I have several medical conditions, some quite unusual and poorly understood by most people. I always say that I hit some kind of really sick genetic lottery, so why can’t I win the real lottery? Anyone who has watched the news over the last several days has heard about ‘Lottery fever’. The very high Mega Millions jackpot from Tuesday night was $370 million and no one hit it, and now, the jackpot is estimated to be $540 million for Friday night. Wow-$½ billion is a whole lot of money. The lottery is like lightning striking, all chance.
I always associate my diagnosis of Lupus(Systemic Lupus Erythematosus) with ‘winning’ some kind of sick, sadistic and weird genetic lottery. This is a link to what Lupus is, for those unsure
http://open.salon.com/blog/libmomrn/2010/06/03/lupus_is .You have to understand, my father, aunt, uncle and 2 cousins all died from pulmonary fibrosis-an autoimmune disorder. My mother was diagnosed with discoid Lupus-the version of Lupus that affects the skin, only, and also vitiligo, an other autoimmune skin disease. My sister and I have spent our entire lives with severe allergies, eczema, and chronic GI issues-all autoimmune related. We are a virtual potpourri of autoimmune dysfunction. I am not looking for sympathy or pity, but maybe a little understanding of these diseases may help people be more tolerant and patient to what someone who suffers from it is up against on a daily basis.
First, my Lupus will not be like anyone else’s Lupus. There are no two cases alike. Some people have very mild symptoms, some people can have quite severe cases. Second, autoimmune disease is not cured by diet and exercise. Exercise can help keep joints mobile, and a balanced diet is important, but they are not cures for autoimmune disease. Third, autoimmune disease is not contagious, not AIDS or HIV, in fact it is the opposite. It is an immune system that is going into overdrive. I often tell people that it is like the old SPY vs. SPY cartoons in Mad magazine. There was a white spy and a black spy. They would do all of these awful, destructive things to each other and there was rarely a clear winner for any length of time. I say that is kind of what goes on in your body with an autoimmune disease. The body just mounts a defense against itself and in the process hurts good tissues and organs. Finally, autoimmune disease often has overlap with other autoimmune diseases. For instance, I also suffer from Sjogren’s Syndrome-in the news because Venus Williams was diagnosed with it. It causes mucus membranes to be dry and joints to be achy-oh and lots of FATIGUE. The dry mucus membranes have caused me to have several corneal abrasions in the last several years. I have to use artificial tears vigilantly, and be very quick to seek treatment at the first sign of any infection. It has also caused me to have problems swallowing. I sometimes have episodes choking. I have needed the Heimlich maneuver done on me, unfortunately at a luncheon for my son at his college. Embarrassing, yes, but it did save my life. I also have Raynaud’s Disease. This causes vasoconstriction of blood vessels, particularly in the hands and feet. My fingers, especially, turn white, then blue when cold. They can be cold for no reason. I have to run my hands under warm water quite a bit to return them to normal color, or rub them together, or I play Al Bundy and put my hands in the waistband of my pants to keep my hands warm. Did I mention they spasm when circulation returns? The spasms can be very painful. I also have Antiphospholipid Antibody Syndrome-a clotting disorder-also called Lupus anticoagulant. Many people can have this antibody, without having Lupus, itself. I suffered a miscarriage, stroke, severe anemia, bleeding issues, and still am having problems from this because I need to take Coumadin-an anticoagulant, but I am having bleeding episodes, so Coumadin would be dangerous until the bleeding is controlled. I feel like a ticking time bomb at times.
Overall, I get up every morning, get dressed, because as a kid, we were never allowed to stay in our pajamas, even when sick. So even when I feel like crap, I am up, dressed, with makeup on. Some people equate that with thinking that makes me not sick, or that I am faking my symptoms. It is really hard to justify to some people that because you managed to actually go to the grocery store that you are not sick. I have had some extended family members act as if I were milking my symptoms. I guess I am supposed to stay at home and just die?! Is the fact that I am still alive bothering some people? A trip to the store for me, by myself, is maybe 2 small bags, because that is all I can handle on my own. When someone has a chronic illness, maybe people should stop passing judgment and try walking in the other person’s shoes for a little just to see the daily struggles. Maybe other people should be really grateful that they were bypassed by this sadistic lottery!