Several of you already know this and many of you have asked. I am posting here and not on Facebook because only my friends read this and many of my "friends" on FB are really just acquaintances and I am just not ready for a big deal about this yet.
I have been diagnosed with Lupus and Chronic Epstein Barr Virus. The theory is that at some point in my life, I had mono or something in that virus family and the infection stayed active in my cells. I have never been diagnosed with mono, but it makes sense because I am so affectionate. Haha. That infection has caused the Lupus (in theory), which is obviously, at this point, incurable. Many, many people walk around with inactive Epstein Barr in their bodies, but for some reason, it just stayed active with me. This explains my hair loss, extreme fatigue, joint pain and other symptoms. I was diagnosed several weeks ago and have been to two different specialists and had the tests run and exams done multiple times. I am confident that the diagnosis is correct, but my immediate family is still in denial. I don't think any of us wants it to be true.
So, I wasn't ever going to write this blog entry, but I read a story on yahoo today about Lucy Vodder, the inspiration for the Beatles' "Lucy In The Sky With Diamonds." She died today at 46 from Lupus. She battled the disease for five years. FIVE YEARS. That's it. She was only 46 years old! After I read the article, I read the responses from the people below the story and saw many stories of those who had lost a loved one from this disease and honestly, I got scared. I have been scared this whole time. I don't think I am going to have a severe case of this disease and I don't believe that I am going to die in five years, but I also don't know what God has in store for me. When I hugged my babies tonight before they went to sleep, a little voice went off my head, "If you leave them in five years, will Lyla even remember you? Even if she does, will she remember this you or a disabled you that has Lupus?"
So, I keep having these conversations with God in my car when I am alone. I guess they are more like one sided shouting matches. I think that is okay - we are supposed to be conversational with Him, right? My faith has been shaken a lot this year, now more than ever. I have a hard time dragging myself out of bed and I am not afraid to say that my kids are what gets me to church. I am always glad to have gone, but my motivation level is lacking a bit. I keep thinking of those who have really had a struggle - those we walked for on Saturday, those who are going through daily struggles to just keep on living. I see myself as selfish for being angry about my diagnosis and I see myself as being weak.
Nevertheless, I am completely scared. I am anxious about what the future holds for my family and for my kids. I love them. I could live until I am 80 or I could live five years. I guess that is true no matter what, but there is something different when you know there is something inside you that could cause your death that is otherwise not in most other people.
I guess I am done venting. I don't need anything. I guess just some prayers - more for mental strength and spiritual strength than physical strength right now. I don't care who knows about the diagnosis, but I don't want people giving me pity eyes or avoiding me. I am still me, just me with Lupus. FYI - the Epstein Barr is not contagious and you can't get Lupus from me either. I guess I am beginning a new phase of my life. Not really what I had planned.
