There are mornings where I wake up and I just can’t do this anymore.
I do it for my kids. I do it for my husband. I get out of bed and I pack lunches and I leave the house for not one, but two doctor’s and not one but two IV’s. I will do it again next week. And the week after. And the week after.
To say we’re sick and tired of this is an understatement. Tired of talking about it. Tired of doing it. Tired of living it.
I want to pretend this is not my life for just a little while. I want my kids to feel normal. I want my husband to feel normal. I want my house to be normal.
I want to wake up and feel normal. To just go about a regular day like a regular person.
This week my Lupus doctor told me I was a “very sick lady.” He’s protecting my vital organs and trying to make me comfortable- a feat any doctor has yet to accomplish without very strong narcotics.
I don’t try to sugar coat this disorder to myself or my family. I’m lucky to still be here and I’m lucky treatment is working “just” enough to keep me alive.
But I need it to do more.
Maybe that makes me greedy. I don’t really care. It’s my life and I will be greedy if I want. My children need a mother, my husband needs a wife and I will be as fucking greedy as I damn well please.
But I am tired of waiting.
I want to go back to work. I want to go back to life.
Instead I will go get another IV. And wait. And wait. And take my good days where I can get them and do everything I am told, which pretty much includes a whole lot of sitting. And resting.
I’m tired of resting.
Restless doesn’t even begin to cover it.
I guess it’s sort of like being political and continuing to get into political debates. It’s exhausting. It’s never ending. And after all is said and done you’re not really sure anything changed. But you HAVE to keep fighting. You know what is right and what is good and what is necessary and you just HAVE to keep going.
Forgive my complaining. It’s just been one of those stretches around here. It makes me angry. It makes me yell and write and whine.
It also makes me buy new garden decorations:
I just need to moon the world right now.
I can’t imagine how much it sucks. I think you can complain any ol’ time you want to. And your gnome is awesome.
Oh, Erin. You? HAVE THE RIGHT TO COMPLAIN. Not just a little either, but like, a LOT. And anyone who begrudges you that can #suckit. Seriously. It’s not like you’re getting all judgy and het up over blog dramaz or how someone else raises their kids. There is a time and a place for bitching and impotent fist-shaking in the general direction of the universe at large, and you, my friend? ARE THERE.
I’m so sorry this is still ruling your life; it sucks and it’s not fair and I hate that there’s nothing any of us can do about it.
We join you in the mooning. Complain all you need. It is understood and we join in your complaints. We want you well too.
Feel free to complain. Hopefully you get your answers soon and something positive happens to change the course of this thing.
That doesn’t count as complaining…it’s just being honest. I’m so sorry you are going through all of this. From our perspective though, you are doing amazing. Please know you are in all of our thoughts! ~Sending well wishes (and hugs) your way!~
Say whatever you need, whenever you need to. You’re awesome, your gnome is awesome, and I hope this lupus thing disappears too!
(Oh and you should write a book; it’s quarter to one am (I have to get up at 5:45 am, and I can’t stop reading!)
Sending big hugs Erin…
I wish I knew where we got this idea that we’re not supposed to give words to the things in our lives that are painful, that somehow we’re “ungrateful” for saying “Hey, this sucks and I don’t like it one bit.” You are not *supposed* to feel anything other than exactly how you really feel. Please don’t chastise yourself for not feeling what other people think or say you “should” — accept that you feel exactly as you do. What you are living through on a daily basis is unimaginable to me and I think you are doing an incredible job of fighting as hard as you can.
You have a right to be angry. You have a right to complain.
Not only that, but you need to. Keeping that anger inside is damaging in itself.
You have all this going on and yet you can still laugh, hang out with your kids, roll your eyes at politics. You haven’t just crawled into a hole and given up. You are figthing the good fight.
You are AMAZING!
Lots of good thoughts and caring coming your way.
There are actually some days when I hesitate to check your blog to see how you are. But, I am not the one who is being brave, you are. I have being praying that you stay strong emotionally and physically, that your husband remains compassionate and doesn’t get too overwhelmed and that your children are still able to be children thru all of this.
My heart aches for you and your family and what is being endured. I wish I was closer and could give you a helping hand or anything that would make even one day easier for your.
Complain all you want, as often as you want and with as much profanity that you want =)
Big hugs,
Tami
Thank you for fighting so hard, Erin.
You are one of the least greedy people I know.
Fantastic post! No need to apologize for venting!!