fruit in one day? More wonderful people came forward with ideas on how to get more nutrition into my body with a minimum of fuss. Juicing. Liquid food? Like V8, right?? Nope, they showed me how to take fruit and vegetables to make a really tasty concoction of health that I still use today.
When I discovered that I had prednisone induced cataract, I started juicing 6 carrots a day. Finding that I was anemic, I added beets to my juice. Celery aids in lowering blood pressure and a nice potato for potassium joined the mix. I add apples for taste and toss in yummy stuff like strawberries or cantaloupe to add spice.
If my lungs are acting up, adding fresh spinach adds a natural green to help the immune system get back on track. Discovering that garlic soup with ginger could clear up my chest congestion, surprised me every time. What, no antibiotics? I was beginning to learn.
Pills do not cure, they minimize the effects of disease. I need the disease modifying drugs to stay alive and well, but I do everything I can to keep the medications to a minimum. My prescribed medications are only part of my arsenal. I use vitamins and minerals, EPA fish oils, and glucosamine sulfate because I have experimented and learned what is right for me.
Not listening to others enabled me to find my own path and use only what helps and eliminate what makes me worse. Like dairy. My body does not like anything dairy except yogurt. I use yogurt to calm my mouth thrush and use it as a "sweet" thing when I just crave something naughty.
Cooking with Lupus is never an easy propostition. But it can be really fun. You, pitted again hard steel and fresh vegetables - where else can you have this much fun?? Come and see food and fun come together in harmony and tasty concoctions. At Lupus NewsLog Wolf Bytes, I'm sharing my recipes that I use on a regular basis. Low fat, but full in flavor. Whole grains, fresh vegetables and lots of laughter. It's a receipe that everybody can enjoy.
I love life. Period. I am still the irreverent crazy person I was eight years ago, just a little more wary, but still just as wacky. I still work full time and sometimes forget that 40 hours is enough. The craving for chocolate has not gone away, but I have mastered it. I don't buy any, so I can't eat it! Laugh EVERY day. Even if it is a little chuckle - do it. Life is way too serious.
God has been a big part of my life, as has been my husband. God gave him to me to keep me humble and be my ardent supporter. Someone to lean on is a great help. You don't have to keep any burden alone. Sharing lightens the load. Join a support group and get moving.
Walking is free. You don't have to walk a marathon. Park your car two spaces further away from the store. Then three, and so on. It helps. I have lost 75 of the 102 I originally gained and have cut my prednisone level to 10 mg a day. I walk more and smell the roses as often as I can. I love to feed the ducks and just sit and watch the water on the little lake we have near where I live.
I am a Lupus survivor and I will continue to do so. Do I have bad days??? Yep. Do I let them pull me down? Sometimes, gosh - I am human, too. I just don't stay down too long anymore. There are always more roses to smell and ducks that are hungry.
©2004 Chris Cox
Diagnosed 9 years
E-mail
John - Rewriting the Story of The Big Bad Wolf
Many folks who work with us do not have lupus but they're as dedicated to easing pain, raising awareness and finding a cure as those who do. John O'Connor is the editor/publisher of one of the most respected lupus newsletters in our global community and a great ally.
I edit and publish The Lupus Sundial, a quarterly newsletter of the Marcy Zitron Chapter (LFA) in Central Ohio. My friend Shar has been asking me for a few weeks to write something about myself for her lupus 'blog', so I'm finally getting around to it. I took up the editing job on the newsletter in late 2002, after browsing an internet 'volunteer' site and finding the request for an editor.
I had proof-read and printed a bi-weekly bulletin for a local Kiwanis club a few years back, and still had the 'itch' to do informal publishing. My dad was a printer and proof reader for a couple of Indianapolis newspapers for over 40 years, so whether I was conscious of it or not, I had a lot of exposure to the craft from way back.
One of the most rewarding things about doing the newsletter is the support and encouragement I get from the officers of the chapter. From the first, President Dolly Harmon and Treasurer Deb Hutchison told me to use my own instincts regarding content, as long as I could keep the information readable for the lay person.
