I feel the need to do this. So just let me.

I’m on day 7 in the hospital. This time I have CDiff, fluid in both lungs, an infection of the blood, and paralyzing gastroparesis making eating impossible.

Eating has actually been impossible for several months now. Getting worse and worse as time went on. The doctor had a nurse coming over to give me hydration via my port. Which turned into months of me not eating and only living off the IV in my living room. I’d sleep a lot. I’d pick up the kids, take them where they needed to go. Get some sort of dinner on the table. And fall back on the couch exhausted. When you don’t eat it takes everything in you to just shower.

For some of this time I was on steroids. For the second half of the IV, couch, IV, couch life I was finally weened off the steroids and the weight has begun to drop off. All those years of steroids coming off in a few weeks’ time. I’m down to almost a normal weight for me. A heavy normal, for sure. But it’s still falling off and I can’t imagine it will be long before I’m looking like myself again.

That is if I get much further.

There has been an ominous feeling about this illness and this bout, in particular, looming. I came to the hospital knowing my stomach was bad and the CDiff was probably causing it and finding out my lungs are bad and my blood is sick. Nothing about this stay feels hopeful.

Even the procedure I will have in the morning isn’t hopeful. It’s a stop gap to get some nutrition in my body. I’ll be getting a tube in my stomach so I can be fed like an invalid. My stomach isn’t working and we don’t expect it to work anytime soon. So this is the next step in keeping my organs going.

I’m not feeling good about going under in the morning. And for all of these reasons and more I want you all to know I love you. Yup, even you, reading this because you heard something happened and you wanted to see what I had to say.

Take care of my babies. Take care of my husband. They will need it. Keep my family in your thoughts but more important make sure they are all doing what they should be doing. Aaron needs to be rocking out and making the pretty pictures on the big screen. Jack needs to be inventing and finding himself during this confusing time. He’s a mamma’s boy. Remind him to dream big and flamboyantly. To his embarrassment. Because it’s what I would do. Make sure Hala keeps her strength but allows herself to break down. She doesn’t have to be so strong. She knows who she is, like I did at that age, and she’s sure of herself. Remind her. They are the loves of my life and I will haunt them forever to be there. I refuse to miss a thing.

Make my Mom travel and my Dad be the Gramps he needs to be. Make Ronnie change diapers and not wiggle out of it. And when he gets to that Dad point scratching his head, tell him I told him so.

Wrap my friends in words. The ones I was close to. The ones I wanted to be close to. The ones I spent more time with in digital form. The old friends I still think about and love and the new friends I’ve welcomed into the fold. Be bold in your words and in your life. Don’t be afraid to debate that Republican and stand up for those who need it more than you.

To those I pissed off with my words I don’t take a single one back, and you love me for it. To those I inspired with my words know that was an accident but I’ll take it.

I’m so tired of being sick. I’m so tired of living this half life where people take care of me and I try and fail to take care of a household. I hope what is there is memories of love and snuggles and fierce independence.

I’m sure this will pass and I’ll float on to the next half life in this illness. Fighting. God, I’m always fighting. I’m so tired.

Fight for me and mine now. Get Erin angry and move a mountain. I’ve moved plenty. Now it’s your turn.



  1. I have no words – just worry and prayer.

  2. Sending you healing strength and peace.

  3. Beautifully written.

  4. You have been such a force in my life over the last 8+ years. Don’t even think about going anywhere when I still haven’t gotten to see you here yet. You are a warrior and this is just the battlefield you’ve had to fight on for these past many years.

    But know you are loved and valued and even so, your family is our family. Just as you are. Love and strength. xo

  5. Melissa Hourigan says:

    Praying for you – you have fought so hard, this is not how this story ends. I want to hear your victory speech and will be sitting here waiting.

  6. Felicia Franks says:

    I want to move all the mountains in all the world for. You are so important me and you don’t even know who I am. I’m so sorry for all of this. I wish I could take it from your shoulders and finally let you breathe.

    You are amazing.
    You are powerful
    You are so very loved.

  7. Good luck Erin. Xxoo

  8. Love you all so much.

  9. My heart’s with you, Erin.

  10. Stacy Fortner says:

    Erin I only hope to be as strong, as courageous, and as full of love/life, as you are… I’m lucky to have met you, and to call you my friend. I love you, yep, I do! Wish I could have known you longer, and our friendship closer because I think we could have raised a lot of hell together… I’ll be thinking of you tonight as fall asleep. Hugs!

