I was diagnosed with lupus some time in 2009. My initial thought was of sadness, fear, disbelief, helplessness, depression and ironically relief. By the time I was diagnosed, I had been through so much, and made so many adjustments; it was just the answer to the many unanswered questions. The process went on for years. Although, the first doctor I saw in the mid eighties suspected lupus.
Because I have several auto-immune conditions, 5 to be exact, my symptoms overlap and exacerbate one another. They include: brain fog, memory loss, headaches, migraines, depression, joint and muscle pain, overwhelming fatigue, insomnia, Gerds, skin rashes, ringing in the ears, tingling nerves, unexplained bruising, and dry eyes, mouth and skin. Before I was diagnosed, I drew a gingerbread man. This little man was covered from the top of his head to the bottom of his feet with innumerable issues.
I had to learn how to cope with lupus. A whole lot of prayer; paying attention to the signals that my body gives me; controlling stress; getting extra rest; moderate exercise; watching what I eat; regular yoga classes; taking my meds; keeping my doctor’s appointment; concentrating on helping others; wearing sunscreen, hats, long sleeves; and watching how much exposure I have to the sun.
Because, I was diagnosed with depression in 1979, I created a plan to control it. I only allow three days for my pity parties. It’s become essential to winning this battle. Not having the energy I use to have, and not knowing what to expect is the hardest part of this disease. Symptoms can change within the hour. This causes you to be apprehensive about making plans too far in advance. This can lead to battles with depression, not to mention the other emotional impact lupus has; like not knowing what to expect as I get older. Will I be able to take care of myself? Will I be a burden to my family? Will I have enough money for my medical care? And there is always the ongoing battle to fight depression.
I believe in God. I believe in His grace and mercy through my Savior, Jesus Christ. I believe that He will put no more on me than I can bear. I believe that the experiences we have in life are for the purpose of helping others. I’m always helped when I take the focus off of myself. Knowing there are others who need the benefit of my experience, helps me to move forward. I’m inspired to be a good example for others.
I am an active volunteer for the Lupus Foundation of America. I attend as many support groups as I can. I speak at health fairs. I raise money for research. I’m a volunteer for the Walk To End Lupus Now™ every year. And, I teach a monthly yoga class for the Lupus Foundation. During part of this tenure, I have donated my payment back to the “Patience Assistance Fund”.
My involvement with the Lupus Foundation has introduced me to some dynamic people. The staff at the Heartland Chapter is an amazing team that shows their dedication to promoting the awareness of the plight of those of us who live with this disease. We are supplied with updated reading materials. We are given opportunities throughout the year to participate in discussions with professionals of various genres to help us understand our disease and how to cope with it. And, more importantly, they always treat us with respect, kindness, and genuine concern.
Some ask me why I support the Lupus Foundation financially. Simply, it helps me to realize that I am doing something to help bring an end to this terrible disease. Fund raising represents “hope”. Hope for a cure; and I’m a part of that hope. Fundraising means fighting. I see myself as a warrior fighting the enemy, lupus. When fundraising I am doing something to help others, while helping myself. I have met many new friends who walk the same path and understand what I go through, and when we are together, we are one.
Last, but certainly not least, I know that the funds will be used to bring the dilemma of lupus to the national spotlight. It is our goal to see a response which promotes a level of awareness that will stir the consciousness of our nation to commit to finding a cure with a level of urgency never before seen towards this mysterious, devastating disease. When the funds we raise, are matched we see the benefits multiplied resulting in more help towards defeating this disease. So, donations are a must! This battle is not an easy one, but it is one that can be defeated. Our commitment to the fight is the answer to bringing about the demise of lupus.