I thought maybe I should write a little bit about Lupus so that people who visit my blog understand what it is that “we” the lupus community deal with on a daily basis. First and foremost Lupus is not a contagious or sexually transmitted disease. It cannot be spread from person to person. And, even though a lot of people believe it has to be genetic in nature that is not always the case.
Lupus is an autoimmune disease. It affects just about every part of the body but it affects every person who has it differently. No two people have the same problems. It can be fatal. It can destroy your life. It can destroy relationships. It is very misunderstood. But, it can be fought, and it can be lived through.
I want to tell you my major issues and my fight because it is not the same as everyone else’s. Hopefully this will generate conversation on my blog and others about how people are affected. Perhaps we who have it, and those around us who are our support system will begin to talk more openly and the exposure that Lupus needs to have will begin to happen. I’m tired. 95% of my life is spent tired. I have to fight my way through fatigue all day long most days. There is no cure for that. I hurt. My joints, back, often my skin hurts. Sometimes the pain seems unbearable. Most times the smile I wear is purely acting. (Did I mention I am an oscar worthy actress??) My kidneys don’t function the way they should. I am basically allergic to the sun…yes I live in Phoenix AZ one of the hottest places on the planet. The summer for me is brutal. I don’t get to spend a lot of time with my family at the pool, or water parks during the summer, yes there is an emmense amount of guilt involved in that. I break out in skin leisions. My hair falls out by the handfuls. Migraines are awful. They are dibilitating. Some days I vomit for no reason. I bleed when I urinate, and sometimes when I go poop….just what you wanted to hear right??? I have sjogrens syndrom which means i don’t create enough syliva…my mouth is almost always dry. I have rynauds which means my fingertips turn blue when i am cold. I have three blod clotting disorders. My lungs are not great and my heart isn’t so good either. But, if you were to see me in the mall, at the grocery store, in church, at a park, where ever, you would never think there was a thing wrong with me. that’s one of the hardest things about this disease. It just doesn’t show.
Because most of it you cant’ see people think I am lazy, or un motivated. People think I am a slacker or not willing to help out in certain areas. I am on disablility. Some would wonder why since I look completely capable of working. If only they knew that flourescent lights almost knock me out.
I can’t do things for my kids that I would like to do. I feel guilt for that. Depression is a constant friend and with that comes low self esteem and anxiety. Who would love someone with this kind of illness? I am on so many meds I have lost count.
However, I love life. I love my life. I love my husband, my kids, my grand kids and I believe in Gods amazing grace. I believe He is working through me with this disease for something greater then i know now. And I am growing each day. Every day is new.
If you have Lupus or know someone who does you are not alone. You are a champion. You are the best of the best. The strongest of the strong. You are a fighter…an everyday hero. You are in for the fight of your life…but….the best is yet to be!
As you can see from the pictures I have a very full and busy life. I love my family. They mean the world to me. I write for them…I love for them…I live for them…and I am here by grace!