I am from Mount Airy, North Carolina and my name is Barbi Manchester. I am thirty three years old and have lived a normal, active life. Five years ago my normal, active life received a “kick in the pants” and came to a screeching halt. I was diagnosed with systemic lupus erythematosusor or SLE. Five years later and it is still “kicking” because there have been no new FDA approved drug treatments for Lupus in 52 years, until March 2011.
Can you imagine the frustration for the doctors and patients because once you are diagnosed, it is trial and error. Unfortunately, for most Lupus patients the treatment is as bad as or sometimes worse than the disease.
I say I am one of the luckier ones; my doctor recognized right away what she suspected to be Lupus and ordered the appropriate tests. However, after positive test results on all the pathology and lab criteria required for an accurate diagnosis I was also told I had a life expectancy of seven years, which is not lucky. Still some people have it for 20 or more years and have just recently being 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 came the “butterfly” rash that covered my face. The achy body and a sense of extreme fatigue had started just weeks before the rashes. 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 is discoid lupus. A recent bone density can revealed I am borderline Osteopenia/Osteoporosis. My bones are more like a 50 year old than a 33 year old I also have fibromyalgia, IBS, Graves Disease, celiacs disease and most recently found 40% hearing loss and I am wearing hearing aids. And 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, 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.
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 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. Every day with that little boy 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 just changed fields and my challenge has become every breathing moment. I now fight to maintain a “decent quality of life”.
I fight to get out of bed every day. I fight 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. I fight to keep the hair I have left by only washing it every 3 or 4 days and taking care of my scalp. 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, or 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. I fight for relief from the pain. I fight 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. I fight 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 it, it just adds to it.
A lupus patient should not have to choose between washing your hair and 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 and say, “But you don’t look sick,” but 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.
National registers were not being consistently kept of Lupus diagnosis until recently. Therefore, the number of people suffering from Lupus was not accurately recorded. It is now known via the National Registry that over 2 million people have been clinical diagnosed with some form of Lupus. 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.
I can speak firsthand about the shortage of funds, research and diagnostic tools. I was in a clinical trial at Duke Medical Hospital receiving an infusion treatment every four weeks. The drug was in the second B stage of FDA approval but unfortunately didn’t meet the needed requirements and was terminated due to lack of funds. I was thrilled with my exceptional results in this trial and am devastated that I am back at square one. I had been able to eliminate most of my other medication and felt wonderful. I have now been off all meds with the exception of a low dose pain management drug for 60 days. I have 30 more days before I am eligible to be placed in a new clinical trial. My body feels like it did five years ago and I have made no progress in my treatment. My hope, my prayer is I will meet the requirements for the new clinical trial and it will at least get me back to where I was 90 days ago. I must hold on to my HOPE…hope for me and for others.
After you find the right doctor and adjust to the appropriate 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 minute. 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. But God never closes one door without opening another. Now, I have a strong, courageous support team of my family, understanding friends and brilliant doctors. Every day they help me meet the challenge ahead of me and conquer my new field.
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. I need your help in this fight to maintain some degree of dignity while managing the Lupus.
So grab you helmet, suit up and join me on the lipus battlefield, along with the 2 million Lupus patients who desperately need your support: financially, mentally, physically and spiritually. We have to find the cause…we have to find the CURE…we have to FIGHT!!! I may have Lupus, but it DOES NOT have me. Help me score the Touchdown of a Lifetime and find a CURE FOR LUPUS.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.