I Am Worth More.

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.

Living with an Invisible Illness

I wanted my first post to be funny, light, and pleasant but let's face it--- that's not always how life goes. A few days ago, one of my very best friends [in the blog world and in real life] from Revision Makes Perfect, Melissa or as I like to call her- Mel-Bell, wrote a blog that hit home for me concerning chronic illness. 

She is the opposite from me. She doesn't have a chronic illness or suffer from mental illness. Instead, she is the spouse [and recently married spouse] to someone who suffers from chronic illness. In the beginning of her blog, she wrote something that made me cry:

"Yep, you read that right. I have two spouses.
One of my spouses makes me laugh whenever I'm around him whether I am mad or sad. He is an amazing person with a big heart, especially for animals. He likes the Ninja Turtles and can give you a whole explanation why the new Star Wars movies are horrible compared to the old ones ("They're classics!") And without a doubt, he is the strongest person I know.


My second spouse is mean and he is relentless. He hates pizza and salad, and is very picky with any other foods he eats. He can turn any day into a bad one and will even attack in public. The worst part is my first spouse and I have to deal with him for life."

This was hard to read. Because this was me. This is what my husband has lived with for 7 years, that only seems to grow worse as my chronic illness gets worse [I have Fibromyalgia]. Not only do I have the fibro, but I have the mental crap on top of it [major depression, anxiety, PSTD] which tends to be fueled when my fibro is flaring. Her post shows the side that those of us with Chronic illnesses don't realize... I hate to say we are wrapped up in our issues, because it isn't easy to function or live with it, but let's face it we are. All we can think of is how we are going to make it through the day without once wishing it would all just end. We can only think of how much of a burden we are on those who love us, especially the ones who chose to marry us [some knowing about these illnesses, some with no idea the illnesses would later strike in years to come]. Our joy is taken away from us and often times we don't realize [or appreciate] the toll it takes on our husbands and wives and our children. We become so self-absorbed in getting through each day that we don't realize that we aren't the only ones suffering. They may not feel the physical pain or feel the mental sickness we feel from chronic and mental illness, but they feel the emotional pain. They feel the helplessness that we often feel about ourselves. They feel guilty for being angry at us when we take all our pain and frustrations out on them. 

We never get better. There may be days where we struggle less than others, but there is no cure. Not from Crohn's like Melissa's husband struggles with, not for Fibro or mental illness like I struggle with, or anything of the like. Yes, medications exist that can make symptoms less- but it never goes away... and generally the side-effects are worse than the "help" it is supposed to give. 

It is hard to see us angry and depressed- wishing we could just fade away into the distance. It is difficult to understand what we are living through. It is difficult to love us through it. We do NOT choose to be this way, I know I don't want to. I know i'd give anything to go one single second of a day without my body screaming in pain, without my mind trying to make me hate myself and my life. I wish I could be different, as I'm sure many who suffer like me do, but that is not how it works. We need understanding and love. We need people to find our flaws worth the fight and for people to love us anyway. 

To those of us like Melissa, to my husband Robert, and so many others that take the brunt of our frustration, we can never thank you enough for your sacrifice, for loving us even when we hurt you, for never giving up on us- even when that would be the completely sane choice to make. We can never repay you for all you do....

To Rob & Melissa:

Rob: 7 years you have loved me through my highs and lows. Two years ago when I got my Fibro diagnosis, you encouraged me. Every day I am in pain or depressed and feel like life just isn't worth it anymore, you find the words to push me through. I can never thank you enough for the love and support. For the mental exhaustion you must sometimes face because i'm so angry with my mind and body. You are why I can fight each day and push through when I can't find it within myself to go on another second. I don't know what I could ever do without you! I love you with every beat of my heart 

Melissa: you and I have been friends for nearly 6 years. You have been there when people have come and gone because most just couldn't handle who I am and what I go through on a day to day basis. You have put up with things about me I don't even want to put up with myself. You never ever judge me, you support me even when I don't deserve it, and you are always empathetic, forgiving and supportive of me getting "better". NO ONE has been there like you have except for Robert. No one has stuck around long enough to discover how good I can actually be. On the good and bad days, you have been there. You have known just what to say to make it all seem okay. You are by far the definition of a REAL FRIEND and there is no one else out there aside from Rob who just "GETS IT" the way you do. You know when to say what I need to hear, and you know when to just be silent and love me through it. I am so beyond blessed to have you and thank you for accepting me as a whole, and not just the parts that you find suitable. You not only support sean, who you chose to marry knowing all of his invisible illness strifes, but you have chosen to support me as a friend as well, even when I took my anger and frustrations out on you too. There have been so many times you have forgiven me for being cruel and unrelenting in my rage because you knew it wasn't me... and i'll never ever forget that. I love you. 

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