  11. Meredith Schwartz says:

    Oh, I send such love to you. Fingers crossed and prayers spoken and hearts focused on you, however it goes. <3

  12. Ronda Smith says:

    Erin I’m sending you all my prayers, hope, strength and love for you to keep going. You have been through shit and it totally sucks. I want the best for you, I want recovery for you. Your words have helped me many times. Thank you. Love you!!!

  13. You are one of the strongest spirits I know. I never count you out. I do wish you did not have to work so hard, with all my heart. Sending love and prayers and wishes for healing.

  14. Thinking of you and sending all the good thoughts and love.

  15. Sending you and your family love and light 🙂 XO

  16. Jenifer Smyczynski says:

    You are a phenomenal woman and I pray that this is not the end. I pray this is not the time to say good-bye. If it is, you’ll never be far from my heart. We’ve never met in person but I’ve stood by in the wings, watching you take on life, when it wasn’t kind or fair, with the strength of a 100 women. You never faltered and your determination to conquer made me a sideline cheerleader, raising my pompous and changing “Go Erin GO!”. I will raise my pompoms and chant some more until there is no reason to be chanting. You’ve changed my life for the better.

  17. With you, Erin. Love to you and yours. ?? (Maggiedammit)

  18. (Those question marks above automatically appeared where I put a heart emoticon. FYI. Wtf. 🙂 )

  19. I have always admired your voice, your sense of humor and your strength, Erin. I do not blame you for being tired. This life is exhausting on a good day, and you’ve been unhealthy for such an unfairly long time. You have a soul strength beyond the ordinary, physical strength of the average person. I know you’ve tapped into that too for a long, long time too, but I pray there’s still a deep reservoir left. And if there is not, please know that you have changed lives and left dents and loved big enough for dozens of ordinary mortals. Rest, rest, rest your physical self as much as you need. Let your soul strength linger and hold on as long as it can. There are thousands and thousands of other souls supporting it in a realm we’ll never understand.

  20. All my love to you, Erin. You’re one of the strongest people I’ve met, and I know that strength will carry you through this setback. I hope everything goes well today and you can begin the healing process again.

  21. It’ll be okay in the end.

    If it’s not okay, it’s not the end.

    This is not okay.

    This is not the end.

    I firmly believe that, because you’re not done here, Erin.

  22. You’re in our thoughts & prayers. <3

  23. My thoughts are with you.

  24. Brendazzle says:

    No no no no no. You have suffered more than enough. It is someone else’s turn. It is time for things to work and for you to be able to relax and LIVE again. This isn’t “good night”, it’s “I finally got a freaking nap.” I love you and I’ll be here when you wake up. <3

  25. Thinking of you today, my friend.

  26. I have nothing but love to send. XOXO

  27. long time fan, first time commenter here. I am hoping for the best for you. With love, from Canada

  28. Oh Erin. We will be praying for you. And hugs. Lots of hugs.

  29. Well, I read this and immediately closed my eyes and prayed for you. Not caring that I’m at work and someone might see you. I was just moved to do so. I want so much for you to be out of pain and healthier and so I prayed.

    Fight on , sister.



  30. See “me”. Not you. Anyway, I think you get it. Much love and strength to you

  31. Sending love and hoping today is less painful. I am so sorry you have had to suffer so much.

  32. Much love and strength and healing to you my lovely friend. I’ll be strong for you.

  33. Oh Erin. I have always adored you. I am sending so much love and light to you and your family.

  34. You are living a purposeful life.Even though it may feel like a half life to you, for the people you touch, your life adds meaning to ours.Your willingness to share the pain,the frustration, the sadness, the anger and the loss that your illness has brought, makes each of us who have the privilege of following your journey better people. You inspire us to appreciate what we have,to understand that we can’t take it for granted, and that we need to make a difference. You are making a difference. You are putting a face to Lupus.
    I hope in the days to come your face can be filled with smiles once again. Thinking of you.

  35. Rooting for you and your family, remembering you and your humor and vitality and the amazing writing I’ve heard you share at conferences.

  36. Hugs to you and your family Erin. My thoughts are with you.

  37. Erin, just caught this. I think of you all the time even though we haven’t talked in a while, every time I see a spoon, basically. Sending love from KC.


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