March 13, 2013
Guest Blog: Sunny With a High Chance of Happy Tears
I can so clearly remember the excitement one Friday afternoon when the elderly community that my mother-in-law lived in finally got added to the city bus line. There were balloons, food, music and the press was there to cover the excitement. The battle was not an easy one. The fight had been going on for years, and it was met with the proper amount of tears when the elderly residents loaded onto the little bus, with city representatives, and were taken on the commemorative route.
These same feelings are stirring in me this week as the Help Us Solve the Cruel Mystery Tour bus is making its way into town. It is not coming to give me a ride and increase my independence, it is more than that. I have been living with lupus for over 26 years and the journey has been a roller coaster of emotions. When I was first diagnosed it was frustration. How could I be so sick and no one know what was happening? This moved quickly into fear when I got the diagnosis of lupus, and started reading what I was actually dealing with; and accelerated into horror when I was spending more time in the hospital than at home with my family. The amount of medicine I had to take to keep me “well” was baffling. I was taking these drugs to help calm the lupus and its piggyback diseases. All of a sudden I was getting major side effects from the drugs that were supposed to help me. This is when confusion set in. What is this cruel disease that has taken over not only my life but that of my family?
I reached out to the lupus community, became a support group leader online, and joined the Lupus Foundation of America, DC/MD/VA Chapter. I had to do something to help people in my same situation; especially those going through those first terrible years. I work health fairs hoping to catch the person with all the symptoms that just doesn’t have the doctor that has yet put them together. I raise money for the Walk to End Lupus Now so that we can support research for this disease that we so desperately need. I advocate for funding for lupus from our government both here in Virginia and in D.C., and I spend hours on the computer with people in need each week.
This week I am eager, eager for this big purple bus to arrive, this bus that holds within it all the mystery of lupus that I find so hard to make people understand. I want people to visit and learn what living with lupus is like. I want the general public to know my disease. It is important to me, I so want it to be important to them. I want patients with lupus to come to the bus and see that this bus is for us, that we deserve to be heard. I want everyone to come sign the petition for Congress to set aside funding for research for lupus. My emotional forecast for March 14-16th when the bus is in town: sunny with a high chance of happy tears!
Michelle Shuman is an active volunteer with the Lupus Foundation of America, DC/Maryland/Virginia Chapter. She resides in Richmond, VA.
Labels: Cruel Mystery Tour