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.
6 comments:
Oh, Tami--my heart aches to read this. I just stopped and prayed for your complete healing from this condition. Know that you are loved and that you do not face this alone. Thank you for years of friendship, laughs, and great memories. Praying for many more to come. WE LOVE YOU!!
We've got your back, girl. No pity eyes, just prayer and support--and a laugh or two!
Tami ~ you know I love you! I know this is not what you wanted to hear but I am glad you at least finally have some answers and I am glad that we know the things you need us to pray for on your behalf!
A lady I used to work with always ended her day by making sure myself and the other girl in our department knew where everything was for any project she was working on "in case I get hit by a bus tonight". I thought that was so silly at the time but now that I am older, I think that ending your day knowing you've done everything in your power to leave the people that are counting on you fully armed with your best love, wisdom, caring etc., whatever best you have to give and knowing you've left nothing unsaid, is a great philosophy for living. None of us know if we are going to wake up tomorrow or not, none of us are promised another day. Five minutes, five years or 80 years, whatever time I have left, I am so thankful to be your friend for prayers, support, laughs and anything else that comes along!
Tami, I just read this (I'm way behind on blogs). So sorry you are having to go through this right now. I had no idea all of this was going on with you (which makes me a horrible friend,I know). Please let me know if there is anything I can ever do for you or your family to make things easier. I will keep your sweet kiddos anytime :). Prayers will be said on your behalf. We love you!
Tami-will be thinking about you and your fam during this crazy time for you. I have fibromyalgia, another autoimmune disease, luckly it's very mild right now. I know about the shock and uncertainty while learning what's going on. Praying for an easy road for you. We have a great family friend with lupus who's well into her 60s and going strong. Hang in there and even though we haven't seen you guys in a while,we're in Burleson too, just around the corner. Please let us know if you need any help at all!
--Adrienne
Tami,
My mother has Lupus and was diagnosed in her 30's. She is alive and VERY well at the age of 65! As a family member of someone with Lupus I am here for you. As a worker in the field of Clinical Research I am here for you. I am currently on a study for Rheumatoid Arthritis where many of the subjects have Lupus. If you need me let me know.
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