Saturday, January 22, 2011


Okay warning in advance… this is not going to be a pretty blog post. Please hit the little red box on the top right hand corner and go to the florist’s shop if you want pretty.

All week long I have been fairly repetitious on my standpoint about life. My week down right sucked. It was so bad I wondered why I was even still around last night. A dirty rotten no good very bad week.

I am angry, sad, scared and feeling quite pissed right now. My life consists of pain, fatigue and lack of control. Every morning I wake up hurting. Every day I trudge through hurting. Every night I try to sleep while hurting. There is no un-hurt right now. No shelter, requiem or sanctuarary. Makes for some very dark perspectives on life. To the point of muttering, “why stick around?”

All week I felt totally artificial answering questions about how I felt. ‘Don’t think I answered a single person honestly. I do not feel good at all. Dreadful would be more of the word to use. Fatigue has been enough on it’s own to just about kill me. Sleeping for close to 14 hours once I finally pass out. Not feeling energized. Just kind of trudging through things in a zombie like state. This not how any teenager should live. I am missing out on so much because of lupus.

Bitter tears well in my eyes but I cannot actually bring myself to cry. I am experiencing too many emotions to cry. My quality of life is so depressed compared to others. Other people can think about going out of state for college or how awesome their all day shopping trip is going to be. My thought for Friday “do I even have enough energy to drive myself home from school today?” On Tuesday I actually had my sister drive, even though she was not supposed to. Considering I was falling asleep during the middle of a performance in class… I was far from fit to drive.

My mom and I have been clashing. If there is one normal thing about my teenage life, it would be the verbal brawls between my mom and I. Going back and forth about how she really doesn’t need to know all the details of my life because she tends to blab everything. Not even the strongest duct tape will keep my mom’s mouth shut about anything. So I feel like I have little privacy or true trust with her. Luckily my dad has been out of town because he just doesn’t deal with anything illness or drama related well.

Even things I should be happy about I am not. I feel too awful to be happy or at this point to even really smile. Life just sucks right now.

Awfully hard to get motivated to get out of bed in the morning each day knowing what I face. Sometimes I just wish someone would put me to sleep until there was a cure. Granted I may be gone for centuries but when I would wake up, I would actually be able to live.

Sometimes I think the doctors don’t care. They don’t have to live with me, watch me suffer or struggle. All they see is 20 minutes of me. Just brush me off and throw me away. There is nothing to do… nothing to be done… no cure… no revolutionary new treatment… just temporary fixes… temporary wears off. The only option they are pushing for prednisone but I flat out refuse. Options, I want options. Not a dead end street.

Most people who see me do not see the “behind the scenes” of my life. How hard I work to look “normal”, act “normal” and seem “normal.” Trying to hide everything that is going on. Putting up a front of total “normalcy.” Tricking people into thinking things are perfectly fine… when they’re just not.

I guess this all really begs to ask the question “are you okay Katyann?” My response is I’m not quite sure actually. Right now I am in such mental turmoil, I can’t really say yes or no. A lot of things just do not feel right, right now.


  1. Katyann, I love you, and I don't want you to pretend that you aren't hurting. Pretending is a waste of spoons, especially when it doesn't work. Sometimes, it is good to talk to people about your day, what happened, how you felt about it. When I chat with you, it's okay to tell me what happened. Last night, I knew that things were not okay, but I could not seem to get you to talk about it. I know that whatever happened in music class seems to have been especially upsetting to you. Without specific details, I cannot offer specific support, but generally speaking, you are an intelligent person and you have a good sense of humor. The more I work with people with special needs and try to define and understand what is "normal", so that I can teach it, the more I am convinced that no such thing exists. All you can do is decide what you want for your life and what YOU will need to do to accomplish it; then go for it. I know that nothing will stop you from achieving your goals, not lupus or depression. You are stronger. You will win.

  2. Aunt Sarah- If I wanted to talk to you about it I would, but the truth is I don't. Music class actually isn't upsetting to me. It is part of what is keeping mildy sane.

  3. Well, so much for the sense of humor. I'll butt out now.