That's not always possible, given the rather technical/medical terms that accompany lupus, or any disease, but there are still lots of ways to keep some of the 'med-speak' to a minimum. There's always a good 'human interest' story out there, which is what I try to include in every issue of the newsletter.
I don't suffer from lupus personally, so I can't impress anyone with how I manage to work a full-time (3rd shift) job as a computer techie, help raise a couple of teenagers, and squeeze in a newsletter four times a year. My son Matt is about ready to graduate from Ball State with degrees in Sports Management and Wellness Management. My other 2 kids are Steve, 18 years old and Emily , who is 15.
As I mentioned, the opportunity to do the newsletter made itself available at just the right time for me, and I get a lot of enjoyment from the different tasks that go into putting it together. As maligned as the internet may be, it is the main source of my articles, and I'm very glad to have the variety to choose from. I've found that authors of all sorts of lupus-related articles are more than happy to allow me to reprint their work for our local audience.
Finding the articles, contacting the authors, getting approval to reprint, and filling out the newsletter with my own personal touch (a 'today-in-history' two-month calendar and a 'home-grown' crossword puzzle) takes up most of the time in between publication dates. There's ususally a few very specific announcements to include with each issue, so I try to give the chapter officers plenty of time to get me that kind of info each quarter.
In just the first year of doing the newsletter, I've gotten to correspond with book authors, dedicated doctors and medical researchers from numerous universities around the United States, and even a Hollywood celebrity! Another wonderful 'lupie' acquaintance of mine is Shar Phoenix, a very talented writer who has her own touch of 'glitz-n-glam' and an amazing way with words. Finding her musings on lupus in various spots on the internet has been a real treat, and I'm hoping to make abundant use of her talents in the future by 'borrowing' articles and stories by her and other 'blog' submitters.
One of the nice things about the physical creation of the Sundial is the help that is provided by a dedicated class of middle-school kids in my town (on the north side of Columbus). After getting my final copy to the printer, the unbound editions are then delivered to the class for 'assembly' and addressing. Once that is done, which is no small feat, one of the teachers gets the 400-plus newsletters to the post office for bulk mailing.
I don't know how many of you may have had a 'bulk mail' experience, but I tried it once on my own last summer, and I don't plan to repeat the process again in this lifetime! The thing that most sticks in my mind was trying to get labels on the plastic and cardboard tubs while standing on the floor of a post office loading area. The day I took the newsletters in for final sorting and mailing, we had a tornado or two in the area, and all the bay doors on the loading dock were shut tight, thus providing me with a constant 9o-plus degree work environment.
After an hour or so of this experience, I left my latest editions with a courteous (disinterested?) postal 'liaison', hoping they would be on their way to chapter members by that night. Of course the next morning I was called by another 'liaison' and informed that my tubs were over-stuffed, and I would have to break my shipment down into more manageable packets. I finally ended up coercing my wife and kids into the family 'project' of addressing and stuffing envelopes with the newsletters, in the end paying close to one dollar per issue to mail them first class! Needless to say, I have nothing but pure respect for the dedicated middle-school class and their teachers for handling this task each quarter (at much less than $1.00 per copy!)
One of my goals as the newsletter editor is to get to know some of the other chapter newsletter folks around the country (whether LFA-associated or not.) I haven't had the time to really approach anyone directly, but many of the newsletters from different regions are sent to our local office, and we reciprocate by sending at least one copy to most of the current chapters of LFA.
As time goes on, I hope to be able to share some ideas with other editors, in order to help us all come up with the most informative newsletters that we can. Unfortunately, it looks like I'll have a job in the lupus information biz for the forseeable future. It's my hope that the continuation of efforts like mine and other info 'disseminator's will somehow be part of the equation that eventually provides a lupus cure.
©2004 John O'Connor
Sheila - She is Still Here
(Sheila has endured the terrible dark ages of this disease and, through her struggles and her grace, grown illuminating wisdom that guides her onward, lighting the path for others in pain.)
