When I was first dx I was told that I had about a 5 yr. life expectancy. For the first 3 yrs. my emotions had me on a horrible rollercoaster ride. Denial, Anger, Self Pity, Major Depression were everyday feelings for me. I didn't experience them one at a time, nope I experienced them all at the same time. It not only effected me, it effected my family as well.
It reached a state of emergency in my family when one of my sons turned to drugs and alcohol. He denied it, I denied it until it reared it's ugly little head one night in the form of a confrontation between him and I about him breaking his curfew for the hundredth time and he hurt me.
Because of the seriousness of my injuries the State took my son to court and I sat in the courtroom and listened to 3 State Psychiatrists testify that it was because of my Lupus and the dramatic changes that had happened emotionally and physically to me was his underlying reason for his drug and alcohol abuse. I took this very hard but I also credit the experience as my wake up call and the beginning of me making peace with God and my disease.
I started a chat room, called Lupus Support, on Talk City so I could make a connection with others to talk and support each other. I have made the most wonderful friends from all around the country because of chat, not only were these friends helping me but I was helping them too.
Suddenly I felt like I was not alone and that together we could make some changes in our lives and diseases.
For 3 yrs. I hosted "Lupie Reunions" where my online friends would drive or fly in and we'd spend the week-end handing out flyers and brochures about Lupus to people who attended the Horry County Museum Annual Quilt Show.
The moral to this story is that I cope with Living With Lupus by trying to spread the word and promote and educate people about this disease. If this disease is going to take my life then my friends and my family will know in their hearts that "Bethie Baby" gave it the old college try to help find a cause and find a cure so that our children, grandchildren and great grandchildren will not suffer so needlessly with this little known about disease.
My body may be broken but my spirit and my mind are still here and I will spend each and everyday of my life fighting with all I have to help US. We are in this fight together please don't ever forget that.
Since I originally wrote this personal message, many years ago, I have had another stroke which has left me with a dead leg and foot drop, twice I have flat lined in the E.R. but I'm still hanging in here, spreading the word about Lupus and doing whatever I can to help my fellow Lupus brothers and sisters in need. I've had many people tell me that this must be God's plan for me.
My marriage also ended which was and still is the hardest thing I have ever lived through in my entire life. As sick as I am, I just couldn't take one more day of screaming and yelling, being called all kinds of ugly names and told how worthless I was because I couldn't get out of bed anymore and work to support the family like most wives do.
I was hit and choked infront of friends and family if I dared to hide my pain pills from him. His reasoning was he needed them more than me because he worked all day and then had to come home and be a wife and do the housework.
For the very first time in my 41 yrs. of life I was arrested because he had been repeatedly breaking me down for months and making me cry by saying to me when he was drunk "Hurry up and die Bitch so me and the boys can get on with our lives". This one night he had me cornerd in the kitchen, physically standing on my toes so I couldn't move and get away from his face. He was screaming at me so hard his face was blood red and after he'd tell me to hurry up and die so he and my children could be happy.
He would make this sound in his throat and choke up and spit this awful mess in both my eyes. I snapped and I started slapping him as hard as I could. His skin is so thin from his heavy drinking that my nails made his face bleed so he dialed 911 and spent 45 mins demanding the officer arrest me. The officer told the judge this, when I went to court, so it was thrown out and the judge was about in tears because I was crying so hard, telling my story trying to defend myself. She could tell my heart and my soul was crushed, I didn't hire a lawyer, I didn't want a state appointed one, if they were going to put me in jail, it would of been a break from the abuse at home.
I then started doing some research and I was shocked to find out that the abuse/divorce rate of women with Lupus was 89.9%. I spoke with my own Dr. about this and because we are primarily young women in our childbearing years going through all these strange debilitating symptoms, taking massive amounts of steroids which make us gain weight, along with other strong medications, our husbands sometimes don't understand so they lash out at us with physical and emotional abuse or they walk out on us, which makes us flare and makes us sicker. I chose to walk out on Keith because he had me emotionally at a point to where I sat and stared at my pill bottles everynight and asked myself why I didn't take them and get away from his mouth? One night I called my eldest son and told him this and he came and picked me up and took me out of the house and I've not been back. I don't recommend this because he refuses to help me at all since I walked out on him, so life is hard as hell and being homeless has not been easy by no means.
This past Christmas I gave myself the best Christmas present I have ever received in my entire life. I gave myself the gift of love..... I mention this here, in hopes that maybe I might bring hope or inspiration to someone who just might need some right now.
Living with a chronic illness is tough under the best of circumstances but not many of us are blessed enough to have the "perfect conditions" for our illness, so we struggle along as best we can. Things that we could do without a second thought before are impossible now. Our memory is just "Gone With The Wind" on some days. Our joints ache, burn and swell. We either can't sleep or we sleep too much. We have an entire smorgasboard of illnesses to chose from on any given day to blame this or that pain on but the GREATEST AND MOST POWERFUL PAIN OF ALL IS THE PAIN THAT IS INFLICTED UPON US BY FAMILY AND FRIENDS AND LASTLY OURSELVES.
To me, I compared this pain to the chains and locks wrapped around Bob Marleys neck and body in Charles Dickens "Scrooge". I was weighted down by chains of hurt, abuse, betrayal, guilt, sorrow, pity, anger and loss. I was so sad and hurting so much this past holiday season as I sat alone self doubting myself and the decision I had made earlier in the year to walk out my front door with just the clothes on my back on my husband of 20 yrs. and our home. I was now openly, officially part of our statistic abuse rate of 89.9%, I had been a closet member for years with only my closest friends, family and my Rheumy knowing the true story of what went on in my home behind closed doors.
At one of my deepest, darkest blackest moments when I actually was sobbing so hard I had a towel hung over my head to weep into, I looked out the window and there stood one of my lupie friends!! It was unbelievable that she felt that morning, she told me, that something was wrong and she knew I needed a lupie hug. There's NOTHING better than a real live lupie hug.
As the days past my online lupie friends that knew I was alone, starting calling me on the phone. These acts of kindness helped give me the strength to stand back up on my two feet, dust the dirt off my britches and start yanking those chains off my neck as fast as I could!! I had to learn to love myself, to be truly happy and I wanted to be happy more than ANYTHING!!
It's not easy to be happy when you've been in abusive relationships within your own family, acquaintances and sometimes even people you meet online. Regardless of the circumstances you have to look at yourself in the mirror, straight through your own eyes to the pit of your soul, tell yourself that it's ok to be human, even though you can't control other people's actions you can control your own and you can love yourself and make yourself happy!!!! I don't think you can honestly be happy unless you do. I know I can honestly say "I have NEVER been happier in my life" and my Rheumy said that "he could not have written me a better prescription!!!"