Posted by: hockeygrl1 | April 30, 2012

A Fire Within A Dark Place

You know that place you get to when you feel your worst and nothing is going your way, when you wish you never were sick or at least that it would all end; I’m at that place.

That place were you think the pain, doctor’s visits, and medications will make no difference and no matter what you do you will always feel like crap; that painful place.

Where you think you’ll kill the next person that says, “It’s not that bad”, “It could be worse”, “Just take a nap or drink more caffeine” or thinks their illness is worse than yours; that dark place.

You know, when you’re wishing someone would cook you dinner, clean your house, watch TV with you or just stop by to hold you while you cry; that’s the place.

You know – like you’re standing in a crowded room, screaming, “Lupus Sucks!!” but no one even looks up, hears you or cares (thank you Rose); a dark lonely place.

When you get to that point when you can’t do anything right. No one is happy with what you do and you can’t do enough for you or your family; That WTF have I done dark place.

The place and time that you start sentences and stop in the middle and don’t know or remember what you were talking about or cannot think of simple words like dishes; that dark mind numbing place.

The place where you know you’re missing out on everything… Going to the bar with friends, meeting new friends, school things and even helping kids with homework, but you’re stuck in that dark place.

A Place where the anger and hatred for your disease and anything and everyone involved in it is building up in your chest and you know it’s going to explode soon; that hated dark place.

The place that is so deep and so dark that you wonder if there will ever be light in your life; that deep dark place.

It’s times like this that I let my love of my children lift me up. I know if it wasn’t for them I wouldn’t be here still fighting against a disease that has no rules or if it does it defiantly doesn’t follow them.

It’s that fight in me that allows me to act like nothing is wrong when I really feel like my limbs are on fire.

That fight that makes all of you that see me think everything is OK.

That fight that allows me to post pretty happy things on Facebook and Twitter when I really feel like crying or killing someone.

You know – that fight you never know is really there until you deal with chronic illness.

The fight that allows me to cook dinner with one hand and a puke bucket in the other so no one thinks anything is really wrong.

Fighting allows me to not take pain pills until I’m nearly in tears so I’m not all loopy around the kids and their friends, so I can help with homework,  and so I can drive them here and there.

There is a fight there that allowed me to keep how sick I really am from my parents so they could enjoy their month-long vacation. Their first one together since both have retired. They get home this week and have no idea. (They don’t use computers)

I know that this fight will allow me to make a difference in how lupus and fibromyalgia is treated and I so want it to be more recognized in my home state. The Vikings already wear purple. Come on boys put a butterfly on your helmet one game for us!!

I hope this fight makes a difference in someone else’s life (other than my kids) I want to inspire and some day lead.


Please know that I am still fighting this dark place and I am not in a place where hurting myself is an option. This place is temporary, not permanent. It will pass, but lupus won’t. People are hurting and I don’t feel there is enough being done. Every time I see a commercial for another disease, which for some is a few times a day, I wish it was for lupus. One new drug in 50 years is unacceptable! (I get to start it soon – BenLysta) Research is a must and that needs funding. What will you do to help? Well in Minnesota there are 2 events coming up. I will be at BOTH of them. The 2012 Lupus Food & Wine Classic, the Lupus Walk For Hope & 5K Run .  Please Join me at these events!!


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