They saw the bruising, and the swollen glands, and thought it was Hodgkin's Disease or Leukemia, but the tests showed it was not.
She was 24.
They saw the loss of weight and the exhaustion And thought she was dieting excessively, but after weeks in hospital and twice daily weighing,
they knew she was not.
And when over the many months of tests and despite the fact she worked very hard between the frequent bad spells, they sent her away and told her she was attention seeking,
but she was not.
When she became confused, with headaches and bleeding and bruising they said she had a nervous breakdown and sectioned her to a psychiatric hospital and gave her Electro Convulsive Therapy. But then she got wise to their ways and never told them
of the pain.
They gave her medicine that rendered her unconscious, and put her in a room with no handle on the inside. They made her work in that hospital, polishing floors.
So she never complained again.
She also put the tablets under her tongue, and then spit them out when they left, so she started to recover. She saw the shame on her family's faces, and vowed never again
would she let them suffer.
They expected her to try suicide,
she expected to live her life.
She won, she was 26.
And through all the pain and the bleeding, and the swollen joints and painful muscles, through the loss of teeth and hair, their tests were inconclusive and they said it was her imagination.
She was 28.
Then in another town, a doctor sat on her hospital bed and told her all about SLE, the course of the disease, and the prognosis, which was poor. He told her the
'breakdown' had been a brain hemorrhage. Then he gave her advice, wished her well and bade her good bye.
She was 30.
Her dear, dear mother never knew what was happening, but loved her, then left her when she died suddenly....
She was 32
Her father in later years was told about Lupus, but closed his ears, for he didn't understand, and thought she should get on with things and not complain. He loved her dearly, but the doctors were always right.!! And they never agreed,
these doctors.
Some said yes to lupus, some said it was all in the mind. Her father died in '89. She went into a Nursing Home, they said she would die. She left the Nursing Home. She wouldn't die.!!
She was 47.
She had a 'slight' heart attack, and was introduced to another rheumatologist. She cared. She told her that 'Lupus' had been present since childhood. She had someone who believed her. At last.
She was 52
A very condensed story, but a familiar one to many sufferers of Lupus, it is the many faces of this illness. She is still here, despite being told her time on earth was nearly over many times.
She is now 58.
She is Dimples.
She is Sheila.
She is me.
©2001-2004 Sheila Brady
Shar - Living Beyond Acceptance
(This is my story, still unfolding, with the horizon ever extending before me. For all of us, there is more to come, more to learn and much more to discover. Break ou the bugles and kick up your heels; this parade rolls on forever.)
Exhilarating, terrifying and illuminating, this life is a crash collision course in Human Potential and I'm working my way through college, going for my Master's Degree. An eager student, I'm majoring in Mettle Crafting and minoring in Systemic Lupus Erythematosus (SLE), with the snappish Professor Wolf forever nipping at my heels.
Lupus, or the wolf, became namesake and totem of this complex autoimmune disease centuries ago when physicians compared its raw, red lesions to wolf bites. The butterfly was adopted, partly for the shape facial rashes may form but lesions and rashes are just two of this disease's countless perplexing symptoms. An adept mimic and master of disguise, this enigmatic illness keeps doctors guessing, while it lurks undetected in the shadows.
Research and medical training are finally refining their focus on this little-known, long neglected disease, playing catch-up with the wolf. Lupus so defies diagnosis that although some studies show about 6 million Americans alone have symptoms, at best, 1.5 million of them are on a first-name basis. Over half will see at least three doctors and wait a minimum of four years for diagnosis. Many, like me, will wait much longer, often as their lupus rages. Globally, it’s said 10 million people are diagnosed, while millions more seek help.
Our wolf runs with a large and rowdy pack. The American Autoimmune Related Diseases Association (
AARDA), claims lupus and at least 79 fellow syndromes. When this lupine canine crashes our party, he usually brings some of his kissing cousins, to chow down on the snacks - us. We're forced into a fox-trot with a very persistent partner and, my, what big feet this wolf has, as he tries to make us dance to his tune.
