Squinting Hard for Light

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.


  1. I wish I had something wise to say, but I wish you peace and I hope, after some sleep, tomorrow will be brighter.

  2. Oh, honey. This sucks so hard. I wish I had a magic wand and could take it all away.

    I know you’re running low on faith, so I’ll just have some for you, okay?

    Prayers, good thoughts, and positive energy coming your way. ;(

  3. Oh Dear. We’re praying for you. We love you. They love you. ((hugs))

  4. Get that crown back on your head right now woman. #youcandothis

  5. All I have are words of hope and encouragement. I do wish I had more. I hope like hell that this just up and goes away. Much love, friend.

  6. Alli Worthington says:

    Hang in there, Sister. You can & will do this.

    Prayers for you going up now.


  7. Oh Erin. Love you all.

  8. Oh my dear….I totally understand..even without horrid illnesses and treatments….but it is what it is…they love you..you love them….you are a team in this…..as much as you don’t want them affected by it all….you are all together and they know and that is all that can be.

    I can’t say chin up or hang in there…just aim for the top of the next hill to roll slowly down the other side right..and see what is there…together….

  9. Lupus sucks and pain sucks and not having a normal life sucks. Yes, all true. But can I be all Pollyanna for a second? Just one? Oh, come on. You know you want me to.

    Don’t we all wonder, in our heart of hearts, why people love us? How much they love us? Would they stop loving us if…we didn’t have a good job, if we weren’t pretty, if we weren’t capable of handling it all, if we weren’t good-natured and patient?

    You have one great gift – you know that your people love you for YOU. Not because of what you do, how you look, what you can do for them…they just love you. Because you are you. That is something most people don’t ever get to know. So there’s that.

    Pollyanna out.

  10. Sending strength and love. I wish I could do more. xoxo

  11. Sending good vibes your way. You will beat this even on your darkest day you are giving someone hope who is in your situation. Just remember you have a family who loves you and even if you feel this might be a burden they are not complaining.

  12. Suebob said it all. I wish you much strength in this fight.

  13. One of my favorite things ever said about “Normal” is that is a setting on the dryer. And I don’t know about you, but most of time I set my dryer to “delicate” anyway.

    Your children, and husband and family and friends want to have your around for a long time. They want you to get better and stay that way. Sure, it isn’t easy. And there will be disappointments and hard days. But these things will also make them stronger and more independent.

    Tomorrow marks 12 years that my Mother has been gone. She died from alcoholism. I wouldn’t wish that pain on anyone.

    Trust me that you are worrying about the wrong things. It isn’t selfish for you to focus on your health right now. The goal is to put Lupus in remission. Uncharged iPads and sunscreen will take care of themselves.

  14. Love you.

  15. Loren feldman says:

    Nothing smart to say. Just wanted to let you know that I thought deeply about this story. You are a good woman. You are in my thoughts and prayers.

  16. How do you even comment to that? Anything I type feels so lacking……you will go on a date with your husband (in your hooker boots) and scooter down the street with your kids. There are enough of us here to will that to happen when you don’t necessarily feel like you have the strength yourself.
    P.S. ‘Normal’ is WAY overrated.

  17. I wish I had something helpful to say other than “I’m thinking about you and pulling for you.”

  18. What Suebob said–and I am far less a Pollyanna than she is.

    Your courage amazes and humbles me.
    Keep holding on–and know that we’re out here with you.

  19. Try not to feel the guilt about how they feel. How much worse would they feel if you are gone? Generally when people are sick, loved ones WANT to take care of them. They are HAPPY to run and fetch WHATEVER you might need to feel better.

    Think how you would be if your husband was sick. You woudn’t be thinking, damn, I really don’t want to go to the pharmacy to get his medicine. You would probably be running over there because you know it would make him feel better. I’m sure they feel that way too!

    You just need to concentrate on getting better.

  20. You are certainly well overdue on a break in health issues. If you ever consider coming to Mayo you have a place to stay. Also if you need any help with appointments I would be glad to help you out. Stay tough, the alternative is not pretty. Hugs.

  21. I can’t stand that this is happening to you guys.

    Also? I can’t stand knowing that this same kind of stuff was happening to my aunt years ago and I had NO IDEA what she was going through. I saw her puffed up on the steroids, and I knew she had pain, but honestly, not really a clue what she went through.

    So, if it’s any consolation at all, thank for you sharing, for teaching me what it’s really like. At the very least you have educated us.

    Hang in there….it’s bound to be your turn to feel better soon! 🙂 (fingers crossed)

  22. Sending you love and light.

  23. Rachael Macry says:

    It is so hard. Just a bunch of hardness. My wish for you today: scrape together a couple of minutes. 5. 10 if you are ambitious. Pretend time. Just to pretend.

    You don’t even know me but…. {{{hugs}}}

  24. Lots of love. Really. That’s all I got.

  25. francine hardaway says:

    1)You got Loren Feldman to say something nice
    2)You WILL be better. you have been penalized by late diagnosis
    3)You are alive
    4)I love you, and I have come to love you through everything: you video podcasts with the wine, all your tweets, and the lupus. I feel close to you.

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