You maybe tired of hearing me talking about being sick, but how do you think I feel having live with it day to day? I don’t care if you are tired of hearing that I am sick, because guess what? I am sick and I am in pain! Whether I talk about it to you or not that will never change.

My days are hard, I have to think about how to complete the simplest tasks that YOU as a healthy person can do with out thinking about it. I have to create a plan for my days to make sure that I have enough energy to get through my day. I have lost who I once was. And I count on my family and my friends to help me connect to that person again. So, yes, I have to talk about my illness. I have to talk about my pain. I can never forget that I have this illness because it has changed my life completely. And comments from the people who are supposed to be my support, that say they are getting tired of hearing about my illness and my life with it, feel like a grand betrayal.

It feels as if I have no one to turn to. It feels as if I have to get through this alone, as if no one cares. Me talking about my illness does not mean that I have given in to the illness. I does not mean that I have stopped fighting. Me talking about my illness is my way of making sure that healthy people, like you, can have an understanding of what my illness does to me. The more people that are aware of just how hard it is to live with being sick the better chance I have of seeing SOMEONE make a difference to keep future people who are diagnosed with this from having to go through what I have.

So whether you are tired of hearing or seeing me talk about being sick I WILL NOT STOP TALKING ABOUT IT. I will continue to blog, tweet, and set Facebook status about what I am going through. I will continue to let people know that I am living with Lupus and APS and Fibromyalgia and Migraines and I will continue to show people with my words what I am going through. And if you are truly done with seeing these things, maybe it’s time for you to walk away, because in order for me to continue my fight I only want positive, supportive people around me.

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I watched a trailer that was posted on twitter by someone that I normally look forward to looking at her blog and her posts and I was appalled. The first strike against this person was that the fact that the post with the link read “Is ADHD biology or another way to control kids?” The film from what I can see is probably a good one and brings out issues within the public school system, things that irritate me but I can’t afford private schooling. But the remarks that are made about this condition, even now anger me. I understand that there are a lot of children out there with the label of ADHD and on medication that don’t need it. Those are children of parents that don’t have the patience to deal with childhood behavior. And then there are children like Quinlyn.

At a very early age Quinlyn started to show signs that something was amiss. She couldn’t control her body (constantly fidgetting or moving), she couldn’t play quietly, always climbing on everything and much more. As time went on and she started school she became disruptive, disorganized, forgetful and her hyperactivity seemed to skyrocket. She didn’t have many friends at school because they all thought she was too hyper, too crazy. Now tell me is that her just being a kid? I have chosen not to medicate her despite the fact that she is a prime candidate for it. I chose not to medicate out of fear that her sweet beautiful spirit will be lost in the process. But it makes me so angry to sit and read or see people out there trying to tell ME that this doesn’t exist.

Those that say that have never seen a child like Quinlyn. It hurts me to have to watch her get so frustrated because she can’t control herself. To see the desperation in her eyes when all she want to do is please us and do her chores or homework but her body and mind won’t let her. To see the circles under her eyes because even when she’s exhausted she can’t find a way to rest. Don’t you, any of you who don’t believe this is real, sit there and tell me that this isn’t until you have to hold a child who came home in tears because one of her friends said she was crazy and doesn’t want to play anymore because she’s different. Don’t tell me it’s not real until you have to sit with them and constantly try and refocus them so they can finish ONE page of homework. Don’t tell me it’s not real until you have to talk to their teacher EVERYDAY because they are having trouble focusing in class or disrupting the class. Don’t tell me it isn’t real until you have to wade through the mountains of red tape to get them the help they need in school. And don’t dare tell me isn’t real until you have to see all of those things everyday and then agonize over the decision of whether or not to give them a medication.

I live with this, watching it, adapting to it and trying to fight it everyday and I tell you now that there is no doubt in my mind that this is real. It is not a phase of childhood, and it is not a farce thought up my pharmaceutical companies, school officials and impatient parents. It is an illness. An illness that I have to watch helplessly as my beautiful girl fights against it. Because in the end I can only help so much because this fight is her own. I only hope that I can give her enough strength to continue her fight and conquer this demon.

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