Ol' Wolfie has a taste for the ladies so about 9 times more women are bitten than men but men receive a mighty munch indeed. Those of us with predominately African ancestry get wolf-bit 3 times more than those of primarily Anglo-European descent. Folks with Mediterranean, Hispanic, Asian, Pacific Islander and Native American forebears get chewed on at a high rate, too. People like me, from multi-ethnic families, arouse this wolf's eclectic, gourmet appetite but children are his most tender morsels.
It seems the wolf was midwife at my birth, but my SLE first drew fiery breath when I was three. I was living in San Francisco's vibrant, multi-cultural wonderland, the Mission District. Just outside Grammy's victorian was the Miracle Mile, the liveliest international bazaar in the USA. Kiosks straddled sidewalks and a potpourri of goods spilled into our path. Vendors sold food, clothing, books, records, jewelry, furniture and previously unimagined essentials. A festival of cuisine, color, music and language, it was paradise to me.
Decades later, two doctors asked where I'd lived in 1950, and each one spun the same terror tale - I met this wolf at Grandma's house. That year, "Baghdad by the Bay" had attracted some unusual tourists. Word of US military biological warfare experiments on American communities began leaking in the early 1970's and these physicians had done their research. In 1977, during
Senate subcommittee hearings, the US military admitted deliberately causing infections and pneumonia, by spraying Serratia marcescens bacterium and other "harmless" agents into San Francisco's air.
(Wall Street Journal subscribers, will find
"Of Microbes and Mock Attacks: Years Ago, The Military Sprayed Germs on U.S. Cities by Jim Carlton, published October 22, 2001, now in the WSJ archive.)
While disease secretly prowled the city streets, we'd scurried back to the countryside but fever followed by penicillin injection ignited my SLE into bonfire, with my life at stake. Doses of tetracycline and sulfa morphed infections into superinfections. Allergies, nausea, stomach pains and digestive distress dwindled me down to starvation rations. I was small for my age, with severe growing pains and the palest face in my tribe. Puzzled doctors duly noted my "failure to thrive" as my lupus signaled SOS but nobody broke the code.
Like most country youngsters, I had chores to do, tending our big garden plot and large chicken flock. Home grown produce kept us and many of our neighbors fed. As rural families do, we traded eggs, vegetables, fruit, livestock and homemade preserves with dairy farmers and other industrious folks, for food we didn't raise and items or services we needed. Much of the food spread across our table made me ill but, with my SLE unknown, I was teased for being "picky".
The year of the chicken came, my fourth summer. I saw them hatch and held the downy, yellow, bright-eyed birds in my hands. We were near constant companions, since I met their needs all season. Being used to farming cycles themselves, nobody'd thought to tell me that fowl weren't friends and these would all be gone, in one sky blue and scarlet morning. Shocked by the axe, the chopping block and the screams - the hens' and mine - I turned vegan on the bloody spot.
My heart may have been rightly placed but my stomach was completely out of line. It flipped and flopped, doing inside-out somersaults, no matter what I ate. I couldn't digest most vegetables raw, stewed, fried or marinated and those were the only choices on our family menu. I didn't want to eat meat, which my body couldn't process anyway and fruit often gave me intense, vise-like cramps. I heard it said I'd "never make old bones."
As my innards grew more rebellious, my diet more restrictive, I lived on whatever behaved best and left without undue ruckus. I nibbled saltines, tortillas, canned tuna, sunflower seeds, almonds, walnuts, apples, berries, lettuce and carrots. I drank chocolate milk that was mostly sugar and cocoa, which sedated the hostile sentries stationed along my digestive tract. Deer hung, bleeding-out, from the cottonwood tree, as I tended a garden I couldn't eat and animals I wouldn't, if I could have.
At harvest's end, neighboring farmers drove up and down our roads in trucks full of fresh surplus produce, free for all. Children climbed over truck sides, handing nature's beauties down into waiting arms. There were green striped watermelons, sun bright pumpkins, velvety peaches and apricots and juicy plums. Folks shared their bounty, filling canning jars, freezers and pantries for the leaner months ahead. My stomach rebelled at most of these riches but blackberries and strawberries clambered over fences and into my grateful tummy.
