All my grand plans for Father’s Day were ruined by Lupus.

In fact, most of my plans as of late have been ruined by Lupus.

Everyone keeps telling me it’s not my fault. Everyone keeps telling me to stop stressing out over things I can’t control. But what ‘everyone’ does not understand is that regardless of fault and stress, I still have to handle it all. I still have to live this life that is currently shit.

I have to explain to my husband that he’ll need to be alone with the kids for the rest of Father’s Day because I need to go to the hospital. I need to worry, with an IV in my arm, if the right sunblock will be packed for camp. If I plugged in the iPad and DSi for the ride so the kids have something to do on the way. If they will be upset when they wake up and I’m not there. If everyone is starting to resent the burden they carry because I can’t ‘get it done.’

The rides back and forth to treatment for 14 days. The constant pharmacy pick ups. The constant lack of help around the house. The constant worry when morning comes and no one yet knows if it will be a ‘good’ day or a ‘bad’ day.

My family deserves so much better. My kids deserve a mother that can scooter down the street with them, my husband deserves a wife that can go on a date night. They do not deserve this.

Last night, as I laid in yet another hospital bed, I cried harder than I have cried in a while. I didn’t cry for myself. I cried for them. I want them to have a better life. I want them to have an easier life. Where no one worries about medicines and treatments and lab results or if Mommy will make it to the end of dinner before needing to leave for a doctor’s help.

I keep telling myself it’s getting better. It WILL get better. And time and time again I am disappointed in my body. Part of me wishes it would just give out already so everyone can get on with their lives and be happy. Be normal.

Part of me wants to just vow to suffer in silence and do everything a normal wife and mother would do, to hell with the consequences.

Part of me wants to demand better care, better drugs, better treatments and to never be silent when I am uncomfortable and to continue to fight as fiercely as I can.

But most of me is just exhausted and upset.

Today my doctor told me my treatments appear to be working. It is a bit early to tell, but we are headed down the right path and those once scary lab results are looking much better. But we still have a long way to go, with additional twists and turns including my growing tolerance and addiction to pain medication.

Nothing has come easy with this disorder. Nothing.

I’m not sure what’s left to relinquish, or from where I will find the strength to keep down this path…even as it appears to be leading to the light at the end of the tunnel. I have lost so, so much and I’m starting to lose faith that I can do this. I want so much better for my kids and my husband. I love them so very much that it hurts me more to see them go through this than to have a million veins collapse, a millions mornings of pain, a million more treatments and a million more tests.

I want my body back. I want my life back. I want my husband to have a normal looking wife, I want my kids to have a Mom who can be present in their lives, not fighting for her own.

Tonight I’m ripping off the bandages and tape and ekg circles so there is no evidence left of this last hospital stay. I want my husband to walk through the doors from work and at least not be reminded. I want to tuck the kids in bed without them worrying where they can or can’t touch me for fear of causing pain. I want them all to treat me like nothing is wrong, even if we all know it’s not true.

I struggle so hard to make life as normal as possible for them, that I think maybe if I can fake it, they will treat me normally in return. Of course, nothing is normal. We all can’t just pretend forever…

…but maybe, just maybe,  if we pretend hard enough and long enough, we’ll get to end of that tunnel and no one will need to fake it any longer.

The only other option is to give up. Which is not an option, no matter how horrible the day or how awful the guilt.

I don’t wish Lupus on my worst enemy.

This is what Lupus treatment does to your body.

Warning: graphic photos

Both of my inner arms look like this- and it stretches across my chest and onto my breasts:

These are my inner thighs and legs. I don’t think I need to say much more:

You can also find these patterns across my sides, my back, my ass.

Treatment that is protecting my organs has made it hard to get in a bathingsuit and face the world. The rapid, steroid, weight gain. The horrible marks. The bruises.

Never let it be said I’m stoppable.

Alright, so it’s been 10 days since I’ve posted…but to be fair, it’s hard to blog with an iv in your hand and immune globulin getting pumped into your body.

I won’t lie, it has sucked. Hours upon hours sitting in a recliner in my doctor’s office, day after day, hooked to an iv and hoping beyond hope this works.

I was supposed to wake up feeling better today, but instead woke up feeling worse. I was ordered to come back Monday for an extra day of treatment, a re-calculation due to my rapid, steroid-induced, weight gain. Now, we are told, I should wake up tomorrow feeling improved.

Here’s to a new dawn. I will go to bed tonight wishing and willing it to be true.

Every three weeks for the rest of my life I’m going to sit down in a recliner for three days in a row and have good blood pumped into my sick body.

It’s called IVIG and it’s going to help me live a normal life. That’s the plan anyway.

With recent tornadoes and tragedies, not to mention every day accidents like car crashes…it got me to thinking just how important blood donations can be. You see, that IVIG stuff up there is pretty much good blood. Good plasma. Good immunoglobulin so I can take my kids to school, plant flowers in my garden, cook dinner, and kiss my husband. It means I can fight with conservatives and write blog posts and take my kids to the park.

But I have to count on other people in order to get the treatment I need. I need good healthy people like you to donate blood. Donate plasma. Donate the healthy red stuff you have flowing through you that I lack.

I know many of you have been asking how you can help. This is an easy way to help me and millions of others who may need blood.

I even made it easy for you. Click here to find out where you can donate near you and look… you can even make an appointment!

Thank you.

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.

My mother-in-law came to town and I didn’t clean a damn thing. She was seconds away from walking in the door, and I sat up in my bed, knowing full well what my house looked like downstairs.

Luckily my husband had picked up a bit, but I knew the toilets were not clean, the carpet unvacuumed. Rotting wet-cat food on a plate in the garage, and don’t even let me get started on the putrid, green aquarium.

But it was ok. I just left the hospital. I had just endured another iv of drugs. And I sat there telling myself it was OK. It really was.

But it wasn’t.

It really wasn’t.

I’ve never been unable to at least pick up the house before my INLAWS came form out of town. Never. Even before giving birth to my second child I managed to make sure things were clean.

Go ahead and laugh at me. I don’t care. I’m the person on her hands and knees scrubbing the kitchen floor before guests arrived and who will do anything to get you OUT of my house if it’s not picked up. Well, I used to be that person. Then I had to learn to let go.

This hasn’t been easy.

Being very ill makes it easy…not cleaning on those days comes with no guilt. But on the days I feel good it’s all I can do to NOT go on some crazy, anal, cleaning spree and organize my entire house. But I know I can’t. I’ll pay for it tomorrow. This creates more work for my husband. More guilt for me. It’s a crappy situation.

So there I sat, in my bed, listening to my mother-in-law walk in the door. I sucked it up, walked down stairs, said hello…and not so secretly looked around and hoped I didn’t look like the biggest failure of a wife and mother ever.

Of course she’s been wonderful, cleaning and cooking and what not. Keeping very busy in my very messy house. It kills me a little. Ok, it kills me a lot.

But at least I’m here to watch.