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I invite you to “Barbi’s Field”! At times the terrain is rough but, hold on we do have HOPE. I am thirty two years old and for the most part have lived a normal, active life. Five and a half years ago my normal, active life received a “kick in the pants” and came to a screeching halt. I was diagnosed with SYSTEMIC LUPUS ERYTHEMATOSUS. Four and a half years later and it is still “kicking” because of lack of funds for awareness, education, research and FDA approved drugs specifically for Lupus. We waited 52 years for an FDA approved treatment and I thank you GlaxoSmithKline for being a fore runner in the pharmaceutical world and giving us Benylasta.
Can you imagine the frustration for the doctors and patients because once diagnosed you being a trial and error with one of the many “cocktails” for Lupus treatment. Unfortunately, for most Lupus patients the treatment has been as bad as or sometimes worse than the disease. But we still see HOPE!
I am one of the luckier ones; my doctor recognized right away what she suspected to be Lupus and ordered the appropriate tests. Some people have had it for 20 or more years and were just recently diagnosed.
I was in my “initial flare” for twelve months. Then the battle began with adjusting to the medications, again a trial and error basis. My symptoms started with a rash that literally peeled the skin off my hands, then the “butterfly” rash that covered my face. Just weeks before I experienced extreme fatigue and an achy body that found no relief regardless of my medication. My joints…especially my hips throbbed. In less than a week the hair loss started. Seizures, short-term memory loss and the blistering rash covering 90% of my body followed in a matter of days. A biopsy confirmed the rash to be DISCOID LUPUS. A Bone Density Scan revealed I am borderline Osteopenia/Osteoporosis. My bones are more like a 60 year old than a 33 year old. I also have Fibromyalgia, IBS, Celiacs Disease, Graves Disease and most recent Chronic Lupus Pericarditis. This is “just the norm” for a LUPUS patient.
To say a chronic disease such as LUPUS is life altering is an understatement! It is life consuming…it has taken the life I once knew. I am now trying to find how to fit in “my new life” and learn to respect each day. My mantra is “Pace Yourself”.
I have always been active, energetic, and athletic; I love the outdoors and have participated in sports since I was five years old…soccer, softball, track, swim team, even football on a high school level. I was the first female football player for Mount Airy High School. My senior year I ranked 7th out of 400 high school place kickers. I won the Governor’s Award for Women in Sports in 1997 for my football participation. Now that was a battle in male gender dominated field!
I know how to fight for something that is important to me…something worth fighting for…and I don’t even mind the fight. I welcome the challenge; even
more so since my son Corbin was born in 2009. Life…even the smallest of things have become big things. If you could see my Corbin you would understand when I say…the fight is so worth it, everyday with him is my gift. On my worst day, he makes it worth pushing on as I get out of bed and get us ready for the day.
So you see, my fight has changed fields and my challenge is every breathing moment. I now fight to maintain a “decent quality of life”, to get out of bed every day, to conquer the flight of 14 steps to my bedroom, knowing some nights I will sleep on the couch because I can’t make it to the top. I fight to stay up most of the day only taking short naps, to keep the hair I have left by only washing it every 3 or 4 days and taking care of my scalp. Thank goodness for hair extensions! I fight to control my skin rashes by staying out of the sun, showering in cool water and “patting” dry…not bathing in a tub of warm bubbly water. Do you know how lucky you are to be able to sink down in the warm water and not come out with blisters? I fight to remember simple things, like…have I talked with my family today or did I have an appointment today-by challenging myself with Sudoku and crossword puzzles. I fight to manage the LUPUS by taking the only medications available, which cause side effects that are as bad as the LUPUS. I fight for some balance in my life, for relief from the pain, for the opportunity to be a good mom and be sure Corbin realizes how much he is loved. I fight to hold on to my dignity and to remember I am worthy. I fight…everyday.
The cycle of a LUPUS patient is endless…you present with a symptom; you are treated usually with drugs FDA approved for another disease. Before you become “normal”…whatever that is, the cycle starts again and a new symptom arises and the cycle begins anew. However, the new symptom does not replace the previous one…just adds to it.
A LUPUS patient should not have to choose between washing your hair or cooking a meal, taking a cool shower or grocery shopping, visiting your family or cleaning just one room in your house. The extreme fatigue restricts your activity and you must learn to pace yourself…otherwise, you will pay dearly for it and the next three or four days will be spent in bed with pain from your head to your toes. You may see me in the community or tonight even and say, “But you don’t look sick”…you just don’t know how hard it was to get ready and how much preparation beforehand I must take into consideration before going outside my door.
I was in a clinical trial study at Duke Medical Hospital receiving an infusion treatment every four weeks. I was thrilled with my exceptional results! This treatment had eliminated a few of the “cocktails” from daily regiment and I had more energy. My prayer was is FDA APPROVAL so others would have hope! Unfortunantley, due to lack of funding this trial was cut and I had to go 10 months with no meds. This put me back where I was when I was first diagnosed. I am now in a new clinical trial at Duke Medical Hospital receiving an infusion treatment once a week for five weeks, off three weeks, go one week, off three weeks, go one week, off three weeks, and then the cycle starts all over.
After finding the right doctor and treatment, SUPPORT is critical to a LUPUS patient. Loving, caring support and understanding are key in keeping your ”flares” under control. Unfortunately, my husband never understood how desperately I needed his support almost as much as I needed my treatment. Friendships are also hard to maintain because regardless of your good intentions, sometimes a LUPUS patient has to change plans at the last minutes. My marriage ended in divorce and sadly to say many friendships ended because they “just didn’t understand”. LUPUS steals many of those “little things” that are taken for granted. Besides dealing with the disease, lack of treatment and drug side-effects, you lose your self-esteem and loneliness becomes too familiar.
But God never closes one door without opening another. Now, I have a strong, courageous support team of my family, understanding friends, brilliant doctors and the North Carolina Lupus Chapter. Every day they help me meet the challenge ahead of me.
The treatment for a chronic disease such as LUPUS should not be as bad as or worse than the disease itself. Lack of funds and education has left the doctors with limited knowledge about testing, signs, symptoms and early diagnostic tools. Your support helped with this and gives us HOPE.
On the football field I learned early on to stay out of the penalty zone, watch for pass interference, and avoid those blocks…LUPUS should not place me in a permanent penalty zone for LIFE, blocking me from living without taking horrible treatments and interfering with my ability to embrace life.
I am ready for the challenge and fight ahead of me to improve my quality of life. I am an active activist for the National Lupus Foundation of America. I have participated in Lupus Advocacy day in Washington, DC, speaking to our Congress on the effects of LUPUS and requesting increased funding for research, education and support for the 2 million people suffering from LUPUS. With the help of family, friends and Christine I have hosted two "Mayberry’s Butterfly Walk for Lupus" walks and have raised over $25,000.00…and don’t forget to mark your calendars for this year’s walk on August 24th at Mount Airy High School football Stadium. So you see, I truly am ready for the challenge but I do need help on my Lupus battlefield. Your attendance at these walks give me and the 2 million Lupus patients HOPE. So suit up, grab your helmet because Lupus will not have me.
We have to find the cause…we have to find the CURE…we have to FIGHT!!!