As my symptoms progressed, I coped quietly, working summers and part-time throughout school. Mine was a big family and most country kids were expected to do their part. On my own time, I'd read and write, ride mustangs, motorcycles and hike miles for pure pleasure. Other days, I couldn't walk across the room and some, I'd sink into sudden puddles, without a muscle to hold me up. Doctors ran tests, filled me with antibiotics, scratched their heads, patted mine and passed me on to the next physician.
Then, right after my twentieth birthday, I hemorrhaged into unconsciousness and woke to find a wall of white coats surrounding my hospital bed. When I quipped, "Who's taking care of all the other patients?” the wall stood still, stunned silent. I'd unexpectedly awakened from a deep coma. Having tried everything but exorcism, those shocky docs had decided my demise was a done deal.
My medical options shrank to surgery every 3 to 4 months or death - do not pass Go, do not collect $200, do not make plans that don't include bedpans. Being a good patient with a strong survival streak, I complied but each unkind cut nearly did me in. Every medication created more problems than it solved and more complications arose, until the search for a magic bullet became a game of medical Russian Roulette.
Advocating for others while coping with my SLE, I've seen flesh and blood people fade into invisibility as they step over medical thresholds. Many medicos are skilled and sensitive but some visitors to my body behaved as if they owned it, knocked me cold and ransacked the place. Any illness can be aggravated by those who view us as lab rats, to be seen, poked, prodded and bled but not heard.
Dr. Jerry, the best of them all, admitted, "Medical science has reached the point where we can do you a great deal of harm but not the point where we can necessarily repair the damage." He'd seen me rally against stacked odds time and again and he’d always acted with intelligent care and compassionate dignity.
Unable to decrypt the lupus enigma, a slew of specialists agreed I was beyond hope, so at the ripe young age of twenty-six, I was left to rot at the bottom of the veggie bin. Doctors who'd called my continuous rebounds miraculous didn't wait around for my resurrection. They'd surrendered but I'd survived the unsurvivable and like a reprieved fish, released from the hook, I wriggled back into the flowing stream of life.
Science may have been stymied by my lupus but I couldn’t afford to give up. My wolf went so wild that he finally blew his own cover and we cracked the case. According to the American College of Rheumatology, there are 11 clinical criteria for SLE, with only four positives needed for diagnosis but, lucky me, I've had 'em all. With my secret nemesis unmasked, a rabid werewolf was revealed and, making the sign of the cross, doctors boarded up their buildings.
After years of misdiagnosis, multiple complications and cycling medical traumas, I was in constant, excruciating lupus flare. Between surgeries, I'd done college and worked in classrooms, libraries, nursing homes, canneries and newsrooms. With my unpredictable, uninsurable health, adaptation became a well-honed survival tool. Then, Ol' Wolfie banged my brain, with the first in a series of strokes that would challenge all my resources.
Once blessed with a near photographic memory, suddenly I couldn't remember my birthdate, address or phone number. I didn't know left from right, couldn't decipher written words or numbers and lost my place while counting to ten on my fingers. It seemed that common sense and science had mutually decreed that woe was me and that was that but, too stubborn to slip into a shroud, I set out to save my life.
Left to my own devices, I devised my own physical therapy. Prayerfully, meditatively, doing breathing exercises, feeling oxygenation blessing my anatomy cell by cell, I befriended my battered body. Exercising isometrically by gently contracting, holding, then releasing one indifferent muscle at a time, I nudged my body to awaken, remember and respond.
Soon, I could drag myself off the bed and across the floor toward the bathroom - my aversion to bedpans was a great little motivator. One twenty-foot round trip was an all day excursion, with frequent breathing spells, as I re-educated my legs and feet on their roles in this forgotten routine.
With primers, notepads and pencils stashed along my route, I spent my downtime studying readin', writin' 'n 'rithmetic. Stretching my mind and flexing my fingers in the language of the deaf, I sparked remembrance and synapses as I slowly reconnected the scattered dots that star-crossed my shattered memory.
