Lupus NewsLog Thrivers

"I do not allow myself to be overcome by hopelessness, no matter how tough the situation. I believe that if you just do your little bit without thinking of the bigness of what you stand against, if you turn to the enlargement of your own capacities, just that in itself creates new potential." Vandana Shiva, Activist and Author.

Lupus NewsLog's Thrivers' Mission
In Sanskrit, there is a character which translates into obstacle or opportunity, depending on how it's read. Lupus can be the wolf that brings us down or our springboard to leap into life. Those who share their stories here will not accept defeat - they strive to thrive. This disease is so little-known that, without the power in their words, the wolf would strike in silence.They utilize their own challenges to contribute their hard-won wisdom and strengths to our community and to help others recreate their lives.
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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.

©Shar Phoenix, Lupus NewsLog. Article reprints are available upon request. Contributing writers retain their own copyrights. All Lupus NewsLog sites and pages offer research based information to assist in understanding lupus and in self-advocacy. Content here, on sister sites or in email response is not a substitute for medical advice or treatment. Consult a qualified physician for medical attention.