I haven't blogged in a while. Mostly because my school work has been keeping me busy and I have been in a lot of pain, although the last week has been pretty good, although Rob left again for another school. So this may be a little long:
First off, I recently found out that I don't have Fibro or RA, it is actually Lupus. Lupus is an auto-immune disease that causes your body to attack itself. There are different types but the type I have will affect my muscles, bones and even my vital organs. I will never get better, I will slowly get worse although someday I could go into remission.
I won't lie, when the doctor read my results of my blood work- It took everything I had not to lose it. No, it wasn't a cancer diagnosis, but it was something that would completely change the rest of my life. Someday Lupus will win and my body will lose, and just knowing the damage this disease can do sent me on a downward spiral. Rob was with me. As soon as we left the office, I just broke down. I cried almost the entire hour drive home. "THIS CANT BE IT! THIS IS THE ONE THING I DIDNT WANT", that is all I kept thinking. I prayed and prayed and prayed that Lupus would be negative, but it happened to be the only positive. While I am relieved I have a solid answer as to what is wrong with me now, my heart hurts, i'm scared, i'm worried, i'm lost, i'm sad. They put me on the medication called Plaquenil which is also used to treat other auto-immune diseases as well as Malaria [my husband had to take it when he deployed to afghanistan]. This medicine will hopefully slow the progression of the Lupus and minimize my symptoms.
I think the biggest thing that hit me when I got the diagnosis was "Oh my God, what will I do when Rob's gone once it is worse?"Thinking these thoughts brought me to one conclusion: I am so alone.
Yea sure, loads of people say "I'm praying for you, I'm here for you, whatever you need let me know"... I don't want to ask for help in all honesty. It hurts to ask for help. It is like I am letting this disease win if I ask for help. I don't even want help, sometimes I just want someone to sit on the couch and watch SVU marathons with. I don't have that. I have Rob, but he's always gone now. I get so dependent on him that when he leaves, it's like a tornado hits. If I could count on one hand how many people have said they loved me and are here for me, I'd be rich. Now if I counted the people who actually once have showed up on my doorstep, even when I lied and said I was fine-- then I would be pissing in a pot and more pore than the lower class in the great depression. Isn't that sad? You see all these posts about not judging someone because you don't know the silent battle you are facing, but at the same time I want to be selfish and scream WHAT ABOUT MY BATTLE?! YOU PROMISED ME! YOU SAID YOU'D BE THERE! WHERE ARE YOU NOW? Where are these "friends"? Where is God? Why aren't my prayers being heard or answered. Why am I sitting here typing this in tears because of a post I saw a friend share on facebook, although I know she meant no harm by it. I feel broken, I feel unworthy. I feel like people don't want my baggage. It hurts. It hurts to not have one single list for Caylee's pickup at school. It sucks that aside from my kids, I spend my entire days alone, without a soul to cry or laugh with. But I'm not supposed to be depressed? I should be grateful?
The doctor made it clear that I was to relax, stay away from stress because stress would make the Lupus progress faster. I chuckled when he said that... I wanted to scream "DO YOU REALIZE WHO YOU ARE TALKING TO?" Rob and I just kind of looked at one of another and smiled. I'm a worry wart. I'm a little dramatic and I stress about everything. But more than all that I hurt. I sometimes wish I didn't have kids, because then it'd be easier to just give up. I wanted to tell the doctor, how can I not stress when my husband is gone and I do not have one single friend here, just a lot of people who call themselves my friends. How do I not hurt? How do I not feel like there is something wrong with me? How can I not feel worthless and useless? Call it depression, but of course I am depressed... Who wouldn't be in my situation. Yep, i'm on the pity train. But I think I've earned the right after all I've been through. I'm tired of unanswered prayers and I'm tired of words that are nothing more than blank "trying to be nice" attempts. I want more. I deserve more. I AM WORTH MORE.
I'm sure there will be people who read this and think "I can't believe she wrote this! What about me? Aren't I her friend?" and to this I pose the question, how many times have you called or texted me or even facebooked me since I found out I had Lupus, or even before? How many times have you come to my house just to keep me company when you knew I was down and feeling alone? I can tell you these answers are all None. I guess I just have to learn to accept that people just aren't going to want to deal with it. and maybe I shouldn't expect them to. I just want to matter. That's all.