After each brainquake, I dug out from the cranial avalanche, working my way through the wreckage, rising ragged from the ruins. Gradually, I built enough strength to grab the furniture in case my legs fell down on the job and I dragged myself up. From sliding shuffles to baby steps, I slowly began to walk again. I fainted often, gone like a flash in mid-step, fracturing my foot, toes, tailbone, fingers, ribs and nose, on the trek to win my life back.
Zealous to save me from an unknown adversary, doctors had gone ballistic, emptying armories into me, in biochemical warfare. Stewed, simmered and basted in a caustic brew, I was so toxic, mosquitos preferred to bite each other. Pickled and pixilated, I slowly detoxed, drinking pure spring water and enriched juices, nutritious broths and purees.
I progressed anew after every stroke but without medication to baffle my banshee, walking was painful, exhausting and downright dangerous. The whole world was bustling right outside my door and I wouldn’t let the parade pass me by. An electric wheelchair became a silver skyrocket and my round-trip ticket to ride. Donning my brightest duds and my biggest smile, I'd slip on my kneeboots, hike up my attitude and cruise the crowd.
Sitting staunch, in feathered beret and bright plumage, I encouraged friendly grins and most folks were fine as I whirled by. Still, most wheelchair junkies - strung out on steel - didn't circulate much then and I nudged some preconceived notions. There were one or two loose wheels who tried to climb the chair, a couple who climbed the store displays and some who were out of uniform until their brownshirts came back from the cleaners.
In my travels, I made new friends among folks on heels and those on wheels and, standing up or sitting down, we met on even ground. Riding my chariot with eyes wide open, I learned more of human nature, our secret fears and our hidden strengths, than equal footing could have taught. As I kept stretching, rediscovering and rebuilding my being, with my brain busily rewiring enroute, "Appreciation" became my mantra and this simple prayer still permeates my life.
Lupus is a changeling, unique in each of us, making individual self-defense creative and diverse. My remedies include an organic plant-based diet, herbs, NSAIDs, music, books, comedies, caring family, good friends, compassionate caregiving, the finest of physicians who is also my true friend and my useful lupus work . My transfigured SLE is now more Jekyll than Hyde but I'm not the anomaly doctors once believed - I'm just one of the often uncounted and usually unheard.
Scientifically, lupus and its fellow autoimmune diseases are linked partly to our inherited genes and greatly to our environment. Many of us can trace them through our lineage and they twine my family tree like kudzu. It seems a combination of ancestry, surrounding conditions, misdiagnosis and not-so-divine top-secret intervention has kept the wolf at my door.
Because my SLE is antagonistic and easily incited into flare, I must be very cautious about exposure to others. This wily werewolf's alienated any family and friends who just don't get it and can't take it impersonally. From childhood, I'd been a rescue rider for my family and, between blazing flares, I helped care for my mother and my diabetic sister before their deaths.
My sister and I were toddlers when she lost most of her hearing to fever, tangling her lines of communication. Sis's accented speech was as difficult for hearing people to understand as their hushed mouthings were to her. She became shy when unsure of others but we were very close. Sis loved music so I sang for her and when she mastered American Sign Language, she taught me and we sang together, with flashing fingers and soaring spirits. Years later, diabetes took her life. In tribute, I've written of her in
On Butterfly Wings. At twelve, I began working half school days as a teaching assistant for children and adults with developmental challenges, including Down Syndrome. I felt tiny as a mouse and less equipped to instruct but little by little, I grew, with Sis and my students as mentors. I learned early on that focusing on assumed limitations doesn't just sell others short; it keeps us short of the awareness it takes to get past that dehumanizing concept.
This disease has the power to transform my bones into spun glass, shrivel my kidneys and conjure my fingers into claws. This cunning conniver can turn the tooth fairy against me, drum on my lungs, stroke my brain and play hearts tournaments in my chest. The Big Bad Wolf's been huffing and puffing up howling hurricanes for over fifty years but he still hasn't blown my life down.
Lupus hasn't strangled my sense of self or crippled my ability to lead a worthy life. I don't waste my life weeping over past losses or dreading the future - surviving with regret would tarnish this gift I love exploring. I don't live my life inside self-imposed walls or even wholly within my body but within my potential, which can only be limited by my ability to envision life on a deeper level and my determination to follow through. So, yes, I've got lupus, but it ain't got me.
I feel kinship with concentration camp captives and prisoners of war who've survived confinement, isolation and torture to emerge with expanded appreciation of life. Nelson Mandela lived so fully beyond his over twenty-seven years in prison as to become President of South Africa, leading his embattled country beyond apartheid. By reconnecting to life in a deeper, broader, more dimensioned mentality, he developed a stronger connection to all life and a definitive realization of purpose.
For me, life well and truly lived ultimately has less to do with the space we occupy or the mobility of our bodies than it has to do with what occupies us and the mobility of our minds and spirits. I agree with the imprisoned poet John Donne, who said, "Be thine own palace, or the world's thy jail." Physicality can't cripple us so totally as mentality surely will. Life may demand more of us than we wish to contribute but if we can increase our courage, expand our minds and extend our grasp, we can accomplish far more than we imagine and become much more than we ever were.
I dig up research, translate medical mumbo-jumbo into ordinary english and write it up, while the wary wolf catnaps, one eye cocked, at the foot of my bed. With my cats curled up beside me. I investigate and share information that can help people with lupus or other autoimmune diseases, those who love them and folks who want to avoid those illnesses.
In my work and throughout our online community, good friends and kindred spirits inspire and invigorate me. We're resilient strivers determined to thrive. Together, we're changing the world's awareness of lupus and chronic illness. The
friends who share their stories here face the hazards of their own lives with heroism and humor. They didn't see a winning hand in the cards they were dealt so they reshuffled and now, despite the joker in the deck, they're coming up with aces. Every day, they carve courage from their rocky roads and blaze trails through unknown territory, that others may follow. I am truly honored by the company I keep.
Once we lupies were cloistered, alone with our secret shadow, the insatiable wolf. Our medical care was comprised of guesswork, stitched into patchwork, bound by superstition. Our treatment, if any, was based solely on which symptoms waylaid us at the time. Many doctors lost hope and threw us to the wolves. Once, most of us died very young. My grandmother's twin, who had SLE and diabetes, died when she was only nineteen.
In our Dark Ages, doctors were blindfolded by a lack of research and training, their ears plugged with dogma. Now, "orphan" diseases, including lupus, are studied internationally. The blindfolds are coming off and our voices are being heard. The times are changing and we are catalyst to that change. We healthcare warriors represent a new gathering of the tribes and the threads we string together online weave our safety net.
In 1808, Tecumseh, who was philosopher, leader and spiritual mentor of the Shawnee Nation, advised his people, "So live your life that the fear of death can never enter your heart--- Love your life, perfect your life, beautify all things in your life. Seek to make your life long and its purpose in the service of your people". Nearly 200 years after "The Shooting Star" scattered these sage sparks, they still shimmer with insight.
This work is so stimulating, clarifying and soul satisfying that it makes my journey, lupus and all, a pilgrim's progress. Learning and growing beyond presumed barriers to surmount the supposed limitations of this illness and being able to use this experience for the good of others is, for me and for my friends, a transcendent fulfillment of purpose.
Much like Mark Twain's, my death wasn't so predictable, after all. Somebody must've dropped the crystal ball. By now, I've outlasted the doctors who'd held the portal, expecting me to exit first. After over 30 years with zero life expectancy, I endure. Science is still learning and so are we, discovering possibilities in our world, ourselves and in each other that we never knew existed.
I don't relate to life in terms of restrictions but in terms of creating or recreating options and exceeding preconceived grasp. It hasn't occurred to me in years that my life is less than it might be - it's just different than I'd expected. My life is my gift and my responsibility, progressing as far, as dimensionally, as my imagination and determination can reach.
© Shar Phoenix
©Shar Phoenix, Lupus NewsLog.
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